Recovery After Stroke

What would you do if your family was told you wouldn’t recover, and you lay unconscious for four months?

That was the reality for Mark Bragg, a Canadian musician whose life changed when an arteriovenous malformation (AVM) caused a devastating brain bleed. At just 48 years old, Mark’s love of music was replaced by survival, and the one thing that kept him alive was something most of us know little about: a brain shunt.

What Is a Brain Shunt?

A brain shunt is a small medical device designed to redirect cerebrospinal fluid away from the brain into another part of the body, usually the abdomen. This prevents dangerous fluid build-up known as hydrocephalus, which can cause swelling, pressure, and further brain damage.

Brain shunts aren’t perfect — they can fail, get blocked, or even become infected. But for people like Mark, they’re often the only option to stay alive after a severe stroke or bleed.

Mark’s case shows just how fragile and life-saving a brain shunt operation can be. His first two shunts became infected. The third one finally worked, and it gave him a chance at recovery.

Four Months Unconscious

When Mark’s brain bleed struck, he collapsed at home with his child nearby. He was rushed to the hospital, and doctors placed an external ventricular (EV) drain to relieve pressure. His family was told not to expect a recovery.

He remained unconscious for four months.

During that time, his wife and parents became his advocates. They could tell when something wasn’t right, even when he couldn’t speak for himself. Twice, they noticed signs of infection in his brain shunt before doctors did. Those observations may well have saved his life.

It’s a reminder to every stroke survivor and caregiver: advocacy matters. Having someone by your side who speaks up when you can’t is critical.

Living With a Shunt

When Mark finally woke up, the road ahead wasn’t easy. He had to relearn how to walk, how to use his left side, and how to speak clearly again. His brain with hydrocephalus was now supported by a shunt that kept fluid flowing.

But living with a shunt comes with its own challenges. Fatigue, the risk of infection, and constant monitoring are part of everyday life. For Mark, the shunt isn’t just a medical device; it’s a reminder of survival.

Yet, as he often jokes, it’s also part of his “sexy bald head.” That humor and the ability to see his scar as a badge of resilience help him keep going.

Music, Loss, and Adaptation

Before the stroke, Mark lived and breathed music. He wrote songs, performed live, and even scored films. After the stroke, he faced the painful reality that his voice and hands didn’t work the same way.

He mourned that loss, but he didn’t stop. With the help of speech therapy, he learned creative hacks like picturing words “on a string” to get them flowing again. With his father a hobby musician, he found new ways to play and create, forming a unique bond through music they never had before.

Even when you lose something you love, recovery offers the chance to discover something new.

The Power of Support

One thing that stands out in Mark’s story is his support network. His parents, both in their 70s, stepped up daily to help with his rehab. His wife became his strongest advocate and found her own therapy in daily ocean swims — even in freezing Atlantic waters.

His local music community also rallied, hosting three sold-out fundraisers where fellow musicians performed his songs while he watched from his hospital bed.

Stroke recovery is never a solo effort. Family, friends, and community form the foundation for progress.

Lessons From Mark’s Brain Shunt Story

Mark’s journey is more than a survival story. It’s a roadmap for others facing the uncertainty of a brain shunt for hydrocephalus or recovery after stroke:

• Advocacy saves lives. When shunts failed, his wife noticed before doctors. Caregivers are vital.
• Recovery is emotional as well as physical. Mourning what’s lost is part of the process — but so is finding new ways to live.
• Community matters. From fundraisers to family routines, support systems carry survivors through the hardest times.
• Resilience takes many forms. Humor, creativity, and acceptance turn fear into strength.

Could a Brain Shunt Help You Understand Stroke Recovery?

If you’ve ever wondered “what is a brain shunt?” or what it’s like to live with one, Mark’s story shows the reality: it’s both a medical miracle and a daily challenge.

“I wasn’t supposed to wake up. But I did. And now, every day, I keep moving forward.” – Mark Bragg

Brain Shunt Recovery: 4 Months Unconscious and a Family’s Fight for Hope

Unconscious 4 months after stroke, Mark’s brain shunt recovery shows how family, music, and resilience defy the odds.

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Highlights:

00:00 Mark Bragg’s Life Before the Stroke
04:50 First Seizure and Diagnosis
13:10 Experiencing Dissociation
19:30 The Day of The Stroke
29:15 Affected Speech Recovery
34:51 Inspiring Other People
44:35 Challenges and Support Systems
57:29 Psychological Counseling and Coping Mechanisms
1:08:38 Positive Impacts of The Stroke

Transcript:

Unconscious 4 Months – Mark Bragg’s Life Before the Stroke

Bill Gasiamis 0:00
Bill. Hey, there. It’s Bill Gasiamis, welcome to another episode of the Recovery After Stroke Podcast. Stroke Recovery is never easy, but sometimes the challenges are bigger than anyone can imagine. Imagine being unconscious for four months after a stroke while your family is told not to expect recovery.

Bill Gasiamis 0:19
That’s exactly what happened to today’s guest, Mark Bragg, a musician, a husband and a father. Mark’s life was saved by a brain shunt, and his story is about resilience, creativity and the power of family and community.

Bill Gasiamis 0:35
But before we dive in, I want to share something that could help in your own recovery. One of the biggest struggles after stroke is getting the hand working again, and stiffness and the loss of movement and the frustration of not being able to do simple things like holding a cup or writing.

Bill Gasiamis 0:53
That’s where the Hanson Rehab Glove by Syrebo comes in. It’s a smart glove that helps retrain your brain and hand together right from your home, whether you’re early in recovery or years down the track. It supports Neuroplasticity and hand function in a way that’s practical and motivating.

Bill Gasiamis 1:11
The glove is available to order right here in Australia and can be shipped internationally too. I love being able to bring solutions like this to my listeners, because having the right tools can make a huge difference. You’ll hear more about it later in the episode. Now let’s get into my conversation with Mark.

Bill Gasiamis 1:30
Mark Bragg, welcome to the podcast.

Mark Bragg 1:33
Happy to be here.

Bill Gasiamis 1:34
Happy to have you here, sir. Tell me what was life like before stroke, what did you do? How did you occupy time?

Mark Bragg 1:43
I’m a musician, and to occupy my time, I barely did anything, because as a musician, your time is very flexible. That’s not entirely true. I would write songs, and record, and tour as well. But since the stroke, currently I’m not cable and performing was my favorite thing, generally, performing like locally or outside town.

Bill Gasiamis 2:19
Was that your full time gig you performed. You were a musician full time?

Mark Bragg 2:25
Yeah, often writing like film scores and stuff like that for like that paid better than writing your own music and selling your own music. But that was the latter, was kind of my passion.

Bill Gasiamis 2:42
So you are fully embedded in all things lyrical, music, notes.

Mark Bragg 2:49
Yeah, well, not notes like, not dots.

Bill Gasiamis 2:53
No, but, but the whole thing, you know, from somebody who doesn’t understand music, you were into the whole entire thing, beginning to end, composing, getting it all finished. I would imagine editing it and then working out all the.

Mark Bragg 3:11
And being a band leader, that was a huge part of my gig as well, which was great. I had a lovely band.

Bill Gasiamis 3:24
Something wrong with your eye?

Mark Bragg 3:26
Yeah, just sometimes the eyes, like, I get watery eyes, but that’s about it.

Bill Gasiamis 3:37
Okay, so then, how old were you when the stroke happened?

Mark Bragg 3:46
48.

Bill Gasiamis 3:50
And would you say there was anything in your awareness that may have enabled you to see that things were not right, that there was something wrong.

Mark Bragg 4:03
Oh, yeah, I from all my seizures for the past few years. I was aware for all of them, and I was aware of what was happening in the stroke itself. I was certainly aware that was happening. I would lose consciousness at some point. But generally I always knew something was going on when either of these events took place.

Bill Gasiamis 4:35
Were seizures, something that happened to you, generally speaking, on a regular basis?

First Seizure and Diagnosis

Mark Bragg 4:41
The seizures were somewhat monthly at one point, but not really on a regular basis. But the stroke clearly was not on a regular basis. That was something that happened after my brain bleed.

Bill Gasiamis 5:03
When was the first time you had a seizure that you know about?

Mark Bragg 5:08
It was June 2019, and that’s when they discovered my AVM, because I was playing with my dog, and then I felt myself, you know, something not right. And then I collapsed and woke up in a hospital, and that was when I got my first scan.

Mark Bragg 5:32
And that’s when they discovered the AVM. And so at this point, that was my first seizure. So we did some consulting with my neurologist, and we decided, I decided I wanted this AVM out any way possible. So what we decided to do was go to Sony Brook that’s the hospital in Canada. So we went up there for a Gamma Knife radiation treatment.

Bill Gasiamis 6:10
And was that successful?

Mark Bragg 6:14
Yes and no. It seemed like, it seemed, at the time, that the that, after a year or so away, that it was looking like that, the AVM was stable, but hadn’t shrunk very much, so the next course of action would have been steroids, but that didn’t show any decline in the AVM.

Mark Bragg 6:46
So after that, I went into it for hyperbaric treatments, which is that is used to treat, you know, divers with the bands, for example. And I think it speeds up recovery from small tissue damage. So that’s as far as I know about it. And when we were deciding to do that, there was always a risk of radiation necrosis, which would be kind of scar tissue from the radiation.

Mark Bragg 7:30
But things were looking good, until about a year later, I was seizure free for about a year. But then another seizure happened, which was the result of that scar tissue, and from then on, there had been, like, various, you know, seizures and like, maybe around monthly and then now it’s always at risk for a brain bleed at that point because of the AVM. So not too long ago, I had my last CV release party, and two days after that, it’s when I had my stroke. And it’s been recovery since then.

Bill Gasiamis 8:21
What year was that?

Mark Bragg 8:25
That was in 23.

Bill Gasiamis 8:38
So approximately two years ago. Did you know the seizures were coming on? Did you have a feeling that the seizure was about to happen, or did they just catch you unawares?

Mark Bragg 8:56
They catch me unawares. But since I was so conscious through the whole business, it would just start happening, and I had no control, and I could still I can see myself doing the kind of shaking and that would be, even be conscious throughout the seizure itself.

Mark Bragg 9:19
I’d be on the ground, like shaking. I feel my legs start to shake, look down, and I’ll be like, when I start I’m having a seizure, like I might be trying to call out for some help, but the like, the words wouldn’t come out, the ones that I’d hoped for. So by after that point, it was kind of game on, and then I was deep into it, and it was terrifying.

Bill Gasiamis 9:50
Uh huh, terrifying, painful as well?

Mark Bragg 9:52
No, no pain. Just fear because you didn’t, you couldn’t control. Anything, and you didn’t know when or if you were going to come out of it, because you didn’t have control of your body, and so how could you know you can’t feel yourself like you got no sense of whether or not it’s going to come out, all you can do is try to convince yourself of the last time was I came out of it after a while. But that doesn’t mean that this time was going to be the same. So you had no way of knowing whether it would be the same.

Bill Gasiamis 10:38
Do they have a rough duration?

Mark Bragg 10:42
Yeah, I believe it was between three minutes and five minutes, but my first one, that was the one that took me into the hospital. I believe was certainly longer than that.

Bill Gasiamis 10:58
We’ll be back in just a moment with more of Mark’s remarkable story, from mourning the loss of his singing voice to rebuilding music and meaning in new ways. But first, I want to tell you more about the Hanson Rehab Glove by Syrebo. One of the toughest parts of recovery is when your hand just won’t cooperate.

Bill Gasiamis 11:17
The glove is designed to solve that problem, gently assisting your hand to open and close, helping your brain reconnect with those movements over time. It supports Neuroplasticity, the brain’s ability to rewrite itself after stroke, if you’re being stuck in your recovery and waiting for something to help at home, this might be it. The glove is available here in Australia, and can also be shipped internationally.

Bill Gasiamis 11:42
Check out the links in the episode description, or head to Banksiatech.com.au, for more details. Now, back to Mark. Okay, and then after the seizure passes, is, do you bounce back? Is there a recovery? How does that work?

Mark Bragg 12:01
Yeah, no, I bounced back, but I’m quite fatigued after the seizure and the following day, mostly just fatigue.

Bill Gasiamis 12:13
And in 2019 that’s taken quite a chunk up of your well, of your time, I imagine, and it’s interfering with the passion and the work that you do, which is your band and your daily life. Did it start to impact daily life? Regularly?

Mark Bragg 12:41
Not so much. My daily life kind of went down because the seizures wouldn’t take. It was like I said. It was only it would take. They would only last about three minutes. There would be around a day of recovery. I’ve never had a seizure on stage or anything like that.

Experiencing Dissociation After Being Unconscious 4 Months

Mark Bragg 13:10
But yes, it just occurred to me that the severe anxiety would certainly take a lot of like it made like everything almost next to impossible. I had a what was called dissociation from the severe anxiety, which, as far as I understand it, to be a protective mechanism, if for severe Have you heard of that before yourself?

Bill Gasiamis 13:44
Dissociation? Yeah, in my understanding of it is in extreme cases, people are not sort of attached to reality.

Mark Bragg 13:56
That’s right. So in terms of my understanding of it based on talking to my psychologist, it’s almost like protective mechanism from bygone days when we were a caveman, for example, and we were being eaten by a lion for example, not like not being chased by a lion, but, you know, being fucking eaten by a lion and and then you can’t be present for that, that’s not possible.

Mark Bragg 14:31
So that’s the way I understood it to be. And also, I suspect, shell shock if you’re in like, ran bombs and stuff and that kind of culture. I certainly know that for me, the dissociation would come on. Like every morning I wake up and think that, and feeling feeling okay, and then I tell myself, hmm. Maybe it’s not going to come on today, because it’s just a mental thing.

Mark Bragg 15:04
And then I go downstairs to put my shoes on, and then I realized that, oh, here we go. The shoes are on, and I’m going to open the door and then going to be this again. So I opened the door and I had that exact same feeling that you described, and but I’ve had to force myself to get through it, like to keep walking outdoors. And by this point, I came back to when I came back home, it’s still it was still happening.

Mark Bragg 15:39
And the funny thing about it is that it would continue up until myself and my wife picked out a touching movie to watch, like one that makes her cry, but not from sadness. It had to be touching. So for some reason that connected me back to myself, and then when I got back to bed. Things were things were fine by then.

Bill Gasiamis 16:05
Wow, man, that is such a cool hack that you even worked it out. How did you work out that the best medicine here is a soppy rom com?

Mark Bragg 16:15
It was bizarre. Yes, it was like a lot of Tom Hanks during those couple of months.

Bill Gasiamis 16:22
That’s enough to make anyone cry. I like it. Okay, so you didn’t watch Saving Private Ryan, for example?

Mark Bragg 16:32
No, I probably wouldn’t watch that anyway.

Bill Gasiamis 16:36
Yeah. Okay, good. I understand. So, what? Forrest Gump then?

Mark Bragg 16:45
Yeah, yes, that’s what we’re talking about.

Bill Gasiamis 16:48
I love it. Okay, I can manage Forrest Gump type of movies, that’d be awesome. Wow, man. So there’s a lot going on there. You’re having a physical experience, say, back then you could feel the actual the seizure. Then when you’re in the seizure, you have an awareness that you’re in a seizure and it’s happening, and you’re out of control of your body, but you’re in control of your mind, your thoughts.

Bill Gasiamis 17:23
And they’re kind of going, This could last forever. We don’t know how long we’re going to be here for panic. Be afraid, be all these things very normal, yeah. And then also after that, then you have to wake up in the morning, and then you have to go to your day, and then you have to overcome the thoughts of this might happen again in my day.

Mark Bragg 17:47
Not the seizure.

Bill Gasiamis 17:51
Yeah, not the seizure? You weren’t concerned about the seizure. You’re concerned about what is going to happen again?

Mark Bragg 17:58
The association. Like, I’d be walking out the door concerned that that would happen. It would happen because I made it happen myself based on it being a mental disorder.

Bill Gasiamis 18:18
But it’s sort of like instinctive at the same time, because you want to protect yourself from the lion.

Mark Bragg 18:26
Yeah, pretty much, because I was afraid that was, that it could happen at any point. So you’re trying to protect yourself from that.

Bill Gasiamis 18:37
Okay, so you’re trying to protect yourself or your mind? Because it seems like you’re protecting the way you’re thinking about that. It feels like you’re protecting the way you’re, you’re observing that somehow.

Mark Bragg 18:55
Yeah, I really have no idea that it was like protecting while it was happening, until it was explained to me by my psychologist, and she recommended that, or she suggested that that would be kind of a defense mechanism for the kind of things I was talking about. But it felt like a war zone when I was outside, because I could be attacked by my body at any second.

The Day of The Stroke

Bill Gasiamis 19:30
Okay, understood. So on the day of the stroke, was it a normal day? You’re just going about businesses per normal. And then what happened?

Mark Bragg 19:42
Then, I believe I was home with my kid at the at that very time, and I started to feel a very strange feeling come over me, and it wasn’t. It felt like it was a seizure, but it wasn’t so. So this was something very different, and so I had enough wherewithal to call my wife when this was happening, and she came home to see the like what I was at, basically because I was afraid, but that was I kind of went out thing, because that was the brain bleed. That was when it happened. So I believe we call we called them ambulance at that point and went to the hospital, and then they discovered that that was the case, so then they had to operate.

Bill Gasiamis 20:48
Okay? So you went into operate? Did they go in to remove the blood vessel, the faulty blood vessels, the AVM, is that what they went to do?

Mark Bragg 20:58
Just give me one second, my wife is

Bill Gasiamis 21:02
Your assistant.

Mark Bragg 21:09
Yeah, so then it was an EV drain that was kind of installed in my brain to drain out the blood here’s the scar from my EV train, yeah, it’s part of my sexy bald head. So that’s, yeah, that’s one of my scars.

Bill Gasiamis 21:30
That’s a really well shaped head.

Mark Bragg 21:33
Oh, my God, that’s why, that’s why I get away with all this. Those scars are our best kind, but my shunt itself is magic.

Bill Gasiamis 21:44
Yeah, so you’re in hospital, they’re draining the blood, and are you other than the initial bleed that issues that obviously blood in your head causes and the drain that they put on there? How long is the hospital stay. What is the prognosis? What happens after the bleed in the brain?

Mark Bragg 22:06
My prognosis was not good. I was told my family was told not to expect a recovery, and that I was unconscious for about four months.

Bill Gasiamis 22:25
Wow, yeah, was that a medical induced coma, or was it a Mark Bragg induced coma?

Mark Bragg 22:34
It was a mark Bragg induced coma.

Bill Gasiamis 22:36
Wow, man. So then, how do you come out of that? What happens at the four month mark that makes you wake up?

Mark Bragg 22:46
The third shunt took like the first two, they could tell or sorry, they became infected. But I was added with it anyway. But somehow I was noticed that I still wasn’t myself. It was kind of magic, like I was completely fucked up. But even while unconscious, the she could tell that at that point that it wasn’t me. So this was the first time my shunt became infected. So then the second one also became infected, and the third one took I get work.

Bill Gasiamis 23:33
Okay, so the idea of the shunt is to do what? What Is it meant to do?

Mark Bragg 23:39
It keeps things flowing. It basically sends it down, as opposed to getting caught up there.

Bill Gasiamis 23:56
Okay, allows the cerebrospinal fluid to continue to flow and not stay in the head, therefore causing additional pressure, and putting your brain at risk. Okay, so after surgery, the solution is to install a shunt, and then that shunt doesn’t take it gets infected in that time, even though you’re out cold, your wife is so great. She’s so amazing that she noticed that even in your comatose state, you were not yourself.

Mark Bragg 24:33
Like having an advocate.

Bill Gasiamis 24:38
And you think you are good, like, Oh, my God.

Mark Bragg 24:42
I’m good, not as good as her.

Bill Gasiamis 24:46
No chance. And then, it happens a second time. She again, and the doctors and everybody notices that the second shunt that they put in is not taking and is also infected. And I imagine, during. Infection that’s really impacting you negatively, personally, your body, your brain, your whole system, is absolutely coping with all of the all of the trauma plus the infection.

Mark Bragg 25:12
Yeah, there’s a lot going on there.

Bill Gasiamis 25:14
And then the third shunt takes, wow, isn’t it amazing that we are even here talking?

Mark Bragg 25:25
It is I was not meant to be here talking. No way.

Bill Gasiamis 25:30
I would say you were meant to be here talking.

Mark Bragg 25:33
If you say so.

Bill Gasiamis 25:34
Yeah, because all of the stuff they had to go through to get you over the line, these people who you’ve never met before, and not even the doctors and the medical guys, like even the person who invented the shunt, even that person, what the hell is that? Who does that?

Mark Bragg 25:54
I know I never thought about that myself, but you’re right.

Bill Gasiamis 26:02
Let’s just put something in the guy’s head and make it help things flow. Why not just it is just fascinating to me. I love that idea. I love the fact that that is even possible, and all these things conspired to get you here.

Mark Bragg 26:22
Yeah, it’s amazing.

Bill Gasiamis 26:25
That’s a good thing. That’s great. It’s a great outcome. I really love it. So then when you wake up after four months, do you have first thoughts? Do you have any idea what’s going on, what happened, what you’ve been through.

Mark Bragg 26:42
It was, it’s, funnily enough, I was still nice there messed up, but I had, I’m there were people coming and going and but there was an old friend of mine who said something like, the first thing that I remember and feeling like I was going to be okay was this friend of mine saying something ridiculous about an old girlfriend of his that he used to harp on.

Mark Bragg 27:06
And then I used to always give him piss over it. And then he said, so again. And then I was like, well, you thought fucking talking about Jane Scott, for example, and and then we started laughing at it. And at that point, I kind of realized that I was going to be okay.

Bill Gasiamis 27:41
How long did it take for you to get back on your feet? Because I imagine if you’re lying still in a bed for four months, everything gets weak, the muscles stop working and rehab.

Mark Bragg 27:56
There’s a lot of you know, trying to get the brain’s connection back to your ligaments, like trying to get, like I noticed. The first thing I noticed, like as I was coming back, like his hands, like scratching on the couch, and then somehow I managed to have somewhat of control over that. So that was after, after rehab, when I was home.

Mark Bragg 28:35
Of course, there was a lot of gains made in rehab as well, which were great, like we did tons of work in rehab, about mostly work on my left side, which was impacted more so than my right. But there were the phase heroes. There were amazing. So you can add those to your list of incredible people that get me here, and the OTs and all that stuff that was also huge part of the rehab and the recovery.

Affected Speech Recovery

Bill Gasiamis 29:15
The team, the teams that get together To make somebody go back home is just unbelievable. So your speech was also affected?

Mark Bragg 29:32
Yes, it was that’s getting a lot better the more I use it. And funnily enough, it can almost sometimes get downright normal, unless I’m, you know, trying to talk loud or interject myself in a conversation, which I always had the skill to do with no problem at all. But now as I talk louder, it kind of comes back a little bit. And if I’m talking, you might even know it now that it becomes more halted, because I’m concentrating on it, which is a strange brain thing.

Bill Gasiamis 30:16
When you’re paying attention to it, it kind of gets a little more labored. But when you’re not aware of it flows better.

Mark Bragg 30:24
When I hear something hilarious that I learned in speech therapy. It was one of the things we were taught, was that if you’re having trouble with your words, picture them on a string and pretend there was make them one work. So one of the first things, one of the first videos I made when I got home was one of the things I stumbled over was some, for some reason, I was saying all this eggy shit when I was cooking something. And so what I did was I pictured it as one word, all this eggy shit.

Mark Bragg 31:04
So I practiced that as one word, all this hanky shit. And then that one came back to me. So anytime when I was going around chatting with people, and I’d get those halted things happening, I stopped trying to picture them as one word and be able to get, like, somewhat Get it together. Like, just say, I stumbled over that. For example, some might get it together, some might get it together, some might get it together. You might even hear that change as it goes, change as it goes. You might even hear that change as it goes. Change that’s cause. So I just picture them as one word, it’s fascinating.

Bill Gasiamis 31:50
It is fascinating. How do you who works, who worked that out? How do you work that out?

Mark Bragg 31:57
I kind of in some ways. It was a speech therapist who had the who demonstrated these kind of words on a string kind of thing. But it was when I got out of that therapy, I realized what she meant by that, and then when I started to interpret the meaning to be, create one word out of a bunch of ones that you stumbled over.

Mark Bragg 32:30
Create one word, create one word, over a bunch you stumbled over, over a bunch you stumbled over. So I practice them every time it would happen. And so I was able to interpret that words on a string and the kind of graphic she gave me, that that’s what she what she really meant, and to make it work for myself.

Bill Gasiamis 32:53
Profound, amazing. I love that. I love that that hack that way to solve that problem, right? Such a cool hack. You seem the really upbeat kind of guy, but this was really a tough time. It was there any moments where you thought, Oh, this is really terrible. I don’t want to be in this situation. I want my old life back. Did you have moments like that?

Mark Bragg 33:23
Yes and no, I was never, I kind of never lost my like, I didn’t change at all. But there would be, I’d certainly have hard moments where I felt like I didn’t like it was hard to be this way, but by and large, I was helped to, like I hit acceptance not didn’t take me as long as some some might, because I had had, I went through All of that stuff with the dissociation, and stuff had therapy through that, and I’ve learned all those skills prior to the brain bleed.

Mark Bragg 34:10
So I was able to use those skills after the brain bleed. And there was certainly a mourning process for the functionality that you have lost, but that after you mourn it, it’ll turn to acceptance, which I did, and I was able to kind of enjoy certain aspects of it, like the like putting out videos of my games and stuff like that and that, because I’m a little bit performative anyway, as was my career.

Inspiring Other People

Mark Bragg 34:51
So I did enjoy sharing videos about my rehab and people I think I. People would always share that it was helpful for them. Like, if I’ve taken a video of like me kind of trying to dance, for example, I get messages on Facebook about you just inspired this 90 year old woman to get up and dance for the first time in a long time, so I’d get a lot of that kind of feedback.

Bill Gasiamis 35:30
Wow, man, it’s interesting to to note what you just said about your crazy need, desire to perform in any way possible. But that’s very selfish, selfless. That’s about you more than anything. However, in that moment when you make it about you and you turn it into a performance, you involve the other person, but then what also happens is you inspire people you didn’t know you were going to inspire.

Bill Gasiamis 36:15
It is the classic musical experience. I go to a gig, you’re performing. You want to entertain your you want to perform. You want to be you want to do you. You want to express yourself in this way on stage. And then I get I somehow become part of the act. I couldn’t be part of the act on the stage. It wouldn’t work.

Bill Gasiamis 36:40
If I turned up to a gig and stood on the stage, I wouldn’t be able to create the loop that needs to occur for the entertainer and the audience to interact the way that we do. It’s huge, and you’re doing that somehow is seen by somebody who is 90 years old and thinks that I just needed to see Mark doing his stuff for me to feel inspired to do my own stuff like it’s very interesting that that happens.

Mark Bragg 37:13
I find it interesting. It’s it’s a bummer for me, only, mostly in the sense that it’s not a live audience, because you don’t get that same kind of energy, but in a way, saying that is kind of foolish, like I certainly wouldn’t want to go out and perform my recovery, because that’s not, that’s not what I do, but, but it’s, yeah, it’s kind of silly, but I do know what you’re saying, and I enjoy it.

Bill Gasiamis 37:47
Yeah, it’s not about performing your recovery. It’s just about performing in whatever way you can. And therefore, it’s all tied into your recovery just because you’re performing in your current with your current ability. Yeah, and then, because people know your story encourages another person to take a recovery of their own in some way, a little way, you know, even if it’s not a stroke recovery, but say it’s just an old person’s steady decline to get up, yeah, that and move at nine after whatever they’ve been through, that’s a huge step.

Mark Bragg 38:31
Yeah, I appreciated all the feedback I got with from that stuff. For sure, I didn’t set it to inspire by any means. It was just kind of a random, random thing that people seem to share with or want to share with me as an entertainer.

Bill Gasiamis 38:57
What do you set out to achieve, actually? So my son, I’ve noticed my son, I followed my son discover guitar and then go on to play in bands and perform and do all that kind of stuff. I’ve never asked him this question, but I think I will. He’s 29 I’m going to ask him next time I see him. But what do you set out to achieve when you pick up an instrument and then find yourself on a stage. What’s the purpose of it?

Mark Bragg 39:26
For me, mostly in terms of songs. I write fiction. It’s kind of narrative songwriting as opposed to confessional. So I want to get up on stage and kind of relay or evoke the feeling of the kind of characters from that song. Not it’s not like acting per se, but it’s like the energy that comes from that story is, I want to try to do it justice.

Mark Bragg 40:00
So it there’s a whole lot of bombing around stage, screaming and like, it’s generally a high impact show, and so it’s quite fun in that way. So a lot of this material, and I do intend to make another album. It’ll it won’t look like that, because that kind of show is kind of pre stroke show. I do write kind of softer material as well, well, and I’ll likely be focusing on that going forward.

Mark Bragg 40:42
Another strange thing that happened to break this stroke. I I always, I never, ever expected to lose my singing voice, because you can keep that up into your 80s. But, like I learned about both vocal tremor, so that kind of messed it up a lot. Let me just demonstrate, so it’s ease, and it’s a not weird, so I can’t see my E’s and my A’s anymore is totally weird, and I was very disappointed about that, not not even disappointed.

Mark Bragg 41:26
But I kind of had to mourn that, mourn the loss of my musicality. Wasn’t just singing, it was also being able to play piano and guitar. That, though that said, with the work I’ve been doing, that starting to come back to some degree, but I found it really strange that this step to lose that type my singing.

Bill Gasiamis 41:53
You have to recruit some other vowels into your notes so that you can can You do a track that excludes A’s and E’s.

Mark Bragg 42:03
Yeah, well, I thought about that, but I don’t think it’s going to be necessary. I think if I lower the pitch from some of these songs, I might be able to work around it.

Bill Gasiamis 42:16
You might be able to.

Mark Bragg 42:19
I might be able to present it in a way with the tools that I have, it’ll work.

Bill Gasiamis 42:26
Yeah, so it’s interesting that you say that you want to evoke a feeling in your audience, and what you’re doing is you’re using your voice, you’re using your body, you’re using movement, you’re using the whole lot and and then you get people like Adele, who just stands on the stage and just blows everyone, yeah, everyone’s mind, body and soul, by singing the way that she sings, without but now that I’m thinking about it, she is also using her body. She’s also, no doubt, taking doing almost exactly what you’re doing. It just looks different because, yeah, it seems like it’s more stable.

Mark Bragg 43:13
Yeah, different material. Her material likely calls for the kind of vibe that you just described.

Bill Gasiamis 43:30
Yeah, and it’s I imagine once you do that, once the first time in your life when you nail it, that first time in your life, you know what it feels like to have achieved that with your audience, and then that’s it.

Mark Bragg 43:49
I lost my mind. Yeah, there was no turning back. I lost it. It was so amazing, that little bar in Newfoundland,

Bill Gasiamis 43:59
You know where you were. You know when it was. You know what happened, yeah. So your wife is now your personal assistant helping you remember things that you need to know, to share in the interview. For example, that we’re having right now were there other people that came to your rescue, that helped you out, that supported you kind of overcome this, as well as your wife.

Unconscious 4 Months – Challenges and Support Systems

Mark Bragg 44:35
Let’s tell talk about my parents. They’re like in terms of the amount of support they gave. They’re both 70 plus, and now they’re taking care of their 40 plus year old son while raising his brother who has autism. So they are incredible.

Mark Bragg 44:59
My dad is here every evening doing the physical workouts, and my mother is here quite often to for sleepovers. So if, if my wife needs to get a night out, which she does quite often, because I’m up to piss about 20 times a night, so she doesn’t get any sleep. So once a week she’s able to get some sleep. And my mom comes down for that. She’s on hand, generally for most anything.

Bill Gasiamis 45:35
I love that you guys have worked that out that it’s really important for your wife to get out of the house.

Mark Bragg 45:40
Yeah, it certainly is she. She also swims in the ocean like every like, all throughout the year, so it’s ridiculous, like the freezing North Atlantic.

Bill Gasiamis 45:56
Yeah. How cold does it get?

Mark Bragg 46:01
Minus three.

Bill Gasiamis 46:02
Oh, my God. How long did she swim in the waterfall?

Mark Bragg 46:10
Five minutes. That’s when it’s that cold, but longer if it’s not.

Bill Gasiamis 46:16
Wow, that’s nuts. Congratulations.

Mark Bragg 46:20
Bill says congratulations, but yes, she comes back a different woman. So it’s something I encourage very greatly.

Bill Gasiamis 46:38
It’s therapeutic in many ways for a lot of people.

Mark Bragg 46:40
Yeah, that’s what they said. I won’t be doing it.

Bill Gasiamis 46:44
I won’t be doing anything. I couldn’t imagine anything worse. Ah, just forget about that. If I, if I get stuck in the wilderness, I want it to be hot and I want to die of dehydration, not the cold. I don’t want it to be in a I don’t want to get stuck in a an ice cap on some mountain that thaws out in 1000 years and they find my crinkly body. I don’t want to be that guy.

Mark Bragg 47:13
I want to be be floated out on an ice pan so that I go that way, either that or one of the other very fast ways and non magical, non romantic ways to die. I’ll take one of those.

Bill Gasiamis 47:30
Just switch the light off. I’m just thinking about that, and it really does evoke pain and suffering when I think about the cold and being in the cold. I just absolutely hate it. It’s cold here in Melbourne at the moment, and it gets down to about overnight, four minus, sorry, four or five degrees Celsius, so not quite freezing, but and some mornings, you know, might get down to zero, and I just can’t get going, like it just takes ages for me to warm up and get going, and my left side gets even colder, and I feel it at night.

Bill Gasiamis 48:05
The entire rest of my body is warm and normal and calm and relaxed, but my left side, which is my affected side, just feels colder, even though the heater is on, even though it’s set at a temperature that’s extremely comfortable inside the house. My left side still gets cold. So, no, it’s not purple or anything. It’s not a different color. It’s just colder.

Bill Gasiamis 48:37
I don’t know. I didn’t get it. Nobody’s been able to explain it. I’m not expecting them to, but it’s a bit, it’s a bit strange. So I, I take my hat off to people who do those cold plunges. You know that are becoming popular now, yeah, and Wim Hof how he’s made millions telling people to go into cold bathtubs and all that kind of stuff and whatever. Man, that’s not for me. I can’t do but I appreciate other people doing it. Take my hat off to them. So your dad comes every night to take you through your rehab.

Mark Bragg 49:15
He used to go to the Miller center. Watch what they were doing, take notes, and then it start. Once I got discharged, he started showing up every night to repeat or to interpret those notes. Funny, story about the first time we set up to do that is he set up when the first time I climbed the stairs in my house. He had rigged up a pulley system, much like the one that you have if.

Mark Bragg 49:59
You were painting on a roof, you picked up, hooked all that stuff up, and shot me in and had one spotter, and then I made it up through the top of the stairs on these pulleys for safety. And it was just way too hilarious, but it was also exhilarating at the same time, because I made it up those steps. But, you know, moving forward, we were able to repeat that, that stuff, without a need for all that stuff. But it was, it was pretty incredible.

Bill Gasiamis 50:38
Your mom and dad been looking after your autistic brother. Is your brother able to be independent in any way? No, okay, so they’ve been solving problems, difficult problems, for a long time. Anyway, they know all about it.

Mark Bragg 50:55
They’re not technically looking after him right now, because he has caregivers and but they’ll still like to ensure his quality of his life. They’ll still take him out on outings. Like to do things that he loves to do, like riding bikes and going to like, hit their out of town cabin and giving them meaningful tasks like moving rocks and stuff like that. That’s pretty, that’s pretty. Like, hats off to them. That’s amazing. So fortunately, we both basically had an amazing upbringing, and we’re lucky to have done so, and now we’re still two little kids being looked after by our parents as adults, and they’re way seniors.

Bill Gasiamis 51:53
Yeah, it’s just that’s so good that they’re able to be able to perform that function, you know, to be able to do it at their in the in their older age, there’ll come a time where they’ll need to step back more and more. But wow, what a job they’ve done so far.

Bill Gasiamis 52:15
I remember my parents as well. You know, I was 37 they were in their 70s, early 70s, when I went through my first, second and third bleed. And they Yeah, they were just all over, all over it. They were just rallying around and doing all the things to do. Luckily, we lived close to each other. Do you live close to your parents as

Mark Bragg 52:47
15 minute drive.

Bill Gasiamis 52:52
Okay, that is close. Okay. Should I believe anything you’ve said so far?

Mark Bragg 53:01
Mostly.

Bill Gasiamis 53:01
Yeah, because you’re very convincing. Even if they were all lies that you’ve said so far, it’s all convincing. So I’m good with that. Yeah. So what were some of the biggest challenges that you faced, some of the biggest things that tested Mark Bragg, you know that really kind of went after you.

Mark Bragg 53:25
I think I didn’t have a ton of anxiety, per se. I’m not quite sure if it’s because of the skills or if it’s because of the drugs, like, who knows, but hopefully it’s the skills I’m talking about post bleed now, but the like prior bleed, it certainly would have been that dissociation, which I’ve described already, but post bleed, there was occasional moments that were certainly emotional when when the healing would pause or when it would slow down.

Mark Bragg 54:13
And coming to the realization that your music career as it was, is gone, but you know, it might be back in some, some way, shape or form. Well, it certainly will be, but that was kind of an emotional thing to deal with. But I do believe that in a lot of ways, I’m luckier than most, because I’ve had a lot of support.

Mark Bragg 54:46
I don’t know. I’m quite sure there’s people out there who’ve experienced similar things, who don’t have the same level of support that I do the support network. Work which I think that that would be quite hard, but I’ve been really well taken care of by my family and the medical professionals. So I’ve gone, what was your question again?

Bill Gasiamis 55:18
That’s okay. It was, well, what were the things that tested you the most? You answered that and then, and then you kind of gave me a reason why you’ve been able to get through that. And the people who have been through something a little harder or had less support, etc, also report finding ways to get through, finding ways to overcome, and even though they may not have that type of support that you mentioned, with regards to the people that were around you.

Bill Gasiamis 55:50
They were still able to access somebody who stepped up for them, or they were still able to make meaningful relationships with people that turned up out of nowhere. That’s some of the really cool things you hear. Some stroke survivors who don’t have the type of family support that we might have experienced will say that out of nowhere came people that they never thought would or expected with food, you know, with can I help take you to one of your appointments or whatever.

Bill Gasiamis 56:23
So you do see these amazing things occur and people step up when you least expect them. Just it just says a lot about community, right? Being somewhere where you have embedded yourself, and you get to know people, and people get to know who you are and get to see you. And as a result of that, that that create, creates an opportunity for people to step up out of their usual routine and do something for somebody else. It inspires that.

Mark Bragg 57:00
Yes, I should also note that in my music community, they organized fundraiser for me with three sold out shows, and they were all people performing music from my catalog, and I was in the hospital, watching the live stream on my laptop, and that was pretty magical, too.

Psychological Counseling and Coping Mechanisms

Bill Gasiamis 57:27
Yeah, that would be amazing. That would be so inspiring, and also create a lot of hope. You’re in hospital, and the people are all these people around, rallying together for you. That would have been a real motivator. How has psychological counseling helped you? I’ve been to counseling from the age of about 2728 and I still go. How has it helped you?

Mark Bragg 57:56
Mostly skills, how to observe your thoughts and respond to them, as opposed to react. Those were the biggest takeaways, and they take it takes a lot of practice and learning that you have to practice that in order to use those skills, that was huge for me.

Bill Gasiamis 58:27
Yeah, how? How long have you been? Been going to counseling.

Mark Bragg 58:37
Four years, for roughly four years.

Bill Gasiamis 58:39
Okay, so the first time you started to encounter some of the challenges that you’ve been through, Exactly Okay, and they was that essential to help guide you through this difficult time.

Mark Bragg 58:55
It was essential.

Bill Gasiamis 58:59
What does the counselor offer that your spouse doesn’t?

Mark Bragg 59:04
Well, she’s professional, yeah, so that it’s nice to have a professional to talk to about your You know, what’s you know here? And funnily enough, this, this particular counselor that I had is specializes in medical trauma, so she really knows what she’s talking about when we’re talking about medical related, you know, trauma, traumatic events.

Bill Gasiamis 59:41
Yeah, I love that. And your wife is not it’s not her expertise, and that’s not your wife’s expertise. I’m trying to paint the picture as to why it’s necessary to see a counselor, as opposed to try and get all of that from a spouse. Because our spouses, my wife, she had no idea what stroke was. When I went through it, she had no idea how to care for somebody.

Bill Gasiamis 1:00:06
She had none of that stuff. We had never done that, um, caring for kids completely different to caring for your incapacitated adult husband and and and then if I had to lay on her all of the psychological stuff as well. It would have been a massive burden for her to have to shoulder and to try and navigate because she didn’t have the skills right.

Bill Gasiamis 1:00:35
And I found that the counselor, for me was able to do the same kind of thing, is give me tools and skills and help me have a perspective that I wasn’t able to have in the home. You know, while we’re all going through it, taken out of the home, in her office or in her practice, she’s able to allow me to observe our situation and have a greater, more broader perspective than one that was narrow.

Mark Bragg 1:01:06
Yeah, I like having my wife be my wife as much as I can, and caregivers and medical professionals to provide that kind of care, I’d sooner, I mean, because obviously this kind of injury impacts your marriage in a lot of ways, because you need, like, a lot of a different type of care and a lot more care, and Then you’re also not able to do a lot of things that you would have been able to that may have been your responsibility before, before just the medical event. So as much as I can, I mean, this can’t always be the case, but as much as I can, I try to separate the kind of professional care I got from anything going on at home, because I’d rather be a husband than a problem as much as possible.

Bill Gasiamis 1:02:17
Yeah, I totally relate to that you’d rather be in your normal interaction with your wife in the house, you know, for example, and then outsource the medical stuff to the medics, the psychological stuff to the psychology people and so on, so that everyone has the task that’s specific to their capabilities and skills.

Mark Bragg 1:02:42
Yeah, there’s certainly a lot of or crossover too, but by and large, exactly what you said.

Bill Gasiamis 1:02:52
Yeah, and the crossover is necessary. There’s no way you can navigate stroke at home with your wife without talking the medical stuff or without needing some kind of little support or intervention or whatever that’s medically related. There’s no way you can do that, but I totally get it so how, how mobile are you these days with your affected side is, are you up and about?

Mark Bragg 1:03:22
Yeah, somewhat, it’s getting better all the time. I very I haven’t touched a wheelchair in ages, which has been pretty great. I’ve I’ve somewhat graduated to a cane from the Walker, and then part of my exercise routine is hobbling around on my two feet with no devices, and that’s so fun.

Mark Bragg 1:03:49
It’s just like you’re like, you’re a little toddler again, and like, I used to call it like my little like dad’s little duckling, because the foolish rock you do while you’re learning how to walk again, there’s I was so surprised that, well, not surprised, actually, but I found it hilarious when I did an Instagram video of me and my Friend walking around to 500 miles by The Proclaimers, I would walk 500 miles like that, that song, and then, and that was great fun in and of itself.

Mark Bragg 1:04:31
But then, if you watch it, you get your algorithm gives you suggestions to search for more funny baby videos. I couldn’t believe it. I was way too good for dancing videos, because we were goofing around, dancing, in essence, and I looked like a toddler. So I found that one Hello. It is, but it was great.

Bill Gasiamis 1:05:02
So you’re learning how to walk all over again, yeah. And it’s improving.

Mark Bragg 1:05:09
It is, yeah.

Bill Gasiamis 1:05:13
Improving a lot. And you’ve been months out of a wheelchair, and you went, you started from the wheelchair onto the walker and now onto a cane.

Mark Bragg 1:05:24
Yeah, as much as I can sometimes, like, if I’m waking up in the morning, I’ll need the walker first, you know, until, well, actually, I’m using basically nothing, because I’m essentially in bed the first half of the day because of all the drugs I have to take. But that, by and large, that like drunk drugs aside, I’ve that is kind of a graduation, like the ones you mentioned, yeah, like Walker came, and then wheelchair Walker came, and then independently walking.

Bill Gasiamis 1:06:08
Yeah, very cool. Tell me about all the drugs that you take. How what for? How many of them are there? And why does it take so long to to have the whole to go through the routine?

Mark Bragg 1:06:19
I can’t remember the amount, but the cocktail is mostly anti seizure meds, and they seem to be working, because I haven’t had a seizure in little, little over a year, which is huge for me, but kind of at the expense of fatigue, like throughout the first half of my day. But that said, Where seizures beget seizures like no seizures also, the opposite is also true. So if I go a year without a seizure, it might my neuro might deem it safe to be to slowly start weaning me off some of the pills, and maybe some of the pills that create this kind of fatigue.

Bill Gasiamis 1:07:15
Okay, so the blood vessel, the IVM, has that been sorted now? Because when you were in hospital, they had the shunt in your head. Is the blood vessel after the radiotherapy gone? Or is it still there one second? Are you running out of battery?

Mark Bragg 1:07:36
Yeah, I’m just gonna get that sorted out here. Yeah. You go ahead and talk and I’ll get it sorted. Okay, yeah, she’s gonna throw it out behind the scenes. George, what was the question about the AVM?

Bill Gasiamis 1:07:53
Yeah, so the actual AVM is it still there? Has it been resolved? Is it being gotten rid of after the radiotherapy?

Mark Bragg 1:08:03
We haven’t looked out of it in a while, but it is still there. And after having one bleed, it actually puts you at more risk for a second. But that’s that’s all, that’s all you can do about it, not not safe to do anything further. So basically, it’s just, this is the way I’m living right now. It’s, you know, it’s a risk. There’s also a risk to cross the street. So there’s so many ways to look at that stuff.

Positive Impacts of The Stroke Despite Being Unconscious 4 Months

Bill Gasiamis 1:08:39
Absolutely, and it’s probably in a spot that’s too hard to get to or too hard to do anything about, so it’s better to leave it there and monitor it, rather than try and go in and take it out and potentially make things worse. Yeah, yeah. Understood. Do you see the stroke as something that has shaped you in a meaningful way?

Mark Bragg 1:09:10
It changed my relationships a lot with my loved ones, and that’s quite meaningful for sure. And of course, it taught me a lot of things. It also kind of puts you, makes you a part of another, another community that like those with epilepsy or stroke survivors or almost any kind of things like that. And especially meaningful have been that the fact that I never understood anxiety and panic attacks.

Mark Bragg 1:09:47
I basically thought anxiety was stress and panic attacks was not being able to handle stress, but I certainly learned that it’s way, way. A different thing than that. So part of these medical my medical events, like that kind of stuff, wouldn’t have happened without my current medical events for sure.

Bill Gasiamis 1:10:14
You’ve become more empathetic. That’s really cool. I mean, that happens habits a bit as well, and it’s interesting. I’ve seen people have panic attacks, and it is, yeah, so strange and bizarre, and they’re all consuming. And as an outsider, it’s just like, well, what’s going on? Calm, breathe. Try and get them through. Yeah, I still don’t understand it, because I’ve never had one. I can’t say a panic attack. Okay, so it has been meaningful in many ways, your relationships. How did they improve? What did Did you do something to improve that was there areas that were lacking and you needed to work on and it made you work on them. How did that happen?

Mark Bragg 1:11:01
It might be kind of funny and embarrassing at the same time. My relationship with the old man, my father, took a full 360 we all. We always had a good relationship, but I didn’t see much of them. But this like we hang out every night now, and in kind of a hilarious way, like, I’ve been a professional musician for over 20 years, and he’s, like, been a hobby musician for maybe little over five.

Mark Bragg 1:11:36
So I’m in a musical way, our paths didn’t quite pass, or sorry, paths didn’t quite cross, so but during baymon gym, oh yeah, I gotta point out that Jim does not mean J, I, M, it’s not a name is G, Y, M, as in gymnasium. I don’t want people to think I’m off calling my dad Jim, because I’m not. But so we can’t in certain avenues. We kind of met in the middle because I had the music knowledge.

Mark Bragg 1:12:15
But I couldn’t operate my left hand very well, so we wound up jamming on all these songs, whereas dad doesn’t have like he’s a hobby musician, so he doesn’t have the same kind of music acumen that I have, but my hand doesn’t move as well as it should. So we kind of learn from each other in that regard. I find that hilarious that I got, and a bit my it took a stroke for me to start a band with my old man.

Bill Gasiamis 1:12:48
That is a bit hilarious. So your dad has got the all the will and the enthusiasm, you’ve got the knowledge and the and the foundation and the fundamentals, your hand doesn’t quite do what it was doing beforehand, as far as you know, helping you deliver the notes, but your dad has got the ability to deliver the notes. So together, combine all your strengths, you get something pretty cool.

Mark Bragg 1:13:22
Yes, we get something. Let’s just say we get something.

Bill Gasiamis 1:13:26
I love it. I love it. So what? People who are listening, right? Do you have some words of wisdom, some, some philosophical genius that you can impart on our listeners, the people watching on YouTube about how to navigate this whole crazy thing that they might be experiencing?

Mark Bragg 1:14:01
God, no.

Bill Gasiamis 1:14:07
We should pause. That’s probably one of the most profound statements I’ve ever heard. Honestly.

Mark Bragg 1:14:17
I mean the like, I think people figured out, like, who might tell somebody how to like, you know what to do. One of the things I hate the most is anything you need. I’m here for you. Like, that kind of puts the onus upon you to find out what you might need, and makes the person you’re trying to help.

Mark Bragg 1:14:47
Like, think about it which it puts them, it gives them a task in a way, like, if you want to do something for somebody, just do it. Yeah, that’s something I found really helpful. And also I was surprised at when I was, like, in my recovery, the like people reaching out, who to, you know, connect and to get offer their support.

Mark Bragg 1:15:25
And because there was so much of that going on at that time, I found it kind of hard to part like I was curious as to why, you know, people I didn’t see on the day to day would be reaching out to do so, because I wanted to hear from, you know, my friends and family so and I had, there was a lot of people reaching out because they thought it was the right thing to do, but it was annoying.

Mark Bragg 1:15:58
Like you only have so much time to to kind of like, healthy time, like, there’s, there’s a lot going on around that, like a lot, so to put somebody in the driver’s seat and make them think about what they might be able to do or help or even to acknowledge their messages when you’re in a mess and all you want to do is see your loved ones and your very close friends for their support, and then you get a deluge of people reaching out who want to connect with you at the same time. It was hugely annoying.

Bill Gasiamis 1:16:46
Yeah, the the guilt and the I better call because I feel guilty because I haven’t called people difficult, people to to navigate. For sure, I have a friend of mine who has probably done the most for me, as far as my friends goes, probably not, not, not that he’s done the most he doesn’t, but he did something really amazing and unexpected, and it was great now, but for three years, he’s been saying we should catch up.

Bill Gasiamis 1:17:26
And I’m like, dude, Christine and I, we have adult children. We are free all the time with half a day’s notice. We could drop everything. We could change all our plans, and we could go wherever you needed to go. We could catch up. But you’ve been telling me that for three years.

Mark Bragg 1:17:45
We don’t need to catch up ever like if you’re if you were good buddies, you can pick right up where you left off as soon as you see the person.

Bill Gasiamis 1:17:56
Which we tend to do. The thing is, I can’t get him. He can’t. He can’t move beyond the thought of, we should do something, go somewhere, spend some time together. He can’t get past that and do the next stage, which is commit to a day and a time, etc. However, I guess, no, he’s a he’s a great guy. I don’t know what his bloody problem is, but this is what shits me the most.

Mark Bragg 1:18:21
He’s done all this stuff for it. I forgot about that. It didn’t mean to call him a dick but he’s clearly such a.

Bill Gasiamis 1:18:29
He’s very compassionate, very supportive, very helpful, and in his own way, he stepped up majorly, right? And I wasn’t expecting it, and I didn’t, and I’m really grateful for it. However, when he interacts with me, it’s always lovely, except it’s always on the phone and yeah, we both have a desire to catch up in person with our spouses, with the kid, with all that kind of stuff, but he can’t just commit to the date and time ever, and it’s bizarre and strange.

Bill Gasiamis 1:19:01
However, what shits me the most about him is that he’s turned up to a funeral of somebody in my family, which is mental that I in three years i i caught up with him at a funeral which shouldn’t be the place where we’re catching up with people. And then the other thing was, because I’ve painting company, he got me to go over to his house and paint some walls. Yeah, that’s not how I don’t want to catch up with you like that, man, get another painter and don’t come to the funeral.

Mark Bragg 1:19:39
That makes perfect sense. The way, some people kind of see the world, little bit creepy sometimes.

Bill Gasiamis 1:19:53
I think it’s a bit strange. Anyhow, how have you sort of reshaped your purpose in life. What’s life about now?

Mark Bragg 1:20:10
I don’t think it’s really changed.

Bill Gasiamis 1:20:12
Okay, good.

Mark Bragg 1:20:16
My work has changed, and family life has changed only in kind of a practical sense, because because of mobility and stuff like that, and a few of the things I used to really enjoy will not quite it’s much harder to get to them, but that’s which is a bummer.

Mark Bragg 1:20:45
But, you know, I never had problems making friends, and I’ve had a lovely love, lovely caregivers come and go, which has been great, like they’ve all been best kind so, so it’s fun. Yeah, I don’t have hasn’t changed greatly. I don’t get to hang out in coffee shops as much as I used to. That’s kind of my coffee shops and bars. I haven’t been able to do that as much. So I guess that’s mostly how life’s changed.

Bill Gasiamis 1:21:22
Yeah, I love coffee shops and bars. Yeah, works for me. I hear you. Man, Mark, I really appreciate you reaching out. It is so nice to get to meet you and get to learn a little bit about your story. Thank you for joining me on the podcast Man.

Mark Bragg 1:21:37
Same, appreciate it.

Bill Gasiamis 1:21:40
Well, that was Mark Bragg, a stroke survivor, musician and proof that recovery is still possible, even when the odds are stuck against you, four months unconscious, multiple failed shunts, and yet, here he is walking, talking and creating again. If you found this conversation helpful, remember to subscribe on YouTube Spotify or Apple podcasts, leave a review, share it with somebody who needs to hear it. And if you’d like to go deeper, grab a copy of my book.

Bill Gasiamis 1:22:09
The Unexpected Way That A Stroke Became The Best Thing That Happened. You can get it at recoveryafterstroke.com/book, and before we go, let me remind you about the Hanson rehab glove by Syrebo. It’s one of the most practical tools I’ve come across for stroke survivors, helping you practice movement at home, support Neuroplasticity and regain independence.

Bill Gasiamis 1:22:31
It’s available in Australia from Banksiatech.com.au, and can be shipped internationally. I love being able to bring you solutions like this, because your recovery is about more than surviving, it’s about finding the right tools and supporting you to keep moving forward until next time. I’m Bill Gasiamis, and I look forward to seeing you on the next episode.

Intro 1:22:53
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.

Intro 1:23:11
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

Intro 1:23:34
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:23:49
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:24:13
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post 4 Months Unconscious, Life With a Brain Shunt: Mark Bragg appeared first on Recovery After Stroke.

Symptoms of Ischemic Stroke: What You Need to Know

When a stroke strikes, every second counts. An ischemic stroke,  the most common type, happens when a blood clot blocks blood flow to part of the brain. The faster you recognize the symptoms, the better the chances of limiting long-term damage and saving a life.

But stroke isn’t just a medical event. It’s also an emotional shockwave — for the survivor and for their family. Understanding the early symptoms of ischemic stroke doesn’t just prepare you to act quickly; it also helps you make sense of what comes after.

What Is an Ischemic Stroke?

An ischemic stroke occurs when a blood clot or plaque build-up blocks an artery leading to the brain. This blockage cuts off oxygen and nutrients, causing brain cells to die within minutes.

Ischemic strokes account for around 87% of all strokes worldwide. They can happen suddenly, often without warning, and the results can be life-altering.

Common Symptoms of Ischemic Stroke

The key symptoms to watch for can be remembered with the acronym FAST:

• Face – One side of the face droops when smiling.
• Arms – Sudden weakness or numbness in one arm (or leg, especially on one side).
• Speech – Slurred speech, difficulty finding words, or trouble understanding.
• Time – Call emergency services immediately. Every minute matters.Other possible symptoms include:

• Sudden vision loss or blurred vision in one or both eyes
• Severe headache with no known cause
• Dizziness, loss of balance, or difficulty walking
• Confusion or difficulty understanding simple instructions

If you notice these symptoms in yourself or someone else, don’t wait. Call an ambulance right away.

Why Quick Action Is Critical

During an ischemic stroke, around 1.9 million brain cells die every minute the brain is deprived of oxygen. Early treatment, such as clot-busting medication (tPA) or a clot retrieval procedure, can dramatically improve recovery outcomes — but only if given within a narrow time window.

Acting fast can mean the difference between walking again… or not. Between speaking again… or not. Between life and death.

“Every stroke survivor I’ve spoken with remembers the moment when everything changed. Recognizing the symptoms early could change the outcome entirely.” – Bill Gasiamis

Life Beyond the Symptoms

Knowing the symptoms of ischemic stroke is only the beginning. For many survivors, the real journey starts afterward — in rehabilitation, mindset shifts, and rediscovering identity.

Some may face:

• Physical challenges like weakness, numbness, or spasticity
• Communication difficulties (aphasia)
• Emotional changes such as anxiety, depression, or pseudobulbar affect
• Fatigue that lingers for months or years

While these are not “symptoms” in the medical sense, they are the lived reality of stroke recovery. Recognizing them helps survivors feel less alone — and helps caregivers understand what support looks like.

How to Support Recovery

If you’re a caregiver or family member, here are a few ways to help beyond the emergency:

1. Celebrate the small wins. Survivors often don’t notice their progress — pointing it out helps motivation.
2. Encourage consistency. Recovery takes time, repetition, and patience.
3. Learn together. Understanding stroke symptoms and after-effects can reduce frustration on both sides.
4. Seek community. Support groups and survivor stories remind us that growth is possible after trauma.

Taking the Next Step

If you’ve recently experienced a stroke, or you’re supporting someone who has, know this: you are not alone.

• Discover stories of growth in my book, The Unexpected Way That a Stroke Became the Best Thing That Happened
• Support the show on Patreon: patreon.com/recoveryafterstroke

Recovery is not about going back to who you were. It’s about discovering who you can become — even after the hardest challenges.

Final Thoughts

The symptoms of ischemic stroke are urgent signals. They tell us to act fast, to call for help, and to give the brain its best chance at healing. But beyond those first moments lies a longer journey — one of resilience, family, and finding hope again.

Life After Stroke: From Crisis to Recovery Beyond the Symptoms of Ischemic Stroke

A stroke, a transplant, and a family’s resilience — Brian & Brittany share how recovery goes far beyond the symptoms.

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BanksiaTech

Highlights:

00:00 Introduction and Background
07:24 Bryan’s Medical Conditions and Recovery
14:27 Life Before the Stroke
21:06 Impact of the Stroke and Initial Challenges
28:35 Support Systems and Recovery Efforts
35:38 The Role of Neurotherapy and Emotional Support
43:00 Adjusting to New Normal and Personal Growth
49:44 The Impact of the Transplant and Ongoing Challenges
56:06 Reflections on the Journey and Future Goals
1:03:37 Recovery and Motivation After Stroke
1:11:08 Perspective on Life Post-Stroke
1:18:31 Closing Remarks and Acknowledgements

Transcript:

Bryan & Brittany: Introduction and Background

Bill Gasiamis 0:00
Before we dive in a half dollar. Thank you to everyone who supports this podcast, including those on Patreon. Your contribution helps make these stories free and accessible to stroke survivors and caregivers around the world, and a big thank you as well to Banksiatech distributors of the Hanson rehab glove by Syrebo. It’s a smart rehab tool that helps stroke survivors practice hand movement at home, whether you’re at the very start of your recovery or many years into it, this glove is designed to help retrain both brain and hand.

Bill Gasiamis 0:37
You’ll hear more about it later in this episode. Now imagine facing an ischemic stroke while already living with type one diabetes and end stage kidney failure. For Bryan Caldwell, that was the reality, and for his wife, Brittany, it meant carrying her family through one of the toughest chapters of their lives. This is a conversation about survival, resilience and the unexpected ways that life can be rebuilt. Brittany Logan and Bryan Caldwell, welcome back to the podcast.

Bryan Caldwell 1:09
Hello. How are you again?

Bill Gasiamis 1:12
Man, I’m fantastic. It’s so great to have you guys here. Last time we chatted, it was episode 189 we are fast approaching episode 370 it was time ago, but it feels like yesterday, because I remember your story, Bryan vividly, and then I remember what Brittany went through.

Bryan Caldwell 1:37
In that, it was a lot for sure. So, yeah, it was a tough time. We’re all still recovering from our different deficits. But, you know, things are a lot better these days.

Bill Gasiamis 1:49
Yeah, different ordeal. How long ago was that?

Bryan Caldwell 1:51
Now, looking at about a little over four years.

Bill Gasiamis 1:57
Okay, so quite some time. So Logan was seven. He was six at the time. Yeah, he was six, Logan, do you remember any of the dramas that happened at your house at that time when Bryan was unwell?

Brittany 2:16
No, not really. We just had to. We had to go to his parents house and live there while he was in the hospital.

Bill Gasiamis 2:25
What’s it like learning about the fact that someone that you love, your family member is unwell?

Brittany 2:37
It kind of scared me at first, and then, like, she, like, kind of explained it in, like, a kid way, so I, like, kind of knew what was happening.

Bill Gasiamis 2:51
Still a little hard to understand, right?

Brittany 2:55
Yeah.

Bill Gasiamis 2:57
What was the hardest part for you? What was the scariest part changing houses, or the fact that Bryan wasn’t with you guys. What was the hardest part?

Brittany 3:06
Probably that and he was in the hospital, and then I couldn’t go in and see him in that one when she could go in.

Bill Gasiamis 3:14
Why couldn’t you go?

Brittany 3:16
I don’t know. They never told me it was covid, and so they wouldn’t allow kids in the hospital. And so he wouldn’t he, he we tried to kind of sneak him in one time, but we were like, No, we’re having to do that. And so he didn’t see him for about three months.

Bill Gasiamis 3:33
Yeah, okay, that’s pretty hard, and it would have been hard for Bryan and everybody anyway. I mean, it’s hard already, and then you can’t see your loved ones, and covid hospitalizations and stroke survivors not did it harder than anybody, even though there’s no such thing as you know my strokes harder than yours or whatever, like, even though everyone’s stroke is, in their own way, difficult and challenging.

Bill Gasiamis 4:01
Dealing with it during covid was even harder, made it even more complicated and emotional and traumatic. But I remember the story because I think when Bryan had the stroke, you discovered that you’ve got a whole bunch of other medical conditions as well. Can you remind me about the medical conditions that you discovered at the time of the stroke?

Bryan Caldwell 4:27
Well, I had already lost vision from diabetes in my right eye, so that was a pre existing condition. Then I had also learned that I was in stage five kidney failure with 3% function left. And so it was a little bit of a fate for the most part. And then after some time had passed, they decided, you know, you’re a pretty great candidate to get a kidney, pancreas transplant. So a year and a half, two years went by, and I finally received the transplant. And that was, you know, obviously, after dialysis for a year and a half, and I finally got the transplant.

Bryan Caldwell 5:06
And since then, you know, it’s been full steam ahead. I’ve been being very as I mean, as much as active as I can be, you know, with my deficits and whatnot, but working out, getting my fitness back up, getting, you know, my endurance back up and, you know, right? You know, stroke takes a lot out of you when you’re trying to move around and be active or whatnot, but this was a whole another motivation for me, just to push harder and push forward.

Bryan Caldwell 5:33
Yeah, you know, it’s supposed to take a lot out of you and you’re supposed to be tired, but I put so much effort into working out and eating healthy and drinking lots of water, and that’s pretty much all I drink these days. But you know, other than that, like my fitness and my fatigue, my fatigue is almost non-existent.

Bill Gasiamis 5:53
So we’ll talk about that. Yeah, let’s see if we can get to the bottom of why that might be the case. But before we do that, so what was like for the life, like for the family, before all of the drama? Brittany, it was a different time, right? So you guys were just going through usual run of the mill, day to day stuff, maybe a couple of little conditions that Bryan had, medical conditions that Bryan was dealing with, the diabetes and all that kind of stuff. But generally speaking, what was life like before all of this?

Brittany 6:29
I mean, life was definitely different. Logan being six, we lived in Utah, and so there was trails everywhere. So we went biking all the time. There was a pond he would go fishing at. Bryan had just finished his off road truck, and so he was going to take that to the dunes and jump it, or whatever you want to call it, but never really had the chance to do that. Logan was playing ice hockey, so Bryan was his coach in ice hockey also, and so it was definitely a bit of a change.

Bill Gasiamis 7:07
Did you looking back now that some time has passed? Did you were there any warning signs that you might have missed just because you were unaware and you’d never been through these types of things before.

Bryan’s Medical Conditions and Recovery

Brittany 7:24
For the most part, he had no symptoms, like they have talked about. The doctors have talked about how kidney failure is like the silent killer, because you really don’t have any symptoms. I remember there was one night, and I don’t know if it was few weeks or few months before his stroke, but he was out in like our loft area, and he had a really bad calf cramp. And I was like, maybe she go to the doctors? And he’s like, no, what are the doctors gonna do for a cramp? But one of the signs of kidney failure is you get cramps in your legs. I think that would probably be the only sign.

Bill Gasiamis 8:00
But who’s going to know that? I mean, everyone gets, yeah, cramps. Every so often. I know I get cramps. I’ve never considered once that it might be my kidney not working.

Bryan Caldwell 8:10
Yeah, so that’s definitely a focus of staying hydrated these days.

Bill Gasiamis 8:14
Yeah, you know your type two diabetes. Logan, did you have something to say there were you going to say something? Oh, oh, sorry, mate, I thought you were gonna say something. That’s okay. I’ll keep going, Bryan, did you look after yourself even though you were diagnosed with type two diabetes? Or were you a little bit slack on the taking care of yourself?

Bryan Caldwell 8:37
I was actually type one, and I was definitely a little bit on taking care of myself. I think my early years, I didn’t really care a whole lot, kind of, you know, my my probability of living a long life is a lot lower than most people’s are kind of looking at the way, like, Hey, I better have fun now. So I had a lot of fun, no regrets, but definitely ate what I wanted to eat. Didn’t stay as active as I probably should have had. I had a really good time. But, you know, over the years, I’ve caught up, and the damage had already been done. So, you know, these days it’s a lot put life into perspective.

Bill Gasiamis 9:17
Yeah, type one diabetes, how do you have to look after yourself differently from somebody with type two diabetes? Now, I believe that type one is something developed early on in life. It’s usually called in Australia, juvenile diabetes. Is that right?

Bryan Caldwell 9:34
Correct. I was diagnosed when I was six years old, and, you know, had, you know, I was supposed to watch my intake of sugar and my exercise and making sure I’m drinking lots of water and carbohydrates and nutritional facts and and I paid attention to it a little bit at first, and then over the years, kind of faded away and didn’t focus so much on the things I should have been focusing on. So, you know, long-term damage. That happened then.

Bill Gasiamis 10:01
So type two diabetes is the one where there’s too much sugar the body can’t deal with the it’s having struggle with the insulin production. Type one diabetes is what exactly we’ll be back with more of Bryan and Brittany’s story in just a moment. First, I want to say thanks again to Banksiatech for supporting this show. They bring stroke survivors the Hansen rehab glove by Syrebo with six therapy modes, including stretching, grasping, releasing, and even a patented mirror function that helps retrain your brain alongside your hand.

Bill Gasiamis 10:38
It’s safe to use at home and available internationally. You’ll find links in the YouTube description and at recoveryafterstroke.com and while we’re on the subject of recovery, I want to remind you about my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. Inside you’ll find real stories from survivors who found a way forward, not just to recover, but to grow. You can check it out at recoveryafterstroke.com/book. All right, let’s get back to Bryan and Brittany as they share how resilience, persistence and family, love kept them moving forward.

Bryan Caldwell 11:14
Basically almost zero production at all. So you’re, I mean, there’s sometimes in type two, where you might need to give yourself injections of insulin, but more than likely, it can be controlled with medication or exercise. For type one, usually it has to be highly, you know, adjusted with insulin and whatnot. So you’re taking a set dose every single day.

Bill Gasiamis 11:39
And is that the set dose that you were missing out on?

Bryan Caldwell 11:43
No, I was pretty up on top of it. But as far as, like, eating, overeating, eating sweets, yeah, drinking soda pops, you know, stuff like that, going out for dessert, doing things I probably shouldn’t be doing. So, yeah, definitely not, straight and narrow.

Bill Gasiamis 12:02
yeah, and type one diabetes. What does it cause if it’s not looked after? Now, there was blindness in one of the eyes. What other cause?

Bryan Caldwell 12:15
So that caused neuropathy in my eyes. I experienced neuropathy in my feet currently, and it doesn’t, although I received the pancreas kidney transplant, didn’t reverse it, I still feel it, you know, I, I mean, not necessarily feel it, because I feel a lot less in my my feet and toes. So if I, if I happen to cut it, or, you know, it’s a higher chance of infection, or I can’t really, you know, I don’t have a whole lot of temperature gauge, so I need to be careful about burning my feet and just if anything gets infected. I gotta be super careful and make sure it’s taken care of, or it could possibly be amputated.

Bill Gasiamis 12:56
And it’s the pancreas that is not working effectively in type one diabetes. Is that right?

Bryan Caldwell 13:02
Correct. And over time, if the sugar isn’t regulated, that’s why you have to test yourself so often. That’s what can cause the kidney damage.

Bill Gasiamis 13:13
So, my gosh, as a kid, as a six year old, get diagnosed with that stuff. I mean, it’s going to be hard to track. And then I imagine, at some point you just want to be quote, unquote normal. And then you do the dumb stuff that everyone does when they’re coming through the years. And then teenager, I imagine, and then drinking age, you hit that hard, I imagine, yep, that makes complete sense. So it’s really hard to opt out of that, though, to be that age and to opt out of it and not to do that, because everyone you know is doing all of that.

Bryan Caldwell 13:52
Yeah, it’s kind of hard to kick yourself in the butt a little bit and do what you’re supposed to do rather than going with the flow and having a good time, you know, like, I try to look at things in a positive light and not dwell on the past and what I have done, which what I could have done, you know, I look forward to the future all the time, no matter what.

Bill Gasiamis 14:12
Yeah. Can you, Brittany, can you describe the time when everything changed, that moment, like with a stroke, and what happened? Are you still comfortable talking about it?

Bryan & Brittany: Life Before the Stroke

Brittany 14:27
Yeah, I mean, I think when he had a stroke, I would just, I was just in Go, go, go mode, and it didn’t feel real, like I would wake up and be like, it was just a dream, and then I would wake up and be at my mother-in-law’s house. I’m like, wait, this wasn’t a dream that I thought. And so it he had really bad pseudo-bulbar when he was in the hospital, and so his pseudo-bulbar in the hospital, at least, was he would cry all the time. Yeah, now it’s, he laughs all the time, which, it’s a good and a bad thing, but, you know, so he would be super upset all day.

Brittany 15:10
And then Logan would be super upset not being able to see him. So I would kind of have to, like, put my emotions aside. So it probably wasn’t for maybe six months to a year after, where that’s when I really started to struggle with, like, reality of the situation, because it was constant on the go, doctor’s appointments, therapy appointments, whatever he needed to do. And then when it kind of slowed down, when he was just doing dialysis every day, then it was like, Okay, well, like, this is actually real life.

Brittany 15:41
And that was more of the time that he was coming Bryan was coming around, and, like, more of his mental capacity, like his cognitive ability, was getting better at that time. So he was like, I’m just trying to be positive all the time, and you’re just crying every day. And I’m like, it’s hard.

Bryan Caldwell 15:57
It was definitely difficult for me to understand.

Bill Gasiamis 16:00
Yeah. And at the same time, you realize you had a stroke, but then you’re being also you were told that he had kidney failure.

Brittany 16:10
The doctors, I remember, when they first, the first doctor of the initial hospital, he almost got mad at me because he said, How long has he been in kidney failure? And I was like, what he said, we can’t even push contrast through to do a scan on his brain. And I said, Okay, well, I was completely unaware of that, and I don’t know that this is the best way to approach the wife of someone who just had a stroke, like, that’s insane to me. So, yeah, we had no idea. But, you know, when he got transferred to the other hospital, they all they immediately intubated him.

Brittany 16:39
They said he couldn’t protect his airways anymore. They took him up to, you know, the neuro ICU, and at that point it was covid. People were getting intubated. They weren’t coming out of intubation. And so I was freaking out that he may not come out of intubation. They didn’t know what was going to happen. And plus, you were him out of stay overnight, they ex bat even an ICU patient.

Brittany 17:02
So visiting hours were nine to nine, so I would have no clue what would happen after hours, and till I would get there, and then I would find out, okay, this, you know, there was nights that I wasn’t there, and he would pull out a speeding tube, and then they would have to replace it the next day when I was there. But I these are things that I wouldn’t know about.

Bill Gasiamis 17:22
Did you go into any moments of denial or this can’t be happening? This isn’t real. If I just pretend it’s not happening, it’s gonna go away.

Brittany 17:33
Yeah, I think so. But I was still there every day, and, you know, still tried to do the best that I could to advocate for him, because I felt like, you know, they had different doctors every day, and shift changes happened, and they didn’t fully read the charts, or didn’t know the full extent of what his health was. And so I would have to tell them, nope, that’s not what’s going on, nope. So I’d always have to be there whenever they were changing shifts just to make sure they didn’t miss anything.

Bill Gasiamis 18:03
So you I recall my wife kind of describing a similar situation. See what happened to my wife? Was it she her mum passed away, literally, I mean two, three weeks before my brain surgery, so we had to bury her. Then I had to go into brain surgery, and then I was in rehab because I couldn’t walk, and I had to learn how to walk again. So my wife didn’t have opportunity to bury her mum, mourn, do any of that stuff. Her dad was in a wheelchair, so he needed immediately 24 kind of on shift work, kind of rotation care from the three sisters.

Bill Gasiamis 18:52
And when I touch base with my wife about that now, because more than you know, 12 years has passed, and we can reflect on it. She said that she had to put everything on hold and then attend to herself kind of later. Did that time come for you? Did you find this yourself in a moment where you go, Oh, and it’s going to be about me for a little bit?

Brittany 19:18
I think it’s been about me for a little while now, when Bryan, like, I don’t want to say fully recovered, but when he recovered to the best of his ability, as of now, like, you know, he takes care of everything. He’ll clean the house, he’ll do the laundry. My gas is always full. I drive to work and I’m like, Oh, that’s interesting.

Brittany 19:38
I was on E yesterday, and all of a sudden I’m full, so now, yes, it’s to the point where I can, you know, worry about myself, if there was any, if there was anything to actually worry about. But I think he does such a good job of making sure I don’t worry, although I’m a worry wor about everything.

Bill Gasiamis 19:59
Yeah, less about worry, more about just attending to your needs, you know, like alone time, you know, time to do your thing, time to go where you need to go. More more about that than anything else. Yeah, and then how much of your time is is spent doing caring type of things for Bryan does. What type of support does he need from you?

Brittany 20:25
I mean, physically Now, none. He can do everything himself. I think the support that he needs, that I’m not always the best at, is probably more of like the emotional support or just, you know, giving him the daily compliments that he looks for. And I just, I struggle with that, but I think, you know, everything else, he worked really hard to gain a lot of his ability back so he didn’t have to rely on me. And I still worked full time regardless of him having a stroke. Like, I worked every day in the hospital. I worked when I came home.

Impact of the Stroke and Initial Challenges for Bryan & Brittany

Brittany 21:06
Luckily, the company that I worked for was out of state, so it was remote, so I did work full time, also while taking care of a child. And so now, like, I can just work and not have to worry about, really anything, versus Okay, I have to work. I have to do this, I have to do that. And when, you know, when he first came home, he was very it’s it’s noon, he would text me, it’s 12 o’clock, I need to eat lunch. It’s five o’clock, I need to eat lunch. It’s six o’clock. I have to set up for dialysis. And that would just drive me nuts, but he didn’t.

Brittany 21:42
He physically couldn’t do some of the things, whether it was hooking up his dialysis or cooking food. And then I think he just got so tired of it’s 1205 and I still wasn’t downstairs. So he’s like, Okay, I’m gonna force myself to do this and learn. And you know, he he made some mistakes along the way. But I think he just, he didn’t want to have to rely on me, is what it was, and I think that helped in his recovery.

Bill Gasiamis 22:09
My gosh, my wife looked after the kids. They were teenagers. My wife went to work. My wife looked after her dad. My wife did all those things that you just described as well. It’s just when I listen back at it, I cannot imagine myself being that busy for an extended period of time. Bryan, do you agree you’re nodding there?

Bryan Caldwell 22:33
Yep, definitely. I mean, these days it’s a little different. I’m the one that’s busy all the time, but back then, she was taking on so much, and I can’t even imagine the overwhelming sin like feeling for her. So I mean, it’s hard to make me overwhelmed as a man, but as a woman, I mean, she’s taking on work, taking on her husband that’s emotional, taking on her son that’s emotional, going to school, you know, taking care of bills and everything, just, I can’t fathom.

Bill Gasiamis 23:05
Yeah, it is. It’s kind of like just instinctive. Is it an instinctive? It’s just like, you don’t think about it and well, unless it’s being annoying a particular moment, but things gotta get done. You just get them done, right?

Brittany 23:22
Yeah? Right? Yeah. I mean, I didn’t really think in that moment now, like, I’m like, Oh, I have to get up and I have to do this, and I have to do that, and I think more about it, and then I don’t want to do it. But back then, it was like, Okay, we have an appointment at eight. We have therapy at night. We have to be here at 10. I have to go pick up, you know, Logan by 2pm at school, and so I was more structured in that sense, where I just got up and did it.

Bill Gasiamis 23:48
Yeah. It’s really fascinating. So Bryan, did you find yourself being afraid to take the next step in your recovery early on, and as a result, you were relying on Brittany because she was there. What was that like to finally go? I’ve had enough of waiting for her. I’m going to do it on my own. What did you discover about yourself at that time?

Bryan Caldwell 24:15
Well, we had gone into some arguments, and you know, while I’m sitting there doing nothing all day long, basically just watching TV. She’s taking care of everything for me. And, you know, I’m very, was on time for everything. Like, I’m very, you know, root, yeah, exactly routine. Like, I need that routine and to the to the second, like, I need to be on point. But she’s like, kind of like floating through life, do her thing whenever she needs to, whatever she wants to. And I’m like, No, I need you now. And you know how stroke makes you very impulsive?

Bryan Caldwell 24:55
And I was being impulsive and being rude, and I was and as an. Sitting there all day long watching TV, thinking to myself, you know, I hate the person I’m becoming. I don’t want to be this person. I want, you know, my motivation in the hospital to get better and get out of the hospital was Logan and Brittany and to be there as a dad and push forward. And here I am not doing exactly what motivated me in the first place. So I look back on that and a lot of thoughts went through my head, and, you know, typically, I don’t think those thoughts would be able to process as easy.

Bryan Caldwell 25:32
I had done neurotherapy early on, and that helped a lot. So that helped me, you know, develop my cognition a lot better and able to use my brain a lot more.

Bill Gasiamis 25:49
So what kind of neurotherapy?

Bryan Caldwell 25:52
So it was a new process where they hook different sensors on your scalp, onto the parts of the brain where they they pre previously do a scan on your brain at which parts of your brain aren’t working as well, or what it should be. So they attach these sensors on that brain part that’s not working. And you sit there, you pick whatever TV show you want to watch that keeps your interest, or if you want to focus on it, and you know, I picked something that’s really maybe true crime or something like that, right? I want to focus. I want to pay attention.

Bryan Caldwell 26:29
If you don’t pay attention, the TV goes dim. So if you pay attention, the TV stays lit. So if you’re not, you know, nodding off and paying attention. You can watch your whole episode, but every little tiny bit that’s where it notices you, nodding off or looking away or whatever it is, it’ll go down no matter what. So I did this for four months, three times a week. I want to say it was like 45 minutes to an hour a day.

Bill Gasiamis 27:02
Wow. So it’s kind of like training you to move beyond the threshold of fatigue that I’m going to nod off Have a rest. It’s kind of motivating you to to to do the reps, you know, like the next rep, and then just to sort of try and get yourself to the next level.

Bryan Caldwell 27:24
Exactly. And what turned us on to it in the first place was that it could in certain situations where they have provided proof has helped different stroke patients with any kind of function or movement. And that was kind of the excitement behind it. It didn’t really help me gain a whole lot of function back, but it just helped my brain a lot more to maybe learn a little bit easier, maybe a little bit better.

Bryan Caldwell 27:49
We heard that it helps with autism and different seizures and whatnot like that, so I just gave it a try. It wasn’t covered by insurance or insight, so it did come out of pocket, but it was definitely beneficial took away. I mean, I was very anxiety filled for the first few months. I mean, driving was like the worst. I was always in my head. I can feel like I’m not going to fall out of a car, but there’s always a feeling that you’re going to fall out of a car. I don’t know why. It just affected that part of your brain. So after the therapy, I mean, anxiety went away 90%

Bill Gasiamis 28:29
Wow, that’s so cool. So what extent are your deficits?

Support Systems and Recovery Efforts

Bryan Caldwell 28:35
So originally, it was the whole left side, but as a lot of work and a lot of rehab. This is like personal rehab, because I graduated medical rehab and did that, and they said, you know, you’re good to go. There’s not a whole lot more we can do. And I kind of took that and said, You know, I’m going to keep on doing my own thing. I’m going to get stronger. I’m going to be more functional. I want Brittany to feel supported. I want her to be able to go do things with me. I want to be able to go things, go do things with her. We can go out to to dinner, to lunch, whatever.

Bryan Caldwell 29:08
And I’m not such a big, you know, headache to her. It’s like, you know, if you’re taking someone that’s running into everything all over the place, you know, it’s, it gets kind of burnt out on taking your handicap husband everywhere. It’s kind of making a scene. So I wanted to be as normal as possible. I’m still not normal by any means, still impulsive, still have, you know, hardly any dexterity in my hand. I’m able to move my arm quite a bit more. I can walk. I just don’t walk normal. I don’t have any devices that help me walk or do anything i i manage everything on my own for the most part.

Bill Gasiamis 29:49
Brittany and Logan, obviously the big motivation. Will call them your team members, your supporters. Were there some other people that came up. That kind of mentored you, helped you. How did this?

Bryan Caldwell 30:06
I mean, I had some friends. I had a lot of a friend group, like, I would say, group, a lot of friends that were supporting, a few friends that were a lot closer than other friends. But for as as the main support, Brittany and Logan 100%

Bill Gasiamis 30:22
Yeah. And it was kind of like a a campaign that you guys all had at home.

Bryan Caldwell 30:29
Exactly. I mean, I would, you know, she explained to Logan that, like, hey, you know, Dad’s gonna be like this, and he you gotta be extra nice, because he’s, you know, you do these small things, he’s going to get really ticked off and probably yell at you, and he’s he doesn’t mean it the way it comes off, so he understands that aspect. So I mean, in all honesty, it’s kind of helped him mold who he is today, because he knows exactly what to do and what not to he has a really strong conscience, as far as you know, the right things to do.

Bill Gasiamis 31:02
Little kids just are so switched can be, so switched on if they want to be. And when they’re around adversity, they step up. You always see little kids step up and play a role that they’re not what they’re not meant to play. Sometimes even, you know, they just take on responsibility and they become stoic, and they become unbelievably good at sort of working out the emotional stuff that we might not be really good at working out. You know, they’re kind of able to tune in a little better than what we can.

Bryan Caldwell 31:39
I mean, Logan could have his own episode if he wanted to. He’s got such a deep, interesting story about the whole experience that I think people could listen to him for hours about his different experiences. Yeah, wow.

Bill Gasiamis 31:54
What motivated you guys to come on the first time? I can’t remember exactly how we connected and why you guys joined the podcast the first time. Brittany, do you recall?

Brittany 32:06
I don’t remember. I don’t know if maybe Bryan had reached out, I think, and I honestly don’t even remember what year we had spoken with you, if it was at the very beginning of the stroke, or maybe a year later, but I know it was pre transplant, so I think it’s really good to have his story, you know, from when it first happened and then to where he is today, because so much has changed.

Bryan Caldwell 32:34
Yeah, I actually do remember.

Brittany 32:38
I can’t remember.

Bill Gasiamis 32:40
So this word, I didn’t mean to ignore you. Sorry.

Bryan Caldwell 32:45
Hey, I’m still here. But anyway, you know, it’s perfectly fine. This was post rehab, so all the medical prescribed, you know, occupational and physical therapy had I had graduated from and while I was at the gym, on the treadmill or whatever, I’d listen to podcasts and anything that was motivational. And so I had researched, you know, recovery after stroke, and it had popped up, and I had gone through 100 different podcasts and listened to, you know, 100 episodes before I decided, you know, I should reach out to this guy, Bill.

Bryan Caldwell 33:19
And see, you know, if I could share my story, because I think in that time, I wanted to help others. I mean, I had gone through a period of time where I was lot more unfunctional than I am now, where I had gotten all my friends and rallied everyone up to donate money, and I had just joined all these different Facebook groups and would witness everyone’s story, whether they’re struggling with, you know, copays or just gasoline getting to different or maybe Ubers getting to their appointments.

Bryan Caldwell 33:54
And they were, you know, not so successful in doing that. And I said, Hey, like, I’d see a particular person and that’s struggling, and I’d reach out and say, Hey, like, what’s the issue? You know, I can’t pay my $50 in copay or my $20 in gas to get there. Well, hey, no strings attached. Here’s $500 and I had rallied all this money together to where I had a good amount of money. I’m just floating people. I didn’t care to keep any of the money, just was throwing it away, basically, just so I can help people, so that was just as something different that I could contribute was to reach out to you.

Bill Gasiamis 34:30
Yeah, look your contribution. People don’t realize what a difference it does make for stroke survivors. I receive messages every single day by people who are glad they found the podcast now people are finding it in hospital, which is something I just love to hear, because that means that we’re decreasing the time that it takes for them to go from stroke. Oh my God. Who am I? What am. What happened to me, all that kind of stuff, to overcoming that, recovering from it, seeing that other people have done it, you know, getting a tip or two from the person I’m interviewing.

Bill Gasiamis 35:12
And it’s just such an amazing thing. And it’s happening all the time. I receive messages all the time. And of course, as a result of the podcast, other stroke survivors reach out to each other through social media, or they contact me for an email address or whatever. And that’s brilliant. That is so so good, because I can bring people together who have had the same experience but are in completely different parts of the world.

The Role of Neurotherapy and Emotional Support

Bill Gasiamis 35:38
And because they are so far away, they never would have been able to connect previously and share their similar experiences of their particular stroke or their particular deficit or their particular problem, even so much so to the point this is the one that freaked me out the most. I interviewed an amazing lady whose name I can’t remember right now who had decided to have her foot amputated because of the pain after her stroke, the neurological pain in her foot was unbearable.

Bill Gasiamis 36:13
She put up with it for so many years, and she decided to have a foot amputated. And I thought that was mental, amazing, mental, whatever she thought it was the best thing that ever happened to her, and she was just so overwhelmed that somebody was willing to help her in that way and do that for her. And then, of course, you wouldn’t. I mean, I never expected it, but somebody reached out to me to connect with her, to ask her about her procedure and who was that did it for her, etc.

Bill Gasiamis 36:43
So even in that extreme situation, to be able to connect two people is just mind blowing. Lee, amazing. It’s just fantastic. So that’s just to sort of paint a picture of how much you reaching out to be on the podcast to say maybe it’ll help somebody actually does. And then this one other story, where I’ve interviewed heaps of people that have had carotid artery dissections or a vertebral artery dissections, and in those conversations, I’ve spoken about the deficits. I’ve spoken about what it felt like, what the headache was like, what the stiffness in the neck was like.

Bill Gasiamis 37:24
And this lady who was not a stroke survivor, types in her problems, her pain or whatever, her neck issue. And one of my episodes came up, and she listened to the episode and realized that she had exactly the same problem that the person I was interviewing had, and she asked her husband to take her to the hospital and got the doctors to scan her neck and discover the dissection before a clot occurred.

Brittany 37:58
Wow, that’s crazy.

Bill Gasiamis 38:01
I’ve got no idea what you’ve typed. I mean, how can you possibly type the right thing to get the episode up, to find that stuff and answer your burning question, and then go to the hospital get it exactly, you know, the right outcome? I mean, that’s exactly what we do this for. This is, this is why. So it does help heaps.

Bryan Caldwell 38:22
Right to touch on your lady that you interviewed with an amputated foot, I had pain in my left hand, in my affected hand, that was a 20 out of 10 in pain for what, three weeks. Yeah. I mean, I said, Please, let’s just chop this off. It hurts so bad, and we were doing a bunch of different things to hopefully manage the pain. And what helped for me the most was the littlest things that I could do, if I was just consistent with those little things, you know, I just get a little bit more, a tiny bit more.

Bryan Caldwell 39:03
And within two weeks of just being consistent every single day, the pain disappeared, and I had no clue. No one gave me any idea that that would happen. Same with, you know, my rehab now just working out every day that I started with being able to, I mean, it’s basically getting up sitting out, getting up sitting down, start doing that. That’s very difficult at first. Now, then I went to squatting one pound.

Bryan Caldwell 39:33
And that was a an achievement for me at the time. You know, just a couple weeks ago, I squatted 160 pounds. Wow, which was a big achievement for me personally, just to look back at where I started, where I am now, it just, you know, I just, that’s why it makes me want to keep going. I just want to do a little bit more.

Bill Gasiamis 39:56
It’s consistency definitely is, and that’s the thing. Be that’s really hard, a hard picture to paint to stroke survivors who are early on in their journey. You know where you were during covid, at the first few weeks out of hospital and at home and driving Brittany mental that time. It’s a real hard time to say to somebody, this is what’s possible. I know because I’ve seen I’ve seen it in 360 stroke survivors who I’ve interviewed. So like, you just have to do the work. You can’t just accept it, to expect it to turn up on your door and be ready for you to get back to normal.

Bill Gasiamis 40:39
You have to work hard, harder than you’ve ever had to work, maybe, but you have to be consistent. You have to have habits that are good, habits that serve you, not habits that are bad habits that don’t serve you. And then things improve, and you can have a What’s that like? More quality of life, a greater quality of life. And I know everyone has a different version of stroke, and some people start off with a really way worse version of it than others. I know that doesn’t mean anything.

Bill Gasiamis 41:09
Everyone can improve their situation by making some positive changes to their lifestyle, nutrition, mindset, physical, how physical they are, etc. You’re a classic case of it, because not only did you have a stroke, you have a new pancreas, you have new kidneys. I mean, you’re a proper miracle person.

Bryan Caldwell 41:35
Yeah, it’s not necessarily even working hard. It’s just coming, showing up every day and just putting in the little bit of work, the consistent work. I mean, you can work hard, and I after over time, I wanted to work harder. I wanted to make those big jumps in a little bit, you know, maybe a big chunk of function, who knows, but it’s a you don’t even realize it’s happening.

Bryan Caldwell 41:59
But the little bit you’re doing, maybe a month or two goes by and you realize I wasn’t able to do that a month ago. Wow, this is working. But, I mean, you look at a year in, in, you know, the past, and you’re like, wow, it’s gotten a lot better than it used to be, no matter what. And you know, there’s lots of regression from time to time, and that’s just natural. But who cares? Keep going.

Bill Gasiamis 42:26
Yeah, Brittany, is this the same guy you met was just a completely different version of him, like, I know there’s things that are familiar, you’ll recognize about him, that you fell in love with and all that kind of stuff. But are there two different versions of him, or is it kind of all molded into one, and is this is an enhanced version? Or even though he has deficits.

Bryan Caldwell 42:52
I’m better looking now.

Bill Gasiamis 42:55
No doubt, man, a good bottle of wine.

Bryan & Brittany Adjusting to New Normal and Personal Growth

Brittany 43:00
After the stroke, I yeah, I had a hard time, because I’m like, where did that person go? You know that I fell in love with and what he did, a lot of off the wall stuff in the hospital, and he would always joke around, and it was always a joke that I said, if you ever lost your sense of humor, I would leave you. And so he always tries to be funny, sometimes too funny and not the right situations. It probably took, I want to say, a year and a half to two years it took him to come back to the person that he was before.

Brittany 43:42
But different at the same time, where I would say more so now, like years later, now he he recognizes, you know, I shouldn’t have done that before my stroke. Like, I’m going to do better now, and I’m going to change this. It’s more of, I think, the Near Death Experiences that he probably had where he looks at it in just a completely different way of life. So he tries to live the most positive way.

Brittany 44:11
We have neighbors, and the one of the very first things that they always say is he’s one. He’s just always out doing stuff and on the go all the time, and he’s just such a positive person for everything that he’s went through.

Bryan Caldwell 44:27
He actually, he actually mentioned that I’m the most energetic person that he’s ever met. He’s like, I can’t do this. I need a nap during the day. I need two naps during the day. And I just, in my mind, I have so much to do. I have so much to take care of. I’m not working, so that means I need to switch roles and take care of the things that I can take care of.

Bill Gasiamis 44:51
Yeah, I love that you’re not working in a traditional way, but you’re doing stuff that needs to be done. It’s no different to. A mum, right? Who’s at home looking after the kids, going, Oh, I don’t work. And everyone going, Oh, she doesn’t work. She mustn’t do anything. But no, there’s a ton of stuff that gets done, but it’s just hard to for people to wrap their head around what work looks like. And that’s an identity issue that people have, if I’m not going to an office or to work, or to getting in a car, having to be somewhere by nine and then home by, you know, 5:36, o’clock.

Bill Gasiamis 45:28
If I’m not doing that, that means I’m not being productive, constructive, or something like that. But it you can, you can be productive and constructive in many other ways. You can volunteer, if you can for half an hour, or even an hour a day, you can or even an hour a week. It doesn’t even have to be a day, but you can participate in different tasks to feel like you’re working and being productive and constructive. That’s what and that kind of helps change your identity to see opportunities of what work could look like.

Bill Gasiamis 46:09
It doesn’t have to be the traditional form where somebody else makes the rules about how you turn up or what you do or how many hours you have to work for. You could change that. There’s an opportunity there, but it takes a while for the adjustment to occur and and for people’s identities to expand beyond you know that question that we always answer when we meet people at a party, you know, what do you do? So and if you don’t do something that’s interesting to them, they move on to the next person.

Bill Gasiamis 46:39
The conversation ends, and then they just go, that’s really interesting. So what’s it like for you, Brittany, to observe the whole miracle of medicine from an outsider? Firstly, diagnose, fix up, work out a stroke, then deal with pancreas, kidney failure and all that kind of stuff the donor as well. Can we talk about the donor in a little while? In a minute, what’s it like for you to observe all of the stuff that he’s been through as his wife?

Brittany 47:19
I definitely have said plenty of times, if I was in that situation, I could not have done it, just because there was so much going on it. And I’ve seen stories where someone has a stroke, and you know, they’re in the hospital for a few days, and then they go off to rehab, but he was in the hospital for two months straight because he had complication after complication after complication. And so it was that it was rehab, then it was the kidney pancreas transplant, and he was no longer a diabetic.

Brittany 47:54
And one of the things that I guess I never really considered or thought about was what he had to deal with as a type one diabetic, with all of his highs and lows of his sugars, and how that also affects him. And you know, he would go really high, and then he would give himself maybe too much insulin, and then he would wake up in the middle of the night, and then he would be low, and then he would drink juice or eat something to bring his sugar up. And then sometimes it was too much, so then he would be high again.

Brittany 48:23
And it was a never ending cycle of constantly worrying about sugar levels and how that affects him, whether or not he’s tired, he’s grumpy, you know, in whatever, in whatever way. And then, you know, after the transplant, that was just something that was a miracle that he got it done so quickly. And getting a kidney, new kidney, and a pancreas that, you know, creates insulin.

Bryan Caldwell 48:50
May have changed both of our lives.

Brittany 48:53
I never thought about being a donor like I was never a donor on my license. And after that experience, we watched a few movies about transplants, and then just the after of like, what kind of life that donor gave someone, and I’m like, You know what? Like, I want to be able to help someone, you know, if I’m no longer here, and just knowing that there was also children on the pancreas and kidney list, that was also like, man, if you know my son was on that list. I would want someone to help him.

Bill Gasiamis 49:24
Yeah. Are you waiting for that transplant, contemplating your days may be numbered?

Bryan Caldwell 49:36
No, I had heard, I mean, people can live on dialysis for years. It was, was it up to 10-15, years?

The Impact of the Transplant and Ongoing Challenges

Brittany 49:44
There was one guy that our nurse was telling us that he was still on dialysis after 20 years, and he didn’t want a transplant. I think it’s just more of how you take care of yourself during that process. And he was super. Strict, like, I was super strict on what I cooked, you know, and they had said, if you eat too much phosphorus, which was too much cheese and nuts, you can turn parts of your skin black, and parts of your skin can start falling off. And I don’t know if that’s just an over consumption, overeating and over, like, a 10 year period.

Brittany 50:18
But we were both like, yeah, no, we’re not doing that. So he cut out cheese, he cut out nuts, he did whatever he could to follow the diet as closely as possible. He was, he had lost, I don’t know, 50 pounds. And I mean, he looked very skinny because he didn’t have too much muscle, but he also, at the same time, looked very healthy.

Bill Gasiamis 50:43
And then you get the phone call, do you? How does that work? How does that go? What is it like? We have a liver and we’re sorry, we have a kidney set and pancreas for you. But how does it work?

Bryan Caldwell 50:55
Yeah, they kind of, they give you a whole hoop to jump through, as far as, like, what you need to do, what you need to be prepared for you gotta, you gotta do a pre op of everything, like a pre visit for this pre visit, for that, make sure you’re cleared, ready to go, because they give you, what, a couple hours. I mean, depending where you’re located, sometimes a lot of people have to, like, either drive really far or fly really far, and you have to be there within a small amount of time before that those organs go bad.

Bryan Caldwell 51:26
So luckily, the hospital I was being treated at was only 30 minutes away, or even 20 minutes away, so they gave us a call. We’re ready. I mean, they say, pack a bag. Pack this pack that we didn’t really have to do all that stuff. We were never burdened with, like, being make sure we’re ready, make sure we’re there on the minute. And, like, we only had minutes to spare. You know, we have 30 minutes, and I think we have like, three whole hours to, like, play with because we’re so close to the hospital, thank goodness.

Brittany 51:59
Yeah, I learned a lot about that process. Like, I called probably every week. Hey, what number is he on the list? Because the kidney pancreas list, compared to just the kidney list, is so much shorter. There might be two to 300 people on just the kidney list, but when you get dual organs, you’re on a much shorter list. And I guess you get, like, preferred, like, if you have multiple organs. And so I called, and I’m like, what number is he on? And he finally was, like, at number two when I had called one week. And so I’m like, Okay, it’s, it’s getting close, like, but they did one year.

Brittany 52:33
I think, the first year that he was on the list, they only did one kidney, pancreas transplant that entire year, and then the next year they had done, you know, six or seven, which was the year that he got called. And they called at eight o’clock at night, and they said, we have, or we have organs ready for you. You need to be here by 11. And I was like, Okay, we’ll be there. We get there. They put him through pre op. He was in the or by 4am and they told me it was going to be a four or five hour surgery. And so I went home, because they were like, go home, go sleep.

Brittany 53:09
So I’m like, okay, by the time I got home, I laid down for probably 20 minutes, and they said that he was out of surgery already. So it was a very quick surgery. But I drove back down there, and then they started freaking me out, because, apparently, because he had type one diabetes for 30 years, he had a lot of this. So they attached his kidney into his left leg artery.

Brittany 53:33
But having type one diabetes for so long, I guess it, it creates a lot of calcification in your arteries. So every time they tried to attach the kidney, it was like the vein was disintegrating. So they were having a hard time doing I’m like, what does that mean? They said, I don’t know. We, we, at first couldn’t find a pulse on his left leg. I’m like, so he gets a new kidney and loses a leg. Like, what is going on?

Bryan Caldwell 53:56
That was a big iffy of if they could, you know, it’s going to heal a little bit overnight to where it’s going to develop some blood. Develop some blood flow, and they can feel a pulse, and they’re like, Well, I can hear, while I was, you know, coming out of anesthesia, that, you know, we got to make sure we talk to his wife and let her know the complications. He could be losing a leg right now, and, you know, we’re barely feeling this pulse, and it needs to get better within 12 hours, or it’s not looking good. And I mean fate, it all worked out. And it just, you know, no complaints.

Bill Gasiamis 54:30
The things that have to line up, the amount of things that have to line up. But it starts with somebody needed to pass away.

Bryan Caldwell 54:37
Yeah. Look, I am very thankful for the cadaver, not the cadaver, the person that passed away, he was a very healthy person, so I got some great organs.

Bill Gasiamis 54:51
Did you get to find out who that person is?

Bryan Caldwell 54:55
I’m not supposed to, but my nurse has a. Big blabber mouth, and she gave me some information, but we still don’t know exactly. We just know the situation. So he was in a car accident. He was 29 years old.

Brittany 55:10
Maybe it was early 30. She says 31 male. That was about it.

Bryan Caldwell 55:17
And typically you get 30 to 40% kidney function with whoever is donating. And as mine was in, I mean, the first few weeks after the post op was like 75 or so. And then after that, a lot of recovery, I had jumped up to like 9090, 500% almost. So I still am floating around 90, 95% still, wow.

Bill Gasiamis 55:50
You mustn’t recognize yourself as well how you feel in your body, even though you have neuropathy and deficits, there’s other parts of you that have never worked so well. What? What is that contrast?

Bryan & Brittany Reflecting on the Journey and Future Goals

Bryan Caldwell 56:06
I mean, the only thing that I really noticed was, you know, with high blood sugar, your vision is off. It’s a little blurry sometimes. But after the the transplant, my vision cleared up for the most part. Like I felt like I was pretty close to 2020 vision. Wow. Although I had previously had, you know, it was like 10-20 in one eye. So I’m basically legally blind. But after the transplant, everything looked and, I mean, I just had so much more energy.

Bryan Caldwell 56:36
Not everything started working better, per se. But as far as, like, you know, I could eat different things now, and it took a long time for rehabilitation to, like, get everything to be working the way it’s supposed to be working. And then after that, like, I kind of just focus on doing the right things, and then as I did the right things, I just gained more and more energy.

Bill Gasiamis 57:00
And do you take anti rejection medication?

Bryan Caldwell 57:05
Yes, I there’s a few of them I take. And then as a whole, I probably take 20 different pills a day, maybe 25.

Bill Gasiamis 57:16
Yeah, spread throughout the day.

Bryan Caldwell 57:19
Along with my few stroke medications, and then all of the anti-rejection and sustaining medications.

Bill Gasiamis 57:28
Okay, so it’s still quite a regime of medications and things that you need to do to make sure things stay on point exactly.

Bryan Caldwell 57:39
It’s only day and night. There’s a few things here and there with typical transponders. Love UTI and you know, just little, little hiccups that you’re like. You better get that check out before it gets too serious. But other than that, you know, it’s life. Like said, the quality of life is much better. I’d rather take medicine and have to worry about my my organs all the time. So it’s life is so much more easier with this whole transplant.

Bill Gasiamis 58:10
Is the medication expensive to access?

Bryan Caldwell 58:14
I mean, if there’s no insurance involved, very much, I want to say it’s $10,000 a month, yeah, or more, luckily, we’re, we have great insurance, and I’m now under Medicare, being fully handicapped that, you know, I get that taken care of, and then I’m covered by her, her job also. So dual covered, you know, there’s small things we have to pay for here and there, but overall, it’s, it’s well covered, but in most situations, this isn’t what people experience.

Bill Gasiamis 58:45
Yeah, I remember guys an Instagram post where Bryan was talking about some modifications he was going to do to his car, and I think I encouraged it. Did they get done?

Brittany 58:59
Quite possibly. I mean, he’s tried. He’s told me, Hey, I think I want this. I’m like, No, we’re not doing that. He so when he first started driving in after his stroke, he was a little too worried about doing donuts in a field and ran into a pole. And he swears it wasn’t fast, but the second so that’s when his like brain switched from pseudobulbar crying to laughing all the time. So he pulls it up into the driveway, gets out, and just starts busting up laughing.

Brittany 59:34
And I’m like, What is going on? And what did you do? And I walk around the truck, and he had been in his bar, his fender was totally smashed. That was like a good $2,000 repair.

Brittany 59:45
So I’m like “No, it’s fine.”

Bill Gasiamis 59:51
Okay, so I see what you mean about like, it’s the suitable but maybe is taking away a little bit of. That caution as well. Perhaps it sounds like it’s taking away the the thinking part of the maybe I shouldn’t do this.

Bryan Caldwell 1:00:08
No, I think. It’s still there. It’s still impulsive. If I shouldn’t do it, I’m still going to do it.

Brittany 1:00:15
I think the pseudobulbar now is more of like, if he’s mad at me, or he thinks he’s mad at me. He can’t keep a straight face. And so I’ll be like, What are you laughing at? Or why are you doing that? And he’s like, stop. You know, I can’t help it. Just start laughing. And so then it kind of like eases the mood of like his frustration. And then he’s like, I’m laughing right now, but I’m really not inside. And I’m like, What are you?

Bill Gasiamis 1:00:39
Well, so the external, again, the external what’s what’s visible isn’t matching what’s internal. How?

Bryan Caldwell 1:00:51
So, yeah, but at the same time, it gets me thinking more, what am I a lot of times, what am I really mad at? Or, you know, it just helps me be more forgiving, well before, I was just so positive all the time and laughing and having fun to where now it’s like even more of my life to where I’m laughing having fun all the time, even the most unhealthy situations where I should be upset or mad or empathetic, but it’s always like making jokes, making jokes, making jokes. And I don’t know that maybe that has helped with my recovery. It’s just looking at the higher side of everything.

Bill Gasiamis 1:01:33
Look it’s definitely better than being angry for no for a reason or no reason, because the chemical structure in your body changes when you’re angry, it doesn’t become supportive of good health, cortisol, adrenaline, all that sort of stuff doesn’t help, especially if it’s on all the time. You know, these episodes help me be nicer too. I think because I remember, just last night, we had family over, about 20 of us. My my sons have their birthdays five days apart. One of them turned 25 yesterday, and the other one turned 29 five days ago.

Bill Gasiamis 1:02:16
And they both don’t live at home, but they kind of said, Should we get together for birthday? For our birthdays? I said, Yeah, we should get together and invited just the direct family, my wife’s sisters, my brother, my parents, and the kids from those families, like, it’s and the and girlfriends like, that’s 18 people, and it’s a Thursday night, so things get and it’s a bit hard. Everyone’s been at work all day. Everyone’s probably dead. I am. My wife’s at work, so I’m preparing everything, picking up, running around, doing all that stuff.

Bill Gasiamis 1:02:58
And then they all hang around and no one leaves. They’re still here at midnight, and I kind of want to send them off, but I didn’t say anything, because it’s a birthday party, right? What are you going to do? Just kick people out anyway. So I went to bed cranky, and my wife went to bed wiped out, like completely exhausted, and then I had three hours sleep, and then I woke up to go to the toilet, and I didn’t go back to sleep. So I am completely depleted. So then my wife, my wife wakes up at 5:30 or 5:40 in the morning to go for her morning walk.

Recovery and Motivation After Stroke

Bill Gasiamis 1:03:37
And then the cat won’t stop meowing. She just starts meowing and won’t shut up, which means that my alarm was supposed to go off at 630 so I do have some like in and out of consciousness for a couple of hours just before my alarm, and then the last 45 minutes, my cat ruins it by by meowing and being an idiot. So then I wake up and come and I’m completely grumpy, and I did not greet my wife appropriately in the morning when I woke up and when I left to go to set up my guys. I’ve got some guys doing some work nearby.

Bill Gasiamis 1:04:15
When I went to set him up for the day, meet, meet the client, etc, I left the house being a bit grumpier, or just, you know, sleep deprived, or all those things that happened. And I’m reflecting on it as you’re telling me your story about how you are, probably I don’t know what you said nicer, or something like that. And I reflect on how I behave based on how people tell me about their behavior and what’s appropriate and what’s not appropriate, and it allows me to be a better person. So this is like my therapy session as well.

Brittany 1:04:55
So speaking of animals, your cat, um. Ironically, after Bryan got his transplant, about six months later, we found out our 11 year old dog was diabetic, so Bryan got rid of his diabetes, and then we have a dog that has diabetes, so we had to manage her food. We have to give her insulin, but she knows her schedule. So if you’re not up at 6am she’s barking at you every single day for the last two years.

Bryan Caldwell 1:05:27
But that was part of what was part of my routine, was mentally to get up, feed the dog, and that’s usually when I would start my workout, get that dogs all taken care of, and go up there, lift, my two pound weights, my three pound weights, whatever, and just the routine. Do, do the work like you don’t want to work hard, just show up.

Bill Gasiamis 1:05:50
You and the dog on a similar routine.

Bryan Caldwell 1:05:56
No doubt. But I mean that in itself is just something that was something that I clicked with, and I’m I’m holding on to that. So every day still, until she passes, that’s my routine, to get up every single day, take care of the dogs, go do my workout, and then these days, it’s take care of the dogs, and then by that time, my son’s waking up for school, so I either have to go take him to school, go get her coffee, whatever I’m gonna do, because she’s not gonna wake up for another couple hours, but I’m taking my jobs to take care of everyone in the morning.

Bill Gasiamis 1:06:35
What a slacker. Couple of extra hours. Oh my gosh. Uh, you know, when I wasn’t working, when I wasn’t able to work after I got home, after brain surgery, it was really important for me to look after the family, make sure that the kids were ready to go to school. They had, you know, their little bits and pieces, whatever they needed. And then when my wife got up, had breakfast and all that kind of stuff, and then left, I tidied, vacuumed again, you know, I couldn’t walk properly as still, and I wasn’t that active, but I could do the chores as slowly as I needed to.

Bill Gasiamis 1:07:15
But I could get them done by the end of the day. And then it was really important for me to have the meal prepared when everyone came home from work now they didn’t appreciate it like I did. Now, don’t get me wrong, they appreciated the meal, saying, of course, but I made it such a massive value for me that they just took it as well. He’s at home, of course, he’s going to have a meal for us, you know, like, that’s what happens when you come home from school and when you come home from work, because you’ve worked all day, your partner makes a meal.

Bill Gasiamis 1:07:47
So I remember having some episodes of perhaps they didn’t like the kids, didn’t like exactly what I was feeding them, or with their friends, they went and got some takeout just before they got home, or whatever, and then they weren’t completely hungry, and then I would be I’ve just been slaving over the oven all day. I’ve been doing all the chores, and now you’re not even eating my food. And I went, I became that guy. I became the whinging parent partner who in my attempt to make it, you know, what I valued, you know, something, make them value.

Bryan Caldwell 1:08:32
The same thing that you value, yeah.

Bill Gasiamis 1:08:34
I made it about me. You stopped being about them. I made it about me, and then I was whinging because I wasn’t being valued. Where, of course, they went back to normal. They just wanted to be normal. They wanted to go to work, they wanted to go to school, they wanted to come home. They didn’t want drama, stroke, drama, and all this stuff. But I couldn’t, but I couldn’t see it. I couldn’t stand I used to get really upset if it wasn’t, you know, to if they didn’t acknowledge, sir Bill, you know and Ha, make a fuss.

Bryan Caldwell 1:09:10
How you said it was kind of like your therapy in this conversation. Well, this is kind of like my therapy also, because I experienced the same exact thing where I expected them to appreciate it same way I valued it. And it wasn’t like that at all. So now it’s more like, hey, like, don’t care about what they think, what they should be thinking, or whatever I’m doing this because these are the cards I was dealt. These are the things I have to do. This is my job now.

Bill Gasiamis 1:09:42
Yeah, it’s it becomes more of a responsibility.

Bryan Caldwell 1:09:47
Which everyone’s able to do their thing, whatever it’s work, school, whatever I have to be the grease that greases the gears.

Bill Gasiamis 1:09:58
Yeah, I love it. It’s, it’s finding your place again and then doing it wholeheartedly and not expecting all the fanfare afterwards, you know, just because you did your bit.

Bryan Caldwell 1:10:15
I never really breathed at the after my stroke, like everyone says I would be but that’s the one thing I struggled with, was seeing perspective of what I see compared I want people to understand what I see, and that’s just not the case. They’re never going to understand I mean, yeah, you can have similar stories of different stroke patients, and they’ll understand a lot better, but no one’s going to understand you exactly how you’re feeling.

Bill Gasiamis 1:10:43
Yeah, Brittany, from a partner’s perspective, there’ll be partners listening to this now probably, you know, with the stroke survivor caregivers partners, they’ll be listening to this. What would your advice be to someone who’s a partner who’s going through this right now?

Bryan & Brittany – Perspective on Life Post-Stroke

Brittany 1:11:08
Man, that’s a tough one. I have really had to kind of try and understand from his perspective, because, like, we were just talking about, you know, being valued, and he would be so upset if I didn’t say, you know, thank you for doing the laundry today, or thank you for doing the dishes. And in my head, I’m like, You did an adult chore, like, Congratulations, you won a reward. Like, why are you wanting so much praise for that? But then at the same time, you know, for a long time I had to realize, like, okay, it takes me no effort, little to no effort, to do, do the dishes or cook dinner.

Brittany 1:11:47
But it takes him 10 times more effort than what it would have taken me. And so, I mean, I’ve struggled with that this entire time, where I don’t always see it from his perspective and what he’s trying to say. And, you know, understand from that, at least in my situation, it does get better, it as long as the recovery is still continuing and the person who had the stroke is still wanting to get better, you know, on a day to day basis, because that’s really what’s going to change the overall outcome of the situation.

Bill Gasiamis 1:12:23
It’s about both of you getting better, recovering, growing. Yeah, same time, isn’t it? Yeah, definitely. What about you, Bryan, all of the stuff that you’ve been through, you’ve probably got, I’m going to use a big word here for you. Maybe it’s not true, but we’re gonna apply it to each other. Wisdom. You got some wisdom about life now and about how to tackle these things. What wisdom would you like to impart on people that are going through it right now.

Bryan Caldwell 1:12:55
Not trying to drill into your partner or any kind of person’s head about seeing it from your perspective, that’s just one thing that’s separate. But the thing that really helped me the most was celebrating. I mean, you can’t celebrate physically or with your partner or whatever if something mentally you feel like you’re achieving or you’re you’ve had a win in any way, like you did the dishes for the first time, you vacuumed for the first time, you drove for the first time, whatever it may be, celebrate it mentally. If it pumped you up, like, let that keep you going.

Bill Gasiamis 1:13:36
Yeah, that’s really good advice, because you can celebrate little things. People will celebrate tying their shoelaces again for the first time, or putting a band, a hair, a hair band around, you know, the daughter’s hair, or whatever, or helping one of the kids do something that they haven’t been able to do for a while. They are such important things because it starts to sort of create a glimmer of hope, of well, if I’ve done that, what else can I do now?

Bill Gasiamis 1:14:10
And I think sometimes it’d be great if the caregiver had that awareness to sort of say, do you know that x time ago, you weren’t doing that, or you weren’t able to do that, or when you weren’t capable of that, I think that’s kind of how you can motivate somebody with very little effort, is just say, you know, three months ago, you weren’t doing any of that, now you’re doing all of that. Sometimes the stroke survivor doesn’t see it. I didn’t realize my speech was improving. Of course, my wife did, but she didn’t say, by the way, your speech is much, much better.

Bill Gasiamis 1:14:49
My psychologist did, though she said to be oh my gosh, since the last time I’ve seen you, you’re speaking much better, more clearly. You’re finishing. Of sentences you seem to get it be getting stuck less in your thoughts before the sentence comes out. And that was really helpful. That was really something that made a big difference, just bringing people, bringing into my awareness what I didn’t notice. I think that’s what you’re saying, and then celebrating it.

Brittany 1:15:22
I think, as a caregiver, sometimes when you’re in that situation day to day, you don’t necessarily recognize it, where someone who doesn’t see you as often might recognize it quicker. It’s kind of like Logan, if someone doesn’t see him for a year and they see him, they’re like, Wow, you’ve grown so tall, whereas there’s a lot of stuff happening that he was doing that probably should have been, you know, celebrated. But looking back now, it’s like, yeah, there was a lot of he got on a dirt bike when he probably shouldn’t have.

Brittany 1:15:56
He rode a bicycle fairly quickly. He laced up, you know, Logan’s shoes. There was just a bunch of little things over time that he probably mentally took a note of and celebrated, whereas I watched him do all of it. It just, I don’t know, it just almost sometimes didn’t seem like reality, like he didn’t know how to do it and was relearning all of it.

Bill Gasiamis 1:16:20
Yeah, everyone’s gonna observe it very, very differently, and that’s really the important thing. And I suppose what we’re saying is just bringing attention to how helpful it is when you notice something in yourself as the stroke survivor, and then the caregiver in the stroke survivor by being able to just motivate, I think it’s a I think it does a lot of motivational good to say, X months ago, you weren’t doing that, even though you’re doing it badly. You don’t know what I mean, like writing, even if your writing is terrible. X months ago, you weren’t even doing that.

Bill Gasiamis 1:17:00
So now it’s improved out of sight, you know. So I really appreciate the update on this. I just love good story, a good kind of not end, but a continuation, like a chapter two, or what episode two of, well, it’s exactly what it is, right? Episode Two, yeah. So I just love that you guys are here, that you’re I get to see you again. I get to experience how far you’ve both grown, how much recovery has happened, how much you guys have been able to be the recipients of good fortune.

Bill Gasiamis 1:17:40
Because I think, I think part of it is you, like it’s it’s good fortune, but it’s also you, you seem to be able to find the things that you need to find just at the right time to benefit from.

Bryan Caldwell 1:18:01
It’s energy is attracted to different positive energies. So maybe, I don’t know if it’s fate, maybe it could be science. Who knows? But overall, energy was connected at the right spots of good energy, and all in all, I mean, I’m not going to say great experience, but, like, it’s a great experience.

Bill Gasiamis 1:18:27
That’s weird to hear, though, isn’t it? It’s weird to say even.

Closing Remarks and Acknowledgements

Brittany 1:18:31
Yeah, definitely. I Yeah. I think when you when we talk about the stroke and how it happened, and he always talks about fate. He had the same kidney doctor in the hospital that he did outpatient during dialysis, and I didn’t, I guess, recognize how bad it was. And she saw him for one of the first times that he was out of the hospital, and she goes, Wow, you look so good. And she had basically said we were waiting for you to just die in the hospital because your kidney function was so bad, and so she goes to see you walking today is a miracle.

Brittany 1:19:05
And so fate, like again, they had said, if he didn’t have the stroke, he would have died in his sleep, fairly it would have been quick, like within the next few weeks or the few months, he would have died.

Bill Gasiamis 1:19:17
These are the dumb reasons why people say stroke is the best thing that happened to them. I mean, it’s just, do you know, like, that’s I say that stroke is the best thing that happened to me. When I first said, I thought, What a dumb thing to say. And when I’ve shared that with some people, some people have taken that really badly. And it’s not that I am encouraging people to have a stroke, and the only way to discover your kidney failure is through stroke.

Bill Gasiamis 1:19:45
And you know, like, clearly, look after yourself, go to the doctor, get your regular checkups, do all of that all the time. But I don’t know, like, I wouldn’t, oh, my God. I. Wouldn’t change it. I don’t know if I would. It’s weird. It’s weird to say.

Bryan Caldwell 1:20:05
A perspective on life is totally different. It was before my stroke, and I’m sure a lot of different survivor strokes, that I couldn’t look at life the same way as I did 1020, years ago, like I just went day to day, did my routine of work nine to five, basically, and not trying to be or do more, just kind of being complacent. And now I’m not complacent. I want to do the most. I want to make most of not my life, but my situation.

Bryan Caldwell 1:20:40
And I’m not just, you know, my goal isn’t just to motivate people. It’s to make a better situation for my family, for myself, like I don’t really focus on anyone else when I have extra time, I love to focus on other people and give them my attention. Do what makes me feel good? As you know that makes you feel fulfilled to do that type of stuff, but overall, it’s for me and my family. That’s all I really focus on.

Bill Gasiamis 1:21:08
I love it. And you know what it is, Bryan, it’s a great example. So when Logan goes through his own life and has adversity, and he can sort of go, Well, how am I supposed to tackle this? He’s got one, well, two amazing examples of how to tackle a terrible time in your life. You know it’s he’s lived it both with you and both with and with Brittany. And you can go, oh, yeah, I know. I know one way that they did it and it led to good outcomes, so maybe I could start there. And I think that is such an amazing gift to give to somebody.

Brittany 1:21:51
Yeah. And I think he even recognizes, like a lot of you know, what we all went through to just probably last year, the year before, I remember him coming home from school, and he goes, this girl, she she went in the corner because she was having anxiety because she didn’t get to see her mom all day or something like that. And he goes, Do they not realize I didn’t see my dad for three months? And I was like, that’s not an everyday thing that people go through, but you went through it and you got through it. Look at it from that kind of perspective.

Bill Gasiamis 1:22:27
It’s completely different perspective for a kid that age, isn’t it? For an 11 year old.

Bryan Caldwell 1:22:32
Yeah, it’s amazing right now. I think the only focus for him that he’s back to normal life, he’s he’s a much more critical thinker than he was back then. I mean, he’s only 11, so right now it’s, you know, I can’t afford this Pokemon card, so I gotta figure out a way to make enough money to buy this Pokemon card. So those he likes to find different ways to motivate himself, which I can only imagine he can receive from our experience.

Bill Gasiamis 1:23:00
Yeah, problem solving. I love it. Hey guys, thank you so much for joining me on the podcast. I really appreciate it getting to chat to you again and hearing the follow up and seeing how amazing you’re doing. And I wish you both, all three amazing health continued from here on.

Bryan Caldwell 1:23:23
Well, nice talking to you, Bill. Good to see you. It was nice to chat with you again.

Bill Gasiamis 1:23:29
Well, that brings us to the end of this episode. I want to thank you for being here, whether you’ve subscribed on YouTube, left a review on Spotify or Apple podcasts, brought a copy of my book or simply chosen not to skip the ads. Every bit of support helps this podcast reach survivors who need it most. And a special thanks to my Patreon supporters. You’re helping me keep this work going one conversation at a time.

Bill Gasiamis 1:23:53
If you’d like to join us there, you can find the link at patreon.com/recoveryafterstroke, remember, recovery isn’t about going back to who you were. It’s about discovering who you can become. Keep enduring, keep becoming and I’ll see you in the next episode.

Intro 1:24:09
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Intro 1:24:39
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Stroke Symptoms for Men: What You Need to Know

When you hear the word “stroke,” the first thing that comes to mind might be the FAST checklist: Facial droop, Arm weakness, Speech difficulty, and Time to call emergency services.

While these are critical warning signs, they’re not the whole picture, especially for men. Stroke symptoms for men can sometimes be subtle, misleading, or even mistaken for other health issues. Knowing what to look for can mean the difference between life and death, or between a long recovery and a shorter one.

Why Stroke Symptoms Can Look Different in Men

The biological and lifestyle factors that influence stroke risk can also influence how symptoms show up.
Men may:

• Experience sudden weakness or numbness without noticeable facial droop

• Mistake early symptoms for fatigue, stress, or muscle strain

• Ignore warning signs because they don’t feel “serious enough.”

• Present with cardiac-like symptoms such as arm pain or chest discomfort
  

This makes awareness and action absolutely essential.

Common Stroke Symptoms in Men

While everyone should know the FAST signs, men should also be aware of these additional symptoms:

• Sudden loss of balance or coordination

• Vision changes in one or both eyes

• Sudden confusion or trouble understanding speech

• Severe, unexplained headache (often described as “the worst ever”)

• Sensation changes such as tingling or numbness in the limbs

• Sudden weakness in an arm or leg, especially on one side of the body

• Feeling unusually hot or sweaty without cause

• Rapid spike in blood pressure

If any of these appear suddenly, treat them as a medical emergency. Even if the symptoms fade quickly, it could be a transient ischemic attack (TIA) — a serious warning sign for a future stroke.

What Is an Ischemic Stroke?

An ischemic stroke occurs when a blood clot blocks blood flow to part of the brain. This is the most common type of stroke, making up about 87% of all cases.

Two main types are:

• Thrombotic stroke: A clot forms in a blood vessel supplying the brain.

• Embolic stroke: A clot forms elsewhere in the body and travels to the brain.

In both cases, brain cells begin to die within minutes. Quick treatment can save brain tissue and improve recovery outcomes.

Why Men Sometimes Delay Treatment

Men are statistically more likely to delay seeking help when symptoms are mild, intermittent, or don’t match their idea of what a stroke looks like. Common reasons include:

• Believing it’s “just stress” or fatigue

• Not wanting to “bother” anyone

• Thinking symptoms will go away on their own

• Prioritising work or family commitments over immediate care
  

Unfortunately, every minute counts during a stroke. The sooner treatment begins, the better the chances of minimizing long-term damage.

What to Do If You Suspect a Stroke

• Call emergency services immediately — don’t drive yourself.

• Note the time symptoms began — this affects treatment options.

• Stay as still and calm as possible until help arrives.

• Do not eat or drink; you may need urgent surgery or medication.
  

Life After Stroke: A Lifelong Recovery Journey

For many men, stroke recovery is not a “three-month sprint” but a lifelong process. The early days often bring the biggest visible improvements, but smaller gains can still happen months or even years later.

Recovery may include:

• Physiotherapy to regain strength and mobility

• Occupational therapy to improve daily function

• Speech therapy if communication has been affected

• Ongoing management of blood pressure, cholesterol, and lifestyle factors
  

The key is consistent effort and a positive mindset, even when progress feels slow.

Preventing a First or Second Stroke

Men can lower their stroke risk — or prevent a recurrence by:

• Taking prescribed medication consistently

• Monitoring blood pressure regularly

• Eating a balanced diet low in processed foods

• Staying physically active within personal limits

• Avoiding smoking and limiting alcohol

• Keeping follow-up appointments with healthcare providers
  

Final Word

Stroke symptoms for men aren’t always obvious. You might feel “off” without knowing why, or experience symptoms that seem unrelated to the brain. That’s why awareness is so important and why taking action immediately is the best decision you can make for your future self.

Frequently Asked Questions

1. What are the first stroke symptoms in men?
   The most common early stroke symptoms for men include sudden weakness or numbness on one side of the body, facial droop, difficulty speaking, loss of balance, vision changes, and severe headache. However, some men experience subtler signs such as arm pain, feeling unusually hot, or sudden confusion.
   
   
2. Can stroke symptoms in men be different from women?
   Yes. While many symptoms overlap, men may be more likely to present with weakness, numbness, or trouble walking, while women sometimes experience additional symptoms like nausea, hiccups, or chest pain.
   
   
3. What is the difference between an ischemic stroke and other types of stroke?
   An ischemic stroke happens when a blood clot blocks blood flow to the brain. This is different from a hemorrhagic stroke, which occurs when a blood vessel in the brain ruptures. Ischemic strokes are the most common type, accounting for around 87% of all strokes.
   
   
4. How quickly should you get medical help if you notice symptoms?
   Immediately. Every minute counts during a stroke. Prompt medical treatment can limit brain damage and improve recovery chances. Even if symptoms fade quickly, it could be a transient ischemic attack (TIA), which is a major warning sign for a future stroke.
   
   
5. What is the best treatment for an ischemic stroke?
   Treatment often includes clot-busting medication (tPA) if given within a certain time window, or mechanical thrombectomy to physically remove the clot. The choice depends on how quickly you get to hospital, the stroke’s location, and your overall health.
   
   
6. Can men fully recover after an ischemic stroke?
   Many men make significant recoveries, but outcomes vary depending on the severity of the stroke, how quickly treatment began, and commitment to rehabilitation. Recovery may be a lifelong process, with gains possible months or years later.

Disclaimer

This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Stroke Symptoms for Men: Kevin Nakawatase’s Ischemic Stroke Story

Kevin’s ischemic stroke began with symptoms most men overlook — his recovery shows why awareness and action matter.

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Highlights:

00:00 Kevin Nakawatase’s Stroke Symptoms and Initial Reactions
05:18 Kevin’s Initial Stroke Symptoms
13:01 Accepting The Reality of Stroke
16:46 Dealing With Post-Stroke Paralysis
21:10 Having a Recovery Mindset
30:35 The Small Changes After The Stroke
38:14 Stroke Recovery During COVID
45:05 Advocacy and Community Involvement
50:16 Sharing Different Versions of Stroke

Transcript:

Introduction – Stroke Symptoms For Men: Kevin Nakawatase’s Initial Reactions

Bill Gasiamis 0:00
Before we dive in, a big thank you to Banksia Tech for supporting this episode, proud distributors of the Hanson rehab glove by Syrebo. It’s designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, you’ll hear more about it later in this episode.

Bill Gasiamis 0:20
Links are in the YouTube description and at recoveryafterstroke.com What if the signs of stroke didn’t match the fast checklist at all? No facial droop, no slurred speech, no obvious weakness, just a sore shoulder, a strange heat in your body and a gut feeling something wasn’t right.

Bill Gasiamis 0:40
That’s how it started for Kevin nakawatasi On Christmas Eve, within hours, the celebration turning into a medical emergency, and Kevin was facing complete paralysis on his left side. But this is not just a story about symptoms and hospital stays. It’s about the quiet discipline it takes to keep showing up for recovery even years later, it’s about finding purpose through advocacy and community, and learning that the plateau is just another phase to push through.

Bill Gasiamis 1:11
If you’ve ever been told you’ll never get that back, if you felt your progress was slow and wondered if it’s worth the effort, if you want proof that more recovery is possible long after the early months, then this episode is for you. Let’s dive in. Kevin Nakawatase, welcome to the podcast.

Kevin Nakawatase 1:31
Thanks for having me.

Bill Gasiamis 1:32
Thank you for being here. Tell me a little bit about if you can remember, because it was a while ago what life was generally like for you before the stroke.

Kevin Nakawatase 1:44
Oh, my life was fairly active. I played sports year round, ice, hockey, golf for the main things, and baseball, they’re the three. I played year round. Well, hockey year round, because we can play year round because of the weather. Baseball and golf for more seasonal so from April till about October, and then that’s been basically I spent my life, and then I work for an events company.

Kevin Nakawatase 2:11
I’ve been doing that for over 30 years, and married, no kids, and just living life vicariously through. I guess what we’re supposed to do when we get, you know, as we were taught by our parents, that, you know, get married and have a good life and things like that, save your money all those different things, right? So that was the standard fare.

Kevin Nakawatase 2:35
That was things, you know, I was working at the church and stuff. When I was more in the youth age, I wanted to be a Olympic coach was sort of my ambitious goal when I was trying to when I was going to school, I took I graduated through that degree in in Toronto, and the plan was to go to teach at a high school and then, and then end up in the Olympics.

Kevin Nakawatase 3:00
But some things changed during my like course of doing something like that, so I got into the events game, really enjoy it, and I’m still teaching people, because, you know, you manage people. I worked in retail as well for a while, so all these different things came at me where I continue worked with people, and that’s basically what I wanted to do my whole life, is work with people. So I’ve run camps, you know? I’ve coached teams, and even after the stroke, it continues on right now as as we speak.

Bill Gasiamis 3:33
Yeah, in 2014 How old were you?

Kevin Nakawatase 3:36
I was 54 when this all happened, so I am 10 years along now.

Bill Gasiamis 3:42
Did you have a sense of your health back then? How it was? Did you consider yourself healthy, unfit, any of that kind of stuff?

Kevin Nakawatase 3:51
Yeah, I was on blood medication, pills. Did I take it regularly? No, was I should I’ve been in better shape? Yes, but I wasn’t Should I’ve taken care of my health? Yeah, I think I took my health for granted, like most people do, and then, little did I know, until my mother, just before a passing we found out my mom had many TIAs, so she had two of them in her lifetime, and we had no my brother and I, my our family had no idea this was going on.

Kevin Nakawatase 4:22
The only thing we kind of knew was mom kind of we thought she was getting lazy, in terms of, like, she was starting to use a walker more. She wouldn’t walk. She needed help. We she wasn’t that old, like at the time, she’s, like, in her late 70s. And we didn’t really think, you know, she seemed really good, but then with the walker we bought, we almost as a mistake, because we thought, because she had the walker, she wanted us to push.

Kevin Nakawatase 4:48
But little did we realize that she actually was having strokes and that caused her to stop walking. So after you hear all that, you know the hereditary and getting a stroke and all that. You know, part of the gene the gene pool, I guess, led to what’s happened, what happened to me on Christmas Eve is when I had mine.

Bill Gasiamis 5:12
Do you recall that day? Was it normal? Was it any sense that there was anything wrong?

Kevin’s Initial Stroke Symptoms

Kevin Nakawatase 5:18
No, um, so what happened was, I was wrapping gifts. We’re going to go to our in laws, my Greek in laws, by the way, we’re going to go to their place for Christmas Eve. I had a sore shoulder, so my left shoulder is really sore, and I kind of got up and I was sitting on the floor wrapping. I got up and I kind of lost my balance a little bit, but I just attributed to I’ve been sitting for a couple hours wrapping gifts and that. So, you know, nothing special.

Kevin Nakawatase 5:44
So I got ready to go out, we ended up at my in laws place, but once I got to my in laws place, I didn’t feel good. I felt really off. We were talking about winters. So it was really cold. It was like minus 20 out. But I had my jacket off, like I was standing with a shirt on that was it, because it was so hot. So my in laws saw me, and they said, you should go to the hospital just get looked at.

Kevin Nakawatase 6:08
Thank God, I took their advice. Went down to the hospital, and the thing they were doing was checking me for heart attack because I had a sore arm, sore left arm, which is the proverbial sign, you know, we have FAST for stroke, but you know, with heart attack, it’s usually sore arm. And you know, chest pains, obviously. But I had no chest pains, so we did the ECG, everything.

Kevin Nakawatase 6:33
So I missed the opportunity to get the medication as well. But we did all the ECG, nothing. My doctor was going to send me home that night. He just said, look, we can’t find nothing. You seem fine. I said, I could have told you I have a, you know, my arm. And then all of a sudden, before I was leaving the hospital, my blood pressure went up to 220, over 120 which at the time is then now you’ve got some issues. There’s something going on to have your blood pressure that high.

Kevin Nakawatase 7:04
So he did some more tests, and he found out. He did MRI or a CT scan, and they found the block at the back of my right side. And so he said, You’re having a stroke. So I said, Oh, okay, now what? And that was the beginning of my next life. What now? What is sort of the whole, you know, like everyone that’s had a stroke, what now?

Bill Gasiamis 7:31
Yeah, so then you’re having a stroke, you get admitted, they intervened. How did they intervene? What happens with the clot in the back of the neck?

Kevin Nakawatase 7:42
So I’m assuming they were going to, they didn’t go in and take it out or anything, nothing, because they’ve seen it. I saw the the X ray or CT scan, and saw the lump, and I guess they filled me up with or give me medication intravenously for about probably close to a week, I had it from the day went in and then until I got moved over three days later, yeah, so roughly, for about almost a week, about five days, I was on some kind of intravenous.

Kevin Nakawatase 8:16
So I guess the medication they gave me was to, I guess, eliminate the the clot as it was going, I guess it did or whatever. Because even when I moved to my rehab hospital, doctor didn’t understand why I was still my blood pressure was still so high. But the doctor at my first place, he’s a neurosurgeon, said we’re going to keep you on a higher level that way, as you decline down, your body won’t get into a shock of having a stroke.

Kevin Nakawatase 8:48
So I did have a typical stroke, like most people were. I didn’t have FAST. If you had to talk to me, fast would have been way online, because I didn’t have, you know, droopy face. I wasn’t slurring my words. I had nothing like, you know, that was it, was just all physical inside, nothing outside that people would have recognized.

Bill Gasiamis 9:12
Same here. But you seem nonchalant about it now. We’re chatting about it like it’s something that happened in the past. And it definitely is right. But what was it like to receive that news? How did you respond at that moment?

Kevin Nakawatase 9:30
So the day I found out, it was like midnight, Christmas Eve, they had a transfer in by ambulance. And you know, it’s Christmas morning, there’s nothing going on, no traffic. So they transferred me from a hospital over to another hospital, which is happened to be about five minutes away. So I get in there, and I start talking to the I had a nurse, a male nurse, who was in my I was in ICU, and for 48 hours he’s he was talking. You mean all that I made my peace with God.

Kevin Nakawatase 10:03
I know it sounds weird, I got mad at him, I basically told him I used the four letter word in my head. I didn’t yell in the hospital, but I kind of said to God. I just said, look, I have no idea what the hell’s going on, but if you’re going to give me this, if this is what you want from me, this is, you know, I’m religious, but you know, I don’t, I don’t practice. And I just said, look, if you want me to work hard to get better, and this is your sign, then, you know, let me get better.

Kevin Nakawatase 10:36
But do me one favor, I’ll work hard to recover. I will do whatever it takes, whatever direction you send me. But don’t you dare give me a second stroke, because I’ve heard stroke, you know, from other people. You know, secondary. I had a lot of people have secondary. I don’t know about yourself, but I did heard that people do get it a lot of times like it’s, I don’t know the numbers are big. You know, 70%, 80% people can get a reoccurrence.

Kevin Nakawatase 11:06
And I made my peace. That was the only time I ever got angry. That one moment lying in bed, and it’s like one or two in the morning. I’m lying there waiting, and I’m I know I’ve effed up if you, if you looked at because if I take it like you asked me a question, if you’re taking care of yourself, I probably may not have been in that position. You know, if I’d taken my meds, worked out, got better, health wise, ate better. I probably would be in a better position.

Bill Gasiamis 11:33
But if you’re working on hand recovery after stroke, there’s a tool worth knowing about, the Hanson rehab glove by Syrebo is available through Banksia Tech. It’s safe to use at home even years after stroke, with six therapy modes, including stretch, grasping, release and a patented mirror function, it helps retrain your brain and hand together.

Bill Gasiamis 11:55
Banksia tech ships internationally, and it qualifies as a low cost assistive technology. Visit Banksiatech.com.au or check out the links in the YouTube description and show notes at recoveryaftstroke.com to learn more. Now let’s pause. You’ve just heard Kevin describe the moments his stroke symptoms defied the fast checklist, and how in just a few days, his left side stopped responding entirely. He could have given into the fear, the statistics, that this is as good as it gets, mindset.

Bill Gasiamis 12:29
But he didn’t. He pushed harder. He made rehab his full time job, even after the formal therapy ended. If you’re in that place where your progress feels slow, where it’s tempting to ease off. Let Kevin story remind you, the plateau is not a full stop. Gains can still come years later. Effort compounds over time. Let’s get back to Kevin and how he turned personal recovery into public advocacy. Was that your acceptance moment? Did you accept that right there and then?

Stroke Symptoms for Men: Accepting The Reality of Stroke

Kevin Nakawatase 13:01
Yeah, I did. I said, what am I going to do? Like, it’s sort of like I play poker, you know, not for a living, but, you know, when you play cards, you play sports, you can’t change the moment that passed once it’s happened. If you’re playing cards, you’re dealt the hand. Play the hand. That’s just the way guards are played in sports. If they score a goal on you, or hit a home run, or whatever sport you’re playing, that moment’s done. You have to accept the fact that your team played lousy that game, and you move on.

Kevin Nakawatase 13:32
And I coached for years, and you can’t dwell on the past. So I couldn’t dwell on it. And you know, I had no excuses. I blame myself for the stroke. I mean, I know a lot of people don’t, because there’s different. You know, I met a lot of people that were healthy and in great shape, and things just went awry. Yeah, for me, was okay. Kevin could have taken care of better care of himself, he should have, and he didn’t, and these are things so and answer your question, Bill, yeah, I made my peace with myself.

Kevin Nakawatase 14:06
That was the fine moon right there. And then the moment I found out what was going to happen, the doctor came in the next morning. I didn’t know I was going to be paralyzed. I thought it was just going to be okay, you know, I’m going to have a stroke, and then I’m just going to get better in three months, and I’ll just get back to normal, but I’ll take care of myself.

Kevin Nakawatase 14:27
And I was wishful thinking, because the doctor came in the next morning said, this is going to get worse before it gets better. And I go, how can it get worse? I’m lying here on Christmas morning in a hospital. He goes, you’re going to become paralyzed. And I had no idea there was paralysis in stroke. I’ve seen stroke people, a lot of them have disabilities with walking their hand. What I didn’t know paralysis was part of the numbers.

Bill Gasiamis 14:53
How did he predict that?

Kevin Nakawatase 14:55
He I guess he knew because of where my blockage was and. The was going to be because it was at the very back, and I think he knew, based on what was the communication line from my right side to my left side was going to be non-existent, which is so true because within the day by Christmas, Boxing Day. We call Boxing Day here the day after Christmas, and I was in a chair, and I couldn’t use my left hand, I couldn’t stand all those things were gone. It’s like, I was, like, devastated, but I knew they told me this is what to expect. So, you know, I’ve always trusted doctors to the point.

Bill Gasiamis 15:38
Yeah, and you’re watching your ability on your left side decline. Devastated, yeah, but then, how do you deal with that, like are you watching it? Are you going, Oh, my God, it’s going. Are you looking at it? Are you feeling it? Are you trying to walk? I would have been. I was kind of when I started noticing after the brain surgery that I couldn’t feel my left side properly, and I couldn’t walk, when I got out the bed for the first time and fell over because my left side wasn’t working.

Bill Gasiamis 16:14
And they pulled me into rehab like I was kind of looking at it, willing It, telling it, making it, doing everything I could to just, I don’t know, coach it back to better, which was not going to be the way that it was going to work out. But I kind of got there. It took a lot longer than I imagined as well. But I woke up from surgery and it wasn’t there, but you were seeing it decline.

Dealing With Post-Stroke Paralysis

Kevin Nakawatase 16:46
Yeah, I didn’t go into surgery, like a lot of people. I just went to bed. So what had happened was the nurse that was there, I had he, I talked to him a lot because there’s no doctors around, and he I had a night nurse, and he kept talking to me, and I was looking at my hand. I really noticed when the paralyzation was setting in. It was I looking at my aunt.

Kevin Nakawatase 17:07
Well, my hand was underneath the cover of the blanket, and I’m trying to tap, I’m trying to tap my leg like just like that, and it felt like I was tapping my I was felt like my hand was moving, but it wasn’t because it couldn’t move. And like, I’m thinking, like, I’m going, like this now, and it’s like, okay, my hands moving, and I can see my hand move under the blanket. I didn’t want to look. It was kind of like, I hit it.

Kevin Nakawatase 17:32
And I said, Okay, let me see what’s going to happen. And then I had to start helping my hand out because we couldn’t move it. And I looked at my hand, I asked the guy, go, what the hell is going on like? Why is my hand? He goes, that’s the paralysis. Your whole body shutting down. The other thing too is I had a lot of spasticity in my left leg at the beginning, before the paralyzation sank in, and my leg kept going up and down every five minutes.

Kevin Nakawatase 17:59
So I look like a kicker, like from rugby or soccer or something. So my leg kept going like this, and I kept looking at the guy, and I go, what the hell he just goes. Your body’s spasming out right now, and you’re going to have a problem with that for who knows how long, but for the next while. And I just felt like I was playing a soccer game, like I was like those 20 men, you just kick it and you will, and you look at it, or if you play foosball, like the thing’s just doing that that drove me crazy, like it was just like, what the hell? My leg just keeps moving and wouldn’t stop. So, you know the term Happy Feet.

Bill Gasiamis 18:33
Yes. So there was acceptance of what happened. But what about what was happening? Were you able to kind of get your head around that and go, Okay, whatever this is, we’ll work it out. Or was it more challenging?

Kevin Nakawatase 18:48
No, I’ve always been and you asked me a question back, like all of my life, like I’ve always lived, I’m not a panicky kind of guy, and I think, you know, my wife sometimes doesn’t like that, because I seem very calm when things happen around us with friends. I don’t panic. I know things can be done, but panicking, even when I coached, wasn’t my style, because if you panic and the kids see you’re out of control, the kids are going to get out of control.

Kevin Nakawatase 19:13
So you have to stay in the moment, and you have to kind of stay forward. And I try to implement, some of the things I taught kids when I was coaching the same thing I was teaching myself. I said, Look, you’re going to go through hell for a while, and I’m sure you’re going to get the best care possible. And all you gotta do is you gotta deal with it as it comes and you’re talking to a guy like you know, moving forward is I never went to the gym, I didn’t work out, I didn’t do yoga, I didn’t do anything.

Kevin Nakawatase 19:47
So my life was just sports, like playing. That’s where a lot, that’s where all my exercise was. So it was like, it’s a reversal of fortune, because I couldn’t play sports anymore. And then. And I tried, but I couldn’t play like I used to. And then working out, working with trainer and all that after the fact, was something I had to implement, because I was the only one who’s going to get better.

Bill Gasiamis 20:12
Yeah, how long did you spend in that acute phase where just diagnosed your, your left side’s not working, you’re still in hospital in the early days. How long did that last? And then how long after that, did you end up in rehab?

Kevin Nakawatase 20:28
Three days? So I went in boxing day, and then, because of the holiday, it was very skeletal. So they put a request, I guess after the doctor saw me, and a physiotherapist came in on Boxing Day and was working with me, they did. They determined I needed to get out of there fast and get to a rehab center. So I went in on Thursday, I think, and I was in a rehab facility, my new facility, on Monday morning they, they ambulance me out there Monday morning, I was starting physio Monday afternoon, because, I think with the paralysis, it was only going to be temporary.

Stroke Symptoms for Men And Having a Recovery Mindset

Kevin Nakawatase 21:10
The doctor knew that, and I think he wanted me to keep my joints moving and keep them active so they didn’t get atrophy. And that’s one of the things I preach a lot to people, like right now, even in support groups nowadays, you know, even though your hand seemed like it’s pretty bad, just try to move it. Do small things, you know, I discuss that with people, just that, you know, people think, because it’s kind of dead right now, I look at it like a plant. You can re water plants and get back to normal, same thing.

Kevin Nakawatase 21:44
And that was sort of how I had to anticipate everything is. I was determined to be back on the baseball diamond and play hockey in the summer, within three months, like so in December, I wanted to make it to baseball in April. So three to four months, I wanted to be back to normal.

Bill Gasiamis 22:06
Did you get back?

Kevin Nakawatase 22:07
No, because it was kind of funny. My occupational therapist, Stephanie, I remember her name. She was, we’re going through all the stuff. I worked with her for four weeks, and just before they’re gonna discharge me as an outpatient, I said to her, well, okay, I want to go, I’m I’m ready to go play ball soon. How long is it going to take me to get better?

Kevin Nakawatase 22:31
And she just looked at me, and she did it with a very straight face, but she respected me enough to be honest with me, and said, look, Kevin, I don’t want you to get your hopes up too high, because you don’t know how serious your stroke has been. And I would suggest you just work through the summer. And this summer is not going to be fun and games. You’re just going to be trying to get better.

Kevin Nakawatase 22:52
And she gave me a weight like just before we left. She says, Here, I’ll prove something to you as well. She put a weight down on the table. Had no idea what weight it was. She was pick that up and try to lift it. And I said, Are you kidding me? How big is this weight? Well, I looked at it was really tiny, right? I go, so, okay, this is nothing. So I try to pick it up. I couldn’t even lift it.

Kevin Nakawatase 23:14
And I said to her, how much is this 10 pounds? She goes, No, it’s one. And I go one pound? She was that’s what I wanted you to understand how serious your situation is, and if you don’t get better, you have to work harder to get better. And that helped me too, like it pushed my boundaries of, you know, working out and, you know, getting instructions, which I took forward after the fact.

Kevin Nakawatase 23:42
Because how can I, you know, how am I going to get better sitting around and I know that is one of the things that I know, you and I and all the people we sit with trying to get better has been the hardest thing for everybody, because unless you’re financially rich, unless you’ve got good health care, or you’ve got a good health system within your country, a lot of people just stay home, and then they just and you know, and then you know, covid came along, and all these different things, and that really upset the apple cart in terms of how Recovery went.

Bill Gasiamis 24:19
Man, covid came along six years later, so this is interesting. We’ll delve into that in a minute. So you’ve gone. So this lady who helped you at rehab gave you, kind of one of the biggest lessons, or one of the biggest eye opening experiences, just proving to you that you might be ahead of your mind, might be ahead of the game, like where you’re at right now is recovery, overcoming, regaining your strength, etcetera. It’s not go back to the diamond and start smashing balls.

Kevin Nakawatase 24:59
I tried. So I did go back to the team, it was horrible. It was like, I was like a little kid. I tried skating the next in September of the next after try skating again. And I was like, starting all over because my left leg was so badly damaged, like the hamstrings and everything. So yeah, if it wasn’t for Stephanie and her talking to me and all my therapists, like I had four or five at the hospital, because I went back as an outpatient to the same place.

Kevin Nakawatase 25:37
And one of the great things that I found is when I was there, everybody wanted to work with me, and it’s not because, you know, Kevin’s this nice guy and all that. It had nothing to do with that. It’s just that most of people, when I was in the hospital were in their 70s and 80s, and recovery is going to be very thin and they had no enthusiasm.

Kevin Nakawatase 25:59
A lot of them had cognitive issues, so they couldn’t comprehend so it’s like, if you have a mother in their 70s right now, tell her to go, you know, walk up and down the stairs like it’s something they can’t do that even when they’re normal. So a lot of them are therapists. You know, their frustration is they want to help people, and it’s sort of hard if the people aren’t responding, it’s like you’re talking to yourself.

Kevin Nakawatase 26:24
And whenever I had an empty moment because I wanted five hours a day in Canada, they just implemented three hours a day, cuz it used to be one to two. And then in January of the year I was I was in there. They, they did three. They the man, my minimum was supposed to be three hours. So I begged them. I just said, Give me anybody, and you don’t even have to work me. Give me a task. I’ll do it. So if you The Karate Kid, one was my favorite because they did the wax on, wax off. You ever saw the movie?

Kevin Nakawatase 26:57
So we did a lot of that. And I said, Here, just put me in front of the board. I’ll wax on, wax off by myself. And then all the therapists had to do was sit near me and just keep an eye on me, but didn’t have to work with me. And they loved that, because at the same time, it gave them a chance to see my progression, and they’re also willing to try different new skills to see if, you know, they learn, to see if it can help me, which, you know, I appreciate it immensely that I started getting a lot of this attention to do therapy, and that that really helped in my recovery, and why I got kicked out in 30 days, as opposed to maybe three months.

Bill Gasiamis 27:40
Yes. So interestingly, I had been booked in for two months. And I remember those conversations specifically about, you’re young, and you’re going to get results, whether they knew it or not. I don’t know what it was, but you’re young, you’re going to get results. And they put in the effort, and they were encouraged, and they were encouraged by my attitude, and I was encouraged by their attitude, like it was a loop of amazingness, you know, without their words, it would have been, you know, more for me to work out, more for me to contemplate and understand.

Bill Gasiamis 28:19
But I went in there pretty motivated anyway, you know, I was 40 years old, you know, needed to get out of there. I needed to go home be the kids, work all the usual stuff. But they did use those words. They did allude to the fact that I was 40, and that was a real benefit, you know, in the whole process.

Kevin Nakawatase 28:39
It’s sad, but I’m 54 and I’m the youngest guy in the place, in our wing, in our ward. Because if you look at 54 now, it’s old like in in the terms of, you know how things are, but it’s just the way it is.

Bill Gasiamis 28:56
I was similar one of the youngest people in there as well. And I don’t know it’s good not to see other younger people in there, which means hopefully they’re not being injured by something in the brain. So that whole experience was pretty cool. And I would say, when people asked me, when I got released from rehab, how far along are you? I would say 95% and it’s stayed at 95% since then for 10 years now, when people ask me how far firstly, I tell people I’m fully recovered, I’m fully healed.

Bill Gasiamis 28:56
But I still have all the deficits so but my physical capacity is nowhere near 95% like I can’t run like I used to. I can’t play soccer, I can’t run around with a football or anything like that, but, I can go to the gym, push weights, walk, you know, do that type of stuff, be physical at work, all that type of thing. And when people ask me. How, far along I’m recovered now it’s still 95.

Bill Gasiamis 29:32
What I didn’t realize was what 95 was back then to what 95 is now is a completely different thing, because I was nowhere near 95 I would judge myself by my ability to stand up and look at myself in the mirror, touch my nose, pick up a pen, that kind of stuff. But that was so fleeting. Those wins, those gains, they weren’t massive gains, they were little gains. And if I didn’t focus and concentrate on them for the next 10 years, I’d lose that that would go, it would be so quick.

Stroke Symptoms for Men And The Small Changes After The Stroke

Kevin Nakawatase 30:36
Absolutely, one of the things Stephanie had told me as well too, where her or one of my other therapists, they said, look, in the first six months, you’re going to notice a lot of different changes in your body as you recover. You’ll see the big changes, because in the first six months to a year, the biggest gains in recovery are during that time. And they said to me, do not get sad in the next year, if you’re not recovering, and you don’t think you’re recovering because you are.

Kevin Nakawatase 31:05
And I said, What do you mean? Well, you’re not going to notice as much, because the stuffs are going to be small, like, you know, walking. You don’t watch yourself walk. You can feel yourself walking. You don’t watch yourself, but your wife or your friends are going to make comments to you and say, well, you’re walking better.

Kevin Nakawatase 31:22
Take that as a grain of salt. Take that with, you know, with a lot of enthusiasm, because they’re the ones that don’t see you every day, and they’re the ones that notice these smaller changes in you. But I think that’s when, when I was leaving rehab as an out into outpatient, I took that so wholeheartedly that all my recovery was going to be small down the road, and I’m going to have to accept that. And I my story to everybody is, if a person broke their leg, just broke their leg, they would never recover to 100% they would get back to about 95 and I kind of look at that was the attitude I’m going to have to take.

Kevin Nakawatase 32:02
It’s like, oh, my body’s broken, okay, but I’m going to recover, and I’ll try to recover as much as I can. Like, I don’t know about you right now, but I still stretch a lot. I do a lot of exercises in the house just to keep my just to keep the body from stiffing up, because I didn’t at the beginning, and then I worked with a trainer, like I got right out, and then I start working a trainer. And one of the trainers had pushed me to just continue to work at home, and, you know, just do stretching exercises and do all the small things that keeps your body active, like, keeps the mind telling the body what to do.

Bill Gasiamis 32:43
Yeah. So I would encourage that. It sounds like that therapist was telling you about the plateau, without using the words you’re going to plateau and all that kind of stuff. It sounds like she said, like, when you get there, don’t worry about it, recognize it and then just keep going.

Kevin Nakawatase 33:02
That was her word plateau. That was the word she used.

Bill Gasiamis 33:06
Yeah, brilliant. And that means that at least you’re aware of it and using it as a way to kind of say you’re going to get there. And this is the positive part about it, instead of how a lot of people receive that information from doctors, which is you’re going to reach a plateau and we’re going to kick you out of therapy, because that means you’re not recovering anymore.

Kevin Nakawatase 33:27
Yeah, I’ve heard that a lot, and I’ve heard people. I’ve heard different people. I met some young people because I ran a couple events last year in the States, and I met two people in LA. One was now 32 the other one was 29. They’ve had a stroke at three and seven. The the guy was seven, he was now 29 his parents was told they’re going to let him die in the hospital, and within 24 hours, he had a turnaround in recovery from the stroke not the stroke itself, he has a stroke, but his body got better, and he was able to, you know, not do big therapy like we do, but as a kid, he got to become a kid again.

Kevin Nakawatase 34:11
He still has some after effects. But to hear those stories, I met a guy in Germany last November. I had gone out for a project, and he was told he had a stroke two years ago, and he thought he wasn’t going to speak ever again. And then here he is, two years later, he’s speaking, not well, but he’s speaking, and I just don’t like that kind of stuff. When people are told never, you’re not going to that’s just wrong.

Bill Gasiamis 34:38
I agree. It’s the one of the worst words that people can use, therapists, doctors. It kind of undoes the good work they’ve done. You’ve done all this good work. We’ve spent millions of dollars in medical miracles, machines, training university students. And then you’re going to send the guy home and say you’re never going to do that again. Oh, what’s the point of that?

Kevin Nakawatase 35:03
Yeah, what’s the point doing therapy in the first place? And now just let the guy you know just throw and bury him six feet under, but that’s when you ask the question mentally, that’s where I knew I wasn’t going to let this define me. And you know, maybe you and I are in that small percentage of, you know, we’re not going to let the stroke define us.

Kevin Nakawatase 35:26
It’s not going to, you know, it’s going to make us different in some aspects, but we’re going to be the same people we were, you know, before the stroke. And that’s all I’ve done, is just try to be the guy that people knew me as before, and then, you know, I won’t let the stroke define me. I mean, I never got into the stroke world for first eight years.

Kevin Nakawatase 35:48
You talking to me now is only because in the last two years I decided to do something about it, because I met a girl online, and that’s how we formed our events last year. Is because it just I heard all the stories. There are a lot of horror stories of how healthcare is not here, only in Canada, globally, you know, Australia, Asia. So that really made me sad.

Bill Gasiamis 36:13
We’ll talk about what you’re doing in a moment as well. But I want to go back to the covid days, right? So six years after your stroke, I would imagine recovery is going forward. Everything’s sort of tracking along, and you’re overcoming all your obstacles. You’re getting stronger and physically fitter and healthier as much as you can so how does covid get in the way of your recovery? Because when I got to covid, I was like, you two, two years extra of recovery, by the way.

Bill Gasiamis 36:36
But when I got to covid, it was like, in Melbourne, we had the long lockdowns and all that kind of stuff. And I took it as a time. Oh, well, it was annoying, frustrating, all that kind of stuff. But I’ll occupy myself in another way. And I didn’t feel like I was missing out on the physical part or the other therapies. Do you know what I mean? Like I had moved on from that stage of it? What happened with you?

Kevin Nakawatase 37:16
So prior to I was working with train different trainers. So I hired private trainers. I went to the gym for the first time. I signed up for a gym for the first time in my life, 56 almost 60 years old, I finally signed up for a gym. Kevin’s on a gym guy, he liked I, you know, he’ll do his exercises on the ice and all that. And I signed up for the gym. And during the time of covid, I wasn’t allowed in the gym where, you know, everyone was banned from going in.

Kevin Nakawatase 37:45
That kind of put a damper on the next part of my recovery, because I, as you said, like a plateau, and I was getting into walking better. I was working with a treadmill. I had a trainer that I worked with. Had two or three different trainers that I was working with. My one left, they went to another one of them, and it was kind of sucked, but it was actually that time too that I, you know, my trainers are saying, Look, you can’t go out. You’re going to have to do a lot in-house.

Stroke Recovery During COVID

Kevin Nakawatase 38:14
And not that I wasn’t before. I bought a yoga mat, I got weights, I got bands, I got all these things, so I started doing in house, and I quit the gym like I got rid of my membership after the covid was over, because it just felt the money wasn’t needed. The only thing that they had there that might have helped me was the treadmill, because my gait was so off, I wanted to keep working on it.

Kevin Nakawatase 38:39
But now covid Didn’t have the big, big impact, but I’ve met a lot of people that got it during covid, and I’m telling you, man, I have a friend still in the hospital right now, he got it during covid, and his recovery has been so slow because he didn’t get any recovery during covid, and for me, it’s just watching him wilt away as, you know, with no help. And he’s so depressed his mental health is, you know, through the roof because of all this. And covid just didn’t help people in that normal, you know, hopefully would have better recovery.

Kevin Nakawatase 39:16
And I am. I thank God that you know, like you and I, we didn’t have it during I don’t know what would have happened. I honestly try to believe that it wasn’t going to impact me to a level, that I’m still going to be the strong guy and work out and do something. But I don’t know. I can’t, you know, I’m thank God I don’t have to figure that part out. But I just can’t imagine anyone having a having a stroke from night 2019 to now. Like, how devastating the whole process has been.

Bill Gasiamis 39:50
Yeah, even worse than you normally have to deal with, like, you’d have to deal with all the stroke stuff, and then all of the non, non access. Services, and then all of the difficulty with people coming to see you, and all that type of it was just it would have been difficult for a lot of people, way more difficult than it needed to be, yeah, but absolutely, what’s interesting is you’re still doing all the recovery stuff.

Bill Gasiamis 40:15
Six years later, you know, you’re still at the gym, you’re still going for, you know, personal bests, you’re still trying to overcome. You’re still trying to get fitter and stronger. Your your gait is still on your mind. You need to work it out. You need to fix things more. That’s, the interesting part, to see, that even six years later, you’re still going for improvement.

Kevin Nakawatase 40:40
Yeah, I think it’s one of the things that I think if I could, you know, if you really could stand up in front of stroke recovery and caregivers, that’s the message is, you can’t give up, no matter, we’re going to be recovering for life. That’s just the whole thing. It’s this is not like short, you know, when you break your leg, like I said, before it might take three months do the rehab get recovered and you’re back out playing hockey again, or whatever sport you want to play.

Kevin Nakawatase 41:07
For us, it’s always going to be, you know, you’re worried about having a secondary stroke. And then secondly, you know your body, you don’t know what it’s going to do, if it’s going to break down, if, if you keep working out, is it going to be preventive? Nobody knows. There’s no real solution to it. So you gotta hope that all the hard work you put in is going to be worth all the time and effort that you’ve lost to make yourself better as you move forward.

Kevin Nakawatase 41:35
And that’s I think, you know, that’s my only message, is, that’s it. You just want to keep pushing yourself to get better, stay stronger. I think the only the positives I got out of the stroke. I mean, there’s a lot of positives for my body wise, I had two torn meniscus in my knees, and with all the work I’ve been doing on walking and weights and stuff on my legs, my meniscus don’t bother me anymore, but they’re still torn, but I’ll deal with that down the road, you know, because you can get arthritic. But it’s kind of a weird thing that something like that has changed through the fact that I had to work out and do all these exercises.

Kevin Nakawatase 41:35
Yeah, you improved it. That’s awesome. You’re very matter of fact, right now, you’re very logical. But did you have some tough times emotionally and mentally at all?

Bill Gasiamis 42:22
I don’t. Did I have mental health problems? I don’t know, I’m not trying to brag about it.

Bill Gasiamis 42:39
That’s alright, it’s not essential.

Kevin Nakawatase 42:43
I know. I don’t want to sound like that. You know, I’m a tough guy and all that. I think internally, I had my moment. My defining moment was this Christmas Eve. Every Christmas Eve that comes by, every the last thing, Christmas Eve and Christmas have come by, you know, I thank God that I’m not in bed, and things are good. And I thank God for all the work I put in 10 years ago to now has paid off for me being, you know, normal.

Kevin Nakawatase 43:14
And when I say normal, I don’t know about you and your friends and your family, if they treat you like normal, like you never had a stroke before people see you and say, Hey, Bill, you you had a stroke. Like you, come on. No, there’s no way in hell, right? When you get those kind of things, because people have seen people with strokes. And all the commercials that are out there on the television, you know, globally, aren’t pretty. We’re, you know, it’s not a pretty thing.

Kevin Nakawatase 43:38
So I take it is a tribute that people don’t come up to me and say, well, what happened to you? You know, if they ask, Oh, sure, I’ll tell the story. I’m not ashamed of what’s happened. It’s happened, but I tried to put some of it behind me, and hence why I didn’t get really involved in the community earlier until now.

Kevin Nakawatase 43:56
Because now I feel the story needs to be told how to to keep pushing, because I see so many people having, you know, issues, just trying to recover, mental health obviously, we talked about covid. Since covid has become a very big, big thing. I mean, it was there before, but we really hear about it now, because being alone can really cause a lot of depression, sadness and there are people that you know haven’t had the support to recover, like me, and you have probably.

Bill Gasiamis 44:32
Yeah, absolutely, The spectrum is wide, right? So everyone, not everyone, falls in the same part of the spectrum, and it gets different, hard, differently for everybody. So that brings me to the work that you’re doing now, so the community that you’re talking about, and the support groups, etc. So tell me what you’ve set up in Canada. And how people access it, who accesses it, and what you guys do?

Advocacy and Community Involvement

Kevin Nakawatase 45:05
So right now, what had happened last year is that I met a girl in New York. We partnered to do couple of American events for stroke, because she had a lot of connections, so I wanted to build off of that we have since kind of parted. She’s now kind of dealing with her mom, and that’s fine. I’m, you know, she’s still doing it. I support her immensely. I think it, you know, I think it’s great that we’re doing it.

Kevin Nakawatase 45:27
Well, I focus more on Canada. The second part of it is, I want to run the events again, but now I want to get the health care people involved. I want to get insurance government. Because I really don’t think that community, all these people, understand what we’re going through, the cost associated all these things. I think there needs to be a different, a better definition.

Kevin Nakawatase 45:49
When I hear people go three months and they know they’re going to get cut off from their, financing, and needs to be they need to understand, but there’s not a timeline in recovery. Recovery recovery is different. You and I have taken different timelines, but they all think it’s three months. It’s like, okay, that’s not right. So the events are going to be I’m trying to get these started in Canada.

Kevin Nakawatase 46:12
The hard part is all the medical companies that need to get out in the forefront to, you know, the products that they don’t have the money. And this is where I’m trying to find entrepreneurs, some kind of rich person that’s going to support and put the money in. That’s still my angle I’m trying to work on. So I’m trying to do these events to bring everybody together so we can talk about and discuss how we get better.

Kevin Nakawatase 46:37
My whole objective is not just in Canada. I want to do it globally. You know, talk to people in Australia, do it there. Do it in Asia, do it in Europe and and just make it something. I mean, there’s lot of stroke events, yeah, but it’s all on neurology, and it’s all for doctors, the stroke people and caregivers need just as much information to do better. I wrote a book. I’m just trying to get it published. I’m working. I’m trying to get it published.

Kevin Nakawatase 47:07
It’s, it’s called The Stroke Road Map, and that’s more for caregivers and what you need to do, what you need to you know, I don’t know who your support was when it happened to you, but the person who supported you has no idea what’s up. This is not like, and there’s no guidebooks out there. I mean, you get, you go online and read all the stuff, but I put a whole kind of package together from things like, you know, getting insurance, talking to doctors, what’s the plan?

Kevin Nakawatase 47:35
What’s the future going to be like? What are you going to need? What is as friends? What should you do? What shouldn’t you do? You know, because I had a lot of people call me and their friends had strokes, they go, what do we do? And I said, Well, here’s what you should do, and here’s what we want. Because we don’t want, you know, we don’t want empathy and sympathy. That’s it. Well, I didn’t, and I can’t speak for you, yeah, but what I want is support.

Kevin Nakawatase 48:00
And you know, if you need something, sure, you know, we’ll take that support. But try to help us be better or not, try to help us, baby us. I don’t want to be baby right? And that was the whole thing. So that’s part of the whole package I’ve done. And the other thing I just came back from Germany in November, and bear is now doing a look at secondary stroke, and so I’m on the campaign of that with them.

Kevin Nakawatase 48:26
They filmed my wife and myself. They took six of us from Europe and North America, two from North America, and we told our stories, just like I’m doing with you today. And they filmed it. And bears running campaigns now on secondary stroke, it’s noted too, is the campaign. So the whole idea is, how do we prevent it? And so I continue to work with them.

Kevin Nakawatase 48:50
Now we’re doing more segments, and they’re, they soft launched it just in May, and they’re going to fully launch it in October in Spain, and then North America is going to get launched next February at the Heart and Stroke. So that’s been another part of this stuff. And I’m also doing support groups. I’m actually jumping on one after we speak later, and that’s been with the March of Dimes in Canada.

Kevin Nakawatase 49:17
And it’s been quite how do I say it? It’s, it’s been a learning experience, not for me, but learning about others and what they’ve gone through. You and I, you know, you seem like me. We’ve gotten through it, you know, we’ve we’ve done well, and we’ve kind of grown with it. You know, they’re sure we saw our mental health issues, but not like some of the other people I met. It is like, I feel like just jumping through the computer, go sit down with them and say, Look, I know this is rough, but you can get through this.

Kevin Nakawatase 49:57
And you know, being a cheerleader is great. But then. And I get sometimes when people see you, and I don’t know if you get this, but you’ve recovered quite well, as I can see. And there are others you’ve met that haven’t quite recovered. And I’m sometimes wondering if people are thinking, why is he so good, and why am I like.

Sharing Different Versions of Stroke

Bill Gasiamis 50:15
A lot of stroke survivors reach out to me to be on the podcast like you, you know, nearly 360 episodes, and that means a lot of different versions of recovery or not recovery. And that’s the challenge. It’s like, I can’t represent everybody, so what I try and do is bring a whole bunch of diverse versions of stroke on my conversations, so that I can then at least close the gap between my awareness of what it’s like and the reality, because my awareness my version, is not the reality for everybody.

Bill Gasiamis 50:53
So just try and close the gap, and then make those stories available. If I get to 1000 podcast episodes, I think I will have achieved that. I’ll have, you know, very broad range of different experiences, and then at least I can connect all the different people who need different versions of stroke together. Yeah, because my version might not resonate with somebody, and that person might not resonate with me and whatever. So I have the same concern.

Bill Gasiamis 51:24
The good thing about is my concern and your concern is, even though we’re doing, you know, like our version of it, I think it’s important without it. I think there’s going to be more of a gap, and it’s necessary for us to push on, push forward in the only way we know how our version of it and yeah, just accept other people as being, just accept other people as being in a different part of their journey.

Bill Gasiamis 51:57
And that if one word that we say in our conversation helps just about mindset, or just about what plateau means, or just about what exercise, how much exercise is necessary, like just one word, I’m done, I’m happy. They don’t have to resonate with me in any other way. Just one word. I’ll take that to the bank. You know, I don’t mind at all.

Kevin Nakawatase 52:23
I agree. I totally agree with you saying I think, I don’t think twice about it, and I don’t shy away from, you know, telling people how I’ve done it. That’s why I keep saying to people, I’m not here. I’ve worked hard to get where I am. This is not like some when some fairy dust came on top of you and I, and we got the the longer end of the stick, not at all. I know, you know, I see stroke survivors, and I can tell how people have done and how well they’re doing based on the conversation and how they how they look.

Kevin Nakawatase 52:56
Because I if my favorite lines always just gotta keep pushing yourself, you know, it’s the only way you’re going to get better and you get stronger. And, you know, some people take it on, and then some people can’t. And I get it because cognitively, sometimes it’s not the easiest thing. And and I think like you, like me, we both didn’t get a lot of cognitive.

Kevin Nakawatase 53:19
I had no cognitive and based on my conversation with you right now, and we just met for the first time, I would think if you had any you’ve gotten through it, or you had very little at all, and you were able to recover to a point to make yourself better, because obviously thinking and a lot of the energy from the mind has to tell the body what to do.

Bill Gasiamis 53:42
eah, I had cognitive issues. They were short-term over probably six months. Couldn’t remember who saw me. Still today, people tell me I came and saw you, and I don’t remember that they did at all.

Kevin Nakawatase 53:57
Long term memory is still up and down.

Bill Gasiamis 54:00
Just in that period of time, yeah, in that six month period of time, I couldn’t type an email, I couldn’t read a book, I couldn’t start and finish a sentence. I would forget mid sentence, what I was talking about, what the topic was, all all these things that happened for a short amount of time. I was in a wheelchair for a short amount of time, probably about six weeks all up, I had four weeks, you know?

Bill Gasiamis 54:24
So I’ve had, I have some spasticity. Everything that stroke survivors say has happened to them has happened to me, but in other areas, like in a small, short version of that. So I have a taste, a glimpse of it, but I don’t have the full life experience of it, you know, it’s, yeah, I’m not living with a wheelchair or anything like that.

Kevin Nakawatase 54:44
So were you, were you dominant side or non dominant? Non dominant? Yeah, yeah, me too. So we’re you and I are very lucky, because I keep telling people, is there, if it’s your dominant side, you actually have to learn it double time, yeah, because you’re teaching your bad hand. How to be good, and you have to teach your good hand how to be better, and that’s double it’s really hard.

Bill Gasiamis 55:07
That’s heaps of work, right? So I totally get it, and I think that it doesn’t matter how you step up with what you’re what. And I’m talking to stroke survivors, watching and listening now, it doesn’t matter how you step up. But what I love is stroke survivors who want to help other. Stroke survivors often reach out to me and say, I just want to be on your podcast if I share my story, and that helps somebody.

Bill Gasiamis 55:33
Job done, and that’s it. See, like helping other people can be just as simple as that. Just share one story that goes out to a global audience. Somebody gets a word out of that, or one idea out of that, and it’s job done. This is what I mean about everyone can support each other in their own unique way with the resources they have and with the amount of time they want to allocate it, allocate to it. Somebody allocates one hour in the next 10 years to helping stroke survivors. Man, that is awesome. I mean, honestly, that’s all we need. We don’t need, yeah, more than that.

Kevin Nakawatase 56:13
If the message gets out of one person hears it and it helps them, that’s all it takes. It’s that one person.

Bill Gasiamis 56:21
I love what you’re doing. I love how you got Bayer, the pharmaceutical company, involved. Like, that’s brilliant.

Kevin Nakawatase 56:29
Well, they came chasing me. I didn’t go to them, though I would have loved to, when I was looking for sponsors. Yes, I reached out to them in Canada. But, yeah, it’s been more and more I’ve been, you know, on my website and everything. I’ve got everything up there uploaded, anything they talk about I like in LinkedIn and and Facebook and stuff.

Kevin Nakawatase 56:50
The whole idealism too is, is that there’s so many people. For me, the message is so many companies, so many people that are getting involved in stroke, myself included, and I’m glad that people are and I just hope that people understand you’re not alone. This is a community. It’s not one that people want to sign up for. Let’s put it that way.

Kevin Nakawatase 57:15
This is not like everyone’s going to want to come to this group. But at the same time, the groups out there, and there are so many people that I’ve talked to that, you know, they’ve all got advice, and that’s good. I think the advice is important. What you do with is up to you. And you know, your journey is going to be different than mine, Bill and and then different from the other people.

Kevin Nakawatase 57:35
But are all we all have one common goal, and that’s to get as healthy as possible, to what we are. Don’t expect yourself to be back to, you know, like I said, the broken leg theory, if it’s broken, you’re never going to be 100 that’s just the way it is. But don’t ever give up. You always can strive for 100, and the closer you get, the better. That’s all you want. If you hit the 100, good for you. I’m not trying to downplay not to be I just think you gotta have the acceptance of small things may not just always work perfectly for you.

Kevin Nakawatase 58:08
But I’m only one person. There’s so many others I’ve seen, prime example in the NHL, Chris Letang plays for Pittsburgh Penguins. He’s had two strokes. He’s still playing in NHL now, what he goes through, I have no idea. You know, there are a lot of other people have had strokes, you know, entertainers and people like that, and they’re still living their lives. And, you know, that’s why.

Bill Gasiamis 58:37
Where would people go if they wanted to connect with you might be Canadian listeners here going on. I need to connect.

Kevin Nakawatase 58:44
Go to my website. It’s K as in, Kevin N as in, Nancy S and Sam C as in, Charlie T as in Tom .com so knsct.com, my, all my details in there, all my events that I’ve done are in there, my bear videos in there, I have actually did another podcast with a gentleman from Oregon I met in LA, and he’s got, it’s called stroke warriors, stroke warrior radio, and he’s doing exactly like you, but in the American version, yeah.

Kevin Nakawatase 59:17
So I’ve been on that one as well. And, you know, good on you guys for, you know, putting this together. I’m not tech savvy, so it’s, you know, I get my niece doing all my work for me. My two nieces are doing my website, my prints and everything. All I do is just feed it out. So, you know, I appreciate the family. But this is, you know, this is sort of thing that, you know, it’s my expertise in terms of what I’ve done for work and, you know, reaching out to people. I just want to continue to help the community.

Kevin Nakawatase 59:46
Everyone goes, you know, what’s your goal out of this? I said, you know, probably like you, if you win the Nobel Peace Prize, it ain’t what I want the Nobel Peace Prize, but it does mean that we’ve done something good, and people recognize. You globally for doing something well. And that’s, you know, the whole idea is to make people understand that stroke survivors need tension and need to get fixed. Because I always, you know, I don’t like comparing apples to oranges heart attack, you know, they go and they can fix it. You get a bypass pretty much normal. They can’t, can’t go in our head and start fixing and playing with it. We have to live with this disability and things like that. So I said, you know, we have to work harder to get to get to some normality. So

Bill Gasiamis 1:00:35
I agree. If anyone wants to nominate me for the Nobel Peace Prize or something like that. Please do.

Kevin Nakawatase 1:00:42
I will. Yeah.

Bill Gasiamis 1:00:44
If I get it, if I get it means that we bring to light more of these issues. That’s all the the only reason I want to get it, my ego’s got nothing to do with it, but if you want to give me the Nobel Peace Prize or any other prize that allows me to get in front of 1000s of people and give my acceptance speech or anything like that, and talk about stroke, start nominating me. Just do it everywhere.

Kevin Nakawatase 1:01:09
Yep, I agree. I totally agree. I’ll be the first. I’ll be first in line with the nomination forms come up. I know you laugh when I said that, but when I was saying it and you’re going, but I tell my friends the same thing, and see they go, Noble Peace. What’s the biggest globally? It’s the biggest award worldwide. I mean, we can’t win an Oscar. You know, that’s, that’s total different thing.

Bill Gasiamis 1:01:30
I’m going to have the links in the show notes, so anyone wants to reach out, they can. And I really appreciate your time. Kevin, great to meet you.

Kevin Nakawatase 1:01:42
I appreciate it. I’d love to get together. And if you’re ever thinking of doing an event in Australia, I’d come down like I absolutely would love to help you guys out out in Australia. And vice versa on, once I get stuff here, I’ll invite you down. And for me, it’s just a matter of Bill, just trying to pass the message on, trying to people, make people understand, you know, we’re going through a disability, but it can be worked out. And you know, it’s, it’s your life’s not over because of something like this. Yes, you’re going to have to work harder, smarter, but those are things we have to work on in real life, whether we’re sick or not?

Bill Gasiamis 1:02:21
Yeah, 100% man. Thank you so much for joining me and being on the podcast.

Kevin Nakawatase 1:02:25
Thank you for having me, Bill and wish you guys a happy winter while you’re you’re down there. We’re enjoying the heat right now, but yeah, let’s stay in touch, and we’ll, we’ll keep connecting and trying to make this world a better place for stroke survivors.

Bill Gasiamis 1:02:40
Before we wrap up another thank you to Banksia Tech for supporting this episode and making stroke rehab tools like the hands and rehab glove accessible to more survivors. If hand movement is part of your recovery, this glove might help visit banksiatech.com.au, or use the links in the show notes and in the YouTube description.

Bill Gasiamis 1:03:02
Now, let’s reflect, Kevin didn’t just experience a stroke with no fast signs. He didn’t just survive paralysis and months of uncertainty. He built a recovery lifestyle. He worked past a plateau. He kept training. Years down the track, he stepped into advocacy, partnering on awareness campaigns, hosting survivor events and joining support groups, because for Kevin, recovery isn’t a deadline, it’s a way of living. If this episode resonated with you and you’d like to help me reach 1000 stroke survivor interviews, please consider supporting the podcast on Patreon.

Bill Gasiamis 1:03:38
Your support covers, editing, publishing and sharing real recovery stories like Kevin’s. And if you want more stories of post stroke growth, check out my book, The Unexpected Way The Stroke Became The Best Thing That Happened, written by a survivor for survivors. Links are in the show notes and Youtube description until next time. Keep going, keep showing up and remember, recovery is for life.

Intro 1:04:03
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.

Intro 1:04:20
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.

Intro 1:04:37
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content.

Intro 1:05:05
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:05:22
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there.

The post The Subtle Stroke Signs Kevin Almost Ignored appeared first on Recovery After Stroke.

Internal Carotid Artery Dissection – How Lara Found Purpose After Stroke

 

A family ski day. A split-second movement. And life as she knew it would never be the same.

Lara Kaufman was a 41-year-old mother of three and a former chartered accountant living a full, busy life. On a ski hill just outside Toronto, she swung her arm with a ski pole to regain balance, and accidentally struck her neck with enough force to cause an internal carotid artery dissection.

It wasn’t long before she collapsed at the top of the hill, right eye blurry, dizzy, and disoriented. Paramedics initially didn’t recognize her symptoms as stroke. But by the time Lara reached a hospital that could scan her brain, she had suffered a massive ischemic stroke. She would soon need a craniotomy to relieve swelling. Her recovery had just begun.

“I was completely paralyzed on the left side of my body. My brain didn’t even recognize the left side existed.”

From ICU to Insight

For weeks, Lara couldn’t walk, go to the bathroom on her own, or sit up without falling over. The left side of her body didn’t respond. Her midline had shifted. She couldn’t even tolerate having her photo taken because her face had swollen shut after surgery.

But through months of rehab, she began to reclaim movement. “I felt like recovery was slow. But looking back now, 15 years later, it was actually pretty fast.”

“I’ve learned to do most things with one hand. I’ve got use of my right side, and I walk up to 6 kilometers. I’m independent again.”

Cryoneurolysis: A Game-Changing Treatment

For years, Lara battled painful post-stroke spasticity. Botox injections offered minimal relief. But in 2023, she traveled to Victoria, BC to undergo cryoneurolysis a novel treatment developed by Dr. Paul Winston.

This technique involves inserting a -88°C needle into spastic muscles to temporarily disrupt the nerve signal, giving stroke survivors a 6 to 9-month window to rehabilitate without stiffness. The results for Lara were immediate.

“After 14 years of no movement in my left arm, I can now do a bicep curl. That was impossible before.”

Redefining Success After Stroke

In the early days, Lara thought she’d be “back to normal” in two years. But normal changed.

She began volunteering with March of Dimes Canada, mentoring stroke survivors in rehab and later co-facilitating support groups. Every February 13th, the anniversary of her stroke, her family buys a cake and chooses one word to reflect her journey that year. “Accomplishment.” “Gratitude.” “Purpose.”

“If I could be successful in my recovery, I believed others could too. That’s why I keep sharing.”

Stroke Recovery That Keeps Evolving

Lara’s story isn’t one of overnight transformation — it’s one of dedication, community, and purpose.

Even 15 years post-stroke, she continues daily rehab, refuses to give up on using her left arm, and serves as an example of post-traumatic growth. Her recovery didn’t stop at walking again. It evolved into mentoring, speaking, and giving others hope.

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Disclaimer:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.

Lara Kaufman’s Internal Carotid Artery Dissection

A ski accident led to a stroke, but what followed was resilience, reinvention, and a surprising new purpose in life.

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Highlights:

00:00 Lara Kaufman’s Introduction and Background
03:56 Medical Journey and Initial Treatment
17:34 Rehabilitation and Early Recovery
19:08 Discovery of Purpose and Helping Others
22:27 Advancements in Stroke Recovery and Technology
25:10 Challenges and Setbacks in Recovery
32:04 Lara Kaufman’s Journey and Tradition
1:17:20 Reflecting on Lara’s Achievements

Transcript:

Internal Carotid Artery Dissection – Lara Kaufman’s Introduction and Background

Bill Gasiamis 0:00
Before we dive in. A big thank you to Banksia Tech for supporting this episode, proud distributors of the Hanson rehab glove by Syrebo. It’s designed to help the stroke survivor improve hand function at home, whether you’re early in recovery or years into it, you’ll hear more about it later in this episode.

Bill Gasiamis 0:20
Links are in the YouTube description and at recoveryafterstroke.com. Now what if a split second movement during a ski trip was all it took to change everything? That’s what happened to Lara Kaufman, a 41 year old mother of three from Canada, one moment she was gliding off a chairlift the next a jolt to her neck caused an internal carotid artery dissection and a massive ischemic stroke.

Bill Gasiamis 0:48
Within hours, Lara was fighting for her life, complete left side paralysis, a craniotomy, months in hospital, years of uncertainty. But she didn’t stop at survival. She kept going long after the statistics said she should have plateaued.

Bill Gasiamis 1:04
If you’ve ever wondered whether recovery is still possible years down the track, if you’ve struggled with spasticity or been told you’ll never by a doctor, if you’re searching for purpose beyond the pain, this episode is for you, let’s dive in. Lara Kaufman, welcome to the podcast. \

Lara Kaufman 1:23
Thank you.

Bill Gasiamis 1:23
Thank you for being here. Tell me a little bit about what life was like before stroke.

Lara Kaufman 1:32
Before stroke, I have three children, I have twin daughters and a son. My twin daughters were 10 and a half. My son was eight and a half. I was a full time working super mom. I’m a chartered accountant, so I was working, and actually at the time I wasn’t in public practice anymore. I was working with my husband in the pet food business and working quite long hours.

Lara Kaufman 2:05
And then on February 13, 2010, we took a trip to Collingwood, Ontario, which is about two hours outside of Toronto, for a ski day. And we after a few runs up and down the hill, we I got off the chair lift, and I was walking toward the descent, and it’s flat, and I don’t know if you ski, but when you walk on a flat surface, you walk with your skis out like this, and you use your poles.

Bill Gasiamis 2:38
You drag yourself along with the poles.

Lara Kaufman 2:42
And the basket of my pole got stuck under my right ski. Instead of going like this, to yank to remove it the basket from the pole, I went like this, really hard, really fast, with the blunt end and punched myself in my carotid artery. That caused a carotid artery dissection, which then caused a blood clot, which then caused a massive stroke at the top of the hill.

Lara Kaufman 3:06
And all I know is my right eye was blurry. I was dizzy, and I felt okay. I don’t think I should ski down this hill. And my husband was on the chairlift behind me, so when he saw me, he said I was foaming at the mouth, and eventually I collapsed onto my knees, and, you know, I said, I think you should ski down the hill. And goes, okay, it’s okay, you know.

Lara Kaufman 3:26
And he kept saying, I kept hearing, stay with me. Stay with me. The kids were screaming. And, you know, from your children’s cries, you know, there’s a hungry cry, they’re they, they’re older, but there’s a hungry cry that there’s a scared cry, you know, and a tired cry. This was a scared cry, and something I’d never heard before. And I didn’t pass out. I was very awake, but not alert, just awake.

Medical Journey and Initial Internal Carotid Artery Dissection Treatment

Lara Kaufman 3:50
And then eventually, my husband called for speed patrol, who then came, and they called 911, and the paramedics came, they said they didn’t see stroke right away, for some reason, I don’t know why, but they did take me to the hospital and then, but that that hospital, because it’s a small town, for whatever reason, there was no CAT scan machine there.

Lara Kaufman 4:12
They have one now, but time they didn’t. And then they took me to another hospital, and there they diagnosed with a carotid artery dissection, and I need a neurosurgeon. There wasn’t one there, so they might, fortunately, my aunt’s brother is one. It was one of the top neurosurgers in the country, and so my dad called him. He’s also a friend of my father.

Lara Kaufman 4:38
So my father called him, told him what had transpired, and he say, said they want to take her to Toronto, which is where I live, and large city, and they back in the ambulance. I went because apparently there were two snowflakes in the air, so the helicopters couldn’t. Had to wait a half an hour to fly. And you know, as you know, with stroke, it’s time.

Lara Kaufman 5:01
So they back in the ambulance, another hour back to Toronto. When we got to the hospital, my husband said they were like 40 people waiting in the bay for me, he’s he’s thinking, what great service you know, not realizing you only get that service when there’s something you know terribly wrong. They had at this point, he hadn’t heard the word stroke or brain damage, so he didn’t know what was what.

Lara Kaufman 5:26
And they go into the hospital, and the chaplains pulling my husband aside, and my husband’s like, No, I’m going with my wife. And he still had his ski boots on because he didn’t think. He figured we’d go get checked out and then go back to the ski hill, and then the the doctor came over. My parents met, met my husband and I there, and they took my parents and my husband to the quiet room.

Lara Kaufman 5:53
This is where they give you, you know, the bad news, saying that I had a stroke and there was significant brain damage, and the next 48 hours would be critical. Wow. And this point, I was oblivious to everything going on.

Bill Gasiamis 6:11
Did you did you have a realization at the time that you injured yourself? Did you connect?

Lara Kaufman 6:17
I knew something was wrong. I didn’t know what. I didn’t know stroke. I just knew something was wrong. I felt dizzy. I visited my right eye. Was it? Oh no, I did something very bad. Something’s wrong. I didn’t know what, I didn’t know how serious. I just knew something was wrong, right? And then I shouldn’t ski down the hill, because I don’t think it’s safe. That’s all I could think about.

Bill Gasiamis 6:40
Yeah, so you made, but I got a couple of decisions that were critical to making the outcome even better than what it was that was a really good result from what happened you you hit yourself with the blunt part of the handle.

Lara Kaufman 6:58
Yeah and I went like this, really hard, but it was like this, like jerked, yeah, you know, because I was pulling it up instead of going like this one, like this, really hard, really fast, and it was a puff. I’d hit my chin. Maybe I would have fractured my chin, yeah, and had surgery, and it would have been the end of it, but because I happened to hit my carotid artery, yeah, you know the then the the effects of that, you know, if I’d hadn’t hit so hard, maybe I would have bruised it. There was no mark on my neck, there was nothing. There was no cut, there was no mark, nothing.

Bill Gasiamis 7:33
So, from the injury, from the injury to hospital, how long passed? How much time?

Lara Kaufman 7:38
So injury to the first hospital, I’m probably going to say, about half an hour, and then probably it was probably about three or four after four, four hours time I got to the hospital in in Toronto. But apparently, because the it was a bunch of bund forest trauma, I wouldn’t have qualified for the TPA drug. No, no, because my husband did inquire about that. Yeah, um, if, if they did, if it did, if they could have taken the helicopter, would I? Could I have they? Could they have given me this drug? And they said, No, I wouldn’t. Didn’t qualify.

Bill Gasiamis 8:18
Yeah, time, the amount of the time had elapsed as well. So how long before you came kind of back into the land of the living? Were you aware? Was there a moment where you went from being kind of oblivious to then into awareness?

Lara Kaufman 8:33
Yeah. So some later, sometime later, that day they I when I was told that I had a stroke. Now, my grandfather, who I never met, who I’m named after, in 1964 I think it was or 65 for I was born, had a stroke. He had heart disease, and there was no blood thinners back then, and so I thought, I didn’t know this at the time. I thought my grandfather died of a stroke. In fact, he survived the stroke, but he died a year and a half later of a heart attack.

Lara Kaufman 9:04
So my first, my thinking, because I didn’t know that he, I thought he, I said, I, you know, I don’t want to die. I don’t want to die. I don’t want to die. That’s, you know, I have to be around for my kids like I don’t want to die. That’s all I could think about, is I don’t want to die. And I was scared, okay, it was. And you know, my husband was saying, You’re not going to die, you’re going to be okay, you’re going to be okay, even though he didn’t know that or not. He just he lied.

Bill Gasiamis 9:32
A little white lie. That’s a good lie.

Lara Kaufman 9:35
Yeah. And then I probably, I just remember getting they kept giving me CAT scans, like every office, every four hours, every eight hours, and the bed was very cold, and I was freezing. And so those are the things. It was the little things that I remember, not so much the big picture, because I was not told about the big picture.

Lara Kaufman 10:00
And then, and then they were monitoring me to see if I needed a craniotomy because my brain was swelling. Uh, okay. Had us the surgery four days later, and I remember I had to sign something to to to allow me to to authorize the surgery. My husband had to sign too, because they knew that I wasn’t up to it wasn’t 100% there.

Bill Gasiamis 10:25
Yeah. So you had a craniotomy, yeah? How much of the skull did they remove?

Lara Kaufman 10:32
Like the whole scar, this big. And they took it out for so February, February, 17, 18th, whatever that day was, they took it out and they put it back at the end of April.

Bill Gasiamis 10:47
Now, if you’re working on hand recovery after stroke, there’s a tool worth knowing about, the Hanson glove by Syrebo, available through Banksia Tech. It’s safe to use at home even years after stroke, with six therapy modes, including stretch, grasp and release and a patented mirror function, it helps retrain your brain and hand together.

Bill Gasiamis 11:12
Banksia Tech ships internationally, and it qualifies as low cost assistive technology. Visit Banksiatech.com.au, or check out the links in the YouTube description and show notes are recoveryafterstroke.com to learn more. Now, let’s take a moment. You’ve just heard Lara describe the surreal moment she hit her carotid artery and how within hours, her world collapsed into chaos, paralysis and silence.

Bill Gasiamis 11:39
She lost her ability to walk, to sit, to move, and yet she found a way forward. If you’re in that in between place, not where you were, not where you want to be, just know this, the plateau is not the end. Healing does not follow a schedule. Hope is still on the table. Let’s get back to Lara and what happened when she started helping others, February, March, April, so about three months in total.

Lara Kaufman 12:06
Yeah. They kept it out, and then I had to wear a hockey helmet, not in the hospital, but when I went to the rehab hospital, I had to wear a hockey helmet, because the only thing separating my brain from the outside world was my skin. So if I hit it, if I fell and hit my head, it’s game over.

Bill Gasiamis 12:23
How do you deal with that? So I a few months earlier, you were running around the business the kids being usual, normal, healthy person. You go skiing, have an you get an injury, you wake up in hospital. You’ve had a stroke, now your brain’s swelling, and then one day, you wake up after a craniotomy with half of your skull missing, parked in a box somewhere in a refrigerator.

Lara Kaufman 12:53
I don’t think I really understood what was going on. It’s like you get this information. You’re like, okay, okay, you know, like, you just, you just kind of go with it, and you don’t really understand the ramifications of what’s really going on, you know, I thought this was February. We were supposed to go to Florida in March, and I thought I was going, you know, I didn’t. And my husband says, you know, you’re not going to Florida. Go, yeah, here we are going, don’t worry, it’s okay. We’ll go, you know.

Bill Gasiamis 13:23
Delusions was huge. That’s okay, I understand that as well. Now, did you catch yourself in the mirror? Did you have a look and go, what on earth is going on here? What am I looking at here?

Lara Kaufman 13:37
No, I did not look. After the craniotomy, my eyes were swollen shut, like I could see cracks, and so I knew I there’s no way I look good, and because of that, I didn’t want anybody taking my picture. I regret it now, because I would love to see what I look like, then it would also help, you know, see how far I’ve come, even though I know I’ve come a long way. Yeah, I wish I had pictures from back then, but I I didn’t want anybody taking my picture, so.

Bill Gasiamis 14:04
Yeah, fair enough. And then what about the part of the surgery when they put it back? What is that like? What is that experience?

Lara Kaufman 14:14
I remember that more because I had been in rehab for six weeks, maybe longer. And so I, like, you know, in the there were little things like in the re in the rehab hospital, the nurses transfer you from wheelchair to bed, you know, and back. Whereas in the hospital, you in order to get to wheelchair, they gotta, they gotta lift you in this, I call it the elephant lift, you know, with the parachute.

Lara Kaufman 14:47
And then they bring you down, they put you, and you feel like you’re this, like this elephant in a zoo, being lifted up and putting it because the nurses aren’t trained to transfer you, which was such a simple thing. You. So there were and I was more aware when I was in the hospital the second time than I was the first time, much more aware of my surroundings, the people, the nurses, everything.

Bill Gasiamis 15:12
Sounds like the the healing of the brain had started to happen already. The swelling had gone down. Things started to come back online, and you gave you the opportunity to be more with it.

Lara Kaufman 15:23
Yeah, exactly. And I was, I mean, at least I feel I was.

Bill Gasiamis 15:29
You know that part where you forbid images, photos, that type of thing. Do you think it was part of the not having accepted what happened? Or was it actually just because of the way that you looked?

Lara Kaufman 15:47
I thought all this was temporary. I really thought this was all temporary, and this was a blip in this, you know, in the scheme of things, and that’s just not having a full grasp of what, really happened.

Bill Gasiamis 16:00
Just being ignorant about stroke, which is normal, at your age.

Lara Kaufman 16:04
Ignorant about stroke, ignorant about my situation, you know, the doctor said, you know, to you, you know, it’ll take you two years to recover. You’ll be back. They didn’t say back to normal. But when they said it’ll be about a two year recovery, in my mind, you know, in two years, I’ll be back to normal.

Bill Gasiamis 16:28
I know it’s, it’s an interesting statement, because everyone who’s been through stroke kind of has a moment like that. They have the back to normal moment, and then then they have the, there is no back to normal. And then that’s the moment as well, and that’s pretty dramatic, but, yeah, craniotomy tends to be a bit more dramatic, and therefore more recovery, more healing, more areas that have been impacted, interacted with, touched.

Bill Gasiamis 16:55
You know, there’s so much to comprehend, you know, for the body to comprehend and realign and readjust, not to mention the possibility that you’ve got deficits from the actual stroke. You know, the part of the injury which shut down your brain, some of your brain cells. So where is that? What type of injuries did you end up with after the stroke?

Rehabilitation and Early Recovery From The Internal Carotid Artery Dissection

Lara Kaufman 17:20
So when I had my stroke, I was completely paralyzed on the entire left side of my body. Couldn’t feel a thing, and my brain didn’t recognize the left side at all. So my midline, which used to be center, was now moved, you know, to the right side, and I couldn’t even sit in a wheelchair because I kept falling over because I had no trunk support at all.

Lara Kaufman 17:43
And I went from that to, you know, the recovery was, I felt was slow, you know, and nobody feels it’s fast, but in hindsight, was actually pretty quick, looking back now that it’s been 15 and a half years, you know, I can now walk five kilometers, maybe six at one time, and I’m fairly independent.

Lara Kaufman 18:15
My left arm is still partially paralyzed, so I don’t have a lot of use of it, but I’ve learned to do most things with my right hand, so I’ve just kind of made do with what I have, and I’ve always had a positive outlook on things. I really just believe that, you know, this was there’s a higher reason for all this. I read a book many, many years ago called why bad things happen to good people.

Lara Kaufman 18:43
And although I don’t remember the details of the book, I remember, you know the title, it’s in the title. You know that there’s, you know, why bad, but the good things come from it, you know? And so I said to my husband, there’s gotta be silver linings here. This is, this is so bad, there’s gotta be silver linings. And I kept looking. I was like this for the first two years, looking for where you know, where are they.

Discovery of Purpose and Helping Others

Lara Kaufman 19:06
And then someone told me, when you’re meant to find them, you will. And then I would say, about six months after that conversation, I was approached by March of Dimes Canada, which is a disability charity organization helping people with disability, empowering people with disabilities in Canada. And I got involved with them, with their they had a stroke program looking they were looking for stroke survivors to peer Council stroke survivors that were in the hospital.

Lara Kaufman 19:39
And my doctor thought I’d be a great person to do it. And I said, Okay, here’s my here’s my reason like here’s and I started doing I went to the rehab hospital every week for two hours from 2013 until 2020 till covid. And then started doing it online, having one. To one calls, and really helped me, you know, talk to people, meet people from all over with all walks of life, and listen to their stories. And it helped me in my journey as well.

Lara Kaufman 20:13
And I would go and I’d, you know, they were so thankful that I used to come home feeling very selfish for I’d get some such good feedback from it that I’m thinking of what I’m such a selfish, selfish person, because I’m getting the rewards, you know, when I know, in fact, it’s the opposite, and I’m helping them and but it’s just the way I really enjoyed it, and I still do it to this day. And you describe, whenever they ask me to do something, I I just don’t say no. So I’m now, now co facilitating a peer support group, a new pilot project.

Bill Gasiamis 20:46
Weird. Isn’t it like you’re describing me exactly. It’s exactly what happened to me, is I went to the Stroke Foundation. They put me in touch with stroke survivors. We started to share. And I feel a little bit more like understanding and, you know, empathy and support.

Bill Gasiamis 21:04
And then from there, I volunteered. So I started coaching, telling people about stroke, raising awareness in the community, what to what the signs are, what to do if you think somebody’s having a stroke, that kind of stuff. Amazing, awesome. And I was saying I was coming home going, Oh, this is really cool. I’m getting a lot of a lot out of this.

Bill Gasiamis 21:23
And then I thought, I need more than that. I need, I think I need to create a community online. All these seeds were planted by other people, by the way, the word, it wasn’t me that came up with them. And then I just found myself doing the podcast. And then, you know, being 30, 40, 50 episodes in and going, Oh, this is really cool. I’m getting so much out of this.

Bill Gasiamis 21:46
I didn’t know that the stroke survivors on the other end of the Zoom call were getting something out of it as well, which was just my naivety, you know. Just thought it’s a good thing I’m getting something out of it. Bonus. And then I started to really get excited when people started sharing that they were needing that episode, thank you for that episode, it’s great that I found this person, I connected with this person, I reached out to this doctor because of what you interviewed them about.

Advancements in Stroke Recovery and Technology

Bill Gasiamis 22:16
And that was mind blowing. And then it was around episode 40 when I said stroke was the best thing that happened to me. And that’s the thing is, how do you describe that to somebody who’s so early on that you have the opportunity to get there? It might. It’s not the best physical experience, health experience. It’s not that part that’s good. It’s what comes of it later.

Bill Gasiamis 22:39
And I was looking for a word to describe it. I didn’t know, how do you package all of those amazingness and then just say it in one sentence so somebody knows what the heck you’re on about, right? And I stumbled across the work of Richard Tedeschi and Lawrence Calhoun, two researchers in the United States that coined the term post traumatic growth.

Bill Gasiamis 23:03
And that’s me to a T, right? And my book is called The unexpected way that stroke became the best thing that happened. And in there are the 10 steps to get somebody to experience post traumatic growth. They’re the things that I did and all the things that the other people did that said that they had that stroke was the best thing that happened to them.

Bill Gasiamis 23:25
Do you know? It’s so weird, but that is the opportunity that arises and and just for the people listening and everyone know what Post Traumatic Growth means, it’s something that happens after a trauma. The trauma doesn’t have to be a stroke or death of a loved one, trauma is on a spectrum, and it’s different for everybody. So it doesn’t matter what the trauma is.

Bill Gasiamis 23:47
And basically, if you experience after that particular incident, spiritual development, a sense of new personal strength, you improve your relationships, a greater appreciation for life, and you have taken action of or you’ve seen new possibilities you’re experiencing post traumatic growth. That’s what I love it I love come after all of the trauma that you went through and, yeah, that’s what it’s about. It’s about and it comes. It came to me more than anything, after I did things for other people, stopped making about me and started making about other people.

Lara Kaufman 24:36
Yeah, and for me, like one of the first people that I went and I went to the hospital, one of the first patients that I had visited, she said to me, you know, I’ve read about stroke in a book, but I didn’t know what it looked like until you walked in the room, and I was, like, blown away. Like, wow. Like, the impact that I could have. You know, as as a mother, you just want to have an impact on your kids, right? I don’t think beyond that, but to have this kind of impact, like you’re doing as well, it’s quite remarkable.

Internal Carotid Artery Dissection Challenges and Setbacks in Recovery

Bill Gasiamis 25:06
It expands your horizons. You know, you go from your identity being I’m a father, I’m a husband, I’m a dad, I’m a I work, I’ve got a job, I’ve got I run a business, to something more than that. I don’t know what those other things are for other people, but for me, it’s somebody you know, who has a community, who helps people, who people help me, who on a connector, I can connect people from all over the world, like now, Stroke Foundation, call me, you know, ridiculously, almost every second day.

Bill Gasiamis 25:39
Can you do this? Can you help out with that? Can you, of course, like you, it’s a yes. So there is something, there is something about it where you don’t realize the benefits for the greater community and yourself, and therefore how you turn up at home, how your example, the example you’re setting for your kids, what happens after a diversity you go through a really tough time, but how can you behave, regardless of what your deficits are, what your problems are, how do you respond? And then you give them a a sense of if if you guys ever find yourself in a terrible situation, here’s one example of how you can tackle it.

Lara Kaufman 26:26
It’s exactly what. So in grade 12, one of my daughters, it was a little thing, but one of your daughters was having a difficult difficulty with her, one of her teachers, and her teacher, I don’t know, just, it’s just, there’s issues. And I said to her, you know, she’s I said, you can give up, or you can, or you can, you know, persevere.

Lara Kaufman 26:47
And I said, Look what I’ve done. You’ve seen me persevere. You know, you can persevere too. Because one thing that’s for sure, guaranteed that shit’s going to happen in life. You know, it happens to everybody in different forms. Sometimes it’s financial, sometimes it’s emotional, sometimes it’s, it’s, it’s, you know, family problems, like, but stuff’s going to happen everybody.

Lara Kaufman 27:13
I believe everybody gets hit with something. So it’s not what you can’t control. What you can control is how you react to those things that happen. Yeah, that’s the one thing we still have, is the control of how to how to respond to that.

Lara Kaufman 27:25
And so you can curl up in a ball and cry and live your life that way, and you know, and your community and friends are probably going to drift off because people don’t want to be, people aren’t don’t want to be around that. Or you can stand up straight, you know, and, you know, dust, you know, brush the dust off and get to work and do what you have to do and what you don’t have to go and volunteer. You don’t have to, just have to get yourself just get back up and and do what you gotta do.

Bill Gasiamis 27:59
Yeah. I think you have to learn, don’t? You have to learn about yourself, about the situation, about how you can heal, how you can overcome. You have to backfill those skills that you didn’t get along the way, that are going to be necessary for you to use to get you to the next stage.

Lara Kaufman 28:16
And what I found is you have to accept. You have to accept what happened soon as you accept what happened that Okay, now what do I have to do? Yes, what do I want to do?

Bill Gasiamis 28:29
Again it opens up more opportunities acceptance. I feel like it just opens up solutions, rather than problems.

Lara Kaufman 28:35
Exactly you go right to the solutions, as opposed to, you know, woe is me, and you know why me? And this is, yes, it sucks. You know, it’s not a picnic, it’s, it’s not a walk, it’s a mountain climb, it’s not a walk in the park, and it’s challenging, and it’s, you’re gonna cry and you’re gonna scream and yell and go through all the emotions, but go through them.

Bill Gasiamis 29:03
Yeah, go through them. Was this someone that you bumped into or that sort of turned up out of nowhere that you thought, Oh, well, and kind of helped you take the next step. Did you have a did somebody? I had a couple of people who sort of turned up out of nowhere, stepped up, became my mentors, people I didn’t expect and and they kind of had, they created a, like a shift in my trajectory.

Lara Kaufman 29:34
I can’t say that new people, per se, my husband was my wasn’t, is my rock. And he, you know, Google spoke to everybody, anybody possibly could, about stroke recovery and where to go. And so he laid the groundwork and found all the right, you know, people to contact, and helped me take those first steps. You know, when I came home.

Lara Kaufman 29:56
You know, the after outpatient. You know, the right, private therapy/therapists and social worker, physio, occupational therapists and all that, and and this, it was all about recovery at the beginning, and then, and then, my doctor was very for my physiatrist at my hospital was also a huge help. She sort of became an unofficial quarterback, and I say unofficial because it was not her role.

Lara Kaufman 30:27
She just, she’s the one who introduced me to the March of Dimes Canada program and said, you know, this is the person, this is the contact person you call, you know, if you want to do this. And so I, I called, you know, got involved, and then from there, got involved in lots of other things afterwards.

Bill Gasiamis 30:49
Did you have moments? Go ahead. What were you going to say?

Lara Kaufman 30:55
My friends rallied around us. Our friends and family were huge. Was very lucky to have a massive support system.

Bill Gasiamis 31:03
Yeah, yeah, it’s really important.

Lara Kaufman 31:07
Cousins drove me to my feet to my therapy appointments, and when my mother couldn’t do it. So it was very fortunate to have that support system. Not everybody has, and everyone rallied around us and brought dinners to my home, for my family, um, picked up my kids, took my kids, my best friend, organized like a grocery list, grocery shopping every week. People would sign up to do groceries for the every week for my family, um, and and organize pickups for my kids play dates and people’s and other after school programs. So I was really lucky to have that.

Bill Gasiamis 31:49
Yeah, wow. What a community. That’s awesome.

Lara Kaufman 31:52
And people who I wasn’t friends with, would, like, call my friends and say, you know, how can I help? I want to do something. So it was, it was amazing.

Lara Kaufman’s Journey and Tradition

Bill Gasiamis 32:02
Yeah, you do find people come out of nowhere all of a sudden, yes, family and friends, they’re obliged to an extent. But then there’s also, there’s, I’d say, some people, random people who I knew, but yeah, really know who did so much. And it’s and it was like, and then they did their job, and then they kind of went off and disappeared again.

Bill Gasiamis 32:24
I was like, Well, what’s all that about? I mean, I’m grateful for the way that it happened, whatever. I don’t have any expectations beyond that, but it was just amazing. They’ve just rocked up, done the they put the cape on, they did their thing, and then they just slowly, kind of, you know, went back to the place where they were when we knew eachother.

Lara Kaufman 32:49
And I was okay. I was very grateful for what I got. I never really questioned or said, yeah, oh, you should have done more. You should have done this. I was just very grateful for what I got. Yeah, not a lot. It was very grateful.

Bill Gasiamis 33:01
Yeah. Did you have surely, there were times when you had doubts and concerns and worries about everything you’re going through, what the future looks like. Are you that?

Lara Kaufman 33:13
At the two and a half year mark when the doctor said in the hospital, it’s going to take two, three year to recover. So I get to two and a half years, and I’m like, This is it? Like, seriously, after everything I have done for the past two and a half years, this is all I got. And I was like, and my physiotherapist said, it’s not true. It’s not true. You, you stop recovering when you, when you, when you just when you give up. If you don’t give up, you’ll still, you’ll always recover.

Lara Kaufman 33:45
He goes, you’ll plateau. Your recovery will be your your your prove your plateau. You’ll improve plateau. You’ll you’ll do this. And he said, so don’t listen to that. And he was right. And I have five plateaued many times over the 15 and a half years, and sometimes I taught for six to seven months where I’ve just been the same, but then I keep going, and then I start to see improvement, and so on and so forth. So my biggest pet peeve is when is is hearing people say the doctor said I’d never do dot, dot, dot. Because then a lot of people sit say, Well, then why should I even try? And that is, I get very angry.

Bill Gasiamis 34:28
I don’t understand why a doctor would say, you’ll never and then make a statement about it.

Lara Kaufman 34:35
They don’t know the doctors that save your life in the hospital, they’re not involved in the recovery. The physiotherapists that are, but even, like I’ve spoken, I do a lot of public speaking at universities and speak at like physiotherapy conferences and stuff, and I’ve said, you know, if you never use the word never, because you don’t know.

Lara Kaufman 34:59
Unless you’ve got, unless you’ve got a crystal ball, you don’t know, yeah, yes, you know what science can tell tells you. But science is improving every day. There’s new technologies and therapies being developed every year. And one of the things I did was, in addition to my husband, is I’ve researched the stroke recovery industry to see what’s new in the industry.

Lara Kaufman 35:22
And I see these new, new technologies and therapies being developed all over the world, and they’re coming to all, you know, in Australia, I’ve heard things, I’ve seen things in out of the United States and Canada and Israel, Germany, you know. And new things are coming out all the time, and so never and I actually, last year, I went to town called Victoria, British Columbia in Canada.

Lara Kaufman 35:53
It’s in the West Coast, and a doctor developed, I have had a lot of spasticity, and this doctor developed this new therapy treatment called cryoneurolysis. And basically what they do is they inject a very cold needle of minus 88 degrees into your spastic muscles and nerves, and it with the with the water in your muscle, it creates an ice ball.

Lara Kaufman 36:21
That ice ball effectively destroys the nerve, and the destruction of the nerve, then you basically it’s like the middle man between the brain and the muscle, takes away the spasticity and just and for minimum of six to nine months, so sometimes even longer, and I went last June, and it was brilliant, and it was a game changer.

Lara Kaufman 36:45
I had no movement in my arm. I couldn’t my tricep was so tight that you I was like straight was my right arm, but it was straight. And now I can, with with assistance of the back of the with my shoulder stabilization. I can do a bicep curl. You know, I may go back in September for my fingers, my fingers, I still can’t open them. I can make a fist, but I can’t open them. So he said, he would consider maybe doing some different muscles this time, but it was a huge thing.

Bill Gasiamis 37:23
Can you ask him for me if he would be on the podcast? I’d love to interview him.

Lara Kaufman 37:27
Oh, he probably would in a heartbeat. Yeah, please. He’s the nicest man, and he actually went to Europe, I don’t know how long ago, and he saw they were doing some things like this in Europe, and then he with, with no money, he started this clinic in Victoria, British Columbia, and he’s now training doctors from all over the world to learn this treatment.

Lara Kaufman 37:57
You know of a physiatrist in in Melbourne who would be interested in, like, who’d be interested in learning this? He can go to he or she can go to Victoria and train.

Bill Gasiamis 38:09
Well, I’d be up for looking into that, learning more about it, and then going from there. It’s the kind of information that people with spasticity, who stroke survivors are so many of, oh yeah, would love to hear about. And if it’s that, if it’s it doesn’t seem that invasive.

Lara Kaufman 38:28
It’s painful, but it’s not invasive. There’s no drugs, and they’re not injecting anything into just putting a very cold needle into you. So it’s, you know, using the water and, like, it’s, yeah, it was amazing.

Bill Gasiamis 38:47
And then pain, decreases your pain, and all that type of stuff?

Lara Kaufman 38:52
It decreased my pain, my discomfort. And, you know, I was able to, like, lift my arm all the way back this, whereas before I could get to here, now I can go all the way back, and the spasticity has returned. It has not, not as bad as it was before, but it has returned.

Bill Gasiamis 39:15
And then do they know why it returns?

Lara Kaufman 39:20
Because your nerves grow back. The nerves get destroyed, but they do grow back, but it takes six to nine months. So what it does is it gives you a six to nine month window to do rehab, whereas, I’m sure you’re familiar with Botox treatments, Botox gives you a three to five week window. You know, three to four times a year. This gives you a six to nine month window to gain movement, instead of that three to five week window, which is tiny, yeah, and I did Botox for 14 years and got that much improvement.

Bill Gasiamis 39:57
Zero, yeah, I know some people have it’s very hit and miss for a lot of people, what was that treatment called again?

Lara Kaufman 40:04
Cryoneurolysis.

Bill Gasiamis 40:06
Alright, everyone Google the heck out of that.

Lara Kaufman 40:08
If you Google cryoneurolysis spasticity, I don’t know I could spell it. There’s a YouTube video of doctor Paul Winston.

Bill Gasiamis 40:29
We’re going to find it. We’ll have the link in the show notes. We’ll make sure people can watch it, and then I’ll have, I’m going to reach out. I’d love to interview the doctor about that.

Lara Kaufman 40:38
Dr. Paul Winston out of Victoria, British Columbia.

Bill Gasiamis 40:42
Yeah. Okay, excellent. So that’s the thing, right? 15 years ago that wasn’t on the on the horizon.

Lara Kaufman 40:53
Exactly, that’s even 10 years ago. So that’s why I’m saying, like, new things are coming out all the time, you know? So you know, the best time to have a stroke is 20 years from now. Apart from that, it’s today.

Bill Gasiamis 41:06
I read the book Think and Grow richer by Napoleon Hill. I think I read it about 30 years ago and in and the book was written in, I think, the 1920s and you know, Napoleon Hill has a reputation for being a bit of a kind of like a capitalist, you know, the worst kind of capitalist, I think there’s a lot has a bit of a reputation for that.

Bill Gasiamis 41:29
But what he was doing was sharing stories about how you think, how you put your mind, into work, and the results that it gives you, you know what you think is perhaps what you’re going to get anyhow, one of the passages I specifically remember was that his son was born deaf, I believe, either in one year or in both years.

Bill Gasiamis 41:55
And the doctors back then said that he’ll never be able to hear anything, because he’s been he has been born deaf, and then, sure enough, the first iteration of hearing, surgeries or devices to help people hear start to come, start to be invented around 20 or 30 years after his son’s born, and Sure enough, his son gets to be able to hear and it’s the story that you read 100 years after it has been written, and you go, Oh man, like the thinking hasn’t changed, the way you approach life hasn’t changed, the way you talk about problems hasn’t changed.

Bill Gasiamis 42:42
Everything is basically the same. We’re the same as we were back then. The times and circumstances and some things might be different, but general ways to go about life are never, are never, never different. They’re always the same. You always have to have the same philosophies that people have used for 1000s of years. That’s why we get so much when we learn from the ancient Greeks, it was 2000 years ago, and we pick up those books, and we read about them, and we hear about them, and we apply them to our lives, and we say, wow, that’s transformative.

Bill Gasiamis 43:14
Well, it’s not it’s just humans. It’s just what humans do, and certain things impact you in a negative way, and certain things impact you in a positive way. And if you’re a doctor, and you go through all the study, all of the cost, all of the effort, all of the hours at the hospital, all of these things, years and years and years, 1000s and 1000s of dollars, hours and hours and hours, you get a patient, they have a stroke, you patch them up, and just before you send them home, you finish with you’ll never do that again. What’s the point of it all?

Lara Kaufman 43:53
Yeah, my my doctor actually said to me, you know, after I says, After telling me, you’ll never do blah, blah, blah, you’ll never play piano. You’ll never, you know, type, use your use your left hand to type on a computer. And I looked at him, and he’s like, prove me wrong. Now, I haven’t been able to do that yet, but I say yet. I always say, yet, yeah.

Lara Kaufman 44:16
But then, you know, years later, when I saw him at one of my appointments, he goes, You know, I have he goes. He goes, I have to, I have to learn more about the human will, because I’m seeing that the human will plays a huge role, you know. And I really believe that attitude is everything, yeah. And the best part about it positive attitude and gratitude, that it’s free, doesn’t cost anything to be grateful, and yet it can actually help. It can actually improve your recovery.

Bill Gasiamis 44:45
Absolutely, there’s a chapter in my book about it. It’s the it’s your mindset. It’s the first chapter in my book. If you’ve got the wrong mindset, all the rest can forget about it. Yeah, have the right mindset, you have to apply a recovery mindset.

Lara Kaufman 44:59
There was a study. In the US, of on US war vets who suffered traumatic brain injuries, and it proved that the ones who are more resilient recovered better and faster and stronger than once someone’s who didn’t. And resilience is like a muscle. The more you use it, the stronger it gets. So, yeah, you know, tap into you can tap into your resilience, which you have. Everybody has. You know, you can actually recover better, stronger and faster.

Bill Gasiamis 45:27
I have a little bit as well. I have a theory about my my guests on my podcast compared to the people who are not on my podcast, not saying that everyone has to be on my podcast to have the why? Not? They do. They do. I need to get to 1000 episodes. But that’s not the point. The point is like people who are sharing on the episode are demonstrating something every single episode, and every person is different, but they are all demonstrating something.

Bill Gasiamis 45:59
And that’s something to me, is like the willingness to talk about, learn from expand your mind, your horizons, share information that you’ve gained and learned, and those things come together and are a very important part of your healing and your recovery.

Bill Gasiamis 46:18
The the willingness to want to turn up to a podcast and share your story in the hope that it might help other people, says something about how far your recovery has come. And that doesn’t mean that the amazing people who leave comments, who subscribe, who help me with Patreon, who watch the YouTube ads. It doesn’t mean that they’re not doing that.

Bill Gasiamis 46:42
What I’m sort of saying is, is that I think that sharing on a podcast, regardless of whose it is, is like shows you’ve arrived. It’s the next level, the thing that you what else can I do to improve my recovery? I’ve done nutrition. I’m sleeping better, I’m exercising more. I’m more grateful I have good I’ve improved my relationships.

Bill Gasiamis 47:04
Like, what’s next? Well, now it’s about other people. It’s how do I impart my wisdom, my knowledge, the things that I’ve gained, onto other people? That whole thing sort of suggests that you’ve arrived not at the very end of the whole thing, but at a next stage, at the next level, I’ll call it the next kind of like, well, we’ll just call it a stage. You know, you’ve arrived.

Lara Kaufman 47:31
The Gasiamis effect.

Bill Gasiamis 47:32
Yeah whatever, we’ll give him my one, yeah, we’ll give him my Gasiamis. You’ve arrived to stage Gasiamis or something I don’t know, not at all doesn’t have to be on my podcast. But you know what I’m saying? It’s about that you’ve made it about others. It’s not about you anymore. Even though the podcast sharing is about you, it’s also not about you.

Bill Gasiamis 48:01
And, I think that would be lovely if people said, I’ve been listening for three years, and now I finally decided to reach out to be on the show. I mean, that would be great, because they perhaps gained courage, they perhaps confidence. That perhaps gained wisdom, knowledge, you know, is Yeah, stage you have somewhere, yeah.

Bill Gasiamis 48:26
So I love what you’re saying there. And you know, the statistics are statistics for a reason. They they are just there to inform a way forward from a certain situation out of a hospital, just for the time being. As statistics never stay the same. They always change as the population changes, as our abilities change, as our technology changes, statistics always move.

Bill Gasiamis 48:55
And you can’t take one snapshot in history and go, I’m going to apply that to every single stroke survivor I meet afterwards for the next 15 years, it’s just not it’s not smart. That’s not what you do. You use it to inform your decision at the time, but then at some point, those statistics are no longer relevant because things are completely different.

Bill Gasiamis 49:16
And anecdotal evidence should inform you enough to say, Okay, I have, I’ve told 10 strokes survivors they’re never going to do X again. And I never followed up to find out if they did do X. And that’s the that’s my biggest challenge, is they make a statement, they send you on the way, and they never call you up and say, by the way, did you ever walk again or whatever, again, and it frustrates me no end. It’s one of the my biggest pet peeves. Don’t believe him.

Lara Kaufman 49:51
And the thing is, like, you know, like I was talking with my physiotherapist a couple weeks ago about, you know, recovering my arm, and I’m putting in, you know, three. To three, three to four hours a day of rehab, just in my arm, you know, for the for the past year, and, you know, in hopes that it’s going, I’m going to get the use of my arm back. Yeah, I have no guarantee.

Lara Kaufman 50:12
There’s zero guarantee is there’s hope, and that’s what I’m, that’s and that’s what I’m, what’s what I have hope that it will, you know, make a difference. And he said to me that the reason that there’s no there’s just, you know, there isn’t documentation for somebody 15 years post stroke, who’s putting in this many hours a day, you know, to the statistics aren’t there. So then it’s just all on me. So you’ll get it. You’ll get these. You get partial use of your arm, all of it, you know, or you won’t get any. Well, I already have some. I can already, you know, do some things with it, but.

Bill Gasiamis 50:51
One guarantee is that if you do nothing, you’ll definitely get nothing.

Lara Kaufman 50:56
That’s my saying. I my I have a quote. There’s two guaranteed things in life, death and taxes. I have found a third do nothing and nothing will happen. Do something, and you can get this much, this much or that you don’t know, but you don’t know if you don’t try.

Bill Gasiamis 51:14
You have to go after it. I completely agree. So looking back on your journey, 15 year journey. How have you changed, physically, emotionally and or mentally? Are you a more expanded version of yourself? What are the what are the biggest lessons been?

Lara Kaufman 51:38
Oh, that’s a big question. Um, physically, I’m like, I’m able to, I’m just, I’m independent, I’m I drive a car, I do my grocery shopping. I’d run errands. I, you know, able to. I’m physically active, not like I was before, obviously, but I am physically active. Um, you know, my husband, are traveling the world.

Lara Kaufman 52:04
Something that we really want to do, coming to Australia is going to be a is a big trip. It’s, you know, we’re going to be doing a lot, and I didn’t want to give it up. And I, you know, I didn’t want to give up something that I love to do.

Lara Kaufman 52:20
So I’m doing it. It’s a challenge. There are some we’ve had some interesting challenges, but we just kind of, I suck it up and do whatever, just do the best that I can do, you know, given the situation, and that’s so I’ve, I’ve, I’ve learned to be more accepting of myself and learn to give up, not give up things that I want, but except in a different way.

Lara Kaufman 52:51
I believe I’m more grateful for what I have than, probably what I, you know, prior to more accepting of people, other people as well. It’s, it’s so hard to say because I don’t remember exact I never asked myself, like, what was I like before? Like, I don’t remember sponka. You know, I was 41 years old when this happened, you know, so I don’t remember like, I and I think, you know, what’s interesting is that you know, right right after the stroke, I could remember everything.

Lara Kaufman 53:37
You know exactly the way I was and how I am, how I was, post and pre. And you know what I felt when I when I had a bad day? It felt like it was like a really bad day, even though, you know people, you can have strokes of hours. Have bad days. Normal people, regular people, have bad days.

Lara Kaufman 53:57
And what I didn’t realize, what my social worker points out to me, she’s like a lot of people put their pre stroke life on a pedestal, and they think that they were here when they probably were here, wow, and now here. So they would, they think that, that they fall in, you know, so much further than they actually did, because pre stroke was, that was this glorious life where you never broke a nail and nothing bad ever happened, you know, and we all know that that’s just not true, right?

Lara Kaufman 54:29
So when she said that to me, I realized that the fall, yes, I fell, but I didn’t fall as far, the drop wasn’t as big as I thought may, and how that me kind of put things to perspective. But now that it’s been so many years, I don’t remember, yeah, I think I was as good of a person as thin as I am now.

Bill Gasiamis 54:52
I love it. I love it. The Fall, how far you’ve fallen. That’s really amazing, isn’t it? That’s all tied to identity. I think if you identify it as somebody who, if your identity was shallow or or confined to some small number of things, I am a office worker or I’m a gym junkie, I am a whatever I am, and there wasn’t a larger version of that, and now you’re not those things, then you could see the fall from grace, supposedly could be, yeah, appear more dramatic than it is.

Bill Gasiamis 55:31
And then the idea is to expand your identity. Is to find, even though I’ve had a stroke, what what can I become? It’s not about what I was and and why can’t you be a gym junkie that has left side deficits? I mean, I’ve interviewed stroke survivors who were power lifters. One particular lady was a parallel power lifter. Her left side, I think, was the of a scrawny little kid. Her right side was the size of a power lifter.

Bill Gasiamis 56:04
She was completely but she was a power lifter, and that’s the thing we haven’t you’ve got the opportunity to redefine your identity and to start moving in directions you’d never done before. I mean, there’s so many stroke survivors who have probably won gold medals at the Paralympics and on all sorts of world stages that weren’t in that space before stroke, and never occurred to them to do or to compete in that kind of way until after they had this stroke.

Bill Gasiamis 56:36
So you that it’s just imaginary. The whole pedestal that we fall off of is imaginary 100% and if you are, and if you sort of associate your success with I achieved X, Y and Z, or I had this much money, or I worked that many hours, or then again, you’re limiting yourself based on what you do, not who you are as a human person, you know, like, what you do.

Lara Kaufman 57:09
That’s what I mean. What was I before my stroke, I was a full time working supermom, yeah, you know, who would try to do, you know, kill, multitask as much as possible, you know. So when my kids went to karate, I went grocery shopping and, you know, at the same time, because God forbid, I should spend the 45 minutes watching them do karate. You know, I had to go do an errand because I was working during the day.

Lara Kaufman 57:39
And, you know, try and kill as many birds with one stone kind of thing is as possible. Was Michael, after my stroke, I couldn’t read a magazine and eat breakfast at the same time because, like, if I would read and forget to eat, or eat and forget to read. So I couldn’t multi, like, that’s considered multitasking. I couldn’t do that. And, you know, as a point, you know, once I was able to do it. Now I read during breakfast every day as kind of as a screw you stroke thing.

Bill Gasiamis 58:11
That’s training as well. It’s multitasking, and it’s helping Neuroplasticity and all sorts of things. Yeah, yeah, yeah. I love it. So you you probably see stroke as something that shaped you in a very meaningful way.

Lara Kaufman 58:25
Yes, it’s given me a purpose, for sure, to help, to to help others. And it’s really given me, you know, I went from accounting, which is great, you know, but it’s a job, you know, to, you know, actually helping people with their law, helping people get their lives back.

Bill Gasiamis 58:46
Yeah, and it’s it gave you meaning, not like you didn’t have meaning before you had children and, yeah, family, but it’s expanded it, right? So that’s the thing, that’s another thing that people don’t seem to realize early days of stroke, is that meaning doesn’t have to end because you had a stroke and now you’re not doing all the things you did before, your meaning can can also be expanded. You can be a parent, even though you’re not the karate going parent anymore, you can still parent in a different way.

Lara Kaufman 59:18
In fact, actually, right after my stroke, when I couldn’t do anything except for sit on a couch basically, and watch TV all day. You know, I felt like I had lost my identity and and somebody said to me, you know, you’re still a wife, a mother, a daughter, a sister and a friend, and so I could be all these people from the from the spot on the couch, yeah, right. I could play all these like it’s still, you know, nag my husband. I could still, you know, give him crap when he did something.

Lara Kaufman 59:51
I could still tell my children what to do. I could still do all those things. Still, you know, have lunch with my sister or my friends. They could. Still do all these things from the very comfort of my couch. Yeah, you know, being unable to walk, being unable to move to to drive a car, to do to work, to do all these things. And so when I realized I had, I could, I could wear all these raw wear all these caps in the comfort of my house, the comfort of my couch that helped me, that gave me hope that I I’m not useless, because I did feel useless at the beginning. Yeah. What good am I? I can’t do anything. I can’t do anything.

Bill Gasiamis 1:00:37
Well, it’s such a big shift in a very quick shift from being super mum to being couch mum.

Lara Kaufman 1:00:44
Not even nailed a little, big bathroom by myself.

Bill Gasiamis 1:00:47
It’s so dramatic. And it completely makes sense people find themselves there. The idea is, okay, it’s temporary. It is. It might seem like forever when you’re going through it, and it might feel like never ending, but it is temporary. Now on this in the span of a lifetime, it’s temporary in in the span of the two months since the stroke and since you found yourself on the couch not being able to do anything.

Bill Gasiamis 1:01:15
Okay, it seems like forever, but it’s gonna go, it’ll it’ll pass. You’ll look back and you’ll go, my gosh, it was five years ago. I had this struggle. It was 10 years ago I had this stroke. I can’t believe how quickly it has gone for me and seemed slow at the same time too. I’m experiencing, you know, two versions of time all at the same time, quickness and slow. Yeah, exactly. So I don’t know how I got here that quickly, and it took so long. Does that make sense?

Lara Kaufman 1:01:50
So true, and I was in the hospital for four months, yeah. So this was, you know, I didn’t get home till four months post stroke, and then I could, I still couldn’t go to the bathroom on my own. But because, but I, but, you know, as a 41 year old mother who toilet trained three children, you know, I was determined. So the first thing I learned to do when I came home from the hospital was teach myself to go to the bathroom by myself. And was the first thing I did. And I did it pretty quickly. I think, you know, I don’t remember how many weeks it took, but look, I just want to close the bathroom, close the door, not if somebody’s standing next to me.

Bill Gasiamis 1:02:34
That’s a fair, a fair request.

Lara Kaufman 1:02:37
Yeah, you literally take your dignity and leave it somewhere else after a after a stroke, for many people.

Bill Gasiamis 1:02:45
Yeah, that’s a very, very, very important milestone in anyone’s recovery, to be able to toilet themselves.

Lara Kaufman 1:02:53
Did you have physical deficits after your stroke?

Bill Gasiamis 1:02:55
Yeah, so physically I was all good until surgery, and then after surgery, one of the complications was I woke up with left side deficits, couldn’t feel my left side, couldn’t walk, couldn’t use my left arm a whole lot, and had sensory issues, still have numbness and little bit of spasticity. It doesn’t close any of my fingers up, but I feel it in my muscles, the way that they open and expand and contract, they get painful.

Bill Gasiamis 1:03:30
It puts me out of balance on my leg, so my leg is a little bit weaker, my left leg, so I tend to sway a little bit when I walk. I bump into my wife all the time and walk next to each other, and she’s always complaining, why do you keep bumping into me? It’s like I become magnetic.

Lara Kaufman 1:03:52
Love, touch, love, touches.

Bill Gasiamis 1:03:57
Yeah, I’ll rename him actually, yeah. I love that. And what happened after surgery was I found myself day day one out of surgery, nurse came to me and my bed said, have been to the toilet yet? I said, No. Said, Okay, let me help you go to the toilet. She was on my left side. I reached off the left side of the bed, put my left leg down, and I’m not I’m like hours out of surgery, collapsed in in intensive care, or wherever I was, whichever unit I was in, I don’t think it was intensive care.

Bill Gasiamis 1:04:31
It might have been high dependency, and I’m on my ass hours after surgery, first fall after surgery, what with a nurse standing next to me, she was tiny. I’m I’m not quite six, or I’m probably about 5859, and she was tiny compared to me, and she probably went, half what I weigh, and she goes, I’ll help you. And put your arm around to be well, it made no difference. I’ve put my arm around her, and I was just bang straight on. The ground, and screamed my lungs out, and then realized, okay, I cannot walk.

Bill Gasiamis 1:05:06
Then they put me back into the bed, and my surgeon comes along, and she goes, What’s going on here? And I said, Well, I can’t, can’t walk. I fell out of my bed. And she said, Okay, I’ll put you into rehab. In rehab, I got to rehab seven days later. By the time I went through all the after surgery staff, and they were trying to suss out my situation, where I was at, and I remember being in the ward now waiting day two, I’d say, being in the ward, waiting for the nurse to come after I press the buzzer to go to the toilet knowing I can’t walk.

Bill Gasiamis 1:05:44
And they’ve put me on laxatives, slow release laxatives for two days so that their bowels can move, because they hadn’t moved yet, and then they kicked in. And then I’m at I’m on in my bed. The nurses aren’t coming back after I’ve pressed the buzzer, and there’s a wheelchair next to my bed, and I lean forward with my right side, I grab the wheelchair, and I drag myself off the bed, and I end up in the wheelchair.

Bill Gasiamis 1:06:11
And I can’t push it much, but I’m pushing it as much as I can to get to the door of the toilet, which is at the end of my bed. It’s literally three meters away, four meters away, to get to the end of my bed. And I get into the toilet. I open the door, get into the toilet door, and the nurse turns up. He said, What are you doing? I said, I’m trying to go to the toilet.

Bill Gasiamis 1:06:30
She goes, you’re supposed to wait for us. I said, I’ve been waiting for ages, and I’ve gotta go I’m busting, I’ve gotta go. Please get me onto the toilet. They get me onto the toilet, and then they’re not leaving. And I said, okay, yeah, go now. She’s like, I can’t leave you in here alone. You’re a high risk of falls, all that kind of stuff. Have to stay with you.

Bill Gasiamis 1:06:55
I said, there is no way I’m going to let you stay there. You have to please close the door. Just go to the other side of the door. Please do not stay in here with me. We argued for what seemed like forever. We didn’t really argue, right? I was just being begging her, basically, I got to begging, and she finally said, Okay, I’m gonna go behind the door. Do not get up. Do not move. I said, I swear to God, I’m not going to move or do anything.

Bill Gasiamis 1:07:22
I’m just going to do what I have to do, and I’ll call you as soon as I’m done. And sure enough, we went through that process and we got done. But that was my first experience, you know, my realization that things are not well and things are not going exactly as I planned or thought they would, and I’ve got to have to challenge myself to overcome some more of these issues that I never experienced for three years of brain hemorrhages, because I had my brain hemorrhaging three times over almost three years.

Bill Gasiamis 1:07:52
So I had deficits. I had memory issues and cognitive issues and speech issues and fatigue and every kind of issue you can possibly imagine, uh, after the bleeds, but never anything physical. And this was the first time. So it was quite a, it was quite a, quite a drama. But like you, I don’t know what it was. I just had this weird kind of calm amongst all the chaos, because there was also chaotic moments, etc.

Bill Gasiamis 1:08:26
I had this weird calm, oh, you can’t walk. Oh, all right, well, we’re gonna have to learn how to walk again. I wasn’t quite concerned that I’ve got to walk. I was just concerned that I couldn’t go to the toilet on my own and and I didn’t know if that would come back or not, but it was a big drama right there. After the moment passed, I went back to regular chill, relaxed bill in the in the bed, just waiting for things to happen, you know.

Bill Gasiamis 1:08:53
So I had this under I had this calm about all the obstacles that were in front of me, I just figured they were obstacles. It may have helped that I did a lot of counseling and coaching beforehand. It may have helped that I had already started to kind of reach out to medical professionals and learn about Neuroplasticity and all that type of stuff. But I didn’t take any of the setbacks as permanent. I just took them as stuff I’ve got to overcome. I didn’t know, how.

Lara Kaufman 1:09:26
Yeah me too, I think for me, it was just delusional, or just not. I didn’t understand the gravity of what had happened. Yeah, okay, this is what this is. I can’t walk right now. I can’t do this. Okay? Well, I will, you know, it’s gonna take, I’ll rehab, yeah, like, I’ll rehab. Just like, Yeah, I’ll just rehab. We have my way back.

Bill Gasiamis 1:09:48
And I had this bigger picture understanding, you know, where I and I love to throw in this example every time I remember in the podcast. Last episode. It’s like Stephen Hawking, the great physicist you know, who was at the top of his field and had zero ability to move a single muscle in his body for the majority of his adult life. And it’s like, if that’s the if that’s what’s possible, well then, you know, I don’t need to get overwhelmed or over, uh, overly concerned about all the challenges that I might face that I don’t know about, because that’s what it was possible for this, you know.

Bill Gasiamis 1:10:37
So once you sort of expand your thoughts about like what people are achieving in life, and who is the most limited person in the world and achieving the most in the world. Stephen Hawking, well, then I don’t know what’s what? What’s the excuse to focus on all of the problems and all of the deficits and all of the obstacles? What’s the what’s the excuse? There’s there’s no credible reason to be focusing on all the things that we can’t do.

Lara Kaufman 1:11:07
That’s actually a really good way. They never thought of that. But you’re 100% right.

Bill Gasiamis 1:11:13
Once you start at the at that level, it’s like, okay, all the rest is in the mind, it’s all arguably, it’s all bullshit. It’s all just shit you come up coming up with to limit yourself because you’re afraid or something.

Lara Kaufman 1:11:26
And for me also, like I also learned 10% of people who have a stroke die, yeah, and I didn’t. And so there’s just based on the fact that I’m alive, there’s a greater purpose for me, there’s, I didn’t survive. Just, is it just luck? I didn’t buy it, you know? Yeah, I there’s, there’s a reason, yeah, um, also my, in addition to what I said, best thing I said earlier.

Lara Kaufman 1:11:59
So when I had my twin daughters were born via gestational surrogate, um, with three years of infertility, and then we they were born, and then they were 14 months old. I got pregnant. We call it Immaculate Conceptions. We have no idea. We had two. We had 214 month old babies, you know, walking around, crawling around, and so we weren’t looking for a third, or wasn’t planned.

Lara Kaufman 1:12:31
And, you know, so when something good happens, you call it a blessing. So what? What do you see? You call it a curse when something bad happens. I don’t believe it. I don’t believe in curses. So I remember, I remember when I got pregnant with my son, I remember thinking how the stars had to been lined up, just so for me to get pregnant with all the issues that I had, and so it was meant to be.

Lara Kaufman 1:12:58
So my my because my ski accident was also a freak accident. The stars were lined up, just so, for this to have happened, it was, it’s meant to be. So if it’s meant to be, then there’s going to be something. There’s good. Good has to come from this. And so then I said I was like, looking for it for a while, and then eventually, you know, I found, I found the good and helping other people, and it made me feel good, and I was helping other people as well, and just gave me a sense of purpose. Yeah, the greater than more beyond being an accountant.

Bill Gasiamis 1:13:40
Did you put away your skivvy and your blouse and all that kind of stuff?

Lara Kaufman 1:13:48
We don’t have that, never did accounts, those for lawyers, not accountants for accountants. Get a calculator. I love it. But actually, my son is, is actually in the school to become an accountant, and my father was an accountant, so he, if he, when he, if he passes his exams this September, he’ll be the third generation in our family, so, and I’m helping him along.

Bill Gasiamis 1:14:16
There’s a history there. That’s great. There’s nothing wrong with that. It’s a great profession. Of course, we’re just playing around. If anyone is an accountant, don’t get offended. We love accountants. They keep us probably paying less tax or something and out of jail, yeah, for sure, it’s been a real pleasure getting to know you and chatting to you.

Bill Gasiamis 1:14:36
Thank you so much for joining the podcast. I’ve got one question that kind of comes up every so often, is, why after 15 years, is it necessary for you to join me on the podcast? Like, do you know what I mean? I always think about me as being strange and bizarre that I’m 12 years out and I’m still thinking about stroke, and talking about it every day, like, why do you feel the need to still share about it on the podcast?

Lara Kaufman 1:15:07
Because I feel like I’ve been successful, not 100% but I feel like I’ve been successful. And so if I can do it, I think other people can too, and as long as they I believe that, you know, we would joke, because when my speaking, I my husband refers to me as the goat of stroke survivors, you know, and so and, you know, maybe he refers to me as that. But I think that I’m just one of you know, 1000s of other people just like me, who, if you get the right maybe navigation, you know, tools. You can be just like me too, and have success.

Bill Gasiamis 1:15:48
I love it. I love that you have success and it’s despite what you didn’t get back, or what you potentially supposedly lost.

Lara Kaufman 1:16:02
I’m grateful. I have a good life.

Bill Gasiamis 1:16:06
I love that. That’s a great way to frame it, is, even after all this time you’ve had success. And that is what I hope for every stroke survivor listening, is that they can get to that stage where they can feel like they’ve had success, a small one, a little one, a big one.

Lara Kaufman 1:16:22
Yeah. And what we do? I should have mentioned this earlier. What we do in our family. My husband started this four years post stroke. Is every year on the anniversary of the accident, we celebrate with a cake, and we put a word on the cake. So the first year was my husband and daughter were talking the day before, like on February 12, 2014 he goes, do you know tomorrow? She goes, yes, the day Mommy had her accident, and he said, how should we celebrate it? She goes, we should buy a cake.

Lara Kaufman 1:16:49
And he goes, Okay, let’s put a word on the cake. What word should be? She goes, accomplishment. And then every year, you know, my other daughter picked the word. The following year, my son, then it was my husband’s turn, and then it was my like, you know, so every so we have, every year I’ve got, like, I don’t know, it’s 12 years now, 12 years of 12 cakes and every one there’s a word.

Lara Kaufman 1:17:12
So now I look every February 13, we look forward to what’s the word going to be. We figure out who’s going to pick it, whether it’s someone in the family or a close friend. And, and, you know, I look forward to, the anniversary to see what word is going to be chosen.

Reflecting on Lara’s Achievements

Bill Gasiamis 1:17:27
Yeah, that’s a great way to reframe it, and an amazing tradition. I love it. On that note, Lara Kaufman, the goat of stroke recovery. Thank you so much for joining me on the podcast.

Lara Kaufman 1:17:40
Thank you. Thank you.

Bill Gasiamis 1:17:43
Before we wrap up another thank you to Banksia Tech for supporting this episode and making stroke rehabilitation tools like the Hanson rehab glove accessible to more stroke survivors. If hand movement is part of your recovery, this glove might help visit Banksiatech.com.au, or use the links in the show notes and the YouTube description.

Bill Gasiamis 1:18:05
Now, let’s pause and reflect. Lara Kaufman didn’t just endure a massive ischemic stroke caused by an internal carotid artery dissection. She didn’t just survive paralysis, craniotomy and years of uncertainty. She went further. She mentored other survivors. She co-facilitated support groups. She even tried a cutting-edge treatment, cryo neurosis, and saw breakthrough results.

Bill Gasiamis 1:18:34
And every year, she celebrates her stroke anniversary with her family by choosing a word and putting it on a cake a word like accomplishment, gratitude, purpose. But she’s not just recovering. She’s redefining success, one word, one step, one story at a time. If this episode resonated with you and you’d like to help me reach 1000 stroke survivor interviews, consider supporting the podcast on Patreon, your support covers the editing, publishing and sharing of real recovery stories like Lara’s.

Bill Gasiamis 1:19:08
Just go to patreon.com/recoveryafterstroke, and if you want more stories of post-traumatic growth, check out my book, The Unexpected Way That a Stroke Became The Best Thing That Happened. Written by a survivor for survivors. Links are in the show notes and Youtube description until next time, keep enduring, keep redefining, and remember you’re not just relearning your rebuilding. See you on the next one.

Intro 1:19:35
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:20:05
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Intro 1:20:30
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Intro 1:20:54
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The post From Stroke to Service: Lara’s Unlikely Recovery Journey appeared first on Recovery After Stroke.

What Every Woman Needs to Know About Stroke Symptoms: Chanell’s Story of Recovery and Identity

When you think of stroke, you might imagine it’s something that happens to older men. But the reality is far more complex, and far more urgent for women to understand.

Stroke is one of the leading causes of disability and death in women, and yet many women still don’t recognize the early warning signs, or they dismiss them as stress, migraines, or fatigue.

This is why stories like Chanell Havenga’s matter so much.

A Stroke at 35, During a Routine Procedure

Chanell, an adventurous and high-achieving 35-year-old industrial psychologist from South Africa, went into a hospital for a 15-minute cortisone injection to relieve years of debilitating headaches. She never expected it would be the beginning of a long fight for her life.

What was supposed to be a simple medical procedure resulted in a massive ischemic stroke, which left her unresponsive for hours. An MRI later revealed that large areas of her brain had been affected. Doctors told her family she might not survive the night, and if she did, she might never walk, speak, or function again.

Women Stroke Symptoms Aren’t Always What You Expect

Many of the women stroke warning signs Chanell experienced before her event had been dismissed by her and others as “just headaches.” But stroke symptoms in women can present differently, and they’re often overlooked or misunderstood.

Some of the most common women signs of stroke include:

• Sudden and severe headaches
• Nausea or fatigue
• Confusion or memory loss
• Loss of balance or dizziness
• Difficulty speaking or understanding language
• Blurred or double vision

If you’ve been experiencing symptoms like these, don’t wait. Stroke in women is often underdiagnosed simply because it looks different from the “classic” signs most of us hear about.

Relearning Everything After Stroke

After waking from her coma, Chanell couldn’t walk, talk, or even swallow. She spent six weeks in a rehabilitation hospital learning how to be human again, learning how to sit, eat, and stand. During COVID, visitor rules meant she had to fight for the right to see her support system daily, and she did, advocating for herself even when she had very little voice.

And that’s what makes her story so powerful. It’s not just about surviving a stroke—it’s about fighting for who you get to become after one.

The Post-Stroke Identity Crisis

“I remember waking up and thinking, ‘Who the hell am I now?’” Chanell said.

That question haunted her. Before the stroke, she had built her identity around being driven, competent, and full of energy. Suddenly, she was navigating life with neurofatigue, slurred speech, vision problems, memory loss, and hypersensitivity to noise.

What do you do when you can’t go back to who you were, and you’re not yet who you’re going to be?

For many stroke survivors, especially women, this post-stroke identity crisis can be just as hard as the physical recovery. Society often defines us by what we do, but what happens when you can’t do those things anymore?

Turning Pain into Purpose: My Stroke of Luck

In the quiet moments of rehab, Chanell began journaling. She captured her rawest thoughts, fears, and even her sense of humor as she stumbled her way forward, page by page. Those journal entries eventually became her published book:
My Stroke of Luck

Her book isn’t a “pity party.” It’s an unfiltered, honest, and even funny account of stroke recovery from a woman’s perspective. And it’s exactly the kind of support she wishes she had when she needed it most.

“It was the diary I wish someone had handed me in the hospital. Something that said: ‘You’re not crazy. This is just what healing looks like.’”

Why Women Need to Know This

Too many women ignore the early signs of stroke. Too many doctors misdiagnose them. Too many workplaces and families aren’t prepared to support them when it happens.

If you’ve ever searched for stroke for women, women stroke symptoms, or stroke in women, you know how scattered the information can be. Chanell’s story cuts through the noise. It reminds us that:

• A stroke can happen to younger women.
• Stroke symptoms in women may not follow the “typical” pattern.
• Full recovery isn’t just physical, it’s emotional, mental, and existential.
• Finding purpose post-stroke isn’t only possible, it’s powerful.

Chanell Today

Four years later, Chanell is using her background in psychology and her personal experience to help others. She’s:

• Volunteering at a stroke rehab hospital
• Raising awareness on the radio and in hospitals
• Exploring a podcast for stroke survivors in South Africa
• Offering psychometric coaching to help others rediscover who they are

She turned a life-altering stroke into an opportunity to reconnect with her values, use her voice, and become the guide she wished she had.

Final Word

If you’re a woman, or you love one, take a moment to understand the unique way stroke presents in women. Don’t brush off the headaches, the fatigue, or the “weird feeling” you can’t explain.

And if you’re already walking the post-stroke path, know this: you are not alone, you are not broken, and your story isn’t over.

Sometimes, the most powerful version of you is the one who emerged after everything changed.

Women Stroke Symptoms Often Go Unseen — Here’s What Saved My Life and Changed It Forever

Chanell’s stroke at 35 stole her words, but gave her a new voice. Her story is a roadmap for any survivor seeking strength, purpose, and healing.

Facebook
YouTube
Book: My Stroke of Luck
LinkedIn
Support The Recovery After Stroke Podcast on Patreon

Highlights:

00:00 Chanell Havenga’s Background and Early Life
09:23 Chanell’s Stroke and Initial Recovery
11:28 Identity and Existential Crisis Post-Stroke
27:29 Advocating for Oneself and Overcoming Obstacles
54:33 Chanel’s Journey to Publication and Advocacy
1:14:44 Emotional and Mental Recovery Post-Stroke
1:23:44 Adjusting to a New Normal and Finding Purpose
1:24:43 Reflecting on Personal Growth and Change

Transcript:

Introduction Women Stroke – Channel’s Story

Bill Gasiamis 0:00
Before we dive in. A big thank you to Banksia Tech for supporting this episode, proud distributors of the Hanson rehab glove by Syrebo. It’s designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, and you’ll hear more about it later in the episode.

Bill Gasiamis 0:22
Links are in the YouTube description and at recoveryafterstroke.com. Now, what if the thing that was meant to help you nearly ended your life? That’s what happened to Chanell Havenga, a 35 year old industrial psychologist from South Africa.

Bill Gasiamis 0:39
For years, she battled debilitating headaches. Eventually, she agreed to a cortisone infiltration, a 15 minute procedure she never woke up from. Chanel had suffered a massive ischemic stroke. She was placed in a coma. Doctors told her family that she would likely not make her through the night, but she did, and what followed was a journey of rediscovery, from diapers, silence, and double vision to publishing her own stroke recovery book.

Bill Gasiamis 1:11
Volunteering in rehab centers and helping others find meaning in their mess. If you’ve ever felt like your identity disappeared after stroke, if you’re still struggling with neurofatigue, memory loss or emotional overload, if you’ve been dismissed, unseen or misunderstood, especially as a woman, this episode is your mirror, your map, your reminder. You are more than what you lost. You’re becoming something new. Let’s dive in. Chanell Havenga, welcome to the podcast.

Chanell Havenga 1:46
Thank you, Bill, thank you for having me.

Bill Gasiamis 1:49
Tell me a little bit about what life was like before stroke. For you, what did you do? How did you get around? What were your days like? What was family life like?

Chanell Havenga 2:02
Okay, so I was a working student. So I’ve always studied and worked to pay my studies. And I think you can imagine that’s quite hectic, keeping you busy. I was very adventurous, uh, absolute adrenaline junkie. I loved roller coasters and arts and photography, and I basically spent my life studying. So I eventually graduated my master’s degree, and I’m so happy that happened, and we finally got there, and family life was absolute fantastic.

Chanell Havenga 2:59
Absolutely fantastic. I have such a great family and support system, so everything was just really very compassionate in that aspect. Sport wise, I’ve not, I haven’t really warmed up to sports all my life, but I did find things that gave me joy, such as belly dancing, if you can believe that. And I did compete in South Africa’s. Ms. Billy Dawn South Africa. I really, really enjoyed that so much. There is something about being on stage and the adrenaline pumping. I think this is adjacent to that adrenaline junkie side of me. That is me in a nutshell.

Bill Gasiamis 4:05
Amazing. So what did you get your Masters in?

Chanell Havenga 4:09
I did my masters in industrial psychology.

Bill Gasiamis 4:13
Wow. Okay, that’s a pretty cool field, industrial psychology. How is that different from, say, General Psychology.

Speaker 1 4:22
So clinical psychology works with individuals who are going through things with trauma, basically, and you counsel and you psychologize those individuals. But industrial psychology is about working with individuals in the workspace, so everything around the workspace, how they fit in, how this is going to make the organization better, how you’re going to find a good fit between themselves and the job. So you’re not looking at those individual aspects, personal aspects. You are looking at the job itself and that person and how they fit into that.

Bill Gasiamis 5:12
I love it. Would there be a behavioral aspect to it as well, how they present in their behaviors, there is suitability for a particular role, how they engage with a team and clients, I imagine, and customers, etc.

Speaker 1 5:31
Spot on Bill. So basically, an aspect of the job that I currently have is psychometrics. So what we do is we assess candidates, or people inside the organization who are already employed and need to be developed further. So we assess them on integrity, personality, cognitive ability, and then we give feedback to them, as well as their line managers, as to the way forward, or whether they have made the cut for selection, etc.

Bill Gasiamis 6:11
I love it. I’m not a psychologist by any means, but we have a couple things in common. We’ve had a stroke each, and I’ve just recently completed a training to deliver psychometric testing for a new product, a psychometric that’s been developed by an amazing friend of mine based In the UK, and it’s about behavioral psychometric testing, and it kind of takes away from the idea of putting people in that group, where some psychometric tests do.

Bill Gasiamis 6:50
Which is, you are this, or you are that, or you are that, and then therefore labeling people and Giving them parameters, I suppose, for which they are supposed to or do behave in. So this particular psychometric we’ll talk about it at the end as well, because it’s probably not relevant to this determines how people behave, and it’s about just educating the person about their particular behavior to make them aware of particular traits that they may not have had.

Bill Gasiamis 7:24
And how those traits affect the environment they work in, either positively or negatively, and then how they interact with people, either whether there’s a positive aspects to it or some negative aspects to it. And what’s cool about it is, I did the test recently and and it’s, you know, that journey that all stroke survivors go on, especially the ones that have been on my podcast, which is to kind of develop an idea of themselves from the stroke as being kind of like the line in the sand.

Bill Gasiamis 7:55
And then I’m going to move forward and change some things improve, some things that psychometric kind of allowed me to look at it and go, Well, that is amazing to know. I now understand why certain interactions go the wrong way, and why and which part of that interaction I might be responsible for, and how I can adjust my behavior so that I behave the way I intend, which is with courage, with compassion, you know, with non judgment and a really open conversation, rather than a conversation that gets people on the wrong side of a conversation.

Bill Gasiamis 8:43
And the reason I mentioned it, I think, is because it’s relevant to how I dealt with my medical professionals and my doctors. And often we find stroke survivors will talk about how medical professionals and their behavior sometimes leaves a lot to be desired. So the more we can learn about ourselves, the better. And I just love that you do, that you’re a psychologist and you have this industrial psychological background, because that is such an amazing tool to help you with stroke recovery, I believe.

Women Stroke and Chanell’s Initial Recovery

Chanell Havenga 9:23
Yes. And just like you’ve said, Bill, the psychometric aspect of it is actually all about it’s rooted in bringing self awareness. So once you become aware of those things that might limit you or hold you back, you can make the choice to whether you want to remain as is. Are you content with life as it is and with how things pan out when you behave? Or do you want to make a conscious change? But. Can’t do so we cannot address that which we are not aware of. So we need to become aware first.

Bill Gasiamis 10:07
Guys, if you’re working on hand recovery after stroke, there’s a tool worth knowing about, the Hansen Rehab Glove by Syrebo, available through Banksia tech. It’s safe to use at home, even if your years into recovery with six therapy modes, including stretching, grasping and release and a patented mirror function, it helps retrain your brain and hands together.

Bill Gasiamis 10:32
It’s also available as a low cost assistive tech and Banksia tech ships internationally. Visit Banksiatech.com.au or check out the YouTube description and show notes at recoveryafterstroke.com to learn more. Now, let’s take a breath. You’ve just heard Chanell describe waking up and unable to speak, walk or move, completely unaware of the stroke that had just shattered her life, alone, confused, stripped of identity, and yet she chose to fight.

Bill Gasiamis 11:05
She cried for three days, and then she decided, I’m not going to feel sorry for myself. I’m going to try. If that’s where you are, somewhere between despair and decision, just know you’re not weak for feeling broken. You are strong for showing up. Let’s get back to Chanell as she reclaims her power, rewrites her story and begins again.

Identity and Existential Crisis Post-Stroke

Bill Gasiamis 11:26
Yeah, I love that. I call them blind spots. I went to counseling as soon as I I think I was maybe 10 days out of hospital, the first time I had a brain hemorrhage, I was at counseling immediately to try and wrap my head around what a happened to me, what this from an existential space? What does this all mean for my life? And then also, what can I do?

Bill Gasiamis 11:50
How do I need to change and adapt so that I can move into a space where I am taking responsibility for the things that I can and then outsourcing the skills and the responsibility for the things that I can’t to people, the professionals who I choose, and so that they can do their bit, which is keep me healthy, remove the reason for the stroke, keep me alive, send me home, so I can become wiser and a better person and better adjusted and all that kind of stuff.

Speaker 1 12:29
Well, you were very brave going 10 days post stroke to a counselor already. I didn’t have that. Yeah, that takes guts, and I commend you for that. Wow.

Bill Gasiamis 12:43
Yeah, it was the only way I could see forward. Christine and I, my wife, we had never dealt with anything like this before, so there’s no, there’s no way to wrap your head around it when you don’t have the experience and also the medical background we Christine and I were not doctors, so we don’t know anything about anything. And now you’re dealing with existential crisis, and it’s just turned up on your lap, and you didn’t have a say in it. And now you have to navigate it with a family, with children, with elderly parents that need looking after, with all sorts of things. And how do you supposed to do it on your own?

Speaker 1 13:25
Exactly as you would know your whole life turns on its head, right? Because life as you know it ceases to exist. It’s it’s basically replaced with brand spanking new everything, new perspectives, new priorities. And I don’t know if this was like it for you, but at first, I refuse to believe that anything had changed. You know that that I really wanted to believe that I was still the same person, so I pushed myself.

Chanell Havenga 14:04
Don’t know if this happened to you. You push yourself, push yourself, and you know to show and to comfort everyone and yourself even that you are still you, that you’re okay, everything’s going to be okay. And it’s like you’re trying to convince yourself and others that look, it’s still me, but I ended up learning the hard way that when you burn the candle at both ends, it’s not worth the burns that follow.

Bill Gasiamis 14:36
Yeah, it’s really tough to deal with all of the aftermath of that so it’s the identity gets impacted immediately. But we’re not used to dealing with instant identity changes. If you if I remember my time as a stroke survivor, by the time I became a podcaster, I think I had been about. So 2012 was the first incident.

Bill Gasiamis 15:02
My podcast started around 2015 somewhere like that, and I was so unwell that I wasn’t putting out too many episodes. I was just trying to squeeze them in when I could. And people would ask me, What do I do? And I would say, I do my work, and I do this and I do that. But I never said, I’m a podcaster. I only ever said sometimes I interview stroke survivors and we put it out.

Bill Gasiamis 15:25
And there has to be an amount of time and certain milestones or goals or achievements that I had ticked off before I could say I’m a podcaster, because before that, I was a painter, I was a husband, I was a dad, and I wasn’t a podcaster, and my identity I didn’t do the first episode, record it, put it live, and go, I’m a podcaster now, like it just doesn’t seem like that’s the right way to describe myself.

Bill Gasiamis 15:55
So identity takes a little bit of time to shift, and for me it took maybe 60 episodes or something before I said, I’m a podcaster. There was a body of there was a body of work. There was lots of interviews. People were interacting with them, they were helping. People were sharing them. And therefore it met the criteria that I had for when I listened to one of my favorite podcasts, and I could then relate to that favorite podcast and go, Okay, I fit all the criteria. So stroke survivors wake up in the morning after after the stroke, there’s so much to do and overcome. Identity takes a big hit and then takes a while to recover.

Speaker 1 16:42
Definitely, definitely. I think, I think that being waking up post stroke was probably and just realizing the weight of of it all and what it all means, was probably the hardest Hello that I’ve ever had to fake. I didn’t want to get to know the new me, because, according to me, I already did, or at least I thought I did, the me I’ve known for 35 years no longer existed.

Chanell Havenga 17:24
I’m sure. You know, there were tiny little fragments of me that still lingered. But have I really accepted this new version of me? And as with you, you know, have I really do. I really resonate with this new version of Chanell, and I think that is about the identity, as you’ve said, Bill our identity, you know, the who I was before, it is so closely tied to what I did, that now that I cannot do what I did at the same pace or intensity.

Chanell Havenga 18:09
I’ve I found, and I still find myself smack, bam, in the middle of an existential crisis. You know, because who the hell am I outside of what I can do? I still feel ambitious and driven. I still want to see the world on Aladdin’s magic carpet. You know, I still have those same dreams. I still want the same things, but now I have to grapple with trading in my stallion steed for Shrek’s donkey if I can put it like that.

Bill Gasiamis 18:52
I love it. Donkey is a lovable character. He does get the job done in a different way.

Speaker 1 19:01
He might go about an angle, but he gets it done, right?

Bill Gasiamis 19:05
And he’s, you know, obnoxious and, you know, he’s in your face, but he gets the job done, you know. And I love that. It’s about identifying how we can still get the job done in this different way and on a path we never chose, but now that we’re on it, we’ve got to make the most of it.

Bill Gasiamis 19:25
I love what you said, who I am, other than what I do, which is such an important question to ask, because we as at the at the party or at the pub or at the nightclub, people don’t ask you about who you are. They ask you what you do, and we identify with what we do. And then when that is not able to be done, we can’t do that anymore. Then who are we exactly? And the dive. It has to be deep.

Speaker 1 20:03
We are human beings. Bill, we are not human doings. Yeah. So you know, when people ask you, what do you? You know who you are and or you, you automatically almost jump into what you do and that doesn’t define you. And it took me probably two and a half years post stroke to realize that and to come to the conclusion of I am not what I do, if all of this is stripped away as it was, what is left of Chanell, you know, what? What meaningful contribution can I still offer the world?

Chanell Havenga 20:51
Because I wish, I really wish, sometimes I was just a lazy person content to just veg around and, you know, not worry about anything. Oh my gosh, my life would be so much easier. But I’m not. I want to always improve and be better, and then then my past version, or who I was yesterday. So I’m, always setting little goals for myself, but everything now is it’s adjusted. It looks different. And you can fight it all you want, but eventually you’ve got to come to terms with this is how it is now. And I do realize, yes, Bill, you know, it is what it is, but I’ve also come to realize that it will become what we make of it.

Bill Gasiamis 21:51
it. I love that. I love that so much. And this is what 13 years post stroke, gives you the opportunity to see what became of it, and for me, it was a podcast, a book, a massive community conversation with stroke survivors all around the world that’s incredible, right? Coaching and guiding and information, and therefore the bigger picture, which I didn’t know, which emerged from what action I took, from what behavior I took, or I attended to what behaviors I altered.

Bill Gasiamis 22:34
Well, then that’s what’s possible. And when I say that, that’s what’s possible, I Shrek. Shrek survivors will come onto the podcast. Before we get recording, they’ll say, I’m a little bit nervous about meeting you, and it’s, you know, this full on, far out thing. And it’s like, gosh, you don’t know who I am. Like, I’m just the guy who used to paint people’s houses all the time, every day, and nothing else in my life, and was cranky and angry.

Bill Gasiamis 23:00
I was just a normal guy who I just decided that it was interesting and exciting to engage with people in this way, not just at the painting of their home stage. And because I got more out of it, I did more of it, and as I did more of it, I got more out of it. And the cycle continued, and all of a sudden these things have appeared.

Bill Gasiamis 23:24
And what I did, more than anything, was I didn’t concede to my head telling me you shouldn’t do this, or the fear of, what if I do this, and somebody says we don’t like your book or your podcast is no good or and I thought, Well, I’m not going to listen to that voice anymore, which is a voice that used to run my life, and it’s probably why I became a painter, because I didn’t do the hard, the hard tasks early on that I needed to do to get me where I wanted to be.

Bill Gasiamis 24:01
That was the easy way out, and it was still a great it’s still a great way to raise a family, to create wealth, to pay your mortgage, to have a car, to go on a holiday. It does all of that, but it’s not it’s not personally fulfilling. When I paint somebody’s wall, and I walk away and they say, Thanks for painting my wall. This is me, this is purpose.

Chanell Havenga 24:29
Yes, absolutely. Um, Bill, I don’t know many people who get to start completely over. You know, like us post stroke, and yes, we may not fully recognize our reflection when we look in the mirror, but we do get to reinvent ourselves, and we do get to redesign our lives with our. Health and our health as top priority, because, as you’ve as you’ve mentioned, you know, things will probably never be the same again. Go never, ever go exactly back to before.

Chanell Havenga 25:15
But, and we don’t know this at the time, but the thing is, we will be okay. It’s just, it’s just kind of sad how we spend our lives at jobs willing to replace us in a heartbeat, right? And we bully our dreams into nothingness. But where in all of this is our own voice, where, if ever, do we stop to consider ourselves so that is so amazing that you were actually able to hush those in a you know, those inner critics that all of us have to say, You know what?

Chanell Havenga 26:06
I’m going to feel the fear and do it anyway and just look, just look at all of this incredible mess. I know that’s not a word, but it’s all of this incredibleness that you have created and that you share with like minded people. It really makes a massive difference.

Bill Gasiamis 26:31
Incredible-ing it is ongoing and continue, and continues to be, right? And it’s just simply because you know, I had, I think, you know what happened to me? I think I got lucky in the stroke, in that my mind switched off. It stopped working, that part of me, that scared guy who always listened to his negative inner voice that just switched off. I couldn’t actually access it for a while.

Chanell Havenga 27:09
Okay, okay, that is wow.

Women Stroke – Advocating for Oneself and Overcoming Obstacles

Bill Gasiamis 27:14
And then that opened the door, a door that wouldn’t have opened before, because I wouldn’t have even contemplated opening that door, because my mind would have said, No, don’t do that. We don’t do that. That’s not who you are. That’s not where you weirdos go there, or people that you don’t associate with go there, or people who are better than you go there. And that all went away. So because I couldn’t access that part of my brain, all I saw was opportunities.

Bill Gasiamis 27:40
Oh, my God, here’s another opportunity. And what I had was an amazing friend of mine who wrote the forward in my book, Michael Wilkinson. And he’s just a seed setter. He just plants seeds all day, every time you meet him, and he just plants seeds. And he was the one that planted the idea that if I’m going to help people.

Bill Gasiamis 28:01
I should do it beyond the suburb that I live in. And he said, you should do it on the internet. Online. There’s, you know, this thing called the internet. And I just looked at him and thought, Well, why would I do that? I can just go down the road and meet some people. And he says, Yeah, but how many people are you going to meet there? I said, I don’t know. There might be one or two or three. He goes, but this could get to 1000s of people, and then he stopped, and then he stopped speaking, and then he just let it marinate.

Chanell Havenga 28:31
Oh, that’s fantastic.I think we all need friends like that in our lives. Really, we do.

Bill Gasiamis 28:40
Yeah. And I lucked out. So what I’m hoping that people are getting out of this is that I am just an ordinary person. Forget about who the roles I play and the position I hold and the things that I’ve done, I am still an ordinary person, and lots of ordinary people have written books, lots of ordinary people have done amazing things, because it’s the ordinary people that we put on a pedestal and call extra ordinary, but they’re just doing things that we haven’t done, therefore we consider them better or more capable or somehow gifted to be able to do that. But it’s not about that. It they were just ordinary people, and they still are.

Speaker 1 29:35
They were brave enough to do the things we only dreamed of.

Bill Gasiamis 29:40
Perhaps, yeah, yeah, perhaps on the day of the stroke, what happened? How did you end up having a stroke?

Speaker 1 29:51
Okay, so little bit of context during my 20s, throughout my 20s. Yes, I was plagued with headaches five to seven times a week, which seriously imposed on the quality of my life. I can’t imagine that it was good for my kidneys as well having to process and break down all of the pain tablets that I was drinking at the rate that the headaches were occurring after I’ve completed my Masters, I then decided, You know what, let’s give this the much needed attention it deserves.

Chanell Havenga 30:36
So I booked an appointment and I did a few trial runs on different types of medications to see if that would work. First, absolutely no impact. And then I was booked for a 15 minute infiltration medical procedure. So this is where they would inject cortisone into the back of your neck. And the reason why they decided to do this was because they they thought that the headaches were triggered or stemmed from muscle spasms, so the cortisone would then relax the muscles.

Chanell Havenga 31:30
I did not wake up after those 15 minutes, though, and when I remained unresponsive. Hours later, and I was still in hospital, in the bed, remained unresponsive. They did. They They then made the call to send me for an MRI, and it was on the scans of the MRI that the severe ischemic stroke that I had was was discovered because my my brain, you know, when you look at the scan, the whole brain was white, so it had showed that everything had died.

Chanell Havenga 32:15
And basically the prognosis that was shared with my mom and my partner was that I was unlikely to make it through the night, and if I did, I would probably be declared brain dead. So yes, imagine being a mother and a husband and you you’re hearing the news. I can’t even Yes, I can’t even imagine that. So that is how the struggle occurred, yeah.

Bill Gasiamis 32:51
So you were going in to solve one problem, and you came out with a whole bunch of other problems.

Speaker 1 32:58
With multiple Yes.

Bill Gasiamis 33:05
So okay. Now what’s cool is that, with regards to the scan you just described, you’re sitting in front of me, and we’re having a conversation about a pot, about a a stroke, which means that, okay, so, like, the scan wasn’t as bad as it seemed to be, or it was.

Speaker 1 33:29
It was really bad. I was in a coma. I was wearing diapers at age 35 and that’s not a pretty picture. I couldn’t speak, swallow, sit, stand, walk. I had to relearn all of those things. There’s quite a few deficits that I’ve kept over from the stroke, but I believe that it really is a miracle that I am sitting here talking with you this morning or evening, and I believe that this all would not have been possible without the hand of God interfering and just saving me, and also without my support system, my incredible support system that I’m blessed with, I think things would have taken a far worse turn.

Bill Gasiamis 34:46
How many years ago was that?

Speaker 1 34:51
In August this year? It would have been it would be four years. Yes.

Bill Gasiamis 34:55
Okay, that’s amazing. Do you recall having any first thoughts? Do you recall waking up and going, what is going on? What was that like?

Speaker 1 35:09
Yes, it was. It was quite hilarious. I remember waking up and thinking to myself, I was feeling very groggy and out of it, and I remember thinking, wow. You know, no one told me that it would be like this. I never imagined the downtime for a 15 minute procedure would feel like this, and there was just nurses scurrying about, and no one made eye contact with me. I don’t know if if you also experience this, but it’s like you’re invisible the ICU, and it was also during one of the more serious waves of COVID.

Chanell Havenga 36:01
So, you know, everyone was so busy saving people, and you literally just become a number. And I think it’s also a defense mechanism on the on the part of the nurses, because they cannot really care for anyone or get attached, because so many people were dying during that time. So basically, I’m lying there. I realized, oh my gosh, I can’t speak.

Chanell Havenga 36:33
And why am I seeing double? My vision was just double. My eyes were completely squinted. And no one was telling me what was going on. And also my parents, my mom, anyone I knew, they were not able to visit me because it was COVID, and my mom works at the hospital, so she was able, thank goodness, to pull some strings and get to see me for five minutes every day.

Chanell Havenga 37:11
So that was at least, thank goodness something. But yes, only after about a few days, my mom told me, Chanel, you’ve had a stroke, and I remember feeling what like I just was in complete disbelief. I couldn’t I couldn’t believe it was just horrific.

Bill Gasiamis 37:37
It’s beyond acceptance. It’s like disbelief.

Speaker 1 37:41
Yes, absolutely, absolutely, yeah.

Bill Gasiamis 37:45
And, wow. I mean, so then what happened? How do you go through the next period of time? So you’ve discovered you’ve had a stroke. Your mum told you that, and then you’re in recovery, and we’re trying to get you back into the living world. How did that go? What was that like?

Speaker 1 38:11
So first, there was a turning point for me in rehab. So I was, I was admitted to high care for two weeks, and then I was admitted to a rehab hospital for six weeks, where I then relearned how to do everything. And I think that’s when reality finally dawned on me. You know, I wasn’t just going to get up and stroll out of rehab. This dead weight is basically what I am right now. So I cried for three days straight. Bill. I was completely inconsolable.

Chanell Havenga 38:57
No one could comfort me. I felt like a really big baby for crying. And also in rehab, they had this rule that I had to I had to choose, and you would know, you’re not really able to problem solve at that stage, I had to choose who would come to see me, my partner or my mom, because they were only allowed to see me once a week during COVID, and I threw the biggest tantrum ever and the most passive aggressive manner I could muster.

Chanell Havenga 39:46
And I threw a bit of rank, and I told them in a very groggy, throaty voice that, listen here, I am a industrial psychologist, and I could tell you, right now that it is in the best interest of the patient to have their family with them and support system. How do you expect people to recover anyway? That eventually my tantrum got escalated and escalated to, I don’t know who else, but it reached the right ears, and thankfully, my family was able to see me every day for one hour.

Chanell Havenga 40:30
So yes, I’m very thankful for that. But in those three days that I was just crying, I then realized that occasional you can go about this and make your life utter how and misery for the next six weeks, or you can just try To make the best of a very bad situation. So I refused to feel sorry for myself, and I couldn’t breathe because my nose was so blocked and red.

Chanell Havenga 41:11
You know, it wasn’t Christmas, but I was Rudolph, and with three tiny letters having a massive impact, I simply decided to try, wow, and that is where things took off. And I changed the narrative in my head, and I decided to fight back, because you cannot be released from rehab, unless you’ve met certain goals. And the goals given to me was I needed to go to the bathroom by myself.

Chanell Havenga 41:49
I needed to be able to shower myself, and I had to walk, I think it was 90 meters. And for me, those 90 meters felt like an absolute sprint at the time. However, I think that I was more like a snail, but yes, I put my head down and I focused on that, and I had a new purpose.

Bill Gasiamis 42:17
Oh, wow, I love that you did that so early on, and that you were able to advocate for yourself and be able to pull rank like that. You did that. Yes, yeah, every once in a while you have to be able to do that. Most of the time you end up part of my French when you when people pull rank, they end up looking like a dick, right? But that was the most appropriate time to do it.

Bill Gasiamis 42:42
I love it, and to have the knowledge that you had, which is really speaks then to the nurses. And I imagine one of those nurses decided, You know what? That makes complete sense. I’m going to advocate for this person. And do you know who that was? Was it somebody that that you remember, who advocated for you and did that.

Speaker 1 43:05
I have no idea. This is one of the lovely benefits of the stroke, is memory loss. So I can’t remember things before the stroke and my past, and I can’t remember certain things that happened during the stroke, it would just be blank in my mind. When I’m tired. I can’t even remember what I had for breakfast the same day. So yeah, unfortunately, not but I do remember there being a nurse, and she was a complete Angel, because she was doing a job out of compassion. You know, when you when you get people who just work for a salary, that was not her. She was different, and I was so grateful to have had her by my side.

Bill Gasiamis 44:07
Yeah, I remember there was nurses in the rehab hospital I was at, and then there was also occupational therapists and physical therapists, and the nurses were had those. You know how you said earlier that they wouldn’t even make contact, eye contact with you, etc. So, so you can imagine all the various the different spectrum of people who attend a physical rehabilitation hospital, right? There’s such a spectrum.

Bill Gasiamis 44:39
And one of the ladies, there was probably, who knows what she experienced, but she was in a diaper, and she was the lady opposite me, so when, when she had to move her bowels, everybody on the floor knew about it. But that wasn’t the worst part. That. That’s That’s probably terrible for her. It wasn’t the worst part for me.

Bill Gasiamis 45:03
The worst part for me was that they relocated the bin that held those soiled diapers in the hallway outside my door, and I was meant to eat dinner and lunch in that room, oh no, and it would smell the entire day. And I had, I had to have a number of conversations with the people who were caring for that lady, the nurses, and then escalate that to, you know, the head nurse or the manager.

Bill Gasiamis 45:39
I’m not sure who it was, but I’m in there now trying to recover from all the stuff that I got. To recover from my left side deficits. I can’t walk with my left hand properly, etc, and it’s very early days in my recovery. I’ve got a fresh scar on my head.

Bill Gasiamis 45:56
And I thought that all I had to do was say, Would it be possible to move the bins away from my from the hallway, just take them elsewhere, down the outside, down the hall or something where it’s not in the way of anybody, not next door, just out of the area. And they said no. And then I said, Well, but, but it’s uncomfortable. It’s unpleasant.

Bill Gasiamis 46:24
And then they played the but that lady is really unwell. I’m not complaining about the lady and the condition that she’s in and what she has to do and what she’s going through. What I’m all I’m asking is that bin just, can please be relocated 100 meters that way. Just get it out of the doorway. I understand your job and understand everything that you’re doing.

Bill Gasiamis 46:47
I don’t have an issue with that, but I am meant to eat here. That fell on deaf ears for a number of days, and I remember after about the third day or something like that, lunch was delivered. I wasn’t. So I would go to do my exercises, my rehab, and then I’d come back into the room to rest, have lunch, and then more rehab, and then that cycle would repeat, lunch.

Bill Gasiamis 47:12
Lunch came, and I put myself in my wheelchair, I rolled myself to the front desk, and I invited the nurses to come to my room with me, to have lunch with me. And they looked at me and they said, why? I said, just, just come. Just bring your lunch and just come and have lunch with me. You know you’ll just say you can experience what I experience, exactly.

Bill Gasiamis 47:39
And then they were like, What are you experiencing? I’ve been complaining about it for three days, and I understand the difficulty of the nature of the situation and the job. I totally get that, but that is not the right place to store that kind of waste. I’m sure there are rules around that, and the rules are not to store that waste in any public space where people can access it, infections, all that kind of stuff, I’m sure.

Bill Gasiamis 48:06
So, yeah, eventually I won that little battle, and they moved it down the road and the the and then there was one less drama for everyone to have to deal with. But that thing does happen, and I, I was like, You, I was pulling rank because I did the victim. I’m the victim here, and you have to make my life comfortable here to help me heal. My recovery goes well, and then I get out of here. That’s the whole reason why I’m here.

Speaker 1 48:40
Yes, it’s but being, being the victim, being in such a position, almost by default, we are overlooked, you know? So it’s like your voice doesn’t really matter. And the first thing I thought of, and then you said, You’ve done it was, I would, in that situation, I would, I think what you did was genius. Invite them, you know, come just, just experience it.

Chanell Havenga 49:20
Because people who are not in your shoes, yeah, it’s so difficult for them to really walk in your shoes and experience what you’re experiencing. I would have probably said, Would you like to go have your lunch next to the bin? Then you you get to see what, what, what it is all about. But I like the strategy that you employed.

Chanell Havenga 49:45
I think that was far more effective at getting them to play along. But isn’t that, what is the word? Isn’t that almost kind. Characteristic of of being a stroke survivor is that no one really gets it unless you’ve lived it. No one really knows what you’re going through. You can explain it until you’re blue in your face, but it’s it’s not the same for someone who has not survived the stroke.

Bill Gasiamis 50:26
Yeah, it is. And also it’s a blessing that I don’t know what’s going on, and the only thing I hope is that people who have going through a stroke have enough presence. Of their mind to be able to advocate for themselves, even in small ways, if it’s just for something minor or major that they can do that that’s really if you can, if they have to lose everything else, but not that thing, that that would be amazing.

Bill Gasiamis 51:01
When I was first diagnosed, I was in the hospital, and the doctors would come to the end of my bed in a team talk about me and then leave, yes, never talk to me. And I had a friend of mine who was at another hospital as a radiographer, and I said to him, you need to get me out of here. These people are not including me in the conversation.

Bill Gasiamis 51:22
I can’t be passive in this conversation. You need to find, yeah, you need to find me a a team of doctors that will listen. And of course, he found me the most amazing team. And basically did the deal before I even had to do anything. And then when I went there, all I did was meet the new team, the new doctor, and she’s an amazing lady, and now she’s the head of neuro neurosurgery in the Royal Melbourne Hospital, Kate professor, Kate Drummond.

Bill Gasiamis 51:53
And if it wasn’t, if it wasn’t for that, you know, I didn’t need the addition. You don’t need the additional aggravation in in that condition. When you’re in that condition, you need things to go if, if they’ve never gone smoothly for you up until that day, you need them to go smoothly from here on and and I’m just glad that, you know, we get opportunity to talk about this and raise awareness for people so that they can feel comfortable to advocate for themselves every step of the way.

Speaker 1 52:29
Absolutely. Bill, you also asked me, How is life now? You know, how was it during, during the stroke and the recovery? And I’m, I don’t want to assume things, but I’m, I’m probably gaging that you went through similar motions and one of, one of those things that rears its very ugly head is guilt.

Chanell Havenga 53:05
So yes, you know it’s like there’s a fine balance between advocating for yourself, standing up for yourself, and then feeling that guilt, because nothing can prepare you for the guilt. You know no one tells you that you are going to cry buckets full of crushing pressure. You know the guilt of being too slow, the guilt of holding other people back, the guilt of being a burden.

Chanel’s Journey to Publication and Advocacy

Chanell Havenga 53:36
You have to kind of juggle that, but then you also have to juggle that with having grace with yourself, right, and being kind to yourself. And I would, when told this news, I would usually roll my eyes, because what is there to be kind about? I just want to get back to normal or the normal that I knew, but it’s tough to it’s tough to say these words when the recipient is you.

Chanell Havenga 54:11
You know, we are our own best critics. But I, I believe that if if I had only known the sooner, you know, I might have applied it sooner. And I believe you need to start with you. You need to forgive you. You know, I’m sorry that I don’t feel like adulting today. I’m sorry for being mean to me, you know, I’m sorry. I’m so tired all the time, and I’m sorry that I feel like I’ve stopped being a person and started becoming a problem, you know.

Chanell Havenga 54:56
So it’s such a delicate little balance and dance between. In guilt and being mean to yourself and not having grace with yourself, that’s what I experienced, and then the deficits that I kept over from the stroke the biggest one bill would be neurofatigue, because it it infiltrates into every little aspect of your life, literally, it impacts on every single thing I now also have extreme auditory sensitivity, so I have noise canceling headphones at work.

Chanell Havenga 55:50
I have little I actually heard you interview another podcast person, a stroke survivor, and you were talking about little earplugs, and I went and googled them, and I ordered them immediately. And I’m so thankful, because they work like a dream.

Chanell Havenga 56:14
It just takes the edge off, you know, just the noise. And yes, so I have that. I have my noise canceling headphones. I wear permanent glasses with special prism lenses to help with my balance. So no Unfortunately, I cannot do belly dance at the same level that I used to, because I cannot turn my head and we, you know, there would be a lot of head spins.

Chanell Havenga 56:46
I can’t turn around at the same pace, because then I’d look like a little baby elephant. You know, not having balance, I have difficulty regulating my body temperature on the left side of my body, so weird, my foot and my leg is always cold, always memory loss, as You know, sleep apnea, because apparently your throat muscles become lazy.

Chanell Havenga 57:24
They relax when you’ve had a stroke, so it’s like a straw that you bend and the air can’t flow through. So sleep apnea, basically no oxygen to the brain. Then also, I’m only able to work until 2pm in the afternoon because my productivity and accuracy nose dives after after that time, you can’t get anything out of me, which is so impressive that you are having this podcast at that time of day, that that you are having it, um, because I was working out the time difference from South African Australian like, Oh my gosh. How are you even still awake?

Bill Gasiamis 58:17
I’ll tell you, it’s early in the morning here, so you may have worked that out incorrectly. So it’s just shifted over, it’s just shifted over to mid day where it’s 1:30pm so that’s okay, however I everything you described. I’ve been through exactly all those things, stopping work at a given time. That was not my choice.

Bill Gasiamis 58:47
Was a common thing. My left side deficits are the same cold, much colder than my right side. I even sweat less on my left side compared to my right side. Wow. So that was weird one day to go and wipe my forehead of sweat and to realize that there was no sweat on this side of my forehead, just on this side. That was so bizarre.

Speaker 1 59:15
Do you also experience aphasia and slurring of your speech when you get tired.

Bill Gasiamis 59:25
I don’t, but my wife will sometimes, I’ll start a sentence, and she’ll sometimes wait for the answer, and she’ll be going spit it out, you know. And I’ll be like, don’t rush me, you know, be nice, don’t tell me to spit it out. Yeah, and it’s sometimes the cogs turn a little slower, but it’s not a big challenge. People don’t really notice it if I do it in the right context, if I’m on stage and doing it, people think I’m just a deep thinker.

Chanell Havenga 59:56
Yes, it’s intentional.

Bill Gasiamis 59:59
Yeah. Yeah, so I just play. I play the game.

Speaker 1 1:00:05
So I literally look like a inebriated, drunk person when I get tired, because my speech starts slurring. I don’t talk any sense. I actually start bumping into things.

Bill Gasiamis 1:00:25
Especially my left side. If I’m walking next to somebody, I tend to run into them all the time. I’m not sure why. They just become magnetic.

Chanell Havenga 1:00:34
Yeah, exactly. I like that. They become magnetic.

Bill Gasiamis 1:00:40
So it’s their fault, not mine. And then what has happened is, they have all got better. The cognitive fatigue has improved. The ability to focus on a screen for longer has improved. My productivity has improved, but I’ve but I’ve made a lot of changes. I don’t smoke, I don’t drink, I don’t eat barely any carbs, so I don’t do the things that are a high load on the brain and its energy levels.

Bill Gasiamis 1:01:08
And I try to make sure that I’m supplementing with things that I need to supplement. I’ve got a couple of other issues. I have a thyroid issue. Just a few days ago, I was diagnosed with high blood pressure, so there’s a lot of things that you can do to support the brain to heal further and become more efficient, but you just have to do it regularly now, but you you committed to your recovery in therapy. So tell me about that. What does that look like four years later, this commitment to recovering, and what have you changed? Or what are you doing, and what have you stopped doing?

Chanell Havenga 1:01:49
Wow, I have really started living like I don’t want to die almost again. I’ve prioritized my health because I figured, you know, you’ve been given a second chance at life, and I have scaled down significantly bill with most things you know, at first you you just push yourself and you want to convince yourself that you still can and it’s still you and you haven’t lost yourself or your identity.

Chanell Havenga 1:02:35
And then you burn out multiple times until you realize, okay, this is just a never ending loop. It’s not going to end unless you end it. So I’ve decided to really stop literally and smile the roses, to pace myself. You know, fatigue isn’t it isn’t only triggered physically so too much stimulation and mental those things are hot on its heels.

Chanell Havenga 1:03:14
Also, I’ve realized that the brain cannot cope when it has too many tabs open, too many distractions and things happening, stress, especially also it takes the brain away from recovery, because now it’s busy with coping with that stress. So yes, i and i also something that really helped me, Bill is the occupational therapy homework that I got. It has helped me immensely, and it was journaling, and that is how I I wrote and published a book called My Stroke of Luck.

Bill Gasiamis 1:04:04
Yes, you have a copy of it there?

Speaker 1 1:04:20
This is my book, and it it has really helped me bill, because I was able to put to paper what was going on. And the reason you know what sparked this is I was journaling just during my recovery early days, though, and I happened to read an entry to my partner, and he said to me, You know what? You should really do something with this, because it’s not like a pity party.

Chanell Havenga 1:04:56
You write humorously, but you don’t. You know, an Afrikaans, we have a saying that we say, you get drawing in a dukies Omni so basically, I’m not Willy Wonka. I don’t sugarcoat things, so I tell it as it is, but I do so in a in a humorous way. And that’s when I decided to really go for it and write this book I also, which also helps me is I volunteer at a stroke rehabilitation hospital.

Chanell Havenga 1:05:44
And the whole thing about the book is I want to raise and apply funds to assist stroke survivors in any way my capacity allows, because I believe that too many people are suffering silence, and too few are aware of this, and I believe it can be changed. So I felt like my book is deemed for a cause. It’s it’s, my book is for a cause deemed worthy of trying, and this is what I want to achieve.

Chanell Havenga 1:06:30
I also rose Stroke Awareness on radio, and I shared my story and how book readings at hospitals. So in terms of what I’m doing now is I really want to make a difference in Stroke Awareness, and in that regard, I think Bill, you are my idol and my hero, because you have done what I think has brought such a massive difference to so many people’s lives. And you know, that is the goal that I would love to to reach as well.

Bill Gasiamis 1:07:26
I love it. Yeah, so one of the the last chapter of my book, is stumbling into purpose, and it starts off. And the reason I it’s called that, is because I didn’t set out to find my purpose and meaning. It’s not what I did, but I volunteered. I volunteered in 2013, a year after my first and second bleed, and I still wasn’t well.

Bill Gasiamis 1:07:58
You know, had another bleed to come, and I had brain surgery to come. I still wasn’t well, and I volunteered to the Stroke Foundation, and I went to the community, and I spoke about stroke and I raised awareness. Recently, I became the voice of a Stroke campaign here in Australia. Previously, I’ve lent my face to the I don’t know why they chose my face, but they chose my face, and they used it on their pamphlets and on some of their social media.

Bill Gasiamis 1:08:25
And what that was, was the beginning of the podcast, because the podcast was a volunteer kind of role. It was free. You didn’t have to pay for it or anything like that. In fact, it cost me money to put out. Yeah, and what happened was, it was during the podcast interview, I think around episode 40, when I said to another stroke survivor, I think I’ve found my purpose, and that came to me. It wasn’t what I set out to do, but it came from helping others.

Bill Gasiamis 1:08:59
And if you want your life to improve dramatically, even though you can’t walk move, your identity has changed, and all those things happen, even all of that stuff has happened. If you want your chat, your life to improve dramatically, help somebody else, beautiful, that’s it, and that helping somebody else can start simply by sharing a book, a podcast, a story, by reaching out to responding to their Facebook post and saying, I hear you, I see you, I understand you.

Bill Gasiamis 1:09:37
You don’t have to attend a particular location or anything like that. You just have to make it about I’m going to improve the life of the lives of other people. And your husband, he planted the seed. Your partner planted the seed, like my friend Michael, and that was all that it needed. And wouldn’t you believe it like that little seed sprouted and it became this thing, and that is.

Bill Gasiamis 1:09:59
So that’s the gift of of stroke. Like I know people who are early on, perhaps, and doing it a lot tougher than we did, might not see it right now, right yet, but if you can find the way to ask yourself, what is good about this? Well, let me tell you, if you don’t know anything, that’s good about anything is that, if you survived a stroke in 2025 that’s what’s good about it, because 50 years ago, that stroke that you experienced, that you survived, may not have been a survivable one. And then go from there.

Speaker 1 1:10:45
I remember being in rehab and just wishing that, you know, I had some sort of guidance, something to just guide me and to tell me how things might be, what I might expect, you know, what is the forecast, you know, for the future? Is it normal for me to feel like this is Is there something wrong with me, other than, you know, not being able to walk and and so forth.

Chanell Havenga 1:11:23
And that would that’s another reason why I wrote my book, is because it, it was essentially the diary I had wished I had, and I wanted, I wanted to have other stroke survivors feel less alone in in all of, all of everything that’s just going on in their lives right now, because it’s no one tells you, it’s a mental struggle as well. You know, you you think, Okay, let me.

Chanell Havenga 1:11:58
Let me just get through these physical deficits, let me just do physio and biokinetics and and all of those things and tick, tick, tick it off my list. But no one tells you that when, when you focus on that actually on the back burner. You really need to look at your emotions. You cannot defer that. It’s it’s creeping up there, and it’s going to come and you’re going to have to deal with that.

Chanell Havenga 1:12:36
But that was the that was the furthest thing from my mind. Um, so it’s not all sunshine and roses, you know, sometimes it’s just thorns, and you have to, you have to be prepared for that, and that is why I wanted to put my book out there. Um, because it’s literally diary entries of me during my recovery. And at the end, I also thought, you know, this might actually not be a bad idea, because my attention span in the beginning was zero.

Chanell Havenga 1:13:22
I wasn’t able to read more than one or two pages at a time, and the diary entries that I have is literally a page, you know. So. And I also want to actually start a an audio book for stroke survivors, because of of my book, because when I was in hospital, I was also going blind, and stroke survivors might find it difficult to read um, but Then at least they could listen.

Bill Gasiamis 1:14:02
That’s some of the feedback I’ve had. And I tell you what guys the hardest thing to do for me is sit down and read a script of a book and make it sound something worth listening to. It is so difficult to to gain the skill to read something and then make it sound conversational and flow. I can have a conversation forever, but reading the book is really hard, and I’ve had it requested, but I can’t seem to get it out.

Emotional and Mental Recovery Post-Stroke

Bill Gasiamis 1:14:37
Now. I will one day, but I can’t at the moment, but I would encourage you, if you can, to find, find a way to get that done, because people are missing out, because I haven’t got a an audio version, but they have the podcast, and pretty much everything that the book shares, the podcast pretty much does share. We talk about all those topics all the time. I’m thankful for that.

Bill Gasiamis 1:15:03
I wanted to as we start to wrap up, but before we do, I want to ask you a little bit about psychology. Now, you mentioned that you cannot go about your recovery with the physical only. There’s, I have like a triangle of stroke recovery, physical, emotional, and I’m going to call it mental. Now, emotional is the psychology part, and I’ll tell you why.

Bill Gasiamis 1:15:31
And mental is the the cognitive behavioral therapy part, and physical is the obvious physical part. One of the things that I think is occurring in the field of psychology. The counseling side of psychology is the word is associated with the head and the actual word, the etymology of the word is, psychology is, see here is Psych and lawyer is logic, the logos and I feel like the counselors and the psychologists that I’ve been to amazing as they are, and they’re both women, by the way, the ones that I had chosen.

Bill Gasiamis 1:16:11
They do the emotional part really, really well. But I feel there’s a little bit of a disconnect between the actual meaning of the word psychology and how it’s applied, because I feel like it’s applied only and the majority of the time consciously to the head and not enough of the emotional, heart based psych type of stuff is occurring. Now. Is that just me? Or would you agree with that statement? Or do you think it’s not like that?

Speaker 1 1:16:48
I do hear what you’re saying. Bill, I haven’t had that experience. I also had to see psychologists and counselors, and it would almost seem the inverse of what you’re saying, so they focus mostly on emotion and what you’re going through. So it was almost never for me about cognitive things, unless I wanted to go there okay and discuss those things, but then they would always turn it back to Okay. But you know, at the risk of sounding like a cliche, how does that make you feel?

Chanell Havenga 1:17:42
You know, so it would always, it would always go back to the emotion and what it stirs inside of you. And you know, we, we often try and rationalize things and think about things, and this is why it’s not cognitive. So whenever you say, I think, I think I feel like this and this, no, no, no, no, don’t think. Just feel. You know what you feel. So, um, yes, I I do hear what you’re saying, but I myself haven’t had that experience. I wish maybe a little bit more of thinking and less of feeling, because I think I’m tired of talking about my feelings by now, but yes.

Bill Gasiamis 1:18:44
I love what you just said. I think I’m tired about talking about my feelings, the feelings. Though, talking about your feelings brings much more relief than thinking that I’m tired about talking the feelings. So there is a thing as cognitive behavioral therapy, but there isn’t a thing as emotional behavioral therapy. Or is there?

Chanell Havenga 1:19:02
Not, that I know of emotional behavioral therapy would be trauma counseling, um, sessions, you know, if you, if you want to box it like that, it’s, it would, it would be looking at specific traumas and all that that entails.

Bill Gasiamis 1:19:20
Yeah, but if you think about, if we do think about behavioral, cognitive behavioral therapy, it is a field that teaches you how your thinking may be flawed and how you might be able to adjust it so that it is less flawed, and it helps you meet the outcomes of your life, whatever they are, or the outcome of the session, the outcome of the interaction with the human being that you’re having trouble with, whatever it is, right?

Bill Gasiamis 1:19:47
Well, emotional behavioral therapy would be something similar. You would attend to the behavior of your to the outcome of your emotional behavior, and you could then attend to how to adjust it. Alter it, comprehend it in a way which would support a better relationship, a better job environment, a better a better experience with yourself, a better way to deal with your stroke experience and not that, how you’re dealing with it is not okay, or it’s not right.

Bill Gasiamis 1:20:20
It is perfectly okay let me tell you that right now, if that’s what you’re going through, but it’s always about kind of saying, okay, is this serving me or not? My thinking wasn’t serving me. That’s why I went to counseling, and what it was doing to me. It was causing emotional turmoil, and my emotions were the were the symptom, and people would see my emotions, but it was the thinking that was triggering the incorrect path to that emotion.

Bill Gasiamis 1:20:50
And then once I altered my thinking and realized what I’m doing is I’m because my biggest challenge when I was in my mid 20s was that all my problems, where everybody else is doing and making had problems with my parents, it was them. I had problems with my brother, it was him. I had problems with my partner. It was her.

Bill Gasiamis 1:21:10
And then what happened was I started to learn that my thinking might have been out of whack, and as a result, all my emotional experiences, the bad ones lessen than the good ones heightened. I got less emotional about stuff, and therefore my outbursts were less ridiculous and and there was no unnecessary ones. And then I started to be able to connect with people a little better and not judge them for their lack.

Chanell Havenga 1:21:42
Yes, yes. I think that is why cognitive behavioral therapy people is is so emphasized, because our thoughts inform our behaviors, right? So you have this stimulus and response and something happens and you react, you respond immediately.

Chanell Havenga 1:22:05
But if you think about intentionally, think about adding a filter, a pause in between, you’re going to have your stimulus and you’re going to change your course of action by just responding, you’re going to just add a brief pause there and a filter through which you can see, okay, this is not going to help me. It’s not going to be productive in any way. Let me choose a different course of action. And I think that is why the focus is so much on the cognitive behavioral therapy, because our thoughts literally shape how we act.

Bill Gasiamis 1:22:52
I love that, it’s a question I’ve been keen to ask for a long time because, because it’s kind of because I just thought I think about things a little bit more deeply these days. I was just trying to get my head around it and understand, at the same time why there is a bit of a neglect of the emotional recovery in stroke, why people seem to omit it.

Bill Gasiamis 1:23:19
And even if you’re going to omit it during physical therapy or even counseling at the moment, at the time, there should be just somebody saying, by the way, once we’ve done dealing with that, let’s also there’s this other area we need to consider. So at some point when that comes up, just know that maybe you haven’t dealt with it yet, or we need to deal with it, or wanted to discuss it.

Adjusting to a New Normal and Finding Purpose

Chanell Havenga 1:23:45
Exactly. I have always been into fantasy books, Harry Potter and and so forth, and I remember being in rehab and thinking about Alice in Wonderland, and she once said that she couldn’t return to yesterday because she was a different person back then, and it really resonated with me. Had such a big impact, because I try to convince myself that I’m okay and that things will go back to exactly the way they were before.

Chanell Havenga 1:24:33
You know you you kind of lie to yourself because you’re denying what has happened. But the truth is, Bill, there is pre stroke and there is post stroke, and we are never going back to before, so maybe Alice was onto something. After all, you know, I still love fantasy. Books, but I also have more of an affinity for practical documentaries, you know, things like that. So in that sense, my my tastes have changed in terms of literature.

Reflecting on Personal Growth and Change

Bill Gasiamis 1:25:21
Are you thinking about practical application of the things that you’re learning, how they are applicable in life, or just as a general concept, practical?

Chanell Havenga 1:25:33
I think both Yes, probably the former more.

Bill Gasiamis 1:25:39
Are you finding yourself like seeking, requiring, having more of a need for that type of information now?

Chanell Havenga 1:25:53
Yes, yes. I think it depends on the mindset that I’m in, because sometimes you you have a need to escape and to just, you know, jump into this fantasy world and just forget about things for a while. But I think, like I always had this amazing dream to go to the Harry Potter world Universal Studios, and it’s been on my bucket list since probably 20.

Chanell Havenga 1:26:31
I’ve been 20, and I’ve saved up to go to exactly that. But after the stroke, things changed for me, and I don’t know, I think, I think I almost felt like, you can do number one, you can do so much more to help stroke survivors with that money, it almost seems foolish to go and, you know, do something silly on the side. And number two, that that didn’t it no longer really interested me.

Chanell Havenga 1:27:15
And I don’t know if you can see my my bookcase behind me, it is full of Harry Potter things. So to say that I was an avid fan would be an understatement, but that literally changed like this. It just wasn’t a priority for me to go anymore. And I, I’m not, I’m not even watching the films anymore. I did try after the stroke, but I got bored, weirdly, weirdly enough I would never say this out loud.

Bill Gasiamis 1:28:02
It sounds like you’ve just changed, you know, from your that’s a new it’s a different season, you know. So, yes, your willingness to be, to escape, to be into something that got you out of the situation that you found yourself in, at work, at home, in life, has lessened. It seems like you have grown accustomed to being a little braver, focusing on what you’re challenged by, learning how to overcome that, how to share and support other people going through that.

Bill Gasiamis 1:28:41
Which means you can’t be disconnected from you can’t have cognitive dissonance from your situation, because things wouldn’t wouldn’t improve for you, and it wouldn’t allow you to help improve other people. So I found myself in a similar way. I spent a lot of time. I did a massive deep dive for almost a decade into all the things that I could do to help people myself overcome stroke, be better, etc, the book happened.

Bill Gasiamis 1:29:11
And then once the book happened, my desire to learn more and more and more has kind of eased, and it only picked up when other people who watch the podcast and listen to the podcast sent a message saying, Can you comment on this intervention? Can you comment on this supplement? Because now I have a reason to comment on something medical or a supplement or an intervention, and I can study it for a little bit, make a video about it seven to 10 minutes.

Bill Gasiamis 1:29:45
It’s done, and then I’m done with needing to know that. And what I found myself doing recently is sitting in front of the TV in one of the many subscription TV movie subscription things, and looking for old movies. I grew up with, and that made me feel in awe of a situation. So firstly, if you want to experience Awe, I highly suggest doing it in nature, going into a temple or an amazing cathedral, and go there and become awe inspired.

Bill Gasiamis 1:30:16
But the things that gave me awe as a child, like, you know, from a 10-year-old, were movies like Raiders of the Lost Ark, you know, Harrison Ford, and those types of movies which were just epic and just the most amazing adventures. And I see those, and I and, and it’s, you know, obviously, very Hollywood, but it’s a different kind of it’s not a shoot ’em up action, just the ridiculous amount of guns flying. It’s a hero’s journey.

Bill Gasiamis 1:30:47
It is a story about somebody who’s going through tough times. They they find themselves with all these obstacles. They overcome them, they find the solution, they implement it, and then they they live happily ever after, so to speak.

Bill Gasiamis 1:31:04
Yes, I find myself going back to those types of movies to try and relate to or associate as that type of character, a character who goes through what they’ve been through, but regardless of what’s coming up, high blood pressure, whatever the next thing is, it’s like, okay, well, we’ll tackle that as well. We’ll work it out, and we’ll, we’ll overcome and we’ll, we’ll rise again, and until we can no longer. And then, and then the job’s done.

Speaker 1 1:31:39
Yes, and to, just to add to what you’ve said, Bill, I think this quote, My favorite quote is, so it’s so fitting to what you’ve just said, and it is my favorite quote is, make like a lighthouse and shine. So yes, I believe that you know, we do adjust to our situation as you’ve adjusted and you find comfort in and that story where this character is evolving, you know, and going through all of these trials and tribulations and coming out on the other side, and he’s okay, and you are able to resonate with that.

Chanell Havenga 1:32:35
And I think it’s important for us to find comfort in in those little things. And haven’t you noticed? It’s, it’s also a bit like the little things in life that we, you know, you read about it. Oh, it’s the little things in life that are actually the big things. But I feel like we as stroke survivors get to live that, you know, because it actually is the little things once, once all of the other things that are basic have been taken away from you, then you realize how massively big those little things actually are.

Bill Gasiamis 1:33:18
Yeah, thank you so much for joining me on the podcast and reaching out. I really appreciate it. And at the end of the in the show notes will be links to all your social media, your book, etc. And I’ll encourage people to go along and have a look at those and reach out to you as well. It’s lovely to meet you. Thank you so much.

Speaker 1 1:33:45
It’s been so so great to meet you, Bill. And I’m so thankful for this opportunity. I really am. You are so inspiring. You really, really are and I want to encourage you to please keep doing what you’re doing. I don’t think, I mean, I think you can, but I don’t think you can even fathom the difference this really makes. So thank you for having me.

Bill Gasiamis 1:34:15
My pleasure, I really cannot fathom the difference that it makes, I cannot grapple, I cannot wrap my head around it. It’s I just cannot, and I don’t want to. I don’t need to. All I know is I am on a mission to get to 1000 episodes. Thank you for being one of them.

Chanell Havenga 1:34:36
You are most welcome. Thank you, Bill.

Bill Gasiamis 1:34:40
Before we wrap up another thank you to Banksia Tech for supporting this episode and making stroke rehab tools like the Hanson Rehab Glove by Syrebo accessible for more stroke survivors. If hand movement is part of your recovery, this glove might help visit banksiatech.com.au, or use the links in the show notes and. YouTube description. Now let’s reflect on what we just heard.

Bill Gasiamis 1:35:04
Chanell didn’t just survive a massive stroke. She lived through a complete identity collapse and started over. She turned her journals into a published book. She helped other stroke survivors in South Africa find hope, and she’s reminding us that, and she’s reminding us all that even when your body feels foreign and your mind feels lost, there is a new version of you waiting to be born.

Bill Gasiamis 1:35:29
Healing isn’t just physical, it’s emotional, mental and existential. And while this path isn’t easy, you don’t have to walk it alone. If this podcast has supported you in any way, and you’d like to help me reach 1000 stroke survivor interviews. Please consider supporting the show on Patreon. Your support helps keep this project alive, covering the cost of editing publishing and continuing to amplify real recovery stories like Chanel’s.

Bill Gasiamis 1:35:57
And if you’d like to explore more stories of transformation. Check out my book, The unexpected way that a stroke became the best thing that happened, written by a survivor. For survivors, you’ll find the link in the show notes and the YouTube description, until next time, keep enduring, keep becoming and remember you’re not just recovering, you’re rebuilding.

Intro 1:36:20
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all.

Intro 1:36:37
Content on this website and any linked blog podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.

Intro 1:36:59
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 1:37:14
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.

Intro 1:37:39
Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there.

The post From Coma to Clarity: A Young Woman’s Stroke, Recovery, and Redefining Herself appeared first on Recovery After Stroke.

Stroke in Pregnancy: How Emily Rebuilt Her Life 17 Years Later

When Emily Sarah Gable had a stroke at 26, she was pregnant with her second child. She was also in the thick of early motherhood, navigating life with a 15-month-old at home. What should’ve been a time of joyful anticipation turned into a medical and emotional crisis she never saw coming.

Her stroke was an ischemic clot to the cerebellum, causing vertigo, vomiting, loss of balance, facial paralysis, and sensory changes across her body. At the time, no one knew how to respond to a stroke in pregnancy. She was shuffled between hospital departments. Misdiagnosed. Even told she might lose the baby.

But she didn’t. And 17 years later, she’s here to share what happened next.

Why This Story Matters

I first spoke with Emily back in Episode 65. Now, more than 350 episodes in, she returns to reflect on the journey most people don’t talk about: the long arc of healing after the immediate danger is gone.

Emily doesn’t just speak to what happened to her. She speaks to what happened within her.

This episode is about more than just recovery; it’s about rediscovery. It’s about becoming. And it’s a powerful reminder that even when it feels like everything is falling apart, something deeper might be falling into place.

Stroke in Pregnancy: A Rare but Life-Altering Event

Most people don’t realize strokes can happen in pregnancy. Even fewer know what it’s like to live through one.

Emily was misdiagnosed with preeclampsia. Interns told her the baby wouldn’t make it. She was put through magnesium treatments unnecessarily. Her care was inconsistent, and her body didn’t feel like her own anymore.

She couldn’t swallow. Couldn’t walk. Couldn’t feel temperature on half her body. Yet, somehow, she gave birth naturally at 37 weeks. Her son arrived healthy. And only then did the healing truly begin.

The Path to Healing: Slow, Nonlinear, and Deeply Transformative

Emily’s story reminds us that recovery is never just physical. It’s emotional. It’s spiritual. It’s personal.

She found her way back through movement. Through fascia-based healing. Through Iyengar yoga. Through touch, breath, and learning how to feel her body again.

Eventually, she became a certified massage therapist, yoga and Pilates teacher, and bodyworker, all because she wanted to share the healing that helped her feel alive again.

“I Had to Relearn How to Be in My Body”

One of the most powerful moments in our conversation was when Emily shared what it felt like to sit on a soft ball in yoga class — and fall off. Over and over.

But she kept going.

That ball became a metaphor for her recovery. For rebalancing. For trusting her body again.

And maybe that’s the most powerful part of her story: she didn’t just recover. She transformed.

What You’ll Take Away from This Episode

• Hope — that healing is still possible, even if it’s been years since your stroke
• Insight — into what it’s like to have a stroke in pregnancy and recover while parenting
• Strength — to advocate for yourself when medical systems fall short
• Compassion — for your younger self, your body, and the people around you
• Perspective — that even after trauma, it’s possible to build a life with meaning, purpose, and connection

For Stroke Survivors and Caregivers Alike

Whether you’re a stroke survivor, a caregiver, or someone supporting a loved one, this episode is an invitation to slow down and breathe to reflect, reconnect, and imagine what recovery could look like.

Recovery isn’t linear. It isn’t fast. But with the right support, the right people, and the right perspective it can be powerful.

Finding Strength After a Stroke in Pregnancy: Emily’s 17-Year Healing Journey

Emily had a stroke while pregnant at 26. 17 years later, she opens up about healing, motherhood, and how she found strength after the chaos.

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Highlights:

00:00 The Initial Symptoms
07:07 Stroke In Pregnancy and Misdiagnosis
13:54 Birth Experience and Early Recovery
20:23 Journey to Healing and Self-Discovery
26:41 Personal Growth and Relationship Changes
33:35 Perspective on Breath and Healing
40:07 Emily’s Reflections on Life Post-Stroke
52:59 Health Journey and Blood Pressure Issues
59:01 Emily’s Experience with Beta Blockers and Stroke
1:05:52 Lyme Disease Diagnosis and Treatment
1:18:07 The Importance of Self-Compassion and Support
1:24:35 The Role of Community and Support in Recovery
1:36:55 Therapy and Rehabilitation in Recovery
1:43:04 The Importance of Self-Care and Mindfulness
1:49:44 Technology and Tools in Recovery

Transcript:

Introduction And Initial Symptoms

Bill Gasiamis 0:00
Before we dive in a quick thank you to Banksia Tech for supporting this episode, proud distributors of the Hanson rehab glove by Syrebo, which is what I’m wearing right now. It’s designed to help improve hand movement and function at home, whether you’re early in recovery or years down the line, you’ll hear more about it later in the episode.

Bill Gasiamis 0:25
Links are in the YouTube description and in the show notes at recoveryafterstroke.com. Today’s story is a rare one, but also one that more people are starting to search for. What happens when you have a stroke in pregnancy. Emily Sarah Gable was 26 pregnant with her second child and still caring for a toddler, when a blood clot hit her cerebellum.

Bill Gasiamis 0:50
What followed was vertigo, vomiting, facial paralysis, sensory loss and the terrifying uncertainty of whether her baby or she would make it through. She was misdiagnosed, sent through maternity, cardiac and stroke care with no clear plan. She couldn’t swallow, couldn’t walk, and yet, somehow, she gave birth safely, and then began a 17 year journey of rebuilding from the inside out.

Bill Gasiamis 1:16
This episode is about more than survival. It’s about what comes after. It’s about how trauma can transform and how healing doesn’t end after the hospital discharge. If you’re navigating stroke recovery while parenting, if you have ever felt unseen, or if you’re years out and still searching for meaning, Emily’s story is a powerful reminder that it’s never too late to grow. Let’s get into it. Emily Sarah Gable, welcome to the podcast.

Emily Gable 1:46
Thank you.

Bill Gasiamis 1:49
Welcome back, actually, last time we chatted was around six years ago, Episode 65 we are beyond 350. Episodes right now.

Emily Gable 2:01
Wow, that’s amazing. Thank you.

Bill Gasiamis 2:04
That’s a lot of stroke stories. And I remember at the beginning, I had to reach out, finding the stroke survivors, dragging them over the line to get them onto a podcast, because of all the challenges that stroke causes, and the podcast was fairly new. Stroke Recovery type podcasts were fairly new back then and I never expected to get to 350 episodes.

Bill Gasiamis 2:34
And what I never thought about was getting somebody back after six years to talk about the journey beyond that first part of the story you know, and to recap your story a little, maybe I’ll ask you, rather than sort of tell the audience what I think it was about, tell us a little bit about what stroke, what life was like before stroke at the very beginning, and then when the stroke happened, and then what life was like after the stroke happened, because it was a very complicated time in your life. Not only did you have a stroke, there was a whole bunch of other stuff going.

Emily Gable 3:18
Well, I don’t actually quite remember my life before stroke. It’s really hard for me to recall, except that I know that I was frustrated and unhappy in my life, and I would not have admitted that at the time, but looking back at it, I definitely was and I had a let’s see. When I had my stroke, my daughter was 15 months old, and I’d had a really beautiful home birth with her, no complications.

Emily Gable 3:57
And then my grandfather passed away. We went to the funeral in the beginning of May. This was 2008 and on the trip home, it was a plane ride and a two hour car ride to get home. I had really intense vertigo in the airport, to the point where I couldn’t move and thought I was going to be sick. And I was like, and I’d had vertigo before, but that was different that time.

Emily Gable 4:31
And I was like, No, and I and I had midwives, I brought it up to them, and they’re like, well, you have more blood in your body because you’re pregnant, I don’t know if I said that I was pregnant again. So I was due in September. My daughter would have been, like, 20 months old when new baby was born, and then two weeks after we got back, I was in the shower I started spinning, the vertigo feeling for some reason, I grabbed all my clothes, ran to the bed, started vomiting into this pile of dirty clothes.

Emily Gable 5:15
And that was a stroke, I had a blood clot in my cerebellum. I had an ischemic stroke just to the right of center in my cerebellum, so it affected my primary functions of swallowing, urinating. I had the right side of my face affected and the left side of my body, so my right eye has some deficiencies. I can’t tear. I couldn’t, I couldn’t. I didn’t know all the scope of what was going on at the time, but it turned out, in the end, couldn’t tear.

Emily Gable 5:55
I can’t wear contacts anymore. I used to wear contacts, but I’m totally over that one, because I can’t feel the surface of my eyeball. So if there were to be anything under the contact to scratch my eye, because I don’t tear, I wouldn’t feel it. So they were like, just don’t wear contacts again, please, for your own eye health, and I had to relearn how to walk, because I had no sensation of pain or discomfort on my left side.

Emily Gable 6:29
So it was like this different kind of sensory experience walking. I also couldn’t feel I can’t feel temperature and like, wet and cold, which actually is a temperature thing. So when you like, put your hand in the dryer to see if your clothes are still damp, I don’t know, with my left hand, everything feels the same to me. So I have to use my right hand. And even then I’m like, help me out here, I like, just put it in longer or, I just guess, and take out wet clothes.

Stroke In Pregnancy and Misdiagnosis

Emily Gable 7:07
So my experience in the hospital was two weeks in the hospital and two weeks in a rehab hospital. I was pregnant with the stroke. So they’d had no idea where to put me. They put me in the maternity unit. They put me in the cardiac unit. They put me in the I went back to the labor and delivery. I went back to the I think I went back to like they didn’t have a stroke floor.

Emily Gable 7:40
So I underwent a lot of abuse from the medical system at a lot of inappropriate comments from doctors and interns. I was misdiagnosed with preeclampsia by an intern. Given I talked about this in that episode, I was given a day’s worth of magnesium infusion and told I was going to have a C section and a premature baby who probably wouldn’t live. None of it happened. I didn’t have preeclampsia, so I had to kind of process all of that BS while I was like, what’s happening inside of my body, or I didn’t process it.

Emily Gable 8:24
I don’t know if I talked about this, but I also my father was a raging alcoholic, and he came into the hospital. I remember the night that I had the magnesium treatment, and he came in after visiting hours drunk and, like, held my hand. He’s like, It should be me in here, it should be me. And I was like, What the hell come on, dude. So that was another layer on top of that, where I have this, like, really irresponsible, belligerent father, and I thought I was a healthy person here, like completely debilitated and hospitalized. You know, you go through the why? Me? It’s not fair stuff, and that was part of it.

Bill Gasiamis 9:11
Fair enough, going through all of that stuff, and you’re pregnant at the same time, and you have a stroke, and your regular life continues, and you can’t get a pause on your regular life just so you can deal with a stroke. I mean, it’s too much for anyone to, yeah, for sure, and it feels like it’s, you know, death by 1000 cuts.

Bill Gasiamis 9:36
You know, you don’t realize you’re in that situation until you’re in that situation, and then it’s too much, and then it just becomes overwhelming, because it’s so many things that were just I was unhappy. I had a baby at home. I had another baby on the way. I had a dysfunctional relationship with my father.

Bill Gasiamis 10:01
I had terrible treatment by the medical professionals, and all at a time where all you need is support, encouragement. You don’t need any of the other drama. You need somebody to help you make sure your baby’s healthy, the other one at home is okay, and the delivery goes okay, and then you’re okay, your health and well being is going to be okay in your and it’s just too much to handle.

Bill Gasiamis 10:30
And you know, I always reflect on the the part of stroke that we actually don’t have the skills and are not equipped to deal with things like that, the first time that happened to us, because we’ve maybe got away scot free for the majority of our lives, up until that moment, and then all of a sudden, you know, the will, the walls start closing in, and it’s no, no, I can’t have all this other rubbish happen. I just need to deal with this one thing.

Bill Gasiamis 11:03
But you had no choice yet to deal with the stroke and the birth of your baby and your and your other daughter and your daughter who was 20 months old, yeah, and how old are you if you’re working on improving hand function during your stroke recovery. There’s a tool that might help the Hanson glove by Syrebo, which is what I’m wearing right now, available from Banksia Tech.

Bill Gasiamis 11:31
It’s designed for Safe at Home Use whether you’re just starting rehab or years down the track. The glove features six therapy modes, including stretching, grasping, release and a mirror glove function that lets your stronger hand guide your affected one. It’s also available as a low cost assistive technology through various funding streams.

Bill Gasiamis 11:54
To learn more, visit Banksiatech.com.au, or check out the YouTube description and show notes at recoveryafterstroke.com. Now let’s take a moment. You’ve just heard Emily describe the instant everything changed. One minute she was in the shower. The next, her world was spinning. Her body was failing, and she was alone with a toddler, pregnant and terrified.

Bill Gasiamis 12:18
If you’ve ever had that moment where your body suddenly stopped working, where fear crept in faster than answers. You’re not broken. You’re in the middle of a storm, and like Emily, you’re not the same person who walked into that moment. You’re someone who is learning how to rise again, not just physically, but emotionally and spiritually too. Let’s get back to Emily as she begins to reclaim her strength, her sense of self and what healing really means 17 years later.

Bill Gasiamis 12:48
I was 20, I had my 27th birthday. 26th birthday in the hospital. Yeah, I was young,

Bill Gasiamis 12:55
And pardon my French, but at that stage, we pretty dumb as, yeah, for sure, as as adults anyway, because yeah, barely out of your teenage years, and you’re, and I’m, when I say your I’m talking about me, and yeah, your father, everybody, yeah, you’re a parent, you’re doing all these things, you’re taking all this responsibility. And I feel like there isn’t a smooth transition into adulthood.

Birth Experience and Early Stroke in Pregnancy Recovery

Bill Gasiamis 13:23
All of a sudden you become 18, you’re an adult according to the law, and perhaps because of circumstances your life. Some people would have had to grow up a lot earlier because of their circumstances at home, etc. But for me, I was so naive, so silly, so dumb at that age where I was just winging it, just trying to find a way to get through and it and that I remember that being probably one of the most stressful times in my life, this pretending that I was better or more capable or more knowledgeable than I was at 25.

Bill Gasiamis 14:01
And then feeling like I don’t have anyone else to go to for wisdom, even though my parents were really cool, they just didn’t have, they didn’t have Melbourne, you know, 1996 wisdom that I needed. They came from Greece, in another era, you know, for you know, from parents who went through World Wars and you know that they didn’t understand the the troubles and the challenges that we faced, you know, back then and even today, you know, they had a different mindset, a different idea of what it meant to endure challenges and problems and problems and all that kind of stuff.

Bill Gasiamis 14:43
So I can’t imagine what it was like to be in your shoes. What’s cool about it is, even through all of that stuff that you were going on, that you were going through at that moment, you found a way through. You still found a way through. So this is what I love about sharing these stories, is that what hopefully we’re going to do is paint a picture to people who are listening, who are early on, the walls are closing in around you, and you want hope that there is a way through. There is going to be an opening somewhere, right? So how did, how did the birth actually go? After all of the drama, how did the birth go?

Bill Gasiamis 15:26
So I ended up back in the hospital. I had another intense spell of vertigo. They put me on blood thinners, which nowadays are inexpensive, the ones that they had prescribed, but they had just come on the market, so it was like 3000 US dollars a month to be on these injectable Lovenox, which I think now is probably free, but at the time it was cutting edge.

Emily Gable 15:52
Was like a low molecular weight won’t affect the baby, blood thinner because and stable. The other one that they put me on afterwards was Coumadin, which is less stable, so they wanted to make sure that my whatever, the blood thinners were working. So they basically, when I went back into the hospital, they said you need to be on bed rest.

Emily Gable 16:15
And I was 36 weeks pregnant, and this is so fresh in my mind, because I just told someone the story earlier today, who asked me, I was 36 weeks pregnant. I went they said, you could be on bed rest, you could go home, but you absolutely cannot do anything except like, Get up and go to the bathroom. And I was like, like, you know, if you went and stayed in the hospital, you know, there’s better chance that you’ll be, you know, we’d like to, we’d like to monitor you.

Emily Gable 16:47
And I was like, that sounds like a better idea, because I have, you know, a child and a dog at home, and I know that I won’t be able to sit still. So I checked back in the hospital, waited for a week, and then they induced me. And my husband had given me a bunch of acupressure to induce labor, and he had started that. But the wasn’t it wasn’t happening fast enough for the doctors.

Emily Gable 17:15
You know, they got a schedule, they got it, they got to open the bed so they gave me misoprostol, which dilates the cervix, which is actually something I think they use in aborting a pregnancy. But they were, you know, like, evacuate the baby, it’s time, you know, he’s cooked enough. They waited till I was 37 weeks. Ideally, it would have been 38 but they were like, we need the bed.

Emily Gable 17:39
So 37 weeks I delivered him vaginally. I had had an experience of the home birth with no drugs or anything like totally natural. And this one was with Pitocin. I had a bag of Pitocin, which is like, I don’t know what they think it does, but it made a hell, because usually when you have contractions, it’s like this slow wave building up and it peaks and then slowly goes down.

Emily Gable 18:13
And with Pitocin, it’s like, peak done, peak done. There’s no gradual anything so that I did not like but I was in labor for 23 hours, and I’d been in labor for 23 hours with my previous child, so it wasn’t like shocked about that, and he came out real quick when I was ready to push. He came right out because he was tiny and he was healthy, and that’s when I was able to start healing from the stroke.

Emily Gable 18:45
Because I’d my body was growing a child, so it wasn’t able to be like, what does she need? You know, brain what is, what is your nervous system need? So after I gave birth, I started having, like, a increase in symptoms, like more spells of vertigo, more feelings of like extreme temperature changes.

Emily Gable 19:14
I don’t feel any of that anymore, but it was a little scary at first, but it was my body responding, like trying to, I this is what, I think it was all the neural pathways re Rerouting. It was like, Where, where is it blocked? Where can we go? I had gotten my feeding to add a feeding tube, and they had taken it out the end of July.

Emily Gable 19:41
So I had it from May 23 until the end of July, and I had already been swallowing for like, three weeks before it got taken outside, three weeks where I had this tube coming out of my stomach that was filling with the food that I’d been swallowing. It was really gross. Um. Yeah, so it, it’s, I feel like I’m still very much in the thick of the energetic healing from that, from my solar plexus having a hole punched in it.

Journey to Healing and Self-Discovery

Bill Gasiamis 20:15
I can relate to that. Because, you know, people ask me about the podcast. You know, your 350 episodes, they get excited. Wow, whatever. I’m not done talking about this thing. Like, yeah, I know that I’m inviting other people to share their story, but part of the reason for that is because I need to have the conversation. And I just stopped talking about it.

Bill Gasiamis 20:39
My whole entire life revolves around what happened to me, and not that it stops me from getting through life or achieving what I need to achieve in life. But it’s all consuming. It never goes away. I never forget what it was like. I never wake up in the morning and the symptoms and the deficits are not there, like everything is linked and connected so and for me, it’s been since 2012 I’ve been going through this, the first bleed when, what year was that, when the baby was born and you had the Stroke? 2008.

Emily Gable 21:21
And my niece was born May 17, and I had the stroke may 23 so there was, like a newborn in my family, and it was like a celebration. And then, you know, I have this events, and I like feel terrible, because I want that attention to be for this new life in our family.

Bill Gasiamis 21:51
You become the center of attention. And kind of makes sense. It’s been a sweet moment with a new birth, and then we’ve got to deal with illness and other parts of life that’s unexpected, right? So, yeah, people pause the excitement, perhaps, of having that new life into the world. And they’re all focused on you, which, you know, it’s logical, completely, totally logical makes sense. But I see what you’re saying. You’re kind of feeling like you stole the thunder a little bit.

Emily Gable 22:31
Yeah, and that wasn’t, obviously, I would rather have not had a stroke. That would have been nice. But, you know, also, at this point in my life, I’m like, I wouldn’t, I don’t wish any of it didn’t happen. I am exactly where I need to be right now, because that happens.

Bill Gasiamis 22:47
That’s an interesting comment, because people listen now again. And I wrote a book that is titled The unexpected way that a stroke became the best thing that happened. But people going through stroke now would and very understandably go, What are you talking about? How is that possible? And I don’t feel that right now, and I never felt that at the beginning either.

Bill Gasiamis 23:12
I didn’t feel that for the first three years or four years when I’m bleeding, yeah, and need brain surgery. Need to learn how to walk again and wake up with deficits. There’s no way I felt that. But why did you say that you wouldn’t change anything? What? What have been? It sounds like there’s been learnings, um, lessons and growth. Tell me about it.

Emily Gable 23:38
Yeah. So excuse me, I, you know, I had to relearn how to be in my body again. I had no idea what, where I was like. How did like? I was mad at my body. How could you have deceived me? How could you have done this to me? I thought that I was in control, like my brain, my soul, whatever. I thought that I had control of this stuff. You know, I eat well, exercise like, what did I do? Why did this happen?

Emily Gable 24:09
And then so I lost trust. I had to rebuild trust. I had to rebuild physical functions again. So I went to a geriatric yoga class, and I because I was like, okay, like, maybe I can keep up with the, you know, the pace of that. So I went, and it was, like, packed. I put myself in the back of the room, against the wall. I tried to do some balancing stuff, holding, like, against the wall.

Emily Gable 24:38
And I was like, yeah, there’s something to this for me right now. I need this kind of thing, but I don’t want to be in a class with 30 people. I want to be one on one with somebody. So I the town I lived in, I sought out a yoga teacher that was highly recommended, who did iyengar yoga, and I made an appointment talk to her about my. Situation, went to her and she goes, sit on this ball.

Emily Gable 25:03
And I was like, what? And she’s like, I want you to sit on this ball. And it was this, like, it’s like the size of a soccer ball that was inflated, and it was like, kind of soft, kind of squishy, filled with air. I couldn’t sit on. It took me a month, once a week of going to her to be able to sit on it and not fly off immediately, because I was in constant state of vertigo for until December.

Emily Gable 25:26
So my stroke was in May. December is when it finally my neural pathways figured out something else and I wasn’t in constant vertigo. So it was really challenging for me to do that, and then slowly, I started to move on top of the ball and feel things like what is happening with my body on this round object. And I learned how to feel my body in a way that I’d never knew possible.

Emily Gable 25:59
And I don’t know what I felt before the stroke. Honestly, in my body, I wasn’t paying that much attention to it. I just did things, you know, you kind of take it for granted, like, yeah, I can walk what? What’s the big deal? And then you can’t. And then you go, how do I do that? So this was actually a practice called Yamana body rolling. And I worked with this woman for four years, the my teacher in Maine.

Personal Growth and Relationship Changes After Stroke in Pregnancy

Emily Gable 26:31
Her name was Mariana, and I ended up training to become a teacher in this technique, because I felt like it had impacted me in such a positive way, I wanted to learn how to teach it and share it with as many people as possible. So, you know, if I hadn’t had that stroke, I wouldn’t have found that.

Emily Gable 26:54
So I found that, and then with that came many different modalities, footwork, working with people on a table, working on the face, TMJ issues, all the joints and that and I have broken bones from when I was early my 20s were, excuse my language. Can I curse? Yeah, a shit show, a shit show for my body. Like, I broke bones. I had a stroke, like, just I got it all over with my 20s.

Emily Gable 27:25
I have metal in my arm. I had pins and screws and metal in my ankle. So I had past injuries that I was like, Oh my gosh, this is helping that. So we moved to Mexico. I did a lot of hands on stuff with people there. Open my own studio because it was very inexpensive. So I was able to kind of practice on people there. They’re not litigious, like they are in the US.

Emily Gable 27:53
So I was able to, like, put my hands on people, and they weren’t like, Why are you touching me? They were like, everyone was like, great, this is awesome. So then we moved back to the US, I realized that I needed to be, like, official, to put my hands on people. So I went to massage school and discovered that I I love being a massage therapist. Like, that’s my that’s my jam, like, in addition to the other things.

Emily Gable 28:23
So I got my massage license. I’ve been licensed for seven years, and then I keep learning. I got my Pilates teacher certification, and now I’m working with this group called the human garage. They have a huge social media presence, and they do something called facial maneuvers, and it’s a way for people to learn how to release the fascia, the tension in their bodies themselves.

Emily Gable 28:49
So everything I’ve learned is kind of about empowering the individual to heal themselves, and it all started with my own healing journey after the stroke. So if I hadn’t had the stroke, I don’t know that this would have happened.

Bill Gasiamis 29:05
I say something similar to you in that, you know, podcast, I wrote a book speaking all that stuff, all because of the stroke. It definitely is, and it’s like a sliding doors moment. And I haven’t been able to reconcile this with myself yet either. If I hadn’t had the stroke, I don’t know whether I would have been wise enough to do the amazing things that I’ve done.

Bill Gasiamis 29:38
I think I would have continued down the same old, challenging, difficult, frustrated, annoyed, upset, angry path that I was on, angry at everybody, everyone else was the problem, you know, yelling at the kids for nothing, for being, you know, teenagers. Is probably not the best, you know, my wife might not, she might not agree in that she probably wouldn’t reveal.

Bill Gasiamis 30:12
But not the best, supportive, most amazing husband ever, you know, probably a little bit cranky and idiotic every so often. And it’s like, did really have, did I really have to go through this to grow up, grow a brain, become wiser, do things for other people, find my meaning and my purpose, really? I was I that stupid that I wouldn’t have done that beforehand, and unfortunately, I think the answer is yes.

Bill Gasiamis 30:46
That I don’t think I would have gone down this other path. I think I just would have continued trying to hurt all through space, get to the other end of it, be happy, but having done nothing to actually influence my happiness in the positive way. I didn’t think I would have done anything and just sort of got, got there and gone. What this is it?

Emily Gable 31:11
Yeah, there’s also some things that I feel like I experienced having a stroke that in our culture of, I mean, my, my, my Instagram algorithm shows me all sorts of like people who do psychedelic drugs in lots of Pilates And like things, body work stuff, and then mind, mind mind altering stuff. But I’ve never been drawn to do the mind altering stuff, because I feel like I was tripping the whole time I had a stroke. I don’t know what that feels like with the drugs, but I’m like there was some alternate reality happening for me there.

Bill Gasiamis 32:01
Feels very similar. So when I was tripping on a stroke brain, after the strokes, after the bleeds and all that kind of stuff, and then since then, when I have had an experience with mushrooms or two, it is very similar. And the only difference is, I have been able to while on a mushroom trip, is you seem to have some sort of conscious awareness if you’re the right kind of person, because some people don’t do psychedelics.

Bill Gasiamis 32:34
Well, if you’re the right kind of person, and you go into it with the right mindset, you have some kind of awareness that you’re willingly in the situation that you find yourself in, that it has a short time frame, that it’ll end, and when you get out of it, you’ll be back to quote, “normal” Was not what I felt when I was tripping. Stroke, yeah, tripping because of the stroke.

Bill Gasiamis 33:02
Did not feel that at all. I didn’t know why it was happening, how was happening, why I found myself there. Is it going to end? Am I going to get better? What if it stays like this? You know, I couldn’t, I couldn’t answer any of those questions. And that was scary, yeah, that was the difference. That was scary. This was not and, yeah, and, and I think that’s what.

Perspective on Breath and Healing

Bill Gasiamis 33:28
And being able to go to somewhere alternate, an alternate reality, for a short amount of time willingly is similar to what a ultra marathon runner will do, who decides I’m going to wake up in the morning and run and do 1000 kilometers, miles, kilometers, whatever, for the next five days and sleep two hours a day for the whole time. It’s, it’s like a it’s, you’ve, signed up for it’s very different, but we didn’t sign up for stroke.

Emily Gable 34:05
Exactly, that’s I fully agree with that, that it, I didn’t realize that, until recently, that this was a similar kind of thing as these, as psychedelics. I had a friend explaining her experience to me with, I don’t remember what drug it was, some, you know, a mind altering substance. And she started to talk about it, and I had to stop.

Emily Gable 34:32
And I was like, I was crying. And I was like, honestly, this sounds like when I have my stroke, except that you knew that it was going to end, and I did not know what the hell was going on and when it was going to end. And I couldn’t listen to this like, because there wasn’t the ability to control anything, and I didn’t have the consciousness of like, this will be over at some point. I was just like, What is going on?

Emily Gable 34:58
And all I could do was breathe, and, you know, yeah, I was throwing up, just like the people on ayahuasca, but I was throwing up and I didn’t know if that was ever going to stop. And when you’re when people do that stuff, they’re like, Oh, it’ll be however many hours, or whatever it is, yeah.

Emily Gable 35:16
So I feel like I had my own. I didn’t, I didn’t identify this until, like, maybe a year ago, I had my own near death experience, and gave me a lot of insight that I didn’t realize everyone doesn’t not have. And, yeah, that was that, when I had that realization, I was like, Oh, my goodness, oh, my god. I can’t believe that this is my perspective now.

Emily Gable 35:48
And I didn’t even realize I’ve been walking around for 16 years, not realizing that that was a huge, kind of like a huge, life altering journey, to put it in their words, of those people, the of the of that experience. But it was, it was the stroke that that did that, and I, I think the way I got through it was the support I had around me, you know, my husband, the people I didn’t know that were in my community that came and stepped up and brought food to everybody.

Emily Gable 36:30
I couldn’t swallow, so they brought food for him and my daughter. You know, my family, despite, you know, despite my dad, everyone else was really supportive, yeah. And so one thing I wanted to say is that it empowered me. It took me a long time, but it empowered me to find my voice.

Emily Gable 36:53
So one of the things that happened when I had the stroke was I really like my voice weakened because I wasn’t able to swallow, and I think it affected the muscles in general in my throat, so my voice got really weak. There was that physical but the energetic of like, what is it that I need? What is it that I want? What are the things that work for me in life?

Emily Gable 37:19
And when COVID happened in 2020 and I think we talked in 2019 so when COVID happened in 2020 it was, it was a intense, I think everyone went inward quite a bit, it seems. And afterwards I got a divorce, and I am very amicably, split up with my we were married for 17 years. We’re really good friends. We live a mile apart. We co parent our kids.

Emily Gable 37:49
My daughter just graduated high school, and we’re friends with each other’s partners currently. And I just needed to be like that. You know, we trauma bonded big time over the stroke, and that was very toxic, and we both recognized that there were lots of things, but that was like, what kind of held us together? Was this shared memory.

Emily Gable 38:16
And one thing I don’t know if I ever mentioned, was that we got together, and I got pregnant after we’ve been together for a month. So I didn’t even know this guy for two years. When I had my stroke, it hadn’t even been two years that I knew him and I had a baby and a stroke.

Bill Gasiamis 38:36
He hit the jackpot.

Emily Gable 38:40
And then he’s there, like, taking care of all of us. Because he should have just run away, you know, everyone was like, Dude, he’s awesome. He stayed around, but, you know, he stayed around. So I was like, wow, this is this guy’s awesome, you know.

Bill Gasiamis 38:54
And he was awesome. And he is awesome, but the thing about it is, if he’s at the same age as you.

Emily Gable 39:01
He was younger, he was 23

Bill Gasiamis 39:05
Well, if he’s 23 he’s just as dumb as, yeah, you and I were at the same age, because I was a dad at 22 just a month after My 22nd birthday. And then I’m thinking, you know he now, he was a teenager five years ago. He was in school five years ago. Right now, he’s a parent of a child with a woman he’s met a month ago and now is dealing with a stroke survivor.

Bill Gasiamis 39:40
But who has time for all of that stuff at 23 no one knows what the hell they’re doing at 23 let alone how to manage all of that stuff. Now, I did the same thing that he did. I stuck around when I got my girlfriend back, my girlfriend back then pregnant, we became married, and we’re still together.

Emily’s Reflections on Life Post-Stroke in Pregnancy

Bill Gasiamis 40:00
And for me, it was there was no second thought. But what it did do is it put my growth, my life, my learning, my shifting from one phase to the next on hold. That’s what it did. So when I got to 37 if it wasn’t for the stroke i That’s why I don’t think I would have woken up. I would have just continued going, Oh my God.

Bill Gasiamis 40:30
Because after my son was born in 96 our second son was born in 2000 so I’m just going hammer and tongs work as many jobs as I can, as many hours as I can, for as little or as much as I can, and do everything I can just to keep a roof over my wife’s head, my boy’s head, and gonna pay the bills and make sure the credit card works and all that kind of stuff, there was no time for Me.

Bill Gasiamis 40:57
My only downtime was to disconnect through alcohol or a joint, having a marijuana joint back then, that was the only way that I could disconnect from all the stuff that I had to endure and put up with that I had no skills to deal with, because I never, I never developed the skills. I was just thrown into the deep end and it was sink or swim, and there was, I couldn’t let down three other people.

Bill Gasiamis 41:24
It would have been terrible. So I did everything I could that I thought was the right thing. The you know, the examples I had was my mum and dad. They just worked forever. My mom stopped working when she couldn’t work anymore, because she had a really bad back. That was it. And then dad and then dad worked as much as he could to achieve exactly the same thing for us that I was now achieving trying to achieve for my kids.

Bill Gasiamis 41:54
When my dad came from a from a country where there was no opportunity to work. They had to leave because there wasn’t an opportunity to make money and work. You could work the farm and the field, but they would have been totally poor the entire time if they stayed there. So they left, and when they had the opportunity to work for them, it’s like all their dreams come true, abundance of work, high paid, low paid didn’t matter.

Bill Gasiamis 42:23
They if you had the right attitude and you asked enough people, you could find a job type of thing. And that was what my dad did. And I remember, you know, he worked shift work. And I remember when I got to about the age of 18, in the job that he did. He was a waterside worker where they unload cargo freight from cargo ships.

Bill Gasiamis 42:49
And he said to me, you’ve got an opportunity if you want to the way that they hired the next generation of employees was through family, and they just said, if you want to get a job, there’s jobs going, just go put your name down, and you’ll get called up, you’ll have a job. And I looked at him and thought, shift work? Are you insane? Why would I go do shift work for I mean, I’m going to be working when I’m supposed to be sleeping.

Bill Gasiamis 43:14
And he would, he was doing that for 20 years. Wow. Coming home sleeping at 7am when we’re waking up, making noise, you know, being annoying kids and all that kind of stuff. He just put up with it all. He did not bat an oily did not complain, he did not whinge. All he did was get up every morning and meet his obligations and I could tell you that my dad is not spiritually connected in tune.

Bill Gasiamis 43:43
My dad is not, I wouldn’t call him wise. He’s not a wiser elder that you go to. He’s a smart guy, and he he’s done great things, but you can’t go to him for emotional support because he doesn’t do he doesn’t do emotions.

Bill Gasiamis 43:58
So that’s how I learned, and I tried to implement that, but implementing that with my upbringing, which was such a cushy, comfortable upbringing compared to what he went through, my there was a disconnect in my soul to my reality, and My soul is going, I don’t know another way. I don’t have another another mentor. I don’t have somebody else to guide me, to shine the light.

Bill Gasiamis 44:29
Do what you know, what you learned. And my soul’s going, don’t do that, don’t do that. And my my brain’s going, that’s the only thing we know how to do. Do that. And it was so difficult to get there your husband. I can’t imagine his story. I don’t know his background, but what I love about it is that since you’ve separated, you guys obviously have been able to experience personal growth, both of you, and it’s a testament to both of you that you’ve been able to.

Bill Gasiamis 45:00
It separate. Realize that you can go a separate your separate ways, find new partners and still be amazing parents and and be kind to each other and love each other and not be what you hear about most of the time with divorce is terrible, yeah, lawyer situations and yeah, arguments, and who’s going to get the VCR and all this dumb shit that, yeah, not really about.

Bill Gasiamis 45:27
It’s, you know, it’s, I love that you guys have been able to find your own path, separately, and that’s brilliant, and even though you started off, well, let’s face it, like the way that you guys got together and married and the way that I got together, we’re pushing shit uphill. We’re behind the eight ball. It’s technically not meant to work out at all. Like, yeah, when you start in a western democracy like that, you know, you’re almost screwed from the beginning, and you’re pushing shit uphill the whole entire time.

Emily Gable 46:11
Yeah and I, you know, our kids came into our lives, and I know I’ve become very spiritual since my stroke. Because I don’t know how you don’t, I mean, you know, when you, when you have a near death experience, it’s kind of like something’s going to happen. So I really feel like my, our, my, our kids picked us. You know, that feels so true to me, and they recognize that my daughter and I talk about it, and they are the most loving kind human beings, these kids.

Emily Gable 46:50
And I really don’t think we have that much say over the behavior of our children. I mean, like to a certain extent, but they are great humans, and we lucked out, you know, we got some good ones because I’ve, I’ve met some parents that are really awesome people, and they just have really unruly children, and they’re like, I don’t know, I don’t know what happened.

Emily Gable 46:50
Like, it’s, you know, they come in with their own agendas, you know, and they teach us a lot. And I’m just so grateful that my kids continue to teach me so much and that they’re so loving, because that’s really what I mean. We showed them that they saw that, and they’re just full of they’re just so full of love. I feel kind of like high from that.

Emily Gable 46:50
I just, I gave my daughter a massage this afternoon. So it just, it feels, it fills me up to be connected to her in that way. And she’s been getting massages since she was an infant. So she’s like, you know, I put my hand on her, and she grabs it, and she makes me massage her. Like, even in passing, my son is. He’s always very ticklish, so he’s not as much into that, but he gives the best hugs. And he’s now taller than me. He’s like, six foot tall, of course. So instead of my little boy, he’s my big little boy.

Bill Gasiamis 48:17
I was encouraged by the fact of how forgiving kids could be. Like I wasn’t a terrible dad or anything, but I was properly cranky, you know, and I used to misbehave as a parent, and I used to think that I was the I’m the top of the food chain. You guys all need to toe the line, and you need to be quiet, and you need to do what I say and and it never went well, you know, they’re both right, so I should be guiding them, not dragging them along the path, you know, and making them fit my criteria for how men should behave.

Bill Gasiamis 49:01
You know, they’re different than me, so one of the blessings that came from my stroke was that opportunity to deal with what I thought was my bad behavior, apologize for it profusely, like all the time over the next few years, because I thought I might die and not be around, and I didn’t want him to remember me as a cranky bastard and and now, as adults, as a 25 year old and a 29 year old, we have the best relationship we have developed.

Bill Gasiamis 49:39
It has become better and better, after all the drama that I went through, but it was one of my one of my goals, I suppose, to ensure that I re, re assessed everything in my life, especially my. Relationships, and then went out of my way to correct what I was responsible for, not their behavior. I didn’t, I didn’t, and I didn’t expect them to step up and correct their behavior or do anything.

Bill Gasiamis 50:12
All I did was just became the example of somebody who realized that perhaps they were wrong in some instances, and therefore altered, altered the path, and changed the the way that he behaved, reacted, responded, spoke, etc, and that led them to me, led them to come back like on their own.

Bill Gasiamis 50:34
I didn’t need to drag that’s awesome. So, you know, it is amazing. And it sounds like you’ve had and this is what I love about people who come and share their learnings about strokers, even in your ignorance as a youngster in your 20s, and me, in my ignorance, somehow, it was the perfect springboard to get us here.

Bill Gasiamis 51:04
Even though I described myself as being dumb and unwise and all those things in my 20s, and I say it from a loving kindness, kind of like I’m trying to play it down. I don’t want to be hard on myself when I say that about my past self, but it was the perfect springboard to get me to this stage where you and I are talking about these things that have worked out.

Emily Gable 51:33
Yeah, it feels like there’s I see little messages and signs and everything. Now, not to get really cliche, but I’m like, well, it’s like the sliding doors, and I see it all the time, like every day. Now, like, Okay, that didn’t happen for a reason. What does that mean for me? Maybe it doesn’t happen every day, but when things like that do happen, I’m like, there’s some reason why, you know, the power went out and I couldn’t use my computer, you know, and I, instead, I did this other thing, and these things happened.

Emily Gable 52:15
And I feel like it’s been opening me up to receiving the messages of the universe, basically, um, I wanted to tell you about when I interviewed with you the first time. I didn’t listen to it until I was my my dad died. I had to go. He was in Mexico. I got a phone call from his friend, and I was, it was, it was Labor Day weekend. And I was like, This is it, isn’t it? And he’s like, I don’t no, no, no.

Health Journey and Blood Pressure Issues

Emily Gable 52:52
And I’m like, yeah, he’s gonna die, isn’t he? Like, soon, and I’m the only person, like, I’m I’m it, I’m the only family. I’m his only child who was going to step up and do anything. So I flew to Mexico, like right away. It was a long trip. Whatever I did, all the stuff, watched him die. It took, took, like five days. He was liver kidney failure, he filled up with fluids.

Emily Gable 53:20
Was moaning the whole time. I don’t want to die like that. I’d rather have an accident. I’ve had enough time in bed. I don’t need a long suffering, you know? I’d rather, actually rather, like I’d rather just not wake up one night. You know, I don’t need to suffer. I’ve spent enough time on my back in a bed. I don’t need to be longer on out anything. You know what I’m talking about, like, just I put in, I put in my hours. I’m good, that’s it.

Emily Gable 53:53
Anyway, I so then I had to clean up his stuff, and when I flew home, I was like, I’m gonna listen to that podcast episode now. Like, why? Then? Because I was, I was talking to my boyfriend about this last night. I love to listen to heavy shit during heavy times in my life, like, I’ll watch some tragic movie at a tragic time in my life. So I was like, Let me listen to that podcast episode I did back in May.

Emily Gable 54:27
And I think it took a little bit to get it out, but it had been a while out for a while, so I got it on, and I’m listening to it. And I had to transfer planes, so I don’t think I listened to all of it in one sitting, and I get onto the last plane back to I had to fly to Newark, New Jersey, which is not a good airport anymore, but I then had to drive two hours home after that, so it’s going to be a really long day. So I was sitting on the plane next to this guy named Bill from Melbourne, Australia.

Emily Gable 55:01
He was going to visit his Well, he was actually from Pennsylvania, from this little, tiny town in the mountains where my aunt and uncle lived, like, like, fifth population 50. And he and I knew it. I knew the town and his and I had just been listening to, like this podcast with you, Bill in Melbourne, and then it was like, I sat next to this guy, and they’d been traveling all day from Australia, and they were in their last leg.

Emily Gable 55:32
It was like, Texas to New Jersey. And yeah, he and we got to talking, and I’m sitting there in the airplane seat. My dad’s ashes are in a bag underneath the plane, and and, and that I was just like, whoa. Like, this was meant to be, that I hopped on this flight, and all of it lined up so little like things like that, where it’s this huge sign to me of I’m in the right place at the right time. That happens to me a lot when I went because I My eyes are open to it.

Bill Gasiamis 56:06
I love that story. That’s such an amazing story. Your what you’re I think what you’re describing is, you know, when you said, the lights went out and we don’t have any lights, and it’s dark, and I was on my computer working, and now I can’t work. And what does that mean? That willingness to ask, what else could this mean than just what a pain in the ass the lights, you know, that willingness to ask, what does it?

Bill Gasiamis 56:40
What else could this mean? It could mean I’ve got more time to sit next to my daughter. I’ve got more time to read a book. I can I have a memory of that day when the lights went out and everyone was running around looking for candles, you know, like, whatever it is. I think these things happen in life, to, uh, to give us the opportunity to ask.

Bill Gasiamis 57:06
What else could this mean? If only you know, to ask the question? I think the biggest challenge that I had as a younger person was I didn’t know that there’s this really cool question you can ask for everything and get a completely different reality from it. And it’s what you said. It’s like, Okay, what else could this mean? I, I, I went to the most, worst event course training program in 2011 that, oh, my god, that was just a complete waste of money from a what I was meant to learn there, and why I went there.

Bill Gasiamis 57:47
I got zero value, paid five grand in 2011 Wow, to be there, right? Thought I was going to get all this amazing business information, and I was going to come back and I was going to, you know, it was the bill that was going to work out how to work more harder, make more money. That guy was going to this course.

Bill Gasiamis 58:10
And at that course, I’m not sure how, but there’s 10 people from that course all kind of just found each other, like magnets and just wolf for the three or four days that we were there, hung out with each other the entire time of on all the breaks, etc, and we tried to find ourselves in the in the training as well, so that we could interact with each other during the training.

Bill Gasiamis 58:35
And in that course, that course was about three or four months before I’ve had the first brain hemorrhage in February, 2012 and in that course, happened to be so my brain hemorrhage, I’m a I’m a bit of a drama queen, so I dragged out my illness for as long as I could. 2012 I had two bleeds. 2014 I had a second bleed in November, and in November also had brain surgery, and then I had to learn how to walk again.

Emily’s Experience with Beta Blockers

Bill Gasiamis 59:03
So I dragged it out all for about the best part of about three years, when I was in the thick of the drama, not the healing kind of still the tough part, stroke and and in that course, was a guy who his name was David. I’ve written about him.

Bill Gasiamis 59:25
I have an acknowledgement in my book about him. He used to say to me, why don’t you just come to meet me for lunch at my office on this day, and I was at home, not working, tripping out of my head all the time because I was dealing with stroke and all that kind of stuff. There was a blood clot in my head about the size of a golf ball, just, you know, impacting all my brain and all that kind of stuff.

Bill Gasiamis 59:55
I wasn’t capable of doing almost anything. Yet somehow I would find myself at lunch with David, and he would give me an hour of his time once a week or twice, a month, something like that. And that’s the only time I ever interacted with him in the course. And then seven or eight months later, at lunch with him, he would, I don’t know, like, it’s like he gave me some meaning, some purpose, something.

Bill Gasiamis 1:00:23
And after that time, the only other time he interacted with me was, there’s another course I’m going to you should attend it. I went to that course with him, and that was in 2014 we did the course and and I haven’t interacted with him again, but the learnings that I got from that guy and that interaction, the guy who turned up just at the right time, a few months before the stroke, who reached out to me, who I didn’t reach out to, who reached out to me and helped me In for no return whatsoever, just blows my mind.

Bill Gasiamis 1:01:02
My best friend, another lady who was at that course, her name was her name is Louise. She and I have been as thick as thieves, although we don’t see each other too much since then. And she was my coach, my first life coach, confidant, major cheerleader, just the most amazing person who, every time I needed to get through a tough time, she would happen to just call at the most perfect time, and now she’s going through a bit of a tough time herself, so I’ve been that person for her.

Bill Gasiamis 1:01:46
That happened at that most terrible, most ridiculous, expensive course. And in that course, there was another two or three people who I still see now, one of whom has had a stroke. Just recently, reached out to me to go, I’ve just had a stroke, and I’m like, wow, I’ve got you no worries. So it’s such a weird thing. It’s like, what that course could have been? What a waste of money. I’m never going back.

Bill Gasiamis 1:02:15
I don’t want to do any of that stuff again. I’m never doing another course again. It actually became, what else could this be? What else could I turn it into? And I turned it into the most amazing, supportive, friendly, caring, loving friends that far that has paid a dividend, far more amazing and my return on $5,000 is just, you know, you can’t put, you can’t put a price on it. It’s just unbelievable. And that’s kind of where I feel you’re that’s how you’re moving.

Emily Gable 1:02:58
Yeah, for sure, for sure. I i Also, right now, I eventually, I forget. I don’t really, I think it’s since my divorce. I’m very particular about how I spend my time and with whom, like I have no tolerance for spending time with anyone I don’t want to be around. Like, I just, just to me. I’m, like, Why? Why would I? Why would I do that?

Emily Gable 1:03:28
There’s no reason. Like, I have two dogs that I love. I’d rather be home hanging out with them, yeah, or my kids, you know, but and doing things that don’t appeal to me, um, you know, when I was younger, maybe, you know, definitely, when I was in my early 20s, I’d be like, let’s check it out. Like, let’s just see and now, um, yeah, why would I do that?

Emily Gable 1:03:52
You know, if I didn’t, if I didn’t see any thing appealing in it, for some reason or another, I’m not going to try. It’s not that I don’t want to try new things. I just don’t feel like everything is worth my time, because I know how important it is for me to feel rested, to feel like I’m loved, and being somewhere where I’m like, completely disoriented, and maybe I have to, like, sleep less, or, I don’t know what you know, different scenarios I have no interest if it’s not filling your cup. Yeah, exactly, exactly.

Bill Gasiamis 1:04:34
It’s not about being disconnected. It’s not about being you’re not doing it through lack of for or through fear. You know people do? Yeah? Do you know agoraphobia? I’m not going in there because I’m I’m fearful. I’m not avoiding it because it’s a tough walk. I’m not a. Avoiding it because I’m avoiding it because does it fill my cup? It’s a completely different reason. It’s like what you’re doing is prioritizing your desires, your needs, over somebody else’s needs and desires.

Emily Gable 1:05:14
Yeah, and one of another thing that I do that is a perspective that I’ve gained more from when I broke my ankle, but also from my stroke. I park as far away from the store as I possibly can, because I can walk. Every time I’m like, yeah, there’s a space that’s close by, but I can walk, so I’m going to park far away and I can walk, and that’s the reason why honestly.

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Emily Gable 1:05:45
And, you know, I don’t take it for granted, because there’s been so much of my life when I haven’t been able to walk, I had a handicap sticker, and I did not like it. I did not enjoy being in that place where I had to be close to where I was going because I couldn’t figure out how to walk. So you know now I’m like, I’m going to park far away because I can.

Bill Gasiamis 1:06:13
Gratitude is an interesting concept as well. I think what you’re talking about is gratitude for what you have regained, and what has come back? And even for people who haven’t regained the level of walking that perhaps they wanted to, maybe there’s other areas of gratitude that they can tap into, what they can push yourself in a wheelchair, access an electric wheelchair like I don’t know what it is for you, but you need to find the thing that you can be grateful for.

Bill Gasiamis 1:06:42
I can relate to what you said about the parking Okay, so my wife and I, we go out with a couple who is a friend of mine. The lady is a friend of mine from school, so I’ve known him forever. Her partner is an amazing guy, but he does the Let’s drive around the block a few times to get the closest spot. And I’m like, we’re in the vicinity. There’s a spot.

Bill Gasiamis 1:07:11
Why don’t I just park there? And he’ll always go what we have to park three kilometers away. And I’m like, doesn’t matter, man, we’ll walk. It’s not too far, you know, we’ll get there. We’ll be fine. I’m all about just going. Okay, here we are nearby. Grab that spot. Let’s go. And then, of course, just so he can harass me even more as we’re walking down further to the venue.

Bill Gasiamis 1:07:34
Yeah, there’s another one. There’s another one. Why couldn’t we park there? Bill, I don’t know. Man, it doesn’t matter. We parked already. We would the car’s safe. We’re walking. It’s all. We’re going to get there and then walk back, and we’ll burn, burn off some of the calories that we’re going to consume, you know, if we have too much to eat or whatever.

Bill Gasiamis 1:07:53
And then the other thing I do is escalators and stairs. So if I find escalators and there’s stairs next to them. It sucks walking on the stairs because my left leg scissors up and it’s hard, and I’ve gotta hold onto the rail and everything, but always take the stairs the same reason. Yeah, because and it It blows my mind when I see people, you know, those travelators, the ones that you see at the airports.

Emily Gable 1:08:24
We call them people walkers, yeah, I don’t know why, yeah. That just like, move.

Bill Gasiamis 1:08:29
Where people walk on, stand on them and then stop moving, yeah, but the travelator can do the job for them, yeah. It’s like what the hell are you doing? Yeah, why are you stopping on this thing?

Emily Gable 1:08:43
Because they want to look at their phone.

Bill Gasiamis 1:08:46
Or why when the escalator is going down, I can understand if you, if you’re not walking up an escalator because you might not be able to, might be hard. I get it, yeah, but when the escalator is going down, for most people, that’s a doable task. You can still walk while the escalator is going down, and you can still walk on the travelator.

Bill Gasiamis 1:09:06
And I’m like, you, I’m if I’m on a travelator, because it’s a very long distance to the terminal, I’m walking on the travelator, so I’m just getting that to get me there a little bit quicker, you know, a 30 seconds quicker. And the staircases, I always take the stairs instead of the escalator, or the lift, what we call the lift, you guys call the elevator.

Emily Gable 1:09:33
Yeah. I actually get really dizzy on those, what you’re calling the travelators. I can’t I can’t walk on I can’t go on them, because I think it’s the speed, I don’t know, because I, you know, riding a bike, you go fast, but when I stop, my brain hasn’t caught up, and so I get kind of vertigo when I’m done. I’m like, Whoa. I get really disoriented.

Emily Gable 1:10:09
But I also get really disoriented flying in an airplane too. How the relationship of my body to the ground like the in that feeling when I had the stroke, it was like the ground dropped out from under me, and there was no up or down, left or right, side to side like nothing, and it was just like I was existing in space, but I didn’t know how.

Emily Gable 1:10:22
And so I, when I, when I fly, I can get into a state like that really easily. When I’m disoriented in my surroundings, so only being able to see what’s inside the plane, but feeling things is like it messes, you know, and it’s also anxiety, for sure. I don’t really like the idea of the of flying, but then it’s it’s just disorienting for my brain, for my sense of balance.

Bill Gasiamis 1:11:06
Yeah, humans not meant to be in the air in a tin can.

Emily Gable 1:11:11
Right. Yeah. It is a weird experience in general. But with after the stroke, like, definitely a lot weirder. Yeah, yeah, okay. And traveling getting to get being exhausted from traveling. The last time I flew was last year. I my kids and I went to Puerto Rico, and our flight was delayed by eight hours, and we got home at 6am was long day, and I was so exhausted, I can’t sleep on planes for this very reason of this disorientation and like, if I if I put close my eyes, I start spinning.

Emily Gable 1:11:53
So it helps me to keep my eyes open, even when I’m exhausted. And I got home and I was sick for a week, and I knew, and I it’s like, I knew when I maybe I it was a self fulfilling prophecy, but it was. It’s like when they said the plane was delayed again and again and again, I was like, oh, no, I can’t not sleep. And my kids are like, you’ll be fine. I was like, No, you don’t understand. I need sleep. I have to sleep in this body at this point in my life, like it’s not a negotiable thing.

Bill Gasiamis 1:12:24
I’m the same as you the time zones. The changing of time zones really puts me out of whack and that I need to sleep thing, yeah. That is, yeah. It’s a not I should sleep, or I could sleep. Like I must sleep. I have to sleep, yes. And I know that too, because I am then not capable of doing anything or being in the world, in the world that I need to be in the next two or three days if I don’t get sleep.

Bill Gasiamis 1:12:54
And I’m the same, I don’t sleep on planes. I can’t do it. Yeah, and then you suffer the consequences. And I kind of almost think about, well, was it, was it even worth it? But of course, you know, being away with somebody in a different place, doing something, meeting your family, where it’s all worth it, but yeah, Geez, it’s such a big price to pay afterwards on the return.

Emily Gable 1:13:21
Sure, it is definitely 100%

Bill Gasiamis 1:13:26
Yeah, you’re 17 years post now. How connected are you to that whole stroke journey? I know that. We’ve spoken about stroke and all that stuff, and I talk about my stroke like it’s something that happened to me in the past. So I’m not kind of connected to it, although I live with the deficits of it and the daily challenges that that causes. I’ve I’ve almost separated the two things that are happening now to what the events of the past were, were like. It’s kind of my new normal, weird, yeah, yeah. What’s it like for you to experience yourself now 17 years post?

Emily Gable 1:14:14
Yeah? Um, well, I still have these temperature, lack of temperature sensations, although I have regained some of that on my face, which I like on a really hot day. A few years ago, I held up a cold drink to my face, and I was like, oh my god, I can feel that it’s cold. And I was so excited, because that wasn’t possible before. So the doctors say, which I call medical vexing, you’ll never feel like this, you’ll never do these things.

Emily Gable 1:14:50
And I just think that’s a bunch of BS because, you know, that’s why I say, that’s why I call it medical vexing. It’s like, they’re telling you that’s not going to happen. I’m like, How do you know? So they’re like, if you. Can’t feel the change in, you know, a year, then it’s probably always going to be like that. Well, that’s not true. I really think that anything is possible.

Emily Gable 1:15:09
So, you know, people that are listening that think, Oh, I’m never going to walk again. I’m never going to be like this or that again. Anything’s possible. Really, anything is possible. And I didn’t put my mind to like, I’m going to feel temperature again on my face. But it happened, I have a I had a feeding tube to my stomach, so I have, like, a second belly button.

Emily Gable 1:15:34
I have problems swallowing still sometimes, like when I’m stressed, I can’t eat rice in combination with anything, like, if I eat rice and vegetables or rice and chicken, like, if I’m chewing the things in my mouth at the same time, I can’t swallow it. But I can eat just rice. I don’t know what that’s about. So in general, I don’t eat that much.

Emily Gable 1:15:59
Or, like, like a bready thing, like a scone or something like that. A lot of times I can’t swallow it or pizza, but I have realized that a lot of it has to do with my biggest nerve and being like relaxing myself, and then my swallowing mechanism starts up again. I had a lot of that happen when I was in the divorce phase of my relationship with my ex, and I wasn’t able to swallow a lot when I was with him.

Emily Gable 1:16:33
And then once we split up, that stopped. And I was like, Oh, interesting. Okay, that was a that was a stress thing. But I really do think that that the the swallowing mechanism is related to the stroke. Since that was gone, I have worked really hard to regain balance. That was a really difficult thing for me to do, was that bilateral, like, can I balance on the right foot? Can I balance on the left foot? How is that?

Emily Gable 1:17:06
And it just takes work and consistency to keep, keep practicing, like, little by little. You know, just spending a couple minutes on it a week, even, I’ve progressed to now I can, like, do a like, I can keep one leg down on the ground and have one leg up and reach down and touch the ground without needing to fall over immediately, and not keeping the other I started with just kick standing my leg, the opposite leg, and not even going down on the floor.

Emily Gable 1:17:39
You just, like, progress, just a little little little, little every time. And I feel more confident with that than I ever did before. So you know, if I weren’t to practice balance stuff, I would quickly be out of balance. So it just, it’s like, it’s not like, Oh, I did that. Now I’ve reached that goal. Now I’m done. It’s like, no, I got, I just, you just got to keep working on it all the time. Yeah, so that those are the main things.

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Bill Gasiamis 1:18:07
You seem calm. And when I spoke to you last time, you even seemed calm, kind of like very thoughtful, very deliberate with your actions, with the things that you go about. Were you calm during the tough times, during that time when everything was happening at once and coming out of nowhere.

Emily Gable 1:18:33
I think I was because I didn’t have much of a voice. Yeah, here comes my baby. Say hi. This was my baby in my belly. He’s interviewing me about stroke.

Bill Gasiamis 1:18:53
Mate how are you? I’m good. How are you? Yeah, good, good. Let us know. If you don’t want this on the podcast, we’ll edit it out. But if you do, it’s staying.

Emily Gable 1:19:01
I don’t mind.

Bill Gasiamis 1:19:05
It’s good to see the person who was in the belly, uh, 17 years ago when your mom was going through all that stuff.

Emily Gable 1:19:14
He’s a healthy, tall boy.

Bill Gasiamis 1:19:18
Fantastic! Great to see you.

Emily Gable 1:19:25
Yeah. So, I think I was calm. I don’t know that I was able to express myself the way I would have wanted to, because I was so disoriented and so confused. Yeah, I think that’s part of why I had so much like medical mistreatment, because I wasn’t able to speak up for myself. Okay, makes complete sense. Yeah. Yeah, but the one thing that I was able to draw on was my breath. And that’s been something that I keep coming back to, is realizing, like, Oh, I’m breathing, and that’s what qualifies us to be alive, is the breath.

Bill Gasiamis 1:20:16
So from all of that stuff, you just narrow it down. That’s one thing I’m doing that. That’s where we start.

Emily Gable 1:20:24
Yeah, you know when in the MRI machine, when they’re the things are banging. I couldn’t swallow. I didn’t know why. I didn’t know what was going on. It was just free, just breathe and watching, and then watching my dad die. I watched it happen. He took his last breath. I mean, that’s real. You’re not alive when you don’t breathe anymore.

Emily Gable 1:20:50
So you know, we’re all here, hearing things, and we’re breathing. And that’s what I always come back to, is my breath. I can breathe, and consciously breathing. And I teach different movement modalities, but this the center focus of all of it is breathing and and bringing yourself to your breath.

Bill Gasiamis 1:21:10
I’ve had headaches for probably the last six months, and I’ve been trying to get to the bottom of it. At the beginning, I, you know, overlooked it. I didn’t think about it. It was this. It’s that I need, I need a paracetamol. I need this, all sorts of things. Anyhow, it’s gone to the point where enough’s enough. So I went to, I went to the GP, and I said, I need it.

Bill Gasiamis 1:21:34
I need a MRI. Get us an MRI. That was about three weeks ago when I did the MRI. And exactly what you said, Go in the machine. It’s making all the noise. And I’m not typically claustrophobic, but I tell you what, I don’t enjoy being in an MRI, especially the amount of MRIs that I’ve had in the last, 13 years, 14 years, and I started to freak out.

Bill Gasiamis 1:22:01
And before I went in, you know, I’m not even in yet, and I’m getting worked up about it, and I just started breathing. That’s exactly why he said it. Started breathing. I breathed my way through it, and because I was doing such a good job, 27 minutes went by really quickly. I didn’t know the time frame. And the nurse, the, I think it was a nurse who was in there, said, Hey, how you going? Are you okay? And broke me out of my focus and my concentration. And as soon as she said that, no, get me out.

Bill Gasiamis 1:22:38
I gotta come out. Yeah, she comes out, she gets me out. And I said to her, how much longer do we have left? She said, we only have three minutes. I said, Okay, give me a few minutes. Let me start breathing, and then once I calm myself again, we’ll go in for the next three minutes. And sure enough, we got through it.

Bill Gasiamis 1:23:00
It was the only thing that was going to get me through it, being in my head trying to convince myself wasn’t going to do it. Not one, not one bit, yeah, and it was just such a gift to have that so. Long story short, is MRIs clear. There’s nothing in my head that is causing the headaches. But three. But today’s Friday, where we’re recording Friday, Melbourne time, Sunday.

Bill Gasiamis 1:23:28
A few days ago, I was in hospital because my blood pressure had got to 170 over 110 Wow. And it was like that for about two days. And I thought, forget this thing. We’re gonna go to the hospital. Got them to check me out. They did a CT scan that proved to be clear as well. So now I’ve got an MRI and a CT scan.

Bill Gasiamis 1:23:48
Soon, we’re going to go to the neurologist to compare them to the old ones from 2016 when I did my last one, just to make sure nothing’s changed. But what they’re diagnosed was high blood pressure, but out of nowhere, now I’m dealing with high blood pressure. Isn’t such a bad thing, because, you know, this day and age, you can get a little tablet take it once a day, yes, and all of a sudden, the headaches are gone.

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Bill Gasiamis 1:24:14
My blood pressure has come back to normal. When you check it, you know it’s back to normal. I can feel it when it’s high, because my head starts hurting, and I go and see my chiropractor. My chiropractor is a they call him a network chiropractor. They don’t crack, they just touch and what is the first thing he say about high blood pressure, start breathing, just learn how to breathe. That’s it okay. I’m listening.

Emily Gable 1:24:48
I have had high blood pressure, and I’m on blood pressure meds right now. For that very thing, it’s I was getting headaches, and every time I would go to the doctor. My blood pressure would be high, like, just for whatever checkup. And they’d and I’d say, I have white coat syndrome, because I do.

Emily Gable 1:25:08
But they were like, Okay, get a blood pressure cough at home and do it there, you know? And then I was like, that’s fair. And it was high at home. And then I went, and finally I went to the GYN, the gynecologist, and she was like, Stop it. You’re taking this medicine now. You’re don’t BS me about this white coat thing anymore, like you need. And I stopped having headaches.

Emily Gable 1:25:34
And I’m like, You know what? It’s okay, because I had these horrible memories of they gave me beta blockers for blood pressure when I had the stroke, which made me feel so terrible, and they don’t they, they don’t have to give you those. There’s other things. The beta blockers just made me feel like really disoriented, and out of it, they made me dizzy. And then they give you medication to make you not dizzy, but that can give you high blood pressure. Like everything causes the other thing. So I had to, like, wipe that clean, in my mind, got some something, and that really helps.

Bill Gasiamis 1:26:14
I just, you know, I’ve had 30 at a 37 I had brain hemorrhage. At 40 I had brain surgery. At 42 I had thyroid surgery to remove half of my thyroid, because a large an enlarged gland a goiter, what they call a goiter. So had to deal with that, recover from that, and now high blood pressure just out of nowhere. Well, what seems like out of nowhere.

Bill Gasiamis 1:26:45
I don’t know how long I’ve had it for, because I’ve never had any symptoms that would suggest that there was something wrong, until all these crazy headaches for months now. And I have to remind myself, because I did the whole why. Why do I need to have this now? Why do i Why does this need to happen? I have to remind myself about the whole going.

Bill Gasiamis 1:27:11
Often say in my podcast, when I speak to people, you’re not going to get through life unscathed if you get through life and you’re at 99 and nothing has ever gone wrong for you. You haven’t lived, you haven’t lived a life, and it’s like, okay, I could get down about this as well and have to deal with this as well, or I can just be grateful that there is a little pill that somebody came up with that helps to bring it down and is going to extend my life.

Bill Gasiamis 1:27:46
And I’m not going to have another stroke because of high blood pressure, another hemorrhage because, yeah, now that’s where that’s that hit is heading, if you don’t deal with it. I know interviewed tons of people who have had a brain hemorrhage because of high blood pressure that they neglected or didn’t know they had.

Bill Gasiamis 1:28:04
Yeah, and I’m just oh, well, here we go. Here we go again. Learn something from this? What can I learn from this? What can I do to guide people, encourage people, tell them it’s going to be okay. You know, maybe I can live with 10 different bits of me missing and seven ailments and still be living a meaningful and purposeful life. Maybe that’s definitely possible. Why not?

Emily Gable 1:28:36
And it might just be also like little tweaks that can be done. Who knows? Who knows? You know, like with the blood pressure thing, I’ve been listening to some like scientific information about, like, how to address it with exercise, like, the most targeted, specific ways. And I’ve, I’ve been, I was do, I was on a I was on a roll of doing this, and then I got line, and my energy level just plummeted. And I was like, Well, I’m not doing that anymore.

Bill Gasiamis 1:29:15
Tell me about lime. Like, what is that and how does it manifest? Or what does it feel like?

Emily Gable 1:29:20
Yeah. So I had a tick bite. I had a tick embedded in my side, It had looking down towards my torso. My breast was in the way, blocking it so I didn’t see it, which sucks, because if I had actually seen it, I would have been like, there’s a tick, but I felt this thing on my side that I thought was a scab, but it was really like a tick embedded in me. And I don’t you must not have lime in Australia. Hopefully it hasn’t made it there.

Bill Gasiamis 1:29:56
I’ve never heard of it in Australia, but I know of people who have had it. I. Think always the people I’ve heard have had it, picked it up somewhere else I think, I feel like it’s not a big problem here.

Emily Gable 1:30:10
It’s a really dense, there’s so many ticks in the Northeast where I live, and so, you know, I would I take my dogs for a hike and pull like, 20 off of them that are crawling on their skin. So we did a full tick check, like before we came in. After the hike, I changed, I took off my clothes, took a shower, you know, got dressed, we went out, came back that night. I was like, hm, it feels like a scab.

Emily Gable 1:30:36
That’s interesting, but I was so tired, didn’t think anything of it. Went to sleep. The next morning, woke up, took a shower. After the shower, I am like, getting dressed, and I’m like, oh, oh, that’s a tick. But so it had been embedded in me for at least, probably 12 to 15 hours, maybe even 24 you know, sometimes they fall off like it might have been on the dog, and it was crawling on the floor, and then crawled up on my leg.

Emily Gable 1:31:03
You know, they’re sneaky little buggers. They’re kind of like creepy, the way that they just appear. And, and it was a bigger one. Everyone says, oh, deer ticks are the only ones that carry line, which are these tiny little but it was a bigger tick. It was, I call them, I call them dog ticks. I know that’s not what they are formally, but it’s bigger. You can see it like, it’s pretty obvious what it is.

Emily Gable 1:31:34
You know, it’s the size of, like, the top of a pen, we’ll say like the like, the part that is rounded at the top, not not where you write, but the other end, the deer tick is like the point of the pen. It’s tiny, wow. So we pulled it out, but the head was stuck in it. But apparently it doesn’t matter if it’s infected, the longer it’s in you, the more chance that you already have something.

Emily Gable 1:32:01
So that week, I was feeling really achy in my sacrum, and I was like this, and I thought it was transference, because I had a client that had a sacrum issue that week. And I was like, this is weird, because I I’m really good at my boundaries with clients and, like, not taking on their stuff, because I would be a wreck if I did. So I was like, wow, that’s weird.

Emily Gable 1:32:26
I must have taken on her stuff. I have these weird aches in my sacrum. And then, and that was like, maybe Tuesday, and I was, I don’t know, I was just feeling like a little weird achiness that wasn’t like I normally do. And then it was, I took my daughter to a concert. She was really sick. She had a cold. She was like, in bed on Saturday, and Saturday afternoon, it was like, I hit a wall, and it was like, really bad flu symptoms, like fever, achy joints, sweating, freezing cold, all that stuff.

Emily Gable 1:33:11
And then it was Mother’s Day, and I was like, Oh God, I don’t know what is happening to me. And I felt like, you know, all out of sorts. I had really intense brain fog, which I never experienced before fully, where it was like, there was like a it was like my glasses had, it would be like, if I, if you wore glasses with a foggy lens all the time. It’s the only way I can describe it.

Emily Gable 1:33:38
I just felt like I couldn’t think clearly, like I couldn’t I was like, Okay, I’ll just watch TV. And even that, I was like, I don’t even know what I’m watching. Like, what’s the point? I just wanted to sit and like, stare, you know, like, zone out. And then I took myself to urgent care like I I was hoping my kids would be like, I’ll take you, but I took myself, and the the person there, was like, I’m not even going to test you, because every single symptom I had was for was Lyme, and I had the tick bite.

Emily Gable 1:34:15
So he took the tick head out, prescribed me 28 days of doxycycline, because that’s been proven to like, knock the it’s a it’s a bacterial infection. And what happens is the antibodies stay in your body forever or for a long time, but if it goes unchecked, it can enter your nervous system, your cardiovascular system, like all these different parts of your lymphatic system.

Emily Gable 1:34:47
So it it attacks the immune system, but then it can attack people can have, like, really intense cardiac symptoms, respiratory symptoms, like years down the line, if they didn’t know so I know a lot of people. That, you know, maybe they got bit by a tick two years before, and then they’re like, I don’t know what’s wrong with me.

Emily Gable 1:35:05
And it takes a while for them to figure out they have Lyme they go through around, you know, the doxycycline at that point is doing something, but it’s, it’s really good if you get it right away. So I got it right away, taking the doxycycline absolutely sucked. I felt nauseous every day for 28 days the first two weeks, like the first week, I was still like bad flu symptoms didn’t leave my couch.

Emily Gable 1:35:32
Basically, I didn’t work. I couldn’t I couldn’t do anything. Week Two after that, I was moving around a little bit more. I still didn’t feel like completely myself. And then the last two weeks of it, I felt better enough like I was going to the gym. I wasn’t doing anything crazy, but I was just trying to move my body a little bit.

Emily Gable 1:35:54
And then I finished it on June 8, and then I and then I actually, I had talked to a woman about this, and she said, the day I stopped taking it, I felt like a different person and and maybe it was because I heard her say this, but that’s what happened. I just felt like, oh my gosh, I’m done. I’m free.

Bill Gasiamis 1:36:14
And also, because June the eighth is my birthday.

Emily Gable 1:36:18
Yes, I knew you were a Gemini, yes.

Bill Gasiamis 1:36:27
You’re a Gemini too?

Emily Gable 1:36:29
Yeah? June 13.

Bill Gasiamis 1:36:34
Very cool. Very cool. Yeah, you were, yeah. Were you June 8? Everything kind of settled. And then was it okay after that?

Therapy and Rehabilitation in Stroke in Pregnancy Recovery 

Emily Gable 1:36:43
Yeah, June 8 was actually the night of June 8 was my last dose. And then June 9, I woke up and I felt better. I’m taking some, like, really powerful herbs right now that I probably going to take for the next six months to, like, support my immune system that it’s part of a line protocol, so I take those once a day and yeah, I’m just trying to sleep when I need to, you know, stay hydrated. Be gentle with myself.

Emily Gable 1:37:20
Yeah. That’s really important.

Emily Gable 1:37:23
those are things that I learned after my stroke. Like, have grace with myself. Like, don’t think that I should be doing something if I’m more, like, if it’s a hard No, intuitionally, then I’m just not going to do it.

Bill Gasiamis 1:37:38
Be kind with yourself. It’s such a it’s such a great thing to learn and then to be able to apply it to many different things in life. I made a mistake that’s right. Be kind to yourself. I was really hard on myself actually, probably about two weeks ago, beating myself up about a business decision that I made that cost us six grand.

Bill Gasiamis 1:38:00
We don’t have a spare six grand to just lose on anything, right? I don’t know who does, but I definitely don’t. And, oh man, I didn’t sleep for literally, you know, I’m pretty that night and the night before, so for about two nights, I just had myself in this space, this mental space of like being your idiot, you know this and that, which I normally don’t do.

Bill Gasiamis 1:38:28
I don’t normally do that to myself. But what it also impacted was my business partner, not just me, and that made it a little bit worse, and I felt bad for what I had done for him and all that kind of stuff. And it’s like, dude, and I kind of needed him to get me over the line to almost forgive me for having done it. I went and saw him and we had a conversation about it.

Bill Gasiamis 1:38:55
So what I did was, instead of, you know, I have a property maintenance business. So when you charge people $10,000 to do something at their house, the only thing in the last 20 years, the only thing I ever get pulled up for is, oh, I think you forgot to do that thing you said you were going to do as part of the 10,000 okay. Oh, sweet, sorry about that.

Bill Gasiamis 1:39:16
I’ll go and get it done for you. What I did was I that $10,000 price? For example, I told the customer we are that includes all this other work that they didn’t actually ask us to do. So I gave her a price at the beginning, two months ago. This is stroke, brain impacting these decisions. I gave her a price to do 10 tasks. We I knew it was in writing, in email, in the quote everywhere, and when I sent the boys to do the task, or when I was with them on site, I said to him, you’re doing these 10 tasks.

Bill Gasiamis 1:39:55
But for some reason, I added another task that the customer didn’t ask for, wasn’t getting charged for, didn’t expect and I had four guys spend three days doing this task that wasn’t part of the job, and the customer rang me and said, day one. And said, I’m not sure. Are we still in the scope that we spoke about? But I’m like, Yeah, for sure. The guys are going out there. She goes, I’m not sure if we are paying you to do this extra work.

Bill Gasiamis 1:40:33
I said, No, you definitely aren’t paying extra for it. You’re paying the amount that we agreed to on the quote, etc. And she’s going, are you sure? And I’ve got Yeah. And then I worked it out. About two or three days later, the coin dropped, and it’s like, oh my God, I am spending money to do something that the customer hasn’t asked for no reason.

Bill Gasiamis 1:40:57
And then it was a downward spiral after that, it was you idiot, you this, you that, can’t sleep, your business partner, the guys, all these things just got out of hand. I had the forgiveness of my business partner, and that made it a little better. And then I had to do that to myself. I had to forgive myself. Just do the thing that I keep doing, because strokes cost me way more than $6,000 hundreds of thousands of dollars.

Bill Gasiamis 1:41:29
Stroke has caused cost me, yeah, I have to do the whole the only way I got through that was to say, in a scheme of a lifetime, even if it’s $200,000 like, doesn’t make a difference. Like, it doesn’t matter. Really doesn’t matter. Sure, it was amazing to have it if I could have so the six grand doesn’t really mean anything. It’s a terrible mistake. It means that, you know, we’re going to struggle to pay this bill for two weeks, compared to just being able to pay it and move on our supplier and all that. But that’s all it means.

Emily Gable 1:42:12
And you’re never going to make that mistake again.

Bill Gasiamis 1:42:14
Well, I don’t think so, because now we’re going to implement a solution, and the solution is to have my business partner have access to see what I see when I’m quoting and when I’m at the site, he’s already seen all of that stuff, and I’m not delivering it to him, to him for the first time, because I’m the quote guy. He’s the on on the tools guy.

The Importance of Self-Care and Mindfulness

Bill Gasiamis 1:42:39
I’m not delivering it to him the first time, and he’s taking my word for it, because I haven’t made that type of mistake before, yeah, whereas now I have to have a a measure in between us, because I can’t he can’t trust me either. I’ve told him not to, to question something that doesn’t sound right, because he just took my word for it. So we’ve learned a lot from it. And that’s another thing, another lesson that came from it, and growth and opportunity there, but being hard on myself, I really, for the first time in a long time, had to say, be kind to yourself.

Emily Gable 1:43:15
Yeah, yeah. I think that’s the biggest lesson. I really do think the biggest lesson from stroke overall, from the all of the experience, was I have to be kind to myself. You know, when I have clients on my table and there’s so much negative self talk I hear coming out of their mouth, I’m like, I It’s hard for me not to just say, like, please be nice.

Emily Gable 1:43:46
I do say I’m like, You have nicer words for yourself than that, you know? And my dad had things that he’d say that were like little nuggets. And he would say, if you don’t have anything nice to say, don’t say anything at all. And I’m not perfect in saying nice things to myself all the time, but I catch myself a lot, and then I’m like, Oh, I’m not. I’m just not even going to say anything out loud. Like, I’m not going to even have that thought.

Bill Gasiamis 1:44:14
It applies to other people. You wouldn’t treat your worst enemy like your your friend like that. If you don’t have anything nice to say about someone, don’t say anything at all. Well, that lesson is applicable to us as well about ourselves, our own self talk, and sometimes we forget to apply those nuggets to us, and we just apply to people, and we make it all about others, and we forget about what we do.

Bill Gasiamis 1:44:43
You know, we make ourselves feel bad and all that kind of stuff, and then we change our own neurochemistry, and we change our own emotional health and well being, and we’re responsible for that. We’re the only ones Yeah, to step up. Yeah. Yeah, that’s a great lesson to learn. You know, I really appreciate you reaching out and joining me on the podcast again. It is great to catch up with you again and to share the the journey of somebody who is 17 years post stroke and has been through turmoil and come out the other side.

Bill Gasiamis 1:45:21
And I think a lot of stroke survivors are probably doing the right thing, just focusing on now, how to get through now. And once you come to the other side of that, you’re a great example for how you can how how you continue to live and grow, overcome, learn, discover, change Your Life, endure the tough times, the challenges and it’s also really good for me to see that, because I’m not 17 years post. I’m just a little bit before that I’m about 13.

Emily Gable 1:46:15
And I want, I just want to share one thing. I had someone reach out to me over Instagram because they heard my interview with you on recovery after stroke, because his wife had had a stroke while she was delivering. I can’t remember the details, and it was, I think it was a couple years ago, but he was reach. It was the husband was reaching out to me of like, I could tell in a panic and had found your resource, and found that my episode of, like, pregnant and stroke, and I just suggested, like, get as much support around you.

Emily Gable 1:46:55
Like, take care of yourself as the caregiver. And obviously your wife needs, like, all the support that she can get, but you also need the support, and that was my advice for him, was to, as the caregiver, make sure that you’re not forgetting about yourself. And also, you know, obviously she needs, she needs that support around her.

Bill Gasiamis 1:47:19
She should have the hospital team, you know, doing their thing to an extent, but there’s no point having a sick caregiver, because they’ve neglected themselves and put themselves into caring and looking after and doing everything for the person who’s unwell. Two people unwell at the same time is a disaster.

Emily Gable 1:47:42
So I hope that all the people in that situation are doing better, and I’d imagine it’s hopefully behind them at this point. I can’t remember how when that was, it was in the past two years, probably.

Bill Gasiamis 1:47:57
I have in the past two years as well. And you know, people reach out and give me credit, but the reality is is the people who reach out and give me credit wouldn’t be in a position to do so if they hadn’t, if this podcast wasn’t a compilation of two people coming together to do an interview and talk about stroke and then grow, grow Google’s what Google thinks about whether we should send this information to people searching for stroke resources.

Bill Gasiamis 1:48:33
So I had a lady reach out and say that because of one of my interviews, she avoided having a full blown stroke because she had a carotid artery dissection, and when she typed the symptoms into Google, somehow my episode came up and she listened to it.

Emily Gable 1:48:51
Wow, that’s amazing.

Bill Gasiamis 1:48:53
Husband was about to fly interstate for work. I think he’s in the army in the United States. Uh, huh, um. She told him, Do not, you can’t go. I’ve there’s something wrong with my neck. I think I’m going to have a stroke. He took her to the hospital, and basically she went to the hospital and said, I have a carotid artery dissection. You guys need to scan my neck. And they scanned her neck. They found the carotid artery dissection. They put in a stent and avoided her having a full blown stroke.

Emily Gable 1:49:31
That’s amazing. That’s really awesome.

Technology and Tools in Recovery

Bill Gasiamis 1:49:33
Yeah, and I’m happy to receive the credit, but credit is also to the rest of the people who have joined me on the podcast, because together, we’ve all created and everyone has contacted me and said, I want to share my story. It’s time to share my story. It’s partly about them, but it’s also partly about helping other stroke survivors. So weird that people are going through stroke and. Already thinking about other stroke survivors that they want to help. It’s weird in a lovely way, like it’s amazing.

Bill Gasiamis 1:50:08
And that’s the thing I know. I re I receive emails. I love being a connector, because I can’t support all these people. I don’t know what it’s like they have a stroke during pregnancy. So it’s brilliant that people are reaching out and going, can we connect to that person.

Bill Gasiamis 1:50:27
I’ve not met a single stroke survivor who I’ve interviewed, who has had a request for a connection that has said, No, I’m not interested I don’t want to talk to that person. Just bring it, I love that we have this community now. I need it. I made a kind of a pact to 1000 episodes to myself. Go for 1000 and unfortunately, there’s not going to be a lack of candidates to join me.

Emily Gable 1:50:54
Yeah, and every stroke is so different. So it’s like, there’s like, different flavors, you know.

Bill Gasiamis 1:51:00
So many ways to get to stroke as well. You hear about ischemic stroke, and you hear about hemorrhagic stroke. Well, the the ways to have an ischemic stroke are endless, and the ways to get to a hemorrhagic stroke are just as endless, like seems to be just as endless, and I was missing this. This is what I was missing when I was going through it early on.

Bill Gasiamis 1:51:26
Trying to have this conversation with my wife, every day for the last 13 years, she would have lost the marbles. This guy won’t shut up about this. Just stop Yeah, and I wouldn’t believe her either. So this is my therapy amongst other things. And I’m just, that’s another thing I’m grateful for. You know, just it’s one of those sliding door moments.

Bill Gasiamis 1:51:53
It’s one of those, what else can we do with this? What? Where else opportunity? So I say that so that the people listening to us can go, maybe I’m going to do, take Emily’s approach, and I’m going to do one of the things that Emily suggested, and I’m going to think about things in one of the ways that Bill suggested. And if that happens from these episodes, then we’ve changed the course of history for that person in a positive way.And that’s it job done. It was worth it.

Emily Gable 1:52:31
Thank you.

Bill Gasiamis 1:52:32
Thank you for joining me. I really appreciate it.

Emily Gable 1:52:35
Yeah. This is great.

Bill Gasiamis 1:52:39
Well before we finish a quick thank you to Banksia Tech for supporting this episode and making tools like the Syrebo Hanson Rehab Glove available and more accessible to stroke survivors if you’re working to improve hand function, whether it’s early days or years into your recovery, This glove was made to support you with six therapy modes, including a patented Mirror mirror function.

Bill Gasiamis 1:53:06
It’s built for progress at home without needing a clinic. It’s also available as low-cost assistive technology and international orders are welcome through the Banksia tech website. Head to Banksiatech.com.au, or use the links in the show notes and YouTube description. Now back to the conversation we just had 17 years after her stroke during pregnancy, Emily isn’t back to normal.

Bill Gasiamis 1:53:33
She’s something far more powerful, self aware, intentional and still growing. She’s navigated motherhood with deficits, found her way into facial work and healing arts, and created space for her body to become a teacher and not just a battleground. If you’re still waking up with fatigue, still figuring out how to trust your body or still searching for who you are, now, let this be your reminder. Healing isn’t a finish line, it’s a lifelong relationship with yourself. We’ll catch you in the next one.

Intro 1:54:08
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed.

Intro 1:54:25
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.

Intro 1:54:41
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes.

Intro 1:55:00
Or as a substitute for the advice of a health professional, never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.

Intro 1:55:16
If you are experiencing a health emergency or think you might be call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content.

Intro 1:55:40
If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk and we are not responsible for any information you find there.

The post From Stroke in Pregnancy to Deep Healing: Emily’s Story of Spiritual and Physical Recovery appeared first on Recovery After Stroke.

What You Really Need to Know About AFOs After Stroke: Insights from Dr. Jennifaye V. Brown

An AFO can be a game-changer in stroke recovery or a major obstacle. In this powerful interview, Dr. Jennifaye V. Brown, a physical therapist, researcher, and author of Brace Yourself, breaks down everything stroke survivors and caregivers need to know about AFOs, ankle foot orthoses, and why the standard approach often fails.

If you’ve ever wondered what AFO stands for in medical terms or felt like your brace just doesn’t work for you, this episode is essential listening.

What Is an AFO?

An AFO, or Ankle Foot Orthosis, is a brace that supports the lower leg and foot, often used after a stroke to treat foot drop, instability, or weakness. While you may hear it described in clinical settings, many stroke survivors find themselves asking:

What are AFO braces?

What are AFO braces used for?

What is ankle foot orthosis, really, and why does mine feel wrong?

Dr. Jennifaye V. Brown’s answer is both simple and radical:

An AFO should work for you, not force you to change your lifestyle, shoes, or goals.

What Are AFO Braces Used For?

AFOs are primarily used to:

• Support weak or paralyzed foot and ankle muscles
• Prevent tripping or dragging caused by foot drop
• Improve gait and walking stability
• Enable stroke survivors to walk safely and build endurance

But too often, they’re prescribed using a one-size-fits-all model that ignores comfort, clothing choices, and recovery potential.

Why Most AFOs Are Failing Stroke Survivors

In her clinical and research work, Dr. Brown noticed a disturbing pattern. Many stroke survivors weren’t wearing their braces consistently, not because they didn’t need them, but because:

• The AFO didn’t fit into their existing shoes
• It looked bulky or unattractive
• It made walking uncomfortable or caused back pain
• It didn’t allow their knee to move naturally
• It actually prevented functional recovery

If your ankle foot orthosis is holding you back instead of helping you walk better, it might not be your fault. It might be the brace.

The Smarter Way to Approach AFOs

Dr. Brown’s approach is deeply personalized and functional. She considers:

• The lesion location and severity of the stroke
• Shoe preferences, lifestyle, and cultural norms
• Gait mechanics and muscle strength
• Whether the goal is short-term support or long-term weaning off the device

She even designs AFOs to match skin tone and fit into preferred footwear from sandals to golf shoes to formal dress shoes, because comfort and dignity matter.

What to Ask Before Getting an AFO

If you’re wondering what ankle foot orthosis is going to do for your recovery, Dr. Brown encourages you to ask:

1. Where was my stroke? (Cortical vs. brainstem makes a difference.
2. What specific muscles are weak or spastic?
3. Will this AFO let me practice functional walking, or will it limit movement?
4. Can it fit into my everyday shoes, or will I need to buy a new pair?
5. What’s the plan to reduce my dependency on the brace over time?

You have the right to ask these questions. And you don’t need a medical degree — just the right information.

Ankle Foot Orthosis Price: What You’re Really Paying For

The price of an ankle foot orthosis can vary from $300 to over $1,000, depending on whether it’s custom-molded, adjustable, or off-the-shelf. But the real cost isn’t just financial.

If you’re using the wrong AFO, the price may include:

• Slower recovery
• Unnecessary pain or falls
• Missed opportunities to regain muscle function
• Reduced independence

Dr. Brown’s philosophy is: If you’re going to wear a brace, make sure it supports both your function and your freedom.

About Brace Yourself by Dr. Jennifaye V. Brown

Dr. Brown’s book, Brace Yourself: Everything You Need to Know About AFOs After Stroke, is a practical guide designed for:

• Stroke survivors and caregivers
• Physical therapists and orthotists
• Anyone tired of one-size-fits-all solutions

It includes:

• Visuals showing custom brace designs
• Questions to ask your healthcare provider
• Functional exercise ideas
• Real-world tips for comfort, recovery, and confidence

This isn’t a technical manual; it’s a recovery companion.

Final Thought: Don’t Just Accept the Brace. Make It Yours.

An AFO should help you walk with more confidence, not less. If it doesn’t feel right, it probably isn’t. And as Dr. Jennifaye V. Brown makes clear, it’s never too late to ask for something better, something that fits your foot, your life, and your goals.

The AFO You Deserve: How to Reclaim Your Walk and Your Worth After Stroke

Most AFOs don’t fit your life or your recovery. Here’s how to take back control, walk stronger, and feel seen again in your healing journey.

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JVB Physical Therapy Services

Highlights:

00:00 Introduction
02:46 Dr. Brown’s Personal Experience and Book Introduction
06:05 Challenges of Standard AFOs
12:11 Dr. Brown’s Career Path and Educational Background
15:00 The Importance of Customized AFOs
19:27 Common Issues with Standard AFOs
27:00 How AFOs Affect Balance and Movement Strategies
39:33 The Role of Physical Therapists and Orthotists
40:11 Empowering Stroke Survivors with Information
46:55 Conclusion and Call to Action

Transcript:

Introduction – Dr. Jennifaye Brown

Bill Gasiamis 0:00
Before we get into today’s episode, I just want to say thank you. Whether you’ve shared this podcast with someone who needed it, left a comment, supported the show on Patreon, hit that super thanks button, or simply listened quietly from your hospital bed. This community exists because of you. You helped stroke survivors feel seen. You helped this message reach someone at a turning point, someone who might be wondering if recovery is still possible, and today’s conversation is for exactly that moment, because this episode isn’t just about braces.

Bill Gasiamis 0:34
It is about reclaiming movement, identity and dignity. My guest is Dr. Jennifaye V. Brown, a physical therapist and author of Brace yourself, a guide for stroke survivors, navigating the often overlooked world of AFOs or ankle foot orthosis. She spent her career asking a powerful question, what if your brace could fit your life, not the other way around.

Bill Gasiamis 1:03
In this conversation, we explore how the right AFO designed with your needs, your goals and your lifestyle in mind, can support real recovery, not just walking, but walking towards something that matters. If you’ve ever felt like your AFO was holding you back, or like no one asked you what you wanted from your recovery. This episode is for you. Let’s dive in. Jennifaye V. Brown, welcome to the podcast.

Dr. Jennifaye Brown 1:32
Thank you.

Bill Gasiamis 1:36
Sometimes people try to reach me through the various ways that they can these days, LinkedIn, messenger, YouTube, Instagram messenger, Facebook Messenger, and, and I’m not on top of all of the messengers and all the way that people can reach out and you contacted me quite a while ago, and shock horror, I was going through all of my messages because sometimes I do the whole let me check and see if there’s any old messages to any of my inboxes to see in case I’ve missed anyone and I haven’t responded, and I don’t want to be rude.

Bill Gasiamis 2:18
And I noticed that I had missed your email and hadn’t got back to you about joining me on the podcast, and I think it was over a year ago or something.

Dr. Jennifaye Brown 2:27
Yes.

Bill Gasiamis 2:28
So I’m so glad that you’re here and that we finally managed to make it happen.

Dr. Jennifaye Brown 2:34
Thank you so much for this opportunity. I’ve learned that persistence is the name of the game in all things that we do, we don’t have to be perfect. We just need to keep trying.

Dr. Brown’s Personal Experience and Book Introduction

Bill Gasiamis 2:46
Yeah, I love it. That’s a going to be something we should discuss during the interview as well. For certain now, you’re the author of a book, and we’ll talk about that as well in the interview, but for the people watching and listening, can you put the book up into the screen just for a moment, just so we can talk about it. It is called brace yourself. Tell us a little bit about the book, what it’s about, and then we’ll refer back to it as we have the conversation.

Dr. Jennifaye Brown 3:18
So I have abnormally large feet that are narrow, and I’ve always had a problem finding shoes, and then I become a physical therapist, and person has a stroke, and they have foot drop, and now they have to get a brace, and the braces often made such that it requires a larger shoe in length and in width. Then now person has to buy two pair of shoes because the shoe for the other fit is too big, and they always recommended the sneaker.

Dr. Jennifaye Brown 3:58
And I’m from the south, and women don’t wear sneakers everywhere they go, and they don’t wear them to church. And I was really challenged when I had an Atlanta socialite and she told me, I don’t own sneakers, I don’t play tennis. I think the term she used, I do alter means that she goes to watch the match, she goes dressed up. And it really challenged me to look at people individually and make a brace that suits their personality so that they will engage in functional activities and walk for exercise.

Dr. Jennifaye Brown 4:43
The best thing post stroke a person can do, because if you want to get better in walking, you have to practice the task of walking. So if you have a foot drop, you need a brace to hold your foot up so that you can walk better and that. Race should represent you in terms of the color of your skin, fit in the shoes that you want to wear, go with the clothes that you want to wear, etc. And I started looking at my research and asking people, why aren’t you wearing your brace? You come into therapy and I need it doesn’t fit in the shoe that I want to wear. It’s uncomfortable.

Dr. Jennifaye Brown 5:23
It prevents me from doing X, Y and Z. So I did some research, and I put it all together, and then that research became the impetus for this book. And so the brace itself is not always at fault. I think we need to look at the physical therapist, the orthotist, and the person with stroke or the stroke survivor. It takes a team, and communication is the key. And so that’s how the book came about.

Bill Gasiamis 5:55
Well, that is an amazing introduction. So let’s go back a little bit. You started by saying, abnormally large and narrow fit. What size?

Challenges of a Standard AFO

Dr. Jennifaye Brown 6:05
Well, we’re a size 12 quad A so my heel is very thin and my forefoot is thin, but it it opens up. And so I it’s a hard time for me finding shoes now. So some of my shoes in Charleston, there’s this famous store called Bob Ellis, and they’ve closed. And before them, I used to go to Cass’s brothers because they had the kids type shoes, but they didn’t have the dressy, fancy shoes. So until about five years ago, I could get Salvador fairgamos.

Dr. Jennifaye Brown 6:44
I could get, oh, I can’t the says, I think I have a pair Jimmy choose. I could get all these brand name shoes in my size. And it’s getting harder and harder to find shoes in my size, so I’ve been taking my shoes now from 20 years ago to a man named Mr. Peter here in Charleston. He’s reselling them and doing everything for me.

Bill Gasiamis 7:10
Excellent. So what was it like growing up then and being in a situation where your foot is a little bit different, and I imagine kids shoes are not that easy to to sort of service to support somebody like you that’s got a different foot, right?

Dr. Jennifaye Brown 7:30
So I went to Cass’s brothers, and he was a petios, so I had a long, narrow and flat foot. So I remember wearing these brown shoes that had a weighted heel, and I didn’t understand why it had the weighted heel. And I remember always scratching the opposite foot at the medial malleoli, and that’s the inside of your ankle. And then after that, I just remember in about the fifth grade, going to Bob Billis because I had an abnormally large foot to get some sandals.

Dr. Jennifaye Brown 8:09
So that’s when I started this empathy thing, when I went to college and I placed a sorority and we all had to wear the same shoe. So imagine my line sisters. There were eight of us. I they had to get what could fit me, basically. And I just remember us being in, you know, kids, back in the day, we got green pears because that was the name that was the color for our sorority. So kids and that was the color of our sorority.

Dr. Jennifaye Brown 8:43
So the first thing, if I had that much difficulty, imagine with what my patient or client would have, number one, affordability is the key. Now that’s the main issue. So my thing is, why can’t we make a brace to fit in the shoe that they already wear, and the shoe gives us a hint of their walking pattern. If you take the inner sole out, I see all the weight bearings of the foot. So now the bottom of the AFO should replicate what the looks like, and then I can look at the outside of the sole of the shoe and see if the heel is worn on the outside or the inside.

Dr. Jennifaye Brown 9:28
And that tells me if they’re a supinator with the high arch or pronator with the low arch. You don’t want to change the dynamic of their foot, but you want to change the propensity of them to use what they have and supplement what they don’t have in order to propel the body forward. So then my AFOs had to be made narrower.

Bill Gasiamis 9:56
So did you have to wear AFOs as a result of. Your feet?

Dr. Jennifaye Brown 10:01
No, I just had to get orthotics, and I have some in my shoes now, at about $300.

Bill Gasiamis 10:08
A pop for the pair of orthotics on top of the cost of the shoes.

Dr. Jennifaye Brown 10:14
Yes, $300 plus. And then we take some of the liner out, and then my petty orthotist put some stuff in. And this is why I think I spend so much time and attention to the ankle, foot orthoses, the AFOs for my clients. And if you look in the book, like maybe in the 50s, the late 50s, I have maybe a dozen pictures or so of every custom AFO that I’ve done the prototype for, and then the orphan is finishes up with the nice plastic, and we collaborate on that everyone is different.

Dr. Jennifaye Brown 10:51
I’m not the girl. You don’t come to me to get a small, medium and large from Amazon or off the shelf. You come to me to get the AFO to fit in your shoe that you want to walk down the aisle when you’re getting married, or if you’re going to play nine holes of golf, or if you want it to fit in your boot for duck hunting.

Bill Gasiamis 11:10
Let’s pause for a few moments. You’ve just heard Dr Brown describe what happens when a brace is designed without taking the whole person into account, your strength, your gait, your shoes, your style, your soul. And if you’re sitting there thinking, that’s why I stopped wearing mine, I want you to know you’re not the problem the system might be. You deserve a recovery that fits your body and your life. If you’ve ever felt like your brace wasn’t made for you, drop a comment on YouTube and tell me what’s been the hardest part about using an AFO after stroke also.

Bill Gasiamis 11:45
Thank you to everyone who keeps this show going, those of you supporting on Patreon, those of you reading and sharing the book, and those of you who’ve hit the super thanks button on YouTube. All right, back to Dr. Brown as we dive into the hidden emotional toll of wearing the wrong brace and how the right one can change everything. Okay, so let’s continue to go back a little bit.

Dr. Brown’s Career Path and Educational Background

Bill Gasiamis 12:11
How did you get into the field, the career that you found yourself in? Was it out of the frustration of what you had to deal with, with the challenges regarding your feet, was it just one of those things that happened, because it seems like you had a problem, and then you focused on it a lot, and then you came up with a solution. You thought, let me get educated in this space, and then, therefore, let me offer the problem solutions to people. It seems like a beautiful, seamless path towards where you are now. So tell me about your background, educationally, and your schooling.

Dr. Jennifaye Brown 12:50
We’ll start off at college. Bill. I got a full scholarship to go to Georgetown University with the I think, biology, because I was going to be a pediatric surgeon, I was going to be a doctor, and my Daddy took me up to visit, and I told daddy, it looked like Gotham City from Batman, and it really did. It really did. Now I’m a Southern Bell, so I made him pay, and I went to Emory in Atlanta, and then I took all the pre med courses, and I wasn’t really good at them, strong at them, but I was much better in the life sciences, anatomy, kinesiology, social psychology. I was really good with those.

Dr. Jennifaye Brown 13:32
So by the end of the spring of my freshman year, I knew I wasn’t going into medicine, and I went to the Allied Health Fair and physical therapy was at the table, so I talked with the person, and she said, why don’t you come to the hospital and volunteered? I started volunteering, I would say, in March of that year, and volunteered until I graduated. I got into physical therapy school. Duke was my number one choice. I didn’t get in. I got into the University of Miami, and we started school before my graduation from Emory.

Dr. Jennifaye Brown 14:12
So I went on to Miami and came back and graduated, and I did really well at the University of Miami. My GPA was higher there than it was in undergrad, and we learned a lot of great skills. Most of my professors were board certified in something, and that challenged me to become board certified, and it also challenged me to get a PhD, which I did later on in life. So when I looked at my faculty, they were board certified and had a PhD. So they research things, the only difference, I would say, between me and most of my PhD classmates from that class of 1990 My research is in quality.

The Importance of Customized AFOs

Dr. Jennifaye Brown 15:00
TATIVE methodology. I want to know what the people say and what the people think. The statistical key value doesn’t mean that much to me, and I am everybody wants to be able to walk again and know if their strength is going to come back. Well, the AFO does two things. It helps your walking come back, but the way it’s made it, it decreases the chance of your strength coming back, if it has the potential to come back. So that’s when I knew I had to start making my braces differently.

Bill Gasiamis 15:38
So there’s a potential for the AFOs to what do they do? Because I haven’t had one, and I know some people who have them, and most people that I know who have them will have some complaint about it, the way that it feels, the way that it fits, and sometimes even people are concerned that it’s going to change their posture, or that’s going to change their gait. And sometimes they’re also concerned that as a result of the AFO, they have some issues, you know, in other parts of the spine, on the back, etc, because of the way that it fits and feels, etc.

Bill Gasiamis 16:14
So what are some of the things that you’ve found that, and before we get to that, actually, is it generally a standard AFO that everyone gets when they go to a hospital and they have foot drop after stroke. How do they actually get assessed for an AFO?

Dr. Jennifaye Brown 16:36
Funny, you should say that the normative model, the normative model is that, oh, the orthotist is coming to cast you for an AFO. And I was like, No, the orthotist needs to get data about the person’s strength, range of motion, sensation, tone, spasticity, the ability to generate force to stand and to walk. That’s a whole lot of data that we should be giving the orthotist and discussing.

Dr. Jennifaye Brown 17:09
It depends on where the lesion location is, how large it is, and the time without oxygen, for the severity of the what we call the cortical spinal tract, particularly the lateral cortical spinal tract, because it goes to the leg and the foot. And so you have to take all of that into consideration. The AFO that I make for a mother postpartum who’s had a stroke.

Dr. Jennifaye Brown 17:40
Maybe up in the cortex, where fewer of the motor neurons are damaged is very different than the AFO that I’m going to make for someone in the in the subcortical region, or down towards the brainstem, where all the nerves are bundled together and they get input from other tracks, and so I have to look at where the lesion is, how large it is, and the extent of which it’s damaged. Because if it was just a little bit of damage, I can depend on motor neurons surrounding the damaged area to take over for those damaged neurons.

Dr. Jennifaye Brown 18:23
But I have to feed into that, and we don’t feed into that. So that’s the first thing you have to do. You have to know lesion location, the severity and how large it is. The second thing is that we as physical therapists, we need to do a thorough examination, and the critical part that we’re missing in this, in the examination, I’ve already mentioned about five or six things we don’t talk to the patient. What is it that you like to do? Did you exercise beforehand? Were you what physical activity that you engaged in what do you do for fun? What do you wear on a normal basis?

Dr. Jennifaye Brown 19:07
Everybody in Charleston wants to wear a sandal so that they can go to the beach. So I gotta make a different AFO for that. And if it’s a lady, I had a secretary, she says, I wear skirts all the time. I don’t want that. I can’t I’m not going to that’s not going to look good with the skirt going to work.

Common Issues with Standard AFOs

Dr. Jennifaye Brown 19:27
And this is another thing I have to pay attention to people, because there’s this appearance on the outside that they find more valuable. But I have to tell them you are who you are from the inside, and I need that to shine through. And that’s a hard concept for people to gather because first of all, they’ve already had a stroke. Now they look funny. I’m hobbling on one side. I can’t lift my arm up. I got a jewel on my face. And then. Now you gonna make me wear this brace that doesn’t look good with the skirt or dress on?

Dr. Jennifaye Brown 20:04
The men really didn’t have any problems. You know why? You don’t have to see it in some pants when you wear long pants, but when it’s shorts, the men really didn’t have an issue, compared to the ladies, and they’re used to wearing sneakers or men’s shoe that either had some, you know, ties, and it’s easier for the ties in the men’s shoe to change than the intricacies of a woman’s shoe that usually doesn’t have any ties or anything like that, you know, you wear espadrilles shoe or something like that, or a sandal sling back, or something like that.

Dr. Jennifaye Brown 20:43
So again, lesion, location, severity and size, the actual examination. And then let’s turn to the patient themselves. Okay, there may be things, tone, specificity, issues like that. And the reason why they don’t wear the brace because, number one, the way the brace is made, it doesn’t fit like a glove. When I do my braces, I want them to fit like a glove. Number two, the brace does stop them from doing certain movements. The most important when you go from sit to stand, your knee moves forward. The traditional brace has a velcro strap that’s rigid.

Dr. Jennifaye Brown 21:29
It goes through a metal piece, a loop through a metal piece, and then it comes back and stick to the loop. If you stop forward progression from sit to stand, you stop forward progression, and walking that brace that has the strap at the calf is the number one culprit. The second strap are the two straps across the ankle to keep the heel seated in the brace. If you have a strap that keeps the heel seated in the brace. There’s a problem when the measurements were made, they weren’t made adequately to adjust for ankle range of motion in different positions.

Dr. Jennifaye Brown 22:12
Under different contexts, different positions, supine, laying down, sitting and standing. I take measurements for my ankles in all three positions in school, I was taught to do it laying down when I went to my continuing education courses, most of which were orphans, because I like to work in a team. We started the sitting with the knee bent and the knee straight. Never was I taught in an advanced class to take the measurement of the ankle in standing, and that’s so important. So there after those two straps cause two different things.

Dr. Jennifaye Brown 22:57
If your knee can’t bend and you’re trying to walk, you have to hike your hip. In the hiking of the hip causes low back pain. So I had people coming to me, Oh, I heard you. The Walking spread. They come the gate specialist, you’re the one. I have this back pain. Can you help me? I said, we need to start at the toes and move on up. What does your brace look like? So when the brace is stick like this at the bottom, your foot’s not like this. Your foot is like this. It’s rounded and have arches. There are three of them.

Dr. Jennifaye Brown 23:30
So the bottom of the foot should look like the weight bearing sole of your shoe. And if you want to walk, you have to roll over your toes. So the portion of the AFO needs to be nice and flexible. If not just take it off. You don’t need it. I believe in an ankle where your ankle, the leg part, the tibia part, can move forward, but you don’t have the rubbing of your what we call the male eyes, so your your outside ankle and your inside the little bones that stick out, and all you have to do is flush that out, shave it off, or put something there to prevent the rubbing, if it’s not needed, remove it.

Dr. Jennifaye Brown 24:18
And what allows the tibia to move forward and backwards. I use spandex strap, and the spandex strap tension depends on how strong or how weak the person is. In PT school, we learn to measure people from zero to five. You raise this segment up, hold it there. Don’t let me push on you, but muscles are strong three ways, concentric on the shortening part, isometric on the holding part, and then eccentric on the lengthening part. Okay. I began testing muscles all three ways.

Dr. Jennifaye Brown 25:04
I went against the grain, and when I started going against the grain, I determined which type of band they needed at the calf muscle, off the top of their leg, below the knee, and then up their ankle. I never crossed over like this. Why? Because you have a tendon on the inside top of the ankle that pulls your foot up. If I press down on it, it won’t work. So if your foot is rolling up, if it’s rolling up, I start from the outside of the foot and bring a strap down towards your big toe.

Dr. Jennifaye Brown 25:45
In order for you to get your leg forward and do it forward progression, I need the foot to come down and I need the tibia to go forward. And I solved two problems, and that’s the main way. My AFOs were different, and people were happy. Number one, they fit in the shoe that people needed. Number two, they were flexible where they needed to be, but then stiff where they needed to be. And number three, I changed the whole concept of this strapping. And I would say, my first five or six years of therapy, I was making hinged AFOs after I started going to specialty courses.

Dr. Jennifaye Brown 26:32
And I knew the price of those hinged AFOs and how they made for you to buy a wider shoe, and they Didn’t encapsulate the heel, I stopped making them. And guess what, all of my, about 90% of my clients, were able to walk better, and they weaned out of their ankle, foot orthosis. And they didn’t have a whole bunch of falls. Actually, I had quite a few who went back to running.

How AFOs Affect Balance and Movement Strategies

Bill Gasiamis 27:00
So the AFO is responsible for a lot of falling as well.

Dr. Jennifaye Brown 27:04
Yes, because you can’t move the tibia. If it’s stuck like this with the band here and stuck at the ankle down here, you can’t do this. So if I want to maintain my balance, I have to have what we call an ankle synergy, so your tibia has to move forwards and backwards. I have to have a hip synergy, where I move at the hip, or I have to have a suspensory synergy, which is, you lower your trunk towards your feet. Or I have to do a stepping strategy.

Dr. Jennifaye Brown 27:37
Well, most people can’t do a stepping strategy because you can’t bend at the ankle and bend at the knee to take a nice step forward when you’re walking.

Bill Gasiamis 27:50
So what you’re telling me is that when most people get fitted for an AFO, they don’t go through all of that detail. Somebody just turns up and says, give me your leg. Let me take some measurements, let me cast it and let me get something back for you that in that next stage where they get back the first cast of the AFO, for example, is there tweaks? Do they try and fit it anymore or or not? How does it kind of work?

Dr. Jennifaye Brown 28:22
They do, okay, so I gotta preface this, when they’re casting, they tend to bend the knee and bend the foot up to get the best range so that the cast can be set in neutral. But when are you walking? Where is your knee bent at 90 degrees and your ankle is at neutral and your foot is on the ground? Never. So that’s the first thing, and then the second thing, most people are scanning the foot now.

Dr. Jennifaye Brown 28:57
And when I was at Ohio University, I was in the midst of writing a grant, and we were going to do an algorithm for scanning the foot and how to make changes in the CAD CAM model so that the AFO could better fit the foot. And we wouldn’t have to do all these changes on the back end. If you went through the full process on how an AFO is made, you wouldn’t believe why it doesn’t fit properly. So now I can get back to the question that was asked, Are there tweaks? Yes, and the number one tweak is, you have too much space someplace and not enough the other place, and it rubs.

Dr. Jennifaye Brown 29:43
So they tend to rub on the balloon here, and then the foot goes out like this, and it tends to rub on the lateral part of the ankle, on the bone that sticks out there. And the reason why is because the heel is not seated down. Or when they took the cast. So if you see this, AFO is curved in this person was coming in at the heel, and it needs to be a little bit more neutral.

Dr. Jennifaye Brown 30:13
Now, if they have a contracture here at their heel cord and it doesn’t move, I would add a lift right here on the outside, so that now they’re like doing this, and over time, I could get that contracture to stretch out. But if it’s a true construct contracture, the doctor has to go in and put holes, because I don’t they very rarely. Or do they do the Z lengthening, they go in and punch the holes, and then they put you in a cast and reset. So I think that the major problem is that they heat it up, they move it away from where it’s rubbing, and they add a pad, but then it doesn’t fit in the shoe.

Dr. Jennifaye Brown 31:00
And I tell all my clients to get a deep toe box. And if they widen the brace, you put the brace in, and then the top of the toe part goes down, and then your knuckles are rubbing on top of the shoe. So I tend to see that problem. So yes, there is some tweaking done, and this is when a lot of tweaking had to get done. There came a part point in time in the United States where you couldn’t get your AFO while you’re in inpatient rehab. Personally, I think that’s too early to get one because insurance has changed. People rush to inpatient rehab.

Dr. Jennifaye Brown 31:39
You can only stay there for so many days, and then you’re to outpatient or home or the depending on the severity of your stroke, you’re at a subacute like a nursing home. There’s something called the cascading effects of stroke. Your brain is healing after stroke six to eight weeks later, at eight weeks you’re already home, so there’s no need to give you a brace that early in the process. We need to give you something to pull your foot up. So for everybody listening, if you’re in inpatient rehab, you haven’t been discharged. They don’t have an AFO for you, use an ace bandage, use theraband.

Dr. Jennifaye Brown 32:24
Tell them to come up with a mechanical way to hold your foot up. Or, when I was at one of the facilities where we worked, and I developed a book and a protocol, we were able to use pastor of Paris material, whatever you want to call it now, fiberglass, and we could make an A training ankle, foot orthosis 45 minutes to an hour. And we had people up and walking, and we made it so that it accommodated their foot, fit in their shoe as is. Don’t go out and get a larger shoe, fit in your shoe as is.

Dr. Jennifaye Brown 32:58
And they were walking better, and they were training in this ankle foot orthosis made out of fiber fiberglass. I started, it was Plaster of Paris, and then we went to fiberglass. And so the tweaks happen at that point in time. The issue is no longer making the ankle foot orthoses in house. They were sending them out. And I the last time that happened to me in Charleston, I said, Had I known you were going to send it to North Carolina, I would have just made I would have come in the shop with you and made it here in Charleston.

Dr. Jennifaye Brown 33:32
And I did have some orphans who worked with me that did that with me. But you know, you have to use who the insurance tells you to use. And they sent that one off. When it came back, I said, we need to change this, this, this, this, and this, and and so we the changes were made that person because of the seriousness of their stroke and their impairments, they did not wean out of their ankle foot orthosis. Did their walking look prettier and normal? No. Was there walking faster and safe? Yes.

Dr. Jennifaye Brown 34:11
Did I train him to get up off the floor in case he had a fall? Yes, and he could do that with men to mod assistance, unless if there was a sturdy chair or a mat, and I taught him how to crawl and how to put the chair against the wall, and his wife was taught how to help him get up off the floor. Now that it was a lot of work, but he came to me a year after his stroke and not walking a year, and we were able to get him walking with a better fitting AFO. The AFO came to me and I said, this is not going to work. And we made all of these changes.

Bill Gasiamis 34:50
So he had that AFO for a year, that first one.

Dr. Jennifaye Brown 34:54
He didn’t even have an AFO. He came to me and he was not walking period. Ah. Are. They gave him a Hemi Walker, and he just started standing when he came to me.

Bill Gasiamis 35:05
So there’s a lot to it, because I haven’t come across one and I haven’t needed to. There’s a lot to it. There’s also the AFO, how it impacts the persons being able to get up off the ground if they happen to find themselves on the ground?

Dr. Jennifaye Brown 35:19
Yes, because when you get up off the ground, you want your foot in front of you and your knee towards your toes. That’s about 20 to 30 degrees of what we call ankle dorsiflexion. It’s hard to get up from the ground with your leg like this. You got to get your knee forward, and then the other leg in the back on your toes, and you have to push off. I always tell people to put the weaker leg from the stroke first, because if you put the stronger leg in the back, and if you have something, what we call extensor tone, your leg will be locked like a board, and you cannot bend it to get up.

Dr. Jennifaye Brown 35:57
So I train people both ways, but predominantly I put the weak leg in front. Why? Because load and weight bearing send sensory information back up to the brain to get better motor output.

Bill Gasiamis 36:13
So people listening to this podcast, there’ll be a number of them who have foot drop and who wear some kind of device, be it the stock standard one that you get when you get fitted, or another one where they’ve tried to find the right person to help them. Yes, are there? You know, your United States is massive, and you can’t possibly service everybody. So do you guys have some kind of a organization?

Bill Gasiamis 36:44
Is there a group of people who have similar thoughts in the way that AFOs should fit? Is there a community where people can reach out to and understand and learn more about how to solve their own personal AFO challenges.

Dr. Jennifaye Brown 37:04
The answer is “No”, and that’s why I did the research and came up with the book. And I would tell someone who got an off the shelf AFO that’s just a plastic one and their knee cannot come forward, go to a company called 3m or I think Smith and Nephew has been bought and it’s rolling Preston, I would get the two type of tensions, a rigid, more rigid tension, and then, if you’re not that weak, this is by a company called Med flex, and this is vel stretch.

Dr. Jennifaye Brown 37:41
It has 55% tension. But then this one is really stiff. So that’s if you’re really, really weak, I would that’s the first thing I would do. I would tell them to allow the tibia, their knee, their leg, to come forward and sit, to stand, and when you’re walking, that’s the first thing I would say, allow that leg to come in from sit to stand, so because you’re driving the force backwards, this is why people’s knees are hyper extended. Hyper extension is not always a problem of increased tone. It’s an ankle plant reflection you from a contracture.

Dr. Jennifaye Brown 38:24
It is from weakness at the gluteus Max and proximal hamstring muscle, and then the ground reaction force is in front of the ankle, because we’ve put a AFO on with a solid strap that prevents the knee from coming forward. So where can it go? Courts? If you’re trying to go forward, you can’t. And so that’s the first thing I suggest. The second thing is, if you don’t have a toe curling problem, make sure your AFO the foot part is flexible.

Dr. Jennifaye Brown 38:58
And then talk to your orthotist about where should we shave it down or make it flexible by heating it up and spreading it out so that you don’t get what we call abnormal foot reflexes? That’s a whole different story on itself, because people aren’t accessing, aren’t assessing for pathological reflexes of the foot, and that’s a sensory input issue. And again, I have some pictures in the book where the foot plate looks a little odd. It looks like a roller coaster.

The Role of Physical Therapists and Orthotists

Dr. Jennifaye Brown 39:33
Well, I have a little bump on the lateral end, under the toe, so if you feel that, you feel that bump, you’re going to go, oh, gotta go like this, and you’ll pronate. So I do. I’ll put little sensory things down in the soul of the AFO so so it stimulates an opposite motor reaction. So that’s what I would tell people. Get a different strap, a tension strap, and if you. Find these. Everybody has white, theraband, yellow, theraband, green, theraband, blue, theraband, let the theraband be your tension strap.

Empowering Stroke Survivors with Information

Bill Gasiamis 40:11
So the book, is it a technical book? Is it a book for other therapists? Is it a book for stroke survivors? You know, who is it for? Who can pick this up? Read through it, some of the stuff that you’ve said today kind of makes sense in a overall scheme of things, you know. But I don’t know all the anatomy and all the other fancy words, but I get the whole entire conversation like, I totally get it. So is the book an easy read? Who will benefit from reading the book.

Dr. Jennifaye Brown 40:43
It is an easy read. I had a person with a stroke read two versions, the versions that was made for Jennifaye, talking to another therapist, and the book that Jennifaye made, talking to an individual with stroke and their caregiver. The second one won out, because I wanted to address the caregiver and the individual with stroke, and for every paragraph, probably on the same page or within a few pages, there’s a picture to go with the paragraph. Second, there is a chapter for the physical therapist.

Dr. Jennifaye Brown 41:28
This is what you should be doing, and this is the right of the individual with stroke to ask you if you’re doing this right after that chapter, I have a cheat sheet. I said. Now when you go see the physical therapist, you ask them all these questions, and if they’re taking a little back, just use my name. Just say Dr. Jennifaye Brown said, I have a chapter in there for the orthotist, what the orthotist should be doing.

Dr. Jennifaye Brown 41:55
And then I have a a the next chapter is what you should be asking the orthotist to do? So it’s written to empower the individual with stroke, but the physical therapist said, I should be doing all of this. Yes, it’s right in the chapter, this is what you should be doing to get the person the best ankle, foot orthosis.

Bill Gasiamis 42:17
I can imagine I’m 12 months down the track, and I needed an ankle foot orthosis, and I didn’t know anything about it in in month one. How could I possibly so you start those conversations in a clinical setting, and you can’t contribute to the conversation 12 months down the track, after a difficult and challenging 12 months of trying to get up and about and and improve your walk. You might have more information, you might be more informed, and you might be able to contribute better and tell people what you need and where my channel.

Bill Gasiamis 42:50
But it’s, I think it’s really important at the very beginning, because that is going to create quality of life, that is going to improve recovery, that is going to improve walking and independence and all those things, and we need to decrease the time that it takes for people to get on their feet. And that’s where why I got excited when I discovered your book the first time you reached out, which was, you know, a year ago.

Bill Gasiamis 43:18
And thought, wow, this is exactly what we need to do, we need to give people information early on in the task, I have had the pleasure and the benefit of learning that people are listening to the podcast in hospital, and that is just unbelievable.

Bill Gasiamis 43:35
So hopefully some of the people watching and listening well, hopefully anybody who’s watching and listening in is on the path to recovery, and also as early on we’ve got them as early on in their recovery as we can, just so that we can give them another tool that they can look into and then start their own education about what they Yes, specifically need, about their foot.

Dr. Jennifaye Brown 44:03
You’re absolutely right. So in America here, I was very proactive for every major inpatient stroke rehabilitation hospital, I sent a card, just like a paper card to the rehab director about the book. So 218 or so to encompass health, the top 100 stroke certified hospitals with the inpatient rehab they got card if they were a chain like Jim Thorpe rehabilitation, they, all of them got a chain, every stroke rehab unit in a VA Center, VAMC, they got a car. So I was very proactive. And you’re right. They need to be empowered and educated early.

Dr. Jennifaye Brown 45:00
Early, and I wanted them to get this information in inpatient rehab, and most of those centers have an outpatient component, and so now most of the stroke support groups are at the outpatient centers. Well I probably could have done a little bit more better marketing for the stroke support groups, and a lot of those emails went to spam. But guess what? I’m calling all 800 and something of them now, one by one. We’re calling them now and letting them know about the book.

Bill Gasiamis 45:35
It’s sometimes you have to do the hard, yes, the hard work. You know, the cold calling so to speak and just speak to people and try and get them where you can. I I agree with that, and I love the I just love that the book exists and that it’s such a specific niche topic and subject, you know, you just often you hear people talking generalizing about a lot of things about stroke and stroke recovery, and it’s and it and it makes for people feeling like, well, that doesn’t apply to me, or it makes for people feeling like You’re not taking anything else into consideration.

Bill Gasiamis 46:22
It’s just too wide and broad, and that makes it really difficult. You feel like you’re falling in the in the cracks you know, between where there is information and where where there isn’t. And your book brace yourself has the subheading which says, you know everything you need to know about AFOs after stroke. I mean, it’s a very specific niche, and I just love that it’s so specific, and that people will be able to have this resource, this tool.

Conclusion and Call to Action

Dr. Jennifaye Brown 46:55
So let me tell you a secret. I had a client who had MS and her son, who’s in another state, found me online here in Charleston, and I did the evaluation, looked at the AFO, which was one of those off the shelf ones. We made one or two changes to that brace, which included the strap, and this is where we can get back to exercise. And then I said, What were your exercises for your leg to improve it so your foot doesn’t drop, because you have potential here? Oh, now they just told me to wear the brace. I said, Well, what is it that you want?

Dr. Jennifaye Brown 47:41
Well, I really would want to go without the brace and wear the shoes. And she had two different type of shoes that she really wanted to wear all the time in light. And you know, they are at this point in life where they do philanthropic things, so they’re going to these type of dinners and stuff like that. I said, No problem. Within a month, we had her out of the ankle, foot orthosis, couple of things that we did with her that she hadn’t had any training on. She started walking backwards.

Dr. Jennifaye Brown 48:10
She had to get eccentric lengthening of her anterior tip muscle to pull the leg up, and she had to get eccentric lengthening of her calf muscle so we could get the dynamics of the muscles to move in different ways, in different patterns. Not only was she told to walk backwards in her home after I trained her, she could loosen the strap on the brace when she felt weak, but keep it on inside a shoe, and she had to bend forwards, bend side to side, and then bend backwards and get something behind her. Well, we do those motions all the time.

Dr. Jennifaye Brown 49:00
Don’t you lean backwards when you’re going to squat on a toilet, don’t you lean forward, but you got to reach backward to wipe when something falls on the floor. You stabilize with one hand and you squat either in stride or with your feet together. She wasn’t doing any of these, any of those things, so I was doing two things. I was working the muscle in a shortened position, an elongated position, and then she had to hold it, which was an isometric position. And then I was loading the leg. She was getting sensory input. So when she decided, Oh, I think I can go without the brace.

Dr. Jennifaye Brown 49:41
Now, I said, okay, the minute you walk 10 feet in your house and your foot starts dragging, you need to put the brace back on. Well, guess what? She didn’t want to put the brace back on. So guess what? She started doing the exercises, and then I taught her how to advance the exercise with Thera band. And you pull the leg up. You hold it, hold it, hold it, and let it drop down slowly against the resistance of the Thera band. People are not doing isometric, eccentric or concentric exercises of the ankle, open chain and closed chain in order to get that proprioceptive input.

Dr. Jennifaye Brown 50:20
And that’s another reason why I think some of my clients are getting better. Now, does this work for everybody? No, it depends on where the lesion location is, how severe it is and how large it is. So someone that has tone, their leg is very straight and their foot is pointed down. They’re walking around their house in a crouched position. They’re loaded in flexion all the time, and once that normalizes to their brain. Well, Jennifaye, I was able to walk down the hall, and my leg didn’t get stiff, but it took us three months to get there.

Dr. Jennifaye Brown 50:58
That just tells me he had a large lesion down in the subcortical region in his what we call the lateral vestibular spinal tract is doing all this work because so much of his critical spinal tract that goes to his leg is damaged, but he’d rather do the work of walking in a big position and not having to hike his hip and drag his foot all the time or wear an obtrusive brace that he has to add a inch to one heel and an inch on the other side to walk.

Dr. Jennifaye Brown 51:32
So it just depends. It just depends. And I don’t think we’re we’re not doing therapeutic interventions based on the lesion type we’re giving everybody the protocol, okay? The protocol depends on social determinants of health.

Bill Gasiamis 51:50
Yes, that’s the thing. It’s not you people do not get personalized care and treatment, and that’s the biggest challenge. And I understand that there’s a there is an issue for that, and maybe it’s also part of the responsibility of the stroke survivor and the caregiver to say, Okay, you guys have done what you can. You’ve given me this stock, standard solution, and now we need to adjust it to fit our needs, our requirements. So it’s a bit of a two way thing, and let’s not just give the system a hard time, even though it probably deserves it.

Bill Gasiamis 52:26
We’ll we’ll give the system a bit of grace, and then we’ll just say to stroke survivors, now you have a little bit more information about some of the things you might be missing, and you could start that conversation with your own physical therapist, with somebody that can work. I suppose it’s like working with the AFO. It’s not just allowing the AFO to do all the work, is it? It sounds like some people get the misunderstanding that here’s an AFO, it’s going to help you walk, stay upright, not fall over whatever, and that’s it. Job done.

Bill Gasiamis 53:03
You don’t have to do anything else, and you can just accept that. Now find yourself 10, five weeks down the track, 510 weeks on the track, and the AFO is not working, and then it’s like, I’m not using this thing anymore. I don’t like it anymore. Okay? Well, you also haven’t done those other things, and you’re maybe giving yourself, you’re creating a situation where you’re learning, you’re creating learned non use, and that learned non use is what’s more likely to be getting in the way than the initial injury and the AFO, clearly, there’s a lot of problems that can be solved here.

Bill Gasiamis 53:45
And I think that’s what you are doing. You’re just going, let’s tweak this. Let’s look at that. Let’s just pay attention to the larger picture. Even though the book sounds very niche and focused in one spot, it actually is. It sounds like your idea and your thoughts and your concept is actually far more greater reaching.

Dr. Jennifaye Brown 54:09
You’re absolutely right. In the very last chapter, there’s something I call clinical pearls of wisdom, and I set the picture for the long term, your goal should be able to wean out. If you cannot wean out, you should be doing these things, not just because it’s good for your walking. It’s good for your heart health. It’s good for your brain health. If you don’t get back to normal walking, I still want you out walking. I love it, and I need you to break a little sweat, because when you walk at a faster yet safe pace, you release what we call brain derivative, neurotrophic factors.

Dr. Jennifaye Brown 54:56
And that’s that’s the vitamin that you. Need. That’s the good stuff. But guess what? You ain’t gonna get it if you work in 30 to 40% of your heart rate, it’s okay. We done checked you out. We know you on a medication. They done checked out your heart for AFib and everything else. It’s good for you. Heart Health is good for brain health. Let’s walk a little faster, break a little sweat.

Bill Gasiamis 55:21
I love that, and I often talk about the importance of exercise, but yeah, kind of I didn’t get I couldn’t get my head around that thing that you just said, which was that if your AFO is not supporting you, then you’re missing out on good quality exercise, even if it looks strange and that’s decreasing the health of your brain and your heart and the rest of your body, and we need to make sure that we maintain the entire system and and we’re supporting you.

Bill Gasiamis 55:52
And that’s what an AFO, a good AFO, can do. It can support the entire system and get you healthier. I love it. Yes. What a great and that I was gonna say, What a great conclusion to get to.

Dr. Jennifaye Brown 56:05
Yes, it is, and that’s why I want the AFO to be the best thing for that person. I want it to be the color of their skin. I want it to be able to fit in the shoes that they like to wear. Because even though they’re quote, unquote not walking normal, they are out walking, and that’s what’s important.

Bill Gasiamis 56:25
I love that. Where can people go and get some further information on yourself and the book?

Dr. Jennifaye Brown 56:32
So I have a website, J, V, B, neuro, P, t.com, I am on LinkedIn. I the YouTube channel is coming. It’s up. We’re going to be adding videos there about exercise the book. If you’re out of the United States and want to get the ebook, you have to go to my website to get the ebook. If not, if Amazon is where you are. You can order it from Amazon. I do signed copies from my website.

Bill Gasiamis 57:07
Fabulous. Obviously, the links will be in the show notes. People will be able to find out. They’ll also be able to reach out to you via the contact tab in your website, if that’s if they have specific questions, etc. And I just really appreciate you reaching out, letting me know about your book, giving me an insight into your process of helping and supporting people with AFOs. It’s absolutely fabulous. And thank you for being on the podcast.

Dr. Jennifaye Brown 57:35
Thank you so much for having me. My pleasure.

Bill Gasiamis 57:40
Well, what if the goal wasn’t just walking but walking your way? Dr. Jennifaye V. Brown reminds us that recovery isn’t about standard-issue solutions. It’s about honoring the complexity of your life, your body and your spirit, and choosing tools that support you. I’d love to hear from you in the comments. Have you ever felt like your AFO didn’t fit physically or emotionally?

Bill Gasiamis 58:05
Let’s keep this space a space where stroke survivors can speak freely, without judgment and feel deeply supported, and if something in this episode lit a spark for you, here are a few ways you can go deeper my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is a tool that helps give you insights and hope. After stroke, you can go and find it a recoveryafterstroke.com/book, and if this episode moved you, consider hitting the super thanks button on YouTube.

Bill Gasiamis 58:37
Every bit helps keeps these conversations alive. Stroke Recovery doesn’t happen in a straight line, but every step counts, even the ones that don’t look pretty. You’re not walking backward, you’re rebuilding forward. See you in the next one.

Intro 58:51
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on The personal experience of Bill Gasiamis.

Intro 59:22
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 59:46
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.

Intro 1:00:13
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there.

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Locked-in Syndrome and Recovery: Reclaiming Voice, Identity, and Life After Stroke

What happens when your mind is fully awake, but your body no longer responds? For stroke survivors living with or recovering from locked-in syndrome, that question is not hypothetical. It’s their daily reality, one that challenges not just the body, but the spirit.

But recovery, though complex and deeply personal, is possible. And today, we’re sharing a glimpse into one such journey, that of Harshada Rajani, to illuminate what’s really possible when the odds are high and hope seems out of reach.

What Is Locked-in Syndrome?

Locked-in syndrome is a rare neurological condition most often caused by a stroke in the brainstem, typically the pons. It results in complete paralysis of all voluntary muscles except for those that control eye movement. A person with locked-in syndrome is fully conscious and aware but unable to speak or move.

Communication is limited, often to eye blinks or coded systems, and the initial prognosis can seem grim. But this diagnosis does not mean the end of growth, joy, or even functional recovery.

Harshada’s Story: A Glimpse Into Locked-in Syndrome and What Comes After

At just 23 years old, Harshada was a second-year medical student, sharp, driven, and deeply passionate about pediatric oncology. When an unexpected stroke left her trapped in her own body, her life changed instantly. She couldn’t speak, move, or even blink.

But she was still very much there.

And so began her journey through locked-in syndrome and recovery, one built on persistence, support, and an unshakable will to be seen as more than a diagnosis.

A Slow Awakening and the Power of Small Wins

Recovery didn’t come all at once. Harshada’s journey started with passive limb movement, electrical stimulation, and what felt like endless waiting. But then, months later, a twitch. Then a flicker. Then the movement.

Over time, speech returned. Slowly. Word by word. Syllable by syllable. Even today, her voice is a product of hard-won effort, a symbol of how far she’s come.

(Note: In our podcast episode, we slightly sped up Harshada’s voice to better match the pacing of the conversation. This gentle adjustment allows for a smoother listening experience without compromising the clarity or emotion of her story.)

Writing Her Way Back to the World

With speech still difficult, writing became Harshada’s lifeline, not just as a communication tool, but as a means of reclaiming identity. Through personal essays, memoir work, and disability advocacy, she began speaking louder than ever.

One of her viral pieces, “I’m Entering My Hot Girl Era”, captured attention not just for its bold title but for its deeper message: that disabled individuals deserve to be seen as full, expressive human beings with style, sexuality, and agency.

What Stroke Survivors Can Learn from Harshada’s Recovery

Whether you’re newly diagnosed or years into recovery, Harshada’s journey offers powerful lessons:

1. Progress Can Be Invisible Before It’s Transformative

In the early stages, recovery might feel like nothing is happening. But internally, your nervous system is adapting. Small movements today may be the foundation for major milestones later.

2. Support Matters, But So Does Self-Expression

Harshada’s family and caregivers were essential to her progress. But her growth accelerated when she began expressing herself, first through writing, then through advocacy. Don’t underestimate the power of your story.

3. Hope is a Strategy, Not a Cliché

Even when doctors offered no clear path forward, Harshada chose to believe that something could get better. That hope, backed by consistent effort, created space for change.

4. Identity Isn’t Lost, It Evolves

Recovery doesn’t mean returning to who you were. It means discovering who you can become. Harshada didn’t get her old life back, but she found something new, powerful, and deeply authentic.

What You Can Do If You’re Facing Locked-in Syndrome or Severe Stroke Deficits

Start with presence. You’re still here. That matters.
Focus on what’s next, not what’s missing. Even the smallest action, like attempting to move a finger or blink with intention, is a beginning.
Use every tool available. Physical therapy, speech therapy, writing, adaptive devices, meditation, explore what resonates.
Find your community. Stroke can be isolating, but you are not alone. Podcasts, support groups, and survivor stories can connect you to people who truly get it.

You Are More Than Your Deficits

Locked-in syndrome is devastating, but not defining.

As Harshada proves, recovery isn’t linear. It’s layered. Emotional. Messy. But it’s also filled with potential, beauty, and rebirth.

If you’re walking this path, or wheeling, or blinking your way through it, know this:

Your mind still works.
Your breath still flows.
Your story is still unfolding.

And as long as you’re here, recovery is still possible.

Locked-In But Not Lost: A Stroke Survivor’s Journey Back to Herself

Trapped inside her body but fully awake, Harshada rebuilt her life word by word. This is her journey of hope, healing, and powerful transformation.

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Highlights:

00:00 Hashada’s Background and Stroke Incident
03:45 Stroke Symptoms and Diagnosis
07:42 Cultural and Philosophical Perspectives
17:09 Recovery and Rehabilitation
24:37 Academic and Personal Growth
32:56 Challenges and Empowerment
34:53 Fashion and Self-Expression
47:18 Impact of Social Media and Community
50:46 Overcoming Challenges and Achieving Goals
59:58 Final Thoughts and Encouragement

Transcript:

Hashada’s Background and Stroke Incident

Bill Gasiamis 0:00
Harshada Rajani was a high-achieving med student on a clear path until everything changed. What followed challenged her identity, her voice and her sense of control, and what she’s done since is nothing short of extraordinary. Now, before we dive in, you might notice something a little different about this episode. Harshada’s voice has been gently sped up by about 30% she speaks clearly and beautifully, but due to her experience with stroke and the journey her voice has taken to recover, her natural speaking pace is a little slower than mine.

Bill Gasiamis 0:40
I made this adjustment to create a more balanced and easier listening experience, one where our conversation flows at a similar rhythm, without losing any of her tone, insight or presence. If you’re a stroke survivor feeling stuck, dismissed or unsure how to move forward, this episode is for you. I’m Bill Gasiamis. I’ve lived through stroke, I’ve faced the silence, the fear and the unknown, and I created this podcast to offer the support that I hoped I had back then.

Bill Gasiamis 1:10
Harshada’s story is a powerful reminder that recovery isn’t about going back, it’s about becoming and if today’s conversation resonates, I’d love for you to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. You’ll find it at recoveryafterstroke.com/book. Harshada Rajani, welcome to the podcast.

Harshada Rajani 1:34
Thank you.

Bill Gasiamis 1:37
Did I say that well, or did I butcher it?

Harshada Rajani 1:40
No, it was pretty good.

Bill Gasiamis 1:42
Hey, tell me a little bit about what life was like before the stroke.

Harshada Rajani 1:48
So before my stroke, I was a typical young South Asian American Girl, really close family, lots of friends, lots of fun, but obviously, as with most immigrant families, academics was iur number one priority. So I was in med school and took before my stroke, and I wanted to be a pediatric oncologist, and I was dating another South Asian Doctor that was kind of picture perfect way.

Bill Gasiamis 2:48
And what happened with regards to the stroke? What did you notice leading up to the day of the stroke? Anything that gave you any signs that something was wrong.

Harshada Rajani 3:04
So nothing really. I had just gotten new glasses, and whenever I wore them, I would get a headache, and sometimes I would feel sensitive to life, and I went to my student doctor on campus, Student Health about them, and they said they were hemiplegic migraines.

Bill Gasiamis 3:41
Were you at campus on the day of the stroke?

Stroke Symptoms and Diagnosis

Harshada Rajani 3:45
So luckily, it was Thanksgiving weekend, so I’d come home, but I wake up and I was actually getting a second opinion on my migraines. And then suddenly, as the world started shifting and moving in front of me, I had vertigo for the first time, and then my parents took me to urgent care to get the shot, while the nausea that the verdict was calling and I passed out.

Bill Gasiamis 4:40
So the stroke was caused by a vertebral artery dissection. Yes, do you have any idea, any recollection when or how that occurred? Was there any obvious signs?

Harshada Rajani 4:59
It doesn’t it was spontaneous, which is good and bad, because there’s nothing I can point to and blame. Keep so it’s kind of freeing.

Bill Gasiamis 5:28
So the randomness of it is a bit of a blessing.

Harshada Rajani 5:32
I think so.

Bill Gasiamis 5:34
That’s interesting, because the blade that happened in my head, the artery, well, not the artery, the blood vessel that burst and started to leak. I kind of saw there as a random event as well. I didn’t know that it was there. I didn’t know it was happening. I lived with it for 37 years, and then it just happened. And I kind of felt like the randomness was okay, like again, it was something that perhaps my lifestyle wasn’t the best.

Bill Gasiamis 6:07
It may not have made my situation better, but I didn’t actually have something that I ignored. I didn’t have something that I should have done something about. Nobody knew. So it just happened, and it was one of those events.

Harshada Rajani 6:24
Exactly, the burden is taken off your shoulders a little, yeah, and I’ve thought about this a lot, because in our culture, where good things happen to good people, bad things happen to bad people. So disability is always seen as some kind of moral punishment for something done in this way, or the past life, so trying to unlearn that and taking control of the fact that it was just random.

Bill Gasiamis 7:16
Yeah, I like that idea of unlearning that specific cultural piece of stuff that people cling to or make, make, make part of the conversation, which then turns stroke into something that is taboo.

Harshada Rajani 7:38
Yeah, definitely.

Cultural and Philosophical Perspectives

Bill Gasiamis 7:42
How old were you?

Harshada Rajani 7:45
I was 23 so I was in my second year of medical school.

Bill Gasiamis 7:52
What nationality back? What background is it? What nationality?

Harshada Rajani 7:59
I’m Indian and Hindu.

Bill Gasiamis 8:03
Indian and Hindu. Okay, so that karma conversation comes into it?

Harshada Rajani 8:10
All the time. I guess people always are trying to find answers and explanations for why bad things happen, and I guess it’s whatever gives you hope, whatever makes sense to you. Have you read any of the philosopher?

Bill Gasiamis 8:41
No, heaven.

Harshada Rajani 8:43
Well, it talks about oppression, just it talks about how there’s no meaning to us a brain, no meaning that whatever happened in our lives. But as humans, we crave rationality and we crave an explanation, and that distance between wanting an answer and there not being an answer, he calls that the upside.

Bill Gasiamis 9:25
It’s so true. I mean the meaning is the only. The only meaning is the one that we apply to it. My meaning can be totally different from the next person and the next person, and they are both. They are all constructs. We’ve constructed the meaning of that event, and somehow, I’m not sure how it serves us, hopefully or it doesn’t serve us.

Bill Gasiamis 9:47
And we were and we become aware of that, I think if we become aware of meaning that we apply to something that doesn’t serve us, I think that that’s probably where you want to get to.

Harshada Rajani 10:00
Yeah, but everyone has their own time to reach that point.

Bill Gasiamis 10:07
Yeah, the correct that’s the journey, isn’t it? Everyone needs to go on the journey to understand and discover. Hey, it’s Bill here. I just wanted to pause for a moment, if you’re thinking, if you’ve been listening and thinking, this is the kind of support I wish I had more of, you’re not alone. Recovery can feel isolated. Recovery can feel isolating. Many of us know what it’s like to leave the hospital and suddenly feel like we’re on our own, no roadmap, no guidance, just trying to figure it out day by day. That’s exactly why I created the Recovery After Stroke Podcast.

Bill Gasiamis 10:50
When you support the show on Patreon, you’re helping ensure that no one has to go through this alone, not now and not in the future. Your support helps keep these stories alive for every stroke survivor currently in recovery, and for all of those who and for all of those who will come after us. I’m on a mission to reach 1000 episodes and beyond, because every conversation brings light, clarity and connection to someone who needs it. Visit patreon.com/recoveryafterstroke and consider supporting the show today.

Bill Gasiamis 11:30
What a journey from being completely locked in to becoming a powerful voice for disability advocacy. Harshada shows us what’s possible, not just physically, but emotionally, spiritually and creatively. Her story is a reminder that your worth is never measured by your deficits, and that healing is not always about getting back to who you were, but about discovering who you can become. If you’re listening to this today and you’re still in the thick of it, early days, facing setbacks or just plain exhausted, let this be your proof that growth is still on the table.

Bill Gasiamis 12:11
Here’s what I’d love you to here’s what I’d love for you to do. Reflect on Harshada’s courage. Try something new, even if it’s small, reach out to a friend, to this community, or to yourself. Thank you for listening, your reviews, your comments, your support. It keeps this show going, and to those who bought the book or join me on Patreon. Thank you so much. You’re part of something bigger than just a podcast. You’re helping stroke survivors everywhere. Find their way forward, stay connected, stay curious, and remember you’re still here and you’re still growing.

Bill Gasiamis 12:49
And that the story and the story is not over. I’ll catch you in the next episode, if you’ve been listening and thinking, this is the kind of support I wished I had more of, you’re not alone. Recovery can feel isolating many of us know what it’s like to leave the hospital and suddenly feel like we’re on our own, no roadmap, no guidance, just trying to figure it out day by day, that’s exactly why I created the Recovery After Stroke Podcast. When you support the show on Patreon, you’re helping ensure that no one has to go through this alone, not now and not in the future.

Bill Gasiamis 13:34
Your support helps keep these stories alive for every stroke survivor currently in recovery, and for all of those who will come after us, I’m on a mission to reach 1000 episodes and beyond, because every conversation brings light, clarity and connection to someone who needs it. Visit patreon.com/recoveryafterstroke, and consider supporting the show. Today, I had, I did, read a book many years ago, a small book about, I think, written about Buddha, or because of Buddha, or for Buddha. I’m not sure. I can’t remember the book and the actual title of it, but it was all about karma.

Bill Gasiamis 14:14
And my understanding of it was that karmic actions were as a result of ignorance, not as a result of events like something that happened to you in your brain. And for example, in my ignorance, I never, I was never aware that people in a wheelchair were potentially going through a difficult time or had some challenges that they had to overcome. I had this very ignorant idea that people in a wheelchair were just sitting down. I didn’t see beyond, you know, their physical situation. I just assumed, well, they’re going about life. They must just be sitting down.

Bill Gasiamis 15:00
Everything should be fine, but of course, after having spent some time in a wheelchair, I discovered that people in wheelchairs are not just sitting down. There’s a lot more going on that we are not aware of. And because I was never curious enough to ask or find out, I was ignorant, and my ignorance put me in a situation where it was difficult for me to wrap my head around finding myself in that situation later on in my life, when I was in my 40s.

Harshada Rajani 15:30
That’s so interesting, like it didn’t have the empathy. So the wild was like, Well, now you have to experience.

Bill Gasiamis 15:42
I here’s a little bit of what’s the word, here’s a little bit of life experience for you. And now that you know that, what are you going to do to remedy that? And for me, it wasn’t, I didn’t feel bad about it, but that lesson, that learning, that philosophical kind of teaching, allowed me to then gain that the I the understanding that things are far more complex and they’re not surface level is the tip of the iceberg, and that you need to, you need to go deeper as a result of that.

Bill Gasiamis 16:19
The Recovery After Stroke Podcast happened, and you know, we’re more than nearly 360 episodes in at this stage, and here we go. You know, it’s okay. I’m listening and I’m taking the lesson, and I am attempting to cease to be ignorant, even though I still am.

Harshada Rajani 16:42
No, I think this is great. I wish I had found this podcast when I had my but the Papa wasn’t around that.

Bill Gasiamis 16:54
It wasn’t because your stroke was in 2008 I had the first bleed in my head was in 2012 and like you, there was no nowhere for me to go and learn and discover and hear stories.

Locked-in Syndrome Recovery and Rehabilitation

Harshada Rajani 17:09
Yeah, online at that time was really, really negative, not helpful at all.

Bill Gasiamis 17:24
So when you experience the stroke, you ended up in hospital. How long were you in hospital for? When did you wake up? How long were you in the in the acute phase?

Harshada Rajani 17:39
I’m not sure that took. Me to wake up? I was on some Friday, every Saturday, so I was in and out, but then I was alone in the ice for three weeks, and we have a hospital for five months.

Bill Gasiamis 18:06
Did you wake up? Were you locked in?

Harshada Rajani 18:09
Yeah, totally locked in. I couldn’t even move my eyes in the beginning, some people didn’t even realize I was there?

Bill Gasiamis 18:22
Yeah, and would have been surreal situation to find yourself in, and then for the people that turning up to see you.

Harshada Rajani 18:33
Over here, that nurses talking like I wasn’t there, no one realized that I was.

Bill Gasiamis 18:46
Fully cognitive aware.

Harshada Rajani 18:53
My mom finally noticed my eyes looking.

Bill Gasiamis 19:00
Wow. Your story is familiar to me, because I’ve interviewed a number of people that have been locked in and Dylan, whose episode is not out yet, but it will be out by the time this episode goes live, and a number of other people who are locked in Duncan. Campling is another person who I interviewed who was locked in and he was in a similar situation, and he had global deficits, not only, you know, cognitive, but also physical, because the pontine is such in such a location, where if a stroke happens there, it affects both sides of the brain.

Harshada Rajani 19:48
Yeah, I was paralyzed bilaterally, from head to toe, including my vocal muscles. So just completely, I saw a prison, a corpse with living eyes.

Bill Gasiamis 20:13
A corpse with living eyes. How? How long after did rehabilitation start? The kind the rehabilitation where they took you away from hospital, and they were fully focusing on your physical recovery.

Harshada Rajani 20:34
So when we got to physical therapy, right away, but the man, I was like, What’s the point? It felt like such a permanent situation, like I didn’t realize anything was ever going to change, but we started physical therapy right away. First, it was just passively moving my limbs and lots of electrical stimulation and slowly, about two or three months, three months, I saw my left arm like whoever, and that was the first Big Thing. And for the rest of the year, slowly, slowly, there would be a muscle contraction, a volitional muscle contraction all through my limbs.

Harshada Rajani 21:55
And we just continued physical therapy. I don’t know how it is in other countries, but insurance will not cover many sessions on ongoing injury. So after I was discharged after about a year from the hospital, I started going to a place called Race to walk a narrow recovery gym, and I went twice a week for two hours. And I still do that to this day, but just over the years, the muscle contractions would get a little bit stronger, little bit stronger, and turning that into function has been hard, but I realized I’m definitely made progress, and I’m still making progress.

Bill Gasiamis 23:14
Yeah, fantastic. So the voice as well, when I meet people who have had a stroke like yours and have been locked in, have a similar speaking voice, their big breath and a big effort to get the words out. Is it effortful?

Harshada Rajani 23:36
Definitely, in the beginning, I can only get one sound out for breath and slowly expand to what it keeps getting better and better. We’ve worked a lot on my diaphragm to help with that, and I found a few tricks that have helped. But I think that’s why I’ve also gotten so into writing, because it’s easier and less applicable to get my words onto the page, then it is the speed my feelings.

Bill Gasiamis 24:29
Okay, so you prefer writing if you can.

Academic and Personal Growth After Locked-in Syndrome

Harshada Rajani 24:37
But then that’s why that muscle has developed in me.

Bill Gasiamis 24:48
So writing is more efficient. Perhaps there’s more effort to talk, and writing is a good way to communicate, but talking is also a. A real good training to help you improve.

Harshada Rajani 25:02
Yeah, definitely. And there’s direct human connection with talking. And I think I missed a lot when I couldn’t speak for so long. So I always appreciate that.

Bill Gasiamis 25:24
You’ve been writing for a while. Yeah, and your website, you have a little website where you show some of those writings. Yeah, have you ever considered combining them and turning them into a book or anything?

Harshada Rajani 25:47
I’m actually currently doing an MFA at Randolph Collette and a Master of Fine Art in creative writing, and I’m working on a memoir.

Bill Gasiamis 26:03
Excellent.

Harshada Rajani 26:11
That everyone can find online.

Bill Gasiamis 26:19
Okay, so the works, not the work that you’re doing there, is not necessarily publishable in a book format. You’re going to have to come up with a new idea. Yeah, as a master of, what was the master of?

Harshada Rajani 26:38
Fine Arts.

Bill Gasiamis 26:40
Yeah, you should be able to come up with something, yeah, okay, well, that would be a good project to get it out there. And the good thing about a project like that is publishing. These days, you don’t need to have a publisher. You can self publish.

Bill Gasiamis 27:00
When did you start your your university again?

Harshada Rajani 27:12
Last year, last summer.

Bill Gasiamis 27:16
Are you attending university at Campus?

Harshada Rajani 27:22
It’s a low residency program. So just the first 10 days of every semester I have to be on campus, then the rest of the semester is online.

Bill Gasiamis 27:40
Do you get somebody coming out to campus with you, to support you, to help you through all that?

Harshada Rajani 27:48
So, my caregiver stays with me.

Bill Gasiamis 27:53
Okay. How long are those days at Campus?

Harshada Rajani 27:59
9am to 10pm Yeah, because I’m trying to stuff an entire semester’s worth of stuff into 10 days. But I love it academics. I love all of that stuff.

Bill Gasiamis 28:24
Fair enough. It’s a big day for most people. I imagine at the end of the 10 days, you’re wiped out.

Harshada Rajani 28:34
Yeah, I just sleep.

Bill Gasiamis 28:37
You just sleep, yeah, how long before it’s complete? Before the course is complete? One more year.

Harshada Rajani 28:47
So four semesters total.

Bill Gasiamis 28:50
And what’s your living arrangement like?

Harshada Rajani 28:54
Right now? So right when I got back from the hospital, I moved back in with my parents, and that’s where I’m still living, my parents and my grandmother.

Bill Gasiamis 29:13
Okay, so you have plenty of support at home as well.

Harshada Rajani 29:16
Yeah, I have the same social support is so important through all this? Probably the one factor, I think, the right people will still make progress and still find the way forward. And people kind of like come through the darkness.

Bill Gasiamis 29:51
Yeah. How do you avoid that? Because even people who haven’t been through the stroke the way that you have will talk about the. Darkness, the difficult times and the challenges. How do you overcome that?

Harshada Rajani 30:28
Human connection? Feeling like people I feeling like people see you and hear you and value you, that makes you feel alive, but also you do need some hope, that thing might get better, tomorrow can be better. I wasn’t getting any further down. Feedback from my name my daughter, when I was in the hospital, no hope at all. But my family is really religious, so they always have been but they always have so much positive I can’t know I pushed me to have hope.

Bill Gasiamis 31:52
So hope is a really important like hope that things will improve. And I think you’re proving that things do improve, even though things are very challenging, you most likely in 2009 and 2010 weren’t talking the way you’re talking you. You definitely weren’t attending university.

Bill Gasiamis 32:21
That’s the whole point of this podcast, because people listening are very different ends of their stroke journey, and offering hope is really difficult to somebody who’s deep in the initial stages of recovery, you know, where things may be dramatic for them, and it’s kind of like, how do I sort of paint a picture for everybody on every interview that I do that things were terrible at some stage, and then slowly that improves and improves and improves.

Locked-in Syndrome, Recovery Challenges, and Empowerment

Harshada Rajani 32:56
And continues to improve. The only positive ever got from my doctor was one of them gotten close to me. I was just up, and she came up to me and said, It’s all up. I from here, and it was just like, so I opened it for me, and so empowering, I was able to helpful.

Bill Gasiamis 33:46
So that was kind of making you aware of the rock bottom moment, that that was rock bottom you had actually got there.

Harshada Rajani 33:55
Definitely, maybe a few levels deeper than rock bottom.

Bill Gasiamis 34:02
Fair enough, is there even a word for the level that you were at?

Harshada Rajani 34:11
I don’t really know.

Bill Gasiamis 34:13
Fair enough. I appreciate that. I mean, that’s an expression, again, of my ignorance right rock bottom, that’s as far as I know I’ve been there. Deeper than that, I haven’t been. Take my hat off to anyone who else who has been and come back from that. I really appreciate watching people overcome challenges and deficits and problems that stroke causes, it is so valuable for me to receive those stories from my stroke survivor community who has been on my podcast. I mean, that’s why I do it.

Fashion and Self-Expression

Bill Gasiamis 34:53
I do it so I can see what they’ve done so I can feel hope and inspired to continue doing what I need to do for my self. So I love, I love that you said that, that you found that rock bottom is probably just, it sounds like rock bottom is just like a like a basic level of rock bottom. And then there’s this other, more advanced levels, yeah, I hear you. Fair enough. So how old are you now?

Harshada Rajani 35:32
I’m 40.

Bill Gasiamis 35:34
So you’re you’ve lived with this condition, this situation, for quite a long time. I imagine you’ve understood a lot and learned a lot about yourself and other people and the challenges that other people face when they deal with you. What? What’s it like to to have had the the not the, what’s the word I’m trying to come up with, not the not the mental.

Bill Gasiamis 36:06
But the knowledge that you have about the situation that you found yourself in, and how people react to you and and how you People like in your situation, move in the community and in the world, that’s a big is that’s a big journey. You would have a deeper understanding of people, I imagine, than somebody else.

Harshada Rajani 36:36
That’s actually been one of the hardest parts, especially because I was so respected by my mind before my stroke, so then afterwards, feeling so dismissed and I slide up on people. Experiment so when people see me, they say my wheelchair. They say my first dead end, and they assume, since my body has broken, my mind must be broken too.

Harshada Rajani 37:27
Some people say the most ridiculous thing to me, dental hygienist was like, “Do we have a football just like favorite infantilizing, favorite demonizer and adjustment really harmful.” And I don’t think something I can ever really get past because people are interacting with them right there in front of you, and in the moment, find the courage to be like, hey, no, I’m actually a smart person treatment normally.

Bill Gasiamis 38:34
The mind it’s still there always has been, yeah, yeah. I and people like I might I may have early on in those days when I was ignorant, may make massive assumptions when they see somebody with the physical deficits that you have. Yeah, and then you know that you probably would have done something similar, and you may have even done that as well just be ignorant, which is, you know, it’s, it’s not an attack to say that, to use that word to describe myself for you, because it’s just the reality, and it’s if you haven’t been in a situation, how can you possibly know?

Bill Gasiamis 39:29
Have you had the opportunity to bring people around from their ignorance and to go hang on a sec. Come here. Let me just explain something to you, or you need to know this about me?

Harshada Rajani 39:42
So I guess that’s why I found so much empowerment with my writing, because you can read one sentence and know that I’m completely cognitive, right? Intact, and so I noticed some family friends who did once treat me like a child have now, after reading some of my writing, well, I directly address the problem with the way people speak to me. I’ve seen some of those people definitely become more attentive and understanding and not dismiss about me.

Bill Gasiamis 40:41
You made some pretty big you made some pretty big you ended up on the Today Show, I think. Did you end up in on the Today Show, in person or?

Harshada Rajani 41:00
Just website, yeah.

Bill Gasiamis 41:06
And it says, I’m sick of being the cute girl in the wheelchair. I’m entering my hot girl era. Why I’m done hiding my body, yeah. So what was behind that article?

Harshada Rajani 41:20
Yeah. So it was just kind of me trying to take back control of the narrative that people had placed on me, that I was this sad girl in a wheelchair and that bitch eaten with kiddie gloves, I thought down to like I was trying to wear the sweats black holes. Just tried to hide myself from the public, hoping that no one would say me. And then one day, I looked in the mirror with something I had stopped doing after my stroke, and that was like, I don’t look that bad. Like and I just started getting into cute clothes and crop fun dresses.

Harshada Rajani 42:35
I loved fashion before my Spro, so now it was a song as to embrace that part of my life again and read a book that didn’t mention the term weaponized grammar. And so it was kind of what you wear is making a statement to the world about the person you are. It’s kind of supporting their expectations of you. So I just found so much power in that.

Bill Gasiamis 43:18
Yeah, weaponizing glamor, you see people who are 30 years old and dressed like a 60 year old, whatever that, whatever that even means, right? But they just dress older, I suppose. And it’s like, Yeah, it’s interesting choice to notice somebody dressing that way. But what you’re saying is you’re you’re in a wheelchair. Perhaps your body doesn’t work or move in the way that it used to.

Bill Gasiamis 43:50
But that doesn’t mean I need to wear clothes that conform to potentially some kind of what wheelchair people in wheelchairs are supposed to wear, or how you’re supposed to dress, that’s not, there’s not a real how you’re supposed to do that thing. And what you’re saying is to better fix like it’s a form of expression you can express yourself in that way.

Harshada Rajani 44:17
Yeah, definitely, form of expression. I think that’s a really good way of funding.

Bill Gasiamis 44:29
Yeah, because you see rock stars and pop stars, you know they’ll have different hairstyles, they’ll have different hair colors, they’ll wear different clothes, they might have tattoos, they might have all these things. And it’s actually just a way of telling people, this is this is who I am, this is how I turn up. This is what I do, this is how you know I want you to know me, not only by the song that I sing or by, you know, the life that I’ve had or the upbringing or the challenges that I’ve faced.

Harshada Rajani 45:01
Also as a woman, it was kind of also where to take back my femininity. You can feel so infantilized and desexualized by the rest of the world, I’m still a woman.

Bill Gasiamis 45:31
Yeah, and nor should you. I love that. I love that idea that you’re taking back your femininity and that you’re going to express yourself in many ways, including and as a woman, definitely, yeah, a lot of people, I feel like, in my situation, even though I’ve been through my own challenges, I don’t think they would realize how, What’s the word, like, how, how disability like yours can take away all those things that make you your unique self because of the way that you are spoken about or treated or or looked at, and always through kind of like a medical eye.

Bill Gasiamis 46:19
Even if the person is not a medical person, they always look at you, okay, what’s wrong with her? What happened to her? It’s never, what shoes do you love or which lipstick do you use? Is that right? Would that be more conversations about your physical situation rather than your personality traits or your quirks, the things that you love.

Harshada Rajani 46:43
Definitely, it’s always like people passing me and a problem that needs fixing, and that’s kind of what frames the whole dynamic. So I think when they had to work for a while, well that’s not people who got reaction to disability and as people, just like anyone else.

Impact of Social Media and Community

Bill Gasiamis 47:18
Yeah, how? So if you had a stroke in 2008 no social media, basically no online world at that stage. How has that changed? That change of social media becoming a thing made a difference for you.

Harshada Rajani 47:41
I feel so much and so much less alone in what I went through at that time. My daughter was the only one. It felt so rare and so different and so huge, but now so many Facebook groups, people talking about therapies and what’s happening, supporting each other, and then really then disability actress and empowering the pleasure and right now.

Bill Gasiamis 48:37
I’m so glad for social media as well. I mean, I know there’s those parts of social media that people talk about I’m not so good, but I know that it’s been a massive thing for me as well, because it’s helped me find people my community. It’s helped me share other people’s messages. It’s so important, and it’s helped me feel even though I’ve not met many people that live near me who have had a stroke, where I can connect with or go to or hang out with or catch up with, even that doesn’t happen for me. So I needed the podcast to find my people, my community.

Bill Gasiamis 49:21
And it was, it was such a man, it was such a blessing, where, at your best, I’m based in Melbourne, in Australia. It’s a big, bad city. It’s got everything that you could possibly imagine a city and a suburb and all that kind of stuff has that. But you know, trying to get together with people and find people and bring them together at the same time and have them all overcome all their challenges to get to one location is really rare, and it sometimes happens through the Stroke Foundation, which is the foundation in.

Bill Gasiamis 49:59
Here in Australia that advocates for stroke survivors, but you know, they can only run events once a year or every so often, so you don’t get to catch up with that type of community very often unless somebody else is arranging it. So it’s good that social media exists. You and I met because of social media, and that was shared to you by Dylan, whose interview is going to go out a few weeks before this. So, I mean, that’s the most amazing thing to me. I can’t believe that this has even occurred, that we’ve been able to create this community and have 300 and nearly, nearly 360 interviews.

Overcoming Locked-in Syndrome Recovery Challenges and Achieving Goals

Bill Gasiamis 50:46
Does these long conversations fatigue you and the effort to talk? Does it fatigue you these days? Or have you become better at being engaged for such a long amount of time?

Harshada Rajani 51:00
Better, definitely, doesn’t really I wrote an article for a South Asian magazine, and because of it, I met a lot of other South Asian women in wheelchair, and that, I think, was so huge for my journey. They’ve all had their injuries longer than me. So they were I had much more insight and reflection about all that, so I was able to learn so much about like how to unlearn the things culture also say that they deal with The same issues I’m dealing with in my community, and just as human connectedness was also helpful, so that you can still have a good Life and a will too.

Bill Gasiamis 52:21
Absolutely I agree with that. Sometimes I tell the story of Stephen Hawking, the most amazing, you know, philosophy, physicist in his field, you know, extremely popular, very like the top of his, his, you know, topic of conversation, and the most amazing person, and then completely and utterly, totally disabled as well, and not being able to move any part of his body because of MND, I think it was or something like That, motor neuros, yeah. And I say that story just to remind people what people with serious disability have been able to achieve.

Bill Gasiamis 53:07
And say, I know it’s hard. I know it’s difficult. I know there’s a ton of challenges. I don’t know what they are, what it’s like, because I’m not there, but we need to look up to people like Stephen Hawking beyond his physicist accomplishments and and we need to say to people like you, need to head in a direction where you try stuff that you are afraid to try, that you’re worried about trying that you think is not possible, you know, and you need to get out of your own way and allow yourself to achieve the things that you don’t know, you can.

Harshada Rajani 53:54
Disability advocate, Judith Heumann.

Bill Gasiamis 53:59
Judith Heumann, I don’t know who.

Harshada Rajani 54:02
So I saw her on Trevor Noah’s late night TV show. Last time I’ve ever seen a power wheel to use a prime time TV and first I noticed a wheelchair, but as soon as she opened her mouth, the wheelchair was the least interesting thing about her. She has like, worked in the government and been on the front lines of disability advocacy in America, and it was just so important, so important for me to say that seeing a power chair, but saying laugh, how unimportant that was.

Bill Gasiamis 55:06
Yeah, I love that. I have a friend of mine here from Australia who is a stroke survivor. And Brooke is someone who had a stroke, I think, when she was 13 or 14, something like that, and she’s in an electric chair wheelchair, and she is now, I think, around 40 years old as well. And she’s a massive advocate. She’s involved in every study trial you can possibly imagine. She speaks at the conferences here in Australia. And a little while ago, she saw there was an opening to have a discussion on disability, some topic on disability, at the United Nations, and she applied, and she got accepted.

Bill Gasiamis 55:49
And in a couple of months time, she’s going to fly from Melbourne, Australia all the way to the United Nations to address the United Nations on her topic of stroke or disability or whatever. Yeah, isn’t it amazing, and when I said to her, like, what were you thinking about when you decided to apply, not from a not not from the perspective of, I don’t think you should have done it, but just curious about the way that Brooke thinks she goes, Well, I didn’t really think about it. I mean, there was an opportunity. I applied, I got it, and I’m going, so that was about it.

Bill Gasiamis 56:26
There wasn’t really much more thought about it. Of course, it’s her passion, it’s a topic. It’s something that she’s deeply knowledgeable about and has lived experience as well. So she thought it was a no brainer. I have to do this. I have to apply, and if I get in, I’m gonna go.

Harshada Rajani 56:44
And then we do overthink things too much, and that limits us from reaching for so many opportunities. I was like, that was going back to school too. Because I was like, How will I ever How will I ever be at school? How will I afford it? Like, this is so ridiculous. And then I just fell in love with this pro program and applied, and everything fell into place.

Bill Gasiamis 57:20
Yeah, and that’s a thing, right? You’re not going to solve the problems that you you don’t know are going to be there until you’re there. You can’t anticipate them all. You can’t possibly know the challenges that you’re going to face. You just have to go for and deal with them one at a time, if and when they arrive. Yeah, I really appreciate you reaching out and asking to join me on the podcast. It is an absolute pleasure to interview people who have the wisdom that you have, and who are willing to share it and are doing exactly what you’re saying, you’re practicing what you preach.

Bill Gasiamis 58:03
And that’s I love that. I just love the fact that you’ve contributed articles to places, that you’re writing, that you’re going to uni and getting more qualified. That’s exactly what we’re talking about. You know, you have to not just give up and think that things are not possible. You’ve got to find a way forward. I look forward to seeing what else that you achieve and what else you write, and especially if a book comes out of.

Harshada Rajani 58:40
It’s taken many, many years to get to this point, and then the first couple years, I was just so focused on getting my old life back, and only recently.

Bill Gasiamis 59:02
It’s a new life. Yeah, getting your old life back is probably unachievable for 99% of stroke survivors, and it takes some time for some people to discover that as well and to have acceptance of the situation they find themselves in.

Harshada Rajani 59:26
Everyone has their own that realization when I’m also realizing with what you’re saying, it’s not just 99% of struggle with them. It’s 99% of everyone. Life just changes on you.

Final Thoughts and Encouragement

Bill Gasiamis 59:58
Man, it showed that. Hey, thank you so much for joining me on the podcast. I really appreciate it. Well, what a journey from being completely locked in to becoming a powerful voice for Disability Advocacy, Harshada shows us what’s possible, not just physically but emotionally, spiritually and creatively, her story is a reminder that your worth is never measured by your deficits, and that healing is not always about getting back to who you were, but about discovering who you can become.

Bill Gasiamis 1:00:38
If you’re listening to this today and you’re still in the thick of it, early days, facing setbacks or just plain exhausted. Let this be your proof that growth is still on the table. Here’s what I’d love for you to do, reflect on Harshada’s Courage. Try something new, even if it’s small, reach out to a friend, to this community, or to yourself. Thank you for listening, your reviews, your comments, your support.

Bill Gasiamis 1:01:04
It keeps this show going, and to those who bought the book or join me on Patreon. Thank you so much. You’re part of something bigger than just a podcast. You’re helping stroke survivors everywhere find their way forward. Stay connected, stay curious, and remember, you’re still here and you’re still growing, and the story is not over. I’ll catch you in the next episode.

Intro 1:01:28
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis.

Intro 1:01:58
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Intro 1:02:23
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Intro 1:02:49
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The post From Locked-In to Lit Up: Harshada’s Story of Reclaiming Her Voice, Body, and Future appeared first on Recovery After Stroke.

Hemorrhagic Stroke and Congenital Heart Defects: What You Need to Know

When most people think of stroke, they picture an older adult, high blood pressure, or poor lifestyle choices. But for some stroke survivors, none of those apply. Instead, their stroke is the result of something hidden, something they were born with. That’s the case when a congenital heart defect leads to a hemorrhagic stroke.

What Is a Congenital Heart Defect?

A congenital heart defect (CHD) is a structural abnormality in the heart or major blood vessels that’s present at birth. Some are diagnosed in infancy, while others go unnoticed well into adulthood. In rare cases, these defects can weaken blood vessels, especially arteries, making them vulnerable to rupture.

How Can a CHD Cause a Hemorrhagic Stroke?

A hemorrhagic stroke happens when a blood vessel in the brain bursts, causing bleeding and pressure that damages surrounding tissue. In stroke survivors with congenital heart defects, the stroke often stems from a weakened or malformed artery. These defects might involve arterial webbing, aneurysm-prone vessels, or thin-walled connections near the brain.

Sometimes, these abnormalities aren’t discovered until after a catastrophic event, like a stroke.

Stroke Without Warning

That was the case for Larissa Cogan. At 43, she was fit, active, and thriving professionally. One morning, as she prepared for the gym, she collapsed in her home and woke up hours later, unable to move her right side. The stroke had been caused by undiagnosed webbing in her aortic artery, a congenital defect she’d unknowingly carried her whole life.

Stories like Larissa’s remind us that stroke isn’t just about lifestyle. Sometimes, it’s about what we’ve unknowingly lived with since birth.

What Should Stroke Survivors Know?

If you’ve experienced a stroke and your doctors haven’t been able to pinpoint the cause, it’s worth asking if a congenital defect could be involved. This is especially important if:

• You had a hemorrhagic stroke with no known risk factors.
• You’re young and otherwise healthy.
• There’s no family history of stroke, but something still went wrong.
  

Advocate for further scans or evaluations. A second opinion might be the first step toward peace of mind.

What Recovery Looks Like

Recovery from a hemorrhagic stroke tied to a congenital defect may follow a similar rehab path to other strokes, physiotherapy, occupational therapy, and emotional support, but the emotional impact can feel different. You might wrestle with questions like:

“Was this preventable?”

“Did I do something wrong?”

“Will it happen again?”

It’s important to know: you didn’t cause this. You were born with it. And with the right support system, like Australia’s NDIS program, emotional counseling, community, and rehabilitation, you can rebuild your life in powerful new ways.

Finding Meaning After the Shock

Many stroke survivors, including those with congenital causes, go on to discover post-traumatic growth: a deeper self-awareness, stronger resilience, and greater compassion. In Larissa’s case, what began as trauma evolved into self-confidence, advocacy, and the desire to help others.

“I’m more confident now than I was before my stroke,” Larissa said. “It made me realize what I’m really capable of.”

Final Thoughts

If you or someone you love has experienced a hemorrhagic stroke, and a congenital heart defect is suspected, know that you are not alone, and it is not your fault. There is life after this. There is strength. There is support.

And in many cases, there is a community of survivors waiting to welcome you and walk beside you on the road to recovery.

How a Congenital Heart Defect Caused a Life-Altering Hemorrhagic Stroke

A congenital heart defect caused her hemorrhagic stroke. Now, Larissa’s powerful recovery story is giving stroke survivors hope and insight.

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Highlights:

00:00 Larissa’s Life Before The Stroke
03:02 The Day of The Stroke
08:48 Congenital Heart Defect and Hemorrhagic Stroke
19:50 Hospital Stay and Initial Recovery
26:21 Challenges in Recovery
32:53 Navigating Life Post-Stroke
40:49 Ongoing Recovery and Support
47:21 Reflections on Life Before and After the Stroke
54:09 Advice for Stroke Survivors

Transcript:

Larissa’s Life Before The Stroke

Bill Gasiamis 0:00
Hello everyone, and welcome back to the Recovery After Stroke Podcast before we dive in a quick thank you to everyone who’s left a comment, reviewed the show, supported on Patreon, clicked the YouTube super thanks, or even just let the ads play. You’re helping more than you know.

Bill Gasiamis 0:16
You’re helping this podcast reach someone who might feel completely alone in their stroke recovery, someone who, like today’s guest, once did and was found lying on the floor wondering why they couldn’t move and had no idea what was coming next. Today’s conversation is raw, real and full of unexpected twists.

Bill Gasiamis 0:38
My guest was living a high-performing life, active, ambitious and on the rise when everything changed in an instant. If you’ve ever thought this shouldn’t be happening to me, or if you’ve struggled with recovery when the world expects you to bounce back fast, this episode is for you. Let’s dive in. Larissa Kogan, welcome to the podcast.

Larissa Kogan 1:00
Thank you.

Bill Gasiamis 1:01
Tell me a little bit about what life was like for you before stroke.

Larissa Kogan 1:06
So before stroke, I was working very hard. I also was training during that, CrossFit training and some competitions and and then, as well as that, I used to see my friends a lot and go out when I wasn’t working, or training.

Bill Gasiamis 1:27
What kind of work did you do?

Larissa Kogan 1:29
I was a digital producer, so I worked for a super fund, and, yeah, and so I basically managed the website and communications through the website as well.

Bill Gasiamis 1:45
So what were you focused on? What was your big focus during that time? Was it work? Was it physical fitness? Was it getting out and about?

Larissa Kogan 1:54
It was all three, because I was really looking like to continue working hard, but to ultimately like proceed in my career and get a better job. As well as that I loved training, and I loved the CrossFit competitions that I participated in as well, which was generally other gyms competing against our gym, or we would go to a venue where there are people from all different gyms, and would all come together and we’d be given a workout, and we’re competing against each other. And if I wasn’t doing that, I loved going out with my friends as well.

Bill Gasiamis 2:38
So you would have had your fitness or your health and well-being at a pretty high level, you would have considered yourself really healthy.

Larissa Kogan 2:45
Yeah, absolutely. I knew from getting like, body scans and things like that, that I had, like, quite low body fat and I was very fit.

Bill Gasiamis 2:57
Tell me about the day that the stroke happened. What was that like? What did you expect?

The Day of The Stroke

Larissa Kogan 3:03
Yeah, I was getting up about five o’clock as usual to go to the gym before work. And so that was around five o’clock. The last thing I remember is, is being is standing up and and looking at, I guess, what clothes I was going to wear. And the next thing I knew, I was face down on the carpet.

Larissa Kogan 3:25
And by that stage, it was like well into the morning, and yeah, and, but it didn’t feel strange to me that I was lying face down and and it and I looked around, and I could see on my left hand side that my phone was very close by on the ground, and so I picked it up to call my colleague to let him know I wouldn’t be in the office that day.

Larissa Kogan 3:51
I just I knew I wasn’t going to be in the office, but it didn’t feel strange to me that I was lying on one side, my right side wasn’t moving at all. But that also didn’t seem strange. I never felt pain or anything like that. And and so I called my colleague, and I said, Oh, look, I won’t be in today, but I’ll see you at work tomorrow.

Larissa Kogan 4:19
And that’s kind of what I thought I said to him. He told me much later that he actually like, because he knew something wasn’t right, it didn’t sound right, and it was, it was all very off. And so he apparently, he asked me, Are you okay? Like, what’s going on? And I said, Look, I’m not, but I’ll see you tomorrow.

Larissa Kogan 4:42
And so and by for whatever reason that I he was the person I called. If I hadn’t have called him, or if my phone had been too far away, or like I would never have, spoken to anybody, and also no one. It like he had the foresight, I guess, to to speak with my boss and and HR. And eventually they called my they called my next of kin. And so she tried to call me.

Larissa Kogan 5:14
She tried to contact me through social media, all the rest of it, and I just wasn’t answering. And so she knew something was not right either. She went back to HR, and from there, they sort of got the ball rolling with calling, calling, initially police. And so when the police came to my house, I was in a two story apartment, and they were knocking on the door, and I said, I’ll be down.

Larissa Kogan 5:43
I managed to answer my they and I just wasn’t answering. I could barely, really move or anything, and and eventually they called me, and they said, are you there? And I said, I am. I’ll be down in a second to let you in. I couldn’t move. And so eventually they broke the door down, or broke or they broke in and and when they came upstairs, I was lying like however, I was lying on the floor.

Larissa Kogan 6:11
And the male police officer just said, Oh, she’s ODed. Look at her. She’s Oded. He said, something like that. And the female officer that was with him. She said, I think there’s something more to it than that. And she was talking to me, and I was talking with her. No problem. Well, probably there was a bit of a problem, but I could talk with her, and I felt fine and and so they called an ambulance.

Larissa Kogan 6:37
By the time the ambulance arrived, they came upstairs to my bedroom. As soon as they saw me, they said she’s had a stroke, and they said that’s what we think has happened. Like you listen to her, when you talk with her, she’s lucid. Everything’s fine. She hasn’t ODed and so from there, then the day just continued on.

Bill Gasiamis 6:58
Did you get an apology from the police officer?

Larissa Kogan 7:02
The female officer actually came in, saw me at the hospital a few days later. Yeah, the male officer never heard from him again.

Bill Gasiamis 7:11
How rude.

Larissa Kogan 7:13
Well, like that day, like I have no real recollection of this at all, but by the time I got to the hospital, it was like, after one o’clock, like, quite a lot of time had passed by then. Yeah, so I’d been just lying, and that was the thing, I think I could see that I was, like, slowly, not able to move. I was just, I could, like I was starting to whittle away, I guess.

Bill Gasiamis 7:42
Was it registering yet that there was something seriously wrong?

Larissa Kogan 7:47
No, like, my aunt, um, actually said to me, like, when I got to the hospital, I was in emergency, I guess, emergency, or ICU, something like that. And they and she was talking with me, I don’t remember speaking with her, and she said, you were, you were like, You were completely with it.

Larissa Kogan 8:04
And, yeah, so it’s when I got to the hospital. They initially kind of assessed me, I think I was in ICU, and then from there, they took me to another hospital which had a specific stroke Ward and and I, apparently, I was there for a few days. I had, I had went into, like, an emergency surgery as well.

Larissa Kogan 8:28
And the at one point, they, they literally didn’t think I was going to survive. But, yeah, but I came good. And then from there, I went back to the original hospital that I was at, which is near my house and and then they put me in the stroke ward.

Congenital Heart Defect and Hemorrhagic Stroke

Bill Gasiamis 8:48
What kind of stroke did you have?

Larissa Kogan 8:50
So I’ve done some research on, I think it was a hemorrhage, a hemorrhagic stroke. Yeah, yeah. So what I had in my artery is webbing on my aortic artery. So it’s, it’s like the artery hasn’t fully formed. So it’s like parts of it were very, very, very thin and, yeah, and so. And that morning, for whatever reason, it just burst. And like, I didn’t have high blood pressure.

Larissa Kogan 9:20
I have, if anything, like, quite low blood pressure, and yeah, and it was just after waking up, the doctors actually told me later, they said you could’ve had this at any point in your life, like, because you were born with it, and it was just that particular part of your artery, for some reason, and it was like, as it was, sort of heading up towards my neck, that part of my artery was just very thin.

Bill Gasiamis 9:48
So you’ve been in hospital, well, it’s taken you almost like half a day to get to hospital. You finally get in there. They’re checking you out, they’re putting you through the scans and. Do you have a moment of understanding? When does that come? How long before you realize that you’re in hospital and you’re unwell?

Larissa Kogan 10:09
So I mean, the first few days I, like all my family, were called to hospital. My brother was called down from Byron Bay. People just they thought I was going to die as well, and so they all came in to the hospital and saw me. Apparently I was speaking to people in a room like I was lying down.

Larissa Kogan 10:27
But I don’t remember any of this, but from that hospital back to the one near my house, I kind of came to in that when I sort of came to, I guess, woke up from the surgery and all the rest of it, I was just lying in this hospital bed, and I just didn’t really know what was going on, and some and so this was, like, a few days later now, and I think my my aunt was actually everyone in my family was Amazing.

Larissa Kogan 10:59
They came and saw me every single day, but they it. I don’t actually know exactly who or when I was told I had the stroke. It was like sometime around then, and I just, I don’t know I guess I, it didn’t seem like a big deal. And I remember thinking, I remember just thinking, oh, you know, I’ll be back at work in like a week.

Bill Gasiamis 11:31
Let’s pause for a moment. We’re about 10 minutes in by now, you’ve heard a glimpse of how Larissa’s Life flipped upside down. And one moment, everything’s normal. The next, you’re unable to speak clearly, unable to move, and people around you don’t even realize what’s going wrong.

Bill Gasiamis 11:49
If you’ve lived through that kind of confusion where your body says one thing and your mind says another, you’re not alone, and if you’re still trying to make sense of what’s happening to you or wondering how to rebuild when you’re running on empty. I see you.

Bill Gasiamis 12:03
If this part of the story resonates, leave a comment on YouTube. What part of this recovery has felt the most invisible or misunderstood for you? Thanks to everyone helping this podcast stay alive. Super thanks. On YouTube, book purchases. Our Patreon members, you’re the reason I keep doing this. Now, let’s get back to the conversation with Larissa, because what came next was not what anyone expected.

Larissa Kogan 12:32
It’s nothing. And, um, one like in the I was in this stroke ward, I guess. And I was, like, on my bed. I couldn’t move. I had or couldn’t move my right hand side, which, and I was right handed, um, so, yeah, it was, I remember one night, I thought, I need to get up and go to the bathroom. And I thought, I’ll just get out of bed and I’ll and I’ll get there, and I just fell straight over. I ripped my leg open on like there was something sharp.

Larissa Kogan 13:08
And so this was about three o’clock in the morning, and I couldn’t even feel it like it was just and so then I had to go into, like, another sort of round of surgeries to get everything stitched up. Yeah. So there was a few things like that that happened and that that I suppose, was when I was starting to think, oh my god, like, I can’t move and, and the doctors at that stage couldn’t tell me if it was going to get any better.

Larissa Kogan 13:33
They they just didn’t know. I ended up living in the hospital because I went from this, like this, the specific stroke ward to, like, just living in another part of the hospital for about three months. Rehabilitation type Ward, yeah, yeah, like rehabilitation.

Larissa Kogan 13:50
But I actually stayed in the hospital and it was, there was a range of different types of people there, so most of them were elderly, and because it was palliative care board there. But then in the particular room where I was, the people were changing all the time. There were some very old people. There was, like, homeless people, things like that. I was sort of just in there with everyone.

Bill Gasiamis 14:19
So when you realize that you can’t walk, and you fall out of your bed, and then you injure yourself. Is there a w2, a TF moment like it was?

Larissa Kogan 14:31
I just at that stage, I was just still really positive that everything would be fine. And it’s it took. It took about a month to really think, oh, shit, you know, like, this is not just a you won’t just get over this and get back to life. It was it, but it even when I sort of got back home. By that stage I was, I was. Was like walking with a with a cane and but like, I still had to go up and down, like, my my apartment was on two floors. But then, as well as that, there was three floors. You had to walk up to get to my, my apartment.

Bill Gasiamis 15:14
Wow.

Larissa Kogan 15:14
So I had to sort of manage all of that when I couldn’t really move my right hand side.

Bill Gasiamis 15:20
You know, the kind of thinking that you’ll be okay in a month or in a week was that, just because you were stroke affected, your brain wasn’t working properly. Maybe because you didn’t know anything about stroke beforehand.

Larissa Kogan 15:35
It was a little bit of both. But, I mean, I did start to read up on strokes after that, like, I had my phone in the hospital was looking up and like, and most of the information I found was all about old people, and it’s it’s about the like, the ill health that they have as they get older. Whereas mine wasn’t like that. And I did actually ask my doctor, you know, do other can other things affect the stroke, like like that?

Larissa Kogan 16:03
And he said, It wasn’t you were born with this webbing on your aortic artery and and they only discovered that themselves when, when, I guess, I went into surgery, and I also had a stent put in as well, just as a precautionary measure to strengthen it.

Larissa Kogan 16:23
And as I started to read more about strokes and more about young people having strokes, because there was nobody in the hospital with me that had, was a young person that had a stroke at that time, and in fact, in when I went into the the day the in care, living it like the other part of the hospital. There was nobody there that that had a stroke that particular time. Mm, even, even the older people. So it was. But as I started to do the rehabilitation there, there was a girl that used to come in a couple of times a week, and she was 21 and she had a stroke when she was 19.

Larissa Kogan 17:02
And so I was like, okay, so other people, other people. It affects other people. Yeah, and so. And then slowly, over time, I got to meet some other, other younger people that had strokes. And just before I left, a guy came in that was the same, like, the same age as me, and he had had a stroke, but I was leaving like that same week.

Bill Gasiamis 17:24
So you know, in the early days when you were questioning yourself, were you perhaps in a bit of a denial that you’ve had a stroke? Was any of that happening at all?

Larissa Kogan 17:36
Not, not denial? But no, it was. It’s, it’s such a weird thing to try and explain, because now, like, I’m, I’m completely aware that you know of things like this, but like, I just maybe, maybe, maybe denial, but not denial, yeah, just denial. It must have been. But, um, when I believe maybe as well. And I think I think that, um, yeah, I think disbelief as well.

Bill Gasiamis 18:09
I’m healthy. I go to the gym, you know, everything. I’m 43, how can I have a stroke kind of stuff?

Larissa Kogan 18:17
And like, when I went things, when I got home, that was when I think things started to take a little bit of a downturn for me, um, because I was back home, I was by myself. I wasn’t getting I wasn’t, um, sort of seeing people every day in the hospital or anything like that. And and then I had to start thinking like, what what next? And so I initially, my work agreed to have me back for half a day a week, and but when I when I was at work like there was very little I could do. And I’d actually spoken with a doctor already by then, and he said, I don’t think you should go back to work.

Larissa Kogan 19:01
He goes, honestly, you may never work again. That was the and when I was starting to hear things like that, I was like, Okay, maybe I’m not as okay as what I think I am. But I was also sleeping like a lot, like maybe about up to 20 hours a day fatigue, just, yeah, I just like, like, I’d get up and I’d maybe like, I’d try and go for a walk and like, I go for a walk, it might be just that I’d get down the stairs just sort of and then go back up again, like I was.

Bill Gasiamis 19:36
So was the hardest part, the physical part, or Was it not being able to work and go back to the gym? Like, was it navigating all the time?

Hospital Stay and Initial Congenital Heart Defect and Hemorrhagic Stroke Recovery

Larissa Kogan 19:46
It was all of that I know also, like, I knew I had to at least put a hold on my membership at the gym, and I called the gym, like, called them to tell them I was. Going to have to take a break for a little while, and and then they answered the phone, and because of my aphasia, I guess, I couldn’t speak. I was trying to talk to them to say, you know, I I’ll need to have a little break for I knew exactly what I needed to say. It was that was not the issue. But when I went to say it, I was like, just, I couldn’t get any words out, and that was and so I started to become quite depressed for a while.

Larissa Kogan 20:27
And then it was around that time that NGIs, my NDIS sort of agreement has come. Had had come through. And so from there they said, Okay, we’ll have someone come and see you, and then we can figure out, like, what, what services are actually out there that you want to participate in, and, and so, yeah, so from there, I’m they, they had me talking initially with A psychologist. I also looked at getting some rehab, like physical therapy, and so that they were, like, the two big things, I had an OT come to my house and sort of go through everything with me as well.

Bill Gasiamis 21:13
Daily tasks were okay.

Larissa Kogan 21:16
So I could bet, like, I couldn’t really cook, um, so things like that, I was just everything. Was it was, yeah, just, I think, because I had to do everything, also with my left hand, and that was a whole thing as well. It wasn’t just about not being able to speak as much as I wanted to, but also feeling very depressed, but then I just couldn’t do anything. And so it was like it was all all kind of up in the air. But honestly, through NGIs support, that’s probably been my biggest, my biggest, yeah, my biggest Savior.

Bill Gasiamis 21:57
NDIS is the national disability insurance scheme that we have here in Australia. Somebody becomes unwell or disabled, you can apply to have a certain level of care depending on your severity, your challenges, and then from there, those services can be made available to you, opened up to you at no cost, most of the time, or at a very low cost, right?

Larissa Kogan 22:21
Yes, that’s right. And like and I do understand in some other countries, they don’t necessarily have that support. And even in Australia, I think you have to have, it’s really beneficial to have someone advocate for you when you’re getting when they’re working out what NDIS support to give you. And so I was very lucky for me that my aunt was so so forthright and and really advocated for me so so I feel that the level of support I have from NDIS, maybe some other people haven’t gotten as much, just because they didn’t know that they could get it.

Bill Gasiamis 23:04
Navigating the system is always hard, departments and all that stuff’s impossible, especially when you had a stroke, right?

Larissa Kogan 23:11
Yeah, because I, like, I knew exactly what I needed to say and do. And then when I was actually like, Okay, now speak. And I just, I could barely speak.

Bill Gasiamis 23:22
Is your answer? Your biggest fan? Were there some other people that, oh, I’ve also come to the rescue?

Larissa Kogan 23:28
Definitely. There was a few people. My parents, they didn’t live in Sydney. They came down to Sydney every day and saw me in the hospital. My aunt, she was living very close by to me. So she, she came to the hospital every day. A number of friends as well, some that I probably didn’t think I had, like I used to see all that often. They, they came to the hospital all the time. But then other people that I thought were very close to me, I never heard from them again. And so there’s, and, like, initially I was thinking, oh, you know, like, it’s me, like, what have I done.

Larissa Kogan 24:07
I did some more reading into it. And for some people, they there’s something that’s happened in their life that they don’t, they can’t deal with what’s happened with you. And it’s also yeah and, and also, just for some people, it’s like, it’s almost like they, they miss the person that was there previously, and they, they just can’t deal with whatever.

Bill Gasiamis 24:29
They can’t relate to you. Yeah, yeah. They don’t know how to help you, and they don’t know how to what to say and how to be supportive, and they don’t know how to deal with your injuries, yeah, the way you interact with the world now, yeah, and some of them are just rude and naughty and not nice, but they’re very few and far between. We’ll give them the benefit of the doubt.

Larissa Kogan 24:52
Look, I think there’s a whole range of different things, but for me, I realized more than I think. It any other time in my life, I just needed to count on myself. Yeah. And I couldn’t look at sort of getting reassurance or or from other people. I had to get it all from within.

Bill Gasiamis 25:11
So, but you did get reach out for help. So that’s different. Oh, reassurance is different from I specifically need help, yeah, yeah. It helped to fill out a form have a conversation with the doctor. Remember what the doctor said? Yes, etc.

Larissa Kogan 25:27
But definitely, my aunt was very helpful in that regard. But also just the different provide like service providers that I spoke with, they were fantastic, really fantastic.

Bill Gasiamis 25:42
Said, you did a bit of reading. You seem to have picked up a little bit of information from reading different things. Was there some standout books, things that really helped you in the recovery?

Larissa Kogan 25:52
Like a lot of it was just just looking up on Google, just anything related and like, but specifically around young people having a stroke. And then I made it more specific again, looking in Australia, because I find that people in different countries have different levels of support, or different types of support. So it just made sense to just look at Australia first, because that way I knew that they people would be in a similar situation to my own, yeah, but yeah, for a while I was so depressed, because I just, even just to go out to like.

Challenges in Congenital Heart Defect and Hemorrhagic Stroke Recovery

Larissa Kogan 26:29
If I went and got physical therapy, like, by the time I got there, went through the whole physical therapy, came home, I was so exhausted, and then that was my Day and and and because I didn’t, I wasn’t working very much, or even when I was working barely, like I was just thinking when, when’s this all going to get better?

Larissa Kogan 26:52
By speaking with a psychologist, I they, they then, initially, I had a psychologist provided by, I think my my support coordinator through NDIS, she found a psychologist for me, but then I I realized I can actually go out and get my own psychologist, and it can still be paid for by NDIS. And so that was what I did.

Larissa Kogan 27:15
I got my own psychologist, I got my own house cleaner. I got the type of exercise that I wanted to get, not just what was being provided. And I was also, like, a very avid skier, and so I found this at, um, at the entertainment quarter, there’s a, like, a, it’s not a game, but it’s called off piste, and it’s, and they, they do, like skiing services, so like, you actually, you’re on, you’re, it’s like, you’re actually on skis, like the the end, but it’s a machine. Yeah, so sorry.

Larissa Kogan 27:56
I’d say, I’ll say it better. I think it’s, yeah, it’s a machine, but you’re actually looking at a ski resort, and you’re going down the mountain, but you just, you just, and you’re on these skis, and so it’s very It sort of feels like a ski. It’s a ski simulation.

Bill Gasiamis 28:13
It’s like a virtual ski, similar. And you’re holding on to the things you’re you’re standing in a certain way, you’re moving your body, and you’re helping navigate down the path.

Larissa Kogan 28:24
And like, for the most part, something like that is more used by like, like they it would be more for like, elite scares and that kind of thing, or people that are in ski schools and so they can, they can do their their ski training, even when they’re in Sydney and and so I sort of put myself forward saying I’d really like to do this, and it was approved by the NDIS, and I could. And you look at the first videos of me sort of trying to do that. And it was like, I could, I was, it was so hard for me to move. And I was on a, like, a beginners thing, just trying to, I it was really hard to navigate.

Bill Gasiamis 29:13
So then that was part of your physical rehab.

Larissa Kogan 29:17
And then, and I went every Sunday and and by the end I was on, I was on the the the proper sort of level, not just a beginners, yeah, and it was, I loved it. And I was doing the races and all sorts of things. And it was fantastic.

Bill Gasiamis 29:39
I remember being in physical rehab three times a week after I got home from hospital. And it was the craziest thing trying to get to one hour of rehab would be a a half a day or a full day. Oh, yeah, of effort, and then you’d be wiped out, and then you’d come home, and then, if you’re doing that, three days a week, then there goes your entire week. Because, yeah. What are you squeezing stuff in between? Near impossible, right?

Larissa Kogan 30:05
Like, I’ve got no idea how people in countries where they don’t have this level of support, or maybe for people who can’t afford it in other countries, like, whether it has to be, you have to pay for it yourself. It’s, I don’t know how they get through this, because I think a lot of it, I know, was, like my own resilience and wanting to to get better. But if I was had, like, roadblocks like that ahead of me, like, I don’t know how I’d get over it.

Bill Gasiamis 30:39
Yeah. So, so all of the services and support that you’ve received has been able to help you get to this stage. We’re now seven years later. Yeah, was there any other setbacks in that seven year period between, you know, falling out of the hospital bed was the first one, and then getting stitched up and that did you have any other down moments where things were kind of going okay, and then you had a sort of a setback?

Larissa Kogan 31:09
Definitely. I remember I was, this is when I still lived in my two story apartment. Um, some friends invited me out for like a, like, lunch and and as I was about to walk down my stairs, I slipped and bang my head, wow. And I thought, oh, that’s fine. I can get to disc it up. And I I was went down, I got a cab, and then when I was at the restaurant with my friends, I said I felt like my head might have been bleeding, and my friend looked, and she goes, Oh my god, like she was, I think you’re going to need to go and get this stitched up.

Larissa Kogan 31:47
Like I didn’t realize that it was that bad, so that that was probably a really big one. I fell over quite a lot, and that that, for me, was just really embarrassing. And, yeah, yeah. So, like, because I to help, yeah, like, they’d come home and they say, you okay? And I said, I’m fine. Just leave me alone. I just want to get up and move, you know, yeah, but that, I mean that I even this year, I’ve still fallen over sometimes.

Bill Gasiamis 32:22
And when you fall over, because I still do this in my head, like, sometimes I trip, or my left leg hits the step as I’m going up the stairs, and I fall up the stairs. When you fall, do you always? Because this is what I do. What I do is I go, I go like, Oh my god, like my leg is not working. And sometimes when there’s people around me, they’ll go, oh yeah, my leg does that too. Sometimes I make me feel better.

Navigating Life Post Congenital Heart Defect and Hemorrhagic Stroke

Bill Gasiamis 32:49
And it’s like, oh, I don’t know if it’s, I don’t know if it’s me not paying attention, or if it’s the fatigue that made my leg not go up and fall over. So I’m obviously, I’m always overthinking the incident, rather than, like, just getting up and walking away. I have to go over it in my head.

Larissa Kogan 33:07
No, for me, it’s just, I just want to, like, because I people don’t know you. They’re just, they’re they’re already thinking about something else, like one second after you kept walking. So there’s no, I don’t really see the point in worrying about what other people think. It’s just like, keep going for me. I don’t think it’s so much like fatigue or whatever. It’s just my leg just doesn’t always necessarily move as much as what I want it to like for the these days, um, my rehab, I say rehab. It’s like, I see a personal trainer three times a week, and I was and I have a dog now.

Larissa Kogan 33:52
So, me and my dog go to see the personal trainer together and, like, and we do stuff like running, um, so there’s, like, a lot of running, a lot of weights, and when I, when I was first home after having a stroke. I actually forgot how to run like I knew what it was like if I saw someone running and be like that. You know that that is running, but if you asked me to do that, I, I was like, do I do it like this? Or, how does it work? Like, I couldn’t figure it out. And so I definitely went through a stage where I I just felt really stupid, even though, like, I know I’m not stupid. It’s I felt stupid.

Bill Gasiamis 34:38
You’re hard on yourself. Yeah, very much, even though you’ve had a stroke and you know that your brain’s been damaged and you’ve went through all this stuff.

Larissa Kogan 34:46
Absolutely, because I just wanted to sort of keep going and just get over it. And like, these these days, it’s pretty good, like, I’m working full time. I’m as more acceptance, yeah, but I’m also. So working out, I’m also working for a company that is like so when I started with the company, I didn’t, I didn’t tell anybody about strokes or anything like that. And I was looking on the intranet and and different things came through, like on the feed of the internet. And they have, I realized they had this thing in my company called collectives.

Larissa Kogan 35:26
And so they had, like the LGBTI collective, different collectives, and they also had one called the disability collective. And so I sort of looked at it, and I was like, Oh my God. Like people with different disabilities are part of this collective and and most of the people, I think, had more, like, ADHD kind, kind of things, like neurodiverse, but I thought, you know, stuff this, I’m going to do it, and I’m going to I’m I’m real, and I, and I’m so glad I did, like, after I joined this collective, they did a little piece on ,e, and they just said, oh, you know, this was her situation and but this is where she is now.

Larissa Kogan 36:06
And people who I’ve never met, whatever they they, everyone was just saying, Oh, my God, this is so amazing, and so and I realized that this could actually be a positive thing.

Bill Gasiamis 36:19
Yeah, to realize it.

Larissa Kogan 36:23
For six years.

Bill Gasiamis 36:24
Yeah, that’s fair enough ages for some people to get to that stage and to reach out to other people, to compare notes, to ask questions to, you know, find out where they’re at. And I remember being in a similar situation, you know, but I couldn’t find people that were like that, and I worked for myself, so there was no support services or groups at work or anywhere or anywhere else. So that’s why the podcast exists, because, yeah, needed to create something so that I could have more connection with people who have been through what I’ve been through.

Bill Gasiamis 36:58
My wife doesn’t get it. I don’t want her to really get it. There’s only one way for her to get it, and we don’t want to go down that path. Yeah, yeah. So and this internet was kind of, it seems like it’s changed what you thought about, what other people think about people who have had a stroke, as in.

Larissa Kogan 37:16
Yes, well, it’s also, it’s more about me helping other people realize that there’s more to it. So I and that’s one of the reasons, like with the Stroke Foundation, I was doing a little bit of fundraising, but I I see this as a real chance for me to maybe speak up and and and hopefully get the ball rolling for other people as well, even with work after, after I had had that story posted about me at work, a guy from our Melbourne office, he contacted me just over email, and he said, I’m so glad that you’ve done this. He goes like, I’m not part of the stroke of the disability collective at your at work.

Larissa Kogan 38:03
But he goes, I had a stroke when I was 19, and nobody here knows, and I and I, and I said to him, I said, if you, if you are willing to do it like I think you, I think you should come forward and say something, because it’s if any like my particular company that I work with, they’re so accommodating of things like that.

Bill Gasiamis 38:25
So yeah. I mean, if they’re a big organization, and they’ve got 1000s of people, one in four people, potentially within their organization, may experience a stroke in their lifetime. So absolutely, they’ll have stroke survivors already working there, plus they will have people who haven’t had a stroke while working there? Who will have a stroke?

Bill Gasiamis 38:42
Yeah, absolutely, it’s important for corporations or big organizations to get behind people in every version of health or ill health, right? Because, yeah, people have had heart attacks and cancer and whatever, and it’s just you have to find a way to support your staff, because everyone gets something, and if you don’t well then.

Larissa Kogan 39:03
There was two companies I worked with prior to where I am now, and I didn’t say anything to anybody there about having had a stroke. And I felt like, probably, I felt like it would not work in my favor, to be, to be completely honest. So it was very, it was very lucky. I suppose, in some ways, it was COVID at the time, so, you know, mostly working from home anyway. So the people, I suppose, didn’t really get to know me, but it was, I just felt it was just easier to not say anything and leave it at that.

Bill Gasiamis 39:45
Sometimes it is as well. So yeah, it’s not compulsory to blue to everybody, like I am, like, not everyone needs to know. Some people don’t need to hear about it, and some people it’s not appropriate to tell them.

Larissa Kogan 39:57
So, yeah, absolutely. But I. Think it was it for me, when I was working in these other companies, I literally didn’t think. I didn’t feel that if I was to say anything to somebody, it would, I would not necessarily work in my favor.

Bill Gasiamis 40:14
So yeah, yeah, that’s true. In some organizations, it’s sad but true. They discriminate against people who have had neurological challenges for whatever reason.

Larissa Kogan 40:24
Yeah, yeah, absolutely. So I’m, I am, but that like where I am now. I’m still, like, I train every day. I’ll train three times a day, three times a week, but I like, I’m always out doing something i I’ll never do, probably CrossFit again. Maybe down the track.

Bill Gasiamis 40:44
Where would you put your fitness on a number? If you were at 10 before the stroke, if your fitness was through the roof, where would you be now on the scale of one to 10.

Ongoing Congenital Heart Defect and Hemorrhagic Stroke Recovery and Support

Larissa Kogan 40:54
I’d say probably a six.

Bill Gasiamis 40:58
I’m not talking about physically capable. I’m talking about, like, fitness, would you still be quite fit and have good cardio?

Larissa Kogan 41:04
Cardio? I don’t think so. Like, even when it comes to things like running now, like short distances, like I can run, but I couldn’t just, you know.

Bill Gasiamis 41:16
Did you do before?

Larissa Kogan 41:19
I was never a marathon runner or anything like that, but like, I could sort of keep going, and now it’s like, but at the end of my training session with my PT, I That’s it. I like, I’m pretty much done.

Bill Gasiamis 41:35
Fair enough. Well, looking back now, How has life changed? Obviously, physically, it’s changed, but also emotionally and mentally, like, where you’re at in that space.

Larissa Kogan 41:45
In some ways, like, it’s actually better I’m, I’m, I’ve, I’ve got so much, like self determination, much more than I realized I ever had before. But I’m also very self confident, and I think in the past, I probably wasn’t, and I had some difficulties, like public speaking and that kind of thing, whereas now I’m like, hold me back. I just I really, like, I want to get out there and talk and and I’m very happy for the focus to be on me and to deal with that.

Bill Gasiamis 42:21
So even though you had, like, I would imagine an athlete’s body back then and now, you’re a little bit shaky on your legs and you fall over and all that, you have more self confidence than you did back then. Absolutely, that’s so strange, but interesting as well, right?

Larissa Kogan 42:39
Yeah, very like I and when I look at like when, when I hear about the different, like people that are younger, that have strokes, like some people feel pain, or they feel cold differently, or things sound different, or whatever. For me, there was never anything like that. But it was just, I was just really unstable, and I could fall over really quickly, and it was, yeah, and so that, that for me, was, like, a real, like, the biggest thing, I think that I just, I didn’t feel like I could always, I was always stable.

Bill Gasiamis 43:17
So you have, you’ve discovered strengths you didn’t know you had before.

Larissa Kogan 43:21
Definitely, definitely, and so like nowadays, I’m, I am, like, I feel really confident about the future, really looking forward to everything that happens next.

Bill Gasiamis 43:35
I love it, yeah, I’m supportive of it. I encourage it. Yeah, I’m just it’s, it’s so strange like before, when you reflect back on your life before, clearly you’re aware now that you had no self confidence, and yes, you had so much more ability, we’ll call it, yeah, yeah, and not that you’re less able now, because seems like you’re still able to do everything you want to do in your own way, different way, like, Do you know where that stemmed from? That lack of confidence? Was it? I don’t know.

Larissa Kogan 44:09
I used to get a lot of anxiety and depression in the past, things like that, and I just figured that was just part of everybody’s daily life, because we’re so busy and we’ve always got so much on but like, I’m doing more now, in some ways, than I was before. I’m also studying and as well as working. So I’m like, I’m doing lots of things, and I just, I just, I’m really, I’m just excited about whatever comes next.

Bill Gasiamis 44:36
I love it. What are you studying? My MBA, far out, that’s a bit of effort.

Larissa Kogan 44:43
Yeah, but it’s all good.

Bill Gasiamis 44:46
Yeah, good on you. Well done. I love it. I know it would also be training your mind to get better, to heal, to create, you know, different neural pathways, etc.

Larissa Kogan 44:58
Absolutely. That Neuroplasticity at the beginning, like I hadn’t, I don’t think I’d even really heard of the word before. And the first kind of doctors that started explaining that to me, they said, like the the biggest part of Neuroplasticity is is going to happen, like in that first year, and then after that, you’ll still see different changes and improvements, but lot slower, but, and it was so true, like I noticed every time my aunt called.

Larissa Kogan 45:29
Every day I had a new thing to tell her, a new, new thing that I had relearnt, that I couldn’t do before, or my finger moved more than what it used to, or something was every day there was something really big happening for me.

Bill Gasiamis 45:44
So you see the stroke as something that’s kind of shaped you in a really meaningful way.

Larissa Kogan 45:49
Yes, 100% Yeah, that’s so good

Bill Gasiamis 45:56
To get there, right? 67 years, but you’re there, and that’s a big, a massive lesson, by the sound of it.

Larissa Kogan 46:02
Yeah, it was. And I think as well, maybe the person I was prior to the stroke was not, I wasn’t as nice.

Bill Gasiamis 46:12
To yourself and others both.

Larissa Kogan 46:14
That yeah, like, so it was in some ways.

Bill Gasiamis 46:21
It’s, you had it in you to be nice, but perhaps you had a different way of thinking about what, whether or not it was necessary to be nice.

Larissa Kogan 46:29
Yeah, yeah. So I’m Yeah. So I think nowadays it’s just, it’s everything’s a lot. It’s very positive.

Bill Gasiamis 46:37
Yeah, were you a little bit hard asked and gung ho, and just get on with it, get the job done and not empathetic? Yeah, yeah. I think many people are like that. I’ve been like that. I mean, I was Go, go, go. I didn’t really pay attention to people’s problems. Or, yeah, especially at work, because I can, you know what, we’re at work, leave your problems at home. Don’t bring them here. I don’t want to know about it. Yeah, a lot of that.

Reflections on Life Before and After the Stroke

Bill Gasiamis 46:58
Whereas now we tend not to take our problems to work, but we have got permission to go having a shit day, or something bad happened at home or this person. And whether you tell somebody to bring their personal life to work or not, they’re going to bring it anyway. Yeah, of course. And you might as well kind of give somebody three seconds of your time and just kind of give them a sense of, I don’t know, a helpful ear, some understanding a conversation, just to bring them down from that level of stress or anxiety or whatever it is, right?

Bill Gasiamis 47:32
And then, even though they’re not 100% on the job, like we always want our employees to be, apparently, at least they’re better than they were when they arrived to work, and then they can get to work and at least feel productive and have a have some relief for eight hours or whatever, rather than making their life impossible as well while they’re at work. Yeah, there’s just no need for it. But I get it now, but I also didn’t get it before.

Larissa Kogan 48:03
Definitely, yeah, I just, I think the person I was previously, I just didn’t, I felt like I just didn’t have time for other people’s shit. I just, it was, it was, it was all about me, yeah, and it doesn’t need to be like that.

Bill Gasiamis 48:19
Yeah, it’s time for everybody. Isn’t there, especially if the people are looking up to you. You know, that’s what I love about it. Stroke Survivors tend to want to help out other stroke survivors. Heaps, right? And and even in our kind of worst times, when you’re got the least energy, the least finances, you’re the most banged up, your brain’s not working properly, your leg and your arm is not working properly, even then, we somehow seem to find time for other people, which is such a blessing, isn’t it such a gift? 100%

Larissa Kogan 48:55
Yeah, like it’s exactly right.

Bill Gasiamis 48:57
And before too busy, I’m too busy. I haven’t got the time or, yeah, I’m busy.

Larissa Kogan 49:03
Also, like, very busy, but not happy. I just stressed and unhappy, but that always so busy.

Bill Gasiamis 49:12
And now, more happy.

Larissa Kogan 49:16
Yeah, very happy. It’s so weird.

Bill Gasiamis 49:20
So weird, and it’s lovely that you get there, right? And we can actually share this message with other people, listening, especially stroke survivors, who might, who might even be in hospital, right? So it’s the toughest time. It’s terrible. There’s a lot of hard battles to overcome, there’s obstacles, there’s all sorts of challenges, and then after that, there’s this other stage that you can get to that so many people get to, right?

Bill Gasiamis 49:47
And it’s this time here where we’re talking about it, and we’re on a podcast, and we’re about giving, giving hope and inspiration and and just sending a positive vibe. You know, to the rest of the stroke community out there.

Larissa Kogan 50:02
Yeah, absolutely like that. That’s, I guess, for me, one of the reasons I really want to be an advocate for other people going forward as well. Because there’s so many different types of strokes and stroke survivors, like, what, what is like, kind of good for me, it maybe is unacceptable for somebody else. Or maybe what I’m maybe I’m more I’m, I’m, yeah, so maybe what I can do is maybe more than what someone else can do. But it doesn’t, it doesn’t mean we can’t all sort of strive together.

Bill Gasiamis 50:42
We can join. We can go to that event, you know, like your previous events, together. And we can all be different and have different levels of skills and try and reach our personal best.

Larissa Kogan 50:53
And but I, like, I’d love to be able to work with people as well, so to sort of help them realize that what like the best that they can be is still the best.

Bill Gasiamis 51:08
So yeah, with all of the stuff you’ve been through, your new kind of understanding about yourself, your personal belief in yourself has shifted your counseling with all of those positive things that have happened together, is your anxiety at a different stage now has?

Larissa Kogan 51:23
There isn’t any. There’s none. Like, even with things like, like, I could die tomorrow. So I could hopefully.

Bill Gasiamis 51:36
But we all could, absolutely.

Larissa Kogan 51:38
Yeah, whereas, like, if you told me something like that back in the day, like, I, oh, my God, I could, Oh, that’s terrible. And like, yeah. And I see people even, like, I like, friends of mine even, they’re like, You shouldn’t joke about things like that. I was like, if you don’t joke about them, like, what’s the point?

Bill Gasiamis 51:58
We’re almost there once, right?

Larissa Kogan 52:01
So, yeah. And so it’s just, it’s not scary.

Bill Gasiamis 52:05
I hear, I share that sentiment, right? I I know that a lot. I speak about it a fair bit, and I try to, I try to not freak people out about it, but I’m very comfortable in saying, Well, I want to be here tomorrow. Guys, like, don’t worry about it.

Larissa Kogan 52:21
Yeah, absolutely, yeah, absolutely. But, um, yeah. I think it’s powerful, yeah. But I think anybody who has maybe had that, like near death, kind of like, you feel like that, because what can’t be It can’t be as bad as that again, yeah.

Bill Gasiamis 52:39
I think what makes it worse is, if you have an experience like that, that’s bad enough, but then if you’ve got a an anxious mind about it as well, yeah, that’s can make like a terrible situation even more worse, right? There’s this saying that I like to to tell people around me when we we there’s a certain person you come across who has an injury, and they’re expecting death from from a scratch, then they’ve twisted their ankle, and they’re expecting death from twisting their ankle, and then they, you know, they had an eye infection, and they’re expecting death and all that.

Bill Gasiamis 53:18
And it’s like, some people die 1000 deaths? Yeah, some people die once, yeah, man, I would not want to be the person who’s dying 1000 deaths my entire life. I’d rather be the person that just goes there once, and it’s done and dusted, even if it’s a long, drawn out, you know, tough battle with whatever, whatever, like, yeah, just once. I’m not doing this whole forever. Oh my gosh. I had a brain scan yesterday, another one, because it’s been since 2016 since I had my last one. So I’ve had one before that as well, after that as well.

Advice for Stroke Survivors

Bill Gasiamis 53:59
And I’ve been getting massive headaches lately, and I don’t know why, and they’re just the most crazy headaches. I’ve never had such bad headaches in my entire life, and of course, with my history, yeah, there might just be migraines, but why?

Larissa Kogan 54:16
Like, why risk it? What kind of stroke did you have?

Bill Gasiamis 54:18
I had a hemorrhagic stroke as well. I had a blood vessel as well that I was born with that bled. And the the same thing, I had three bleeds before I ended up having brain surgery to remove the faulty blood vessel. Yeah. And then I’ve been through learning how to walk again and using my left side again, and all that type of stuff as well, and then these headaches, now that they just come out of nowhere, I’m not thinking, Oh, my God, could this be what I’m doing is going let me find out if it is, so we can get onto it. It’s a very different exploration session.

Bill Gasiamis 54:56
I’m not doing it because I’m stressing about it. I’m doing it to be active about. Proactive about it, yeah, yeah. And I’m waiting for the results. But I’m not thinking about, Oh my God, what are the results going to be on Thursday? Yeah, whatever they are, they are. I don’t, yeah, I have no control in that. All I know. What I have control in is not burying my head in the sand and making a decision to say I’m going to go and get checked out and yeah, deal with whatever comes. What else can I do? Absolutely, yeah, I don’t think it’s going to be my last podcast episode. It might. I don’t know.

Larissa Kogan 55:32
Who knows.

Bill Gasiamis 55:36
So look, I really appreciate you reaching out and sharing your story. I love your journey, and I look forward to kind of hearing how it’s going in three and four years from now, that’ll be an amazing thing to follow and witness. And I just wanted to ask you, if you if there are people listening now, what would you say to them, people who had just started their stroke journey, or even the ones that are not moved along, perhaps as much as you have, even though they’ve been on their journey for a little while? Like, what do you want to share with them?

Larissa Kogan 56:12
Don’t give up, like you have to look on the bright side. And, yeah. Yeah. I mean, if you don’t feel that you’ve got the maybe the will to do that at the moment, to start off with, do something like see a doctor, maybe go on medication, something like that. But always look forward it like, know that you can, you can be better than what you currently are.

Bill Gasiamis 56:44
I feel like what you’re saying is people should look for solutions to their problems rather than focus on their problems.

Larissa Kogan 56:49
Yeah, absolutely. And like, I mean, the thing is, when I first had my stroke, I was like, once I was home, I was definitely feeling very down. Didn’t really know how I knew what I wanted to do, but I just didn’t feel like I could physically do it. And yeah, you just, that’s just what you have to do. You have to just keep going. And it does. It does improve.

Bill Gasiamis 57:16
I love it. Larissa, thank you so much for joining me on the point. Thank you. Thank you. I really enjoyed it. What happens when everything you’ve built, your work, your health, your identity, Disappears Overnight. That’s the story we heard today. But more than that, it’s a story about what you find when everything else falls away. Larissa didn’t bounce back right away. She fell she got stitched up, felt hopeless, and then started to rebuild not just her movement, but her confidence, her purpose, her voice. What stood out to you from today’s episode? Share it in the comments.

Bill Gasiamis 57:50
Your insights may be exactly what another stroke survivor needs to hear if you want more support on your own path to recovery. My book, The Unexpected Way That A Stroke Became The Best Thing That Happened. Is available at recoveryafterstroke.com/book, you can also hit the super thanks button on YouTube. Join Patreon, and if this episode hit home, please share it. You never know who needs to hear it today. One conversation can be a turning point, and remember, you don’t need to have all the answers. Just keep moving forward, see you in the next episode.

Outro 58:23
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Outro 58:53
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Outro 59:18
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly.

Outro 59:44
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own. Own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there you.

The post Collapsed at Home: The Hidden Heart Defect That Nearly Killed Me appeared first on Recovery After Stroke.

Overcoming Vertebral Artery Occlusion: Joel’s Story of Strength and Recovery

When Joel Case suffered a vertebral artery occlusion, everything changed in an instant. A man who once skied marathons and ran daily suddenly found himself unable to walk, his balance gone, and his life turned upside down. What followed was a journey marked by resilience, adaptation, and hope, a journey that offers insight to anyone facing similar challenges.

What Is Vertebral Artery Occlusion?

A vertebral artery occlusion occurs when blood flow through one of the arteries that supply the brainstem and cerebellum is blocked. In Joel’s case, the occlusion was initially suspected to be from a dissection, but further investigation revealed it was caused by vertebral artery stenosis, a narrowing of the artery due to plaque buildup.

This condition can lead to life-threatening complications, including strokes that affect balance, coordination, and even basic mobility. Understanding the causes of vertebral artery occlusion and stenosis, and knowing when to seek treatment is critical.

Joel’s Diagnosis and Recovery

Joel’s left vertebral artery became completely blocked, and he lost about 25% of his cerebellum function. His stroke left him unable to walk without assistance. His medical team considered various approaches, including left vertebral artery occlusion treatment and ongoing monitoring to prevent further clots.

Further testing, including a vertebral artery occlusion test and annual MRIs, confirmed that his occlusion was due to arteriosclerosis rather than a dissection. His team also looked at vertebral artery stenosis causes to better manage his risk and protect his remaining arteries.

Treatment and Life After Stroke

Joel’s doctors initially suspected the need for interventions based on vertebral artery stenosis guidelines, but he responded well to medical management. He was prescribed high-dose statins to stabilize his plaque, baby aspirin, and lifestyle modifications to reduce future risk.

In terms of left vertebral artery stenosis treatment, his care focused on keeping his cholesterol levels in check and closely monitoring his heart health, as the same condition that blocked his artery could affect his heart.

For many survivors, questions about vertebral artery stenosis life expectancy naturally arise. Joel’s story reminds us that while the condition is serious, proactive care, regular follow-ups, and healthy habits can dramatically improve quality of life and longevity.

Invisible Struggles and Inner Strength

Beyond the medical facts and tests, Joel’s journey shines a light on the emotional weight of recovery. The fatigue, fear of another stroke, and feeling unseen by colleagues and friends were some of the hardest parts. Yet, Joel chose to keep moving, reconnect with family, and even volunteer with cancer and stroke support groups, turning pain into purpose.

What You Can Learn From Joel’s Experience

• Ask questions: Joel’s persistence in seeking answers led to accurate diagnosis and better care.
• Keep moving: Staying active was key to rebuilding his strength and balance.
• Find your support system: Whether it’s family, a coach, or a community, connection matters.
  

Final Thoughts

Joel’s story is a powerful reminder that life after a vertebral artery occlusion is challenging, but recovery and renewed purpose are possible. If you or a loved one are facing right vertebral artery occlusion treatment, vertebral artery stenosis guidelines, or wondering about your life expectancy with vertebral artery stenosis, know that you’re not alone.

Overcoming Vertebral Artery Occlusion: A Stroke Survivor’s Journey of Strength and Renewal

Vertebral artery occlusion survivor Joel shares how recovery reshaped his life, inspired empathy, and renewed his purpose.

Support The Recovery After Stroke Podcast on Patreon

Highlights:

00:00 Joel Case’s Background and Initial Health Challenges
09:26 Prostate Cancer Diagnosis and Surgery
19:14 Vertebral Artery Occlusion Diagnosis and Initial Recovery
29:03 Challenges of Returning to Work and Emotional Struggles
38:08 Moose Attack and Its Impact
48:03 Volunteer Work and Personal Growth
57:45 Reflections on Life and Future Plans

Transcript:

Joel Case’s Background and Initial Vertebral Artery Occlusion Challenges

Bill Gasiamis 0:00
Hello everyone. Before we begin, I want to say thank you to everyone who’s left a comment, written a review, supported the show on Patreon, click the YouTube super thanks button, bought a copy of my book, or even just chose not to skip the ads. You’re helping more than you know you’re helping this podcast reach someone who, like Joel, once did feel overwhelmed facing the challenges they never saw coming. You’re helping them feel seen, and you’re keeping this work going. Today’s conversation is one of those that stays with you.

Bill Gasiamis 0:35
Joel case was 65 when, out of nowhere, a vertebral artery occlusion caused a cerebellar stroke, a man who ran marathons and skied 50k races suddenly couldn’t stand or walk, and if that wasn’t enough, cancer a moose attack and the emotional toll of recovery followed. But Joel’s story isn’t about what happened to him. It’s about what he chose to do next. If you’ve ever felt like recovery keeps throwing curve balls or wondered how to keep moving when it all feels like it’s too much, this one is for you. Let’s dive in. Joel case, welcome to the podcast.

Joel Case 1:19
Welcome Bill. Thank you for having me and tell my story, I guess, and listen to your podcasts, not religiously, but once, about a year and a half ago, I was looking at things on the internet for stroke recovery since I suffered my stroke back in January 2022, and it was quite a life changing event. Give you some background names. Joel case, 68 years old. Now live in Idaho, Falls, Idaho and the states always career and basically radioactive waste cleanup. I started out with the University of Florida, met my wife in Gainesville, Florida, and we kind of came out here on the lark.

Joel Case 2:10
Didn’t know where Idaho was, but Job Interview Westinghouse started with and from came out. We thought we’d stay here in Idaho. Was quite a culture shock. Moving from Florida with winter and fairly conservative place of the world, and Mormon country, as we call it so, very heavily north of Salt Lake. And neither, good or bad. It’s just a interesting shock culture change from Gainesville, but we’ve lived in Idaho 44 years. I’ve worked both in the commercial sector for nuclear industry, and then I ended my career with Department of Energy and nuclear weapons cleanup.

Joel Case 2:46
A lot of people think Department of Energy deals with energy, and that can’t be furthest from the truth. We we manage the nuclear waste and nuclear weapons stockpile for the military. That’s a major function. That’s what people don’t realize. So Idaho has a big Department of Energy site. So, but start my journey. I’ve been fairly active. I used to travel a lot. I worked at International Atomic Energy Agency. Fairly active, athletically, ran marathons, etc, bike racing, mountain biking, skiing.

Bill Gasiamis 3:17
So, you know, even even up to the age of 65.

Joel Case 3:23
Yeah, I was doing not marathons. I did ski marathons. I did 50k marathons. About three or four a year I would go up to Anchorage, Alaska. They had tour of Anchorage, so, wow. Wasn’t fast, but it was.

Bill Gasiamis 3:35
How long? How long did it take? How long did it take to complete.

Joel Case 3:39
My fastest time was about two hours and 55 minutes. So that’s 31 months. Yeah, so, so, like I said, it was fairly athletic camp, ski ran and bike just and, you know, fairly healthy. I never had surgery. You know, my first surgery was only surgery was that tonsillectomy when I was, like, six years old. So, you know, it kind of had a, did have cases of skin cancer. Now, you’re from Australia, so you guys are probably familiar with, I was raised in Florida, and, you know, years as a kid through, you know, we go and get our first tan and burn.

Joel Case 4:16
So, you know, I’ve had, probably, you know, that was the only really health condition was I get either squamous or basal cell. Did have a melanoma, but I was pretty religious going in so up until the time my stroke, you know, I don’t say life was good, but you know, barely no concerns. I you know, biggest health scare came in in June of 2021, when, you know, I saw your podcast, you reached out that people would have cancer, sexual stroke. Well, I had the high PSA on my prostate, you know, from my prostate so, you know, as you men get older.

Joel Case 4:56
Always help check your PSA level on your blood. And that’s that antigen for. Prostate Cancer. So went through all the tests, and it was high PSA, went and did a MRI, and looked like there might be something down in my prostate. So one of the things to talk about is learning the medical journey and dealing with the medical community in a fairly count of 50,000 Yeah, I know you guys have more of a universal health care, but on the states, it’s not quite that. So that was quite a lessons learned for me, all the events that happened to me, starting with the prostate cancer.

Joel Case 5:34
So, you know, I had the biopsy and turned out it was prostate cancer, and gave me some options. And so this was in the middle of COVID too. So that was always a challenge. So got diagnosed prostate cancer went down the University of Utah, which is they have a good cancer center there, and was scheduled to have surgery to remove my prostate let’s just get rid of it. And then they called a week for my surgery was scheduled. That basically said, Well, it’s COVID. This is considered non essential surgery.

Joel Case 6:10
So they said, We can’t tell you. We can have it scheduled. So I was fortunate enough, I kind of was looking around, well, talk to University of Washington. They also have a good cancer, and that’s in Seattle. So long story short, they could get me in within two weeks. Ended up having the surgery there, and during COVID, flew up from Idaho Falls, it’s about 500 miles away. So had my prostate removed and got scared to death.

Joel Case 6:36
Never had, you know, I had serious since I was six years and it was robotic, fascinating technology. I’m an engineer, so just, it’s robotic, where they go through your front, pump you up, and then they go, he’s behind the couch console and using the robotic arms to basically room your prostate. So I got through that.

Bill Gasiamis 6:56
The same is in the same room, at least the surgeon, or then a different.

Joel Case 7:00
Yeah, yeah. It’s funny, because, you know, my wife couldn’t come back with me because it’s COVID. Everybody’s mask up. So the anesthesia all, he comes in, and they pump you full of happy juice, you know, they get you kind of relax. And she tells you, you know, you could die. You know, they always tell the anesthesiologist and all those wonderful things. Now, you know, side effects. But so they wheel me in. It’s like the Star Trek control room, because this is a teaching hospital, you know, and the doctor, he’d done five or 6000 of these.

Joel Case 7:30
I mean, really good surgeon, but you have residents. So it’s like 20 people in this room with all the equipment. Like I said, it looked like a star room, Star Wars chamber, and he’s behind a council next to you on the operating table. So he’s looking at a console. And they got people around. And the interesting thing I had not known is, you know, I asked, well, your prostate is back there, and you go through the front. So how do you get through all that stuff down there? And he said, they said, Well, we put six holes there, pump you full of CO two.

Joel Case 8:03
And then they tilt your down to 45 degrees to slide all that out. And it’s kind of relevant, because I had my stroke a month later, and I wonder if that caused that. We can talk about that. So, long story short, woke up four and a half hours later. I’m cancer free. So you know, I still get my blood work checked every three months. That’s always kind of a scary time, you know, is it coming back? But so far, it’s been three years removed, three and a half.

Joel Case 8:30
So that’s good, but so we flew home after about a week, and so about a month later, I was supposed to have cataract surgery. Now it’s hell to get old, you know, I had to get cat.

Joel Case 8:42
I’m 65 when this all happened. So, you know, I scheduled a cat surgery. It was late January. So had the, you know, couldn’t drink anything. So I went to bed, woke up to go to the bathroom. About four in the morning, felt fine, and went back to sleep, get and then I woke up. The room is spinning. I’m throwing up, etc, and so I didn’t know what I had. Thought I had COVID, but, you know, this went on all morning. The spinning stopped, but I couldn’t walk. I was throwing up about every hour. And finally, went in, my wife took me into we have walk in clinics here.

Prostate Cancer Diagnosis and Surgery

Joel Case 9:23
I don’t know if they have those in Australia, but, you know, not the emergency room. So they have either what they call physicians assistants or doctors. So there they said, Oh, you’ve got vertigo, inner ear infection. It’s like, okay. So I went home, but you know, I couldn’t get out of bed. I next morning, I, you know, wasn’t bombing, couldn’t keep anything down. But next morning, told my wife, I I got a brain tumor or something. So we she took me to the emergency room where, you know, they did an MRI, etc. And doctor came in and said, you have.

Joel Case 9:59
Stroke. It’s like, Oh, really. And so I had a cerebellum stroke on my left side, and so I was hospitalized, and that evening, he came up, and, you know, I never had any problems with my heart or anything. So it’s like kind of a shock for everybody, because I’m a I’m five nine, about 150 pounds, and like I said, I was active every day. I ran or bike, you know, I’d run six miles or so going to that where I couldn’t walk.

Joel Case 10:35
And so he came up that evening, he said, Well, it looks like I know why you have a stroke, you had a left vertebral artery, tear, dissection, nope, but it just didn’t make sense. So okay, and he said, you know it, but the good news is, and through a clot and it, you know, damage, he said you lost about 25% your cerebellum. So that was kind of shocking to me.

Bill Gasiamis 11:02
Wow, we’re about 10 minutes in by now. You’ve heard Joel share how life changed overnight, one day skiing marathons and the next unable to walk, and how recovery, even when you’re strong and fit, can knock the wind out of you. If his story reminds you of your own. Please know you’re not alone. The Invisible struggles, the quiet fears at night, the exhaustion that no one else sees. They’re real and they’re hard. If this part of Joel’s journey hits home, leave a comment on YouTube.

Bill Gasiamis 11:35
What’s been the hardest part of recovery for you that others don’t understand? And a big thanks to everyone that keeps this work alive. Your super thanks on YouTube, your support of the book and my amazing Patreon supporters. Alright, let’s get back to Joel as he opens up about what helped him push forward and the surprising moments of connection he found along the way.

Joel Case 11:59
Yeah, and you know that the only effect is I had no balance, or I couldn’t walk, because, you know, now I don’t know what you experienced with yours, but so this was a clot that went blocked up in my cerebellum. So he said, you know, the good news is it’s completely occluded. So I go, Well, that sounds horrible, but he said, No, you you keep throwing clots if you didn’t.

Bill Gasiamis 12:24
So the blood vessel that had had the dissection is occluded. It’s blocked, completely, totally blocked, which means that even though there’s blood flow not going through there, it cannot throw more clots, which right, correct the benefit of it being occluded, and you have another two vertebral arteries and another carotid artery, so there is plenty of blood flow to the brain. And that’s engineering for you.

Joel Case 12:54
It is. And I actually have and we can talk, because some of the lessons learned that pass on the folks is keep asking questions, keep moving. But because it turns out it wasn’t a vertebral artery dissection, it was arteriosclerosis, but we didn’t know that. But, you know, the results are the same thing. So I was there about two weeks. They put me on, you know, I must have seen, you know, I had to touch my nose a million times. And they had nutritious come up and say, can eat. But for fortunate for me, I, you know, had some distorted vision, but that’s fine now.

Joel Case 13:31
But, you know, luckily for me, I could eat swallow. And so they got me in to, you know, put me down and monitor me for over the weekend, this was a Friday, and I tell you, it’s a lonely feeling being in the hospital, and as you probably know, and thinking, Gosh, my life has ended. I couldn’t walk. You know, you had the ring to go to the bathroom. They’d have to help you so, but long story short.

Joel Case 13:59
So they started after about stabilized five days into physical rehab at the hospital there for two weeks, so where I gradually do exercises twice a day, and then they sent me. I just wanted to go home. So that journey. There’s the dog. Sorry, that’s okay. So, you know, it was very shocked to me coming, you know, it made me forget about my prostate cancer.

Bill Gasiamis 14:31
So the occlusion wasn’t, then it was discovered the occlusion wasn’t part of the vertebral artery dissection. It was sclerosis.

Joel Case 14:43
It was due to stenosis. Sclerosis, okay, and you know, here’s the thing, you know, because Idaho Falls very limited neurology. Luckily, the doctor at the hospital was a neurologist, but she. Didn’t specialize in, really heart issues or But long story short, so I’m an engineer in questioning, questioning, questioning. So mainly, I was not happy, you know, sent home. I did, can’t say enough about the physical therapist learning to walk again. I started out with, you know, with hiking poles, etcetera, and, and I can’t say enough, the dogs and my wife and the kids they, they were very supportive.

Joel Case 15:31
But the two of dogs I have just walking them every day got back to where I could start jogging after about I look like lurch now, but I am back being physically active. But you know, that’s one of the lessons. You got to keep moving, or else you’ll just, you know, I think that’s the biggest thing, being fit to get me through all of this. Because, yeah, at the same time, I didn’t, you know, there was a US senator had the same type of stroke I had, and while I was in the hospital. They was Senator from New Mexico, same symptoms, etc, but they had to do a brain decompression.

Joel Case 16:07
I asked the neurologist in the hospital, what’s that? Well, that’s when your head’s your brain swells from the stroke, and they decompress, they draw a hole to relieve the pressure. So luckily, I didn’t have that. I did have terrible headaches, but so rehab went fine, but, you know, I asked because at the point in time, it’s like, well, I had a dissection. That’s we didn’t know it was stenosis. I went and got a second opinion, and this will get to that about six months later. But I asked the surgeon.

Joel Case 16:39
I said, well, because they asked me in the hospital, do you go to a chiropractor? No, you go to a hairdresser. They do neck, you know, move your neck because I guess there’s a high instance of dissections with neck manipulation. And I wondered, because when I had my surgery for the cancer, they strap your head down and you’re inverted, and they have to keep you still during the surgery.

Joel Case 17:03
And I wondered if that could cause something, but they said no. But you know, I as a follow up, I just wanted I started to see a neurologist. I go down once a year. I went to see her, and they did an MRI, and they concluded between some of my cholesterol levels, etcetera, that it was due to stenosis and arteriosclerosis disease.

Bill Gasiamis 17:28
So that is probably fair the now, of course, I don’t I’m not a doctor, so I don’t know any of this stuff, but I know that with stenosis and and and the thickening of the inside of the artery wall, that, in itself, can be enough to change the blood flow and, yes, the highs and low pressures of that part of the blood of the vessel, and therefore create a clot, and then throw a clot off. Yes, it can.

Joel Case 17:54
And that’s kind of where we’re at. So, you know, I go down and so I’m three years out, but you know that year was tough. I learned how to walk and run again, and then, as I mentioned you and I sent the email about this is that October. So I had my stroke in January. Recovery took about five to six months and and this time, I was working full time too, and that’s where you learn. I don’t know what you did is for your career, but, you know, I worked for Department of Energy, and again, as more of a master of job field work.

Joel Case 18:34
I learned a lot about people that have strokes, especially if they don’t see any outward signs when you go back to work because I had brain fatigue and needed rest take a nap. And so it was interesting that in my career and dealing with people at work, they just didn’t seem to understand the effects was having the brain fog and things like that. And, yeah, that was kind of disappointing. You could just see you learn who your friends are. You know, I guess situations like that.

Vertebral Artery Occlusion Diagnosis and Initial Recovery

Bill Gasiamis 19:05
Interesting. So comment that one, you learn who your friends are. I’m not sure what happens, but people, some freak out, and some can not understand, and then still be sympathetic or empathetic. And I suppose the the ones that kind of disconnect. Are the ones that don’t know how to be empathetic.

Joel Case 19:25
Yeah, and again, I think you’re right, because there are certain people at work that were just so kind and understood, but they had gone through things too, I think, you know, and but yeah, it was just, I just remember it, just especially people that always talked about caring, and I guess, you know, in the country, you know Dei, you know, being inclusive, all that stuff.

Joel Case 19:51
But I’m telling you people I got treated like I was mentally disabled, when you know they didn’t. See the outward help I was suffering inside and tired, and just because I came back to work after six weeks, and that probably was a big mistake, I probably should have, and some of that was pride.

Bill Gasiamis 20:18
Let me ask you a question so I have my dad is 82 years old right now, today, as we speak, he’s in he’s waiting for surgery to have his gallbladder removed. And I’d like to say that in 82 years, he’s had a dream run. I mean, he’s had very minor, incidents for his health, etc. And one of the things that he’s had was knee surgery, which was just an arthritic knee that was injured when he was younger, that needed to have a knee replacement. And pretty much, I think, when he was a child, when he was still living in Greece, he had a he had his appendix removed, that that’s all.

Bill Gasiamis 20:58
That all the things have gone wrong with him. So when he’s when he gets to 82 and he’s realizing, you know his age, and he knows roughly the average age that people live at, and he starts to get a little bit what’s the word? I don’t know if it’s concerned, depressed or something, because now he’s in hospital, and he’s been there for seven days, and they won’t let him go until his blood stabilize and they remove his gallbladder, and he’s no longer at risk of having all the complications that are that a gallbladder that’s blocked with stones can cause.

Bill Gasiamis 21:33
So he’s really struggling with the idea that he’s unwell. What about like, you know, which is kind of understandable, but also, like, you’re 82, years old. How can you expect you’re not going to be unwell at some point? So, like, how do you is are you did you find yourself in a similar situation? What was the challenging part?

Joel Case 22:01
Yeah, because I just it felt, you know, I couldn’t, couldn’t run, I couldn’t walk, you know, it’s sort of like, and then getting up, you know, you want to fall over, and am I going to and then reading about stroke victims, you know, there’s a high incident of another stroke within three months, and I’m sitting there going counting the days get past that 90 day window, you know? But yeah, it was. And, you know, this is kind of sounds silly, but having, you know, good situation, good job. Even though they were interesting, how non empathetic some people were.

Joel Case 22:48
I was raised, I’m not very religious now, but I was raised Catholic, and sort of like going to a Catholic school for eight years ago, and nuns beating the heck out of you and all that. It’s sort of like the glass is always half full. So, you know, I’ve had a great life, but, you know, shit happens. So that part, but so I was just focused to get back and do what I could try to do, and feel, I felt lucky that I could talk I didn’t have the weaknesses, the droopy legs, things like that, when you read about but yeah, it has been, well, here’s where it gets to, you know, in October of that year.

Joel Case 23:31
So we have a cabin over in the Tetons, over about 60 miles from my house. And we get Dolores fall days. So my wife and I, we said, let’s go up one last time. Harvest Moon coming up. So it’s right on the national forest boundary over in Idaho, side of the Teton so and I have a route I run up on the floor. So we went back and I go, Well, let’s see if I can, you know, kind of test myself and see balance wise go up with the dog. So I’m up there about three miles in on the forest boundary, high up, and the dogs are barking. I thought there was, there’s cows grazing up there.

Joel Case 24:13
And I thought they were chasing cows. And I look up and it’s like, oh, biggest bull moose I’ve seen in my life. We have grizzly bear with bear, mountain lion, but moose, they’re not so I’m about 10 feet away from this damn thing, and because he was under a tree, didn’t notice it. And so long story, I’m going, Oh God, this isn’t good. It’s running season. So I try and back off, and he charges.

Joel Case 24:40
And boom, he gets me, and I’m and so I’m on the ground. Blood dropped and down my face, because I guess my head went back and cut under my eye. But and I’m thinking, first thing I’m thinking, Well, God is like, did I get another artery tear or something?

Bill Gasiamis 25:00
Wow.

Joel Case 25:00
But so I got attacked by Moose, and why he didn’t stay, they usually stay and stomp the heck out of you, but when I got up and I’m sitting there going, I gotta get to the hospital. So, long story short, called my wife. I stumbled down broken ribs and collapsed lung, and that’s when I said, God’s telling me some i I’ve had it. I can’t take this anymore. The religion cancer, stroke and now damn moose attack and but, you know, in the hospital, their little hospital and Dregs, they they did full body scan, the doctor came in, nurse, they’re all excited.

Joel Case 25:40
We haven’t had a moose attack in a long time. Wow. But I said, you know, because we’re near Yellowstone National Park, and I don’t know if you get the same thing with some of your tourists, but we call them tour ons. People, they think it’s Disney World, where Disneyland, where they go up and pet the bison, you always have stories about Taurus getting attacked. So that’s why I told the doctor. I says, you know, I feel so stupid this, you know, because we always make fun of Taurus. And here I go, get attacked by a moose. Wow, but that kind of was the luckily recovered five from that.

Bill Gasiamis 26:16
So, what period of time was all this? So from the fur, from the prostate cancer to the moose attack. What period of time?

Joel Case 26:24
9 months. It all happened within nine months. Wow. That’s too much. December 2021 and I had my stroke in January, February 2022 and then early October of 2022 the moose attack. Wow, so that was but I said, Well, things come in three so, you know, I’ll get on an airplane again now. So, so, but then that’s when I decide, you know, life is too short. I I decided to retire between some of the pressures of work and things like that. I said, it’s just I’m 60 I was 65 then I said it’s, you know, still, quote, healthy, still can do things, so it’s time to move on from.

Bill Gasiamis 27:08
Yeah, were you going through all of these things on your own? Because it is genuine, genuinely a lot to deal with. Was this somebody that you were able to talk to reach out to get support from.

Joel Case 27:23
Well, you know, my wife and I’ve been married for 44 years, and so that was, she was kind of key the dogs again, I don’t know if you’re a dog person, animal person, but they kind of got me through and forced me to exercise and walk and run, and the moral support was my wife. You know, we, we have two children. They’re my son at home. He works, but he’s still in the area. My daughter’s in Boise. But a lot of you know, people don’t really understand what you’re going through, though they really don’t, especially with the stroke.

Joel Case 27:59
Because outwardly, you look at me, I don’t seem, quote, disabled now, but I’m probably 90% of my balance. I’ll have good days, bad days, but you know, so and kind of the brain, I won’t say brain fog, but there is a little bit of, what’s interesting is, like my spatial awareness on the sides, I’m on about a half inch or so with that. But back to your question, is there anybody my wife was probably the most, you know, she’s, she’s always there for me, and we’ve been married 44 years last month, so it’s, but other than that, you know, couple close friends that that we stay in.

Joel Case 28:47
They that’s good over the last nine, three years. But you know what really hit home with me? I didn’t get one visit or card or call from any when I was in the hospital from two weeks. That’s where the work thing that that’s what really That one hurt. That was kind of one that was very, I don’t understand, still don’t understand.

Challenges of Returning to Work and Emotional Struggles

Bill Gasiamis 29:07
People that you would have been colleagues with for many years.

Joel Case 29:12
Well, yeah, I mean, and I so yeah, that that’s that part really hurt.

Bill Gasiamis 29:17
Do you think COVID might have had something to do with that, all of the trouble around access to hospitals.

Joel Case 29:23
Some of it, yeah, because you know that back then, you had to have a mask to come in and things like that. And we’re, most everybody was working remotely then. I mean, we’re going in the office once or twice a week, but it was still in the pandemic area, but a phone call could have helped, I guess, either, and maybe they didn’t want to deal with it. But that, that part, I think, was probably the thing that hurt the most during the whole period.

Joel Case 29:51
But again, having, you know, having somebody at home, because, I tell you, for the first 6 to 9 months, I was afraid to go to sleep, because this happened when I woke up. And am I going to have a stroke again in the first six months after sometimes I’d get a little bit of dizziness, sometimes at night, you know, just kind of After Effects. And that was a little, I won’t call PTSD, but I told you know the doctor I see my neurologist, I said, you know, it took a while to get through that.

Bill Gasiamis 30:26
Little bit triggering and reminiscing of the the time when it happened, and wondering, Am I having another stroke?

Joel Case 30:34
Yeah, so that type of thing. So, but I won’t say I’m over it, but I don’t like to travel by myself anymore, so you’ll be in hotel room, because I think that’d be awful to have passed away in a hotel room, but, but so my wife, my son, we he, we ended up doing quite a few things together over the last three years. Has helped a lot too. He’s we went to Scotland and did a I wanted to test myself nine months after we went and walked the West Highland way. It’s 100 miles in five days. We went from end to end up in the West, up in the Scottish Highlands.

Joel Case 31:19
And so we do a trip every year. We went to Amsterdam last. Last year, I just wanted to, because I used to work in Vienna, and always flew through Amsterdam. I always wanted to stay and see the city and go the Anne Frank House, so things like that, taking joy and living through the moment. But so he, he’s helped quite a bit by doing things, getting to know him a lot better, too.

Bill Gasiamis 31:40
And you’re testing yourself. How did you pass your test? Did you pass with flying colors? What was it like to do that 100 mile?

Joel Case 31:52
We did five days, so about 20 miles each day, yeah, I was surprisingly. It was pleasant surprise how well we did. I did during that now, there were sections where, you know, where I could just hop up on things I I’m not going to be a mountain climber anymore, you know, because it’s my balance is not good, but it’s so but, yeah, that was a great trip with him. And then we went to Amsterdam was a good trip too, because, like, you live in Australia, when you come to the stage, those are long journeys.

Bill Gasiamis 32:28
Yeah. But so from Melbourne, from Melbourne to LA, I think it’s about feel like it’s about 14 hours, or something.

Joel Case 32:38
11 hours to Amsterdam from Salt Lake because we fly either there or Seattle, so about 11 hours, but, but, you know, I’m just happy, you know, I want to do those things. I keep moving, you know, like some of the lessons learned is, you know, I, you know, always inquisitive. So I interesting about, you know, since, because I go down every year now and get an MRI. They and I meet with my neurologist. They want to make sure the stenosis, you know, on my other arteries are okay.

Bill Gasiamis 33:11
I was just wondering about that. I was just wondering about the incident with the moose.

Joel Case 33:17
Yeah, go.

Bill Gasiamis 33:21
Do you know? Did that make it harder for you to kind of get through your stroke recovery? Because that was pretty early on in the yeah recovery during nine months, yeah, because you lost over it just now, like nothing. I had some broken ribs. I had this. I had that. But how long did it take to recover from a moose attack?

Joel Case 33:45
Well, fortunately, the first week was pretty painful, because it was but I didn’t. My lungs didn’t fully collapse, which was lucky, because at the hospital, I would say the ribs healing up took about two to three months where I could feel like I was moving. Okay. You know, it was funny, because funny the hospital in little place called Driggs, probably 20 beds. So they the doctor there when they said, Well, you gotta collapse long. And they basically said, you know, we could keep you here, but if that one fully collapses, we can’t handle it, because they have to intubate.

Joel Case 34:29
You have to cut a hole, you know, and pump up. So I got a really fun ride with an ambulance over the Idaho Falls, about two hour drive with them and talking. But you know, fentanyl is a wonderful thing. I you know what they use in the hospital, because that’s what they do to make you feel a little bit better, like but yeah, the most attack, I mean, one of the things was recovering from the stroke, you know, going back up to our cabin the summer after it. Because, you know, when. Are up there. We don’t go up. It’s a lot of snow.

Joel Case 35:02
But so the first time going back up to where I got attacked, because that’s where I like to run and walk. And so that was a little bit like, yeah, I got back. I got to get back on the saddle, so I go back up again. But I’m a little more careful about looking my surroundings and all. But, and you’ve been going, like I said.

Bill Gasiamis 35:22
Years, and then you’d never come across that type of situation before.

Joel Case 35:26
We have, yeah, because that area, it’s about 800 feet up on a ridge, and I can send you a picture of me, my my wife took, I took a picture on the way of the hospital with my face. You can see it’s kind of dramatic, but, yeah, it’s that’s not where. I’ve never, we’ve lived here 40 years, and we’ve been going up there for 30 and I’ve never, I’ve seen moose in the, you know, long creeks, etc, but not up high like that. So it’s funny, this last summer up there, I was riding my bike, and if, gosh darn, there’s a moose 100 yards.

Bill Gasiamis 36:01
There’s changed in their in their habits, in their travel habits, seems like they.

Joel Case 36:06
I don’t know, it’s, you know, I’ve seen a lot of moose in my life here, and you always give them fair, you know, because they’re nuts. And I always worried what I do if I see a grizzly bear, because this is grizzly bear contrary as well. That’s always and, but so but, you know, it just kind of was the nail in the coffin for me to say, This is it. I’m retiring when I got through that.

Bill Gasiamis 36:31
Was it a bit of a rock bottom moment? Was it a little bit.

Joel Case 36:35
That was kind of, I think that, because I said on the way of the hospital, I kind of broke down and told my wife, I just can’t take this anymore. What else is going to happen? So that’s when I decided I’m just going to retire and just move on. So but, you know, I these arterials grows, you know, I’ve got my you know, dealing with doctors is an interesting journey too, because a lot of doctors. Where we live is kind of a rural area. It’s a town of 60,000 but we are fortunate. Salt Lake is about three hours away.

Joel Case 37:08
And I’m fortunate enough where I have medical insurance, it basically lets me to go anywhere. So that’s why I go anything serious for the stroke. I see a neurologist there, and she’s very good. I get an MRI every day to check on my neck. But an interesting thing is, I ask her about, well, what about heart disease? If I had arteriosclerosis and this caused that? What about my heart? Because, again, being an engineer, thing will put two to two together. Is like, Well, what about there? And she says, Well, you’re short of breath. You this, etc? I said, No, no chest pain.

Moose Attack and Its Impact

Joel Case 37:45
But so this last visit was last November, and she said she had been talking to a cardiologist. And she said, Well, why you ever had a calcium test? I go, No, what is that? So longer they basically can measure plaque build up in your arteries, your heart. So I did get one done when I had my MRI for my neck, they also did for my heart, so that actually came back. Gee, I’ve got plaque in my heart, so I don’t know what that means. I did a stress test. Passed that with flying colors, but see, I think what I found doctors.

Joel Case 38:22
I’m fairly fit after I was athletic, and so we’re on the extreme. There’s no me, you know, there’s a medium, what they’re used to deal with. And so we’re kind of on this other end. So I always kind of want to push to make sure everything’s good, because who would have thought I’d have a stroke? Yeah? Yeah, prostate cancer. Everybody gets out eventually. They live old enough. Supposedly, yeah, moose, Moose attack. Well, that’s out of left field.

Bill Gasiamis 38:50
That’s a bit out of nowhere for sure, like so what are they dealing doing with doing now, to help you with the perhaps the stenosis in the heart. Are you on blood thinners? Are you on medications?

Joel Case 39:04
Well, luckily, so with the stroke, you know, after my stroke, they put me on statins. So I’m on very high, was a high dose of statins. And also, luckily, I didn’t have to go on the blood there, except for baby aspirin. So I’m on 81 milligrams of baby Astrum, and then I’m on the stat. But they wanted to get my cholesterol down, and especially my LDL. So those are the bad cholesterol, because it was so they’ve been working hard to get below 70, and we finally did achieve that. I had to get another medication.

Joel Case 39:41
I forget what it’s called. It’s so you know, the statins work different. This is a medicine, and they added that takes it goes to your gut, where it basically takes it out of your gut, the cholesterol, so between the stat and keeping that LDL level low and then having it. Absorb more in the gut. We finally got this last blood test I had were below 70, so my cholesterol looks good. Everything so far looks good. But you know, I’m a little you know, the I guess the statins, what they do to plaque on your arteries.

Joel Case 40:16
They put fibers around it so it stabilizes those. If you have plaque build up, it helps stabilize that, so it helped prevent clot so, so, you know, I’m on a journey, and just keep been blessed. I don’t know, I know you had a stroke, and I don’t know how you dealt with the medical profession. It’s because it can be frustrating.

Bill Gasiamis 40:38
They can be I sucked. My first medical team. I was in hospital for the first two bleeds. I wasn’t happy with their approach, so I left and went to another hospital and went through that. So that was that was okay. We found the right people later, and they were the ones that supported me from the second bleed through to the third bleed, and then brain surgery. So and then I had, like you, in a short period of time, I had a couple of things that came up. So the the brain bleed was at the age of 37 so it was so was the second one.

Bill Gasiamis 41:17
By the age of 40 I needed cataract surgery. So I had that done at 40, at about, at about, yeah, that was just in my early 40s, and then at around my late 40s, somewhere, there some in the short amount of time between the cataract, sorry, mid for mid 40s, yeah. So within a few months, after my 40th birthday, I had my eye surgery, then I had brain surgery, then I recovered from that, and then by 2016 my 42nd birthday, I had to have thyroid surgery and had to have heart of my thyroid removed taken.

Bill Gasiamis 42:06
So I went through exactly the same kind of ups and downs. And it was like, Okay, well, this is, this is a lot to deal with. The cataract surgery was the most mild and simple version of it all. But the but the Yeah, the other stuff was quite traumatic, and the thyroid surgery created the same type of fatigue that neurological fatigue creates. And then trying to work out which one I was going through and what was happening was really difficult, and getting all the specialists and the neurologist and the endocrinologist all speaking the same, working together, yeah, was really impossible.

Bill Gasiamis 42:46
So it does take it out of me at that time. You know, you’re dealing with a lot. So I experienced, you know, some some emotional issues, some mental health issues, but I was seeing a counselor the whole time. How did you go emotionally and mentally? Did that impact your mental health.

Joel Case 43:07
It did in and I did see a counselor for a while because, like, I mentioned, just, I mentioned my neurologist says, you know, I kind of, I don’t like going to sleep at night because my brain, I have to sleep with listening some not music. I listen to podcasts at night. Now it just helps me, because my brain is always in chaos, I guess, overthinking, so this quiets the brain and and I did have, I did talk to a counselor for a while, and that helped a lot in the sense that I won’t. I don’t know if it was called depression, but I guess it is, you know, because, but just getting through the grief.

Joel Case 43:52
Grieving for the Joel that used to be, in some sense, but now trying to celebrate the Joel that is now, because it has. I found my wife and I are emotionally closer in a lot of ways, because we went through a lot with our daughter. She had an area for like, age 12 through 18. It was a long journey. So there’s and then trying to reconnect with our son now, so I wouldn’t miss mental illness on anyone dealing with that, but so again, and since something like the paraphrase your book is.

Joel Case 44:31
I look back, I tell my family, I said, Well, you know, this is the best thing that ever happened to me in a lot of ways, it’s because I have a lot more empathy. I won’t say I’m not depressed. I you know, good run, good walk with the dogs being retired, sure helps a lot. And but, you know, you think about your mortality too. What have I done? What have I done? And try so that part. But you know, it’s like trying. Of each day, but yeah, there was some depression there.

Joel Case 45:02
Especially after the low point with the moose attack, and that’s why I made a decision to retire to help talk with somebody about things that happened at work, things like that. But you know, another thing that it’s kind of funny when I was in rehab, one of the things they did to help you on rehabilitation and the brain, get the brain working again. They use a we counsel to do play tennis and golf like that, because I took up golf again after my kids went away, my wife and I, she said, let’s start golf again.

Joel Case 45:38
And so one of the things I was thinking up there in the hospital. I was looking out the window. It’s like, gosh, you know, I can’t die yet, because one of the dogs going to do. What am I wife going to do? And then I’m thinking, Am I ever going to play golf again? But I have, it helps.

Bill Gasiamis 45:59
It seems, it seems bizarre, but it’s not. I mean, it’s just the brain trying to work things out, you know, just trying to navigate it and go, like, what do I do? You know, your overthinking brain? Was that something that you always were that made you ideal for engineering? Or did the engineering create the overthinking brain?

Joel Case 46:22
I think it was more Gosh, that’s a good question. I’ve always been a little anxious, and maybe because being raised, I won’t say, a dysfunctional family, but probably a lot of that was being the youngest I have two older sisters now. They’re both both in Florida, so but I think part of the brain, and then my childhood, my dad was an alcoholic, and so some of the dysfunction with the family and just led the anxiety and then overthinking so that probably contribute to it. And and I mentioned I did travel a lot in my job, mostly in the States, but so I wasn’t there.

Joel Case 47:06
And being half Irish, you know, before the stroke, and traveling like I did, I think Delta Airlines turned me into an alcoholic with all the upgrades. So that’s one thing that was lessons learned, a good thing benefited the stroke. I learned I wasn’t an alcoholic, because after the stroke, I like beer, you know, I like a good beer and some wine too. But after the stroke, I I’m a lightweight. Now I just can’t handle more than one or two beers and just and I asked.

Bill Gasiamis 47:40
I would say, I would, I would encourage you not to drink at all.

Volunteer Work and Personal Growth

Joel Case 47:45
Well, that’s I basically don’t Yeah, because I here, so, because I talked to my neurologist, because I had a terror, this almost embarrassed to talk about it. But so about nine months after my wife’s roommate from college, we used to go back. They live outside New York City. We’d go back and visit we hadn’t seen them since COVID, so we dropped the dogs off here in Boise and daughter, and we flew back to see them, and flew, you know, through New York City. But we I got upgraded, so I had a couple glasses of wine on the plane and hadn’t eaten long day flight, I blacked out totally.

Joel Case 48:26
And it’s like, my my wife, I was having another stroke. So that’s when I basically cut off. I talked to neurology says, Well, you know, cerebellum, that’s where alcohol goes. So another good thing, you know, that basically, you know, cut out drinking. So, but it was interesting.

Bill Gasiamis 48:40
I’m curious about the drinking. Was it at the level? Was it at the at the level where an Irish person might say, I’ve just had a couple, which is a lot for every other normal person. And therefore, what I’m trying to say is, what I’m trying to say is like, would that be potentially part of the cause of the atherosclerosis? Because that’s what a lot of alcohol can do?

Joel Case 49:02
Yeah, I asked the doctor, and she says, Well, you don’t seem to have your liver function. Everything looks good. You should have liver disease. And and again, I I didn’t drink, you know, like some people I knew in college, drinking case of beer, things like that. It’s just so maybe episodical Drink, maybe binge drinking, when I was on travel, binge drinking, yeah, okay, yeah. So that type of thing. So, but you know, again, what came out of this was, can’t do that anymore, which is a good thing, so, but you know, I’m on, you know, gotten through a lot three years out.

Joel Case 49:44
So still, you know, a little anxiety, but I live each day as a time, and I can’t I think some of the biggest lessons learned is from all of this is you got to keep moving. Keep moving. Because all the doctors I’ve seen. And if I wasn’t fit, because, you know, when I go to my doctor appointments, urologist, for, you know, I still get my blood checked and for my neurologist, and then you go in the cardiologist, you you look in the waiting room, and it’s, it’s, you look around and, my gosh, we’re a pretty obese nation in this country.

Joel Case 50:22
I don’t know what is in Australia, but I look around and people in wheelchairs on oxygen, and it’s like, gosh, so I just feel blessed and fortunate that I was able to get through this, and who knows where we’ll end up. But I feel like I’m in a good place. I’m 68 I don’t know how much longer I have in this world. And again, I think you know the stroke, with the medicine, everything, I feel pretty good. There’s no guarantees, no guarantees with the cancer. But I have done some volunteer work. I think that’s been very fortunate.

Bill Gasiamis 50:58
Well, Cohen, tell me about that.

Joel Case 51:00
Yeah, my wife always wanted to learn how to fly fish. So after I got out of the hospital, idle falls, fly fishing is big out here, and so the volunteer work is with a group that cancer survivors, men with cancer. It’s they basically through fly fishing. They take them out on retreats. But it’s more. I mean, the fly fishing is incidental. It’s basically get men talk about their cancer, because men don’t like to talk about things.

Bill Gasiamis 51:31
It’s a scam. The Fly Fishing is the scam.

Joel Case 51:35
Yeah, that’s basically it. It’s just to get and so I help volunteer as I and again, I I went as a guest being a cancer survivor because a friend of mine with this organization after the weekend, it’s very emotional, because you learn about because this volunteer work is you sit with a group of men cancers and you help facilitate them to talk about you don’t have them focus, but Just tell them about themselves, get their mind off of it, but also that you’re not alone, because men are not, I won’t say not like women.

Joel Case 52:09
But you know, it’s trying to get people talking and that you’re not on this journey by yourself. Yeah. So it was very emotional when I went through it, just to hear a talk with other men about it. And now my story was kind of interesting, because prostate cancer, stroke and then the moose attack when I first went to this thing. So they wanted to bring me back as help, be a facilitator.

Joel Case 52:34
So I do that about three times in the summer with they, they go out to a lodge up in the mountains, and we basically three day weekend where we teach them how to fly fish or but it’s mainly about the group chat and just talking about things. So yeah, as you say, the fly fishing.

Bill Gasiamis 52:57
It’s the lure, the fly fishing is the lure. And then these guys come in, and they take the bait, and then, okay, now let’s talk.

Joel Case 53:05
Yeah, and it’s very, very powerful, actually.

Bill Gasiamis 53:09
So, yeah, absolutely. So it sounds like it’s been part of what’s shaped your life in a meaningful way after all of these incidents, was your life lacking that type of meaning or that type of that part of it before stroke, was it just business all the time, like, what was it like?

Joel Case 53:31
Yeah, it was, you know, I look back on my career and yeah, it I focused, I I had a lot of self centeredness, I guess, and hubris and self importance, and so didn’t have much empathy. Probably, you know, raised as I was, you know, just do your job. Stupid type of attitude, you know, that terrible to say, but I don’t want to hear about your problems. So, you know, so And an interesting thing too, is there, there is karma in the world, because my wife has had MS multiple sclerosis for about 35 years now.

Joel Case 54:13
You never know she’s it’s very, very mild case, but you know, she has balance problems. But I never understood, and so I didn’t have the empathy, probably with her. So that’s where the, you know, before the stroke, yeah, it just because, you know, it’s very you have to ring somebody to get you out of bed. You have the bathroom, you know, take a shower and all that kind of stuff, because I could not walk, I couldn’t do anything. So that part just made me introspective also, but looking back on things, and it’s like, Gee, not that I have regrets, but yeah, I could have done things different.

Joel Case 54:54
But it is what it is. And you just try and build upon lessons learned on that. So again. And as you’ve said, a stroke was probably the best thing that happened to me.

Bill Gasiamis 55:04
Seems like it’s been a line in the sand moment for you, where it’s enabled you to reevaluate things, look at things differently. The new experiences have made you see other people’s lives differently.

Joel Case 55:19
The whole I was very judgmental before.

Bill Gasiamis 55:21
Yeah.

Joel Case 55:23
In my mind. And so that’s probably not a good thing. So, yeah, no, it is not a good thing.

Bill Gasiamis 55:30
It’s definitely not. So you’re kind of like, like, I was ignorant, and as a result, you know, I say it often in the podcast episodes. You may have missed it in but I say when I used to see people sitting in a wheelchair, I used to think they were just sitting down. Now I knew that deeper down, you know, their leg didn’t work, or their spine was injured, or something like, I knew that logically, but I just thought that there wasn’t, it was not that much of a big deal that somebody’s in a wheelchair, and I didn’t actually ever have a proper moment where I contemplated somebody’s life or situation.

Bill Gasiamis 56:17
But then after my episodes, I realized, well, then there’s emotional challenges, there’s physical challenges, there’s probably financial challenges, there’s probably like, I mean, how could you be so naive and so ignorant? But when your life hasn’t had that level of when you haven’t had that kind of experience in your life? Well, it’s not it’s not that bad that you are that ignorant. It’s just you cannot sometimes appreciate something unless you actually know somebody who went through it or has been through it, and you’re able to have the deep and meaningful conversations.

Bill Gasiamis 57:02
And you’re able to see more of the struggle. Because, of course, if I don’t know that person in a wheelchair, I don’t see the struggle. I just see somebody sitting in a wheelchair getting pushed around, and I’m thinking, well, at least he’s got a wheelchair and he can push himself around, and he can get from A to B, but gosh, man, like it is just and it is not. It’s not something to really feel bad about. I don’t think if you stay that ignorant after you’ve been through something like that, and you’re still terrible to people who are struggling, and you’re still not empathetic.

Vertebral Artery Occlusion: Reflections on Life and Future Plans After

Bill Gasiamis 57:37
Well then, yeah, then you’re a bit of a thick head, and you know, you don’t deserve empathy, either, but this is what I think. One of the reasons why we go through difficult things is, I think it’s so that we can become more more aware, more educated, more understanding, and we can gain wisdom, and then we could hopefully put that into practice and make a difference to people. Not just go to work and put money in your bank account, but also volunteer, connect with people in a different way, which helps to heal them, but it also helps to heal us, because we’re all traumatized.

Bill Gasiamis 58:19
Everyone’s living with some kind of a trauma. And we, we’re not, you know, we don’t have the gift of being full time philosophers who can just gather somewhere and just talk everything through and work it out and get to the bottom of it and then, you know, and then move on from it. We’re just, we’re not, we’re not being trained that way.

Bill Gasiamis 58:44
We live in a industrial type of society, you know, schooling has been, let’s prepare these people for working in a factory or a line or somewhere, you know, so we are still doing what we’ve been trained to do, and we need to give ourselves a little bit of, you know, leeway, a little bit of grace as well.

Joel Case 59:06
Yeah, compassion and yeah. So, you know, it’s interesting, because since my stroke, people I worked with, know, over the years here in Idaho, couple people have actually had strokes, heart attack or blood clots. And they actually reached out to me, which has been very well I share with them, and which has been very Gosh, what’s the word? I won’t say self satisfaction, but it’s just been okay. This is anything I can impart to help them has been very, very helpful to me and hopefully to them.

Bill Gasiamis 59:45
Full Circle, sounds like it’s come full circle.

Joel Case 59:49
Yeah, because one was when I was at the cardiologist guy worked with he’s there, and he just said, have the stroke. And he was in, looked pretty bad shape, so I he followed up with me. And he’s doing really, really well. So that’s, that’s, so, you know, it’s, there’s no coincidence in the world, I guess, in some sense. But that’s been also, like I said, it’s been a interesting three years for me, and interesting journey. You mentioned financial I mean, one, I don’t know what you you have beautiful health care.

Joel Case 1:00:22
But you know what I learned about the hospital systems here is, what a mess, because my two week stay, I had to deal with like five different companies that because hospitals here are contracting out, they’re being bought by hedge funds, and the emergency room was based out of St Louis. I got a separate bill. The physical therapy was based out of Salt Lake. And this is one hospital, so I mean that, I won’t say it adds stress, but then you’re dealing they’re calling you up.

Joel Case 1:00:53
We’re going to send you the collections. Well, wait a second, what are you talking about? This is a hospital on my insurance provider. But long story short, that’s just another stress factor that I don’t know if you guys have to deal with that over there.

Bill Gasiamis 1:01:06
Not yet, not yet, thankfully. So we have some private hospitals, but most of the public, most of the hospitals are public, and that’s what you just said. Is more scary, the scariest thing I’ve ever heard hospitals are owned by hedge funds. My gosh, a lot of them are those two things should never come together.

Joel Case 1:01:28
Well, because what happens is, it’s all about profit and in and out, in and out.

Bill Gasiamis 1:01:35
So yeah, I mean, it’s simple, similar with us, there’s never enough beds for everybody to be in there at the right at the same amount of time, which is cool, right? I get that. Get people healthy well enough to go home and deal with it themselves. I kind of like that. That’s perfectly fine, but owned by a hedge fund which is relying on profit, my gosh, a hospital should not be a for profit organization. It shouldn’t make a loss, but it should not be a for profit organization.

Joel Case 1:02:05
I don’t know if that’s interesting, comparing the hospital Go ahead, comparing the hospitals here, because I was hospitalized here with my stroke, but the surgery was at a university hospital. I see my doctors down for my follow ups at University of Utah, just totally night and day. And the difference in how they bill and the service you get, because they’re not for profit, they’re university teaching hospital here, like I said, we have one major hospital, and it’s owned through a hedge fund investor out of Nashville, Tennessee.

Joel Case 1:02:44
But like I said, it that just it took me three months to get through all the stuff on, dealing with, getting all the and I have good insurance. Yeah, so that’s stress factor, which you guys don’t have to deal with. I hope you never have to, because in my mind, it’s a shame the richest country in the world we have people that don’t have insurance.

Bill Gasiamis 1:03:04
Yeah, it’s crazy. Doesn’t matter which side of politics you’re on. That is something that both sides of politics have let the public down with, like that. They’ve definitely dropped the ball with that one. And I don’t like, I don’t like the fact that you hear that stroke survivors just got $150,000 bill, and they’re not working, and they’re going to be sent to collections. I mean, how? There can’t be anything more ridiculous. But I understand we got through it.

Bill Gasiamis 1:03:52
Know, can you hear our connection is struggling right now, for some reason, our connection is really struggling. Hear me. I can barely hear you, but let’s see if it settles down.

Joel Case 1:04:09
Gosh, hope we don’t lose.

Bill Gasiamis 1:04:11
I think that might be our sign to wrap it up. But let me just ask you one last question, so if you could share one lesson from your journey with somebody newly diagnosed, what would it be?

Joel Case 1:04:28
Keep moving. Don’t give up. Reach out to people. That’s three things, isn’t it?

Bill Gasiamis 1:04:36
That’s plenty you can keep going.

Joel Case 1:04:43
Yeah, but those three things keep moving. Never give up and reach out to people, because deep down, most people are sympathetic once they know your story. But yeah, I’ve in. So if you go through life with one good friend, that’s all you need in life.

Bill Gasiamis 1:05:05
Joel’s journey isn’t a tidy story of recovery. It’s a story of endurance, to finding strength in small steps, of learning to see with new eyes. I’d love to hear what stayed with you from today’s episode, what part of Joel’s story spoke to you and your experience. Let’s keep this space one where stroke survivors feel seen, heard and supported. If you’re ready to go deeper, The Unexpected Way That A Stroke Became The Best Thing That Happened. My Book shares stories tools and circuit breakers to help you shift toward growth.

Bill Gasiamis 1:05:39
Check it out at recoveryafterstroke.com/book, and if you’d like to keep this work going, hit the super thanks on YouTube. Join us on Patreon. And if Joel story moved you, please share this episode. Someone else might need it today, and remember one small win at a time. That’s how recovery happens. See you next time.

Intro 1:06:02
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