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.

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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.

Lyme Disease Diagnosis and Treatment

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.

The Importance of Self-Compassion and Support after Stroke in Pregnancy

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.

The post Rebuilding Life, One Step at a Time: A Survivor’s Guide to AFOs That Work appeared first on Recovery After Stroke.

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
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 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
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 1:06:32
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 1:06:57
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 1:07:24
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 Vertebral Artery Occlusion Nearly Took Him Down – How Joel Fought Back appeared first on Recovery After Stroke.

Recovery from Locked-In Syndrome: Dylan’s Journey of Strength and HopeIntroduction

When we hear about stroke recovery, we often imagine slow progress, physical therapy, and determination. But for some survivors, the road begins at an even more unimaginable place: locked-in syndrome.

Dylan Alford’s story shines a light on the reality of recovery from locked-in syndrome, a journey filled with emotional battles, small victories, and relentless courage.

What Is Locked-In Syndrome?

Locked-in syndrome is a rare and severe neurological condition where a person is conscious and aware but unable to move or speak due to paralysis of nearly all voluntary muscles. It’s often caused by a brainstem stroke, as was the case for Dylan.

Key fact: Recovery from locked-in syndrome varies greatly between individuals. Progress may be slow, but meaningful improvements are possible, as Dylan’s story shows.

Dylan’s Story: From Locked-In to Rebuilding Life

Dylan experienced his third stroke, a brainstem stroke, in 2023, which resulted in locked-in syndrome for two weeks. Trapped in his body, fully conscious but unable to move, he began a recovery journey that continues to this day.

Over the months that followed, Dylan worked tirelessly to regain basic functions:

• Speech: With the help of a nasal device and intensive therapy, Dylan can now speak, despite ongoing fatigue and effort.
• Mobility: Dylan uses a walker but dreams of walking faster and more confidently.
• Emotional health: Dylan battles PTSD, pseudobulbar affect, and emotional ups and downs while practicing emotional awareness and resilience.
  

The Emotional Weight of Recovery

Dylan’s experience highlights the often invisible side of stroke recovery — the emotional and mental toll.

He bravely shares:

• The trauma of waking up locked-in and the fear that still visits him at night.
• The emotional lability that leaves him crying easily over small things.
• The challenge of staying hopeful when progress feels slow.
  

Dylan’s advice: “Be aware of your emotions. Take control where you can — through food, movement, or mindset.”

Tools That Helped Dylan’s Recovery

Nasal speech device: Helps redirect airflow, making speech less exhausting.

Baclofen pump: Manages spasticity, offering the potential for smoother movement.

Support community: Connecting with others like Duncan and Clodagh through the podcast made Dylan feel less alone.

Small Steps, Big Hopes

Dylan’s goals are simple but powerful:

• Walk faster and more confidently.
• Strengthen his speech and reduce reliance on devices.
• Stay emotionally resilient through ongoing challenges.
  

What Can We Learn from Dylan’s Recovery from Locked-In Syndrome?

Progress is possible, even after locked-in syndrome.

Community and connection matter.

Every small step counts.

Dylan’s journey reminds us that stroke recovery isn’t just physical — it’s emotional, mental, and deeply personal.

Frequently Asked QuestionsCan people recover from locked-in syndrome?

Yes. While full recovery is rare, many people — like Dylan — achieve significant improvements in speech, movement, and independence.

What helps with recovery from locked-in syndrome?

A combination of therapy, assistive technology, emotional support, and medical interventions like a baclofen pump can make a big difference.

Final Thoughts

Dylan’s story shows that recovery from locked-in syndrome is about more than regaining movement. It’s about reclaiming hope, purpose, and identity.

If you or someone you love is navigating life after a stroke, know that you are not alone. Community, determination, and small steps forward can create meaningful change.

Recovery from Locked-In Syndrome: Dylan’s Real-Life Journey Back from the Brink

Dylan’s recovery from locked-in syndrome shows the emotional, physical, and mental battles stroke survivors face every day.

Dylan Alford’s Instagram

Listen to my interview with Duncan Campling (Episode #133) — another survivor of locked-in syndrome.

Check out Clodagh Dunlop’s story (Episode #38) for further inspiration.

Explore my book The Unexpected Way That a Stroke Became the Best Thing That Happened

Highlights;

00:00 Dylan Alford’s Introduction and Background
03:56 Radiation’s Long Shadow: Dylan’s Journey from Brain Tumor to Stroke
09:23 Dylan’s Medical History and Stroke Details
16:08 From Coordinator to Survivor
20:52 Emotional and Mental Challenges
31:35 Daily Life and Rehabilitation
43:30 Baclofen Pump: Dylan’s Hope for Regaining Movement
47:01 Not Alone: How the Podcast Helped Dylan Through Recovery

Transcript:

Dylan Alford’s Introduction and Background

Bill Gasiamis 0:00
Before we dive into today’s episode, a sincere thank you to everyone who’s taken a moment to comment, leave a review, support the show on Patreon, click the YouTube super thanks button, buy a copy of my book, or even just not skip the ads. Your support means more than you know you’re helping this podcast reach someone who, like Dylan once did feel trapped physically, emotionally or both, you’re helping them feel seen, and you’re keeping this work alive. Today’s episode is raw, real and quietly powerful.

Bill Gasiamis 0:37
Dylan Alford faced something few can imagine: locked-in syndrome after a brainstem stroke. For two weeks, he could see, hear and think, but he could not move or speak. Since then, he’s been working every day to reclaim what was lost, speech, movement, and independence. His progress is hard won. His emotional strength inspiring, and his journey a reminder that even the smallest steps forward matter. If you’ve ever felt like recovery was too heavy, or that no one sees the fight behind your progress, this conversation is for you. Let’s get started. Dylan Alford, welcome to the podcast.

Dylan Alford 1:20
Thank you. It’s nice to meet you.

Bill Gasiamis 1:27
It’s nice to meet you too. Tell me a little bit about that device that you just put on your nose. What is that and how does it help you?

Dylan Alford 1:35
Breathing is just a nose blow up
, it helps by breathing so I can talk easier.

Bill Gasiamis 1:55
You had a brainstem Stroke?

Dylan Alford 1:58
Yeah.

Bill Gasiamis 1:59
What was it caused by?

Dylan Alford 2:23
When I was younger I had a radiation in my blood vessel. So I guess a blood clot is it.

Bill Gasiamis 2:27
So it was a blood vessel?

Dylan Alford 2:31
Yeah it was small.

Bill Gasiamis 2:34
A really small blood vessel.

Dylan Alford 2:36
And I had a blood clot.

Bill Gasiamis 2:42
You had a blood clot that went in there and got stuck in there.

Dylan Alford 2:45
Yeah.

Bill Gasiamis 2:46
Okay, what caused the blood clot? Do we know?

Dylan Alford 2:49
I don’t know.

Bill Gasiamis 2:53
Okay, how old were you?

Dylan Alford 2:57
This was in 2023. But this is my 3rd stroke.

Bill Gasiamis 3:11
So the last incident in the brain stem was in 2023 but this is your third stroke.

Dylan Alford 3:16
Yeah.

Bill Gasiamis 3:18
Okay.

Dylan Alford 3:21
I’ve had my first in 2019.

Bill Gasiamis 3:28
In 2019 you had your first one, and was it the same kind of stroke, a similar type of thing in the same place?

Dylan Alford 3:36
No, it was an ischemic.

Bill Gasiamis 3:44
Schemic stroke?

Dylan Alford 3:45
Yeah.

Bill Gasiamis 3:46
In a different location?

Dylan Alford 3:48
Yeah on my left.

Bill Gasiamis 3:53
On your left side.

Dylan Alford 3:56
Yeah.

From Brain Tumor to Recovery from Locked-In Syndrome

Bill Gasiamis 3:56
Why are you having multiple strokes? What’s causing it?

Dylan Alford 4:02
Well my neuro surgeon says it was, when I add my radiation.

Bill Gasiamis 4:18
Okay when it was what? What was it? What was the last part you said?

Dylan Alford 4:24
It was from the radiation.

Bill Gasiamis 4:28
From radiation.

Dylan Alford 4:29
Yeah.

Bill Gasiamis 4:31
Okay, so radiation from what?

Dylan Alford 4:34
Well when I was younger, I had a brain tumor. Yeah, so I’ve had so much fun.

Bill Gasiamis 4:55
You’ve had heaps of fun, man.

Dylan Alford 4:57
“Oh, yeah.”

Bill Gasiamis 4:58
Okay, shit. It so you had a brain tumor when you were younger. In order to treat the brain tumor, they use radiation, yeah, and the radiation, one of the side effects is it causes damage to the blood vessel, and as a result of that, it makes it smaller.

Dylan Alford 5:21
Yeah, and that’s how I get the blood clot.

Bill Gasiamis 5:24
That’s how you get blood clots, because of the passage for the blood to go through is smaller. It changes the blood flow. The blood flow causes clots and it gets stuck in the blood vessel.

Dylan Alford 5:31
Yeah, exactly.

Bill Gasiamis 5:47
Wow, man, how old were you when you had the brain tumor treated?

Dylan Alford 5:53
Since 6 and 12.

Bill Gasiamis 5:56
Since you’re 12?

Dylan Alford 5:58
Well, 6 up to 12.

Bill Gasiamis 6:06
So you had the brain tumor diagnosed earlier. It has been treated up until the age of 12.

Dylan Alford 6:13
Yeah.

Bill Gasiamis 6:13
Okay.

Dylan Alford 6:14
Now I just hit it more, and it gets serious every year.

Bill Gasiamis 6:23
Okay, and the brainstem stroke was the most serious stroke that you’ve had of all.

Dylan Alford 6:32
Yeah, my first stroke I’ve been having in about two months, but not this one. It’s been about a year and a half.

Bill Gasiamis 6:58
Before this brainstem stroke, did you have deficits that were related to the brain tumor?

Dylan Alford 7:09
Memory loss.

Bill Gasiamis 7:11
Memory loss, but you were physical, you were active.

Dylan Alford 7:15
Yeah.

Bill Gasiamis 7:17
And since the brain stem stroke, that’s the one that has caused a spasticity?

Dylan Alford 7:24
Yeah.

Bill Gasiamis 7:25
Altered your speech as well.

Dylan Alford 7:27
Yup.

Bill Gasiamis 7:28
And then also made it difficult for you to be mobile so you’re in a Wheelchair.

Dylan Alford 7:35
Yes.

Bill Gasiamis 7:36
Okay, it’s been a crazy journey.

Dylan Alford 7:42
Yeah. You know who has been helping me on the talking.

Bill Gasiamis 7:54
Duncan Campling.

Dylan Alford 7:55
He has been everything than I was, and so has Clodagh.

Bill Gasiamis 8:02
Clodagh Dunlop.

Dylan Alford 8:10
Yeah, both of them.

Bill Gasiamis 8:11
That is so good to hear that you’ve connected with Duncan Campling and Clodagh Dunlop, who Clodagh I interviewed so many years ago, very, very early on in the podcast. And let me, I’m going to go and get the details of when I interviewed them both. So that we can make sure the links are there in the show notes. Clodagh was so many years ago. She was episode 38 I mean, there’s 350 episodes.

Dylan Alford 8:52
I was in the hospital that was the first episode, that was the first episode, I’ve watched.

Bill Gasiamis 9:05
Wow, man, and then, and then Duncan was episode 133.

Dylan Alford 9:11
And what am I?

Bill Gasiamis 9:17
And you are going to be something above 350.

Dylan Alford 9:21
“Oh, man.”

Dylan’s Medical History and Stroke Details

Bill Gasiamis 9:23
Yeah, okay, that is really cool. Man, I’m so glad to hear that you’ve been able to find other people that have been through what you’ve been through. Is that a good thing?

Dylan Alford 9:35
Yeah, they have helped me a lot.

Bill Gasiamis 9:42
Have you had the opportunity to zoom with them, or are you just talking with them via email?

Dylan Alford 9:49
Can talk on Messenger but we sometimes talk.

Bill Gasiamis 10:04
On zoom.

Dylan Alford 10:06
Yeah, well I barely talk to you on Instagram.

Bill Gasiamis 10:15
Instagram Messenger.

Dylan Alford 10:18
Yeah.

Bill Gasiamis 10:19
Yeah, okay, wow, man, let’s pause here for a moment. By now, you’ve heard Dylan share what it’s like to wake up locked in, to fight for every word, every step, and to carry that emotional weight day after day. If you’re listening and thinking, This feels familiar, please know you’re not alone. The struggle to speak and move to be understood. It’s real and it’s exhausting. If this part of Dylan’s story resonates with you, drop a comment on YouTube. What’s been the hardest part of your recovery that people don’t see?

Bill Gasiamis 10:54
A big thanks to everyone who helps this show continue. Your super thanks on YouTube, your support of the book and my amazing Patreon supporters. All right, let’s return to Dylan as he talks about the emotional challenges, the tools that help and what keeps him pushing forward. So is it? Who do you live with?

Dylan Alford 11:18
My Wife.

Bill Gasiamis 11:20
Your wife and where are you living? Which country?

Dylan Alford 11:25
I live in, Texas, USA.

Bill Gasiamis 11:32
Okay, so the time zone is pretty good between you and Duncan. You guys can usually catch up at reasonable times.

Dylan Alford 11:42
Yeah.

Bill Gasiamis 11:46
He’s funny. Him and I communicate every so often as well. Through Instagram, he sends me messages, and I send him messages back. And sometimes he sends me terrible emails, and sometimes I sent him terrible emails. Yeah, brilliant. So he’s been on the journey for quite a few years now, and he’s He’s always making improvements, and he’s always looking for a way to recover and overcome his Duncan’s lock locked in syndrome from the brain stem. Stroke was in 2018 did you have locked in syndrome as well?

Dylan Alford 12:38
Two weeks.

Bill Gasiamis 12:40
Two weeks, when you woke up in the hospital, when you were awake, but you’re you couldn’t move anything. What is that like?

Dylan Alford 12:54
I don’t know, I was like playing, I’m telling me “I don’t wanna be here.” and I was like, there has to be a night there.

Bill Gasiamis 13:20
Wow, and you could hear everybody and see everybody around you?

Dylan Alford 13:26
Yeah.

Bill Gasiamis 13:27
And could you move your eyes?

Dylan Alford 13:30
Yeah, and I was barely moving my head.

Bill Gasiamis 13:41
You know with your voice, is that as a result of the tracheostomy? What was that as a result of?

Dylan Alford 13:48
Well, when I had locked in I couldn’t talk for one month.

Bill Gasiamis 14:03
One month.

Dylan Alford 14:04
Yeah.

Bill Gasiamis 14:05
And now is it very tiring to talk?

Dylan Alford 14:11
A little, but not with this.

Bill Gasiamis 14:18
That makes it easier?

Dylan Alford 14:20
Yeah.

Bill Gasiamis 14:20
Yeah, and then your that just makes it change the airflow somehow, does it?

Dylan Alford 14:29
Yeah.

Bill Gasiamis 14:40
All good, all good?

Dylan Alford 14:42
Yeah.

Bill Gasiamis 14:43
Okay, and that meant, how long did you spend in hospital?

Dylan Alford 14:48
Well I was at different hospitals and rehabs for about 1 year.

Bill Gasiamis 15:01
One year.

Dylan Alford 15:01
Yeah.

Bill Gasiamis 15:09
One year, two different hospitals.

Dylan Alford 15:14
Well more than one, 3 or 4.

Bill Gasiamis 15:23
And when you came home, you came home to the house that you were living in beforehand.

Dylan Alford 15:33
Yeah, we moved.

Bill Gasiamis 15:38
You changed location, was the house that you moved into, was it accessible? Easy to get around with your wheelchair?

Dylan Alford 15:52
Well, when I first had hope, it was hard, but now I had to use to it now.

From Coordinator to Recovery from Locked-In Syndrome

Bill Gasiamis 16:08
Okay, and what about work? What kind of work did you do beforehand?

Dylan Alford 16:14
I worked at a hospital and I was a volunteer coordinator, and I also worked with animals.

Bill Gasiamis 16:37
Volunteer coordinator at the hospital, and then you also worked with animals for?

Dylan Alford 16:47
Volunteer coordinator for that too.

Bill Gasiamis 16:57
Okay, so sounds like volunteer coordinating was your thing?

Dylan Alford 17:01
Yeah.

Bill Gasiamis 17:02
Okay, so your left side was that the side that is not back on board yet, is that the side that’s not back on board? Were you left handed or right handed?

Dylan Alford 17:20
I’m right handed.

Bill Gasiamis 17:23
Okay, I see.

Dylan Alford 17:23
But with my first stroke I was my right hand.

Bill Gasiamis 17:35
For something you’re, what was it?

Dylan Alford 17:39
My first stroke it was my right hand.

Bill Gasiamis 17:48
So your first stroke caused damage to your right hand, and the second stroke caused issues on the left side.

Dylan Alford 17:49
Yep, but now my right hand was a lot better now.

Bill Gasiamis 18:11
But your right hand is a lot better now, you use that to control your, I believe your wheelchairs, is it an electrified wheelchair?

Dylan Alford 18:26
It’s manual.

Bill Gasiamis 18:29
So do you have people coming into the house to care for you, or is your wife doing a lot of that heavy lifting, so to speak?

Dylan Alford 18:40
No, now I’m pretty independent on my own, even though I’m really slow.

Bill Gasiamis 18:57
So you you’re independent on your own, it takes a bit longer to do things.

Dylan Alford 19:03
Yeah.

Bill Gasiamis 19:05
You can get to the bathroom, you can get to eat and make something to drink.

Dylan Alford 19:12
Yeah.

Bill Gasiamis 19:13
Okay.

Dylan Alford 19:16
Now, before when I was lost in and then even a little bit after, I was so weak. I needed help with everything.

Bill Gasiamis 19:39
You were so weak. Well, not moving all that time, there would have been definitely muscle loss and function loss, and then the injury would have caused the same thing, movement loss and function loss and all that stuff. So you had a lot of different things that needed to overcome and rehabilitate. And your rehab, it’s still ongoing, of course. How often do you go to rehab?

Dylan Alford 20:10
Well, right now, it’s on hold until I have a Back Baclofen Pump.

Bill Gasiamis 20:23
A pump of some sort. What was that pump?

Dylan Alford 20:27
It’s for the spacticity.

Bill Gasiamis 20:34
Okay, so the spasticity is getting in the way of your rib.

Dylan Alford 20:41
Yeah, it makes me move so slow.

Bill Gasiamis 20:48
It painful as well?

Recovery from Locked-In Syndrome, Emotional and Mental Challenges

Dylan Alford 20:52
It was, but not anymore.

Bill Gasiamis 20:56
Okay, so you’re you’re not experiencing pain. Are you on medication to help you? What kind of medication that you on?

Dylan Alford 21:09
I’m on Back Baclofen Pump, and some aspen, and if better, it might end on October.

Bill Gasiamis 21:27
So you’re on a few different medications. Okay, so what is the what does your week look like? How do you occupy your time during the week. What does it start off like on a Monday? And how do you go through that week?

Dylan Alford 21:47
Well, now I try to work out as much as I can and build strength.

Bill Gasiamis 22:02
Build strength and work out as much as you can.

Dylan Alford 22:05
Yeah, and I said to this, I try some tips in my time of different things like that.

Bill Gasiamis 22:20
Yeah, so you so you do as much as you can, so you’ve been in this situation for a little while now. It’s affected you physically, I imagine it’s also affected you emotionally and mentally as well.

Dylan Alford 22:39
Yeah.

Bill Gasiamis 22:40
Okay, that seems like I hit a topic that we need to discuss then, so tell me about the emotional and mental side of it. What is the biggest challenge that you face in that space?

Dylan Alford 22:55
Well, I kind of have PTSD from last year some times when I’m asleep. I think I’m still locked in.

Bill Gasiamis 23:19
Okay. So the PTSD is related to the trauma of waking up locked in, and then you go to sleep, and you have to fight, and you have to catch yourself and remind yourself that you’re not locked in, that you’re asleep.

Dylan Alford 23:42
I am, also many times my emotions are all over the place. I cry about every little thing.I’ll be watching cartoons and I’ll randomly cry, it’s so annoying.

Bill Gasiamis 24:12
I know the feeling I experienced something similar. You know that condition is common, pseudobulbar affect, it’s called.

Dylan Alford 24:24
I know I have a friend who has a stroke that have this too. So, at least I’m not the only one.

Bill Gasiamis 24:44
Yeah, you’re not the only one. So your emotions are all over the place. And does do you also range from crying to angry and frustrated and all that kind of stuff? Yeah?

Dylan Alford 25:01
Well, I was, but now I have a medicine for my anger and my depression, so it helps me stay calm.

Bill Gasiamis 25:23
Antidepressants and that helps the situation a little bit and keeps you a little calmer.

Dylan Alford 25:31
Yeah.

Bill Gasiamis 25:32
Yeah, it’s a lot to deal with, isn’t it? All this stuff, heaps to deal with it.

Dylan Alford 25:37
Well, at least I’m having it now, so I know how to prevent it in the future.

Bill Gasiamis 25:51
So it’s about being aware of it and then taking the right steps and precautions and making sure you prevent it.

Dylan Alford 26:00
Yeah, I’m so much healthier now with what I eat.

Bill Gasiamis 26:11
Okay, so you be healthier than you used to be.

Dylan Alford 26:15
Yeah.

Bill Gasiamis 26:16
okay, how bad was it before? Were you unhealthy?

Dylan Alford 26:19
Well, I wasn’t really bad but I just neglect how would I eat or drink.

Bill Gasiamis 26:35
So now you understand the connection of food to helping your brain heal and recover and for you to get more physical and to improve, basically.

Dylan Alford 26:47
Yeah.

Bill Gasiamis 26:52
That’s fair enough. What else have you discovered that you can do? So one of the challenges that stroke survivors have is they feel like they’re a little bit out of control of situation, which makes sense. When you have a stroke, you realize that there’s some things you can do to take control of your recovery and influence it in a positive way. So you’re paying attention to your food. What other things you’re physically active, you’re doing as much as you possibly can to rehabilitate yourself. What other things have you taken responsibility for and are doing to support your recovery?

Dylan Alford 27:28
Well, now I’m a lot more aware with my emotions like when I’m feeling angry or I can’t turn it better.

Bill Gasiamis 27:53
Okay, so you’re more aware of your emotions, and you’re and you’re able to catch yourself out, and you’re able to adjust the situation, like change the way you’re reacting. What is it?

Dylan Alford 28:08
Well, also the medicine helps.

Bill Gasiamis 28:17
Combined, they both help.

Dylan Alford 28:20
Yeah, because before the medicine, I want to control my emotions, but sometimes I just couldn’t.

Bill Gasiamis 28:40
Yeah, well, you’re pretty normal in that way, everyone is there every so often.

Dylan Alford 28:49
Yeah.

Bill Gasiamis 28:49
And it’s not justifiable, but you have understandable reasons why you can lose your shit every so often. It makes sense, okay, but you still want to be aware of your behavior. Is it you still want to be better? Regardless of whether or not you’re gone through a tough time.

Dylan Alford 29:17
I would like to control it without medicine.

Bill Gasiamis 29:27
To control without medicine?

Dylan Alford 29:29
Yeah.

Bill Gasiamis 29:30
Well, that is, that’s a great thing to achieve, absolutely, if you worked on that and you got to that stage, that’s a great achievement, most people don’t manage to control their emotion, so curiosity, other than meeting me and me meeting you, how come you decided to reach out and jump on the podcast.

Dylan Alford 29:30
Well, actually when I first had my stroke, I watched really a lot of your podcast, and then help me feel like I wasn’t alone.

Bill Gasiamis 30:25
Yeah, okay, so you’re hoping that this interview again will be found by somebody else, and it will help them.

Dylan Alford 30:34
Maybe it’ll help them feel more like they’re not alone.

Bill Gasiamis 30:45
They’re not alone. And there’s other people that have been through this.

Dylan Alford 30:49
Yeah.

Bill Gasiamis 30:51
Duncan, I’ve noticed his improvement over the years as well, since he joined me.

Dylan Alford 30:58
He has improved so much from when he did the interview with you.

Bill Gasiamis 31:14
I haven’t spoken to him face to face for a little while, so as he improved in his talking and his abilities.

Dylan Alford 31:23
Me and him almost talk the same.

Bill Gasiamis 31:30
Okay, almost talk the same.

Dylan Alford 31:34
Yeah.

Daily Life and Rehabilitation

Bill Gasiamis 31:35
Okay, that’s so good. Duncan, I remember we were talking on the podcast interview that I did with Duncan. We were talking with the with his voice, automated voice, with his computer voice, which we prepared that interview so that he had the questions ahead of time, and then he typed the answers. And then, when we met for the podcast, I would ask him the question again, and he would respond with his computer voice.

Dylan Alford 32:09
Well, I was thinking about doing that myself, but then I thought “Wow, this is a good exercise for my speech.”

Bill Gasiamis 32:29
Yeah, absolutely.

Dylan Alford 32:32
Yeah.

Bill Gasiamis 32:36
Absolutely, it’s a good exercise for your speech. Do you normally have this length of conversation?

Dylan Alford 32:41
No. Usually I talk only for a minute or two and then I’m quiet.

Bill Gasiamis 33:01
So, is it fatiguing to talk for this period of time.

Dylan Alford 33:05
Well, if I didn’t have this, it would be.

Bill Gasiamis 33:16
That’s that device is just blowing me away. I just can’t wrap my head around how that device works. I need to look into it and understand it better. But I’m so good, I’m so good that a little device like that makes such a massive difference.

Dylan Alford 33:29
Well, it really helps me with my breath.

Bill Gasiamis 33:38
With your breathing.

Dylan Alford 33:38
Yeah, you remember how hard and tough, for the air to exhale, and just want a sip, you know, that was me too.

Bill Gasiamis 33:59
Okay, so the idea is to stop the air going through the nose.

Dylan Alford 34:04
Yeah, but the speech therapists told me.

Bill Gasiamis 34:11
Okay, your speech therapist told you. How often do you do speech therapy?

Dylan Alford 34:16
Well, right now, it’s on hold. But before I did it Monday to Friday.

Bill Gasiamis 34:32
Five days a week?

Dylan Alford 34:34
Yeah.

Bill Gasiamis 34:35
Okay, and would you what percentage, how much has your voice improved since the beginning of this situation?

Dylan Alford 34:46
I’m not, I’ve been in the beginning I couldn’t talk it or drink. I couldn’t even open my mouth. So to me now I’m so thankful.

Bill Gasiamis 35:14
You’re grateful. So you couldn’t even open your mouth. Was even a problem?

Dylan Alford 35:20
No.

Bill Gasiamis 35:23
So now you’re drinking safely, and you’re eating safely.

Dylan Alford 35:29
Yeah.

Bill Gasiamis 35:34
Are there any restrictions on what you will eat or not?

Dylan Alford 35:37
Nope, no. Well, even when I was on resource, I did my own thing. I just ask whatever I want even though I wasn’t allowed.

Bill Gasiamis 36:03
Okay, so even though you weren’t allowed, you just ate whatever you wanted. Okay, that’s dangerous. Did you have any close calls?

Dylan Alford 36:19
Man, one time I was choked on a grape and then had to call 911.

Bill Gasiamis 36:34
Choked on a grape. A grape is the most deadliest food in the planet, I feel like.

Dylan Alford 36:38
Yeah, well, now I know.

Bill Gasiamis 36:43
Now you know. No more grapes, or are you back on grapes? Can you eat grapes now?

Dylan Alford 36:50
No, I can’t.

Bill Gasiamis 36:54
Okay, so did that happen at home? Or did that happen at a hospital?

Dylan Alford 37:00
Happened at one of my rehab sessions.

Bill Gasiamis 37:04
Rehab Sessions. Wow, man, that’s risky.

Dylan Alford 37:11
Yeah.

Bill Gasiamis 37:14
Now you understand the reason why you weren’t allowed to eat certain foods.

Dylan Alford 37:17
Yeah.

Bill Gasiamis 37:17
Fair enough.

Dylan Alford 37:17
I was such like, whatever and I didn’t hear what happened, but now I understand why.

Bill Gasiamis 37:38
Now you yeah understand why. Fair enough. So, what else are you hoping to achieve? What are your goals for the next, say, 12 months.

Dylan Alford 37:50
Right now, I really want to walk with nobody. I walk with a walker but I am so slow.

Bill Gasiamis 38:14
You walk with a walker at the moment.

Dylan Alford 38:17
Yeah, but I am so slow.

Bill Gasiamis 38:23
Slow, okay.

Dylan Alford 38:25
So, I would like to walk more fast and normal.

Bill Gasiamis 38:35
More fast and more normal.

Dylan Alford 38:38
Well, and also my voice of course.

Bill Gasiamis 38:46
You want to improve your voice as well. So with your walking, for example, do you walk into the house and go into the bathroom or go into the kitchen? Is that how you get around the house? Walking?

Dylan Alford 38:59
Yeah, well, only if someone is here. When I’m alone I’m in my chair.

Bill Gasiamis 39:18
Make sure you don’t fall over without anyone being there to help?

Dylan Alford 39:22
Yeah, because I cannot help up my self.

Bill Gasiamis 39:32
If you fall over, you can’t get up. Yeah, have you had falls on your own?

Dylan Alford 39:39
Maybe.

Bill Gasiamis 39:43
Okay.

Dylan Alford 39:46
Well, nobody’s here know me by name.

Bill Gasiamis 39:53
Yep, do you have people who come into the house to support you during the day, or are you alone most of the day?

Dylan Alford 40:01
Well, I did, but right now we are waiting on a new care giver to start.

Bill Gasiamis 40:09
Okay, so you’re waiting for a new care giver to start, at the moment and the old carer finished up or couldn’t support it? Couldn’t do the role anymore? What happened?

Dylan Alford 40:37
There was once a rehab. So, now I have a new one.

Bill Gasiamis 40:39
Is it a massive inconvenience to not have somebody with you, dropping in to see you?

Dylan Alford 40:46
Yeah, because if someone is here the whole time, then I had practice by walking.

Bill Gasiamis 41:04
Use it as an opportunity to practice your walking?

Dylan Alford 41:06
Yeah, but when I’m alone, I was always in my chair. Not improving.

Bill Gasiamis 41:24
So the more people who are around, the more opportunity you have to be on your feet, focusing on getting better quicker, walking more normal, and then and achieving one of your goals, one of your aims.

Dylan Alford 41:40
Yeah, exactly.

Bill Gasiamis 41:42
Okay, and then other than that, so with your talking, you’re doing therapy. How come that’s on pause?

Dylan Alford 41:53
Well, they are just waiting for me to have my pump, so I can improve more.

Bill Gasiamis 42:11
To have your pump.

Dylan Alford 42:13
Yeah, because right now, my improvements are kinda on a plateau.

Bill Gasiamis 42:29
So, your improvements are kinda on a plateau at the moment.

Dylan Alford 42:31
Yeah. So, they wanna see how I do with my pump.

Bill Gasiamis 42:40
Okay, tell me about the pump again. What’s the pump?

Dylan Alford 42:43
It helps relieve my spasticity.

Bill Gasiamis 42:51
Okay, that pump. So is it a medication?

Dylan Alford 42:55
Yeah, and it goes in your spine.

Bill Gasiamis 43:01
I’m gonna just search that right now. I just want to understand a little bit about it. So it spasticity pump medication.

Dylan Alford 43:15
Yeah, best medication pump.

Baclofen Pump: Dylan’s Hope for Regaining Movement

Bill Gasiamis 43:30
Let’s see if I can find it. I’m trying to understand what. Okay, you mentioned that earlier, but I didn’t pick up on it. So it’s the Back Baclofen Pump.

Dylan Alford 43:44
Yeah.

Bill Gasiamis 43:44
Or the intrathecal baclofen pump. What do they make it so hard to to say.

Dylan Alford 43:53
Yeah, yeah.

Bill Gasiamis 43:54
So a spasticity pump, also known as a baclofen pump, is a medical device implanted under the skin to deliver medication called baclofen directly into the spinal fluid. It’s used to treat severe spasticity. It delivers a small, controlled dose of baclofen directly into that intrathecal space around the spinal cord. This allows medication to bypass the digestive system, reducing side effects, compared to taking baclofen orally.

Bill Gasiamis 44:28
It helps relax the muscles, reduce spasms and improve comfort and mobility. So when you have that from 1 to 10, if one is it doesn’t change anything. And 10, it changes a lot of things. How much does it change your spasticity? How much does it improve it?

Dylan Alford 44:51
Well, right now I’m talking. To other who has it and then tell me it helps you a lot.

Bill Gasiamis 45:08
A lot, heaps, okay.

Dylan Alford 45:11
And they were able to walk, run, drive on his.

Bill Gasiamis 45:21
Wow, okay, so it improves that dramatically where they’re able to improve their walking, driving and everything else.

Dylan Alford 45:30
Yeah, I mean obviously he has, he had been up, but whole fully not.

Bill Gasiamis 45:47
And have you had the baclofen pump before, or is this the first time?

Dylan Alford 45:51
The first time.

Bill Gasiamis 45:54
Okay, so it’s all new to you. You’re going to learn about how it’s going to help you. And then one, once you have that set up, then you’ll be able to determine how much more activity you can do?

Dylan Alford 46:09
I have to rehab again.

Bill Gasiamis 46:17
Then you can go back to rehab. Okay, so it’s a very important step.

Dylan Alford 46:28
Yeah.

Bill Gasiamis 46:28
Okay, I see and your wife. Does she work during the day?

Bill Gasiamis 46:34
Yeah.

Bill Gasiamis 46:38
I was gonna say, how many hours a day is she away from the house?

Dylan Alford 46:47
She makes her own schedule, so a lot of time she was from home.

Not Alone: How the Podcast Helped Dylan Through Recovery

Bill Gasiamis 47:01
She makes her own schedule, so she can drop in and check in “Okay, goodbye.” excellent. So, what else should we discuss? What else did you have something that you wanted to share or talk about?

Dylan Alford 47:25
Well, I would just wanna say, I want many of your episodes. When I was in the hospital, it helped me a lot.

Bill Gasiamis 47:48
I’m so glad that it helped you, man, I am so glad that my episodes made it possible for you to find Clodagh and Duncan make you feel like you’re not alone, that somebody understands you and encourages you. Your hope, encourages you to keep going after recovery like they did.

Dylan Alford 48:07
Yeah.

Bill Gasiamis 48:10
Yeah, fantastic, man.

Dylan Alford 48:10
They help me a lot.

Bill Gasiamis 48:17
I love hearing that. That’s the whole reason why I started the podcast was to find people to help each other so that we can connect, so that we know we’re not alone. And in 2012, of when I went through my three brain bleeds, there was nothing around that I could find or connect with or do that was making me feel the way that I needed to feel, like I wasn’t alone, and there was other people going through what I was going through.

Bill Gasiamis 48:47
And I started the podcast, and it changed everything for me, and then I didn’t realize that it was changing a lot of things for other people as well, which was just a bonus.

Dylan Alford 48:58
I remember when I had that, I’m lost in, but I still couldn’t talk, I was just lay in bed watching the different episodes.

Bill Gasiamis 49:22
I’m so glad, man.

Dylan Alford 49:26
Yeah.

Bill Gasiamis 49:28
Well, I really appreciate you reaching out, connecting, following me, listening to my episodes. I love that you are still passionate about your recovery and finding solutions to help you get better, and thank you for being my guest. Man, I really appreciate it.

Dylan Alford 49:48
Thank you as well, for having me.

Bill Gasiamis 49:52
Well, that’s it for another episode of the Recovery After Stroke podcast. Dylan’s story doesn’t have any ending yet. It’s a journey of small, gritty winds, clearer word, a steadier step, a deeper breath. I’d love to hear what stayed with you from this episode, what part of Dylan’s journey spoke to you and your experience.

Bill Gasiamis 50:15
Let’s keep this space one way 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 is for anyone looking to find meaning and momentum after stroke, you’ll find stories, tools and circuit breakers to help you shift. Check it out at recoveryafterstroke.com/book, if Dylan’s story moved you. Please share this episode. Someone else may need it today, and remember, slow progress is still progress. See you next time.

Intro 50:47
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 51:17
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 51:42
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 52:09
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 Some Days I Break Down: Dylan on Recovery from Locked-In Syndrome appeared first on Recovery After Stroke.

Recovery of Brain Hemorrhage: What You Need to Know About Healing, Hope, and Possibility

The recovery of brain hemorrhage is one of the most misunderstood and under-supported journeys in stroke care. For many survivors, the moment of hemorrhage comes without warning; one minute, life is normal, and the next, everything has changed. What follows can be months or even years of physical, emotional, and mental rehabilitation. And no two journeys are alike.

Whether you’re early in your recovery or years down the road, this post offers insight into the multifaceted path of healing after a brain hemorrhage, from clinical interventions to emotional breakthroughs, and everything in between.

What Is a Brain Hemorrhage?

A brain hemorrhage is a type of stroke caused by bleeding in or around the brain. This bleeding creates pressure that can damage brain tissue, interrupt neural connections, and affect functions like speech, movement, vision, memory, and emotional regulation.

Recovery is possible, but it takes time, patience, and often, creativity.

Beyond the Hospital: What Recovery Really Involves

Once the initial emergency is managed, survivors often discover that recovery is far more complex than anyone explained. It’s not just about regaining movement, it’s about rebuilding life. The recovery of brain hemorrhage involves:

• Physical rehabilitation: Learning to walk, talk, or use affected limbs again through physiotherapy and occupational therapy.
• Emotional healing: Managing trauma, identity shifts, grief, and isolation that often follow stroke.
• Cognitive training: Rebuilding memory, focus, speech, and executive functioning.
• Lifestyle changes: Nutrition, sleep, exercise, and stress management play a big role in reducing brain inflammation and supporting neuroplasticity.

Exploring Treatment Options

Some survivors pursue traditional rehabilitation pathways, while others explore experimental or complementary approaches. Commonly explored treatments and supports include:

• Hyperbaric Oxygen Therapy (HBOT): May support brain healing by increasing oxygen delivery to damaged tissues.
• Transcranial Magnetic Stimulation (TMS): A non-invasive therapy that uses magnetic fields to stimulate neural activity in targeted brain regions.
• Etanercept (Perispinal): An experimental anti-inflammatory injection not widely available, but showing promise for some with post-stroke inflammation.
• Botox for spasticity: Can offer temporary relief from muscle stiffness, though results vary.
• Acupuncture: May provide pain relief and reduce stress or inflammation.
• Dietary changes: Many survivors adopt anti-inflammatory or plant-based diets to support brain and body recovery.
• Psychological support and coaching: Holistic recovery often depends on addressing mindset, inner dialogue, and long-held emotional patterns.

Each of these options comes with its own risks, costs, and potential rewards. Recovery is rarely about just one solution, it’s about layering tools that work for you.

The Role of Emotional Recovery

The emotional impact of a brain hemorrhage is often overlooked, but it’s just as real as the physical symptoms. Survivors frequently report grief, fear, frustration, and even moments of hopelessness. Others describe breakthroughs that came only after deep inner work through therapy, coaching, or spiritual reflection.

The truth is: healing happens on multiple levels.

Changing the way we speak about ourselves (“I’m not disabled, I’m recovering”) and processing emotional wounds from the past can have a profound effect on how the body responds to rehabilitation.

What About the Plateau?

One of the most discouraging myths in stroke recovery is the so-called “plateau”, the idea that progress stops after 6–12 months. But that’s not how the brain works.

Recovery can, and does, continue for years. What may look like a plateau is often the body recalibrating, consolidating progress, or responding to fatigue. In some cases, significant gains occur after the first year. Neuroplasticity doesn’t expire.

The key is to stay engaged, curious, and supported.

You’re Not Alone in This

The recovery of brain hemorrhage is not a solo mission. Whether you’re still in the hospital or adjusting to life months or years after your stroke, know this: there are communities, conversations, and tools out there to help you heal.

At Recovery After Stroke, we’ve created a space where hundreds of survivors and experts share their stories, strategies, and support. You can find full-length interviews on our YouTube channel or connect through our growing community of stroke thrivers.

Final Thoughts: Recovery Is Still Happening

Recovery doesn’t always look like it used to. Maybe your hand still won’t open, or your walk isn’t perfect. But if you’re choosing better food, showing up to rehab, or speaking to yourself with more compassion, you’re recovering.

Progress isn’t always visible, but it’s real. Your story is still unfolding.

Recovery of Brain Hemorrhage: Jason’s Journey Through Pain, Innovation, and Growth

Recovery of brain hemorrhage from Jason’s perspective, treatments, setbacks, and mindset shifts that shaped his healing journey.

Neurologic Recovery Clinics
Hyperbaric Oxygen Therapy (HBOT)
Emma Thompson: Holistic Life Coach
Andy Husler

Highlights:

00:00 Jason’s Introduction and Initial Conditions
03:45 The Day of the Stroke and Initial Reactions
10:40 Treatments and Their Impact
15:51 Trading Life, Family, and Recovery After a Brain Hemorrhage
22:51 Hope, Hype, and Unanswered Questions
32:19 Tangible Relief from Spasticity
40:02 Family Life and Emotional Recovery
56:35 Challenges and Future Plans
1:01:51 Final Thoughts and Advice
1:05:26 Navigating Plateaus in Stroke Recovery
1:13:50 The Podcast That Heals: Bill & Jason on Connection, Recovery, and Regret

Transcript:

Jason’s Introduction and Initial Conditions

Bill Gasiamis 0:00
Jason was 56 driving to dinner in Dubai when his hand suddenly slipped off the steering wheel, and moments later, his foot slammed down on the accelerator. That’s how his stroke started. What followed was a brain hemorrhage, partial paralysis and a recovery journey that took him across countries, through experimental treatments and into some deeply emotional territory. But here’s the part that might surprise you, it wasn’t the cutting-edge drug or the therapy machine that changed everything. Jason says that the biggest breakthrough came from something far more personal.

Bill Gasiamis 0:39
Hello everyone, and welcome to another episode of the recovery after stroke podcast. I am so glad you’re here. Whether you’re a stroke survivor, a caregiver or someone just looking for hope after a brain injury, you’re in the right place. More and more people are finding this podcast while still in hospital, sometimes just days after being diagnosed. That’s why I started this to shorten the time between stroke and connection. And if you’re someone who believes in the power of shared stories to make recovery feel less lonely and more possible.

Bill Gasiamis 1:13
Please consider supporting the show at patreon.com/recoveryafterstroke every contribution helps keep this mission alive. Now let me introduce you to Jason, a brain hemorrhage survivor who tried nearly everything to get his life back. Etanercept, TMS, HBot, acupuncture, Botox, dye changes, and more. But what you’re about to hear goes beyond rehab and into something much deeper. This is the real work of recovery, the mental, emotional and human side. Let’s dive in. Jason Hellowell, welcome to the podcast.

Jason Hellowell 1:49
Nice to see you. Nice good morning.

Bill Gasiamis 1:52
Thank you for being here. I really appreciate it. Tell me what was like, What was life like for you before the stroke?

Jason Hellowell 2:05
I was a very active person. I rode motorcycles, I water skied, I skied. I have a boat, living life at its best without question. Yeah, and then things change. How old were you within split seconds, I was 56 when it happened.

Bill Gasiamis 2:25
Tell me about that day. What was it like leading up to the strike? Did you notice anything? And then what happened?

Jason Hellowell 2:34
You know, in hindsight, when you look back after it happens, you you kind of think back, was there anything that gave me a sign that potentially would say, Okay, you’re about to have this brain hemorrhage. And in hindsight, yes, there may be a couple of things that happened, among others, waking up in the morning and having a very dizzy spill spell, just bang, whoa. That’s dizziness, right? And then it was gone. And being a typical man bloke syndrome, I just went “Oh, that’s nothing.” Just waking up. You know, I’m 56 nothing.

Jason Hellowell 3:07
And then on the ninth, sixth of September 2023 I was driving along the sheik Zayed Road, which is the main artery Road in Dubai, here where I live, and my hand fell off the steering wheel of the car, and my right hand just went and dropped off the steering wheel. Luckily, I pulled into the side, I put the car into Park, because then two minutes later, my foot did the same, but landed on the accelerator. So then it was, you know, the engine was revving and it was going absolutely Ah, so luckily I’d stopped the car, because if I’d have just carried on driving my left hand.

The Day of the Stroke and Initial Reactions

Jason Hellowell 3:45
I would have driven into whatever right Anyways, my wife was with me. Luckily, she found super strength to get me out of the car, into the back of the car, and off we went to hospital, and there you go. Where were you heading? We were on the way out for dinner, regular day to go in for dinner. No symbols, no pain, no signs, no pains, no headaches, no no nothing. I was aware that I had a blood pressure, and had had for some time, and I had been to the doctors and the doctors that all told me there is blood pressure, but none of the only one.

Jason Hellowell 4:23
I look now and find an email with a prescription for blood pressure tablets in 2000 in 2020, I think it was. And for some reason, I missed that email, and nobody followed up. So it was a prescription by email that I never saw anyway. But then you’ve gone to the doctor a few times afterwards, and you’ve been told blood pressure, nobody has gone boom, let’s just take you and give you a blood pressure tablet, which I’m a little furious about. But anyways, as everybody tells you, you can’t cry over spilled milk. You’ve got to face with the fake facts of what it is. And here I am now.

Bill Gasiamis 4:59
What were your face? First thoughts about what’s happening to your hand while you’re driving, and what happened to your leg

Jason Hellowell 5:06
Afterwards? Well, first of all, when my hand fell off the steering wheel, I said, I said to my wife, there’s something wrong with the steering wheel of the car. I don’t know what my reaction was. It felt like the steering was loose. So I blamed everything else. I didn’t even think about it. And even when I was in the back of the car, though, I did have seconds or moments where I thought, this is the end of it, right? Here’s the end. I did have that thought.

Jason Hellowell 5:34
I continued to be very chilled, and just thought, We’ll fix this. You know, it’s, it’s just something that you go to the doctors, they’ll give you something, you’ll be fixed. And I kind of still think that, but now you’re kind of more aware of what it really is and where I am. Now we’re just under two years from the happens, of it happening and fighting on the path, you know, of recovery, basically.

Bill Gasiamis 6:02
How long did it take to get you to the hospital from that particular location where you guys stopped the car?

Jason Hellowell 6:09
Less than half an hour. Okay, so we were very quickly to the hospital, but we had to go to another hospital to be treated. So I went to the clinic, actually, where I’d been six months before, and where I was told that I had high blood pressure too late then, but and then we took we were sent in an ambulance to a neurospinal hospital where they could do the neuro where I was told to wait for 72 hours to let the blood pressure go down. They had done a scan. They could see the bleed.

Jason Hellowell 6:44
And then afterwards, they did an operation where they cut in and they took out the blood, the excessive blood that was there, to give a better chance of recovery. And thankfully, because prior to the opening and the removal of the hematoman hematoma, my speech was pretty bad, but this the minute that blood was removed, my speech came back very weakly, but did come back so I didn’t lose speech.

Bill Gasiamis 7:15
Yeah. So the blood like me when I had the bleed in my head the first time it It impacted my left side, feeling sensation, all that kind of stuff. Everything was numb, like you’ve like, you’ve sat on your foot, your foot’s gone numb, then you’ve gone to step on it. Yeah, my entire left side was like that. But you know, you wouldn’t really feel like, you wouldn’t really feel like I didn’t know that it was associated to my head. Anyway, when the second bleed happened six weeks later, there was more blood about the size of a golf ball in my head. So that took offline.

Bill Gasiamis 7:53
That took offline the memory, you know, speech, typing, concentration, focus, driving, you know, lots of things went away, and then as the blood decreased in size over about a year and a half, because they never took it out initially, then what happened was all the functions started to come back, and I, I started to feel normal, and everything started to go back to like it was before, but the blood vessel was still faulty. It was still bleeding, micro bleeds. They called it micro bleeds. And then later on, when it bled for the third time, then I blacked out like everything went, pretty dramatic.

Bill Gasiamis 8:34
No, so I beg your pardon, the second time everything went and I blacked out. The third time it felt like sunburn. I was sunburned. That’s all I felt. And I went to the hospital said, right, so it feels like it’s burning. I have definitely have having another bleed, because this is my history, etc. So what your what your brain, what happened to your brain was the blood is just compressing on neurons and cells and just make them go offline. It’s not damaging. Yeah, I make them go off sleepy. The part that’s damaged is in a different location.

Bill Gasiamis 9:09
It’s at the at the epicenter of the blade, for example, and that’s the part of the blood, the part of the brain that perhaps you could say died or stopped working, and then the rest of it around there’s just gone offline and just waiting for an intervention so that it can come back online. Yeah. So when you were hospital, how long were you in there for?

Jason Hellowell 9:37
I was in hospital for a month, yeah. So we were doing, or obviously I was very, very disabled, you know, I was fully paralyzed right side. And quite quickly after the operation, I was beginning to do physiotherapy, but very difficult, but I managed to get. Up and move around. But then I was about a few weeks once I came home, was wheelchair bound. And then, you know, you just start training and hoping and the walking. I mean much as it looks, you know, I limp and I struggle and balance is pretty bad.

Jason Hellowell 10:17
My biggest challenge is the arm. I have very little use of the arm. And, you know, I can see your hand does the opening and closing. I just want to have a little bit of opening and closing to start to train that, you know, because I do believe that you can train it back, but I need that connection to begin to be able to train it. And at the moment, that hand doesn’t react, unfortunately.

Recovery of Brain Hemorrhage: Treatments and Their Impact

Bill Gasiamis 10:40
Let’s take a moment to pause and reflect on what Jason’s been sharing from paralysis on the right side of his body to trying nearly every therapy he could. Jason’s story is one of relentless effort and emotional depth, and while he’s seen progress from experimental treatments like etanercept and TMS, what stands out most is his emotional recovery, learning to speak kindly to himself, releasing long held pain and discovering strength he didn’t know he had. If this podcast is helping you make sense of your own Recovery After Stroke.

Bill Gasiamis 11:12
One way you can support it is simply by listening through the ads. It’s a small gesture, but it helps us keep producing and sharing stories like Jason’s. If you’d like to go further and help bring these conversations to people who are just starting their recovery, sometimes even in their hospital beds, consider joining us on Patreon, at patreon.com/recoveryafterstroke. Your support makes this possible. Now let’s get back to Jason’s story and hear what he’s discovering about healing body, brain and heart.

Jason Hellowell 11:45
I can grip, I can grip, but I can’t open.

Bill Gasiamis 11:50
Yeah. Is it painful?

Jason Hellowell 11:54
Do you know what the pain went away when I did that? 10 recept. Okay, so you know, as I wrote to you on the thing, I’ve tried most of the solutions that you, you’ve written, talked about on your podcast, I’ve done all of them. Actually, the only one I haven’t tried yet is stem cell treatment, which I may go towards in a while, but I don’t know. I’ve looked into the guy in America, this guy Tom, who’s done the, who’s created the drug, you know, I’d be interested to hear that. Yeah, so the pain mostly went when I had a 10 receptor. Okay, we’ll talk about before that. It was like a it was a glowing pain. It’s just a continuous and in fact, having had it for, let’s say 16, 15 months, by the time I went for a 10 recept.

Jason Hellowell 12:47
I didn’t even realize I had the pain until it was gone. You know, your body gets so used to it. You get so used to being in pain all the time that until somebody injects you, and all of a sudden, I when I was lying in the chair, felt like somebody, what you know when they talk about somebody walks over your grave and you go cold, I had that down my right hand side, and the pain was gone. It’s come back a little bit. In certain times when my fist is tight like this, I get pain, but otherwise, I’m not in that much pain, to be honest with you.

Bill Gasiamis 13:24
Okay, so how about your leg? What sort of situation is your leg in? Are you fully mobile?

Jason Hellowell 13:33
Yeah, I can get up and walk around. You know? I can move around. I walk like this morning, I went out for a walk, and I walk a kilometer. It’s not the prettiest walk walk. It’s my arm. My leg swings out a little bit, but I can use it to get around, like you said before, a little bit of imbalance. So the risk of fall is there. I have spasticity in my ankle, spasticity everywhere, but my foot tends to kick inwards, which makes a little risk of standing wrongly and then falling.

Bill Gasiamis 14:06
Yeah. And if I recall correctly, that swing that your leg has got is from the knee, it kind of hasn’t got that real focused swing so that it goes backwards and forwards. It kind of just goes wherever it wants for a little bit.

Jason Hellowell 14:23
That’s right, exactly. So from the knee down, I have less control than I do at the hip. And actually the hip is interesting, because I have, I have forward and backward movement on the hip, but I have very little stability on the diagonal movement, so the leg tends to go out and swing around that, you know, it’s kind of like that, and then you land on your foot and use it as a support to move forward in the next one.

Jason Hellowell 14:47
Yeah. But again, that’s a training thing. I think we can train that pattern and get back to normality by building strength. I believe if I can get my leg strength fully back, we can begin to get there. Yeah. I. I need my hand. You know, I need to ride my motorcycle. Priorities, that motivation?

Bill Gasiamis 15:07
Yeah, you might have to get a three-wheeler and reconfigure the grips, or get an automatic one.

Jason Hellowell 15:14
Yeah, maybe. But I need the left-hand throttle and balance would be incorrect. It’s just, I keep the motorcycle because it’s a motivation to get better. Yeah, and I think where there’s a will, there’s a way, is my saying, right?

Bill Gasiamis 15:27
Yeah, why not? Like, I don’t see an issue with that as well, be great thing to try and and redo, and then and also adapt if you can’t get there, however many years down the track you decide I’m not. I might not get there. Well, then just adapt it and find another way to do it. Of course. Yes, if it’s a three wheeler, it’s a three wheeler.

Jason Hellowell 15:48
Exactly. It’s no issue. Yeah.

Trading Life, Family, and Recovery of Brain Hemorrhage

Bill Gasiamis 15:51
So yeah, just before we move into all the things that you’ve tried, I know you’ve tried a few things. I love that, because we’ll talk about them all. So yeah, what’s family life like you? Your wife? Who else? Anyone else around? What kind of work were you doing? How busy are you? What things were you up to?

Jason Hellowell 16:11
I’m kind of lucky that I work for myself, and a lot of what I do is networked or, you know, WhatsApp or zoom, and I do go out and meet people occasionally. I have a trading company here in Dubai where we import and export certain things. So that’s that’s okay, not obviously, there was a long period of time where I wasn’t even sharp enough in my head to do things. But I’m back to, you know, I’m on a path of recovery, and I’m good on my way there, right, with some restrictions. Family life. I live here with my wife, my two kids have grown up.

Jason Hellowell 16:44
They’re both, you know, in their 20s, living in Copenhagen, hence why I went to Copenhagen for the Aten recept and, yeah, you know, try my best in the situation we have. We gotta take the best you can, because I’m still here, right? Yeah, as you well know, brain hemorrhages are one of those ones where the chance of living are very minimal.

Bill Gasiamis 17:03
Apparently, so less common but more fatal.

Jason Hellowell 17:07
Correct. From what I’ve read, 5% of people who have a brain hemorrhage survive.

Bill Gasiamis 17:13
Right, wow, that’s dramatic.

Jason Hellowell 17:16
We’re the lucky ones.

Bill Gasiamis 17:18
Mate, I’m very lucky. I’m blessed. I didn’t know that there were the numbers were that bad against Yeah, it is bad images, right? Okay, yeah. So how did you find out about etanercept?

Jason Hellowell 17:36
I think it was just online, you know, or very possibly, I’ll tell you what it was. I have a friend in Denmark who has another friend who had had a stroke, ischemic stroke, a little older than me, and he had heard about this being given in Denmark. And so then I started to research on it, because this friend sent me the information, and I watched all the videos on the website and so on and so forth. And then I spoke with these people in Denmark.

Jason Hellowell 18:06
And then we went and did it. You know, it was my opinion, my attitude was, what have I got to lose once you’ve understood that there is no risk with it, it’s either going to work or it’s not going to work, or it’s going to work a little bit, and maybe not totally, but there’s, there’s more benefits and more, you know, chances of doing something than not.

Bill Gasiamis 18:29
The doctors in Denmark, are they affiliated at all, in any way with Dr. Tobernick from Florida?

Jason Hellowell 18:35
Yes, they are the licensed providers of a 10 recept perist final, attend recept following the, what can we say, the guidelines of Dr. Tobernick.

Bill Gasiamis 18:46
The method.

Jason Hellowell 18:48
Yes.

Bill Gasiamis 18:49
Is there any, did you do any? Did you do any preliminary test examinations to determine whether you’re a candidate or not? Like, what was that procedure like, beforehand.

Jason Hellowell 19:02
Yes, I had to do blood tests to test if my blood or, sorry, if I’d ever had tuberculosis, and come back with the tests to show them that my bloods were good to receive etanose. And then when we got to the clinic, I went through a bunch of tests, you know, load questions and cognitivity, how you walk, just to give a benchmark, so that when you’d had the injection, they could check how you were doing after having had the injection.

Bill Gasiamis 19:34
And what’s that like for you? You fly in, you settle in in your family home with your with your kids, or whomever, and then head down do the injection. What was that like that whole day?

Jason Hellowell 19:47
So my kids live there, but we stayed in a hotel, so we flew into Copenhagen, checked into the hotel, and then the next day, my daughter drove us out to where the clinic was, and we. Sat down and did the test with Doc, Mister Michael, and yeah, had the first injection. And the first injection, I definitely felt a difference, like within four minutes, I told you, this cold feeling through the body, pain was gone. The main benefit was my voice. I have depth to my voice. You know, I sound powerful in my voice. Before it was very weak it was, I was struggling to get the words out.

Jason Hellowell 20:28
And I would trip over words. You know, I would have to pause and count and think and, you know, my brain was working to try and get all these words into place. Now it’s just there. So I’m very grateful for that first injection was like that. I thought maybe that there was some mobility benefits. I’m not sure if that’s a placebo effect. And my desire willpower, wanting to be better, because injection number two came, and now there was not really any big change after injection number two. And the question is, now, would I go back in July and do the third one? Why July?

Jason Hellowell 21:10
Because you’ve gotta wait two months or something for the third one. You do two within a 10 day period, so first one and then 10 days later, you do the second one. If the first one has given you effect, if you didn’t have effect on the first one, you may say, okay, it didn’t do anything. There was not enough inflammation to be able to get a result. I wouldn’t do number two, but I was like, I’ll try anything, right? So I’ll do it, and maybe I’ll do the same with number three, but I don’t know, given that there has been no drastic change since number two, I’m not so sure.

Bill Gasiamis 21:44
Yeah, fair enough. What is the cost per injection?

Jason Hellowell 21:51
I’m not sure if I can talk about that, because I think they differ from different places, so I don’t want to mislead people, but the first injection was 9000 euros, and I believe in the United States, it’s $9,000 for an injection, I believe. But again, it may differ per injection. I think the first one, second, 1/3, one have different prices in different places, but the average price is about $9,000 per injection.

Bill Gasiamis 22:16
Okay, or 9000 euros somewhere there. Yeah, they’re around. Yeah, there seems to be a really interesting conversation happening around thetacept. So in Australia, you can’t actually access ataricept unless it’s in a clinical trial, which is for a very small amount of people, and that’s just to determine its efficacy, because nobody’s doing clinical trials for a tonic atanacep to see whether it is efficacious for people who have had a neurological injury. So Right? It’s extremely difficult to find anyone to talk about it, etcetera.

Hope, Hype, and Unanswered Questions

Bill Gasiamis 22:51
Now, I recently received an email from Doctor Toby’s office telling me that they wanted to refute some of the findings of a trial that was called the pesto trial, that was that was done about a year and a half ago, and the results haven’t been released yet after a year that the study has finished, And I asked Dr Tober Nick’s office for an interview, and I they refused. I couldn’t get an interview with him, so I also tried to get an interview with the researchers on the pesto trial, the trial that concluded in mid 2420 24 which the results were supposed to be out by now.

Bill Gasiamis 23:41
And they also haven’t been able to confirm whether or not I’ll be able to get an interview with anybody. So there’s this whole kind of industry of keeping information close to their chest, rather than telling people you know what’s going on with this product, or whether or not it’s suitable how to access it and all this type of stuff. And I don’t understand exactly why.

Jason Hellowell 24:05
No, neither do I.

Bill Gasiamis 24:08
One of the challenges, then, is managing all of the comments on YouTube. Which is it, was it worked for me? It was great, or this is a scam. This is where we’re sitting. From your experience, I know that you had a positive outcome of sorts, but your hand didn’t, perhaps have any positive outcome. No, what is your sense of the entire of this entire thing? Like I know you, you kind of thought it can’t harm so I might as well give it a try.

Bill Gasiamis 24:46
But what’s the sense now that you’ve done it about this whole etanercept thing, miracle drug for some people, complete, demonic, ridiculous, terrible thing for others.

Jason Hellowell 25:00
Yeah, I think you know my reckoning is that the sooner you can do it, the better you know I was beyond 12 months. So I can’t remember. It was 16, 17 months after my stroke that it happened. So therefore has the inflammation reduced. And as we both know, every single stroke is different. Every single person’s reaction to the stroke is different. You know, how, how much you affected whatever, I’ve watched all the videos, I’ve listened all the interviews online. You know, it’s working for some people.

Jason Hellowell 25:39
So my belief I’m very pro-etanercept, as I said, I’ll try it if it works positive, if it doesn’t, I’ve not lost anything. But given that, it has worked for many people, and I can tell you, for me, it has given me clarity of brain. It has given me better speech and a pain relief to a degree that is unexplainable. Mobility. You know, my stroke happened on the left side of my brain in what’s called the motor strip.

Jason Hellowell 26:15
So my mobility is very affected. Is it 10 recept going to fix that? You know, I don’t know what I would be interested to know, because they say you can do these three injections, I’d be like, what if I took six injections? Would that have any bigger benefits? Is there a chance if I took more of it, that I would have a better effect? I don’t know. I would love to know those kind of things, and I will be following up to find out that.

Bill Gasiamis 26:42
Yeah, the good questions to ask, I feel like, what a tenner step does is it impacts in a positive way, inflammation, as opposed to brain damage. So once the brain is damaged, it’s damaged, it’s offline. You’re not getting that part back. Yeah, and if you have a lot of that, well, then your deficits are huge. But with regards to the other parts where there’s inflammation, and it’s taken some of the brain offline, just like the blood when it was touching on the brain cells. Yeah, that is, I think, what it impacts positively by reducing the the inflammation there.

Bill Gasiamis 27:15
Removing the chemical situation that occurs, and then allowing that part of the brain to come back online, and it does it instantly. The question is, is also, with regards to inflammation, you can re inflame the brain, poor diet, say you’re smoking and drinking, you can re inflame the brain, and then I imagine, yeah, undo the positive work that etanercept has done, have you? Yeah, give us a bit of an understanding of like, how you look after your body and brain these days. What do you do?

Jason Hellowell 27:50
You know, my wife has become my personal nutritionist, and she’s amazing. So I eat, eat healthily. I eat, I would say, 80% vegan, no dairy. You know, I do eat meat, and I do do, like, I say 80% I exercise every day. I’m pretty much in the gym every day. I still do physiotherapy, 345, times a week. Yeah, so a lot has changed, and it’s all focused on the path of recovery.

Bill Gasiamis 28:23
Yeah, so in regards to a vegan diet, I wouldn’t recommend a strict vegan diet, but I’m not a I’m not a doctor, so don’t take any of my recommendations or comments as advice, but but also, adding protein is really important to help the brain, so the fact that you’re having a high vegetable diet that includes protein and doesn’t include dairy, what I’m saying is, like, that’s a very anti inflammatory diet most of the time, correct, especially if you’re not overdoing it with lentils and things that have a lot of inflammatory kind of situations.

Bill Gasiamis 28:59
You know, people can some people can bloat if they lentils, beans and all that kind of stuff that tends to also impact the brain negatively. Okay, so you’ve tried some other things as well as etanercept. What else have you tried?

Jason Hellowell 29:15
So, pretty much, soon after I came from hospital, I did hyperbaric oxygen chamber, which I did three sessions. I did 30 sessions of hyperbaric oxygen chamber. Again, I had read that, you know, if you can increase the oxygen and you go to hyperbaric, it’s very good for healing. So will it heal the wound in the brain and so on. And can I give you a specific Yes, it did something. No, is it a part of my healing? Is it a part of where I am? It’s very possibly. You know, the more I read about it, the more I think I would go back and do it again. You know, it’s very good for you anyway.

Jason Hellowell 29:56
So there’s nothing to lose by doing it, but there’s no specific. I felt this different because of it, whereas with the tan receptor was a definite, I felt this, there we go.

Bill Gasiamis 30:10
Did you do the 10 seconds or the hyperbaric first?

Jason Hellowell 30:14
Hyperbaric first? Then I did so. I did hyperbaric first 30 sessions. I then went to Switzerland, to a particular clinic in Switzerland where they did TMS, transcranial micro magnetic stimulation. There I only did 10 sessions. I’ve since come to I’ve since met a doctor here in Dubai who does it too, and they want to do me 30 sessions, which I will possibly, you know, I’m likely to begin soon.

Bill Gasiamis 30:44
Okay, tell me about that. Yeah, that’s supposed to do.

Jason Hellowell 30:54
I think the whole idea is, so it’s a plate that comes to your head here, and you just feel this like a crackling. It’s not painful. It isn’t. It’s a little weird. If you imagine two electric things going together and you see that little flashing light that goes across it, and it’s like, if you put your finger between it, that’s the feeling that you have on your head kind of thing. And it’s supposed to, you know, if you go on to chat GPT and say, what, what are the best things I can do to recover mobility of my right arm having suffered a intercerebral hematoma, TMS is one of the top things that comes up.

Jason Hellowell 31:34
And you know whether you believe in AI or not, you know, AI is a source of information second to none. And so when you go in and throw these questions into chat GPT, it comes up with some fabulous responses, yeah. And so I, you know, I’m following those kind of things really.

Bill Gasiamis 31:52
Yeah. So TMS and ChatGPT. I mean, ChatGPT is just a search engine, and it’s really good at, of course, being really detailed search engine, and sometimes it’s not accurate. So if there is, so if there is some information there about TMS, it’s only because it’s starting to be discussed regularly, and there’s stuff on the internet about it, because church apt is trained on the entire internet, so that’s where it’s getting the information from.

Recovery of Brain Hemorrhage And Tangible Relief from Spasticity

Bill Gasiamis 32:19
So, I type in TMS to ChatGPT, which I just did, I said “What does TMS do?” It says it delivers magnetic pulses through a coil placed against the scalp. These pulses target specific areas of the brain, often the prefrontal cortex, to influence neural activity. Okay, great. Is that how it was described to you? Again, do you need to qualify for that? Do they need to assist you? How do you just? How do you do this?

Jason Hellowell 32:55
Well, I was in a particular clinic in Switzerland where it’s a neuro specialist, neuro rehabilitation clinic, and that was a part of their recovery suggestions to me. And yeah, I just it was a part of my process of recovery. You know that that was one of the things. And I have to say, the result of that was also tangible. It was a huge reduction in spasticity in my shoulder. I had frozen shoulder for a good six or seven months where I could not move at all. It was so painful. It was agonizing.

Jason Hellowell 33:31
And TMS definitely, relieved the spasticity. It has not gone fully, but that’s that is the reason that I will go back and try again to see if I keep going with TMS. Can I reduce more spasticity, and can I get to a level where I can train my hand more?

Bill Gasiamis 33:50
Did you notice it gradually getting better? Or did one day again you woke up and thought “Oh, my God, that’s gone.”

Jason Hellowell 33:57
Well, we did 10 sessions, and I did a lot of electro stimulation and training immediately after having had the TMS. And I would say it was a gradual feeling of reduction in spasticity, okay? And it was primarily the reduction in spasticity. And as you may know, I don’t know if you ever suffered spasticity, but the spasticity is a big blocker from being for being able to gain recovery, because the spasticity freezes you up so you can’t train you can’t build muscles.

Jason Hellowell 34:31
You can’t teach yourself, you know, because, okay, that part of my brain is dead, but Neuroplasticity continues, so you can teach yourself to use those parts of your body by using another part of your brain. Yes, if you work hard.

Bill Gasiamis 34:46
Yes, if, and I believe that spasticity released and gave you access to those muscles, correct? Yeah, hence Botox and hence other things to try and relieve spasticity in people’s arms, legs, shoulders. And all that kind of stuff. I know what you mean. Okay, so I did do Botox as well. Okay, we’ll talk about that as well then. So your your TMS, 10 sessions over what period of time?

Jason Hellowell 35:16
During a two to three week period.

Bill Gasiamis 35:19
Okay, how long do they sessions go for 10 minutes.

Jason Hellowell 35:25
Yeah, you just, you go into the room for 10 minutes, and then off you go to the rest of your rehab.

Bill Gasiamis 35:33
Does it make you feel strange, different at the time? Do you notice anything?

Jason Hellowell 35:38
No, you sit there. I mean, initially you’re a little bit apprehensive to this device going to head, but once you’ve felt the feeling, you go in and sit down and let it happen. You know, in hindsight, I would want to do that, you know, having been to visit this doctor in Dubai who would now like to do 30 sessions, I would like, you know, ideally, if it wasn’t so expensive, give me 30, you know, let me keep going. Okay, I’m very much. I’ll try anything.

Bill Gasiamis 36:07
I love it, I love it. Jason, so, hyperbaric first, TMS second, a tennership Third, yeah, and then yeah. What was the other one I mentioned you just, yeah, me too. You just mentioned that, just then.

Jason Hellowell 36:25
Yeah, Botox, you know, there’s a lot going on. So I did Botox. Probably I did the Botox before the TMS, actually. So I came out of hospital, I did hyperbaric oxygen, and then I did Botox, which was injected with ultrasound so that they could sense the movement of the muscle to make sure that we injected it into the right muscles that controlled, for example, the wrist and the hand and the shoulder, because the frozen shoulder was there as well.

Jason Hellowell 37:01
Because of that, think I felt a little change from there, but I went twice. Actually, I went back for a little top up as well. I’m not so sure about the but, you know, I do believe that Botox works. I’m not that keen on putting botulism into my body. Call me weird. Call me whatever. I’m not that keen on that a you know, that’s not my thing.

Bill Gasiamis 37:32
Not weird, fair enough. Yeah, people have had really negative reactions to Botox, which makes sense, because it’s a poison.

Jason Hellowell 37:41
Yeah. So they just in those words there, right? Botox is a poison. So why would I inject poison into my body? Yes, I know it’s going to relax the spasticity, but it’s also disabling the muscle. So therefore my training ability, I don’t think, is going to be that good, like right now, my grip. Can hold on to a rope, and I can pull weights up and down with my right hand.

Jason Hellowell 38:05
If I have the Botox, I can’t hold on to things, and I like to be able to hold on and be able to do some exercises, even though it doesn’t give me great mobility. You know, I can. You know, I can. I can get down, up there and move it around, and the hand closes, you can see, but the spasticity now it’s difficult for me to push it out.

Bill Gasiamis 38:23
So it just releases the hand. It doesn’t give you more ability to activate the different parts that you need to activate, to do the things that you need to do, correct, correct. Okay, so botulism. The reason they do it is because it’s a poison. But dose matters. Dose is really, yeah, right food is certain foods are okay, but if you overdo certain foods, well, it’s a poison. It’s just a dosage is over a longer period of time, and you, you know, you cause all these negative things by eating the wrong foods. And, yeah, it’s having the same outcome.

Bill Gasiamis 39:00
So that with botulism, I imagine, because of the way it’s absorbed into the body, the way that it’s dealt with in the different locations, etc, that’s why they can pinpoint accuracy, put it somewhere and do, quote, unquote, good with it instead of cause harm, dosage. But yeah, there have been negative outcomes with people receiving cosmetic Botox, and who knows under what conditions they received that and why they have negative effects. Everybody’s different. Yeah, agreed, agreed. So I understand that.

Bill Gasiamis 39:36
So as far as your personality goes, you’re really interesting kind of guy, because let’s talk about the negative stuff, a little bit like, didn’t you have bad days? Weren’t you? Yeah, struggling having, you know, depressive thoughts or anything like that. Tell me about that side of it, not just the Woo, woo, everything’s fantastic. I’m going to go for it. Stuff. Yeah. What you’re human, right?

Family Life and Emotional Recovery

Jason Hellowell 40:02
Absolutely, absolutely. And, yeah, of course, you know, you have very bad days where you wake up crying in the morning and everything’s, you know, I can get myself crying now if you want, but it’s an emotional trip, right? The whole thing is an emotional trip. And I’ve, I’ve gone to therapy, you know, I have a friend who’s a holistic life coach, and she’s done a lot of work with me, working to understand things about myself, to be able to be stronger in on the path to recovery. You know how you use the vocabulary of what when you talk about yourself in this situation.

Jason Hellowell 40:47
The vocabulary you use about your situation, so that you’re not being derogatory to yourself? You know I’m going to say it now. You know I would say, Geez, I’m handicapped, or I’m disabled, or whatever. Well, no, you’re not actually. You’re just on a path to recovery, and there’s nothing you know. You’re absolutely fine, you you, you are normal. I used to say when I’m normal again. And she said to me, you can’t say that, because you are normal. There’s nothing wrong with you. You do. You’re just on a path to recovery. You’ve just got to recover.

Jason Hellowell 41:22
And we will work on that conversation, and we’ll go deep inside and dig out things and remove barriers and emotional things that you work on to to, it’s called the journey to, to help you be stronger, you know, yeah, but yeah, definitely, I’ve had black moments. I mean, come on, you can’t you know the the the not being able to do the things you would normally do. I mentioned riding motorcycles, water skiing, skiing, all these wonderful things that you can’t do that has, that has an emotional burden, no question.

Bill Gasiamis 41:58
Your, you know, your is it? Your predisposition to be problem solving, looking for solutions, rather than focusing on, again, on the negative. But as happens with a lot of people, when you’re in a stroke situation, the negatives tend to, you know, rear the rack of the heads. And let you know that things a little bit shit at the moment, and you’ve got to, you’re going to dig deep, and you’ve got to find new ways to overcome what’s going on in your life, right? 100%

Jason Hellowell 42:32
Yeah, I am definitely a you know, solution guy. I will look for, I believe that there’s a solution to everything. We just have to find the way. I believe that “Where there’s a will, there’s a way.” And if you work hard, you will get to the top of the hill, and that is the only result that I’m looking for, but the easy option, in many cases, is to just sit back and accept and “Oh, this is my situation.” I’m going to sit on the sofa, I’m going to eat the wrong food, I can’t exercise, I can’t walk, so I’m going to sit in a wheelchair. And that’s me done. Well, I’m not gonna accept that. I ain’t having that at all, no way.

Bill Gasiamis 43:26
And it seems like the easy route, but it’s not because it creates a harder life, still, still. It just makes things more complicated, difficult. And, yeah, yeah, it’s a different kind of hard. It’s a hard down the road rather than a hard effort, consistency, yeah, eating well, changing your habits, changing the way you speak to yourself, your behavior and all of that stuff. Yeah, what fully agreed? Maybe this is inaccurate, but I’m going to ask it like this anyway.

Bill Gasiamis 43:58
And then we can address it. Why is? Why is your wife not the person that you can sit down and talk to about those things that your life coach can talk to you about, as in, what does a third person bring into the conversation that you’re not getting in your regular daily life?

Jason Hellowell 44:19
Yeah, you know, I mean, I can definitely have deep conversations with my wife and my family and my kids and everything. That’s not a problem. But I think when you bring in a person who is professionally educated and has tools to work on understanding and helping you to come through these things, barriers, emotional barriers, that you maybe even don’t forget the stroke in general.

Jason Hellowell 44:43
I think talking to a third party who has tools and methodologies to help you to discover how to be a bit more you know, in line with yourself is, yeah, it’s fabulous, amazing. That my therapist is called Emma, and she’s genius.

Bill Gasiamis 45:06
Professional, Tools. That’s why, because your wife is your wife, and her profession is not to find ways and tools to get you over the line. It’s to provide emotional support, household support, you know, all the things you need to cook a meal, to take it to an appointment, to do all these sorts of things. And she offers great value, but she’s, it’s not her, it’s not the way she makes her living.

Jason Hellowell 45:33
That’s right, absolutely. And you know, like, yeah, professional person who is trained. And I’ll be honest with you, you know, I go to these sessions, the session is two hours long. If I let’s say I’ve done 11 sessions out of the 11 sessions, I would say nine or 10 of them, I have probably bald with tears for an hour and 45 minutes, like uncontrollable emotional release that’s not going to happen when you talk to your wife.

Jason Hellowell 46:08
This is people who have an ability and a tools and an emotional a spiritual connection. I don’t know what you want to call it, but they know how to get you to be honest with yourself, and I think that’s one of the biggest problems so many people have. They lie to themselves. They don’t face the truth.

Bill Gasiamis 46:32
Yeah, so these releases that you’re having are these long-held, pent-up things from your past that you didn’t know were there, or are these things that you professionally avoided confronting while it was okay and you didn’t need to confront it.

Jason Hellowell 46:48
And no, a lot of it is definitely, you know, past things that have happened in your life that you have, what I call boxed and shelved, you know, emotions that you have boxed and parked, and you just carry on and until you go back and dig them out, deal with them, face them. And as Emma says, embrace them with love. You can never get rid of them, and they’ll remain a blockage in your system or in your journey.

Bill Gasiamis 47:17
How are they blocking your life before stroke that you weren’t aware of and how have they released you now that you’re aware of them?

Jason Hellowell 47:23
I can’t tell you that because I didn’t, you know. I can’t tell you that because I wasn’t aware at that time that that’s where it was. But could that be an added reason for what’s happened? Who knows? You know, I just don’t know. I can’t explain it, but I can tell you it’s been good to do it.

Bill Gasiamis 47:41
Yeah, emotional trauma is definitely going to considered a a negative health risk to people’s outcomes, stroke, heart attack, cancers, like it’s all connected, because you change the chemistry of your body when you’re in constant emotional stress, turmoil, pain, suffering, and if you don’t run it and you don’t release it and let it go, well then it constantly impacts the body negatively.

Bill Gasiamis 48:11
So that’s really important. 100% 100% and it sounds like because this is the thing you’ve bragged about more than any of the medical interventions, it sounds like the thing that was one of the keys to, well, your recovery, and I’m not talking about being able to move your hand better, but that other part of recovery that’s in here and in your heart.

Jason Hellowell 48:36
You know, As I say to many people, the biggest challenge with the result of my stroke is the mental fight you have with yourself, within yourself. You know you have the physical issues, but it’s that willpower to carry on that is the challenge, and to have that mental strength is is one of the challenges. And therefore, I think you can take medicine and you can do medical things, and they’re obviously a part of the process.

Jason Hellowell 49:14
And you hope that they’re going to give you something. But that emotional control to manage the mental state of mind is, you know, you not unquestionably, one of the biggest things you have to deal with.

Bill Gasiamis 49:29
Is that what you refer to, what people would refer to as building resilience.

Jason Hellowell 49:37
Yeah, I guess, I guess partially Yes, yes. But building the resilience to continue with a will and a drive and a self motivation that you will win this.

Bill Gasiamis 49:51
Yeah, I, I went and did a whole bunch of coaching at the beginning of my journey as well 2012 right, man for about. Two years solid, and then counseling from a psychologist at the same time. So psychologist was more about helping me with the thinking, how i i did my thinking, and make me aware of the things that I was doing, saying acting, that were perhaps getting in my way. And then the Yeah, the coaching was more about how to take action on the new ways I wanted to think, the action on the new ways I wanted to behave, talk to myself, etc.

Bill Gasiamis 50:28
They combined, right, and they were the they were the biggest part of the transformation. That was Bill. Because the people that watch this podcast who’ve never met the bill before, the stroke at 37 that was a completely different person. I mean, we inhabit the same body, but they were completely two different people.

Jason Hellowell 50:51
In what way do you feel that you’ve changed?

Bill Gasiamis 50:54
Well, the old me would never do a podcast, would never write a book, would never have met 350 people from all around the planet that had gone through something similar to find a way to make sense of it, transform it, battle it out, overcome it. I wasn’t a problem solver. I was a problem finder, and that was about most of find a shitload of problems and then get stuck there and go “Oh my god, I’m overwhelmed. I’ve got all these problems.” And what I didn’t realize was, I was focusing on all the problems rather than all the solutions.

Bill Gasiamis 51:32
And I was and that created more problems in my head, in my heart, sure, in my entire life. And I felt like the walls were sort of coming in around me, and I find myself there sometimes as well. Still these days, okay, because the stroke makes me wake up in the morning like I did this morning with a headache that I’ve had for about, I don’t know, the last three or four weeks, on and off. Every second or third day, it kind of dissipates and then it comes back again.

Jason Hellowell 52:01
Have you tried to 10 recept yourself?

Bill Gasiamis 52:03
I haven’t tried it yet. I haven’t tried I haven’t I haven’t gone down that path.

Jason Hellowell 52:09
I thought that would be interesting for you.

Bill Gasiamis 52:11
I mean, on the path of kind of trying to convince myself whether I should go down that route. And the challenge I have with it is that there is no and maybe this is, again, that thing you know, where I’m getting in my own way. The challenge I have with it is that there’s no way of knowing whether you’re the right candidate or not, where some of the people I have interviewed about HBot will go through the process of determining whether you’re a candidate for H bot, and whether you’ll get results, which is the most important thing.

Bill Gasiamis 52:45
Because what that does is that minimizes the risk of people who haven’t got 20 grand or 30 grand to put it down and then get no result for it. And I know sure a lot of stroke survivors might not be in a situation where they’re comfortable financially, and especially when you’ve had a stroke and you can’t work, and you’re working a job, you know, finances an issue instantly, right?

Jason Hellowell 53:10
Sure, and I heard you on one of your other podcasts with people talking about insurance. You know, insurances are good. I was luckily insured, so the hospital was covered by the insurance. And the insurance has been fabulous on that level, but when it comes to being an outpatient, having left hospital as an outpatient, you need physiotherapy for as long as it may need.

Jason Hellowell 53:32
And these insurances have a limit to how much they will pay for physiotherapy or chiropractic or occupational therapy, and that i is, is for many people a problem. And, you know, of course, I feel the expense, you know, it’s an expensive game. This whole thing is very expensive.

Bill Gasiamis 53:50
Yeah, I’m at the chiropractor, I’m at the my therapist, I’m at the acupuncturist, I’m at all those people. So regularly, you’ve tried acupuncture.

Jason Hellowell 54:01
You mentioned acupuncture, so I had to bring that one in too. So had a very, very good acupuncturist from who was from Switzerland, called Andrew, and he came to my house and we did acupuncture, and I’m talking needles across the top of the head, with electricity and all these things now, was that a part of my reasons for recovery at the time? I don’t know his his healing, his pain removal was pretty intense and very good. It wasn’t permanent, unfortunate, yeah. But acupuncture was also a good one.

Jason Hellowell 54:37
And I’ve watched, I don’t if you ever watched the video on YouTube called “999 Needles” or something.

Bill Gasiamis 54:43
No.

Jason Hellowell 54:44
Do you watch that? It’s about an American guy who unfortunately passed, but he was very affected by his stroke, and he went to China for acupuncture, and they managed to do some pretty intense recovery on him. And he number of years later, he had another stroke and didn’t. To survive, but that was an interesting one.

Bill Gasiamis 55:03
Maybe you’ll send me the link, it will include it in the show notes, and then we’ll get people to go have a look at it.

Jason Hellowell 55:10
Yeah, maybe not sure if I should reference to that. Maybe Yeah, I can do Yeah. But yeah, interesting acupuncture is one. What else have I tried? I feel like I’ve tried everything, and it sounds like except stem cells. Stem cells? No, I’m not going to stop. Yeah. Have you heard about stem cells? What do you think to that?

Bill Gasiamis 55:34
I have but nothing positive in that. Again, stem cells seem to be not negative, so they don’t tend to cause negative side effects. The challenge with them is, how do you get them into the location that you want them to go, and how do you ensure that they target the part of the brain that they can that they need to target, and and where this Where do the stem cells come from, and which ones are the best. I know there’s a bit of research and little bit of work being done, but again, in the Western countries, there is this seems to be a ethical issue around stem cells.

Bill Gasiamis 56:10
And I know in Panama, there seems to be more work done on stem cell research than anywhere else. And I think the reason is because the government is a little more relaxed about the so called ethical issues around stem cells, and when they come from, and it’s a little it’s one of those places in the world where there’s a little less what’s the word government into interference into.

Jason Hellowell 56:35
Red tape.

Recovery of Brain Hemorrhage Challenges and Future Plans

Bill Gasiamis 56:35
Yeah. So I’ve had somebody who I know who’s had stem cells in the hip before and told me that they’ve got good results in pain relief, etc. But again, yeah, it’s about it’s a bit of an arthritic hip, so it doesn’t remove the damage that the arthritis has caused. It somehow seems to regenerate supportive tissues or or structures that make the pain ease, but again, it also wears off. It doesn’t last forever, similar to Botox, similar to acupuncture, the temporary resolutions.

Jason Hellowell 57:13
Fixes. Okay, interesting, yeah, you know, the story that you talked about one day in your podcast with this drug that they found, DD-970, I think it’s called.

Bill Gasiamis 57:28
Yeah, the trial that was done recently.

Jason Hellowell 57:32
Yeah, Dr. Tom, something, in UCLA.

Bill Gasiamis 57:36
They showed it in UCLA and it showed positive results in mice that they can reduce inflammation in the brain with a pill, yeah, tablet.

Jason Hellowell 57:48
Yeah. And, you know, then there’s neuro link in all of these things. Basically, for me, those things all provide a positive outlook that, and with AI and science now and technology, I’m quite confident that we will find something soon, not, not, not too much in the distant future, that is going to be positively able to help with mobility, over, over and above, physical training. You know, I definitely believe in physical training.

Bill Gasiamis 58:24
I do believe there was some groundbreaking work done in people with quadriplegia and paraplegia, where they were able to bypass the damaged part of the spine, from the top of the spine to the path underneath the damaged area of the spine, to take the signals and send them further down the spine, bypassing the area that was damaged. Again, not massive inroads, but results, some kind of theoretical results, anyhow, being able to sort of show that.

Bill Gasiamis 58:57
And if you think about people who have lost an arm, they have a robotic arm that they can open and close and twist and grab things with it, kind of is the similar type of thing, yeah. But somehow they they get those signals to transfer from the part that’s remaining to another device and create a create a movement, create an outcome.

Jason Hellowell 59:26
Yeah, I that there’s got to be a way. I have this dream that we could create a form of poly filler, or silicon filler, that we could go in and that silicon filler can fill the gap. Because if I showed you the scan of my brain, there is, there are definite black areas, right? Yeah. And you know, you have this vision that if you could just go in with a poly filler and fill it, then that material that has gone in could carry the neurons, and it would like a plant grow new roots through that piece. At the moment, the black.

Jason Hellowell 1:00:00
App is unable to grow. It needs to be reconnected. Put some poly filler in there, and Let’s reconnect the wires that are in between. Surely, that’s possible in today’s science. You know what I’m saying? It’s like, I have this dream that we could create, that it’s I like the idea.

Bill Gasiamis 1:00:15
Love him or hate him, we need another Elon Musk type character to get that product under development. I know with neural link, there’s been a bit of a challenge. A cousin of mine is a neurologist, and he spoke to me about the challenges with stuff like neural link, because the implants that they put into the brain to sort of generate that additional function with the implant chip, they say that those prongs that they put into the cavity of the brain, or wherever they go to sort of embed.

Bill Gasiamis 1:00:49
They say that there is a challenge with them in that they get ejected from the area that they were installed over a period of time, and reinstating and re intervening with the brain, you know, creates additional challenges and risks. So not as, not as clear cut as what it might have been like, thought up for be like early on, long term, people who are being studied with it seem to have had this, what’s the word, like, like, a disconnection with the device? And, right? They’re not certain yet how to address it.

Jason Hellowell 1:01:30
You know, hence my thinking that if you could have this silicon filler that was able to carry the, you know, I don’t know, like a special potting potty that allows growth for the neurons and wires to grow through, slowly, must be possible.

Bill Gasiamis 1:01:49
Conductive of electrical type.

Final Thoughts and Advice

Jason Hellowell 1:01:51
That was the word I was looking for.

Bill Gasiamis 1:01:53
Yeah.

Jason Hellowell 1:01:54
My lack of English words, there you go. Even though I’m English.

Bill Gasiamis 1:01:59
Now you’re doing alright. You’re doing alright. Well, that’s really interesting. So we’ve had a very interesting conversation. What? There’s people listening here? You know, the title of this podcast is going to see, going to be some like, he’s tried everything, or he’s tried this. He’s tried that. People are going to jump on and they’re going to have a listen, like, what would you sort of say to people who are just going through what you and I have been through?

Bill Gasiamis 1:02:28
Because some people are finding this podcast in their hospital beds just after they’ve had a stroke. So what do we tell people, I wish I had that journey?

Jason Hellowell 1:02:37
Well, firstly, I wish I’d done that and found it the when I was in hospital, you know, I What would I say? You know, hopefully you have somebody who cares for you and loves you, which I had, and does the research. I think I would have liked that hospitals and doctors who were treating me at the time were more open to telling you about all these different opportunities or possibilities that there are, you know, instead of just saying you’ve got to go down the path of physiotherapy and occupational therapy and repetitive movement and data you know.

Jason Hellowell 1:03:20
That’s what you’ve got to do. I would have liked somebody to tell me of all of these different things we can do now, of course, then I went to this place in Switzerland, and they had of all those things very expensive, so prohibitive to many people because of the price. If you can afford it, great. The sooner you go to those places, the better it is. I think with with a stroke, the quicker. If I knew that, you know, those early six to seven to 10 months were, how important they were, I may have made more of an effort, you know.

Jason Hellowell 1:03:58
Because at the time you’re very neural fatigue. You have fatigue. You’re tired. You know, I’m not as tired now as I was. So I can fight harder. But the reality is, had I known that and pushed harder in those first six months, could I have made a difference? Now, I did push quite hard. We did do a lot of work, and I think there is also a natural recovery process that goes on. I believe that even, you know, I went to one doctor who said to me, you know, once you’ve passed your six months to one year, you’ve pretty much done the recovery you’re going to do.

Jason Hellowell 1:04:36
That was probably the worst statement any doctor could ever tell me, because that really knocks you back. I agree you who shit? You know, luckily, my wife and other people kept me going. You can’t say that, because there’s always hope and there’s always, you know, the more effort you make, the more chances you are going to recover. You. You will recover. You just have to work hard and believe.

Bill Gasiamis 1:05:04
And you might recover with an arm that doesn’t work. You might recover with a leg that doesn’t work, yeah, but that after that six month period that they keep talking about, I know why they bloody say that. But after that six month period is a, you know, they you know, they call it the plateau. People hit the plateau, yeah, but the reality is, that’s when things become nuanced.

Navigating Plateaus in Recovery of Brain Hemorrhage

Bill Gasiamis 1:05:26
You start to focus on little bits of the recovery that you didn’t get in the first six months, that might also include the emotional recovery, because that’s a part of the recovery that people gloss over and overlook.

Jason Hellowell 1:05:42
100% you know, you talk about plateau. I think I’ve hit multiple plateaus. You know, some days I’ll wake up and I will feel that my leg is less effective than it was two days before. Now, the way I deal with that is, as you said, every time there is a difference, it’s a difference. It may be a backwards movement, but that backwards movement may well be the body just going, hold on a second. We’ll just recheck this passage before we go there, and then two weeks later, like this morning, when I went for my walk, my walk was so much better than it was two days ago.

Jason Hellowell 1:06:22
But then I’m going to say two, three weeks ago, my walk was very good, and it kind of went down. And I feel that every time I hit those plateaus and I have these sort of down moments, the next step up is a bigger one. So all of these plateaus are bounding levels where you improve, you might go back, you improve, but every time you improve, it’s that little bit better than it was. Yeah, that’s my result and feeling of it. But the plateau is definitely an issue, and it’s also one of the spaces where you’ve got to be really mentally strong, because it will, it smacks you back.

Bill Gasiamis 1:06:58
Yeah, you kind of got to anticipate it a little bit it might come, if it does, don’t panic, just yeah, let it go, let it do its thing, and then reassess a couple of weeks after this supposed plateau, or whatever has passed.

Jason Hellowell 1:07:14
Exactly, and you, I think that’s one of the things that I would say to somebody now, and I’ve spoken to a lot of people who I’ve found online, stroke survivors. I’ve was a couple of people here, stroke survivors, you know myself and this guy, Galinda. He’s a fighter. I mean, he’s a fighter, unbelievable fighter. And you know, the happiness of of being alive is key. You have to be focused on I’m still here. It, you know, it’s easy for me to say, because I have my speech.

Jason Hellowell 1:07:50
And you know, if you look at me now, I like you. We work. We can’t tell that we’ve had strokes, you know, severe brain hemorrhage, and that’s difficult to say to somebody who maybe has aphasia and many other issues where they can’t communicate or whatever. That’s a bigger challenge, right? But you’ve gotta stay positive. You’ve gotta believe that you can.

Bill Gasiamis 1:08:12
Yeah, I agree with that.

Jason Hellowell 1:08:15
I think an Etanercept for people with aphasia is one of the bigger things that works is it is aphasia speech as from what I’ve seen.

Bill Gasiamis 1:08:28
I interviewed Lorenzo a few weeks ago, and we spoke about his AVM brain hemorrhage, like me, and as a result, his vision is impacted, and he used to be a tattoo artist, and, you know, he’s lost that ability. And for a stir, for a laugh, I sort of said “Why? Why don’t you see if somebody would be willing for you to do a tattoo from a blind person?”

Bill Gasiamis 1:08:58
It would have to be the first tattoo from a blind person, and in this day and age with the amount of body art that people have, yeah, surely that could be interesting.

Jason Hellowell 1:09:10
And what did he say?

Bill Gasiamis 1:09:11
Yeah, it was like his eyes lit up, like you could see that he kind of had a moment of, like, I don’t know if it’s a thing, but if somebody wants to be tattooed by me, yeah, I’ll, I’ll tattoo them, yeah. I mean, you can create, yeah, you can create a stencil and work within the stencil so you don’t go all over the arm or all over the leg or wherever, and, yeah, and look at that piece of art behind that piece of art. I’ve had a lot of artists who said they can’t be they can’t paint anymore because they can’t see properly, or their hand, or their hand trembles, or they can’t hold the brush properly.

Bill Gasiamis 1:09:47
Like, if we look at that piece of art behind you, who cares? You’re still an artist. You still have that capability of understanding how things go on a canvas, color and texture, all these things. I don’t even know what the words are, so, yeah, I kind of want to encourage people to take their identity and bring it and combine it with their stroke identity. So they’re not just one or the other. They are both of them, and they are weird and strange and different because they’re tattooing blind, or they’re painting blind, or whatever they’re doing like to me.

Bill Gasiamis 1:10:28
I don’t want people to say, I can’t be this anymore, because this happened to me. It’s not great. It should be one or the other. I think it should be every part of you combined into this thing that you’re going to move forward as and you need to develop that. I don’t let anyone tell you that you have to stop now, like sports people who are in the Paralympics, who win gold medals after they’ve had a massive car crash or, do you know?

Jason Hellowell 1:11:01
Yeah, absolutely. You know, I think for me, you know, I say to myself, this is one of those challenges that been thrown at you to teach you a bunch of things to make you a better person. You know, my has my personality changed? I don’t think so, but maybe other people tell you I have, but I definitely am more conscious of things and the way of being than I potentially would be before. Yeah, the diet and the health and all of these things you’ve got to carry on to do.

Bill Gasiamis 1:11:36
Yeah, and not better, as in you were bad or terrible or worse, before, but more evolved, more wise, more knowledgeable, you know, like 100%

Jason Hellowell 1:11:49
you know, I would like to create a charity to help other people in the similar situation to me. You know, I want to, I would love for people who can’t afford the tools to recover. It would be great to have a foundation that could, even if it’s only 20 people in my vicinity, or that I can find out about that I can help them on the path to recovery. I would love to do that. And I have a few tricks that I would like to you know, if I could find somebody to invest a few million dollars into something I can make a way to do this. So it’s very possible to do that.

Bill Gasiamis 1:12:25
Yeah, and some philanthropy that would be amazing as well. That’s my hope for the podcast, is say that I get some sponsors and or I get some, you know, decent revenue from from YouTube or wherever. You know that would be my hope. That hasn’t happened yet. But you know, you never know I should do.

Jason Hellowell 1:12:45
I mean, you it’s a great podcast, and you know, I, I fell across it. There’s a lady in America who’s a stroke therapist, occupational therapist. I forget right now the name of the lady and I was on there. And when you look at it on YouTube, it, you know, and you search for these things, you came up as one thing. And then I read, watched a couple of your podcasts, and when you talked about it and recept, and I thought, I just drop you that note and say, I’ve tried everything, pretty much, or I’ve tried most of the things.

Jason Hellowell 1:13:20
Might be as a worthy conversation, you know. And I would love to partake in conversations with other people too, you know, where we build a conversation with people, to encourage people to be stronger emotionally. Because I think the emotional and mental fight is going to be the biggest one for everybody.

Bill Gasiamis 1:13:38
I tend to agree with you, yeah.

Jason Hellowell 1:13:40
And I think, if in conversation, you can help somebody giving them back up. And, you know, a conversation with somebody is a wonderful thing, isn’t?

The Podcast That Heals: Bill & Jason on Connection, Recovery, and Regret

Bill Gasiamis 1:13:50
Man, it’s the best, I mean, it’s literally been the key behind my own recovery without this podcast, I’m not sure where I would be in the mental health space, in the emotional space, because even though I can’t represent the broad spectrum of stroke, because, you know, I look the way I look, and my experience is my own. Yeah, the people that I’ve had, they’ve arranged every version of stroke, from aphasia and actually not being able to talk at all while we’re on the podcast.

Bill Gasiamis 1:14:23
Yeah, to people who can’t walk, to people who have had a stroke and don’t look feel talk about it in any way that it impacted them negatively, like there’s a one in 350 of them, but there is at least one person who had the medication immediately, and everything went away and went better, and they don’t have any deficits to deal with and overcome, which is like, amazing.

Jason Hellowell 1:14:51
The few of us, that’s a friend of mine’s mother, the other day. A friend of mine’s mother had that and was, you know, straight away and has no effects. And I’m so happy for them, and that’s amazing. I wish. You know, you kind of wish, don’t you? There is always that fight in your head when you look, in my case, you look back and go, Why didn’t I see that email? Why didn’t I do this? And you can beat yourself up for days on end. Changes it ain’t going to get you nothing. Not going to give me nothing, if you can’t do anything about it, pack it.

Bill Gasiamis 1:15:23
Yeah. What I love is that the I looked at the stats on the YouTube channel and the people listen to the podcast is about 60% men, 40% women. Now I didn’t expect that. I didn’t expect that men would be listening. Now they’re not the people who reach out the most. It’s a lot of women who reach out and do more of the conversation side, but the men are paying attention listening into the background. So congratulations to everybody who pays attention and listens. Congratulations to those blokes who are paying attention or listening to us.

Bill Gasiamis 1:15:57
Thank you for being on the podcast and reaching out. My pleasure, and Yeah, my pleasure. And I’m really excited by the amount of people who reach out and say I’d love to be on the podcast, and I don’t have to reach out to them and find them now, that is exactly why I created this community, to create a platform for people to come on board. And what it’s helped me to do is be a connector every, every so often.

Bill Gasiamis 1:16:20
I find out who something from somebody that I remember, that I can pass on to somebody else, and that that’s a life change. Very cool, decreases the time that we that it takes to gain new information. And yeah, it’s brilliant, I love it. Thank you so much for being in my podcast.

Jason Hellowell 1:16:39
Amazing, my pleasure. Thank you for having me on board. It’s, you know, it’s an interesting topic, isn’t it, and one that affects a lot of people. So we need to spread the word, spread the word, like I said, if, if only the medical practitioners spread the word about alternative things more openly. It could be different.

Bill Gasiamis 1:16:59
It could be let’s hope. Let’s hope that things change and continue to improve for stroke survivors, mate, thank you so much for joining me.

Jason Hellowell 1:17:09
My pleasure, all the best. Thank you very much.

Bill Gasiamis 1:17:12
That brings us to the end of this remarkable conversation with Jason, a man who faced a life altering brain hemorrhage, lost his mobility and speech, and then set out to reclaim what he could by trying nearly everything he could find, from hyperbaric oxygen to etanercept in Denmark, from frozen shoulder to holistic coaching sessions that moved him to tears. Jason reminds us that the recovery of brain hemorrhage isn’t just about medical treatment. It’s about the courage to keep showing up even when progress is slow and the emotional toll is high.

Bill Gasiamis 1:17:47
If this episode resonated with you, please let me know. Like comment and subscribe on YouTube or leave a review wherever you’re listening, and remember even just pressing play or listening through the ads helps this podcast stay alive. If you’d like to go deeper in supporting this community and help me keep sharing stories like Jason’s, please visit patreon.com/recoveryafterstroke.

Bill Gasiamis 1:18:13
Your contribution helps ensure that the next stroke survivor, maybe one Just days into the recovery, finds hope, connection and possibility right when they need it most. Thanks again for being here, wherever you are on your recovery journey, remember your stroke isn’t over, and your next breakthrough might be closer than you think. I’ll catch you in the next episode.

Intro 1:18:35
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 1:19:04
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 1:19:29
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 1:19:56
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The post From Paralysis to Progress: One Man’s Quest to Recover After Brain Hemorrhage appeared first on Recovery After Stroke.

Fibromuscular Dysplasia (FMD) and Stroke: What You Need to Know

Fibromuscular dysplasia (FMD) is a rare condition that can silently impact arteries and, in some cases, lead to life-changing events like stroke. While not commonly discussed in stroke recovery circles, it’s a diagnosis that stroke survivors and their caregivers should be aware of, especially when the stroke occurs in a younger individual or without traditional risk factors.

What Is Fibromuscular Dysplasia?

Fibromuscular dysplasia is a condition that causes abnormal cell growth in the walls of medium-sized arteries, most commonly affecting the carotid artery (in the neck) and renal artery (leading to the kidneys). This abnormal growth can lead to areas of narrowing (stenosis), aneurysm, or artery dissection—all of which may disrupt blood flow and increase stroke risk.

When FMD impacts the carotid artery, it can cause weakness or tearing in the arterial wall, leading to ischemic strokes or transient ischemic attacks (TIAs).

Stroke and Fibromuscular Dysplasia: Understanding the Link

Although strokes are more often associated with high blood pressure or heart disease, FMD presents a unique stroke risk, especially in younger, otherwise healthy individuals. Many stroke survivors who are ultimately diagnosed with FMD were unaware they even had the condition.

Common symptoms and warning signs can include:

• Frequent, unexplained headaches
• Dizziness or visual disturbances
• Pulsatile tinnitus (whooshing sounds in the ear)
• Sudden numbness or weakness (often a sign of a TIA or stroke)
• Right-side paralysis if the left carotid artery is involved
  

How Is Fibromuscular Dysplasia Diagnosed?

FMD is often discovered after a stroke or TIA, through imaging like:

• CT angiography
• MR angiography
• Duplex ultrasound
  

These tests can detect arterial abnormalities, helping clinicians make a definitive fibromuscular dysplasia diagnosis.

In some cases, FMD may be coded in medical records using ICD-10 codes such as I77.3 (fibromuscular dysplasia).

FMD and Stroke Recovery: What to Expect

After a stroke caused by FMD, recovery may involve:

• Neurological rehabilitation
• Speech therapy for aphasia
• Occupational therapy to address cognitive and sensory deficits
• Ongoing vascular monitoring with FMD imaging
  

Because FMD is chronic, regular imaging of the carotid and renal arteries is essential to monitor for new arterial changes or dissections.

Is There a Fibromuscular Dysplasia Diet?

While there’s no official fibromuscular dysplasia diet, stroke survivors are typically encouraged to follow a heart-healthy, anti-inflammatory diet. This may include:

• Whole grains
• Leafy greens
• Healthy fats (like olive oil and avocado)
• Limited processed sugar and salt
  

These dietary choices support vascular health and reduce stroke recurrence risk.

What Is the Life Expectancy With FMD?

Many people with FMD live long, full lives. However, outcomes depend on early detection and whether complications like stroke, arterial dissection, or aneurysm rupture occur. With proper monitoring, lifestyle adjustments, and care from a neurologist or vascular specialist, stroke survivors with FMD can continue progressing in their recovery.

Final Thoughts: FMD, Stroke, and What Survivors Should Know

A stroke caused by fibromuscular dysplasia can feel like it comes out of nowhere. That’s why education, awareness, and self-advocacy matter. If you’ve had a stroke and don’t know why, or if your medical team suspects arterial dissection, ask about FMD and request thorough vascular imaging.

Whether you’re adjusting to new deficits, navigating medical scans, or simply trying to understand what happened to your body, know that you’re not alone. FMD may be rare, but with knowledge and support, you can regain your strength, protect your health, and continue moving forward.

Fibromuscular Dysplasia (FMD) and Stroke: Tara’s Journey of Recovery and Renewal

Fibromuscular dysplasia (FMD) led to Tara’s stroke. Her story of loss, recovery, and rediscovery offers hope to stroke survivors everywhere.

Support The Recovery After Stroke on Patreon

Highlights

00:00 Tara Miller’s Introduction and Initial Stroke Experience
05:46 In a Blink of an Eye: Tara’s Sudden Stroke After Mysterious Illness
19:39 Fibromuscular Dysplasia (FMD)
30:33 Stroke Follow-Up: Monitoring, Not Intervention
41:06 The Clock Test: A Stroke Survivor’s Recurring Challenge
44:12 Invisible Deficits and the Power of Peer Support
51:09 Healing in the Saddle: Tara’s Journey with Sierra
1:02:45 Quieting the Mind: Tara on Naps and Brain Fatigue
1:08:39 Parenting Through Stroke: Missed Moments and Long-Term Understanding
1:12:15 Small Wins, Big Heart: Tara’s Stroke Recovery Journey

Transcript:

Tara Miller’s Introduction and Initial Stroke Experience

Bill Gasiamis 0:00
Before we begin today, I want to say thank you to everyone who’s left a comment, written a review, supported the show on Patreon, clicked the YouTube super thanks button, bought a copy of my book, or even just chose not to skip the ads. You’re the reason the podcast reaches someone in the middle of their darkest moment. You’re helping them feel seen. You’re helping me keep this going. Today’s conversation is one of those revelations, the kind that stays with you.

Bill Gasiamis 0:29
Tara Miller was 46 when she had a stroke, seemingly out of nowhere, she wasn’t sick, she wasn’t at risk, and yet, a tear in her artery caused by a rare condition called fibromuscular dysplasia, changed everything from a busy career and parenting two daughters to losing her ability to drive, to cope with numbers or to handle the spreadsheet, Tara’s life didn’t just pause it reset.

Bill Gasiamis 0:58
What followed was a slow and deeply personal process of rediscovery through invisible deficits, tias and even a collapsed lung, Tara found new strength in volunteering, horseback riding and learning to show herself the patience she never had before. If you’re in the middle of rebuilding yourself after stroke, this episode is for you. Let’s dive in. Tara Miller, welcome to the podcast.

Tara Miller 1:27
Thank you, Bill. Thanks for having me.

Bill Gasiamis 1:30
Thank you for joining me. I look forward to our conversation. Tell me a little bit about what it was like for you before stroke.

Tara Miller 1:42
Before stroke seems so long ago to me, only three and a half years ago, but a lifetime ago, to be honest with you, before stroke, busy, Busy, busy, I had a career, and he mean, we human resources of payroll. I, I am a mom of two daughters and a wife, but we were busy with life at the time of my stroke in 2021 it was COVID, so I was working at home, but generally I wasn’t at a person that would work at home.

Tara Miller 2:35
So that was kind of, I mean, the world that was an odd time for I believe all of us, but at the time on my stroke, I was working at home, and I just, I don’t, I don’t really think about pre stroke anymore. I don’t have pre stroke is, is a lifetime ago. To me, it’s a lifetime ago.

Bill Gasiamis 3:03
Do you recall what you were focused on back then? What were your goals? What were you hoping to achieve?

Tara Miller 3:12
That’s changed dramatically. I was looking to move up in my career, to be honest with you, and that has that that’s at a standstill, that’s I’m I’m not even back at work. There’s not even like a return to work in place. My company, we have said our goodbyes. Just given the length of time, I have been off, understandably, but at that time, three and a half years ago, I was looking to move up in my career.

Tara Miller 4:01
My youngest daughter was entering her teen years, so you can imagine that was going to be fun and challenging and very demanding of me as a mother, with driving her around, which also came to a dead stop with losing my license for medical reasons, and just everything just came to a stop.

Bill Gasiamis 4:29
How did you view your health? Did you have a sense of whether you were healthy or not, or were you out of shape? Or was there anything that you look back on now and go, or, you know, then I didn’t take care of that or this.

Tara Miller 4:45
No, I would say I wasn’t unhealthy. I wasn’t the healthiest person, like, I’m not a fit guru or anything like that, but I wasn’t unfit. No. Well, I it came out of the blue. It was shocking. I just, I mean, I remember the day like, like it was yesterday.

Bill Gasiamis 5:13
Tell me.

Tara Miller 5:15
Yeah, just it’s even sitting here in this desk, remembering back, because I was actually working down in this room the day it happened. It didn’t happen in this room. It did happen upstairs in my own bedroom, but I had been ill that week, probably related to the stroke, but I had no idea what was going to happen the night I had my stroke, just no idea.

In a Blink of an Eye: Tara’s Sudden Stroke After Mysterious Illness

Bill Gasiamis 5:46
Did you when you say you were ill? What kind of illness did you have? What? What the issue?

Tara Miller 5:53
Earlier that week, I was I had some headaches. I have had headaches, foot stroke, and I have a lot of headaches post stroke that I’m still dealing with, as I think a lot of stroke survivors do. I’ve tried everything, but that couldn’t be another, another topic. So earlier in that week, I had had a headache, one of my money, and I was just feeling unwell, kind of like sick to my stomach. So I had been vomiting, aggressively, vomiting like bruised myself vomiting just because it was so aggressive it was so I was home, I actually, I mean, I was home, but I was home sick.

Tara Miller 6:54
So I called in to sick, even though I was working from home, so I had missed a couple days of work, and then I went back on the Wednesday, Thursday and Friday, and worked my full shift on Friday, or my worked a full hours on Friday, and still wasn’t feeling good. I still had like this stomach.

Tara Miller 7:19
I didn’t know if I had a virus or just my stomach was unwell, and I never wanted to be sick again the way I was, because it was aggressively aggressive, and I went to bed early. And then my world changed. Our world changed. My family’s world changed in a blink of an eye.

Bill Gasiamis 7:44
You went to bed early to get some rest, to hopefully feel better, and then what happened? What did you notice that wasn’t the same? How? How did it go down?

Tara Miller 8:00
It’s just, it’s, it’s surreal to me. It’s surreal because I’ve taken first aid, and while I was in, like, having a stroke, I did not realize I was having a stroke, but while I was in it, I did not know what like, I was fully aware something was different, but I did not know what was different. I i went to the washroom, and then I came back and I had this sensation of, like, this overwhelming sensation of dizziness and like, like a vision loss. So I crawled into bed, and I have one of those beds that can go up and down. And I was watching, and it’s kind of ironic.

Tara Miller 8:58
I was watching shits Creek, like, I love it. I love that show. And I was, I felt this overwhelming sensation that I wanted to go to bed like, I just felt like I’m so tired, and then I was lying there, and I don’t know what episode it was, I don’t remember now, and I don’t know what had happened, but, like, my right side was went numb, so I just thought, Oh, my arm’s asleep. Like, that’s so weird, because I felt something under me, and I was like, what is that? And then it was my arm. I’m like, That’s so weird, like, what’s what’s going on?

Tara Miller 9:42
So I lifted it and it would fall like, That is so weird. And I kept like that is, like, why is it so asleep? Like, it should wake up now, because I’m holding it, and I’d pick it up, and it would fall again, and it would just fall, like, fall back. And I’m like. This is so weird. I don’t know what is going on, but I had this overwhelming sensation. I just wanted to close my eyes, so I was looking for my converter that would put my bed down. And then I kind of this is, this is so weird, but I kind of slid off my bed because I was paralysis on one side, but I did not know that.

Tara Miller 10:25
Because in my head, I didn’t know I was, I guess, stroking out ultimately. So now I’m on the ground, and half of my like my right side, is fully paralysis. So now I’m on the ground with one of my cats, not the one that you’re watching now, and I’m looking at him, and I’m like, What is going on? This is so bizarre to me, like, this is weird. So I finally my husband yells up to me, and he’s like, hon, are you okay?

Tara Miller 11:02
And I kind of, I thought I yelled down to him, like, no, like, something’s weird, but what I feel comes out is what’s, you know, Snoopy, and the like, blah, blah, blah, yeah, that’s what I feel was coming out. So I literally crawl back on my bed, and I’m sitting there, and my husband happens to come up because he he doesn’t hear a response from me, and I show him, I say to him.

Bill Gasiamis 11:43
Let’s pause here for a moment. At this point in the story, you’ve heard what it was like for Tara to lose her career, her license and the ability to do something as routine as math, all while looking fine from the outside. If you’re listening to this and thinking, That’s me too, I want you to know you’re not alone. Invisible. Deficits are real. The exhaustion is real, and making it through the day can feel like a full time job.

Bill Gasiamis 12:09
If this part of the story resonated with you, drop a comment on YouTube and let me know what’s been the hardest part of your recovery that others don’t see. Also, a huge thanks to everyone helping this show grow your YouTube super thanks your support of the book, and those of you on Patreon, you’re keeping this conversation going. All right, let’s get back to Tara as she begins to talk about rebuilding life with fatigue, horseback riding and a new kind of resilience.

Tara Miller 12:41
Look at my arm, so I lift up my arm, and he looks at me, and his face drops about 10 shades. And I’m like, Oh my God, what’s wrong? And he’s like, I’m going to call 911, and I’m like, why? But I guess I didn’t realize I wasn’t really speaking like so it’s gibberish, and to me, I’m speaking perfectly fine, but to him, I’m not making any sense. So he calls 911, and then paramedics came and they call over to a hospital that has a stroke unit and well, I guess the rest is history.

Tara Miller 13:29
But the fun thing about the paramedics coming is, when they come to get me, I don’t have a droopy face, so I only have two of the three symptoms, yeah, the fast. And we do fast. We don’t do be fast. We’re starting to do be fast here, but it’s just fast. So as we’re as we’re like, in my driveway, I’m like, I have to be home by Sunday, I have payroll to do, and the paramedics are like, Yeah, I don’t think so.

Tara Miller 14:08
But you you talk to the doctor. I’m like, Well, no, like, I gotta be home. Like, I don’t think so. Yeah, yeah, okay, so then we went to the hospital. I don’t know where I was, like, I don’t know if I was like, in my body or not, because I was, I was, I was all coherent, but I wasn’t really an I don’t think I knew the severity of what was going on, because then, when we got to the hospital and they opened up the doors.

Tara Miller 14:50
There was, like, all these doctors and nurses at the at the like the doors, and I’m like, Are they there for me? And the paramedics are. Yes, it’s like an episode of Grey’s Anatomy for me. And I’m like, Oh my goodness. They’re like, this is very serious. I’m like, Well, it’s, it’s, it’s odd to me, because I feel I’m perfectly fine, wow, like in my head, but I don’t, I don’t realize the severity of it.

Bill Gasiamis 15:22
There’s a disconnect between your brain, which is stroking out the seriousness of the situation your body, and that whole test that you were doing where your arm wasn’t working. That’s just it’s very common. People often tell me how they observe their body during the stroke. They’re not alarmed or concerned or anything, and they just find the fascinatingly bizarre that their arm or their leg is not working. It’s not uncommon at all. So you get to the hospital, they treat you like royalty. They bring you in, and then what? What happens then?

Tara Miller 16:10
So I did ask if I could go to the washroom, and the doctor’s like, No, we’re going to do some tests on you. Can you wait? And I remember saying, I guess so, but, and she said, this is very serious. And I’m like, okay, whatever, so I just went with the flow, keep in mind I had on my pajamas, because it was bedtime, and I asked the paramedics if I could change, and they’re like, no. So I looked at my husband, so I left the house with a T shirt on, shorts and my cell phone.

Tara Miller 16:58
So when I get there, I have my T shirt, shorts, my cell phone, and they put a pair of yellow socks on me because I was bit cold, like after they do all these tests. I did a CT scan, I believe I was still stroking, so the doctor at that hospital, did not administer the TPA. She did not it was, I have learned it could have gone either way, but she took the more conservative approach, I would say, and did not do it, because she didn’t see the stroke at the time on the on the CAT scan. So they admitted me to the stroke ward.

Tara Miller 17:56
I was there for a week. We did the MRI, which that was my first MRI ever, and that is absolutely scary. I’m used to them now, because you get used to them after having a brain injury, but I had the MRI. So the stroke was a Friday night. I had the MRI, I believe, on the Monday, and then it came back. Yeah, indeed, it was a stroke. And when the doctor told me, I just started to cry.

Bill Gasiamis 18:37
Was that the realized something was actually seriously wrong.

Tara Miller 18:44
I was like a stroke, like I’m 46 years old. It seems weird, and I just, I can still remember him telling me, because I was just coming back from walking around with my walker, and I mean, not even that far, because I couldn’t walk that far. And him saying, Yeah, you’ve had like a left side stroke.

Bill Gasiamis 19:15
So were you walking within seven days? Were you back on your feet? Did that initial paralysis settled down.

Tara Miller 19:24
It did. I was walking with a walker.

Bill Gasiamis 19:27
Yeah. So it started to settle down quite, quite quickly while they were treating you. So it was an ischemic stroke. Do they know what was the underlying cause?

Fibromuscular Dysplasia (FMD)

Tara Miller 19:39
So the medical term is fibromuscular dysplasia. So artery dissection, which means I have weak arteries, and we would never have found that out unless I had a stroke. So it stemmed from the neck and then went to my brain. Now with, with, it’s common that. So that was a major stroke, probably the week before I did have a mini stroke that was on the right side. And it’s quite common that you have a little stroke before a big stroke, but I might have had just a headache, which I did.

Tara Miller 20:37
I’ve had headaches commonly, so with the type of stroke I had which and I’m thankful that I do know why I had a stroke, because there are lots of people who don’t I did. So I’m in year three, three and a half years now. I did go every six months for scans of my neck and my head and my my stomach, because they want to make sure all the major arteries they’re staying.

Bill Gasiamis 21:14
In good working order.

Tara Miller 21:16
They’re in good working order. So I do have a vascular specialist that I do see regularly on top of the neurologist, yeah, and I’ve had, you know, in my recovery, I was, you know, hopping along, doing okay, cuz recovery is the first year for me, is, I think just I don’t even know what to say about the first year. To be honest with you, I think I was in denial.

Bill Gasiamis 21:51
You couldn’t accept that.

Tara Miller 21:53
No, I joined a lot of peer support groups through March of Dimes. That’s where I’ve met a lot of my stroke survivor friends. That’s how I found out about you, obviously, through my my friends. But I thought I was going back to work in January. I thought I was getting my license back. So many things, and it’s 3.5 years and I’m not back to work because of my cognitive deficit. I just got my license back last week. Congratulations. Thank you. It’s quite a milestone. Mm, but the the brain fatigue is a new level, a new level with driving.

Bill Gasiamis 22:42
So much to concentrate on. And, oh, your brain gets overwhelmed.

Tara Miller 22:47
It does. It does get overwhelmed. But I’m very thankful I have my license back.

Bill Gasiamis 22:52
It’s short trips now.

Tara Miller 22:56
Yeah, I just.

Bill Gasiamis 22:59
And it’ll come back, it’ll improve as you start to build up the muscle again of driving, and it should be less and less fatiguing, but it makes complete sense the sensory overload from driving so many things you gotta pay attention to, all at one time.

Tara Miller 23:18
It is my naps are much longer. My naps are much longer now with driving.

Bill Gasiamis 23:27
When do you find you need to do a nap, like, what time of the day?

Tara Miller 23:30
I nap about anywhere between like one and four. I used to be able to nap for just an hour, but since driving, I would probably do a two to three hour nap, and I will still go to sleep just fine tonight.

Bill Gasiamis 23:53
On the right time as well. Yeah, wow. That just goes to show how much you need that nap to just get you past that fatigue that driving has caused. I love that, though, because it’s the perfect way to continue the rehab. We’ll call it rehab, right? It’s driving, but we’ll call it rehab because you’re driving, you’re doing something really hard for your brain, you’re putting it in a difficult situation, you’re fatiguing it, you’re tiring it out.

Bill Gasiamis 24:20
And then you give it what it needs to rehabilitate, to rest, to recuperate, and then you’re back at it again, and you feel recharged, and it helps you get through the rest of the day.

Tara Miller 24:32
Absolutely, absolutely I if I don’t nap or rest, there my husband can tell, I can tell, it’s, it’s not good. It’s, I do. I’ve had many strokes since my my stroke, and I think one of them was because I was. Overdoing it, but one of them actually just came out of nowhere, and it was as a stroke survivor. I was on the road to recovery. I was in year two. I thought everything was going fine and dandy.

Tara Miller 25:17
I was kind of feeling really good understanding this new path, understanding you’ve met Doug, understanding 2.0 trying to get to know her, and then, boom, I was hit with a mini stroke, and I thought, wow.

Bill Gasiamis 25:35
Just hard to accept.

Tara Miller 25:40
It was at first because I was just like, Why? Why? I don’t understand. I’m doing everything that I’m told to do. I’m following everything like I I’m just, I just don’t understand, why? Why? Me like I’ve already, I’ve already been through this. Why is this happening again, and why a mini stroke? So luckily for the support groups and the peers, it’s normal. And I was like, Okay, I guess it’s normal to have these little tias when you least expect them.

Bill Gasiamis 26:25
So, it’s just common. It’s common. It does happen normally. I don’t know about normal, but common. Yeah, and it’s a lot of people describe. There’s often a number of events afterwards. Sometimes there people have events that are kind of false alarms, but then also sometimes there are actual events. I was in a similar situation. My first two happened within six weeks of each other, the bleeds that happened in my head.

Bill Gasiamis 26:54
And then the next one happened, you know, a year and a half later, and it was the biggest setback, because that one there required brain surgery and then learning how to walk again and everything so that you do, you go through those ups, downs, then you go through, like, big ups, and then you go through downs. That’s kind of my journey was very jagged. It was not a straight line, that’s for sure.

Tara Miller 27:21
Yes, that’s you’ve explained that well. But I think because I was so up, it just it. It did bring me so down. And I think with the TIA, I felt my my speech did step back a lot. My aphasia comes out when I’m tired, or my speech is delayed when I get tired, and still to this day, but a lot of people don’t notice it because, well, they they do notice because I will start talking like slower or more delayed. But I found after the first Tia, or maybe the second one my speech did step back.

Tara Miller 28:25
So it was like I went to two feet forward, or two steps forward, and then 10 steps back. So like you said, that was a big adjustment for me, but now, because it’s been that was in 2003 that I had, Tia is and now it’s 2025, I’ve learned to just go with the flow. And I, I was a high, tense person pre stroke. I’m a calm person. Now, I wouldn’t say I’m like a hippie calm person, but I’m calmer, like there’s an improvement, there’s a huge improvement. So I can’t, I can’t let the little things bother me.

Bill Gasiamis 29:23
So you know this Tia that you experienced. Did you know that was happening, at least? Was there a warning sign? Did you do something about it?

Tara Miller 29:32
The first TIA, I did call 911 and I know I’m supposed to call all the time, so I’ll leave it at I do call 911, now, yes, I do. I’m supposed to check my blood pressure frequently because I have low blood pressure. So if I’m having a stroke, it will go very high, mm. Mm, so that day that I had, when I have my tias, they mirror the exact symptoms I had when I had a stroke. I have right side paralysis, I get dizzy, my vision gets blurred, and I have high blood pressure, and in both, in, in all the instances, like I can’t stand, like, because my whole right side is paralysis.

Fibromuscular Dysplasia And Stroke Follow-Up: Monitoring, Not Intervention

Bill Gasiamis 30:33
Okay, so, so what did they do to support the blood vessel that had dissected. Did they put a stent in there? What did they do with it?

Tara Miller 30:47
They just watch it okay, and you’re on. There’s been, there’s been no change in three years. So the big stroke was from my neck, and they won’t do anything like they’re just watching it, but there hasn’t been any change. The mini stroke was an artery between my brain and my skull. I can’t do anything.

Bill Gasiamis 31:23
Okay, so it was a new location.

Tara Miller 31:26
A new location. So they will, so I do go for scans yearly to make sure that one’s not doing anything. And then they also check my stomach. But, yeah, new location.

Bill Gasiamis 31:42
I see, okay, so you’re on a kind of like a regular scan, a regular, hospital visit, so that you guys can just keep everything monitored.

Tara Miller 31:57
Yes.

Bill Gasiamis 31:58
Okay.

Tara Miller 31:59
I’m very I feel very fortunate. I have a vascular specialist, and I have two neurologists, one that I see regular and then one that I asked to keep because he was the one that I saw at the hospital that I stayed in. The other neurologist. I was the one neurologist suggested me to. So he’s a top neurologist in in Ontario, like in Canada, so he’s a little farther away, but, like, I go to him every six months.

Bill Gasiamis 32:42
Yeah, so you know that idea of needing help and connecting with the stroke support groups, what was behind that? What were the issues that you needed to, I don’t know, get your head around and therefore you needed to connect with other stroke survivors.

Tara Miller 33:07
Actually, I didn’t even know there was programs available. I was at rehab after my stroke, and I found a poster that said Young stroke survivors. So I called or emailed.

Bill Gasiamis 33:25
Did you think you were young at 46 Yes, yes, some people think they’re old. Good. You at least thought you were young, cool.

Tara Miller 33:34
Well, young stroke survivor. I thought I’m a young stroke survivor, yeah, when I think of his when I and hopefully noone takes offense to this, because now that I’ve been open to the stroke worlds, I mean, stroke, strokes do not discriminate, they hit any age. But when free stroke, when I think of strokes, I thought of the movie. Oh, what movie is it? You know, with Brad Pitt when he’s in, his name’s Tristan, and his dad has a stroke.

Bill Gasiamis 34:15
Maybe someone can tell us in the comments. I don’t know, but you think of old people I know do 20 year olds Think of us as old people?

Tara Miller 34:24
Definitely. Well, I would think so. I think my daughter thinks I’m old and she’s 26.

Bill Gasiamis 34:32
Yeah. So when you get to 46 or 50 like I am, we’re still young, and we feel young and we are young, because the average age of an adult human being somewhere around 80 or something, or more, or the expected living age, I beg your pardon. So, yeah, I agree with you. I think we’re young.

Tara Miller 34:57
We’re I think we’re young to have strokes.

Bill Gasiamis 35:00
That’s it even more specific there, yep, okay.

Tara Miller 35:05
And I think, I think this poster said working age, young stroke survivors, working age. So I think that’s what caught my attention. Because I think a lot of people, and again, now that I’ve I’m a stroke survivor. It helped me. I wanted to to reach out to other survivors in and around my age to understand. Well, how are you coping? Mm, How are you coping with no license? How are you coping not going back to work? How are you coping with a teenage daughter or a young a young daughter, a young adult daughter, and now and now you’ve had a stroke?

Tara Miller 35:53
Because there’s some, there’s some peers that are retired. So some of the stroke stories are, well, I was retired when I had a stroke and I and I want to hear your story, but I don’t relate with you completely. I’m you’re at a different you’re at a different stage. I’m not retired yet, and I shouldn’t be retired yet. I’m like, I’m only 50 now. I had a stroke at 46 I still had 20 years of work, 20, and I’m not good with math, so let me do the math on that. And like math. Oh, I didn’t. I actually didn’t realize, and I laugh at it, how stroke could affect because I had a left side stroke.

Tara Miller 36:46
Math is gone. All gone. So when we talk numbers, I mean, I can add two plus two, but if you, if you, if you showed me like a spreadsheet, even a spreadsheet I did because, I mean, I did payroll, I would be amazed. I would be amazed by it.

Bill Gasiamis 37:11
So I know what you mean. I mean, I have a problem with maths, and it’s not the standard numerals and all that kind of stuff. You know, adding things, simple things. In my business, I can put quotes together, and I can develop a price for somebody. But if you give me something like a spreadsheet, I think it’s the again, I think it’s the sensory overload, like it actually triggers me. And I don’t normally get triggered by almost anything. I remember being in a meeting when I was when I wasn’t working in my business.

Bill Gasiamis 37:46
I had three years where I was working in an office, and the guy that I was working for was actually a friend of mine, and he was in charge of this particular department in this organization. And this guy is a numbers genius, like he’s a number savant. He can look at a spreadsheet and make it sing, and we’re sitting in a meeting, and he’s explaining to the team about this spreadsheet and how we’re going to use it, and all this kind of stuff. And I’m looking at it and it doesn’t I cannot gleam from that spreadsheet that it is going to.

Bill Gasiamis 38:20
I am going to be able to do what he said with that spreadsheet, just the amount of data, the numbers, was overwhelming, the lines, the brightness, the font, you know, like every single aspect of it, it was just completely overwhelming. I’d never felt overwhelmed to that extent before. I resigned on the spot that day. I said to him, this is the last day of work for you, because I cannot do the kind of work that you ask, because I cannot comprehend a spreadsheet with that much detail.

Bill Gasiamis 38:50
I physically cannot comprehend it my brain, and I know brains don’t have sensory neurons, but my brain hurts when you show me that spreadsheet, and you tell me to get information from it. It’s not possible.

Tara Miller 39:07
I know my mind is blown when I look at spreadsheets these days. And I used to build them, I used to do them, and I’m like, blown, and I can do simple math, but other math, I’m just like, oh, payroll, it’s and that’s why, obviously, I I’m not working at job I was doing before, because, like, I can’t.

Bill Gasiamis 39:33
If you give yourself some time to work out, say, a calculation of how much change you might get, you know, one of those basic calculations, how much change you might get from buying a loaf of bread, a carton of milk and all that type of thing. Are you able to do that?

Tara Miller 39:52
No, even you just saying that to me, like, I’m starting to get like, anxious.

Bill Gasiamis 40:00
Isn’t it interesting? Anxious? You said that. That’s what I felt, and that made me walk out of my job on that day.

Tara Miller 40:08
That made me anxious.

Bill Gasiamis 40:09
Wow, yeah. So, thank God for well, the supermarket machines that just work it all out for you, and you don’t have to think about it or worry about it.

Tara Miller 40:22
Well, exactly because I wouldn’t be able to make change there’s now when, when you were in the hospital, did you have to draw a clock?

Bill Gasiamis 40:35
I did once I did in my neuropsychological assessment, I definitely did, yes once, and I passed that one, I had no trouble during the clock. And I know where you’re going, so I’m going to ask you in a sec. But I think what they’re testing is to work out whether or not you have all of the left side and all of the right side of your brain’s functions. What was your test like? Sorry, to laugh. Because about an hour.

The Clock Test: A Stroke Survivor’s Recurring Challenge

Tara Miller 41:06
Definitely laugh because, like, the clock with the hands, like my, my kids would probably never be able to do it, because there’s not a lot of clock with hands anymore, but so in the hospital, I failed terribly. Well, that test came up again because I had to do the driver’s rehab assessment. I had to go through a rehab Assessment Center before I went to get my license. And it came up again. And I thought, What is this really coming up again? And I did get the big hands right, but I did not get the little hands right.

Tara Miller 41:45
And I thought to myself, this test is going to follow me around, and it’s and I cried in the hospital. I can remember well in the hospital. I mean, I didn’t do well on a lot of things, but that was like a few days after my stroke, but last two weeks ago, they were like, okay, draw a clock. And I looked at her and I said, What? Draw a clock with hands like this. That is my nightmare. So that’s why I have to pose a question, did you have to draw a clock? Because now I need to know, and I can’t remember if I drew a clock for my neural assessment, so I’m going to start practicing.

Bill Gasiamis 42:32
Yeah, maybe because if it keeps coming up.

Tara Miller 42:38
I did pass it, because I did get the main idea of where it all goes.

Bill Gasiamis 42:45
The numbers right. So you put the numbers. I didn’t get the numbers right and in order.

Tara Miller 42:49
I did get it right. I didn’t get the little number right.

Bill Gasiamis 42:54
So when they told you make eight o’clock, for example, you found the 12, but you couldn’t make the eight.

Tara Miller 43:01
Yeah, it was, No, I got the big numbers. So I got 3pm but I didn’t get like, 315 because then what happened? What happened is my payroll brain clicked on, and then I was like, I clicked into, like, look at it as a quarter. So I didn’t look at it as a clock. I looked at it as at a quarter. So yeah, it’s and she said, yeah, you passed anyways, like, I did get a point off for not getting the little hand.

Bill Gasiamis 43:32
But was not enough to restrict you from your license.

Tara Miller 43:39
That was just one part of the test that was just one question of the test. It’s a very in depth it’s a very in depth test, and it, I’m glad they do it, just because, I mean, I did have my license suspended for medical reasons. And, I mean, we did lots of brain brain tests, but I just can’t believe that one came up. Yeah, it was just like, oh, the hospital again.

Invisible Fibromuscular Dysplasia and Stroke Deficits and the Power of Peer Support

Bill Gasiamis 44:12
But sounds like you’ve had a bit of a turn from, you know, all the difficult times, the tough times and all that. Sounds like you’ve kind of shifted your mindset. Was there somebody that you met that encouraged you or that made a difference for you? How you know? When does that turn happen? How do you describe that?

Tara Miller 44:35
I think it’s a combination of all the people I’ve met and all the different groups. They’ve all their stories, all their milestones, the sadness and the happiness, just sharing our stories, sharing our updates, our happy stories, our sad stories. I think that helps me get through. I was explaining to my husband just the other day, actually, that there’s not a day that goes by that I don’t think about the stroke, and I don’t think he realizes that, like, there’s not a day that goes by.

Tara Miller 45:19
And he is an amazing caregiver. He’s been my number one supporter, my daughters, my family, everyone, my friends. I’ve been very fortunate, because I’ve actually heard like such sad stories, and I’ve been very fortunate and I’ve met amazing peers that have also had their ups and downs, but they’ve supported me and I’ve supported them, um, but I’m not saying it’s been an easy road. I I like my deficits are invisible. And it’s like that famous comment, oh, my God, you look so good. It’s almost in our groups, it’s we, kind of, we laugh at it now, because, thank you. I know.

Bill Gasiamis 46:12
It’s a cheap consolation prize. It’s not really anything. It’s not meaningful to hear that. I know it’s not intended in any way to be negative. I totally get it.

Tara Miller 46:26
No, it’s not. It’s actually supposed to be very thoughtful and an amazing compliment.

Bill Gasiamis 46:33
Yep, and uplift.

Tara Miller 46:34
But it’s in our groups, and that’s why we on in our groups. We’re always like, Oh, it’s the other Oh, you look so amazing. Yeah, my brain doesn’t though my brain is is like, so for me, I honestly, I can’t get sad about it. It is what it is and but I mean that in a positive way. I’m not looking at the stroke as being a positive thing, but I have to take the recovery positive. My life has changed, like I’m not the person I was. I can’t be that person is, is is kind of gone. I’m not fully, you know, as Doug says two point like, I’m not tear 2.0 yet, I’m still learning her.

Tara Miller 47:28
But I’m doing things now that I probably wouldn’t have done if I didn’t have a stroke, like, what? Well, I started horseback riding again, and I’m not, yeah, I know I do have medical clearance to do so I wouldn’t just jump on a horse. I mean, I haven’t ridden a horse since I was 19, and that 49 I’m like, let’s do this. Let’s do this, and I love it.

Bill Gasiamis 47:59
I bet.

Tara Miller 48:00
I’m not going to do anything silly, like, I’m not going to I’m not going back to the riding I did as a young like a child, early, early adult. But even just getting on the horse and walking and trotting. I mean, it’s, I love it, like my husband says, I’ve never seen you smile so much, and I don’t know if I would have taken that up again. If you’d asked me five years ago if I would pick up horseback riding, I would probably be like, No, I’m too old for that.

Tara Miller 48:33
And now I’m like, Yeah, I go horseback riding once a week. And I’m not like, I just, I love it. I I, and I’ve always wanted to learn how to knit. So I go to a knitting club or, yeah, I feel I want to knit.

Bill Gasiamis 48:57
Well, it’s so cool, it’s so useful and practical.

Tara Miller 49:01
Yeah, I want to knit blankets. I don’t know. I mean, I have enough blankets in the house, but I want to knit. And I think five years ago, I wouldn’t have taken the time to learn how to knit. I’ve asked my mom to show me, but it’s that’s a little different. Having someone you know, teach you, I think is very difficult, but I’ve learning to knit. I volunteer at the on the stroke ward at the hospital where I had a stroke. And I’m not saying I don’t know if I would have ever volunteered, but I enjoy it. I still haven’t found the word I want to use, but the way I explain it, it humbles me.

Bill Gasiamis 49:52
Yeah, it’s rewarding as well. Is it?

Tara Miller 49:55
Well, that’s it. It is really rewarding for me. It’s it. It’s like, I, I’m, I’m, it is, and that’s, I’m trying to find another word, because I don’t like how many strokes that are happening, yeah, like, it’s, it’s, it’s so sad. But I I say that we’ve all been invited to this. It’s an invite only club, even though we didn’t want the invite. Yeah, we’re here anyway, so we have to make the best of it.

Bill Gasiamis 50:34
Yeah, volunteering is really cool. I did that early on as well, quite a bit, yeah, probably the first three or four years and and then after the brain surgery, was a little bit harder to commit to volunteering. Just recovery took a bit longer than than I needed or wanted. And then not long after that, it was hard to get away from work, because I got back to work and then COVID. But volunteering was always supportive of me as well as that other person. That’s what I found. And my volunteering was for the Stroke Foundation.

Healing in the Saddle: Tara’s Journey with Sierra

Bill Gasiamis 51:09
And we were raising awareness, and we were meeting other stroke survivors, creating a community people I still catch up with and see. You know, 10 years later, because of that, and it’s really, it’s really rewarding. And like you, I don’t think I would have done any volunteering before stroke. I just wasn’t in that frame of mind. It wasn’t something that I thought was necessary for me to do. I understood the value of it, but I just didn’t think it was something for me.

Bill Gasiamis 51:40
So I like that you’ve taken up these, what old passions that you let go of because you got busy with work, being a mom and all that type of stuff, and now you’re thinking, Well, what have I got to lose or go horseback riding? Is it easy to access to get to a horse riding club from your place.

Tara Miller 52:03
Oh yes, I live in the country. Oh yeah, yeah, I live in the country.

Bill Gasiamis 52:07
And you get to ride the same horse every week, or is it a different horse?

Tara Miller 52:13
It’s funny. I met my instructor actually had a brain injury, so we’re perfect for each other, as far as I’m concerned. And her horse, Sierra was like, literally, my my soulmate horse, and she was the perfect horse for me to ride. She’s just she, she’s just an angel. And it was like meant to be for for me to be her, her rider, and she had other other students, but it was the perfect horse for me to learn how to ride on again. And we were doing well.

Tara Miller 53:00
And we were, we were actually getting ready to practice for a possible horse show, just walk, trot, horse show this May and in January, unrelated to stroke, I had just real weird stuff happens to me. I had a cleft lung Just out of nowhere. Yeah, clefts a partial collapse lung, and then pneumonia. So, yeah, it’s very bizarre, very bizarre. Out of nowhere, and I had to take, obviously, several weeks off. And so my horse, Kiera, then we found out that so she has some leg problems, and I don’t really, I don’t know the medical term, but she has retired.

Tara Miller 54:00
She had to go into early retirement because of her legs are not getting better, and it’s just like I was broken and then she was broken. So that’s my story about Sierra, who literally was my sole horse. And I’ve ridden a million horses. I’ve loved a million horses. I’ve had horses, but Sierra and I, we were meant to be together for that short little stint. Yeah, from and she’s going to be as her her mom says, pasture potato now, yep, and she deserves to be beautiful horse.

Tara Miller 54:40
So now I’m going to be riding Scarlet, because I don’t, I’m, I’m of the age in the and I’m delicate where I can’t just get on any horse, yeah. Um, so that was a great question, but Sierra and I, we jived like she knew it was me on her. Yeah, and it’s very heartbreaking, but we, I mean, I’m, I’m heartbroken, so you can imagine what her mom is going through after having her for 13 years. But I’m now riding in scarlet. Is an Arabian horse. Beautiful, beautiful face. So I’ve only ridden her once because I had to take some time off. Do you do my collapse?

Bill Gasiamis 55:28
Yeah, tell me about that. What’s also, what about, how does that even happen? And how do you collapse lung?

Tara Miller 55:34
Well, I was horseback riding, and that’s not I already had it. The collapsed lung had already been there, and I was just out of breath. And I said to my instructor, I feel like I am out of breath a lot more. And she said, yeah, you seem barely out of breath this time. And then I just went to an urgent care and I thought I had pneumonia, and they said, No, your your your chest is clear, but go get an x ray like something’s going on.

Tara Miller 56:09
And then they called me, and they said, Yeah, you have a partial collapsed lung. Go to the hospital. So I went to the hospital and waited and waited and waited and waited, and the doctor said, yeah, you have a partial collapsed lung. We need to do chest tube.

Bill Gasiamis 56:33
To reinflate it.

Tara Miller 56:35
Yeah.

Bill Gasiamis 56:36
Wow.

Tara Miller 56:37
It was horrible.

Bill Gasiamis 56:38
Did you have like, a rock bottom moment. Did you get to the stage where you’re thinking, oh my god, what is going on? This is really. Was there a moment like that? No, no, that’s all right. That’s good.

Tara Miller 56:50
I was just like, really, really, like, I’ve gone through one major throat, stroke, three tias, one hospital stay like, or like, two hospital stays. Now collapsed lung, it’s partial collapse lung. And then a week after that, then I had pneumonia, which I got from the collapsed lung, or partial collapsed lung, but they said they don’t know why or how I got it mostly come like that type of collapse, long comes from very tall, lanky men that are runners and I’m like, I’m Five two, I’m not lanky, I’m not a man, so help me out here, like we got nothing.

Bill Gasiamis 57:48
That’s an interesting explanation to give to somebody that’s the exact opposite of all those things.

Tara Miller 57:53
But the exact opposite. So I was like, Okay, I’m gonna go on my way then. So luckily, I didn’t have to my my lung did reinforce, and I did not have to leave the hospital with the test tube, chest tube, test tube. So I’m happy for that. I do not encourage anyone to get a chest tube. I did not know what it was going to feel like. It’s not something I recommend. It’s horrible. But I just, I went with the flow.

Bill Gasiamis 58:32
What do they do? Put a hole through the front of your chest, into your lung.

Tara Miller 58:36
In this side.

Bill Gasiamis 58:38
My gosh. I actually have never seen through the ribs type of thing.

Tara Miller 58:42
Correct. I’ve never seen a chest tube be inserted, prior to this, this little incident, and since then, I’ve seen it done maybe five times on on medical shows. And I’m like, oh, and it’s, it’s not it’s it does hurt. There’s nothing they can really give to you that really stops all the pain.

Bill Gasiamis 59:09
It’s always feel it right. Okay, so you’ve had quite the journey. How have you changed, not just physically, but also emotionally and mentally. How do you see yourself these days?

Tara Miller 59:28
I think I’m happier.

Bill Gasiamis 59:32
I do. That’s not what I was expecting you to say. That’s cool.

Tara Miller 59:38
I but I have my moments.

Bill Gasiamis 59:41
Everyone does, right, but you’re happier, generally, happier and calmer. I am. That’s a great I am happy to arrive to what are you happy about?

Tara Miller 59:53
I just I don’t take life for granted. I don’t take anything for granted anymore. Mm, I, you know the sayings top smell the flowers like I literally do. I stop and look at birds on my walk. Mm, I never thought I’d stop and look at birds, but I do, because they’re pretty, and that’s something in my previous life. I don’t think I ever would because I didn’t have the time, because I was Go, go, go. And the stroke, just it.

Tara Miller 1:00:29
It stopped everything. It put me in my like, it just it, well, it scared me, scared everyone. It’s scary. It’s but it, I didn’t die. I could have died, but I didn’t. I was given, I look, I was given another chance.

Bill Gasiamis 1:00:51
Sounds like it’s changed you in a very meaningful way, this experience that you’ve had with your health the last few years.

Tara Miller 1:00:59
I think it has. I wish little things would stop happening. Like, I don’t need a partial collapse long again. No one needs that. Yeah, we’ll just like, I don’t need those. Like, I do have to work. I do have to work at when I go out. I mean, I do rest up for functions. There are behind the scenes stuff, as you probably know, to get ready for big functions or just to go out. I do prepare. I do prepare when it’s time to go horseback riding, like I will sleep the day before, little longer, or I’ll rest the day before I don’t, I try not to do back to back stuff because I can’t.

Bill Gasiamis 1:01:45
Yeah, can relate to that.

Tara Miller 1:01:48
So there’s a lot of behind the scenes to make something happen.

Bill Gasiamis 1:01:55
And then usually the next day after horseback riding, is that a rest day as well?

Tara Miller 1:02:00
Yes. Actually, even after horseback riding out like my naps are closer to four hours.

Bill Gasiamis 1:02:07
Yeah.

Tara Miller 1:02:08
It’s, but it’s exhilarating while it’s happening, and then it’s nap time.

Bill Gasiamis 1:02:17
Have you noticed that improving that nap times are changing that they’re are they sometimes not even needed naps, or are they always needed?

Tara Miller 1:02:27
Still, they were improving, definitely improving, where I could probably just go have a quiet, you know, lie in the bed and just have quiet time until I got my license, and now I’m back to I need them.

Quieting the Mind: Tara on Naps and Brain Fatigue

Bill Gasiamis 1:02:45
Okay, so you’re starting to put your brain in a little bit of discomfort by going for a drive, and it’s going, alright, I need a rest. Now, you know, there this whole discussion around naps reminds me of the kids when they were little, you know, and then suddenly they don’t need to nap anymore. And what do you mean? You don’t need to nap. You do need to nap. You’re going to be grumpy at the end of the day and them insisting that I need to nap, and then me insisting, and my wife insisting that you have to nap because now you’re ruining our plans for the day.

Bill Gasiamis 1:03:18
Or we we were used to your napping routine, we would get some quiet time. You know, it reminds me of those conversations when I was talking about friends with friends and family, about kids nap time and how it’s changed, and how they eventually stopped needing it. But this kind of reminds me of a similar thing, where you have a lot of need now, but as the years and time progresses and the healing continues, that it should get less and less, but it doesn’t seem like you mind napping. You seem to quite enjoy the opportunity to go and have a rest and a nap.

Tara Miller 1:03:55
I do, especially if I’ve had a big day out or something and naps were getting better and not needed, as much like you said, until I started driving and I noticed a huge I do need to at least go lie down or a quiet time, listen to relaxing music, spa music, just to quiet my head.

Bill Gasiamis 1:04:21
I know now for me, sometimes it’s probably a nap is probably not necessary, but that just lying down and listening to chill music or something like that dark room is enough to recharge the brain battery. And I really do look forward to it as well. And I love having nothing to do after something eventful, whatever it is, whether it’s going to the football or going to a concert or going out on the town, just enough to have nothing to do afterwards, just to chill out and it’s kind of like my time to decompress and appreciate.

Bill Gasiamis 1:05:00
At what I’ve just seen and done and reflect on it, instead of getting onto the next busy thing and going and going and going, is there something that you so the stroke survivors watching and listening, they’re probably not at this stage of your journey, or they might be Before this stage. What would you like to say to them about the journey and about stroke recovery?

Tara Miller 1:05:30
The journey is, well, I’ve I’ve said this to the survivors in the hospital, that it’s a slow process, and I like to say, and sloth is one of my favorite animals, along with horses, cats and dogs and dolphins, like just sitting with you, but and all of them, and all the animals, oh yeah, birds, birds are my favorite too. But it’s, it’s, it’s a sloth, sloth space, it really is and you can’t make it go faster, and you have to go with the flow. And every and every journey is different. Every stroke is different, every journey is different, and to have patience. I never had patience.

Tara Miller 1:06:24
I think I have more patience now than I’ve ever had before. My older daughter has said, You’re not the mom, you’re not the mom you were to Abby than you that you were to me like you’re different mom, and I’m like, I’m a different person, though, and it’s of no fault to my own. Like, I’m sorry that I’m different. It’s different times. And she’s like, Abby gets away with everything. And I’m like, Well, I have to pick my battles. I don’t right. Like, I was more uptight then I can’t. I don’t care that Abby’s room is dirty like I don’t I did when Alex was young.

Tara Miller 1:07:08
So that’s just an example. I picked my bottles now, when you’re raising kids, because I can’t let the little things bother me like I did the stroke recovery is, is kind of my first priority. I know it’s hard to say, Yeah, but I do. I do put myself first. Yep, the recovery is first, and it’s slow, but it can be, it is rewarding. The milestones are rewarding. And there’s good days, bad days, happy days, sad days. But you just, it’s an invite only club. Even though you didn’t want the invite, you just, you have to accept it and go with the flow.

Bill Gasiamis 1:08:02
So it sounds like your child is noticing the different in your behavior and then is comparing, as all kids do, comparing themselves to how you treated one sibling as opposed to the other one, and is going, you should be stricter on the other sibling of mine correct to even out the playing field so I can feel like I got a little bit of revenge back, or some equality in treatment or something. I totally get that from a kid’s perspective.

Tara Miller 1:08:35
Well, they’re 10 years apart.

Parenting Through Fibromuscular Dysplasia and Stroke: Missed Moments and Long-Term Understanding

Bill Gasiamis 1:08:39
It’s completely different times, yeah, but they don’t understand that.

Tara Miller 1:08:43
No, and I mean, I’m, I’m a little easier on I just, I feel when I had my stroke, was it a very imperative time for my younger one. She just turned like she was starting grade eight, crucial time for a young girl like needed her mom to drive her here, there and everywhere, and then, boom, her mom’s in. I felt like I was in bed for one year. I literally felt like all I did was lie in bed and order Uber Eats.

Bill Gasiamis 1:09:21
Yeah, yeah. I remember missing out on stuff that we should have done, quote, unquote, should have done with my youngest as well, camping, fishing, that kind of stuff that we just couldn’t make it happen. And now that they haven’t happened, he’s 24 trying to get him into the zone, to come to an event with me so I can relive something I should have done with him 10 years ago, like it just doesn’t happen. But I totally get where you’re coming from, number one has to be you, because if you’re not well, then you can’t be.

Bill Gasiamis 1:09:59
But you can’t participate in your child’s life in any way, and maybe not at all. You might not be around. So what’s the point of that? You have to make a sacrifice. But when they’re little, they don’t understand the sacrifices that adults make. I remember my oldest son, who’s 28 now it would have been about three or four years ago, come to me and say he kind of had a deep realization as to what I went through and how bad it really was.

Bill Gasiamis 1:10:30
And it took him eight or nine years to get to that stage, to actually, you know, where he grew up, he became mature, and he had a different view on life. And he really kind of came to me one day and he goes, I think I just really understood now what happened and what you went through. So it’s kind of good that they don’t know that they’re a little bit ignorant the kids sometimes, and that they think you’re just being a mean mum, or you don’t treat me the same as the other one.

Bill Gasiamis 1:11:02
The usual kids stuff. That’s like, if it’s that, if we’re still at that stage in life where they still assume that they’re just being unfairly treated because they’re the most important what they want is the most important thing in the world. I think that’s a good space to be, but Oh, absolutely, it comes with a bit of a cost. That’s what I felt. And it sounds like you’ve experienced similar conversations where.

Tara Miller 1:11:29
Abby was home when I had the stroke, so she was a part of it. She was here. She was saw me. Her face looked just as scared as my husband’s, and I was kind of like, what is going on? Alex at school. Yes, so two different and Abby lives here. Abby deals with me, um, daily. She deals with mom recovering from a stroke. Alex does it so it’s Abby’s gonna get to have a messy room if she wants.

Small Wins, Big Heart: Tara’s Stroke Recovery Journey

Bill Gasiamis 1:12:15
And so Alex is dealing with the but you look fine version. Yep, didn’t see the ill part, the serious part at that time I hear, yeah, it makes complete sense. Hey, Tara, thank you so much for reaching out. I really appreciate you coming on the show and sharing the story, and I wish you well in your recovery ongoing. And thank you. Have a lovely time with your animals.

Tara Miller 1:12:42
Thank you. Thanks for having me, Bill. It was very fun.

Bill Gasiamis 1:12:46
Well, that’s it for another episode of the Recovery After Stroke Podcast. Some stories don’t end with a miracle moment. They unfold slowly, like Tara’s, through setbacks, surprises and small wins that all add up. I’d love to hear your thoughts on this episode in the comments. What part of Tara’s story resonated most with you? Let’s keep this space where stroke survivors feel seen, and if you want to go deeper, and if you want to go deeper, check out my book. The Unexpected Way That A Stroke Became The Best Thing That Happened.

Bill Gasiamis 1:13:19
If you’ve ever struggled with meaning after stroke, this book was written for you. You’ll find stories, tools and circuit breakers to help you shift. Check it out at recoveryafterstroke.com/book, to support the show. Hit the super thanks button on YouTube or join the Patreon community. And if something in this episode moved you don’t keep it to yourself, share it with someone who might need it, and remember, slow progress is still progress. See you in the next episode.

Intro 1:13:49
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 1:14:19
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 1:14:43
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 1:15:10
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 Collapse to Comeback: Tara’s Story of Stroke, FMD, and Finding Herself Again appeared first on Recovery After Stroke.

What Does Stroke Recovery Really Feel Like?

Recovery after stroke isn’t a straight line, it’s a winding, unpredictable journey that challenges not only the body but the mind and emotions. It’s easy to think recovery ends when rehab does. But for most survivors, that’s just the beginning.

There’s the grief of lost abilities. The confusion of waking up in a body that feels foreign. And perhaps most misunderstood of all, the kind of fatigue you can’t sleep off.

The Hidden Weight of Stroke Fatigue

Post-stroke fatigue is not the same as being tired. It’s deep, cellular. A kind of heaviness that sleep doesn’t fix. You can wake up exhausted. You can rest all day and still feel drained by evening. It doesn’t come and go; it lingers.

This kind of fatigue makes small tasks feel enormous. Putting on shoes. Taking a shower. Holding a conversation. Everything demands energy that your body no longer gives easily.

And the hardest part? It’s invisible. To the outside world, you might look fine. But inside, your brain is still working overtime just to keep up.

From Paralysis to Progress

For many stroke survivors, recovery starts with relearning: how to walk, how to speak, how to navigate a world that suddenly became unfamiliar. Whether the stroke affected the left side, the right side, or speech centers, it leaves an imprint.

Some people regain skills quickly. Others move slowly, step by step, using devices or therapy to support their progress. What matters isn’t speed, it’s consistency, compassion, and staying in the game.

When You Look Fine But Don’t Feel Fine

One of the most disorienting parts of stroke recovery is not looking sick anymore.

People stop asking how you are. They assume you’re back to normal. But maybe your hand still doesn’t work like it used to. Maybe stairs are still terrifying. Maybe your brain feels foggy by lunchtime, and you need to nap every afternoon.

These hidden deficits are real. They affect your work, your relationships, and your self-esteem. And they’re often the part of recovery no one talks about.

Tools That Support Recovery

Many survivors face mobility issues long after hospital discharge. One common issue is foot drop, where the front part of the foot drags or doesn’t lift properly. It can make walking feel awkward, slow, and even dangerous.

There are technologies that help, orthotic devices, functional electrical stimulation, and targeted rehab. For example, devices like Bioness can provide electrical signals to assist foot movement and improve gait. Some clinics even offer free trial sessions to see if they’re a fit.

The right tool won’t solve everything, but it can be a stepping stone toward greater independence.

Why Emotional Support Matters

Physical therapy is only one piece of recovery. Emotional support is just as essential.

Recovery can be isolating. Friends may drift. Work might not feel possible. Your sense of identity can blur.

That’s why connecting with others who understand stroke, not in theory, but from lived experience, can be life-changing. Whether it’s an online group, a local meet-up, or a comment section under a podcast, having a place to feel seen and understood is part of the healing process.

Final Thoughts: You’re Not Failing, You’re Rebuilding

Stroke recovery is slow. It’s messy. It’s frustrating. But above all, it’s possible.

If you’re still using a cane, still wearing an AFO, still struggling with speech, still waking up tired, you are not behind. You are rebuilding.

The fatigue, the grief, the tiny victories, they all count. And no matter how long it’s been, recovery is still happening.

Stroke Recovery and Fatigue You Can’t Sleep Off

Alyssa reveals the raw truth of stroke recovery: the fatigue, the grief, and how she’s rebuilding life after a stroke at 31.

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Highlights:

00:00 Alyssa’s Life Before the Stroke
05:17 The Onset of the Stroke
12:43 The Stroke and Its Immediate Impact
19:50 The Road to Recovery
28:44 The Heart Surgery and Its Aftermath
39:37 Life After the Hospital
45:28 Fighting Through the Pity Party After Stroke
59:46 Reflections on the Experience
1:08:49 Alyssa’s Coping Strategies and Daily Challenges
1:15:26 Fully Healed, But with Scars: Alyssa’s Message to Stroke Survivors
1:26:80 Introversion and Adapting to Social Environments
1:32:42 Support and Community Building
1:39:06 The Role of Podcasts and Personal Stories
1:42:54 Final Thoughts and Gratitude

Transcript:

Alyssa’s Life Before the Stroke

Bill Gasiamis 0:00
Before we dive in today, I want to thank Bioness for supporting this episode. Today’s conversation features one of their patients, but more importantly, it’s a story about resilience and recovery. This is not a paid testimonial, just an honest look at one person’s journey and the role technology played along the way.

Bill Gasiamis 0:19
Alyssa Van Steen was 31 when a rare bacterial infection attacked her heart valve, leading to a hemorrhagic stroke and eventually open heart surgery. What followed was months in hospital, re learning how to walk, speak, and function with her dominant side offline. This conversation isn’t about easy answers. It’s about the days that don’t get better overnight.

Bill Gasiamis 0:45
It’s about the kind of fatigue you can’t sleep off. And it’s about what it means to rebuild your life when the world thinks you’re better, but your body still knows the truth if you’re in it right now, if recovery feels heavy, endless or invisible. Alyssa story might be the reminder you didn’t know you needed. Let’s get into it. Alyssa Van Steen, welcome to the podcast.

Alyssa Van Steen 1:11
Thank you.

Bill Gasiamis 1:14
Thank you for being here. Tell me a little bit about what life was like for you before stroke.

Alyssa Van Steen 1:25
Life with before stroke, so I was 31 when it happened, and I was just working, and I don’t know, just doing my life. I think I was at a point where I was, I think in like, your 30s, you kind of know, like, okay, this is who I am now. And I kind of was, like getting that sense right before everything happened. So I was in a good place in my life, when things happen.

Bill Gasiamis 2:01
what kind of work were you doing?

Alyssa Van Steen 2:06
Just our local grocery store down the street?

Bill Gasiamis 2:09
Yeah, so very locally focused, focused in the community. I imagine that it’s pretty rewarding meeting the locals. Everyone knows you. You know them. Is it a small type of community? What’s it like?

Alyssa Van Steen 2:26
It’s smaller, but I’m still in Orange County in California, so it’s, I mean, it’s busy. There’s a lot to do and but the where I live is a little bit more slower and family driven. But yeah, the grocery store that I work at is the more sought out, I think, the sought after grocery store, so it’s busy, busy, yeah.

Bill Gasiamis 3:01
And what did you do to for downtime? Did you have some stuff that you did on a regular basis that you enjoyed doing, getting out and about? What? How did you occupy time other than work?

Alyssa Van Steen 3:13
So other than work, I am an artist, so I work with cut pieces of paper, and I’ll do like hand painted and at the mouth and and I did that as well for work as well. I was on the in the art department for my work as well. And so that was kind of like what I spent a lot of my time with as well, as well as gardening.

Alyssa Van Steen 3:46
I’m a big gardener, and yeah, I’ve transformed my yard, the front yard and the backyard, many times. So yeah. And then other than that, I love to walk my dog. Um, my dog’s a 75 pound dog, so I, you know, he needs a lot of walks. And I love to walk and so that is a, yeah, that’s where I was at, right now.

Bill Gasiamis 4:19
You walk dogs, you or you walk your dog.

Alyssa Van Steen 4:23
Oh, my dog, my dog, yeah.

Bill Gasiamis 4:25
But it’s if it’s a 75 pound dog, you’re not walking it. It’s telling you.

Alyssa Van Steen 4:32
no, he’s a good he’s a good listener.

Bill Gasiamis 4:39
Fair enough. So did you study the arts?

Alyssa Van Steen 4:44
I didn’t. I actually went to school to become a teacher, and I graduated, and I ended up kind of thinking like, Oh, that’s not really what I want to do. So I was like, Oh, I’m just going to do. Work, and I’m just gonna do my art on the side and garden and do my thing. And, yeah, that’s where I was at.

Bill Gasiamis 5:07
It was just like a hobby that turned into something that you were getting paid to do.

Alyssa Van Steen 5:12
Yeah, yeah, that’s pretty cool.

The Onset of the Stroke

Bill Gasiamis 5:17
So tell me. Do you recall the time when at 31 something went wrong. How did that day unfold? What happened?

Alyssa Van Steen 5:28
Yeah, so my stroke happened on Well, I guess all before everything happened, it was April 23 was the first day that I went into the hospital. So it was about a day and a day, maybe a day and a half, before April 3 that I I just kind of started to feel like I was sick. And I have had COVID before, and it really felt very much like COVID.

Alyssa Van Steen 6:03
I had body aches, I had chills, I had a migraine and no appetite, and I am someone that I have had migraines my whole entire adult life, where I’ve had anywhere from like three to four a week. And it was always under the under control, pretty much, where it was just kind of like, this is just what happens.

Alyssa Van Steen 6:31
Like, my mom gets migraines, and it was just like, oh, some people just have a more prom or, yeah, they’re just more prone to it and so, yeah, and so. But this migraine didn’t feel like any other migraine I’ve ever felt in my whole entire life. This was a migraine that I was trying to take, like, an ibuprofen, just to like help, and I was screaming and crying on my floor like I didn’t know what to do.

Alyssa Van Steen 7:14
So it was that evening that my mom took me to the urgent care to see what was going on. And Urgent Care basically just gave me a shot of ibuprofen and sent me on my way, and I could, like, barely walk in. It was so it was so excruciating, I don’t I never want to ever experience that type of migraine. It was, it was crazy. So when I got home, my mom was trying to get me to eat, and I just couldn’t.

Alyssa Van Steen 7:52
And so she ended up, like, having to, like, spoon feed me spaghetti, because I just couldn’t even, like, lift my arms. It was, it was weird, and that was the last thing I remember. I only I remember her feeding me spaghetti in the dark because I couldn’t take any kind of lights. And the next thing that I remember, I’m waking up in a hospital bed. Wow. So what had happened was my my blood pressure went super low, and I guess I was starting to scream and be incoherent, I guess.

Alyssa Van Steen 8:42
And that’s when my mom and my brother had to call for an ambulance, and they also were saying that my heart rate was very high. And so it was about two days in the hospital where we were just testing and testing like and we we just, we couldn’t figure out what it was, what happened, and I was still having like, constant migraines. It wasn’t that same migraine, but it was migraines, right? I started to have a bladder infection.

Alyssa Van Steen 9:22
My kidneys were failing. They were talking about it was possibly ms, it was just I was on oxygen. It was like I was then I was starting to go septic. It was just like, nuts, intense. And yeah, and so it it, it took a couple of days. No, it was, it was actually two weeks, but I was in the hospital and we found out what it. It. It was so basically, I had an infection that was attached to my heart valve.

Alyssa Van Steen 10:12
So it was a rare bacterial infection that went into my bloodstream and attached itself to my heart valve. And it was deteriorating my heart valve, and so it, it was, they were like, Okay, well, we can, we can get some strong antibiotics to help this, and we probably don’t have to go in for heart surgery or anything. We could probably just like, kill it on the spot.

Alyssa Van Steen 10:46
And so that’s what we were doing. So we stayed in the hospital. I was on antibiotics for a couple of times a day. Very strong. Was like, making my hair fall out. It was crazy. So that was, and they were kind of, they were kind of, now looking like, Okay, this is the problem. And then you’re also, you’re having many strokes, and there’s lacerations on your brain. So I was like, okay, so this is but they’re like, but we’re, we’re killing the and the the bacteria, so we’ll be okay.

Alyssa Van Steen 11:29
So it was a while, and then I had to, it was May 1. Is when they were like, Okay, you can go home. And what we can do. You still have to be on antibiotics for couple, like, another six weeks or something, but we can have a nurse come out and once or twice a day and do your injection and then, or whatever, or the drip, and you’ll be fine, like, you can go home.

Alyssa Van Steen 12:06
And we’re like, okay, so I’m getting ready, ready to go home. Um, we’re waiting to be discarded, discharged. And I went up to go to the bathroom, and I was like, and I was feeling better. I was starting to feel better too. So I was like, okay, like, I’m like, things are things are looking at. Wasn’t on oxygen or anything like that anymore. And so I went to go to the bathroom, we’re waiting for to be discharged. And I come back from the bathroom, and I was like, I feel kind of weird.

The Stroke Recovery and Fatigue and Its Immediate Impact

Alyssa Van Steen 12:43
And my mom was in the room, and she’s like, What? What do you mean? And I was like, I don’t know. Like, something’s weird, and I don’t know how to like, describe it. And she’s like, Okay, we’ll sit down. Let’s have the nurse come in. A nurse comes in. She’s like, kind of checking me out. All of a sudden, my whole right side gets super heavy, and I know exactly what it is. I was like, I’m having a stroke, and I’ve never had any type of scare with like, stroke or anything, but I just knew, like, I knew that that that happens with stroke.

Bill Gasiamis 13:18
Let’s pause for a moment, you’ve just heard Alyssa describe one of the hardest pivots of her life, from being days away from discharge to suddenly realizing she was having a stroke her right side when heavy, her speech disappeared. Her world flipped. If you’ve been through something like that, the suddenness, the shock, the feeling of your body no longer responding. I want you to know you’re not alone, you’re not broken, you’re rebuilding.

Bill Gasiamis 13:47
Now this is recovery involved layers of trauma, rehab and fatigue, and most people never see it. And like many stroke survivors, she faced something called foot drop, that dragging, uncooperative feeling that makes every step harder than it should be. If you’re dealing with that, there’s a device that might help the bonus system. It’s not fit for everyone, but there’s free one hour trial.

Bill Gasiamis 14:13
You can try No pressure, just a chance to see if it works for your recovery. You can schedule it at locations across the United States. Now let’s get back to Alyssa as she starts to make sense of the stroke, the Aphasia, and the first steps towards healing.

Alyssa Van Steen 14:31
And so, um, once they kind of were like, I said, I’m having this stroke, it was like gangbusters. Everyone came in. There was like people were moving me around. They and then they took me to to what do you call it? The I can’t think of it to test your brain, am I right? MRI? Thank you. Yeah, I remember going into the MRI machine. And I don’t remember coming out.

Alyssa Van Steen 15:04
And so I had had a hemorrhagic stroke, and it affected my right side. I wasn’t talking much when I woke up from my stroke, and a lot of this is like things that I’ve had to be filled in from my family members, because I don’t remember a lot of it. I remember bits and pieces of when you’re in the hospital, but you don’t remember it like it happened. And you it almost it remembers. I remember it in like, little seconds, here and there.

Alyssa Van Steen 15:48
But I can’t say that like this second happened before this one and then this one was it’s just scattered. So I wasn’t, wasn’t really talking. I could say like yes or no, but I couldn’t do much more than that. I couldn’t say my name when they after a couple of days, they were trying to get me to say my name, and I just said my birthday for and that went on for a couple of days as well, where I just what’s her name, November 17, 1991 just so There was that. And, yeah, so pretty. So that was, yeah, so it was, it was a lot.

Bill Gasiamis 16:47
What was going through your mind at the time. So before that, you’re having a migraine. They come, they go, no big deal. Okay, we’re going to a dark room. Bit of ibuprofen. Things settled down, but then you went on this ridiculously wild journey in that time.

Bill Gasiamis 17:11
And then at some point, the news is getting worse and worse and worse, and then you think you’re on the way out and back home, and then you have a hemorrhagic stress. What are you thinking? Are you able to comprehend? What is going on? Are you going? How the hell did I end up here? What? What’s going on in your mind during that time?

Alyssa Van Steen 17:34
I don’t think I really like clued in that this big thing happened until, like, maybe a week or two later, when I was kind of like, oh, this happened to me. I think also like, I and I was also transferred to a different hospital. After I went into the MRI machine, they transferred me to another hospital that was specifically for, like, stroke patients. And I just, I don’t know if it was a combination of, you know, because when you have a stroke, I feel like, when I woke up, my brain was like scrambled eggs, like it just didn’t.

Alyssa Van Steen 18:20
There was no like, way to, like, sort out what I couldn’t even say in my mind, like, what’s happening to me? Like, I couldn’t even say that. It was just everything was broken. Yeah, and I it took me a long time for me to be like, Oh, okay. Like, this is what happened. And I and I also had, and I had aphasia as well. So that was, like, really difficult for me to try to even try to talk, because it wouldn’t really come out.

Alyssa Van Steen 18:59
I would say, say things, and I could say, like one little thing, I couldn’t say, like a sentence, or I couldn’t even say, like three things, three, three words in the order, you know, I could only say, like, one or two things. So it was, it was difficult to, like, have my family talk to me and me communicate, respond, yeah.

Bill Gasiamis 19:30
So what was so sounds like, life after stroke changed dramatically, right? What was like? What was it like? What could you do? What could you not do? How did your body feel? What deficits did you have? How did it change?

The Road to Stroke Recovery

Alyssa Van Steen 19:50
Well, I couldn’t walk anymore. Couldn’t go to the bathroom by myself anymore. My whole right side was completely. Uh, numb and limp. So it was it, it wasn’t until so they also, they kept me, I, you know, I kind of went moving floors, ICU and different things and, and then they were like, I think because her age and the type of stroke that I had, they were like, you would do really well on a rehab floor.

Alyssa Van Steen 20:30
And so I was like, okay, like, and I remember, I do remember, actually kind of saying, like, I just want to go home. Like, saying something like, I just want to go home. And my parents were like, no, no, you’re going to go to the rehab floor, because this is going to be better for you in the end. So like when you do go home, you need to be able to have a little bit, like a leg up on your rehabilitation.

Bill Gasiamis 20:55
And your mom, did your mom promise to bring you food and feed you pasta while you were.

Alyssa Van Steen 21:03
Yeah, well, my family was really good, too. Also, like, a little bit about me. I’m terrified of any type of doctor’s office, so this whole thing was so already, the fact that, like, I had to go into on like an ambulance and I’m in the hospital, was traumatizing, yes, and so I’m so squirmish around like needles or whatever. And so the whole time that I was at the hospital, my parents made it a priority to like, no matter what, like, at least one person stays with Melissa, whether it’s just my parents or my brother, like there is one person that will be there with her.

Bill Gasiamis 21:50
Can I a little bit just be just sorry to interrupt? Can I unpack a little bit so my wife is not afraid of doctors and needles and all that kind of stuff. She doesn’t really enjoy needles, etc. I’m the opposite, right? So I love doctors because doctors make you better, because hospitals is where people go to help be patched up and fixed up and then sent home.

Bill Gasiamis 22:18
So my I don’t get how people are afraid of doctors, doctors, surgeries, hospitals. Are you able to unpack that a little bit and just give me an insight so I can kind of understand.

Alyssa Van Steen 22:30
I think, you know what? I think from my own experience, I can’t really say about like my family, that that were also going through with me. But for me, I think the the only times I would ever be in a hospital was when I would be watching my grandparents die. Okay, and so I’m like, this is where people die. Got it?

Bill Gasiamis 22:59
I completely get it. So I don’t I know that people have to pass away at a hospital from time to time, and that’s kind of where they end up. I get that, and I know what you’re saying. So it’s just literally, it’s like your experience probably also as you were younger, with older grandparents, and you have to go and see that and experience that.

Bill Gasiamis 23:22
Go through that process with them. Okay, yeah, I totally get it. Now I know exactly why. All right, let’s pick up on your in hospital. Mum’s bringing you food, and everyone’s staying with you. One person is staying with you all the time because of your experience, let’s and then what?

Alyssa Van Steen 23:46
So I was on the rehab floor, and we were doing rehab, and that’s, you know, there’s speech therapy, there’s occupational therapy and physical therapy. And the way that I it was set up in this hospital that they had a schedule put out for you the next the night before, and they’d say, like, 7am you’re going to have speech, and then at 730 you’d have so and you’re, you’re going, going, going.

Alyssa Van Steen 24:22
And I think because, also because I was younger, they were like, We’re gonna work her as much as she can. And I think when I got to the rehab floor is when I start to remember my memories. I don’t remember a lot from before that, but I also was starting to talk a little bit more when I was on the rehab floor, and it so I remember being like, I’m here to work. Like, this is like, no, bring it like you’re gonna if you want to.

Alyssa Van Steen 24:59
If you want to have me, like, two different PT sessions in one day, like, we’re going to do it. Like, let’s do it. Um, and I was so like, I get I’m just, like, so grateful for the the rehab floor and all of the people that work there, because, oh my gosh. Like it’s crazy. How much, how, how much knowledge they have to fine tune little things for every little need that you might have.

Bill Gasiamis 25:11
So you embraced it so there’s no denial of your condition, There’s none of that stuff. No resistance to what you needed to do, the hard work that was coming up, that you needed to do. You were just up for it.

Alyssa Van Steen 25:53
But I also wasn’t, you know what? It’s funny, because I really was just kind of focused on, like, right now. I wasn’t thinking, like, Well, when I go home, what’s gonna happen? Can I am I gonna walk when I go home? Like, I just didn’t even think about that. I was just so focused on, like, no, no. This is what’s going on right now. Like, let’s just focus on right now.

Alyssa Van Steen 26:14
Because I think I didn’t even there wasn’t there was a like, towards the end of my stay, there was a moment where I was like, wait, I can’t even, you know, my right is my dominant hand. And I was like, I can’t write with my I don’t, I can’t write right now, like, and I, that’s what I used to do for work, like write and draw and, you know, cut paper and like, I was like, I can’t do that. And I remember breaking down and like, and, yeah, it was, it was rough.

Bill Gasiamis 26:53
So one stage, the majority of the time you’re going day by day, it’s about focusing on the task at hand. I did something similar. I never once thought about what it would be like when I went home. When I went home, I was more capable than I was when I started rehab. I could walk and I could use my left arm again. They weren’t perfect at all, but they were I was still able to make breakfast and a cup of tea and that kind of stuff.

Bill Gasiamis 27:22
So all the usual stuff were okay. I couldn’t walk work. I probably couldn’t work. So I didn’t occur to me at all, not once in my head, like, I’m going to go home next week and I’m not going to go to work, I’m not going to do anything, I’m just going to be at home waiting for more rehab. I had a patient rehab to go through, but you’d you’d had that realization, it was like The what now moment like, how were you afraid that you weren’t going to rehabilitate further, that you were going to be at home. What was the, what were the thoughts or the concerns in your head?

Alyssa Van Steen 28:10
Yeah, because I was like, I can’t even go to the bathroom by myself, like, you know, like that didn’t like I even when I when I got home, like, I still didn’t, like, I could go to the bathroom, but I had to have, like, someone watch, like, kind of watch me walk in, make sure I’m okay. Like, it was not it, yeah, there was so much more to go that I think I was it. It’s better. I think it was better for me to just stay focused on, like, what’s going on today?

The Heart Surgery and Its Aftermath

Alyssa Van Steen 28:44
Because I think when I had that moment of like, wait, I can’t even write my name, like it, that just like, destroyed me. And so I worked and worked and worked, and I was also still being given the antibiotics for the bacteria in my heart, and it was not working. They were saying that, well, we killed the germ, but it destroyed that heart valve. So you’re going to have to have open heart surgery, and you’re going to have to have a valve replace.

Alyssa Van Steen 29:31
And so I was like, I think that day, I was like, it was like, I think I only had one more, one more thing on my to do list, and it was physical therapy, and it was at the end of the day, and one of my doctors came in and was saying, like, Yeah, this is like, this is happening. Like, we have to do it sooner rather than later. You are going to have a lot of restrictions and things that you can’t do once you have the heart surgery.

Alyssa Van Steen 30:10
You’re going to have to be on the cardiac floor for a week. You won’t be able to raise your arms, you won’t be able to push out of bed, you you and so there was so much in my head. I was like, I won’t be able to I have, I already have all these restrictions with losing my right side. I can’t even, like, do any I can’t do things. I can’t even get up out of bed. And now you’re I have more restrictions. And it was like, it was really hard.

Bill Gasiamis 30:44
Full on. So what kind of timeline did all this stuff happened? So from that crazy headache to the bacteria being found, and by the way, I still have to ask you about the hemorrhagic stroke, then the hemorrhagic stroke, and then the heart valve surgery. What’s, what was the timeline?

Alyssa Van Steen 31:06
So I went into the I went into the first hospital on April, in April, and my heart surgery was on June 7. So that whole time I was still in the hospital. So I was in the hospital for a while. And so, yeah, and I remember that day too, when they were kind of, they told me about the heart surgery, and I was really, like, distraught about it, and then, and I just knew I was like, I don’t want to go to physical therapy.

Alyssa Van Steen 31:39
And that was the first and only time I’ve ever said no to one of my therapies. And my mom was like, okay, when she was walking down the hall and she saw one of my therapists, and she was like, she doesn’t want to, she’s really distraught, like, she doesn’t really want to go. And she’s like, Okay, well, I’m gonna, I’m still gonna, like, peek my head in, in like, 3030, minutes and see what happens.

Alyssa Van Steen 32:03
And she peeked her head in, and she’s like, how are you feeling? And I wipe my eyes. I’m like, let’s go. Like, I was just like, Nope, we’re gonna go. And I ended up having the best session that day. I walked a lot more than usual. We did steps like it was just, and I think that was like, that was just like, one of the things that really, like, solidified in my brain that, like, you’re gonna have to work hard, but the payoff is going to be so much better.

Alyssa Van Steen 32:36
If you just keep going. And so I was just like, I think from, I mean, I was already in that headspace, but even when I was not wanting to do things, I was just like, you’re never going to say no to any of this now, like, I’m never going to say no to any of my therapies. I’m always going to try, because even even the things that you don’t want to do is going to benefit. You in one way or another, even if it’s the smallest amount.

Bill Gasiamis 33:08
I love that. It’s a great attitude to take into the next phase of your surgeries, of your medical interventions. We know what caused the heart valve issue. We know what caused the massive headache. It was the bacteria, what caused that brain hemorrhage.

Alyssa Van Steen 33:27
So the heart valve was not pumping enough oxygen or blood to my brain, and it is it caused me to have a stroke.

Bill Gasiamis 33:41
Did it cause an actual bleed in the brain? Yes, that’s so bizarre. How would it do that? I mean, maybe you don’t have the answer, but that’s okay.

Alyssa Van Steen 33:52
I don’t know. And it was also, I was, you know, it was also like the infection was in my blood. It wasn’t just in one place, so I don’t know if it was, yeah, I don’t know. It was crazy. And then the fact that, like, the type of stroke that I had, people would walk in, like nurses, and they’d be like, Oh, this is not what I was expecting.

Alyssa Van Steen 34:18
And so I was like, Oh, okay. And I didn’t get it until I was out of the hospital where I was like, oh, a lot of people don’t survive this type of stroke. Like hemorrhagic strokes are not like they think it’s like, 2620 25% survival rate. And I was like, okay, like, now I get it. But at the time, I was like, What? What do you mean?

Bill Gasiamis 34:46
It’s a big deal that they’re treating a hemorrhagic stroke survivor. It is a big deal. The numbers are not that good in the favor. They’re not in the favor of. The person having the hemorrhagic stroke, that’s for sure. So you know that last PT set or that therapy session that you had was that kind of like a mind shift? Was that a moment? Did that help you prepare better for the heart surgery? How did that change the way that you were going to tackle the heart surgery. Did it help?

Alyssa Van Steen 35:24
It totally did. I think that was like, and that was when I was in that therapy session, and I was working hard, and I was having that revelation in my head afterward, too. I was like, okay, like, this is my one day of like, I’m like, down the dumps about having to have all these things happen to me. The next day, I woke up and I was like, I’m ready. Like, I’m ready when, when’s the surgery?

Alyssa Van Steen 35:52
Like, let’s do this. And up until I went into surgery, I was like, in good spirits. I was like, people are they’re going to take care of me. Like, this is what’s going to happen. I have to do it anyways. Let’s just put a smile on and let’s do it like and we had, again, I had such a great team of people that were preparing me, and it was just, it was great. And then coming out of the surgery was really rough, because open heart surgery actually does feel like you got hit by a truck.

Bill Gasiamis 36:33
And opening up your your rib cage.

Alyssa Van Steen 36:39
Yeah, wow, so you’re when I woke up, it was just like, I could barely speak. I couldn’t even, like, breathe without hurting. And it was intense. And the next day, they have to, they get you like, you gotta, you gotta stand up. You gotta be moving. And I was like. I was like, okay, someone’s gonna have to, like, Help me up, because I can’t get up. And, yeah, it was, it was rough. I was in pain for a while.

Bill Gasiamis 37:17
What was the biggest challenge that you faced during the recovery, after all of that stuff that you’ve been through, this was the last hurdle, a massive hurdle, but the last one, what was the, what was the, what was the hardest part about that recovery? What would you say?

Alyssa Van Steen 37:44
I think I don’t know if anything really sticks, other than the fact that, like I it was, it was all very challenging, and it was, but I don’t have anything that really sticks out where I’m like, that was the hardest, because it was, it was all hard. And they were, and, you know, when I went to the cardiac floor too, they were like, sending physical therapists to make me walk around the halls, and I had, like a pillow on my chest to make sure that, like nothing was going to happen to my chest, if anything, if I were to fall.

Alyssa Van Steen 38:28
You see my walker, and I had my AFO at this time. And so I was, I was able to walk. I every once in a while I’d have to sit down in a wheelchair and have to rest a little bit. But it was, everything was doing well. And my heart was, everything was looking up. They, they had a put, like a pig implant in my my valve. So it’s a pig valve that they and it’s, it’s working great.

Bill Gasiamis 39:02
You’re one of those modern miracles. You know, just the fact that you went through all of that stuff, a little bit of a piece of this here, and a piece of this there, and a intervention here. I mean, everything that you went through to get to where you are today is an absolute medical miracle. Is a religious miracle, whatever you want to call it. I don’t mind what you call it. It’s sensational, isn’t it that, yes, you went through all of that trouble, and here you are. We’re on a podcast. We’re talking about it. I love it.

Stroke Recovery and Fatigue – Life After the Hospital

Alyssa Van Steen 39:37
It really is. And I know and I knew it from the very beginning, because I didn’t, I think it, it wasn’t until I got home from the hospital that I was like, starting to go through the ups and downs of coming home. You know, when you it’s, it’s rough. You. And because I really did believe that I wasn’t supposed to be here by the time I got home. But in the hospital, I was like, no, no.

Alyssa Van Steen 40:10
Like, this is good. Like I’m I can do this, but then when I got home, you know, life changes significantly. Like, we have a we have a tri level house, and I can, I couldn’t do the stairs, so we had to move my bedroom downstairs. And it was, I was sleeping so much and like I, you know, it’s hard for me to put, even put on my shoes. And it was, and there was so many medication I went home with 10 different medications.

Alyssa Van Steen 40:41
It was so rough I had, and you might know this too, like, when, when? Because you had a little bit, you had your left side was affected, right? Yeah, yeah. So when you’re the side that’s affected tries to, like, come back online, and your it almost feels like bugs are crawling up your legs or your arms. But it’s painful.

Bill Gasiamis 41:10
Yeah, I get, I used to get, like, little electrical shock, things happening, coming through, and, like, I know, like, zapping my hand and kind of trying to bring it to life, you know, like, I don’t know. Like, yeah, I can’t explain it. Like, there you go. It was just some electrical impulses that zapped my hand, made made it feel like it was, like, there and it was painful and it was annoying, but it wasn’t constant, and it was twitchy. It would twitch.

Bill Gasiamis 41:47
And that would happen. I would lie down, sometimes in my bed, sleeping or just about to nod off, and then my entire left side would do this massive like jolt, and it would just move for something. It did heaps of weird things when it was coming online and I had to get my coordination back. And my left leg, I have numbness and sensory issues on my left side, and the muscles are tighter, and my left leg would buckle, so the knee would just kind of collapse and buckle when I walked.

Bill Gasiamis 42:25
And then my eye. Because up until from the age of five to 40, I wore glasses, and I was used to doing the old push up the glasses, up your nose routine as they slide down. Just push them up, push them up. And at 40 in June, on my 40th birthday, June, July, somewhere there, mid, mid year, I had surgery, cataract surgery to remove the cataracts in my eyes to which then restored my vision, and I didn’t need glasses, but I was used to pushing the glasses up my nose, and I kept doing that for a long time after I had finally gotten rid of the glasses.

Bill Gasiamis 43:17
So in November 2014 this all happened. In 2014 I had the brain surgery my left side’s not working properly, but I’m lying down in hospital, and I remember being in the rehab facility, and I go to fix my glasses, but because my coordination wasn’t right, poke myself in the eye, and then I would continue to poke myself in The Eye regularly because I went to fix my glasses and missed the middle of my head and got it into my eyeball. So that took a little bit of getting used to both the not fixing my glasses that weren’t there, and also dealing with the poking of my eye.

Alyssa Van Steen 44:01
Yeah, it I was so thankful I didn’t have any kind of, like facial anything with my stroke. I think it was like a day or two like my stroke happened. I had a little bit of slight, like, down, turning on my on my right side, but it kind of corrected itself. And so I was so thankful for that, but oh my gosh, the at night, I would just feel like bugs were crawling and biting me on my right side, and it was so painful.

Alyssa Van Steen 44:37
And my I was also like, I also lost quite a bit of weight when I was in the hospital. So I was only about 100 pounds, and I’m five eight, so I’m I’m pretty tall. So they were like, well, we can’t give you any more medication, so you really just have to put a bunch of ice packs on you.

Alyssa Van Steen 44:58
So I was like, laying. Bed, just like a bunch of ice all over me trying to sleep, because that is just it’s so painful to have, like, your body is responding but doesn’t know how to, like, come back online and like, Hey, I’m here now, like I’m I was asleep, but I’m awake now. But they don’t, they don’t know how to react.

Fighting Through the Pity Party After Stroke

Bill Gasiamis 45:28
Did you ever do the pity party? Did you ever want to give up and say, oh, forget this. I’m not doing this anymore. Did you ever have moments?

Alyssa Van Steen 45:34
When I got home? Yes, I had a lot of days where I was like, throwing my cane around, like, and I was just mad that this was my life now I really, like, you know, and then like, I’d go to, like, trying to wean myself out of off the medication, but the because I wanted to not have to take so much medication, and I would try to wean off, off of the medication, but then it wasn’t working, so then I have to go back on it, or, like I was trying to hold out.

Alyssa Van Steen 46:12
And I would just, like, collapse into, like, this breakdown where I was like, I just, I didn’t want to be here anymore. I really didn’t want to live, I didn’t want to live this type of life like I didn’t think that I was supposed to be here anymore. But it, and it took me, like, a good month to, like, get out of that headspace. I got home on she June, June 26 is when I got home. It took me a good month for me to like, get out of that headspace.

Bill Gasiamis 46:53
What year was that?

Alyssa Van Steen 46:56
2023.

Bill Gasiamis 46:58
It’s very, very recent.

Alyssa Van Steen 47:01
So, um, but that I also, I think you it’s, it’s, I don’t think that, like, I don’t look back on, like, the little pity parties and saying, you’re like, oh, I shouldn’t. I should have just, like, sucked it up or anything, because you have to go through that because, but also, like, I wasn’t. I wasn’t saying, like, No, I’m not going to, I’m not going to do therapy, or, like, No, I’m not going to practice my hand movements, no, I’m not going to, you know, work with my Play Doh today, or, like, whatever. Like, I was like, I still did all that.

Bill Gasiamis 47:38
So it was more of an expression of your frustration and the realization that I’m in this completely different world than I was three months ago.

Alyssa Van Steen 47:49
Yeah, because I was like, how am I supposed to, like, go to work, how am I supposed to do anything? Like, how am I supposed to I don’t know how long this is going to last. Like, because in the hospital, I was kind of like, I think I got the idea of, like, no, no, I can do this. Like, I can ill. I think the misconception with like strokes, I think if you haven’t had one yourself, or if you haven’t had a loved one, had it, had one, you you’re under this impression of like, oh, okay, oh, well, he’s driving again, so it just comes back, like, or you’re walking again, so it just comes back.

Alyssa Van Steen 48:28
It doesn’t, it doesn’t just come back. You have to find new pathways in your brain to now learn how to walk, learn how to drive, learn how to talk. It’s it doesn’t just come back.

Bill Gasiamis 48:45
And often not in the same way that you had it before. It’s not the same. It’s different version, and it’s usually different on one side of your body, which makes you focus on the difference. Like, my left side feels like this. My right side feels like that. For me, that’s kind of the part that’s still kind of I grapple with. It’s like, I wake up in the morning. I gotta get out of bed. My right side’s up and awake and ready to go. My left side still needs another half an hour. That’s why we when we connected at around eight o’clock Melbourne time, I was still half asleep.

Bill Gasiamis 49:20
Because, literally, half asleep. How about that? Yeah, because my left side just it doesn’t want to move at the same pace as my right side. Actually doesn’t want to do that at the same pace. Needs a lot longer. My leg needs to wake up so that it does come back. And everything appears normal to me if people look at me.

Alyssa Van Steen 49:43
Yeah, that’s so funny that you said that, because that’s like, that is so what you feel like, even today, when I got up, I was like, oh my god, I’m so tired, but I’m like, ready to wake up, but like, I need to lay down a little bit longer. And there’s, there’s days where, like, I’m getting ready for work, and I. Day and I’m like, I have to sit down. Like, I can’t, like, I can’t just, like, get up and go, like, like I used to, like, I have to, like, take it easy. You need to, like, have rest days.

Bill Gasiamis 50:11
Those running late days, running late days, right where you used to wake up, no breakfast, throw your clothes on, yeah, either jump in the car or walk to the train station or wherever, and just go to work, no big deal, and just, there’s just another day. They they don’t happen for me like that. I’ve got to be up, I’ve got to have time. I’ve got to settle into the day before I even get started.

Bill Gasiamis 50:39
It takes a while. I’m curious, so you would have been, you sound like you were a person who had a bit of a social life. You would have had friends. You would have had people in your life other than work. Then you’re in hospital for three months. How do your relationships change? You know, did some people step up extraordinarily, like, what happened there with your personal life?

Alyssa Van Steen 51:06
I think that, um, I’m I have a lot of family friends, but I have two really good friends that they were actually on a cruise when all of this was happening, oh my gosh, and so and they were like, you know, I’m sure they were like, so distraught by it, but then when they came back, I had told my mom and my family, like, I don’t want people in the hospital with me. I don’t want, I just want my immediate family. I don’t want aunts and uncles, and I don’t.

Bill Gasiamis 51:47
The whole extended family in there.

Alyssa Van Steen 51:51
It’s just too over stimulating. I think it’s like, yeah, and it’s just, like, too much for me when I could, you know, and I was, at the time, like, I was still not able to, like, speak that great and like, I just, like, didn’t want people to see me, like, you know, it’s just it wasn’t my thing.

Bill Gasiamis 52:14
It makes sense. Well, firstly, it’s, it’s hard. We’re the same, like my family, Greek family, like everybody was there. Everybody actually came. And I didn’t have the opportunity to think about that, because I went from, you know, being two, two brain hemorrhaging in within six weeks. That’s a little bit but upright. But see two brain hemorrhaging, but upright in some kind of a strange way.

Bill Gasiamis 52:45
So when people saw me, they didn’t really have the deep desire to completely overwhelm us with love. They were just okay. He looks all right, like mustn’t be that bad. But then, after the brain surgery, when they find out that I can’t walk and, you know, my head has got a massive scar on it, and I’m in hospital and I’m lying down, well now they can see that that’s more dramatic than what the two brain hemorrhaging looked like early on, it looked way more dramatic.

Bill Gasiamis 53:21
So they all came, and I didn’t have the opportunity those first few days to think about, who do I want there? And they were all there. My wife was overwhelmed. I was overwhelmed, and it took about two or three days before I realized we can’t have that many people in the room. It’s way too many people we can’t be dealing with everyone else’s emotional baggage that they bring without knowing that they’re bringing it and making it burdensome. They don’t know. Yeah, they come for the right reasons, but it’s the wrong time to turn up for the right reasons. You need to come later.

Alyssa Van Steen 54:00
Right and, and my best friend actually said she said this to me multiple times afterwards. She’s like, I I just know you and I know that you wouldn’t want me to go to come in anyways, because I remember my my mom had said something like, why don’t you just come anyways, even though she doesn’t want and she didn’t, and I’m glad she didn’t, because she knew me, whereas my mom was more of like, I just want people around her. Maybe it’s going to make her feel better.

Alyssa Van Steen 54:33
You know, you don’t, she doesn’t. You don’t understand it, unless you’re in the hospital bed and then when and when I was having my stroke, there were people that were around me, but I, I mean, they said that I was No, I didn’t even know, and so I, I don’t have any, I don’t have memories of those people being there, but they were just like, I mean, they all. Had said, like, it was really terrible. I’m like, yeah, it’s not great. It’s not really like, what I don’t I don’t want people to, like, remember that time.

Bill Gasiamis 55:12
That’s cool. I totally get it. So you’re back into the land of the living everything is going great. As far as the medical stuff is all behind you, the actual critical, urgent, acute medical stuff is all behind you. How does life evolve now into what you’re doing now into how it’s got you to where you are today? So I heard you say a little earlier that you’re back at work. So tell me a little bit about that transition from bedroom after the hospital bed, bedroom downstairs to outside world.

Alyssa Van Steen 55:51
I think I was determined. By the time I got home, I was like, determined, like, I will go I will get upstairs, I will get back into my room. I will do these things. I will drive again. And that was, those were my goals. I was like, that that was more my set. I set my sights on it. And I was like, even if I’m going to be struggling up and down the stairs, I’m still going to be doing it.

Alyssa Van Steen 56:20
And so I moved back upstairs when it was very difficult for me to go up and down the stairs, but I could do it safely with my hand handrails, and I had, I was still wearing my AFO, and I could do it. It takes me, it takes a lot out of me to just go up down the stairs, but I’m gonna do it. And I did. And same thing for the driving thing. I now drive with my left foot.

Alyssa Van Steen 56:50
I have my my pedals are reversed on my car now, and I have, like, a little steering knob, yeah, and that was really exciting. So once that, once that happened, once I got back into my car, which was, um, last fall. It was like, September, um, 2024, I was like, the minute I am able to drive around, I’m going back to work. So I was like, even if it’s too soon, I’m doing it, and I will figure things out when I get back to work once I’m in the job, if I if I need little leeways here and there. I know that they’re gonna be there for me.

Alyssa Van Steen 57:44
Let’s just go. Because I didn’t, because I think you can, you can say like, Oh well, I don’t know if it’s time yet. And it’s like, you’re never gonna know when the time is. You just gonna jump in the deep end, right? And so I also was, oh my gosh, was that? I think it was last summer as well. Yeah, it was last summer as well. So I was 2024 I also ditched the the brace and a device on my leg that by an S device that helps me walk, and I was able to put down the neighborhood that I can, I can do more.

Bill Gasiamis 58:36
Sounds like you’re it sounds like you’re driving.

Alyssa Van Steen 58:39
I’m gonna. Now, I don’t.

Bill Gasiamis 58:45
Connection issue, it sounds like the driving was your I’m back moment. It sounds like that was the kind of defining moment you got into the car, you became independent again, and you were going to find a way to overcome all the other stuff as well.

Alyssa Van Steen 59:03
Yeah, I was like, once I’m driving, I feel like I got a sense of my like, life back, like I was able to, like, go and go to therapy by myself, like, or because I was doing outpatient therapy as well. And I was like, it was, it was crazy. And so I felt like, Okay, I had my independence back. So I went back to work in last October, and it was a, it was a transition. It was, it was difficult, but it was great.

Reflections on the Stroke Recovery and Fatigue Experience 

Alyssa Van Steen 59:46
And I could have asked for shorter days, but I didn’t. They were just, they were all eight hour days, and I was like. If they that, I just knew that they the way my work is. They’re just so accommodating for anything and anyone, really. So I just knew that, like if I needed a shorter day, they would help me. If I needed to work less days, they would help me.

Bill Gasiamis 1:00:20
And so as your role remained the same.

Alyssa Van Steen 1:00:25
My role has been, yeah, it’s the same now I’ve, I am able to, I can, I can write and I can cut. And the way I my my writing, it looks nice, but it’s not. It doesn’t look like my writing. You know what? I mean? Like, it’s gonna, it’s gonna take me some more time, but I can do the work at work for it, and, and, yeah, and it took me a while to, like, be able to, like, get on ladders.

Alyssa Van Steen 1:01:05
And a lot of you know, we work, we work with, like, a lot of boxes, and sometimes heavy boxes and but there’s always people around. So if I really needed to, if I really needed someone to, like, help me with anything I could. But now I feel like I’m at a good place where, like, I really don’t need people to help me.

Bill Gasiamis 1:01:30
Yeah, that’s excellent. What is what have you? What have you learned about yourself during this time? What a stroke taught you, or the heart condition taught you, or everything that you’ve been through taught you, my gosh, there’s so many things that you’ve been through. What are they taught? What are some of the lessons?

Alyssa Van Steen 1:01:48
It’s funny too, because I was listening to one of your your vlogs that you had put up, and you said something that I’ve always said to my mom, is that this stroke has been the worst and best thing that’s ever happened to me. I don’t think I would have known a sliver of how strong I am until I went through this. I have this, like, listen, we also we, I still have my bad days. This is not, like, you know, I’m not, I’m not saying that I don’t have bad days.

Alyssa Van Steen 1:02:30
There are days and I there’s a lot, a lot of things that I still have to work on. But I just, I, I’m, I am, I am capable of doing so much more than I thought I would have ever been able to even think about doing. So it’s been, it’s been really eye opening, especially for my age as a person.

Bill Gasiamis 1:02:58
You’ve changed as a person as well. So how have you changed as a person?

Alyssa Van Steen 1:03:07
I think I don’t like, I don’t have the trying to say it, like, kind of nicely, there’s, I don’t, I don’t have the time for any of the BS, you know what’s, you know what I’m talking about. I don’t have, yeah, like, I don’t have, I don’t have that in my brain where I’m like, this, doesn’t it? That doesn’t matter. It’s not for me, you know? It’s not. I think when you go through things like we both have been through, it’s you’re like, that little in this big world.

Bill Gasiamis 1:03:52
It sounds like your focus has changed from the little things to the more important things, whatever they are for you.

Alyssa Van Steen 1:04:01
I mean even if something for me is to, like, go out with, like, go buy tickets to a concert or something, it’s not. It’s what’s making me happy right now, and it’s not, I think you kind of get stuck in this, like, oh, well, is this?

Alyssa Van Steen 1:04:30
Should I be doing this? Or should I be saving my money for this? Or should I be doing this? Or should I be worrying about the next thing that’s going to happen? And I feel like, with a stroke, you’re just kind of like, No, you’re just gonna, you have no guarantee. There’s no guarantee, like, for anything. So it’s like, who cares? Like, go.

Bill Gasiamis 1:04:52
There has to be money or whatever. I agree. I agree. There’s part of me that’s like, all right, save for a rainy day. I. Yeah, but, but say for just a few of them, not for 1000 rainy days, right? Just say, for a few rainy days, so that you know, you get into the habit of not blowing every single dollar you made the last week, which is cool, but also experiences. I think it is, for me, like it’s about experiences and people. So if you give me your time, oh my gosh, like I’ll do anything for somebody who gives me their time.

Bill Gasiamis 1:05:29
I value time more than I’ve ever valued it, and that really is something that I see as being the only true i it rich. Riches, the only true riches is time, how much time we have, and we don’t know how much time we have. So that’s the problem, right? So, yeah, which I experiences? Can we have this experience like, say it’s a traveling overseas experience. It’s like, well, we could, we could do it on a budget, which means we still travel overseas, we still see that place, thing, those people, or we can do it five star all the way, which we’ll never be able to do.

Bill Gasiamis 1:06:18
We’d be broke in no time, and we wouldn’t be able to experience anything else after we came back from that event. So for me, it’s like going all right, how can I do what I want to do? How can I have that experience in a way that supports me what I want out of it, and allows us to also be able to buy food next week or tomorrow or whatever? And that before, I used to be in this pattern of, we can’t go anywhere, we can’t do anything, because something might happen down the track, and then if we are not, you know.

Bill Gasiamis 1:06:57
Five years ahead on our mortgage, or 10 years ahead on our mortgage, or any of that stuff, well, it’s going to be all ridiculous and terrible, and oh my god, we can’t spend any money on anything. And then I got the sickest you could possibly get. Things were so terrible. Everything was so bad for such a long time, for at least three years for us. And even though we I had created that buffer of if something goes wrong, which I want to be okay for 10 years without working, if necessary.

Bill Gasiamis 1:07:30
Even though I created a buffer like that, it actually meant nothing, because I didn’t know whether I would be here tomorrow or the next day. So or fantastic. You don’t have to work for 10 years or forever. You might never work ever. You might not come out of the hospital after your brain surgery. So it’s like it meant nothing. Things didn’t seem to have the importance that I imagined in my head that they needed to have. Now I’m not saying that a lot of people don’t have a different experience than us. They definitely do, and I get everyone has a different way of approaching that.

Bill Gasiamis 1:08:07
But for me, it helped me break down some negative thinking patterns and barriers where I was missing out on life while trying to preserve my life. If my life went wrong, it’s just it was backwards. It didn’t make sense. I wasn’t living for my life right now, while I was in it, I was preparing for a life I wouldn’t be living kind of thing so weird. I don’t know it’s so weird, I can’t explain it, but like you, yeah, I look at opportunity to have an experience is something that I need to make happen, rather than not make happen.

Alyssa’s Coping Strategies and Daily Stroke Recovery and Fatigue Challenges

Alyssa Van Steen 1:08:49
Yeah, it was. It does put this like perspective in you, and you’re like, I can’t get rid of that perspective anymore. There’s no way of like going back to the way I thought before. So it, yeah, like I said, like to put the nice, nice way, like, there’s just no room for the there’s no room for that type of thinking of you. We’re just never promised anything. So it’s, it’s just better to, like, at least have some time to have fun while we are we’re here.

Bill Gasiamis 1:09:30
One of the things that was really cool recently is somebody was watching one of the interviews I was doing, I think, or maybe one of my vlogs while they were in hospital recovering from a stroke.

Alyssa Van Steen 1:09:44
I heard that one that you were, what you were telling me, that while your video was telling me, yeah, I did. I did hear that. I thought that was so cool, because I really, because you were kind of saying, like the way. That you in the hospital and you were almost you were already thinking of doing this podcast, basically, in one way or another.

Bill Gasiamis 1:10:10
I had rolled out. I had rolled out of surgery, couldn’t walk. The first day of not walking, they hung me up on a on a on a device where I was attached to the ceiling so that my feet are touching the ground, but I’m not at risk of falling or collapsing or anything like that. It’s to take the weight off of the therapist so they’re not holding my body up while I’m trying to learn how to walk again. And we knew then that things were pretty serious. I couldn’t walk, and they needed to put me in a month of a two months of rehab they were going to put me into.

Bill Gasiamis 1:10:47
So I’m going through this after seven days of being in the hospital, in recovery, day one day one of therapy was moving me just from hospital to the therapy room. And while they were putting me through, I go through this door, and on the top of the door, it says the transit lounge. And I’m like, Wow, that’s pretty cool. I’ve been to transit lounges before. They were all for a trip overseas or somewhere exotic that I hadn’t been before. This one was a little bit weird. The name of the room was a bit bizarre.

Bill Gasiamis 1:11:19
But I knew what it meant for me was I’m going from where I don’t want to be, where recovery has sort of paused, it’s not happening much more, to a place where recovery is going to continue and I’m going to get better. And I thought, wow, that’s cool. And that became the first name of my podcast, and it was the transit lounge podcast when I first started. And that podcast was about 10 or 20. Was about 20 episodes, I interviewed people who weren’t stroke survivors. We were talking about recovering from something serious.

Bill Gasiamis 1:11:55
And when we got to the end of that, I didn’t feel right about it. And then I realized I should be interviewing stroke survivors, and then their recovery after stroke podcast happened. And I don’t know, I cannot remember how I joined the dots between about 2015 when the podcast started, middle of 2015 somewhere there, to November 2014 where I saw that lot sign and said, Oh, that’s a cool name for a door for a room. I had no idea how I connected the dots and then turned it into a podcast.

Bill Gasiamis 1:12:33
But was happening in my mind, and I was doing a lot of those things in my mind that that helped me with my recovery. One of those things I was also doing was, um, I was imagining myself walk. I mentioned that in the vlog, and didn’t know exactly how that was helping, but I know that it was firing off the same neurons as if you’re walking. So that was like, oh, in my downtime, without any physical effort, I can create pathways and reroute and get it all going.

Alyssa Van Steen 1:13:09
I wish I would have had that video of you talking like that when I was in the hospital, so that that makes me so happy that someone was in the hospital that was hearing that. I really wish I would have heard that, because me, I’m, I’ve always been such a walker. And I just walk like multiple times a day, and I just, I love it. I can’t get enough of it. And the fact that you have this thing that is taken away from you in a split second, and now you have to work so hard to just get it somewhat back.

Alyssa Van Steen 1:13:53
You can’t even so it was just it was really hard for me when I was, like, not able to, like, go on walks, I worked really hard, and the first time that I walked without my brace, I was on the Halloween and like, I’ll never forget it, because we went at night to walk around the the street, and I was like, I’m not I’m Not wearing my brace anymore. My brace was like, pinching me, and it was just like, just like, I’m so over this, like, I want to walk more.

Alyssa Van Steen 1:14:29
And, yeah, you just, I think, also, like, I have so many and I remember in the hospital too, I had dreams of me walking and so that made me like, think it was crazy. When you said that on the on the vlog, I was like, well, it’s crazy. I wonder if that was actually 100% right. It’s so crazy.

Bill Gasiamis 1:14:54
You’ve woken up from James before and felt like it was a real experience. Well, that’s why. Why? Because you’re actually living your your your mind, your body, your soul, your spirit, everything is re is experiencing that dream as if it’s actually happening. The fact that you’re unconscious in sleep and you’re in a bed matters not the same parts of the brain are firing, the neurons are firing, the neural pathways are wiring up. It’s all happening, right?

Fully Healed, But with Scars: Alyssa’s Message to Stroke Survivors

Bill Gasiamis 1:15:26
And that’s the thing I wanted to ask you about, like, what we might be chatting about this right now, but there could be a stroke survivor listening right now, who’s in the hospital, but what would you say to them?

Alyssa Van Steen 1:15:44
I think that I was under the impression that I would be like healed at some point. And now it’s 2025 I’m approaching my two year and you had said something in one of your vlogs, and that really stuck with me is that you, especially now, like in in where I’m at right Now, I still wear my device on my leg every day, um, but you can’t really tell that I, you know I’m wearing pants too. You won’t see it. You and I’m not wearing a I’m not using a cane, unless it’s like nighttime, or if I’m really tired, then I’ll, I’ll use my cane. It doesn’t really look like anything happened to me.

Alyssa Van Steen 1:16:45
I talk, you know, you wouldn’t know that I had lost my speech, you know, you you wouldn’t have known any of that, and you had said, fully healed, but with scars. And that’s but I don’t see the scars being and I don’t think that you meant it in this way either. But I think a lot of people think like, scars, like, it’s a like, it’s a bad thing, and I see it as a good thing. These are, these are like, we want these scars, because you’ll never forget the things that you have went through with these scars, even when you look like you’re fully healed.

Alyssa Van Steen 1:17:34
And when people say, like, when people ask, like, oh my gosh, how are you doing? Okay? And they do say that they’re like, Okay, so you’re fully healed. And I’m like, yeah, like, like, sure, because I think like you had said in one of your vlogs. I think a lot of people say like, they want to hear, they just want to hear you saying and, and that’s fine, because I know that there are certain people that, like, want to ask more questions.

Alyssa Van Steen 1:18:02
And then I will tell them, like, yeah, no, I’m not fully healed. I don’t know if it will ever happen, but like, for right now, like, this is what’s going on and, but I’m doing really good. Like, there’s probably no healing. But for the MO, for most people, I’m just, I just say, Yeah, fully healed.

Bill Gasiamis 1:18:22
Qualify a little bit what I meant by that, because you’re you’re right about what I meant is that I actually have a physical scar on my head. Everyone’s because of where my hair really, really short, like a number one. Everyone sees it all the time. And it’s not why I wear my hair a number one, but they see it. So there’s that, then there’s emotional scars that are there. And let me tell you, when I did the book launch, I’m in a room, there’s about 40 people there. I I was supposed to do a 20 minute speech. I cried about four times, and I was like, Oh my gosh, I didn’t plan for this in my speech.

Bill Gasiamis 1:19:02
It’s ruining the flow. But, you know, it’s heartwarming, and people kind of made, probably made them buy an extra book or something, I don’t know. So it was okay. So that little emotional thing, I didn’t realize it was there until I got up to do this presentation in front of friends, family, loved ones, people who came to support me, and it just came out of nowhere. So the trauma that I went through is basically has been dealt with.

Bill Gasiamis 1:19:31
But you know, there’s a little niggling bit that needs to come out every so often and say, Hey, remember me, and I’m okay. I remember you, and then there is the mental scars as well. So again, healed from them, but I had to grapple with I’m not going to be here. Maybe tomorrow. I don’t know if I’ve said the things I need to say to my family, to my friends, to my wife, to my children “Oh my gosh, I haven’t got time. I need to get all that stuff done and sorted” and then I think my healing really started to take the a turn to the next level.

Bill Gasiamis 1:20:14
Where things started to improve a lot, despite my pain, despite my numbness, despite falling over, despite not being able to work the same as I did before, when I started doing stuff for other people, helping people, I didn’t realize that at the time it was a little bit selfish. When I started this whole podcast and book thing and everything, because I wanted to, I wanted to use what I’d learned and the people that I met to help me, which was cool, right? Because I was at least advocating for myself, and at least I was leading my own recovery.

Bill Gasiamis 1:20:55
I was in charge of it somehow, right? There was other people involved, doctors, therapists, they were all involved, but I was leading the charge. But then when people reached back through the podcast, comments on the YouTube video or from the book, and said, This really helped me. I don’t know that just took everything to the next level that made my whole experience that really tough stuff that we had to go through worth going through. I don’t do that kind of stuff from normally.

Bill Gasiamis 1:21:27
That’s not what I do. I used to do all selfish stuff. It was all about me, me, me, me, me, how much money am I going to make, how much, what car I’m going to drive, and how many houses I’m going to have, and all this stuff, and now all that, all those ideas went away, they went away, they just, they fizzled. And I’m content. I have contentment, which is a gift that I’ve never had before.

Alyssa Van Steen 1:21:51
Oh my gosh, yes, that’s such a good way to describe it, like the contentment, I think because I, um, I also have a scarf, but you can’t really see it because I have hair. It likes to pop out every once in a while, but yes.

Bill Gasiamis 1:22:10
On a bad hair day.

Alyssa Van Steen 1:22:15
Yeah, I also think, like when we go, we go back to, if we can come back to what to tell people to. I also think that, like the it was the first, I think it was the Okay, so it was the September after I got home from the hospital. So I got home from the hospital in June, right in September, I had purchased about a year in advance. Well, I I purchased Cold Play tickets with my best friend, and the pandemic happened, and then they canceled their tour, and they were like, but we’ll keep the tickets, because when we come to LA, we’ll give we’ll let you have first pick, like, where you want to see.

Alyssa Van Steen 1:23:07
And so we’re like, okay, so it just happened that, right? It was probably the month before my stroke happened that we were like, We got in, we got tickets. It’s coming. It’s in September. And I was like, I’m not missing that con concert. I waited for that concert, and it was also like, it was going to be special, because it’s my friend, it’s my best friend’s favorite artist. And so I was like, I’m gonna go. It’s gonna be really challenging for me, especially because I’m wearing my, I was still wearing my brace.

Alyssa Van Steen 1:23:41
It was at the Hollywood Bowl, which, if you’re familiar, it’s just not, it’s old, it’s very it’s it’s muddy, where we had to park there. It was a lot. It was a lot. And then there was a lot of people, because it was, everyone was stoked that it was only there for like, two nights too, and they were going to go overseas. So it was, like, it was a lot people were bumping into me. It was I got home, and while I had a great time, I got home and I just collapsed and, like, bawled my eyes out, because it was just so over stimulating.

Alyssa Van Steen 1:24:21
But I’m so glad I did it, because the next concert I had was like two months later, and I was like, I’m gonna go. I’m gonna do it because it was really traumatizing, but I’m gonna do it again, and it was so much better the next time I went. So I feel like a lot of people that are sitting in their hospital beds, maybe right now, where they’ve gone through their stroke, and they don’t think that they can do things like you can do things we can do it like you might have to change your seats. You might have to whatever it is. It doesn’t have to be a concert.

Alyssa Van Steen 1:24:58
But I think like, and also for me, like, I’m such an introvert too, to like, go to a concert, it’s just already overstimulating. But then the with the stroke, it’s, like, so much more over stimulating. But I got little earplugs, and I had, like, a little safe zones, like, planned out. Like, okay, if I need, if I need to go and, like, have, like, some quieter time I’m going to go over there, like, or whatever it is. Like, I like, made little plans to make sure that I was going to be in the safest environment for me to also, like, live my life, though, like, I’m not going to say no to things.

Alyssa Van Steen 1:25:44
Yeah, and I don’t think people should say no to anything like, especially when it’s it’s really hard to it’s really hard to like, say that you’re going to get up and do all your exercises and do all of your words, scrambling and little things that I have to, you know, that I’ve done, and it’s hard to, like, get up and be like, Okay, I have to do this today. I have to do this like, there’s no there’s no negotiation, like, I need to go for a walk today because it’s going to help me, because then I’m not going to be as stiff. My spasticity is not going to be as stiff the next day, and it’s just, yeah.

Bill Gasiamis 1:26:25
I love it, there’s, I don’t know who said it, so I’m not going to be able to credit them. But on the social somewhere, I picked up this video where the guy was saying, do something for yourself today that your future self is going to thank you for and so, yeah, okay, I love that. I love doing it for my future self, because my future self really appreciates all the hard work that I did today.

Introversion and Adapting to Social Environments

Bill Gasiamis 1:26:50
And it sounds like they’re two different people, and they almost are. They almost are two different people, but we benefit together, and the hard the person who’s doing the hard stuff might really hate it, but Bill of the future is so glad that I did the hard stuff when right, I had to do it. Yeah, yeah, I love it. So you said you’re an introvert. I don’t get that. I don’t get that. Is it just a tendency where you prefer quiet time, alone time, that type of stuff.

Alyssa Van Steen 1:27:27
Yes, I prefer quiet time, alone time, yeah, but I, I also just, I think I because I also worked when I was younger. I worked at Disneyland, and so when I worked at Disneyland that I was, like, I was they, they push you to, like, get out of your shell. And I really wanted to stay working there so, and I think that kind of helped me. That was, like, a long time ago, but, and then now, like, the work, the place that I work now, very extroverts, and so I can go, go in and turn it on, but I definitely have to go to my car and take my break in in silence.

Alyssa Van Steen 1:28:12
I think also, like the for me, like the biggest things that get me on a daily, day to day to day basis, is the fatigue and the over stimulation of anything and everything, even if, like, certain lights, or even if it’s just like, oh, like a lawn mower going in the backyard, or something like, I just like, can’t There’s Certain times the day, or, like, whatever it is, and then fatigue, just, you just, you don’t know when that’s going to happen. It’s just going to happen whenever it feels like, because it’s like, sometimes you think, like, I’m going to beat the fatigue, like I can. I can do this, like I can.

Alyssa Van Steen 1:28:56
I can take a little easy here, and then I can. But it No, there’s no, I think, like a traumatic brain injury, you can’t beat the fatigue. I have to, I have to keep learning that and to say that out loud, because I know.

Bill Gasiamis 1:29:12
Beat you down. You can test it, and you can push the limits of it a little bit. But then it’s like, not even me. I’ve been at this for 13 years now. I come home sometimes at, say, 330 or 4pm and I’ve got a list of emails, stuff to do, send, and my brain’s going, you’re not getting any of that done today. Absolutely none of it. Don’t even think about it. Sit down and do nothing. Otherwise we’re not going to have a good day tomorrow, and then the fatigue wins. But I’ve come to terms with it.

Bill Gasiamis 1:29:47
I think introversion is actually a really good skill, because when you’re comfortable being on your life, on your own and with yourself and. Having quiet time while you’ve practiced it for so many years, you know how to do that really well and switch it on, whereas I’m not like that. I was always out and about with somebody doing something. I’m a total extrovert. So then when it came to alone time and me time, it felt weird. It felt weird. Ah, okay, I’m alone and all right, what now this is boring, and I can’t occupy myself and I can’t stimulate myself.

Bill Gasiamis 1:30:27
I’ve gotta get out and about, and that’s where I struggled. I struggled with the fact that even in hospital, after the the first bleed, my doctors and nurses were looking for me because I was never in my hospital bed. I was never in the bed. And they’re like, You are not well. There is a blood vessel bleeding in your brain. You have to be in your bed. And I’m like, No, everything’s fine. I would meet up with people at the cafe. We would chat.

Bill Gasiamis 1:30:56
They would send search parties down to the cafe to look at look, look for me so they can take me back up to do blood tests, scans, all that kind of stuff. So I I see introversion in this scenario as like being a skill that gives you guys the opportunity to really give you, give yourself that time of No, I don’t want people around, I don’t want noises. Just wanted to be me quiet place. I always felt like I wasn’t productive enough.

Alyssa Van Steen 1:31:29
No, but that’s so true. But then I will say, like, although like, I’m also the type of person that, like, I can’t just sit still, like, I need to be doing something like, I and I think that’s why I like, I like gardening, I like walking, I like, like, like, going out with my dog. Like, I I’m introverted, but I’m also, like, if I’m sitting and watching like a movie or something, I’m working on my hand. Like, I’m working with my hands. I’m I’m cutting paper, I’m doing like, art or something, because I can’t just sit still.

Bill Gasiamis 1:32:04
You’re occupied that.

Alyssa Van Steen 1:32:06
Yeah, I need to be occupied. But that also, in turn, like, doesn’t really help me when I’m, like, supposed to be resting, and I’m like, I’m like, already thinking, I’m like, Okay, I have to do this. Okay, then I’ll do okay. I’ll do that. When I’m rest, I’m resting, and, you know, it’s like, I’m trying to lay in bed, but I’m already, like, making lists of all the things that I can do this week and like, and so it probably doesn’t really help that I’m like, not great at, like, Resting, resting, but yes, I can be by myself alone, no problem.

Stroke Recovery and Fatigue: Support and Community Building

Bill Gasiamis 1:32:42
I love it. Well, hey, I really appreciate reaching out. Thank you for sharing your story. Is a wonderful story of overcoming and recovery and moving forward, and thanks for following my vlogs and, yeah, supporting me the way that you have. It’s brilliant. And I look forward to hearing how things evolve from here and how life improves further.

Alyssa Van Steen 1:33:11
I am too. I do want to like Leave, leave. I guess the audience with this, when I got home from the hospital, it was really hard for me to find anyone like me that have gone through a similar thing, um, any type of stroke, or at least, you know, any kind of stroke or I would love to find, I would have loved to find, like, a hemorrhagic stroke person that was like posting, like, day in the life of how, like, you know, healing from I couldn’t find it. It was really hard. And, and then when I, if I do find it, they’re not in my area, so I don’t have people that around me that have that similar interest.

Alyssa Van Steen 1:34:13
But I found it online when I started posting videos on myself, and I got so many messages over like, I think it was like one or two episodes, or episodes of posts on Tiktok, and I had so many people like, say, like, oh my god, I’m a hemorrhagic stroke survivor as well. Like, blah, blah, blah, or, you know, or whatever, even ischemic stroke or and it was like, so crazy, the amount of people that reached out to me, and they were like, Oh, thank you for posting this. This is so cool. Like, I’m so I’m so surprised you can do this, or, like, whatever it is. And I was like, Okay, this is cool.

Alyssa Van Steen 1:34:54
And I had this, like, similar thing that you kind of had, where it was like, Oh, I. Wow, I really love this, but it’s also like, helping me as well. Like, I’m, it’s like, very selfish, but like, it is true. Like, it makes me feel so good when I’m like, I can’t, I didn’t find it for myself, but I’m going to be it for someone else. And I think that, like, there’s, there’s so many people that have strokes younger and younger right now, and they’ve been, they’ve told me this in the hospital. They were like, we’re seeing more and more like younger people with strokes. And it was really hard for me to find people.

Alyssa Van Steen 1:35:39
So I was like, I’m gonna, I’m gonna break that wall, or at least, like, maybe, maybe I wasn’t looking hard enough, or whatever. But, you know, it’s like, you need it, because I think, like, your podcast is so it’s it. There’s so many episodes of people.

Bill Gasiamis 1:35:58
Yeah, nearly 350.

Alyssa Van Steen 1:36:01
Right? It’s crazy, like, and when I found out, you, I found it, you’re, I was like, Oh my gosh, look at all these people have had different types of stroke. I was like, and it’s so it’s so lovely to have someone different podcasts, but they all say the same type of things that I went through, and it’s something that’s like, Oh my gosh. It’s very meaningful. It really is. So I also, I also have, like, this little quote that I have been telling myself that I kind of like remind myself every day that the toughest gems are the hardest to mine.

Alyssa Van Steen 1:36:47
And I really feel like when you’re when you go through any type of stroke, I feel like you feel that, that that you feel that like the whatever it is that you had to get back to to give you, like a some a little semblance of your regular life, like it’s really hard, but it’s so rewarding. Um, yeah, and I just, I appreciate I appreciate you, and I appreciate the things that you’re doing. And I can’t wait to listen to more podcasts.

Bill Gasiamis 1:37:30
Thank you. I’m gonna, I’m vlogged, yeah. Thank you so much. I’m definitely be following your journey on Tiktok. We’re going to have the show notes. Anyone who wants to connect with you will be able to go and connect with your community. Is so important I was missing that I created the same thing. And that’s the part of it like that’s what our responsibility is. You need to create your own community the way that you’re comfortable doing, in the format that you want to do it.

Bill Gasiamis 1:37:57
And then people will will be attracted to that, because it’s you, because you’re unique in the way that you tell your story. Even though we are stroke survivors and we’ve had similar things, we’re totally different. There’s only thing we have in common, is stroke but also, then we also have the understanding in common of each other. It’s like, okay, and that is, that’s what you can you imagine the amount of people that I’ve spoken to, the different political views, the different ideological views, and all that kind of stuff. I’ve never spoken about that at all.

Bill Gasiamis 1:38:33
I’m not interested any of that. I’m just interested in people’s stroke journeys, what happened to them, their recovery, how they’re fighting back, how they’re overcoming what they’re learning along the way, because they all help me. And every episode I get something out of, every person I interview I get something out of, and I am glad that there’s more people talking about it, because I can’t be the only voice. Like there’s just not, it’s not, it’s not diverse enough for me to be the only guy talking about strike.

The Role of Podcasts and Personal Stories In Stroke Recovery and Fatigue

Bill Gasiamis 1:39:06
I can’t represent women. I can’t represent people from different socio economic backgrounds. I can only represent me the way that I experienced it, and that’s what I love. I’ve I’m even having meetings with people now online for half an hour who have reached out and said, Oh, how do I start a podcast? Or what can I do? I try to fit in. If somebody asks me, you know, how do I do it? Because I want to know. I want to make sure that none of us, former stroke survivors, and unfortunately, stroke survivors to come are without information.

Bill Gasiamis 1:39:42
And I don’t want them to go through all the tough stuff that we all went through, that we can avoid. If we can avoid some of the tough stuff on their journey, if we can help with that, then I think that’s a great thing. The rest we can make space for them to discover and overcome on their own. You know? So. Um, yeah, thanks again. I really appreciate it. This has been an amazing chat. We’ve been going for more than an hour and a half, just gone like that, but briliiant.

Alyssa Van Steen 1:40:11
Sorry, but thank you very much. This is it’s been I was so looking forward to this. I was so looking forward to this. So thank you. I’m I’m so grateful for you.

Bill Gasiamis 1:40:25
Well, that’s it for another episode of the recovery after stroke podcast, some stories don’t resolve neatly. They keep unfolding, and Elisa’s is one of them. She’s back at work, she’s driving, she’s walking with support, but she’s also still exhausted, still navigating deficits, still waking up some days needing more time to function than the world expects, and yet she’s showing up for herself, for others and now for this community. If you’re in a season where progress feels invisible, let Alyssa story be proof that healing isn’t about going back.

Bill Gasiamis 1:41:01
It’s about becoming someone new, someone stronger, softer, more aware of what really matters. Thanks again to biones for supporting this episode. For anyone listening who might be dealing with foot drop, there’s actually a way to try the bio nest device in a free one hour trial, just to see if it’s the right fit for you, binance offers trial days at different locations across the United States. Just call to schedule a time we’ll catch you in the next episode.

Intro 1:41:33
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 1:42:02
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Intro 1:42:27
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Final Thoughts and Gratitude

Intro 1:42:54
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