Recovery After Stroke

By Recovery After StrokeEducation

Recovery After Stroke episodes

September 09, 2024 2 Years Post-Stroke: Steve Lawrence’s Inspiring Story of Recovery, High Blood Pressure, and Sensory Overload
Stroke Recovery After 2 Years: Overcoming Hemorrhagic Stroke, High Blood Pressure, and Sensory Overload
Recovering from a stroke is a long and often challenging journey, especially when it involves a hemorrhagic stroke, high blood pressure, and the complications of sensory overload. Two years post-stroke is a significant milestone where survivors reflect on their progress while continuing to adapt to new challenges. In this post, we will explore the journey of stroke recovery after 2 years, focusing on the key areas of overcoming hemorrhagic stroke, managing high blood pressure, and dealing with sensory overload.
Hemorrhagic Stroke Recovery: A Two-Year Milestone
A hemorrhagic stroke occurs when a blood vessel in the brain ruptures, causing bleeding that damages brain tissue. Unlike ischemic strokes, which are caused by a blockage, hemorrhagic strokes are often more severe and can lead to long-term physical and cognitive challenges.
The first two years post-stroke are critical for recovery, as this is when the brain is most capable of neuroplasticity—its ability to form new connections. While the initial stages focus on regaining basic motor skills, survivors often continue to face issues such as weakness, fatigue, and cognitive problems even two years later. Despite these ongoing challenges, many stroke survivors celebrate the progress they’ve made and look forward to continued recovery.
Managing High Blood Pressure After Stroke
High blood pressure is a leading cause of strokes, and for many survivors, it remains a key factor in preventing future strokes. Managing high blood pressure is crucial to maintaining health and avoiding additional medical issues.
Two years after a stroke, lifestyle changes such as adopting a healthy diet, regular exercise, and medication are essential in keeping blood pressure under control. Survivors must continue monitoring their blood pressure and make it a regular part of their health routine to prevent future strokes.
Sensory Overload: A Persistent Challenge
Many stroke survivors deal with sensory overload, a condition where the brain has difficulty processing and filtering sensory information. After two years, survivors may still struggle with environments that feel chaotic or overwhelming, especially in noisy or bright spaces.
To cope with sensory overload, stroke survivors often learn techniques such as mindfulness and deep breathing. Occupational therapy can also help survivors manage these challenges, making daily life more manageable as they continue their stroke recovery journey.
The Importance of Community Support in Stroke Recovery
Community support plays a critical role in stroke recovery, especially after the two-year mark. Connecting with other survivors, whether in-person or online, can provide emotional support and practical advice. Many stroke survivors find that sharing their experiences with others who understand their journey helps them feel less isolated.
Support groups, both in hospitals and online communities, become essential lifelines for those facing the ongoing challenges of stroke recovery. These groups offer encouragement, tips, and inspiration, allowing survivors to feel empowered in their recovery.
Stroke Recovery and Post-Traumatic Growth
Two years after a stroke, many survivors begin to experience post-traumatic growth—a phenomenon where individuals find personal growth and new meaning after a traumatic event. Survivors may find themselves more resilient, empathetic, and grateful for life’s small victories.
At this point, many stroke survivors also take on new roles, such as becoming advocates for stroke awareness or offering support to others going through the early stages of recovery. Finding purpose and hope is essential to long-term recovery, and the two-year mark is often when survivors start to redefine their lives beyond the stroke.
Conclusion: Thriving After 2 Years of Stroke Recovery
Reaching the two-year milestone in stroke recovery is a significant achievement. While challenges like high blood pressure, sensory overload, and lingering physical or cognitive deficits may persist, the progress made in those two years is remarkable. Survivors continue to adapt, learn new coping strategies, and find ways to live fulfilling lives after a stroke.
Stroke recovery is a long-term process, but with the right support, mindset, and management of health issues, life after a stroke can be rich with growth and meaning. Whether you are a stroke survivor or caregiver, the journey of recovery is one of resilience, hope, and continuous progress.
2 Years Post-Stroke Interview With Steve Lawrence
Join Steve as he shares his inspiring 2-year recovery journey after a hemorrhagic stroke. Learn how he battled high blood pressure and sensory overload, and find hope in his resilience.
Facebook
Instagram
Recovery After Stroke Patreon Page
Highlights:
00:00 Introduction
12:08 Hospital Admission and Initial Diagnosis
16:46 Stroke Caused By High Blood Pressure
33:26 Sensory Overload and Hospital Challenges
40:49 Transition to Rehabilitation
47:46 Challenges with Pain Management
1:10:28 Preparation for Etanercept Treatment
1:15:03 Lifestyle Changes and Support 2 Years Post-Stroke
Transcript:
Introduction – 2 Years Post-Stroke

Bill Gasiamis 0:00
Steve, hello everybody, and welcome to episode 319, of the recovery after stroke podcast. In this episode, I’m honored to share the extraordinary journey of Steve Lawrence, who, alongside his wife Donna, has faced the incredible challenges of stroke recovery after experiencing a hemorrhagic stroke. Steve, a drone pilot, was suddenly struck with paralysis and high blood pressure while on the job, which completely altered his life.
Bill Gasiamis 0:29
Two years into his recovery, Steve and Donna reflect on the trials they faced from managing sensory overload in hospital to navigating rehab during the pandemic. Join us as we delve into their powerful story of resilience, the importance of partnership in recovery, and the insights they’ve gained over the last two years. This is an episode you won’t want to miss.
Bill Gasiamis 0:55
Steve and Donna Lawrence, Welcome to the podcast.
Donna Lawrence 0:59
Thank you.
Steve Lawrence 0:59
Hi Bill, thank you.
Bill Gasiamis 1:01
Thanks for being here, guys. I really appreciate it. Let’s start off with Steve. Tell us a little bit about what happened to you.
Steve Lawrence 1:10
Okay, back on June 29th, 2022 I was at work. I work for a television broadcaster in Canada called CBC, and we were doing a national event, and my role as a videographer, camera person was, I’m also a drone pilot, and I was doing the aerials for the event. Unfortunately, the event was very sad occasion. It was a RCMP, which is our national police force. The member was killed back in 2020. I think, 2020 during a massacre that happened here in Nova Scotia. And they were finally getting around to having her funeral. And so it was nationally broadcast, and my role was to to get the aerials for the broadcast and feed it into the program. It was around noon. It was a warm day.
Steve Lawrence 2:16
It was probably 25 Celsius, Sunny and I was I got up from sitting down. When I was tired sitting in a chair, and then when I got up to to move, to get into position where I could see the drone, I noticed my finger didn’t work on the buttons, but I need to control the drone with and then my hand went, and I thought I was having a heat stroke. So I thought, that’ll go away.
Bill Gasiamis 2:52
Sorry, just a sec. Apologies for what I’m about to say. It was 25 degrees you thought you were having a heat stroke?
Steve Lawrence 3:01
Yeah, 25 degrees Celsius.
Bill Gasiamis 3:05
Well, 25 degrees Celsius, where I come from, is barely t shirt and shorts weather. Do you know it’s, it’s kind of warm, but not really. Do you know what? Right?
Steve Lawrence 3:15
Yeah, we’re in Canada. Today was a warm day. We’re like, upper mid 30s. It was really hot today. This is approaching our into summer starts in June here, and it was one of our first really warm days. So I wasn’t really getting used, like we can get pretty warm here, where we live on the east coast, but this was one of our first real warm days it was 25, 26.
Bill Gasiamis 3:44
It’s 77 Fahrenheit.
Steve Lawrence 3:47
Before I go any further, Donna is used to the heat. She’s from the southern part of the United States, so everything I say in Celsius is Greek to her. She has no translation, Donna. She’s used to need degrees, 100 degrees, with humidity, right?
Bill Gasiamis 4:06
I’m going to check in with Donna as well, right? Because 77 Fahrenheit in Melbourne, Australia, that’s like nothing, right? Is it the same down in the southern United States?
Donna Lawrence 4:19
77 yeah, it’s nice.
Bill Gasiamis 4:21
Yeah, it’s just okay.
Donna Lawrence 4:23
It’s like you could get by with long sleeves.
Bill Gasiamis 4:27
Yeah if you had to.
Donna Lawrence 4:29
If you had to, yeah.
Bill Gasiamis 4:32
It’s interesting.
Steve Lawrence 4:33
So for us going through a cold, long winter, it was our first kind of warm week, and so I thought it was heat stroke or something, and I wasn’t sweating or anything, but everything just started to not work. And it started with my finger, in my hand, in my arm, and then I started to walk about 10 steps, and then down I went, and I remember seeing a few things, because I was very aware of what was happening.
Steve Lawrence 5:07
I was flying a drone, and all I was thinking about was, Oh, my God, the drones in the sky. And is there anybody around now, with the drone, we have buttons that we can push that will bring it back to its location. And I couldn’t activate it with my left hand, because that’s the side that had the paralysis, and I was holding the unit with my right hand.
Steve Lawrence 5:36
So how am I going to, I couldn’t get my hand over to it, so I collapsed. And before I fell down, I remember seeing my surroundings, and there was a man coming towards me, and we were in a big open area, like a football field, and but it was like a silhouette approaching me. And I passed out, and I woke up. I don’t know how long I was out, maybe a couple seconds, and he was cradling me in his like he had me. My head was in his arm, and he said, You’re having a stroke.
Steve Lawrence 6:17
And I said, Oh, I couldn’t speak or anything. And I realized, okay, this is not what I thought it was. And he said his name was Bill. And I remember this clearly. He said, My name is Bill. You’re having a stroke. I work for 911, which is our probably the same as you have there. And I’m not calling them. I’m calling the guy on the hill in the ambulance, because I know who that is.
Steve Lawrence 6:46
So he eliminated the whole system of calling through the dispatch. He just called the guy in the ambulance on the hill, and within a minute, they were outside of the event they were covering and brought me into the ambulance, but I was in and out of consciousness for some of that time, and when I came to I still didn’t realize what was happening. The event was a parade of RCMP officers who were in their uniforms. And I don’t know if you ever saw.
Bill Gasiamis 7:24
CMP, tell me about I think I might have, but just tell me what that stands for.
Steve Lawrence 7:29
Well, they’re, they’re called the Canadian Royal, Royal Canadian Mounted Police, so back in the day, they used to be on horses, yeah. And they wear red uniforms, and they’re very distinguishable, if you see one little that’s what their CMP. Some of them, though, were dressed in military fatigues camouflage, and were carrying their weapons. And these weapons were used for some of this, this story that we were covering, that was the funeral fair.
Steve Lawrence 8:07
This was a situation that involved police action with these military weapons. And when I woke up, I thought I got shot by one of these guys. Oh, that was my first instinct, because they were reaching down to pick me up, and I said, was I shot? And they they were laughing, and they go, no, no. And someone tried to offer me a bottle of water, and Bill swatted it away, and he said, No, no, he’s having a stroke. You can’t give him anything, because he could aspirate worse things could happen. So I was very, very lucky that, that had happened to me, but I still wasn’t processing what was happening to me.
Bill Gasiamis 8:50
When you would dealt with after Bill managed to get the right guys over from the hill, you woke up in hospital. Did you end up in hospital after that? Very quickly.
Steve Lawrence 9:05
I did a couple things before that. I started getting sick. And before that, though they were taking my clothes off, and I said, get my phone. But I had to land the drone. Right? I still had that in my head. I had to land the drone, and I remember taking the controller and pushing the button with my face along like that. And I guess it landed because someone on my crew retrieved it. Part of my crew also was listening to me.
Steve Lawrence 9:35
I had a headset on so I could speak to my spotter, and I was speaking to somebody in the satellite truck, and Emma, who was in the satellite truck, came out, and I handed her my phone, and I said, Call Donna. And I don’t know Donna’s phone number. Donna’s got an American phone number that I always just push one. It’s automatic and but I remembered it. I went 423, and I couldn’t like I don’t know how I knew that having a stroke and all this happening, it just came out of me. She called Donna. Donna was home watching the program, and she knew, and she can tell you that this part.
Intro 10:17
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask? If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 10:47
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called ‘Seven questions to ask your doctor about your stroke’. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Donna Lawrence 11:20
Okay, I was watching, they were doing a live on it on Facebook, and I was sitting there, and I was watching it, and I can tell that the drone wasn’t quite angled, right? I’m a photographer too, so I kind of know those angles. So I was like, put it down. Lower it down. You know, you’re not, you’re not doing it right. And I was talking to the phone like he was hearing me, but I thought, something’s not right. That’s not it just didn’t look right. You know, that’s not his shooting.
Steve Lawrence 11:55
And then the phone rang, and it was Emma calling her.
Bill Gasiamis 12:02
How does that phone call go? Donna, how does that phone call go? You answer the phone. It’s Steve’s number.
Hospital Admission and Initial Diagnosis
Donna Lawrence 12:08
Yeah, well, I was already kind of a little flustered that the angle of the camera, and I thought maybe something’s happened to the drone. Maybe it’s having, you know, problems with it, but, she called and she said, there’s been an incident. Steve is okay, but we’re going to put him in an ambulance. He’s going to go to the hospital. And I said, What do you mean he’s okay, but you’re taking him to the hospital? It just didn’t make sense. So then I was like, okay, you know? And then the adrenaline started, and so I started packing a little bag, like a little overnight bag, because I said something may not be right.
Bill Gasiamis 12:54
And then, did you shoot off to meet him at the hospital? Is that the intention of the phone call was it to get you to go there?
Donna Lawrence 13:01
Yeah, at that particular day the car, he had taken the car to work. So I didn’t have a car, and it was probably about 20 minutes into the city. So they had made some phone calls. Emma did. Had made some phone calls back to the station, which the station got the anchor to come to the house to pick me up, because he knew where we lived, and he drove me over to the hospital, and we had gotten there probably about 10 minutes after they had arrived with Steve.
Bill Gasiamis 13:33
What kind of person are you when there’s an emergency? I know there’s certain people I wouldn’t call in an emergency. It’s like, all right, call that person. Don’t call that person. Call that person, avoid that person. Are you cool, calm and collected when it comes to that kind of stuff, or are you do you take things difficult? Is it hard for you to sort of over, overthink about what’s happening?
Donna Lawrence 13:57
No. I was just okay. I gotta get the bag. I gotta get a purse. I gotta do something with the dog. It was just like I knew that things had to be done and not to jump to conclusions, because I didn’t know what was happening. So that was pretty looking back on it now I took it very calmly. You know.
Bill Gasiamis 14:19
You’re on my call list then.
Steve Lawrence 14:22
Yeah, because of that, it saved me. Because when I got in the hospital, I still had no idea what was happening to me, until I got through the main doors and there was a neurologist there, and he was doing this. How many fingers do I have? And can you see me over here? Can you see over here?
Steve Lawrence 14:39
And somewhere in the mix, Donna was standing off to the side, and I saw her, and she was not freaking out, and they had told her that he had a stroke. We didn’t, I don’t know at the time, did we know it was hemorrhagic? We did. So they were kind of narrowing it down to where it was, what kind of stroke it was. But when I saw Donna I just I went, Oh, I’ll be fine. I’ll be okay. She was fine as kind.
Bill Gasiamis 15:06
So she’s calm, you’re calm, and then that that’s a good kind of patient to be it’s good to be calm, because then the doctors can deal with the situation, not with somebody who’s freaking out as well as the situation.
Steve Lawrence 15:19
Right? And I didn’t really worry, because I never had any health problems in the past, other than self inflicted pain from breaking bones and wiping out. And I don’t have any. I didn’t know.
Bill Gasiamis 15:34
Was there any now reflecting back, was there any signs that you think, oh, maybe that was the issue giving me some warning signs. Was there anything like that?
Steve Lawrence 15:47
Yeah, there was times when we were doing things that I would get really sharp pains in my head, and I would mention it to Donna, I say Oh, that was weird. It was just like someone took a hammer to a metal plate. Ding, you know, zingers. And it was always on that side. It was on this side my head, yeah, the stroke happened. It was inter cerebral hemorrhage happened on the right, but everything on my left pretty much went paralyzed.
Steve Lawrence 16:17
And so if I was to look back and see if there were any signs that might have been something that was saying, hey, but it was all during this pandemic, and we didn’t have doctors to go to. It was just phone calls. I never was hooked up to a blood pressure machine in years. I didn’t have someone checking me other than a phone call. And I was, well, try taking the Tylenol a stuff like that.
Stroke Caused By High Blood Pressure

Bill Gasiamis 16:47
Yeah. So what was the underlying cause? Steve, what did they discover caused the bleed?
Steve Lawrence 16:53
It was high blood pressure. In my case, it was extremely high. It was I broke down because of 212 over 105 so all I knew before strokes at 120 is the number you’re supposed to be in and around. If you get too low, then you could faint. If you get a little higher than that, you might whatever, but 212 sounds like a really, really high number. And in my case, it was. How long has it been going that way? Could have been years. I don’t know. I never knew, but high blood pressure does run in my family. This came out afterwards that I found out that my mom and my brothers have it, but it wasn’t something that they didn’t have a stroke, it was just take pills and manage it.
Bill Gasiamis 17:43
It’s often made worse by smoking or drinking. Were you a smoker or a drinker or anything like that? Overweight?
Steve Lawrence 17:50
I’d have the odd beer, like once a week with my buddies, but it would that would be at just one or two. No smoking, never.
Bill Gasiamis 17:59
I know how I had the bleed. How old were you when that happened?
Steve Lawrence 18:05
I was 56 and that was when it happened.
Bill Gasiamis 18:10
And as far as you knew, and everybody else knew looking at you, everything looked and seemed okay, and you didn’t have any concerns about your health prior to that say and and have regular contact with doctors or GPS or anybody,
Steve Lawrence 18:27
Nope and even when I did go to the doctor before the pandemic, things kind of changed. The hands on stuff wasn’t the same. It was kind of, you go in, you spend 10 minutes in the office, and then next, I had did some injuries to myself from work with my back and my shoulder. I had broken that and then that was just referred off to a specialist, so, but as far as.
Bill Gasiamis 19:03
Blood pressure or any of that stuff.
Steve Lawrence 19:05
No, no, nothing like that. So when I heard that I had a stroke, it was like now my grandmother, she was 100 she almost made it to 102. and she was having TIAs, but she’d go to the hospital and be back home for supper, and I thought, okay, that’s what’s going to happen to me. And then one of the funny things that comes out of this is the doctor, neurologist asked me as he was leaving, he said, Is there anything you want to know? Do you have any questions? And I said, Yeah, Donna and I are planning to go down to Tennessee in August or September, so a couple more months, will I be able to drive down there? And he just looked at me and said. You, young man, are not going to be driving from many calendars.
Steve Lawrence 20:05
That, if that didn’t give me a stroke, then it was, it was like, what does that even mean? They’re not going to be driving from many calendars. So I went back and then tried to process that, like, Is this really going to be that bad? And it wasn’t really until later. I think that week I was or maybe that day, I was laying in bed in the emergency and it must have been that day, and I kicked my left leg. And I didn’t know it was me kicking my left leg. I couldn’t feel it. And I said, who’s in bed with me? This that sounds funny.
Donna Lawrence 20:46
Because your right leg knew that you hit something, but your left leg wasn’t talking back.
Steve Lawrence 20:50
But I was looking around saying, who’s in bed with me. Now, I didn’t lose any perception of vision or speaking. It was mostly just physical, very like limp, no feeling at all. So when I kicked it, didn’t know it was my leg I was kicking it.
Bill Gasiamis 21:09
I can relate to that. I’ve still have that issue 12 years later. It’s not, it’s not like I completely don’t know. It’s like there’s not enough information coming back to my brain to say your leg is in the wrong position. So often, if we go out to dinner, and you know, you sit on those tables with lots of people, and sometimes there’s a table leg in the middle of where you are, because you’re at the table leg part of the seat.
Bill Gasiamis 21:41
And then I’ll go to shift over to the left to get out of the table or to the right, and my leg will be stuck where the leg, my leg will be stuck at the table leg, and I’ll be trying to move, and I won’t know that my leg is there, and I won’t be I won’t be able to take to slide, and I’m just trying to work out. Oh, why am I not sliding? Ah, okay, I look down and my leg is stuck behind the table leg. So it still happens, and it’s very weird. It’s still something I haven’t completely gotten used to. I still go into automatic mode when I think about trying to get up from the table and walk away.
Bill Gasiamis 22:22
Donna, what’s it like when you go to the hospital and you receive the news that your husband has had a stroke? Like, what’s it like to be a spouse and receive that information? And when I say spouse, what I mean is like to see the person that you love on the other side of the bed in that state, what was that experience like?
Donna Lawrence 22:47
It was so funny, because I guess the adrenaline at that point had went away and strength came, and I knew that I had to be the pillow of, and I say the pillow because he had to lean on me. I mean, I had to be that person for him that was going to keep him happy, keep him smiling, keep him lifted, not worry about anything, take one day at a time.
Bill Gasiamis 23:15
The role, I think, that the caregivers play, is really important, like Steph said earlier, a it’s important to become it’s important to be able to step up and say, you know, I’ve we’ve got this. You can lean on me. I’m going to be able to help you through this, even if it’s not true, even if you don’t know that you can do it.
Bill Gasiamis 23:37
It’s important to be able to at least say it in that time. And then if you can pull it off, that’s great. If you can’t pull it off, then it’s important to get the resources around you guys to support each other, so that you both have support in that situation. And as far as you had known, had you ever dealt with anybody? Had had a stroke before, or known anybody, or met anybody?
Donna Lawrence 24:00
Yeah, probably, I don’t know, maybe 25 years ago, my dad had two strokes, two ischemic strokes, his affected his speech, but with rehab, within a few months, he was okay. So his was not severe, but it was, you know, it was severe at the time, but it he got through it. So that was the only person that I knew of that had had strokes. And I had never really heard of anybody having a hemorrhagic stroke. I mean, like, Tell me more. What does this mean, you know, and it was the big brain bleed in the center of the brain that they couldn’t do anything. They just kind of just let it go, yeah, let it heal itself, right?
Bill Gasiamis 24:51
Okay, so obviously, they medicated Steve. They’ve given you the blood pressure medication. They’ve realized that it was high. They would have brought your blood pressure down. At some point and stabilized it, and then they just let it heal and monitored it. Steve.
Steve Lawrence 25:05
Yeah, there was no snow going in and stopping it, which was kind of scary when you I thought about it, they didn’t. I remember say, if we go in, it’ll do worse damage by cutting your head open and going in and trying to clamp it off or whatever.
Steve Lawrence 25:21
There was no drug that they could give us, whatever that drug got a shot that would these, that’s for clots, they said, nothing that they could do, so we’re going to let it bleed out. And so I remember there was a number that I heard later that I had a 30% chance of making it 33 or 30% something like that. So I it didn’t hit me. I didn’t go, oh my god, this is my last moments. I didn’t, didn’t clue in. But looking back on it, I’m like, wow, like I was close to the end, and I didn’t know it.
Donna Lawrence 26:07
It too is. It’s kind of like the old saying you gotta be in the right place the right time, if he had been on a shoot, say, three hours from here, which that’s a common occurrence, maybe on the coast, and and two to three hours away from a hospital, yeah, much less than ambulance. I mean, the outcome would have been a lot worse.
Steve Lawrence 26:36
Yeah, the job I had, I was never in the city, usually I’m in the sky, I’m on the water, I’m in the woods and far away from my base, traveling.
Bill Gasiamis 26:50
This clearly, is not around paramedics who are on standby just over the hill.
Steve Lawrence 26:55
No, and to be scooped up by the guy who knows 911, and it’s all like intervention stepped in, and I never really looked at it like that until afterwards, like the blessings in life that kept us alive, kept kept me alive, and having Donna in my life, Donna was Not working. She moved up from the United States. Her family’s still down there, and she moved here for me, and she was a homemaker, and we were able to live on my income, and I would come home every day, and everything was perfect. Now I’m in the hospital, and she was able to come in every day before I woke up. She was there when I went to sleep. She was there every day.
Bill Gasiamis 27:50
Yeah, that’s very useful, isn’t it? It’s very helpful when somebody, when you wake up and things are weird and scary and you don’t know what’s happening, and then there’s a calming voice in the room with you, just checking in, making sure that everything is okay. How, how did you play that role? Donna, what did you feel like your role was?
Donna Lawrence 28:11
Oh, my role is just to be like, I’ve always been to him, but kind of amped up the little volume a little bit, because I had to do everything. I mean, I was for weeks. I had to feed him. He couldn’t, he couldn’t function, you know, so it’s, I took the role of a lot, a lot, and the nurses saw me come in, and there it was almost like a calming effect to him. They’re like, oh god, dude, she’s here. She’s like, there’s one patient that I don’t have to do everything for because she’s here.
Bill Gasiamis 28:46
Right? Okay, so he couldn’t eat. He couldn’t eat at that stage. Couldn’t get up, couldn’t move any of the left side.
Donna Lawrence 28:55
They had to hoist him. They’ve got one of these things. And I wish I knew the crane part. They they would, they would scoop this little thing under him, and they would hoist him up and bring him over and dropped him in, not drop, but placed him in a wheelchair, and then I took the role of pushing it. You know, we would go on walks and things. We didn’t get to stay out very long because it then was hot, and then he just was very fatigued, very fatigued.
Steve Lawrence 29:29
And I wasn’t walking. I was in the chair, yeah, but I was a bit bigger than I am now. I’m down to what I should have been, I guess, in weight. But I was 222 pounds, 511 and a bit. So now I’m down to 180 I just checked before I came in, and that’s where I was most my life. But I think as when I turned 50, I started putting on a little more weight and wasn’t paying attention.
Steve Lawrence 30:03
Diet was a big thing. Eating on the road, a lot of work, you don’t sitting, you’re not coming home, you’re traveling, you’re just going to eat where you can eat at your desk, inhaling whatever you can get. So and a lot of things work was, my work was very stressful, but I didn’t really pay attention to it being stressful.
Bill Gasiamis 30:28
Just a quick break, and we’ll be right back with Steve’s remarkable journey. But before we continue, I wanted to remind you about my book “The unexpected way that a stroke became the best thing that happened”. It’s not just a collection of stories. It’s a guide on how to achieve post traumatic growth after stroke. The concept of post traumatic growth, or PTG, was first coined by Dr Richard Tedeschi and Dr Lawrence Calhoun in the in 1995 and my book builds on the groundbreaking work.
Bill Gasiamis 31:00
In it, I share my own recovery journey and those of others who turn their challenges into powerful opportunities for growth. If you’re looking for practical science backed steps to move forward after stroke, this book is for you. You can grab your copy on Amazon by typing my name, Bill Gasiamis, into the search bar or head over to recoveryafterstroke.com/book.
Bill Gasiamis 31:26
So it’s high intensity, right? Because it’s about getting the right shot, the right time, being at the right place, all that stuff. It’s all about getting it back to the station as quickly as possible. It’s forever changing, especially in a scene like that, where there’s people everywhere and a parade to focus on, it’s just constant, and it’s not about you, really, it’s about footage. So everyone puts a lot of effort in. I interviewed a reporter a few years ago, Mike Smith, and he was telling me that his hours were just ridiculous. As a reporter, he was working all hours in every hour of the day, and he had no life other than work because it was so consuming, so over the top consuming.
Steve Lawrence 32:19
That’s what was happening to me, and I didn’t realize it until after I had my stroke, and look back and say, but I was working eight to 10 hours a day at work, and then I was coming home. Donna’s been sitting here patiently all day waiting for me. She’s got supper ready. She’s taking care of the house and taking care of all of our affairs. And she just wants to have a conversation, how was your day? And I take out the laptop and I continue working.
Steve Lawrence 32:50
I mean, taking in stuff I wasn’t able to finish at work, yeah, and doing it at home, so making sure everybody at work has got all the stuff they need. And I never stopped, I never turned it off. And there are a lot of people at work that are still like that, and it was a wake up call. A few of my friends that have are in similar situations with workflow, and they went, Whoa, it’s bundle Facebook, and they drink and they live different lives. Work was a big thing.
Sensory Overload and Hospital Challenges
Bill Gasiamis 33:26
Yeah, so when you woke up with all of the deficits, you can’t eat, you can’t walk, what was the rest of the process like? Did you do rehab? How long was that for? And where was that?
Steve Lawrence 33:41
Okay, so the hospital I was in was in the city, and for Donna, every day she would come in, and she had to learn how to drive my car, because my car was a annual standard. We call them six speed. And she did that. She did pretty good. My hospital stay was five weeks, I think, but it was hell on earth, to be blunt. I like I thought it was going to die there because of the noise, all the confusion going on, and there was a man that died next to me the night after I got in, he had passed away from a stroke, and was still there the next morning when Donna walked in and all the commotion of everything going on, the beeps, the buzzers, the noises, the smells, I didn’t think I was going to make it.
Bill Gasiamis 34:37
And wow. So it was that intense, the sensory overload was that intensive? You felt really unwell about it. That’s so interesting, because obviously lots of stroke survivors, brain injury survivors comment about the sensory overload from light, sound and all that kind of stuff. And you’re in a hospital where you’re meant to be cared for and looked after. Nobody’s considering a. That side of it for you at all are they? They’re just not tuned into how much harder it is to experience all that sensor sensation with an injured brain.
Steve Lawrence 35:13
No, they would come in in the morning, and it was a routine, but they turned the lights on and the buzzers all night long, people are moaning and groaning, and some were in different for different reasons, and but I found out that I was going to go to rehab, which was another building down about five minutes away from the hospital, and it was just like waiting for to get that call. Let’s say we got a bed, and once that day happened, it was like I won the law.
Bill Gasiamis 35:48
They were out of there.
Steve Lawrence 35:51
I was out of there. It wasn’t that easy, but I’ll get to that instead.
Donna Lawrence 35:55
They, he typically when, or typically when they have a stroke at this particular hospital, they’ll bring them from the ER straight up to a certain floor that’s called the stroke floor, because that is the unit that they particularly are just fully involved in strokes. So there’s, there was a lot of patients, and at that time, even that was kind of mid covid, I would say there was a lot of covid patients in there that also had had a stroke, and it was just, it was kind of scary, because you seen all these signs saying, covid Dress up, you know.
Donna Lawrence 36:38
You had to put on all The little mask and the, what do they call it? The gams and things that that doctors had to put on to go into the room. So that was scary, because I thought I’m going to come out of here with covid, and then I won’t be able to see him.
Bill Gasiamis 36:56
Yes, she goes out to all the covid era patients of any illness, because I heard so many of those stories where people had their stroke, condition, situation made even worse by all of the challenges that were related to that. I can’t imagine what that would have been like. We went through a lot of tough times for over three brain brain hemorrhages, brain surgery. My mother in law passed away at the a week or two before my brain surgery, so we had to have the funeral, and then brain surgery and throwing a pandemic into the mix, I can’t imagine like how much harder that would have made the whole situation which was already terribly hard.
Donna Lawrence 37:44
Right? I mean, a stroke is a new thing, you know, especially if you’ve never had one, or had any, any person around you that had one. So going through that and learning how to cope with that, and then, plus the pandemic that that was totally what do you do? You know, it was just a lot of scary things, a lot of scary things.
Steve Lawrence 38:04
And Donna was the only person I had a connection with, but the doctors and stuff were just so overwhelming. But without Donna there, every day.
Donna Lawrence 38:13
I had to be the advocate.
Steve Lawrence 38:15
Yeah, she really did have to do things for me.
Bill Gasiamis 38:18
Yes, the advocate is important role under normal circumstances, but when the doctors and the nurses are run off their feet, even more so than they normally are, because of the stuff they got to deal with with the pandemic, then Steve’s easy, forgotten, like.
Donna Lawrence 38:37
And you have to and it would still be if something happened today in the pandemic was not going on. I mean, it’s still a little bit, but you gotta be on top of what the doctors or the nurses are telling you. You got to either take notes or try to remember it. Because I caught two or three nurse practitioners and nurses that told us one thing, and then the next day told us another. And I’m like, No, you told me that the numbers are. You told me this medicine was for the you know? And so it was like, I wasn’t trying to correct them, but correct me if I’m wrong, what I need to believe. You know?
Bill Gasiamis 39:19
Yeah, it’s really important, Steve, you finally get out of the hospital ward, and then you’re going into rehab. Tell me about the rehab experience. What was it like to really first, for the first time in a long time, like not be able to use any of your left side?
Steve Lawrence 39:39
Yeah, So it was during the hospital stay that I realized that I can’t stand up by myself, that I had to get the crane pick me out of bed, put me down, and then they tried to do some rehab in the hospital, when I went out in the hallway to walk. Collapsed, but they caught me. I was it, but what I found out, I did was, what’s that nerve, the vagus nerve? Is that something you ever heard of?
Bill Gasiamis 40:09
Yeah, the wandering nerve. It’s the nerve that connects all your organs. Every single part of your body is connected to the vagus nerve.
Steve Lawrence 40:17
Well, I triggered that, and boom, down I went. They were there to hold me, but it was, it’s, I had that happen to me a couple times, and I thought, Oh, my God, if every time I stand up, this is going to happen, it can’t go on.
Bill Gasiamis 40:30
And what happened? What did you feel?
Steve Lawrence 40:32
You just all, you just lose all control. Everybody switches off your bodily functions, your muscle tone.
Donna Lawrence 40:41
It’s like you faint, yeah.
Steve Lawrence 40:42
It’s like a faint, yeah.
Bill Gasiamis 40:45
Right, okay, switches off, yeah.
Transition to Rehabilitation Before 2 Years Post-Stroke
Steve Lawrence 40:49
So I get the word that I’m going to the rehab yay. It packed me up, and that took about a day to get everything coordinated. And we go over there and the rehab building, I’ve been in it before for doing stories that I have done in the past about people who’ve had injuries that needed rehab. And I knew it was a really good place, but where I was going to be in a room it was institutional, like I felt like I was coming from one bad place and going into another. And I got in a room with four guys, and there’s, there was no quiet.
Steve Lawrence 41:31
I was thinking this is where I gonna get some rest and this is what I need for my head, and the guy next to me from middle east, I was think he was from Afghanistan and the guy on the another side is local and the guy next to me was dying of something but I dont know if he survived, he was moaning and groaning and I don’t know if he had a stroke if he had something up, but there’s a guy next to me on the side who was calling his family in the middle east, at 3 o’clock in the morning which supposed to be I’m dead asleep, and he was yelling and because I thought he had it as scream, that made them hear the connection out of work.
Bill Gasiamis 41:34
That’s just, just so, you know. But when my family talk to people overseas, they do talk a bit louder. It’s just to make their voice travel somewhere quick or something. I made like it’s to hit the satellite better. I don’t know why, but the voice goes up. And also, if you’re from one of those kind of backgrounds, you’re born with a voice that’s louder, just by default, you’re about, you know, 20% louder than the normal person, right? And you, and often, Steve, you piss people off, right? So I do that like I have a normal conversation with my wife then she says, why are you yelling, dude, we’re just talking. I haven’t yelled yet. And that’s, that’s all he was doing. He was just being normal, yeah.
Steve Lawrence 43:06
I realized that.
Bill Gasiamis 43:07
But at three in the morning, it’s tough.
Steve Lawrence 43:10
Yeah my brain was having a hard time with all the different noises and sensations, and he couldn’t speak english very well and so when he wasn’t talking to them he was on his iPad or tablet, listening to children’s programing like Dora The Explorer. It was a riot when you think about it, but he was learning how to speak english through these children’s programs.
Steve Lawrence 43:36
And so I hear in the morning, Teletubies, or whatever it was or Dora he was repeating it so I’m like oh good God help me, take me out of here. And my work plant that I have pays for a semi-private room so Donna was right on that and she’s like why is he in here with four people, you’re lucky you got a bed. True we were lucky we got a bed and they get me down to the gym that they have there and I meet the lady that would teach me how to walk again, and she’s been at it for some years, she’s about 5 foot zero and I thought there’s no way she can hold me up, there’s no way.
Steve Lawrence 44:17
And they did a video it was incredible like to see me in my first steps again with her right behind me every bit of the way but the rehab I started to make gains and I with physical stuff. And my left leg, I can’t move arm quiet a long time.
Bill Gasiamis 44:22
Your left leg is what situation now?
Steve Lawrence 45:07
My arm, oh, I can walk, it’s but I worked really hard to get my mobility back, and I thought I was doing it too fast, because I was getting a lot of pain. And I was saying to them, is this what I never had stroke before? So I don’t know. Is this is normal to have this pain? And they’re like, then they start poking me with different things and thinking, it’ll go away.
Steve Lawrence 45:38
We’ll give you some pills. And so they loaded me up with, I had to write it down, amitriptyline, Gabby penaltra, simple Cymbalta, and that was the worst one that this made me a zombie. It was bad, and the pain didn’t go away. Wiped you out. Yeah, pain didn’t go away at all. But I still had the pain and taking all this medicine, and I’m just, I wake up after sleeping and I want to go back to bed again. Fatigue was huge, but the rehab I ended up getting, I don’t know if Donna was behind this, but she kept saying, like, he gets a private or gets a semi private room.
Donna Lawrence 46:26
Have to talk to a Head guy.
Steve Lawrence 46:28
The head dude. And one day a nurse came in, and she just started grabbing all my stuff out of the room. And I thought, Oh, we pissed somebody off, like, I’m going back to the hospital. And they, they literally wheeled me out of the room in my bed, like I’m still laying in bed waking up, like, what’s going on? And she puts me into this, I thought was a closet, and it was my own bed, my own room, my and she said, No, you’re going to have this now and I didn’t care how big it was, but I could close the door, and I could shut everything else. And so the last five weeks of rehab, I had a private room that’s and it was good, because Donna could come into the room where, when at the hospital, she could come in, but at rehab she couldn’t, because it was shared.
Bill Gasiamis 47:19
Yeah, too many people. That’s so good. I remember also having all of those troubles in the hospital ward and then going into rehab and having my own room in rehab. It was such a relief. It’s where I actually rested. It took, you know, a good two or three weeks to actually rest, and I was in rehab for four weeks, so even though they were fatiguing me when I was trying to learn how to walk again and all that stuff.
Challenges with Pain Management: 2 Years Post-Stroke
Bill Gasiamis 47:46
At least I could go into my room and there was no buzzers and there was no people whinging and moaning and talking to Afghanistan at three in the morning. It was just me, and it was so good to have that space. It’s where I think why most of my recovery was possible? Definitely. Why? Tell me about the Michael Jackson glove that you’re wearing?
Steve Lawrence 48:11
Yeah, really. Well, this is back to the pain. They still haven’t gotten to the bottom of it, and it wasn’t until about a couple months ago, they thought, because most of the pain I have is in my butt, right in my butt, kind of deep in the cheek, and then down behind my leg, in my calf, and then right into my foot. And they thought it’s your sciatic nerve. And then why is this hurt shoulder, my shoulder and my arm. And it wasn’t until I went to an orthopedic surgeon who was a second opinion, they were going to cut me open and do a dissectomy in my spine.
Steve Lawrence 48:55
Because I do have, Well, where your vertebraes are in between you have bulging discs. They take the take the vertebrae and take it out and put an artificial one in, and then hopefully takes the pressure off of the nerve that the bulging part of the nerve. Yeah, I do have that based on an MRI. It’s very slight, but one doctor said it could be really slight, and it’s like a hangnail on your hand that it feels like your fingers amputated if you it gets too bad, but it could be really bad, and you don’t notice it, so I’m going to get you a second opinion.
Steve Lawrence 49:43
And the second opinion orthopedic guy said, You know what? He said, have you talked to your neurologist about this? And I said, neurologist, I haven’t seen a neurologist since the moment I walked in the hospital. He said, What? And I said, No. He said. Wrote a referral right away. He said, I’m going to get you to see her. You need to see a neurologist. He said, what the pain you have is nothing to do with this. It’s see central post stroke, stroke pain.
Steve Lawrence 50:14
That’s what he thought of. And so that’s when I started looking into that more, and that’s how I come across your videos, and other people, I’m like, What is this thing called central post stroke pain? I saw that 60 minutes in Australia, did a feature on a woman. And so then I really started digging deeper. And I’ve I’ve found you, I’ve found other people. I’ve talked to people that have had the treatment in Florida for different things.
Bill Gasiamis 50:46
We’ll talk about a tennercept in a second. Post stroke, pain is so common. I’ve met people on the podcast who have opted to have a foot amputated to get rid of the pain. It’s that, that’s what I it’s dramatic. Sarah Curley, that interview was stunning, because I just couldn’t believe who I was going to interview and why I was going to interview her. And then, if you watched that interview, or if you heard Sarah talk about it.
Bill Gasiamis 51:23
There has been no better decision that she has made in her life than to remove her foot, and the pain went away, and she’s just, uh, massive advocate for it. And I was like, I can’t I can’t wrap my head around it still, but I also have never been in the amount of pain that Sarah must have been in. Now I get left-side pain, and my foot is always kind of stiff and tight. The ball of the foot kind of always aches. My left hand aches. But I’ve never had to take painkillers. I can almost ignore it if I focus on something else, it kind of, it’s not in my mind.
Bill Gasiamis 52:05
And then I’ve had people reach out to me because they heard Sarah’s interview and said, Can you put me in touch with Sarah? Because I think I need to go after that particular solution as well. So I end up, I don’t know what it’s like, but I can appreciate that people after stroke do experience pain. A friend of mine has a daughter who experienced a stroke when she was 17, Brain Hemorrhage as well, and everything was going well, and her recovery was doing great. And then at around about the seven or eight month mark, she started to feel pain.
Bill Gasiamis 52:45
And what they were saying was, as the brain started to heal and started to come back online, things were settling down, but one of the things that was triggered for her to feel as other things started to settle down was the pain that was there, and it’s kind of and it’s not. It’s not. This is the hard part about it. It’s actually not real, because it’s not the pain is not saying, warning you have done something to injure yourself.
Bill Gasiamis 53:18
Do something about it. It’s just like a an incorrectly wired part of the brain now that’s triggering the pain mechanism for no reason that’s urgent that you need to take care of. It’s just accidentally kind of switched on, and now it’s a case of, how do they switch it off? So I can appreciate it, and I’m really surprised. Well, I’m not during covid. I’m not surprised that you didn’t end up seeing a neurologist during that era, but it’s often I speak to stroke survivors who have not seen Well, I didn’t see many people even during my visits to the hospital over the three years that I was going through it, because my incidents were on again, off again.
Bill Gasiamis 54:09
There wasn’t, there was too many people involved in my in my acute presentation. So when I was there experiencing the bleed, I would get treated, etc, and then they’ll be like, Okay, we’re going to monitor you, catch you later, see you later.
But they never said, What are your deficits, or what are your cognitive issues, or any of that stuff. They just treated the bleed and then sent me home. So we had to do the same thing. We had to find out, who else do we need to speak to? Like, what else can I do to make this better? Who asked? I have to follow up with we were just it was just missed. It was just one of those things, you know. And it wasn’t even during a crazy pandemic period.
Bill Gasiamis 54:54
It was, I would say, in one of the best times to be unwell in. Hospital in Melbourne, things were great but, but it’s good that you guys have worked it out, and you’ve continued to advocate and get second opinions and keep asking questions and being curious, searching for more information online. That’s the reason why the podcast exists, because I was lacking a lot of the information that stroke survivors still lack. So it was like, what, how do how do I do that is, I put it out there caregivers.
Bill Gasiamis 55:27
It’s important for caregivers as well, so that they can navigate how to support their loved one and how to advocate on their behalf in the hospital when their loved one can’t advocate. Yes, so the way I came across a tannercept was in the very early years of my recovery, and immediately it’s it triggered that hope, that spark for hope. Ah, okay, so I haven’t been there yet, and I really would love to go and see Dr tobinick.
Bill Gasiamis 56:09
And first what I had to get out of my head was whether or not it was legitimate or not, because there was a lot of terrible talk about what he does over there, even after the 60 Minutes interview that was done now, I’m pretty sure it was done around nine years ago here in Australia about his particular treatment. And I, I am not in a position to raise the money to travel from Australia to Florida to get the injections, to come back to all of that. I’m not in that position yet, and I am not in the kind of pain where I have to 100% try and get it sorted.
Bill Gasiamis 56:55
Because, like I said, sometimes I can not notice how my left side feels if I’m distracted enough by the tasks that I’m doing, whatever. So when you found the interview, how did you react? What did you think about that when you see something like that, when you’re experiencing the kind of challenges that you are?
Steve Lawrence 57:17
Well, the part journalist in me needed to know more, and I did the research. And first person I would talk to about was Donna. I said, Let’s watch this. Look at this, this might be what I need.
Donna Lawrence 57:32
It’s about what three months, four months ago.
Steve Lawrence 57:34
Could have been. Yeah, Donna didn’t really she’s she’s more familiar with how things go on in the United States with the healthcare system, and she had a lot more skeptical moments about it. She’s but it wasn’t until the last couple months, I’ve actually been in contact with people who’ve had the treatment, the lady that had aphasia. She was on the 60 minute story. I tracked her down, and she called me. She called me, and we had a talk with her about two a month ago for a good hour. And she said, not the same thing.
Steve Lawrence 58:18
She said, I was skeptical. I thought that was the way my life was going to be, but they had the means to be able to travel down and try it and, well, you see the result. It worked in the video. Then you go online and read a little more, and there’s a lot of skeptical, like, oh, that’s just witchcraft, or those people are actors or, and I’m like, No, this is real. I know the pain. And when they were getting down to like, the details of like my teeth hurt on my left side, like when I chew, how would they know that in your taste, the taste, the detail of my fingernails feel like they’ve been all chopped off like that, that detail of pain. How can someone else know that.
Steve Lawrence 59:00
And they’ve had this treatment. And one of the guys that just came back last week from there, he, I think he was commenting on in your group, on your podcast and on YouTube, and he said, I’m going down in July. And I replied, Let us know how it goes, because at that point I was really looking into it. And the end of July happened last week, and I sent him a note underneath his comment, I’m going down in July, and he said, I’m just on my way back. I have lots to say about it. And I went, Oh, right on, this is what I want to I want to hear this. Found out the guy lives an hour away from me, and we talked on the phone.
Steve Lawrence 59:51
Yeah, the other day, this guy is done his homework. He’s a. High Level paramedic who’s researched everything. He’d studied, all the journals, all the medical stuff, had the discussions with his family and people, and said, we’ve got the means. Let’s, let’s make it, see if it works. And he’s, he’s noticed a difference, and like we all have different deficits.
Steve Lawrence 1:00:22
Mine, people look at me and go, wow, you had hemorrhagic stroke and you’re walking and you’re moving. And I’m like, but I wasn’t two years ago. But I have a lot of residual issues, the pain. You can’t explain that to somebody no like Donna sees it in me. She sees the fatigue, but I still cannot. And so you asked about the glove earlier. This is maybe it’s in my head, but it’s a compression glove, and it’s, it’s helping with the nerves.
Bill Gasiamis 1:00:56
It’s not in your head. No, it’s legitimate.
Steve Lawrence 1:00:59
It really is, and sometimes I wear the sleeves that goes right up here, and it helps. And I have one for my leg. It knocks it down a bit. So back to the intercept. Katanas up. I’ve talked to these people. I talked to Linda, I talked to the 60 minutes producer. I’ve talked to other people who been there. Met the doctor. I talked to the doctor. We had a conversation with him for an hour a couple weeks ago. I’m scheduled now to go down in September. I have one more thing to do, a test to make sure that I’m they have to do a TB test tuberculosis.
Steve Lawrence 1:01:36
I have that on Monday or Tuesday, and if I if I’m good with that, then we’re going to make a trip down. My goal is to take what pain I have I can function like on about a six or seven pain. Some days I’m at an eight, especially with the weather, I’ve noticed, yeah, we have different climate here in the weather.
Bill Gasiamis 1:02:04
Okay, so the cold. How does the cold effect? Because I hate the cold. We get quite cold here in in Melbourne. So the last few weeks, wake up in the morning, it’s one degree Celsius or two or three, and through the day, I might get to 13 or 12 or whatever, and I feel way more pain and way more kind of irritation on my left side than I would in summer. I love summer. It could be 37 degrees, and I’m loving it, you know, there’s no problem. So how is that dealing with the temperature fluctuation for you? Because you guys get really cold up there. We do. Yeah.
Steve Lawrence 1:02:41
We get really cold in the winter, minus 20 to Celsius. That’s not as bad as when it’s around zero, it’s more there’s more moisture in the air, then when it’s really, really cold, it’s dry, the humidity is not high, but when it’s around zero, there’s a lot we’re right on the ocean. So there’s more humidity with the fog and the dampness that I can feel the weather before it hits the weather comes, or if it’s raining, yeah. So the other day, it was raining, and it was, it was quite sore. So if, I can get pain knocked down from an eight to a five or a four, I can probably live fine with that like you are.
Bill Gasiamis 1:03:24
That’s a win.
Steve Lawrence 1:03:25
You know you’re you’re managing, and so we have the resources. We’ve got a family in the States, we can go down and make a vacation out of it and see her, her family. And things just came together in the last last year, my mom passed away during all of this. And I know my mom would want me to have this done, because every day I saw her, she was always like, Steve, how’s your pain today, dear? And I’m like, you know, it’s alright, mom.
Steve Lawrence 1:03:55
She got it. She ended up dying of brain cancer suddenly, like it was, within months she was diagnosed and and she died very peacefully. She didn’t suffer. She was able to talk to us and live comfortable life right up to the very end. And she knew and she would want me to do this.
Bill Gasiamis 1:04:19
I feel like everybody says, what I’d like to encourage everybody to do is, I know that’s not within everyone’s means to go and get $19,000 worth of etanocept shots, you know, at Doctor Tobik. So I get that. And that being said, like, I still think everybody should go after every single bit of recovery they can get from wherever they can get it and do anything they have to do to get it.
Bill Gasiamis 1:04:44
That’s why I like talking about a tennis set, because the podcast, previously to this, shares stories. It’s amazing, like it does give a lot of hope and support to people who have had a stroke and are learning about their condition and how people deal with it and how they might overcome it. Uh, but the really, the real thing I want to do is I want to be able to say, here’s a potential solution for you. Or some people go and check that out, and that’s what that interview that I did with Andrew, or I spoke to him too.
Bill Gasiamis 1:05:16
Yeah, Andrew’s awesome that I that I did, like episode, oh, man, I forget what it was now, but it’s easy to find. If anyone wants to know what it is, they can just, they can just look at the show notes. So the so the idea is, like to help people actually solve their problems. That’s the whole point. And the thing about etanercept, the issues with it. You know about this by now, but for people who are listening, who might have just come across a toner sept and are curious about it, is that it’s out of patent.
Bill Gasiamis 1:05:53
So it’s been used for decades, literally decades, to help people treat rheumatoid arthritis and decrease the inflammation. It’s extremely well tested, but for people who are using it for rheumatoid arthritis for many, many decades, there’s a low risk of causing bleeds in the brain. I’m pretty sure, because of the use of it and the continuous use of it, it does have a negative effect after many, many years, and the doses that rheumatoid arthritis people get are so much higher than the doses that stroke survivors get and they get over a prolonged period of time. So there’s a little bit of concern about that.
Bill Gasiamis 1:06:33
And there’s no research being done, I know Dr. Tobinick is involved in doing a study and reporting back on the findings that he’s been able to achieve through the injections that he’s given so far to his private patients. But there’s not enough people funding studies for stroke, and there is one study in Australia that I’ve heard of that’s being done at the moment. I’m not sure what phase it’s at, and whether or not they’ve been able to report positively on the outcomes yet. So that’s the that’s the challenge with it. And for some people, it won’t work. And I think I understand why it won’t work, right?
Bill Gasiamis 1:07:17
So a little while ago, I did an awesome interview about hyperbaric oxygen therapy with a gentleman who is a doctor who His name is Amir Hadani, and the organization he works for have, they have therapy centers in the United States, in Israel, and I think In one other part of the world, I’m not exactly sure now, but the difference between Dr. Amir’s procedure and process, as opposed to Dr. Tobinick is the hyperbaric oxygen therapy center does a whole bunch of neurological scans to determine whether or not you are a candidate by looking for what they call penumbras.
Bill Gasiamis 1:08:07
Penumbras are areas of the brain that are kind of switched off as a result of the injury, but are likely to switch back on once the therapy is provided. And what you do is say you wanted to go and get hyperbaric oxygen therapy. It’s a two month course. I’m pretty sure it’s a two month course, daily oxygen therapy. And if you qualify, they know that you are likely to get a positive outcome before you start the procedure. So if you think about it like it makes it kind of a little more a little more legitimate in that I’m going there, they are going to know whether I’m a candidate for a positive outcome, and then I’m going to do the procedure.
Bill Gasiamis 1:08:58
Whereas with Dr. Tobinick, he doesn’t have those facilities. They’re not neurologists, they are general practitioners who give an injection like the general practitioner would to a rheumatoid arthritis patient, and then they hope for the best, and they hope that you were a candidate, and that you get a result. So one other thing that people can consider, seriously consider, is hyperbaric oxygen therapy under a very controlled environment, not the kind of therapy where you can go down to the local place that’s got a hyperbaric oxygen therapy tank in their clinic, right? And then you just go there, and you sit there for an hour, and you pay your 80 or 100 bucks, and then you leave.
Bill Gasiamis 1:09:44
Not one of those where it’s not monitored by doctors. This one in particular, they seem to target the same things that etanercepts target at tennis targets, although Dr. Tobinick maybe doesn’t include that you. The way that he describes the the patients who are eligible, because he doesn’t have that data. So this is how I’ve kind of understood what Dr. Tobinick is targeting, but hasn’t got the data to confirm whether you’re a whether you’re a, not a true candidate, but somebody who’s going to likely to get good results.
Preparation for Etanercept Treatment
Bill Gasiamis 1:10:28
So basically, what I’m trying to get at is the more information about your brain that you’ve got about the possibility of having those penumbras that are revivable, the more information you have, the better the decision that you’re going to be able to make about going to Dr. Tobinick and getting Etanercept done. What I love about Dr. Tobinick is that he’s doing the things that we are. Some people are begging the medical community to do for stroke survivors that they, for some reason, almost refuse not to do like it’s so silly that there is this massive amount of data that Dr. Tobinick has been able to gain over at least nine years that I know of that has been doing these procedures.
Bill Gasiamis 1:11:25
He’s got YouTube videos of hundreds of people who have had positive outcomes, and for some reason, somebody else on the planet hasn’t decided to hook up with this guy and go, How can we help stroke survivors get better outcomes, like, it’s so ridiculous I cannot understand that for the life of me.
Steve Lawrence 1:11:46
No. And it was the 60 minutes crew that got involved that made me kind of think, Okay, this might get some traction and might give some legitimate See to it.
Bill Gasiamis 1:12:01
Usually 60 minute cruise are trying to find, you know, the snake oil cells. When they’re trying to show you that these guys are scammers. Don’t go and spend your money there. These guys are doing the exact opposite in this particular case, you know, and the person who’s on the video has a perfect, you know, result as a as a result of the injection, within minutes on TV, and nobody else has gone, oh my god. Like, why don’t we work with this guy and help him get more results, more outcomes? Dumb.
Steve Lawrence 1:12:38
Yeah, that’s a conversation that I’d love to get answers for but it’s, it’s crazy, it you hear the that it’s the FDA, it’s big pharma, it’s all this stuff.
Bill Gasiamis 1:12:51
Look, it’s probably big pharma in that if it was patented and they had and they owned the rights to it, they would fund it no end because then they’d be able to sell it all around the world for stroke. But the fact that they’re not, I don’t know. I’m just glad we’re talking about it again, because this continues the conversation.
Bill Gasiamis 1:13:13
This gets more people curious, and maybe somewhere we can start, you know, chipping away at the things we need to chip away at to get the result and to get the procedure made available for more people and at a cheaper price, right? That’s really the most important thing, and hopefully even get it covered by medical insurance or something.
Steve Lawrence 1:13:35
Yeah, that’s the thing, if, if more people are aware of it, and it gets into the right ears, and people go, ding, these people are having strokes every day.
Bill Gasiamis 1:13:46
And, yeah, they’re not going to start.
Donna Lawrence 1:13:49
No, they’re not, since they found all the information about Dr. Tobinick, day in and day out, he’s watching a reading day in and day he passes it to me, or we watch it together. And yeah, at first I was like, Yeah, I don’t know about this. Yeah, I just don’t know about this. But sounds too good to be true, probably. And just like everybody on the internet, then I’m the type person started reading myself.
Donna Lawrence 1:14:18
But after we spoke to all these people that had good outcomes, and God bless the ones that has not but the ones that had good outcomes, it gave me more encouragement that this is really what we need to do, you know. And after we spoke to Dr. Tobinick with the first consultation over the phone. I was sold. I was sold. He wasn’t hiding any.
Steve Lawrence 1:14:48
He was he was very blunt about your chances. He said, I’ve dealt with what you’ve experienced and what you’re experiencing. He said, I’m not going to cure it, it may reduce it maybe. An 80% chance it works, a 20% chance it doesn’t.
Lifestyle Changes and Support 2 Years Post-Stroke

Donna Lawrence 1:15:03
Yeah, and there was quite a few times in the hour conversation, he says, We hope it works. We hope it gets you some satisfaction and some pain relief, but there’s no guarantees. You know, he kept saying there’s no guarantees. So he’s not hiding anything.
Donna Lawrence 1:15:25
He’s very he wants to get he wants, I think, if somebody came in and said, look, let’s work in partnership and get this done.
Donna Lawrence 1:15:31
he wants to help this meeting.
Steve Lawrence 1:15:33
He’ll, he’ll hand over. He’s showing the videos every, every week.
Bill Gasiamis 1:15:37
That’s the part that is interesting, is that there’s plenty of data, plenty of information. What would be good to hear from is people who didn’t get the result, and to get like somebody like that on a podcast interview and find out from them, you know, how it was for them not to get the result? I imagine some people are very disappointed when they go there. I’m sure pay the money and then get the result.
Donna Lawrence 1:16:07
It’s like I told Steve, we’re going to have to get the mindset that we’re going to go we’re going to hope and pray for the best, that that’s our thing. We’re going to hope and pray for any improvement. And if not, then at least he gave it his best shot.
Steve Lawrence 1:16:24
Yeah, I wouldn’t know unless I take the shot.
Bill Gasiamis 1:16:29
You gotta do it.
Steve Lawrence 1:16:30
I wonder if it’ll work. Well, that’s not going to fix it. I won’t know unless I take it. If it doesn’t work, it doesn’t work, I go on to the next hope.
Bill Gasiamis 1:16:43
Yeah, hyperbaric oxygen therapy man, no worries. Definitely there’s, yeah, it’s really good. Do you know why? Because it’s not invasive at all, and it and hyperbaric oxygen therapy, when it’s not done even clinically, has positive outcomes for people in their brain, because the brain gets more oxygen. So your brain, brain lights up. Your knees hurt less. Your back hurts less, like it fixes all these other things that are peripherally, kind of causing dramas. And then it said it it may also support that other part of the brain, and it’s non invasive, but I imagine it’s expensive.
Bill Gasiamis 1:17:17
I can’t imagine it’s cheap, especially, especially Doctor Amir’s process, because they are very rigorous in the way that a they treat you beforehand, and then also in the way that they administer the therapy and right you. But the thing about it is, you know if it’s going to work for you beforehand. Of the in the video, you see scans. He shows scans of a brain that looks like it’s going to be able to be rehabilitated. And then he shows the after, after the therapy and how it works like so it’s not all. Hope is not lost. If a tennercept doesn’t work, is basically what I’m trying to get out there.
Bill Gasiamis 1:17:58
You know, there’s more to it, and it’s just keep going after it. That’s That’s all I want to encourage people to do. And even if hyperbaric oxygen therapy is out of your budget, like even that, if you become a deep meditator and you learn how to breathe and do exercises with breathing, you know, Wim, Hof breathing and that kind of stuff, you can improve the circulation and the blood flow and the healing in your body.
Bill Gasiamis 1:18:25
So even that is not out of the question, and you can do that for free. You don’t have to go anywhere. Just jump on YouTube, click Wim, Hof, breathing, breathing method, and get somebody to take you through that exercise for free on YouTube, and you’ll get outcomes. You really will. So I just want to encourage everybody to just go after all the recovery they possibly can, you know.
Speaker 1 1:18:52
There’s no dead ends. It’s, there’s always something to try. Yeah.
Bill Gasiamis 1:18:57
Don’t die wondering. And be wary. And you need a donor in your life to be wary and go hang on a sec. What’s that junk? You know? What are you talking about? Let’s look at that deeper. You know, we can’t just jump into everything without looking at it.
Speaker 1 1:19:15
Well, we changed our lifestyle a bit. We used to be very outgoing and active outside, very physically active. We want to get back into that. That’s important. Our diets have changed. We’ve watched a lot of what we’re putting into us now, the stress is huge. I’ve let that go. I’m not going back to work if, if everything works out I was this close to the retirement, I’m not going to, you know, I’m going to not let that take me down beacuse I know.
Bill Gasiamis 1:19:49
You haven’t worked.
Speaker 1 1:19:51
No, no, it’s too physical of a job. I’ve been written off by the doctors saying, you know, the pain and they would. Expect me to go 100 miles an hour again. Yeah, back again.
Donna Lawrence 1:20:03
Mentally, mentally with deadlines, like five minute deadlines before it goes to air.
Steve Lawrence 1:20:08
Yeah, there was a lot of that. But physically, it wasn’t that bad, but it was all in that in the head that you get this done every day. So I’ve eliminated that limited, yeah, watch the diet. Watch, you know, just start putting stress. That’s the beginning. One thing I did find out, though I have in my head, is something called small vessel disease. Have you ever heard of that?
Steve Lawrence 1:20:30
No, tell me about it.
Steve Lawrence 1:20:32
It’s well, I don’t know much other than that’s what happened to one of the vessels in my brain when they did the MRI, it was a small vessel that burst and the blood bleed leaked into the areas that caused the deficits that I have, and with a blood pressure of 212 that would do it.
Donna Lawrence 1:20:55
And the other in the hospital, we found out that he has a slight aneurysm in his.
Steve Lawrence 1:21:05
Lower descending aorta.
Donna Lawrence 1:21:10
40 millimeters, and which our cardiologist said that if it got to 60, that that would be a little love. We will need to do something, but they’re monitoring it. They weren’t doing it every six months now, he said, we’re going to stretch you. Since we didn’t see any growth in it, we’ll stretch you to a year before we you know.
Speaker 1 1:21:31
So the good thing of having a stroke is now I’m taking care of myself better. I didn’t know this thing about my heart. Now I can get that checked. Other things that are going on in my head, managing that.
Donna Lawrence 1:21:47
But it’s everybody that our story has touched, that that’s now either on high blood pressure medicine or they have a machine.
Speaker 1 1:22:00
Everybody in my family went out bought a blood pressure machine, because the only other time you can get your blood pressure is at the doctor and the pharmacy. Everybody, all my friends, are interested for knowing, like, what happened, and we’re all on the same page, doing the same thing. Why did it happen to you and not me. So they’re watching their lifestyles and how they do things differently. That’s good, man. One other thing I’ve started to do is give back. So I found some people that and this happened to me when I was in rehab.
Steve Lawrence 1:22:34
Part of the OT was people who have had strokes and have recovered and wanted to come back and talk about like, this is me five years out when I was like, you you know you’re thinking, you’re in the hospital. Oh god, you know, I’m not going to ever be able to do this or that. Well, these guys gave you hope, and maybe it would work. Maybe it didn’t. Depends on how you interpret it.
Steve Lawrence 1:23:03
One of those gentlemen and his wife were here two days after I got home from the hospital to talk to Donna about what she can expect to help you know me get around during my stay in the hospital, we actually moved that was planned, and we’re in a place now where everything there’s no stairs or obstacles. So that was just another blessing that happened. But I’m giving back to people who want to talk about it like it’s, it’s hard on the head, like emotionally, oh my god, my life, especially younger people.
Steve Lawrence 1:23:44
One of the guys I’ve reached out to, I talked to once a month or so, and he he’s having a rough go with, you know, his physicalness, he used to be outside doing everything and but he realizes it’s, it’s a day by day thing, and it’s going to take time, and if you got a good, positive brain set and good people around you, hopefully you can put this all behind you someday, and you’re not going to be perfect and you’re hard to accept that.
Bill Gasiamis 1:24:17
You mentioned two chapters of my book, chapter one, mindset, and I think chapter eight is community building the right community around you. And it’s so important your mindset needs to be able to focus the majority of the time on the positives and where you’re heading and where you want to be and where you want to go. And it’s allowed also to, every once in a while get negative and think about the terrible things and all that kind of stuff, you know, because it’s part of the cycle, and it’s part of the ups and downs.
Bill Gasiamis 1:24:50
But if you spend some time there, but then spend the majority of your time focusing on your goal and not not the timeline to get to your goal. Just the goal where it is, then you’re likely to move closer toward it. And also, if you surround yourself with encouraging people and people who are going to support your desire to overcome things and be better, then you’re more likely to get there as well. Because if you got those, those negative nancies around you, oh my gosh, that’s even harder.
Donna Lawrence 1:25:26
I know, and the internet’s horrible.
Steve Lawrence 1:25:30
Parts of it is there. There are, there are good resources out there.
Bill Gasiamis 1:25:34
But Instagram, recovery after stroke on Instagram, I mean, you come to my podcast. There’s no negative answers there. They’re not allowed. But also, isn’t that amazing? I’m followed by about five and a half 1000 people, I think something like that. And I put a post up, and all you get is amazing responses about where they’re at, where they’re going, how they’re coming along. Sure, you also get the people going. I never got a good result out of that, or never. But nobody comes on there and gives anybody a hard time or calls us, you know, crazy, or anything like that.
Bill Gasiamis 1:26:10
It’s all positive. It’s all about trying to put the information out there and get people over the line in something that’s a difficult time, and all the questions that I ask are questions that I was curious about, or somebody has contacted me and said, Can you ask the community this? Because I want to see what happens. And we’ve answered questions like, do you hear voices in your ear after after the stroke, you know? And I thought, There’s no way that’s related to the stroke. And of course, on the stroke side.
Bill Gasiamis 1:26:40
Some people hear voices in their ear that aren’t really there, and at the beginning, it was driving them crazy, and now they’re just getting to understand it and used to it, and they kind of ignore it like that’s what that’s what I was looking for. I’m glad that that community kind of thing exists, and that the podcast exists, and people like you reach out to share. And what’s really cool is that you’re doing what a lot of other stroke survivors do instinctively, is immediately think about helping other people.
Bill Gasiamis 1:27:14
That’s just brilliant to me, like that’s so great that we do that. I i Even catch myself out doing it, and every once in a while ago, you never would have done that stuff before. Like, what are you doing? Who are you? Who is this person? You know, it’s really awesome.
Donna Lawrence 1:27:32
I think it everything that happens to you, happens for reasons, but I think it changes the perspective that you have in life. But I know even like, you’ve probably got people that don’t have caregivers or that do have caregivers and and that’s another aspect that it’s it’s hard. There are days that, mentally, it’s hard at first for god, the first year was just like, whoa, you know, how am I going to you?
Steve Lawrence 1:28:10
Do need that community? Yeah, without her, like, I wouldn’t have been able to talk to you today, or think about would have jumped out the window or cut my leg off.
Bill Gasiamis 1:28:21
Yeah, don’t go there yet. No, follow all those other paths. Look, guys, it’s been a real pleasure to chat to you both. Thank you so much for being on the podcast. I really wish you well with your upcoming procedure. Please let me know how it goes. I just fingers crossed that it goes well for you. And yeah, thanks for reaching out. I really appreciate you sharing your story.
Steve Lawrence 1:28:46
Thanks. Yeah, we will. Thanks for having your podcast and and helping people with this is great. Lot of people are going to get better with the community.
Donna Lawrence 1:28:56
Yeah, and information.
Steve Lawrence 1:28:59
Thanks, buddy.
Bill Gasiamis 1:29:00
Well, that’s it for another episode. I hope you found Steve and Donner’s story of stroke recovery after two years as insightful and as inspiring as I did, their perseverance through challenges like sensory overload and rehab shows the importance of support and resilience. A huge thank you to everyone who has left a review. It helps others find the podcast, and it provides vital support for stroke survivors in need. If you haven’t yet, please consider leaving a five star review and sharing what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:29:36
The more people interact with iTunes and Spotify, the more Spotify and iTunes will make the podcast viewable and put it in front of people who need it. For those watching on YouTube, remember to leave a comment. I love receiving your comments, and I will respond to all of them, like the episode and subscribe to the. Channel to get notification of future episodes. If you’d like to support the podcast further, you can do so by subscribing to our Patreon page at patreon.com/recoveryafterstroke, your support keeps this podcast going and helps us continue sharing these powerful stories.
Bill Gasiamis 1:30:20
If you’re a stroke survivor with a story to share, come and join me on the show. It’s a great time to join me. The interviews are not scripted. You do not have to plan for them. Just come as you are and share your experience. If you have a commercial product or a service that supports stroke recovery, consider being a part of a sponsored episode. Visit recoveryafterstroke.com/contact, fill out the form and we’ll connect via zoom. Thanks so much for tuning in. Your support means the world to me, and I look forward to seeing you in the next episode.
Intro 1:30:55
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 information or purposes only, and is largely based on the personal experience of Bill Gasiamis.
Intro 1:31:25
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 1:31:49
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:32:14
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 2 Years Post-Stroke: Steve Lawrence’s Inspiring Story of Recovery, High Blood Pressure, and Sensory Overload appeared first on Recovery After Stroke.
1 hr 34 min
August 26, 2024How Rachel Paverman Overcame a Cavernoma and Hemorrhagic Stroke: A Story of Resilience and Hope
Overcoming a Cavernoma and Hemorrhagic Stroke: Rachel Paverman’s Inspiring Journey
When it comes to medical conditions that are both rare and life-altering, few people are familiar with the term “cavernoma.” Even fewer have experienced the terrifying ordeal of a hemorrhagic stroke caused by this condition. Rachel Paverman is one such individual. Her journey from diagnosis to recovery offers a powerful story of resilience, determination, and hope that is both inspiring and informative for anyone navigating similar challenges.
What is a Cavernoma?
A cavernoma, also known as a cavernous malformation, is a cluster of abnormal blood vessels, typically found in the brain or spinal cord. These vessels can be prone to leaking blood, leading to various neurological symptoms, including seizures, headaches, and in severe cases, hemorrhagic strokes. Unlike more common stroke causes, cavernomas are often congenital, meaning that individuals can live with them for years before any symptoms appear.
Rachel’s Diagnosis: From Cavernoma to Hemorrhagic Stroke
Rachel Paverman’s story began in June 2019 when she started experiencing troubling symptoms, including difficulty swallowing and neurological issues. After an initial misdiagnosis of an aneurysm, further tests revealed that Rachel had a brainstem cavernoma—a condition that would soon lead to a series of life-threatening events.
In September 2019, Rachel underwent her first surgery to address the cavernoma. However, her battle was far from over. Just a few months later, in December 2019, she experienced a hemorrhagic stroke due to a second bleed from the cavernoma. This event necessitated a second surgery, which unfortunately did not fully resolve the issue. Rachel’s condition worsened, leading to a third surgery later that same month.
The third surgery, which took place at the end of December 2019, involved a different approach and successfully removed the cavernoma. However, the damage caused by the hemorrhagic stroke left Rachel with significant challenges, including paralysis on her right side and hearing loss in her left ear.
The Road to Recovery After a Hemorrhagic Stroke
Recovering from a hemorrhagic stroke is a long and arduous process, and Rachel’s journey was no exception. After spending over two months in rehabilitation, she faced the reality of living with the lasting effects of the stroke. Her right-side paralysis required ongoing physical therapy, and her hearing loss made social interactions more challenging.
Despite these obstacles, Rachel has embraced her new reality with resilience and positivity. She continues to work on her recovery, participating in physical and occupational therapy multiple times a week. Her story is a testament to the importance of perseverance and the power of maintaining a positive mindset, even in the face of seemingly insurmountable challenges.
Sharing Her Story: From “To the Abyss” to Advocacy
Rachel’s experience with a cavernoma and hemorrhagic stroke inspired her to share her journey with the world. In her memoir, “To the Abyss,” she chronicles her experiences, offering readers an intimate look at the physical, emotional, and psychological challenges she faced. Her book has become a source of inspiration for others dealing with similar conditions, providing hope and encouragement for those navigating their own recovery journeys.
In addition to her writing, Rachel volunteers with the Alliance to Cure Cavernous Malformation, an organization dedicated to supporting those affected by cavernomas. Through her advocacy work, Rachel continues to raise awareness about cavernomas and hemorrhagic strokes, helping others find the resources and support they need.
Lessons from Rachel’s Journey
Rachel Paverman’s story offers valuable insights for anyone dealing with a cavernoma, hemorrhagic stroke, or other serious medical conditions. Some key takeaways from her journey include:
Early Detection is Crucial: Cavernomas can be present from birth but remain undetected until symptoms arise. Regular medical check-ups and paying attention to unusual symptoms can lead to earlier diagnosis and treatment.
Patience and Positivity in Recovery: Recovery from a hemorrhagic stroke, especially when caused by a condition like a cavernoma, is a slow and challenging process. Rachel emphasizes the importance of being patient with oneself and maintaining a positive outlook, even when progress seems slow.
Support Systems Matter: Rachel’s recovery was supported by her family, healthcare professionals, and the broader community. Having a strong support system can make a significant difference in the recovery process.
Advocacy and Awareness: Sharing her story through her memoir and volunteer work has allowed Rachel to help others and raise awareness about cavernomas and hemorrhagic strokes. Advocacy can be a powerful tool for healing and for supporting others who are going through similar experiences.
Conclusion: A Journey of Resilience and Hope
Rachel Paverman’s journey from diagnosis to recovery after a cavernoma and hemorrhagic stroke is a story of resilience, hope, and the power of the human spirit. Her experience serves as a reminder that even in the face of severe medical challenges, it is possible to find strength and make a meaningful recovery. For those affected by cavernomas or hemorrhagic strokes, Rachel’s story offers a beacon of hope and a roadmap for navigating the difficult road to recovery.
As Rachel continues her journey, she remains committed to helping others by sharing her story and advocating for awareness and support. Her message is clear: no matter how challenging the circumstances, with determination, patience, and support, it is possible to overcome the obstacles that life presents.
Rachel Paverman’s Recovery from Stroke, Cavernoma & Hemorrhagic Stroke
Discover Rachel Paverman’s inspiring journey from cavernoma to hemorrhagic stroke recovery. A story of resilience, hope, and determination.
To The Abyss Facebook Page
Instagram
Support The Recovery After Stroke Patreon Page
Highlights:
00:00 Introduction
01:03 Cavernoma And Early Symptoms Of A Stroke
07:01 Life After Surgery and Early Recovery From Cavernoma
13:03 Current Life and Adaptations
25:30 Writing A Book
32:39 Emotional And Mental Recovery
43:28 Dealing With Tarsorrhaphy
50:13 Hearing Issues After The Surgery
1:03:52 Lessons From The Stroke
Transcript:
Introduction Cavernoma – Rachel Paverman

Bill Gasiamis 0:00
Hello everybody, and welcome to episode 318 of the recovery after stroke podcast. In this episode, I’m honored to share the extraordinary journey of Rachel Paverman, who faced a cavernoma and multiple brain hemorrhages turned her life upside down.
Bill Gasiamis 0:18
At just 25 years old, Rachel underwent three brain surgeries, each more challenging than the last, leaving her with significant physical and neurological deficits. But Rachel’s story is not just about survival, it’s about resilience, finding purpose and redefining life after a traumatic brain event.
Bill Gasiamis 0:39
Join us as we explore Rachel’s path to recovery, the lessons she learned and the hope she offers to others facing similar battles. This is an episode that will leave you inspired and uplifted.
Bill Gasiamis 0:52
Rachel paverman, Welcome to the podcast.
Rachel Paverman 0:55
Thank you so much for having me. I’m so happy to be here.
Bill Gasiamis 1:00
Thank you for being here. Tell me a little bit about what happened to you.
Cavernoma And Early Symptoms Of A Stroke

Rachel Paverman 1:03
Yeah so back in 2019 when I was 25 years old, I was traveling for work a healthy 25 year old just started having her career. At this time, I live with my boyfriend, I was working a full-time advanced position where I traveled internationally as well as domestically, and I was doing really well at the start of my young career.
Rachel Paverman 1:31
I also worked in sports too, so I had a really great time doing that, and then one morning I woke up and I was having trouble swallowing, and I was having other weird neurological symptoms. I couldn’t hold my pen as tight or do my makeup in the morning, and I would get dizzy at random times, and I couldn’t really put my finger on like, what exactly was happening.
Rachel Paverman 2:00
So I think it took about two months. So this started in June, and in September of 2019, I had a MRI, which showed they thought at the time that it was an aneurysm, but what it actually was something called a cavernous malformation, and i t was on my brain stem, and it was about three centimeters.
Rachel Paverman 2:30
So I did have my first operation an open brain surgery on September 26 of 2019 to remove it. From there, I went to rehab, and I was doing better, and then in December of 2019, early December, I had another bleed. So the cavernoma was still in fact in my brain, and they had not realized that.
Rachel Paverman 3:00
So I did have a second lead at that time, which then led me to have a second surgery on December 10 to remove it. My neurosurgeon was out of the country at that time, so one of his colleagues performed the surgery, and then in the next couple of weeks, when I was in rehab, I had further decline, to the point where I wasn’t able to talk or sit up on my own or walk or hear or see anything.
Rachel Paverman 3:34
So I was in the process of having a feeding tube put in, and they called for an emergency surgery for me, I was just declining so quickly, and at that time, they went through a different site, so they went through the back of my brain, and from that they realized that the cavernoma was still there, and It had exploded in my brain stem, so I had hydrocephalus and all these other things going on, and I was left with a multitude of deficits.
Rachel Paverman 4:10
But on December 30, that was my third surgery, and I spent about two months in rehab, but I had my third surgery at that point, and at that point it was fully removed. So I’m not left with a cavernoma any longer, but I’m left with a a bunch of deficits.
Bill Gasiamis 4:35
The obvious question is, how did they miss it two times? What Is that even a thing like, what, what went on there? Do you, I don’t even know how to say it, like I have. They’ve been able to explain that?
Rachel Paverman 4:50
Yeah. So the thing is, like with cavernomas, we I was afraid at the time to do research, which is kind of stupid on my part. I was really distrusting my surgeon, who was the chief of Neurosurgery at the hospital that I was at, so I knew that he was a great surgeon, but what I didn’t realize was that he wasn’t a CCM cavernoma specialist who was just a great neurosurgeon.
Rachel Paverman 5:20
So I think, like, what really had happened was the brain stem is such a delicate area that he had explained to me that you can’t just move things around and try to find what you’re looking for, because it’s so sensitive. So they took out what they thought was all of it, and they just kept missing the whole thing.
Bill Gasiamis 5:43
Right, okay, so they kept missing the whole thing, and then they were reporting that they had done the job.
Rachel Paverman 5:56
I’m sorry?
Bill Gasiamis 5:57
Were they reporting that they had done the job? it was successful.
Rachel Paverman 6:01
We believed that they had got the whole thing. But I think what happened was, after my second surgery, my surgeon was out of the country, so I think that they were trying to stabilize me and hope that they would have gotten it all, but the guy that was really supposed to be devoted, it wasn’t around. So I think if he was around, and might have avoided a third surgery, but he was actually out of the country speaking at a conference about my case, ironically. So he wasn’t there, and I think I could have avoided a third surgery, if it was but I’m not really sure.
Bill Gasiamis 6:46
Yeah. So now you’re dealing with what the outcome of the third surgery was. So did you have deficits when you woke up from the second surgery, or did they come on as the cavernoma started to play up.
Life After Surgery and Early Recovery From Cavernoma

Rachel Paverman 7:01
Yeah, so I did have some deficits, but nothing to the extent of what I currently have. So what led me to have my second surgery, I had a bleed, and the bleed happened overnight, and what happened where I woke up was I was completely paralyzed on my right side, so I wasn’t able to move my arm and my leg. To this day, I’m still not able to have feeling like on that side or anything.
Rachel Paverman 7:36
So that was kind of the alarm that went off and made everyone realized, I think you need another surgery. And, yeah, I mean, it was definitely I was having some issues swallowing as well. But I think the main thing was the fact that I had lost, like all abilitlies, to move half of my body.
Bill Gasiamis 8:02
How long did you spend in hospital after that third surgery? Rachel.
Rachel Paverman 8:06
So after the third surgery, I would say I spent about eight to 10 days in the ICU, and then I was moved to a step down unit, and then from there, I was transferred to an inpatient rehab facility, and I spent about a month and a half there. So I was in the hospital until the end of February.
Bill Gasiamis 8:34
And then when you went home, what challenges did you experience physically?
Rachel Paverman 8:40
Yeah, so I was released from the hospital on February 22nd and the covid pandemic started on March 16th or 17th. So I had just started in rehab, and I was so early on in my recovery that I really didn’t know what to do on my own, and shortly after I started at therapy, my therapy had shut down because of the pandemic, so I was really left on my own with my mom and my stepdad, and we’re kind of just figuring it out on our own.
Rachel Paverman 9:20
At this time. I lived with my boyfriend at the time, but I moved out and moved in with my mom because he was still working, and I was really afraid, so fresh out of surgery, to be exposed to covid at the time, it was so such a scary thing, so.
Bill Gasiamis 9:46
Yeah, you’ve just had all these interventions, and then you’ve come home and you need to repair and recover and heal and you’re hearing about covid and we don’t know anything about it, and it’s pretty dramatic.
Rachel Paverman 9:59
Yeah, yeah. You know, it’s funny. I actually thought, like, it was so crazy to me that I had brain surgery, and then it was so crazy to me that covid shut the whole world down that I got out of the hospital and I’m like, Is this real life? Like, am I dreaming? Like, this is so crazy, like everything was just so bizarre to me, like I couldn’t wrap my head around it.
Intro 10:28
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before. You probably don’t know what questions to ask. If this is you? you may be missing out on doing things that could help speed up your recovery.
Intro 10:58
If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com, where you can download a guide that will help you. It’s called “Seven questions to ask your doctor about your stroke”. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Bill Gasiamis 11:28
Your 25 year old self has kind of crossed that threshold where you realized you were unwell and you’re going through all this stuff to try and heal your brain and trying to get that particular blood vessel, the cavernous malformation, out of there. Before that event, what was life like? How did you go about day to day life, and were there anything? Any signs or symptoms that you look back on now and think or maybe that was giving me some information about something I didn’t know was in my head.
Rachel Paverman 12:15
Yeah, definitely. So I all my life, I was always told my doctors that I was in the gray area. I was told I have Crohn’s disease, I didn’t have it. I was told I had Fibromyalgia, I was told I had like Hypothyroidism, and I all my life I was just always in the gray area, and I never could figure out what was the root cause of me not feeling well. So for me, a lot of the symptoms that I had were gastrointestinal. I had so many issues with my stomach, and I don’t know if it’s because I was anxious, because my brain wasn’t right and something was off in my brain.
Current Life And Adaptations After Cavernoma

Rachel Paverman 13:03
But I also remember, like over the years. So for as long as I can remember, I would always have like, these random disease spells, and I’ve had them forever. So for me, I didn’t know that it wasn’t normal to in fact, until the cavernoma was taken out, and I realized, like, okay, that’s not really something that should have been happening, but I didn’t really know any different.
Rachel Paverman 13:32
And then my surgeon also told me that it’s something that I was born with, and then it was likely just growing over the years, and then when I did finally get to figure out what it was and that I had this in my brain, I had already experienced like two, I think it was two bleeds at that time. So my surgeon said that he can tell by the color of blood to see how many bleeds that I have experienced. And by this time it was removed, I think they said that I have total of like five fleets.
Rachel Paverman 14:14
So yeah, so I definitely had some prior to discovering it, which I think that might have an idea as to when those happened. And I think that one of them was when I woke up and had issues swallowing, but I’m not quite sure when the other one was.
Bill Gasiamis 14:34
Right, okay, that’s interesting, right? So waking up and not being able to swallow. What did you think that you just forgot to swallow, or you didn’t know how, or there was something wrong with your throat?
Rachel Paverman 14:49
Yeah, it was. It’s the craziest. I can’t even explain like, it’s like, it’s not that I couldn’t swallow. I knew how to swallow. I just like my brain wasn’t communicating with my body to tell me to swallow. So I know, I knew I had water right now, I knew how to swallow it, but when I went to swallow it, my brain just like they felt like it was just a block on my brain that wouldn’t let me do it. It was, it was really scary, and I was brushed off by a lot of people who thought, Oh you’re fine, It’s just your anxiety, like you should go see a therapist.
Rachel Paverman 15:33
So I started doing therapy. I went to my primary care physician, and she told me that she would do scans on my throat to see if maybe I had something going on in my throat or something. So nobody was looking at my brain as a cause. They were looking at everything else.
Bill Gasiamis 15:58
Yeah, which kind of makes sense that they wouldn’t think of the brain, because it could be another a number of other issues. You know that your your age is an issue. They look at you and they say, well, she’s very young. Uh, she’s probably doing something crazy, or, who knows what? How long did it last for the not being able to swallow, though, and also, did that mean that you didn’t eat food as well?
Rachel Paverman 16:29
So it started in June, and then I didn’t get my diagnosis until September, so it wasn’t too, too long, but I didn’t ever have an issue where I wasn’t able to eat, but I would cough a lot when I was trying to, like, sip on water, it would just, like, slip down my throat before I could swallow it, and then with food, I just had to eat very slow, because I it took a while for my brain to connect to understand that I needed to swallow it.
Bill Gasiamis 17:07
Yeah. So what’s life like now? What? How do you go about life? How to how have you adjusted to your body? What are the things that you do to occupy time with.
Rachel Paverman 17:24
Of course. So I’m almost five years out. In September, it will be five years. So I’m currently still doing physical therapy three days a week, occupational therapy two days a week, and I published a memoir. So a couple years out, I have, I wrote down all the memories that I have of my surgery during covid, and then I spent a lot of time editing it and just going through that and creating journal entries to add on, and I published a memoir in 2022 some of the things that I love enjoying now.
Rachel Paverman 18:09
Which are a little bit different from what I was able to do in the past, but I always love working out, so I have a bike at home, So I do that, and I do adaptive CrossFit. I love listening to audiobooks and podcasts. I love going to parks and cooking. And then something else that I’ve been doing is the organization that works closely with cavernous malformation is called Alliance to care Cavernous Malformation. So I’ve been volunteering with them, and it’s changed my life, to say the least.
Rachel Paverman 18:47
It’s it’s been absolutely amazing to me. It’s an organization that’s for that is for those that are affected by cavernous malformation, and they just bring research community support and multiple resources for the community and everyone affected by CCM. So it’s a cause that’s very close to my heart, and although I don’t have a capitalist malformation in my brain anymore, I think that it’s so important to just create a future that could be CCM free for the future generations that are dealing with the genetic type, or if they have a type like I have, that’s sporadic, that wasn’t able to be operated on.
Rachel Paverman 19:37
So my mission in myself, I should just make sure that the there’s hope for the future, and make people see that meeting positive can really affect like the way they recover and the way that they see things, and also the alliance structure is the. They introduced me to the company that I now work for. So I work for a company called Avid Therapeutics, and they are a bio pharmaceutical company, and what they’re doing is looking to find a cure for CCM. And they took me on early in the year, and I’ve been working with them doing a lot of like social media, internal events as well as branding.
Rachel Paverman 20:28
And I’m just so happy to be a part of the team and kind of just work closely with them to help them meet their goals, and my goals are aligning with their goals, so it’s really just a great master. I’m so happy to be working there and kind of back in the workforce again.
Bill Gasiamis 20:47
Just a quick break, and we’ll be right back with Sonny’s incredible journey. But first, I wanted to take a moment to talk about something that’s been a big part of my own recovery journey, and that is my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. In it, I share my personal story and that of nine other stroke survivors who have turned their challenges into opportunities for growth. If you’re looking for inspiration and guidance on your path to recovery, this book is for you to get your copy, just visit Amazon or visit recoveryafterstroke.com/book.
Bill Gasiamis 21:22
What was it about volunteering that was important before you knew all the benefits of it, you decided that you’ll volunteer. Why did you make that decision?
Rachel Paverman 21:35
So, I made that decision because I hadn’t. I’ve been I was always so interested in my job and what I did my career, and I spent a few years trying to figure out what my purpose was, and I was really focused on recovering, and I’m at the point now where I wanted to get back into the workforce slowly. So they really helped me integrate back into the workforce and use my brain in different ways than I was used to working. So it was a really great stepping stone for me, and I’m so grateful that I had the opportunity, and do still have the opportunity to do that.
Bill Gasiamis 22:21
Yeah. So I volunteered as well. About a year after I became unwell, I still had the arteriovenous malformation in my head for a few more years after that, at the Stroke Foundation, and it was really good to volunteer to do something for somebody else, and then I met other people there that were like me, and that’s kind of the first time I started to get involved with a community around stroke. And everyone was injured in their own unique way from stroke, and it didn’t, and it kind of, I met people that I felt like knew what it was like to be me and vice versa.
Rachel Paverman 23:14
Yeah, it’s so important in the community.
Bill Gasiamis 23:17
And it was something,. It’s the it’s a really cool place to find community. And immediately people know, understand you. Immediately people know what you’re going through, what’s happened. And it’s a very interesting, unique experience to co to go from nobody knows what I’m going through. I don’t know how to explain it to people. Nobody gets me. Everyone misunderstands me to immediately being understood and immediately people empathizing with your situation.
Rachel Paverman 23:47
So I totally understand that. Yeah, I totally agree with you. I think that the community is such a important part of recovery and just having people that relate to you. It’s just like an indescribable bond that you can’t really experience withpeople that you’ve known your whole life, that that might not know like what you’re going through. So I totally agree with that
Bill Gasiamis 24:18
You seem like you’ve taken all of this stuff in your stride, just by the short conversation that we’ve had so far. But was it really hard to wake up and discover that a lot of your body has been impacted negatively?
Rachel Paverman 24:33
It was definitely a tough pill to swallow at first, and I think that there are days that I still do struggle with that I think that it’s only normal to have, like, good days and bad days. I just try to stay as positive as I can be, because I feel like that’s the only thing I can do, like, there’s only so much that you have control over. Here, and I think that if that’s something that I can control, I want to control that.
Rachel Paverman 25:06
And yes, it’s tough that, you know, I was 25 and active and traveling and hiking and snowboarding and stuff, and I can’t do that now, but I’m just very grateful to be alive, because it could have ended a very different way, and I just have to remember to be grateful for that every day.
Writing A Book: To The Abyss

Bill Gasiamis 25:30
Let’s talk about your memoir a little, do you have a copy there by any chance?
Rachel Paverman 25:35
I do, yes.
Bill Gasiamis 25:37
Just hold it up to the camera.
Rachel Paverman 25:40
This is my memoir. It’s called To The Abyss.
Bill Gasiamis 25:45
Yep, and give me an idea of what the chapters are about. What’s in there?
Rachel Paverman 25:52
Yeah. So it’s really a book that’s it’s very heavy content, but I try to make it as light as that can be.
Bill Gasiamis 26:01
That’s quite the task is that your first book?
Rachel Paverman 26:06
It is, yeah. I’ve never written.
Bill Gasiamis 26:11
So, not only are you not a writer and it’s your first book, you also have to write about some of the heaviest content that you could possibly write about, and your thoughts are on the reader, it’s to kind of try and make it easy for them to read yeah.
Rachel Paverman 26:27
Yeah. I mean, I’ve gotten a lot of feedback that says that I did a good job at trying to make it easy for people to read. A lot of people have told me, like, it’s a book they just couldn’t put down because they just want to know, like, what happened next.
Rachel Paverman 26:43
So it’s basically just a recollection of what I remembered from life prior to my cavernoma, life during, the discovery of my cavernoma and my surgeries, because I do even when I was at the point where I wasn’t able to talk, I still have very vivid memories of what went on that part of my brain wasn’t affected.
Rachel Paverman 27:11
So there would be times where I wasn’t able to speak, but I knew exactly what was happening, so I wrote that all down, and then the end of the book is just turned on trees for about a year. So I did that, and it’s just documenting like what the early stages of life are like for me after I had all the surgeries and stuff.
Bill Gasiamis 27:37
Why did you decide to write the book?
Rachel Paverman 27:40
So what really inspired me to write a book is that my mom used to sit with me in ICU, and I used to not be able to see anything, so she would get memoirs from other people who had brain injuries and just read them to me. So that’s really what inspired me. There was one specific author that, had her surgery somewhere close to where I lived, and then she had her rehab experience at the same hospital that I have it at. So I was really inspired by her story.
Bill Gasiamis 28:23
Why is it important to read other people’s books and to get an understanding of other stories about stroke recovery? Now you’re, you’re reading the book X amount of years out after the stroke, right? What are you trying to do, what? How are you trying to use that book? What’s the point of it?
Rachel Paverman 28:44
The point of my book is to really just inspire other people and show other people, especially the CCM community, that anything is possible, and just be positive and try to put your best foot forward every day, and what we’re going through is definitely difficult, and you know, I I can understand that, and I just want other people to know that it’s okay and that I understand there’s other people that understand, and there’s something good on the other side of it.
Bill Gasiamis 29:22
But some people, so you may know that I’ve written a book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s basically describing that there’s some good things that come at the end of it afterwards, and it comes through personal growth and by doing certain things that help improve your condition. Don’t matter how bad your situation is, you can always improve your condition somehow.
Bill Gasiamis 29:48
And it’s really that. It’s about telling people that down the road, when you reflect back, there might be some personal growth, there’s some opportunities that came up as a result of your. Or experience that you never imagined were possible, is that your experience all these are there, are there things that you reflect on that seemed really terrible at the time, but looking back, there are some silver linings and some awesome opportunities that have appeared.
Rachel Paverman 30:20
Definitely. I mean, I was just saying to someone yesterday, obviously, what happened to me was very terrible, but I lost my ability to drive. And the silver lining is that I see my parents a lot more now. I wasn’t I was never not close with them, but I see that a lot more frequently now than I used to, and it’s made us closer. I’ve also got closer with my sister, and I’ve also been, you know, just I’ve been given opportunities that have only come about because I’ve I’ve went through what I’ve went through and I experienced sort of experience, and I just life is just like different for me now.
Bill Gasiamis 31:10
Yeah, what are the some of the major challenges that still trying to overcome right now?
Rachel Paverman 31:19
For me, I would say the biggest challenge is accessibility. So I use a walker, and I also use a wheelchair depending on what I’m doing or where I am. And I think, like I actually listened to a podcast recently, and someone made a very good point that if you’re disabled, like we’re not living in a disabled world. So we’re trying to navigate in a world of people who aren’t really, I mean, the world isn’t accommodating always to people with disabilities.
Rachel Paverman 31:58
If you never experience that, I don’t think you’d like realize it, but because I I don’t think I did. But now that I’m living in that world, I see, you know, is there a push place to get in, all the doors? Is there ramps? Is there grab bars in the bathrooms? And I’m finding that there’s really, there are in some places, but overall, I would say no, and it’s it’s really unfortunate, and I think that maybe it’s something that eventually the world can change in the future, but as of right now, that’s something I really struggle with.
Emotional And Mental Recovery After Cavernoma
Bill Gasiamis 32:39
You struggle with it, physically, obviously, navigating the obstacles, but you also struggle with it, emotionally and mentally.
Rachel Paverman 32:48
I do, so I see therapist, and he’s definitely helped me a lot. But I think, like, the one thing that I really struggled to move past is the fact that, like, my life is so different now, and I just, I think that, like, my life before, I always say, like, I don’t know who that version of Rachel is anymore. I don’t even remember, like, what it’s like to get in my car and go get a cup of coffee or just be able to do like what I want on my own time. I depend on a lot of other people for things that I used to be able to do on my own. So that’s something I think mentally, that I struggle with the most.
Bill Gasiamis 33:43
Where do you live? Which part of the United States.
Rachel Paverman 33:48
I live in New Jersey.
Bill Gasiamis 33:51
And what’s it like navigating the sidewalks and the roads and all that kind of stuff with a wheelchair?
Rachel Paverman 33:56
So it really depends on the town and I think for the most part, I have no key time doing that. But I said earlier, I like to go to parks, and the issue with that is that there aren’t a lot of accessible parks, and there I found a few, and those are the ones that I frequent and visit most often. But I struggle with like, I guess, you know, like, I’ve had surgeries in New York City, and there’s no way that I could live in New York City.
Rachel Paverman 34:35
I feel like the roads there and the sidewalks are so difficult and uneven and but here in New Jersey, I think, like the parks and stuff, and trying to find places where I can go to enjoy I struggle with more so than I guess, like the sidewalk scenario.
Bill Gasiamis 34:57
Yeah, many years ago we traveled to. Athens in Greece, and it was just after my first brain bleed, when I say just after, it was about nine months, 10 months after my first brain bleed, and my condition still wasn’t resolved. But of course, I had the opportunity to understand what it was like to have a brain injury and a condition that made life quite difficult at the time, and I remember trying to walk on their particular footpaths, what we call footpaths, you guys call sidewalks. And they don’t really have anything that’s useful to actually walk on.
Bill Gasiamis 35:50
I mean, it’s so terrible the condition of the paths in the city of Athens most normal, able bodied people wouldn’t be able to navigate them properly because they’re so narrow, they don’t fit a number of people in there. Some of them have steps from the buildings, decreasing the space that people have to walk on. Some of them have trees in the middle of the path, and they’re made out of what is now very shiny marble that maybe wasn’t very shiny back in the day when they first built it. So they’re very slippery, so in the rain, they’re really treacherous to navigate.
Bill Gasiamis 36:34
And when we were there in 2013 my cousin has an injury to one of her legs, and as a result, she can’t walk the way that able bodied people can walk. She really relies on steady ground, a good surface, with grip, etc. And she took us out into the city, and just helping her get to and from the car and the destination that we were going to was quite a task, because she was, you could tell she was concerned about finding her feet the entire time, like every step was a safe step for her to take, and then at one point, she slipped and fell and she broke her other she fractured her other leg, and it was such a terrible example of how inaccessible a lot of places are now.
Bill Gasiamis 37:35
Where we live in Melbourne, in Australia, it’s very accessible in that they’ve taken. They’ve put a lot of time and thought into the roads and the paths and how people might navigate a path. Most paths are quite wide, two people could easily walk on a path going either direction or even next to each other, and then they’ve got those little in the curbs, they’ve got those little ramps that go down one curb and up the other curb. So if you had a wheelchair, you could easily roll down the curb and then you can go up the next one. And they’re not they’re not that steep at all.
Bill Gasiamis 38:14
They’re very well maintained. And one of the things that they’re trying to do now is make public transport more accessible. So when you go to a train station, anybody in a wheelchair should be able to just drive straight into the train and park in a spot that’s been allocated for people with wheelchairs. And also, we’ve got a tram system here, and the sort of lagging behind in that area of getting the trams to the right state where people can also drive up and enter the tram in exactly the same way that they would have trained.
Bill Gasiamis 38:56
So there’s only in the particular area that we live the the tram line is missing some platforms at certain stops, and even that, when I look at it, and I think about somebody in a wheelchair trying to get say to the central business district from our area, and if they can’t get to the train station, and they go by tram. They have to get to a tram that’s to stop, that’s further away, perhaps from where they live or where they want to go, and if you have to do that in the rain, that’s really uncomfortable.
Bill Gasiamis 39:34
If you have to do it in cold weather, it’s uncomfortable. In hot weather, it’s really uncomfortable. It makes the effort that somebody in a wheelchair has to put in way more effort they require way more effort to get the same outcome that other people would have. You ever found yourself in a situation where you’re in the wheelchair and you’re stranded or you’re impacted by the weather, and then that’s kind of ruined your intention to go to a particular place.
Rachel Paverman 40:09
Well, it’s not weather related, but something comes to mind that actually happened yesterday, I was at a venue for a sporting event, and there was supposed to be a ramp that or a lift that brought you up the steps, you go on the wheelchair, and then it brings you up the steps. It’s like automatic, and it wasn’t working. So it wasn’t available for me to use with a wheelchair.
Rachel Paverman 40:45
So the security guard was like, oh, you know, can you walk like, are you able to walk like, I mean, yeah, but I can walk, but do I have to? And it was only a few steps up, which was fine, and I had no problem doing it, because I’m able to, but I really felt for people who could have been there that day, that were in a wheelchair, that weren’t able to walk, and what would happen then, you know, so It’s just interesting to see, like, when you’re when you’re somebody that’s in a wheelchair that needs that type of health.
Rachel Paverman 41:28
It’s hard for people who don’t understand that to like, relate to it and understand like, why those things are so important. And yeah, I think too. I went to a wedding a few months ago, and the vet like, it’s, you know, the venue was not very accessible, and the reasoning behind that was because they said it was a historical venue, so that way they were grandfathered in. And I had a family member that was in a wheelchair, and she really struggled to get around also.
Rachel Paverman 42:10
So for me, I was in a wheelchair, but I’m able to walk and get around and get through those difficult situations, but there are people that can’t, and it’s just really sad sometimes to see like how the world is, and people don’t always understand that, and they’re not always empathetic to that.
Bill Gasiamis 42:33
Yeah, they’re not willing to help out, because they don’t understand how important it is to go down that path and help somebody in a situation like that, when a historical building is the excuse, does that mean that they are not allowed to interfere with that historical building, or they are or they have an exemption from making it accessible?
Rachel Paverman 43:00
I’m not actually sure, but I think when we were told that, I believe that it was because they were grandfathered in, so that way they didn’t feel like they needed to make it accessible, because they had gotten away with it not being accessible, and they wouldn’t get in trouble for that. But I can’t really speak on it, because I’m not exactly sure, but that’s kind of what I was taking away from it.
Dealing With Tarsorrhaphy
Bill Gasiamis 43:28
Yep. Fair enough. I also noticed your one of your lenses on your glasses is, what do we call it?
Rachel Paverman 43:38
It’s fogged out yeah.
Bill Gasiamis 43:40
Fogged out. So what does that help you deal with?
Rachel Paverman 43:45
So after my surgeries, I had a Tarsorrhaphy So they had essentially stitched my eyes shut because I wasn’t I don’t produce tears and I don’t blink. So on there to protect it, and then I had that on for about two years, and they opened my eye up, but I now experience double vision. So when I blur out one side of my glasses, it helps relieve the double vision and rest my eyes a little bit.
Rachel Paverman 44:22
Because I also have nystagmus, so my eyes are also bouncing up and down like a basketball all the time. So that mixed with seeing double of everything is very exhausting, so I use these when I’m on the computer or on my sunglasses to kind of help make it a little bit easier on my eyes.
Bill Gasiamis 44:50
When you say it’s exhausting, is it physically exhausting?
Rachel Paverman 44:54
I honestly, I think it’s mentally exhausting. I will, It’s so hard for me, like, when I’m having a conversation with somebody, to focus on their eyes, and there’s right legs and my my eyes are moving around. So there’s just a lot going on in my head. So when my eyes aren’t right, it kind of just, like, adds to that. So for me, I think it’s more mentally exhausting, but it’s also physically exhausting at the end of the day.
Bill Gasiamis 45:29
Yeah, when you say mentally exhausting, it’s not psychologically exhausting, although that would also impact people. I get that like it, it exhausts your brain, right? Does that tell that what you mean? Yeah.
Rachel Paverman 45:42
I think too, I was telling someone recently at supermarkets, I don’t know if you experience this, the lights are just so bright fluorescent. And I actually just heard that the reason behind that is because it makes the all the fruits and vegetables look fresher. So because wherever I’m in, like Walmart or food shopping, I have to wear sunglasses because it’s so bright, and it really just like hurts my head, and there’s just so much like stimulation happening between that and trying to look at the shelves and everything on the shelves.
Bill Gasiamis 46:27
I’m sitting here in front of a light that’s right there, and one to the left of me, and they’re fluorescent in color. They’re sort of bright white, and it’s important for having a decent image when I record, and it’s so tiring, like the one hour podcast episode that I sit here, I get through them, and I’m kind of used to it, and as soon as it’s done, the lights are off and I’m outside trying to recover, but it is so tiring, And I would love to use sunglasses on a podcast interview.
Bill Gasiamis 47:03
If I could. I never have, but it would be great, but I do, yeah, I should, but it doesn’t make a for a good visual. And it’s only an hour, it’s only an hour like it’s temporary, and it’s not every day. But I do also struggle with lights that are fluorescent in shopping centers or stores or offices or anywhere where I go. And at our house, the lights go off. There’s no lights on above my head. So if I’m sitting, unless we’re sitting and eating dinner, which is necessary to have some lighting above the head, that’s all good.
Bill Gasiamis 47:49
But if we’re sitting down, just chilling out watching TV, the lights might be on other parts of the room, further away, but next to me, there’ll be a lamp that’s got a really warm glow light globe so that I don’t have to deal with lights like that. And in our bedroom, I’ve got this little battery operated string lights, and then they’ve got little LEDs on them. You can buy them at the hardware store, and they’re really designed for they’re called, like, fairy lights.
Bill Gasiamis 48:25
They’re really designed for events. You know, you put them in the back yard when you’re having a nighttime event, and they make pretty little light features. And I use those as my night light so that it’s nice and dim. It just creates enough light so it’s not dark, but it doesn’t stimulate my head just before I go to bed, and in the in the evenings, if I wake up and go to the toilet, I try and do it in the dark. I try not to switch on any lights, because.
Rachel Paverman 48:59
Me too, I do the same thing. That’s so funny.
Bill Gasiamis 49:01
Yeah, right, okay, so that’s gotta be a thing that heaps of people do, because if I open the lights, I switch the lights on, then I wake up, and then it’s impossible to get back to bed, and then I’m not rested. Same issue. Yeah. So I’ve really got good at navigating my my house at night in the dark, and getting little jobs like that done in the middle of the night, and even getting some water. I try to make sure that I don’t switch on any of the lights. It’s just not worth it, right? Have a really massive impact on the brain.
Rachel Paverman 49:40
The same thing. The only problem is that the lights are off and I’m on the toilet or something, and my vision is so bad that I think, like, there’s someone from like, the corner of my eye on my paranoid I’m like, Oh my God. I think someone’s like, in my apartment. Like every night, and it’s obviously never the case, but my eyes are so bad, ours my brain, and it’s like tricking me into thinking something’s there when it’s not.
Hearing Issues After The Cavernoma Surgery
Bill Gasiamis 50:13
Yeah, you have to rely on your ears for that then? Did you get any impact on your ear on that side as well?
Rachel Paverman 50:25
Oh, yeah. So actually, I forgot to mention, after my first surgery, to access the cavernoma, they had to cut through the surgical site is behind my left ear, and to access my brainstem, they had to cut my hearing nerve. So I have total hearing loss in my left ear, and that was a result of my surgery, rather than the fleet.
Bill Gasiamis 50:57
Okay, so that’s why is definitely impacted really heavily, and perhaps part of the reason why your book is so heavy. Do you go into detail describing the kind of challenges that you are facing with regards to your body in the book?
Rachel Paverman 51:16
Well, the problem is that, like early on in my recovery, I was very like sheltered, and because covid was happening, I wasn’t in the community so much, but I didn’t write about that in my book so much. But as I’m back in the world now and experiencing life every day, I’m realizing how much of an issue having no hearing really is and I don’t know if it’s because I have trauma to my brain and I have trouble processing sounds, or if it’s because I truly, like can’t hear.
Rachel Paverman 51:58
But if I’m in a setting where there’s multiple conversations happening at once, like there is absolutely no shot that I would be able to hear you, and it’s something that I’ve struggled with, like, almost more so than some of the other deficits, just because it’s, it’s it’s really hard to be social and to be myself when I’m not able to hear and I’m embarrassed that I’m going to say something that’s not the correct answer because I didn’t hear correctly. So I tend to stay quiet when I’m out, and that’s mostly due to the fact that I have trouble hearing.
Bill Gasiamis 52:43
Okay, so that’s a common thing. Like I hear about a lot of strokes of overs who say that they struggle with conversations even if they haven’t got hearing loss. The multiple streams of information makes it really tiring for the brain and really hard for them to keep track of multiple conversations, and they often take a step back in those situations.
Bill Gasiamis 53:12
Do you feel like you take a step back? Because what is it like? It wouldn’t be embarrassing, would it if you said the wrong thing or gave the wrong answer to a question that you didn’t hear properly? People mostly understand, don’t they? Isn’t it kind of okay or like they just what is it? Is a confidence thing? Is it a?
Rachel Paverman 53:38
I’m not exactly sure, like what it is, but I think part of it is the fact that, like, I don’t always speak up for myself, and I don’t always tell people hey, I don’t have hearing in this eye. So like, I might not always understand you, and it’s really hard sometimes to be so I have, I have a boyfriend now, and we go out a lot, and if we’re trying to be social around other people, I’m very particular about like, where I feel comfortable being and who I’m comfortable being around.
Rachel Paverman 54:14
Like, if I’m meeting new people, I would much rather meet them in the quiet of my house, rather than out at like a loud restaurant in the evening. But if I do know you, and you know my situation, and you know that it’s hard for me to hear, then I’m totally fine with being in a loud setting. But if I’m first meeting you, I’d really like to make like an impression for people to see, like the real me and not the me be out and not able to hear much.
Bill Gasiamis 54:50
I hear you. Okay, so that’s that’s pretty smart, actually. That gets you kind of gets you feeling good about. The encounter in the first place, you can build rapport with that person. You can get to know them. They can get to know you. Instead of being in a public place where you’ve met somebody and then having to tell them, I can’t say probably from this eye, or I can’t hear from this ear, and go through all of the rundown on all of the things that you can’t do, most people wouldn’t know how to react to all of that anyway, but I like that picking your location, that’s a really good way to overcome some of that.
Rachel Paverman 55:30
I just. I just want people to see my personality and see who I am as a person. Like I would like to say that I’m pretty outgoing, but if I’m in a public setting, like there’s a lot of times when I don’t show that I’m outgoing because I’m just so timid, because I’m afraid of what to say, or not being able to hear or having offered this when I say what, 10 times in a row, I don’t know. I just, I don’t know. It’s created a lot of, like, social anxiety for me. I think, like, part of it is covid, but also part of it is the fact that I have trouble hearing it.
Bill Gasiamis 56:14
Yeah. Look, I think you’re overthinking it, but it’s also good to protect yourself in that way. If you feel like you need to kind of step back. There’s nothing wrong with that as well. You don’t always have to be outgoing. You don’t always have to be the life of the party. You can take a step back and be somebody who just sort of observes and listens rather than totally gets involved.
Bill Gasiamis 56:37
There’s no issue with that. But if it’s a but if you’re overthinking it, and you’re kind of getting in your own way, that’s something to consider as well, like, if most people aren’t, if you’re in a place where you know most people, no one’s going to really take it the wrong way. If you have to say, what, what did you say? Or what was that about? But I get you trying to avoid the difficulty of a conversation that normally would flow, and then it kind of gets interrupted by all of the the Watts and the I didn’t hear that. Or can you repeat that?
Rachel Paverman 57:14
Right, It’s, it’s, actually, it’s very interesting that you say that you know people who don’t have hearing loss, but they have trauma to their brain and they have issues with processing. I always thought that it was just my hearing, but I recently started thinking that it might be like my processing as well. I had Neuropsychology testing done, and it showed that I have trouble processing. So I think that’s just exactly what it is, is that it’s hard for my brain to decipher, like one sound from another and process it, to hear it.
Bill Gasiamis 57:55
Yeah, I remember going to parties when I was first diagnosed, and had a whole bunch of neurological issues. I remember going to parties and telling my wife, like, we need to go home. It’s 930 I need to get out of here. I can’t be here anymore. It’s I’m struggling. And I was struggling with the music, the lights, the multiple people talking to me. It was physically and emotionally exhausting, and the best place for me was to not be there. So I would just go in, apologize or thank the person for the invitation and for having me there, etc. And then I would just get out of there.
Bill Gasiamis 58:35
And it was self preservation. So it’s really important to do that and not feel bad about it, if, if you have to get out of a a difficult situation when your senses are overwhelmed. I mean, it’s really important to just go I’ve had enough, or to do what you did, which is what I started doing later, which was you just turn up, and then you don’t participate too much, but you’re there, and you’re experiencing the party, and you’re with the people, but you’re kind of sitting in the dark corner where not too many people are around you, on a chair, where no one else is going to sit next to you.
Bill Gasiamis 59:17
Like I did that a lot as well, and that got me past 9:30 so that might have got me to 10:30 or 11:00, which meant that the my my wife, could appreciate being out and about and catching up with people, but also I didn’t have to run out of battery by 9:30.
Rachel Paverman 59:33
Right? Yeah, I think that’s something I struggle with too. My social battery it drains so fast, like maybe an hour, and I’m just I’m so tired. So I definitely understand that also, and I think that I used to do a better job myself, of like listening to my body sometimes, and not always being. A people pleaser, which I tend to do that a lot, and not be like, not be selfish, but be selfish and listen to my body more.
Bill Gasiamis 1:00:11
It’s important. What’s the hardest thing about this whole situation for you? What do you feel like has been the hardest thing that you’ve had to navigate?
Rachel Paverman 1:00:21
Definitely the fact that I, I’m just, I lost the old version of me. I lost my own life. And not to say that’s not, it’s my life is right now, and I love everything that I’m doing in my life. I love where I am in my life right now. But it’s just really sad sometimes to, like, look back at old photos of myself or I used to play soccer, so thinking about me playing soccer and reminiscing with my friends, and just knowing that, like, I will never be able to play soccer again or do some of things that I used to do. So for me, that’s the hardest. And I know that my life is great now, and it’s just different, but it’s it can definitely be hard to deal with that sometimes.
Bill Gasiamis 1:01:15
Yeah, have you seen some of those Paralympians that play those crazy wheelchair sports.
Rachel Paverman 1:01:25
I have seen that actually. My prospect coach also told me about they have like adaptive skiing, and she went to Colorado, and she was, she volunteered to life health with that so and I, I’ve seen like adaptive, like ice hockey and other things like that, which is so awesome.
Bill Gasiamis 1:01:47
Adaptive Ice Hockey would be good. You could still go onto the ice, have a fight with everybody, and feel quite normal. You know, skate on and straight off, however they do it. It would be really cool.
Rachel Paverman 1:02:00
Yeah, yeah. I will say, like, the world, as much as I said before that it’s not accessible. They’re also, like, super inclusive with some of the programs that they have out there for the disabled community.
Bill Gasiamis 1:02:17
Yeah, it’s getting better. I know it’s there’s a lot of work to do, but it is getting better. I see it every day because, like you, I pay attention to these things, and it’s always awesome to see people participating in well, you know, those really competitive people that they need to win and succeed at everything that they do. It doesn’t matter whether they’re missing legs or or arms or whatever, you know, but they just need to be in competition somewhere.
Bill Gasiamis 1:02:46
And I feel like there’s a lot more opportunities for people like that to find leagues where they can be competitive and get that out of their system at least, and feel accomplished or get rid defeated really badly, and then get back up and play the next game and see what they can do. And that helps create a community as well, right, a sporting community that is about sport and their passion.
Bill Gasiamis 1:03:12
But that allows for people with other conditions to attend and to get all the benefits from it right. It’s really important to get to to get the benefits from being able to attend to things. So I am liking where things are heading. But of course, there is a long, a long, long way to go in most countries. Most definitely. What is something that this whole experience has taught you?
Lessons From The Stroke
Rachel Paverman 1:03:52
I think it’s taught me to be grateful and to appreciate the little things in life, because for a while I wasn’t able to hold a fork or brush my teeth, or I’m still learning how to write, because the right side of my body was what was affected, and I was a variety. So I’m now learning how to live life with my left hand, so just little things like being grateful to shower and but I used to have to have health in the shower, and now I’m able to stand with the grab bar.
Rachel Paverman 1:04:35
But those are things that I now appreciate So much more, and just like being able to take a beautiful day for what it is and enjoy the sunshine, and be able to go on my like stationary bike and just like live a somewhat independent life and just have so much appreciation for it.
Bill Gasiamis 1:05:00
There are people listening that are on similar journeys to you and I going through their own stuff. What is something that you would like to tell them about this time and the challenges that they have?
Rachel Paverman 1:05:17
I think that what I would tell them is to just be patient with your body, and it doesn’t happen overnight, like we all know for an injuries take forever. I’m five years out, and I’m still seeing improvements every day, and sometimes I plateau, but I always continue, like moving forward and just be positive, because I know the vagus nerve connects the mind and the body, and it’s so important to have good mindset when you’re physically recovering.
Rachel Paverman 1:05:57
And just like taking care of yourself and eating good foods and really just being patient with yourself is the main thing. Because it’s a slow process, but it’s a process that always, well, you’ll always be improving. You know, for whether it’s a slow improvement or a fast improvement, or if you plateau a little bit you’re always going to be improving.
Bill Gasiamis 1:06:24
Your book is called?
Rachel Paverman 1:06:28
My book is called “To the Abyss”. It’s available on Amazon. And then I also have a website.
Bill Gasiamis 1:06:39
Yep, Tell us. Tell us about the website. By the way, anyone watching and listening, they’ll be able to go to the show notes to get links to Rachel’s socials and the website and the Amazon book just go to recoveryafterstroke.com/episodes and you’ll find Rachel’s episode there. But anyhow, tell us the website link.
Rachel Paverman 1:07:02
Yeah, so my website is just my first and last name. So www.rachelpaverman.com, and on there is just a little, a little bit about my story, and then I’ll link to purchase the book, as well as some photos of while I was like in the hospital and early on in my recovery, when I was writing the book, as well as I have a tab called in the media and in the alliance as well. So it gives a little information about the organization that’s very close to my heart, and then in the media is just some of the stuff that I’ve done and other podcasts and like folks chats and stuff.
Bill Gasiamis 1:07:52
Excellent. Rachel, I really appreciate you reaching out. Thank you so much for being on the podcast and sharing your story. Congratulations on your recovery so far, you’re doing an awesome job. I love the way you’re going about it. I look forward to hearing about all the amazing things that you continue to achieve down the track.
Rachel Paverman 1:08:12
Thank you so much. It was so great to meet you.
Bill Gasiamis 1:08:16
That’s a wrap for another episode. I hope you found Rachel Paverman’s journey through cavernoma and brain hemorrhage as powerful and as barring as I did. A huge thank you to everyone who has already left the review, It does mean the world to me. Your feedback is crucial for the podcast success, helping others discover this valuable content, and making their stroke recovery journey a bit easier.
Bill Gasiamis 1:08:40
If you haven’t left a review, please consider giving a five-star rating and sharing what the show means to you on iTunes and Spotify for those of you watching on YouTube, remember to leave a comment below, like the episode and subscribe to the show to get notifications of future episodes. If you enjoyed this episode, please consider supporting the podcast by subscribing to our Patreon Page at patreon.com/recoveryafterstroke, your support allows us to continue sharing these vital stories and keep the podcast available to all stroke survivors. If you are a stroke survivor with a story to share. Now is the perfect time to join me on the show.
Bill Gasiamis 1:09:23
The interviews are unscripted, and you do not need to prepare for them. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact, fill out the contact form with your category, and I’ll get back to you with details on how we can connect via Zoom. Thanks again for being here and listening. I deeply appreciate you. Your support means everything to me. See you on the next episode.
Intro 1:09:59
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 information or 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 1:10:33
It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:11:07
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, 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.
Intro 1:11:36
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 How Rachel Paverman Overcame a Cavernoma and Hemorrhagic Stroke: A Story of Resilience and Hope appeared first on Recovery After Stroke.
1 hr 16 min
August 20, 2024 Sunny’s Inspiring Stroke Survivor Story: A Journey of Recovery and Transformation
A Stroke Survivor’s Journey: From High Blood Pressure to Personal Transformation
Introduction
The journey of a stroke survivor is often marked by a profound transformation—one that encompasses not only physical recovery but also emotional and spiritual growth. For many, this journey begins unexpectedly, as was the case for Sunny Kakaiya, whose life took a dramatic turn after suffering an ischemic stroke caused by high blood pressure. In this blog post, we explore the various facets of a stroke survivor’s experience, from the initial shock to the ongoing process of recovery and personal transformation.
The Stroke Survivor Experience
Sunny’s stroke recovery journey began on January 4th, 2021, when a blood clot disrupted the flow of blood to his brain. This event not only threatened his physical health but also challenged his identity and sense of self. For stroke survivors, the sudden onset of symptoms—whether it’s loss of movement, speech difficulties, or cognitive impairments—can be disorienting and frightening. The experience often forces individuals to confront their own mortality and the fragility of life.
High Blood Pressure and Stroke
Sunny’s stroke was directly linked to his high blood pressure, a common yet often overlooked risk factor for stroke. Like many others, Sunny was hesitant to take prescribed medications due to concerns about their long-term effects on his body. Unfortunately, this decision contributed to the severity of his stroke. High blood pressure is one of the most significant risk factors for stroke, and managing it is crucial for both prevention and recovery.
The Emotional Challenges of Stroke Recovery
Beyond the physical impact, stroke survivors face significant emotional challenges. Sunny’s journey was no different. He grappled with feelings of frustration, fear, and grief—especially after the loss of his mother, who had been a pillar of support during his recovery. Coping with stroke-related identity changes can be particularly difficult, as survivors often feel like a shadow of their former selves. The emotional toll of navigating these changes can be just as challenging as the physical recovery process.
Meditation for Stroke Recovery
In the midst of these challenges, Sunny turned to meditation as a tool for healing and personal growth. Meditation has been shown to have numerous benefits for stroke survivors, including reducing stress, improving mental clarity, and aiding in the recovery of cognitive and physical functions. Sunny practiced meditation daily, using techniques such as pranayam and the Wim Hof method, which helped him regain control over his body and mind. For stroke survivors, meditation can be a powerful way to reconnect with oneself and foster a sense of inner peace.
Personal Transformation After Stroke
Sunny’s stroke marked the beginning of a profound personal transformation. Before his stroke, he often postponed pursuing his dreams and goals, but the experience of nearly losing his life inspired him to live with greater urgency and purpose. Sunny’s determination to walk again—despite being told it would take two years—exemplifies the resilience and strength that many stroke survivors discover within themselves. His journey is a testament to the idea that a stroke, while devastating, can also be a catalyst for personal growth and self-discovery.
Coping with Grief and Identity Change
One of the most difficult aspects of Sunny’s recovery was coping with the grief of losing his mother, who passed away during his recovery. This loss compounded the emotional challenges he was already facing, as he navigated the identity changes brought on by his stroke. Through counseling and spiritual practices, Sunny learned to honor his mother’s memory while continuing to move forward in his recovery. For stroke survivors, coping with grief and identity change requires patience, support, and a willingness to embrace a new sense of self.
Conclusion
Sunny Kakaiya’s story is one of courage, resilience, and transformation. His stroke recovery journey highlights the complexities of being a stroke survivor—balancing physical recovery with emotional healing, managing the impact of high blood pressure, and ultimately embracing a new identity. For those on a similar path, Sunny’s experience offers hope and inspiration, showing that even in the face of adversity, it is possible to find strength, purpose, and personal growth.
If you or a loved one is navigating the challenges of stroke recovery, remember that you’re not alone. Whether through meditation, counseling, or connecting with other survivors, there are many ways to support your journey toward healing and transformation.
Inspiring Stroke Survivor Story With Sunny Kakaiya
Sunny Kakaiya shares his inspiring stroke recovery journey, from high blood pressure to transformation, resilience, and regained independence.
Facebook
Highlights:
00:00 Recovery After Stroke Patreon Page
02:05 Stroke At New Year
05:08 Trying To Avoid Taking Medicines
12:52 Stroke Caused By High Blood Pressure
16:04 Waking Up After A Coma
19:42 The Physical Deficits
22:46 Losing Weight And Regaining Speech
31:00 Taking Courses For Stroke Recovery
42:12 The Impact Of Words In Stroke Recovery
48:16 Dealing With Pseudobulbar Affect
1:00:08 Plans For The Future
1:10:47 Lessons From The Stroke
Transcript:
Recovery After Stroke Patreon Page
Bill Gasiamis 0:00
Hey, there, everyone. I’ve got a little bit of news to share with you. For those who have found relief or encouragement or simply benefited from the recovery after stroke podcast, I’ve recently set up a Patreon page to help keep the podcast running since 2017 I’ve been covering all the costs myself, but now I’m reaching out to our amazing community for a little bit of support.
Bill Gasiamis 0:23
If this podcast has helped you on your recovery journey, joining our Patreon is a way to give back and ensure it stays available for others who need it. Your support will help cover the costs of recording, editing, and hosting, so that we can keep bringing you the content that’s made a difference in your life.
Bill Gasiamis 0:23
It also supports the transcription of episodes into subtitles on YouTube, making the podcast accessible to listeners with hearing challenges. For those of you who appreciate that, this podcast exists for stroke survivors everywhere, Your support helps with web hosting, and maintenance, keeping everything running smoothly and ensuring the podcast remains a resource for everyone.
Bill Gasiamis 0:42
Membership starts at just $5 a month, and every little bit helps. If you’d like to support the podcast, head over to patreon.com/recoveryafterstroke. Your help makes a big difference, and I’m so grateful for your support. Thank you.
Introduction – Stroke Survivor Story With Sunny Kakaiya

Bill Gasiamis 1:23
This is episode 317 and today I’m thrilled to bring you the inspiring story of Sunny Kakaiya, a stroke survivor who has turned his life around in remarkable ways after suffering a stroke due to high blood pressure, Sunny faced immense physical and emotional challenges, but through determination, meditation and sheer willpower, he not only regained his independence, but also transformed his life. Join us as we dive into Sonny’s incredible journey of recovery and personal growth. This is one episode you will want to listen to.
Bill Gasiamis 2:01
Sunny Kakaiya. Welcome to the podcast.
Sunny Kakaiya 2:05
Thank you, Bill. It is an honor to join you and talk to you. I see every video you posted on YouTube, and it’s really motivating for me, also, from that standpoint, to see the journey of people who have gone through and how they overcome, and that has actually given me a hope that I will be soon completely fine like so I’m very positive about that. It’s been three years when the stroke has happened, exactly Jan 4, 2021, first working day of the year.
Sunny Kakaiya 2:56
So we celebrated and everything was there with friends. And on January 4, I started my business, and the stroke happened. So I still remember that day, very, very evident. It is still in the front of my eyes. I actually visualized what actually happened. I do some meditation techniques. So I go back in that period and see what happened to me, how I reacted, how my mom reacted, my neighbors. So everything I see, I try to heal myself from that standpoint.
Bill Gasiamis 3:47
So what exactly happened to you? Tell me, like, did you notice something wasn’t going well? There was some issues with your health. What did you notice?
Sunny Kakaiya 4:00
There was a history that six months back from the time the stroke happened, I was at a business trip to Hyderabad, and when I entered the office, I started sweating and I was feeling uncomfortable. I immediately raised it to the medical assistant, and they took me to the hospital, and then I was admitted in ICU.
Sunny Kakaiya 4:02
They monitored my heart and stuff, later on the doctor told me that you have a high blood pressure because of that, you are experiencing this uneasiness and drowsiness, and so he told me to take medicines, and later on, I was back to my home location at Mumbai.
Trying To Avoid Taking Medicines
Sunny Kakaiya 5:08
I will tell you that I was little bit hesitant, hesitant to take a medicine, because putting a chemical in my body, that was something my past memory, my father had cancer, and the cancer was developed because of consuming medicine. He was have. He was having acidity issue, and for that reason, he was consuming one medicine continuously in the morning and the in the evening.
Sunny Kakaiya 5:43
So from that standpoint, I had in my mind that I should not put medicine in the body which will harm my body in long run, because I’ve seen my father’s journey, because cancer is painful, six chemotherapies, and then the operation, the esophagus was stretched and removed.
Sunny Kakaiya 6:08
So everything I have seen it. So from that, I was scared to put medicine in my body. Then I decided not to take blood pressure medicine. And that was a fault. And I would say, whoever has a blood pressure, we have to take medicines, or we have to take alternative things where we can do, maybe prana, maybe meditations or exercise or yoga or something with that.
Sunny Kakaiya 6:44
So it doesn’t impact our lifestyle from that standpoint. And it was a period of covid when this happened, so it was second lockdown in India, and we, we were not allowed to go out. But that period, for that specific one, two weeks, there was some ease. So I went to bank and I came, came from bank around 12 o’clock.
Sunny Kakaiya 7:21
I My mom was cooking food for a for the afternoon, and I went on a business call because my call was scheduled. The moment happened that. 10 minutes after that, I just lurched on the right hand side, and I completely lost in that pattern. Then I kept the call, I called mom, mom didn’t understood what has happened to me.
Sunny Kakaiya 7:54
Then neighbor was called off. They took me here, then for 15 minutes, I regained my movements again, because of someone had given a massage of red chili powder on my legs, because they said, on your feet if you scrap the red chili powder with the water, this will regain.
Sunny Kakaiya 8:32
And actually it regained, and I was able to walk and go down I stay on the 4th floor. So I went till second floor, and again I lost my connection to the brain, and I was not able to so I my friend, school friend who was with me. He supported me, and then all the neighbors came to help, and it took me to the hospital.
Sunny Kakaiya 9:07
But that journey to the hospital was from 12 o’clock. It almost took one and a half hour I reached off hospital. One and a half after once I reached hospital, they started giving me an injection. They knew that I got stroke after examining me, and they started giving the injection which will break the clot.
Sunny Kakaiya 9:40
So from that time, they waited till eight o’clock. Twice, they gave me the injection. I was having some movements of my hand and legs, but it was, it was. Not that frequent, like a normal person, but they said to you, they sent me to relax, and then still started giving the injections. Once that was done, eight o’clock, they told my wife and my mom that we have to operate.
Sunny Kakaiya 10:22
And then they took me to the operation theater at around 12 o’clock in the night, and they started me so I just remember I was on an operation theater, and they gave me the anesthesia they counted from 10, 9, 8, and I went off, and then the operations happened. The strange thing is that when I woke up, I asked my wife what day it is.
Sunny Kakaiya 10:57
Because I went on Monday, I thought today is a Tuesday, but my wife told me it is a Friday. So on four days I was on ventilator. Doctor told my family and my friends that there is a 50-50, chance that he would survive until he comes conscious. So from that period when I came conscious, I asked my wife, mom, and family members at what day it is and where I am, right?
Bill Gasiamis 11:41
I was going to ask youdo they know why you had high blood pressure?
Intro 11:47
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 12:12
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying and head to recovery after stroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 12:31
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Stroke Caused By High Blood Pressure
Sunny Kakaiya 12:47
Yes, I had a high blood pressure because we were in covid times, we were not having much of activity to the to be done. We were sitting at home, and for that reason, I developed high blood pressure.
Bill Gasiamis 13:14
Okay, so you’ve got high blood pressure, the high blood pressure caused the clot, the clot went into your head, yeah, and then to remove the clot, they tried to give you the clot busting medication, TPA, that didn’t do the job 100% and then they went and operated. Did they go in from your groin, in your up into your arteries? How did they operate?
Sunny Kakaiya 13:41
They inserted the catheter in thighs, from thighs they it gave me till here. I still feel something when there is winter or rainy season, I can feel the pain over here, because still, right now, it is rainy season in India. So whenever it happens, it happens that I feel that there’s something which is pricking me, or something that sensation is there.
Bill Gasiamis 14:19
What kind of work were you doing? What type of employment did you have?
Sunny Kakaiya 14:26
I was a consultant. I work for Accenture at that time. So I was a learning management consultant. Specifically, I lead finance and accounting learning management. So that was catering for Mumbai and across India.
Bill Gasiamis 14:48
And you say you’re in Mumbai, you live in Mumbai, but were you one hour and a half from a hospital? So were you in a distant area away from the hospital?
Sunny Kakaiya 15:00
No the problem was at the covid time the there was no ambulance available to get me to the hospital, so my friends, had to call multiple times to different ambulances, and that ambulance took time to come to my place, and I waited downstairs for a while, so that was also an issue.
Bill Gasiamis 15:39
So you guys had to make your own plans and your own trip to get to the hospital, because the ambulance may have taken too long to get there. It’s such an interesting thing because it’s common everywhere. It doesn’t matter who I’ve spoken to about their stroke, if it happened during covid, it was chaos. Doesn’t matter what the scenario was.
Waking Up After A Coma
Bill Gasiamis 16:04
Stroke patients weren’t able to get to hospital quickly enough, they weren’t able to be seen quickly enough, they weren’t able to access medical care, ambulances. It was such a difficult time for everybody, the whole world, but a lot of stroke survivors that I’ve interviewed have reported something very similar. So when you woke up after the four days, it’s Friday, when you woke up, what did you discover about yourself?
Sunny Kakaiya 16:36
When I woke up, I felt that my right side was missing. I was not able to feel my right side. I was not able to move my hand and my legs. My speech was completely gone. I was like (stuttering) I was being like that so that that was a period. But then I was in a hospital. I was for 15 days, I and then I was discharged, and I came home.
Bill Gasiamis 17:13
And when, when you were discharged, yeah, what was your left like? What was your body like? How were you able to experience your body? Was there deficits that you had to deal with?
Sunny Kakaiya 17:28
To be very frank, I was not thinking from that standpoint. I was in a fight mode with my brain that how can I improvise myself from this situation? So when I woke up, Doctor told me a doctor asked me about my memory. So he just parted a joke that you have taken a gold for your wife, but you are not taken a gold for your mom and just joke for but I said, No, that’s wrong.
Sunny Kakaiya 18:12
Actually, I bought a gold jewelry for my mom, and I specifically that I mentioned that gold jewelry, and after that, they asked me about your Do you remember your email ID? Do you remember your passwords? Do you remember your credit card passwords and everything? So I recollected everything, and I said, Yes, I remember everything. I have not forgotten all those stuff.
Bill Gasiamis 18:45
You didn’t give them your password details did you? They weren’t trying to scam you were they?
Sunny Kakaiya 18:50
No, they were just checking my memories, because these are the immediate thing which you do in day to day life, right? He asked me, did I remember my Facebook password? Then I remembered everything. I remembered all the conversation I had so it was just four days. Four days is still missing in my life. I meditate every day. I try to go in that four day period, but it is blank.
Bill Gasiamis 19:33
Did you so you had your memory that was still there, what about your physical body?
Stroke Survivor Story And The Physical Deficits
Sunny Kakaiya 19:40
My physical body. It was still. I was not able to make movement. I tried to get up by my own. My doctor and told me that, don’t try. Experimentation right now, because your back has been very much stiff from last 14, 15, days you are in a hospital and your back has completely frozen that will regain a little bit. So just allow some time to regain yourself, and you will be okay. But he told me that two years, you will not be getting up from the bed. So that was a trigger point.
Bill Gasiamis 20:34
Because you didn’t want to believe him.
Sunny Kakaiya 20:37
Yes, he told me, when I woke up and in the evening, he said to me in briefing that it will take two years to you get up from the bed. So that hit me to the core. I told him, Doctor, you are telling two years I will give you example that I will within one and a half, I will get up and I will try to walk I said to him. He said, that’s impossible, because what we have operated, and I know the medical conditions from medical terms, I don’t see that you will get up very soon. So that hit me, that really hit me to the core. He actually challenged me. You will not do it.
Bill Gasiamis 21:38
Did you prove him wrong?
Sunny Kakaiya 21:40
Yes. Within one month I actually started walking with the help of stick.
Bill Gasiamis 21:50
That is fantastic. So why do you think he was telling you that you’re not going to walk for two years? What do you think is going on in their mind? Are they trying to protect you? What are they trying to do?
Sunny Kakaiya 22:06
Yes, from the precautions perspective, they were very much that I should not get a stroke again in the midst of this, and I was really bulky at that time. That’s the reason he said this that.
Bill Gasiamis 22:29
You’re much heavier, how heavy were you?
Sunny Kakaiya 22:36
Around 120kg.
Bill Gasiamis 22:40
120 kg. And how tall are you?
Sunny Kakaiya 22:44
I’m 5.5
Losing Weight And Regaining Speech
Bill Gasiamis 22:46
Okay, so for somebody who’s five inches, yeah, 120 kilogram is very heavy, okay, and I just want to see what it is in pounds, because a lot of our listeners would be listening in pounds. It’s 264 pounds, and then how much weight have you lost? Have you lost some weight?
Sunny Kakaiya 23:14
Yes, over a period of time of six months, I have lost weight down to75kg.
Bill Gasiamis 23:27
So you’re down to 75kg from 120 kg, 75kg is 165 pounds. What a difference. Okay, so, and have you found that that has helped improve your recovery after the stroke? Has that made things easier for you?
Sunny Kakaiya 23:54
Yes, it has done good to me. I altered all my diets. I started consuming raw foods. I started consuming proteins, maximum proteins. So from that time, I very much I was on a diet perspective. It was planned, and from that way I have reduced over a period of time. And there were some exercise which is given to me. I do squats every day. Then I do, I do cycling, which was a part of regime physiotherapy, you should tell me.
Sunny Kakaiya 24:41
So there were lunges also I was to do, then bridges I need to create. So all the type of exercise I was performing at that time. So in that six months period, I was able to lose it and to be very frank, I regain my speech first. That was 100% within one month, I regained my speech. I went to another doctor, which is Ayurvedic medicines. He mentioned me, if you want to regain your speech, you have to utter a word in some particular format.
Sunny Kakaiya 25:30
So I will let you know what was that I was doing it. Aah, Ee, Ooh, so, this muscles will get stretched and it will get activated and that I have to do it continuously. So I was seated in a room, and I was continuously uttering that word, continuously. I was doing this, and that’s the reason I regain this 100% so I didn’t, get a stammer. I don’t have any issues right now. I can speak easily.
Bill Gasiamis 26:23
So you regained your speech, and then with your you got up within a month, you proved the doctor wrong. Yeah, but were you able to walk successfully on your own after the first month, or did you still need some support? Whether it’s some other things that you use to support you.
Bill Gasiamis 26:41
Just a quick break, and we’ll be right back with Sunny’s incredible journey. But first I wanted to take a moment to talk about something that’s been a big part of my own recovery journey. That’s my book, The unexpected Way That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 26:57
In it, I share my personal story and that of nine other stroke survivors who have turned their challenges into opportunities for growth. If you are looking for inspiration and guidance on your path to recovery, this book is for you. Get a copy on Amazon or visit recoveryafterstroke.com/book now, let’s get back to Sunny’s story and continue to be inspired.
Sunny Kakaiya 27:21
I needed, needed a stick to walk, and there was a wife and my brother beside me, because I need to make a balance between right inside and left hand side. I need to, again, teach my brain that you have to walk a walk this way. So I was a body of 37 year old. But I was again a kid of two, three years I was back to that zone. So doctor explained me very diligently.
Sunny Kakaiya 27:58
He said that right now you your one side is 37 year old, but your ones the one side is almost a kid. So you are to train that it from the kid perspective again. You have to grab things again. You need to try everything. What you have done in your kid, Kid time in your child time. So that’s the reason he, he taught. Told, taught me everything from that standpoint.
Bill Gasiamis 28:30
And what happened with work? Did you notify work? Did you spend some time away from work? How did that go?
Sunny Kakaiya 28:39
Yes, that’s something very interesting. I took a break of six months, but my director and my team helped me out financially. They gave me advanced salary of six months and to do my treatment, I’m really thankful to them at that time when they provided the advanced salary.
Sunny Kakaiya 29:14
There are many good thing has happened with me. At that time, I had taken a home loan, and I’ve taken the insurance also from that my home loan was completely waived off, around 40 lakhs. It was completely waived off. So all financial liabilities were reduced to the core, and slowly and steadily, my mental piece was there, okay, and I don’t have to worry much about my financials, because the aid was given to me.
Sunny Kakaiya 29:55
And within six months, , I started walking. But before that, I started my left hand to train to type, to write. So I started writing, 1 to 100 I started a to z, then I started with the words. Then I started eating from the left hand, everything from the left hand. I started typing. It was 17 words for a minute. I made it very true.
Sunny Kakaiya 30:26
So once now, if I type now, you will not feel it that I am work typing from one hand only. It is, it is normal. So I made equip myself that I have to work. From that standpoint, I have to do something. And I invested in that way. Other thing doctor told me that you want to challenge your brain. Right now, your brain is dormant. You have to challenge so what I did, I started pursuing LinkedIn courses.
Stroke Survivor Story: Taking Courses For Stroke Recovery
Sunny Kakaiya 31:00
I was doing LinkedIn courses, and I was getting some knowledge every day, because I was seated for six months, seated idle. So he said, Don’t get into idle mode. Start in utilizing because you are a busy person. You are giving time to your work, your family and everything, and right now your idle, the bad thought should not enter your head, that nothing will happen. Yeah, so I did 66 courses from LinkedIn in that period, and I regained my enthusiasm.
Bill Gasiamis 31:43
Was it difficult at the beginning to do those courses and to concentrate? How difficult was it? Tell me about that.
Sunny Kakaiya 31:52
So I started with one to three minutes of watching videos, and the video when I see it, I was not able to understand what is saying. Again I have to pause it, going back and again I do start the video and understand so slowly and steadily, I was starting understanding the of the video so that that was there, and then a half an hour, then one hour. So every one hour, I used to regain it again. I used to see the video to gain the knowledge.
Bill Gasiamis 32:33
So you had to repeat it multiple times.
Sunny Kakaiya 32:37
Yes, yes. And that has strained my brain very much.
Bill Gasiamis 32:41
And that strained your brain, was that fatiguing? Does that mean that you have to rest afterwards?
Sunny Kakaiya 32:48
Yes, but it has given me an advantage. After six months, I enrolled for the post-graduation course, and that was a challenge for me. I told them that I will be enrolling. So I told the university that I am a person with disability and I want to pursue this course, they examined me and told me, okay, you can do it.
Sunny Kakaiya 33:17
And then I joined Accelera and I completed HR transformation and people analytics. So I took the different subject altogether. I’m a finance guy, but I took a different subject so that I should, I understand it properly or not from that perspective. And I learned a new stream altogether.
Bill Gasiamis 33:43
What subject did you take?
Sunny Kakaiya 33:45
HR transformation, human resource transformation.
Bill Gasiamis 33:51
And did you take that because you had an interest in that, or did you take it simply just because you thought you wanted to try something else?
Sunny Kakaiya 34:00
No, I was part of learning management system as a consultant, so I thought I should pursue this course so it will give me an edge and more learnings and implement things in the business. So I did that.
Bill Gasiamis 34:20
It’s still relevant in your particular field, in the work that you do. It was very relevant and are you still doing that particular course, or have you completed that?
Sunny Kakaiya 34:37
I completed that within 10 months. It was 10 months course, and again, have enrolled for new course from I am Mumbai, advanced project management and analytics. So the next month it is going to get communicated and. And course will be completed. So the second challenge, I took it after I took a break of one one year, and then this happened in 2022 2023 I took a break, and again, I took a course in 2024 and started doing that.
Bill Gasiamis 35:22
So are you back at work? Have you been able to go back to work? Or has that not happened yet?
Sunny Kakaiya 35:31
I went to work within six months.
Bill Gasiamis 35:35
Okay, so you went back to work full time, the normal hours you’re doing before?
Sunny Kakaiya 35:43
Full time, yeah, full time.
Bill Gasiamis 35:46
And was it difficult getting back to work? How did you navigate that? Because Are you walking properly after six months, you still have some mobility issues. So how did you navigate?
Sunny Kakaiya 35:57
No, that was different. I was giving work from home setup so I don’t have to go to office very frequently in a month once, I used to visit the office. So that that leverage was given to me being a disabled person, and the projects also were aligned to me in that person that I don’t have to go to office every day. So that was very good. My mentors and my directors helped me in that way.
Bill Gasiamis 36:38
And then the days that you did have to go to the office. How did you navigate that? Was it easy to get to the office?
Sunny Kakaiya 36:46
Yeah, I get CAB services from the office. They used to take me, but I have to go down with the help of my wife or mom, and when I came back home, they used to fetch me up to the building. So that was there when, slowly and steadily, when I regain the confidence I asked that I will go by myself only because someday I have to take that step independently. I have to walk independently.
Sunny Kakaiya 37:21
I have to go outside meet friends, to take in the groceries, or something like that. I have to do myself. So I started those so first time, when I went, I went for a haircut independent. So for that reason, I got a confidence, okay, I can walk now by myself, but I was lurching on the right side, but it’s there.
Bill Gasiamis 37:52
It looks different, but it’s walking, I understand. So that must have been a big moment for you, that first moment of new independence again.
Sunny Kakaiya 38:05
Yes, yes, I literally cried. It is a moment of freedom. It is the guy who doesn’t sit at home for a moment also he’s been seated for from last year, last three years. It is very much painful, because I used to play cricket every weekend, Saturday and Sunday. I was very active. I used to go outside with the friends. I used to go out with my wife, Mom, I used to party also, so not a single day I was at home, and the life suddenly changed. Completely changed,
Bill Gasiamis 38:53
yeah, big adjustment, big adjustment from your physical adjustment, your mental adjustment, your your speech had to adjust. Then you also had to your work situation, and then also your after hours situation, how you spent your time on the weekends. Everything’s changing. It’s very dramatic, and it’s very sudden, and you’re not prepared for it. What were some of the things that you struggled with the most. What were the things that were the hardest for you to deal with?
Bill Gasiamis 39:30
I’ll ask that question again. You seem very motivated, very upbeat. You seem like the glass is always half full, not half empty. However, stroke is a very difficult time, so there must have been some things that made you upset, emotional, perhaps, or, you know, worry.
Sunny Kakaiya 39:56
The only thing I was worried about, people used to see me from a different angle altogether, in in a moment, six months back, I was something else. I was very much different person, and now they empathy me, sympathize with me. Okay, this has happened. You will do it good. You will so they thought I will be, I will not be doing or I will not be pursuing my dreams, which I had it, because now life has stopped.
Sunny Kakaiya 40:41
You in some sense, you don’t have to worry much, you relax and you you don’t think about anything. And they used to just give me a weird empathy that now it is stopped. You can’t do anything else. That is, there’s a that was a direct message given by many people to me, that this is this is it.
Sunny Kakaiya 41:07
Now you will be a disable, and you will be dependent on your wife and mom for everything, right from getting a bath or eating a food so that that actually hit me very much, that why people are thinking that I’m I have a same brain with the enhanced version of the brain. I have developed everything again. I started with the left hand. I regained all the moments which I need to do it. I used to eat it. I used to take a bath. Myself, not, not a single time. I means, after six months, I did everything by myself.
Bill Gasiamis 41:54
Yeah. So instead of encouraging you, they were saying you just have to give up. Now. You don’t have to worry about doing anything. You have to expect somebody else to look after you and help you out. And then that’s not encouraging at all. That’s really difficult.
The Impact Of Words On Stroke Recovery
Sunny Kakaiya 42:13
That means people don’t have a idea about this thing I think that everyone has some kind of disability. Even when I see everyone, there is some disability which are visible. There are some disability of there are not visible. So from that perspective, I can’t judge you from that day. You cannot do this. That is something. If you give me a challenge, I will definitely prove you wrong.
Bill Gasiamis 42:49
Yeah, and do you think they’re not doing it because they’re terrible people? They’re doing it because they don’t know any better, and they actually don’t know how to be encouraging. And maybe they’re again, maybe, like you said, they’re trying to protect you or something, it’s interesting, like, how people think about that.
Bill Gasiamis 43:12
I know maybe I was not exactly like that. I was kind of the opposite. When I was before stroke I would tell people who thought that they something was difficult, that they could do it. I used to encourage people ways to make sure that they knew that all you have to do is keep going and keep trying and all that type of thing.
Bill Gasiamis 43:35
But then I found that a lot of people don’t know how to deal with stroke survivors, they don’t know how to have a conversation about all of the changes that have occurred, all of the problems that that person has now, all of the physical challenges that they have. So they say the worst thing that they can possibly say, trying to make things better, but they say the worst thing, and they don’t realize the impact that it’s having on the other person.
Bill Gasiamis 44:04
And it’s a little bit it’s a little bit sad that that happens, but it’s really important for the stroke survivor to understand that it’s actually not about them, the person who is saying those words. It’s more about that person. It’s about that person’s thoughts and approach to life, and that approach to life doesn’t have to apply to the stroke survivor.
Bill Gasiamis 44:29
You can listen to that person just say whatever they want to say and let it go past to the wicket keeper and forget about it, and then just do your own thing, follow your own routine. Do your own encourage yourself. If you haven’t got the right type of encouragement, fight for your recovery. Don’t accept what other people who have not been in your shoes are going to say.
Sunny Kakaiya 44:54
Yeah. Absolutely, absolutely. I actually never thought of that. I was a different person altogether. So before that, before stroke, my personality was that I will be doing things later that was my notion.
Sunny Kakaiya 44:55
What kind of things would you be doing later?
Sunny Kakaiya 44:59
I will tell you that I was trying to pursue a course for a while. So I was thinking that I will do it, do it, do it. I will. But I never took an an admission, and I never went for it. But as soon as I got a stroke, and when I identified my strength, I felt my strength, the yes, this is sunny and sunny can do many things. From that standpoint, I started figuring out that this, you can get it and conquer it.
Sunny Kakaiya 46:00
There is nothing impossible in in this world which you cannot do it. So from that perspective, I was a changed person. So somewhere down the line, I feel the stroke happened to me, but I see it in a very positive way, then I’m a changed person. I’m literally a change person.
Bill Gasiamis 46:26
Do you feel like before you thought that life was long, and then after the stroke, perhaps, do you think, okay, life’s short, I better do something now. I better not wait until later, because later might not happen is that something that you relate to?
Sunny Kakaiya 46:47
No, I don’t see that way also that life is short. I have a desire to live. I have a desire to fulfill my dreams. This is just one incident in my life which taught me many things, let me know who are my nears and dears one. And it has filtered out people also and things also in my life. So I see it in that way, very much, and I’m very positive with that.
Bill Gasiamis 47:24
So it’s so it’s this really serious situation. You really unwell. You know you might not recover properly. You have all these concerns. Yet, when you have had a chance to reflect back three years now, three and a half years, you see that there’s been a lot of personal growth and a lot of personal development, and your yourself, but you’re an enhanced version of yourself, even though you have the deficits that you have.
Sunny Kakaiya 47:55
Yes, yes, definitely, when I say, if I have, I’ve grown, I’ve grown in this three to four years.
Bill Gasiamis 48:09
Like it sounds like it’s been an intense growing as well. So you’ve had a lot of growing that you’ve squeezed into those last three years.
Stroke Survivor Story: Dealing With Pseudobulbar Affect
Sunny Kakaiya 48:16
Correct. It’s very much intense because I started meditations, I started inquiring about that, why stroke happens? What was the reason? What stroke has happened to me? I had a side effect of pseudobulbar affect. It is a effect in the brain.
Speaker 1 48:36
Pseudo bulbar affect.
Sunny Kakaiya 48:47
So you don’t have a emotions control. So that is a part. So I’m talking to you right now, and if I if some thought pops up in my mind, which is emotional, I will start crying. And if I some jokes happen to me in my head. So whenever I go to my meeting or a client meeting or director meeting, I tell them that I’m a stroke patient, I might have a pseudobulbar affect. So if some thought pops up, I might cry, or I might laugh. So please don’t mind it.
Bill Gasiamis 49:25
In the wrong moment, we’re in the middle of a meeting and I’m laughing or crying. It’s not about you, it’s my stroke condition, doing it.
Sunny Kakaiya 49:32
Yes, I have mentioned that very specifically.
Bill Gasiamis 49:36
Yeah, it’s a very common thing, pseudobulbar affect. I had a similar situation, and every once in a while, it just catches up with me and I cry. So a little while ago, I was presenting about my book. So I’m not sure if you’ve heard about the book, but yeah, I did. I did. I wrote a book. It took four years, and it’s about all those things that you’ve spoken about, sonny, it’s about how it’s possible to go through the process of having tremendous personal growth during the recovery phase from stroke.
Bill Gasiamis 50:08
And the book is called The Unexpected Way That A Stroke Became The Best Thing That Happened. Now it became that it wasn’t the best thing that happened at the beginning, but it became that later on, because in the last for me, in the last 12 years, I have squeezed in so many things that the previous Bill doesn’t do. You know, the previous Bill doesn’t have a podcast, doesn’t write a book, it doesn’t talk public speaking, he doesn’t do meditation, he doesn’t learn about nutrition, you know, he’s smoking, he’s drinking, he’s doing all these things that are harmful to the body.
Bill Gasiamis 50:48
I’m talking with my family different, you know, I’m nicer to my kids, I’m more emotional. And I remembered all these things, and I remembered that I’ve had, I had pseudo Bulba affect. At the beginning, I was crying all the time for nothing, but, but it hasn’t happened for a long time. That emotional side, it settles down after 10 years, you know, eight years, nine years, it settles down a little bit, and it doesn’t happen so often.
Bill Gasiamis 51:17
So I went to the book launch to present about my book. There was about 40 people in the room, and the first moment I stood up and went to give the presentation, I cried. And then I had to stop. I had to calm down. Then I had to continue with the conversation. And then sure enough, a few minutes later, I cried again. I cried about four times during that presentation.
Bill Gasiamis 51:42
So it’s very interesting to observe myself, even after 12 years, going through that and being triggered by something completely unexpected. And I don’t know why. So in the room, I think what made it a little bit harder to get through in the room was a lot of my family and friends, the ones that really helped me, that were close to me, some of them I’ve written a little bit about in the book.
Bill Gasiamis 52:10
So it’s a very interesting thing to still experience pseudobulbar affect. But a lot of people who know me now, they know that that happens, and it’s not a big deal anymore, whereas before, when you’re 37 because I was 37 when I had the first bleed in my head, and you’ve never cried in public before, and nobody see you cry. They don’t know how to react. They don’t know what to say. But now they’re used to it, and they know that in a few minutes, I’ll be fine, and I’ll just keep going.
Sunny Kakaiya 52:42
Yeah, the same thing I when my dad passed away. I was strong as a stone. I didn’t cry, I didn’t cry, and I was after that. After this stroke, I realized that where the difference in me, that the sunny before and sunny now is very different altogether, but this, this is a much better version from that I see. I can see that, because when you cry, you let out your emotions, and it is good to be good to get out the from that emotions.
Sunny Kakaiya 53:34
I believe in that way, because when you don’t let out that emotions, it stays somewhere in your heart or brain, and it really impacts our health. It’s okay to cry. We there is a notion that men don’t cry. It’s not true.
Bill Gasiamis 53:56
Real men cry Sunny.
Sunny Kakaiya 53:59
Yeah, definitely, definitely.
Bill Gasiamis 54:02
So how about your family who lives with you now? What sort of living arrangements do you have?
Sunny Kakaiya 54:11
I stay with my mom and my wife, but this year, on February 29 my mom passed away. Yeah, that’s an emotional setback to me, because she has, again, raised me like a kid in this three years very much. So it’s a very emotional setback right now. I’m going through some counseling also, because I’m, I want to overcome from that, because I have some dreams to complete, which my mom has seen it.
Sunny Kakaiya 54:52
I have to do that, and I’m much capable from that point of view. So I’m I’m getting better day by day, but missing mom like anything, because she used to be here only 24 by seven, so see her. So that’s really missing for me and my wife. I have no kids yet, but we’ll think to plan in future.
Bill Gasiamis 55:23
What about the counseling side of it? How has that been helpful? Why is it important to do counseling for yourself? Why do you feel it’s really important?
Sunny Kakaiya 55:34
It is a fine tuning your brain and accepting a fact that the person is physically not with you, but from mentally, you should be very positive that from the astral plane, they will be with You only, and they will be giving you the blessings required, and you never think that you are alone from that perspective. So just one example that counsel told me.
Sunny Kakaiya 56:16
Do something which your mom used to do every day like a routine. Start performing those at what your mom used to do in the morning, evening or afternoon. You will not feel that she’s gone away. She is with you only. So that has helped me of very much I should, I should perform few activities which mom used to do. It, like watering the plants. And then she used to prepare a tea.
Sunny Kakaiya 56:58
I prepare a tea with that specific style than doing a rituals from the God that she used to do every day. So all those things I started performing, she used to go out and get something for me, my wife, so I have started doing that, also what she should bring for us. So I feel that she is with me, and that is a very positive one. It does. The physical form is not there, but she is with me mentally all the time.
Bill Gasiamis 57:41
Do you feel like the counseling has reminded you of some things that you already knew from, say, your your spiritual beliefs or your religious beliefs? Has it just reminded you about the fact that your mom is physically not there, but she’s living in your heart, you know, and she’s spiritually still with you, and she’s always going to be a part of you.
Sunny Kakaiya 58:07
Yes, yes. That has helped me a lot.
Bill Gasiamis 58:11
Yeah, your dad. How long ago did your dad pass?
Sunny Kakaiya 58:19
Seven years back.
Bill Gasiamis 58:22
So seven years ago, that was before the stroke, before you had an understanding of emotions and the type of level of what’s the word, like wisdom that you have now very different kind of experience. And did you find yourself being affected by your dad’s passing as much as you were affected by your mom’s passing? Or was it sort of had similarities, but very different? You experienced it differently?
Sunny Kakaiya 58:58
Yeah, I would say it was different when my dad passed away, I was I was more. I was like a person who will be leading the family, a man of the family. So from that point, I was being very strong from that way, and I have to lead the family. But when my mom passed away, I cried like two year old. I still cried like Kid, because it’s the it’s emotions.
Bill Gasiamis 59:41
It’s a very different Yeah, so what you’re saying is, with your dad, it’s kind of like the life, your life then took another turn, where not only did his passing happen, but also you, your responsibility increased, so you became the man of the house, so to speak. And. The head of the house, not the man the head of the house. And it’s a different kind of transition of relationships.
Plans For The Future
Bill Gasiamis 9:00:08
So it’s like your dad passed on something to you that you needed to accept and then move forward with. But as with your mum, it was a very more, it probably always was, a more emotional relationship with your mum, because she’s your mom. She gave birth to you, and, yeah, she nursed you, and she did all those things.
Bill Gasiamis 9:00:31
So it was a and as well that you had a stroke, and she cared for you in a deep way like she did when you were a baby. So very different kind of experience. Correct? Yep. Mm, well, it seems like you’re doing a great job at keeping their traditions alive and keeping you know their memory alive within you and your family. You’re doing a great job. Do you have siblings?
Sunny Kakaiya 9:01:01
I’m the only child.
Bill Gasiamis 9:01:03
Ok only child. So it’s you and your wife. And what are your thoughts about the next six months? What are you planning to do to achieve what’s on the to do list?
Sunny Kakaiya 9:01:19
So next six months, I saw your video of etanercept, so that has triggered my interest, so I contacted INR Stroke Recovery Center in it was Philadelphia, right? No, Florida, yeah, Tampa, Florida, yeah. I my wife’s brother is in Florida. So I contacted the center, and I asked everything in that format, they told me that around $16,000 the cost will be there, and sudden test before that will be performed.
Sunny Kakaiya 9:02:16
So right now, I am collecting those money, from that standpoint, to go over there, and there is a waiting period of five to six months down the line if I take a appointment now, my turn will be after five months or six Months. So I’m, I’m very positive at that once I have that money, I will, I’ll start raising it, and I will go over there and get completely healed. And that’s a positive.
Bill Gasiamis 9:02:56
Okay, so you’ve spoken to the clinic, they’ve told you you need to do some blood tests. You need to get some results done. Do you do all those before you arrive to Tampa, Florida? You don’t do that when you get there, correct?
Sunny Kakaiya 9:03:13
Right?
Bill Gasiamis 9:03:15
So you do all that stuff in India, you send them the results, they will determine whether you are eligible, yeah. And then, if you are eligible, then you can make the appointment, raise the money, and then, and then go, got it. Got it, yeah, yeah. Well, that’s good. I’m glad because, as so many people have heard about etern because of the interview that I did, and it’s really encouraging, because it offers hope.
Bill Gasiamis 9:03:44
I know it offers hope for some people. It doesn’t work. So it may not work for everybody, but if you can manage the money side of it, and you don’t mind going through all of that to get a result, maybe I think it’s worth it. I think it’s worth going after every possible improvement that you can get. And it’s great that you you found out on the podcast. I’m very happy about that.
Sunny Kakaiya 9:04:14
I would like to tell you one thing, I believe in the higher self. So when I saw your video at that time, I understood that God is giving me a sign that Sunny you have to do this and you will be completely fine, because I wish God I actually meditate. I told them that the day I got a stroke and I got like this, you only have a power to do that you can do in one day where you can make me proper, like a normal person. And after one week, I saw your video and when I saw the video, I cried I saw I told my wife to sit with me, and I saw it again, and we both cried. That was the emotion all together.
Bill Gasiamis 9:05:18
Wow, so I’m so happy about that.
Sunny Kakaiya 9:05:22
Thank you so much for that, doing that thing, because God gave me the message that you need to do it, and yes, you will get better.
Bill Gasiamis 9:05:33
I’m so glad about that. You know, we are, I’m in Australia. You’re the way. You’re all the way over there in India, as a cricket supporter, I never want India to beat Australia ever again in the cricket but as a human being and a fellow stroke survivor, My wish is that People find my videos and they have fantastic results, fantastic outcomes.
Bill Gasiamis 9:06:04
Do you know? And the fact that you found that in India and other people have found that in all these other parts of the world, it’s so encouraging to me as well. It’s what makes me keep doing these interviews, and it’s what makes me keep doing this. So it’s such a fantastic thing. And now what’s even better is that I’m in Australia. You’re in India, you’ve got family in Florida, exactly where you need them to be.
Bill Gasiamis 9:06:29
You can fly into Florida, stay with them for a few days, got it, visit your family, go and get the procedure done, and then, you know, you can really appreciate the whole experience. It’s just like from one end of the world to the other triangle, part of the triangle, and then to this other part of the triangle. It’s just crazy. How how small the world has become, and how, how fascinating it is that you and I, we can connect, and then you can end up somewhere else simply because of one video. It’s just ridiculous. I can’t get my head around it.
Sunny Kakaiya 9:07:04
Definitely. And if something gets possible, I’ll meet you in Australia.
Bill Gasiamis 9:07:10
Sunny. Come to Australia for sure. Come to the Australia for the for you know, one of the cricket matches, maybe the the.
Sunny Kakaiya 9:07:19
II want to visit MCG.
Bill Gasiamis 9:07:21
Yeah, the MCG, yeah, come to the MCG. I live near the MCG, not far from the MCG, so we’ll go there. We’ll, go and see the test match or something, you know, it’ll be fantastic.
Sunny Kakaiya 9:07:33
Yeah, surely, definitely, we have a same interest.
Bill Gasiamis 9:07:37
First stop, Florida once you work out Florida, then you can come to Australia. Also, I just wanted to ask you, like, What’s the hardest thing about stroke for you?
Sunny Kakaiya 9:07:54
I don’t see anything hard just from physical perspective? Muscles get fatigued very frequently. You have to do a regular massages, keep oiling, because it doesn’t get fatigue, yeah, to continuously do exercise. That’s, the one thing, if you miss what, two or three days, also you will start contracting your muscles, and you will feel that you will start the pain in that. So if I take a break, if I don’t do exercise for two or three days, it immediately gets impacted. I feel that.
Bill Gasiamis 9:08:52
So the hardest thing for you is the way your body feels physically?
Sunny Kakaiya 9:08:57
Yeah, okay, so at least I do a squats. If I do don’t do anything now, I will do 40 or 50 squats in a day. That will suffice for a day. So if I take a break, I will only do squats. I will not do anything else.
Bill Gasiamis 9:09:22
What’s something that stroke has taught you?
Sunny Kakaiya 9:09:28
Stroke has taken my ego, it made me humble. It showed me the reality of life, you’re living in the cloud. You see the reality and start enacting on the things you want to do. Don’t do it later, later, later. So. Those things are very much impactful.
Sunny Kakaiya 9:10:04
Gave me courage to do many things like, if I have to walk again, I would take a step without asking anyone else I need to do it, I be little bit hesitant to go out alone, but I would take a step that should go out and do it. I need to, again, play a cricket that’s a dream. So I always tried to grab a bat, but I’m not able to do it. But very soon, I know I will be fine. So very positive with that.
Lessons From The Stroke Survivor Story
Bill Gasiamis 9:10:47
So it’s given you a lot of new lessons. It sounds like you’ve gained a lot. Okay, there’s people listening now going through what you’re going through? Maybe they’ve just started their stroke recovery journey. Tell me about like, what kind of advice or encouragement would you like to give somebody who’s struggling at the moment with their recovery?
Sunny Kakaiya 9:11:15
Yes, I want to give advice to do a breathing exercise, a pranayama. And if you can do the pranayama for one hour or two hours, or maximum three hours, that is fantastic, because you are seated idle, you’re doing nothing, but if you do practice a breathing technique, you will actually activate the lost arm and the leg, and it will help in your spasticity and regain the neural networks again in the brain, so that actually helped me a lot of breathing technique.
Sunny Kakaiya 9:12:06
Right now, in recent times, I started doing Wim Hof breathing technique, which my friend introduced to me. So that is, like very much beneficial. You don’t get ill from that standpoint. So if you want to do this thing every day, you want to improve it. Start with five minutes, which you do, then you increase 10 minutes and get it till two hours or three hours. So you will see the difference in you within six months.
Sunny Kakaiya 9:12:45
And second thing, I would say, meditate. When you go inside the journey, you will find yourself, we’ve we’ve go outside and look some for everything, but real journey is inside. If you start seeing that, you will be, you will not be getting anywhere outside, or you distracted. You will not be distracted. So you have to see inside. That’s, that’s two thing I want to tell the world that breathing technique and the meditation is utmost. I currently one hour meditation, easy going every day I do it, nothing, no problem into into that.
Bill Gasiamis 9:13:40
I love what you said. That’s a such a profound statement, that the real journey is the internal journey, yep, yep, yep. That’s so true man, I practiced early on meditation and breathing very, very regularly, and it made a massive difference in my recovery. And what’s the best part about it is it doesn’t cost any extra. You don’t have to go anywhere to do it.
Bill Gasiamis 9:14:05
You can do it from your bed, you can do it from your kitchen, you can do it from your couch, you can do it from any location. And the benefits are so dramatic. The benefits are so good that it’s the biggest return what your time invested than anything else that you can do. And it’s still important to do all those other things, but meditation and breathing exercises give you such a return on your time invested that it’s just everybody 100% should be doing that.
Sunny Kakaiya 9:14:43
I believe in past life, also from a religious angle. So if we see of being a Hindu from that standpoint, we believe that we take 84 lakhs life before we take a human form. So currently, I’m learning something new into that, the past life regression therapy, in which I go into my past and see that why this has happened to me, stroke from that point of view. So that is something which is very focused. I’m still learning now. It is just one session done.
Bill Gasiamis 9:15:36
So when you say, why it has happened to you, what you mean is, what the purpose of stroke was?
Sunny Kakaiya 9:15:49
Correct. So in my past life, something, I would have wished it that I should be having this it has happened in this life. Maybe I’m just guessing it, but I’m figuring out so that theory is there that if we go and in the past and settle our karma, this thing will go away in this life. So I’m I’m just believing that that will happen. I’m very positive with that. Let’s see and life is to explore new things, so I’m exploring it right now.
Bill Gasiamis 9:16:32
I wish you all the best on your journey. Thank you so much for reaching out and being on the podcast. I really appreciate it. Thank you for sharing your lovely stories about how the podcast has been important for you. That’s really great to hear as well. And I look forward to hearing your update after you go to Florida. I would love to hear.
Sunny Kakaiya 9:16:57
Yeah, surely. And thank you so much, Bill. Lots of blessing to you, I would say. And you actually gave me the path from Gods will. So it’s, it’s very nice to connect with you, and it has been very good talking to you. It’s like a brother. Thank you so much.
Bill Gasiamis 9:17:23
Thank you, Sunny. I appreciate it. Well, that’s another episode wrapped up. I hope you found Sunny’s story inspiring, as I did. If you enjoyed this episode, please consider supporting the podcast by subscribing to our Patreon page at patreon.com/recoveryafterstroke.
Bill Gasiamis 9:17:43
Your support helps us keep bringing you these valuable stories and ensures that the podcast remains accessible to all those survivors. Remember to check out the show notes for details of our guests and links to their social media for full interview transcripts and more. If you haven’t left a review yet, please do it really helps others discover the show, and thanks so much for being here, and I’ll see you on the next episode.
Intro 9:18:13
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 information or purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 9:18:43
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 9:19:07
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 in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 9:19:32
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 Sunny’s Inspiring Stroke Survivor Story: A Journey of Recovery and Transformation appeared first on Recovery After Stroke.
1 hr 20 min
August 11, 2024Healing and Hope: Jenna Muscat’s Ischemic Stroke Recovery
Cerebral Venous Sinus Thrombosis: Symptoms and Causes
Cerebral venous sinus thrombosis (CVST) is a rare but serious condition characterized by the formation of a blood clot in the dural venous sinuses, which drain blood from the brain. Understanding the symptoms and causes of CVST is crucial for timely diagnosis and treatment.
Understanding Cerebral Venous Sinus Thrombosis
Cerebral venous sinus thrombosis occurs when a blood clot forms in the venous sinuses, preventing blood from draining out of the brain. This blockage can cause blood cells to break and leak into brain tissues, leading to hemorrhage. CVST can affect adults and children alike, with varying symptoms and causes.
Symptoms of Cerebral Venous Sinus Thrombosis
Headaches
Headaches are the most common symptom of CVST, occurring in 90% of cases. These headaches are often severe and persistent, differing from typical migraines or tension headaches.
Neurological Symptoms
Depending on the location and size of the clot, CVST can lead to various neurological symptoms:
Seizures: Sudden, uncontrollable electrical disturbances in the brain can occur, presenting as convulsions or other types of seizures.
Focal Neurological Deficits: These may include weakness, numbness, or vision problems, often affecting one side of the body.
Altered Mental Status: Patients may experience confusion, lethargy, or coma in severe cases.
Other Symptoms
Other less common symptoms include:
Nausea and Vomiting: Often associated with increased intracranial pressure.
Papilledema: Swelling of the optic disc, visible during an eye examination.
Difficulty Speaking or Understanding Speech: This can occur if the clot affects the areas of the brain responsible for language.
Causes of Cerebral Venous Sinus Thrombosis
Hypercoagulable States
Several conditions can increase the tendency for blood to clot, leading to CVST:
Genetic Disorders: Conditions such as Factor V Leiden mutation and prothrombin gene mutation.
Acquired Conditions: Antiphospholipid syndrome, a disorder in which the immune system mistakenly attacks normal proteins in the blood.
Infections
Certain infections can cause inflammation of the veins, leading to clot formation:
Sinusitis: An infection of the sinus cavities.
Meningitis: An infection of the membranes covering the brain and spinal cord.
Hormonal Factors
Hormonal changes can influence blood clotting:
Pregnancy and Postpartum Period: The body’s clotting mechanism is naturally increased during and after pregnancy.
Oral Contraceptives and Hormone Replacement Therapy: These can increase the risk of clot formation.
Medical Conditions
Certain medical conditions are associated with a higher risk of CVST:
Cancer: Particularly hematological malignancies.
Inflammatory Bowel Disease: Conditions like Crohn’s disease and ulcerative colitis.
Trauma and Surgery
Trauma to the head or neurosurgical procedures can also lead to CVST due to direct injury to the veins or secondary to inflammation and increased intracranial pressure.
Diagnosis and Treatment
Diagnostic Methods
Accurate diagnosis of CVST involves a combination of clinical evaluation and imaging studies:
Magnetic Resonance Imaging (MRI): Often combined with Magnetic Resonance Venography (MRV) to visualize blood flow in the brain’s veins.
Computed Tomography (CT) Scan: Useful in identifying brain hemorrhages and other abnormalities.
Treatment Options
Treatment aims to stop the clot from growing, reduce swelling, and prevent complications:
Anticoagulant Therapy: Heparin or warfarin to prevent further clotting.
Thrombolytic Therapy: Medications to dissolve clots in severe cases.
Symptomatic Treatment: Managing seizures, headaches, and other symptoms.
Surgical Intervention: Rarely, surgery may be needed to remove the clot or relieve pressure on the brain.
Prognosis and Long-term Management
Recovery and Follow-up
The prognosis for CVST varies depending on the size and location of the clot and the underlying cause. Many patients recover fully with appropriate treatment, but some may experience long-term neurological deficits. Regular follow-up is essential to monitor for recurrence and manage any ongoing symptoms.
Preventive Measures
Preventive measures include:
Managing Risk Factors: Controlling conditions like hypertension, diabetes, and hyperlipidemia.
Lifestyle Modifications: Regular exercise, a healthy diet, and avoiding smoking and excessive alcohol consumption.
Conclusion
Cerebral venous sinus thrombosis is a complex condition with a range of symptoms and causes. Early recognition and treatment are crucial to improving outcomes. Awareness of the risk factors and preventive measures can help in reducing the incidence of this potentially life-threatening condition.
Episode 316 Interview With Jenna Muscat
Jenna shares her personal journey of having an ischemic stroke due to Cerebral Venous Sinus Thrombosis at a young age.
Instagram
TikTok
Highlights:
00:00 Recovery After Stroke Patreon Page
02:05 Introduction
03:38 The Early Symptoms of Cerebral Venous Sinus Thrombosis
08:17 Birth Control Pill As A Possible Cause Of The Stroke
11:59 Prematurely Discharged From The Hospital
16:19 Dealing With The Emotional Recovery
27:01 Four Years After The Stroke
33:23 Stroke Being The Worst And The Best Thing That Happened
40:00 Moving Forward After A Stroke
47:13 Taking Chances
53:49 Making A Difference In The World Of Stroke Recovery
59:07 The Hardest Thing About Stroke
1:03:23 The Lessons From The Stroke
1:09:23 Finding A Therapist
Transcript:
Recovery After Stroke Patreon Page
Bill Gasiamis 0:00
Hello everyone. I thought it would be a good time to let you know that recently, I set up a Patreon page. The purpose was to get some support to help cover some of the costs of the recovery after stroke podcast. Since 2017 I’ve been covering all the costs to keep this podcast running, but now I’m reaching out to our amazing community for a little help.
Bill Gasiamis 0:24
By subscribing to our Patreon, you’re directly supporting the ongoing production of the podcast. Your contribution helps cover essential costs related to recording, editing and hosting, ensuring the podcast remains available to every stroke survivor who needs it.
Bill Gasiamis 0:43
Your support will help us continue to transcribe each episode into subtitles for the YouTube version of the show, ensuring accessibility for listeners with hearing challenges. Our dedicated virtual assistant in the Philippines spends around four hours transcribing each episode and handles various behind-the-scenes tasks that keep the podcast running smoothly.
Bill Gasiamis 1:08
Your contribution will also cover the ongoing costs of monthly website hosting regular maintenance and storage for new episodes. This ensures that the podcast continues to operate smoothly and remains accessible to everyone in the community, as well as helping me with my goal to build the largest database of interviews with stroke survivors in the world, so no stroke survivor ever has to think that they are alone on the recovery journey.
Bill Gasiamis 1:38
Membership starts at $5 a month, and you can join our Patreon community by going to www.patreon.com/recoveryafterstroke today and help us continue providing valuable content for stroke survivors and their families. Your support makes a world of difference. Thank you for your generosity.
Introduction – Cerebral Venous Sinus Thrombosis

Bill Gasiamis 2:05
This is episode 316 of the recovery after stroke podcast today, we have an extraordinary story of resilience and transformation as we chat with Jenna Muscat. At just 22 years old. Jenna experienced an ischemic stroke due to a cerebral venous sinus thrombosis, a life-altering event that reshaped her future.
Bill Gasiamis 2:30
Join us as Jenna shares her remarkable journey of overcoming this challenge, navigating the complexities of stroke recovery and addressing mental health struggles, from facing intense fear and anxiety to finding strength in vulnerability and advocacy.
Bill Gasiamis 2:46
Jenna’s story is a testament to the power of perseverance and community support. Let’s dive into Jenna’s inspiring recovery story and learn how she continues to thrive and inspire others in their path to stroke recovery. Jenna Muscat, welcome to the podcast.
Jenna Muscat 3:05
Thank you. Thanks for having me.
Bill Gasiamis 3:08
My pleasure. Thanks for being here. Tell me a little bit about what happened to you.
Jenna Muscat 3:12
So I was 24 when I had my stroke. I’m 28 now, so it was almost four years ago. It’ll be four years in late August, early September. But essentially, I was just a very happy 24-year-old. I was a month away from graduating with my master’s from Pepperdine in behavioral psychology, I had a great job, I was just doing really well in life, and everything was going fine for me.
The Early Symptoms of Cerebral Venous Sinus Thrombosis

Jenna Muscat 3:38
And then one day I woke up with a headache. And I kind of got headaches a lot, so it wasn’t out of the ordinary for me, but this headache was very different, and it didn’t respond to, you know, any kind of medication. I went to the emergency room. They gave me a pain shot, sent me home, took the edge off, just the slightest bit, went back the next day, and the headaches just increasing during this time.
Jenna Muscat 4:04
They do the same thing, give me a pain shot, send me home, I sleep, I wake up, same thing, but now I have just extreme nausea, just throwing absolutely everything up. So I go back to the emergency room, and they do a braid scan on me, just a CT scan, no scans of contrast or anything. It comes back fine. They say, like, look, at this point, you just have a migraine and you’re really anxious. So here is some valium, and they send me home. And then some other really scary symptoms started showing up, just like a loss of balance. I couldn’t really walk.
Jenna Muscat 4:48
My hearing started to go out, I had really bad tinnitus in my ears, my vision started to go out. My peripheral vision was almost completely gone, and I would move my head in any position, if I would stand up, sit down. It would go completely dark for, you know, 10 seconds.
Jenna Muscat 5:05
I couldn’t figure out how to do things such as open doors. I would go up to a door and feel all over it and have no idea what to do to open it. But I couldn’t even connect the dots in my mind that I didn’t know what to do. So at this point, my dad said, I’m taking you back to the hospital. And I was in my room at the time, and he said, wait here, I’m going to go get my keys and we’ll take you to the hospital.
Jenna Muscat 5:30
And during that time, I guess I thought I could go to the bathroom by myself. And I don’t really know what happened after that, but I woke up on the floor in the bathroom, and my dad was like, trying to shake me to get me to wake up. So, not really sure what happened there. But after that, took me to the emergency room, they still didn’t really want to admit me honestly, because I had just had a clean brain scan the night before.
Jenna Muscat 5:57
And they were pretty certain at this point that it was anxiety. Because I will say, like at this point, my anxiety was super bad with the symptoms I was having, and everyone telling me I was fine, but they did agree to admit me, and then the next morning, they ran just a whole battery of tests. The first scan they did was a CTA angiogram with contrast, and about five minutes after that scan was done, I had multiple doctors rush into my room, and I knew as soon as that happened, like something’s not right.
Jenna Muscat 6:34
And the doctor that came in looked at me, and she goes, are you on birth control pills? And I was really confused. I was like, yeah, why? Like, they were actually sitting on my hospital table because I had been so sick the days before, I had forgotten to take them. And she goes, you can never take them again in your life. And I was just so confused. I had no idea what she was talking about.
Jenna Muscat 6:54
And I remember looking at my dad, my dad, looking at me, us looking at her. She was like, your brain is full of massive blood clots, you’re having a stroke, she said, the scan of your head also picked up the top parts of your lungs. And you’re also having a pulmonary embolism. They said, we need to get you to the ICU right now to start treatment, and from there, it was just kind of a blur.
Jenna Muscat 7:18
I was in the hospital for about a week on anti-coagulation treatment, IV Heparin, trying to break up some of the clot in my brain. And I had to go through a bunch of blood tests before I could transition to oral blood thinners and go home. But it was a lot. And then when I was in the hospital, they did an additional scan of my entire lungs and found an additional pulmonary embolism. But, yeah, that’s kind of my stroke and what happened to me.
Bill Gasiamis 7:51
Oh my gosh, yeah, that’s intense. I’m just listening to it and thinking, surely they checked her, surely they did this, surely they did that. But what they did is they judged you on your external appearance. They said she’s young, she looks fine, she doesn’t have slurring, she doesn’t have a droopy face, you know, so it’s probably nothing.
Birth Control Pill As A Possible Cause Of Cerebral Venous Sinus Thrombosis
Jenna Muscat 8:16
Yeah, and I think that’s been like, kind of the hardest part for me is just, I’ll never be able to wrap my head around like how me going to the emergency room with these symptoms and then having my medication list knowing I’m on hormonal birth control pills, how no one thought maybe we should check to make sure it’s not a stroke.
Bill Gasiamis 8:38
I think one of the reasons is because of the hormonal birth control pill is very rarely connected to stroke. So on the back of the pack, it says all the different side effects, and you know, stroke is one of them, but nobody really has that conversation and actually talks about it. It’s so commonly used by so many women that nobody really thinks about it like that. And most women haven’t had a stroke.
Jenna Muscat 9:06
Yeah, and if you do, you know, know about it, you never think it’s going to happen to you. Every pill has a side effect, anywhere from rash to like, of course, that’s not going to happen to you, but it’s going to happen to someone, and it could be you, and it was me.
Bill Gasiamis 9:19
I’ve been doing these interviews now for about 312 episodes, something like that. And the amount of women that I’ve spoken to who have had a stroke, who were around your age, and say, up until their mid 30s, because, well, nobody said it was because of the birth control pill, but who were on a birth control pill.
Jenna Muscat 9:41
Yeah you can’t definitively say so I’ve learned this. You can’t definitively say because there’s obviously no test to confirm it. It’s just a process of elimination from things you can test for, which I think also makes people downplay the role of birth control because there is no test to confirm it.
Jenna Muscat 9:59
So, you know, people will speculate, well, you can’t prove that, but you know, I had every blood test in the book trying to identify why this happened to me, from, you know, genetic factors to autoimmune disorders to cancer. I had every test in the book, none of it was flagged, like my only risk factor was hormonal birth control pills. But I think because you can’t put a definitive, you know, diagnosis on that, like people just downplay it, and no one takes it seriously.
Bill Gasiamis 10:31
And also, what they don’t do is, when they prescribe the birth control pill, is they don’t do genetic testing to see if the person has a blood clotting disorder, and therefore, if that person does and they’re on birth control pill, the risk of having clots occur because of the fact that they are both genetically predispositioned to it, and also then on the birth control pill, then the chances of having blood clots goes through the roof. So did you have an underlying physical reason as to the potential for blood clots?
Jenna Muscat 11:12
When I had my stroke? No, not to my knowledge, I did not have any kind of underlying clotting disorders. After my stroke, I had a whole hematology panel done by a hematologist testing for, you know, just like what we’re talking about, any kind of genetic factor, anything about me that would make me more prone to blood clotting, and all of those tests came back normal. So I’m just one of the very unlucky people.
Bill Gasiamis 11:36
Yeah, indeed. How long did you spend in the hospital?
Jenna Muscat 11:41
I was in the hospital in the ICU for about a week, but the onset of my symptoms from when they started to when I got in the hospital and they finally agreed to admit me was about a week as well.
Bill Gasiamis 11:55
And then you went straight home, or did you have to deal with some deficits that you had to overcome?
Prematurely Discharged From The Hospital

Jenna Muscat 12:00
I went straight home, I will say I was very lucky in my physical recovery from my stroke. There really was no lasting physical or cognitive impairments, which I am eternally grateful for, obviously. So after I was able to transition to Eliquis, which is a blood thinner in pill form, I was able to go home, and I kind of thought that once they sent me home, that meant that I was fine and I wasn’t fine.
Jenna Muscat 12:30
And I think that’s kind of where my mental battles started, is they sent me home, and I was still in an extraordinary amount of pain. I still had the same symptoms I had when I was in the hospital, because at the end of the day, I still had something in my brain that wasn’t supposed to be there, that clot didn’t just magically go away, it was still there, so all my symptoms were also still there, and it was honestly terrifying.
Bill Gasiamis 12:53
So you’re thinking, this is how I felt when I went to hospital. Now I’m at home, and I’m feeling the same, and it’s supposedly everything’s going to be better, and I also got these plots within me, and you’re probably wondering, what does that mean for my future?
Jenna Muscat 13:11
Yeah, I kind of felt like I was made of glass. I just thought, you know, at any point, I was just going to drop dead, and it was like this massive weight on me that I’ll never be able to put into words. But throughout my whole recovery, and, you know, honestly, almost four years later, even now, I still struggle with just feeling like the sky is about to fall on top of me, because that’s what happened before.
Intro 13:38
If you’ve had a stroke and you’re in recovery, you’ll know what a scary and confusing time it can be. You’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse? Doctors will explain things, but obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 14:02
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying and head to recoveryafterstroke.com. Where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke.
Intro 14:22
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com, and download the guide. It’s free.
Jenna Muscat 14:40
And everyone told me I was fine, and every medical test said I was fine, and all of those people and tests were wrong. So now it’s like, I don’t trust myself, I don’t trust my body, and I certainly don’t trust doctors.
Bill Gasiamis 14:55
Yeah, that’s a shame. Your education and the particular field that you were studying in, was it psychology?
Jenna Muscat 15:10
Behavioral psychology.
Bill Gasiamis 15:13
So now you kind of have an insight, or you have an understanding of kind of how people go about behaving, making decisions, all that kind of stuff. Are you using what you learned in the past to kind of get your head around, to wrap your head around all the decisions that were made at the hospital? Are you overthinking that part of it? Where are you at with that whole experience?
Jenna Muscat 15:36
So basically, my job in behavioral psychology is I kind of decide for why people do what they do, because there’s always a reason or a function for our behavior, and it’ll always haunt me looking back like, what is it about me that made these doctors not care about my life? What did I say? What did I look like what was it that made it not worth it to them? And it’s definitely something that’s haunted me and that I’ve thought on a lot, you know, over these past four years. And you’d think that those feelings and, you know, wonders in your head would eventually subside, but they don’t.
Dealing With Emotional Recovery After Cerebral Venous Sinus Thrombosis
Bill Gasiamis 16:20
Yeah, it’s not you, so it sounds like you’ve taken it personally.
Jenna Muscat 16:27
You know, at first I did, I will say, like, when my stroke first happened to me, I didn’t know anything about strokes. I didn’t know anything. And so I thought that, you know, in the way I was diagnosed, the way I was kind of treated initially in the hospital, I thought I had a really bad experience, so I was like, you know, it’s fine. These things happen, like I just had a bad experience, and that’s okay I can take that and I’ll be fine.
Jenna Muscat 16:51
But after I started recovering, I joined support groups, I started advocating on social media and connecting with other survivors, and very quickly, I learned that I didn’t have a bad experience. I had a very normal experience, especially for young women. And I think I kind of thought there would be some sort of closure in that, like, I’m not the only one that dealt with it, but it almost was worse, because I was like, this is just how it is like, how do we fix this?
Jenna Muscat 17:21
So if this happened to me and all of these other people, it’s gonna keep happening, and not everyone’s gonna have as good of an outcome as I did, and it just honestly was very heavy because I didn’t know what to do to fix it. It’s like when it’s a problem that’s this big and this systematic, you know, it’s the systematic failure of our healthcare system. How, how do you fix a problem that big, like, I’m one person whose voice didn’t matter when I was in the hospital, you know, how do I fix it?
Bill Gasiamis 17:55
And you’d think that your voice would matter when you go into hospital, say, I’m feeling this, and I’m feeling that, and I’m experiencing this.
Jenna Muscat 18:00
When you go to the hospital, you expect the doctors to do their job. You expect them to take you seriously. And I felt like because I was a young woman complaining of head pain that had a seemingly clear CT scan, she must be fine. She must just be anxious. And I was brushed aside, and that sucked, honestly.
Bill Gasiamis 18:31
Big time, your experience is not uncommon. For women, probably, my experience as far as a man that goes right. I can only speak about that, but also anecdotally, what people have told me who I’ve interviewed, it’s been a cross section of the community, be it males, females, white, black, Asian, doesn’t matter. Like there’s been lots of people who I’ve interviewed who said I went to the hospital, I told them what I was feeling, and they said you’ve got a migraine.
Bill Gasiamis 18:59
Or at your age, they said you were drunk, or you’re taking some drugs. You know, what drugs have you taken that kind of stuff, and people were made to wait, etc. To be as lucky to be able to go back time and time again. You know, that should have been a red flag for them. But I think one of the challenges is that at the medical systems, all of them, doesn’t matter who I speak to, doesn’t matter what country they’re in, are all under pressure.
Bill Gasiamis 19:29
They’re all lacking funding, they’re all dealing with too many people, they’re all overworked. You know, they’re all stressed. They all got those things, and what they would prefer is to have one less patient. And if you know, they see X amount of patients that come in that fit your description, that have had a headache, and it kind of wasn’t nothing, and they managed to give you some painkillers and send you away and got you off their books, so to speak.
Bill Gasiamis 19:55
That made their work day a little bit easier. And it’s not personal obviously, and it’s probably not malpractice or anything like that, but it is probably an attempt to decrease their workload and just deal with supposedly, “people who are worse off” than you or need more help than you, right? So then it’s about patient advocacy, right?
Bill Gasiamis 20:26
It’s, how does a patient go into the hospital and know that they have to advocate for themselves? So you know, you’re in your 20s, you’ve never had a stroke before, you’ve never been unwell before, and how are you possibly going to know that what you need to do is go back and insist, no, there’s something that is wrong with me.
Jenna Muscat 20:46
I think that’s my biggest thing now, is, had I had the knowledge then that I have now about strokes and about, you know, the risk of birth controls, it wouldn’t have changed anything. I would have still gone on birth control. Everything has side effects, but I would have been able to better advocate for myself and get myself treatment faster. I would have known the things to say, I would have known the test to ask for.
Jenna Muscat 21:08
You assume that the doctors will do that for you. But, you know, obviously that’s not always the case, and so my biggest thing is just increasing awareness and helping educate people that that this can happen. You know, none of the advocacy work I do is to stray people away from birth control pills. I think it’s a great resource for so many women, but I think you know, knowledge is power, and it can save your life, and I want everyone else to have the knowledge that I didn’t have when it happened to me, because it would have really changed things.
Bill Gasiamis 21:38
Do you have other people that you know in your circle that are on the birth control pill? And have you guys had a chat about that, or has it not been appropriate?
Jenna Muscat 21:52
I mean, I talk with anyone about my experience, and I will never, you know, still to this day, I don’t think birth control is evil. I think it’s a great resource for so many women. I think there needs to be more conversations around the risks and the side effects. Think there needs to be more education on that. And that’s my biggest thing. I never want to tell people it’s bad or it’s wrong, but I want to tell people that this can happen to you.
Jenna Muscat 22:14
This is how to recognize it, and this is what you do about it. So that’s my biggest thing. And I think that’s a big misconception people have, is that, you know, I just think it’s this evil, horrible thing that everyone should get off of. And that’s very much not true. I just wish that everyone had the education that I wish I had back then, so that everyone can make the decisions that are right for them.
Bill Gasiamis 22:37
And also, I think it’s important if somebody’s going to go down that path is that they understand that perhaps they need to do some testing to see whether or not they have a blood clotting disorder to ensure that they are.
Jenna Muscat 22:53
Most of the you know, people I’ve connected with that have had strokes. A lot of them have had these underlying genetic conditions, or, you know, autoimmune disorders that increase their risk of clotting, and they didn’t know it till something bad happened. So I’m like, Okay, well, do we need to test everyone for these disorders, you know, before we put them on hormonal birth control pills. Like, maybe, let’s have a conversation about that. Because even though that wasn’t the case for me, that’s the case for a lot of people.
Bill Gasiamis 23:22
Yeah, I think it needs to be part of the “Here’s the prescription, and also here’s some information about other conditions that you need to be aware of, that you need to take some action on. Perhaps you need to investigate the possibility that you need to learn about yourself, your body, and what is happening in your body before you go down the path of adding a complication to it while you’re trying to do this good thing, you’re trying to be proactive and prevent unnecessary or unwanted pregnancy.
Bill Gasiamis 24:04
So you want to do the right thing, you’re taking the right steps, you’re doing all the right things. And then yet, I feel like missing a key bit of information for somebody who’s about doing the right thing, who’s trying to make the right choice. And that’s really the part that frustrates me when I speak to women who’ve had a stroke and they were in the birth control pill, and there’s also that whole, “we don’t really think it was that, and it probably wasn’t that”.
Bill Gasiamis 24:39
And it’s a real challenging scenario like I find it very difficult to hear. Just a quick break, and we’ll be right back to the interview. Now just imagine a life where the impossible becomes possible, where the challenges of stroke recovery transform into a story of triumph and growth. Well, this is my story, and I’ve captured it all in my new book, The Unexpected Way That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 25:07
I know firsthand the emotional roller coaster of stroke recovery, the fear, the uncertainty, the frustration. I’ve been there and through my journey, I discovered that a stroke, while devastating, could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a road map to not only navigate your recovery, but to thrive in ways you never thought possible.
Bill Gasiamis 25:38
Are you ready to turn your challenges into opportunities? To find strength in your struggles? The unexpected way that a stroke became the best thing that happened is more than a book. It’s your companion on this journey, a source of inspiration and a testament to the power of the human spirit. To get your copy from Amazon today, follow the links in the YouTube description, or visit recoveryafterstroke.com/book and embark on a transformative journey towards a brighter, more empowered future, because the best chapters of your life are yet to be written.
Jenna Muscat 26:18
It is. And I mean, even you know, I dealt with that. I went to a cardiologist maybe six months after my stroke to, you know, dive a bit deeper into my pulmonary embolisms I had, and he was very adamant, like, I just don’t believe this was cause for birth control pills. And, you know, he had all my medical tests and it was, you know, the proof was there. Like, I have nothing else going on, but he still just would not admit that that was the issue.
Jenna Muscat 26:18
And that also was hard for me, because it was like, well, is there something else wrong with me? You know, I’m already dealing with this insane amount of health anxiety, and now I have this other doctor in my ear telling me again, not to trust these other tests, that there’s probably something else going on. And it’s hard.
Four Years After The Cerebral Venous Sinus Thrombosis
Bill Gasiamis 27:01
Yeah, you’re four years out. How is your health now? Like, where are you actually at with your health? Is there any more blood clots in there? Have they been gone? Are they gone? Where are you at?
Jenna Muscat 27:15
So I was getting regular brain scans for about a year after my stroke every couple months to check in on the status of the clots in my head. From the beginning, my neurologist told me that there’s a high likelihood they’re never fully going away, going to go away, because he said what happens is blood clots will calcify, and basically your body will form new blood vessels around it, and at that point, it’s pretty clinically insignificant, but they’re still there.
Jenna Muscat 27:40
And that’s what ended up happening for me, is my clots did calcify in my brain. Some of them did go away, but my main one is still there. And about a year after my stroke, I had already gotten off blood thinners, because at that point it was clear it wasn’t going to break it up any farther, and the risk of staying on them outweighed the risk of coming off, especially since I was found to have no other clotting conditions, I was given the green light to come off blood thinners, being that I was no longer on hormonal birth control pills, obviously.
Jenna Muscat 28:15
But I will say, you know, my mental health really took a big hit with all of this, and my health anxiety was crippling and paralyzing and horrible, and I thought every time I got one of my brain scans that it was going to tell me if I was going to live or die. There was absolutely no relief that came with good news, because I didn’t believe it, because my scans were wrong the first time.
Jenna Muscat 28:39
So I, you know, made the decision with my doctor to forego any additional scans unless something you know changed, if I had new symptoms come up. So per my last scan, my clots still there, I have new blood vessels around it with great blood flow. So that’s good. Besides that, my health is pretty good. I will say the kind of health anxiety from this and my just aversion to doctors and hospitals has made me skip a lot of doctors appointments.
Jenna Muscat 29:10
And things that I should be keeping up with to check on my health. So that’s something I’m still really working through. My mental health is an ongoing battle. You know, the PTSD from a stroke is very, very real. And I don’t think enough people, talk about it.
Bill Gasiamis 29:31
No, they certainly do not. It’s the thing about stroke, like it’s the gift that keeps on giving. It’s just so ongoing. It’s not funny. You know, I’m 12 years out, and a few months ago I did my book launch, about six weeks ago, I did my book launch, and I had this speech prepared, and this presentation and everything, I got up there, literally within about three minutes, I was crying in front of all the people who I was doing this presentation to.
Bill Gasiamis 30:02
Just the discussion of the process, the thing that I went through at the very beginning, 12 years ago, triggered this emotion that I thought kind of was not really there, not in that way, you know, like not that raw, and I couldn’t control it. And anyway, I took a few deep breaths, and I kept going. And then, sure enough, you know, few minutes in further down into the presentation, you know, it happened again, and it happened again.
Bill Gasiamis 30:34
And I just couldn’t understand, no, I can understand it, but I I thought that I had moved beyond that phase of my mental health recovery, and I have a long way, like I’ve come a long way, like heaps, but still, it could be the right day in the right place and the right audience, and it’s just sets me off. And then, I’m wondering, like how did I get here? And then, and then I realized, Okay, well, I’ve got more work to do. There’s way more work to do.
Jenna Muscat 31:16
Yeah, I think I’ve learned at this point that, you know, I always told myself when I was recovering from my stroke, I was like, if I can just get, like, the green light for the doctor to come off blood thinners, if I can just get a good brain scan. Like, I kept telling myself these milestones, like, if I can do this, then I’ll feel better. And then one by one, I hit all those milestones and I had never felt worse.
Jenna Muscat 31:36
And I think it was that realization like, this is never going to go away, and this is just going to be a part of me, and I have to accept that and learn, how am I going to take this thing that has seemingly like destroyed my life and broken me down, and how am I going to make it the thing that makes me stronger? And yeah, it’s hard.
Bill Gasiamis 32:01
Being so young. And I’m only saying this because I remember how thick I was when I was around 21, 22 years old. Like being so young and having just sort of finished school and all the things that you do when you’re coming into adulthood, do you feel like you are under equipped to deal with that kind of a situation just because of your lack of life experience?
Jenna Muscat 32:30
I don’t know that. Under equipped is what I would say, unprepared. I think when you’re young, you feel invincible. I know for me, like I know bad things happen. I’ve seen them happen to people around me. You never think they’re going to happen to you, and then it does, and you very quickly realize that life is just incredibly unpredictable and like the most heartbreaking way, like you can be fine one second and got the neck gone the next.
Jenna Muscat 32:57
Like I remember when I lost consciousness in my bathroom before my dad found me like, I just remember everything going black, like I so just, like it was just I was there, and then nothing. And that could have been where that could have been where it ended. And I think facing death so young is, I think it’s a good and a bad thing. It’s a situation that I think altered my life in such a, you know, such a massive way.
Stroke Being The Worst And The Best Thing That Happened

Jenna Muscat 33:23
I’ll always say, like, my stroke is the worst thing that ever happened to me, and it’s the best. I wouldn’t take it back. It was hell. But I think I’m a better person because of it. I think I live my life in a much better way now. It affects every decision I make now, because it’s like, I know what it’s like to lay in a hospital bed and to have like, these end-of-life regrets, almost thinking that you’re going to die.
Jenna Muscat 33:48
Like I so distinctly remember lying in the emergency room. My dad was there. He was talking to the doctors, and I so distinctly remember thinking like, oh my god, I’m going to ruin my family’s life. Like I remember thinking that I was just this, like a cannonball that was just going to implode and just hurt everyone around me. And I remember going through my family and thinking, what is my brother going to do when I’m gone? What about my mom? What about my dad? Like, are they ever going to be okay again?
Jenna Muscat 34:19
And that is something like that honestly haunts me a lot, like having those thoughts, but I think it’s also just changed me in such a good way. So I’m never one to to like to sugar coat things, or I don’t like just like toxic positivity, but I think if you can take something really bad that happened, you would find the good in it, then there’s nothing toxic about it. I think that’s just making the most of it. So
Bill Gasiamis 34:45
I love your concern about other people, like in the worst time of your life, you’re concerned about other people, and it reminds me.
Jenna Muscat 34:56
I so distinctly remember it too, like I just remember the chaos ensuing around me at this point, like, honestly, I had accepted that I was going to die, like it wasn’t a question, like I thought I was going to die. And I just remember thinking like, my dad, he had just bought a piece of land in Utah to build his dream house that he had talked about our whole life, that he had worked so hard for.
Jenna Muscat 35:16
He had just bought a piece of land three weeks earlier. And I remember thinking like, is he still going to build the house once I’m gone? I remember thinking like, I hope he still builds it. And I think that was the hardest thing, is just thinking that I was just going to ruin the people around me, and I wouldn’t be here to pick up the pieces. And that was hard.
Bill Gasiamis 35:36
I can’t imagine how hard it is. My particular experience was similar. So I’m sitting there lying in the hospital, and, you know, we’ve got a large Greek family. Everyone loses their shit as soon as something’s wrong with somebody, right? And then what happened was, for me, they had to tell the parents and the grandparents and sorry, my parents and the extended family, my in laws and all that kind of stuff.
Bill Gasiamis 36:04
And they all, you know, just panicked, and they all go nuts. And then I remember thinking like, I’ve gotta pretend that I’m better than I am, because if I appear to be better than I am, then hopefully they can all remain calm, and the more calm they are, the more calm I can be, and then we can have a better, more calmer approach to the whole what the hell’s going on, you know, situation in those very early days.
Bill Gasiamis 36:36
And the thing about me is they thought nothing of it initially, because I played it down as much as I possibly could. But then six weeks later, when I had another bleed, well, then that kind of threw a spanner in the works. And then my plan to stay calm and pretend that I’m okay, and all that kind of stuff went out the window. And then when it happened again, almost two and a half, three years later for the third time, then it was like, sorry guys, like, I’ve let you down.
Bill Gasiamis 37:05
I’ve pretended that everything’s okay, but it’s probably not. And then we had to do brain surgery, and then it’s like throwing them again into the deep end of crazy emotions, like, what’s going on? Where are we at with this thing, and why you still unwell, and how serious is this? And then waking up from brain surgery, not being able to walk again, it not being able to walk initially, and then learning to walk again, and all that kind of stuff.
Bill Gasiamis 37:33
And I feel like, the whole thing was about how do I keep them not being traumatized by this while I’m being traumatized by it the whole time? And then I thought about my kids and my wife, and it was ridiculous that I would even be doing that. I should be focusing on myself, but I couldn’t help it like you.
Jenna Muscat 38:02
It’s a lot, and I think a lot, you know, I think there’s such a negative connotation with being selfish, like we always just need to put other people first, but I think sometimes you have to put you first. And I think, you know, obviously, for me and you that’s something we struggle with, even if you know we’re the ones suffering from it, but at least in my perspective, I would rather myself suffer because I can control that. I don’t want someone else to suffer because I can’t control that.
Bill Gasiamis 38:31
I also love what you said a bit earlier about the fact that it’s the worst thing that happened to you and the best thing that happened to you, right? So I’m not sure if you know about my book.
Jenna Muscat 38:41
I did, and I caught the, what’s the book title? Again, something along those lines. The Unexpected Way That The Stroke Became The Best Thing That Happened. I mean, I completely agree. I completely agree not to take away from how horrible it was, because it was horrible, and it was awful and it was traumatizing, and I’ll live with it for the rest of my life, but I wouldn’t take it back.
Bill Gasiamis 39:04
It’s from a personal growth perspective, that it’s the best thing that happened to you, right? It’s clearly not from a medical perspective, right? No one’s saying, Yeah, let’s have a stroke, you know, like it’s going to be fun.
Jenna Muscat 39:15
Yeah I know, I would not recommend. But I mean, I think if you’re able to take that perspective and use it to your advantage, like your stroke can either make you or break you. You can let it be the anchor that sinks you, or you can let it be the thing that makes you better than you were before. And I don’t think it’s always that black and white, like I’m not saying this, as if I have this, you know, philosophical approach to everything, and I don’t still have hard days, like I’m on so many anxiety medications trying to control my health anxiety, I cry about my stroke, I have nightmares where I wake up and dripping sweat feeling like I’m paralyzed again. But you know, still, we persist and we move forward, because what else are you going to do?
Moving Forward After The Cerebral Venous Sinus Thrombosis

Bill Gasiamis 40:00
Absolutely nothing. You can’t curl up in a ball and capitulate. You definitely can’t do that. There is no point in that. That whole thing we spoke about that’s going to make your family even more uncomfortable and feel bad about the whole situation and not know what to do and be worried about you. So I think learning about what you can do to get better and overcome the things that you need to overcome, and then accepting the things that you can’t overcome.
Bill Gasiamis 40:31
You know, that’s really what the game is about. It’s about what do you do to take the next step forward, even though you’ve had a number of setbacks, and you’re taking those knocks, and then you’re end up 10 steps back, or 50 steps back, and then you gotta go forward. It’s like, I’m always what can I do to take me the next step forward? The podcast was that first, it wasn’t the first thing.
Bill Gasiamis 40:55
The first thing I did to take a step forward was get up and talk on behalf of the Stroke Foundation and do stroke prevention talks I did that year one after that, I used to do, I used to I went and got personal development courses that I attended so that I could develop my skills and work on my emotions and find new ways to navigate my daily life, right?
Bill Gasiamis 40:55
And to achieve some of my goals. Then somebody gave me a challenge and said to me, maybe you want to share what you’ve been learning. How do you want to share that? And I thought, I’ll just do that in my local community. I’ll do some talks or whatever. And then they gave me the challenge of, well, there’s this thing called the internet, you know, so why don’t you share it on the internet, right? And then I thought, Okay, I’ll do that. And I started the podcast, and then I wrote the book.
Bill Gasiamis 41:45
Like all the things that I’ve done are all about me looking for the next thing to help me get to the next thing that’s going to make me feel better, deal with this better, feel like it was, what’s the word? Like, uh, like, it was a thing that happened to me so that it could kick my butt, so that I could move, get on with things right, so I could take some positive steps in the right direction.
Bill Gasiamis 42:13
Not that I wasn’t. But want to compare myself today to the guy that I was before, like, a pretty mundane kind of boring kind of guy still doing all the amazing things like raising a family and working and meeting with friends and all that kind of stuff, but there was no real substance.
Jenna Muscat 42:33
I’m definitely the same way I look at myself before and I was such a wallflower, I walked into a room, and almost apologized for being there. I saw great things happen to my friends. I never thought they were going to happen for me. I never put myself out there. I was scared of failure, rejection, and those are all still things I struggle with. But now I just do everything scared, and I do it anyway, because it’s like I’d rather do that than do nothing.
Jenna Muscat 43:02
I think, you know, after I had my stroke in the hospital, you know, you think on your life, right? You think of these like end of life regrets, almost, and like almost everything I regretted was things I hadn’t done, things I was too scared to do. And so now I try to use that to change how I live my life now. And it doesn’t always abide by that I still struggle with being scared of you know, so many things, but you know, you try your best to work through it and to not make the same mistakes you made before.
Bill Gasiamis 43:28
I love the fact that you said that like you do it scared anyway.
Jenna Muscat 43:34
Do it scared. I mean, do it scared or don’t do it at all. What are you going to regret more?
Bill Gasiamis 43:40
And what have you learned like about fear?
Jenna Muscat 43:44
I’ve learned that fear. I think a lot of people don’t truly understand what fear is right, because we always think, Oh, I’m scared to do this. I’m scared to do that. But then something that happens in your life that shows you what fear really is right, like nearly dying, and then you realize that that kind of fear is, you know, the fear of rejection is nothing compared to that.
Jenna Muscat 44:05
Like, you know, you think about it and like it’s also insignificant, like we’re literally, like, on a floating rock in the middle of space, like it’s not that serious. And I think, you know, this sounds also philosophical, and I promise, I’m not always like that, and I still struggle immensely with putting myself out there and taking risks and chances, but I’m working on it.
Bill Gasiamis 44:29
Yeah, it’s good to have bouts of philosophy to stuff everything up right, and to like, test you, and to make you make a choice and make a decision that you struggled to make for such a long time.
Jenna Muscat 44:43
Like pushing the baby bird out of the nest and saying fly, I’ll probably hit the ground, but that’s fine. I’ll try again. Or, you know, I’ll get up tomorrow, you know, I’ll have an hour, and I’ll cry about it, but then we’ll move on. I think that’s my biggest thing now, is whenever I do something. I’m like, well, this could go horribly, this could blow up in my face. And before, I would have just not done it. But now I’m like, well, I’ll do it. And if it does blow up in my face, then I will deal with that then. I’m very much so now I will cross that bridge when I get there, instead of just being scared to cross it at all. That’s a gift that I’m so thankful for.
Bill Gasiamis 45:25
It’s way better to be that way instead of kind of being worried and concerned about what might happen that may never happen, right? You worry about all these things. For example, I’m doing a presentation in about a month at a Stroke Conference, and it’s about my book, but I have to deliver it kind of in a scientific way they don’t want me to go there and talk about my book. I’ve got 12 minutes, that’s all.
Bill Gasiamis 45:51
And you know, when I signed up for that, I hadn’t done the book launch yet, and as a result of that, after I cried at the book launch, I figured, oh my god, I’m going to be in a room in front of clinicians and all these people, and the last thing I want to be doing is crying. But I’ve accepted the fact that I’ve got to do the presentation regardless. I’ve signed up for I’ve been accepted, and I’ve got to accept the fact that I might cry, and I don’t know if it’s going to be a good day or not a good day, and I don’t know, but I’ve got to go for it. And what I found is crying in front of an audience anyway, that it sucks them in even further, like you don’t lose audience members when you cry. They empathize with you way, way more.
Jenna Muscat 46:44
You should never apologize for feeling your feelings, you know? Nothing good has ever come from suppressing them.
Bill Gasiamis 46:55
No, absolutely not, right. So that’s the thing, and it’s like, oh, well, I’ve already signed up, they’ve already accepted me. You know, what am I going to do? I’m not going to go and present on my book because there’s a slight chance I might cry, and the male ego in me doesn’t want to go down that path, you know, whatever.
Taking Chances
Jenna Muscat 47:12
But imagine yourself, you know, back in the hospital right after your stroke, knowing that years from now, you’re going to be worried about crying on a stage to give a presentation about what you’ve survived, and it doesn’t seem that heavy anymore. That’s actually pretty cool.
Bill Gasiamis 47:28
It doesn’t indeed, exactly. And then I do go back, and I do have those conversations with myself about end of life regrets, and they do come up those, if I don’t do this, this is going to be an end of life regret, like, what are you talking about? You’re not going to do it. And that’s kind of the good part about being in hospital with all the machines attached to me after having a blackout, after not knowing my name, not recognizing my wife.
Bill Gasiamis 47:55
You know that’s the good thing about it, is it’s like I got past that and for the time being, I’m going to make the most of the amount of time that I’ve got left. And everything I procrastinate doing before, procrastination used to win. Now procrastination doesn’t win. Everything I am afraid or procrastinate about doing, I find myself kind of in this weird mode that I get into.
Bill Gasiamis 47:55
Like, when I applied to do this, to present at this particular conference, it was just at a moment’s ridiculous time, like, I think I was watching TV. It was about nine o’clock in the evening, and I knew about this Stroke Conference that it was happening. I said to my wife, I’m just going to jump online for a second and go and apply for this particular presentation. It was like one of those types of moments in about 25 minutes after worrying about it or mulling it over in my head for a few weeks.
Bill Gasiamis 48:21
It was done and it was sent across, and then I forgot about it, and then I received an email X amount of weeks later, which said, Oh, by the way, you’ve been accepted. Please complete this form. And it’s like I have these crazy kind of moments where my head kind of switches off. Everything goes away, all the worrying parts of me kind of just they have a moment of quiet, and then the true me goes, alright, now’s the time pounce.
Bill Gasiamis 49:20
Go and fill out that form and apply for this thing and get it done. That’s how the book launch happened as well. The book launch happened because the lady whose Cafe it was and the guy who runs the cafe, they said to me, why don’t you do a book launch at our cafe? You know, we’ll give you the venue. You know, you can bring some people there, etc. I said, All right, that’s cool.
Bill Gasiamis 49:41
And I never thought anything of it. And then she booked it. She just said, we’re going to do this, and started promoting it. And then I was kind of like, oh, okay, all right. Then, yeah, thank you. I’ll make sure I turn up. So. So that’s kind of how it happens for me now. And I look back, what’s cool about that, Jenny, is I look back and I go, Oh my gosh, like you did that. Well done. You know, I really do pat myself on the back.
Jenna Muscat 50:11
Yeah, I get what you were saying about procrastination earlier. I mean, I think my biggest thing now is again, this sounds so philosophical, but like life is unpredictable. Don’t wait around to take the trips. Don’t wait around to tell the people you love that you love them. Don’t wait around for these perfect opportunities. Just do it now, life is short. It’s unpredictable. So if you have the opportunity and you can do the things you want now make it happen.
Bill Gasiamis 50:43
Yeah, 100% agree with you. Tell me about your Tiktok account. There’s almost 10,000 followers there. What kind of posts do you put up there? How has that helped you with your recovery? How has it helped when you found people that are like you?
Jenna Muscat 50:58
So I started making tiktoks about, maybe a year and a half, two years after my stroke, I started just making silly little tiktoks about my stroke, and it kind of just took off. And from there, I started answering people’s questions about strokes, and it turned into me just advocating about strokes, advocating about the risk of hormonal birth control pills, advocating for, you know, speaking up for yourself in a hospital, and how to advocate for yourself in a hospital.
Jenna Muscat 51:30
And I have connected with so many amazing people, and so many people that unfortunately have stories, you know, very similar to mine, or you know, they have family members who had, you know, stories similar to mine, but they didn’t have the outcome that I had, and I’ve been able to connect with some really great people that I still keep in touch with to this day.
Jenna Muscat 51:53
I think, I found a lot of comfort, it feels like that. If I’m making tiktoks and I’m educating people that I’m making a positive impact and taking this thing that happened to me, and even though I feel like the problem is so big, maybe I’m, you know, helping one person, and it’ll save one person’s life, or and my biggest thing is It keeps me up, and it haunts me that this is just going to keep happening to people. So if I can help raise awareness and give someone that knowledge, that I wish I had, then I can sleep a little better at night, and it makes me feel a little better about the whole situation.
Bill Gasiamis 52:35
You really are making a difference, and I know that because I’ve been doing this now since about 2017 but I’ve been doing it seriously, probably for the last three or four years, where I’m putting one episode a week out. And it was about six months ago, somebody reached out to me and said, credit where credit’s due. Because of one of your interviews, I avoided a stroke.
Bill Gasiamis 53:04
And I was like, tell me more, what happened. And she she had a vertebral artery dissection. Anyhow, she had a dissection in one of her arteries, and it caused a headache, a certain headache, and I don’t know what keyword she typed into Google search, but she typed the particular keyword that brought up a video that I did with another stroke survivor who had the exact same condition, and the interview was with a lady who was describing her symptoms, and this person found that video, listened to it and thought, oh, that’s kind of like me, but not similar, not exactly the same.
Making A Difference In The World Of Stroke Recovery
Bill Gasiamis 53:49
And then she went on to my YouTube channel and did a search for the particular videos in that playlist and found another one that was exactly like her symptoms. And then she told her husband to take her to the hospital. And they specifically told the doctors exactly what her condition was, what I’m experiencing, and I have a vertebral artery dissection. And of course, they would have thought that she was mad, but they scanned her head, and they found the dissection, and she completely avoided a blood clot forming and causing a stroke.
Jenna Muscat 54:31
That shows the importance of, you know, using your voice and your situation to advocate, because it does make a difference. That’s that’s what I hope comes from my situation, is I just, I don’t want anyone else to have to go through this.
Bill Gasiamis 54:49
It makes a difference. You may not know about it, because in the hundreds of 1000s of downloads that my podcast has had, that’s one person who’s actually reached out to say something I know a lot of people don’t reach out to say something, even though they might be having a positive experience, from watching a Tiktok or listening to a video, etc.
Bill Gasiamis 55:08
And that’s the cool thing about it, right? It really does make a difference. You may not have the evidence because somebody didn’t contact you, but 100% is, I know it makes people feel better, and that’s the good thing about socials and YouTube and all that kind of stuff. You know, people do get all upset and annoyed about some of the things that happen because of social media, but really, so many good things that come out of it. You’re using it for the perfect reason.
Jenna Muscat 55:38
I’ve had several people reach out to me and say, you know, since I’ve been on Tiktok, I think more young people are having strokes. And I was like, I don’t know that it’s more young people are having strokes, as if more young people are able to tell their stories now. Now you’re hearing about it, and I think that’s kind of the beauty of, you know, platforms such as Tiktok is you don’t just see posts from your friends. You see posts from strangers. You see the things that happen to them, and you’re able to learn about just people’s lives and the things they’ve gone through. And I think that that’s a really cool side of social media.
Bill Gasiamis 56:12
See, and there’s no other way that you could get in front of 934,000 other people when you wanted to share about the side effects of the hormonal birth control pill, like that video reached nearly a million views that’s so phenomenal, that is such a great thing, you know? And that’s potentially people in that group that are going to experience something and go, I think I remember hearing something about that somewhere, I better do something about this.
Jenna Muscat 56:46
That’s my biggest hope. Because I remember being in the hospital, and at the time, I had no idea what was happening to me, and it was terrifying. If I was able to think back to a Tiktok that I had seen that said, Oh, this one girl said this happened to her. Maybe that’s it. I could have said it to doctors. Maybe they would have been like, You’re crazy. You don’t know what you’re talking about, but let’s run that test to get her to shut up. That would have saved me a lot of time and a lot of trauma.
Bill Gasiamis 57:13
Yeah and then there’s that other video, women deserve better, right? Women’s Health is the hashtag that I’m seeing on that particular post, 2.3 million views on the fact that you’re saying I went to the hospital. I said this, and I said that, and they brushed it off, and they gave me valium instead of looking at my head and trying to work out what was going on. I mean, that is so powerful, because what that’s doing is telling people to trust their gut instincts that’s telling them to, you know, persist when they go to the doctor, to not just allow somebody to convince you that there’s nothing wrong with you when there in fact is.
Jenna Muscat 57:51
Exactly, I mean, I think the biggest thing is, like all you have in life is your voice and all you that’s all you have to advocate for yourself. And it’s really hard when you use that and it still doesn’t seem to do anything. And so I think that’s where we all just need to learn to advocate for ourselves and also, like, you know, maybe someone that works in a hospital will see my videos, and next time someone comes in complaining of a headache, they’ll think twice on it, you know, I I just hope something positive comes from it in whatever shape or form that might be.
Bill Gasiamis 58:28
I know it will. I definitely know it will. And then you’ve got another video there, 1.8 million views, like just those videos, 6 million views combined between those three videos where you’re talking about going to the ER doctor and the doctor again, you know, dismisses what you said. It’s just, it’s a great thing that you’re doing, and it is going to make a difference, and it is going to empower, give people, like an insight into what happens when they have a condition and they go to the hospital and something goes wrong.
The Hardest Thing About Cerebral Venous Sinus Thrombosis
Bill Gasiamis 59:07
It’s an awesome little Tiktok page there. And people who are listening and watching, there’ll be links in the show notes that you’ll be able to go to and connect with Jenna there and follow that Tiktok account. I think it’s really important that we follow it and then share, share those videos in our own communities to raise awareness. Tell me what was the hardest thing about stroke for you?
Jenna Muscat 59:34
The mental recovery, 100% I just, you know, always thought that once I was fine physically, that I would just be fine, and it was like, the healthier I got, the worse my mental health got. I mean, no one talks about that part of stroke recovery at all, but like I felt like I had survived a stroke just to have PTSD nearly killed me, like I felt just paralyzed by fear.
Jenna Muscat 1:00:01
I could not be by myself, I could not go to work, I thought the second that I stood up I was going to drop dead. There was no amount of doctor’s reassurance scans, reassurance tests, reassurance that convinced me otherwise. I was passing out in the MRI scanner machine getting my scans, because my anxiety was so bad, it was horrible, and I felt so alone.
Jenna Muscat 1:00:28
And it’s not that I didn’t have a great support system, because I had the best support system. My family and my friends were amazing, but I think at the end of the day, they just didn’t get it. Because I feel like to other people, it’s like, almost like you’re being dramatic, like you survived this, you’re fine, move on with your life, and it’s like, I would love to move on with my life, but I have never felt more, not fine before.
Jenna Muscat 1:00:54
And it was incredibly hard. It’s something I still deal with. Just about a year ago, it got really bad again, and it’s like, you know, it’s like, at this point, like, haven’t I given enough? Like, hasn’t this thing taken enough from me? And, you know, I have learned that this isn’t the last time I’m going to have hard days, I’m there’s going to be another point in my life where this health anxiety and the PTSD comes back and kicks me down.
Jenna Muscat 1:01:24
But I think what you know makes it a little easier each time is knowing that I’ve gotten through it before. It’s like when it’s bad every day is a bad day, and then slowly but surely, you start to have better days, until you don’t remember your last bad day, and then inevitably, you have another one. Because I’m certain at this point that healing isn’t this, you know, destination where you’re just fine.
Jenna Muscat 1:01:48
Like, I don’t think that that exists. I’m going to deal with this the rest of my life, and in some ways, that sucks, but you know, like, that’s okay. This is, you know, these are the cards that I was dealt, and I’m just going to make the best of it, and I’ll deal with those hard days when they come, and I’ll get through them.
Bill Gasiamis 1:02:06
You will. And as time goes, you’ll get better at dealing with them, and you’ll get more resilient, and you’ll grow a thicker armor, and you know, you’ll be able to really look back on it like I do, even though I have these, you know, bouts where it gets me, I look back on it as such a thing that happened so far away, like such a distance away that I almost can’t connect it to me anymore, because it’s so far away. I have all this proof that it happened, you know, scar on my head, a book, a podcast and all, but it happened so long ago, I can talk about it as if I’m sharing a story rather than something that happened to me. So it’s not re traumatizing me.
Jenna Muscat 1:02:54
When I think about it, it’s almost like it feels like a movie I watched or a book that I read, because I feel so different from that person that I was then that it almost just feels like a lifetime away, yet at the same time, still just like yesterday, but I just feel like I’m such a different person now, it’s like that couldn’t have happened to me but it did, and it’s weird, because you get in this weird place of having just such a distinct perspective about it.
The Lessons From The Stroke
Bill Gasiamis 1:03:25
And that’s the power in talking about it and connecting with other people. That’s the power, that’s not what you get from doing that. It might feel difficult at the time when you’re trying to go to those emotional spots and, you know, battle them and tackle them and talk about them. But eventually, what it turns into, it turns into like this distant memory that you reflect on, rather than re traumatizing yourself every time you speak about it. That’s kind of what I’ve got after 312 episodes or so. Tell me about what stroke has taught you.
Jenna Muscat 1:04:00
I think it’s taught me that life is very short, it’s very unpredictable. Just to cherish the now as as much as I you can and you could, that sounds so philosophical, but, yeah, life, life is very short. If you want to do something, do it now, you know, tell the people you love that you love them, and treat them like it, and do all the fun things you want to do, because you know, nothing’s guaranteed.
Jenna Muscat 1:04:31
It’s taught me that you know, as far as you know, health care has come. You still have a long way to go. I think, you know, it’s a whole another conversation about the side effects of birth control and why we aren’t doing more about that. But, yeah, I think, I think the biggest thing I’ve learned is just, life is short. It’s, painfully short and unpredictable. So. To do all the things you love and love the people you love, and enjoy it while you can, which sounds a little bit slower, but I don’t mean it in a morbid way like you’re going to die someday, but.
Bill Gasiamis 1:05:13
True, it’s still all true. What about there’s some people listening who are just on their journey. They’re starting out now, right? They’re looking for advice. Give them, you know, share some advice with somebody who might be going through something similar to what you’re going through.
Jenna Muscat 1:05:33
I wish that I had known that my mental health was going to suffer. I wish that I had known that post stroke, PTSD depression was something that most stroke survivors will deal with. I would say, get ahead of it. You’ve been through something very traumatic, maybe check out therapy like just get ahead of it and figure out what those supports are that you need, take care of your health, figure out what you need to do for yourself.
Jenna Muscat 1:06:02
You know, we talked earlier about, you know, worrying about how other people would react, like, figure out how what you need for yourself. And just know that, like, if you choose to, this can be the thing that makes you better. It can also be the thing that breaks you, and it will try to break you time and time again, but you’ve had the power to survive this, you also have the power to survive the aftermath.
Bill Gasiamis 1:06:30
Yeah, I love that part. That’s awesome, right? So I go to counseling irregularly now, but for many years, I went regularly once a month for many, many years, and now I just go kind of whenever I’m feeling like I need a bit of a top up. How are you dealing with all of that stuff, the PTSD and all that? Are you seeing somebody that is supporting you with that, other than the medication?
Jenna Muscat 1:06:57
Yeah so I’ve been in therapy. I started going to therapy about a year after my stroke, when my PTSD, really, you know, got really bad, and I think that was really important. I love to read couple books that I’ve read that are really good. What is it called the body keep score. Is one of the best books that I have ever read. It really helped me understand why it was my PTSD was making me feel the way that I was, and it just I’m the kind of person like I love knowledge.
Jenna Muscat 1:07:34
So understanding my anxiety was very big to me. I loved learning about anxiety, especially health anxiety, that that in particular. So therapy, reading, find what works for you. You know, not everyone is the same. Medication for me was life saving, and I will, you know, I know some people are want to steer away from that, but for me, it was something that I really needed.
Jenna Muscat 1:08:00
And you know, I’ve tried to get off it a couple times, thinking like, Oh, I’m doing better, and then quickly I’ll realize, like, if you weren’t doing better, the medicine was just doing what it was supposed to do. And that’s okay, because I think for a long time I, you know, had the mindset of, I don’t want to need this crutch for the rest of my life. But trauma is real, and it alters the chemistry of your brain, and sometimes you need a little extra chemical help to get through it, and that’s okay, and it doesn’t make you weak.
Bill Gasiamis 1:08:27
And you can keep trying to get off it as time goes. You can keep trying and keep trying, and it’s going to give you a good sense of where you’re at, and you then you’re going to be able to regroup, and you’re going to know what else you need to do and how much more work you need to do, and that’s okay. And I love what you said about that is that, you know, taking away that kind of stigma from being medicated to help with PTSD or anxiety.
Jenna Muscat 1:08:52
I know for me, like a big concern of mine, getting on medication was, well, this whole trauma that I’m dealing with was caused from a side effect of medication, and now I’m going to get on more medication. Like, what is this going to do to me? But, you know, it truly was such an amazing support for me, and still is, and I’m, you know, thankful for the life I live now, with the help of therapy and my friends and family and, you know, anxiety medication, it’s done wonders for me.
Finding A Therapist
Bill Gasiamis 1:09:24
Was it easy to find a therapist that you connected with? How do you sort of go about that? What was that like for you?
Jenna Muscat 1:09:33
Gosh, I think I’ve seen four therapists. I think it’s kind of like dating. You’ve got to find the right fit. And I think a lot of times, people can be discouraged because they go to therapy and it wasn’t good, but I feel like, you know you’ve got to find your right person, and then when you do that, like therapy is hard, it’s not always sunshine and rainbows, and you walk away feeling better.
Jenna Muscat 1:09:54
Sometimes it brings up really hard feelings and emotions, but it’s an ongoing process, and I would. You know, encourage anyone to stick with it and give it a chance to work. And also, like, if you try therapy and you don’t click with your therapist, shop around. Like, there’s a lot of really amazing people out there. And you know, there’s a variety of mental health issues that people people deal with. They’re not always going to find someone that clicks with what you need. But, you know, keep trying.
Bill Gasiamis 1:10:22
I think that’s really important. I know a lot of people say, you know, I’ve been to one therapist and no good. I’ve been to another one no good, and I’m sick of trying to find them or whatever. It’s really important that you find the person with the right fit, because what they do is they create a really safe space for you to do those hard yards, you know, to have that hard conversation that is going to be challenging and draining and whatever, but that’s the point of therapy. It’s to help you go to those places yet that you otherwise might not have gone to because it was going to be really hard.
Jenna Muscat 1:10:58
Really helps facilitate, you know, just becoming aware of everything that you’ve dealt with and how you’re feeling about it, because I think so many times, even if we don’t mean to suppress how we’re feeling, I know, at least for me, I’m very avoidant, and I try to bury everything, to just not feel it and not deal with it. But you know, as I’ve painfully learned it, it’ll always come out.
Bill Gasiamis 1:11:21
Yeah, I love, also, what you said about educating yourself and learning, you know, the book the body keeps score, and therefore, like knowing that what you’re experiencing, that that physical reaction, or that anxiety reaction, and you’re able to then to observe yourself, and you can go, Well, I know what this is. It’s not pleasant. It’s yeah, not unfamiliar, but I know what’s happening, and it kind of, it kind of takes the edge off. It does it mentally?
Jenna Muscat 1:11:54
It does. You know, my anxiety manifested very physically, ironically enough, in semi stroke symptom form, I would feel dizziness, I would feel numbness in my body. So I got stuck in this loop of my anxiety is caused from the stroke, yet my anxiety manifests physically into these almost stroke like symptoms. But then that’s what they told me when I went to the hospital when I was having a stroke, is that it was anxiety.
Jenna Muscat 1:12:20
So you get caught in this loop, but I think just me absorbing that knowledge. I mean, I read book after book after book, just learning, and the more I learned, the more faith I had in my own body and my own, you know, nervous system and understanding, like the fight or flight response and panic attacks and what that looks like.
Jenna Muscat 1:12:41
Because I think people throw around the word panic attack all the time, but then you’re on the floor, hyperventilating, and your body’s numb and you can’t move, and you’re like, This clearly cannot be just a panic attack, right? Like this is a medical emergency. So knowledge is power in all ways, shapes and forms. And that was one of the biggest things that helped my anxiety was just learning about it.
Bill Gasiamis 1:13:05
Yeah, thank you so much for sharing and joining me on the podcast. I really appreciate it. I think your approach, your philosophical approach to this, is to be commended. And it’s really cool that you can come on here and be so open about all the stuff that you’re experiencing. Because I think even some other stroke survivors like there may still be feeling like, you know, some of the stuff that they’re going through is taboo, too taboo in their community to talk about.
Bill Gasiamis 1:13:38
So they can listen here and feel normal and feel okay, that you know that it’s part of their recovery and that they need to maybe do some work about it. So I love the work that you’re doing on socials and Tiktok. I encourage everyone to go across and go to recoveryafterstroke.com/episodes, to find all the social media links. Thanks so much Jenna.
Jenna Muscat 1:14:04
Yeah, thank you for having me. I’m looking forward to reading your book.
Bill Gasiamis 1:14:08
Well, that’s another episode done. I do hope you enjoyed the discussion. Remember to subscribe to my Patreon page. Visit patreon.comrecoveryafterstroke. You will also find the link in the YouTube description and in the show notes of this episode at recoveryafterstroke.com/episodes.
Bill Gasiamis 1:14:28
If you want to know more about my amazing guests, also visit recoveryafterstroke.com/episodes to find out their social media links and to download a full interview transcript. A huge thank you to everyone who has already left a review. It does mean the world to me, your feedback is crucial for the podcast success, helping others discover this valuable content, and making their stroke recovery journey a bit easier.
Bill Gasiamis 1:14:56
If you haven’t left the review yet, please consider giving a five-star rating. And sharing what the show means to you on iTunes and Spotify. For those watching on YouTube, remember to leave a comment below, like the episode and subscribe to the show on the preferred platform to get notifications of future episodes.
Bill Gasiamis 1:15:16
If you are a stroke survivor with a story to share, come and join me on the show. The interviews are unscripted and require no preparation. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact, fill out the form with the category that you belong to, and I will get back to you with details on how we can connect via zoom. Thank you once again for being here and listening. Your support means everything to me. See you on the next episode.
Intro 1:15:57
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 1:16:14
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or 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 1:16:37
The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional.
Intro 1:17:05
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 1:17:29
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 Healing and Hope: Jenna Muscat’s Ischemic Stroke Recovery appeared first on Recovery After Stroke.
1 hr 18 min
August 05, 2024Young Stroke Survivor’s Inspiring Recovery Story – Kenya Robinson
Comprehensive Guide for Young Person Stroke Survivors
Strokes can be devastating at any age, but they are particularly impactful when they strike the young. This post delves into the unique challenges faced by young person stroke survivors, offering essential information and support strategies to help them navigate their recovery and life beyond.
What Causes Strokes in Young People?
While strokes are often associated with older adults, they can occur in younger individuals due to various factors. Key causes include:
1. Genetic Factors
Some young people are genetically predisposed to conditions that increase stroke risk, such as blood clotting disorders or certain heart diseases.
2. Lifestyle Factors
Lifestyle choices, including smoking, excessive alcohol consumption, poor diet, and lack of exercise, can contribute to stroke risk even in young individuals.
3. Medical Conditions
Certain medical conditions, such as high blood pressure, diabetes, and autoimmune diseases, can elevate the risk of stroke in younger populations.
4. Trauma and Injury
Head injuries or trauma can lead to strokes, especially if they cause damage to blood vessels in the brain.
Recognizing the Signs of Stroke in Young People
Prompt recognition of stroke symptoms is crucial for effective treatment. Key signs to watch for include:
Sudden numbness or weakness in the face, arm, or leg, especially on one side of the body.
Confusion, trouble speaking, or understanding speech.
Difficulty seeing in one or both eyes.
Trouble walking, dizziness, or loss of balance and coordination.
Severe headache with no known cause.
Recovery and Rehabilitation for Young Person Stroke Survivors
Recovery from a stroke can be a long and challenging journey, especially for young person stroke survivors who may face unique challenges.
1. Physical Therapy
Physical therapy is often essential to regain strength, coordination, and mobility. Tailored exercises help rebuild muscle function and improve overall physical health.
2. Occupational Therapy
Occupational therapy assists survivors in relearning daily activities and adapting to new physical limitations, focusing on improving quality of life.
3. Speech Therapy
For those experiencing speech and language difficulties, speech therapy can be crucial in regaining communication skills.
4. Psychological Support
Emotional and psychological support is vital. Many young stroke survivors experience anxiety, depression, or frustration as they adapt to post-stroke life. Counseling and support groups can provide significant help.
Long-Term Support and Lifestyle Adjustments
Adapting to life after a stroke involves ongoing support and lifestyle changes to minimize the risk of recurrence and improve overall well-being.
1. Healthy Diet and Regular Exercise
A balanced diet and regular physical activity are critical in maintaining cardiovascular health and preventing further strokes.
2. Medication Management
Adhering to prescribed medications and regular medical check-ups can help manage underlying conditions that may have contributed to the stroke.
3. Community and Peer Support
Engaging with community resources and connecting with other young stroke survivors can provide valuable emotional support and practical advice.
4. Education and Awareness
Raising awareness about stroke prevention and the unique challenges faced by young person stroke survivors can help reduce stigma and promote better support systems.
Conclusion
Young person stroke survivors face a unique set of challenges, but with the right support and resources, they can lead fulfilling lives. By understanding the causes, recognizing the symptoms, and accessing comprehensive recovery and support strategies, young person stroke survivors can navigate their journey towards recovery and a healthier future.
FAQs
Can stress cause a stroke in young people? While stress alone is not a direct cause, chronic stress can contribute to risk factors such as high blood pressure and unhealthy lifestyle choices that may increase the risk of stroke.
Are young women at higher risk of stroke? Certain conditions like pregnancy, childbirth, and hormonal changes can increase stroke risk in young women, especially if they have other risk factors.
How long does it take to recover from a stroke? Recovery time varies significantly based on the stroke’s severity and the individual’s overall health, ranging from a few months to several years.
Can strokes be prevented in young people? Adopting a healthy lifestyle, managing chronic conditions, and avoiding smoking and excessive alcohol can significantly reduce the risk of stroke.
What support is available for young person stroke survivors? Support ranges from medical and therapeutic services to community groups and online resources specifically designed for young person stroke survivors.
Young Person Stroke Survivor Interview With Kenya Robinson
Listen to Kenya Robinson’s inspiring journey as a young stroke survivor. Discover her recovery, lifestyle changes, and valuable tips!
Facebook
Instagram
Highlights:
00:00 Introduction
01:00 The Beginning Of A Young Person Stroke Survivor Journey
07:43 Denial Of Stroke
16:37 Hemorrhagic Stroke And Deficits
18:15 Pros And Cons Of Caffeine
31:47 Getting Back To Jazzercise
40:30 Living With Altered Senses
50:23 Developing Body Awareness
1:03:36 Running After The Stroke
1:15:29 The Hardest Thing About Stroke
1:19:25 The Lessons From The Stroke
1:20:43 Grace After A Stroke
Transcript:
Introduction – Young Person Stroke Survivor Kenya Robinson

Kenya Robinson 0:00
Welcome to Episode 315 of the recovery after stroke podcast today we have an incredible story of courage and recovery as we chat with Kenya Robinson. While teaching a Jazzercise class Kenya experienced a hemorrhagic stroke, an event that turned her life upside down.
Bill Gasiamis 0:19
Join us as Kenya shares her journey of regaining strength and balance, overcoming denial and stress, and finding new ways to embrace life after stroke. From managing spasticity and the benefits of aerial yoga to navigating the challenges of family life, Kenya’s story is a powerful reminder of resilience and determination. Let’s dive into Kenya’s inspiring recovery journey and learn how she continues to thrive and support others on the path to stroke recovery. Kenya Robinson. Welcome to the podcast.
Kenya Robinson 0:52
Thank you for having me. I appreciate this.
Bill Gasiamis 0:57
Absolutely my pleasure. Tell me a little bit about what happened to you.
The Beginning Of A Young Person Stroke Survivor Journey
Kenya Robinson 1:00
Oh, wow. Okay. So almost five years ago, I had a hemorrhagic stroke. I was teaching, I own a dance fitness facility and was teaching class and just kind of felt the effects of a stroke as it happened. I remember walking on stage, getting ready to teach class. And went to start the music, and my right hand couldn’t press play. And I thought that’s weird, I hit it with my left and, let’s keep going.
Kenya Robinson 1:42
I started to teach class, got through the heavy aerobic period, and was grateful when it ended. Because I felt winded and I knew with the strength portion coming up, I’d be able to kind of take a break, things come down a bit, I was in the middle of an upper torso routine when I lost the weight from my hand and I saw it dropping hit the floor.
Kenya Robinson 2:10
But in my mind, I was like how did that happen? Like, I don’t remember feeling it, it just dropped. Not long after that, balance started to become an issue. And I remember backing up against the wall and bracing myself and telling the class something’s wrong, but I’m okay we’re going to keep going with this routine.
Kenya Robinson 2:32
And they’re looking at me like, Oh, my goodness. And I see one of my members moved to her purse, and I figured she’s calling 911. Well, it’ll be okay, I’m just tired, I just need a little rest. And then when that song ended, I ended class and apologized because I felt bad that I couldn’t do it.
Kenya Robinson 2:57
But there really wasn’t no going on. The members rushed the stage and covered me in prayer. And I remember Andrea coming over to me and she said, I’m on the phone with 911 they want you to smile. I was like, No, we’re not gonna do it. And she was like, why? And I’m like, because that if I can’t smile, that means something’s wrong.
Kenya Robinson 3:22
And I don’t want there to be anything wrong with me. And it went from let me see you smile to stick out your tongue. And I was like, nope, not doing that either. I don’t want anything to be wrong. And that’s my last memory. I don’t remember the paramedics coming in.
Kenya Robinson 3:44
But I do remember getting on the ambulance. I don’t remember going into the hospital. But then there are conscious parts where I wake up and then go back to sleep. I missed an awesome helicopter ride. A little bummed about that to another hospital. Yeah, so that’s my story.
Bill Gasiamis 4:11
You’re an instructor what kind of an instructor?
Kenya Robinson 4:15
Oh, I’ve been an instructor of Jazzercise for 15 years in November.
Bill Gasiamis 4:23
That doesn’t sound like it’s a task, or a job, or a career that somebody who buries the head in the sand. Was this situation an instinctive thing to if I don’t express what’s wrong, then nothing is wrong. Was it like an instinct that’s like a survival thing? Or was it a mindset that came to the fore when all the things happen..
Kenya Robinson 5:01
To be honest, earlier that week, I had just felt like I was under a lot of pressure. Jazzercise is not my only job. It was not my only business at the time, I also had a tech based business, but I was running. And I remember saying, something’s got to change. I need to do things differently. Like, I don’t spend life living life, I spent, like putting out fires, I cannot take things a day at a time because it’s it’s happening as it happens.
Kenya Robinson 5:50
And I just remember the pressure of that. And my then husband at the time, I said, when I need to change something, and he’s like, Well, let’s sit down and talk about it right now. And I’m like, I can’t this week is so full, that I just need to get to Friday. If I can get to Friday, let’s sit down, let’s reorganize some things. Let’s talk about doing some things differently.
Kenya Robinson 6:20
And he said, Okay, that was on Saturday, I had the stroke Monday. So I didn’t make it through the week. But yeah, a lot of pressure, a lot of stress. And as a matter of fact, that was coming. Sorry, I had struck on Tuesday, as I was coming down, on my way to go to class, I was thinking this is the best part of the day, I’ll be able to just get stress out, let it go. And everything will be okay. But I think it was the events leading up to that. That really put me in the bind that I wasn’t expecting.
Bill Gasiamis 7:03
I imagined then part of it not happening, this is not happening to me, there isn’t anything wrong means that you can go back to your work to tech company and continue putting out fires, do all that kind of stuff. Continue doing the Jazzercising stuff.
Bill Gasiamis 7:18
So it’s like I’m too busy to be unwell kind of scenario. You might be surprised if I told you the amount of people who said exactly the same thing that you said, which was something’s got to change and then man, change came like nothing that they’ve ever wished before.
Young Person Stroke Survivor’s Denial
Kenya Robinson 7:43
Totally. I sit back and reflect, to comment on the first part of what you said, total denial, total denial, as it was happening, I’m in denial that it’s happening. And I was in that mode of less push a little more or less push a little more, let’s push a little more. Oh, see, we survived it less push a little more to the point of where my body was like, oh, no, we’re done pushing. And this is as far as we go. And I consider it a miracle that I hear. And I really feel like the stroke definitely changed my life. And definitely changes, especially now how I do things like after stroke, you kind of have no choice.
Bill Gasiamis 8:38
You either stay the same and suffer or change and recover.
Kenya Robinson 8:45
1,000%
Bill Gasiamis 8:47
You’re 49 at the time.
Kenya Robinson 8:50
No I’m 49 now I was 44 at the time.
Bill Gasiamis 8:54
You’re 44 at a time. So I imagine it wasn’t the only two years before the stroke that you’re pushing that hard. You’ve been pushing for a long time. It seems like it was just a way of life.
Kenya Robinson 9:10
Our family situation, I think was an unattainable one. We lived 40 minutes away without traffic from life, like work life, kid’s play life the social activities, it was 40 minutes with no traffic, you put traffic behind that. And then it becomes an hour and 10 minutes. So to get up and go to school, for me I think if you’re living locally, school is 5-10 minutes away.
Kenya Robinson 9:43
Well for my kids, they were up at 5:30, we’re on the road by 6:15 to get to school by 7:30. And back then I was like oh it’s family time. We’ll have this time on the road. We can talk about what’s going on, we’ll make it work. And I think it worked to our detriment because the kids would go to school, I’d go to Job A, which was one company and work until time to pick up the kids from school.
Kenya Robinson 10:17
I crockpot dinners at home, so like, bring them on the road, the kids would come to my office, they do homework, eat dinner, then the boys would go off to basketball practice. My daughter did tutoring, she tutored some students at the time. So she’d go and tutor students, or she’d stay in my office and work.
Kenya Robinson 10:38
And then I go teach the dance class, put everybody going pick up everybody from where they were, and then we’re on the road at eight o’clock at night, going that 40 minutes with no traffic, you get folks ready for bed. Now it’s 10 o’clock. And because I’ve taught a dance fitness class, I’ve got extra energy.
Kenya Robinson 11:02
So I’m like, Okay, we got win number three, let’s go to 2am in the morning, let’s finish some of the work. I didn’t finish from Job A trying to get to Job B. And then at two o’clock, I’m finally like, okay, I can sleep. But that alarm clock goes off at five o’clock the next morning. And it was that continual push every day, which is nuts, insane.
Intro 11:28
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 11:45
Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 12:08
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 12:28
I’m exhausted just hearing about it. They’re adults now. But there was just no way that I would have been able to get through like a year of that. So to paint the picture for me. First you’re single, then you meet somebody, then you get married. And there’s two people married with our kids. And then somehow down the track, you go from two people married with our kids, lots of time on your hands to do stuff to two people with kids and a shedule. That’s more relentless than the President’s shedule.
Kenya Robinson 13:15
Crazy and that was the weekdays on weekends, my boys played travel ball. So we’d be traveling up wherever whether it was in state out of state game started at eight in the morning. They just don’t play one game. Because if you win you play a second game, and if you win, you play a third game for the championship where you come back tomorrow. So the weekends were filled with sports and then just not attainable not attainable.
Bill Gasiamis 13:44
How old are the kids now?
Kenya Robinson 13:46
My oldest is 22. She just graduated from UCLA. That’s my daughter, my oldest son is getting ready to start his junior year of college and my youngest is about to start his senior year of high school.
Bill Gasiamis 14:05
So there’s a sounds like there’s a bit more space. They’re kind of more independent than they used to be.
Kenya Robinson 14:13
Definitely. And I’m grateful for that because it’s really given me the time to figure out how to manage my own recovering in this process. I did not give up the Jazzercise business I was told after the show, pick one business that you want to keep.
Kenya Robinson 14:32
And I chose to keep Jazzercise because it’s a fitness community of women that that exercise does more for mental health, physical health, total wellbeing. So it was important to me to keep that for the women. But then as I got further along in my recovery, it also became my rehab for getting stronger and improving on my I own. So I will always be thankful to Jazzercise for the program that they provide.
Bill Gasiamis 15:08
I mean, if you can be physically active after stroke, it’s one of the best things you can do to help recover and help heal your brain, even though it’s hard and maybe causes fatigue and causes all sorts of issues, perhaps the benefits definitely outweigh outweigh the negatives because I don’t think there’s any negatives unless you’re doing it in an unsafe way. And that means that you end up putting yourself at risk of falling or anything like that. So, you’re telling me, there’s no men coming to Jazzercise?
Kenya Robinson 15:42
We need men more who Jazzercise and I can tell you in my almost 15 years, there have been about five men who would come in and just dance. And it’s the time of their life like they do their own form of dancing to the movements. And then they really liked the strength part. And for the men who’ve come in and tried to go, wow, they really kicked my butt or wow, I didn’t realize it was so much fun. So I always encourage men to try Jazzercise. And now they’ve got an on demand program. So nobody has to know they can do it in secret if they like. But we’d like them to come out to our studios and try it.
Bill Gasiamis 16:27
It’s much more fun with the people around you with actual interactions and all that type of stuff. So what type of stroke did you experience?
Hemorrhagic Stroke And Deficits
Kenya Robinson 16:37
I had a hemorrhagic stroke. It brain bleed three centimeters on the left side, hemiparesis on the right side, aphasia, and just the weakness throughout, which is tough place to be tough place all the way down from my head to my toes.
Bill Gasiamis 17:07
Drape down the middle of your body.
Kenya Robinson 17:10
Absolutely. Yeah.
Bill Gasiamis 17:12
I know that one. very intimately. But in your little questionnaire that you answered, you also said you’ve had this evidence of ischemic strokes.
Kenya Robinson 17:26
Yes, so the stroke that I had October 1 in 2019, I thought was my first stroke. I found out year two, almost here to that it was actually my third stroke, not my first. The first two were ischemic. But they had they saw effects on my brain that I never knew about. But I did suffer from migraines in the past. And so the doctors said that that could have been during one of those migraines that this skin shrugs happen.
Pros And Cons Of Caffeine
Kenya Robinson 18:15
As the of the my migraines were horrible, like no light, nausea, no, like sound would feel like somebody was kicking my head with the steel toed boots. Awful, awful. I haven’t had migraines, my migraines were attributed to caffeine. So I’ve have a diet that does not have caffeine, and I haven’t had a migraine and maybe seven years.
Bill Gasiamis 18:46
Caffeine is a bit of a there’s so many benefits for people to have caffeine, you hear about it all the time. You know, caffeine is, you know, enhances your mood. It does this it does that but it’s a drug. And it can be used really badly. Especially if you use caffeine when you wake up and don’t allow your body to go through its regular wake up cycle. And And it’s also can be for some people irritating on the gut, and on the esophagus.
Bill Gasiamis 19:15
And it can cause gut issues like that. Caffeine also can keep people up at night if you have caffeine too late, right. And if you’re a stroke survivor, and you have caffeine at the wrong time, and then you can go to bed and sleep then it’s a terrible cycle because in the morning, you’re feeling really crappy. You need caffeine. And what the thing about caffeine that people don’t realize is actually doesn’t do anything for you. What it does is it gets rid of the signal that tells you that you’re tired.
Bill Gasiamis 19:46
This is just a quick break and we’ll be right back with the interview. Now imagine a life where the impossible becomes possible where the challenges of stroke recovery transform into a triumph and growth. This Is My Story and I’ve captured it all in my new book The Unexpected Way That A Stroke Became The Best Thing That Happened. I know firsthand, the emotional roller coaster of stroke recovery, the fear, the uncertainty, the frustration.
Bill Gasiamis 20:15
I’ve been there. And through my journey, I discovered that a stroke, while devastating, could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a roadmap not only to navigate your recovery, but to thrive in ways you never thought possible.
Bill Gasiamis 20:39
Are you ready to turn your challenges into opportunities to find strength in your struggles, while the unexpected way that a stroke became the best thing that happened is more than a book, it’s your companion on this journey, a source of inspiration and a testament to the power of the human spirit. To get your copy from Amazon today, follow the links in the YouTube description, or visit recoveryafterstroke.com/book to embark on a transformative journey towards a brighter and more empowered future.
Bill Gasiamis 21:12
Because the best chapters of your life are yet to be written. So you’re still tired, but the caffeine interferes with the signal and just pretend makes you feel like you’re not tired. So it’s such a false sense of energy or that I’m okay, you know, your body is screaming and saying, Hey, I’m actually really tired. And what you’re doing is you’re just giving this thing to stop telling you that it’s really tired, and you’re pretending that you’re not.
Bill Gasiamis 21:44
So for all the benefits that suppose that the caffeine has, for some people, the stroke survivors, I recommend that they, especially initially, after the stroke, that they stop drinking caffeine, and that they try and avoid it as much as possible. I’ll have caffeine now.
Bill Gasiamis 22:01
But I try to have it after. And I’m talking about coffee. For me, it’s coffee. So tea is fine. But the issue for me is definitely coffee for some reason. And if I do have a coffee, I’ll kind of try and have it two or three hours after I’ve woken up so that I’m already awake, and my body’s gone through the sleep cycle.
Bill Gasiamis 22:24
And I’m not relying on the caffeine. And that means that I’m a bit slower to get going in the morning, you know, I have to warm up to everything before I can really get going. But it definitely has made a difference in the way that I experienced my brain and the fatigue that used to come with tricking myself into thinking that I was awake when in fact my body was tired in the mornings.
Kenya Robinson 22:55
I can relate 100% I’ve never been a coffee drinker. For me, I like green marcha, which has the antioxidant and the it’s got a little bit of caffeine in the morning. I don’t mess with it any other time? Yeah, because I do not want the migraine life back. No thank you.
Bill Gasiamis 23:19
There enough, I get headaches these days, that are pretty annoying. And they do seem like migraines. Nobody has diagnosed them or anything. But light sensitivity becomes an issue. For that particular time that it’s happening. My neck gets all tight and my muscles on the back of my shoulders or get all tight.
Bill Gasiamis 23:40
Sounds are really difficult to handle some pitches on those days are really harder to to handle. And I’m not I’m not so nice to be around on those days. But it’s kind of made trying to get get through it. And they seem more regular than they used to be. It’s really annoying. There’s two or three days a month where I’m just I have a headache for three or four days. It’s annoying.
Kenya Robinson 24:13
That’s scary.
Bill Gasiamis 24:16
So how easy was it to leave the other business aside? What did you have to do to walk away from it? Was it something that you had to sell? What how did that go?
Kenya Robinson 24:30
I had contractors that were working for me at the time. And the way that business started I was gifted my clients. So I gifted. I paid for it and gifted my clients to the contractors who are working for me at the time and they’ve been able to do some wonderful things. So you know, in this life, sometimes it’s time to say goodbye. We’ll Dubai’s are hard. I liked I provided weapon administrative support.
Kenya Robinson 25:05
I like creating content, digital content. designing websites, like it makes your mind think in a certain way, because there’s certain programming that you go through, you know, and B, then it goes to C and D, which may go to M. And you know, and I was sad to say goodbye to that business. Probably a year, year, end of year one, year two, I decided to take on a freelancing assignment just to kind of see, what is my brain do with it?
Kenya Robinson 25:47
Is it able to handle it? Is it too much pressure? Does brain fog kick in? Does fatigue set in? How do we pace it so that we can walk away from it if we need to come back? I’m grateful for the fact that those qualities, the characteristics, I’m looking for the word, it’s not coming right now. They still exist, but not at the same quickness? Like sometimes it does take walking away from it and coming back.
Kenya Robinson 26:23
To be able to keep pushing not I don’t want to say pushing through, because I don’t like that we’re not pushing through anything. But to figure it out. And um, for figuring out, does it have to happen in that instance? No. Can it happen tomorrow? Yep. Can it happen next week? Sure. Can Can it happen next month? Yep. It doesn’t have to be in the moment like before.
Bill Gasiamis 26:50
That’s a big difference. Huge difference. I can relate to that as well. So writing the book, took my book, my book, I wrote a book, it took four years. Do you know about my book? No. Well, it’s a bit of a strange title I’ve got I’ve got it here. It’s called the unexpected way the stroke became the best thing that happened.
Kenya Robinson 27:13
Congratulations, I will be picking that up.
Bill Gasiamis 27:19
And the title came about because in the podcast, I had a conversation with a few people around episode 70. That person said, stroke was the best thing that happened to them. Clearly not at the time of the stroke, it was down the track or reflecting on how their life has evolved and changed. That’s what it became right. And same with me, that was my experience.
Bill Gasiamis 27:43
And writing the book was something that I had never done before. In my life, I was an academic, I never went to college, I never read a book pretty much until I was 37, maybe just a few of them. And got to the stage where I had a deadline. So I had somebody helping me to write the book. And it was supposed to take a year to write it.
Bill Gasiamis 28:10
And I did two years of research to get the information that I needed to get the book ready in my head and then a year to work with this person to get it out of my head and put it into pages. Well, the writing part, the actual writing part took two years. And the person helping me wasn’t that pleased with the fact that I extended the contract, you know, from 12 months to 24 months, because she didn’t get any extra.
Bill Gasiamis 28:39
She didn’t ask for anything extra. But there was just some days, when no matter what, nothing was gonna happen that day, I was not going to write a month went by I still hadn’t written. And it wasn’t from a lack of wanting, not wanting. Every time I wasn’t writing, I was thinking about I need to be writing I want to be writing. So it was just about the physical part of writing was not possible.
Bill Gasiamis 29:07
My head couldn’t turn the gears and the cogs in my head couldn’t turn at the rate that I needed to so that I can form a sentence or form a paragraph, etc. And it taught me that well, you just have to write when you get that window. however long that window is sometimes it was three days. Sometimes it was an entire month I got a like a second wind and a window of opportunity.
Bill Gasiamis 29:35
And I punched out as much writing as I could then and then I hadn’t written for two or three months and I would get an email going. How’s the book coming along? And it’d be like, I can’t explain it to you because you haven’t had a stroke and I don’t want you to ever know what it’s like.
Bill Gasiamis 29:53
But I haven’t done anything for three months. I’m very open and comfortable telling you I’ve done absolutely nothing in three months. And then it’s like. And then initially, it was me feeling bad about that. And then later, it’s like, you either like it or you don’t like it, you either accept that or you don’t accept that I can’t do anything about it. You know? It’s just how it is.
Kenya Robinson 30:15
Yeah. It’s kind of the unique thing that I think anyone who survives a stroke, understands and knows. I’ve tried to explain it to people who haven’t had a stroke. And it’s not that you can’t, but it’s like you can’t there’s a physical reaction within the body that says no. And I think you get that once your central nervous system approaches that period where it’s like, I’m scared. I don’t know what to do. So it shuts down certain parts of the body, certain parts of the mind. And if it doesn’t get that rest, it doesn’t allow you to produce. So I totally get that.
Bill Gasiamis 31:11
I get that. And, and the thing about it was that the some I was on somebody else’s timeline. And that was a big mistake, because that was not a motivator. Although that’s how she worked with every other client that she ever had. And it probably worked well, because it made her clients accept that deadline and work towards it. Whereas I couldn’t work towards if my life depended on it. I just couldn’t I had to I could not be on her deadline, because I wasn’t going to make it.
Kenya Robinson 31:45
Our lives do depend on it.
Young Person Stroke Survivor Getting Back To Jazzercise

Bill Gasiamis 31:47
Well, yeah, it depends on me not making that deadline. Because there’s no pushing through. For me, it’s a brick wall, you get to it. And then you have to rest to find a way around it. And pushing through was never going to work. So then you’ve slowly let go of one of the businesses and I imagine at the beginning, you’re not actually doing Jazzercise. You’re not back to that immediately. How long did it take you to get back to that?
Kenya Robinson 32:20
Awhile I’m, I want to say I had the stroke in October, I was released from outpatient, the following May or June. And they released me to begin teaching. That didn’t come right away. Probably by that October, November, I taught my first strength class. And even so that was a challenge.
Kenya Robinson 33:02
But in getting ready for it, I spent a lot of time in the floor. Let it and I always laugh about this, because anytime I talk about the floor, my memory is being back to rehab, and then dumping me out of my wheelchair and they’re like, Get up and I’m like, What are you talking about? You’re cool people, how dare you touch somebody who can’t move out of a wheelchair.
Kenya Robinson 33:26
And she got on my level. And she said, you may not always have someone to be with you, there may come a time that you’re alone, and you have a fall. And you need to know how to get up. Whether it’s getting to a couch, a chair of phone, you’ve got to take care of you. And I think that was an incredible lesson to teach when you’re kind of fragile, because it builds some strength in you to know that in a situation where you are. You don’t have what you need that you can get what you need to take care of you.
Kenya Robinson 34:10
So I took that and started all of my exercises in the floor. I would crawl because when you’re a baby you crawl and it helps you with balance. I did a lot of floor exercises. So when I taught strength, it would be from the floor to be able to get up and manage that balance. I did strength classes for probably a year and a half and then decided in 2023 that I would try the dance portion again.
Kenya Robinson 34:46
I think it’s okay. Does it look like it did before? Absolutely not. Is it getting there, I think for what it is now, I’d like to be able to do better. But I’m, I’m satisfied. But it took a lot like I’d spend nights just visualizing myself doing the movement. Or if I was in a car, I play the music repeatedly.
Kenya Robinson 35:24
Most of my customers seem to think that our class probably took what it would take an instructor normally to prepare, you know, maybe like the night before two days before, it actually would take me months to prepare one set, and then get into the mode of moving a song or two out or a new song in and having to play it for months, and rehearse it in my head, then rehearse it on the body, to where it felt more natural.
Kenya Robinson 35:55
The mirror has been so very helpful in correcting movements, because it gives my brain a chance to view what my body wants to do, even though my body does it one way, and my brain thinks that another when we teach classes we teach to the class. So my real, my left is actually my Jazzercise, right.
Kenya Robinson 36:23
So I’m killing the opposite. That has also been a play on the brain. But very helpful, I’m grateful for Jazzercise for so many reasons that it’s yeah, a lot very grateful, because it’s just help to just trigger trigger trigger in the mind to do different things.
Bill Gasiamis 36:48
Being able to be connected to your body is a big benefit. But as in having the skills, because of the work that you had done, previously in Jazzercise, already puts you a step ahead, because you have got neurons, and neuronal patterns and things firing in your brain that are connecting to your body more than most people.
Bill Gasiamis 37:28
Because if somebody is not as active, as you say, this identity and the majority of their time, they just spent sitting at a desk working for 15 years, instead of playing a sport or being physical in that way, you know, they’re having to rebuild all of those neuronal connections and structures from scratch, to try and just get back to basic level, whatever that level is for them.
Bill Gasiamis 37:58
Whereas you’ve got like that advantage from the beginning. And because of your deep work in that space, you can visualize and you can, you can translate what you’re seeing into a language that your body understands. And vice versa, you can take your body’s language, you can observe it, and then you can adjust it and then you can fix it. And you can do that.
Bill Gasiamis 38:28
That’s your skill. But that’s kind of what’s necessary for when you’ve got a body like ours, which is numb on one side and gives different feedback than the right side. So I’m born in June, so I’m a Gemini. So I now say that, you know, now I have the body of a Gemini, you know, one side completely different than the other side than our proper two personality kind of situation going on there.
Bill Gasiamis 38:58
And the best way to describe it to people so they understand. What it feels like to be me is that if I have an alcoholic drink, which I do from time to time, very rarely, but when we go out and it’s the right opportunity. My left side will get drunk immediately. While my right side is not. And recently, also experienced, nor recently often experienced in warm weather I experienced sweating on my left side but not on my right side. Interesting.
Kenya Robinson 39:36
Interesting. I have awareness with pain, the post stroke pain, got to be crazy. Learned how to calm things using the brain. But now things that should hurt, don’t. Like I go to the dentist and it’s like you’re probably gonna have pain for, nothing. I scratched or Bruce my hips never felt it. There’s bruising there, never felt it. And anything happens on the left side. I don’t feel I had surgery two days ago. No pain, there was little soreness yesterday, no pain.
Young Person Stroke Survivor Living With Altered Senses

Bill Gasiamis 40:31
Yeah, my wife will get in trouble because she will touch my hand gently. It’s really painful.
Kenya Robinson 40:42
My gosh, I can’t even sleep with sheets on the bed. Because to pull the sheet. Oh, that painful.
Bill Gasiamis 40:50
I have to sleep on my left side. So the sheet doesn’t touch my left side. So that squashed into the mattress so that it numbs the senses. So the senses don’t fire. And then my mum being just being herself, I’m standing in the way at her kitchen. She wants to walk past and I’m standing in her way. And there’s chitter chatter going and everyone’s talking and it’s loud.
Bill Gasiamis 41:19
And instead of saying, Can you move, she goes to pinch me on the butt, you know, just to make me move. And I can’t feel it this time, because when you do it hard, it doesn’t register. Like, like you said, like a punch would register on my right side. But on my left side, it kind of just registers like a push. Yeah. And she was pinching me and I wasn’t budging, or wasn’t moving at all.
Bill Gasiamis 41:45
And she’s going, can’t you feel me pinching you get out of the way. And I said to her, how long have you been pinching more, she goes too long. Get out of the way, look, sorry I can’t feel it I had no idea, you should have said can you please move. And it’s just like, the completely different parts of the body. So like I imagine, because I avoided physical exertion and exercise for a long time.
Bill Gasiamis 42:12
Because my thing is the gym. So I don’t mind going to the gym and just pushing the lightweight, just to get everything working and moving, etc. But I was afraid that if I go to the gym, I wouldn’t be able to judge my left hand, and it would let go or give way and then I’d be out of balance. And then I’d be struggling to lift the barbell or whatever. And I avoided it for many, many years, because I was afraid that I might drop a barbell and injure myself or somebody else, or, or dumbbell or something.
Bill Gasiamis 42:47
And recently, I went back and it’s and it’s that whole thing is not only do I have to pay attention to form and make sure I’m lifting carefully, just under normal circumstance, I’ve got to make sure that my left hand is in the correct position. It is capable of holding the weight that my right hand can definitely hold.
Bill Gasiamis 43:09
And that we’re getting an even movement so that I’m not putting, you know, pressure on one muscle group that I shouldn’t be or causing myself harm or something like that. getting my head around that has been a completely different experience than just like kind of coming to terms with my body through weights is again another level of learning and understanding that has just started that is going to take a while for me to get used to because I’ve got used to this weird version of my body all the other stuff. I’ve got used to it by now. But now throwing weights into the mix has started again, the learning again.
Kenya Robinson 43:55
It’s a whole other thing of balance.
Bill Gasiamis 44:01
So, in one way, that all the work that you did with Jazzercise, like is so beneficial not only for the things that you’ve already mentioned, but also the fact that you’ve just got way more going on in your head that’s around movement in particular directions, etc. That you’re, you’ve got that like advantage. I feel like it’s an advantage. Definitely.
Kenya Robinson 44:24
I agree. I definitely agree. It gave me something to hold on to that I know works. Because after the stroke, nothing felt like it worked on things that you know, easy things to do, like brushing your teeth and my right side is my dominant side. So how to to learn how to eat with my left hand. You know, it’s a lot of major changes but having Yeah, having that familiarity definitely gave me a starting point, or this is something I know.
Kenya Robinson 45:11
And even if it’s not the way I know it should look, we can start somewhere in practice. One of my physical therapists said, when we began that it takes three to 5000 times of doing something for to build one, Nora Graham. And that’s kind of how I’ve approached everything. Okay, we guide you through to practice in time. So let’s get busy locked in, let’s go. In this case, kind of, yeah, just been the approach. Let’s repeat, repeat, repeat, until it becomes something functional that we can accept.
Bill Gasiamis 45:47
How did they rectify the bleeding blood vessel in your head.
Kenya Robinson 45:54
I didn’t have to have surgery, they decided that they were just gonna watch it. And then I guess the blood kind of moves around the brain and absorbs. That became an issue again, when. So I mentioned earlier, the post straight shot pain was incredibly painful.
Kenya Robinson 46:18
And the therapists that dumped me on the floor in the wheelchair, recommended that I try aerial yoga, she brought someone to my home, who set up the apparatus, put me in the hammock and allow me to hang upside down. All the pain went away, my body did not know what to do with that. No pain upside down. talked to my doctor about it. And she’s like, you’ve had a hemorrhagic shock, you’re not supposed to be upside down on your head, I’m like, Look, I have no pain when I’m upside down.
Kenya Robinson 46:52
Like, the whole world should be in a hammock that like this is a beautiful thing. So she’s like, Alright, no more, maximum, two to four minutes upside down. But since I’ve started that, it’s changed my life, I could be in a huge flare, go upside down, nothing, bring then know what to do a bit. I’m happy the brain doesn’t know what to do with it. But that’s been another lifesaver. So it’s, sometimes you gotta get creative.
Bill Gasiamis 47:22
That is so interesting. So I know the doctor is going well, we don’t want to increase the blood pressure in your head, in case we create a situation where it might leak again. So I get that. Was there an underlying cause of why that blood vessel burst? Was it a faulty or malformed blood vessel? Or was it just that thing that people say is relaxed, you’re gonna pop a blood vessel, and that you actually popped a blood vessel?
Kenya Robinson 47:55
I don’t know. I do know that. When I got to the hospital. My blood pressure was off the charts. ridiculously high. But they’ve said the amount of stress that I was under at that time, could have led to that too, because I don’t have family history of shrug. Like, yeah, so this is kind of thing, I still would like to know that I’m still investigating.
Bill Gasiamis 48:27
And your blood pressure has returned to normal.
Kenya Robinson 48:31
Say it again?
Bill Gasiamis 48:32
Has your blood pressure returned to normal?
Kenya Robinson 48:34
Yeah. I was told that for the first five years, it has to be managed with medication. But if my numbers are good, then there will be a weaning off of sorts after the five years. So October 1, is that deadline for me.
Bill Gasiamis 48:54
Is there any other medication that you are required to take?
Kenya Robinson 48:58
The blood pressure is the only medication. The spasticity with the pain was bad, and I started baclofen then, but it’s been as needed. So I’ll take back live in before I teach a class and it tends to relax those muscles so that I can have a little bit more lyrical ability. So if I’m feeling tense, or I’m nervous, because sometimes you learn new routines, you want it to be fun and class doesn’t care, they just want to jump around and move in feel the excitement, but for us type A personalities, you know, we want to do it right.
Kenya Robinson 49:44
I can feel my body instantly start to lock and I’m like, okay, you know, now 45 minutes before class, I’m breathing, I’m meditating or I’m doing the breath work to get the muscles to settle down and I will use Bach loopback of in But time to kind of help with that. If I don’t have to use the medication I don’t. But I have found that that is definitely helpful with specificity because then I’ll be able to move a graceful arm rather than it’d be rigid. They’ll just flow. And that’s what we want. So, yeah, those are the only medications that I’m taking.
Developing Body Awareness For A Young Person Stroke Survivor
Bill Gasiamis 50:22
That’s pretty cool awareness though. Now stroke has done that to me, like it’s given me an insight into what your mood, your mind and the way that you’re speaking to yourself how it impacts the body, because the left side just responds, immediately, it gets tight, it’s tense. If I eat the wrong food, the left side gets weaker, it doesn’t respond so well to stimulus and all that kind of stuff.
Bill Gasiamis 50:52
So it’s all completely weird, like, so when I’m tired, you know, my left side goes to sleep, and it’s almost out out like a light and my right side, still pumping and going. But it’s telling my right side, hey, we need to rest and settle down. Yeah. And it’s a big indicator, it’s hard to it’s impossible to ignore, because you now have this complete system of information that says, Alright, you’ve got to stop, you gotta rest, you got to do less, or you got to change something.
Bill Gasiamis 51:33
So, what was family life like when you’re first diagnosed? Were you. I think what you said a bit earlier was that you’re in hospital for quite a number of time before you got home. Was that right?
Kenya Robinson 51:47
I spent six days in the hospital before they sent me to rehabilitation. I actually thought they were sending me to a nursing home. I was really sad because I was like, was my family going to leave me there. And when I got there, and they explained, you’re here to be able to learn how to function where your body is. So we want to be able to teach you some independence.
Kenya Robinson 52:17
And I was happy about that, because I was wheelchair bound. When I got to rehab, I was supposed to be there for three weeks to start. And I remember telling them no, I won’t be here for three weeks. My birthday is October 20. And I want to be done on the 19th. And they were like, yeah, it didn’t work like that. And I was like no, like, you have a plan for me. I plan to work it.
Kenya Robinson 52:49
I’d like to be out by the 19. And I was out by the 19th in a restaurant on the 20th celebrating my birthday. It just became in my mind like it’s go time whatever they ask, we’re going to do if they want to throw in extra, all these things, we’re going to have to remember Anessa the thing they hit me with when I went into rehab, she was she the nurse said yes.
Kenya Robinson 53:14
And you may suffer from aphasia. And with aphasia, you forget things you’ll be forgetful and I was like no, we’re not doing that. Like forgetfulness is a pet peeve. I don’t like that. And she was like, you have no control anymore. And I was like, No, we’re gonna have control. So day one, I was like, okay, chocolate chip cookies. Day two, the sky is blue. Okay, chocolate chip cookies, the sky is blue.
Kenya Robinson 53:42
So every day became something to remember from the previous day. And it became like this long thing of a habit. So that things didn’t get jumbled or scary. The fact that the words get jumped, that still happens, unfortunately, but the ability to figure out what it is. Now it’s a process of me slowing down, taking the time to think and if it doesn’t come out right away. That’s okay. I’ll find five or six other words of what I’m looking for before I finally get to it. That’s okay, too. So you play you know.
Bill Gasiamis 54:26
Take it as a game if you can and that I love that what you said about, you know, chocolate chip cookies, the sky is blue. Like, that’s just such a simple memory exercise might be hard for some people to get through. But it’s simple game to play, you know, and you could even attach that to a calendar. You know, you could even say Monday.
Bill Gasiamis 54:52
There was a chocolate chip cookie for lunch and then Tuesday, I went out and I looked up at the sky and the sky was blue like You can create a whole little sentence and thing that supports memory. And it’s just, you can do that, without any extra time or effort, you can do it sitting down, you know, you can do it, when you’re lying down in bed, you could do it at any time whatsoever.
Kenya Robinson 55:23
I’ve kept the practice at the start of the start of each year, I challenged myself to do something different. So this year, I bought a huge wall calendar that the from January to December, it sits on the wall, I’ve had trouble writing for the very longest. So in order to remember placing, at the end of each day, I’ll write down what I’ve successfully accomplished on a sticky note, and it goes up for that day. And I’ve kind of when I thought about doing this in, in January, it was for the piecing and the remembering.
Kenya Robinson 56:12
And then also, we need to celebrate the small successes. Because as you’re trying to get past all of the deficits of a stroke, you’re only thinking about where you have to go, you’re not thinking about how much you’ve achieved to get to where you are. So I figured it’d be a good way to mark that, too. So like, now we’re in July. And I have this, it’s very colorful of all these days of things that I feel like that done successfully.
Kenya Robinson 56:49
And that has been so helpful, even on the bad days to be able to look and say, Hey, you did some things well. And I’m i Yeah, I’m gonna have tears, I’m not gonna have to say the calendar has been extremely motivational and inspirational. My son walked in the other day, he’s like, wow, I think you’re the only person who can say you’ve known, you know, what you’ve done every day of this year, because it’s writing on the calendar.
Bill Gasiamis 57:23
It’s a visual journal, by the sound of it.
Kenya Robinson 57:27
It’s a visual journal, I love that, I think I might title it now, above at the very top that you can have.
Bill Gasiamis 57:37
Because I know, see, one of my big struggles with reading was that books are black and white, and bland, and there’s no pictures in them. And I don’t know how they take the pictures out of books, like even my book, I’ve written it and it hasn’t got pictures, but I don’t understand how we were taught to read, to read and see the picture in colors. So that we could have two visual representations of what that thing that we’re learning is about.
Bill Gasiamis 58:10
And then you get to a book as an adult, and it’s part of my friendship boring as batshit. It’s a real struggle, you know, to go into a book and not have because I’m a, I know that when people say I’m a visual learner, you’re not really a visual learner. But my preference is to visualize something to see it, then to read about it. And then to connect the two and to deeply embed that into my memory.
Bill Gasiamis 58:37
It’s much easier than to embed it when I’m just listening to it or just reading bland, black and white writing, text. So isn’t it interesting how we train kids to visualize these things to read and to connect the two and then we take that away from them. And I’ve never been good at journaling anything, I don’t journal or do anything like that. And I had to have people remind me of things.
Bill Gasiamis 59:06
But you record a video of yourself. And you watch that back. That’s that same thing. It’s the visualizing and seeing with your eyes, the whole picture, not just reading an in somebody’s interpretation of a doctor’s or my wife’s or my nurses or whoever it’s actually seeing, and I had a lot of I had a lot of times when I was at rehab trying to learn how to run and not for the sake of a marathon.
Bill Gasiamis 59:38
But just for the sake of because we went to outpatient rehab, and they said to me, what are some of your goals and I said, Look, I’d love to be able to run across the road just to get to safety if there’s a car coming or something. And I said okay, and he said Why haven’t you done it yet? And I was like, because I feel like when I run I run in a really bad form like a chicken and that would not be so I’ve to run across the road with you know, so he said, Well, why don’t I just record you running and you can see how you’re running.
Bill Gasiamis 1:00:09
And it was such a myth that I had created in my head because the feeling of my left side was so foreign to me. Although the form was very good, it was a ideal wasn’t perfect, but it was very good early on. I couldn’t, I couldn’t I couldn’t comprehend what my leg was telling me. So I had to see it. So that now I know, I’ve got a new language that my leg is providing for the same thing that I used to have, before that I was doing correct. And only visualizing and seeing was I convinced that I’m, in fact, them running in a good form.
Kenya Robinson 1:00:47
I love people who can run, like, I get that I yeah, I fully get that I was able to run in the first year, I have difficulty running now. So that’ll be something I know, right? You gotta, it’s the thing of you gotta keep at whatever you’re working at. And when you don’t work at it, you lose it. Running is actually a little bit of a fear of mine. And that’s why I’m going to attack that next.
Kenya Robinson 1:01:19
I don’t want to be afraid of anything. But I do have major concerns that I’ll be somewhere and we’ll need to get out quickly, and walk up and not be able to move. I don’t know if and when that day is coming. But I know that I want to do something to get prepared for if I need to move in a hurry is right now on the running, I’d love to be able to run.
Bill Gasiamis 1:01:50
There’s some crazy stroke survivors who might have foot drop, or they might have spasticity or something like that, and then they sign up for a damn marathon. And then somehow they get to train and they have this goal of completing a marathon, it might be a half marathon at the beginning of whatever. But I’ve interviewed some stroke survivors who just have overcome some really ridiculous obstacles to just run.
Bill Gasiamis 1:02:16
And to make it as difficult as it is for them to run with those conditions to still get to the other side of that marathon. You know, there’s a guy who follows me and I follow on Instagram, and, and A and T. Brian fitness. And he, he has foot drop and a limp or something like that. And his physical. Like, he trains people like he runs and does all that kind of stuff.
Bill Gasiamis 1:02:45
And he’s doing marathons and all this weird stuff. And then very early on in the I say weird because I just even when I was perfectly able to Oh would never run a marathon. Just I don’t see the point. But that’s just me, right. But maybe at the beginning of the podcast series, like very early on thinking, maybe back down to like, episode, where is it? Let me see if I can find it.
Bill Gasiamis 1:03:12
Episode 28. You know, Donna Campisi, she goes for. She’s had a stroke when she was a child. And in her 40s decided that she was going to run a marathon and she has foot drop and all that kind of stuff. And she talks about how she struggled and struggled and somehow got some training and everything and they completed 40 kilometers, it took forever, but they completed it.
Young Person Stroke Survivor: Running After The Stroke
Bill Gasiamis 1:03:36
And I’m gonna just what I’m trying to say is like, it’s possible. And whenever you get your head around that, and whenever you got the time for it, you know, just put yourself in that space of okay, let’s do the visual to your visual calendar. I ran one meter. I ran five meters today and I ran 10 meters and might get it better.
Kenya Robinson 1:04:05
I didn’t even enjoy running before the stroke. I know. I admire people who are like, Yeah, I run it releases stress, like no, my legs get to burn and no, thank you. But I feel like you’re challenging me. So maybe.
Bill Gasiamis 1:04:21
I am.
Kenya Robinson 1:04:22
Okay.
Bill Gasiamis 1:04:24
It’s a gentle challenge, there’s no timeline on it. It’s a seed, just planted the seed. That’s all I’m doing.
Kenya Robinson 1:04:34
I like the seed. I may take you up on that moment, and I’ll let you know.
Bill Gasiamis 1:04:39
And then it’s like, Oh, my God, I didn’t know that I could possibly run. Look at me. I’m running now. Oh my God, I identified as a runner, you know? And that’s it, right? You identify something new and you add another thing to your toolbox. And you did it in spite of all of the difficulties.
Kenya Robinson 1:05:00
Totally, because right now walking feels like stepping on Legos every day. I can’t imagine.
Bill Gasiamis 1:05:06
Thank you for describing it like that because that’s how it feels for me the left side. It’s like walking on Legos. Yes that’s such a great description. I go to the beach with my running shoes on. I never go into the water without shoes. Yeah, so you know, you’ve got a pair that always kind of needs to be thrown out, but you love them, you can’t throw them out. Because they got holes on it. Well, I keep them for the beach.
Kenya Robinson 1:05:38
Shoes are weird because my foot is still changing. So like there could be a pair last month that I absolutely could not work because they were painful. But didn’t they’ll be the most comfortable shoes ever. And then when they get uncomfortable, I’m like, okay, the foots changing again. So I’m I’m kind of playing now with some research regarding circulate Circulus circulation, sorry, circulation on the affected side.
Kenya Robinson 1:06:07
And how that relates to the Lego filling in the foot. Because I definitely have to drop, I work really hard at trying to get that exercise up. There’s a repetitive exercise that I do every single day, multiple times during the day doesn’t change the feeling, but it changes how far the toes come off the ground in that role through the foot because through the ball of my foot. I can’t fill.
Kenya Robinson 1:06:37
And then the there’s trickiness, because there’s no depth perception, especially with dancing, because I’m like, I don’t know how far I can actually go because it can’t feel it. And so there’s a little bit of play in the brain. But yeah, that Lego filling was crazy. But the research so far that I’ve been doing with circulation, and and getting the blood to really kind of pomp on the affected side has had some great benefits in the Blitz. So trying to see who I can work with to record this and share it and hopefully have it be helpful for having people who have Lego sensation, that’s what I call it.
Bill Gasiamis 1:07:25
That’s, I’m gonna start using that because I struggled to explain it to people, you know, I say, you know, if, if I stepped on a pebble with my right foot, I just know that there’s a pebble there. But if I step on the pebble with my left foot, it feels like there’s like a boulder there. And it’s just digging into every part of my foot.
Bill Gasiamis 1:07:43
And it’s really painful and uncomfortable. And it could make me trip over and it’s literally a pebble and it could be very small in size. But it could unsettle me and make me lose balance and fall over. Especially when I’m at the beach and the waves come through, right and at the same time you step on something that makes it feel like it’s sharp.
Kenya Robinson 1:08:07
It changes how you perceive things with walking, which is something that everybody has the right to, but it’s very different. And especially with the beach, got the waves rolling through, you got the feeling of the sand, but that grainy filling under the affected foot becomes a different story than it does to what we’re accustomed to.
Bill Gasiamis 1:08:35
A million pins and needles being pushed into the foot. I prefer now to use boots, slip on boots. So most of the time, if I can, I’ll just wear slip on boots because they kind of wrap the heel up and kind of protect it and keep it nice and warm and comfortable and safe. And then the shoe laces don’t dig into the top of my foot. And they just, you know, it’s just it’s a more comforting.
Kenya Robinson 1:09:10
People are like, why do you have boots on during the summer? I’m like, you have no idea, they’re comfortable.
Bill Gasiamis 1:09:17
And in winter, I could do the Michael Jackson and wear one glove on my left hand only. Just because it gets cold. Really, really cold on my left side.
Bill Gasiamis 1:09:28
Does cold lock you up?
Bill Gasiamis 1:09:30
It kind of makes me less sort of fluid, fluent, or free or whatever. Nobody would know but it feels stranger. It tenses the muscles and all that kind of stuff. And it burns the cold burns. And it becomes just like excruciating. And then it feels like the bones in my left hand. It feels like they’re frozen. You know, frozen came out of the refrigerator. They’re there, and they’re just solid.
Bill Gasiamis 1:10:01
So it’s that cold, and I can’t warm it up, I’ll get one glove and I’ll wear one glove. And I’ll try and just protect it a little more. Yeah, I like that. Yeah. And you know, you could you could be dazzled, you could put jewels on it and whatever. And you could make it like a proper Michael Jackson hand. And our generation would get it, at least the young ones would think what we eat, but we’d get it’s okay.
Kenya Robinson 1:10:36
To be special, yes, we do.
Bill Gasiamis 1:10:38
We went on a bit of a tangent, but I was asking you about your kids in the family, and how they manage all of your illness in your hospital, stay out of the kid, kids cope with all of that what was going on for them.
Kenya Robinson 1:10:57
My kids are very supportive, extremely supportive. Anything that I brought home to try and do, they engaged me. I know, when I first got home after rehab, I didn’t want to roll through the house in the wheelchair. So I scooted from room to room.
Kenya Robinson 1:11:21
And I would help with chores. So they would do laundry, and we’d sit on the floor, and I had attempt to fold it. When it was time to do dinner, they got down to the lower areas and would pull out what I needed. And then on one foot, I would try and put dinner together. And they would help. When it came to practicing walking, we had a long hallway.
Kenya Robinson 1:11:48
And so I would try and walk in, they would clap and cheer me on those days were really funny because that walk list. Walking, when you have to learn to walk again, it’s it’s comedy. But just extremely, extremely supportive. It got to a point that as soon as I felt like they were in a comfortable space, I know that I begin to kind of isolate and hide, just wanting them not to see.
Kenya Robinson 1:12:26
But just to feel like they had the sense that everything was okay. Not the right way to handle things. But when you’re in it, you don’t know, because you’re trying to cope, and you’re trying to make sure that that the people around you don’t have the fear from your trauma.
Kenya Robinson 1:12:47
My kids have since talked about that time. And I’m really grateful to have that information. Because I don’t know what it’s like to have been in their shoes. I know what it’s like to have been in my shoes. But I think that there has to be a conversation between both sides to have effective communication so that everybody is okay.
Bill Gasiamis 1:13:14
And you thought that you’re going to hide your condition from them. There’s no way you can hide it from anybody let alone your kids who know you intimately.
Kenya Robinson 1:13:25
Very much so in my mind, I thought if I could build good concepts of what was going on, and then suffer behind a closed door. Everything would be fine, because nobody went no vomiting, pain or mumps or even that part i If I could go back and do something differently, I would go back into that part. Because it becomes, the more that that’s practice, the more that that feels comfortable. So even now, in year five, I have to resist wanting to isolate, even though it feels very comfortable to be in that spot. It’s not a good thing for anyone.
Bill Gasiamis 1:14:12
I can relate to that. You’re also setting a bad example of how one should go about recovery, you know, teaching them that if they go through something later on in their life, that they should not tell anybody about it or keep it to themselves and pretend that everything is okay. Which ultimately is not because then they’re not receiving the assistance, the help the emotional, the mental health, the physical health that they might need.
Bill Gasiamis 1:14:40
And now you’re actually setting an amazing example, you know, that the visual diary that you’ve got on the wall there, I mean, that is another beautiful thing that they get to see all the time that tells them that this is how you can track once progress going forward. So if you ever get stuck, whether it’s a physical project or a personal project, or it’s a book project and you want to know how far you’ve got here, here’s a way that you can do that. That’s a such an amazing tool, you know, for them to see you put in place so that you can track things.
Kenya Robinson 1:15:26
Thank you.
The Hardest Thing About Being A Young Person Stroke Survivor
Bill Gasiamis 1:15:29
Tell me about what the hardest thing about stroke is for you.
Kenya Robinson 1:15:37
Okay, the first thing about stroke really from me was the pain of things coming. I call them when you’re frozen. Like for me, I felt frozen after my stroke. So when things would thaw it was most painful before it felt better. I can remember the first part to unthaw was my ribs. And when you have that weakened sensation, it’s almost like you can feel what your bones way.
Kenya Robinson 1:16:21
That’s how heavy it becomes. And when the ribs became alive, that was five and a half months of the worst pain of my life. Because you never know how long it’s gonna last, it just hurts. My back came alive. Eight and a half months of and I have a high tolerance for I really have a high tolerance for pain now, but I had a high tolerance for pain then.
Kenya Robinson 1:16:51
But I mean, we’re talking about liver like on a scale of one to 10 I’d be like 21 Like, I don’t know these, you can rate this. And I was doing that with no pain meds, just suffering through. But post stroke pain has been was the hardest thing for me. I was talking to a girlfriend who was told me about a pain clinic that she’d gone to. And as soon as we stopped talking, I called my doctor and I’m like, does this exist and she goes, Yes, and I’ll write yours now.
Kenya Robinson 1:17:26
And it was a 40 hour class, but you couldn’t get in the class until you were evaluated by their team, which included a physical therapist, a psychiatrist, and then a physical medicine doctor. So it was multiple appointments with them, because they want to make sure that you’re not trying to take your life that you’re in a healthy place to do this because you’re in pain, and it doesn’t turn off, you can’t get it to stop. And then after their evaluations, then you get to start the 40 hour course.
Kenya Robinson 1:18:03
So everybody in the room is having extreme pain. And at first I was like we’re all going to bite. I don’t know, I thought that we’re going to take on one another’s pain. But it really wasn’t that at all. They took us through looking at activities during the day, what we’re doing, how we’re doing it, how we’re communicating with people, like stressful when you come up against someone we don’t communicate well, your receptors go up in spike your pain, how to deal with that.
Kenya Robinson 1:18:38
And then different ways and forms of communicating so that you stay safe breathwork meditation I will always swear by that I had a person go Oh, you’re going to tell me I’m going to breathe my way to feeling better. Yes, it works. Especially when you take the time to learn how to do it. Sleep hygiene. Number one a benefit to helping pain so when you’re able to have four tools and resources of things that you can draw on to bring it down. Life changing
The Lessons From The Stroke From A Young Person Stroke Survivor
Bill Gasiamis 1:19:25
What has stroke taught you?
Kenya Robinson 1:19:31
What has stroke me? It does not all have to be done today. No really stroke has taught me how to pace my life and actually enjoy life. I don’t know that I enjoy life before the stroke. There’s part of me that will tell you I didn’t enjoy life recovering from stroke. But putting different tools in order to really figure out how to manage this, and live with it and not see as a consequence, has really changed my perspective a lot.
Bill Gasiamis 1:20:28
What would you say to somebody who’s listening in and maybe they’re very early on in their journey? What advice might you offer?
Young Person Stroke Survivor: Grace After A Stroke
Kenya Robinson 1:20:43
The number one thing I think is you have to give yourself grace. It’s a new period, it’s a new time of learning who you are. And that disk, the self discovery in that process is extremely important. You’ll get a lot of information, whether you take that from health professionals, your family, I always say find your stroke family first, because we get it like nobody else gets it, like, find your stroke family, click on say, hi, if they don’t answer, don’t worry about it, move on to the next person, somebody will reach out to you to help you figure these things out. I think that’s, that’s huge.
Kenya Robinson 1:21:32
And then because all of our strokes are different, take the things that that bring you joy, take the things that you find that bring you happiness, and diet is extremely important. And rest is extremely important. And I think when you begin to incorporate those things in your life, and you find the repetitiveness of a beginning schedule of things that you do during the day, then you just work to improve upon that.
Kenya Robinson 1:22:04
Based on what you feel successful. And it’s good to stay in a positive place. It’s okay to have bad days. So Kate cry, you become, I think stroke makes every makes you hyper aware of your feelings. I cry way more than I ever cried, and I hate that. But I find if I get it out, then I feel incredibly I feel so much better afterwards. So there’ll be some terrible days. You got to scream and yell just do it.
Kenya Robinson 1:22:38
Folks around you will get used to it. You do the things that make you better but most of all, you’ve got to give yourself grace. It’s not easy. And it’s it’s there’s it’s hard. It just is it’s hard but it gets better. It gets better and celebrate the small successes. No matter how small you woke up in the morning, celebrate it.
Kenya Robinson 1:23:00
You went to bed on time, the night before celebrate it, your favorite TV shows coming out celebrating. We’re celebrating all ever celebrate everything because celebration feels good. It feels good in the soul. So do things that make you feel good in your soul. And if you don’t if you wonder what that is call me we’ll talk about it we’ll find good things in your soul.
Bill Gasiamis 1:23:23
And, on that note, thank you so much for joining me on the podcast. I really appreciate it.
Kenya Robinson 1:23:27
Thank you, Bill. I appreciate talking to you it’s been a great conversation. Thank you.
Bill Gasiamis 1:23:33
Yeah, had a lot of fun too. Thanks. Well, that’s it for another episode of the podcast. Remember, if you’re interested in my book about stroke recovery, you can grab your copy on Amazon by typing my name Bill Gasiamis into the search bar, or by heading over to recoveryafterstroke.com/book.
Bill Gasiamis 1:23:51
If you want to know more about my amazing guests visit recoveryafterstroke.com/episodes and find their social media links and download a full transcript of that entire interview. A huge thank you to everyone who has left a review it means the world to me your feedback is crucial for the podcast success, helping others find this valuable content and hopefully making their stroke recovery journey a little bit easier.
Bill Gasiamis 1:24:19
If you haven’t left a review, please consider giving a five-star rating and sharing what the show means to you on iTunes and Spotify. For those watching on YouTube, remember to leave a comment below, like the episode and subscribe to the show on the platform of your choice to get notifications of future episodes. And if you are a stroke survivor with a story to share and now is the perfect time to join me on the show.
Bill Gasiamis 1:24:45
The interviews are unscripted and require no preparation. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show Simply visit recoveryafterstroke.com/contact, fill out the form with your category and I’ll get back to you with details on how we can connect via Zoom. Thanks once again for being here and listening Your support means everything to me. See you on the next episode
Intro 1:25:22
importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The 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 at 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 1:25:52
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 1:26:16
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 medical information changes constantly.
Intro 1:26:43
While we aim to provide current quality information in our content. We did 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 Young Stroke Survivor’s Inspiring Recovery Story – Kenya Robinson appeared first on Recovery After Stroke.
1 hr 28 min
July 30, 2024 Young Stroke Survivor Neetu’s Ischemic Stroke at 44: A Powerful Story of Recovery and Resilience
Watch young stroke survivor Neetu Mehra’s inspiring journey from ischemic stroke at 44 to resilience and recovery. Click to hear her powerful story!
Instagram
Highlights:
01:27 Introduction
02:41 The Beginning Of A Young Stroke Survivor’s Journey
14:31 Young Stroke Survivor’s Medical Journey And Impact On Daily Life
24:23 Stroke Recovery Timelines
32:20 Struggling With Meditations And Post-Stroke Deficits
45:01 Mental And Emotional Recovery
50:46 Finding Purpose After A Stroke
59:38 The Hardest Thing About Stroke
1:01:27 The Lessons From The Stroke
1:05:57 Advice From One Stroke Survivor To Another
Transcript:
Bill Gasiamis 0:00
Hey everyone. Before we dive into today’s episode, I have something truly important to share. In Episode 305, I had the pleasure of interviewing Catherine Randabel, the brilliant mind behind HeadBed. This product is revolutionizing hair salons especially for young stroke survivors.
Bill Gasiamis 0:18
Imagine going to the salon and worrying about the risk of another stroke because of neck strain during a simple hair wash. It’s a fear that many stroke survivors live with. And HeadBed was created to address this very concerned offering peace of mind and safety.
Bill Gasiamis 0:37
With proper neck and head support, you can relax knowing your health is being looked after reducing the risk of arterial damage and the anxiety that comes with it. Now I’m passionate about stroke prevention and safety, which is why I’m excited to support HeadBed. Catherine explained how it’s designed prevents dangerous neck hyperextension a common issue that can increase stroke risk.
Bill Gasiamis 1:02
HeadBed means that you can finally enjoy a trip to the salon without fear. If you’re a stroke survivor or know someone who is HeadBed is a game changer. Don’t let the fear of neck strain and stroke keep you from enjoying a salon visit. Be sure to check out episode 305 for my full interview with Catherine and discover how this product can provide the reassurance you need.
Introduction – Young Stroke Survivor Neetu Mehra

Bill Gasiamis 1:27
For our listeners in the United States. Visit headbedusa.com to get yours today and feel safe during your cell on visits. Welcome to Episode 314 of the recovery after stroke podcast today, we have an inspiring story of resilience and determination as we chat with Neetu Mehra.
Bill Gasiamis 1:48
At the age of 44 need to experience an ischemic stroke despite leading a healthy lifestyle. Her journey began with a sudden and unexpected symptom, leading to a 12 hour ordeal before receiving medical attention. Join us as Anita shares her incredible recovery story from dealing with paralysis and multiple blood clots to making significant progress in her physiotherapy and occupational therapy.
Bill Gasiamis 2:14
This episode is a testament to the power of perseverance, the importance of support from loved ones and the never ending hope for recovery. Let’s dive into Neetu’s story and learn how she navigates the challenges and triumphs of stroke recovery. Neetu Mehra welcome to the podcast.
Neetu Mehra 2:33
Hi, Bill. Thank you.
Bill Gasiamis 2:35
Thank you for being here. Tell me a little bit about what happened to you.
The Beginning Of A Young Stroke Survivor’s Journey
Neetu Mehra 2:41
So I had an ischemic stroke. I’m 44 years old, otherwise pretty healthy and fit. Like I took care of myself workout, practice yoga, go for walks. I had a pretty healthy lifestyle in terms of like eating habits and stuff. I have no metabolic risk factors. And I hadn’t machine next stroke.
Bill Gasiamis 3:05
That was just a few months ago.
Neetu Mehra 3:07
This was in February. Yeah, five months ago.
Bill Gasiamis 3:11
On the day of the stroke, were there any signs or symptoms anything before the stroke that kind of gave you some sort of an idea that things were not right, or there was a couple of issues happening?
Neetu Mehra 3:22
Yeah, so the night before this joke, I was getting my things ready for like clothes ready for work the next day. And I noticed that I was seeing stars from my left eye. Only from my left eye. I saw like a cloud of stars for me. And I thought that was a bit odd. I’ve had visual issues in the past, but nothing quite like that. And I just thought, Okay, if it persists in the morning, then I’ll go to emergency. There’s like an eye clinic. So I thought it was an eye issue maybe. And then I woke up the next morning, the day of my stroke and I am mean who knows maybe I was having a stroke in the middle of the night.
Neetu Mehra 4:06
And then when I woke up the next day, I was like, you know, open my blinds as usual. I got out of the bed, went to get ready. To me like it was nothing, everything was fine. I could see I wasn’t seeing the stars that I saw from the night before. So I thought okay, that’s fine. No need to address whatever issue was happening.
Neetu Mehra 4:28
And then I went to get ready. And as I was getting ready. I was supposed to be at a work conference for 9:30 in the morning. And my manager called me saying hey, we started an hour ago, where are you? And I thought there’s no way it’s not even 8am yet. Because in my mind, I had no concept of time. Like I thought I was going to be there on time. And and I was like getting ready and then after I spoke back to her I said okay, I didn’t realized the time.
Neetu Mehra 5:01
And I said something and I realized that I slurred my words. So at that point, I thought, okay, that’s really weird. I sound like a drunk or something. And it’s first thing in the morning, sounded really odd. When we hung up the phone, she texted me saying it was hard to understand what I was saying. So I texted her back with a very well put together a text saying, my stomach hurts, my head hurts, but I’m coming.
Neetu Mehra 5:23
Like my intention was to drive over. And then I actually was able to take a shower fine. And then I got out of the shower and put it in my contact lenses. My right one went in fine. My loved one, it took me like three attempts. And it was really hard to open the packet as well.
Neetu Mehra 5:40
And I realized that something was wrong, like my fingers seemed a little off. So on the third attempt, I think I got it in. I also felt extremely tired. I don’t know why, like extreme fatigue, like I just had to lie down and I have low blood pressure. So I thought maybe I just need to like lie down. But I didn’t want to lie down in bed because I was determined to get to the work conference.
Neetu Mehra 6:04
So I thought, Okay, let me just lie down on the floor. I live in a condo by myself. So I, I went and I lay down on the hardwood floor after getting out the shower. I hadn’t put my clothes on yet. And I left my phone in the bathroom. So I actually left it, I completely forgot it there. And I was laying on the floor for quite a long time. When I realized a lot of time was passing, I thought okay, it’s I should probably try to try getting myself up, get ready and go.
Neetu Mehra 6:35
And I thought, okay, if only I can just turn over onto my hands and knees. I know I can push myself up because I’m physically strong enough. I workout and stuff. So I’m like, I know my strength and my physical abilities. And I was laying there and I thought, Okay, this is so bizarre, how come I can’t and I tried to reach up with my arm, my right my good arm. And I wasn’t able to get myself up.
Neetu Mehra 6:58
And by that time, lots of time had passed. And at one point I realized that I can’t do this on my own, I need help getting up. So it just crossed my mind like who do I call? And how do I call them because my phone is not with me. And then hours had passed in. During that time my manager had called me texted me and I never responded to her because my phone wasn’t near me.
Neetu Mehra 7:19
So she had reached out to my emergency contact, which was my mom. And then she was not able to connect with her it went to voicemail. So then she decided not to leave a message in case my parents were traveling. And then hours had passed and the day had gone by and I realized that it was getting dark out. So I was like, okay, lots of time has passed. Now. I just wanted to stay awake and keep myself awake.
Neetu Mehra 7:47
So mentally, I’m just thinking like, what’s going on? In my mind that crossed my mind at one point, I’m like, maybe it’s a stroke because I slurred my words. But I didn’t quite remember all the other signs of the stroke. I wasn’t really as aware of it at the time. Now I know, at the time had no idea. So then, the evening came and HR called my mom saying that I didn’t show up to work.
Neetu Mehra 8:12
So obviously my mom was panicking. So she’s calling my friends. They’re calling me and obviously I’m not responding. And then they called the condo building and the security checked in they saw that my car was in the parking spot. And they knocked on my door and they’re not allowed to answer the they’re not allowed to go into the side the door without paramedics or cops with them.
Neetu Mehra 8:35
And I heard them knocking but I was lying down in my bedroom, which was like the exact opposite corner so it’s too far away from them from the door so they wouldn’t be able to hear me my voice is quiet normally and it was even more quiet that day. So then, you know my parents, I think my mom knew something was off. So they got into the car. My parents came to the condo and they called 911. So the paramedics came, and the condo security opens the door for when the paramedics came. So I was lying on the floor, and thankfully, I was still cautious and talking over 12 hours had passed by this time.
Bill Gasiamis 9:17
Without any clothes?
Bill Gasiamis 9:20
Without any clothes on the hardwood floor. Yeah, for 12 hours and mentally I was just trying to stay awake. I didn’t. I knew something was off. I didn’t know what it was.
Bill Gasiamis 9:32
Were you aware that you were not clothed? Okay, you’re aware of that but didn’t really bother you didn’t seem to be an issue that there was no clothes on. You were just trying to stay awake so that you could remain conscious. Were you afraid that if you fell asleep you wouldn’t wake up? Was there something like that happening at all?
Neetu Mehra 9:55
I didn’t quite get to that thought but now that I think about it, I definitely I think that I don’t know that I would have made it if I would have fallen asleep. Just mentally, I thought, Okay, I have to get to this work thing. So I need to stay awake, then I need to get up.
Bill Gasiamis 10:11
Yeah, get used to the hospital. Well, before I go there, I can relate to what you’re saying about time. So when I came out of hospital after my second bleed, time, sort of stopped to exist as we know it, there was no actual four hours, or it took three hours. But I do remember I tried to type an email once, thinking that I was doing a really great job and being at my desk for the entire day.
Bill Gasiamis 10:40
And, and having only managed to put out a few lines. And I think not even send that email across. I didn’t even know I don’t even know if I managed to get it out. But there was no concept of hours or minutes or anything like that. It was just nothing. A long time, there was just a long stretches of time.
Bill Gasiamis 11:05
And I couldn’t grasp how long. And I knew from what other people were doing around me that it was time to go home, for example, because everybody else was going home. That was kind of the aftermath of the second blade when it was impacting a whole bunch of other things for me, so I kind of understand what your state was like. So they’ve come in, and they’ve assist you immediately and taking you to hospital. What happened after that?
Neetu Mehra 11:41
So they came in, the paramedic brought a towel for my bathroom, and then helped me put some clothes on. And then they were deciding which hospitals to take me to, and they took me to the stroke Hospital in Toronto. And then when I got there, it was a little bit foggy, like, their ambulance ride there was a little bit foggy.
Neetu Mehra 12:03
But when I got there, I was coherent again, and someone came in and was like, we’re gonna do this procedure on you, you had a stroke, you have some blood clots in your head, she asked me to sign a piece of paper to do a thrombectomy, where they go in through like your artery to suck up the blood clot. And so I asked him the success rate, I was like, what is the success rate? And they said, 85%.
Neetu Mehra 12:27
So I was coherent enough to ask intelligent questions, which was good. And then I signed it, and they did their procedure. And I think they only have to partially sedated me, because I could hear what they were saying. And I heard them say like, they went up in there, and they said, oh, there’s second clot. So there was two blood clots in my head. And after that, I just felt like a massive, like I already had a bad headache, but it was a worse headache. So the one of the blood clots burst, then it was a bleed.
Bill Gasiamis 13:02
So the blood vessel was then bleeding?
Neetu Mehra 13:06
Yes, the blood clot was bleeding. So then I had a massive bleed in my head. And then I had an arterial dissection as well. So the artery dissected.
Bill Gasiamis 13:20
You got the whole package, my gosh.
Intro 13:27
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 13:51
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition, and they’ll help you take a more active role in your recovery. Head to the website now recoveryafterstroke.com and download the guide. It’s free.
Young Stroke Survivor’s Medical Journey And Impact On Daily Life

Bill Gasiamis 14:31
You’re coherent enough to hear all of that stuff they did they say there’s a bleed or did they give you the type of information or was that kept?
Neetu Mehra 14:41
Not at the moment like I didn’t hear that part. I just felt a massive headache like the pain and I was like for days I was in the intensive care unit at the hospital for like nine days. And I was in so much pain and I was getting bags of ice for my head. It was just so painful.
Bill Gasiamis 15:04
And then what was recovery like? How long did you stay in hospital?
Neetu Mehra 15:08
So I was in the intensive care for about just over a week. Now I went to acute care for three weeks to a different hospital. And that’s where they did tons of tests and scans and everything. They’re checking my body inside and out, because I have no risk factors made no sense at all.
Bill Gasiamis 15:28
And they were trying to work out the cause of clots. Yes,
Neetu Mehra 15:33
they have found more clots in my body. They found a clot in my kidney and two and my lungs. They’re trying to figure out what came first. And second. They think perhaps it could have been like a clot that broke into a cluster of clots and spread through my body and went to my head.
Bill Gasiamis 15:52
Having been reunited or formed elsewhere first not necessarily created or formed in your head.
Neetu Mehra 16:00
Yep. And they think the two clots in my lungs could have been from laying in bed for a week after the initial clots. So I’ve been tested for clotting disorders and everything, but I’ve tested negative for everything. Well, yeah, so they still don’t know the source of the cause. Yeah, they kept me and I felt like a science experiment. They just kept me in there and I kept going. You MRIs and scans and and other tests.
Bill Gasiamis 16:32
Tell me about your life before stroke. What kind of work did you do? How did you occupy your time?
Neetu Mehra 16:39
I work in marketing for a bank. But I think I was doing a pretty good job of managing like work life balance, like work projects, and I wasn’t overly stressed. Like I think life was pretty good before this. Yeah, so I had work life balance. I was very focused on like, my health, and exercise and things like that. So I was working out all the time, practicing yoga, going for walks outside, eating healthy nonsmoker. I had a good balance of like, spending time with family and friends and life was pretty good. I traveled a lot to
Bill Gasiamis 17:19
work. No, just for fun. For fun. Okay, for fun. Yeah. Okay. So you’re pretty active. Everything was a ok. Yep. Yeah. Yeah, now, and now things are quite different. So how, how do you go about your day? Now? What level of activity Are you back to, if any.
Neetu Mehra 17:43
So basically, I have left side paralysis. So what I impacted. So while I was in the hospital, I was basically in bed the whole time. I went, I started rehabilitation, I went to rehab hospital for two months after that for about like, almost eight weeks. So then I spent like a total of three months in like hospitals and care. And the rehab hospital was good, because it got me moving.
Neetu Mehra 18:08
And I, you know, getting up and doing physiotherapy and occupational therapy. And I still go there for occupy outpatient therapy, which is great. So now I’m able to walk with a cane, which is great. My left arm and left hand is not functional at all. I can move it a little bit, but not too much. So I’m still working hard every day. I’m doing exercises at home.
Neetu Mehra 18:34
So I wasn’t able to go back to my condo and live there because I need help with a lot of things. So I, my parents and my brothers worked hard to have some renovations done to the house so I could move in with my parents again. They’re elderly too. So it’s like, I thought I would be the one coming to take care of them. But they’re taking care of me now.
Bill Gasiamis 18:55
Yeah. How old are you parents?
Neetu Mehra 18:58
They’re in their 70s 75 and 78.
Bill Gasiamis 19:04
Are they feeling well?
Neetu Mehra 19:07
They’re feeling okay. I mean, they’re tired all the time. Got a lot going on.
Bill Gasiamis 19:15
My parents are similar age, my mom’s 78 And my dad’s 82. And I can’t imagine them being able to cope with firstly, their child is unwell. That was a big issue, and then they’re just not as fit and active as they used to be. So it’s always going to be difficult.
Bill Gasiamis 19:45
And they more than anything, want you to get better. So they’re gonna put all their effort in as much as they possibly can to get you better. And they’re probably not even thinking about it by him. Imagine you are thinking about it you are, it does cross your mind that you’re in the situation that you’re in and that they have to do what they’re doing. Is it something that you have to grapple with?
Neetu Mehra 20:13
Yeah, I mean, I think about it must be so hard for them. In the fact that they’re older, they’re not in the best shape either. It’s definitely exhausting.
Bill Gasiamis 20:25
Yeah. How old were you at the time?
Neetu Mehra 20:30
Of the stroke? 44.
Bill Gasiamis 20:33
Yeah, that’s right. And you’d been independent for many, many years. Probably moved out of home much younger.
Neetu Mehra 20:43
Yeah, while ago, that’s a big life change coming back. And just being dependent on people now. Even in terms of like, you can’t just step out and go for a walk or step out and go meet my friends. Like, everything’s very planned. And people come to me now it’s very different. Like, I can’t drive my driver’s license is suspended as well.
Bill Gasiamis 21:11
Is there some kind of hope that you’ll be getting a driver’s license back at some stage? Are you thinking of going after that particular goal?
Neetu Mehra 21:21
That is definitely a goal of mine. Because my right side is fine. They have like adapt. You can add an accessory to make your vehicle adaptable. And thankfully, my memories completely fine. And my vision, I haven’t had a vision test, but it seems okay. My profiles are okay.
Bill Gasiamis 21:45
And what about your work? Have you managed to get back to work? Are you doing any work at the moment? Not
Neetu Mehra 21:52
yet? No. So I’m on leave from work right now. I definitely miss it. Like I miss the interactions and like, using my brain and doing work and stuff. But um, yeah, that’ll be I think a little bit of time. I just get tired. When I have like long days. It’s exhausting. To take some. Yeah, fatigue. Yeah, I’m definitely focused on physiotherapy and occupational therapy. So I go there a few times a week, I have poor therapy as well, which is great.
Bill Gasiamis 22:28
And what have you noticed, with regards to your condition, so at the beginning, therapy would have been really hard to do. And now it’s probably still hard. But I imagine you made some gains, some, you’ve developed some additional strength and some, tell me a little bit about what’s different between when you started and where you are now.
Neetu Mehra 22:47
I mean, the fact that I can walk with a cane is fantastic. In the house, I used to have a wheelchair all the time, and even be wheeled to the bathroom, things like that. Now, I just walked through on my own so I can walk independently from room to room, which is great. I’ve even climbed a flight of stairs, which is fantastic. That was that’s brand new for me.
Neetu Mehra 23:13
So I climb up sideways and they go down forwards because of the railing is only on the left side when I go up the stairs. And then they’ve retrofitted the house to add a chairlift. So the chairlift goes to the basement. So I’ve been sleeping in the basement. So that’s good. And then I’ve Yeah, some even at physiotherapy I’ve been walking. I’ve been practicing walking without a cane once in a while. So that’s going to that’s a goal of mine, for sure. To walk properly again without a cane.
Bill Gasiamis 23:51
And it hasn’t been long time. It’s very early on.
Neetu Mehra 23:55
Yeah. Five months.
Bill Gasiamis 23:59
Do you have a sense of how long you expect this recovery to take? Where are you at with your mindset? What are you thinking about recovery? And what is your day to day life telling you about what your thoughts are?
Young Stroke Survivor’s Recovery Timelines
Neetu Mehra 24:23
So I’m not sure whenever I ask a doctor or a physiotherapist. They don’t want to answer that question. And they won’t guarantee that I’ll be recovered fully. So I know that I’m very determined. So I’m working hard every single day. Not really sure on the timelines.
Bill Gasiamis 24:42
That’s good. I’d rather you didn’t have a timeline because a lot of what happens for a lot of stroke survivors they have a timeline that they set perhaps in their head or doctor said you’ll be up on your feet in six months or 12 months or something like that. And then they don’t meet the timeline, and then they get really out on themselves, which is not a reflection on them, it’s just a reflection on the condition that they are recovering from. So I like to tell people to have goals.
Bill Gasiamis 25:10
My goal is to drive again, my goal is to do all these things again, but not to put a timeline on it so that you’re still always forever working towards the goal. But you’re not limiting yourself. And then potentially getting to the point where you feel a little bit down on yourself because you haven’t met your unrealistic timeline. And that’s the thing about it. Most timelines or deadlines would be unrealistic, because your stroke is different from everybody else’s, you’re different from everybody else.
Bill Gasiamis 25:41
So you can’t really say it’s not a broken bone, for example, that, you know, you break the bone, you put it in a cast, you’re out for six weeks. And then after that, the cast comes off and you rehabilitate that particular boat, that limb for a little bit, and then you’re back on board, it’s a little bit different. It’s slow and steady wins the race in this type of situation, it’s definitely going to take longer than five months. And you can see that in five months, you’ve made a lot of gains, and you’ll continue to do so.
Bill Gasiamis 26:17
So by 12 months, you’ll be a lot further along, perhaps not exactly. Driving yet, maybe not. But the training, and the effort that you’re putting in now is definitely going to pay dividends. But then, at the same time, you don’t want to overdo it, because you want to make sure that your fatigue is not debilitating to the extent that you can’t get up and get around and do the things that you want to do. And at the same time, sometimes you want to push yourself beyond the limit. So you can see, you know how far further you can go before you’re completely exhausted. And then just allow yourself the time to become to rest, rest as much as you possibly can.
Neetu Mehra 27:08
Yeah, that’s one thing. I think I didn’t have a concept of rest before my stroke. Just keep going live life. And it’s the physiotherapist that are like, okay, take a rest take a break. So I do that now when I’m doing my exercises, and that’ll take a little rest.
Bill Gasiamis 27:27
You want to give the brain some time to recover. Because your muscles and your and your limbs and your legs and all that kind of stuff can keep going and going and going. It’s your brain that has to recover. Now, whereas before, you didn’t ever gave any thought to physical exertion making your brain tired, you know, you’re never not once did you think about that. But that’s what it’s doing now.
Bill Gasiamis 27:56
So your body might want to keep going, but the brain needs time to recuperate and rest. Are you experiencing any other complications from the strokes other than your left side deficits? Oh, man, I know the fatigue is there. And you’re not working yet. But like any other medical complications.
Neetu Mehra 28:21
My smile is not back yet. I went to the speech therapist actually this week, and I’m starting speech therapy as well. So I can work on getting my smile back. She also noticed there’s like a missing some like tone in my voice, I noticed that my voice is a little quieter than before. And that some vocal cords I think are folded. They’re not. They’re not even. So she can notice that.
Neetu Mehra 28:48
So I’m working on that too. In terms of other health, like they’re checking my heart one more time because they don’t know the cause. And they their theory is each atrial fibrillation. But there’s nothing, there’s no data to prove that. But when I was in the hospital, I had my heart attack, check multiple times inside and out.
Neetu Mehra 29:08
And it was fine. Yeah. But I didn’t notice that before the stroke, when I would run on a treadmill. My heart would be really, really fast. So I noticed that there was something off about that. And even sometimes running up a flight of stairs would make my heartbeat really, really fast and it just wouldn’t stop. So maybe something to do with that.
Bill Gasiamis 29:31
Okay, and you made them aware of that particular thing that you had noticed. Yeah, okay. Well, that’s probably a good place to start. Thinking about it is this usually is a cause whether they come across the cause or find the cause it’s another it’s another thing but I would suggest that you keep going for these tests and you keep getting used as a medical experiment, so that eventually whether it’s a stick Can opinion a third opinion false.
Bill Gasiamis 30:01
And eventually you come to the point where perhaps somebody discovers what the cause is, even though it takes a long time, just do that. I know if there you’d be in a situation now where they’re giving you pretend preventative medication, so you’d be on blood thinners to make sure that another clot doesn’t occur. That’s a really awesome protocol, because that does actually make a massive difference to the blood and the way that it flows and the fact that it stops it from clotting.
Bill Gasiamis 30:33
So that’s a really good thing. And then you’ve got a lot of skills in keeping yourself well and healthy, because of all the stuff that you did before you became unwell. So what kind of things have you implemented now? Or is it just business as usual as far as your nutrition and your, the way you go about life?
Bill Gasiamis 30:57
Just a quick break, and we’ll be right back with the interview. Now, imagine a life where the impossible becomes possible where the challenges of stroke recovery transform into a story of triumph and growth. This is my story, and I’ve captured it all. In my new book, The Unexpected Way That A Stroke Became The Best Thing That Happened. I know firsthand, the emotional rollercoaster of stroke recovery, the fear, the uncertainty, the frustration, I’ve been there.
Bill Gasiamis 31:24
And through my journey, I discovered that a stroke while devastating could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a roadmap to not only navigate your recovery, but to thrive in ways you never thought possible. Are you ready to turn your challenges into opportunities to find strength in your struggles, the unexpected way that stroke became the best thing that happened is more than a book.
Bill Gasiamis 31:56
It’s your companion on this journey, a source of inspiration and a testament to the power of the human spirit. To get your copy from Amazon today, follow the links in the YouTube description of visit recoveryafterstroke.com/book and embark on a transformative journey toward a brighter, more empowering future because the best chapters of your life are yet to be written.
Struggling With Meditations And Post-Stroke Deficits

Neetu Mehra 32:20
Nutrition I’m pretty health conscious I was before but I’m even more now. And even in terms of like, doing my exercises and physio every single day, I’m pretty diligent with that. And then also making sure I’m hydrated and I used to meditate a lot before. So I’m trying to keep that going as well. I find a little bit harder to focus on my meditations.
Bill Gasiamis 32:51
How’s that tell me why?
Neetu Mehra 32:54
Maybe because of it was the right side of my brain that was affected is the right, the right side MCA stroke. So that’s your creative, meditative side too. So I feel like before I used to be able to get into really deep meditation quite easily. Now it’s a little bit more difficult, more challenging. But I still keep out in practice.
Bill Gasiamis 33:18
That sounds like a really good exercise regime for your brain.
Neetu Mehra 33:24
I tried to sit outside in nature on the nice days, and I take in the greenery and thing is before like the stroke I used to like to go for walks outside. Now I’m not really doing that yet. Although sometimes I have like, friends or family take me for a stroll around the street in the wheelchair which is nice.
Bill Gasiamis 33:45
So with your walking. Is it safe walking, and when you’re walking around the house, do you feel safe?
Neetu Mehra 33:52
I do. Yeah, I feel safe. And then I walk laps in the house as well every day just to get that momentum.
Bill Gasiamis 34:04
Around the kitchen furniture, around the tables, and lounges.
Neetu Mehra 34:08
Kitchen, living room, and hallway area. Yeah.
Bill Gasiamis 34:13
Yeah. Sounds like next time somebody comes over to take you around the block with a wheelchair, maybe leave the Bucha behind or take it with you. And then do a few steps without the wheelchair and then have the wheelchair there as a backup just to get you back if you get really tired.
Neetu Mehra 34:30
Yeah that’s a good idea. I did that once. Yeah, that’s a good thing to start practicing again.
Bill Gasiamis 34:39
Have you spent much time out of the house and I’m talking about have you taken a wheelchair and got into one of those wheelchair friendly taxis and gone down to your local grocery shops or anything like that.
Neetu Mehra 34:57
Honestly, not too much. I haven’t gotten. I think I went to grocery store once or twice. But not by myself. I haven’t done anything on my own yet. I always have people with me, which is good.
Bill Gasiamis 35:13
Wwith people. What about other deficits? Do you experience any issues with light or sound? Or a lot of people or any of that stuff? Do you have any other types of deficits that impact your energy levels?
Neetu Mehra 35:33
I think a lot of people I went to like my first party a few weeks ago, it was outdoor get together. I was definitely very tired after and it was overwhelming seeing a lot of people at once. Before the stroke, I already had sensitivity to light. Yeah, I’ve always had sensitivity to light. Like I like sunlight, but I don’t like bright artificial lights.
Bill Gasiamis 36:02
The fluorescent kind which is like hospital lights.
Neetu Mehra 36:09
So I’ve been wanting to like often sit in the dark or sit with up lights off.
Bill Gasiamis 36:15
Was it causing you headaches? Was it causing you fatigue? What was causing?
Neetu Mehra 36:22
Like my eyes would tear up if it was too bright? My eyes it was felt sensitive. So the light? Yeah. Sometimes headaches, but not very often.
Bill Gasiamis 36:35
But the sun wasn’t an issue. You could go out and spend as much time out in the sun as much as you needed, but not endorsing it. Artificially.
Neetu Mehra 36:42
I had sunglasses on.
Bill Gasiamis 36:48
So I’m kind of like that now. Sunglasses in the sun, they go hand in hand, or very rarely take them off. When I’m at the beach, for example, I will make sure that I’m wearing sunglasses in the water. And I’ve done that for many years, even before stroke. And I spent some time after I first went back to work. Initially, my the work that I went and did was in an office.
Bill Gasiamis 37:14
And in that office, they had bright fluorescent lights above everybody’s head, basically, there was hundreds of them in that damn building, you know, I still walk in there with my sunglasses and keep my sunglasses on. And sometimes wear a hat. Because it was too bright above my head. And it would really impact my ability to work, especially with the monitor.
Bill Gasiamis 37:40
Two monitors, one on each side, it was very challenging. And I remember the light above my head went out, and they got the maintenance guy in to go around the office and change all the lights that were out. And thankfully, when I was at my desk, and he came to replace the light, I said to him, just leave it out because I prefer it without the light. So then there’s this whole bright, lit up office, but above my head is this the respite from this little dark spot. And it made a massive difference to the way that I felt.
Neetu Mehra 38:20
Yeah, I can relate to that for sure. Even before the stroke of my old office, there used to be bright lights. And I had a similar situation where the light went out. And I was like, don’t fix it. I was happy with it not being on.
Bill Gasiamis 38:35
Yeah. So how come it took so long to get speech therapy? Was it something that you guys just didn’t realize that you needed? Or how did it get to that point where it’s taken you five months to get there?
Neetu Mehra 38:55
It’s funny, I asked the same question. So I had a speech therapists come and do a swallow test when I was in the hospital. And I pass the smell test even like they wanted to put a feeding tube on me and I was like, No way. I love food too much. There’s no way I’m getting a feeding tube.
Bill Gasiamis 39:12
Was that early on when you were first admitted? When I was first admitted, yeah. They asked you for a feeding tube. They wanted to
Neetu Mehra 39:21
put a feeding tube on they said they’re gonna put a feeding tube and I said no, thank you. Wow. And then I was having thickened liquids and like, mashed potato type food for like, weeks, three weeks, four weeks. And then when I pass the swallow test, it’s solid foods. That was great. I was very excited. Just happy to be able to eat real food again.
Bill Gasiamis 39:50
So for safety purposes, they wanted to keep you not eating food in case you choked. Yep. Did you feel that Was any difficulty in swallowing back then? Was there any? Did you have any concerns about that? Were you taking more care?
Neetu Mehra 40:09
There was at the beginning. I just remember I wanted to just have like, a cup of tea without thickener in it. And that took a while to happen. Yeah, I was definitely taking more care. Like at the very early days, the first week I was being spoon fed liquids and the mushy food. Yeah.
Bill Gasiamis 40:34
Is it possible? And bad enough? They tend to do too much. Exactly.
Neetu Mehra 40:42
Yeah, hospital food was actually better than the food rehab. The rehab hospital food was terrible.
Bill Gasiamis 40:51
Yeah, I think they must do it on purpose in rehab, to get you out of the ketchup. Yeah.
Neetu Mehra 40:57
I kept telling him, You need to get a new chef.
Bill Gasiamis 41:01
Yeah, that’s one of the strange things about food is that it’s such makes such a difference on the health of person food. And it makes such a difference in how you’re you feel on a daily basis. And with people going through any medical condition. In our case, stroke. You want to have the best version, this quality food you could possibly have flavor. Going to I can kind of understand if they’re not awesome. One flavor, but you know, it really needs to be good food. And even if it’s not a lot of it, it needs to be good quality suspicious. Yeah. So that it can heal help people heal and overcome and recover.
Neetu Mehra 41:46
Yeah, I completely agree. Thankfully, I had lots of friends and family, bring some home cooked meals. So I was I was eating well, better than what they provided me with.
Bill Gasiamis 42:01
That’s such a blessing, isn’t it, I had the same thing. My parents would deliver food on the daily, make a food, bring it over in the morning. And then I would have for lunch instead of the the hospital food. And when they didn’t come with food it was a challenge to to eat that stuff because I was spoiled by them and good times. Tell me about your journey. So you’re five months out. Everything is different from what it was five months ago.
Bill Gasiamis 42:35
And you’re already on a podcast, talking about your situation. Now. That’s really cool. I think that the people who have great recovery outcomes, and what I mean by that is, is that they are mentally and emotionally doing really well. Some years down the road after stroke, even if their physical condition isn’t, we’ll call it 100%.
Bill Gasiamis 43:06
If it’s not exactly like it was before stroke, I feel like they have better outcomes, people that are active in the space of kind of seeking out people who are understand them who are like them. Tell me about your thinking around discovering things about stroke or learning about Shoko finding people that are like us that understand what you’re going through? What, What’s your thinking behind that?
Neetu Mehra 43:40
Yeah, I’ve joined some stroke groups. And I went to an in person meeting this week, actually, with a charity. So that was, that was pretty good. I’m trying to seek out people that have had similar strokes and just get advice. And have you even connected with somebody and in the UK, as well. So overseas for me, who had a similar stroke at a similar age. So it’s just nice to get advice and chat with people that are going through similar situations.
Neetu Mehra 44:10
Because I feel like my life just got taken away from me out of the blue all of a sudden. Like everything in my life has changed basically. It’s like, I’m glad I actually lived a good life before in terms of like, you know, I had a good childhood, I lived in my 20s and 30s. I traveled a lot I focus on my career I did a lot with my life and I just feel like now it’s like reintegrating into the world. As like a disabled person, it’s very different as an adult versus if you’ve grown up like that as a kid. So I find it challenging your amount of adjustment, a lot of adjustment. Also just what it could do for myself before versus now. Very, very different.
Young Stroke Survivor’s Mental And Emotional Recovery

Bill Gasiamis 45:01
Yeah. And that adjustment is physical, but also, it’s a mental adjustment. It’s how you think about yourself and how you talk about yourself to yourself and how you comprehend all of the challenges that you’re facing and how you find the guts and determination and how you become resilient to tackle all of the challenges that strokes thrown your way. Because it’s not just one challenge. It’s not just one, you know, injured leg, it’s an injured body body. How is that for you? How do you navigate that part of your recovery, you know, the, thinking part of it, and the emotional part of it.
Neetu Mehra 45:54
The thinking part of it, I feel like I’m pretty rational and logical. So I think that part is okay, just like, reintegrating into society and doing things that you still enjoy doing that that part’s a bit hard. Especially like, I can’t go to a yoga studio anymore, and do that. Although I found like online adaptive yoga classes, which is great. I’m just trying to do some of the stuff I used to do. It’s funny that people that don’t know me think that my smile is fine. Yeah. Then I look at my old photos.
Bill Gasiamis 46:27
And you compare yourself? Yep. And you know, there’s a difference, but you probably also feel a difference in your face.
Neetu Mehra 46:34
Yeah, my face was very numb for a long time. Yeah, getting a little better.
Bill Gasiamis 46:43
I didn’t notice, until you told me that. There was an issue. I didn’t notice anything. I’m not sure if that’s a consolation. But it looks like it’s coming. Good. Like, what did you have the droop? On the on that left side?
Neetu Mehra 47:00
I did. Yeah, a lot of people that see me say I look a lot better than I did before.
Bill Gasiamis 47:08
Okay, so it’s improved in the last five months.
Neetu Mehra 47:11
Yeah I try to massage my face too.
Bill Gasiamis 47:17
A little bit of external stimulation to try and get blood flowing and good things happening. Yeah, I think you’re on a good path forward. Like, I think that all the things that you’re doing are definitely going to help in some way, shape or form. To what extent, well, that remains to be seen, but the fact that you’re putting so much time and effort into doing some major things like you know, making sure you do your physical exercises, and all that kind of stuff.
Bill Gasiamis 47:44
And then some minor things like massaging your face, all those things they add up in time, that make a massive difference. And a year and a half from now, you will have made a lot more gains than your then you currently have. But like I said, five months out, it’s just at that time when you’ve stubbed your toe on the kitchen bench, you know, and it really, really hurts.
Bill Gasiamis 48:14
That’s how soon it is for you in in the in the terms of like the stroke recovery timeline. It may as well be just a few days out of that particular foot injury because that’s how long it takes for the brain to heal and recover, get back online. And you’ve really got to be the person who makes who who’s in control of your recovery or who’s guiding your recovery. If you’re passive sitting around waiting for physical therapy, before you’ve done any exercises, your recovery will take longer, because physical therapists don’t enough.
Bill Gasiamis 48:56
It’s great that you go there because they can measure things and they can guide you. And they can give you advice on the right form and the right way to go about things. But if you were passive in your recovery, it would take a lot longer for you to achieve some of those goals that you want to achieve, which is to be up and about on your own or to be driving.
Bill Gasiamis 49:25
So there’s a lot of good signs there. And at the same time with the medical interventions of in the blood thinners and all the things that they’re doing to keep you from having another clot then it’s all gonna work out. You know, like, it’ll all come together at some point in time and you’ll be able to look back and go, Oh, my God, all those things that were happening at the same time that seemed like they were really hard and it wasn’t getting massive results. They’ve paid off now.
Neetu Mehra 50:03
Yeah, I think that everything happens for a reason. And we’re given these things that we can deal with, to make us stronger. And like, whatever happens to people I think happens for like a reason. I don’t know, in my reason yet, but I will eventually.
Bill Gasiamis 50:18
Do you think that’s sort of tied into your purpose? The reason that it occurred is tied into your purpose.
Neetu Mehra 50:30
It could be like my purpose of, yeah, like, clearly, I survived for a reason. Like I was on the floor for 12 hours. That’s not like, common to survive something like that.
Finding Purpose After A Stroke
Bill Gasiamis 50:46
Yeah, I don’t know what the reason that I survived was, I don’t know, like, the reason reason. But I did wonder why I had survived. Like, it really crossed my mind early on, like, I had survivor’s guilt. Yeah, I’m not sure if that’s a thing that you’re familiar with. But like, it was like, Why did I survive? I didn’t know whether I was worthy. Or whether I had earned it, or now, what am I going to do?
Bill Gasiamis 51:18
I’m alive, what the hell am I going to do now? Or how am I going to go about my life? And this podcast might be a result of that it might be one of the things that maybe I had to achieve or do or put out there. Because I survived. And because I was giving another chance, you know, I just can’t go back to being my old mundane self. And be who I was before that, like, it just didn’t seem like enough. That didn’t seem like the right thing to do.
Neetu Mehra 51:55
I think your podcast is great. You’re adding a lot of resources and valuable information for so many people. Do you feel that’s your purpose now?
Bill Gasiamis 52:06
Do I call it my purpose. The old man definitely didn’t do a podcast didn’t interview people didn’t interact with people who had experienced something like a stroke, or another disability or an injury or anything like that I interacted you know, with, we’ll call them normies, you know, normal people who were all just okay. And it was just a matter of time, I think before we I ended up interacting with people who are unwell, just happened to be I was young, I was 37.
Bill Gasiamis 52:42
So I had not known anybody who was, in my family, a member of our family, extended family, otherwise, who are friends who were injured by anything. I don’t know how you get to 37. And avoid all of that, but I managed to avoid it. And and then when it happened to me, and I met a whole bunch of other people who had strokes through the Stroke Foundation, I quickly realized that there’s a lot more people out there that are like me than I thought and being with them in there, you know, and sort of experiencing life through them.
Bill Gasiamis 53:33
Because I spent some time in a wheelchair. Like I understood what stress does to people, but then interacting with these people kind of gave me more of an insight. And then I was really shocked about the fact how naive I was or how dumb I was. And it wasn’t my fault. I just I don’t know what the word is. I don’t know if the right term is I had a dream run or what.
Neetu Mehra 54:04
You probably just weren’t exposed to those types of situations before Same with me and never interacted with these types of people until the stroke.
Bill Gasiamis 54:16
And then I felt more connected to people from the Stroke Foundation who I met through the Stroke Foundation than I had ever felt with other people that I’d met. And then I had all this information about all like yours very proactive. I made a lot of health choices. I made a lot of physical activity choices. I did a whole bunch of things to make sure that I prevented the next stroke as much as I could and that I also didn’t.
Bill Gasiamis 54:51
I wasn’t responsible for the next one if it was to come, but you came a few times and then And then I had stuff to share. And I figured, well, the these things have been really helpful for me, and how can I share those things that I’ve learned? So I started, somebody challenged me to do more than just advocate in my neighborhood. And kind of said to me, you know, there’s this thing called the internet, you want to look into that?
Bill Gasiamis 55:22
And I thought, okay, how could that work, and then I got over the, all the technology for years, and all that type of stuff. And I just realized, all I needed to do was get onto a zoom call and press record. And then I had a video and an audio immediately. And that was really good. Really good for me, I was getting therapy, every session that I was doing and recording an interview, it was helping me and it still does. And then. And then the old me never write a book about anything.
Bill Gasiamis 55:56
You know, I hardly read a book until the age of 37. And then, the idea for the book came into my head, I researched that. And it was such an organic thing and might have taken four years, and I never would have never would have thought that it would have taken me four years to write a book. But it’s the, it’s the Navigating the fatigue, the lack of clarity, the inability to sit in front of the computer and type for hours and hours.
Bill Gasiamis 56:30
It’s navigating all of that stuff that made it take so long, but now that it’s there, and it’s done. And it’s out, a whole bunch of feedback from people has been really positive. And every time I get some positive feedback about the podcast, or the book, or, you know, the other stuff that I do around stroke, it does feel like a purposeful pursuit, it feels like a rewarding and fulfilling pursuit.
Bill Gasiamis 56:59
And I never really had that before, it’s rewarding to be a dad and to raise family and to do all that kind of stuff. But that’s more more of an obligation. You know, if you become a parent it you’re obliged to ensure that your child is healthy fed, has you know, roof, well educated and all that kind of stuff, I feel like that’s more of an obligation even that gives you a little bit of purpose in life. Because really quickly, the kids leave home. And then you’re back to being yourself.
Bill Gasiamis 57:38
Again, it only takes about 20 ideas before they’re out of the house. And that’s a short amount of time. That’s, that’s, that’s kind of like a big distraction from your actual life’s purpose. I feel like kids are a little bit of a distraction, you take down the path. And if you don’t notice that you’ve put all your time and effort and your identity in being a parent, then it really catches you off guard later when they move out. Because now you’re not a parent anymore, and you don’t know what to do with yourself.
Bill Gasiamis 58:14
So I was kind of lucky that all this transition, then moving out, and maybe picking up these new skills and evolving, happened while they were you know, the stroke and that kind of happened when they were teenagers, and they were coming of age. So my transition into this new identity, this new version of myself this podcast and the book, and all of that came hopefully at the right time.
Bill Gasiamis 58:49
And I’m not sitting there now with an empty house and me and my wife wondering, what the heck what do we do now? And I’m only 50 Like, can’t imagine. Can’t imagine being not having this particular pursuit. Perhaps I would have picked up something else but let’s be honest, maybe I picked up something else to do on a Saturday morning or a Friday evening or whatever but I’m not sure. It would have been pretty hard to just go from being a parent to now they’ve moved out and now what do I do, how do I go about things.
Neetu Mehra 59:32
Yes, I think everything happens for a reason.
The Hardest Thing About Stroke For A Young Stroke Survivor

Bill Gasiamis 59:38
What has been the hardest thing about stroke for you?
Neetu Mehra 59:43
Coming to terms that it happened to me and just feeling that my body is completely different.
Bill Gasiamis 59:55
Did you do the why me?
Neetu Mehra 59:58
Not really It’s almost like I’m taking one for the team because like, statistically like, something like this happens to, I’m not sure what the stats are, but like, I think yes, I’m the stat.
Bill Gasiamis 1:00:16
One in four people will have a stroke in their lifetime. It’s ridiculous.
Neetu Mehra 1:00:24
That’s pretty high.
Bill Gasiamis 1:00:25
80% of those strokes are ischemic. About just above 20% of the people who have an ischemic stroke will pass away after the first one. About 60% of people who have a stroke will go back to work in some capacity. And then the other 20%, so I think I mentioned 20 or so 60, and then the other 20 will not be able to go back to work in any capacity. So you feel like you’re taking one for the team?
Neetu Mehra 1:01:08
Yeah, one of my cousin’s husband said that to me, and I was like, Well, that’s very true. Because he lost his wife to cancer. That’s it’s like she took one for the team. So that was his thinking around it.
The Lessons From The Stroke
Bill Gasiamis 1:01:27
If it helps or not? Yep, that’s a big deal to take one for the team to be that person. The team doesn’t even know that you’ve taken one for them. And what has stroke taught you?
Neetu Mehra 1:01:54
That life is short. Might as well live it. And I feel like I’m happy that I lived before, not that I won’t live again. But like I didn’t sit back and let life lead me like I was proactive about things. If I wanted to go travel to that place, I would make it happen. So I think it taught me that like, you got to do what you want to do with in the moment. And don’t wait, don’t put things off.
Bill Gasiamis 1:02:25
I want to say that this is the state that you’re in right now like the zone that you’re in right now is temporary. Now, what that doesn’t mean is that I know how long it’ll take, it might take longer. It might take a year or two or longer. I don’t know what. But it’s temporary. And in the span of a lifetime. It’s a blip on the radar, really. But while you’re in it, I mean, it’s a little bit of a maybe for some patients, or some people, it’s not a big consolation for me to say what I’m saying.
Bill Gasiamis 1:03:12
And if you can get through this time, time will fly. You know, you’ll get to the other side, and you’ll go oh my god that was already on me as an example. It was already 12 years ago. That’s insane, that it’s gone that quickly. And that so much time has elapsed. There are some years in the middle there that are kind of vague, My Vague years after the third after the second blade that was quite vague.
Bill Gasiamis 1:03:41
And about a year and a half after my third blade and my brain surgery, I went through thyroid thyroidectomy part of my thyroid was removed. And that time was a bit of a hazy part as well. So I feel like in the last 12 years, I’ve lost maybe 18 months, early on and then I’ve lost kind of another two years after that. It just feels really bizarre and hazy. And I don’t have a lot of connection to that time. I remember the day that I woke up and my foot felt numb like it was yesterday.
Bill Gasiamis 1:04:21
And I just sometimes reflect back on it how much time has passed how long it took it felt for me to get to 12 years. And then also when I reflect back like how quickly it went. And those hazy times when things were really rough. They really do seem like a blip on the radar now now that it’s been 12 years because life has been because like you’re just go after everything so it’s been really full and rich for as long as possible.
Bill Gasiamis 1:04:53
And I’m not saying that there hasn’t been shit times there has been and there hasn’t been downtimes and bad moods and all In bad emotional states and crazy thinking patterns, everything has been there. But it’s been so full of a lot of other things like podcasts and writing a book. And in a few months, I’m going to do some presentations at some stroke conferences, that I reflect on it positively.
Bill Gasiamis 1:05:25
And that’s kind of why the title of the book is, the unexpected way that a stroke became, the best thing that happened was because like, because life’s short, I’ve squeezed as much as I can in the last 12 years. As I physically and emotionally could. So this time, it’s a blip in the radar.
Neetu Mehra 1:05:53
Yeah, cuz I think we can’t control what happens to us, but we can control how we react to it.
Advice From A Stroke Survivor To Another
Bill Gasiamis 1:05:57
Yeah, definitely how we respond. What would you say to somebody listening? Who’s going through what you’re going through? Who’s early on in their recovery? Or perhaps they’re a little further down the track? What would be a little bit of advice that you would give somebody?
Neetu Mehra 1:06:18
Don’t be too hard on yourself. I often find them hard on myself before the stroke and now and just work hard. But don’t don’t beat yourself up over things.
Bill Gasiamis 1:06:33
What kind of things? Do you beat yourself up? Over?
Neetu Mehra 1:06:36
Too much just thinking like, why isn’t my arm function or hand function coming back yet? It’s like I’m trying. And I’m like, even when I’m walking, like I’m commanding my foot, just take a step in a certain spot. Sometimes it doesn’t go where I want it to go. Couple weeks ago, I had a fall too, which was not fun. Is a setback.
Bill Gasiamis 1:07:03
Did you get injured physically?
Neetu Mehra 1:07:06
My left side was in a lot of pain. I had a big couple of big bruises on my left hip. Yeah. Overall, it’s fine. Not that bad. Just now there’s a fear of falling.
Bill Gasiamis 1:07:24
Yeah, that’s fair enough.
Neetu Mehra 1:07:29
That was on a day where I was doing so good. Like, I had just gone to physiotherapy. And I tried walking without a cane. Without supports, which was fantastic. And then I was taking a step into the house, and I fell on a day where I was actually having a good day, and it was progressing.
Bill Gasiamis 1:07:50
And that’s an example of pushing yourself beyond the limit, right? It’s testing your capabilities and learning the hard way that probably not there yet, but I think feels like you know, when those things happen, like you’ve broken a little barrier anyway. Because you had such a good day, you weren’t capable of doing things.
Bill Gasiamis 1:08:13
And I’ve tripped over my left leg plenty of times, especially going upstairs. Because my left leg, just a little less likely to clear the step at the right time, and if I’m not thinking about it, and if I’m rushing the bottom of my shoe, I just let the step and I fall over, going up this step. You do get better, and you start to adjust. And you start to do things a little bit differently automatically, and it will improve.
Neetu Mehra 1:08:54
It’s amazing how much focus it takes to even just walk up steps in general.
Bill Gasiamis 1:09:01
You have to think about what you’re doing rather than just do it.
Bill Gasiamis 1:09:07
I had a fall in our house when my wife went back to work. And the kids were at school. And I made myself some lunch, and I was sitting at the couch eating it. And I had forgotten that my left leg was numb and couldn’t feel the ground underneath it. It was probably month three or four or something like that. After brain surgery. I laugh now, but it wasn’t funny at the time.
Bill Gasiamis 1:09:36
I got up and I went to take a step with my left leg. And it just the knee just collapsed underneath my weight. And I felt with my ribs on to the arm rest of the couch. And the plate that I was holding went flying and smashed on the ground. And I ended up on the ground at home alone. feeling sorry for myself and definitely in pain. But that fall made me pay attention to me getting up off the couch from that day on every single day.
Bill Gasiamis 1:10:10
After that, I made sure that the first leg on the ground was my left leg. And that it’s the one that got me up off the off the couch. And if it couldn’t get me up to that meant that all I was going to do was fall backwards back onto the couch. So it was a really safe test to see if the leg was going to hold me. And then that kind of made me just pay more attention.
Bill Gasiamis 1:10:45
But it’s a lesson I would have loved to learn in another way, I would have preferred to learn it without falling around, especially my ribs. Thankfully, I wasn’t, but didn’t break anything or get injured. But then, even now, sometimes 12 years out, if I’m having a really good night’s sleep, and I wake up in the morning, my leg is still a bit sleepy, it takes a little bit of time for it to warm up and come online.
Bill Gasiamis 1:11:12
And if I get out of bed, because I get out, I slip on the left side of the bed, if I get out and put my left leg down first, which is what I always do, and it’s still sleeping. Sometimes I could fall, I could kind of lose my balance getting out of bed. I have to make sure that when I get out of bed, both my legs are on the ground. Before I go to take that first step and before I stand up, so even getting out of bed, I have to be alert so that I can make sure that I don’t have a full and end up in the wardrobe.
Neetu Mehra 1:11:54
Yeah, I feel like I’m more alert too since my fall, I’m very cautious and like mentally I’m trying to say like, in my mind, my legs are going to support me. I’m strong enough. I have to say like positive things to myself. And focus really, really hard.
Bill Gasiamis 1:12:09
I think you’re on the right track. Neetu I really appreciate you reaching out and coming on the podcast and sharing your story. I wish you well in your recovery. And I’d love to hear. I’d love to hear 12 months from now how far along you’ve come. So feel free to reach out.
Neetu Mehra 1:12:28
Okay, that sounds great. Thank you so much for having me Bil,l was really nice chatting with you and hearing some of your story as well.
Bill Gasiamis 1:12:36
Well, that’s it for a another episode. Thank you so much for listening. And being here. I really appreciate you, I do hope that you got something out of the interview. Remember, if you’re interested in a copy of my book about stroke recovery, you can grab [email protected] by using my name Bill Gasiamis In the search bar, or by heading over to recoveryafterstroke.com/book.
Bill Gasiamis 1:13:02
If you want to know more about my guests, visit recoveryafterstroke.com/episodes to find their social media links and to download a full interview transcript. A huge thank you to everyone who has left a review it means the world to me your feedback is crucial for the podcast’s success, helping others discover this valuable content and making their stroke recovery journey a bit easier.
Bill Gasiamis 1:13:28
If you haven’t left a review yet, please consider giving a five-star rating and sharing what the show means to you on iTunes and Spotify. For those watching on YouTube. Please remember to leave a comment below each episode, and subscribe to the show on your preferred platform to get notifications of future episodes. Are you a stroke survivor with a story to share now is the perfect time to join me on the show that interviews are unscripted and require no preparation just be yourself and share your experience to help others in similar situations.
Bill Gasiamis 1:14:05
If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact. Fill out the form with your category and I’ll get back to you with details on how we can connect via Zoom. Thanks again for being here and listening. Your support means everything to me. See you on the next episode.
Intro 1:14:30
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The 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 1:14:47
All content on this website at any length blog, podcast or video material control 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 1:15:09
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 1:15:24
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 1:15:49
Medical information changes constantly. While we aim to provide current quality information in our content. We did 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 Young Stroke Survivor Neetu’s Ischemic Stroke at 44: A Powerful Story of Recovery and Resilience appeared first on Recovery After Stroke.
1 hr 17 min
July 25, 2024 Neuroplasticity and Stroke Recovery – Dr. Kenneth Monaghan
Dr. Kenneth Monaghan shares insights on innovative stroke recovery therapies, the power of neuroplasticity, and the essential support needed for caregivers.
Website
YouTube Channel
LinkedIn
LinkedIn Newsletter
University Profile
ResearchGate
If you want the practical version of this — what to do, in what order — that is what my four-module course How To Improve Your Brain Health After Stroke is for.
Highlights:
02:33 Introduction
03:57 Developing New Treatments For Stroke Recovery
12:14 Getting Involved In Your Own Stroke Recovery
16:56 Writing The Book Lights Mirrors Action
19:47 No Place Like Home For Stroke Recovery
27:39 The Milkshake Effect
42:48 Acknowledging Caregivers And Recognizing Progress In Stroke Recovery
58:50 Importance of Sensory Substitution
Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au hey everyone, before we jump into today’s episode, I have something special to share with you. Back in episode 305, I had the pleasure of interviewing Catherine Randabel, the brilliant mind behind HeadBed.
Bill Gasiamis 0:20
The product is revolutionizing hair salons, especially for stroke survivors. HeadBed offers exceptional neck and head support during hair washes, reducing strain and enhancing blood flow. And for stroke survivors, this means a lower risk of arterial damage and less worry about another stroke, ensuring a safer and more enjoyable salon experience.
Bill Gasiamis 0:45
I’m excited to support a product that perfectly aligns with my mission of stroke prevention and safety. During our interview, Catherine explained how the ergonomic design of HeadBed prevents neck hyperextension a common issue that increases stroke risk.
Bill Gasiamis 1:04
With HeadBed you can feel assured and comfortable at the salon knowing that your health is being looked after. If you are a stroke survivor or know someone who is, HeadBed is a game changer for your next salon visit, be sure to check out episode 305 for my interview with Catherine and discover how this product can make a real difference.
Bill Gasiamis 1:27
Now for our listeners in the United States visit headbedusa.com to get yours today and enjoy peace of mind during your salon visits. I also wanted to remind you about my book about stroke recovery. It’s called The Unexpected Way That A Stroke Became The Best Thing That Happened.
Bill Gasiamis 1:45
10 tools for recovery and personal transformation pages inspiring stories from 10 stroke survivors and offers hope for those on the recovery journey. For more details visit recoveryafterstroke.com/book or search for my name Bill Gasiamis on Amazon.
Bill Gasiamis 2:05
Welcome back to a nother episode of the recovery after stroke podcast. This is episode 313 And my guest today is Dr. Kenneth Monaghan, a physiotherapist and researcher dedicated to developing new treatments for stroke recovery. In this insightful episode, Dr. Monaghan shares his expertise on the importance of education and motivation for stroke survivors and caregivers.
Introduction – Dr. Kenneth Monaghan

Bill Gasiamis 2:33
We discuss innovative therapies such as mirror therapy, and sensory substitution, the power of Neuroplasticity and the vital role of positive expectations in recovery. Join us as we explore practical tips and inspiring stories that highlight the journey from rehabilitation to thriving at home. Dr. Kenneth Monaghan, welcome to the podcast.
Dr. Kenneth Monaghan 2:57
Bill, thank you very much for inviting me. It’s a great pleasure, I have to say, I’ve listened to a lot of your podcasts over the last few months and been very impressed with a lot of the guests that you’ve had on very insightful into the whole world of stroke and stroke recovery.
Bill Gasiamis 3:14
Yeah, thank you so much. I do like to have a vast range of guests, from stroke survivors to people who help out stroke survivors to researchers to all sorts of people, doctors, therapists. So it’s good that you’re you also reached out because you’re in that space of helping stroke survivors and also putting information out there for caregivers. And we’re going to talk about your book in a little while. But before we go down that path and chat about that, tell me a little bit about your background and how you came to be involved in the space that you are and the work that you’re doing.
Developing New Treatments For Stroke Recovery

Dr. Kenneth Monaghan 3:57
So I’m a physiotherapist or physical therapists for the last 32 years. And I’ve focused and I suppose specialized in neurology physiotherapy over the last 2025 I live in Ireland and I run a research group which specializes in new treatments for how to repair your brain after you know neurology conditions and stroke being one of them.
Dr. Kenneth Monaghan 4:28
And I call my research group, the Neuroplasticity research group and it’s a part of the University where I work Atlantic Technological University in Ireland. And I have to say I have a huge passion for trying to develop new treatments that help patients to recover mostly in their own homes. I’ve probably about six PhD students that have passed through my books over the last few years and a number of master’s research projects.
Dr. Kenneth Monaghan 5:00
And all of those have been involved in developing novel or innovative techniques that help stroke patients in particular, to recover. So I’m very much involved in developing new technology. But, I also realized that, you know, from talking to hundreds of caregivers and stroke survivors that I’ve worked with over the years, that when patients go home, or when caregivers are bringing their stroke survivors home, most people tend to feel a little bit, you know, devastated and disappointed, because they feel that this is the, this is kind of the end of the journey for them.
Dr. Kenneth Monaghan 5:43
And that, you know, when they’re not in a formal rehab setting, that that’s really the best chance of their recovery gone. But I actually, you know, from the research that I’ve carried out, and also from everything that I’ve read, and from everything I’ve experienced, I actually feel that coming home can be a different phase of the recovery, and actually your home really has unexpected benefits that most people would underestimate.
Dr. Kenneth Monaghan 6:12
So that’s why I wrote the book, Lights, Mirrors, Action, because I felt that maybe a week to two weeks out from somebody being discharged home, they could benefit from certain information that would educate them and give them confidence, and the caregiver confidence as well that, you know, when they’re going home, not to be thinking as a disappointed person, but you know, looking and planning for that next phase, because that can be very successful as far as I’m concerned and it’s something I’ve learned over the years.
Dr. Kenneth Monaghan 6:45
So that’s, that’s probably my background. And since I’ve started, since I started writing the book formally about two years ago, and I started interacting on LinkedIn. And that’s where I met yourself and where I came in contact with your podcast, I have come across so many people that feel the same way that there is a need for some information to kind of give people confidence and guidance. And it’s been a fantastic journey so far. And I have to say, I absolutely love it. And hopefully, I’ll keep going for the next number of years. So thank you for the invite as well.
Bill Gasiamis 7:23
Yeah, you’re 100%. Right. One of the biggest challenges that I faced when I went home was no information whatsoever. Now, it’s 12 years since I started down this whole journey of stroke and recovery. And the internet was just sort of coming into its own, there wasn’t a lot of information online. And there certainly wasn’t a lot of books in publication that I could pick up and read. There was a few scattered here or there, but there wasn’t an abundance of them.
Bill Gasiamis 7:58
And I remember being at home with my wife and trying to work out what now, you know, what do we do now, nobody gave us any information. When they sent us home, they just said, go home and don’t do anything for the next six weeks until your next appointment. And then every time something happened because I had a bleed in the brain and the blood clot was still in my brain for quite some years after that.
Bill Gasiamis 8:23
We didn’t know what that meant, like, how does that impact the brain? How does it cause challenges? What does it do to to somebody? So when I noticed that I felt weird or strange or different, or there was a shift in the clot or something? I automatically thought, Well, I’m probably having another stroke. And what do I do about that? And of course, I wasn’t having a stroke every time.
Bill Gasiamis 8:54
But the fear and the concern about it, since you have no knowledge whatsoever meant that we ended up in hospital a lot. We ended up in hospital at the drop of a hat every time we thought something was wrong. You know, we went to the hospital, and we wasted resources, which is probably not a waste. It’s it’s resources, though that could be allocated to somebody else.
Bill Gasiamis 9:19
We also lived in anxiety and probably in fear. And we needed guidance, we needed somebody to tell us how to go about navigating the next six weeks. So we fumbled our way through that. And then six weeks later, I had another blade. But then that’s when things got really serious. So the blade that was in my brain doubled in size. It was about the size of a golf ball, the club that formed and it was the time when I came home where I had no I had problems with my memory.
Bill Gasiamis 9:51
I couldn’t form a sentence properly. I couldn’t start and finish sentences. My thinking was gone. I couldn’t work I couldn’t write an email, I forgot who come to visit me, there’s a whole bunch of problems. And of course, we don’t know anything about what that means we don’t know if they’re permanent, we don’t know if they’re temporary, we don’t know if it’s because of the clot.
Bill Gasiamis 10:12
We don’t know if there’s any damage. So we are just guessing, and we’re doing our best. And we’re just swimming in this massive ocean of experiences that we’ve never had before. And we don’t know how to navigate it at all. We don’t have a map, we don’t have anything. So in desperation, you reach out to the internet and you’re trying, you know, grasp on to some document that you might come across, or a little bit of research or whatever, and it is a hit and miss a lot of the time it’s hit and miss you come across something, and it’s not really relevant.
Bill Gasiamis 10:47
And you’ve spent ages trying to find it, and so on. And one of the reasons the podcast exists is exactly because like you don’t want it to address that same gap. It’s what do you do, and honestly, the caregivers that I had my wife struggled the most, because she’s the one that’s okay, she’s the one that has the task to suppose that they care for me and look after me and pick up the slack.
Bill Gasiamis 11:14
And she’s got no information, because before she became a caregiver, she had no idea what she wasn’t trained, you know, doctors and nurses are always in hospital. They’re always getting trained, they’re always doing extracurricular activities to keep ahead of the the research, etc. But the layperson doesn’t have any idea. And they’re given the biggest task of anybody. And that’s to care for a stroke survivor.
Bill Gasiamis 11:44
So I like the way you think I like that idea of sort of trying to fill that gap and trying to send people home with some information that they could read to guide them about how to navigate that. And I specifically like the fact that you’re doing that for caregivers, you have caregivers in mind, understanding that the caregiver if they get the support and the help, and that ultimately benefits them and the stroke survivor, and then that makes everybody’s life a little easier.
Getting Involved In Your Own Stroke Recovery
Bill Gasiamis 12:14
And stroke survivors can be difficult at times, because they’ve had a stroke, and they’re dealing with altered, neurological way of being you know, they’ve completely altered could be deficits in arms, legs, could be speech deficits, could be eyesight deficits, could be all sorts of deficits. So that part like that part was the part that intrigued me the most that you felt that even though you’re doing such a large amount of work in that space of helping people with their rehabilitation, that even then when you sent them home, you felt that they were ill equipped is that right? Was it a kind of a sense that you need to equip them more, or further, or what was it?
Intro 13:05
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 13:07
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Dr. Kenneth Monaghan 14:11
I suppose I think that in terms of rehabilitation, a lot of people are searching for this golden ticket therapy that is the one thing that’s going to get them better after stroke naturally, everybody’s looking for that. And there’s probably from what I have read over the years and experienced there’s probably more than 30 different therapies that there’s evidence there that are safe that can be carried out and and claim to you know, help people to recover physically after a stroke.
Dr. Kenneth Monaghan 14:48
And each one of those is worth trying for somebody at home. There’s no doubt about that. But what people have to realize that there’s no one brilliant therapy that will get you better. And people also have to realize, from my experience that you have to try and become active in your rehabilitation program and become active in your decision making. And that’s a huge part of it.
Dr. Kenneth Monaghan 15:16
Because what I find not just with stroke patients, but people in general that I work with as a physiotherapist or physical therapist, patients tend to have a passive approach to medicine, I find. And what I mean by that is that and I do this myself, I found myself in you know, I was in with an orthopedic consultant only recently, because I have arthritis in my hip. And I actually even though I know, the exercises that, you know, should be done for arthritis in my hip, I actually felt almost intimidated to ask the consultant or to tell him a little bit about what I knew, in case I insulted him.
Dr. Kenneth Monaghan 15:57
Because I actually took that passive approach. And I think that this is something that’s going to have to change over the coming years where, you know, and I’m interested to hear your opinion about this Bill. But I think that patients, stroke survivors should try as many therapies as they possibly can, that are safe to do but when you try them, you instinctively know that one feels good for you, or, and helps you or that’s one that kind of you feel, is doing something for you.
Dr. Kenneth Monaghan 16:34
And on the other hand, you also know ones that don’t work so well. So even though my research group is working on a number of different therapies, which are innovative, and the examples would be mirror therapy, and the idea of sensory substitution and cross-education, there’s no guarantees that those things will be the ones that you should do.
Writing The Book Lights Mirrors Action

Dr. Kenneth Monaghan 16:56
But when I was writing the book, I was determined that I wasn’t going to overload people. So I was going to choose and it’d be six different therapies that people could at least start off with. And that might, you know, people might keep going for, you know, four weeks program because, and get a taste for those. And, more importantly, what I wanted to do was I wanted to tell you through the book that education and kind of information is so important before you even start.
Dr. Kenneth Monaghan 17:34
Because I suppose there’s a fabulous book that I’ve read, I don’t know if you’ve seen it, it’s called the expectation effect, and it’s by a man called David Robson. And you’ve probably heard that expression, if you think if you think you can, or you think you can’t, then you’re usually correct. And that’s actually so true in life is that, you know, if you if you believe that you can do something, are you can you believe that something is going to work for you. And then it there’s a much, much better chance that it will work for you.
Dr. Kenneth Monaghan 18:09
And it’s been proven through research that, you know, when doctors explain to patients, what therapies they’re going to be doing, or what medicines are taking, and what what what the likelihood is that they will work and how they work and explain that beforehand. So, so almost like priming the person before they start the therapy, they tend to do far, far, far superior than if you don’t explain that to people. And what I wanted to say to caregivers was that caregivers are overwhelmed when they go home.
Dr. Kenneth Monaghan 18:41
And because they’re taking on all these new tasks, your wife, I’m sure, probably had to start dealing with financial things, you had to do all the tasks around the house, you’d make all the decisions a lot that you were doing beforehand. And all I wanted to do was I wanted to kind of take one area off her hands, the area of you know, what should bill be doing each day.
Dr. Kenneth Monaghan 19:02
But I wanted to also say to her that, you know, you actually can be a brilliant person to help him because a big part of that, that help is just explaining certain things to him. So explaining to him that there’s a thing called Neuroplasticity, for example.
Dr. Kenneth Monaghan 19:22
Just knowing that, like if you’re sitting in that hospital bed a week before you go home, if that’s explained to you that there’s a thing called Neuroplasticity and that everything you do and every you know, can can actually make your brain change and can help you to build new pathways and that Neuroplasticity can happen at any stage, no matter how long you’ve been after a stroke, if that’s explained to you in a very easy to understand terms.
No Place Like Home For Stroke Recovery
Dr. Kenneth Monaghan 19:47
Well, I think that’s motivation, I think to hear that actually is a very good starting point because now you’re starting to think well, maybe there is, you know, maybe there is things I can do. If your wife kind of explains to you a little bit about, you know, how therapies can be done and how, why your home, for example, can have huge, huge advantages that you don’t have in a rehabilitation center.
Dr. Kenneth Monaghan 20:12
And, one of those advantages is that, and again, another author that I’m very fond of is a professor in Trinity College in Dublin, Ian Robertson, he’s written a fantastic book called The Winner Effect. But what Ian says is that, when I read when we’re in our own home environments, our bodies potentially produce a little bit more testosterone, which is that hormone that helps us to kind of rebuild ourselves.
Dr. Kenneth Monaghan 20:40
And, we get that because the familiarity of being in your own house, I feel that too, you know, when I’m when I’m in somebody else’s house, and I don’t know, you know, where the cops go or where the knives are, where the jam is, you know, you feel so uncomfortable out of it, when you’re in your own home, and you know, everything and of course, the sights and the sounds and everything that are there.
Dr. Kenneth Monaghan 21:04
Apparently, this goes on in our bodies that we wouldn’t be aware of. And that gives us an actual physiological benefit or advantage that we wouldn’t have been aware of. And, and we can harness those things. So if you as a caregiver, your wife is expected caregiver kind of says those two things to you before you go home. She said, Bill, look at a read, you know, I’m reading research and when you go home, your home is actually a brilliant place to do rehabilitation because of ABC and D advantages.
Dr. Kenneth Monaghan 21:33
And when you go home, you Neuroplasticity is thing that can happen in your brain, and you have to realize that, then that’s going to be more motivational. I think I am I suppose I better ask you Do you know, would you feel that that’s something that, you know, if you go back to those days when you were in that hospital, if somebody kind of explained those things to you in a very simple to understand way? Would that have been a help?
Bill Gasiamis 21:57
Absolutely, it would have been a help. One of the big challenges is being in hospital and the whole experience, however, also being grateful that I’m in hospital, because I’m being cared for, and looked after. But at some point, you know, that all comes to an end. And you do want to get home. And I suppose I was keen to go home sooner than I was meant to.
Bill Gasiamis 22:21
So I was given a two-month stay. But I went home after four weeks, something like that about four and a half weeks. And one of the things that motivated me was Christmas being at home for Christmas, because exactly what you said, you know, I wanted to be home for Christmas in my own home with my family, the familiarity of that the whole, I didn’t want to spend Christmas in a hospital.
Bill Gasiamis 22:50
So I put a lot of work in to get home. And when you’re talking about Neuroplasticity, because I had almost three years of dealing with multiple blades, and then brain surgery and then overcoming the deficits after brain surgery, overcoming the fact that I couldn’t walk again and use my left side. I did a lot of research and tried to understand what I could do while I was being passive.
Bill Gasiamis 23:18
And while I was waiting for everyone to fuss about around me, I understood that Neuroplasticity was a thing, I must have picked it up from somebody else. But I took a deep dive into what Neuroplasticity is and how I could use it and harness it. And then I was doing what you mentioned in one part of your book, which is to imagine myself walking again.
Bill Gasiamis 23:42
And while I was sitting there in my bed doing nothing, and had plenty of time on my hand, I was imagining myself walking, and I would see myself in the rehab room, you know, doing the perfect walk even though I couldn’t do the perfect walk. So that when I got to rehab, I had given myself some additional neurons to start firing and wiring. So that when I did it, it was much more familiar to my my leg which had the deficits.
Bill Gasiamis 24:14
And then I suppose my theory was that I was going to be able to reduce the amount of time that I was going to be needing to learn how to walk again. And then I read your book and in your book, it basically says exactly that. And you know, it makes me feel it makes me feel well not validated. Not that I’m looking for validation. But I suppose for lack of a better word validated that I was on the right path.
Bill Gasiamis 24:42
Because not only have I thought of that, in 2014 You’re talking about that to people right now and you’re telling them to do that. And I can’t remember where I learned that. And I perhaps haven’t told as many people as hopefully, you’re going to get to tell when you see them every single day in your practice as well as from your book.
Bill Gasiamis 25:01
And that’s what people need, they need to know that without any additional effort, without any additional cost, without going anywhere and spending all their time traveling to and from and organizing a taxi because they can’t drive anymore or somebody to drive them, all they have to do is just imagine themselves walking.
Bill Gasiamis 25:21
And if they like meditation, or they’re curious about meditation, they can roll that into their meditation, they can imagine themselves walking with a quiet background of a track, that’s just playing, keeping them calm, keeping them grounded, and centered, and all that kind of stuff and creating the right environment for Neuroplasticity to occur. So, my wife didn’t know about Neuroplasticity, and neither did I, we had no need to know about it until we were sent home with all of this list of issues that you have to deal with and overcome.
Bill Gasiamis 25:57
And it that would have taken a little bit of that weight off of us. And it would have made it a lot easier and allow a lot and I know plenty of stroke survivors who’ve I’ve spoken to who, unfortunately, before they get to go home to hospital, they have a terrible interaction with a doctor who will say something ridiculous, like, you’re probably not going to walk again. And if if I have a hate, in this whole experience that I’ve ever had, with one of my biggest hates, is that doctors still to this day, stay there. And then you guys and loved ones and caregivers have to have to undo the potential damage that that might create.
Dr. Kenneth Monaghan 26:48
It does. I mean, again, back to the book that we talked about the expectation effect, you know, if your expectations are positive, and positive things will happen because your body responds because your brain is so much like a pharmacy. And in chapter six in the book, just to mention, as I talk about the famous milkshake experiment, I think you’re probably familiar with that Bill.
Bill Gasiamis 27:14
I’m familiar with the chapter. So before we go into that, grab the copy of your book, just hold it up to the camera there just so that we can show people who are watching on YouTube, what the cover of the book looks like. It’s called Lights, Mirrors, Action, we’ll talk about that title in a minute. But tell me about the milkshake effect chapter six of the book.
The Milkshake Effect

Dr. Kenneth Monaghan 27:39
Yeah, the reason I was mentioning it is that, to me, this is a phenomenal thing is that. So an experiment was done in Stanford University where as, a group of students were given a milkshake and they were told that it was high in calories, so much so that you wouldn’t need to take anything for the rest of the day. And the other group of students were given a milkshake low in calories, told that it was low in calories, so much, so you probably need two or three meals for the rest of the day.
Dr. Kenneth Monaghan 28:08
And what they were measuring was this hunger hormone called ghrelin, and they were interested to see how much of it was produced for the rest of the day. And as you can imagine, what they found was that the people who believed that they were having the high calorie milkshake, they produced three times less hunger hormone in their bodies. For the rest of the day, of course, the milkshake was the exact same, which they didn’t know, than the people who believed that it was low calorie.
Dr. Kenneth Monaghan 28:37
Now that is an astonishing and a phenomenal fact, just by itself, because there is no other explanation to explain why that would happen, except that your brain responded physiologically, to what it believed psychologically, it’s so simple. So when you hear that, now you start to realize how important and how impactful it can be, for people to say positive things to you and people to say that you know, you’re likely to have recoveries or you know, to kind of explain how therapies work and why they would work and so that your understanding and your expectations such is a positive one and that’s that’s such an important message to get across.
Dr. Kenneth Monaghan 29:30
As you were speaking earlier, Bill what I was thinking about, again, with Neuroplasticity was that I first encountered I suppose I really first encountered the idea of Neuroplasticity from from who I think is a brilliant, brilliant author and researcher is Norman Doidge, who has written those, you know, those fabulous books, the one called The Brain That Changes Itself.
Dr. Kenneth Monaghan 29:54
And when I got that book, whatever number of years ago at That was very much like a lightbulb moment for me because you know that on the simple understanding that our brains are changing every milliseconds that we’re alive and everything we’re doing, so me talking to you now here watching you, my brain is actually changing in response to that. And that’s, that’s such an important message to tell people.
Dr. Kenneth Monaghan 30:25
Because it allows you to realize that this process can kind of go on for longer than, than the six to 12 months, which was kind of the myth that people had, when I first started 30 years ago as a physical therapist. And that was the message that was sent to everybody and gender, we were trained this way, we were told that, you know, if a patient got, you know, between six to 12 months, that was really what the recovery was going to be. So without 12 months, you didn’t have a full recovery.
Dr. Kenneth Monaghan 30:58
Well, then you felt then that that was it, that’s the end of the line for me. So for somebody then like Norman Deutsch, to write a book that discusses so many different new technologies and cases and and mentioned the word Neuroplasticity and explain what that means that your brain can repair itself. And that that was phenomenon that that was brilliant.
Dr. Kenneth Monaghan 31:21
And then what so our research group, in the university in Ireland where I work with, I almost use Norman’s book as a template for some of the projects that we were doing, because, and that’s where the idea of sensory substitution came along, which we might discuss at some stage. But what was brilliant as well was that I had been, I had been hugely interested in the whole idea of repetitive practice and kind of repetitive hours of work. And where I first heard about this or read about this was an author called Malcolm Gladwell, who wrote a brilliant book called Outliers.
Dr. Kenneth Monaghan 32:05
And in that he talked about this principle of the 10,000 hours rule. And the 10,000 hours rule was something that was being applied to sport and to business. And essentially, it said that, if you do 10,000 meaningful hours of practice in any area of life, then you can become an expert. And there’s, you know, Tiger Woods would be an act would be an example of doing that in golf, as some of the chess grandmasters.
Dr. Kenneth Monaghan 32:31
And when I read that, and because I was so involved in stroke research at that stage, that’s, that’s when I really felt that that principle could be applied to rehabilitation as well. However, the most 10,000 hours or that principle is a lot of hours. So if you’re sitting in your home, as you know, yourself, no matter what therapy I give you to do that kind of repetitions and things, it’s hard to motivate yourself to keep doing that.
Dr. Kenneth Monaghan 33:01
So an important principle that we mentioned in the book, and you, hopefully you would agree with this is that it’s very important to see bits of progress, so that you can prove to yourself that you’re making, making recovery. And actually, Ian Robertson in that book I mentioned before the winner effect, he again says that when you see a little bit of recovery, so for example, Bill, if you could move your arm to here, and you use a measuring tape, and you know, you can move it to centimeters more, and you’re measuring that, even if it’s not the most accurate measurement, every time you see that progress, again, your body responds by producing this extra testosterone.
Dr. Kenneth Monaghan 33:39
So it’s like these little wins help you to be more likely to get more wins in the future, if that makes sense. So So now you’re going to building up the the home environment that has the kind of extra testosterone, if you can measure in a very simple way progress, you get the testosterone. And if you do this repetitive practice, and of course, what was very lucky for me, I suppose in one way, it was very close to when I had the book finished. The Irish and the UK and American Stroke Association’s came out with new clinical guidelines are they kind of redefined the guidelines.
Dr. Kenneth Monaghan 34:14
And one of them, well, two of them. One was that they for the first time said that repetitive practice is definitely evidence, you know, there’s evidence to say that this is what stroke survivors should be doing, or it gives them the best chance for recovery. So that was definitely backing up what what I was thinking and what I was talking about. And then the second was that stroke survivors, if possible, should be aiming to do you know, between two to three hours of little packages, you know, of therapies during the day that they find work for them.
Dr. Kenneth Monaghan 34:48
And if it’s possible at all and again, people get tired and of course, fatigue is a very big part of your recovery and it’s and and that’s, you know, you have to have Is the juggle with those things. But if possible, you’re aiming to do two to three hours of therapy every day. And when I heard this, this was this was fantastic for me, because this is what I had believed all along, or that I had kind of the message that I had been portraying in the book. So it was great to have the backup from the professional associations to kind of say that this is really what we’re looking for.
Bill Gasiamis 35:24
Finding similar anecdotes as well, like, there’s people that I’ve interviewed who do little and have, you know, small outcomes, or that don’t have such big results yet. And they might be doing a little because they are still very fatigued, and they still grappling with all of that. And then there’s people who have a stroke, and then running ultra marathons. You know, so the, the spectrum is very vast, it’s huge, and there’s so many different versions of recovery in between.
Bill Gasiamis 36:02
But it is true that with time, people will tell us that, you know, I’ve interviewed a lot of stroke survivors that are 10 years out and 15 years out, and then they’ll tell me that they’ve had gains in the last few years. And they didn’t expect that it was something that just came out of the blue. And it just sort of showed them another level of recovery that kicked in.
Bill Gasiamis 36:26
And it was just as a result of going about life as normal, you know, doing business as normal, which is going about their home, doing the tasks, perhaps, you know, being a husband, or a wife, or an employee, whatever they were, and they just found out that all of a sudden that they had this wind, and they might not be able to explain it.
Bill Gasiamis 36:47
But if you dive a bit deeper into it, and you ask them what they were doing different or what they were doing the same, they might tell you that, you know, they always spent five minutes helping their hand to move or, you know, picking something up and putting it in a different position. And there is no doubt about it, that the Neuroplasticity of work.
Bill Gasiamis 37:12
And research does show that the more you fire off a set of neurons and neuronal pathway towards a task, the more likely that neuronal pathway is going to become embedded in the brain. And as a result is going to be there to support that movement. And also perhaps bypass the original path for that particular task. Now, of course, obviously, we know that the stroke survivors who will struggle with some exercises because they might have spasticity in the hand, so the hand might not physically open to get them a result that they specifically want.
Bill Gasiamis 37:52
But we’re talking about here, in general, even if it’s not a task, by opening the hand, perhaps it’s walking and walking doesn’t look like it did before stroke. Even if it’s moving in an upright position that’s hunched over or in a different kind of way than it used to be. It’s still walking, and it should be considered a wind. And I highlighted in section three of your book in the table of contents, chapter nine, I highlighted a win is a win.
Bill Gasiamis 38:22
And that’s exactly, we’re going full circle. Now back to that whole idea of no matter how little the gain is, or the winners, it’s really important to recognize it and celebrate it and make a note of it, and refer back to it every once in a while and mark it as a point of a place that you’ve arrived so that you can go back and see in 12 months, how far you’ve gone.
Bill Gasiamis 38:49
And one of the things that I’ve said previously to caregivers is that it’s a good idea to record their loved ones or their patients or whomever. And then at the six month mark, show them the progress because there will definitely have been progress in some way, shape, or form. And it’s really important to be able to give them a picture of what that looked like. I remember going to counseling and seeing my psychologist.
Bill Gasiamis 39:16
And she initially, you know, six to eight weeks out picked up that I wasn’t speaking, like I was previously that I wasn’t able to form and complete sentences and my thoughts were all over the place. And then every once in a while, she’ll remind me, you know, six weeks ago, you weren’t able to have this conversation or answer this question like that, do you remember?
Bill Gasiamis 39:41
And I would say I don’t remember but she would encourage me and tell me that it’s definitely the case. And then that would make me feel better. And then that would allow me to celebrate that win and take a little bit of the load off. And I’d feel a little bit more encouraged to continue going after you know the recovery.
Dr. Kenneth Monaghan 40:03
There’s two or three things you said there that are there, they’re actually huge, very important. And I agree with completely. And the last thing that you’re talking about is the recognition of progress. And I see this, I run a practice a couple of evenings a week, in my local town. And this is the thing that when patients come in to me, they can never tell whether they’ve made progress for the most part unless they’ve made huge progress.
Dr. Kenneth Monaghan 40:32
So I suppose the analogy here is, is a bit like our kids, we never really see them getting tall in front of us, because unless, unless we’ve measured, you know, their heights on the walls, and have that famous marks on the walls thing that goes on, because when you know, granny, who hasn’t seen them for six months comes in, they say, Oh, my God, James, and Alan got so tall, you know, and you’re kind of going to get there.
Dr. Kenneth Monaghan 40:55
And of course, that’s the reason because it’s if it happens so slowly in front of you, you can’t see it, and patients are the same. So if I have patients that have, you know, sore shoulders, and you know, they can only move their arm to here, when they come to me, but they can move to here, the next day they come in, just to be able to prove to them that they can do that is almost like phenomenon, they just as you say you felt great when it was proven to you that you were doing better.
Dr. Kenneth Monaghan 41:22
And what I was saying in the book was that in terms of a very simple thing to do, and I know that this is a very, a lot of stroke survivors find this very difficult, but just to take a video even even, you know of walking up the corridor. So I am I’ve been working with a stroke family and close to us over the last few months. And we actually did this at the start, we took the you know, the we took the walking and he was walking with a cane, and you could see the kind of, as you said, the very slow walking and the steps were very small.
Dr. Kenneth Monaghan 41:55
There’s no kind of continuity with it. And we use take a video every two weeks of the walking from, you know, more or less the same position. And it was amazing just to see the difference and even show that to the stroke person themselves. And you could just see the smile on their face. You know, they it was just a realization that it had changed so much from that.
Dr. Kenneth Monaghan 42:23
And that was really such a brilliant thing. And you see the other thing that you mentioned there, which which I which I’m hugely interested in was the whole issue of you were talking about your caregiver or your wife, acknowledging what you were doing and kind of recording what you were doing. And I think this is a very, very important point, because there’s a psychologist in America he’s called Dan Ariely.
Acknowledgement Caregivers And Recognizing Progress In Stroke Recovery
Dr. Kenneth Monaghan 42:47
And he’s written a brilliant book called Predictably Irrational. And one experiment that he doesn’t know if it’s okay to mention it is he doesn’t experiment with Lego Bill. And what he does is he takes people to groups of people, and he gives them the he’s giving them sets of Lego that maybe takes them 10 minutes to make, and he’s paying them to do it. And what he’s interested in is, every time they do a Lego set, they come and get the next one, but he pays them a little bit less for the next one.
Dr. Kenneth Monaghan 43:21
And he pays less for the next one. And he wants to see at what point do people feel that it’s not worth their while to keep going. However, there’s a little trick to the experiment in that when one group of people come up with their Lego set made and they come to the researcher, the researcher looks at the Lego set, they acknowledge it and they say well done that looks very good.
Dr. Kenneth Monaghan 43:48
And then they place it behind them in a place on a shelf where the person can see it. The second group, they come up the researcher, they look, they don’t say anything much they kind of nod, and then they break the Lego piece up and they put it in the Lego bin under the table. And then they hand them the next set, they pay them for that one. And this is what goes on.
Dr. Kenneth Monaghan 44:12
And I suppose you can imagine what would happen, the group that where their work was acknowledged and where their work was recorded, and basically had something there visually to see where they had a bit of pride in what they were doing. They kept going for almost twice as long as the people where the work was not acknowledged where there was no record of it being done, even though that we’ve been paid the same thing.
Dr. Kenneth Monaghan 44:36
And the reason I’m mentioning this is that this same thing happens in human nature in every aspect of life. I mean, I see it in my own work sometimes, you know if if somebody a manager or somebody says to you, God Ken you’re doing a great job, which doesn’t cost anything. It’s a huge motivation keeps you going. If you’re a stroke survivor, and somebody you know is acknowledging that you are, you know, Bill, you’re doing fantastic work.
Dr. Kenneth Monaghan 45:02
Actually, you know that we record how many repetitions you did today, with keep a log of it, we’ll actually see that the log, you know, is growing each day. Or if it’s steps, we record the steps on our step counter or Fitbit. And we have that. So we at least can look back and say that look at a month ago, this is what we were doing. Look at the volume that you’ve done fairplay to you’ve done really well.
Dr. Kenneth Monaghan 45:26
And a caregiver can easily have the qualities to do that. And it’s one of the things that they don’t realize is so important. Just to just do that record what people are doing knowledge, what they’re doing, praise them for it is like in the business world, we do much more, we can do twice as long, because we just that’s the kind of motivation. And I think that’s a very interesting concept that Dan rarely mentioned. And I think I think we should be very cognizant of that.
Dr. Kenneth Monaghan 45:56
And then the final thing that you mentioned, just again, with your walking was that, I suppose over my 30 years, I kind of feel that, as I said to you earlier, there’s there’s probably 30 therapies that people can do. But I fully believe that it’s the sequencing of therapies is actually an important thing that people don’t think about. So if we have four or five therapies that I think you can do during the day, and of course, this is the beauty of being at home, as well as that, you know, the night before, we might have planned that you’re going to start your therapy at 10 o’clock or 10am.
Dr. Kenneth Monaghan 46:36
But when you wake up in the morning, and you feel very tired or extra fatigued, because of whatever’s going on your life, you can throw that out to 12 o’clock or one o’clock. But when you’re in a rehab center, you don’t usually have that flexibility, you know, your therapist has your therapy scheduled at a certain time. And if that suits the way you’re feeling that they’re great, and if it doesn’t, sometimes that may be means you might miss out on your therapy on a particular day.
Dr. Kenneth Monaghan 47:00
But if I would feel that, and I suppose I use this analogy of lights, MERS action a little bit to stand for the sequencing. So I would feel that lights kind of really, you know, is standing for those therapies that kind of warm up or wake up your body and I would include walking as being one of the first things that should be done. So if if you can walk and if if, if you’ve been encouraged to do walking, and you you believe about walking and you know, the benefits, then I would be saying to you let walking be one of the first things you do each day, because it’s kind of warming up your body.
Dr. Kenneth Monaghan 47:35
And it’s kind of you know, getting that brain producing those growth factors and hormones that are produced that probably allow you to benefit a little bit better later on. And I would feel that then after being warmed up, that if you’re going to do some simple stretches for your limbs that you know, keep the keep you from developing contractures. And you know, there’s some very simple stretches that can be done.
Dr. Kenneth Monaghan 47:59
And I mentioned some of those in one of the chapters as well, I would feel that’s that the correct place to do that. And then after that, then we’re into our therapies that can kind of excite the brain or, you know, energize the brain. And that’s, that’s where, what, what I feel are the kind of mer therapies or the sensory substitutions or the cross educations are those therapies that kind of potentially excite your brain and allow more Neuroplasticity to potentially take place.
Dr. Kenneth Monaghan 48:28
And then after that, the normal things you do in your day, you know, your normal functional activities that you would do around the house, like lifting things, you know, cutting things, opening jars, while those things I feel, then that you have a better chance that when you do those, because you’ve kind of set the environment in your brain to be, you know, you know, energized and kind of excited, I think that there’s a better chance that you will recover a great new pathways because of that. So I would feel that sequencing is quite an important thing as well. So I don’t know how you feel about that.
Bill Gasiamis 49:01
I agree with that, and flexibility, especially in your timeline and your shedule because if you wake up in the morning and you’re feeling terrible, then nothing’s getting done. Nothing has been done. Really, I still experienced that. Sometimes, you know, and I’m 12 years out. So I wake up in the morning, if I had a bad night’s sleep, there is nothing getting done in the morning.
Bill Gasiamis 49:22
It doesn’t matter how motivated I want to be or I think I am. It’s just not getting done. And the best thing to do the safest thing to do is to do nothing. And then allow myself to slowly warm up, wake up whatever the word is that I need to to get to that particular day. And then after that I can definitely consider doing that particular exercise of Sometimes I wake up in the morning at six and I feel like I need to go to the gym, and I’ll wake up in the morning and I’ll go to the gym at six in the morning.
Bill Gasiamis 49:58
Sometimes I will not get there. for the whole week, because I just cannot get my head around getting there. And you know that going to the gym and not feeling good about my body means that I don’t put a good exercise a good effort in into the weightlifting. And perhaps my form is out. There could risk injuring me or pulling a muscle or causing more long-term damage. So the flexibility and not being hard on myself for not doing the gym today, that’s really important as well.
Bill Gasiamis 50:29
So waking up in the morning and deciding, I’ve got 25 emails to answer. And then being really upset with myself that I can’t answer, it doesn’t also help. So it’s like, very important to be able to be flexible. And to not give yourself a hard time to give yourself a break. And to say, look, okay, we’re having a rough day, today’s not the day, let’s fight the battles we can fight when we can fight him. And it kind of puts you in a sense of more of a sense of control, right? Not that we’re in control of anything really.
Bill Gasiamis 51:05
But in the sense of like, I’m gonna go with the flow. And when you’re in flow with your particular mood, or your energy levels are experienced, when your head is on board at the same rate as your body, then you can just get through it. And I feel like the healing time decreases as well, like that recovery from that terrible night’s sleep decreases. If I’m exerting energy and being hard on myself and giving myself a hard time as well as being low on energy, when I wake up, it’s just going to make the day worse, and it’s going to get things happening worse, you know, my take it out of my wife or I might interact badly with one of the kids.
Bill Gasiamis 51:44
And it’s all things that I don’t want to be doing. So that’s become really good at trying to go with the flow and try to be flexible with my timeline. So that nobody is expecting me to respond to an email, because I haven’t set an expectation that as soon as you send the email, I will definitely answer it within three minutes. And then nobody is expecting that type of a response from me. So I can look at the lifter List of 25. And I can get to them in my own time. And I might feel good about the fact that I answered three of them, or four of them today.
Bill Gasiamis 52:24
And the others go in to do this for tomorrow. And if I wake up in the morning feeling great. Well, then I’ll I’ll go through a few more and send them out the the things that you’re suggesting a very common sense things there. It doesn’t sound like you’ve rewritten anything, or created anything spectacularly new. And that’s what I like about your book, it is back to basics. It’s just standard stuff that all people may already have known that they’ve forgotten about, or they’re not completely.
Bill Gasiamis 52:58
They’re distracted by other things. So they just haven’t come back to those standard, simple things. And that’s what I like about your book, it’s very it’s not very scientific, from the point of view, or we’re not reading literature, pieces there that are about, you know, the studies and the research and the data, we’re just actually taking examples, you’re applying it to common day, everyday life, and people can definitely benefit from it.
Bill Gasiamis 53:26
Caregivers, most importantly, can definitely benefit from it. In that time where maybe the person who you’re caring for is resting or they’re not in your care for the moment or you’ve got some time to yourself, you can read it. And as a result of that you can make your your role as a caregiver a little easier, I feel.
Dr. Kenneth Monaghan 53:49
Yeah. Well look when I was when I started writing the book. I was working with three stroke survivors and their families and very closely in particular, I was obviously, you know, I had heard and interviewed lots of stroke survivors hundreds over the few years beforehand.
Dr. Kenneth Monaghan 54:09
But what I was hearing was that it was very important to write the information in a very easy to understand way because, you know, if it’s if it was a caregiver, then they don’t have help, you know, they didn’t have health background or healthcare background and you had to try and write it in some way that it was very easy to understand.
Dr. Kenneth Monaghan 54:28
And actually to be honest, I’ve even my wife Maria, I, she didn’t read the book or until relatively recently and I actually she said to me that she was almost a little bit afraid to read it because she thought that she wouldn’t understand it because it was she was expecting it to be a lot of medical jargon and a medical terms as you just said.
Dr. Kenneth Monaghan 54:50
But actually she she she enjoyed it because she said it was just very simple. But what just to say to people that there’s there’s about 140 footnotes of evidence that goes along with the information. So if the want the evidence of your healthcare professional and you’re reading it, it’ll direct you to where the evidence is.
Bill Gasiamis 55:13
It’s evidence based, but it’s not a, it’s not an academic.
Dr. Kenneth Monaghan 55:22
No, and I set out and also to I found from looking at an awful lot of stroke books that I had read, obviously, when I was researching that a lot of stroke books tried to do in my mind a little bit too much, because they try to tell you everything about stroke, they tried to do the medical side of things, and it’s driving, you know, the different types of strokes and the medication for strokes and all those things.
Dr. Kenneth Monaghan 55:45
And I kind of felt that, you know, I don’t want that part, you know, we’re going straight in here into, it’s a week from your discharge home, you are going to feel disappointed, you’re you’re not looking forward to this because you’re going to be disappointed. And I want you to so many to give you this book and read it are you give it to your caregiver who’s also going to be stressing, because they’re not looking forward.
Dr. Kenneth Monaghan 56:11
And it to give you confidence, it gives you a kind of a going, oh my god, like these are the things that go on. If I explain this to my stroke survivor, that hopefully will motivate them that, you know, when they get home there, there is a program. And then I wanted to kind of have a definite, you know, I’m not saying that the program I’ve laid out is the absolute recipe because it isn’t the recipe, but it’s a recipe that can be tried. And it’ll get people going, and it’ll give them a sensible one to try and do.
Dr. Kenneth Monaghan 56:43
Now, and it’s lovely for you to say to me that, you know, it kind of sounds like we’re taking common sense things and we’re just repackaging them a little bit. And that’s exactly what we do. A lot of times, I mean, a lot of, you know, famous therapies and things, I often say the likes of Pilates and things like this, Pilates is a is a hugely successful therapy that talks about, you know, doing core exercises, but when you break it down, Pilates is very simply simple strengthening exercises, and sometimes simple, you know, stretching and things are incorporated.
Dr. Kenneth Monaghan 57:16
And what it becomes part, because there’s a you know, there’s, there’s a whole life around that and people have become to love it. And it becomes popular. But essentially when you know, but lower down. We haven’t, they haven’t created anything really too new. It’s just how they different simple exercises are arranged into a program that works for people.
Dr. Kenneth Monaghan 57:43
What is discussed in my book is are some innovative term, I suppose, I use the opportunity to actually introduce three different types of therapy that maybe people might not be so familiar with, because this was the focus of my research group. And those therapies were number one mer therapy, which which a lot of people are used to, but actually, I’m quite surprised because I spoke to a stroke family in Canada only recently, and they had never heard of very therapy. I was very surprised at that.
Bill Gasiamis 58:20
That person had a deficit in one of their arms?
Dr. Kenneth Monaghan 58:24
They did well, it was actually the son of the family that had the stroke. And and actually they had been to lots of different or, you know, different places looking for kind of solutions. But they never heard of mirror therapy, which I was surprised about. And I don’t know if this is common, it was on a snapshot. But when you’re involved in these therapies, you always assume that everybody knows about them.
Importance of Sensory Substitution
Dr. Kenneth Monaghan 58:51
So to hear that somebody didn’t know about that was reassuring for me that it was good then to be talking about it. The second thing we talked about is the whole idea of sensory substitution. And this is a very interesting area. And is it okay to talk about it a little bit?
Bill Gasiamis 59:09
It is because I’ve delved a little bit into sensory substitution and I interviewed for episode 200. I interviewed Cheryl Shiltz, who was a lady who was one of the first people to substitute inner ear and her balance with her tongue. And that work was done by Paul Bach-y-Rita and his team. Some researchers from Massachusetts, from the University somewhere in Madison, Wisconsin or whatever, way around that goes.
Bill Gasiamis 59:47
And Cheryl is like patient number one in this particular field in that when she was able to reestablish her balance by training her tongue to take over the role of her damaged in a year. It opened a whole world of possibility for people with all sorts of issues. So I’d love to hear about your thoughts on sensory substitution.
Dr. Kenneth Monaghan 1:00:19
Well, it’s a I mean, it’s brilliant. I just like yourself when I read Norman Doidge’s the brain that changes itself. And I read that chapter about Cheryl, and they were termed wobblers. So essentially, when women who were pregnant, were put on an antibiotic afterwards, if they needed it, they use an antibiotic called Gentamicin. And if you were on it for far too long, it destroys the vestibular apparatus in your ears, which is your balance mechanism.
Dr. Kenneth Monaghan 1:00:52
So these people’s lives were ruined, and she probably would have told you all that experience. And then Paul Bach-y-Rita developed this very novel idea that if the information from the IRS wasn’t, you know, working correctly and going up to your brain and telling your brain, how to control your balance, could other information be substituted from it. And of course, what he did was he created a like a piece of chewing gum or a piece of plastic with sensors on it that glow on the tongue, as you’ve mentioned, and they were attached to like a Bob the Builder helmet.
Dr. Kenneth Monaghan 1:01:24
So when the person when she went forward and backwards, a certain array of sensors were stimulated. And then when she went side to side, different array, and when so you know, and and what’s what, what was brilliant is your tongue is so sensitive here that the brain was, was able to figure out, the brain figures out essentially, those three different messenger messages, and it was actually able to kind of reestablish an ability to control balance, which is phenomenal.
Dr. Kenneth Monaghan 1:01:55
So when I read that, first of all, excuse me, I actually had a PhD student that was just starting off with me, and we thought, I thought we’ll get involved in this area, I think this is great. This is great potential. And we actually contacted an entrepreneur in London, I think, who had actually started off with the intention of setting up a huge business around creating tongue stimulators, because the whole science sounded interesting. And he was a very interesting character.
Dr. Kenneth Monaghan 1:02:28
But his the interesting became not so interesting when he wanted about $15,000 from us to get us involved in the research and essentially, do research that would have helped him to promote this. So we figured this wasn’t going to be possible, we didn’t have the money and also didn’t make sense to helps to help do the research in that area. So what we started doing was we, my PhD student, started investigating whether other senses, and that could also be used instead.
Dr. Kenneth Monaghan 1:03:01
And what he found what Peter Lynch found was, and we’ve published a number of papers on this, some systematic reviews, which is very good evidence, he found that tactile sense or touch sense or vibration sense, and is one sensation that has potential to substitute for missing information. The other was hearing our auditory information. So what we set about doing was, and again, the idea of sensory substitution is very much that if, you know, if you have a stroke, and you’ve had your arm and disability.
Dr. Kenneth Monaghan 1:03:40
The normal information that should go every day, and every moment up to your brain is not going in that fashion. So could we substitute something else, and what we’ve been working on in our lab is we created a device that, you know, if we, if we if we use, if a patient holds a sensor that gives a vibration, are they they and they hear a sound while they’re trying to stand and re re learn how to take weight on their legs. So that if they take a lot of ways, they they feel they get a very big sensation and hear a big sound if they take very little weight.
Dr. Kenneth Monaghan 1:04:25
They you know, get a small sensation and very small sounds and then there’s that sweet spot that you know the correct weight. We find that patients in our trials are doing really, really well with this they find that this is the brain is essentially figuring it out. And my analogy of this here is very much you see the glasses that I’ve on. I don’t know do wear glasses Bill, but I wear what’s called very focal glasses.
Dr. Kenneth Monaghan 1:04:53
So these glasses have three different types of lenses in them. So the bottom lenses for when I’m reading, and the middle is for when I’m looking at television and the top for when I’m driving. And when I got these at the start, I actually, I was so disappointed because I thought to myself, my optician has definitely got the prescription wrong here, because I can’t, I can’t use them. It’s It was ridiculous. I know. But after about almost a week, something clicked and they were perfect.
Dr. Kenneth Monaghan 1:05:26
And I I understand now what’s happening is that our brain, my brain has to figure out very subtly how to tilt my head. So that when I look at a book, The tilt happens at the right time, when I look at the television, a different tilt happens. And when I’m driving a different tilt happens, and essentially, the brain figures that out. And that’s was the that’s, that’s the principle or the concept behind sensory substitution, that if you can input more different information into your brain, while you’re doing a similar task, it’s possible for the brain to figure it out.
Dr. Kenneth Monaghan 1:06:04
And in my book, I wanted to try and come up with, you know, a cost effective or some version of this, and that patients can try at home in their own homes. And what I did was, I I’ve given the example of a digital weighing scales that people can use a bit like what I was discussing earlier that, you know, you can, you can kind of practice taking weight using this and making a small little platform for yourself. And then again, it’s just a cost effective way of using a kind of a, an innovative therapy, that that has huge potential down the line for rehab centers. But it’s a version that you can use at home yourself. So I don’t know, how does that sound to you?
Bill Gasiamis 1:06:44
That sounds fantastic. I mean, I love the idea that somebody who’s actually working in that space and doing the research in that space, because let’s face it, I mean, most of the people who deal with stroke survivors, they get them to the point of this is the best that we can do the the allocation of rehabilitation is over, the insurance company won’t fund it anymore. And then they’ll send that person home.
Bill Gasiamis 1:07:10
And then the task is up to the caregiver and the stroke survivor to do the rest of the work to get their leg working better, or, or doing more or, or whatever that is. And that would be a big setback. And like you said, some people will leave hospital, they’ll come home, they’ll feel better about that, but some will leave hospital or their rehabilitation, they’ll come home. And they’ll feel worse about that. Because they feel like they didn’t get enough rehabilitation.
Bill Gasiamis 1:07:39
So any tool that can do that can support somebody to get additional movement in their leg is fantastic, or in their arm. And I love the idea of connecting that to a sound and then also to a physical stimulation stimulus like vibration. And that teaches that the brain the difference in the in where the leg is in the world, because that’s what I had an issue with, I had an issue with neuro with proprioception, so my leg didn’t know where it was in the world.
Bill Gasiamis 1:08:14
So when I was first learning how to walk, I would stand very heavily, I would lean very heavily on my leg and jaw, my whole leg all the way up and down up to my hip. And it wasn’t pleasant. And then some days I’d be standing still at the bench at the kitchen, making a cup of tea or something. And then because I wasn’t moving my leg or it wasn’t in the right position, my knee would just collapse and I would trip over and I would fall.
Bill Gasiamis 1:08:46
So any additional information that my leg had, had to come from learning the hard way had to come from either jarring, and and putting my knee in the wrong position or dropping that knee and tripping over hat. That is a way of learning but it’s probably not the ideal way of learning. So yeah, I love that work, I do hope that you guys get some results that you can work with. And you can develop something that is going to make a difference.
Dr. Kenneth Monaghan 1:09:18
It is and I suppose look up behind all of this is a full race in a research lab that’s working to try and develop, you know, systems that allow patients to do therapy in their own home and maybe be monitored remotely. And that’s kind of the on one side of of what I’m interested in. But the book was was the idea was could you develop something that is you know, that you don’t have to buy fancy equipment for you don’t have to outlay a lot of money.
Dr. Kenneth Monaghan 1:09:51
And so those three therapies that I discussed, you know, mainly because they’re they’re very innovative things and they’re very exciting the potential of them, but you No mer therapy, you can buy a 10 to $15. myrrh, and you can place it on your table. And you can get huge benefits from you know, on your arms and in your legs. And again, as some people use that, and they find it phenomenal.
Dr. Kenneth Monaghan 1:10:13
And some people also then use it and they don’t like the concept of it at all. And that’s the way that it should be done, you should try these things. And you get your gut feeling whether they they’re there for you or not for you. The the concept of cross education of strengthening. And I know there’s a lot of, there’s a lot of people in one way or a wee bit a wee bit nervous about this concept. But it’s the idea that if if you go to the gym Bill, for six weeks, and you just strengthen your good side, your non affected side for six weeks.
Dr. Kenneth Monaghan 1:10:52
If you measure the strength on that side, after six weeks naturally is going to be much stronger. But amazingly, if you measure the other side, it could be potentially 30 40% Stronger, even though you’ve never done anything. And that’s another phenomenal concept as well. And it’s because there’s an overload of electricity that goes between the two sides to the brain.
Dr. Kenneth Monaghan 1:11:14
And so it’s more of a neural effect. But it bought, it’s a very definitely evidenced thing that could work. And what we were working on in our lab was the idea that we might do mer therapy and strengthening exercises at the same time. So we were combining both of those two things. But what for, for practical point of view, a person can buy a resistance band for less than $10 or 10 euros. And in their own home, they can, you know, attach that resistance band to a door handle.
Dr. Kenneth Monaghan 1:11:48
And there’s a very simple way of doing it when enough and they can do exercises on their good side. As long as people realize I’m I’m not advocating that that’s what you do all the time. But if you do that for 10 or 15 minutes as a little package during the day, then you potentially can benefit from that cross education effect. Of course, you have to do all the other things.
Dr. Kenneth Monaghan 1:12:11
And there’s nobody suggesting that you would ignore the you know, the affected side, I think people get a bit nervous, because they feel that maybe, maybe there’s a suggestion that we would just focus on the non affected side. And that wouldn’t make sense whatsoever. But I think during a day in your home, that there’s a place for you to kind of strengthen the good side of your body to try and benefit from those cross education effects.
Dr. Kenneth Monaghan 1:12:36
And I would feel that that type of therapy is what we were saying there, it’s you know, after you’re walking, and you’re stretching, that you’re kind of doing one of these things to activate or energize your brain, I feel that that fits in there. And definitely it’s worth trying for people. And again, very cost effective and a very simple and can be built into a program very easily.
Dr. Kenneth Monaghan 1:12:55
And some of the patients that I’ve used this with absolutely love it, they find it very easy to carry out and you know, they feel like they are strengthening and all strengthening and all exercise is beneficial regardless, and some others don’t take to it as much. But it’s good to have the choice, you know. And so those are the three things that I suppose we’ve spent a lot of time really researching very, very deeply in our in our research lab.
Dr. Kenneth Monaghan 1:13:21
And then I’m bringing those then into a kind of a cost effective, very practical way that they can be done in the book, but more importantly, explaining to people about them and explaining to them in a simple to understand way so that you know, again, if your wife was back in those days, when you came home, that you know machine, I’d say to Bill, you know, there’s a thing called you know, murder therapy, and I’m just going to explain to you in a very easy to understand way, how it’s supposed to work.
Dr. Kenneth Monaghan 1:13:50
And you know what happens in your brain, supposedly, that makes you a better chance of recovery. And maybe we’ll we’ll spend $10. And we buy one and maybe maybe we’ll give it a go. And you see one of the things that I’ve done with the book, and hopefully this is successful is that I wanted to try and merge the book with some digital information or extra resources. So what I’ve done at the end of every chapter, I don’t know, they see when I probably sent you an advanced copy of the book that bill so you wouldn’t have noticed this.
Bill Gasiamis 1:14:24
The QR codes where there.
Dr. Kenneth Monaghan 1:14:27
Yes. So you can see that at the end of the chapter. There’s a QR code and if you scan your phone over that, that then brings you to my website and to a resource where there’s YouTube videos that describe how to do the exercises, theres YouTube videos that discuss in very easy to understand, a way a summary of what’s in the chapters as well. And actually, recently, a friend of mine, his family had a stroke and actually I It was the first time I actually saw this working, that I was showing them the book, and the caregiver was reading it.
Dr. Kenneth Monaghan 1:15:09
And when I gave it to this stroke person, I hadn’t realized that their eyesight or their visual thing was a bit difficult. So they actually weren’t able to read it. And it was, it was actually brilliant than to just put on the videos, which described what I was doing, and they loved it. So I suppose another version would be to, to to record an audio version of the book.
Dr. Kenneth Monaghan 1:15:35
And maybe we’ll do that at some stage. But I’ve kind of tried to bring in these extra resources and hopefully that will build as time goes on, because I’ve set it up so that more worksheets or more documents can be attached. So that you’re hopefully we’re giving a little bit of extra value, you know, for what you’re getting.
Bill Gasiamis 1:15:56
I absolutely love it. As we wrap up. Can you just give us a brief website, tell people where they can find it, where they can buy the book, of course, we’re going to use all the links in the show notes. So people who are listening, who want to go and check it out, they can go to recoveryafterstroke.com/episodes. And we’ll have the show notes there with all the links. But Ken, can you just tell people where they can go and find the book?
Dr. Kenneth Monaghan 1:16:27
Yes, so my publisher is called Book launchers in America. And the book was, it was put up on Amazon, all Amazon sites from last Thursday. Now there’s a little bit so probably most of your audience will be this side of the world. So there’s obviouslyamazon.au.
Bill Gasiamis 1:16:54
Most my audiences are in the US actually that’d be.com I know from experience, whenever somebody is in their country, if they just put Amazon in the search engine, their particular home, Amazon comes up and then you can do a search like that.
Dr. Kenneth Monaghan 1:17:18
So if it’s amazon.com, then essentially just go to Amazon and put in Lights, Mirrors, Action, and the book will come up. There’s three versions of the book, there’s an ebook, and there’s the paperback that I just put up in front of you. And then there’s a hardback cover over it. And yeah, the easiest thing then is just to buy it through Amazon. Now. It’s also available through all larger bookstores as well.
Dr. Kenneth Monaghan 1:17:44
But most of them will probably need you to order the book and then they’ll get it in for you. But I think Amazon is probably the easiest thing to do. Because I know here, you know, most people will have prime and it’s probably doesn’t cost anything for delivery and things like that. And I my own website is www.lightsmirrorsaction.com. And there you’ll find also information about the book and extra resources and things.
Bill Gasiamis 1:18:14
Dr. Kenneth Monaghan. Thank you so much for joining me on the podcast. I really appreciate our conversation and you reaching out. I think your work is fantastic. And I know it’s going to make a difference to a lot of people.
Bill Gasiamis 1:18:27
Thank you once again for joining us on today’s episode. I hope you enjoyed my conversation with Dr. Monaghan, and found our discussion on stroke recovery and innovative therapies enlightening. If you’re interested in my book about stroke recovery, you can get your copy on Amazon by entering my name Bill Gasiamis, or by visiting recoveryafterstroke.com/book.
Bill Gasiamis 1:18:53
To learn more about my guests, including links to their social media and to download a full interview transcript to head over to recoveryafterstroke.com/episodes. A massive heartfelt thanks to everyone who has left a review, whether it’s for the book, or for the podcast. It means a lot to me. Reviews are essential for the success of the podcast and your feedback helps others discover this valuable content making their stroke recovery journey a little bit easier.
Bill Gasiamis 1:19:24
If you haven’t left a review yet, please consider leaving a five star review and sharing what the show means to you on iTunes and Spotify. If you’re watching on YouTube, remember to leave a comment below the episode, like the episode and subscribe to the show on your preferred platform to get notifications of future episodes. If you are a stroke survivor with a story to share, now is the perfect time to join me on the show. The interviews are unscripted and require no preparation.
Bill Gasiamis 1:19:54
Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Simply visit recoveryafterstroke.com/contact fill out the form, and I’ll get back to you with details on how we can connect via zoom. Thanks again for being here and listening. I truly appreciate your support. See you on the next episode.
Intro 1:20:21
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals opinions and treatments. 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 at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:20:51
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 1:21:16
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 1:21:40
Medical information changes constantly. While we aim to provide current quality information in our content. We did 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 Neuroplasticity and Stroke Recovery – Dr. Kenneth Monaghan appeared first on Recovery After Stroke.
1 hr 23 min
July 22, 2024Recurrent Stroke Survival: Maria Sclafani
Understanding Recurrent Strokes: Causes, Prevention, and Management
Introduction
Every year, thousands of people experience recurrent strokes, significantly impacting their health and quality of life. If you or a loved one have suffered from a stroke, understanding the risks and preventive measures for recurrent strokes is crucial. In this comprehensive guide, we’ll explore the causes, symptoms, prevention strategies, and treatments for recurrent strokes.
What is a Recurrent Stroke?
A recurrent stroke occurs when a person who has previously experienced a stroke suffers another one. Recurrent strokes are more common than many realize, accounting for about 25% of all stroke cases. Understanding the underlying causes and implementing preventive measures can significantly reduce the risk of recurrence.
Causes and Risk Factors
Causes
Previous Stroke or TIA: Individuals who have had a previous stroke or a transient ischemic attack (TIA) are at a higher risk.
Atherosclerosis: The buildup of plaques in the arteries can lead to blockages, increasing the risk of stroke.
Cardiac Conditions: Atrial fibrillation and other heart conditions can lead to blood clots that travel to the brain.
Risk Factors
High Blood Pressure: The leading risk factor for stroke, poorly managed hypertension can double or even quadruple the risk.
Diabetes: Diabetes increases the risk of stroke by accelerating the process of atherosclerosis.
Smoking: Nicotine and carbon monoxide in cigarettes damage the cardiovascular system.
Physical Inactivity and Obesity: Both are significant risk factors for stroke.
Symptoms of Recurrent Stroke
The symptoms of a recurrent stroke are similar to those of an initial stroke and may include:
Sudden numbness or weakness, particularly on one side of the body
Confusion, trouble speaking, or understanding speech
Difficulty seeing in one or both eyes
Trouble walking, dizziness, or loss of balance and coordination
Severe headache with no known cause
Prevention Strategies
Preventing a recurrent stroke involves a combination of medical treatment, lifestyle changes, and ongoing monitoring.
Medications: Antiplatelet drugs like aspirin, anticoagulants, blood pressure medications, and statins are commonly prescribed to reduce the risk of a second stroke.
Lifestyle Changes: Adopting a heart-healthy diet, engaging in regular physical activity, quitting smoking, and limiting alcohol intake are essential.
Regular Monitoring: Regular check-ups with your healthcare provider to monitor blood pressure, and manage diabetes are crucial.
Medical Procedures: In some cases, surgical procedures like carotid endarterectomy or stenting may be recommended to remove blockages in the arteries.
Treatment and Rehabilitation
After a recurrent stroke, timely and appropriate treatment is vital. Treatment options include:
Acute Treatment: Immediate treatments to restore blood flow to the brain, such as clot-dissolving medications or mechanical thrombectomy.
Rehabilitation: Physical therapy, occupational therapy, and speech therapy are often required to regain lost functions and improve quality of life.
Psychological Support: Stroke recovery can be mentally and emotionally challenging. Support from psychologists and support groups can be beneficial.
Conclusion
Recurrent strokes pose a significant health risk, but with the right knowledge and preventive measures, the likelihood of a second stroke can be greatly reduced. Understanding the causes, recognizing the symptoms, and adhering to preventive strategies and treatments are key to managing stroke risk. Stay proactive about your health, and consult with healthcare professionals regularly to ensure you’re taking all the necessary steps to protect yourself.
FAQs
What increases the risk of a recurrent stroke? High blood pressure, previous stroke or TIA, diabetes, smoking, and heart conditions like atrial fibrillation.
How can I prevent a recurrent stroke? Taking prescribed medications, making lifestyle changes (healthy diet, exercise, quitting smoking), and regular medical check-ups.
What are the symptoms of a recurrent stroke? Symptoms include sudden numbness or weakness, confusion, trouble speaking, vision problems, dizziness, and severe headache.
Can lifestyle changes reduce the risk of recurrent strokes? Yes, adopting a healthy lifestyle can significantly reduce the risk. This includes a balanced diet, regular exercise, quitting smoking, and managing stress.
What treatments are available for recurrent strokes? Acute treatments like clot-dissolving medications, mechanical thrombectomy, and long-term rehabilitation through physical, occupational, and speech therapy.
By understanding and addressing the risk factors and symptoms of recurrent strokes, you can take proactive steps to safeguard your health and well-being.
Recovery After Stroke Podcast Interview With Maria Sclafani
Misdiagnosed at first, Maria Sclafani shares her stroke recovery journey, emphasizing self-advocacy, rehabilitation challenges, and mental resilience.
Instagram
Highlights:
01:59 Introduction
03:35 Possible stroke symptoms and diagnosis
13:02 Stroke history and symptoms
17:03 Recovering from stroke and managing fatigue
25:22 Stroke recovery and job security
32:10 Dealing with stroke long-term deficits
38:28 Executive function challenges after stroke
43:22 Work performance after stroke, and eventual resignation
49:37 Experiences with fatigue and its impact on daily life
59:15 Stroke recovery and medical care
1:03:12 Challenges in accessing neuropsychological evaluations
1:15:04 Learning patience and adapting after a stroke
Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au Hello everyone. Before we dive into today’s episode, I wanted to share something special. In episode 305 I interviewed Catherine Randabel, the inventor of HeadBed, a product revolutionizing hair salons, especially for stroke survivors. HeadBed provides excellent neck and head support during hair washes in hairdressing salons, reducing strain and promoting better blood flow.
Bill Gasiamis 0:33
For stroke survivors. This means lowering the risk of arterial damage and raising concerns about another stroke. It ensures a safe and enjoyable salon experience. Now I’m thrilled to support a product that aligns with my mission of stroke prevention and safety. In our interview, Catherine explained how HeadBed’s ergonomic design prevents neck hyperextension a common issue increasing the risk of stroke.
Bill Gasiamis 1:02
With HeadBed you can feel confident and comfortable at the salon knowing your health is prioritized. If you’re a stroke survivor, or you know someone who is the HeadBed is a must-have for your next salon visit, check out episode 305 For my full interview with Catherine and learn about how this product can make a difference. Now for those in the United States, visit headbedusa.com to get yours today and enjoy peace of mind at the salon.
Bill Gasiamis 1:34
Now I’d also like to mention my book The Unexpected Way That a Stroke Became the Best Thing that Happened. 10 tools for recovery and personal transformation. It features inspiring stories from 10 stroke survivors and offers hope for those on the road to recovery. For more information, visit recoveryafterstroke.com/book or search for my name Bill Gasiamis on Amazon.
Introduction – Maria Sclafani

Bill Gasiamis 1:59
This is episode 312. And my guest today is Maria Sclafani, who experienced a stroke that was initially misdiagnosed as carpal tunnel syndrome. This insightful episode Maria shares her remarkable journey of advocating for problem medical attention, the challenges she faced during her rehabilitation, the impact on her work performance and mental health and how she managed fatigue while returning to work part time.
Bill Gasiamis 2:29
We also discussed the unexpected support she found in her community and the importance of empathy and understanding towards stroke survivors. Maria’s story is a powerful reminder of resilience and determination needed to navigate life after a stroke. Maria Sclafani, welcome to the podcast.
Maria Sclafani 2:50
Thank you.
Bill Gasiamis 2:52
Thank you so much for being here. Tell me a little bit about what happened to you.
Maria Sclafani 2:56
Yeah, so I worked as a faculty librarian. We call them liaison or subject librarians here. So I was working in Kansas at Wichita State University. And it was in September 2022. and it was kind of the end of September, I think it was actually September 22 because I started September 14, the week before, so I was in my office.
Possible Recurrent stroke symptoms and diagnosis
Maria Sclafani 3:35
So I was by myself and I just had numbness in my right my left arm. And it would like, happen for a few seconds, and then go away, and then it would happen again. Go away, I would have been like quite a few times. And I was kind of like, trying to figure out what it was because it was strange, and it never happened to me before.
Maria Sclafani 3:57
Um, so I kind of like I think logically, I couldn’t really accept that it was a stroke because I was at the time 36 And I was in pretty good health and I didn’t have any, like factors or conditions or anything that would lead to the type of strokes that I had. Um, so I decided maybe it was carpal tunnel, because that can cause numbness in the in the arm. Um, so I called my doctor’s office. And they couldn’t get me until the following Monday.
Maria Sclafani 4:36
And I described the symptoms, but I said, you know, I think it’s carpal tunnel. So, I like when about the rest of my day. Like I went and had coffee with my friends. I drove home like I made myself dinner, you know, like, did whatever I normally do. And then I’m that week on Friday. Friday, I had tears a terrible headache. And I actually left work early to go home, because the headache was so bad.
Maria Sclafani 5:08
And I was kind of like, you know, my job entailed teaching and working at the reference desk and helping people. So it was very, like, I guess I would say like, very much, you had to physically be there and be able to function and I was struggling with that a little bit.
Maria Sclafani 5:27
So I was like, kind of scrambling to get my colleagues to cover my shifts at the reference desk, and to like, cover my classes for me, because I didn’t really know what was going on. And so Friday, I went home early, with this terrible headache. And I went to bed probably like 4pm or something.
Maria Sclafani 5:49
And I slept for like 14 hours. And I did call my doctor’s office on Friday, and I think they prescribed me over the phone. A like a steroid. So, you know, I eventually got the steroid and took it the next day or whatever. And then the weekend was kind of strange. Um, even now, it’s sort of like it looking back, like, it doesn’t really make sense.
Maria Sclafani 6:20
But it’s understandable for someone who had like trauma to the brain and was, you know, trying to function I was just trying to do stuff like I normally do. So I was trying to do my laundry and cook and like, I do meal prepping on Sundays. And I couldn’t, like I messed up the recipe, and I couldn’t figure out what I did wrong. And I was really confused about it and kind of like, frustrated and, like irritable.
Maria Sclafani 6:49
And so then, um, went to a doctor on Monday, she examined me, and she diagnosed me as having a pinched nerve in my neck. Yeah, and she did the stroke protocol. So she like felt my arms and legs. But I wasn’t like having a stroke at that moment. You know what I mean? So I don’t know how helpful that was. But, so she referred me to get an MRI of my neck. But I couldn’t get in to get the MRI until Sunday.
Maria Sclafani 7:27
And this was Monday. So I was like, Okay, I’m really struggling to do my job, though. Like, you know, what, can you do anything for me in the meantime, like, I don’t really understand what’s going on here. Um, and she kind of said, if you want some family medical leave paperwork to be filled out, we can do that for you. But like I and I laughed, I was driving around, like, I drove to work, worked a full day, like drove home, like, whatever.
Maria Sclafani 7:57
And I don’t think it was until Thursday that week, that, um, I went home early, like at lunchtime, I got a ride into work with my co-worker, because he lived in my building. And I normally drive like a stick-shift car. And I was kind of like, I don’t, I don’t feel like I can figure that out. So I’ll just get a ride with my coworker.
Maria Sclafani 8:21
So he gave me a ride into work. And then I felt sick, and had this terrible headache again, and asked my another co worker to give me a ride home during lunch. And so then I was in my apartment, and I had a neighbor that I was very good friends with and she kind of came down. She’s in her 60s. And we were just chatting. Um, she was kind of keeping me company because my coworker that drove me home couldn’t stay because it was her lunch break.
Maria Sclafani 8:48
So she had to go back to work. Um, so my neighbor Jesse said, you know, Maria, is it possible you had a stroke? It like, it sounds like a stroke, you know, like, Yeah, have you thought about that? And I was like, I don’t know. And so we kind of had this back and forth where she was like, Well, I think you should go to the hospital. And I was like, I don’t think I need to do that. It’s just a pinched nerve.
Maria Sclafani 9:13
And so then she finally got my, she called my doctor’s office and talk to my doctor, like through the emergency line. Um, and like, actually was able to speak to my doctor and was like, you know, I’m looking at Maria, she’s got drooping on the left side of her face. She’s, and I was having aphasia at that point. Um, so I was mixing up my words.
Maria Sclafani 9:38
And I was slurring my words, also, because I had the droop on the left side of my face. And so the doctor just said, you know, take her to the emergency room. Um, so, I call my parents and I was like, very upset. I was also crying a lot during this period, because this was like, basically it lasted eight days from like, A Wednesday to a Thursday, if
Intro 10:02
you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 10:26
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.
Intro 10:45
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recovery after stroke.com and download the guide. It’s free.
Maria Sclafani 11:04
So I was like very, like emotional. So I call my parents. And they were at the airport. And they were gonna get on a plane to go to upstate New York for a wedding. So I said, I don’t know what’s wrong with me. I can’t do anything. So my dad said, If you can’t do anything, go to the emergency room.
Maria Sclafani 11:25
And they had to then like get their bags, they just check their bags, and they had to get them back and then get waitlisted for flights to Wichita to come out and see me because they live in Colorado. So I finally made it to the emergency room. My neighbor Jesse drove me. And when I moved to the emergency room, you know, waited around for a bit and then they did when they did the MRI.
Maria Sclafani 11:52
They were like, yeah, so you’ve had multiple strokes. Um, there’s multiple, I think they call them infarct like, like little, you know, spots on your brain. And there’s one that seems a lot older than the rest. But it looks like you’ve been having them for about eight days, if you’re saying that the symptoms started on Wednesday.
Maria Sclafani 12:14
So they determined that they were ischemic strokes. And then when my parents came, my mom told them that her family has a history of Leiden factor five, which is a blood clotting disorder. So I mean, I think that they were like, oh, like we figured it out. So they tested me for it, but I don’t have it. And my mom doesn’t have it, just her two brothers have it. So they rolled that out. And then I ended up because I was at one hospital.
Recurrent stroke history and symptoms
Maria Sclafani 12:47
But they actually transferred me like from the emergency room to another hospital that had a stroke center. And so I think I got better care there than I did you know, in the emergency room. So yeah, it was it was better. So I was there for three more days. Um, they did a lot more scans and tests, they test my like, they scan my legs to see if I had any blood clots in my legs.
Maria Sclafani 13:14
They did something called the T E, where they went, they stuck something down my throat a camera, and then they looked at the top of my heart to see if there were any holes, which there were not. So they ruled out like they could rule out that but then they also gave me an implant, a heart loop monitor that’s just in my chest kind of under the skin.
Maria Sclafani 13:40
And it’s like about this big maybe it’s a piece of metal and it just tracks my heart rhythm to check for atrial fibrillation. So it syncs to like a cell phone, and it alerts the clinic if I have any atrial fibrillation, but I’ve had enough for two years, and I haven’t had any. So that doesn’t seem like a factor. Um, so yeah, then I I just had to, like recover. You know,
Bill Gasiamis 14:12
tell me about let’s go back to the very beginning, the first self diagnosis that you made. Did you have any understanding of what stroke was experience of anyone having had a stroke beforehand? Where that kind of made you rule it out? Or do we just guessing and thought that it was baby carpal tunnel, and did you know anyone with carpal tunnel?
Maria Sclafani 14:41
Well, so the interesting thing about the stroke history is that when I was in college, my it was my sophomore year of college. I lived in a dormitory that was like a house. It was like a very large house. It had been like a school for girls or whatever. So, um, there was a girl, there was a woman in my dorm who was about to graduate, she was a senior. And she lived on my floor. And she actually had a stroke, the week of graduation.
Maria Sclafani 15:16
So, um, it was a brainstem stroke, caused by a blood clot. And she actually was on the floor of her room. She collapsed. And she was making automated, like, sort of strange sounds like I think sounds that the body was admitting that I think when she wasn’t actively speaking, it was just something that was happening biologically. So we, we were all we all spent like a few hours trying to figure out what’s going on.
Maria Sclafani 15:48
We tried to get into her room, we couldn’t get into a room. And later, we found out that that was because she was in front of the door. But we didn’t know that. And then we like, called her room and she didn’t pick up and then there was a balcony on the roof that we were not supposed to, to. But we did, of course. So we went out on the balcony, walked across the balcony and looked in her windows, but her curtains were pulled down.
Maria Sclafani 16:15
So we ended up calling campus, I think they were called campus safety, but like whatever campus police, and she had to break into the room through the balcony through the window, she had to use like a knife to cut through the screen and climb in through the window. And that’s when she found Maggie. And then like the ambulance showed up. And it was like a whole mess because I guess the ambulance people locked their keys in the ambulance.
Recovering from stroke and managing fatigue
Maria Sclafani 16:43
So it was a long time. Before they were able to actually get her in the ambulance. This was in Massachusetts, it was in Western Massachusetts. It was a long time before they could get her like to the actual like emergency like the hospital. So then they also didn’t know what’s going on because she was young. She was you know, 2122. And she was also they kept asking us like after she was found there were for like four of us maybe.
Maria Sclafani 17:14
And they so they were interviewing all of us and asking like does she do does she drink? Does she use drugs, you know, illegal substances, any of that. And we were like, No, she doesn’t even drink. She’s sober. And she’s really healthy. She used to be on the crew team. And like, she wants to be a vet.
Maria Sclafani 17:33
And like she’s planning on going to that school after this. So like, she’s not like, you know, experimenting with like drugs or anything like that, you know, we’re pretty sure that that’s not the case. And I you know, I only knew her for one or two years. No, one year, I only knew her for one year, my sophomore year
Bill Gasiamis 17:54
that she had a stroke. And that was your first understanding what stroke looked like you compared yourself to that situation. And you thought that you don’t fit that situation? Yeah, because
Maria Sclafani 18:07
it was sort of it was very scary for all of us at the time, because we like couldn’t comprehend like that these things just happen to people like regardless of whether they’re good or bad, or they do good things or they do bad things like or they do drugs, or they don’t do drugs, like medical things just happen to people.
Maria Sclafani 18:27
And so I feel like we were all like, but she doesn’t drink or she doesn’t even drink and she doesn’t do drugs. And you know, she’s so healthy. And she’s got a whole plan for her life like after this. You know, this is not good. It’s not good timing. She’s about to graduate from college.
Maria Sclafani 18:43
And so what they additionally eventually figure out that it was, you know, a brainstem stroke. They were trying to figure out if there had been any indicators beforehand. And the only one was that she had had soreness in her jaw. She’d been complaining about that. And that was it. I mean, she then she collapsed on the floor of her dorm room.
Bill Gasiamis 19:05
Yeah. So your, your stroke your whole situation. After eight days of trying to work it out, you end up in hospital, how do they treat it? What’s the path forward after those first eight days.
Maria Sclafani 19:21
So I was referred to a neurologist. And I was referred for physical therapy, occupational therapy and speech therapy. And I actually was able to go to a rehab clinic in Wichita, where all of the physical therapy all of the therapies were together in one place. So it was residential, like partially residential.
Maria Sclafani 19:45
So some people lived there, but like I was able to go to one place and then my speech therapist, my physical therapist, and my occupational therapist could all like, communicate with each other and they all like shared information about me and like could come up with A game plan.
Maria Sclafani 20:01
So I did, I did that after, unfortunately, my mom chose to stay with me in my apartment in Wichita to help me, um, because we weren’t really sure if I could legally drive. And we didn’t really get clear answers from anyone. They told us to ask the occupational therapist, an occupational therapist said, I don’t know, you have a driver’s license.
Maria Sclafani 20:27
So I don’t know, like, so I had those therapies. For a few months, I had to go on family medical leave from the university, um, for like, a life threatening, you know, thing. And so I went down to working part time. Um, so four hours a day.
Bill Gasiamis 20:58
What was that, like, going and working part time? And how did you get through it? Um,
Maria Sclafani 21:04
well, it was. So the thing about this is, you know, my parents were there, of course, and they were helping me that according to them, they were trying to get me to relax, and just like, deal with the fact that I have had multiple strokes. And you know, they’re cryptogenic. At that point, they didn’t know what the cause was. And I just had rehab.
Maria Sclafani 21:29
And I had a good reason not to go back to work for a while. But I wouldn’t do that I kept trying to get into my email, and then I would get the password wrong. And I would like lock myself out of the email. Because I had issues with typing and spelling, I’m, so then I would go to zoom meetings.
Maria Sclafani 21:53
And I would say, like, 50% of the time, I could follow along, but it was, it was pretty tricky. I didn’t like speak, I didn’t communicate or like contribute anything, but I just wanted to kind of be in the loop. Because it was October by this point. So it was a busy time in the semester.
Maria Sclafani 22:10
So I was like, kind of trying to juggle everything. Um, I mean, it took like a whole like two hours, to just figure out how to like, set up my out of office message on my email. My dad had to, like, help me and we had to figure out like, how to do it. So that faculty who were emailing me for help with stuff like found, you know, knew that I was on leave and not available and knew who to contact. But I was very insistent, on going back to work.
Bill Gasiamis 22:45
I remember my own condition being in that situation where you’re trying to type an email after, for me it was after the second major bleed, and then having to write an email for work and sitting in front of my computer and struggling probably for what was hours, hours and hours just to write a few lines.
Bill Gasiamis 23:06
And then not being aware of the time that it had taken me that that I had spent sitting there trying to write this email, and then I was getting nowhere. It was pretty intense to
Maria Sclafani 23:21
pretty much like, I was sort of like that, that time feels fuzzy in my memory. You know what I mean? Like, it’s not clear, it was all sort of like. So I think the benefit of working part time was that I just worked like a morning, like nine to one or something like that.
Maria Sclafani 23:47
And then I usually had, like therapies, I had multiple medical appointments. So then I had like, the whole, I could do those in the morning and go to work in the afternoon, or I could go to those in the morning and you know, whatever. I can sort of work it out either way. And sometimes I would like go into work for two hours and then leave and then come back and like do the other two hours.
Bill Gasiamis 24:14
Was fatigue an issue?
Maria Sclafani 24:16
Yeah. And the neurologist didn’t tell me about that. No one at the hospital told me about the fatigue. It was actually my physical therapist that said, Have you been taking naps? And I was like, why? And she was like, it’s important to take naps, you know, recovering from strokes.
Maria Sclafani 24:39
You’re gonna have a lot of fatigue. And I was just like, I think my mom was with me, and we were both just sort of like, Oh, we didn’t know that. And I had been trying to power through the day. Because in my mind, it was like, Well, I don’t want to take a nap that will disrupt my sleep cycle.
Maria Sclafani 24:57
I want to like you know make it through the day and go to bed early. But then I started taking the naps and working like a half day sort of allowed for that type of thing. I could take a nap at, like 3pm or something. And that really helped. But I was I’m surprised that it was a physical therapist who asked.
Recurrent stroke recovery and job security
Bill Gasiamis 25:22
Yeah, that was a lot of people don’t know to tell you about that kind of stuff. I don’t know why, but it’s not in the doctor’s part of the process to tell you about when you go home, these are the things you’re going to experience, I really don’t think they know what stroke survivors experience.
Bill Gasiamis 25:40
And it’s usually the rehabilitation people who know that because they try and rehabilitate you, and they see what you can and can’t do. And they see how quickly you might get wiped out after a physical exercise or some exertion in some way. So they see it, and then they have to deal with it.
Bill Gasiamis 25:57
And then they’ve got to kind of set you up to succeed. So helping you succeed. One way to do that, to help you succeed is to encourage you to sleep more during the day, it’s just to have those Nana naps, we call them here in Australia, or catnips. Yeah,
Maria Sclafani 26:14
yeah, um, those really helped with my recovery, and I would say I did those for a few months, because I went back to work. I’m gonna say, mid October, so like, probably four weeks after I had my strokes, full time.
Bill Gasiamis 26:38
Part time, part time again. Yeah. Yeah. I
Maria Sclafani 26:41
was very anxious to go back to work. But I also couldn’t really, you know, so my work agreed to let me work part time.
Bill Gasiamis 26:52
And you were 36 years old at the time? Yeah. And what was normal life? Like before the stroke? What did your day consist of? Were you in a relationship? Do you have a family? How did you go about life?
Maria Sclafani 27:13
Yeah, well, um, so I lived in Wichita for five years, I moved there in 2019. And I became a librarian a little later. So I was an adjunct professor of Writing and Rhetoric for five years at CU Boulder. And there’s no job security when you’re an adjunct at all. I mean, they literally don’t care if you, if you don’t come back the next semester, they actively were telling us at some point, like to take other jobs if we were offered them.
Maria Sclafani 27:48
So I was like, this is not, this is like a dead end, this isn’t going anywhere. For me, there’s no job security here. You know, I don’t have any, I didn’t have health insurance, which is why I stayed at that job. Um, you had to be all you had to teach two classes to qualify for health insurance.
Maria Sclafani 28:06
And a lot of universities in Colorado, it’s that you have to be teaching a full course load. So for classes to qualify for health insurance, so it was a big incentive for me, because it was also like university health insurance, it was good health insurance. Um, so I did that for five years. And then I was trying to think about what else I could do that would offer me more security. And so I figured out that I could go for two years, get a library science degree.
Maria Sclafani 28:36
And then I could work as an academic librarian, and I could do what I was basically already doing, which is teach students how to do research. So my department at CU worked really closely with the library. So a lot of principles of library instruction were built into the curriculum of the classes that I was teaching.
Maria Sclafani 28:56
So I was already familiar with them. So it was like a very easy transition. So I did that for two years 2017 to 2019. And then I, you know, graduated and I had a lot of job interviews, and I went to a lot of places and considered a lot of jobs. But then I eventually accepted the offer from Wichita State, and I went there in 2019.
Maria Sclafani 29:22
So I would say, you know, it was a little rough, in 2019, like 2019 to 2020 because that was leading into the pandemic, so I didn’t really have any friends other than my co workers who were all very nice people and they still are very nice people. You know, but I didn’t really like know anyone.
Maria Sclafani 29:44
I befriended my neighbor, Jesse, who ended up taking me to the hospital. And I was kind of like, just starting to like, join book clubs and like, go out a little more and explore when We shut the whole university shutdown March 2020.
Bill Gasiamis 30:06
Yeah, so how did you guys go about, we still employed in those times where you shut where the your workplace was shut down, we still able to be employed.
Maria Sclafani 30:18
So it was, it was pretty unusual in the state of Kansas at a university. For us, we stayed employed, and they didn’t. A lot of universities, I forget what they call it, but it’s like, they dock like 10% of your pay or something. Like you don’t work for a week, and then they can like not pay you for that week. So it works out for them.
Maria Sclafani 30:44
And a lot of people salaries are getting cut. So our salaries stayed the same. And I’m the administrators at the university, like the dean of the library, that administrators all agreed to just take two weeks off in the summer, so that they could save the university money, and that kind of balance things out.
Maria Sclafani 31:04
So we were working remotely, from March until May, the library was closed, like, not open to the public. You know, like, we were just fully remote, and then in May 2020, they insisted that we open.
Bill Gasiamis 31:24
Okay, so in May 2020, you’re back at work, that we
Maria Sclafani 31:29
actually continue to work remotely. So as a faculty librarian, I was able to, I’m able to do my job, I was able to do my job, like from home, like I could do emails from home, I could do instruction from home, like via zoom. And I could, we could do chat reference, which is basically you know, how we provided reference services during the pandemic was just virtual reference.
Maria Sclafani 31:55
And we could, we could do that from home too. So we kind of took these like four hour shifts, where like, you’d be on reference from like, nine to one, and then someone else would be a reference from one to five. So that was a big chunk of time, and you were just home.
Dealing with stroke long-term deficits
Maria Sclafani 32:10
So like, it was, it was fine. Um, so there were people that had to come into the library and work staff who had to physically be there. But we didn’t. And I don’t think we really went back until 2021 is when we were starting to go back in person.
Bill Gasiamis 32:34
Okay, so that didn’t really interfere with your stroke recovery or accessing services when you did have the stroke in 2022. What month was that? September, September. So it was everything kind of back to normal, work-wise. And pandemic wise.
Maria Sclafani 32:53
It was, but you know, it’s interesting, because, um, I was wearing a mask at work. So people couldn’t see that I had the left cheek was drooped. And we were having our meetings on Zoom, still are like department meetings, I guess we would have them like once every other week or whatever.
Maria Sclafani 33:14
And we were still doing those remotely. So like, people weren’t physically seeing my face in person, you know, it was still, like, removed a little bit. Um, so because we and I, we were all kind of wearing masks and being careful. That was 2022. I mean, because it just continued. It continued. So I mean, we just had to keep wearing masks, because the university insisted that we should open. Was
Bill Gasiamis 33:44
that an issue? Because then your colleagues didn’t quite understand what you were going through. And it was difficult for you to navigate that.
Maria Sclafani 33:52
Yeah. And, you know, it was interesting, because when I was in my apartment, and I was just like, with my neighbor, like, I didn’t wear a mask, because it was just the two of us. We weren’t like in a public, you know, in a library that was open to the public, where there were like, hundreds of people every day.
Maria Sclafani 34:09
So like, that was when she that’s when someone actually noticed when I wasn’t wearing a mask. And when I was with someone, and I was like, you know, sort of close. Um, my coworkers kind of knew something was going on, because I was like, you know, bursting into tears in a Zoom meeting and saying, I can’t do I don’t know what’s going on with me, but I need your help. I can’t do my job and all this stuff.
Maria Sclafani 34:32
So they knew something was up, but I told them what the doctor told me. I said, you know, Doctor says, I have a pinched nerve in my neck. So I guess this is what, this is what that looks like. So I think that they were concerned, certainly, but they didn’t. They were like, well, she’s young. You know, how bad can it be?
Bill Gasiamis 34:58
Yeah, How do you find people react to you? When you say you’ve had a stroke? Or a multiple strokes? How do they respond? People that don’t associate? Younger people with strokes? How do they deal with that?
Maria Sclafani 35:18
Usually, they’re surprised. They say, You’re so young, or they say you don’t. I didn’t, I didn’t have I would say I had some drop foot on my left foot afterwards. And the occupational therapy and physical therapy was helpful for that. And I had like weakness in my in my left arm. Um, but like, other than that, I don’t have any physical I guess, indicators or physical, whatever you would call them.
Bill Gasiamis 35:52
Deficits After Effects. Yeah. deficits, and therefore you don’t look like somebody who’s had a stroke, as well as a you’re too young, but you don’t look like you’ve had a stroke. And people just can’t connect the two.
Maria Sclafani 36:07
Yeah, so I would say there’s a lot of surprise. Usually elderly people, they have had strokes, or they know someone who’s had a stroke. And so they understand a little bit more. But I would say people that are young, under 50. They tend to be very surprised, and there was a woman I actually met, and I was having conversation with her in a bookstore.
Maria Sclafani 36:33
So it was just an informal conversation about books. Um, and because she came in looking for one book, and then habit and I told her, You know what, you should really get this other book by the same author, you know, so we started talking, and I said, you’ll probably be surprised by this.
Maria Sclafani 36:49
But I actually had multiple strokes. And that’s why I’ve moved back to Colorado to be near my family. And she said, I actually wouldn’t be surprised, because she said that when she was in college, one of her close friends had a stroke. And he was a runner. So it was completely out of the ordinary, and he was very healthy. And then he like collapsed one day.
Bill Gasiamis 37:13
Yeah, so it is common, but rare for younger people to have a stroke. And other people who are, have been luckily enough to escape stroke. And they’re as old as you were, or even older, might be surprised by that, especially if you don’t look like you’ve had a stroke stroke. Looks like people can’t walk properly.
Bill Gasiamis 37:36
It looks like there’s a problem with somebody’s arm. It looks like there’s a problem with the way their speech or their speak or the way that their mouth looks. And it looks like you’re recovered quite well. Do you have any ongoing long term deficits that you’re still overcoming or you’re working to overcome?
Maria Sclafani 37:56
Yeah, so I did actually leave my position at the University at the end of January. So technically, like, February 2, or something, but like, end of January, beginning of February, I left my position. Because I, I was going through a major depressive episode, which is probably like linked to brain damage from the strokes.
Executive function challenges after stroke
Maria Sclafani 38:20
But they were just throwing all sorts of meds at me and we couldn’t get good mental health care in Wichita in Kansas at all. It’s just was terrible there. Um, so I decided to move back to Colorado, like, you know, without a job to move back to Colorado, just to be near my family. And I’m living with my parents right now. Um, and what was your question? Yeah, I think I answered your question.
Bill Gasiamis 38:48
I’m still deficits. Yeah,
Maria Sclafani 38:51
so executive functioning. So that was very damaged in the strokes. And I did go to see a neuro psychologist, and I actually went to see her.
Maria Sclafani 39:03
I requested that I’d be referred to a neuropsychologist after I listened to your podcast, because you interviewed someone who I want to say was from New Zealand, and it was a woman and she said that when she went to see her PCP, and there was like a history of stroke in her family, or it just it seemed likely that she’d had strokes or a stroke.
Maria Sclafani 39:26
She said, But I’m talking funny and her Her doctor said, but don’t all Kiwis talk funny. I think I remember. He felt bad about that and apologized to her and stuff. And I was like, that’s very similar to what happened to me because I asked my doctor, if it was possible that I had meningitis because of the terrible headache, and that’s just all you hear about meningitis.
Maria Sclafani 39:55
I mean, it’s mostly with college students, but like, you just hear that they have a terrible headache. And then they go to bed and they don’t wake up. So I was very, I think, understandably paranoid considering what had actually happened. But I was very paranoid. And I asked her if I had meningitis if it was possible. And she basically said, No, you would be like, a lot sicker than you are. If you had meningitis.
Bill Gasiamis 40:19
Yeah, it’s a little bit more debilitating, because I think it affects the whole brain because the infection makes the brain swell, and then causes real major challenges really quickly.
Bill Gasiamis 40:32
So with executive function, according to Google search, the phrase executive function refers to a set of skills, these skills underlie the capacity to plan ahead and make goals, display self control, follow multiple step directions, even when interrupted and stay focused, despite distractions, amongst others. So does that description describe the things that you’re challenging that you’re finding challenging to deal with?
Maria Sclafani 41:08
Yeah, so I think my job required a lot of executive functioning. My title was actually the coordinator of library instructional services, which is a long title. And so I had to coordinate a lot of things. I coordinated a workshop series, I coordinated instruction for a first year writing class, the librarians would teach one library session for all of the sections of that class.
Maria Sclafani 41:35
And I was responsible for creating the lesson plan and doing an assessment of the students and all of that stuff. So I was really struggling when I went back full time, in this last fall, so fall 2023. So I went to the neuropsychologist, she said, You’re clear to go back to work, she did cognitive assessments of me.
Maria Sclafani 42:00
And she said that my limits were in my executive functioning. But she felt that as long as my job didn’t require me to be able to respond to things quickly, her example was like an air traffic control person. Like she was like, if your job was doing like air traffic control, you wouldn’t be able to go back to work. But your job does not require that kind of like, you know, split second thinking, so I think you should be fine.
Maria Sclafani 42:29
And, you know, I think I was just in the fall in like, September, November, October, I guess, um, I was like struggling with things that I didn’t struggle with before my strokes. And I honestly think that I was in denial for quite a while after I had the stroke. So like, I knew I’d had them. But like, I was very determined to not let them affect my life.
Maria Sclafani 42:57
Like, I wanted to go back to how things were before. And my speech therapist and I actually stayed in speech therapy for a long time, I think I was in speech therapy for six months, from like, November, October until April. And she sort of tried to broach this topic with me of like, well, you know, you’re telling me about your job.
Work performance after stroke, and eventual resignation

Maria Sclafani 43:22
And it sounds very demanding. And I don’t know, if it’s something that you can continue to do with the limitations that you have, you have limitations with attention, focus, you know, like, remember memory, like all of these things that, you know, we’re working on, it seems like that would affect your ability to do this job that you have. And I think I just found that that was in fact true. I mean, she was right.
Bill Gasiamis 43:53
But was that evidence, evidence that it was true? For example, were your colleagues commenting on your ability to carry out your work tasks? Was anyone saying she’s not pulling her weight? Anyone giving you any feedback whatsoever?
Maria Sclafani 44:10
No, I think and I don’t know. Um, so what I do know is that I was dropping the ball on a lot of things. So I would write myself a to do list. And I would write, like, you know, email, so and so or, like, download these sheets, these responses and email them to faculty. And then like, a week later, I would look at that, and I’d be like, Oh, I didn’t do that.
Maria Sclafani 44:34
I’ll do it later. And then a week later, it was just the same thing over and over and over again. And you know, then it’s like November, and I actually took FMLA leave to take to stay at home because I was not functioning. And I was like, it’s how was it November and I haven’t done this thing that I was supposed to do in September, like, what happened and so yeah, it was sort of like See, the signs were there.
Maria Sclafani 45:02
But, um, I think that because I was a very reliable and responsible employee, um, everyone just assumed I was still fine. Because I came back to work. And I said, I was fine. And I, you know, I spoke to my supervisor, and I said, because I had to ask them, to allow me to work part time for the rest of that year 2022.
Maria Sclafani 45:27
So I actually worked part time from when I got back to work in October, until May. So the rest of the semester, and, you know, I said, I want to get this cognitive assessment done, you know, and make sure before, before I actually go back to full time, and he said, that was fine.
Maria Sclafani 45:46
So I did that. And then, you know, when we spoke later, he said, you know, Maria, you’re not one of those employees that, like, people are continually saying that you’re never here.
Maria Sclafani 45:59
You know, that is a, that can be a problem with some librarians and I have had, you know, co-workers and colleagues and stuff that that has been an issue with them, or they’re just never in their office, and faculty come looking for them, and you don’t know where they are, and all of that stuff.
Maria Sclafani 46:16
And because I was, I was still coming every day. Even though I went back to working part-time. In December, I think I went back in December, and I went back to work working part time, like, I was still coming every day and like, emailing my supervisor and keeping him updated about things. I
Bill Gasiamis 46:35
think, notice your absence, and therefore, they didn’t really clue on to the fact that you were not at your best performance. Performing the best, you probably knew that more than they did, you may have had comparison of your previous capability, and then your newest capability, and you’re going in with something not right there. Yeah,
Maria Sclafani 47:01
and I think I thought that, if I like worked hard enough, I could fix it. Like, I could get back to the way it was before. So there was there was a lot of denial happening. Um, and it was actually, you know, me, I didn’t get fired.
Maria Sclafani 47:20
You know, it was me that chose to leave my job and resign, um, you know, and I was very, like, conflicted about that at the time, but I was like, Okay, I can’t continue to do this job anymore. This was in early 2024. So like, January, I was like, I can’t I’m not doing my job right now.
Maria Sclafani 47:43
You know, and my coworkers, they’re all have taken on some of my responsibilities, my duties, like, and we were working on changing my job description, so that, like, my duties would change so that my job was more manageable for me, which I appreciate very much. I think Wichita State was very, what’s the word I want? accommodated? Yes, thank you.
Maria Sclafani 48:08
Um, they were very accommodating, they worked really well with me on things. So that was all happening in January. And I was like, at this point, I’m not really even doing my job anymore. My coworkers are doing my job. So it’s not like, I’m doing it. And then if I leave, there’s someone to do it. They’re already doing it.
Maria Sclafani 48:29
So why am I here? You know, I don’t know. And I was, I was pretty rough. By the end, by the end of January, I was really not functioning. I was on mood stabiliser. Um, and, you know, subsequently after going off of it, things changed a lot for me. And the psychiatrist, doctor who prescribed that medication said, you know, I think maybe it wasn’t, wasn’t good for you. Like, yeah, maybe it wasn’t good for me.
Maria Sclafani 49:03
Um, because they, I think that they looked at these issues, I was having these impulsive decisions, and like, issues with coordinating my schedule and all of this stuff. And they were like, Oh, this is you know, she’s she’s not being consistent. There’s some kind of mental health issue here. So they were trying to treat that without really considering what the how much was caused by the stroke. You know what I mean? Strokes plural.
Experiences with fatigue and its impact on daily life
Bill Gasiamis 49:37
They underestimated the possibility that stroke was causing mental health issues, or was the kind of thing that needed to be resolved or to help support you in that space so that you could be better mentally. It’s not necessarily I woke up and I had mental health issues.
Bill Gasiamis 49:59
There was another cause, but sometimes people in those types of spaces don’t look at, they look at the symptoms, right, and they don’t look at the cause. And then they treat the symptoms, here’s a medication, and hopefully the symptom that you’re feeling, or the thoughts that you’re having, or the challenges that you’ve got will go away, if we give you this thing, and then it gives you a temporary reprieve from the symptoms, but it never has actually dealt with the root cause. Yeah,
Maria Sclafani 50:34
because I really felt I felt very flattened. Like, I didn’t feel like I had a lot of energy, or motivation, I couldn’t even like really be expressive with my face at some point. Like, I was just monotone. And like, because it felt like, and I would talk to people, and I could tell, you know, like, that they were expecting something different from me, and I couldn’t give it to them.
Maria Sclafani 51:01
And I was like, I don’t, it’s like, it’s like I’ve run out of like a bat have run out of battery, like I don’t have anything left to like, be animated, and like, you know, make eye contact with you and do all of these things that would indicate to you that I’m listening and that I’m, you know, paying attention and active.
Maria Sclafani 51:21
And so, you know, at that point, I was just totally depleted. And I would say I was barely speaking. I mean, I would answer questions when I was asked, but I’m a very talkative person. And I was like, barely speaking,
Bill Gasiamis 51:35
you described that really well, running out of battery, a lot of stroke survivors use that term, to describe what happens when they’re fatigued. And I’ve even seen an image, you know, some stroke survivors have typed an image with, you know, the battery indicator that shows, you know, five green bars, and then three of the green bars are missing, and there’s only two left.
Bill Gasiamis 51:59
And then it’s like, I don’t, I’m conserving the rest of the energy of that barrel to get through the rest of the day. And it’s only midday. So if you’re expecting me to talk or respond or laugh, or laugh, I’m probably not going to be and it’s nothing to do with you. It’s just got to do with how I feel. But people who don’t have been through what we’ve been through, don’t can’t grasp it that don’t get it. Yeah,
Maria Sclafani 52:26
and that made me like, not want to be at work. And I mean, working part time helped with that. But, um, the way things were at Wichita State was that they wanted us in the library, who were those of us who worked in library to still be in the library, five days a week, in person. Yeah, the extent that we could. And that is not the case at other academic libraries.
Bill Gasiamis 52:51
Uh huh. And you’re dealing with details that are pretty full on like people want to know, you want you to direct them to a piece of literature that is related to something that they are trying to get to the bottom of, or to research. And that requires a lot of brain energy, as well as that you’re doing that for multiple people that they wouldn’t be just for one person.
Bill Gasiamis 53:18
And then that would be you know, I remember what it was like just trying to write my book, or I remember the struggle of sitting there and trying to find data to come to support my statements, and how long and how difficult and how arduous that was. And I’d never gone to university or studied for a degree or anything like that.
Bill Gasiamis 53:48
So I didn’t understand the extent of the effort that you had to put in. But I went, it took and that’s what took me a good part of two years to do. Like it took me two years to get to the point where I was able to gather all the information on this book that I was writing, and it and I found that I did that.
Bill Gasiamis 54:13
If I wasn’t working constantly for two years, what I was doing was picking my moments so that if I had a good two weeks of energy, I would work as much as I could and get as much done in that two weeks because then I knew there was another three or four weeks coming up when nothing was gonna get done.
Maria Sclafani 54:32
Yeah, yeah. And you know, what was interesting for me after the strokes was you know, why went back to work part time. But my job was very much I remember speaking to a co worker at one time and I was like, it’s tough because like, I have, you know, permission I am allowed to be here half time, um, and we’re in the university figured out a way to get me paid For those other four hours that it wasn’t, because I was out of paid leave at that point.
Maria Sclafani 55:07
So there was a program for the state of Kansas that I could apply for, and I did. And they would allow me to work for four hours a day, and the other four would be covered. But like, I was like, okay, but like, this job, like, it doesn’t reduce the amount of work I have, you know, like working for us a day doesn’t change the fact that, like, I have other stuff I need to do.
Maria Sclafani 55:33
And I just not doing it, you know, so that was kind of hard, like, I was getting emails from faculty and requests to do instruction and all of this stuff. And I had to kind of like, figure out what to prioritize, like, what I had energy for. And I actually, I really appreciate my co workers at Wichita, because every time I ask them for help, they helped me. And so I actually team taught, like, you know, two of us teaching maybe three or four times in the spring semester.
Maria Sclafani 56:07
So that would have been 2023, in the spring, because I had these classes scheduled that had been scheduled in the fall. And I, you know, couldn’t, I didn’t feel confident enough teaching them on my own. Because teaching is very much like you can’t hide like, you’re there and the students see, and if you don’t know the answer to something they can tell. And so yeah, and so I had a co worker teach with me each time that I taught.
Maria Sclafani 56:42
And that really helped me feel like okay, this is manageable, and they would also kind of like, maybe step in or like answer questions, or, you know, kind of supplement add to, you know, stuff that I’d missed. And that was helpful. But, um, so in, technically, the field that I’m in is library, and information science. Um, and I don’t think a lot of people really know what that is. Especially not in America.
Maria Sclafani 57:14
I mean, when I tell people that I’m a librarian, the first response is like, Well, what do people even read books anymore? Like, do they even need libraries? And I have to be like, they they do they do read? And people need libraries, and they use libraries for things other than reading, you know?
Maria Sclafani 57:38
Yeah, so then people are surprised that there’s actually programs, there’s no library schools, that I, you know, I would sort of say, Oh, I went to library school as in, like, I went to a university and got a graduate degree in Library Information Science. And they’re always like, surprised by that. And I’m like, What did you even study? And it is about, so one field is information behavior. So that’s how people seek out information.
Maria Sclafani 58:08
And there’s lots of like, models, I have a whole textbook of models of how people seek out information, because it’s a very popular field. Um, and so part of that is information seeking. So like, you know, when someone comes into the library, they’re seeking information, you know, how do they how do they go about doing that? So one concept that actually is pretty popular is the concept of serendipity.
Maria Sclafani 58:34
So that’s like, when faculty usually do this, I would say, students don’t usually go into this to x to get books. It’s usually faculty or grad students, they’ll go to retrieve a book. And they want to have the call number, the Library of Congress call number, which is what we use in academic libraries.
Maria Sclafani 58:53
And they want that they want that specifically, they don’t want to put in a request and have that book pulled for them, which they can do. I did it all the time. You know, I had books pulled for me, but they want to go in and they want to look at all the books that are cataloged, you know, like shelved next to that book, because they’re going to be about the same topic.
Bill Gasiamis 59:15
So they have an idea for a book, because there’s perhaps a piece of literature that they’re familiar with by a particular author. And then they know that if I go to that particular author, to the left, and to the right of that author, there’s gonna be a whole bunch of other authors that talk about the same type of topic.
Maria Sclafani 59:37
Yeah, and so that’s called, oh, sorry. That’s just an alarm on my phone. Um, that is, um, that’s like the idea of serendipity. Like, it seems, at least to you when you’re going in and looking at these call numbers that you find books like, serendipitously, like just there is but it’s not, you know, it’s not really serendipity because it’s actually, like they’re, they’re placed next to each other for a reason.
Maria Sclafani 1:00:07
Because they, you know, belong in that certain section. So, I, as a librarian was like, very fascinated with how I, as a stroke survivor had to figure out how to find information about strokes.
Maria Sclafani 1:00:26
Like what to do. I mean, I, you know, I was lost, I think a lot of stroke survivors are lost, like you have your physical therapist or occupational therapists, whoever, you know, your rehab people are, but like, I mean, my neurologist was not very responsive. To put it, like, politely, he tried to cancel an appointment once, because he wanted to go on vacation.
Bill Gasiamis 1:00:54
Your neurologist wasn’t very responsive to your need for follow up for information. What was?
Maria Sclafani 1:01:04
Yeah, so in the appointments, if one was only last 15 or 20 minutes, and I would ask things like, Am I more likely to have another stroke seems like something I should be concerned about. And he would say, you’re more likely to have a stroke now than you were, before you had your first stroke.
Bill Gasiamis 1:01:28
To stick with somebody who’s had an ischemic stroke is very much more risk of another stroke after the first one. Neurologists tend not to do a lot of the kind of work that we hoped they would do a lot of shock survivors go back to neurologists for information, and they don’t get a lot of satisfaction.
Bill Gasiamis 1:01:48
And it’s not because the neurologists don’t have, I think they just go, we go to them for the wrong reasons. Usually neurologists work with a medical team, they can look at a scan, and they can say, this is what it looks like, has happened, you know, there’s some courses of action that you might want to take, but they’re really an intermediary between you and the doctors, and they don’t really do much with the patient, other than perhaps check in on you, and just see how things are going and understand that level of that level of kind of where you’re at.
Bill Gasiamis 1:02:26
But they don’t really get involved with much of the medical side of the process. And I suppose what they might be best doing sometimes is referring you along to other people who are more likely to help if they know who to refer to.
Maria Sclafani 1:02:44
Yeah, and he, um, I asked him, I also asked him how many strokes I’d had, because at the hospital, they just kept saying multiple. And he said that it didn’t matter how many strokes I’d had that, you know, my brain had just been damaged in some way. And it was gonna, like, you know, and I asked the question, like, you know, well, can I go back and do my job? You know, can I go back to work? And he was like, I don’t know.
Challenges in accessing neuropsychological evaluations
Bill Gasiamis 1:03:12
Yeah. He is, it’s for Neuro psych, to evaluate your ability, for example, if whether or not your executive function is up to the task or not. And that’s the thing, it’s like, when you’re a stroke survivor, you don’t know where to go and who to get information from.
Bill Gasiamis 1:03:29
So you ask the person that you came across the first time, which might have been a doctor, or a neurologist, and you hope that they can be a little more forth, coming with at least some kind of feedback other than them be blank and say, I don’t know. And even though that’s the truth, and maybe the answer should be, I don’t know.
Bill Gasiamis 1:03:55
And then, I don’t know, but I don’t know and maybe, and then just sort of give you guidance as to where to start the conversation with the next person who the next person might be. That’s the part that I struggle with. This so specialized, they have no idea who else can support a stroke survivor in their recovery. And even if they get it wrong, and they say you need to go and see a neuro Psych.
Bill Gasiamis 1:04:22
And perhaps it wasn’t a neuro psych that you needed to say, Well, who cares? It at least you’re you’re going through the process of getting the conversation started and you’re ticking off things, and then you’re narrowing down who it is that’s going to be more likely to be able to support you and help you overcome those challenges, whatever they are physical, for some people, cognitive bothers speech for others.
Bill Gasiamis 1:04:51
So they can it is a little bit disappointing. Some people do get disappointed with their neurologist but it’s because we act expect too much from them. And we don’t know where, where else to go. That’s the thing that I found I had
Maria Sclafani 1:05:08
to actually ask him to refer me to the neuro psychologist. Yeah. But you know, because of your podcast then. So I mean, I mean, I had to information seek, and I found your podcast because I listened to podcasts anyway. So I was like, okay, so if I listen to podcasts anyway, why don’t I search and see if there’s any stroke podcasts.
Maria Sclafani 1:05:30
And I found your podcast. And I think I discovered the American Stroke Association website, they have a warm line that you can call, so you call and you leave a message, and someone will call you back in a few days. I utilize that. But I, you know, I actually ended up buying hope after stroke, that book by the doctor that you interviewed, and I listened to that interview, and then I went out and I bought the book, and I told my mom that she had to buy it.
Maria Sclafani 1:06:06
So we have two copies now, but you know, because I was like, finally, you know, like actual something about what to do after a stroke. And so I was kind of like, just doing what like a librarian does. I like, found a podcast, I found a book, I found out about the neuro psychologist. And she asked me when I met with her, you know, she said, Well, how are you referred here? You know, why did your neurologist refer you?
Maria Sclafani 1:06:37
And I said, he didn’t actually I had to call and request that he referred me. And his nurse said she didn’t know what a neuropsychologist was. So yeah, and you know, there was a lack of neurologists in Wichita, which is apparently like a well known problem. You don’t find that out until after you need a neurologist.
Maria Sclafani 1:07:05
But there also was a lack of neural psychologists. So I just went to one. And she told me that she was the only one other than the one that worked at the VA, and he could only work with veterans. Wow. Wow was like the only option. And fortunately, she was very nice, you know, and very helpful.
Bill Gasiamis 1:07:23
And problem worldwide. Like in Australia, if you have an appointment to see neurologist, if it’s through the public system. Not a neurologist, a neuro psychologist, you could wait nine months to see a neuro Psych. It’s such a long time to wait when you’re in dire straits, and you’re not thinking properly and you don’t know how to help yourself.
Bill Gasiamis 1:07:48
And I remember waiting nine months for me to see a neuro psychologist after my counselor suggested I see neuro Psych. My, my psychologist, suggested that I say neuro psych because she realized in our conversations that there was things amiss, and that I wasn’t able to begin and finish sentences.
Bill Gasiamis 1:08:09
And what I didn’t know. Because we just weren’t thinking straight. What I didn’t know was that I could get a private appointment to say, a neuro Psych and pay $500 or more, or whatever it was, at the time. And speed up that process and get to see them sooner so that they could help me quicker. I didn’t know that you could do that.
Bill Gasiamis 1:08:37
But the test for a neuro psych evaluation is such a long process and the report writing later on is such a long process that what I realized recently to see a neuro Psych and to get a neuro psychological assessment done, it can be up to about $2,000. So it’s prohibitive from a cost perspective, especially when you’ve had a stroke and money’s an issue.
Bill Gasiamis 1:09:04
And then it’s also you need to know you need to get lucky and find the right piece of information to tell you that you should see a neuro Psych and then you need to learn what a neuro psych does and how they’re different from a psychologist and what their role is in supporting you.
Bill Gasiamis 1:09:21
And it’s such a jigsaw puzzle and such a you know, it’s such a task to just work out all those things, and I never had podcasts listened to. I didn’t have many books to read and write when I started going through this. So I had to really uncover it myself. One of our biggest tasks was research.
Bill Gasiamis 1:09:44
I think our biggest task in this recovery process was research and and then hitting brick walls when you took that research to your doctor and then they didn’t know what the hell you’re talking about because Nobody had ever gone to them with a bit of information about stroke, and they were just a general practitioner, and they hoped you would just go to the next person and the next person would help you and no better off not having you in their practice. That’s how I felt anyway. Yeah.
Maria Sclafani 1:10:18
I certainly felt that way. A little bit. The neurologist eventually referred me to a vascular specialist. And he said, You know, so I think I think we’re done. You don’t need to continue to see me, I think you have to go see this vascular surgeon. Because they discovered or determined, I should say, the cause of my strokes. It was a dissection in my carotid artery. On my right side.
Bill Gasiamis 1:10:49
Ah, wow. Okay.
Maria Sclafani 1:10:52
So that was in January. So I had the strokes in September, and then they waited a few months to then do a CT scan a follow up CT scan in January. And they got the results. And he said, so it’s clear, you know, now that there’s not like a bunch of blood and stuff in the CT scan, we can see that you have.
Maria Sclafani 1:11:14
So he said it was a pseudo aneurysm. So not an aneurysm, but just like a bump or an abnormality in my arm in my carotid artery and actually have one in both carotid arteries on the right and the left.
Bill Gasiamis 1:11:31
So have you been diagnosed a blood thinner, not diagnosed prescribed a blood thinner.
Maria Sclafani 1:11:37
I was. And so I was prescribed a blood thinner after the strokes and baby aspirin. And they told me after they figured out the cause to stay on the baby aspirin, and to go off of the Plavix, or, you know, whatever it was so, and they said, I would have to be on that for the rest of my life, which is fine. You know, yeah,
Bill Gasiamis 1:12:00
it’s a small price to pay to have to decrease dramatically your risk of another clot. Did it help when you found out what the cause was? Did that kind of help?
Maria Sclafani 1:12:14
It did a little bit, but it was kind of frustrating, because, you know, first off my family, and my parents are scientists, so they know a little bit. My dad worked at the Med med school. So University of Colorado Health Sciences Center, which is based in Aurora and Colorado, so he worked there.
Maria Sclafani 1:12:35
So he like knows a lot of doctors. But he’s not a doctor himself. And so we were like, What is a pseudo aneurysm? Like, we’ve never even heard of that. And then it was sort of like, okay, what’s a dissection? Didn’t know what that was, you know? And then what is this mean? And by the time I made it to the vascular specialist, it was a few months.
Maria Sclafani 1:12:58
And he was very nice. And he said, you know, this could be fibromuscular dysplasia. But it might not be, there isn’t really a test for FMD. So I can’t give you a test. And my recommendation is just that we monitor it.
Bill Gasiamis 1:13:19
Yeah, that’s okay. That’s good. That is a really good outcome. Now that, you know, its cause and you have somebody who knows about these things, and that they can help you monitor it and keep an eye on it. That’s a really good outcome. I like that. What was the hardest thing about stroke for you?
Maria Sclafani 1:13:42
I think it was actually, like, basically, maybe a year after the strokes. When I got this, I went through this depressive episode. And because I convinced myself that I recovered from the strokes and I was fine. That’s what you know, like, the whole summer, the previous that summer had been like, great. And, you know, my brother had a baby.
Maria Sclafani 1:14:08
So I have a nephew and so like, you’re all excited about that, and all this stuff. And so, I you know, I traveled all summer, you know, I done really well, I got to see a bunch of people. So I felt like I’d recovered. So like, it was over. And then it was like, Okay, maybe, maybe it’s not over. You know, it’s not something that I can like be I guess it’s not something that I can like, you know, overcome. I think maybe this is just how I am now.
Bill Gasiamis 1:14:47
So what I was gonna say what has stroke taught you?
Learning patience and adapting after a recurrent stroke
Maria Sclafani 1:14:56
Um, so I would say that and I get asked this kind of a lot. But I get asked some variation of that question. But I think that I was very judgmental before I had my strokes of other people. I didn’t have a lot of patience. And I, it was sort of like, well, if I can do it, then why can’t you do it, that kind of attitude. And, I mean, I’m a very type A personality, like, I was, like, you know, did very well in high school.
Maria Sclafani 1:15:31
And then I went to a good school for unit for college, I went to a women’s college actually. And I got straight A’s there. And then I wrote a thesis, and I got, you know, did well on my thesis, and I went to grad school in Colorado, and I got straight A’s in grad school. And then I went back to grad school. For library science, you’re gonna get straight A’s there. So I felt like I like knew, you know, I knew everything.
Maria Sclafani 1:15:58
And I didn’t understand why more people couldn’t be like me, or whatever. I don’t know a better way to put it. But I feel like I was very harsh. And I think it created some problems for me when I started my job, because that was my first library job. Out of library school was Wichita State.
Maria Sclafani 1:16:19
So I had never, like I worked in a library at University of Illinois, which is where I went for my degree, I worked as a graduate assistant. So I did work in a library there. But this was like my first time, having a full time tenure track, faculty librarian position. And so I think there was some ruffled feathers at first.
Maria Sclafani 1:16:44
But after the strokes, it was like, I couldn’t do anything. Like I couldn’t really do much. I couldn’t teach, you know, I had trouble with reference. Um, I had trouble getting dressed, you know, had trouble putting on clothing. And like, you know, one time I showed up to the Reference Desk to do my shift. And it was like, 130, and my coworker was like, What are you doing here? And I was like, Oh, my shift starts at two.
Maria Sclafani 1:17:16
And he was like, right? It’s 130. And I was like, Oh, I wanted to get here early, like that sense of time, you know? And it was just like, like, it was like, Okay, well, I’d want to like leave my office probably at like, maybe 151 55. So I could walk over to the desk and be there by two, but like, I just left at 130. So it was stuff like that, that I then needed other people’s help with. Because I couldn’t do everything. I wasn’t like a smarty pants anymore.
Bill Gasiamis 1:17:51
anymore. Yeah. Yeah. That’s a pretty big lesson. And it’s understandable. Love shrinks by this say that they learned to be more patient with other people. And they had a deeper understanding of what it was like to be somebody who was struggling. I certainly had to live in a wheelchair for a short amount of time, probably about three and a half, four weeks.
Bill Gasiamis 1:18:14
And then I quickly understood that people in wheelchairs are not just sitting down, which is what I assumed they were doing, they were just sitting there no big deal. It didn’t mean anything. This is pretty crazy, that I had to learn that way. But I’m glad I learned that.
Bill Gasiamis 1:18:30
So there’ll be people listening, hoping to get a little bit of a nugget out of this episode, if you already haven’t picked up a few. What would you say to somebody who’s just started their recovery? And are going through this and struggling a little bit? Well? Or would you be one, maybe one piece of advice you could leave them with?
Maria Sclafani 1:18:53
I would say, um, take your time, in recovery, don’t let anyone rush you. And don’t rush yourself. Because I very much did that. Like, you know, my parents were trying to get me to slow down and I was just like, trying to get right back to work and do all this stuff. But you have to take the time. Um, because and I had to actually go to therapy to learn this.
Maria Sclafani 1:19:17
But like, sometimes your plan A doesn’t work out for like, whatever reason, and My Plan A was like, getting a tenure track faculty position at a university and then going up for tenure. And hopefully, like, right, getting tenure and having job security for life. And that is not it’s not going to happen. It’s not I’m a different person now.
Maria Sclafani 1:19:41
So I have to come up with the plan B of like, what I’m going to do now that I have these limitations or whatever you want to call them with my executive functioning and issues with mental health and things like that. Because I think if I had taken the time to really process what had happened to me, and maybe stayed away from work, like, for longer.
Maria Sclafani 1:20:09
Because I think that, you know, the reality is that they would have gotten on without me, like, you know, like it wouldn’t, the library would not have fallen apart, like they would have been able to continue to function, it didn’t actually need me, I could have stayed home for longer and decided, you know, do I want to do this job or not, because I have been told, and this is all informal.
Maria Sclafani 1:20:33
But I’ve been told that if I had applied for disability, before I went back to work, I would have probably qualified for it easily, because of the fact that I had this extensive brain damage. And they told me, I think two or three parts of my brain, like the front, whatever this is, and then the back, like, you know, major parts of my brain that I would have gotten disability easily. But you couldn’t have told me that at that time.
Maria Sclafani 1:21:09
Because I was like, very focused on going back to work. And so I went back to work, and then you know, I don’t have that job now. But I have other things going on. And I probably will continue to, like, have jobs or work at some to some degree.
Maria Sclafani 1:21:26
But I realized that I have to, like, have different types of jobs that are more flexible, that like allow me to maybe work remotely on certain days when I’m not feeling well, or having mental health struggles, or, you know, to work part time jobs. Because health insurance is a big thing. And until the Affordable Care Act was passed in the US, I mean, like you had to have a job to have health insurance. And now that’s not the case.
Maria Sclafani 1:21:57
And I’m for the first time benefiting from that. Because I do have, I do have income. I have some from January. And I also like have, you know, other jobs and other things I’ve been doing. So I qualify for health insurance through the Affordable Care Act. And now I don’t have to worry about getting a full time job.
Maria Sclafani 1:22:18
So I can have health insurance. I can just like work part time. Yeah, you know, but I really created a lot of stress for myself, and like strife and struggle. So like all the s words, by like not taking the time after the strokes to really process them.
Bill Gasiamis 1:22:44
Yeah, that’s excellent advice. Maria, thank you so much for reaching out. And being on the podcast, I really appreciate it.
Maria Sclafani 1:22:53
Well, I want to thank you for doing the podcast, as like a stroke survivor and a listener of the podcast, you know, I think it’s really important and significant.
Maria Sclafani 1:23:03
And you have said that like you do it, because you feel like there’s this lack, like this, this gap between like, advice people get when they have the strokes and then like, what do they do like after like, there’s nothing to help them. And the people that need this information, like aren’t aren’t necessarily getting the stroke prevention information. So like, this is a way to provide that information. Like, you know, who knew about stroke? ambulances? Yeah,
Bill Gasiamis 1:23:35
who knew about all the things that have been discussed in the last 300? And something episodes? I mean, yeah, I certainly didn’t, I didn’t need to know. So I was oblivious, and you know, comfortably oblivious, no problem I didn’t need to know. So. But I was in dire straits, you know, at one point, and I needed information, and I still need information. And I feel like it’s necessary for other people to have information.
Bill Gasiamis 1:24:05
And I think it’s part of my role now. And also, the need to talk to people that are going through what I’m going through, because as much as a long time has elapsed since my first incident, it was 12 years ago. And nobody wants Nobody that I know, still wants to hear me talk about it for 1212 years on. No one really does.
Bill Gasiamis 1:24:30
And it’s not saying anything about them. It’s just that it gets boring when I talk about it to my family and friends all the time and all that kind of stuff. Like it’s just they can’t. Yeah, they’re all thankfully, healthy and well, and I cannot relate and, you know, it’s your own territory if I start talking about that kind of stuff with them, so I need other people to talk to about it. It’s the thing I like, the most is I lack people who understand me.
Bill Gasiamis 1:25:07
And I find that I get them on the podcast. They understand me, I understand them. And I, and that makes my life a little easier and my mental health a little better. And I also feel like I’m being useful. And I couldn’t do without you guys. So you know, being again, me talking about stroke on my own on a podcast to the world would be pretty boring.
Bill Gasiamis 1:25:35
You know, I need other guests. And I’m so glad that I reached out on Instagram and got inundated now I’ve got the work ahead of me. I got inundated. I’m not kidding you. Like, I think I had 30 responses. Usually, that’s 30 episodes. And that’s half more than half of the year. So, you know, thank you for acknowledging me. I really appreciate it. But I want to acknowledge you guys as well, like it’s a team effort. Yeah.
Maria Sclafani 1:26:08
Well, I think what people need most generally is to not feel alone. Yeah, you know, and this really helps with that this type of podcast and
Bill Gasiamis 1:26:19
I’m glad. Thank you for being on the podcast.
Maria Sclafani 1:26:22
Thank you so much for having me. Well,
Bill Gasiamis 1:26:24
thanks again for joining us on today’s episode. I hope you enjoyed my chat with Maria, and found inspiration in her journey of advocating for proper medical care, and overcoming the challenges of stroke recovery. If you’re interested in my book about stroke recovery, you can grab a copy on Amazon by visit or by visiting recoveryafterstroke.com/book.
Bill Gasiamis 1:26:47
To learn more about Maria, including her social media links and to download the full transcript of the interview, head over to recoveryafterstroke.com/episodes. A huge thank you to everyone who has left a review it means the world to me. Reviews are crucial for podcasts to thrive, and feedback helps others find this valuable content, making their stroke recovery journey a little easier.
Bill Gasiamis 1:27:14
If you haven’t left a review yet, please consider leaving a five star review and a few words about what the show means to you on iTunes, and Spotify. If you are watching on YouTube, leave a comment below, like the episode and subscribe to the show on your preferred platform to get notifications of future episodes. If you are a stroke survivor with a story to share, come and join me on the show The interviews are unscripted, and you do not require to plan for them.
Bill Gasiamis 1:27:45
Just be yourself and share your experience and help others in a similar situation to you. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Just visit recoveryafterstroke.com/contact Fill out the form and I will get back to you with details on how we can connect via zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:28:12
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 at 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 gassy armas, the content is intended to complement your medical treatment and support healing.
Intro 1:28:45
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 1:29:06
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 called triple zero in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:29:33
While we aim to provide current quality information in our content. We did 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 Recurrent Stroke Survival: Maria Sclafani appeared first on Recovery After Stroke.
1 hr 30 min
July 15, 2024Recovering From Stroke – Fares Raffoul
Comprehensive Guide to Recovering From Stroke: Advanced Techniques and Best Practices
Recovering from a stroke is a critical process that helps survivors regain independence and improve their quality of life. Our approach to stroke rehabilitation integrates cutting-edge therapies and personalized care plans to address the unique needs of each patient. This comprehensive guide outlines the most effective strategies and interventions for successful stroke recovery.
Understanding Stroke Rehabilitation
What is Stroke Rehabilitation?
Stroke rehabilitation is a multifaceted program designed to help individuals recover as much function as possible after a stroke. It involves a team of healthcare professionals who work together to create and implement a tailored rehabilitation plan.
Goals of Stroke Rehabilitation
The primary goals of stroke rehabilitation are to:
Restore lost skills and abilities
Prevent complications
Improve physical and cognitive functions
Enhance overall quality of life
Key Components of Recovering From Stroke
Physical Therapy
Physical therapy focuses on improving movement and coordination. Therapists use various exercises and techniques to help patients regain strength, balance, and mobility.
Techniques and Exercises
Gait Training: Exercises to improve walking and balance
Strength Training: Resistance exercises to build muscle strength
Range-of-Motion Exercises: Movements to enhance flexibility and prevent stiffness
Occupational Therapy
Occupational therapy helps patients relearn daily activities and improve their ability to perform tasks such as dressing, eating, and bathing.
Adaptive Techniques
Task Modification: Adapting tasks to make them easier to perform
Use of Assistive Devices: Tools and equipment to aid in daily activities
Energy Conservation: Strategies to manage fatigue and conserve energy
Speech and Language Therapy
Speech and language therapy addresses communication difficulties and swallowing problems often experienced by stroke survivors.
Speech Improvement Strategies
Language Exercises: Activities to enhance speaking, listening, reading, and writing skills
Swallowing Techniques: Exercises to improve swallowing and prevent aspiration
Communication Devices: Tools to aid in communication, such as speech-generating devices
Psychological Support
Recovering from stroke also includes psychological support to help patients cope with emotional and mental health challenges.
Counseling and Support Groups
Individual Therapy: One-on-one sessions with a psychologist or counselor
Support Groups: Group sessions with other stroke survivors for mutual support
Cognitive Behavioral Therapy (CBT): Techniques to manage negative thoughts and behaviors
Innovative Techniques for Recovering From Stroke
Robotic Therapy
Robotic therapy uses advanced robotics to assist with repetitive motion exercises, enhancing motor recovery and reducing fatigue.
Benefits of Robotic Therapy
Consistency: Provides consistent and precise movements
Intensity: Allows for high-intensity training
Feedback: Offers real-time feedback to track progress
Virtual Reality (VR) Therapy
Virtual reality therapy creates immersive environments for patients to practice movements and improve cognitive functions in a controlled setting.
Applications of VR in Stroke Rehabilitation
Motor Skills Training: Simulated activities to improve hand-eye coordination
Cognitive Training: Virtual tasks to enhance memory, attention, and problem-solving skills
Motivation: Engaging and interactive experiences to keep patients motivated
Constraint-Induced Movement Therapy (CIMT)
CIMT involves restricting the use of the unaffected limb to encourage the use of the affected limb, promoting neural plasticity and motor recovery.
Principles of CIMT
Forced Use: Limiting the unaffected limb to force use of the affected limb
Intensive Practice: Repetitive and intensive practice of targeted movements
Shaping Techniques: Gradually increasing the difficulty of tasks
Personalized Rehabilitation Plans
Assessment and Evaluation
A comprehensive assessment is crucial to developing an effective rehabilitation plan. This includes evaluating the patient’s physical, cognitive, and emotional status.
Evaluation Tools
Functional Independence Measure (FIM): Assesses the level of a patient’s independence
Berg Balance Scale: Measures balance abilities
Mini-Mental State Examination (MMSE): Evaluates cognitive function
Goal Setting and Progress Monitoring
Setting realistic and achievable goals is essential for maintaining motivation and tracking progress.
Goal Setting Strategies
SMART Goals: Specific, Measurable, Achievable, Relevant, and Time-bound goals
Regular Reviews: Periodic assessments to adjust goals and interventions
Patient Involvement: Encouraging patient participation in goal setting
Family and Caregiver Involvement
Education and Training
Educating family members and caregivers about stroke recovery and rehabilitation techniques is crucial for providing effective support.
Caregiver Training Programs
Hands-On Training: Practical sessions to teach caregiving skills
Educational Workshops: Information on stroke recovery and management
Support Services: Resources and support groups for caregivers
Long-Term Stroke Recovery
Ongoing Therapy and Maintenance
Recovering from stroke is an ongoing process that requires continuous effort and therapy to maintain and improve function.
Maintenance Strategies
Home Exercise Programs: Customized exercises to perform at home
Community Programs: Access to local rehabilitation services and activities
Telehealth Services: Virtual therapy sessions for ongoing support
Prevention of Secondary Strokes
Preventing secondary strokes is a critical aspect of long-term recovery and involves managing risk factors and making lifestyle changes.
Risk Factor Management
Blood Pressure Control: Regular monitoring and medication adherence
Healthy Diet: Nutrition plans to reduce stroke risk
Physical Activity: Regular exercise to maintain cardiovascular health
Recovery After Stroke Podcast Interview With Fares Raffoul
Recovering from a stroke, Fares Raffoul shares his journey from carpenter to survivor, highlighting resilience, neuroplasticity, and determination.
(Transcript Coming Soon)
The post Recovering From Stroke – Fares Raffoul appeared first on Recovery After Stroke.
1 hr 9 min
July 08, 2024Diabetes, High Blood Pressure, and Stroke: Deven Matthews’ Road to Recovery
Understanding the Link Between Diabetes and Stroke
Introduction
Diabetes significantly increases the risk of stroke. This article aims to provide comprehensive information on the relationship between diabetes and stroke, including symptoms, causes, prevention strategies, and treatment options.
What is a Stroke?
A stroke occurs when the blood supply to part of the brain is interrupted or reduced, preventing brain tissue from getting oxygen and nutrients. This can lead to brain damage and long-term disability or death.
How Diabetes Increases Stroke Risk
Mechanism of Increased Risk
Diabetes impairs the body’s ability to produce or use insulin effectively, leading to high blood glucose levels. Over time, elevated glucose levels can damage blood vessels, including those in the brain. This increases the likelihood of a stroke.
Contributing Factors
High Blood Pressure: Common in diabetics, high blood pressure damages blood vessels.
High Cholesterol: Excess cholesterol can form plaques in blood vessels, narrowing them and restricting blood flow.
Obesity: Often associated with diabetes, obesity further increases stroke risk.
Symptoms of Diabetes-Related Stroke
The symptoms of a stroke in people with diabetes are similar to those in the general population:
Sudden numbness or weakness, especially on one side of the body
Confusion, trouble speaking, or understanding speech
Difficulty seeing in one or both eyes
Trouble walking, dizziness, or loss of balance and coordination
Severe headache with no known cause
Diagnosing Stroke in Diabetics
Healthcare providers use various methods to diagnose stroke:
Physical Exam: Assessing muscle strength, coordination, and cognitive function.
Imaging Tests: CT scans and MRIs to visualize brain activity.
Blood Tests: To check glucose levels and other potential risk factors.
Electrocardiogram (ECG): To identify heart issues that may contribute to stroke risk.
Treatment Options
Immediate Treatment
Clot-Busting Drugs: Administered to dissolve clots and restore blood flow.
Mechanical Thrombectomy: Surgical removal of large clots from brain arteries.
Long-Term Management
Blood Thinners: To prevent new clots from forming.
Blood Pressure Medications: To manage hypertension.
Statins: To lower cholesterol levels.
Prevention Strategies
People with diabetes can reduce their stroke risk through lifestyle changes and medical management:
Monitor Blood Sugar Levels: Keep glucose within the target range.
Control Blood Pressure: Regular monitoring and medication adherence.
Healthy Diet: Focus on low-fat, high-fiber foods, and limit salt intake.
Regular Exercise: Aim for at least 150 minutes of moderate aerobic activity weekly.
Weight Management: Achieve and maintain a healthy weight.
Quit Smoking: Smoking cessation is crucial for reducing stroke risk.
Regular Check-Ups: Frequent consultations with healthcare providers to manage risk factors.
Conclusion
Understanding the connection between diabetes and stroke is essential for effective prevention and treatment. By managing blood glucose, blood pressure, and cholesterol, and maintaining a healthy lifestyle, individuals with diabetes can significantly reduce their risk of stroke.
By incorporating these strategies, those with diabetes can take proactive steps to mitigate their stroke risk and improve overall health outcomes.
Interview With Deven Matthews
Deven Matthews experienced a stroke due to undiagnosed diabetes and high blood pressure, leading to a journey of recovery and health transformation.
Highlights:
01:54 Introduction
03:02 Diabetes And Stroke Recovery
08:02 Symptoms Of A Stroke And Seeking Medical Attention
17:46 Reversing Type 2 Diabetes Through Diet And Exercise
23:07 Coping With Stroke’s Emotional And Mental Challenges
28:10 Returning To Work After A Stroke
35:27 Sustainable Busy-ness After Stroke Recovery
43:58 Disability And Faith
50:02 Feeding The “Recovery Tiger” vs. The “Self-Pity Tiger”
1:02:08 Medical Interventions, And Hope For Improvement
1:03:12 The Hardest Thing About Stroke
1:06:44 FDA-Approved Neurostimulation Device For Stroke Recovery
1:09:59 Lessons From The Stroke
Transcript:
Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au. Hey everyone, before we dive into today’s episode, I wanted to share something special. In episode 305 I interviewed Catherine Randabel, the inventor of HeadBed a product revolutionizing hair salons, especially for stroke survivors.
Bill Gasiamis 0:20
The HeadBed provides excellent neck and head support during hair washes, reducing strain, and promoting better blood flow. For stroke survivors. This means lowering the risk of arterial damage and easing the concerns about another stroke. It ensures a safe, enjoyable salon experience.
Bill Gasiamis 0:40
I’m thrilled to support a product that aligns with my mission of stroke prevention and safety. In our interview, Catherine explained how HeadBed’s ergonomic design prevents neck hyperextension, a common issue increasing stroke risk. With the HeadBed you can feel confident and comfortable at the salon knowing your health is prioritized. If you’re a stroke survivor or know someone who is the head bed is a must-have for your next salon visit.
Bill Gasiamis 1:11
Check out episode 305 for my full interview with Catherine and learn how this product can make a difference. For those in the United States. Visit headbedusa.comheadbedusa.com to get yours today and enjoy peace of mind at the salon. Now I’d also like to mention my book The Unexpected Way That A Stroke Became The Best Thing That Happened. 10 tools for recovery and personal transformation. It fetches inspiring stories from 10 stroke survivors and offers hope for those on the road to recovery. For more information visit recoveryafterstroke.com/book or search my name Bill Gasiamis on Amazon.
Introduction – Deven Matthews
Bill Gasiamis 1:54
Well, hello, everyone. Welcome to another episode of the recovery after stroke podcast. This is episode 310. And my guest today is Deven Matthews. Deven’s story is a powerful reminder of the importance of prioritizing our health. Deven was living with undiagnosed high blood pressure and diabetes, which resulted in a sudden stroke that changed his life.
Bill Gasiamis 2:17
In this compelling episode, Deven shares his journey of resilience and recovery, detailing the symptoms that led to his stroke, the challenges he faced during his treatment and the incredible steps he took to reverse his type two diabetes without medical intervention. We also discussed the emotional and mental struggles post-stroke, the significance of community support and the importance of maintaining a balanced between work and personal life. Deven Matthews, welecome to the podcast.
Deven Matthews 2:51
Hi Bill it’s really a pleasure to meet you. Thank you for having me.
Bill Gasiamis 2:56
It’s my pleasure. Also, thank you for being here. Tell me a little bit about what happened to you.
Diabetes And Stroke Recovery Journey
Deven Matthews 3:02
Well, two years ago, February, I had an ischemic stroke. It was like It landed on the left side of my brain. So my right side is affected. And it was a scare, stroke is something I never would have even anticipated happening. Like many people have strokes as a total surprise. I had undiagnosed high blood pressure and undiagnosed diabetes. So a horrible combination. And I woke up one morning and sure enough it was happening. And just like most of your listeners and the other people I heard on these podcasts. It’s alarming, it’s startling, it’s frightening. And it’s a life-changing event.
Bill Gasiamis 3:52
Deven, pardon my ignorance. How did you not know you had both high blood pressure and diabetes? How do you go about life not experiencing any negative impacts of those conditions? I don’t get it.
Deven Matthews 4:14
Good question. A lot of it was turning a blind eye I will admit a lot of it was I was extremely busy working a lot and I didn’t have time to be sick or take care of myself. So it kind of just went undiagnosed so my advice now is go see your doctor at least three times four times a year and don’t be afraid of what they’re gonna say because the alternative is worse.
Bill Gasiamis 4:41
I reckon busyness has put a lot of people in to an early grave. So what does busyness mean for you? Like what was that like? I have the same issue. When I first went through my two brain hemorrhages the first two. But most importantly, the first one, I ignored the numbness down my left side for seven days.
Bill Gasiamis 5:10
And it was because I was busy, I had work to do, I had a client to please, I needed to get paid. I needed to do all those things other than stop for five minutes and go and spend some time at a doctor and tell them what my symptoms were my wife tried to convince me to go my chiropractor tried to convince me to go, I argued with both of them. And when I eventually went, they said to me, we found a bleed in your brain. What was your busy schedule like? How many hours a day? What kind of work were you doing?
Deven Matthews 5:50
I’m a married man. Our marriage is fantastic we’ve been married 27 years, we have six kids say no more. So between working full time, and running six kids around, it was just crazy. busy times. And you know, I’ve certainly learned from the stroke to just slow down and don’t take life so seriously. I mean, like you there was a stress of earning a living and keeping the income coming in, and kids to soccer and piano lessons wherever they’re going and keeping up with them.
Deven Matthews 6:27
And so it was difficult. It’s fine. I don’t blame my family. I don’t blame anything. It’s completely my responsibility. And I have learned clearly. Did your kids ever hear no from you? I can’t take you to be in practice. I can’t take it soccer. You have to find your own way there. Did they ever hear no from you guys? No. And I have to give credit to my boss who she’s just as busy with the kids as I am.
Deven Matthews 6:57
And I don’t want to say they took up all of our time, because the good part of what I was doing is working as well. And so it just I don’t know, you got to make sure your priorities are in the right spot. And your health is definitely one of those priorities that needs to be near the top.
Bill Gasiamis 7:14
And it’s about balance. It’s also about being there for the kids doing the right thing for the family, supporting everyone. And then also keeping yourself the same privilege.
Deven Matthews 7:26
Right. Trying to stay sane the whole time.
Bill Gasiamis 7:31
What are the ages of the children? What do they range from?
Deven Matthews 7:35
At the time? My oldest was 23. My youngest was eight. So it’s just a big wide range, mostly adult children. So that doesn’t require as much care as the other ones. But the years leading up very, very busy, busy lifestyle.
Symptoms Of A Stroke And Seeking Medical Attention
Bill Gasiamis 7:56
On the day of the onset, what were some of the symptoms that you experienced? That you thought something was not right? Did you think something’s not right? I need to do something about this. How did you go about dealing with what was happening on the actual day?
Deven Matthews 8:15
Well, It was a Sunday morning, and I woke up and I woke up about nine you know, Sunday sleeping a little bit. And it just felt weird. I’ve heard your guests on this podcast that before, but something just felt off. Weird. Not really. See you’re shaking your head, you probably remember it just feels off. Something’s weird. And that probably. And I laid in bed for an hour and scrolled on the jawbone. You know I can do and then I decided okay, I’ll get up and get ready. So I got up and I just felt off balance. It felt like somebody was pushing my left side.
Deven Matthews 8:58
Over Sorry, I was like falling like walking on a moving train. The same type of feeling right. And I got up and went to the bathroom. And as I walked in the bathroom, I hit my shoulder against the doorframe I thought. What? How did I miss the doorframe, my whole life. I’ve never done that. And got in the shower. And in the shower, I reached for the bar suit with my right hand and I missed and I was like, What is going on? grayed out contrast. Everything was still weird, wonky.
Deven Matthews 9:37
And I went to the kitchen and I tried it. I thought oh, eat something. I appealed a banana. And I completely miss my mouth. I was taught that something is way off. Now this should have been enough science but the thing that finally pushed me over was it was a Sunday like I said, and I played the organ for my congregation at church, I played the piano since I was eight years old. I used to know I played one-handed.
Deven Matthews 10:07
And I went to my piano here to practice the songs for that service that day. And my right hand was missing all the notes. And like I said I’ve been playing since I was eight years old, and I knew something’s weird, something’s weird. And I go by symptoms, and it says, stroke.
Intro 10:27
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind, like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 10:51
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Deven Matthews 11:29
sort of went to my wife who was getting ready for church in the bathroom and said, Hey, I think I’m having a stroke. And she looked at me and her face froze. And she said, Gavin, your right side is totally drooping. I said, Let’s go. Let’s go to the hospital is only like three minutes from my house. She jumped in the car. I gave the kids kiss goodbye just because I didn’t know what I was going to.
Deven Matthews 11:55
And I walked into the ER I was halfway across the parking lot with Rachel and the guy came out and said, what’s wrong with you? And I said, I think I’m having a stroke. He says stop, don’t move. He brought a wheelchair on for sure was liability reasons. He rolled the end and the doctors just went to town. Raise your arms. Okay. And you can’t follow my finger with your eyes, things like that. And they said get it back there. And sure enough, ischemic stroke.
Bill Gasiamis 12:24
Yeah. Were you a lot heavier at the time?
Deven Matthews 12:28
Yeah, yeah.
Bill Gasiamis 12:30
How much heavier?
Deven Matthews 12:32
I was over 300 pounds. I’ve lost 110 pounds since my stroke.
Bill Gasiamis 12:37
Okay, I have to convert that kilos. Because every episode most of my guests are overseas. So 300 pounds, to kilos. It’s 136 kilos that’s quite heavy. And you’ve lost 120 pounds. Yeah, 54 kilos. You know, that’s the size. The full grown adult 54 kilos, that’s another person.
Bill Gasiamis 13:20
So definitely, then, if somebody had seen you, without the droopiness, and all that kind of stuff, in a hospital setting, and you thought you felt unwell, they would have asked you the questions. Have you had your blood pressure checked? Have you got diabetes, that kind of stuff that would have definitely asked you those things? Because often those conditions come hand in hand with people who are heavy. So at that stage, given you the red carpet treatment. And then what happened?
Deven Matthews 14:01
They put me in a bed, put a TPA through me MRI, the whole nine yards. And the doctors kept saying, you know, they come in every 20 minutes or so and say raise both arms, because so they could see how the right was committed to a little action.
Deven Matthews 14:20
I could do pretty well. But slowly so over the hours the right arm was weaker and weaker and weaker until finally I couldn’t move it seemed to turn right ladybird asked me to move my foot up and down my left leg like side with my ankle, cross my leg and originally I couldn’t do it. So it was there completely paralyzed on the right side. And the ironic thing is, I didn’t know much about stroke clearly.
Deven Matthews 14:49
But I had heard things like people lose their cognitive ability to recall their memories. There. A lot of learning language things like that. I don’t want to lose my memory. I don’t want to lose memories for my kids when we’re sorry, our wives, what can I do? So while I was laying there in the bed, I was reviewing music theory in my head. I was saying things like, okay, the key of D has two sharps. The key of E flat major has for flatss, and I was going over music theory over and over and over, hoping I can hold on to it.
Deven Matthews 15:27
Luckily, I mean, I did I didn’t lose the data. It’s still real music. It’s so like I said, play the piano one handedly. But I do miss being able to play Boolean solvency. So I can say that scales, arpeggios that saved my cognitive might interpret lay me in the hospital bed. Also the location of the stroke wasn’t impacting that part of your brain. So that was good. And do you know where the blood clot kind of stopped where it landed? Which part of the brain?
Deven Matthews 16:03
I don’t and I tried to do some research for this podcast I just couldn’t find out in time.
Bill Gasiamis 16:10
That’s okay, so then you’ve spent some time in hospital how much time?
Deven Matthews 16:16
I was there five days. First night in the ER, two nights in ICU. And then what night and a regular room so I guess four nights. And then I was shipped out to a rehabilitation hospital, where I was for three weeks.
Bill Gasiamis 16:36
And in those three weeks, what did you have to overcome clearly your right hand, but what else kind of the right foot the need to survive? If you’re going to that person in the ER, even, I couldn’t sit up, I couldn’t rollover, I couldn’t really get comfortable. I couldn’t move anything I’m gonna read said. So the long haul back to be mobile, started in the rehab hospital. Because in the hospital hospital, there is no PT or OT, or speech therapy, even that uncertainty, I went to the
Deven Matthews 17:13
facility
Speaker 1 17:16
over that word rehab, but um, again, once I was in rehab, I was actually very happy because I had physical therapy, occupational therapy and speech therapy at least once a day, at least once, sometimes even twice. And you’re welcome to anybody that would come in and help me I welcomed it, because I’ve saw them as my key ticket to get back to normal, whatever normal, it’s, you know, so thick, man.
Reversing Type 2 Diabetes Through Diet And Exercise
Deven Matthews 17:44
I do like what, let’s do it. Let’s get up. Let’s move. It’s something I remember the first night, the first day, they had to put me on this machine to even stand me up. And it looks like some medieval torture device. But um, I hit the wrap my hands around the top, you lifted me up and I kind of stand out and I’m not so good because I was doing it on my own that had dementia learn how to do it without a machine.
Bill Gasiamis 18:09
With the right leg now how does that feel day to day?
Speaker 1 18:14
Now, decent my right leg is probably recovered. Again, it’s been two and a half, two years and three months. I’ve had we have about 80% of my leg back totally. My big hang ups the ankle ankle, my ankle just won’t budge a little bit, but not a lot.
Deven Matthews 18:32
Arm again I have about 60% rescind fingers are hard. That’s very rare. The piano doesn’t really happen on the hand. But I can move a lot with my arm just not as well as most.
Bill Gasiamis 18:49
When you were in hospital, did they then immediately diagnosed diabetes and high blood pressure?
Deven Matthews 18:55
Yes. And we have meds for it right away I’m still on meds for it. I’m happy to say a little bit. I got my emergency down to four. So they said you’re no longer considered a diabetic. So that’s good news. It took me out for the insulin. But the high blood pressure still on meds. And monitor it now much more often than you think you’re at home.
Bill Gasiamis 19:20
Type two diabetes is one of those conditions that people don’t realize how much they can reverse it how easy it is to reverse. Well, I know I said the word easy, but it can be reversed without medical intervention. Right? Correct. Yeah. How easy was it for you to lose the weight and reverse it?
Deven Matthews 19:43
That first month simple because I was in the hospital. They controlled everything I eat right? I was sent on my own to drive in McDonald’s to go to get ice cream. And when I got out of the hospital, I just stayed on that zero sugar diet.
Speaker 1 20:00
I mean, yes, eat fruit And if there’s sugar in like, a piece of bread, okay, but I do not eat any refined sugars, cookies, cakes, soda, I cut soda totally out of my diet. That was not easy, because that was frickin quite a bit of soda before. But again, like you said, I don’t like to use the word easy, but it’s not difficult to cut that stuff out of your life. After a week or two, we kind of lose the craving for it.
Deven Matthews 20:26
There’s obviously a curve, you know, but once you get over that hump, it’s kind of smooth sailing. Even now, today, I drink one soda a year on my birthday, I’ll go get a soda and enjoy it about I nursed that thing I make it lasts all day, and no soda at all. And so it’s things like that. I’m drinking a lot of water. It’s fine. Do I miss coke and Mountain Dew? Well, yes, but I know that turn it into three back in the hospital, the second shot, and they don’t want that.
Bill Gasiamis 20:59
I’m with you. I stopped drinking sodas. I’d say it was three or four months after my first two brain bleeds. And I and I used to drink Coke. And people when I’d visit people, my brother or whoever at their home, they knew false coming over that they should have cochlear because if they had Pepsi, or if they had another one, I’d be like, no I’ll just have a water.
Bill Gasiamis 21:24
And they didn’t want to disappoint me. So they would get me a Coke. And my thing was ice. So the glass needed to be full to the top of ice. And then you pour the coke over the top, which isn’t a lot of coke. Most of it stays in the can, right? And then you sip it through. And then you keep refilling the ice with coke. And then it’s always frosty, and cold and amazing.
Bill Gasiamis 21:55
Just fabulous. And then really bad for you at the same time without knowing it. So, yeah, so I stopped doing it. And then every once in a while, very, very rarely. I reckon in the last 12 years. I’ve been lucky if I’ve had five cans in total of soda. So on your birthday, you get a can of Coke or Mountain Dew. Which one do you prefer?
Deven Matthews 22:24
A Coke absolutely.
Bill Gasiamis 22:26
Yeah. The original recipe, right? Yes. Constantly. Yeah.
Bill Gasiamis 22:33
When is your birthday?
Deven Matthews 22:35
In March 26.
Coping With Diabetes And Stroke Stroke’s Emotional And Mental Challenges
Bill Gasiamis 22:37
March 26. You’ve just turned 50? Yes, I did. Okay, I’m turning 50 In a week from now. And I might celebrate it with I don’t know whether it’ll be with a coke. But it might be alcohol, I might have a drink of alcohol, which I very rarely have. So then you’ve gone through rehab, and then you’ve come home? What was it? Like coming home? How? How did you cope with the transition from hospital to home?
Deven Matthews 23:14
Obviously, huge, huge adjustment. I was in a wheelchair. And so I had to learn to navigate that. Luckily, thank goodness is we had a home where the master bedroom was downstairs, thank goodness. And we didn’t know when we bought the house, I was going to have a stroke. So that was a blessing. So I didn’t have to worry about stairs.
Deven Matthews 23:39
And I just had to learn to navigate the wheelchair around. It was hard because you lose all ability to do things like the dishes or laundry or a mass. And with that many kids have been in the house, even adult children. There’s a lot of dishes and laundry and medicine. And it was hard to just kind of let it go by it was also hard because I was always on asking my wife for help.
Deven Matthews 24:10
There’s laundry included you this and that. And can you help me take a shower? Can you help me get in bed? Can you help me and she’s got the liquid to worry about again. Luckily most of them were adults, but there was still the need when you have kids who don’t appear really stopping you. Right? So it was just a huge adjustment.
Deven Matthews 24:28
But um, and on top of that the thing I’ve heard your people your guests talk about before is the emotional the depression, the sadness, which is out of nowhere, you’re in tears and you’re crying and my wife is saying what’s wrong, Sean Sean and we’ve seen nothing really nothing really backed back up a little bit when I was in the hospital that first night the first night in the ER, after my referee poem and it was like two in the morning I was alone. I just burst into tears and I don’t know if it was fear of the unknown it was what’s going to happen. I was the benefit carrier for our family health insurance. And so I couldn’t just quit soccer game, you know?
Deven Matthews 25:14
All this unknown, how am I going to be a vegetable? I’m going to every conveyor belt loop again, am I going to be able to play piano again? Now it was albums, little things, and I just cried and cried and cried and a nurse walked in and just patted my hand and oh, it’s going to be okay. It’s going to be okay. And I bet no one’s not. But if myself now could tell myself then what it’s going to be like I would, I could explain that not as bad as you think it is. But once I was home, back to that, the emotional ups and downs and rollercoasters, it was hard to be a social, it was hard to be fun, it was hard to be laughy, it was hard to be teasing the kids. It was just very gray in heart. So now the physical but the mental side of everything.
Deven Matthews 26:03
Did you seek out someone to support you with that to help you with that? I talked to my primary care. And her answer was medicine. Well, numerous medicine will be fine. But here’s all the side effects. I’m gonna put my body through anything else, you know. So I decided to just self not self medicate, but self therapy, art therapy and dessert. I got books, I went online, I read a ton of information, including things you had written and posted your branding and things like that.
Deven Matthews 26:37
And people in your podcast and it just, I’ve learned that the emotional and mental depression that comes with the stroke in various levels is kind of a given. And so they can just work through it, it gets better. And clearly today, I’m not as bad as I was two years ago. And 900 Close. It’s really it seems like a two year mark, hey, went over a hump emotionally.
Deven Matthews 27:07
And it’s been so much better. But man, those first couple of years, it was tough feelings of despair and defeat. And, and what you’re doing is hard work, which adds to it, you know, and it was not easy but you get through it what other choice do you have?
Bill Gasiamis 27:27
Yeah, it’s not quite your mindset. Giving up on USA, it’s more your emotional state and perhaps having emotional experiences that you’ve never dealt with before. So you didn’t really have a catalogue of how to overcome it or resolve it. It sounds like your mindset was still pretty upbeat. But your your emotional state was the one that was taking a bit of a was challenged.
Deven Matthews 27:57
Yes, that’s absolutely right. Perfect.
Returning To Work After A Diabetes And Stroke Stroke
Bill Gasiamis 28:04
At the beginning, when we spoke, you mentioned that Sunday you were getting ready to go to church. How soon after you got back from home? Are you able to get back to church? Well, again, I didn’t want to accept the stroke as a change in my life. I knew it was I now would know it is but I was like, no, just keep going. So I took a couple of weeks off. And then I went to church in a wheelchair. I hadn’t arrived persuaded him wheelchair. And it was good to see people who’s good to be involved. In fact, in all aspects of my life, I try not to let the stroke impact too much what was going on.
Deven Matthews 28:45
Even in my work, when I had my stroke. I am I teach for a living, and a teacher the college actually. And the day after my stroke, I called my boss and I said, Hey, I had a stroke. Ooh, okay, we’ll cancel your classes get you substitutes. I said, No, no, no, no. I have two classes that need on campus once a week. Can I take those classes and just have them online for a few weeks?
Deven Matthews 29:18
And he was like, are you sure? And I said please. He said okay? And then I already had three classes online. So I had five classes all online. And that second night I called the nurse and I said, Can you put me into work shirt and I wrote a tape loop and I sat on my laptop and I taught my classes from the hospital. I didn’t do live lectures. I just would answer the questions and assignments and everything.
Deven Matthews 29:45
And the nurse was like what are you doing? I said working I have to make money someone’s going to pay for the hospital bill right? And she said, this is probably really good for your brain to just kind of keep going keep going into it. Who’s the in a way different than what you are. But I’ll tell you five weeks later, I was back in the classroom, I sent an email to my students. And I said, class, we’ll be back on campus this week. And again, I had my wife take me in the wheelchair, and I lectured from a wheelchair.
Deven Matthews 30:18
And my voice is not the same as it was before most stroke patients or survivors will say that. And so I was speaking slower. And the words were not as fluent as they were in the past, I had graduated speech therapy by then. But you can tell even now, there’s still a little bit of numbness in my mouth, that causes me to talk a little bit funny, but I didn’t let it stop me, I just kept working and working and working.
Deven Matthews 30:48
So once I was home, I still had my desk and everything I wrote, wrote our wheelchair up to never teach, do grades and everything else. And I just kept going in a hope that they would kind of normalize my, my life. And the part that was completely abnormal, would kind of learn a bit it can I think it has.
Bill Gasiamis 31:13
Good, often you’d hear strokes of others say they went back to work too soon. And then they realized that they needed to not do that, and then change things. And it’s good to try and go back as soon as you can. Because that is a sense of getting back to a routine a rhythm to being, you know, to being kind of close to your old identity, and all those types of things, it is good.
Bill Gasiamis 31:38
And, whether you’re up for it or not. Your brain’s gonna be the judge of that, and it’s going to give you the feedback, and it’s gonna say, you went back to work too early, my friend, you need to go home and do nothing. Or, this is good for us. We’re loving it. And it is good. And I love the fact that you did that.
Bill Gasiamis 32:02
I was working from my hospital bed as well, sending emails and making phone calls more than anything. The first time. I was in there for about a week. I wasn’t doing too much, but I was doing enough to kind of keep the business ticking. Because without me there, you know, there’s a business and without the businesses they money.
Bill Gasiamis 32:21
Same reason, right. And then we and then I realized the second time after the second blade, things got worse, and I wasn’t able to work, it was actually counter productive to be at work because it would wipe me out. And I wouldn’t be productive and doing the right things anyway. And it was too risky for me to be at work for several months until things started to improve again.
Bill Gasiamis 32:52
And then I went back to work as quickly as I could, once again, I mean, if we’re not working, even if our pursuits are not our passion, even if our sheets are not you know, the most noble or whatever they are, it’s still great to be able to get up and go somewhere, even if it’s not work for money, even if it’s just volunteering.
Bill Gasiamis 33:17
And I did a lot when I couldn’t work for money. I was volunteering for the Stroke Foundation, I’d go and do presentations on stroke prevention and awareness and know the signs of stroke. And that was that gave you a sense of purpose something to put your shoes on for to get ready for to plan for. And a lot of the times I failed that that as well, I failed because I forgot about a presentation that I needed to do. And then I would get the phone call.
Bill Gasiamis 33:51
Are you on your way to the presentation? What presentation? And then I’d look at my diary. And then I noticed the calendar reminded me yesterday, or reminded me this morning. And still, all of those things weren’t enough to get me there. So like, it’s still good to have something to aim towards to overcome all of this stuff, even if it’s not work. And even if you’re in a bad way, even if you’re really unwell.
Bill Gasiamis 34:23
Whatever it is that you can do it because it kind of uplifts uplifts the soul, allows you to focus on something else gives you a little bit of sense of purpose and a little bit of meaning. And as hard as it is you still got to try and then reassess once you’re in that situation and then make a decision as to whether you’re going to keep going down that path or not. But I think like I think it’s like a bit of a muscle you know, the more you train the brain to get to work and overcome the challenges and be gentle to it and kind to it, the more that you’re helping it rehabilitate, and you’re helping it get better.
Bill Gasiamis 35:06
So how busy are you now? At work at home? Is it the same amount of busyness? Or have you found a way to be a little less busy and more kind of conscious of how much time and effort you’re putting into other things?
Sustainable Busy-ness After A Diabetes And Stroke Recovery
Deven Matthews 35:27
It’s obviously the latter. I mean, it’s I make sure I don’t miss myself and I take time to just make sure I’m taking care of myself and taking care of things that need to be done. Yes, I’m still working, and I love it. But I’d obviously my day is spent more on with my physical well being, well, well, mindedness, if that’s the word, I exercise, I go for walks every single day. In fact, when I was about a month after I was in the rehab rehabilitation hospital, I went by went to a stroke support group, and met a woman who had been error away from her stroke for about two years.
Deven Matthews 36:12
And she said, let me give you some advice, when you run out your insurance stops paying for physical therapy, go out and hire yourself a personal trainer, she said, I’ve done it. And it’s been the best thing ever. And so I’ve done that. And I spend most of my days now, if I’m not with the trainer, exercising myself here at home, but if they’re just going out for a walk, where I walk around my kitchen island, dude, me little Lego hips.
Deven Matthews 36:42
I lay in my bed, do my arm lifts, and I broke my cord. So I spend my time now working out and I bought my physical body so that I can maintain my recovery as well as my health. And so I would say, I’m just as busy to answer your question, Bill, but it’s just doing different things. I’m not so much crazy busy trying to boost my career to this or do that. But I’m just trying to fill my time with other things that are meaningful.
Bill Gasiamis 37:13
Yeah, that makes sense. That’s good. Because there is crazy busy, they’re busy probably the one that’s not useful. Maybe not helpful all the time. But it’s necessary to be crazy busy sometimes. But I think, ongoing, it’s been unsustainable. That is what we’ve seemed to learn. That’s what I’ve learned about that is that it’s unsustainable, and it doesn’t lead to a good outcome, it can often lead to a negative outcome where we ignore the symptoms of stroke and keep going.
Bill Gasiamis 37:53
That’s not good. That’s crazy busy. And then I’m very busy now as well, because I record my podcasts on a Saturday on a Sunday, and sometimes a Friday. Which means that that takes a lot of my time. But it’s pleasurable. It’s fun, you know, I meet people from all around the world, we share common thoughts, values, ideas, struggles, and it’s a completely different version of busy and it gives me back energizes me instead of drains me and makes me tired and makes me unwell.
Deven Matthews 38:26
So let me ask you something. Would you rather be working on your podcast or working on your book? How was that
Bill Gasiamis 38:36
The book is a terrible thing. It’s a terrible thing. I’ll tell you why. Because you have creative blocks. And I would consider myself a creative, but I never went down the path of creating something like a music track, or a novel or anything like that. I never did any of those things, even though it was obviously in me. And the problem that the book caused was, when I wasn’t writing, I was always thinking about the fact that I wasn’t writing.
Bill Gasiamis 39:10
And when I was writing, and couldn’t write, I was frustrated because I really desperately wanted to write, but I couldn’t write. It’s such a cruel, cruel thing to do to somebody. And, as a result of that, by drag that out for two years, the writing part of it I dragged out for two years. The research part was two years, but that was more enjoyable, more pleasurable.
Bill Gasiamis 39:39
And that was more about trying to find the pattern, trying to understand things, to make the idea that stroke was the best thing that happened to me like interesting and to make it something that people would be curious about, interested to read, to not be confronted by the fact that I said that about a stroke.
Bill Gasiamis 40:04
So that part was a really cool part because there was nothing to do other than think about it. It was all just, you know, listen to somebody’s story, think about it, develop the idea, and then just sit with it, let it just bubble away. But then it was putting pen to paper.
Bill Gasiamis 40:22
And what happened is, of course, is, then I go through all those other things like, like being conscious of the fact that I am not a literary type. I don’t write for a living, I don’t know how to write properly. Is this going to be good enough? Who am I to write a book? Why would I write a book? Who’s going to want to read my book? When they do? It’s probably going to be terrible anyway.
Bill Gasiamis 40:49
I went through all of that stuff. So I wouldn’t change it for anything. I would I love occupying my time writing the book. But it’s more fun. Interviewing people having podcasts because there’s nothing to do afterwards. It’s just to edit it and make it live. It just gives back. That’s it. There’s no it’s not hard. It’s not difficult for me to overcome. That’s interesting.
Deven Matthews 41:22
We’ll you’re doing amazing. That’s, that’s absolutely true.
Bill Gasiamis 41:25
Yeah, thank you. I think it is amazing. I mean, the guy that I was before, stroke doesn’t do any of these things. Like I am very aware that I am not the same person, I am out of like I’m an evolved version of myself. I’m completely aware of it. And I’m not trying to say that I’m perfect. In every way. I’m not, I’m just doing things that I love that are different.
Bill Gasiamis 41:52
I would have spent many Saturdays working. And I won’t spend a Saturday working for the rest of my life, if I can manage it like I’m dead against it. It means that you miss out on a little bit of extra money, and all that type of thing, but it’s okay. I’ve done enough work. And I do enough hours Monday to Friday where I think I would be grumpy if I had to go to work six days a week, every week, you know, and I’d be the same guy I was that I didn’t like before the stroke. You know, what’s the point of that? I didn’t want to be that guy.
Deven Matthews 42:35
Right.
Bill Gasiamis 42:38
So what’s it like? When the kids kind of work out that you’re unwell and the young one, eight years old, probably a difficult conversation. 23 year old, probably different for another reason. How do you navigate all those conversations with the kids and so many different personalities?
Deven Matthews 43:01
Again, I had to give most of the credit to my wife, she’s amazing. She’s just an amazing woman. But yeah, the older kids were scared. The younger ones are scared for different reasons. And now they’re really adjusted, my physical therapist asked me how, like on my third bracelet with them, she said, How would your youngest one dealing with you having a stroke?
Deven Matthews 43:30
Matt said, I think he’s I mean, he’s eight, he just kind of accepts it either. So he’s afraid Daddy may die that he knows, I’ll die someday, you know. But um, he said in his experience as a physical therapist, when the stroke survivor has young kids looks, those kids gained a keen awareness of disabilities, and differences in people and acceptance. And that was like a best. It’s something I never ever would have thought of before.
Disability And Faith
Deven Matthews 44:03
And so now I try and watch my younger because I have now he’s 10 the second one. The second thing is is 15 I watch them and they’re just so they know I take a little extra time to get in the car. But no, I think he’s trying to you know, get out of the house or take a shower or whatever. But they’re just fine with it because it’s part of their life. And so hopefully that will extend it outside of the artist immediate circle.
Deven Matthews 44:32
Not other children wouldn’t feel that way. But with my younger two who are still at home in figuring out what to do to those who are at home now. They’re much more accepting of the disabled person. I think not many others aren’t but they exist. They’ve never done this yet, but it’s more about commonplace thing.
Bill Gasiamis 44:53
The less ignorant.
Deven Matthews 44:55
There we go. That’s perfect. Yes.
Bill Gasiamis 44:57
And we were more ignorant, and not through our fault, our own fault, like, it’s just the way it was, you never came across it and you didn’t know. And then I had to be in a wheelchair for an amount of time. And then I realized what life’s like being in a wheelchair. And even though it was a short amount of time, it gave me a very deep understanding of the difficulties that people face on a daily basis. And the need and my needs increased, you know, had more needs more, needs to have other people support me, help me, etc.
Bill Gasiamis 45:34
And I have often said this in the podcast, but it always sounds terrible when I say but I always just thought people in wheelchairs were just sitting down. You don’t connect the reason that they’re sitting down to anything, because I’ve never had that experience. So I never understood the emotional difficulties with being in a wheelchair, the mental difficulties with being in a wheelchair, the physical disabilities with being in a wheelchair, or the challenges that somebody in a wheelchair has to overcome, like, when somebody is able bodied. Everyone complains about our how hard things are, and all the challenges and all the problems and all the things.
Bill Gasiamis 46:23
And then somebody who’s in a wheelchair is already, you know, recovering from potentially a stroke or something like that. So they’ve got a lot to deal with because of the stroke. And now they have all this physical stuff that they’ve got to overcome. So not only have they been given this neurological condition, now they’ve got overcome with a neurological condition or the physical aspects of the challenge, right? So it’s like, completely out of balance, the amount of challenges that somebody
Bill Gasiamis 46:55
you know, with a with a stroke, who’s in a wheelchair has to overcome is so out of balance compared to people who are not in there. And it’s like, okay, now you can be Bill, you can be a little more empathetic, a little more patient a little more understanding, and lived experience makes the world of difference. And that’s kind of what your youngest have got. They’ve got a very amazing lesson, something that’s going to really make a positive impact to the way they navigate the world. It’s important.
Deven Matthews 47:36
Exactly.
Bill Gasiamis 47:44
How good would it be to learn all those lessons without somebody you love going through stroke, but sometimes it’s the only way to learn.
Deven Matthews 47:52
Right? Absolutely.
Bill Gasiamis 47:55
So remember those early days when you had the depressive symptoms and all those other challenges? How your self healing? Did you draw on your religious views, beliefs to help guide you with overcoming those challenges? How did the role that your church played in your life support in that space?
Speaker 1 48:28
Well, absolutely a huge, a huge portion. I mean, every day, a basic Christian belief in Jesus, the resurrection, the atonement, things that kept me moving, the promise of a Sunday, perfect body. Those beliefs really helped me move along. And regardless of what I’m facing in this life, as far as disabilities are inabilities is when they will be taken from me.
Speaker 1 49:00
On top of that, on top of the basic religious belief that is in my core, or the, the mental thoughts of a better existence now, okay, I can’t change that I had a stroke. I can’t change the verb awkward. The lender I talked about New York, I can’t put the piano. What can I do? Years ago, I used to listen to talk radio before podcasts before the internet, you know, and there is this silent psychiatrist psychologist who would tell a story that you might have heard before I might have heard even on the show about a boy who goes to his grandfather and his grandfather says, you know, son, how is your life? How is your relationship with your friends, your parents, how are you doing? Like, being good, the bad how how’s that going on?
Feeding The “Recovery Tiger” vs. The “Self-Pity Tiger”
Deven Matthews 49:55
And the boy looks with grandpa and said, it’s hard. I want to make good boy, a good Christian, if you will. But there’s another part of me that wants to be kind of bad. And sometimes I want to do the right thing and tell the truth and do both like grade school to admit, sometimes I’m lazy and wonder why this and that, and the little boy, he was just so you know, exasperated, he said, it’s like, there’s two tigers inside of me, and they’re fighting. And the good Tiger wins within some of the bad Tiger winds.
Deven Matthews 50:26
And he looked at his grandfather, and he said, Grandpa, which one is going to win. And the grandfather in his wisdom said, the tiger that wins is a tiger that you feed, whichever one you feed is going to win. And I love that story. It can be applied to so many things. And so once I had the stroke, and I was just thinking or meditating, the thought came in my head, I thought, okay, there’s two tigers inside of me right now, the recovery tiger that wants to get up and walk and not be in pain and just get over this thing.
Deven Matthews 51:00
And, then there is the self pity Tiger. And the one must lay in bed and cry and know, for me why this happened to me. And those are the two tigers that I think still today, two years, three months out, I’m still fighting. I think everybody fights those two tigers, it’s some way in their life, I’m just leaving it to stroke. So for your stroke survivors sort of listen or listening to this.
Deven Matthews 51:25
Think about that is a recovery, Tiger winning, or is your self pity, Tiger winning, because the one that’s gonna win is the one you feed. And so with my faith in God, and my religious beliefs, I can take that level the tigers, and fight knowing that what I do is going to make a difference in my recovery and in my mindset, and then I ability to move on with life. And yeah, there’s still sad days.
Deven Matthews 51:55
Yeah, there’s still sub periods. Yeah, there’s still as a thought, Why did I have a stroke? You know what, those other fat guys out there, they don’t have strokes and things like that. But in the end, how I see my Tigers is how I’m going to win. So when I get up, and I go for a walk, and I worked out for a half hour, and then I worked on the computer for school or read article, whatever it is, I’m fighting, I’m feeding the recovery Tiger. And that, I think, is the message that every stroke recovery person should consider feed the Tiger can recover, not the other one.
Bill Gasiamis 52:34
I love that. And the easy way to do that is the more time you spend feeding the recovery Tiger, reading a book listening to a podcast, understanding how to overcome your challenges, you know, rehabilitating yourself physically, emotionally, mentally, then there’s no space for the other Tiger. There just isn’t. And then the other one just kind of whittles away. And every once in a while it kind of tries to pop up and say hello. And it’s like, I heard what you had to say, I’m not interested in the rest of the conversation.
Deven Matthews 53:13
Exactly, exactly. I like what you said about educating yourself listening to podcasts, your podcasts when I listen to Iraq’s but even joining support groups. I have an online stroke support group that we meet every single week. And it’s just sometimes I go and I don’t say anything, I just kind of listen, sometimes I chime in, but it just gives you hope.
Deven Matthews 53:38
That there’s people out there that are going through a year going through and they can understand you. I have a very dear friend who is a he goes through he is a recovering alcoholic and drug addict and he attends Alcoholics Anonymous wins. And he compared his recovery to mine recovery. And he said I had an addiction. I had major problems. I had things I couldn’t overcome. Just like Deven, you have things you’re trying to overcome and you can’t, but you meet with these people who also have the same exact, I’ll say problems.
Deven Matthews 54:15
I don’t like that word, but the same exact situation that you have, just like he goes meet some of these people that have the same problems. He has again at Adisa word. And he says there’s just a great spirit of unity, where you can look at these people and say, okay, they did it, I can do it. Under they can do it that type of thing. And that beads that tiger again, like you said, pretty common.
Bill Gasiamis 54:40
Yeah, it’s community. There’s no point hanging around with the people who are not for recovery or not supporting recovery or not chasing recovery or not going after recovery. Because, you know, that’s they’re going to encourage you to go down that path of feeding the other tiger in the book, there’s a chapter about creating your right community building the right community, I call it a recovery community. And when I was researching that chapter, I found a book that was called connected.
Bill Gasiamis 55:15
And the book had amazing research done by two scientists. And we’re going to, I want to lower the book and I want to make sure that anyone who’s listening might be able to find that if they want connected the book, I’m just Googling it okay, is called Connected. And it was by two amazing scientists, I think there were psychologists or in that space. One of them is called Nicholas Christakis. And the other one is called James Fowler.
Bill Gasiamis 56:01
And what they discovered is that there’s this saying, you may have heard, you hear a lot in the personal development world, you’re the average of the five people that you are, spend the most time with. And it’s, it’s only part of the picture, what they have found is that you’re also the average of the five people that those five people spend the most time with. And then it goes one layer back, that those five people spend the most time with. So by the time you spend one week with the five people you spend the most of the time with, you’re actually being influenced by about 125 people.
Bill Gasiamis 56:52
And that’s really important to know, because if you’re a diabetic, who also has high blood pressure, and you continue to hang out, in places where people eat too much McDonald’s or drink too many sodas, and you’re trying to break the habit, it’s a lot harder to break the habit, because the community that you hang out with, could be amazing people could be fantastic company, but could be also making it a lot harder for you to break those habits. And then, with regards to the other parts of recovery, it’s the same thing.
Bill Gasiamis 57:33
If you’re hanging around people who are downers all the time, who are negative, who focus on problems, who complain who when to moan, then you’re more likely to be influenced in that way. And what they say is, you don’t need to cut people off and just forget they ever existed, what you need to do is just move, move your time, the time you allocate to another community where it’s more uplifting, supportive, encouraging, where they understand you where they’ve been through what you’ve been through, where they can shine the light.
Bill Gasiamis 58:08
And that’s what a support group does, right? That’s exactly what the stroke support group does. A group you never knew of you never hung out with you never attended, all you’ve done is shift a few hours a week, and you’ve just allocated into there, all of a sudden, now you’re speaking with one person, and that one person is influenced by a whole bunch of other people above them.
Bill Gasiamis 58:33
And they’re potentially all going through something similar or recovering. And you’re getting, you’re getting a quicker path to recovery, because now you’re being influenced by the people who are supportive of a recovery, so you can very easily shift the balance without a lot of energy toward recovery, just by changing the small component of time that you spend in this new space instead of the old space.
Bill Gasiamis 59:09
And churches are great for that, stroke forums, online communities are good for that. What I love about the church is faith, regardless of whether or not you’re very religious, whether you believe in Jesus, whether you believe in God and any of those things.
Bill Gasiamis 59:27
That word faith, I think, is a really important word. Because if you learn faith in a religious setting, to break it down just for the sake of conversation. Very basically what we’re being told is to believe in something that happened 2000 years ago, or the good of humanity, and also to believe in something that we can’t see God.
Bill Gasiamis 59:51
And there’s a whole bunch of learning and lessons that come with that, that if you do this, then you get that result. If you do that, you’ll get that result and it’s kind of like guiding light for how to get great outcomes in life. And I think without religion, I’m not sure if faith can be practiced so deeply, if you can practice faith without that foundational part of faith that religion kind of requests of you or asks of you or makes you go to.
Bill Gasiamis 1:00:24
And if you could take faith and develop your faith in your recovery, even if you can’t see it in the future, even if you don’t believe that will happen, even if you don’t know what the future holds, but you have faith that it could happen, and that it’s worth going after, then you might manifest it, like it might occur. It’s a good thing to put your faith in a potential, your own self, to be able to overcome all the challenges and be the kind of person that you want them to be, even if it’s hard, if you’ve never believed in yourself before might be a good time to start practicing faith.
Speaker 1 1:01:07
Right. And I think even little acts, along with the science, like doing what your physical therapist tells you is paid, because you don’t know the result, you can’t see that this is going to happen because this, you just trust Him. They had faith in her and they do what they say, you know, I was at physical therapy once. And my therapist was helping me on notice something. And there was another guy in the room working with his therapist, and he just shouted at her. I can’t stand up, you don’t know what it’s like you never had a stroke was like battling against her.
Deven Matthews 1:01:43
And I couldn’t understand that mindset. I was like, Dude, she is trying to help you do what she says. So, again, I don’t know if it was my faith that I have before the stroke, or what if a doctor tell me to do something, I get it because I thought, okay, they do this for a living, when school for this, they work with these people, they know if I do X, Y will be the result. And so I’m gonna do it. And so I still do that. I mean, I’m not fully recovering that hopefully one day, but I’m still doing X, Y, Z, because I hope that the results are what they want.
Bill Gasiamis 1:02:18
I love what you said about that it is it’s faith in other people. And it just reminded me of something that we do have, we do practice faith all the time, every time you jump in the car and go for a drive, you have faith that the other person is going to stay on this side of the white line.
Bill Gasiamis 1:02:40
And they’re going to stop at the red light. And they’re gonna give way when they need to give way. And I have to say that in my time of driving, I’m gifted this year, a very high percentage, and more than 99.999% of the time people have done exactly what I had faith in them that they would do, which is stay in the right side of the road and break when they needed to and stop at the stop sign and give me way.
The Hardest Thing About Diabetes And Stroke For Deven Matthews
Bill Gasiamis 1:03:12
So it is a fascinating thing we do practice it more often than we think. And when you get on public transport, you have faith that it’ll turn up that it’s going to take you to your destination. Okay. So there you go that’s a great way to think about it. I’m wondering, Devin, what was one of the hardest things about stroke for you?
Deven Matthews 1:03:37
Hardest? Losing my ability to play the piano for sure. I still will cry about that I will go to church now and hear the organ playing and just weep because I used to be able to do that. And I loved it. I mean, it was my passion. I loved playing the piano and playing the organ and I haven’t lost it. I still do it. But it’s just not quite the same one handed. There’s plenty of concertos and pieces out there for one handed piano, but it’s not the same. So by far, there’s been losing that ability.
Deven Matthews 1:04:15
Again, I just keep plowing because I can’t change that and I don’t want to sit in dark room and cry because that won’t solve anything. But I can do my exercises or fingers or my hands and maybe someday looking back. I’m hoping I see other stroke survivors were further ahead than I am to have full use of the hands and there’s even some things we’re looking into to assist medically and technologically and stuff like that. And I’m we’re doing all I can’t I want to do everything I can to get it back.
Bill Gasiamis 1:04:52
Yeah, I love the medical assistance is important to go after if you can manage it. We recently did an interview about That eternacept injection that is been widely discussed, especially for people living in the United States, which is a medication that gets used for reducing inflammation in people with rheumatoid arthritis. And what they found was that it improves some neurological conditions for some people, not for everybody.
Bill Gasiamis 1:05:23
And I did an episode probably about five or six episodes ago, where I interviewed somebody who flew from New Zealand to Florida to chat with Dr. Tobinick, to have the injection and had a positive result went from not being able to work to being able to work and teach again. And then there’s also some people that have had the injection and it hasn’t worked for.
Bill Gasiamis 1:05:48
But then I also interviewed a gentleman, Dr. Amir Hadanny, who does scientific research hyperbaric oxygen therapy, and some of the positive results that they received with that. Now, none of these procedures are cheap, none of them are cheap, but they’re worth knowing about what people in future in case, people who can’t manage it, fondant now might be able to manage it in the future.
Bill Gasiamis 1:06:19
So that’s really good. And then there’s also those robotic devices that you can invest in to put on your hand to help train it to open and close and develop new neural pathways and see if that can help. Are you able to talk about any of the things that you’re considering or thinking about?
Deven Matthews: FDA-Approved Neurostimulation Device For Stroke Recovery
Deven Matthews 1:06:44
Yes, well, I have a Bioness. For my leg, it shoots out electronic, maybe you’re familiar with Bioness. I have a stamp machine I use on my hands that same bundle using a machine. But I don’t know if you’ve heard much about Vivistim it is a device input, the inserts, I guess, better word are back on your collarbone, the opposite side of your affected side. And it connects to a nerve in your brain that operates your arm.
Deven Matthews 1:07:40
And then from what I read, there is very milk and remote control that a therapist uses to stimulate the arm and make it work. And the results are amazing. YouTube has tons of videos before and after. And so on going down to LA next month for a consultation to see if I can get that done that fight with my insurance company will then listen and pursue that to see who pays for it. But we’re going to look into that to see if it’s something that’s worth it.
Bill Gasiamis 1:08:19
That’s a great idea. What’s the procedure called?
Deven Matthews 1:08:22
I don’t know the procedure, but the name of the thing is Vivistim. The FDA has approved it. And they’ve had remarkable success with people who have seizures, or epilepsy and other reasons, other reasons for seizures, but they started applying it to stroke survivors. And again, success.
Bill Gasiamis 1:09:01
So here it is, it is a Vivistim is the first FDA approved neurostimulation device to pair VNS with your rehabilitation therapy and daily activities. The pairing helps strengthen the brain connections needed to improve hand and arm function. It’s the only system of its kind and it is proven safe and effective.
Bill Gasiamis 1:09:26
Okay, so that doesn’t tell me much, but I understand what it does. It’s one of those stimulation devices like you what’s similar in a way to the Bioness. That’s what the Bioness does, but for the leg. So yeah, excellent. Well, I think people will be interested to hear about that. So maybe they’ll get curious and start Googling it as well.
Lessons From The Diabetes And Stroke Stroke
Bill Gasiamis 1:09:59
What’s something that stroke has taught you?
Deven Matthews 1:10:06
I saw on your Instagram page, I saw this and I commented on it is that don’t believe your doctors. I’m telling you two things happened that were just devastated in the ER. The first was the doctor came in and said, Okay, you’ve had a stroke, you have six months, wherever you’re at six months, that’s where you’ll be the rest of your life. And it scared me to death.
Deven Matthews 1:10:31
Again, no experience with stroke, no family with stroke, nothing. So I didn’t know. So that was my first strike. Second was my brother came and saw me in the hospital. And he said, Hey, Devin, we know this lady, and she had a stroke. And four months later, she was back to normal, perfect. And that was take four months, okay into this for four months, and four months came environment, and then six months, and it’s false hopes.
Deven Matthews 1:10:59
And so the doctor that said, six months. And then on the opposite end of the scale, my brother that I said four months, we’re both very difficult lessons. For me. The lesson is, each stroke survivor has his own recovery, there’s no rubber stamp, there’s no normal, it’s all individual, because the brain is so individualized. And the damage that’s done, whether from a hemorrhagic or from ischemic is so individualized, so my own brain is recovering on my own time. And that six month garbage? No, I don’t know why doctor saying that. I don’t know why.
Bill Gasiamis 1:11:43
Yeah, I don’t know why either. Your brother was trying to do the right thing as well, wasn’t he? He was trying to encourage you and tell you.
Deven Matthews 1:11:53
Yes. He wasn’t being mean or anything. And history’s true stroke four months. She was fine. Great. Good for her.
Bill Gasiamis 1:12:04
Yep. What would you say to stroke survivors who are listening that might be going through their own struggles at the moment.
Deven Matthews 1:12:14
Again, don’t feed the pity party Tiger, feed their strong Tiger, be the tiger you want to win? Thank goodness, in my stroke support group. It’s on Zoom. So let’s see just the basis of all this people from all over the world actually. And some people are, they just look sad, because look, defeated, that look like they’re not going to win every comment or their mouth is negative. And I know it’s easy to feel that way. I know you’ve had a brain bleed, you now have a stroke in your mind just slips into that depression sometimes.
Deven Matthews 1:12:51
But my goodness, you got to keep positive and you’ve got to keep going. If my if I could go back to myself two years ago, what would I say to him, I’d say just play it, it gets better. It gets better, it gets better. And it doesn’t seem like it’s going to so that started to take any stroke survivor. At the rehab hospital, I actually was in for three weeks. They have a program where stroke survivors go and visit patients in the hospital that have had a stroke. And I’m in the process of signing up to do that and get it all the releases and everything. But that’s going to be my message is just wait it you two years from now can talk to you. They’ll tell you just hold on. If it gets better, it gets better.
Bill Gasiamis 1:13:41
Devon, thank you so much for reaching out to be on the podcast. Thank you for your comments on my Instagram page. I really appreciate you sharing your story. Best of luck with everything.
Deven Matthews 1:13:52
Thank you. Thank you and to you your book, everything, congratulations. This has been a pleasure. I enjoyed it.
Bill Gasiamis 1:13:58
Well thanks again for joining us on today’s episode, I do hope you picked up some useful bits of information from my chat with Deven. If you’re interested in my book about stroke recovery, you can grab a copy on Amazon by visiting recoveryafterstroke.com/book. To learn more about my guests including links to their social media and to download the full interview transcript head over to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:14:26
A huge thank you to everyone who has left a review it means the world to me. Reviews are crucial for podcasts to thrive and your feedback helps others find this valuable content making their stroke recovery journey a little easier. If you haven’t left a review, please consider leaving a five star rating and a few words about what the show means to you on iTunes or Spotify. If you’re watching on YouTube, leave a comment below, like the episode and subscribe to the show on your preferred platform to get notifications of future.
Bill Gasiamis 1:14:59
Besides, if you are a stroke survivor with a story to share, come and join me on the show. The interviews are not scripted, you do not have to plan for them. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Just visit recoveryafterstroke.com/contact fill out the form and I’ll get back to you with details about how we can connect via zoom. Thank you once again for being here. Listening participating. I truly appreciate you see you on the next episode.
Intro 1:15:39
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The 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 at 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 1:16:09
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 1:16:34
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, call000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:16:58
Medical information changes constantly. While we aim to provide current quality information in our content. We did 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 Diabetes, High Blood Pressure, and Stroke: Deven Matthews’ Road to Recovery appeared first on Recovery After Stroke.
1 hr 18 min