Recovery After Stroke

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July 17, 2023 Stroke And Brain Bleed | Kevin Gocke
Understanding the Differences Between Stroke and Brain Bleed
Every year, thousands of people around the world suffer from either a stroke or a brain bleed, and unfortunately, many of these individuals do not know the difference between the two. While both conditions affect the brain and can be life-threatening, they have distinct differences that are important to understand. A stroke occurs when blood flow to the brain is interrupted, either by a blockage or a burst blood vessel. On the other hand, a brain bleed, also known as a hemorrhage, is when blood leaks out of a blood vessel and into the surrounding brain tissue. Although both conditions can cause similar symptoms, such as sudden weakness or numbness, it is crucial to know the differences between the two in order to receive the proper treatment and care. In this article, we will delve deeper into the specifics of each condition, and provide helpful information on how to recognize and respond to both a stroke and a brain bleed.
What is a Stroke?
A stroke is a medical emergency that occurs when blood flow to the brain is interrupted. There are two main types of stroke: ischemic and hemorrhagic. Ischemic stroke is the most common type, accounting for nearly 87% of all strokes. It occurs when a blood clot or plaque buildup blocks blood flow to the brain. Hemorrhagic stroke, on the other hand, is less common, accounting for only 13% of all strokes. It occurs when a blood vessel in the brain ruptures and bleeds into the surrounding tissue.
Strokes can affect people of all ages, but they are more common in older adults. Other risk factors for stroke include high blood pressure, smoking, obesity, diabetes, high cholesterol, and a family history of stroke.
What is a Brain Bleed?
A brain bleed, also known as a hemorrhage, is a type of stroke that occurs when blood leaks out of a blood vessel and into the surrounding brain tissue. There are several types of brain bleeds, including subarachnoid hemorrhage, intracerebral hemorrhage, and epidural hemorrhage. Subarachnoid hemorrhage occurs when there is bleeding in the space between the brain and the skull. Intracerebral hemorrhage occurs when there is bleeding within the brain tissue. Epidural hemorrhage occurs when there is bleeding between the skull and the outer layer of the brain.
Brain bleeds can be caused by a variety of factors, including high blood pressure, trauma, aneurysms, arteriovenous malformations (AVMs), bleeding disorders, and certain medications.
Causes of Stroke
There are several risk factors that can increase the likelihood of having a stroke. The most common risk factors include high blood pressure, smoking, obesity, diabetes, high cholesterol, and a family history of stroke. Other factors that can increase the risk of stroke include age, gender, race, and certain medical conditions, such as atrial fibrillation and sickle cell anemia.
Causes of Brain Bleed
Brain bleeds can be caused by a variety of factors, including high blood pressure, trauma, aneurysms, arteriovenous malformations (AVMs), bleeding disorders, and certain medications. High blood pressure is the most common cause of brain bleeds, accounting for nearly 70% of all cases. Trauma, such as a head injury, can also cause a brain bleed.
Symptoms of Stroke
The symptoms of a stroke can vary depending on the type and severity of the stroke. The most common symptoms of a stroke include sudden weakness or numbness in the face, arm, or leg, especially on one side of the body. Other symptoms may include sudden confusion, trouble speaking or understanding speech, sudden trouble seeing in one or both eyes, sudden trouble walking, dizziness, loss of balance or coordination, and sudden severe headache with no known cause.
Symptoms of Brain Bleed
The symptoms of a brain bleed can vary depending on the location and severity of the bleed. The most common symptoms of a brain bleed include sudden severe headache, nausea, and vomiting, seizures, weakness or numbness in the face, arm, or leg, especially on one side of the body, changes in vision, speech, or hearing, and loss of consciousness.
Diagnosis of Stroke and Brain Bleed
Diagnosing a stroke or brain bleed involves a variety of tests and procedures. These may include a physical exam, blood tests, imaging tests such as a CT scan or MRI, and other tests such as an electrocardiogram (ECG) or echocardiogram.
Treatment Options for Stroke and Brain Bleed
The treatment options for stroke and brain bleeding depend on the type and severity of the condition. For ischemic stroke, treatment may involve medications such as blood thinners or clot-busting drugs, or procedures such as a thrombectomy or carotid endarterectomy. For hemorrhagic stroke and brain bleeds, treatment may involve surgery to repair the damaged blood vessel or remove the blood clot.
Preventing Stroke and Brain Bleed
Preventing a stroke or brain bleed involves maintaining a healthy lifestyle and managing any underlying medical conditions. This may include quitting smoking, maintaining a healthy weight, eating a healthy diet, getting regular exercise, managing stress, and controlling high blood pressure, high cholesterol, and diabetes.
Recovery and Rehabilitation
Recovery and rehabilitation after a stroke or brain bleed can be a long and challenging process. Depending on the severity of the condition, rehabilitation may involve physical therapy, occupational therapy, speech therapy, and other forms of therapy to help regain lost abilities.
Conclusion
In conclusion, understanding the differences between stroke and brain bleeding is crucial for receiving the proper treatment and care. While both conditions can be life-threatening and have similar symptoms, they have distinct differences that require different treatment approaches. If you or someone you know experiences any symptoms of a stroke or brain bleed, seek medical attention immediately. Remember, time is of the essence in treating these conditions, and early intervention can make all the difference in the outcome.
Podcast Episode 259
Kevin Gocke turned 21 in a coma after surgery to remove a blood clot from his brain, which damaged a blood vessel and resulted in a brain bleed as well.
Taken By Surprise: A Declaration of Perseverance
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Highlights:
02:21 The first symptoms
14:38 How the stroke and brain bleed affected Kevin’s creativity
23:23 Life after the stroke
27:53 Type of foods to avoid after a stroke
36:14 Creating the right environment for stroke recovery
47:05 Reclaiming life after a stroke
58:05 Kevin Gocke fell in love with his injury
1:05:54 What stroke taught Kevin Gocke
1:10:16 Plateaus are a myth
Transcript:
Kevin Gocke 0:00
And I realized that the whole time what I had been doing was sort of loving and nurturing my left side, you know, and I was starting to look back and I was started tracing back on accounts where I started resenting my deficits, and then getting maybe even a little emotional about it and angry.
Kevin Gocke 0:21
And it dawned on me that every time that I got out and dug myself out of those little plateaus, those little ruts are when I started pushing myself and forcing my left affected side to perform tasks that otherwise seemed impossible to me.
Kevin Gocke 0:37
So hanging from a pull-up bar and pulling up all my body weight and then jumping down the ground and doing push-ups and then going out body surfing, playing my piano. I picked up the harmonica you know, coupling the harmonica with a microphone. You know, I played a couple of live shows with my brother and was like, You know what I fell in love with my deficits. I fell in love with them on my left side.
Intro 1:03
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:16
Hello, and welcome to the recovery aftershock podcast. If you are a stroke survivor with a story to share about your experience. Come and join me on the show that interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or careful someone who is a stroke survivor, or you are one of the fabulous people that helped other stroke survivors.
Bill Gasiamis 1:38
Go to recoveryafterstroke.com/contact, and fill out the form. And as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over Zoom. Now in this episode 259 of the Recovery after Stroke podcast, I’m joined by Kevin Gocke, who experienced an ischemic stroke and a bleed due to complications in surgery. Recently, Kevin launched his book, Taken By Surprise A Declaration of Perseverance. Kevin Gocke, welcome to the podcast.
Kevin Gocke 2:14
Thank you, sir. Thanks for having me.
Bill Gasiamis 2:16
Pleasure. Thank you for being here. Tell me a little bit about what happened to you.
The first symptoms of Kevin Gocke

Kevin Gocke 2:21
Yeah, absolutely. So this happened back on October 21, 2009. Kind of interesting. So I was getting ready to go surf here in Southern California. And getting ready to go surf. Pretty big swell that day, with some good friends. And we went to pick up a friend that was going to come with us, he was working at a smoothie shop nearby.
Kevin Gocke 2:53
And I remember just looking at the menu, and the whole room just sort of started warping, my vision got really weird. That was my first signal. And I didn’t really know what was going on. However, I had a similar experience a few weeks prior, where we think it might have been a TIA of sorts, a few weeks prior because it was pretty much the same feeling.
Kevin Gocke 3:25
So my friend kind of looked at me and he goes, Man, are you all right? I think I’m alright. And I tried to brush it off. I said this happened to me and it went away. But I don’t know, it’s really weird, you know, and I went ahead and took a seat, a cup of water, I was really just trying to downplay it because I didn’t want to think it was anything serious, although it was certainly a bizarre sensation.
Kevin Gocke 3:51
And my vision started really affecting me on the left side and had a visual field cut that was occurring. And then when he put the cup of water in front of me, I went to reach for it and I’m left-handed normally. So I want to reach for it and missed a cup of water by about a foot. And so he knew something wasn’t right.
Kevin Gocke 4:16
So he called 911. And it just so happened that there was an ambulance in a nearby parking lot. Pick me up and took me to the hospital. And my whole life-size sort of slumped in the chair at that point and underwent a series of tests in the ER and the weird things that I was beginning to sort of improve.
Kevin Gocke 4:44
But there was definitely something up and then so upon further examination, they saw that there was a blockage in my brain and so this is where it gets a little interesting. They went in to retrieve what was believed to be a clot certainly something blocking blood flow in the occipital lobe, right hemisphere.
Kevin Gocke 5:06
And they went in to retrieve it with a tool. So they went up through my femoral vein. And unfortunately, when they went in the artery had ruptured. So it started as an ischemic stroke and then turned into hemorrhagic shortly after, and that sort of made the whole thing life-threatening, and how I ended up in a coma for nearly a month.
Kevin Gocke 5:32
And I definitely almost didn’t make it on the table that day, I know that. And then there were several accounts throughout the series of the next few weeks where my brain swelling was just so severe that they weren’t sure if I was gonna make it. Luckily, they didn’t have to quite cap me. I was close several times, but anyhow, fought for my life for the better part of a month, and when I woke up, I had this full upside paralysis and left side visual field cut and a fun trach scar and couldn’t speak.
Kevin Gocke 6:15
Sucked up to more tubes than I can even remember, but that’s sort of how it all happened. So I’ve spent the last 13 plus years I guess in October, it’ll be 14 years, October 21. Then, you know, spent the majority of my adulthood, pretty much all of my adulthood in the shoes of a stroke survivor. I’m 34 now.
Bill Gasiamis 6:42
You turned 21 while you were in a coma.
Kevin Gocke 6:45
That’s right. Yeah, I forgot I had to mention that too. So I turned 21 in a coma. I was pretty bummed about it. And you know, when I woke up, I didn’t really remember what had happened. I wasn’t really sure why I was there. I thought I had fallen skateboarding or something. And anyway, even though my vision was all crossed up, and was really hard for me to focus.
Kevin Gocke 7:13
They had a calendar up on the wall. And I saw that my birthday had gone by and birthdays November 8. I think it was like the 17th. And I go, I was mouthing the words because I couldn’t speak yet because of the trach. And they figured out I was trying to ask did my birthday goodbye. Like, did I miss it? And they’re like, yeah, it is the big one, you know, 21. And we’re all excited about I’m the youngest in my family. So we were all pumped about it. And unfortunately, I was taking a long nap.
Bill Gasiamis 7:53
Couldn’t even buy a beer legally.
Kevin Gocke 7:56
No, I couldn’t. Actually, it’s funny. Did you happen to get a copy of my book? I wrote about that a little bit.
Bill Gasiamis 8:04
I didn’t get a copy. I’ve been able to look into it. And I’ve done a little bit of research. We’re going to talk about your book because it sounds like a great story. But the link you sent me didn’t work. Exactly. But that’s okay. So you turned 21. And now you actually can’t drink a beer, even though you’re legally allowed to drink a beer.
Kevin Gocke 8:34
Oh, yeah. That was a bummer, you know, not a huge drinker or anything like that, but I definitely enjoy a cold beer, you know, especially 21. And I think everyone sort of looks forward to that. What is it in Australia? Is it 21 as well? Or is it 18?
Bill Gasiamis 8:57
18. Not that anyone waits for 18 of course, and not that we need an excuse to celebrate before then. We’ve definitely been on the beer way before 18. Most of us anyway, and then. Interesting. About the time you get to 21, it’s just a big event rather than a coming of age. The coming of age has already happened, you know? And then 21 is just a big excuse to have another massive.
Kevin Gocke 9:34
Yeah, just get everyone together. Yeah. But it’s fun you know, you get to pull out your ID get carded and it’s official.
Bill Gasiamis 9:43
The thing is, when we’re 18 we’re also allowed to get into pubs and clubs and venues of that sort of style where alcohol is served. So I’m not sure if that is something that you guys can do when you become 18. And what happens there? Are you able to attend venues where alcohol is served at 18? Or do you have to wait till you’re 21?
Kevin Gocke 10:13
You know, that’s a good question. I think if I recall the law on that, yeah, at least when I was 18, it might have even changed since then. But, you know, you can legally buy tobacco and, you know, stuff like that and enlist in the military. But that’s about it.
Kevin Gocke 10:33
And yeah, I think cuz I, you know, grew up playing shows, and before I was even 18, I was, you know, a member in a band and played live keys and stuff. Anyway, a lot of them were 21 and over bars, and they would just, you know, put an axe on my hand. And so I was basically tagged, you know, don’t serve this. This guy’s a minor.
Intro 10:58
Interesting. So my son was also playing in a band when he was probably 14. And all the guys we were playing with were older than him and legally allowed to drink they were all 18 or older. And they used to take him to gigs, but because they weren’t legal guardians, they couldn’t allow him to go into the show into the venue unless I was there or his mother was there. So my wife and I used to rock up at 14 till the age of 18 to watch them in their show because he wouldn’t be allowed entrance.
Kevin Gocke 11:42
So you had to kind of chauffeur him into the venue.
Bill Gasiamis 11:45
Yeah. So whether we liked the music or not, we had no choice but to hang out.
Kevin Gocke 11:53
What style of band was he in?
Bill Gasiamis 11:55
Hardcore, punk.
Kevin Gocke 11:57
Cool yeah, that’s my forte.
Bill Gasiamis 12:02
Not my forte. It’s a little hard to get used to but anyway, we did four years of it, which was more than enough.
Kevin Gocke 12:09
I know what you mean, it’s a hard pill to swallow for the parents. And you know, yeah, we got into a lot of European style heavy you know, speed thrash metal, death metal hardcore, all that. But, you know, I grew up on a lot of, you know, my Dad got me into classic rock, I grew up on Jimi Hendrix Led Zeppelin, you know, the all the classics, then it transcended into you know, Sex Pistols and a lot of punk rock.
Kevin Gocke 12:44
You know, strung out and all those good guys, so then it just kept progressing. Everyone got into the plane and they’re like, well, how nuts can we get with our instruments? You how fast can we you know, it’s fun. It’s a good time.
Bill Gasiamis 12:58
It’s a good way to let off some steam as well. It’s where I learned about the Ramones. I didn’t know who the Ramones were until my son introduced me to the Ramones. And that was pretty cool to hear the Ramones. And to get to understand the roots of punk rock. And how it emerged in the United States at
Kevin Gocke 13:22
Yeah, I need to learn. I obviously know about the Ramones and everything, but they’re one that sort of slipped through the cracks for me. I don’t know how but yeah, I know they’re pioneers in the world of punk.
Bill Gasiamis 13:38
Yeah. And Henry Rollins was another one of those guys who was pretty pioneering in the day and did a lot of great, sort of foundational work for the scene. And it’s great to hear that crazy. Punk Rock dude from the late 70s, early 80s. As an adult, I think he’s older than me now. And I talk about life now. And the way that he goes about life and how he’s really creative, and all that type of stuff.
Bill Gasiamis 14:11
And it’s interesting, even though it was hard to sit through four years of punk rock shows in the seedy clubs of Melbourne, and being the oldest people in the room. It’s still good. We learned to beat out of it, you know, I got some really awesome things out of it. And it’s also great to support my son at the shows.
Kevin Gocke 14:34
100% Oh, you’re a good dad for that.
How the stroke and brain bleed affected Kevin’s creativity

Bill Gasiamis 14:38
Tell me about how how the stroke and all that stuff affected that part of your life, that creative part of your life, and that part of your life where you got to be able to express yourself in that way.
Kevin Gocke 14:54
Yeah, so that’s, that’s a solid question. So I’ve been lucky I’ve gotten a lot of dexterity back, because you can tell I got really obsessive with my, with my recovery pretty early on. I think a lot of it was just sort of being naive, not really realizing it. I remember I actually remember I was talking to my who’s my speech? pathologist, he’s me.
Kevin Gocke 15:25
And she’s working with me mainly with my eyesight. And I was asking earlier, is this going to come back? And she’s like, we don’t really know. For some people, it does seem really doesn’t. As the physical stuff like, I should be good, what like six, six months? Sounds about right, you know, just completely over my head, I had no idea what I was dealing with.
Kevin Gocke 15:49
And I believe that, and I was kind of like, you know, I got this in the bag. I know this, how it affects everyone else, but not me. No way, you know. And that was my attitude going into it. And, you know, at the six-month mark, you know, being discharged from the hospital that obviously is discharged. But before that, being home, and I think that’s when it really sinks in is once you’re back in your element.
Kevin Gocke 16:17
And you start kind of attempting these things, and you sat at my piano for the first time. You started navigating your way through your home and you realize like, oh, yeah, this whole neurological damage. World is, is a little bit, I might have underestimated this a little bit.
Kevin Gocke 16:40
But having that said, I had a really I was fortunate with a really great support group. And I was able to kind of maintain that sort of, I don’t know if stubbornness is the word, but you notice, like, No, I think I can do it. You know, and I think in a lot of ways that helped me sort of push down some barriers that ordinarily maybe would have held me back.
Bill Gasiamis 17:05
Self-belief barriers, what type?
Kevin Gocke 17:08
Yeah, certainly. Excuse me. I’m trying to make sure this is all good. Yeah, so went through I just, it kind of, like, if there’s a will, there’s a way kind of thing I went through a series of not being able to do most things that I once, you know, took for granted. Things are really easy. And piano, guitar, things like that.
Kevin Gocke 17:39
So I sat at my piano quite a bit, you know, the tone was pretty bizarre, you know, arm wants to come up like this and hard to put your hand on the keys. So my brother and oldest brother come behind me and basically strapped my elbows in, like this. And then I forced my hands to, you know, I could do like octaves and things like that.
Kevin Gocke 18:01
But even that was pretty sloppy. So I got pretty proficient at playing one-handed. So to answer your question in and very long-winded way, I can still play piano fairly well, I just played mainly with my right hand, and I hit some bases, my left hand, you know, for therapy and for practice and things like that. I’m very at peace with where I’ve gotten to this point.
Intro 18:01
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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 19:01
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 19:21
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.
Kevin Gocke 19:40
But answer your question fully about you know what I did with my creative energy as I turn it a lot into a sort of my passion for working out and going on hikes and fitness and things like that even camping outdoors stuff. I still jumped in the ocean and body surf all the time. So that creative outlet that was once music I thought to be something, you know, potentially professional one day is now, you know, still a passion of mine.
Intro 20:21
Not what it used to be I get up and you know with body surfing is that because standing up surfing is a little sketchy?
Kevin Gocke 20:34
Yeah, you know, it’s funny. I was a big-time body surfer before. And then I was really into short boarding right at the time of my accident. And I’ve actually paddled around on my, shortboard, and feels pretty good. I’ve been meaning to get a bigger board. And I haven’t even attempted stand-up surfing, which is a shame for me.
Kevin Gocke 21:01
That’s actually on the agenda for this summer. Because I’m surprised I haven’t tried to get out. It’s like, it’s funny. I have my shortboard. So I’m six, three. It’s my short boards. Six, five. But it’s just it’s a little, it’s a little petite for me to paddle in the wave and try and stand up. It’s kind of intimidating. And then my other board is a 9 0, which is a lot of boards may be moving around.
Kevin Gocke 21:28
So I’ve been meaning to get something in the middle. Something that I could, you know, practice on maybe even like a foam board. But yeah, body surfing, I just really love it. And I can go out on days that, you know, it can be three feet, it can be head high. And I can still have a good time. You know, get a little barrel. Get exercise, actually, it’s great therapy, you know, swimming?
Bill Gasiamis 21:55
Yeah. And it’s interesting that you said that it’s because you can access the water more often than supposedly the surface because the surface needed this and swell otherwise. Yeah, it’s a little bit, sort of nothing happening and a bit boring.
Kevin Gocke 22:12
100% all I need is a pair of good fins. I love Vipers. And I’ll just put them on and catch anything.
Bill Gasiamis 22:20
That’s really interesting. I’m wondering now whether or not a lot of people who were surfing previously have had a stroke, whether or not they’ve kind of flipped and gone to bodyboarding. Because that’d be a great way to continue to get in the water without worrying about getting on your feet too much falling over all the time.
Kevin Gocke 22:42
Yeah, bodyboarding is cool, too. I’ve tried bodyboarding bodyboarding works pretty well. The one thing that weirds me out about, you know, with bodyboarding is I took off on a wave and I got a little I think, I guess cocky.
Kevin Gocke 23:01
And I wasn’t paying attention to where my left arm placement was. And I you know, and I went over the fall that kind of impacted my shoulder and really strained all the tendons. You know, it wasn’t quite prepared for that. Because I’m sure you could work your way into it where, you know, the shoulder wouldn’t be susceptible to injury or anything like that.
Life after the Stroke and Brain Bleed

Bill Gasiamis 23:23
Yeah. So how did you transition out of the stroke? What was getting back to normal life like back then? Did you end up going to college? Did you go to work? How did all of that play out?
Kevin Gocke 23:42
That’s a great question. So I was so determined to go to a music school that, you know, going back to traditional school didn’t really seem all that appealing. I wasn’t the greatest student actually. Okay, I completed two years in community college. And then I was transferring over to music school, right when everything happened.
Kevin Gocke 24:10
So I did actually go back, I attempted it. And I just didn’t really know what I wanted to do. And subsequently, during that process, I had sort of been invited into the real estate world by a family friend. And I just kind of, you know, was shadowing him on, you know what he was doing and it was mainly more development projects and things like that, but I became good friends with the realtor and the broker on the deal.
Kevin Gocke 24:47
And it impressed me I’m like, Okay, how hard is this to do and it’s like something I could do. You know, it’s not very physically demanding. actually went back to the restaurant. industry first just to you know, kind of make ends meet a little bit, get a little bit of money in my pocket. But you know, I was 21 years old and you know, luckily for me, I was living with my folks.
Kevin Gocke 25:10
So I wasn’t freaking out about bills per se, you know, so I had the freedom to go to real estate school and got my license. And then yeah, it’s been a great profession, I actually still do it to this day. But the biggest thing for me was just getting everything back. And, you know, kind of reclaiming everything that I lost, which is it’s a tall order. But I just continued to experiment with new things I was taking. I was actually, I’m not sure if you’re familiar with Lion’s Mane mushrooms.
Bill Gasiamis 25:55
I am yeah. Tell me about it. A lot of people listening won’t be familiar with them.
Kevin Gocke 25:59
Sure, yeah. Well, it’s interesting. It’s something that was brought to my attention way early on by a neurologist, just, you know, I think there are some doctors that maybe think it’s whatever, you know, there’s some very strong evidence pointing to some of these mushroom compounds, Lion’s Mane is one of them, Rishi, quadriceps Chaga are just incredible for the body and Lion’s Mane, in particular with the rerouting of neuro pathways.
Kevin Gocke 26:36
So that’s something that I started experimenting with early on, and it kind of opened my eyes to the whole natural supplement world. And, you know, just that kind of grew up into like, oh, what’s over here with nutrition, you know.
Kevin Gocke 26:52
What’s odd about it, is that I didn’t really have other than, you know, my brothers and my family and that’s it, I didn’t really have anyone guiding me in the right direction with how I should be eating, how I should possibly be supplementing, you know, and how I should be moving my body, I mean, outside of basic, you know, routine therapy, which is important.
Kevin Gocke 27:22
But where I started to really, you know, find myself, you know, really breaking through certain plateaus, as they say, was really pushing myself outside of my comfort zone. And also feeding my body with things that I knew it needed. So for me, a diet rich in protein is extremely important. And with all the muscle atrophy, yeah.
Type of foods to avoid after a Stroke and Brain Bleed
Kevin Gocke 27:53
Okay, so what are muscles need, they need protein, you know, in order for protein synthesis to occur, you need X amount, depending on the individual, obviously, but then I started playing around with essential amino acids, things like that. Glutamine really, really focused on hydration and blood health, you know, I really got into you know, I take fish oils every day. Things I just think that ultimately really helped push me and I mean, I still feel like I’m getting better. And it’s almost 14 years, you know, how about you?
Bill Gasiamis 28:31
Yeah, look, I’m similar. I went down the path of just trying to take out of the diet, things that are inflammatory in nature, figuring that my brain was already inflamed, and then what I didn’t want to do was contribute to the inflammation and make it worse. So for me, it was very focused on a large sort of amount of protein diet.
Bill Gasiamis 28:57
As best quality as I could possibly afford and get and then decreased my consumption of alcohol, dairy, particularly cow dairy, dairy from cows, and then decreased my consumption of carbs including flour, any gluten-based product, whether it’s pasta, bread, any of that stuff, and still to this day I’m the same and then of course, alcohol, stopped drinking alcohol, didn’t drink alcohol for the first five years and maybe had maybe in the last 10 years, maybe I’ve had 10 glasses of alcohol all up.
Bill Gasiamis 29:55
And so it was dairy and gluten, I stopped drinking caffeine for a little while. Because the main way I drank caffeine was with milk at the cafe, that was kind of introducing dairy. And then, therefore, if I wanted to avoid dairy, I just inadvertently avoided caffeine. So I went, on this particular diet for a very long time and did amazingly well increased, the sharpness in my mind decrease the fatigue that stroke causes lost weight, became more energized, and just had a massive, positive response to taking things out.
Bill Gasiamis 30:47
And sugar was a huge one, specifically sugar taken sugar out of my diet. Before the strokes, I used to drink. Coke was my big go-to. And just thinking that you know, one can a day or two cans a day was being so active, wasn’t really impacting me in a negative way. But then when I stopped drinking it, especially after the stroke, my god the difference in my ability to think clearly, and to have less deficit, awareness.
Bill Gasiamis 31:20
The ability for me to improve the way that I was rehabilitating my leg and my arm after brain surgery. Imagine everything was just better. So I took a big journey down that path. I’ve heard about Lion’s Mane, but I haven’t really taken Lion’s Mane. But when I read online about what it’s meant to do it, it’s amazing. I mean, they are to support according to an article from healthline.com. They protect against dementia as they could protect against dementia.
Bill Gasiamis 32:00
They may help relieve symptoms of depression and anxiety. They may spit, and they may speed up recovery from nervous system injuries that may protect against ulcers in the digestive tract. In the digestive tract, they support the reduction of heart disease. They help manage diabetes symptoms, they may help fight cancer.
Bill Gasiamis 32:32
Okay, let’s be claimed, they reduce inflammation and oxidative stress. And if anything that I’ve listed is important. It’s reducing inflammation and oxidative stress. If you’re reducing inflammation, you’re supporting a positive decrease in the risk of all those things that I just mentioned, dementia, cancer, all those things all improve as heart disease, all those things improve if you can reduce inflammation and oxidative stress.
Bill Gasiamis 33:04
And they boost the immune system and really, the list goes on, depending on the article that you’re reading, and watching. And they’re pretty easy to obtain Lion’s Mane mushrooms, and they support neurological growth in new neural pathways, and that’s pretty amazing and cool, which is exactly what stroke survivors need to do. They need to find new neural pathways to replace the ones that were interfered with or lost.
Kevin Gocke 33:33
Exactly. But that’s what was so appealing to me about it at the time. And, you know, there’s a lot of buzz about it. Now, you know, I can’t claim that I’ve been, you know, consuming Lion’s Mane every day for the last 13-plus years. However, I did start about 13 years ago, and just always been mindful of it. And I’ve got it in my system as much as possible.
Kevin Gocke 34:01
And as of the last several years, five years, I’ve taken it every day, every day and there’s so many like you said it’s not very hard to obtain. You can get it at local health food stores wherever online. Yeah, all those things. It’s so key and it’s now starting, I feel like comes up more and more so now. And I’m involved in I just wrapped up a research study with a local university here UCI Medical here in Orange County.
Kevin Gocke 34:34
And you know, they asked them I say, you know, do you guys have any protocol or do you need research studies regarding certain supplements that are absolutely known to help speed up recovery because the exercises and everything are extremely important? Absolutely. But you know, what you’re consuming? And what’s going on internally is extremely important as well. I’m not sure which one is probably it is a little bit more important. I’d say obviously, you got to move.
Intro 35:15
Yeah, well, if people can’t move, because of the stroke, then what you consume is the next thing, right is the thing that becomes the most important. And I suppose for me, it’s what you don’t consume. That becomes the most important what you take out of the diet. That’s the approach that I took. It’s like, What are the five worst things that I could do to my body?
Bill Gasiamis 35:41
Okay, well, smoke was one, but I stopped smoking pretty much that they of the first bleed. So that was tip number one. So what’s the worst thing you could do? You could drink alcohol, you could smoke, you could take drugs. And you could eat the wrong foods. And then you can have a bad mindset, you can have a negative mindset.
Kevin Gocke 36:10
And typically all those things lead you to a negative mindset.
Creating the right environment for stroke recovery
Bill Gasiamis 36:15
They support it, they create negative energy. Yeah, so my idea was, what I’m going to do is create the right environment for recovery. And that’s how I did it, as some people don’t realize, but what I didn’t realize before my strokes is I created the right environment for a stroke to actually occur. Now, it was a blood vessel that I was born with.
Bill Gasiamis 36:39
It was a bleed that occurred as a result of a faulty blood vessel. But I did nothing to stop that blood vessel from bleeding. I supported it, I gave it everything it needed to play up and to bleed. And for 37 years, it did nothing in my head. But then at some point, the conditions were right for it to respond in a negative way.
Bill Gasiamis 37:01
That is the way I say it now, somebody else might say differently, and that’s fine. So then, I just took the opposite approach. Okay, what can I do now to create the right environment for my brain to heal? And that simple question led me to 1000 things that I could do.
Bill Gasiamis 37:20
Some were impossible for me to follow up and actually implement. Others were really easy. And the ones that were really easy for me were what I was putting in my mouth. Because it started at the supermarket. It started with what I put in my basket, if I didn’t put the stuff in the basket, it didn’t come home. I didn’t consume it was really simple.
Kevin Gocke 37:42
Sure. Yeah. No, that’s 100% You’re right on the money there. And it’s funny, because, you know, these are practices that, you know, sounds like you and I both had been implementing for a long time. How long ago was, your stroke?
Bill Gasiamis 38:01
That was in February 2012 the first time and
Kevin Gocke 38:05
Okay, so yeah, just three years after mine. So yeah, you know, it’s been a, you know, better part of a decade over a decade, right? Yeah.
Bill Gasiamis 38:15
Yeah, it has been. And what’s cool about it is what you said is those studies are starting to now become available and proof in things that I was doing that was considered weird or strange or unnecessary by my doctors or nutritionists, or whoever I spoke to. It was the early days. I mean, it was only 10 years ago, but it was so long ago because there was no information available on that type of approach.
Kevin Gocke 38:45
Yeah, you had to really like to sift through the mud to find any kind, and then when you bring it up, yeah, to your doctor. And I mean, I remember one of my neurologists and I went through a few but you know, he just thumbed his nose at it and said it was quackery. And then, you know, you know, my rehab doctor, we have had a kind of fun back and forth about it.
Kevin Gocke 39:14
And he was actually supportive of it. But he said he wants to stop I didn’t learn in med school kind of thing. And, you know, I get into debates with you know, other friends, and actually, I’m working right now with a local community college at the adaptive kinesiology program. So I’m helping train people and helping them get fit again, that’s my kind of My forte is, you know, building back not out of vanity, but it does help to feel fit.
Kevin Gocke 39:46
Not only do you function better, but especially for me now. You know, I had a girlfriend that had left me when everything happened and you know, as a 21-year-old kid, and we’re kind of like, oh, great, you know? feel defeated, you know, disabled all these things, these things that can’t I cannot control? You know, and I’ve written about it, you know, what are the things that I can control? What are the things I am capable of?
Kevin Gocke 40:14
Like you said, it’s kind of like, what are the things I can remove from my diet that I know that are going to help me? Okay? Same thing with your mind. And with your actions the were the negative actions and thoughts I can remove from my day to day. And all of a sudden, it just led me to this world of, well, I eat better, I feel better, I move my body, I feel better, I look better, I move better, you know, all these things started sort of like a domino effect. And then felt confident enough to go on a date again, you know, and the rest is history.
Bill Gasiamis 40:53
A good amount of vanity, I think is an amazing tool. I mean, I have to be honest, I’m vain. And not that I need to look like I did when I was 21. Wanting to, you know, have the same tone or whatever. But I do need to look in the mirror and like what I see in myself. And that’s part of what motivates me, and when I follow my vanity, I allow myself to give it what it wants, which is a certain outcome.
Bill Gasiamis 41:28
I do notice that then I’m lighter on my feet, which means I’ve better in my balance, which means I get less tired, which means I can go longer and further. You know, that means I can be more productive. Everything does improve. And, its vanity is not the key driver. But it’s a really important part of the process.
Bill Gasiamis 41:51
Because if I was just doing it because I needed to be healthy and have a great brain, it wouldn’t be enough for me personally, just to be healthy and have enough brain power. And all that kind of stuff is a really big motivator. But it’s just lacking one little bit of extra motivation. And that for me, I think is vanity. And I don’t think I’ve ever been vain to the extent where I’m. So I think with vanity, in the right dose, and for the right reason. I think it’s perfectly fine. And I don’t mind it one bit.
Kevin Gocke 42:44
Yeah, you know, what’s interesting about what you said, and it just dawned on me, and you’re absolutely right, there’s no I never thought of it that way. But there is maybe a healthy amount of it. Because when you think about it, yeah, as you said, if you’re looking at your reflection in the mirror, and you’re, especially for us, you know, stroke survivors, I’m constantly looking for imbalance and things like that.
Kevin Gocke 43:10
So you kind of become accustomed to you know, not judging yourself but evaluating and being an observer of like, okay, this, my shoulders dropping, or I’ve still some atrophy in my left, you know, pectoral muscle, how do I even that out, but you’re, you’re evaluating your own physique for balance because it’s ultimately going to affect how you move around.
Kevin Gocke 43:35
And a lot of times, most of the time, you know, the outer part is, is a reflection of what’s going on on the inside. So if you have an excess of adipose tissue, aka fat around your midsection, that’s usually an indication of inflammation in the gut, and, you know.
Bill Gasiamis 43:59
And it throws your center of balance out.
Kevin Gocke 44:02
It’s totally does you carry around extra weight, there’s more blood pressure, there’s, you know, there’s all kinds of issues that come along with that. So it’s unfortunate that sometimes I think, you know, people, fitness enthusiasts or people who have become obsessive about their health and working out Nutrition has gotten some sort of bad rap when in reality, it’s like, okay, take the overly judgmental vanity aspect out of it. You’re taking care of your temple and vehicle that moves us around, and it is a direct display of what’s happening internally.
Bill Gasiamis 44:43
Yeah, and it’s actually not about fat shaming, or it’s not about making people feel bad or anything like that. I’ve been heavier and that was a phase that I was in and that was a stage that I was in and you know, I didn’t feel terrible about myself, but I just didn’t feel efficient, I didn’t feel able to operate at the right kind of level that I needed to operate at.
Bill Gasiamis 45:10
So I did something about it, it was simply that and I didn’t particularly enjoy having to go buy clothes that didn’t replace the ones that didn’t fit anymore. And I felt like I didn’t want to outsource that onto somebody else and make it somebody else’s responsibility to make me feel good about myself, I’ll do that myself, I’ll find a way to solve my own problem and feel good about myself, like, I’ll lead the charge.
Bill Gasiamis 45:39
And I’ll take responsibility for that as well. And that’s really what it was about. For me, it was purely just me. Knowing that I did it, I couldn’t be as slack as I was in the past, because I have a deficit. And I can’t live with the deficit, impact with how the deficit impacts my life. Because that means I’m not achieving all the things in my life that I want to achieve.
Bill Gasiamis 46:09
I mean, I want to be able to do podcasts, the way that I’m doing them, I wouldn’t be able to be present. I wouldn’t be able to edit them and get them live and do one episode a week for the last two or three years. You know, there’s a lot of things that I’d be missing out on it. This stuff gives me joy and happiness. To create the right foundation so joy and happiness emerge.
Kevin Gocke 46:31
Yeah, no, I love it. And that’s what you have to do. I mean, you’re, you know, like what you’ve been doing, you’re doing a great thing with this. I’m glad I found you on Spotify, actually. And yeah, you know, it’s important to have guys like us sit down and have a discussion because being proactive, especially for you know, as long as we have it’s basically been our own guinea pigs in terms of experimenting.
Reclaiming life after a stroke
Kevin Gocke 47:06
I feel like a lab rat all the time with what works. What doesn’t work? I’ve experimented with diet, I even went vegan for a while. And yeah, it wasn’t for me, I got really thin real quick. But you know, no offense to those out there that work for them. My biggest thing is, especially when it comes down to, you know, reclaiming your life post-trauma is you tend to figure out what works for you pretty quickly, you know, because what works for me what works for you might not work quite as well, for the next person.
Kevin Gocke 47:48
It probably will. You know, I mean, I think there’s there’s sort of a general template or a framework that it’s like, here’s the general guideline on how to push your body, how to maybe eat how to how to experiment with your recovery, but make it your own. You know, you can always fine-tune it. It’s kind of like, you know because I get an old vintage car or something. It’s like, here it is if you want to soup the soup it up, make it your payment for the car you want.
Bill Gasiamis 48:22
I agree. And that’s why I have a disclaimer, at the end of the podcast, it says don’t take anything I say, as gospel, do your own research, get your own advice, and speak to professionals. Absolutely. But what’s good is to express a different approach, which might be different to somebody else, just to make them think about that.
Bill Gasiamis 48:44
And of course, that’s how I came to be me. And to take the path in recovery that I did, I listened to other people’s versions of their own recoveries in other podcasts about other things. And I created, I picked a little bit from that guy a little bit from that person a little bit from that person. And I created this little version of it, that was my own. And, yeah, it works for me. And sometimes it doesn’t work for me.
Bill Gasiamis 49:09
And sometimes I need to make a change and learn more about a particular thing and understand it better, and then implement a different thing, and then just try it and see what happens. Overall, I’ve learned a lot, and I’m better for it, then that’s probably one of the key things about it. What’s cool is that I have a lot of ideas, right? And then I’ve decided one day, I need to express them in a way that’s more succinct.
Bill Gasiamis 49:36
So I put it in a book, and I’m finishing my book, and I’m writing a book. And when I think about me, and the book that I’m going to be launching in a couple of months, I never believed I Always pinch myself and think back to the guy 10 or 11 years ago and think, oh my god, that guy never wrote a book.
Bill Gasiamis 49:57
He never was a book guy he never researched anything you never wanted to share anything, never wanted to express anything? How did you get to write a book and get to the point of publishing it? One of the hardest things I’ve ever had to do. What made you take that journey? And by the way, for people listening and watching the books called, take them by surprise, a declaration of perseverance.
Kevin Gocke 50:30
That’s it. Yeah, you know what, actually, I That’s why I scooted back over here is not sure if you’re able to find it. So basically, everything that I wrote about here, is what pushed me to write it. So I’d actually think in 2015, I had gotten pretty serious about it, and drafted up an outline, and kind of had some bullet points.
Kevin Gocke 51:08
And, gosh, 2015, so that was, what, eight years ago 26 I’d had some experience, but I also still felt like a kid and what halted me and why it sat on the back burner for the last eight years, as I was like, I don’t know. Again, I love the fact that people, you know, write books about their trauma and their experience, but at the time, in 2015, I felt like I didn’t really have a whole lot to contribute.
Kevin Gocke 51:39
I had a relatively impressive recovery at that point, given the level of brain trauma the scans have shown, right? But it’s kind of like, well, this happened to me, I can write in-depth about my, my experience, but what I wanted to do with my book was show how, you know, not just this crazy thing happened to me this stroke happened to a young 20-year-old kid who was seemingly fine and totally healthy and almost took his life.
Kevin Gocke 52:17
But how I put the broken pieces of the puzzle back together again, was an important aspect of the book that I just didn’t quite have figured out. And, you know, a lot of things that kind of transpired, you know, 2020 with the whole lockdown, COVID and everything, and I was busy with real estate, and you know, work has been good to me, and that department.
Kevin Gocke 52:44
But I started just kind of questioning, my purpose a little bit. And am I in that’s fine. It was my purpose to do this. I mean, I live in a beautiful area. And, you know, I met my, my girlfriend at the time is now wife, we just got married in October. And just a lot of things sort of transpired. I’m kind of like, you know, things started thinking a lot about my future. No, and I kept bumping into other stroke survivors at the gym, for instance.
Kevin Gocke 53:18
And, you know, I’d walk up and I’ve made friends with the two of them. There are only about two people in the gym. And younger guys and I thought they were my age. Turns out they’re a little older and about 40 But they’d had theirs you know, back in their 30s. And, you know, like, Hey, man, if I show you something, they you know, kind of taken aback at first, and then my guide went to the same thing. Kind of like whoa, really? I’m like, Yeah, it did.
Kevin Gocke 53:51
But I can show you you know, what I did to help me get to where I’m at now if you if you don’t mind I can show you how to maybe get some resistance on that arm without you know, cuz what I noticed for this one particular gentleman is he was just working out is not affected side. And it just was driving me crazy.
Kevin Gocke 54:16
You know, there’s a way to do it, and it’s gonna be uncomfortable, and it’s probably gonna hurt but I showed him I said, we’re gonna go like, there’s no ego here. Put a five-pound weight not even I think it was like a two-pound weight. You know, I just said, just start working on it. And he’s thanked me since. And that’s kind of what drove me to get involved with this nice, adaptive kinesiology program. So anyway, I’m sorry, I kind of went off tangent.
Kevin Gocke 54:44
My point is, well, these things kept happening. And I felt like they were the signs and I get invited to do another research study. I’m like, I keep getting pulled back into this world of stroke recovery. And you know, plenty of people have said, Oh, you you know at that I ought to write a book and things like this. And it’s such a rare scenario. And my recovery has been what it’s been just pretty good, I guess.
Kevin Gocke 55:14
So I finally put it into paper, and I redid my outline, I trashed the old one, because a lot of transpired since then, and I have a lot more to say, a lot more life experience. So he kind of turned into somewhat of a blueprint, as I called it, and it’s kind of like, this is my blueprint.
Kevin Gocke 55:37
You know, I hope it serves you well if you follow along, that’s the cool thing about it is I think that if, if you take, you know the words in there for what it’s worth, it’s, these are the mistakes I made. These are the things that really served me poorly. And then here’s a lot of the things that served me well. And it goes everything from, you know, lifestyle choices to mindset everything in between.
Bill Gasiamis 56:10
So what I was missing when I was going through this was that book, right, because I was looking for a blueprint from other people who weren’t stroke survivors. And it was the best I could do. And it worked. It still worked. But it kind of always didn’t feel quite the blueprint for me, even though there was a lot of amazing information there.
Bill Gasiamis 56:33
And then what I found was, I had my own, I created my own blueprint. And like your book, mine has taken two years to develop, and two years to write. And it wasn’t writing for two years solid, it’s always it’s my stroke journey, my brain wouldn’t allow me to write for a lot, lots of time, like a good chunk of time, sometimes two months, six weeks, whatever.
Bill Gasiamis 57:04
So I just didn’t write I couldn’t. But when. But when the idea came up, the idea came up at around 2015, I started to get feedback from people that they thought that stroke was the best thing that happened to them. And I thought the stroke was the best thing that happened to me. And then I was like, Okay, how did we get there? I wonder if there are any similarities in how we got there. And there turns out that there was, and that’s kind of what the book is right becomes a blueprint.
Bill Gasiamis 57:38
What a book, your book, same thing, it’s a blueprint. If I had it earlier, I would have felt less alone in my recovery journey, especially in the early days thinking that I didn’t know anyone that has been through something like this, or nobody understood me, or what happens next phase, you’ve got a real good grasp of that.
Kevin Gocke fell in love with his injury
Bill Gasiamis 58:05
And you’ve simply put it into beautiful, seven chapters, that are about 130 pages long. And when I’m reading through the chapters, the one that stands out to me the most, the one that kind of made me take a second look was falling in love with your injury. Now, that’s an interesting concept. Explain to me what that is all about. Because most people dislike their deficits and their injuries. And it really bugs the heck out of him. Right. So how do you fall in love with your injury?
Kevin Gocke 58:44
So that’s a great question. So just to step back just a little bit, it’s funny, that you say, takes me about two years to finish your book. I got really serious about it, you know, after COVID around 2021, I was like, Okay, I need to I need to finally do this thing. And I started jotting down all my weird manifestos, my crazy thoughts, and, you know, as I started jotting down and really putting, I keep saying this ink to paper, but it’s important, I think writing is extremely important.
Kevin Gocke 59:24
It was extra annoying for me because I’m normally left-handed. So that’s one of the things you know, I can do 30 Pull-ups, but I still can’t pick up a pen the dexterity is a little off. So I’ve just learned to write with my right hand. So anyway, I’m writing this outline with my right hand and you know, I kind of had a moment where I was a little pitstops He’s meant with my fresher little upset rather with my left hand and is like writing all this stuff.
Kevin Gocke 59:59
I wasn’t really upset with my left hand was just kind of frustrated. And I started thinking about how far I’ve come and actually what I’ve been able to retrain my left hand, my left arm, and a whole left side to do what I’ve been able to accomplish, since my stroke, brain injury, and everything.
Kevin Gocke 1:00:23
And I realized that the whole time what I had been doing was sort of loving and nurturing my left side, you know, and I was starting to look back and I was started tracing back on accounts where I started resenting my deficits, you know, and getting, you know, maybe even a little emotional about it and angry.
Kevin Gocke 1:00:48
And it dawned on me that every time that I got out and dug myself out of those little plateaus as little ruts is when I started pushing myself and forcing my left affected side to perform tasks that otherwise seemed impossible to me. So hanging from a pull-up bar and pulling up all my own bodyweight and then jumping down the ground and doing push-ups and then going out body surfing, playing my piano, I picked up the harmonica, you know, cutting on the Monica with a microphone.
Kevin Gocke 1:01:28
And, you know, I played a couple of live shows with my brother and kind of was like, you know, what, I fell in love with my deficits, I fell in love with my left side, I mean, cuz. And the concept is when you truly fall in love with your injury. And you feed it everything that it needs, the positivity, the light, the love, and the strength and the courage to break through these seemingly impossible barriers.
Kevin Gocke 1:01:59
That’s the only way literally the only way you can progress, you know, through if, if you don’t truly fall in love with your injury, and you don’t own it and show it the respect that it deserves. It’s kind of like a relationship. You know, like, I think you probably wrote a book or read about that. Whether it be professional or intimate, or whatever, a friendship.
Kevin Gocke 1:02:27
If you start trashing that relationship and feeding it, you know, negativity and hate anything but respect and love and encouragement, then it falls apart. You know, it’s not built for longevity, it’s not going to serve anything or anyone very well. So anyway, that was one response.
Bill Gasiamis 1:02:54
It’s a beautiful response. It’s just awesome. It’s a concept that people are going to find maybe strange, some people and it’ll make them think, and that’s it, if it makes them think, and they can maybe find the silver lining, then I think that’s cool. That’s hopefully what happens, they find a silver lining, and then they think about things differently.
Bill Gasiamis 1:03:16
And if they think about that differently, then they might think about something else differently. And then that might change the whole world. And it’s a little seed. And I think that’s where it starts. It starts with having weird, strange ways to look at an injury and uncommon ways, and I think, I think that’s awesome to describe that to somebody who might be, let’s face it struggling with the deficits. And that’s okay.
Kevin Gocke 1:03:46
Yeah, I appreciate you picking up on that. That was actually one of my favorite sections in the book and something that yeah, I’m glad you picked up on that. That’s, that’s cool. What’s your favorite part so far?
Bill Gasiamis 1:04:01
It is, I’m definitely planning on getting a copy and reading it through. I think there’s a lot to learn from it. And as I said, these books are the books that I needed when I was recovering. I’m planning on compiling a list of books written by stroke survivors, for stroke survivors and putting it on my website so that I can easily send it to people and go hey, here are the books from stroke survivors for stroke survivors.
Bill Gasiamis 1:04:28
These are the people that I’ve interviewed. And then hopefully that makes a massive difference to people that are early on in their journey like we were and we’re in desperate need of content and ideas and new ways to look at things.
Kevin Gocke 1:04:51
I was just gonna say to back up what you’re saying there, and my thanks to you was what you’re doing here. Same with, you know, with regards to the book, like what you’re saying you wish you’d had something like that back then that’s something I’d mentioned in there is, you know, with all humility.
Kevin Gocke 1:05:15
I wish I had a tool like that in my darkest hour and someone to relate to or, you know, I’m not alone. Oh, here’s how this person did it. And maybe this will work for me, it worked for me. So yeah. I appreciate that. Thank you. And this is great too what you’re doing.
Bill Gasiamis 1:05:37
Yeah, my pleasure. As we wrap up, I just want to ask a couple of questions, to leave some wisdom to the people listening. Not that we already haven’t we definitely have. But what has stroke taught you?
What stroke taught Kevin Gocke

Kevin Gocke 1:05:51
Oh, what hasn’t it taught me, to put it simply, I think everyone, including myself, even still, since the stroke, there’s a level of taking certain things, maybe people or life in general for granted. And what stroke has taught me is you never really realize how much we’re in our own bodies until there’s something wrong with it. And that, that’s something that really, really hit home for me, a friend of mine told me that.
Kevin Gocke 1:06:40
And it resonated because it was when my book when I was finally done with it. He’s kind of like, yeah, just, I was kind of reading, you know, kind of studying you a little bit. It’s like, you know, and I’m not sure if that’s exactly how he phrased it. That’s how I kind of picked up on it. And if that’s one thing I could say, is we yeah, we really don’t realize how much we’re stuck with ourselves until there’s something wrong with it, how much we’re in our bodies and our minds until there’s something a glitch, so to speak.
Kevin Gocke 1:07:17
So make it a good time. You know, the thread things hang out the right people make the right choices. You know, I mean, the list goes on all those cheesy cliches, you know that. A lot of people like to thumb their nose that, you know, maybe they think they’re too tough, or they’re not, it’s too soft to think that way. I mean, anyone as you know, who’s gone through what we’ve gone through, it takes a certain level of grit, to establish a life for yourself that you feel is well lived and worth living. So again, guess that’s what it’s taught me. And I’d be tough, and how to be happy and I’d be grateful.
Bill Gasiamis 1:08:11
Brilliant man sounds like you’re talking about perseverance, which is also a part of your book. It’s also one of your chapters. Perseverance, perseverance is kind of one of the things that I think I’ve learned. And, you know, I’d never done a four-year project ever on anything before. So to persevere through the idea of the book, to persevere through putting it in dot points, and it looks stupid and ridiculous, and, you know, nonsensical.
Bill Gasiamis 1:08:51
To persevere through that, and then to start to develop it, and to find a way to actually tell the story that was not just me bragging about myself, or telling, you know, to bring the people in to interview them too, to decipher what they said, to find the pattern, to outline it to turn it into a blueprint. And then to sit down and actually write it once I’ve done the two years of we’ll call it foundational work or research.
Bill Gasiamis 1:09:20
And then to write it, it’s perseverance. It’s just to continue to push toward the solution, whatever the solution is to follow the persevere towards the solution. And you might never get there. But what you do is you always pick up some amazing things along the way, some things that improve your life, emotionally, psychologically, and physically.
Bill Gasiamis 1:09:48
So it’s really good. That’s me, perseverance. Maybe next week if you ask me, it’s a different answer. But at the moment, I think it’s perseverance and it goes along with What’d you say? The other thing I wanted to ask you was, what would you say to other stroke survivors, if you come across somebody that is a stroke survivor that early on in their journey? What do you say to them?
Plateaus are a myth
Kevin Gocke 1:10:16
Plateaus are a myth. That’s, really a big thing for me. You know, plateaus are a marathon, and don’t let anyone no matter how, well established the doctor or PT, or therapist, I know that there are a ton of doctors and therapists who would agree that plateaus are a myth.
Kevin Gocke 1:10:43
But, you know, in my tenure, I’ve experienced a handful that really just really, put the fear of God into me, and Anna, you know made me believe that it was like, Okay, well, here I am at your five this is it, you know? No, I’m doing things that I couldn’t even do a year ago. It just keeps getting better just as long as you’re pushing yourself. plateaus are a mess.
Bill Gasiamis 1:11:13
Yeah, I think plateaus are a word that is used by insurance companies to find an excuse to stop supporting people on their road to recovery really, that’s the only thing.
Kevin Gocke 1:11:33
That’s spooky, but a great point.
Bill Gasiamis 1:11:35
It’s a lot of bullshit. The people that I coach tell me that’s a pattern that I’ve noticed in the people that I’ve coached they tell me that what they hear, they hear the word plateau, usually from their therapist.
Bill Gasiamis 1:11:55
And then after they’ve heard the word plateau, and the therapist has reported that then the funding gets cut. So it’s just a mechanism to justify cutting somebody’s support. So if you can, in any way, explain to your therapist to never use the word plateau in a report, then you’ve got half a chance of continuing the funding and the therapy.
Kevin Gocke 1:12:30
Definitely, because it’s so important. For a lot of individuals out there and you need that support still, you need that level of therapy, you know before you can become your own physical therapist. It’s, it’s a lot of work to get there.
Bill Gasiamis 1:12:52
Where can people get in touch with you if they wanted to learn more about you, where would they go?
Kevin Gocke 1:12:59
Yeah, so my name is just Kevin Gocke. You know, and not trying to overly promote this thing. And it’s right there. But, you know, Instagram, I’m pretty active on there actually recently started a YouTube channel. There are links in my bio on Instagram, Youtube, and Tiktok. Actually, I succumb to the Tiktok world, which was not something I was too thrilled about.
Kevin Gocke 1:13:48
But it’s actually been pretty cool. I’ve enjoyed it. And I’ve been able to do some workout videos on there and share some tips and actually reach a much broader audience because Instagram and YouTube are a little bit more limited. But in there, you will find a link in the bio, it’ll actually take you to my link tree, where you can also get on to Amazon and find copies of the book and things like that.
Kevin Gocke 1:14:14
There’s a lot of you know, kind of nuggets of wisdom in there. Which is, you know, I hope as many people as possible can learn from it again, like you said earlier, and I say this very humbly, but I wish I had someone like myself to talk to earlier on, and then like yourself as well. So that’s what the books are all about. But yeah, as far as finding me, Instagram, YouTube, and Tiktok.
Bill Gasiamis 1:14:48
I will have all the links on the show notes anyhow. So for anyone who can’t remember that just go to the recoveryafterstroke.com/episodes and Find Kevin’s interview you’ll be able to get all of the contacts, and also the link to the Amazon page for the book. Kevin, thanks so much for reaching out, man, I really appreciate it. I enjoyed our chat. I wish you well with the book launch and the book sales.
Kevin Gocke 1:15:17
Absolutely. And thank you, Bill so much for having me. It’s been a pleasure. It’s great talking to you.
Bill Gasiamis 1:15:23
Thanks for joining us on today’s episode to learn more about my guests, including links to this social media, and other pages, and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:15:38
If you’d like to support the show, the best way to do it is to leave a five-star review and a few words about what the show means to you. It’ll make it easier for other stroke survivors, looking for this kind of content and feeling alone in their recovery journey to feel better about the fact that there are other people that are going through what they’ve been through, that are overcoming what they’ve been through.
Bill Gasiamis 1:16:02
And it’s going to inspire and give hope and make stroke recovery better. So please do go along to iTunes and Spotify. If you’re watching on YouTube, comment below the video like the episode, and to get future notifications subscribe to the show on the platform of your choice. Thank you for being here and listening. I really appreciate you see you on the next episode.
Intro 1:16:24
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 1:16:41
All content on this website at any linked blog, podcast, or video material controlled by 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. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:17:04
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:17:26
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 1:17:43
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The post Stroke And Brain Bleed | Kevin Gocke appeared first on Recovery After Stroke.
1 hr 19 min
July 10, 2023Cerebrovascular Accident CVA | Melvin Milton
Comprehensive Guide to Cerebrovascular Accident CVA Prevention and Management
Introduction
Welcome to our comprehensive guide on cerebrovascular accident (CVA) prevention and management. In this article, we will delve into the various aspects of CVA, its causes, prevention strategies, and effective management techniques. Our goal is to provide you with valuable information that can help you understand CVA better and take necessary measures to prevent it.
Understanding Cerebrovascular Accident
A cerebrovascular accident, also known as a CVA or stroke, is a serious medical condition that occurs when blood flow to the brain is disrupted, leading to the deprivation of oxygen and nutrients. This interruption can be caused by a blockage (ischemic CVA) or a rupture (hemorrhagic CVA) in a blood vessel within the brain. The consequences of a CVA can be severe and potentially life-threatening, making it crucial to focus on prevention and management.
The Importance of Cerebrovascular Accident Prevention
Prevention is always better than cure, and CVA is no exception. By adopting a proactive approach to cerebrovascular accident prevention, you can significantly reduce your risk of experiencing a CVA. Here are some key factors to consider:
Healthy Lifestyle Choices
Maintaining a healthy lifestyle plays a vital role in preventing cerebrovascular accidents. The following lifestyle choices can significantly lower your risk:
Balanced Diet: Consume a diet rich in fruits, vegetables, whole grains, lean proteins, and healthy fats. Avoid excessive salt, sugar, and saturated fats.
Regular Exercise: Engage in moderate-intensity aerobic activities, such as brisk walking or cycling, for at least 150 minutes per week. Additionally, incorporate strength training exercises to improve overall fitness.
Weight Management: Maintain a healthy weight by balancing calorie intake with physical activity. Obesity is a risk factor for cerebrovascular accidents, so it’s important to strive for healthy body weight.
Smoking Cessation: Quit smoking or avoid exposure to secondhand smoke. Smoking damages blood vessels increases blood pressure, and raises the risk of cerebrovascular accidents.
Hypertension Control
High blood pressure (hypertension) is a significant risk factor for cerebrovascular accidents. It’s crucial to monitor your blood pressure regularly and take the necessary steps to keep it within a healthy range. Lifestyle modifications, such as a healthy diet, regular exercise, stress reduction, and medication prescribed by a healthcare professional, can help manage hypertension effectively.
Diabetes Management
Diabetes is another risk factor for cerebrovascular accidents. Proper management of diabetes through regular monitoring, medication, a healthy diet, and lifestyle changes can help minimize the risk of CVAs.
Regular Health Check-ups
Routine health check-ups are essential for identifying and managing risk factors associated with cerebrovascular accidents. Regular visits to your healthcare provider allow for early detection and appropriate intervention, reducing the likelihood of CVA occurrence.
Recognizing Cerebrovascular Accident Symptoms
To effectively manage cerebrovascular accidents, it is crucial to recognize the warning signs promptly. Familiarize yourself with the acronym FAST:
Face Drooping: One side of the face droops or feels numb.
Arm Weakness: Weakness or numbness in one arm.
Speech Difficulty: Slurred speech or difficulty speaking coherently.
Time to Call Emergency: If any of the above symptoms are observed, call emergency services immediately.
Quick recognition and swift action can make a significant difference in the outcome of a cerebrovascular accident.
Emergency Response and Treatment
When a cerebrovascular accident occurs, time is of the essence. Immediate medical attention can help minimize brain damage and increase the chances of a full recovery. If you suspect someone is having a cerebrovascular accident, follow these steps:
Call Emergency Services: Dial the emergency number in your country without delay.
Stay with the Person: Keep the person calm and reassured until help arrives.
Note the Time: Note the time when the symptoms first appeared. This information will assist medical professionals in determining appropriate treatment options.
Do Not Offer Food or Medication: Refrain from giving anything to eat or drink until medical professionals provide guidance.
Be Prepared: If possible, gather important medical information, such as the person’s medical history, current medications, and any known allergies, to share with the medical team.
Post-Cerebrovascular Accident Rehabilitation
Cerebrovascular accident rehabilitation is crucial for individuals who have experienced a CVA. It aims to improve physical, cognitive, and emotional function, helping patients regain independence and improve their quality of life. Rehabilitation programs may include:
Physical Therapy: Exercises and activities to restore mobility, balance, and coordination.
Occupational Therapy: Assisting individuals in relearning daily activities, such as dressing, eating, and bathing.
Speech Therapy: Addressing speech and swallowing difficulties.
Psychological Support: Counseling and emotional support to manage the psychological impact of cerebrovascular accidents.
Conclusion
In conclusion, cerebrovascular accident prevention and management are of utmost importance for maintaining good health and well-being. By adopting a healthy lifestyle, managing risk factors, recognizing CVA symptoms, and taking swift action during emergencies, you can significantly reduce the risk of cerebrovascular accidents and improve outcomes. Remember, prevention starts with knowledge and proactive steps toward a healthier life.
Now that you have a comprehensive understanding of cerebrovascular accident prevention and management, you are equipped with the knowledge to take proactive steps toward reducing the risk of CVAs. Remember, always consult with your healthcare professional for personalized advice and guidance. Stay informed, make healthy choices, and prioritize your well-being.
Interview with Cerebrovascular Accident CVA Survivor Melvin Milton
Melvin Milton experienced a Cerebrovascular Accident CVA which he is recovering from but some days it’s hard to remember appointments.
Instagram
Highlights:
00:46 Introduction
02:22 Melvin Milton had a Cerebrovascular accident (CVA)
11:28 Dealing with emotions after a stroke
19:03 Melvin Milton’s levels of recovery
26:48 Juggling two jobs before the stroke
35:00 The dangers of self-diagnosis and self-medication
45:34 Avoiding things that do not support recovery
50:37 Mindset plays a massive role in your recovery
1:00:51 Dealing with emotional situations
Transcript:
Melvin Milton 0:00
So level one was being able to walk again and not use a walker or a cane, and that’s going great. Level two is getting like my arm and you know like riding again and doing all the functions that I normally do, level three would be working on getting back to me repairing those friendships, and relationships that kind of suffer, and moving on from there, you know, and then get back to Me and what makes me happy.
Intro 0:34
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Melvin Milton

Bill Gasiamis 0:46
Hello, and welcome to episode 258 of the Recovery after Stroke podcast. In today’s interview, I’m joined by Melvin Milton who experienced a Cerebrovascular accident CVA, which is just another name for an ischemic stroke. All right, Melvin Milton, welcome to the podcast.
Melvin Milton 1:06
Thank you. Thank you for having me.
Bill Gasiamis 1:08
We took a long time to get here. Some of the things that delayed us getting together and chatting are very familiar to me. And one of the things that I think was happening, and you’ll tell me in a minute, if it’s true, is I think that you’re having some trouble with calendar appointments, and kind of registering them in your head that you have an appointment coming up in the next however long. Because I used to write them down. I used to have reminders, and I still miss my appointments when I was going through rehabilitation after brain surgery. Is that familiar?
Melvin Milton 1:51
It’s very familiar. People are like, well, you should write it down. I’m like, I can’t write it down because my hand is still you know. Well, you should put it in your calendar like well, typing is a lot. Well, you should like you know, so it’s gotten better over time. But for example, with our meeting, some do fall through the cracks.
Bill Gasiamis 2:18
So what happened to you?
Melvin Milton had a Cerebrovascular accident (CVA)

Melvin Milton 2:22
Oh, so July is almost year two right now 2021. Yeah, I suffered a left. I’m going to mess this up. I hope not a left CVA with a right hem.
Bill Gasiamis 2:51
A left CVA?
Melvin Milton 2:53
Uh-huh? With a right hem.
Bill Gasiamis 2:57
Okay, tell me about that. What is that?
Melvin Milton 2:58
That’s what my doctor said. He said cerebrovascular accident. That’s what he said. And I just found this out, because I haven’t really wanted to kind of explore in depth. What happened? You know, my first priority is to get better. And then I’ll, you know, the second step is to find out and the third step is to kind of help others if it happens to which I hope not, and if it does happen to.
Bill Gasiamis 3:39
Okay, I love it. So actually, according to Google, if I type CVA into Google, I get results from a website called healthline.com. It says my CVA is the medical term for a stroke sounds like a special way to say stroke.
Melvin Milton 4:03
I don’t know why you just didn’t say stroke but okay.
Bill Gasiamis 4:09
So, okay, you’ve had a stroke. So on the day of the stroke, what did you notice? How did you realize that was something wrong?
Melvin Milton 4:20
So that day is still really blurry. And I try to think about it and it’s coming back to me, as we go on, but I still don’t remember I remember that day so I had been doing a lot of traveling. I went to Michigan, Boston, and Denver, Colorado like, three weeks in the span of three weeks, then I came back home, which is Hawaii.
Melvin Milton 5:12
Then I flew back out to go to Vegas. So that was just a lot of, you know, like, post-pandemic, I just wanted to travel and get out. So, that whole thing was, is, is still kind of blurry, but I just remember working, and really not feeling well, like, you know, so I went home early, and then I woke up. And I went to the bathroom, and I you know, vomited, and I just did not feel good.
Melvin Milton 5:54
But then I, I woke up and my, my leg couldn’t move. And I was, you know, I just thought I’m gonna, I’m a really wild sleeper. So I just paid it to like, Oh, I just slept on it the wrong way, it should come back, you know. And so I went to the bathroom, and I was just kind of like, nauseated and just, you know, out of, I lost my bearings, and that fell.
Melvin Milton 6:22
And, I crawled back to bed. And I was just like, Well, maybe if I lay down, I will feel better, you know, but then I woke up and still nauseated and still vomiting. And, and then I, I was like, Oh, I’m not. This isn’t normal. So I called a couple of friends. And I finally want to answer. And, you know, like, and by this point, you know, I’m getting worse, as they call it, like, you know, like, I’m not as I’m not making sense.
Melvin Milton 7:03
And she said I think you’re having a stroke. She’s like, where do you live? I didn’t, I had just moved into an apartment about a month ago. So I didn’t really know. And I didn’t know, especially at that point. And that’s all that I remember. And then I woke up and just like, flashes. And so, um, I stayed and see the ICU for about a month. And then I moved out. And I was just in the regular part of the hospital, then I was in inpatient rehab for about a month. And then I went home. So that’s my story and the gist.
Bill Gasiamis 7:57
Yeah, understand. And when you went home, what sort of deficits did you go home with? What did you have to learn how to do again?
Melvin Milton 8:05
that was, Oh, that was. So when I went, Well, let me just back up and say that, when you know, I was in the ICU, the doctors don’t want to, you know, they don’t kind of, you know, let it go give you worst case scenario. And so they’re like, well, well, he’s not going to walk again. And he’s not going to do this and do that. And, so, my family and I will try to make, you know, like, preparations to, you know, get all these because, I mean, I’m in Hawaii, you know, with no family, they live, you know, on the mainland. And so, it was, you know, we had to make some adjustments. And so when I went home, I couldn’t have like, shower by myself, I couldn’t stand I couldn’t, you know, do any normal function really. So I was I had a walker then. So I couldn’t cook clean, or do anything. Basically, you know,
Bill Gasiamis 9:20
have any help at home did they manage?
Melvin Milton 9:24
I did have helped my family for the first part came down, and, you know, took care of me and my sister, my dad, and my Ontario, and then I had tons of friends that I’m so thankful for. I wanted to give them a good shout-out, like they are, you know, took time and made a schedule and, and came and brought me the things that I needed, and some things that the doctor said I I couldn’t have m&ms Hello, I’m so thankful for. So it was it was it was a group effort, to get me where I am today and I’m just totally thankful.
Bill Gasiamis 10:13
Yeah, M&M’s were not recommended by your doctors, for your physical health, but it sounds like they were necessary for your emotional health.
Melvin Milton 10:24
Thank you. Nobody, nobody gets that. Thank you. I knew I needed that to cope. I was, you know, I was going through like, Here I am, you know, so independent and have been, you know, all my life and having to, you know, depend on people it was an emotional toll. And I think one thing that I want to touch on we’re going to talk about this later, but I think that, you know, like, my brain was just like, going through a whirlwind of happiness, sadness, confusion, you know, so it was a lot to kind of, you know, understand,
Bill Gasiamis 11:16
yeah, roller coaster, it’s, yeah, for sure. How to describe it? How old? Were you at the time?
Melvin Milton 11:26
35.
Dealing with emotions after the Cerebrovascular Accident CVA
Bill Gasiamis 11:28
Yeah. So 35, everything’s going well, for 35 years, pretty much. Yeah, you have to deal with all of the drama of having a brain that has been injured by something that’s out of your control. And you have to come to terms with that emotionally, mentally, physically. And you have to do, it’s very rapid, it’s not like you get a warning, and you get time to plan for it.
Melvin Milton 11:54
Right. You have to, like, roll with it. And, and I think that you know, like, some, some people are, I’m sure you can attest to this as well. Like, some people, you know, didn’t quite understand like, Well, why is he mean, or why is he this? And why am I lashing out was it’s not? It’s, it’s I had a brain, I had three.
Melvin Milton 12:21
So I didn’t have one brain surgery, I had three. And so it was just a lot. Like, I was just like, a whirlwind of emotions, and I don’t think people quite understand how all that goes, you know, like, it made me way more emotional. And, and, and that’s just more understanding to people now because you never know what they may be going through.
Bill Gasiamis 12:55
Yeah, it’s so eye-opening. I was 37. So I was angry and emotional, and not myself. And right. Yeah, people were dealing with my illness as well. So they were they thought, oh, my gosh, this guy’s unwell. They thought, Oh, my, he might die. What does this mean for his future for our future? And then why is he screaming at me? And why did he get upset? The wrong ice cream.
Melvin Milton 13:23
You know, like, I’m so like, I I’m so happy that you brought that up. Because, you know, like, I had a falling out with a family member during last year’s Thanksgiving. And I, you know, just like, I just got overwhelmed with being surrounded with some, here I am, you know, mostly by myself with the first part of my recovery.
Melvin Milton 13:54
And then I’m going out of town to meet with my family, I’m exhausted, I’m overwhelmed. I’m emotional. And I just lashed out at one of my family members, and it just turned into this, this big, you know, like, this big thing. And so, you know, like, it’s, it’s, and we’re still not speaking right now. But, you know, it wasn’t me, you know, looking back over it. It’s like, I can’t I don’t even know how to explain it, but it was like, I’m looking back over. And I wouldn’t get upset about, you know, that, you know, but it was just a lot.
Bill Gasiamis 14:44
Yeah. It’s a thing, right? People are dealing with how they have to cope with what happened to them. Okay, so it’s confronting for them, that it makes them maybe think about their own mortality, their own health, and well obeying. It makes them think about their lifespan and all that kind of stuff, maybe. And then they go, Alright, I know what I can do is I can go and help Melvin out, and I can go and do some things for him and be nice and do all that stuff.
Bill Gasiamis 15:16
And then he speaks to me like that. Who would do that? Why would he speak to me like that? And then, you know, they might take it personally, and think that you’re having a personal attack on them. But what they don’t know is that everything is muddled up in your head, and stroke messes things up, and it takes a while for the things to recalibrate, and settle down. The only thing we can do, which I did a lot of was apologize. I just apologized a lot.
Melvin Milton 15:51
Yeah, and then. So like, I was reading, you know, all about you and the things, and one of the things that stuck out, like, when you were saying that you were, you know, not so nice and like that, like it really went home because I’ve had those episodes where I don’t like certain family members, I’m like, that I’m really close to in a real love so much like, they’re not, you know, talking to me right now, because of, you know, an episode that I don’t to be honest, I don’t even remember.
Melvin Milton 16:25
That’s the part about or, like sub certain friends. Like, I don’t even remember, like, you know, and I want to have these conversations, I want to you know, be able to clear the air and move forward. But, you know, how can I say like, I don’t remember when in my minor there probably like you’re just probably saying that, but I really don’t. Yeah, I know that something, you know, bad happened, or some words that weren’t so nice that were shared, but I don’t remember the basis of the argument, you know,
Bill Gasiamis 17:08
Yep. I found myself in lots of arguments that I had no idea what they were about. I was angry A week later, I still didn’t know why I was angry. Right? Right. So silly. But then all we can do is our part. So you’ve recognized that you, you may not remember that behavior, you’ve done it, they told you, you’ve done it, so you might as well believe them. And then you can apply it, you can apologize for it. And then you can go, the rest is up to you now, if you feel in your heart to forgive me, that’s fine. It’s up to you though. I can’t control that. And right, you know,
Melvin Milton 17:48
like, you know, like, the thing that, you know, like, I wish, you know, like people say, like I said before that they understand, but I wish that they could, you know, get a glimpse of how our brains are programmed, and we have to work really hard to get it back to normal, you know, I’ve been, I’ve been working my butt off too, you know, get back and I’m reading and watching podcasts and, and various Facebook groups and, and, you know, therapy, and, you know, so I’m doing my part, but I wish that you know as people would really give, you know, stroke victims a little bit more leniency and benefit of the doubt.
Bill Gasiamis 18:41
That’s excellent. What you just said was leniency and the benefit of the doubt. I mean, we can all practice that when it comes to those people who we come across in the shopping mall. In, in the bus, you know, in the wherever.
Melvin Milton 18:58
Shopping during Christmas.
Melvin Milton’s levels of recovery

Bill Gasiamis 19:03
During the crazy season, right? We could all give people some leniency and the benefit of the doubt. And if, if we did that for them, and they did that for us, that would make life so much easier, because it means that we can make mistakes. And those mistakes don’t have to be the end of the earth. They just have to be mistakes that we recalibrate from and learn from and move on from and overcome rather than take to the grave. I mean, it’s just not worth it.
Melvin Milton 19:36
It’s not, so what I’ve kind of done for myself, I’m calling it the levels of giving back to me. So level I’m on the level.
Intro 19:54
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary thing can feel Using 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 20:19
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 20:38
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.
Melvin Milton 20:57
Two or three, the level one was, you know, being able to walk again and not use a walker or cane and that’s going great. Level two is you know, like just getting like my arm. And you know, like riding again and doing all the functions that I normally do. And then you know, like level three would be, you know, working on getting back to me repairing those friendships, relationships that you know, have kind of, suffered and move on from there, you know, and then really, like, get back to me and what makes me happy. Like, for example, I love traveling, I love to work and, and I want to you know, get back to that, you know?
Bill Gasiamis 21:58
Yeah, so absolutely great goals. What kind of work were you doing?
Melvin Milton 22:04
So, I’m currently working two jobs. My first job I’ve been working at the Sheraton, Waikiki, and Honolulu. I’ve been there since 2011. Quite a while. And my second job, I’m an event coordinator at our local How would I say, event venue, so we do concerts and things like that.
Melvin Milton 22:39
So I definitely like to high pace jobs where I need to, you know, be on my feet and, and, you know, kinda, you know, be level-headed. And, you know, so I. So I’m working really hard. And actually, I’m going back to my event planning job really soon. So hopefully, I’m shooting for this year to go back to that.
Bill Gasiamis 23:12
I love Hawaii. I’ve been to Waikiki. Oh, great. Yeah. And we stayed somewhere near the Sheraton. I imagine I can’t remember where exactly we stayed.
Melvin Milton 23:24
Did you come into this place called Rimfire ever?
Bill Gasiamis 23:31
I can’t recall that.
Melvin Milton 23:34
That’s where I work. If you’ve come in for something I’ve probably served you.
Bill Gasiamis 23:43
Yeah, right. Okay. Amazing. So we spent time near that pink Hotel. What’s the pink hotel that’s there?
Melvin Milton 23:55
Oh, the Royal Hawaiian, which is next door to the Sheraton that’s our sister Hotel.
Bill Gasiamis 24:04
Okay, so we did spend time there. But we didn’t do a lot of the bar time in bars and places like that, because we had the kids with us. And they were both under the age of 16 at the time, so wouldn’t have been appropriate you see.
Melvin Milton 24:23
No, not yet.
Bill Gasiamis 24:27
And when we were there, I remember when we were there on the main road, they did a block party for the NFL. And they shut down the entire road down there.
Melvin Milton 24:42
They’ve just brought those back this year. And so they do it on the second Saturday of the month. So you just walk down the street and grab some food and grab some drinks and presents for everyone. That was one of the things that I really enjoyed doing.
Melvin Milton 25:05
When I first you know, got out of the hospital was to walk, you know, as far as I could just and then just to be, you know, because I had been away from, you know, no, I call it the real life or normal things or people. So that was able to, you know, walk and you know, purchase things and, you know, say hi to people I haven’t seen in a while. So, you know, that was really good for me.
Bill Gasiamis 25:38
I imagined the community in that part of that industry to be very tight-knit, there’d be everyone would know, you, and you would know, everybody.
Melvin Milton 25:47
Correct. They were everyone was, you know, and still it’s like, checking on me and calling like, the, like my coworkers were, you know, are so amazing. Like, they, you know, gave me you know, gifts and they bought me, you know, blankets for the hospital and the slacks and the m&ms and I weren’t supposed to have and, you know, when my family came to, you know, helped me out that took them around. They were just, you know, God’s sin angels. So, yeah, I want to thank all of my friends and co-workers for helping me out, you know, in so many ways.
Bill Gasiamis 26:33
Yeah. Yeah, it’s good. So now, the aim is to get back to both of your jobs? Or is it just to get back to one of them at this stage? And how far off do you feel you might be?
Juggling two jobs before the stroke
Melvin Milton 26:48
I don’t ever, as of right now, because, you know, I could change my mind. I don’t ever feel like I want to work two jobs again. I mean, I know I loved it. Because, you know, I could take off one hat. And, you know, put on another hat. And, you know, like, one job is not as serious, and one job, I am the boss. So I have to be, you know, a little bit more serious.
Melvin Milton 27:18
But, you know, I’m just, you know, gonna go with the flow and, and, and see how they, which one I liked the best and then just pick one or maybe even another one in the future. But hopefully, I’ll be back to work. Oh, hopefully, this month. Okay. Yeah, best of luck. It’s gonna be very slow. You know, it’s not going to be 40 hours a week, it’s going to be, you know, like, one or two days a week for, you know, three or four hours, you know, just to slowly get back into it.
Bill Gasiamis 28:05
So, you know, when you were working two jobs, how many hours a week we’re doing
Melvin Milton 28:13
Probably, like 50-55 hours a week?
Bill Gasiamis 28:19
Yeah. Did you do that out of necessity? Did you do that out of just the fact that you had time to do it? What was the thinking behind it?
Melvin Milton 28:30
I did it for a couple of reasons. Because my original plan was only to be in Hawaii for two and a half years, and that’s how long it took to get my master’s. But I found this job at the Sheraton and you know the benefits and the money the people I was having a lot of fun postgraduation and I kind of just stuck with it. And then I’ve got this other job as an event you know, manager or it’s, it’s more you know, in my field what I went to school for and I love doing it so I kinda did it for money and because I needed to work in my field.
Bill Gasiamis 29:27
Your master’s was in which field?
Melvin Milton 29:31
In the event planning Social Media Marketing.
Bill Gasiamis 29:37
Okay, so it was all linked there were all legitimate reasons. You are supporting yourself through college and all the things that you need to do. So it sounds like you were going about it the right way.
Melvin Milton 29:50
And definitely, I’m not gonna, you know, not a highlight this but definitely, because the money was good and I wasn’t tired. Hear them. And I was able to travel and, and shop and do everything I wanted to do. So yeah, it was it. You know, when I went to work, it wasn’t like I was, you know, like doing this, um, so tired. I’m like I was, you know, in a great mood happy to be there, you know, I’m gonna see what adventures I can, you know, do next you know? So it was a lot of fun.
Bill Gasiamis 30:32
Yeah. Did you feel like now that maybe you were neglecting your health or anything? Do you think there was anything causing that underlying there might have been no contribution to your stroke.
Melvin Milton 30:43
I definitely think I neglected taking care of myself, for example, my doctor prescribed me, you know, blood pressure medicine. But you know, of course, I took it, but I hated the way it made me feel. I hated that, you know, I felt I didn’t feel like myself, I felt, you know, kind of control. And it kind of brought me back to my childhood where I was on, I was prescribed ADHD medicine and, and that kind of that medicine kind of brought me back to my childhood where I felt controlled.
Melvin Milton 31:35
I felt, you know, tired, like, oh, I wasn’t myself. And so I, you know, me being the, you know, self-proclaimed doctor, well, I don’t need it, I feel fine. I’m gonna stop taking it. And, then that happened. But seeing that that happened now taught me a valuable lesson that, hey, you know, because if it’s not working, it was not quite right, go back and let them change it. And so that taught me a valuable lesson. You know, like, the minute, you know, I’m not feeling so great. I’m going.
Bill Gasiamis 32:11
Yeah, that’s a great lesson to learn. What’s interesting, I’ve never heard somebody say that blood pressure medication made them feel different or not themselves. So is that a common thing, you know? I’ve never heard that.
Melvin Milton 32:27
You know, I’ve talked to people that, you know, are on blood pressure medicines, and I’ve talked to a few and they don’t have any, you know, side effects, if you will, but I’m talking to one or two. And they have said that, you know, they feel a little off or, you know, something isn’t like, I don’t have full energy, you know, and then maintenance, I was talking to someone and somebody was like, well, maybe, you know, the blood pressure medicine was making you feel normal. I had been running off of, you know, not the medicine. And then that was bringing me you know, so that could have been the case too.
Bill Gasiamis 33:18
Okay, so, did a quick search about blood pressure medication making people feel strange. And it says Are they called alpha-blockers reduce nerve impulses to blood vessels, allowing blood to flow more easily. These medications may cause dizziness, lightheadedness, or weakness when standing up suddenly or getting up in the morning. Does that ring a bell? Did you have any of those experiences?
Melvin Milton 33:48
A lot of them like in the morning, you know, like, just like this good. Mornings are already you know, sometimes not the best, you know, like not pleasant, but it was definitely some Sundays have struggled and, and then went right after I would, you know, eat something and take my meds and I will get nauseous and lightheaded. So so but you know, but looking back over, like I said before like it’s one of those things where, you know, that was that was happening.
Melvin Milton 34:29
And it’s happened since then. And I’ve gone back to the doctor, and he said, Oh, well, we’ll just put, we’ll prescribe you this one. This one is better, you know, and it’s, it’s, it’s better. So what I want to tell anybody that’s that will listen to this is that if you’re taking medicine and you don’t feel so great, you know, call back and ask for a different dosage or a different you know, type of medicine, you know, until you get it right.
The dangers of self-diagnosis and self-medication
Bill Gasiamis 35:00
Yeah, absolutely. I hear so many stories of people who have stopped taking the medication for one thing or another, and they’ve had a brain hemorrhage or stroke or something like that. It’s not nice to hear, but it’s common. It’s very common. Yeah, you do hear about it. Especially when you described it. Like, if it’s, people kind of get it in their head, this is not making me better. This is making me feel worse. I’m going to self-diagnose it and not go and see my GP and not get professional advice on that.
Melvin Milton 35:35
That was me. The “I’m okay” I was a nurse, I was a doctor, you know, like, No, I’m okay. I don’t need it now. And then, you know, I was, you know, Google, Google is, you know, so good and so bad, because it, it kind of aides, a self-proclaimed nurses and doctors, oh, I can just, you know, take some apple cider vinegar in the morning, and I’ll be fine. You know, but it’s way more than that, you know?
Bill Gasiamis 36:10
Yeah. Deeper, it’s more complicated, we’re all unique. And my recommendation to you might not be suitable at all. And that might be the same thing for the next person. And it might help the other person a little. But we’re just so unique and so different.
Melvin Milton 36:28
Right. And nobody knows you. What I’ve learned too, is that nobody knows you more than your doctor, especially if you have a rapport with them. And you, you know, you’ve been seeing him or her for a while. You know, they know like, you know what to give you.
Bill Gasiamis 36:48
Yeah, so So Are you fully independent now? Do you live at home alone?
Melvin Milton 36:55
I was living at home alone. But Waikiki is getting so expensive now. So I wanted to, and then I’m not working, you know, those two jobs. So the income was not coming in like it used to. So I moved into a house with two of my friends, I work with one of them. And the other one is her brother. So I have helped if I need it, so my insurance and I just found this out this week, because I was so lost, because, you know, when I call it woke up, I had so many different things put in place.
Melvin Milton 37:46
But my insurance company is covering a housekeeper to help me with chores. So like things that I can’t do with both of my hands, for example, ironing or washing dishes, and, and you know, like, I do try to or making the bed, but I do try to do it but then I’ll you know, I’m sure you know this all too well get lightheaded and so fatigued and then I’m just like, they’re my arm starts to like space and, you know, it’s, it’s a chore.
Melvin Milton 38:29
But I’ve gotten so much better, like looking back at it. I couldn’t even I had to have a health aide come in and, and help me shower. But now I’m showering by myself, you know, I still need, you know, a shower chair because I can’t you know, stand up that long. I don’t want to, you know, slip and make matters worse, but, you know, I have you know, like, come a long way.
Bill Gasiamis 39:06
Yeah, that’s good to reflect on that. It’s so good. I’m glad that you’re noticing that. Stroke is very ADHD, isn’t it? Like, you start a lot of things that you can’t finish and then you need to get distracted and move on.
Melvin Milton 39:24
That is you know, like, I never thought of that. But that is a great way to describe it because like you know, like I’ll start like for example today. I you know, I wanted to you know, I woke up and I had a lot of energy and a great mood and like I’m going to clean the bathroom. So I was you know cleaning the bathroom. You know I get lightheaded and I’m like okay, I’m gonna lay down so like I started the bathroom. I’m about to get my new percentage done. I’ll finish it after this after this zoom, but, you know, if you’re right, like I start a lot of stuff that I just can’t finish.
Bill Gasiamis 40:13
And it’s not because of your attention is deficient that you’re born or lazy. It’s none of those. And it’s, it’s not because you can’t. Because you get distracted by something bigger or bright or better, it’s a little bit different. It’s because fatigue kicks in. Tiredness kicks in, whatever kicks in, and you have to literally sit down and lay down and rest until you feel better and well enough to do that. But I think I remember being in a situation.
Melvin Milton 40:44
I talked to my grandmother a lot, she’s 93. And she’s really excited about you know, as doing this, and she’s gonna be watching when it airs, but she, you know, tells me like you said to, you know, do a little bit at a time, you know, like, rest and get back to it. You know, so that’s what I, you know, kind of do you know, when I get these bursts of, I call it burst of energy. You know, get back, you know, get back to her.
Bill Gasiamis 41:17
Yes, the bursts of energy were great when they came. So you know, we were in Waikiki in 2013, it was less than a year after my tube blades and the brain. Oh, and, and I remember telling my wife, you don’t plan anything for me tomorrow.
Bill Gasiamis 41:37
Because I’ve, if I feel like the way I’m feeling today, I can’t do anything tomorrow, you take the kids, you guys go for a walk, find something that, you know, it’s going to be fun to do. Alone, maybe? Yeah, I can’t do it. And then I would wake up in the morning, feeling amazing having one of those bursts of energy and forgetting everything I said yesterday, we’re on, let’s go and do some stuff.
Melvin Milton 42:02
Right. And I think that, for me, looking back at it and listening to that, like, I think I need to kind of explain that to people because they don’t, you know, quite get it like, Oh, I’m great. I’m great. And then you know, an hour later. You know, it’s, it’s not me, you know, but so my question to you is, will it ever get better?
Bill Gasiamis 42:37
That’s a good question. And I like to be a little bit of the opposite of doctors. And I’d like to create possibilities for people and give them hope. And say things like, yeah, absolutely, it can get better. Because you are so early in your recovery. And your, My recovery has been going on for 10 years, and I’m still having bad days that are stroke related. You know how sometimes before the stroke, you had bad days, and you could just you know, have a rest and you went too hard or for too long? And you just write it off as Okay, I’m going to do nothing tomorrow, I’m just going to flake out somewhere.
Bill Gasiamis 43:18
It’s like that, but the stroke complicates those days and makes them harder than they used to be. And I still find myself in that situation, but less and less. So it’s not as common as it used to be for me to be able to blame, how I’m feeling on the stroke, the brain surgery, the brain damage, all that stuff. It’s less common that I do that. And therefore what I’m offering people is hope and what I try and say to people.
Bill Gasiamis 43:52
Especially the ones who I’m coaching who have really big goals that always let them you know, that seem to let themselves down is a one-year poststroke is like you just walked past the coffee table and smashed your foot on the corner of the leg. It’s like it’s that soon it’s so early in the recovery. And you know, the next day, you realize oh my gosh, my foot still hurts and I’m gonna go and get it checked out and then you get it checked out and then it’s fractured.
Bill Gasiamis 44:25
And the doctor says six weeks and the fracture will have healed and it’ll be better to stay off at an arrest right? Stroke doesn’t have a timeline. That’s the thing with it. And if you damage your foot or toe and I damaged my toe, they do give us the same timeline doesn’t matter how different we are as people. They give us the same six weeks the bone will heal. Everything will be back to normal. Stroke is completely unique.
Melvin Milton 44:57
Yeah, I was on one of the Facebook groups, and some, you know, I always, you know, kind of start my day and now you know, kind of read and see what people are posting. And someone said that I had my stroke, I think tenuous, close, but they said, and then they said, I just got a feeling in my hand, and I was just like, wow, after 10 years, so you’re right, like you, it’s honest on time.
Avoiding things that do not support recovery

Bill Gasiamis 45:32
So, it’s so strange. And it’s so hard to tell people that that don’t give up on having a new experience or something, come back to 10 20, whatever years away, but require some work, we have to look after ourselves and look after our health, and we have to avoid smoking, we have to avoid drinking if we can.
Bill Gasiamis 45:56
And we have to avoid a whole bunch of things so that we can create the right environment for the healing to continue to occur. You know, how some people smoke and drink excessively all the time and forever, they’re always creating the environment for health to decrease and things to get worse, we need to do the opposite, we need to make space for the brain to flourish.
Melvin Milton 46:21
Right. That is really true. And, and I’ve been learning, you know, so. Yes, so I did have questions. So I know that you know, I’ve talked about relationships, and for those relationships and friendships that I, you know, that have kind of suffered?
Melvin Milton 46:50
What do you recommend or what have you done? To kind of, you know, like, you know, we visited Max, I don’t want to lose, you know, the friendships that I’ve built, you know, for 10 plus years, so I don’t even want to, you know, not talk to, you know, my family members, you know, so how do I just kind of go from there,
Bill Gasiamis 47:16
I just got good at making appointments to see people and say, Hey, I know, I know, things have been a bit strange or weird at the moment between us. But I’d love to come and see you, or at least talk to you on the phone. And just explain myself, if not, in those words, you might have different words. But it’s like, let me explain myself and why I was that way.
Bill Gasiamis 47:39
And one of the other things I really did was I made this podcast for all the people that misunderstand stroke survivors. It’s for the purpose of trying to explain the unexplainable in stories. Yeah. And then what I hope is that some of the people who I’ve interviewed can go listen to my interview with Bill because this will explain a little bit about what I’ve been through and what my journey is. And it’ll tell you things that I can’t put in words or don’t know how to put in words.
Bill Gasiamis 48:17
We covered these topics. And we spoke about you, we didn’t mention your name or anything, but we spoke about you and the issue that we had in the podcast. So maybe that will help you understand. And you just reach out to them from your heart. And you just explain to them it’s not personal. And you’ve had 12 months of healing. So now you can reflect on the problem and the challenge that you caused and created. And now you can say, I see where I went wrong, you know, and I just want you to know, it wasn’t personal. It was my brain just being muddled up and rewiring.
Melvin Milton 48:56
Well, do you know why? Because I went through a phase of being, you know, like, I went through like an upset, angry, sad face. Like why do you know why that kind of happens?
Bill Gasiamis 49:15
Yeah, well, a lot of stroke survivors say that they have kind of a similar response where they have a real deep depressive sort of stage. And a lot of the times it’s actually caused by the nervous system being out of alignment and not being able to come back into balance in harmony, you know.
Bill Gasiamis 49:36
And sometimes you’ve heard of people who are bipolar, for example, whose nervous system makes them feel very, very happy at one point, and then very, very low at another point, and they always trying to get back to balance as well.
Bill Gasiamis 49:53
After a stroke. The damage throws out the balance and then you have to find a way to get back there. And the body’s readjusting and trying to get you back there on its own, just through the healing process.
Bill Gasiamis 50:09
And we also might be dealing with the difficulty of learning about, we are mortal now, we might be dealing with the difficulty of learning, if not independent anymore, I can’t do that, because I used to do, somebody will be concerned about not being able to pay the bills, the rent the food, and, and then they come back from the hospital with, you know, hospital bills, and all that.
Melvin Milton 50:35
All these new norms.
Mindset plays a massive role in your recovery
Bill Gasiamis 50:37
All these new things that they didn’t have to deal with before, and they may not have the skills to deal with it. And it’s difficult, because not only is it difficult because you’re dealing with stroke recovery, it’s difficult because they have all these extra problems that they never had before the stroke. So it gets people down, and their mood gets impacted.
Melvin Milton 51:02
I know that I spent probably the last part of last year to the first part of this year, really depressed, like really like in a dark space in. And you know, like, I’ve been climbing my way and, and working on getting out of that. And, you know, I’m currently still and PT, and OT, right, and I’m going to keep going to that for as long as I can. And until my insurances, you’ve had enough, no, because this, like, I still want this to work.
Melvin Milton 51:52
And I still want, you know, I still want to be able to walk, like, for example, like, my leg is fine, I can walk. But then there’s like certain days when I wake up, and it’s hard for me to walk around my leg, the lower part of my leg, it’s really tight. And you know, and then I can’t wear flip flops on my right foot, because my leg doesn’t have the control. So until you know, and, and I can’t write, you know what his right hand so until I can get you to know those things back, I’m gonna, you know, still go to therapy for it.
Bill Gasiamis 52:34
Yeah, I think we should. The other thing is, some people are not as happy-go-lucky as others, some people have just a habit of having a mindset that thinks about the negatives. And if you have that type of habit, and you have a stroke, it’s possible for you to start thinking of all the negative things that come from that, and it takes you a bit lower down, right?
Bill Gasiamis 52:57
So the mindset is really important. And what you seem to me like is, you seem like you’re happy-go-lucky most of the time. And now. And now you’re thinking about things that you’re going to go after to get back to recover from.
Melvin Milton 53:14
That’s exactly true. And, and, you know, one of the things that, you know, I’m getting back to would be, like I said, work, but number one is travel. So, one of my friends, I wanted to say thank you to her like she’s been an angel with taking me to, you know, the grocery store doctor’s appointments. And then for my birthday, which is in August, she is we’re going to see Beyonce Neck. Well, this month. So I’m going I’m traveling again. So, you know, like I am, I’m slowly getting there back to, you know, traveling and going to concerts and working soon. And, you know, like, my mood is great. So I’m I like to think that I’m almost there. Do you know?
Bill Gasiamis 54:13
Yeah, that’s great. One, I think that you’re almost there instead of so far away. Yeah. doesn’t talk, right? It doesn’t help.
Melvin Milton 54:22
Oh, my God. Take everything make everything worse. Yeah.
Bill Gasiamis 54:27
Yeah, think about you’re almost there. And if you’re not there, just keep going toward that place that you want to be. And that does help. Mindset plays a massive role in your recovery. And, you know, what also plays a massive role is gratitude. Now, I’m not saying that you can be I’m not saying that you have to be grateful for everything that stroke has caused or done because some of those things are not amazing.
Bill Gasiamis 54:52
But right be grateful for what you have and what you’ve been able to achieve and what you’ve been able to overcome and what you’ve learned about yourself and the new skills that you’ve acquired that you need. So it just, it’s really important that people practice gratitude, in spite of their suffering, so that they can find a way to look at is there a silver lining in this bloody thing that happened to me, you know.
Bill Gasiamis 55:19
And there might be now you already talked about the silver linings, your friends are amazing, they helped out, you know, you’re, you’re been able to get back on your feet, you appreciate how what other people are going through that you couldn’t appreciate before.
Bill Gasiamis 55:37
You’re more empathetic, you know, you found new ways to solve your problems, instead of living alone, now you live with another two people to bring down your costs. So it’s a bit easier. There are so many things that you can be grateful for, that you’ve worked on, and that you’ve overcome. And if you look for solutions to problems, you get solutions. If you look for problems, you’ll get more problems.
Melvin Milton 56:03
Yeah, that’s, you know, like, I’ve just been, as I said, claw in my, I feel like I’ve been in such a deep, dark place. And I’m just clawing my way out to get to the top. And I, I see the light, and I’m not going to stop to like, you know, the light. So yeah, I’m looking back over it. I’m thankful for, you know, what I’ve been through and how far I’ve become, because, you know, the doctors said that, oh, I’ll never do this. I’ve never done that. And I’m, I’m proving them wrong. And I’m just so thankful for everyone’s, you know, prayers and thoughts. And, you know, like, I’m still here, and I ain’t going nowhere.
Bill Gasiamis 56:59
Because a lot of blessings there. Did you go through that process? Do you separate like, the emotional and mental health side of it? Did you have any of those thoughts? Did you do the Oh, my gosh, I’m mortal? Or were you already aware of that? Like, how did you navigate that part of it?
Melvin Milton 57:27
I think it was, it was hard, because I’m so used to being independent, like, you know, buying everything I need, and, and, you know, just not asking for help. So that part of having to always ask, it’s, it’s like, I’m still not, like, for example, I’m not driving yet. I’m almost there. Hopefully, you know, by the end of the summer, I’ll be back. But it’s tough, having to “Do you mind taking me?”
Melvin Milton 58:05
You know, or, or just, you know, because I don’t want to be a burden to people. So that part is, is still, you know, rough for me to ask. Yeah, you know, but it’s, but I have people that really don’t mind, I just have to ask. But yeah, it’s taught me a lot to you know, appreciate.
Bill Gasiamis 58:31
If there are some people that are listening who are not stroke survivors, I’d like to encourage them also, to feel comfortable saying, No, I can’t help today. And not feel like it’s necessary to always say yes to a stroke survivor who asks for help. that nobody’s making you do it. And they’re just asking, and if it’s not possible, there might be another way to solve that problem.
Bill Gasiamis 58:55
But hopefully, nobody feels the obligation one way or another. Hopefully, it’s just a legitimate conversation. Hey, any chance I can get a lift? No, not today, because I can’t. Well, that’s it. Hopefully, there’s no guilt associated with that or anything else.
Melvin Milton 59:15
So I wanted to ask you something so I did, I had an I would consider this person really close friend of mine. They came to the hospital and sat there and, and, you know, when I was in the hospital, it was, you know, in and out. So I don’t remember a whole lot of things, but I do remember that this person, you know, sat on the bed and then tears and said, I’m gonna help you. I’m going to, we’re going to work out we’re going to eat healthy, we’re gonna, I’m gonna get you back.
Melvin Milton 59:56
And, I reached out to this person and like, hey, I got some extra, you know, exercises when you have time? Can you help me? I’m not saying, you know, twice a week or just whenever you have time. And this person told me, No, they couldn’t do it right now that would have to be, you know, a couple of months, you know, and then this person, so since then this person, we have not communicated.
Melvin Milton 1:00:31
And, you know, he came to say hi to me at my house one day, and then it was just that day when I was, you know, not in the best of moods, and I just wanted nothing to do with the conversation. And, we haven’t talked since then.
Melvin Milton Dealing with emotional situations
Melvin Milton 1:00:51
So, my challenge is how would I, you know, recreate a space that says, hey, I’m, you know, I’m back, or, I don’t know how to do that. Because, for me, I was hurt. Because, you know, I’ve got this goal, like, I’m gonna, you know, get better because I have you helping me. And then when I, you know, try to use that, and you turned me down, it destroyed me. So how would I kind of, you know, recover from that?
Bill Gasiamis 1:01:32
In emotional situations, like seeing a friend that you love in a hospital bed. People often say things they often overpromise, and then they don’t really have the skills to deliver. And it might be emotional skills, psychological skills, or physical skills. And what they do is they, they sort of step back, and when he came to visit you, he might have again misunderstood.
Bill Gasiamis 1:02:01
What is actually going on with you, when you’re having a really low day a really fatigued day and your mood isn’t the best? And he might think that it was personal that you were taking it out on him because of how he didn’t behave. Really. Yeah, right. Okay, so this is the thing, right? So all you need to do is I reckon create a meeting over lunch or something like that at a neutral location.
Bill Gasiamis 1:02:27
When I say neutral, it’s just a lovely place outdoors, right? Guys love to hang out, and just go there and go, Hey, let me buy you lunch. That’s it. And just start with that and just say, Listen, let me buy lunch. And right at the beginning, let me just tell you about how I was and what I thought. And now I’m understanding things differently.
Bill Gasiamis 1:02:48
And I’ve come to have an awareness and I’m sorry if I misunderstood or treated you harshly. And then let them say their part because I bet you they’ll be feeling the same thing that someone is waiting to make the first move to smooth things over, you know. And I think if you just do that a mutual venue at a neutral venue where you guys both love hanging out.
Bill Gasiamis 1:03:16
And it’s over a light lunch or something like that. I think it’ll go really well. And you just create the expectation. I’m going to be here for lunch. One of these days, which day suits you best to make sure that it’s really comfortable for everybody. Just reach out you got nothing to lose. And when you do that, what’s important for that Melvin when stroke survivors do reach out, that really helps to heal the brain.
Bill Gasiamis 1:03:52
If you can get the emotional healing and all of that stuff off your shoulders. It creates a base for healing the brain you know, it allows the energy to go somewhere else. And then you don’t have to worry about all of this additional energy that you need to allocate to healing friendships and relationships. You can do those get them done and then move on to healing yourself.
Melvin Milton 1:04:24
I like that healing the brain because it I feel that you know, I have been doing it and I feel like the there are two or three people that I want to you know, kind of have that conversation and you know, kind of smooth it out and then once I do those three I think I will be you know better because it bothers me, you know, that I don’t have those people I would call every day? You know, or send a meme to you on Instagram, you know? Or go out to eat with you know, so it’s, I will definitely do that soon.
Bill Gasiamis 1:05:19
There you go. So if a bothers you, then it’s getting in the way of your energy and it’s and it’s decreasing your battery for the day, you know, if you’re thinking about it and you’re being bothered by it. That’s, that’s not Yeah, it’s not creating a right the right environment for healing the brain, you know, the thing about stroke recovery, people don’t realize sometimes and it makes sense that you could miss it is that it’s the emotional recovery is really important.
Bill Gasiamis 1:05:50
Mental health recovery is really important. And then the physical recovery is really important, and they all have to happen, you can’t just do, I’m gonna get back to walking again, and then never talk to anybody for the rest of your life. You know, yeah, you can’t do that. And you can’t just neglect your walking, and then just have a really good mental health state, if you never decide to go after your walking and mobile, right?
Bill Gasiamis 1:06:19
They’re all linked, if you do one, it benefits the others, and they are all necessary. So that’s why healing relationships, and at least doing your part so that you’ve done your bit, if they choose not to reciprocate and not turn up to lunch, then you have to give them love and just let that person make their own decision in life.
Bill Gasiamis 1:06:46
And you have to be okay with it. It might be difficult at the time, but eventually, you have to be okay with that and let them go. I think what I learned was, when I did the, when I did the reaching out, and healed my relationships, the ones that I had messed up a little, I felt better about making the effort. And then I just left that other person to, to do their thing, what they needed to do in their own time, you know, so I don’t put, what’s the word, unnecessary pressure, forced them into something, you know?
Melvin Milton 1:07:22
Well, that makes sense. Because they have to, you know, kind of heal on their own. And that’s what I, you know, have been struggling with, because I’m like, well, well, shoot, I don’t even remember what I say, or what happened, you know, but hopefully, I’ll share this with them when it airs, and then they’ll be, you know, a little more okay with that.
Bill Gasiamis 1:07:54
Yeah, it might help. It definitely might help. Hey, I want to really thank you for making such a massive effort to get on the podcast, scheduling and rescheduling and rescheduling again, and being okay. With the fact that you missed a couple of appointments, no big deal, no harm done. And, here we are. So perseverance is really important in recovery. You’ve read, I really want to thank you for persevering and joining me on the show.
Melvin Milton 1:08:27
Thank you so much, Bill. I appreciate it.
Bill Gasiamis 1:08:30
Thanks for joining us on today’s episode to learn more about my guests including links to their social media and other pages. And to download a full transcript of the entire interview please go to recovery after stroke.com/episodes. If you would like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:08:54
If you’re watching on YouTube, comment below the video I love receiving comments, and I respond to all people who comment, like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. Now if you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:09:19
All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor or you work with stroke survivors go to recoveryafterstroke.com/contact, Fill out the form, and as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over Zoom. Thanks again for being here and listening. I really appreciate you see you on the next episode.
Intro 1:09:46
Importantly, we present many podcasts 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 1:10:03
All content on this website at any linked blog, podcast, or video material controlled by 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 1:10:25
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:10:47
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. While we aim to provide current quality information in our content.
Intro 1:11:10
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The post Cerebrovascular Accident CVA | Melvin Milton appeared first on Recovery After Stroke.
1 hr 12 min
July 03, 2023 Can High Dose Physiotherapy Improve Walking Post Stroke | Dr. Kate Scrivener
Dr. Kate Scrivener is leading a team of researchers to discover if high-dose physiotherapy can improve walking after a stroke.
MJA Article
HiWalk Info
Dr. K. Scrivener
Repsexercise
LinkedIn
Contact details for HiWalk
Phone: (02) 9850 6625
Email: [email protected]
Highlights:
01:12 Introduction
02:55 Dr. Kate Scrivener’s Medical Background
11:13 Access to Physical and occupational therapies in older ages
19:25 Dr. Kate Scrivener’s ongoing research project
23:25 Qualifications to sign up for High Dose Physiotherapy
30:13 Dealing with fatigue issues for research participants
39:05 Emotional, physical, and psychological support
49:13 The next phase after the study
54:39 Recruitment process in Melbourne Australia
Transcript:
Dr. Kate Scrivener 0:00
So there’s no restriction on age. For time post-stroke, we are looking for people who are more than six months after their stroke, but less than eight years, the other criteria, so it’s really for people who can walk but would like to walk better. And I look at it in a few ways based on kind of what people tell me. The kind of common things they tell me.
Dr. Kate Scrivener 0:28
I can do X, but I want to do Y. So they have a clear goal. And what’s motivating them to kind of sign up? The other thing that sometimes people will say is that something’s happened. So they might have had a fall and they say, look, I had a fall, just feel like it’s set me back and I want to get on and have a boost to try and get back to where I was.
Intro 0:59
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – High-Dose Physiotherapy

Bill Gasiamis 1:12
Hello, and welcome to episode 257 of the Recovery after Stroke podcast. My guest today is Dr. Kate Scrivener. Senior Lecturer in physiotherapy in the Department of Health Sciences from Macquarie University in Sydney, Australia. Kate is conducting a study specifically designed to see if it is possible to improve the walking ability of stroke survivors who are at least six months post-stroke, but no more than eight years post-stroke and are currently walking, but have some walking deficits.
Bill Gasiamis 1:45
The study is being conducted in two locations including Sydney and Melbourne. Kate is looking for volunteers who may be interested in participating and who are based in Melbourne to sign up and be a part of the study.
Bill Gasiamis 1:58
The Sydney group of volunteers has already been filled and the study will commence on the first week of July 2023. The Melbourne group will hopefully be recruited and ready to participate in the study by August 2023. Go to recoveryafterstroke.com/episodes to get all the links to more information on the study and download the PDF flyer with further information.
Bill Gasiamis 2:24
If you are in a country outside of Australia, this conversation may also be interesting for you if you want to improve walking after a stroke and you’re curious about new ways and other ways to go about it. Kate Scrivener, welcome to the podcast.
Dr. Kate Scrivener 2:43
Bill thanks for having me.
Bill Gasiamis 2:45
My pleasure. Thanks for being here. Tell me a little bit about your background what you do and how you managed to be in the situation where we’re chatting today.
Dr. Kate Scrivener’s Medical Background

Dr. Kate Scrivener 2:54
So I’m a physio by background Bill. And I’ve worked particularly in stroke rehab in various forms for almost 20 years. I’m from Sydney Australia, and now my primary role is an academic role at Macquarie University, where I teach physiotherapists about neurological rehab and research in particular in stroke rehabilitation.
Bill Gasiamis 3:26
How did you get to be involved specifically with physiotherapy in the stroke field?
Dr. Kate Scrivener 3:34
Yeah, I don’t know, I don’t know I have some family connection to stroke. So I wonder if that’s it. But I set out as many physiotherapists do to, you know, work with healthy sporting people. And then as you know, in my experience at university found that it was much more interesting and much more rewarding to help people on their recovery journey after a stroke. And that’s where I landed ever since.
Bill Gasiamis 4:06
The cool part of Physiotherapy is you always hear about people working in Sports Therapy, or, you know, for the biggest football team or the most, you know, famous tennis stars or whomever. And it makes sense that that’s kind of an area that attracts a lot of people’s interest at the beginning.
Bill Gasiamis 4:29
But it’s a very small niche because there are only a limited number of football teams. And then there are also only a limited number of superstars that you can get lucky enough to work with. So how did your early career unfold? Where did you find yourself getting your experience from?
Dr. Kate Scrivener 4:51
So really, I worked within the public hospital sector and just did my very best because if anyone knows the public hospital sector, they like to give you varied experiences, which is great. But I knew I loved stroke rehab pretty early. So I did my very best to get as much experience as I could in stroke rehab until I was able to kind of get a job that was completely full-time in stroke rehab, which was fantastic.
Bill Gasiamis 5:28
So what are some of the differences between working with we’ll call them non-stroke people, stroke people? I know there are heaps, but what stands out as being some of the differences, I suppose, in the challenges working in that space, oh,
Dr. Kate Scrivener 5:45
Bill, you would know this more than I do. I think it’s just such a privilege time to work with someone because, you know, I can’t even imagine what it feels like to be just living your life and then, in an instant, have something pretty bad happen. Most of my stroke experience is at a hospital in Sydney called Bankstown Hospital, which has a comprehensive stroke in it so acute right through to rehab.
Dr. Kate Scrivener 6:18
And so you’d meet people the day of or the day after their stroke, and understand the impact of it on their life. But then, you know, have the privilege of working with them, or alongside them to build their recovery. And yeah, I just feel like it’s a very rewarding physio because you can have such an impact. And you can help people on that journey. Sometimes Bill doesn’t quote me on this, but when you’re working with people that are already healthy, and they have, you know, something that sore, for me, it just doesn’t have the same meaning.
Bill Gasiamis 7:03
It doesn’t have the same meaning for people who are healthy as well. So as somebody who was very normally situated in the world of physical experience, I didn’t take a lot of satisfaction in going to the gym, or running, although the outcome of playing soccer, for example, was fun because I got to hang out with people, I never realized how important it was to be able to do those things, without thinking twice about them.
Bill Gasiamis 7:47
And then I could say, I took it for granted, which is pretty common and fair. And then you go about life, and then all of a sudden, that’s taken away from you. All you wish is can I get back to what I was like before, or finally everything was like it was before, and that isn’t constructive. But then the goal of getting up and walking in the wind of recovering your ability to move independently is a massive achievement.
Bill Gasiamis 8:20
It’s a massive accomplishment and something that changes completely the way that you experience your physical body and the way that you experience how you identify in the world that you were raised in and that you’ve spent the majority of years in. And when you have such a big contrast of this is what life was like for 37 years and now this is what it’s like going on from there.
Bill Gasiamis 8:50
It’s a really difficult thing for some people to come to terms with. And what we often hope for is that there’s going to be an unlimited, never-ending supply of occupational therapy, physiotherapy, physical therapy, any kind of therapy that’s going to get us where we want, but it often doesn’t come.
Bill Gasiamis 9:13
How much access do you have to the patients that you are introduced to when you’re in a hospital with them? And then how does that relationship evolve after a few weeks or months? And their recovery is sort of starting to evolve into the next phase?
Dr. Kate Scrivener 9:32
Yeah, that’s such a great question. I think you’re so right about walking and being tied to people’s identity, you know, people always tell me they want to walk again. And when they do, it’s like, yeah, they’ve jumped over a huge hurdle to finding some of themselves again.
Dr. Kate Scrivener 9:58
Yeah, so I think what’s interesting is I’ve worked in the public hospital system. But now or in the last few years, if I work at all, it’s in the community or the longer term after stroke. And my interest has turned to that group.
Dr. Kate Scrivener 10:13
Because I think it’s what your question was hinting at Bill that we spend a lot of time with people generally when they’re in hospital. For some people, it’s a bit variable, what you have access to when you leave the hospital, but most people will have access to something in the weeks or months after leaving the hospital.
Dr. Kate Scrivener 10:35
But then what people have access to ongoing in the longer term after stroke in Australia anyway, is highly variable. varies by age varies by what, you know, sector of funding you can go into varies by postcode, and what’s in your local community. So there is, yeah, huge variability. And I think the honest answer is some people, when they’re months or more, after their stroke have access to almost nothing, if not nothing.
Access to physical and occupational therapies in older ages
Bill Gasiamis 11:13
Yeah. And you mentioned age being a variable. At what age? Do you see that support being reduced? It’s my experience that in older ages, there seems to be less of an opportunity for somebody to access physio and occupational types of therapies. Is that correct? In what do you see? And do you have some sort of an understanding as to why that is? Why it is that older people get less, what’s the word support or services? Where, in my mind, it seems like they should be at the top of the priority list and get more. But that’s not the case.
Dr. Kate Scrivener 12:04
It’s an overall picture, that’s my experience too. And if we look at support available in Australia, our disability support is for people who are 65, or younger when they have their stroke. But as we all know, I’m sure many people over 65, when they have their stroke, which in Australia puts you in the aged care sector.
Dr. Kate Scrivener 12:36
That is changing but historically has not been very goal or participation-driven. It’s been very minimalistic, in terms of actually achieving what the older person wants to achieve. I hope it changes. I think the Aged Care Royal Commission has suggested some changes to that.
Dr. Kate Scrivener 12:59
Either way, we still have a different system, depending on how old you are, which I think is not great for a condition like a stroke, which does span the age brackets, you know, I don’t think we should have different systems, different pockets of funding, depending on how old you are when you have your stroke.
Bill Gasiamis 13:26
Well, it’s a form of discrimination. I mean, it’s probably the most obvious form of discrimination where people that experience a disability or an acquired brain injury or something of a serious nature after a certain age, we’ll call it after 65, at least in Australia, and I see it around the world anyway, because I interview a lot of people around the world.
Bill Gasiamis 13:47
But in Australia, because we’re both here. It seems to be discriminatory. And it’s so plain and so obvious, yet there is nobody paying attention to it. We’re all going to be hopefully older than 65 at some point in our lives. And that means that the people who are discriminating against older people are creating a system that’s going to discriminate against themselves when they get older. And I just said it’s completely bonkers.
Dr. Kate Scrivener 14:21
Well, look, I’m pretty passionate about it. I wrote an article about this in the Medical Journal of Australia recently and the Physio Association picked it up, which was great. I don’t know if I’m quite on that line. Like I’m hopeful that older people will get better funding in this space. It does still bother me that it’s different.
Dr. Kate Scrivener 14:46
And I think it makes a complex system and system that’s pretty hard for people to understand and navigate. But there’s probably no I think the quick solution is helping to fix The aged care funding in the long term wouldn’t have been nice. If there was one source of funding to meet people’s needs.
Bill Gasiamis 15:10
Yeah, seems like the system is fragmented. As a result, people can easily fall into the cracks, and therefore, it’s somebody else’s problem in another department and not ours, I imagined that the aged care department is probably screaming out for funding or more funding or better funding.
Bill Gasiamis 15:28
And they would be constantly going through the process of trying to advocate for their community, or the people that they’re allocated to care for, and they would be struggling. But it’s great and I never knew about the fact that there is some work being done to potentially create awareness in that space.
Bill Gasiamis 15:54
Now, I am going to remind you that at the end of this interview, we get the link to that particular article that you wrote, so that we can share that with the people who are listening. Most people who are listening might be interested in reading your perspective, and that’d be good if it gets a little bit of extra traction.
Dr. Kate Scrivener 16:14
No problem.
Bill Gasiamis 16:16
So in your space, as a lecturer is a neurological physiotherapist. Is that different from a physiotherapist? Is that another kind of part of physiotherapy that additional skills or knowledge that you require to get into that space?
Dr. Kate Scrivener 16:42
Look, there are kinds of levels to qualification. So every physiotherapist who graduates from University will be trained in neurological physiotherapy, and trained to work with people after a stroke. It’s part of the core curriculum for their degree.
Dr. Kate Scrivener 17:04
But then after you finish that you can go on and do further study to specialize in neurological physiotherapy. And there are a few pathways. To do that, to gain kind of extra qualifications. I went down the research pathway. So I started my Ph.D. and have continued to research stroke.
Bill Gasiamis 17:36
Yeah, tell me about some of the research projects that you’ve done to date.
Dr. Kate Scrivener 17:40
Yeah, so I guess my interest in walking after a stroke started during my Ph.D. So in my Ph.D., we looked at recovery of walking in a big group of 200 stroke survivors, to see how many recovered walking and whether were there any ways we could predict who would recover their walking, I also have a strong interest in intensity or high dose motor training after stroke.
Dr. Kate Scrivener 18:13
So again, that started in my Ph.D. but has kind of flowed through my career. And, you know, I’ve done technology research to try and boost intensity, just doing really good motor training, but doing enough of it. And now, my research probably sits more in the community in terms of improving, walking, preventing falls, and improving life in the longer term after stroke.
Bill Gasiamis 18:49
That seems like an awesome space, improving walking and reducing falls. Falls tend to be a big setback for some stroke survivors. I know a couple that has had some falls and as a result, broken limbs and then seems to have put their recovery back several years and challenged their mental health space around their ability to become more active, especially if they’re older, and their ability to get back to life or overcome their deficits from a stroke.
The High-dose physiotherapy research project

Bill Gasiamis 19:25
What is hope? What’s the hope of this particular study that you’re doing at the moment? What are you hoping to find? And how do they work? I’ve got no idea how these research programs work. So as soon as you reached out and said, can you promote a research project that we’re going to talk about in a little bit because you’re looking for people to participate? I don’t understand how the process of it so where it starts from what happens in the middle and then what happens in the end. And then what might happen after that? Can you give me a bit of a rundown?
Dr. Kate Scrivener 20:04
Yeah, what a great question. It’s not easy. It’s pretty complex the whole thing. So typically, it starts from an idea. And an idea that kind of often develops over time and clinical experience as well as other research. And if we talk about high walk, the idea was, could we think differently about how therapy was accessed in the longer term after stroke?
Dr. Kate Scrivener 20:37
Because we just talked about that sometimes it’s very hard to access at all, and where it is accessed, it’s often long and slow. You know, you might see someone once a week, you know, on an ongoing basis. So we kind of wondered, would stroke survivors prefer doing a short, sharp kind of burst of training, allowing them to focus on it for a few weeks, but then get on with their life for a while?
Dr. Kate Scrivener 21:12
And would that boost of training, boost them enough that it would be worthwhile and allow them some time, you know, at that improved level of function? So we kind of came up with an idea. But then you have to prove that your idea kind of works in reality, and that stroke survivors think it’s a good idea, because there’s no point sitting in the university with your idea, but it’s not what people want to do.
Dr. Kate Scrivener 21:44
So then we did, I guess what you’d call a proof of concept study, where we tried it in a very small group of stroke survivors only five. And we just saw, could they do it? And what did they think of it? And perhaps the good news was, that they liked it, they attended. So it’s a 45-hour program in three weeks. When we tested it, they attended about 90% of the sessions and had a really good rate of practice or exercise within the sessions.
Dr. Kate Scrivener 22:24
So that bit went pretty well. So then we thought, well, this seems like a good idea, let’s run a trial of it. That costs money, so you then need to apply for money to do that. And we were very lucky that the Stroke Foundation awarded us a grant to do this research. So we’re at the point now, where we’re looking at High Walk in a group of 50 stroke survivors.
Dr. Kate Scrivener 22:56
And we proved it in a small group, we now need to take it out to a bigger group and see whether that holds. And whether it looks like in that group, there could be a benefit for people’s walking. And if there is a benefit, can we get an idea of how long that benefit will last after the program? And that’s where we are now.
Qualifications to sign up for High-Dose Physiotherapy
Bill Gasiamis 23:25
Okay. So how do you go about choosing the stroke survivors to participate? Are there some criteria that they have to meet, for example? How soon after the acute phase do they qualify? And then, are there any restrictions on age at the moment? Is it an open thing? Tell me a little bit about the participants.
Dr. Kate Scrivener 23:54
Yeah, again, what a good question. So there’s no restriction on age. For time post-stroke, we are looking for people who are more than six months after their stroke, but less than eight years, and we’re trying to the Strike Foundation to fund our research because it was in the longer term. So I think full credit to them for shifting the focus to the longer term.
Dr. Kate Scrivener 24:24
That is why there’s that six-month minimum and eight years was just a number to try and narrow our group down a bit. And that’s where research and real-life differ a bit because I think in real life, the program could be applicable, no matter the year’s post-stroke, but for research, you need a bit of a narrower group, at least the first time you kind of research something.
Dr. Kate Scrivener 24:56
The other criteria, so it’s really for people who can walk Look, but we’d like to walk better. And I look at it in a few ways based on kind of what people tell me the kind of common things, they tell me. I can do X, but I want to do Y. So they have a clear goal.
Dr. Kate Scrivener 25:18
And what’s motivating them to kind of sign up? The other thing that sometimes people will say is that something’s happened. So they might have had a fall. And they say, look, I had a fall, just feel like it’s set me back, and I want to get on and have a boost to try and get back to where I was.
Intro 25:39
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 recover? What things should I avoid? In case I make matters worse, doctors will explain things that, you’ve never had a stroke before, and you probably don’t know what questions to ask.
Intro 26:04
If this is you, you may miss 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 26:23
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, but they’ll also 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. Kate Scrivener 26:42
So probably that’s the two groups of people that are contacting us and expressing an interest in the program.
Bill Gasiamis 26:49
Right. So I recall being in outpatient therapy to get my walking a little bit better, a little finer after the initial month in occupational therapy and visit and physical therapy in the Royal Melbourne rehabilitation clinic at any Parkville. And one of the awesome questions that I got asked was, What do I want to achieve about my walking, etc? And I said I want it to be able to run and not to run marathons.
Bill Gasiamis 27:29
Although some crazy stroke survivors are doing marathons and ultra-marathons congratulations to them. I wanted to run across the road in case there was a car coming. That was it. I can’t run anymore in the way that I used to when I was playing soccer as an amateur soccer player, because of the leg response and it knows where it is on the ground. And all the stuff that goes with being that physical, that sudden shifting and moving is probably not conducive anymore to my abilities.
Bill Gasiamis 28:02
I can’t be that physical with my body. But I definitely can run across the road and get away from a car, or, you know, run two or three or four houses down the road. And not be too concerned about falling or tripping on a treadmill, I can run longer because there are no variables, and that’s consistent. And everything kind of just flows. And if you put the treadmill on a slow pace, you can get into a good rhythm.
Bill Gasiamis 28:28
And even though feels weird on my left side, it’s still relatively doable. But running for five minutes on the road in Melbourne on a footpath where there might be a tree root that’s cracked the pavement etc. Puts too many variables in it so I have to focus and notice the ground more than focus on my rhythm and running.
Bill Gasiamis 28:56
So it was awesome. When they said to me, what do you want to be able to achieve I like that aspect of your study is that it gets to kind of personalize it without really personalizing it, you aren’t making a specific program for everybody, but you’re asking them and that feels like it’s a personalized program specifically for them. Does that make sense?
Dr. Kate Scrivener 29:24
Yeah, 100% That’s the plan. And in fact, that’s really like working in the longer term and the community. Now for that exact reason that people you know, when you’re in the hospital immediately after your stroke. It’s life-shattering and you’re just getting on your feet again, whereas down the road, there will often be a clear thing that you just want to get better at doing or that’s limiting your life.
Dr. Kate Scrivener 29:53
And you can see how if you could do that, your overall life would get better I think that’s cool. And as a physiotherapist, we have to ask that question. And we have to listen to people in terms of what would be meaningful for their lives, I think.
Dealing with fatigue issues for research participants
Bill Gasiamis 30:14
Yeah, rather than you’re putting your perspective on them and overlaying your supposed thoughts of what’s best for that person, it’s probably never going to be right. Because you’re not that person. You don’t know what their life is like. One of the things I also picked up on that I liked about what you said is, that we’ve got on Episode 250, I interviewed with Dr. Amir Hadanny, and he’s a hyperbaric oxygen therapy researcher.
Bill Gasiamis 30:42
And he’s talking about doing what you said high dose, high dose, hyperbaric oxygen therapy, over a month, I think it was or maybe it was over 60 days, but what was interesting was the number of hours per day. And normally, I would say, well, a stroke survivor may not be able to do hours and hours per day, because there’s a fatigue issue and things like that.
Bill Gasiamis 31:12
Now, I’m not sure if it’s anecdotal, or whether or not your study of five people who you did the pilot on, got you this type of feedback. But I was wondering whether or not you guys noticed a difficulty with overcoming fatigue at the beginning of the program, and then the ability to deal with fatigue better as time progressed.
Bill Gasiamis 31:40
Because I know that exercise is amazing for the brain. And it helps to create new neural pathways. It helps to create serotonin and dopamine and all these amazing neuro processes. What did you notice the patients were like physically before and after their stroke? Hopefully, you noticed that they walking differently or more confident about their walking. What else?
Dr. Kate Scrivener 32:07
Yeah, the five people were pretty remarkable. And they were, you know, obviously very motivated people to try it. So they got through, actually, with very few reports of fatigue and really success. But that’s a chosen group of five, we are now broadening it out. And that’s something that we are interested in, we are not sure that the whole group that does the high walk program will be able to attend every day, or do the three hours a day.
Dr. Kate Scrivener 32:46
And that’s one of the things we’ll measure because we’re not sure what the exact right dose is. the right dose, the right duration, for people after stroke, so one of the biggest things is to know what they can do. And we also want to know what impact that has on the rest of their life. So if they’re coming to the program three hours a day, what does their kind of activity or participation in the rest of the hours of the day look like?
Dr. Kate Scrivener 33:19
So that’s yeah, some of the really interesting things will gain from this study, I guess we think, Well, I don’t know, you could probably do more than three hours, but we think three hours is a pretty big amount.
Dr. Kate Scrivener 33:34
And so we’ll learn in this round of the research what actually really sticks and perhaps what it should be, which then hopefully, if we get to go on, to do more research in this space, we’ll use that information to refine the program. I think that’s a really interesting idea about whether it helps build resilience or helps them feel less fatigued at the end of the program. We’re about to find out.
Bill Gasiamis 34:09
I imagine my personal experience and the experience of some of the other stroke survivors whom I’ve interviewed on the podcast is that at the beginning, especially for me, so we’ll say maybe around the 12-month mark, where I was probably starting to be the most active that I had been in the previous 12 months after, which was just before the brain surgery.
Bill Gasiamis 34:38
I noticed myself going for a bike ride so the bike ride was a gentle, mostly flat surface and then that might last an hour or two because I was taking my time, and then the rest of the day I would be completely wiped out. And the rest of the more afternoon would be on the couch watching TV doing nothing, and not participating in the day in any other way.
Bill Gasiamis 35:04
So that I could just be okay for the evening, usually that bike ride was happening on a Saturday. So it could be alright for the evening if we had dinner to go to or catch up with some friends or something. And then the next day would be a really slow start to the day as well, it seemed to have a residual impact, where I needed almost 24 hours to recover and feel better and another sleep in between.
Bill Gasiamis 35:32
As time went on, that decreased, so I needed to sit down and recover when I needed to be on the couch for the next eight hours. You know, too slowly I started to creep back. And now I can say that if I go for a bike ride, you know, perhaps I do need to just like anyone who’s had a massive bike ride. And for me massive is not what you know, a crazy mammal would ride you know, they wouldn’t be doing 100 kilometers a day be like if I’m doing 20.
Bill Gasiamis 36:01
For me, that would be massive. But that started to decrease. And over time, my recovery needed to be an hour or two. Now my left-side deficits were more pronounced to me. But there was this weird thing that was happening. So my deficits were more but my walking wasn’t worse. It felt stranger and worse, but it didn’t look stranger and worse on the outside.
Bill Gasiamis 36:27
So there was this residual, there was this physical fatigue of just standard muscle fatigue, but the neurological fatigue had decreased. And it seemed to be that I was now dealing with physical fatigue, muscle aches, and pains rather than the neurological fatigue and the impact that had on walking.
Bill Gasiamis 36:53
So the neurological pathways were getting less strained, I suppose. Or they were getting better, stronger, something perhaps the other, the other side of it, they were improving their ability to manage the load of pedaling and holding on with my left side. And then what that did to the brain. And then I wasn’t specifically someone able to use my cognition as, as I was at the beginning, where my cognition would also be the thing that I had to heal and recover and let rest, not just my physical part.
Bill Gasiamis 37:33
So I imagine because I’m because I’ve got like a window into the future. And I know your page, your participants, I imagine that some of them, at least might notice something like that. And, and I hope they do because that’s going to be an amazing thing to be able to iterate to somebody in a conversation.
Bill Gasiamis 37:56
And to specifically know, hey, I know it’s hard, and it sucks, and you hate it right now for some people. But if you do this, you’ll notice these types of improved improvements are what other people have reported. the, with physical activity.
Dr. Kate Scrivener 38:14
Yeah, we’ve started in Sydney this week. So it’s been a great week to meet the group of stroke survivors who are participating in Sydney and have come in for their assessments. And I’m they’re selecting to participate. But they’re all so open to the idea of the three-week, you know, 45-hour program and just giving it a go.
Dr. Kate Scrivener 38:42
Some are very confident they’ll be able to do it and, you know, have access to some pretty intensive therapy now or in the past, some are not sure but are so committed to giving it a go. And, you know, that’s, we’re very grateful for that because that helps us to answer this question within the research.
Emotional, physical, and psychological support after the High-Dose Physiotherapy
Bill Gasiamis 39:05
I know with research and funding for research, there are very strict parameters in which you can operate. And I get it. I’m wondering though, if some of the stroke survivors that I’ve met, will go through the process of giving themselves a timeline and deadline and be overconfident in their abilities.
Bill Gasiamis 39:22
And then they won’t meet that deadline or hit that particular personal goal and it’ll affect them negatively, psychologically, and emotionally. Is there any part of your study that kind of enables you to support people after the study or the project ends if they kind of take a little bit of a downturn emotionally or physically or actually, psychologically as well?
Dr. Kate Scrivener 39:53
Oh, Bill, I hope that won’t happen. So, for anyone who’s in the program, we will follow them up for six months. And for the people who are in so, there are two groups. Because it’s a trial, there’s the group that will participate in the high walk program, and there is a control group or a group that will do their usual activities.
Dr. Kate Scrivener 40:20
For the group that participates in the program, I guess we’re at that stage where we’re not expecting anything negative to happen. But, if it does, or if they’re demotivated, we will deal with that, within the parameters kind of that we can in the research, probably the trickiest part is most people are signing up because they’re keen to try this kind of program.
Dr. Kate Scrivener 40:51
And if they are allocated to the control group, they’re a little bit disappointed. We are, I will say, you know, we are not stalking anyone doing any of their usual exercise or therapies. And at the end of the six months, we do offer that group kind of access to the program.
Dr. Kate Scrivener 41:12
So it’s only one session, but we’ll still go through the program with them, and give them some resources to try that program at home if they wish to. So we are just very clear to people if they are going to participate that, you know, there is a 50-50 chance of trying the program or not.
Bill Gasiamis 41:36
I like it, okay, now, the reason I asked is because I just experienced being able to sort of facilitate people through stroke recovery as a stroke recovery coach, for example. And then some other people came to me after that stage when they thought they were further along in their recovery. And then they found they weren’t, and they just took a negative view to it thinking that that meant that, you know, things were not going to be great from now on, which is not true.
Bill Gasiamis 42:11
And then it’s like working with them, to make them feel like well, you know, deadlines, and that kind of stuff. They’re not useful for anything, a hard deadline, especially that in 12 months, I’m going to achieve X is setting people up for failure.
Bill Gasiamis 42:27
Not that you shouldn’t have a goal but I think the date should be flexible. And to say that it must happen by January 1, 2024. is setting people up for a potentially negative experience. If they’ve set their sights on something. They’ve got their heart set on it. Everything is set for that date, and then they don’t get there.
Dr. Kate Scrivener 42:50
Yeah, I love that. Because maybe I need to make that clear because it is a three-week program. But do we expect everyone to change in those exact three weeks? Probably not in fact, it might spur them on to positive things in the weeks, and months afterward, which is why we are following them kind of along the way.
Bill Gasiamis 43:17
So that’d be lovely to learn as well. So did it create a foundation for them and give them boosting confidence? And then as a result of that, did they find their path toward going to the gym for example? Did they sign up for the gym? Or do they meet a walking club? Or what did they do that happened after that would be amazing information for you guys to discover after the initial exercise program was completed. So is this a multi-site study that’s occurring?
Dr. Kate Scrivener 43:52
That’s right. Yes. So we have two sites at the moment, one in Sydney and one in Melbourne. As I said, we’re running in Sydney, literally right now. And then we start at the Melbourne site in the first week of August this year.
Bill Gasiamis 44:10
And how’s the recruitment process going? Have you filled the crowds, the numbers that you need for the study?
Dr. Kate Scrivener 44:17
We have almost filled the study in Sydney. We are recruiting very well in Sydney. We still have places available for the Melbourne booster starting in August. So if anyone is listening from Melbourne, we are very interested in hearing from you if you think you might like to be involved in this research opportunity.
Bill Gasiamis 44:41
I’m very familiar with the Stroke Foundation. I’ve done a lot of volunteering for them over the years. And although it’s probably been since COVID, that I’ve been not as active as I used to be. I was just curious about how they’re involved with the program other than funding it. What happens when somebody says to you “Here’s some money, run your research program” And then what do they do? How do they sort of stay in the loop? Do they? I know the stroke foundation wants to be in the loop because that’s their key criteria are to help people overcome a stroke and to support people with stroke deficits, how do they specifically get involved and stay involved?
Dr. Kate Scrivener 45:25
They are very supportive. And even with things like trying to notify the stroke community, that this opportunity is available, they will work with us for that. But really, they give me the money to do the work, and then I’m accountable to show them you know, what we were able to achieve and answer with the research. And I need to do that. And show them hopefully, that they’ve got good value for money out of this project.
Bill Gasiamis 46:00
Well, they’re gonna learn something either way, and it’ll be good value. So is there someone that you deal with in this space in the Stroke Foundation? Is there somebody that sits in a room that does this job with researchers that they’ve supplied with funding?
Dr. Kate Scrivener 46:21
That’s right, yeah. So they have a research office and very lovely people who support us along the journey, once we do get the funding.
Bill Gasiamis 46:31
Yeah. Brilliant. So there’s a whole community coming together to support this project? To find out one way or another, some answers as to whether or not this particular what do we call it? High Dose program is going to have outcomes, and then those outcomes do these studies then become other studies? Or do they kind of pause?
Bill Gasiamis 47:01
What happens once you have completed your study, you have reported it, and you’ve told people what the outcomes are? I imagine it will hopefully published somewhere with your findings. Tell me about that phase of the program.
Dr. Kate Scrivener 47:14
Yeah, that’s exactly right. So you want whatever we find, we want to make sure that that’s out there for stroke researchers and clinicians. So we would try and publish the results. This is, you know, one of the steps and I guess whether it goes anywhere after this depends on what we find, you know, what we need to know is that this bigger group of stroke survivors, what do they think of this kind of training?
Dr. Kate Scrivener 47:48
Does this kind of training meet their needs? Or not? Do they participate in it? What does it do to the rest of their life, then we’d like to see a hint that this program is effective in improving their walking.
Dr. Kate Scrivener 48:09
So I guess until we know, how successful it is, know, the outcomes will either it will perhaps stop there, and we’ll have to rethink or if it is successful, we’ll refine the program based on what we find and the stroke survivor’s experiences. And then we’ll try to, investigate the program in an even bigger study, to know the effectiveness of this kind of program. And to understand how that effect changes or tracks over time.
Bill Gasiamis 48:50
One of the criticisms, criticisms of science-based research projects is the amount of time it takes A for this study to occur. I mean, it’s all understandable. But this is kind of one of the criticisms that I’ve sort of become aware of the time that it takes A to create the study, raise the money, do the study, and report on the outcomes of the findings of the study.
The next phase after the study
Bill Gasiamis 49:13
And then the applications of the study. What happens is that we have the outcome that we desire, a positive outcome, and people love it. And now you’ve got a tool that’s proven scientifically, to create better outcomes for stroke survivors in walking and not tripping over. How, does that become then applied to the physiotherapy field? Is there a quick path to application or how does that happen? What’s the next stage like?
Dr. Kate Scrivener 49:55
I love your idea. I love your positivity that we’re going to find that it works. If it does work. The nice thing about this is it is really like it is a set program. And there are guidelines and resources already about how to conduct the program because we’re starting next week in Sydney.
Dr. Kate Scrivener 50:14
So if we do find it so effective, the plan is to make all of those resources freely available to physiotherapists. So if they want to run the program, they can run it. I know it is, look, the time from research to clinical practice is long. The challenge is with something like this where it is a real shift in clinical practice, it’s a different way of doing something.
Dr. Kate Scrivener 50:46
It is hard to do that unless you have the research behind you. And we don’t know that this is the right model yet. You know, we do need to refine it. With the research. I hope we’re on to something or at least on the right track. We’re going to find out.
Bill Gasiamis 51:09
Yeah, my instinct tells me that you are my experience tells me that you are my conversations with other stroke survivors who, “fall through the gaps” and then end up with a little physical therapy says that you’re onto something. And specifically, what that something is, is I think going to be positive, but how positive and what exactly data you get out of it, that’s going to be the exciting part.
Bill Gasiamis 51:39
To determine what the data says, as opposed to what say, even if it’s 10, very, just very broad conversations that I’ve had about it with people which are anecdotal, but still positive, in that the more physical therapy they get, the better the outcome.
Bill Gasiamis 52:00
And I just know that in that space in the recovery from stroke space, if the people are not suffering with debilitating fatigue, because of the deficits, and they are seeing that decrease of fatigue, and the increase in the sustainability of exercise and fitness level and all that kind of stuff, I just know that that’s having a positive impact on the brain in every way, shape, or form.
Bill Gasiamis 52:32
So I believe that you are going to get some amazing results out of it. And we will learn a lot from it. And that’s the reason why I thought, you know, when you reached out and you say to me, can we promote this, I’m all for it. And I think we need to get as many people as possible in it because that’s what my community is telling me. They’re telling me that that’s where they’re struggling to get resources.
Bill Gasiamis 52:57
And if a physiotherapist in the local area gets access to the results of this study, then can implement it locally. That will be even better, because some of the challenges that stroke survivors face is accessing resources locally, and they need to go from a one-hour travel every day. And that adds to the three hours and then one hour travel back. And then that becomes a real issue. So I like everything about this study. Hopefully, my questions are reasonable.
Dr. Kate Scrivener 53:34
You’ve got great ideas, Bill. I mean, for me, the long-term dream is there’s almost, I don’t know where these places you can go. But if you’re a stroke survivor, and you’re saying my walking, I’ll use walking as an example, it could be anything, let’s say it’s walking, my walking needs a boost. There’d be a place to just self-select, and go and do the program.
Dr. Kate Scrivener 54:00
I’d love it to be free. But you know, we’ll work that out. Let’s say that it works first. If we can get the duration and the dose right to suit stroke survivors, we know that if they went for this boost, it would improve their walking. I just think that’d be great.
Dr. Kate Scrivener 54:24
And then imagine if in six months, 12 months, two years, whenever you needed it again, you could go and self-select again. That’s kind of the idea. Could you have access to a short-term boost when you need it?
The Recruitment Process in Melbourne Australia
Bill Gasiamis 54:39
Yes. I love it. Let’s talk a little bit about the recruitment process in Melbourne. What’s the best way for people who are in Melbourne to get on board with this program?
Dr. Kate Scrivener 54:56
so there’s a trial phone number and then there’s The same email address, which is my email address, so you can email me, and let me know that you’re interested. And typically, we’ll send you some information, or have a chat with you over the phone and just tell you a little bit more specifically about what’s involved and what the commitment would be from you. And then there’s absolutely no pressure, you get to think about it and see if it is something that you’d like to be involved with.
Bill Gasiamis 55:28
The location where this is all going to take place is Melbourne. Do you know where that’s located?
Dr. Kate Scrivener 55:33
So it’s actually in Tarneit. And I say it that way because I think it’s not speaking to other researchers in Melbourne. It’s not a typical research site. But I know that there are many stroke survivors in the west of Melbourne down to the Werribee Geelong area.
Dr. Kate Scrivener 55:56
So I’m hoping that it’s an attractive thing for people who are in the west of Melbourne. Though we won’t limit we definitely won’t limit it. We have people who are coming, to see us for the program. And I think we might have one or two people who have agreed to cross Melbourne and come over to the west to be part of the research as well.
Bill Gasiamis 56:22
Fantastic. Well, that’s good. Well, I appreciate you reaching out. And thank you for chatting with me about this project and program. I would love to know the outcome of the research when the time’s right. And I wish you all the best with it.
Dr. Kate Scrivener 56:41
Thank you so much, Bill. I appreciate your time and positivity about the research and I will keep you updated with the results.
Bill Gasiamis 56:51
Well, thank you for joining me on today’s episode to learn more about my guests including links to their social media and other pages. And to download a full transcript of the entire interview, please go to recovery after stroke.com/episodes. If you’d like to support this podcast, the best way to do it is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 57:16
If you’re watching on YouTube comment below the video I look forward to receiving comments, and I love responding to all people who comment on my videos like this episode to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, come and join me on the show.
Bill Gasiamis 57:40
The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor. Or like Kate work in a field that supports stroke survivors go to recoveryafterstroke.com/contact fill out the contact form and as soon as I receive your request, I will respond with more details on how you can choose a time that works for you and me to meet over zoom. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 58:12
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.
Intro 58:29
All content on this website at any linked blog, podcast, or video material controlled by 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 58:52
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 59:20
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Intro 59:36
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1 hr 2 min
June 26, 2023 How To Support Stroke Caregivers | Tsgoyna Tanzman
Tsgoyna Tanzman is the author of the Caregiver’s 12 Week Journal & Workbook designed to help stroke caregivers support themselves while caring for others.
Previous Interview with Tsgoyna Tanzman on Episode 236
Hope After Stroke
When I had my stroke, my wife got no support and no explanation. I made a course for the people in that position, written from the survivor side of it: How To Help Someone After Stroke. It costs a dollar.
Highlights:
01:01 Introduction
04:48 The death rate for caregivers and the challenges they face
17:19 Privacy issues in the hospital
24:35 There’s no line between the caregiver and stroke survivor
29:54 The Book Hope After Stroke is for anyone and everyone.
37:03 How traditional news channels impact mental health
48:53 The importance of having a dream break
54:24 A shift in priorities, value, a new purpose
1:02:13 A shift in a caregiver mindset
1:17:57 How to get Tsgoyna Tanzman’s books
Transcript:
Tsgoyna Tanzman 0:00
I’ve worked with a gentleman who was caring for his mother. But he was a guy in his 70s who was living with his mother. And he was like, I am the only one, I have to take care of her. And as we worked for a certain period, we got to find out the value that he was finding from that.
Tsgoyna Tanzman 0:18
And he switched it to, I get to take care of my mother. And I get to give back to her, I get to appreciate her in a way and it just shifted the stress level for him and the resentment that he had towards other people. And we have to do it in a context that feels real. We’re not going to say to somebody, Oh, I get to, you know, wipe his ass. Yey, that’s so much fun, right?
Intro 0:48
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.
Introduction – Tsgoyna Tanzman
Bill Gasiamis 1:01
Hello, and welcome to episode 256 of the Recovery after Stroke podcast. Rejoining me on the podcast today is Tsgoyna Tanzman, who I first interviewed on Episode 236, which was titled Some Much-needed Hope After Stroke, focusing on stroke survivors. Whereas today’s conversation is all about the journey of the caregiver. Tsgoyna Tanzman welcome to the podcast again.
Tsgoyna Tanzman 1:29
Yeah, I’m so happy to be here.
Bill Gasiamis 1:33
Me too. We had a lovely chat last time. Last time you were here. It was episode 236, I believe. And we spoke about a holistic approach to recovery. And we spoke about stroke survivors. And I’ll get it out of the way early, I bragged a little bit about how you’re the real deal, you get it, you understand what stroke survivors are going through.
Bill Gasiamis 2:08
And that’s rare to come across even somebody who is seasoned in their support of stroke recoveries in the work that they do, because they’ve never had a stroke, thankfully. Often, they don’t particularly understand some of the more nuanced issues that stroke survivors go through. And when we spoke for Episode 236, I labeled the podcast “Some Much Needed Hope After Stroke”.
Bill Gasiamis 2:46
And we must provide hope after stroke, we provide a vision of the future for what recovery could be like, and we give people the opportunity to get through the really tough times of acute stroke recovery, and early stroke recovery. And then we hopefully support them and guide them gently through all the stages and then say a decade later, they come to the other side.
Bill Gasiamis 3:15
And they may have been I’ll use a pretty Australian term “banged-up” because of stroke, you know, they might have had deficits that they have to deal with might have had vision issues they might have who knows what they’ve got to deal with. But still, a decade later, life might have moved on and continued.
Bill Gasiamis 3:36
And while this is a recovery after-stroke podcast we’re talking about stroke survivors and their recovery, what we don’t do enough of is talk about caregivers. Caregivers get the harder part of the deal in some scenarios, I believe, because they have to put their own life on hold and care for somebody without any skills, any training, any degree, or any certificate on how to do that.
Bill Gasiamis 4:15
At the same time, they have to handle their emotions, their emotional state, and their own needs. And often they neglect all of that they let go and all they do is focus on the stroke survivor.
Bill Gasiamis 4:33
And I think there’s a statistic about but I don’t know the number exactly, but I think it is the people who are less likely to pass away after caring for an ill person in their family is the caregiver.
The death rate for caregivers and the challenges they face
Tsgoyna Tanzman 4:48
Yes, it’s true. Yeah. And there are some pretty sobering statistics about that right? 30% of caregivers die before the person that they’re caring for. And they have a higher rate of death like a 67% higher rate of earlier death than the average population that’s not in a caregiving position.
Tsgoyna Tanzman 5:21
And I will tell you that when I have said that to some caregiver groups, I have had, some people get pretty angry at me. And they didn’t want to hear it, and I think one of the reasons they didn’t want to hear it is because they felt like, there was no way out of that. And I believe that there truly is, they don’t have to be a statistic.
Bill Gasiamis 5:51
Yeah, burying your head in the sand doesn’t work, regardless of what the situation is, whether you’re denying that you’ve had a stroke, or you haven’t come to terms with it yet, whether you’re denying all the things that you’ve put on hold your entire life to care for somebody who’s had a stroke.
Bill Gasiamis 6:08
Burying your head in the sand is not going to make it go away. I think it’s doing a disservice to you to bury your head in the sand and pretend that you’re not struggling because you’re a caregiver, and it’s okay to say if you are.
Tsgoyna Tanzman 6:26
Yeah, it does not help anyone. But I think that the resistance to acknowledging that is so fearful for some people, especially because, they’re fixed in their thinking about how and what they are expected to do as a caregiver.
Tsgoyna Tanzman 6:46
And, interestingly, you said people put their life on hold. And that’s kind of true, but not entirely true. Because the caregiver’s life goes on. There are responsibilities, there are things that are building up and not getting done. And all of that adds to an enormous level of stress.
Tsgoyna Tanzman 7:09
And I think that is one of the things that becomes a challenge. And so when you say to put their life on hold, you are meaning things like what caregivers do, which is not going to their dental appointments, not making their doctor appointments don’t get their hair cut, even simple things like that. Don’t attend to any of those personal self-care things.
Bill Gasiamis 7:38
Their dreams and desires perhaps.
Tsgoyna Tanzman 7:43
Yeah. Their dreams and desires. That’s why they’re not making it to a dental appointment when they’ve got a serious toothache. Yeah, dreams and desires are way at the bottom of the list.
Bill Gasiamis 7:59
I noticed that. I noticed that in my mother-in-law, who had a long time caring for my father-in-law. She went on an emotional roller coaster of feeling guilty about taking time out for herself because of the demands of her husband’s situation.
Bill Gasiamis 8:20
And then also felt guilty because she was frustrated or angry at the situation or him from time to time. And she didn’t have a lot of outlets, she didn’t have a lot of ways to I suppose deal with the emotional rollercoaster.
Bill Gasiamis 8:44
And she was very committed to supporting and helping him. But there was no one committed to supporting and helping her and even if there was, I’m not sure that she would have accepted the help and support.
Tsgoyna Tanzman 8:59
And that’s a point that I hear all the time, and you describe this kind of teeter-totter version of balancing between guilt and resentment, right, guilt and anger, guilt and then overlaid guilt that you were angry or resentful, right? So we get very meta here.
Tsgoyna Tanzman 9:20
And it seems like there’s no way out. Most of the time, in a situation where there’s a caregiver and or survivor looking people are always asking about the survivor. How are you doing? How are you coming along, and then the person who’s providing all their support, whether it’s the driving the feeding, the laundry, the transferring, the setting up of appointments, dealing with the insurance, getting the benefits.
Tsgoyna Tanzman 9:52
All of that is dismissed, and unappreciated often by the person, you know the survivor as well as any of the family members. And, you know, nobody is actually, I’ve heard caregivers say, nobody has ever said, How are you doing? How am I doing?
Tsgoyna Tanzman 10:15
And just want the ability to answer that question. And you’re right, a lot of times caregivers then take on this, nobody can do it like me. And that prevents them from moving on with any of their activities, whether it’s even a walk outside because they’re going to put their loved one in the care of somebody else.
Tsgoyna Tanzman 10:49
And on the caregiver’s part, there’s that “nobody can do it like me” I know exactly how my loved one needs to be toileted, fed, and dressed, and they won’t respond to you, the only person they’ll respond to is me. And that unwillingness to experience their discomfort in letting somebody else try something.
Bill Gasiamis 11:16
Yeah. And also, what I saw from the other end was my father-in-law saying, nobody else is going to come in the house to help. Because he was embarrassed because showering and toileting is a difficult thing to go through.
Bill Gasiamis 11:32
So he was put in that situation, he had no choice when she passed away. And even then, he wasn’t happy with it, you know, he, so to speak, went down kicking and screaming in that, you know, he tried to resist that as much as possible, it was his biggest fear.
Bill Gasiamis 11:53
And he overcame that fear when she was no longer around, and he was stuck. And he had no other way. You know, the family supported him as much as possible. But all the family members who supported him had their own lives, and I didn’t live in the house with him.
Bill Gasiamis 12:12
They’re all adult, people who work and have kids and do all that kind of stuff. So there was a real lack of support. And then there was the government, caregivers that made the transition into the house to support when they could, and they’ve been there for quite a while, and there’s been some adjustment, but that’s worked out.
Bill Gasiamis 12:36
But even then, when I noticed that even when caregivers, the paid kind have to be changed, or they’re different, or they get sent elsewhere. There’s even the same resistance to losing somebody who was a caregiver who knows the routine. And now there’s a new person and oh my gosh, now I have to tell the new person want to do it again.
Bill Gasiamis 13:02
So there were a lot of underlying things, making it very difficult for my mother-in-law to change this system and you know, she was in her 70s. So she didn’t have a lot of energy to fight and argue and all that kind of stuff. She also didn’t have the resources to do that. She didn’t have the support to do that.
Bill Gasiamis 13:25
We didn’t know that she needed to do that. It was such a challenging time. And now I remember often what it was like for my wife to go through the caregiving role with me and how difficult it was. And even though I didn’t need toileting and all those things. I didn’t make it easy, because I also didn’t know what I was doing. I had no idea what I was doing.
Tsgoyna Tanzman 13:51
Yes. And then we add sleep deprivation to that you know, whether it’s the stroke survivor that’s not sleeping through the night that’s keeping the caregiver up or just that every you know, both parties are having difficulty sleeping, it’s different. These are new adjustments. It is not the preferred choice for sure. Whether it’s having a caregiver shower you and bathe you and help toilet you are not the preferred choice, especially if a person has always been very private.
Tsgoyna Tanzman 13:53
And, yet there’s a great deal of surrender that takes place. A lot of times that surrender takes place in the hospital from the very beginning. You know, people are walking into your room I don’t know about in Australia, but here in the States I was very aware that you know, for the most part, professionals that are entering the room, don’t knock On the door even, it’s as if, like, there is no privacy.
Tsgoyna Tanzman 15:06
And, you know, from the nursing staff’s point of view, they’ve seen it at all. But a human is being there that has not been readily exposing their behind to people and having them wipe them. It is pretty damn humbling.
Bill Gasiamis 15:25
And I have a story about that. I went into surgery, I came out of surgery. And of course, one of the first things I want you to do is go to the toilet and move your bowels. And I couldn’t move my bowels because it was, you know, things weren’t working or whatever it was a couple of days after surgery.
Bill Gasiamis 15:46
And they gave me some oral what we call oral laxatives. And of course, they kicked in at some point. And when they kicked in, I couldn’t walk yet. I hadn’t been to rehab, I couldn’t walk. So I was in a wheelchair. And I was pressing the buzzer pressing the buzzer. And the nurse was busy elsewhere. And then I had to go.
Bill Gasiamis 16:12
And there were moments left, you know. So I dragged myself as much as I could out of my bed, which was a big no, no, I learned later, dragging myself out of the bed, positioning myself in the wheelchair, and pushing myself towards the toilet, which was just at the end of my bed, got to the toilet, opened the sliding door, went in. And I think I hadn’t started to move on to the toilet yet and I got busted.
Bill Gasiamis 16:43
The nurses came and said, Hey, what are you doing? I said look, I had to go to the toilet. I pressed the buzzer you didn’t answer, I understand. I needed to go so here I am. So just get me up here and let me do my thing.
Bill Gasiamis 17:02
And they said, no we have to stay in here and watch you. And I said what do you mean? No one told me that, I didn’t sign up for that, get out. No, we have to stay and get out. No, we have to stay. Please, please, please, I will not move from this location.
Privacy issues in the hospital
Bill Gasiamis 17:19
I will sit here I’ll do my thing. Just stay outside the door just please stay outside the door. And as much as I was busting the need to go to the toilet went away. Let me tell you immediately when somebody said to me, I’m gonna sit here and watch. Yeah. I mean, what do you talk about in those moments?
Tsgoyna Tanzman 17:45
Yeah, there’s so much about that story. It’s so interesting. First of all, there’s sort of a well-known joke, that if you’re in the hospital, and you want an hour of quiet, just press the call button. I’m sorry, to all the nursing staff out there, I do know that you have a very, very difficult job. But that does seem to happen a lot.
Tsgoyna Tanzman 18:13
And that’s a big complaint. And the whole thing about toileting on your own in the hospital. The greatest number of falls occur in the bathroom, and it’s the worst place to fall. Because the surfaces are hard. It’s most likely to have a head injury in that case. And you know the hospitals want to protect your safety.
Tsgoyna Tanzman 18:36
But yeah, I mean, that’s the first place you learn like, Wow, no privacy, all humility is gone. And everybody’s talking about how big your bowel movement was how many, like, All right, like you might as well just share everything get to know me. So, you know, there’s an interesting thing that just happened. I spoke with a caregiver about this man was in his late 80s.
Intro 18:36
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. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 19:31
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. 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.
Tsgoyna Tanzman 20:09
He mowed his lawn working up until the time of his stroke in his late 80s. But he had a massive stroke he had global aphasia. So he couldn’t speak at all. He was paralyzed on one side, it was a severe stroke that affected every modality of communication and function. And he had some wounds on his lower back from being in bed for a very long time.
Tsgoyna Tanzman 20:40
His wife was in her late 70s, she was the only one he would allow to help. But she physically she would get in the shower with him. But he was a big man and slippery and resisted the shower, complained and fought and battled. And so when I started working with him, one of the first things I said was, okay, let’s give up on the fighting about the shower.
Tsgoyna Tanzman 21:10
Let’s not have him shower, don’t even bring it up for a while. And then, in the absence of that contentiousness family members started to get a little bit curious. And one of them said, Well, maybe he would like it more if it was warmer, right? So they brought in a little heater. So when he first came into the bathroom, it was better.
Tsgoyna Tanzman 21:35
And then they realized they had an even smaller shower. And he liked the smallness, like, the confining space. So it’s so fascinating. It’s like, what can we learn? Why is somebody so resistive? Can we take the time to find out what the problem is? And can we make that better?
Tsgoyna Tanzman 21:58
But when those caregivers are in that contentious state, you know, they get frustrated, it doesn’t work for anybody. So that’s just an example of that. But yeah, it’s not the preferred thing, to have somebody else shower you and toilet, you. But as we can see, when there was no other option, he did start to accommodate.
Bill Gasiamis 22:26
Yeah, I mean, it’s a big deal, you’ve lost all of your identity. And, now, all of your privacy happens, all at the same time. And it’s a big adjustment. I mean, moments ago, you had all of those things, and now you don’t, there is going to be a time of adjustment. Same with the caregiver, the caregiver, had a functioning family member, and now they don’t, there’s gotta be some adjustment.
Bill Gasiamis 22:58
And complications in the relationship may have just got more complicated, you know, all sorts of things. So I understand that whole difficulty in the complexity, I just feel like. And that’s why I love having these conversations because there’s more awareness needs to be raised.
Bill Gasiamis 23:19
And I’m not sure whether the caregivers who listen to this or the stroke survivors who listen to this will learn something and then feel like they can make a change themselves and accept something a little better, or look out for aid for each other, or whatever.
Bill Gasiamis 23:38
But maybe this type of conversation brings things into people’s awarenesses that we weren’t in our awareness before because, in a difficult time like stroke, a lot of things that should be in our awareness may have an even entered.
Tsgoyna Tanzman 23:58
Absolutely. And I think what happens is that you’re in a crisis. And so you immediately go to the doing part without examining your thoughts or your feelings. And often you’re fueling the doing part, whatever actions you are from feelings of resentment, feelings of guilt, feelings of fear, feelings of uncertainty, and none of those are the optimal fuel for the long-term kind of thing.
There’s no line between the caregiver and the stroke survivor – Tsgoyna Tanzman
Tsgoyna Tanzman 24:35
So one of the things that I decided to do after I wrote my book, Hope After Stroke for Caregivers And Survivors, which by the way, when I was writing the book, some of the editorial criticism, so to speak, we’re like, Well, who is it for? Is it for the caregiver? Or is it for the survivor? And I keep saying it’s for both like you can’t uncouple them, even people that are survivors that don’t have a partner that’s living there, there’s somebody that’s involved in their care in the beginning.
Tsgoyna Tanzman 25:15
And it’s like a dance I said, In the beginning, the caregiver is taking on more of the role. But we want that caregiver to turn back the keys to your life to that survivor, in the best way possible. So that the survivor is making the decisions, calling the shots, asking the questions, being involved in his or her recovery, and finding their way. So it’s a little bit of a dance with one leading, but then switching that off.
Bill Gasiamis 25:52
Ideally, yeah switching that off.
Tsgoyna Tanzman 25:55
Ideally, and I want to say something about that too because caregivers, in their desire to help the person, may often thwart the recovery because they’re putting the brakes on things that look to them, dangerous or compromised, or they that this survivor shouldn’t be doing their loved one shouldn’t be doing.
Tsgoyna Tanzman 26:25
And it takes a lot of courage. I mean, it helps if that person, those people have ever raised small children because those small children will. And that’s not to diminish what the survivors like, but those small children will venture out, they will try and climb on something, they will try and do something that scares the person you know, or when they get their driver’s license for the first time. And it scares the parent, in the same way that it scares the caregiver.
Tsgoyna Tanzman 27:01
They’ve suffered trauma, by the way, the caregiver has seen the survivor with all the tubes coming out with all the grim reports, with all the devastating things they have suffered from their trauma. And nobody deals with caregiver trauma, nobody, because you just jump right in and start doing it. But going back to this another thing is that inadvertently, to protect a loved one, they may thwart the recovery by not allowing them to give them extra time to transition or to speak and not speak for them.
Bill Gasiamis 27:47
Yeah, that’s, it makes complete sense. Adult parents do that with their kids as well, you know, I’ve certainly been the kind of parent who over-worried about something that was, you know, difficult, and as a result of that, probably put the brakes which was my intention to put the brakes on my child’s task or whatever it was.
Bill Gasiamis 28:19
At the moment, I time, not realize what the deeper issue down the track might be if I continued to play the role of putting the brakes on one of the tasks that my child wanted to do, which was quite and quite dangerous in my eyes.
Bill Gasiamis 28:41
And I see that with some of the people who I coach the dance between their caregiver and the stroke survivor, and sometimes the stroke survivor being unwilling to take on the next part of the journey and being comfortable to let the caregiver overservice if you like.
Tsgoyna Tanzman 29:07
Absolutely. And there’s technically a name for that. It’s called learned helplessness and learned dependence. You know, and, you know, we see that with dressing with eating with doing activities of daily living, that a person we want to reestablish their independence and create that but sometimes, for both reasons.
Tsgoyna Tanzman 29:36
It’s hard for the survivor to do something and, you know, they complain like, why aren’t you helping me and it’s hard for the person to sit back and say, this is what help looks like right now. Letting you do this on your own figuring it out.
Hope After Stroke by Tsgoyna Tanzman

Bill Gasiamis 29:54
Yeah. The first book you wrote, Hope After Stroke was the one that we discussed on episode 236. And you said there was feedback about who it was for. And there was a difficulty in people who were outside of your world, the amazing work that you do.
Bill Gasiamis 30:20
And my world, the stroke, surviving world to kind of understand who is a book for Hope After Stroke, it seems such a broad statement if we’re going off of Hope After Stroke, but the reality is, it’s for anybody and everybody. And if you just take the word stroke away, you can just put some other words in there. And realistically, the lessons from that book apply to anybody in any part of life.
Tsgoyna Tanzman 30:53
Yeah, I’ve heard that from so many people that have read it.
Bill Gasiamis 30:56
Yeah, they are right? But the problem with the work that you do, and the work that I do is we work with stroke survivors often. And we need to find our market. So what we do is we tune the wording, so that somebody who’s been in the situation of stroke, can very easily understand that it’s definitely for them.
Bill Gasiamis 31:19
That’s the challenge that I had with my book. Okay. So my book called “The Unexpected Way That A Stroke Became The Best Thing That Happened.” Okay, but it’s not about stroke. It’s about general things that happen in life for everybody, whether they’ve had a car accident, or a cancer diagnosis or whatever, a heart attack.
Bill Gasiamis 31:41
The lessons and the way that all the other stroke survivors whom I interviewed got to that stage was they went back to some basic fundamental things that people go back to when they need dramatic change in their lives.
Tsgoyna Tanzman 31:59
Yeah, you’re right. And these catastrophic events, it doesn’t matter whether it is a stroke, or whatever. But there are some fundamentals like you say, there are fundamentals. And there are things in my book that are very specific to stroke the language, for example, that you need to know because, as you well know, I’ve got a crash course, in medical language.
Tsgoyna Tanzman 32:23
As well as you I got a crash course, as soon as you enter the hospital, and all of a sudden, you know, are learning about brain anatomy, which, you know, five minutes before that was not on your game plan, right? Suddenly, you can read an MRI scan.
Bill Gasiamis 32:39
Yeah, you have to be able to communicate with the neurologist and the surgeon and this guy and that guy, and you need to be up for the task. And that’s kind of what the book does helps us to get up to the task of understanding your book, up to the task of understanding the things that we need to understand to specifically deal with stroke.
Bill Gasiamis 33:02
But if we just take out the anatomy of the head and replace it with an anatomy of the heart, and right heart attack instead of stroke, it’s a book for everybody. But it’s never going to be made like that you can’t build a book like that. That being said, there was another book that came from this, there was another book that this sport that I bought off the stroke spawned, and yes, which one is that? And what was the purpose of that? How does that fit into the picture?
Tsgoyna Tanzman 33:34
Yes, I’ll show it to you. It is for the caregivers, a 12-week recovery book, a 12-week journal, and a workbook. And the reason I wrote this is because I saw such a need for caregivers, to have some kind of a grounding element. And I knew it had to be something quick because they don’t have time to sit there and read. It’s not that kind of book.
Tsgoyna Tanzman 34:07
It’s very experiential. I mean, it starts by saying, the vast majority of it is a daily journal, which looks kind of like this. And it asked questions like, well, I love this because it works both ways for both the caregiver and the survivor in a certain way. It starts with the day, the date the month, and the year as a basic orientation.
Tsgoyna Tanzman 34:37
Because what also happens in recovery is people will say, I’m not making progress, right? Because they’re now three months down the line, but they forget what those first two months were like. So this is kind of a historical record, right? But it also starts with orientation. And let me You know, I mean, I think one of the dumbest questions that patients are asked when they’re in the hospital patients, what day? Is it? Because who cares?
Tsgoyna Tanzman 35:10
Like, I mean, every day is the same when you’re in the hospital. I think it’s the dumbest question to look at orientation. But once you’re out of the hospital, there is some regularity there is value to knowing what day it is.
Tsgoyna Tanzman 35:27
And did I take my meds? Is, asking the caregiver did I take my meds? Did I take my vitamins? Did I check my vitals? If you know, very often, that caregiver may also have a medical condition? So we want to know, did I take care of me first, I say to them, I say the caregivers, the caregiver caregivers, you know, if you’re about to go on this journey, do you think you need to put fuel in your vehicle? Right, and the fuel that you’re putting in your vehicles taking care of yourself?
Tsgoyna Tanzman 36:03
And so the first question I asked is, How do I feel? And you just get to circle a number? How do I feel 10 is great. And one is not very good? How is my energy that’s even different than how I feel? And then I love this question. So I love to give, you know, analogies. And I say to people all the time, when you’re baking a cake, what’s the very first thing you have to do? And people go, well get out the great ingredients.
Tsgoyna Tanzman 36:34
I said, Well, that’s great. That’s important. You need those ingredients, they would mix it up, I said, Well, that’s also important too. But the first thing you have to do is turn on the oven. You have to warm that oven to prepare it for accepting something to rise. And I like that to prepare yourself, you have to warm your internal oven, your internal spirit.
How Traditional News Channels Can Impact Mental Health for Stroke Caregivers?
Tsgoyna Tanzman 37:03
And when people say that the first thing they do is turn on the news. I go (beeping sound) back it up a little bit because that is a way to tune yourself to every problem in the world. Every disappointment, every negative thing, whether it’s the world economy, whether it’s defiers, whether it’s the air quality, whether it’s the catastrophes not to say that you want to bury your head in the sand about that, but don’t make that the first thing you do to set your day.
Bill Gasiamis 37:42
You don’t need to know about the collision that happened in the country. 12,000 miles away?
Tsgoyna Tanzman 37:50
Yeah, you don’t. You don’t need to hear about it every 15 minutes. I don’t know if the Australian news is the same, but it just runs on this loop. Yeah. So then I say, What do or can I appreciate? Sometimes the word grateful trigger triggers people to like, there’s nothing I can be grateful for. But they might say appreciate, like, can I appreciate like, a warm cup of coffee?
Bill Gasiamis 38:17
Having the same cup exactly as you.
Tsgoyna Tanzman 38:20
I know just think that’s so amazing, different continents amazing. Like thinkers. So that’s one thing. And then that’s the spirit part. And then the mental part is like writing a goal or an intention for the day. I am feeling what so that I Oh, no, I am doing something. So that I feel but honestly, really, I would change it. Now if I would do this again. It’s like I feel certain that I’m doing what, right? What am I going to do just one thing that would just be like, great, like maybe it’s, I am calm so that I can interact with my loved one without yelling today? I mean, that would be a huge win.
Bill Gasiamis 39:14
It is I have to say the thing you said about the news, the first thing in the morning, I don’t watch any of the I’m going to call it traditional media information type of networks at all. And the whole reason is because there are never good stories on there. You never hear a story of recovery. You never hear a story of overcoming you never hear a story of success.
Bill Gasiamis 39:40
You hear about the guy who failed the person who died, the person who was ripped off or something like that, and it’s and it’s a really difficult thing for me to have to do is to deal with the negative emotional states that cause me while I’ve, for example, had a bad night’s sleep because my left side was hurting and I couldn’t sleep.
Bill Gasiamis 40:08
So I’m already in a situation where I’m struggling to get out of bed in the morning because I’ve got a day to get to. The last thing I need is to bring my level of struggle higher. And to make it even harder by impacting my mental health and my emotional health negatively, by seeing the thing on repeat on the negative news, you know.
Bill Gasiamis 40:31
So I’ve got to say it’s something that I haven’t done for a very long time and you hear about the traditional news. Channels say, Well, where do people get informed from? How do people get their news and all that kind of stuff? It’s like, the book that you and I wrote, so my book is not out yet, by the way, in case anyone’s wondering, but your book specifically says, much-needed hype after a stroke.
Bill Gasiamis 41:00
The other one specifically says caregivers in the title so that people who have been through those journeys know that it’s for them, same with my book. But the news doesn’t bring us specifically the types of bits of information that we are going to benefit from and love to hear from, there’s no benefit in learning about the collision, about the drama in another country about the flood in another country.
Bill Gasiamis 41:25
You might think there is they might tell you that there is, but you little old, you’re living in the middle of nowhere, and benefit zero from that. So it’s like unnecessary news, it’s taking up space in your mind. Where the better thing to have in your mind would be what’s the great recovery story that I want to know about, somebody who’s been in the situation that I’m in.
Bill Gasiamis 41:51
And if you do a Google search, and you tell Google, I’m looking for inspirational stories on stroke recovery, they’re not going to bring you the junk that you need to get through to get to the inspirational story, they’re just going to get your inspirational stories. So if you choose you choose your words, and your searches wisely, and you want to get specific about exactly what you need.
Bill Gasiamis 42:19
I feel like a Google search with the exact keywords that you want to find, is going to specifically bring you that and then you can feel your day, and your brain and your mind. And you can use your energy in a way that’s going to support you, your caregiver, and the stroke survivor in recovery. And it’s not going to make you feel worse, it’s going to make you feel better.
Tsgoyna Tanzman 42:43
We have to be vigilant about our emotional well-being. And we have to choose the people, the language, the stories, the environment that supports that because you’re 100%, right like that. Another energy is depression, and you need all the energy you’re going to, get through recovery, you need it to be uplifted, you need to be spiraling upward, not spiraling downward 100%.
Bill Gasiamis 43:19
Your book there seems to be an amazing way for somebody to track how they’re going. And hopefully what it will do is say they’re tracking two or three days or weeks of feeling unwell or not having taken care of myself, hopefully, that gives them information to say, Okay, this is tracking a certain way, and I need to pay attention.
Bill Gasiamis 43:42
And I need to do something different. Because I don’t like the way this is tracking. I am clearly in a pattern that’s not tracking down a path that I would prefer for say, my friend of mine who was a caregiver, if I was noticing those patterns in that caregiver, I would bring them into their awareness, I would say Hey, this is what I’m noticing about how you’re going about caring for yourself. Maybe I need to look after myself.
Tsgoyna Tanzman 44:12
Absolutely. And that and we do we’ve got this like journal that shows that. And, then we look down at what’s today’s most memorable event or achievement. Look for evidence of small wins. So we’re getting to look at that at the bottom. It’s like did I ask him that question? Did I drink water? Did I eat healthfully? Did I practice mindfulness or meditate or pray? Did I move my body and exercise? Did I connect with the Community and practice self-care?
Tsgoyna Tanzman 44:46
Like all of those things at the bottom are the best health life-giving things that you can do. But you know, it’s interesting that you said if I was tracking this I might say something. And in fact, like for every week, in the end, there’s a list of questions to answer the questions. So this journal is, can, it’s interesting because it’s for the caregiver and part of it is self-reflexive for the caregiver.
Tsgoyna Tanzman 45:20
But because the caregiver is in a position to be responsible for another person, we want to keep a running record of questions. You know, like that, then when you go to your doctor’s appointments, like there’s going to be questions that come up all the time, and we forget them. We’re so busy. But if we have a place to jot down oh, there’s a medical question I want to ask, there’s a question about my, suddenly I noticed, you know, my loved ones dropping their foot, and they’re tripping.
Tsgoyna Tanzman 45:52
I noticed that they’re more agitated, or their speech is somewhat better than those questions, they can take a picture of that, bring the whole book and go talk to their medical provider, or talk to them on the phone so they can remember it.
Tsgoyna Tanzman 46:07
Because, you know, I don’t know if again, in Australia, but in the States, people go in and your luck, you usually wait an hour, and then you get a 15-minute appointment if you’re lucky. And it goes fast. And unless you’ve got your questions to ask, you’re gonna walk out and go, I shouldn’t have asked that I forgot.
Bill Gasiamis 46:28
It’s why I’ve got the download. People can go to the website, and they can download seven questions to ask a doctor after a stroke. And they may seem insignificant or minor or whatever. But the questions are simple. Where in my head is the damage? What is their part responsible for? And it’s probably not the best seven questions, but the questions that I needed answers to, but they are questions to start the conversation so that questions can then flow. And that you take the conversation in a path where you’re active in the conversation, rather than the doctor telling you all these things, and you’re just sitting there going, okay. And then we’re not getting much out of it. And then leaving not knowing also, one of the other amazing things is that I realized recently is you can now with a phone going in the record a conversation that you have with a doctor if you get the permission, of course, the member so that you can remember what the conversation was about because a lot of strokes survivors do not remember.
Tsgoyna Tanzman 47:33
Yes, it goes fast. I remember, you know, suggesting that to patients many years ago. Because if you go in there, and you’re already at a high level of stress, because of this event, we know that when emotions are high intelligence is low. And that’s for everybody. Like, as soon as they give you a diagnosis, most people just go completely blank.
Tsgoyna Tanzman 48:02
They just can’t process it. And so yes, bringing in your phone to record the conversation, asking those questions that you had put together, I saw them on your website. And they’re so useful because that starts to signal that that person is involved in their care and that they’re not just passive recipients.
Tsgoyna Tanzman 48:27
Because it’s your life, nobody should care more about you than you, right? And you’ve got to have those questions to ask, you’ve got to have a desire about where you’re going. And so there are other little things inside the book that are just, you know, helpful for the caregivers like inspirational things like you’re a human being, not a human doing.
The importance of having a dream break – Tsgoyna Tanzman
Tsgoyna Tanzman 48:51
And there we talked about dreaming right? There was a place here that was about dreaming. And I said time to dream Yes, you deserve to dream plan, and do as well and it was a dream break 30 things I loved to do love or love to do what I loved as a kid you know so often what happens is if there’s a caregiver that gets some time off, all of a sudden they’ve been in this routine for so long, they don’t even know what to do.
Tsgoyna Tanzman 49:26
So we want to give them that opportunity to say what did I love as a kid? What do I love now? What have I always wanted to try? Can I do something like that? And then planning that name one little thing in their weekly plan so that they do believe that they still have a life, whether it’s, you know, they want to go take a walk, they want to go to the mall, they want to have coffee with a friend.
Tsgoyna Tanzman 49:56
They want to get their nails done or you know To play a game with somebody. So those are some of the things that are in there. Then I like to look at this evaluation. And this is where the caregiver can discuss with the survivor. What went well this week? What can we improve? You know, like, you’ll notice as you’re doing it, you start, nobody tells you how to do this. Like, it’s, it’s like bringing a baby home for the first time, except there’s a lot of books about that.
Tsgoyna Tanzman 50:36
Now, all of a sudden, you’ve got to adult to know like, what, what, and some of the stories are funny later, but some of them are, are trying. So you’re always asking, like, what went well this week? What can we improve? Do you know, when, who, how, or what can we do to make things better next week? So like one small thing, and it gives us a direction, just one little thing, not everything, one little thing. But it all started back with what you said, We’ve got to elevate the awareness. First of all, this isn’t just automatic, we are elevating our awareness.
Bill Gasiamis 51:17
Yeah, it’s awareness is probably one of the key things because it’s tied into mindset, I think. And if you can bring the right awareness, then the right mindset kind of kicks in. If you’re not aware of the things that you’re doing to start your day, or negative news cycles, then it could impact your mindset for the day.
Bill Gasiamis 51:37
You might not be aware that your mindset has been impacted negatively, and that you feel negative about the world or the situation or whatever, because something has happened that you’ve done, just out of habit, which allows somebody else to control the narrative in your mind, because you switched on a certain channel, on, on the news, on the radio, or wherever.
Bill Gasiamis 52:02
So I think it’s really important to protect your mindset, with awareness. And becoming more aware allows you to put barriers around your mindset so that you can choose the mindset you’re going to have. Well, the first chapter of my book is about mindset. So you can choose the chapter and the mindset that you’re going to have and run with it. And hopefully, you’ve chosen a growth mindset. And that mindset that’s stuck or fixed.
Bill Gasiamis 52:27
And if you haven’t chosen a fixed mindset, then you’re going to experience a better one. Here, your caregiving role is going to be better than what it would have been if your mindset was always going to be about no hope, and no possibility of things improving, etc. So I think, if we can make people aware of how they’re being influenced, and then get them to switch their influence, what they want to be influenced by the mindset gets a boost of support.
Tsgoyna Tanzman 53:11
Yes, there’s no question about that. Your mindset is everything. And you mentioned a growth mindset. Are you familiar with the term post-traumatic growth?
Bill Gasiamis 53:24
Oh, my gosh, well, I spoke about that two weeks ago. And I am familiar with the word because that’s what I’ve experienced. And there is a lot of research on post-traumatic growth. Now, the power of suffering is a very popular comment. So I’m very aware of the concept of post-traumatic growth. And that’s what I experienced after my stroke. And that’s what my book is about.
Bill Gasiamis 53:48
It’s about giving people the steps to post-traumatic growth. They might be doing a few of the steps to 10 steps that are involved, but they’re just not aware of a couple of them. And as a result of that, they’re just a little bit further away from feeling like they’ve had post-traumatic growth, we always talk about post-traumatic stress disorder. And we hear about the opposite of it. And there’s so much awareness about that. And that’s great because we’re helping people get out of that and overcome that. But that’s what I’ve experienced post-traumatic growth. So tell me about it.
Tsgoyna Tanzman 54:23
It’s such an incredible phenomenon that is just like you say, where the circumstance on the outside looks like the worst, most terrible catastrophe. And yet, for some people, there is incredible growth that comes with awareness. A shift in priority, a shift in value, recognition of how loved they are a new purpose, a new direction.
Tsgoyna Tanzman 54:57
I mean, look at you, you never had a podcast before this was not in your wheelhouse before. And here you are educating people and serving people in the world. And I hear that from so many of my patients, a woman who had debilitating depression had lost a baby, who died at her breast while she was nursing.
Tsgoyna Tanzman 55:23
And she went into a paralyzing depression for years and had a stroke. And because, and she isolated herself, and as a result of the stroke, she was forced to be in the company of a lot of different people. And all of a sudden, this paralyzing depression was lifted from her and she connected and, you know, she, it was just remarkable who she became.
Tsgoyna Tanzman 55:51
And I hear that from many, many of my patients, the patient that was alcoholic, who said, the greatest thing that ever happened to him was that he had a stroke, and it freed him of that debilitating condition of alcoholism. It’s like, wow, right? Like, nobody would say, Hey, I think you know, on my to-do list today, I think you should have a stroke because that sounds like a great way to have a good time. Nobody signs up for that.
Bill Gasiamis 56:20
Nobody does, it doesn’t start well. And it might not be good for years. And it might not seem like you’re getting better for years. And for me, it probably took around three or four years for me to get to the point where I first said that this is the best thing that happened to me. And then it took. And it took two years to research the book, and then another two years to write it.
Bill Gasiamis 56:44
So the whole journey is to deeply dive into that expression. And to embody that and to identify as that it took six years to get there fully get there. So when I reflect on day one, and it says it in, I think the first chapter of my book, day one was not the day that I realized stroke was the best thing that happened to me.
Tsgoyna Tanzman 57:08
Yeah, that was not the first day that you figured that out.
Bill Gasiamis 57:11
Not. So we’ve got, you know, there’s hope, after stroke, you know, to, quote your first book title, there is hope for all of those things. And what’s beautiful about it is it’s not just for the stroke survivor, the stroke, the best thing that happened to the person whom I’m caring for. You might not say that in those words to your family.
Bill Gasiamis 57:39
But it could be the beginning of some kind of amazing shift in the way you think about your relationship with life and your relationship with how you go about life. And what’s necessary to do life differently so that it serves a purpose. Rather than have a life that is not serving a purpose or greater purpose. You said something about stroke survivors going through that process and having post-traumatic growth.
Bill Gasiamis 58:11
The amount of stroke survivors who are in a week, one month one year of stroke recovery, who make it about other stroke survivors, is just phenomenal. My podcast is full of people who want to help other stroke survivors. And that’s one of the things one of the chapters in the book specifically talks about doing something for somebody else, and how that makes a massive difference in their life.
Bill Gasiamis 58:38
So as a caregiver, you can potentially, if you allow yourself some personal development work if you allow yourself some curiosity around, what can I learn from this or what can be what good can come of this, it might not end in a good outcome for the patient. But there may be something good that comes out of the experience that you all went through together.
Bill Gasiamis 59:07
And it’s really important for caregivers, not as separate themselves, are as easy for you to say, because you went through this traumatic thing, and then you had an aha moment or whatever. Well as a caregiver, you can have the same dramatic moment with somebody else’s illness, they can have the illness, and let them do that, because they’ve been chosen for that.
Bill Gasiamis 59:27
Why don’t you learn from that illness that they’re having and transform the way that you want to go about life and leave some of the behaviors or the old patterns behind, even if it’s hard to do, even if it’s hard for the other person who you’re caring for, to adjust to? It might just be what everybody needs is to go where the pain is and deal with the pain and focus on the pain so that you can put it behind you and decrease its Power, and then move on, in, in less pain because where the pain is, is where the work is.
Tsgoyna Tanzman 1:00:06
Absolutely. And you brought a great word to it too, which is curiosity. Yeah, it’s like, what can I learn from this? What can I know about this? How can I process this? Who am I becoming because of this? Who do I want to become because of this? Those are really powerful questions to ask. I want to say something about language, too, I think you mentioned at the beginning, that the language that we use doesn’t just describe our reality, it creates our reality.
Tsgoyna Tanzman 1:00:44
I’ve worked with Tony Robbins coaching with him. And, you know, he did this, you know, he’s dealt with millions of people worldwide for decades. And he came to understand that most people have, you know, five emotions that they deal with regularly, anger, frustration, depression, you know, a couple of those kinds of things.
Tsgoyna Tanzman 1:01:12
And part of it has to do with the language that they use, he said, you don’t just describe your reality. So like, for example, if you say to somebody, you’re wrong. Or if you say to somebody, you’re mistaken, you’re wrong, you’re a liar. Now, I didn’t change my voice in any of those. But you can tell like, by the time we get to, you’re a liar, that’s a very different feeling tone, then you’re mistaken.
Tsgoyna Tanzman 1:01:44
And when we use our language to describe our reality, we can turn up the volume on our negative feelings, we can turn up the volume on our positive feelings, or our neutral feelings, even something as I have to take care of my loved one. Versus I get to, I want to, I must, I need to all of those have very different things.
A shift in a caregiver’s mindset
Tsgoyna Tanzman 1:02:13
And I worked with a gentleman who was caring for his mother, she didn’t have a stroke, she had dementia. But he was a guy in his 70s who was living with his mother. And he’s like, I am the only one, I have to take care of her. And as we worked for a certain period, we got to find out the value that he was finding from that.
Tsgoyna Tanzman 1:02:34
And he switched it to, I get to take care of my mother. And I get to give back to her, I get to appreciate her in a way. And it just shifted the stress level for him and the resentment that he had towards other people. And it’s, you know, we have to do it in a context that feels real. We’re not going to say to somebody, Oh, I get to, you know, wipe his ass. Yey, that’s so much fun, right? So, you know, we’re going to be truthful about it. But we do get to see how we shape our experience from our language.
Bill Gasiamis 1:03:12
Yeah, it’s true. I did a presentation a few years ago called words are like weapons, they wound sometimes. It’s a beautiful line from a song by the singer Cher. And, you know, she’s on a battleship, and she’s wearing a sexy outfit, and she’s saying If I could turn back time if I could find a way.
Bill Gasiamis 1:03:40
And then one of the key lines is, you know, words are like weapons, they wound sometimes. And I was in rehab, doing rehabilitation I don’t think I was walking yet. Only about a week after the surgery, and I was in there. And I tell the story about a gentleman I met who I think his name was, I don’t know his name, but I called him Ivan.
Bill Gasiamis 1:04:06
He looked like an Ivan to me. And he had a stroke. And he was dealing with I think left side paralysis or right side paralysis. One side of his body was not working. So he was hemiplegic. And he was in rehab and was doing hand rehab. His job was to pick up an empty toilet roll which was stood up and to move it with his affected hand to the other side of his body and let it go and make sure it didn’t fall over.
Bill Gasiamis 1:04:37
But he was calling his hand to bastard in that process. Now I was a coach. I was a life coach before I had all of these dramas in 2012. And when he was going through that process, “Come on you bastard, move” he was saying that to his hand, and he wasn’t getting the result. Now, I was sitting on the opposite side, I could see what he was going through, the frustration, I had my hand in a bucket of rice trying to find the pen, trying to find the marble, trying to find, you know, the paper clip all that kind of stuff.
Bill Gasiamis 1:05:14
And over sensory kind of box, it was called or something like that a sensory box or something. And I just said to him, I said, if your hand moved, and it did what you wanted it to do, what would it be? And he said it’d be my friend. I said, okay, do me a favor, pretend that it’s already done what you want it to do, and see what happens and call it instead of a bastard, call it your friend.
Bill Gasiamis 1:05:42
So he did that. And he just looked at it and goes, come on, friend, move. Within, literally, I don’t know if we can measure it in a second or not. Because it was less than that. He picked it up, they picked up that toilet roll, after having tried and failed many, many times, and put it on the other side, and stood it up and let it go.
Bill Gasiamis 1:06:04
So immediately everyone went nuts. A lot of people noticed that some of the therapists missed it because there were a few of us at the table. So they might have missed it. But he noticed the difference in the way that he was speaking to his hand, and the result that he got, just by changing one word, and the amazing, dramatic difference that he got.
Bill Gasiamis 1:06:29
And that’s it, he was wrapped. And then I’ve never known what happened to him after that. Because after a month, I was out of there, and I’m not sure what happened to him. But I hope that he took that home with him and used that to help him walk.
Tsgoyna Tanzman 1:06:46
100% I just love that. And I’ve said that also with my patients, you know when the sometimes the physical therapists are saying like up with the good and down with the bad. It’s like when we think something is bad. We want to reject it. When we call it a baster. We want to reject it we are disconnected from it.
Tsgoyna Tanzman 1:07:05
We’re already disconnected, we want to integrate, we want it to notice that we want to get curious about it. You know that there’s an acronym that saps the stroke-affected side, right? So I said like, that’s my sassy side, right? We have handicap placards, here, I call them the VIP pass, it’s like getting your VIP pass for getting some good parking, you know.
Tsgoyna Tanzman 1:07:34
Like all of these things are small, but perceptual changes in how we feel about them. We are either integrating or disconnecting, we are embracing or rejecting, and I think I love that you did that with him and that he saw that immediate thing. And it’s so profound, so profound.
Bill Gasiamis 1:08:01
The smallest change made no effort whatsoever to make the change. The result was, you can’t even measure it. I mean, it’s immeasurable, the results. And what that did for his self-esteem, what it did for the way that he felt about hope in his recovery, what they did for, you know, his arm movement, what it did for his family and what it did for everybody, everybody.
Bill Gasiamis 1:08:25
And I’m hoping that the other stroke survivors around us also noticed, you know, and perhaps they changed something. But then the lesson from that is I’ve been able to retell that story elsewhere, to people who came to hear me speak. And that was an amazing experience as well being able to go, Hey, this is the smallest thing that happened in an entire month. And it got the biggest result.
Tsgoyna Tanzman 1:08:56
Beautiful, I love that being able to share it with as many people as possible to flip the way that they think about something.
Bill Gasiamis 1:09:02
Yeah. And it applies to caregivers, right? It’s not just applicable to stroke caregivers, heart attack caregivers, cancer caregivers, stroke survivors, every person on the planet it applies to and that’s the thing about our books, you know, they are written for everybody but with a title so that our audience can find it and easily use it.
Tsgoyna Tanzman 1:09:25
When is your book coming out?
Bill Gasiamis 1:09:26
Probably September 1, the second week of September, or something like that. It’s with the editors now, so we’re putting the final touches on it. So it’s really exciting. It’s a great thing, and it’s what you said, you know, it’s the guy before the stroke, who didn’t write books and get podcasts and do that stuff. It didn’t do that he did other things that were designed by somebody else for me to be doing. They were a process in a way of life that wasn’t designed by me I was just going ahead and doing it thinking it was what I needed to do and thought that that was all that I was capable of.
Tsgoyna Tanzman 1:10:05
Yeah, you know, I tell you writing a book shows you who you are. There were some challenges with that, right? I certainly experienced them. Yeah.
Bill Gasiamis 1:10:17
One of the hardest things I’ve ever done. It is such a difficult task. Oh my gosh, I just could not believe how difficult that was and how mentally physically emotionally challenging it was going to be. It was just like learning how to walk again. But this thing, I couldn’t do it. That’s the thing. It was so hard to not do. It was the only thing on my mind. When I wasn’t doing it. It was just driving me insane. I need to be doing this.
Bill Gasiamis 1:10:45
And why aren’t I doing it? And, of course, there were lots of reasons for energy levels. You know, there were creative blanks about how do I go about putting this into words, and it was giving me this, but this was what I also learned from it, just like my recovery from stroke was giving myself time to let that come and download the way that it needed to download.
Bill Gasiamis 1:11:10
And to not be put under pressure by the people who had me on a one-year deadline. And then deadlines don’t work in stroke recovery. If you give yourself a deadline that I’m going to work to walk by this date, and you don’t get that you get disappointed. So I use the same approach to writing this book I know you need me to finish it, but it’s just not gonna get done. So we have to take longer on this.
Tsgoyna Tanzman 1:11:37
It’s not gonna get done in that timeframe. But it got done.
Bill Gasiamis 1:11:42
Exactly. So one of the things we’re going to sort of come to the end and wrap up in a little while, but just before we do I want to talk about because we’ve talked about we’ve spoken about caregivers who don’t sign up for the job. Okay, so family members, and loved ones, but what about paid caregivers?
Bill Gasiamis 1:12:02
So this is an interesting little spin on the whole caregiving world. Now, they get paid to go and do something for somebody else, maybe for eight hours a day. I feel like there are a few little traps and tricks in there that people who are paid caregivers might get stuck in or find themselves in that they weren’t aware, aware of because they’re not only obliged to do their work for the person they’re caring for but also because their employer says you have to do caring and caregiving.
Tsgoyna Tanzman 1:12:41
Yes, and sometimes I know, as a therapist working, sometimes I would say to a caregiver, allow the person time to speak or allow the person you know, the ability to struggle with what they were doing. The physical therapist would mention that as well. And, and the caregivers, the paid caregivers, felt like unless they were doing, somebody was going to report them for not doing you know that they weren’t doing their job.
Tsgoyna Tanzman 1:13:15
So it is a tricky little place to provide service for them. And we would say, Well, okay, what are some other things you could do that would be useful in providing care and being here for the family and, you know, getting the bigger needs taken care of? But that still allows that person their level of recovery, of failing or learning how to do it better and getting better at it.
Tsgoyna Tanzman 1:13:52
And so it’s an ongoing process. It’s not like a one-and-done because ideally, what you’re seeing over some time is that the person is getting better, the survivor is getting better, so we’re doing less than less for them. How can we make it easier, I worked with one care provider you know, that would just dress his patient, and the patient or you know, the survivor had no say in anything.
Tsgoyna Tanzman 1:14:22
So I started by saying, okay, instead of just dressing him, either bring him to the closet or bring out two things. And he was at a cognitive level where he needed simple choices. It’s like, do you want the red shirt or the white shirt? You know, you choose? Do you want the blue pants or the green pants, so that there was some autonomy, and he had to use his language to even ask for it or he had to gesture? He had to show in some way that he was, you know, making his needs known.
Tsgoyna Tanzman 1:15:00
And then, you know, taking him to, to the sink, you know, give him what his skills were, like I already knew from the occupational therapist, that he could brush his teeth, but he needed some setup. So it’s like, okay, provided here. Because before the guy was just brushing his teeth, it’s like, let this person do it.
Tsgoyna Tanzman 1:15:22
Even if he makes a mess, he’s going to make a mess. That’s okay. He’s going to make a mess. And he’s going to refine it, the more he does it, but if he doesn’t ever do it, he’ll never get better at it. And that’s that learned dependency, deciding on his food?
Tsgoyna Tanzman 1:15:42
Do you want soup or a sandwich? You know, whether he’s pointing to a picture, he’s pointing to the thing. He’s saying what it is that he wants. Any of those are? Yes, it takes longer. There’s no question that it takes longer. But that is the active role of a very good caregiver who can see incrementally little changes. And the discussion needs to be upgraded all the time as to what the roles and responsibilities are.
Bill Gasiamis 1:16:16
I’ve had the feeling that occupational therapists, physical therapists, speech therapists, and all sorts of people who are in the therapy field would be really good caregivers, so to speak because they would know where the lines are drawn. Okay, well, I think I’m going to let you do that on your own. Because if I do it for you, you won’t learn because they’ve been schooled and trained in that space.
Bill Gasiamis 1:16:38
But often, paid caregivers are not trained, they are just somebody who signs up and says, I’m looking for a job. And then the job is going to care for this person for an hour, they might get some basic training, but they don’t have the in-depth, detailed understanding and the schooling, to understand where they are getting in the way and for the sake of doing their job efficiently and quickly. Or to make sure that they don’t go over the allocated time that they’re given. They might choose to do this for that person, instead of letting them go through the process.
Tsgoyna Tanzman 1:17:21
Yes. And that’s where we end up in this learned helplessness or learned dependency. So it is a tricky balance. And, you know, very often families go through multiple caregivers until they find the right fit. And I do support people with that. With that, you know, it’s not easy. It’s not easy finding the right sort of energetic levels and understanding in the same way and you know, so that is a process that one learns about
How to get Tsgoyna Tanzman’s books
Bill Gasiamis 1:17:57
Well, this has been, again, an amazing conversation. Thank you so much for being on the podcast again, during the work that you do. Having written the books that you’ve written, I appreciate the fact that they exist, because they’re books that are desperately needed by the community. So we’re going to make sure that the links to those books are all available on the show notes. Just before we go though, tell me where people can find out more about you and where they can get your books.
Tsgoyna Tanzman 1:18:27
Yeah, so my books are on Amazon and wherever books are sold. They’re through Barnes and Noble. But I know that they’re sold in Australia. I see people buy them in Australia. So that’s the easiest way to get the books. You can reach me by hope-stroke.com That’s my website, also my first name which is always a little weird, because it takes a while to buy a vowel but it’s TSGOYNA.COM. Once you get the T’s like tsunami GOY runs with Boy and then there’s NA. So that’s pretty easy. TSGOYNA.COM
Bill Gasiamis 1:19:14
I’ve said it twice already and I’m getting it wrong again. TSGOYNA.COM.
Tsgoyna Tanzman 1:19:23
Or hope-stroke.com yeah, either way, those are the best ways to reach me and then I do have one other book which is out which is called Just Decide Failproof Strategies to Uplevel Your Life, career, and Relationships. But this is the basis of everything. I mean, it’s for caregivers, it’s, for anybody. It’s really about understanding that our thoughts, create our feelings which direct our actions and get our results. And you know that it’s not the circumstance.
Tsgoyna Tanzman 1:19:59
It’s not this Stroke, that creates a terrible life. Right? It’s, it’s the thought, this has ruined my life that creates that, that same stroke that you’ve had, you know, in when in the early stages, you’re thinking, you know, I don’t know if I can do this. And now your thoughts are, this was the greatest gift that happened to me. And when you’re thinking that thought, How do you feel?
Bill Gasiamis 1:20:27
Yeah, the difference, I think, okay, so, how that worked for me because you just picked up on something, you said the thoughts, create the feelings that take action that creates the action? If you started with the feeling? What would you like the feeling to be? So if you started the inquiry at your heart, that will then guide the head to have different thoughts? And then that would create different actions?
Bill Gasiamis 1:20:59
So usually, we give the head the job of doing everything, and coming up with all the solutions and all that kind of stuff. And we bypass the heart and the emotional side of this whole thing. We go through negative emotions, but we don’t look at the positive emotional journey that can come from it. And what’s good about this question, what’s good about this is not asking your head for the answer.
Bill Gasiamis 1:21:25
It’s asking your heart for the answer. And what can I learn from this is to ask your heart for the answer, your head might have curiosity. But if you go from your curiosity, or your question starts with a heart-based desire, what would I like to get out of this? What would I like to learn about this?
Bill Gasiamis 1:21:45
How would I like to grow from this, then that’s going to give the head guidance as to what thinking to do, and what the appropriate level of thinking is. And then once the appropriate level of thinking is done, the legs take action to lead you down that path. And you start noticing things about that version of the thinking.
Tsgoyna Tanzman 1:22:11
Such a great way to direct your brain, from your heart based on the desire of where you want to go. Because when you ask a quality question like that, you get a quality answer. Your brain starts to search for quality answers when you ask questions like, Why is life so hard? Well, you can find a lot of reasons for that. But is that the result that you want? Or what am I learning from this? How am I gaining from this? How will this enable me to grow? Make difference? Yeah, beautiful questions.
Bill Gasiamis 1:22:50
Thank you so much for being on the podcast.
Tsgoyna Tanzman 1:22:52
Oh, my gosh, it’s such a pleasure. I know we could talk for hours, couldn’t we? With our same coffee cups?
Bill Gasiamis 1:22:58
Yes, and we probably will on another episode soon.
Tsgoyna Tanzman 1:23:02
Sounds great.
Bill Gasiamis 1:23:04
Thank you, again, so much. And I look forward to following the work that you do.
Tsgoyna Tanzman 1:23:10
I do too. I can’t wait till your book comes out. Good luck to you. And thanks so much for having me.
Bill Gasiamis 1:23:15
Thank you for joining us on today’s episode. To learn more about my guests including links to their social media, and other pages, and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:23:30
If you’d like to support this podcast, the best way to do it is to leave the show, 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, comment below the video like this episode, and get notifications of future episodes. Subscribe to the show on the platform of your choice.
Bill Gasiamis 1:23:51
If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them all you need to do to qualify as the best stroke survivor care for someone who is a stroke survivor, or is one of the fabulous people who helps stroke survivors go to recoveryafterstroke.com/contact.
Bill Gasiamis 1:24:13
Fill out the form. And as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over Zoom. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 1:24:28
Importantly, we present many podcasts 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 1:24:45
All content on this website at any linked 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 1:25:07
The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content.
Intro 1:25:29
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 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 1:25:49
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 the 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 To Support Stroke Caregivers | Tsgoyna Tanzman appeared first on Recovery After Stroke.
1 hr 27 min
June 19, 2023 Pontine Ischemic Stroke | Shamarah Giannetto
Shamarah Gianetto was 46 and a mom of a 5-year-old when she experienced a Pontine Ischemic Stroke. Listen to her story here.
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Highlights:
01:06 Introduction
02:24 The initial pontine ischemic stroke Symptoms
14:55 What’s changed since the Pontine Ischemic stroke?
24:28 The physical, mental, and emotional recovery
29:33 Keeping track of your recovery
34:27 The Benefits of Yoga for Stroke Recovery
44:27 Dealing with mental fatigue
51:32 A Recovery mindset is a gift
1:04:51 The importance of time management
1:10:51 Becoming more observant and curious
Transcript:
Shamarah Giannetto 00:00
And of course, I wasn’t able to parent the same. I’m still not. I haven’t been working I’m set to go back in June. They gave me six months, and again physical recovery has been great physical therapists were wonderful to work with for me, it was kind of a lifesaver and kept me out of depression because I was working toward something. But now it’s the mental part and the brain is, as you know, I’ve listened to your podcast. It’s much slower to recover. And so it’s kind of just, I’m learning to be patient very much against my will.
Intro 00:54
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Shamarah Giannetto

Bill Gasiamis 01:06
Hello, and welcome to episode 255 of the Recovery After Stroke podcast. My guest today is Shamarah Gianneto, who experienced a pontine ischemic stroke as a mum of a five-year-old when she was 46 years old. Shamarah Gianneto welcome to the podcast.
Shamarah Giannetto 01:25
Thank you.
Bill Gasiamis 01:26
Thank you for being here. You are a trooper, thank you for getting up so early. After I’ve mucked up the times, and got you here at the crack of dawn. I know it’s a test. I’m not attempting to test you. But thank you for taking up the challenge.
Shamarah Giannetto 01:43
It is a challenge. I don’t think I’ve been this early since I had a baby.
Bill Gasiamis 01:48
Fair enough. Tell me a little bit about what happened to you.
Shamarah Giannetto 01:54
In December of 2023, December 14, I was at work and was chatting with my office mates. And one of my office mates is an 80s Rock Band. And so we were talking about new songs that she wants to cover. And I was playing a song and kind of bobbing my head like this when I felt a pop in the back of my neck.
The initial pontine ischemic stroke Symptoms
Shamarah Giannetto 02:24
And I had been deadlifting previous days. And so I thought oh my gosh, it’s a neck injury from lifting weights. But my left side immediately went numb. I stood up, I was dizzy, and kind of confused, and my voice changed right away. And I thought something was wrong.
Shamarah Giannetto 02:48
And so I called my husband who was working close by. And he took me to the ER and they did a CAT scan and they did an evaluation. And while I was sitting there I was slowly losing speech it kind of felt like a migraine and I get migraines.
Shamarah Giannetto 03:08
And so I thought like is this a migraine is this you know, something like that? Did a CAT scan didn’t show anything? And so she thought, Oh, you have a pinched nerve. And so she gave me some shots for steroids to reduce swelling, and some painkillers and sent me home.
Shamarah Giannetto 03:29
Throughout the evening, I lost more and more speech, it was becoming more slurred. My left side was completely useless. I was dragging it around. And I wasn’t able to sleep that night. So I stayed up all night just kind of googling my symptoms. And none of my symptoms matched with a pinched nerve they all matched with stroke.
Shamarah Giannetto 03:54
And so I called my sister the next morning who was a nurse, and she heard my voice and immediately could tell something was wrong. And she said you’re having a stroke, you need to go back to the ER. So I did. This time when I walked in, I said I thought I was having a stroke and I listed all of my stroke symptoms, and they initiated the stroke protocol.
Shamarah Giannetto 04:20
And I got an MRI and they could see that I was having an ischemic stroke in the pontine region of my brain. So then I was admitted. And they gave me all the blood thinners and all the things and started that process. So yeah, I had a stroke.
Bill Gasiamis 04:38
What was the pop?
Shamarah Giannetto 04:39
The pop. So when I was doing my deadlift, and I’m not like I’m not a gym rat, I’m not that person. I was just trying to lift weights. And it was part of a routine I was doing. The pop was I had a bulge just on my C4 and C5 that something happened, and I haven’t yet been able to consult with a neurologist to find out if that’s what, you know, maybe caused the clot to happen. But that was the pop and because there was the pain and that injury happening at the same time, it was very difficult to get that diagnosis the first time around.
Bill Gasiamis 05:33
Yeah. So you’re just bobbing along during the music.
Shamarah Giannetto 05:39
Yeah. And listening to music, bobbing my head, had no previous indications that I had any health issues. I’m 46. And, you know, fairly healthy probably could lose 10 pounds like everybody else that I know. But, you know, I’m active. I was mountain biking two to three days a week working out. Doing not deadlifts all the time, but doing weights and higher intensity training, is that what it’s called? HIT?
Bill Gasiamis 06:17
How old are the kids?
Shamarah Giannetto 06:19
I have a six-year-old. She was five at the time.
Bill Gasiamis 06:23
Yeah. I’m just, you know, once in a while I just try and get my head around the whole situation that happens, you know, out of nowhere. I’ve had people come on the podcast because they’ve cracked the neck and caused a tear in one of their arteries, and it’s caused the stroke.
Bill Gasiamis 06:43
I know a person I think, sneezed. I mean, just some bizarre, strange scenarios, and you’re just sitting there bobbing your head, and you have a result like that. And it’s just so many ways. There are too many ways for people to have strokes, let me tell you. So how did you get help? What happened with the people that were around you? What did they do?
Shamarah Giannetto 07:17
So half of my office was away at lunch. It was me and another office mate who was in the office. And I remember just telling her something was wrong. And she said, what do you need? And, I said I needed to call my husband.
Shamarah Giannetto 07:31
So I did, and again, what I was noticing was, you know, I’ve had migraines since I was 15. I know what a migraine feels like. And I think I kept trying to tell myself Oh, this is you know, pretty migraine coming in. Because it was like this tingly feeling on my left side. And my speech was weird, which has happened before when I’ve had migraines.
Shamarah Giannetto 07:56
But I’ve never had it concentrated so much on one side. And so when I talked to my husband I was kind of telling him, you know what was going on he said, I’m gonna come to get you and I’ll take you to the ER. But really, it was it kind of happened all within 10 minutes. And then he was there five minutes later, and I was going to the ER, so it all happened very quickly.
Bill Gasiamis 08:22
Can I ask a silly question? Why did you feel the need to call your husband and not an ambulance?
Shamarah Giannetto 08:29
I didn’t want to pay for an ambulance.
Bill Gasiamis 08:32
Okay, that’s legit.
Shamarah Giannetto 08:35
Yeah, and I work on a college campus, the community college campus and I didn’t know if they’d be able to find me, you know, so it was kind of, you know, my husband knows exactly where to go. I knew I couldn’t drive myself. I was already feeling like, I should not be driving.
Bill Gasiamis 08:51
And the people that were with you did they argue with the train and insist on getting an ambulance did they just go with what you were saying?
Shamarah Giannetto 08:59
I don’t think they knew what was going on. Because I was in my cubicle. They were in theirs as I was kind of going through all the motions and I decided within five minutes to call my husband right away. And then he was on his way so then the hospital that we have is a stroke recovery.
Shamarah Giannetto 09:21
It’s, you know, that’s kind of their specialty. Which is I’ve been working through your stroke center and I was at home I’m having a stroke. But you know, things can be misdiagnosed and I understand that so yeah, right. But we’re, we’re within you know, about five minutes from the hospital so I was logistically close and so I knew once I had arrived, I would be fine.
Bill Gasiamis 09:52
Or they don’t want to make you feel bad because I made that decision twice. I had two brain hemorrhages and both times. The first time I didn’t go to the hospital for seven days. The second time, I drove past the hospital, to go home to tell my wife to take me to hospital. So I’m not saying it to make you feel bad.
Shamarah Giannetto 10:12
I don’t know. I’ve never had one. I do have insurance through my employer. But I believe it’s around the same.
Bill Gasiamis 10:12
I’m just curious about the thinking that goes on in the thing that you said about the cost. That’s legitimate because I hear it a lot. So because I’m in Australia I’m not sure what an ambulance ride costs in the United States. For us, I think it’s about $3,000 or $4,000. If you haven’t got insurance, what does it cost for you guys to have any idea?
Bill Gasiamis 10:45
So with the insurance through your employer, does that then cover you for the ambulance ride? Would it normally cover you?
Shamarah Giannetto 10:54
I think you have a copay for an insurance ride. And I’m not sure what it is. It depends on your level of insurance. We have tiers that you can pay for. And so I think I know that like when I go to the ER, I have a $250 minimum copay that I have to pay when I go in.
Bill Gasiamis 11:17
Yeah, so I just did a Google search while you were talking about the cost of a hospital ride in the United States. And I’ve got it listed here at about an average of about $1,300. So I can see why some people would try and avoid getting a bill because then it’s expensive to be in hospital as well.
Shamarah Giannetto 11:41
Yeah. And what’s interesting, the next day when I called my sister, she was working in a hospital. And she answered my call because I rarely call her while she’s at work. And she said You need to get an ambulance. And then she called me back in two minutes and said, I’m going to call an ambulance for you.
Shamarah Giannetto 12:02
And I said, no, you know, my husband, Mark is on his way. He’s taking me right now. And she said, Okay, if he’s not going to call you again, in two minutes, if he’s not there, I’m calling you an ambulance, like Time is of the essence was what she just kept saying.
Shamarah Giannetto 12:17
And so even when we were going through the ER process, and they were admitted me the second day, as soon as I said, stroke, you know, I wasn’t putting triage, I was immediately brought back, they had a, you know, doctors on me, they, they took me to the MRI, and didn’t know MRI right away. And then about 30 minutes later, it was confirmed I was having a stroke. So those are the magic words, if anybody thinks they’re having a stroke, when you say, I think I’m having a stroke, and you start listing some of the symptoms, you will not have to wait two hours.
Bill Gasiamis 12:59
Yeah, you get the red carpet treatment, I did the same thing. The second blade, I went into the hospital, and I said to them, I said, why I didn’t go in, they collapsed. So that was I got a and then a collapsed black. They didn’t know who I was, or anything. The third time I went to the ER. And I said I’m having a stroke.
Bill Gasiamis 13:26
And they said to me yeah right, what are you talking about? I said I was having a stroke, and they said, give us your information, your name, and all that. I said there’s no time for that. Just get me straight in. And they’re going, no, hang on a sec, just give us all your details. We’ll bring you up on the system.
Bill Gasiamis 13:42
They were trying to get my history up so they could diagnose who I was or what I was talking about and what the details were. And then, of course, I went into CT. And then it was confirmed that I was having another bleed. But yeah, it was the red carpet treatment. And usually, it is, you know, waiting for 8 hours or 10 hours or whatever it takes.
Bill Gasiamis 14:14
And there’s probably no worse, and better place to wait because if you’re in hospital, at least you’re waiting in hospital. And that’s probably one of the better places to be. But then at the same time, it’s, you know, you’re so close and you’re waiting and then that’s sometimes also missed, while they’re triaging you and trying to get you the help and then trying to help all these other people. Look, I wouldn’t want to be in the medical system. I love what they do, but I just wouldn’t want to be involved in that. It’s just too much pressure as far as I’m concerned.
Shamarah Giannetto 14:49
Especially after the pandemic, I think a lot of people are just at their limit.
What’s changed since the Pontine Ischemic stroke

Bill Gasiamis 14:55
Yeah, absolutely. So what’s changed for you since you had the stroke? So I know five o’clock in the morning wake-up times are not ideal. And thank you for doing that. But what’s, what’s changed?
Shamarah Giannetto 15:15
I feel like it’s kind of like, where do I start? When I was in recovery, you know, I couldn’t move my left side, my speech took a, it took a while, I mean, I feel so lucky, because I’m sitting here talking to you. And, you know, I don’t look like I’ve had a stroke.
Shamarah Giannetto 15:40
So a lot of what’s happened in the last, you know, four and a half months, this physical recovery has gone well, mentally, there’s still a lot happening. And so I would say, the most significant thing that changed for me was I went from being fully employed running a department, community college, work, you know, working being a mom being a wife being very active to being in a bed, and focusing on just doing this with my fingers for you know, every day and trying to wiggle my toes.
Shamarah Giannetto 16:22
And I did when, when I had my stroke, the very next day, I was doing physical therapy, the physical therapists come in and, and I was in a recovery room with three, the two other stroke survivors who had much more severe issues going on, I did. And so the physical therapists were coming in and just moving their bodies, you know, like, manually, I was able to get up and use a walker to walk up and down the hall.
Shamarah Giannetto 17:01
And they had a physical therapist, an occupational therapist, and a speech therapist come in and evaluate me the very next day. And everybody kept telling me, you know, when, when they were coming in, why are you here? Or they kept asking, Why are you here. And, you know, so I had to repeat, I had a stroke, and a stroke and a stroke. And that was helpful because it kind of helps you accept what’s happened to you like, on the surface, at least, you know, for the time being.
Shamarah Giannetto 17:36
But that was all new to me, I had never had any kind of physical limitation, I’ve broken my elbow, I’ve broken my foot, you know, I’ve, I’ve done things. But never had that kind of, you know, not being able to live my arm. And so I was a special education teacher before I moved to the community college world. And I just started observing, you know, what’s different now? Who am I now?
Shamarah Giannetto 18:08
Like, what do I want to go back to? And the physical therapist kept talking about, you know, what was your baseline? What were you doing? What was your average life? You know, what was your life like before you had the stroke? And that was going to be their goal to get me back to that if they could. And so that my focus shifted. And of course, I wasn’t able to parent the same. I’m still not. And I’m, I haven’t been working, I’m set to go back in June.
Shamarah Giannetto 18:41
They gave me six months. And then, again, physical recovery has been great physical therapists were wonderful to work with me, for me, it was kind of a lifesaver. kept me out of depression, because I was working toward something. But now it’s the mental part and the brain is, as you know, I’ve listened to your podcast. It’s much slower to recover. And so it’s kind of just, I’m learning to be patient very much against my will.
Intro 19:19
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. How long will it take to recover? Will I 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, so you probably don’t know what questions to ask.
Intro 19:43
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 20:03
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.
Shamarah Giannetto 20:22
You know, with myself, and one of the doctors that the acute rehab center was describing to me the fatigue I was going to fill, he was trying to sort of prepare me for it. And he said it’s going to be unlike anything you felt. And it’s gonna come out of nowhere, you’re gonna be humming along feeling okay? And boom, you’re gonna hit a wall.
Shamarah Giannetto 20:45
And he was exactly right, and he said, You know, it’s kind of like when you’re pregnant, and you’re building, all of your energy is going into building this baby. And so I said, Oh, I’m my baby. And he said, yes, you’re your baby now. And you have to kind of treat yourself like that, like you, your brain is going to be re-rebuilding and reconnecting and you just have to go with it. And I’ve never been a person who can go with it. And so I’m learning to go with it.
Bill Gasiamis 21:19
You’ve got a pretty good grasp of the whole situation, and you’ve got a good understanding of where you’re at, and what needed to change. And they’re really good things because you’ve, you’ve, you’ve your identity shifted, and it’s only been early, it’s early days in the shifting of your identity. So you can’t expect that to kind of just flick the switch and go to this new version of your patient, and all these things, right?
Bill Gasiamis 21:48
And it’s not that you’re not patient, it’s that you’re, you’re re-evaluating your life and how things are. And what your thinking is, is, if this thing wasn’t like this, and if it stops being like this, then I can just go back to what I was doing before I can go back to life. And wouldn’t it be good if that wasn’t there anymore, because that meant that would mean that I’m okay? And I’m just back to regular life.
Bill Gasiamis 22:15
And all I got to do was worry about raising my, child, and then back to go back to work and run my department. And then if that just went away, that means I can go back and do all these things. And the thing about it is it never goes away. Now, the condition improves the fatigue decreases emotional resilience, and mental resilience improves with work. The physical recovery also continues to improve.
Bill Gasiamis 22:48
And, and I’m talking generally now so that anyone who’s listening regardless of your deficit levels in between, you know, six months post-stroke, you reflect. So if you get beyond, say, the five or six-year mark, and you reflect, many, many, most people will report positive results in that period, doesn’t matter what the deficits are, like, they come to terms with things differently, they find new ways to get around things, they adjust.
Bill Gasiamis 23:21
They find, you know, new things that they occupy their time with, and they find new hobbies and new friends and they heal emotionally, you know, so there’s always some kind of an improvement happening moving forward. So where you’re at is you’re at that acute phase, you’ve had a stroke, and it’s like, you just broke your leg. It’s, it’s just like that. I mean, it’s not. It’s not any further beyond that, because what six months is, is just like, I mean, it’s not even the tip of the iceberg.
Bill Gasiamis 23:55
It’s just like, you know, it’s just like, the first couple of drops that happened on top of the iceberg, you know, and it’s like, there’s the rest of it. And I don’t say that to make it sound daunting. Why I say that is because what I’d like people to do is be kind to themselves and give themselves time to heal. This is a moment for you to heal. So you’ve had 46 years, or wonderful years, whatever they’ve been. And what I’d like to say to you is now and this is like a very eloquent way of saying it.
The physical, mental, and emotional recovery

Bill Gasiamis 24:28
Six months is like pissing in the ocean. I mean, it’s not going to make a difference. But this is where you now work on yourself. That stroke is a three-pronged approach. You’ve got the physical recovery, you’ve got the mental recovery, and you’ve got the emotional recovery. And beneath that, there might be some things that you’ll pick up in your physical that you know make up that recovery hole for you and then the in the emotional and might be a whole bunch of things.
Bill Gasiamis 24:57
For me the emotional side was apologizing to a ton of people in case I kicked the bucket. It was making things right with my wife, my children, my brother, and my father, all those people, you know, that mattered who I wasn’t, in a bad relationship with, I just felt like, I could be doing better in that space.
Bill Gasiamis 25:19
So I made a point of making that stuff better, then in the emotional recovery is also how I’m responding to the thing that happened to me emotionally, you know, how do I feel about it? What kind of work do I need to do to understand and allow my emotions to express themselves and then not make a negative meaning about my emotions, what does it mean for a man to cry?
Bill Gasiamis 25:46
You know, a 37-year-old man who doesn’t show emotions, you know, what does it mean for that to happen? And, how can I reframe that, so I can start feeling like this could be a good opportunity to teach people to lead people to show them, you know, how you approach recovery, you know, to be a good example for my kids, and for all the dumb men that I know and love that hang around with me, but just not able to do emotional stuff, you know, and always hold it in and bottle it in.
Bill Gasiamis 26:19
And then with the mental recovery, that’s the only thing that I had that I was good at because I had started counseling when I was 25. So by the time I got to 37, I was 12 years in, and then I continued counseling. So what that did, was it gave me a really good platform, to think correctly, to have a good way to think about things that were serving me, and not causing distress and harm.
Bill Gasiamis 26:47
So instead of thinking, Oh my God, my lifesaver, I didn’t think that I had a mindset that was about, oh my god, what can I do to take control in this situation where there’s no control, sort of taught, technically outsource all that control to medical professionals to help you to heal you to recover you and all they’d send you home. And it was like, okay, so what can I do, to take the burden off them, but also to feel like I’ve got a little bit of control in the matter.
Bill Gasiamis 27:14
And if I’m not improving it less, I’m not making matters worse. You know, so it’s the gift that I would love to give people, those things that I mentioned, would be the gift that I would love to give people is say to them, you know, just give yourself the ability to just feel like this is an opportunity to learn and ask yourself that question.
Bill Gasiamis 27:43
What can this moment teach me? What can I learn from this? And how can I grow from it? Even though it’s hard and terrible. So with regards to your mental health, were you somebody who had mental health challenges before the stroke? Or it’s something different now? How are you experiencing it?
Shamarah Giannetto 28:03
I think it’s gonna sound weird, but I feel like I was very well prepared for this. Yeah, it’s weird. If, this was gonna happen at any moment in my life, now’s the time. I would say my mental health has always been I am a pretty positive, optimistic person. I have had challenges, and I did therapy a few years ago, I did EMDR therapy, which is a form of therapy that they do a lot for people who have PTSD.
Shamarah Giannetto 28:40
So it’s Eye Movement Desensitization and Reprocessing therapy. So I did some intensive EMDR for about, I think, a month. Um, and it’s the kind of therapy where you kind of have a couple of things that you want to work through, and then you’re done. So you kind of identify these moments in your life that you want to work through, and you go back and you work through them.
Shamarah Giannetto 29:10
And then it’s not talk therapy, it’s very, like goal-driven. And that’s the kind of therapy I like. So I am doing well, I did reach out to a therapist after I graduated from physical therapy, and I thought, Okay, now it’s time to start working on this again. And we’re doing more coaching.
Keeping track of your recovery after a Pontine Ischemic Stroke
Shamarah Giannetto 29:33
So it’s very forward-thinking. And, I like that approach because really, that’s what I’m trying to do. I am in that transitional phase that you’re referring to earlier where I’ve accepted that this has happened. I feel like from the day that I got home.
Shamarah Giannetto 29:58
My family really, I’ve always been a journaler they bought me this notebook. And I just kind of started writing in it, you know, like, what was going on what my fears were, what my goals were. And what’s interesting is you can see my handwriting from like, the beginning.
Shamarah Giannetto 30:17
And even though my left side was affected, and I’m right-handed, the writing is different than it’s like, I’ve even seen an improvement in my writing. But just to kind of track, you know, like, what was going on then. And this turned into a gratitude journal because I was feeling, you know as you said, a moment, I’m almost five months into recovery.
Shamarah Giannetto 30:44
But I was feeling frustrated with how slow things were going. And so I made the executive decision to write down five things I was grateful for every day, and just really work on it. And to come from, into recovery from a place of gratitude, and which, you know, is easy on some days and difficult on other days.
Shamarah Giannetto 31:13
Let’s so helpful to do, because, you know, even just being grateful for like, it’s sunny outside and can go walk, you know, I can go walk to the end of the driveway and back. I can do these things. And then can you sleep for two hours, because I’m exhausted from that.
Shamarah Giannetto 31:31
But, I do think that doing that EMDR therapy, kind of wipes the slate clean for dealing with this. Yeah, and feelings that I had around this. So I, I do think that’s a really important part. And when I found your podcast, I was kind of in this place. I was three months into recovery.
Shamarah Giannetto 32:02
It’s been hard for me to get doctor’s appointments. I still haven’t met with a neurologist, I haven’t met with a cardiologist. My neurology appointment has been rescheduled three times. And it’s set to happen next week. We’ll see if that happens. I hope it does.
Shamarah Giannetto 32:21
But you know, just feel like, I’m not getting the answers. I don’t know why this happened. I’m supposed to go back to work. And they still don’t even know how to treat me. I don’t know if I’ll ever get off blood thinners.
Shamarah Giannetto 32:35
I don’t know if I’ll ever get off these meds I went from taking zero meds to taking like six. I don’t like that. But you know, that’s keeping me alive. And I’m grateful for it. So maybe, you know, because I don’t know, this could be a cryptogenic stroke. It could be there could be no known cause.
Shamarah Giannetto 32:53
Or maybe there was a correlation with the, you know, popping and, you know, so but we just I don’t know. And I’ve had to become comfortable with living with that. Not knowing, which is difficult. You know, we’re so used to having all the answers.
Shamarah Giannetto 33:13
And when you don’t have the answers, you kind of it’s a struggle, you know. And I think, for me when I was in the early stages of recovery, and I’m probably still in the early stages of recovery compared to somebody who’s the, you know, 12 years out. But I remember the physical therapist thing.
Shamarah Giannetto 33:38
Because I was asking, What can I do, you know, like, what can I do? And they said, you should try yoga, you know, just do some really basic poses, on all fours, just lift one arm and lift the other arm and, you know, do load bearing things to just reconnect your, you know, neurons to your body.
Shamarah Giannetto 34:01
Which is a really I know, that’s probably not the right way to say it, but it’s close enough. And I do think, that that approach of just kind of observing and not judging has been helpful for me. Just observing, observing, wow, this, you know, this is harder for me to do today.
The Benefits of Yoga for pontine ischemic stroke recovery

Shamarah Giannetto 34:27
And then another day, Wow, I did that I did a full downward dog without kind of tipping over. And so I’ve been doing that several days a week. And so when you interviewed Rachel I heard that podcast with the stroke recovery yoga.
Shamarah Giannetto 34:45
I was excited because that was what was working for me and I felt like you know, this is how come nobody’s talking about this. This is wonderful.
Shamarah Giannetto 34:55
And because it does help with somebody like me who’s been used to kind of more active activities like mountain biking and kickboxing and, you know, weightlifting, to go to yoga. That is not me. But it is now. And I’m grateful for it because I think it’s helped me.
Bill Gasiamis 35:16
Did you reach out to Rachel?
Shamarah Giannetto 35:18
I did. She and I are doing a chair session tomorrow, I think.
Bill Gasiamis 35:23
Oh my gosh, that’s so fantastic to hear. I’m so glad you reached out. So yoga for stroke recovery. That was episode 249, Rachel Jarmusz. And she was hoping that people would reach out to her. So I hope that more people are other than just you, that’d be great. She’s a stroke survivor.
Bill Gasiamis 35:47
So she gets it. She knows exactly what we’re going through. And, interestingly, you mentioned yoga because I tried yoga as well. And I got a little bit disheartened by it because I’m very function functioning. But the yoga reminded me of where my deficits were.
Bill Gasiamis 36:09
And because it wasn’t being run by somebody, like Rachel, I couldn’t integrate myself into that class and feel like I was going to kind of get a lot out of it, you know, it was being run by amazing, brilliant young, 20-year-old girls, who I’ll have to bid for the fact that they’re up there doing that kind of stuff, but it just wasn’t going to be for me, you know.
Bill Gasiamis 36:37
I need to find the right kind of space, and there isn’t one around where I live. So I kind of let it go. But I did see the benefit of all I also did in the interview, which I did with a NAT Baniel. Who was a therapist who doesn’t do yoga, but what she does is put a lot of people with neurological conditions on the ground.
Bill Gasiamis 37:05
And she makes them for lack of a better word, roll around and get used to feeling the ground under their body so that they can go back to kind of retraining the brain and the sensory neurons and all the neurons to connect to the body like you described earlier.
Bill Gasiamis 37:31
And she has a great approach because it’s, it’s founded in kind of back to basics kind of stuff, where you don’t get somebody who can’t walk after brain surgery up on their feet to walk, what you do is you get them on the ground.
Bill Gasiamis 37:50
And you teach them all the skills so that they can engage every muscle the way that in engaged, you know when they want a baby and then slowly get them up and you roll them and she manipulates them in a very gentle way. So it’s yoga makes complete sense to me when I hear about it.
Bill Gasiamis 38:09
So it’s good that you can find another way to be physical in this gentle way, which is also therapeutic to the body. And I mentioned it’s therapeutic to the mind, because it’s a kind of a calm, relaxing, kind of mid, you know, practice.
Bill Gasiamis 38:35
So it allows you to bring your blood pressure down, your stress levels down, your cortisol levels down, it allows you to come into a bit more of a balance to be more mindful at the moment to connect with your body and pay attention to what it’s doing. So we’re glad you found that.
Shamarah Giannetto 38:56
Yeah, and a lot of what and I didn’t go to class as an I go to very few classes, I found videos online and I just did, I did restorative yoga, I did therapeutic yoga. So I started small. And a lot of it was just, you know, there’s like these mantras that kind of go through it’s just observed this, observe this.
Shamarah Giannetto 39:18
And I think it is just helpful to kind of, you know, a few you are your baby. You know, like we see our children, we go, Oh, I think they’re hungry, you know, and it’s not they’re screaming about it, but okay, they’re hungry. We observe and we don’t judge, you know, and that’s hard to do when it’s ourselves. But what a gift to give yourself just observe.
Shamarah Giannetto 39:44
You know, this was hard for me and so I think, I don’t know if being a special education teacher again prepared me for this. But just that ability to say like, wow, you know, like we need to work on this specific behavior or we need to work on Under skill, that’s kind of just how I treated myself as I need to work on this skill.
Shamarah Giannetto 40:04
And I don’t know what my benchmarks are going to be or when I’m going to reach them. But that’s my goal is going to be to stand on my left foot and, you know, close my eyes for two seconds.
Bill Gasiamis 40:20
The thing you said, I need to work on this behavior. That’s, I think, really insightful on the show if you picked up on how insightful that is. Because if your behavior is getting in the way of you, healing and recovering, you’ve got to work on that behavior.
Bill Gasiamis 40:36
If you’re getting shitty at yourself, because you’re not further along, and if you’re getting angry at yourself, and if you’re being irritated when you can’t do the downward dog that day, that’s getting in the way of your recovery. And you do have to change your behavior, how you behave to yourself.
Shamarah Giannetto 40:57
Yeah, yeah, you do. And be kind to yourself. I mean, I think I think that is a hard thing to do.
Shamarah Giannetto 41:06
And again, like just observing that behavior, you know, when you’re, and I think that’s where the journaling helped me be and turning it into gratitude when I was getting down in the dumps about things and just realizing that things may be tough now.
Shamarah Giannetto 41:22
I’ve had a good life, and I plan to have a good life, you know, like, I’m in the middle right now, and can’t kind of see the forest for the trees that, you know, soon I will, I’ll get to the top, you know, and be able to look around and go, Well, I was right there. But I know for everybody, it’s different.
Shamarah Giannetto 41:40
And I was when I found your podcast. I was feeling like, man, they told me six months. And that’s all I have, like I’ve six months to get to this part. And I’m not getting there. And then when I started hearing other stroke survivors talk about their, you know, experiences and how they are still seeing improvement after years and learning things.
Shamarah Giannetto 42:07
That brought me peace. And so I do think for anybody who you know, is in this situation, just seeking out other stroke survivors. And so I’m so glad you have this podcast. Because for me it is like the day that I found it. I remember coming home, and I was so excited.
Shamarah Giannetto 42:24
And I was like, I found this podcast, and there are other stroke survivors. And they’re young. And, you know, they’re, you know, it was like, Oh my gosh, there are other people like me, because I didn’t see that when I was in the hospital. And I didn’t see that.
Shamarah Giannetto 42:40
You know, a lot of the doctors, I feel like now it’s hard for me to get appointments or to be not taken seriously. I mean, they have to I had a stroke. But I’m young, and that’s what they all keep saying is like, Oh, you’re so young. And it’s like, Yes, I’m young. And I had a stroke. And I’d like to, like see my daughter graduate. You know, I’d like to see her do whatever she’s going to do in life and help me get there.
Bill Gasiamis 43:09
That’s a beautiful request. That’s a beautiful request. I love that. Just help me get there. I love it.
Shamarah Giannetto 43:16
Yeah, that feels
Bill Gasiamis 43:17
wrong into perspective. You know, that just puts it all into perspective. It’s like, just help me get there. You know, what you’re saying is, I’m not expecting you to be perfect. I’m not expecting you to solve all my problems. Just help me as much as you can to get me closer to them. I love that.
Bill Gasiamis 43:36
Is it a reality? Yeah, that’s a lovely way to say it. So um, you spoke about your emotional your mental recovery, and your physical recoveries? Are you the kind of person who’s able to separate the mental recovery and the emotional recovery? Do you have a sense of where that’s at? How’s that? How that’s going?
Shamarah Giannetto 44:00
I think so. I think it’s it’s felt so separate, just because one has been so much more rapid than the other. And so the mental part that I’m dealing with right now is what now? You know, I’m expected to go back to work. I don’t know what capacity if it’s going to be part-time. I don’t think I can do it full-time.
Shamarah Giannetto is dealing with mental fatigue
Shamarah Giannetto 44:29
I’m still at the stage where my mental fatigue is kind of controlling my days. You know, it’s just the way it is, is Rachel and I were talking it’s stroke gives you like this direct line of communication to your body and your brain, right?
Shamarah Giannetto 44:45
Like I don’t have a choice but to listen because when I hit a wall, there’s no second wind coming. I have one wind and that wind when it’s gone. I rest and that surrender has been hard. Because we, you know, for 46 years, I kind of spent ignoring those cues, right?
Shamarah Giannetto 45:11
And so now it’s just being very tuned into that, like, Okay, I’m tired, I’m gonna go lay down in a dark room. So making that transition back to work and kind of thinking about, what I want to do. What about what do I want to be when I grow up?
Shamarah Giannetto 45:30
Can I go back to being that person that kind of looks at it, like, there’s before structure, Mara, and now I’m post-stroke, Mara, and post-stroke Shamarah, may not be able to have the same level of patience, or the same critical thinking skills or problem-solving skills that you know, the rapid kind of decision making that’s required?
Shamarah Giannetto 45:56
And I don’t know if I want to go back to that, you know, it’s like, I admire who I was before what I was doing. But I think, I think I might have to do something different. And that is scary.
Bill Gasiamis 46:13
So gorgeous, and beautiful to hear. That’s the thing about it, right? So I am a completely different version of myself, my wife still gets the shits, because I look at her with the same look. Or, you know, I always put my foot in my mouth in the same kind of way.
Bill Gasiamis 46:30
But that’s like exterior surface kind of stuff deep down inside, I’m a completely different version of that person, who, who was heading into stroke and had no idea what it was heading into, you know, completely different.
Bill Gasiamis 46:46
And what you suggested is that this is an opportunity for you to wipe the slate clean, and find a new way to do your life away that serves you and suits you better and is more gentle, and is less pushing and more flowing, just going with the flow.
Bill Gasiamis 47:05
The old me wasn’t a podcaster not only wasn’t a podcast, but I also didn’t know what a podcast was, you know like had no idea. And the old me didn’t have a public face. A public persona, especially not a global one. And the old me never spoke about serious topics like stroke, and stroke recovery, and emotional recovery, and mental health, and all that kind of stuff.
Bill Gasiamis 47:32
I did all that stuff, in some kind of way on my own without mentioning it to too many people. I certainly didn’t have a following audience a topic of passion. I certainly wasn’t an author, I never wrote a book. You know, the old me never did any of that stuff.
Bill Gasiamis 47:49
So the new me has had the opportunity to go, you know what, I’m going to transition from my old way of life to a new way of life. And I’m going to bring you the skills or the things that I learned to push through and overcome this new part.
Bill Gasiamis 48:05
But I’m not going to do the tough through the brick wall kind of way, I’m going to take one brick off at a time, and I’m going to create a cavity that I’m going to walk through, I’m not going to just smash through the damn thing, and I’m just gonna give myself time.
Bill Gasiamis 48:19
And then what’s happening is that’s more gentle. And one of the biggest challenges is right now, literally a couple of hours ago, I received an email from the person helping me write the book. And they’re not writing it for me.
Bill Gasiamis 48:31
But they’re coaching me to get through all of the down parts of the writing, which is the first frustrating, hard, difficult part. And, you know, she has timelines and deadlines, and she has all that stuff that she tries to make me stick to, I just can’t stick to them.
Bill Gasiamis 48:47
Because I’m not writing it for anybody else. Under those circumstances, I’m going to write it in my own time. And it’s going to take as long as it takes, and I’m sorry, if we’ve, if I’m stretching the friendship, but I am at that point where I can’t just wind it up.
Bill Gasiamis 49:04
And it’s because I’ve got to use a stroke brain to write a complicated book about the 10 steps. 10 steps to make people feel like a stroke is the best thing that ever happened to them. But that is not an easy thing to do. And I can’t apply my brain the way I used to apply it.
Bill Gasiamis 49:24
And when I could apply I never did. So I’m learning not only how to apply this new, weird, strange brain, but also I’m learning how to write a book and do something that 31 We’re talking about. Like that 45 years of my life never happened. You know, I wrote an essay.
Bill Gasiamis 49:48
I never wrote a blog post. I never did anything you know. So what what this has done has given me a new sense of who I can become and what I can achieve. Dave, and, and, and how long things need to take and that it’s okay to have long-term goals.
Bill Gasiamis 50:07
And to just move through them step by step, week by week, month by month and just see how far you get, instead of getting frustrated with, Oh, my God looking at a book and going on never fill 250 pages with text and then giving up on day one, how can the ad people do that? And just putting it away?
Bill Gasiamis 50:25
Right? Yeah. So you’re saying is an amazing thing that you’re saying? You’re already talking the way that I’m talking? And I’m 12. And I’m approaching, you know, beyond? Yeah, I’m approaching. We’re just past the limit of 13. I’ve just passed in the past 11 years, out of the first stroke, right? So yeah, it’s brilliant. You can kind find a new way to be you’re going to connect with people differently.
Bill Gasiamis 50:58
And you’re going to have a better insight you’re going to gain wisdom from this thing. And wisdom only comes at certain times in your life. Having a parent is one of them, serious health scares, and otherwise, perhaps losing a loved one is another one. And you know, all these different things. So I love how you’re thinking and how you’re tracking.
A recovery mindset is a gift

Shamarah Giannetto 51:32
I’m trying. Yeah, but, the thing that I just, and I haven’t spoken to a whole lot of other stroke survivors.
Shamarah Giannetto 51:51
And so hearing the stories, I think, is helpful. And I know that there are networks that I can go into. But when I’ve spoken to other stroke survivors, you know when a lot of us are? Well, when and even hearing people on your podcast, it does feel like a gift.
Shamarah Giannetto 52:16
But it feels like a gift that doesn’t have strings attached, but it has grown attached. And so you have to, you know, you have to do the work. And I think I’ve heard you say this is like you have to advocate and be that recovery mindset for yourself. And getting into that recovery mindset. I didn’t even know that was the thing.
Bill Gasiamis 52:44
So I told one of the books, recovery mindset, that’s it. If you get that you’ve won a big part of the battle. Because underneath in a recovery mindset comes a ton of things. It’s like having a gratitude journal. But it’s a recovery mindset. So what do i Is this helping me recover or not?
Bill Gasiamis 53:03
Is this helping me heal or not? Is this serving my recovery or not? That’s what basically recovery mindset is, it’s not, I’m going to recover, I’m going to recover, I’m going to recover. It’s not that it’s just checking in with yourself. What if I go to bed at one o’clock in the morning, and then try and wake up my child and take her to bed? Is that going to serve me? Is that going to serve my child?
Bill Gasiamis 53:24
Is that going to serve my husband? Is that going to serve my family? My recovery? That’s when you ask those questions, and that’s a recovery mindset. It’s really simple, right? But people have a lot of people like, hopefully, what they do after stroke is reassess the way they approach life.
Bill Gasiamis 53:43
Because if they bring old habits and behaviors to stroke recovery, that didn’t serve them, they’re going to 10 times not going to serve them. Yeah, going forward, you know?
Shamarah Giannetto 53:58
Yeah, I had to make a list early on about things I could control in my recovery, and what I couldn’t. And that was helpful because I was dealing with this timeline in my brain that doesn’t exist in reality.
Shamarah Giannetto 54:17
And so just go into that, making that list of what I can control and a lot of it was just, I can control me, I can control my responses I control. You know, that question of whether is this serving me I quit drinking alcohol about a little over a month before my stroke. Because it wasn’t serving me.
Shamarah Giannetto 54:37
I didn’t have a problem drinking. It just wasn’t serving me. I didn’t know. I was getting headaches. I was not sleeping. Well. That’s not a great way to go about life. And so luckily, at this end of recovery, that wasn’t something I had to give up. You know, and now I have an even better to no better reason to never drink again. But it wasn’t serving me to begin with.
Shamarah Giannetto 55:07
And, it is something that I’m asking a lot about, you know, I need to make an income. I need to bring in money. We live in California, it’s very expensive here. A lot of people don’t live on one income. And I’ve had my career I had my daughter late in life.
Shamarah Giannetto 55:26
And so I already had a career, I’d had all those things before. And so it was just like, now I’m a parent, and I have a career and I do these things. And then finding I just really unloving being a parent. And I’m getting this time to be her parent, which I’ve never really had.
Bill Gasiamis 55:45
That’s a blessing. It’s a gift.
Shamarah Giannetto 55:48
Not I mean, and, and I think for her, she’s seeing me have to say, hey, I need to stop, my brain is tired. I need to take a break. My brain is tired. I need to rest. My brain is tired. So she’s learning things for me. And she might be joining us now. Yeah. Hi. That I never saw my parents do you know, because they didn’t have a reason to?
Bill Gasiamis 56:18
Oh, yeah. Did I make your mom wake up way too early? Sounds like I woke up the whole family.
Shamarah Giannetto 56:30
No, she’s this is her normal time. Okay, six, it’s 6 am. Here.
Bill Gasiamis 56:35
Yeah. So that’s brilliant that you’re, you’re doing exactly that you’re leading by example, right? So you’re able to sit at a different example than most of us do. Now, I know that I didn’t set a good example for my kids when they were young. Now. But I was 22 when I had my first son. So I didn’t know any better.
Bill Gasiamis 56:55
I was just, I was just guessing. And I was getting really bad. But what’s cool is that I got the opportunity when they were 11, and not 10, or something, you know, when I had the stroke, that 11 and 15, I got the opportunity to redress some of those things that I knew that I was doing wrong.
Bill Gasiamis 57:21
But I knew I was doing wrong even back then. But I couldn’t make the changes that I had to make because there wasn’t an urgency around. Or it wasn’t as serious as I thought it was, or, you know, I played it down, right?
Bill Gasiamis 57:35
So then when we got them being nearly teenagers, one of them was a teenager, the other one, nearly a teenager, and I realized I might not be around and I was concerned about what my legacy might be in their minds and their hearts. You know, I had that time, I had exactly that time to set a good example of how to overcome adversity to know how to take responsibility, how to have the right mindset.
Bill Gasiamis 58:00
And, they’re not they haven’t necessarily gone with it and just ran with it. But what I hope is when they get older, and maybe when I’m not around, they’ll go.
Bill Gasiamis 58:12
And if they have to struggle with a health condition they might go in, I remember how my dad went through this, you know, I might take a couple of things out of that book, and maybe apply them to my recovery. That’s all I can do, we can only do that. And sometimes I enjoyed having all my time at home alone when my wife went back to work.
Bill Gasiamis 58:33
And then I enjoyed being home when they came home from school. Yeah, that was cool to be home at like four o’clock or whatever time it was that they were coming home from school. And I was able to just attend to them in a way that I normally couldn’t attend to them.
Shamarah Giannetto 58:50
Where I’m struggling still is, you know, again, with, you know, being so early in the recovery. I just don’t have the endless energy, parenting takes a lot of energy. Parenting and working takes a lot of energy. You know, like, just, it’s so interesting to observe just how much energy goes into having a conversation with a six-year-old, I imagined with a teen as well.
Shamarah Giannetto 59:19
I taught high school I remember, you know, and I wasn’t a parent, I was the teacher, but still it was, you know, there were complexities, you know, involved in that. And so, I think what I have been trying to do is kind of hack my system and figure out like, if I conserve energy mid-day, will I have more in the afternoon? And I’m just finding no, the answer’s no, not yet.
Shamarah Giannetto 59:46
Not yet. Not yet. And so it’s just and it’s, you know, I had a physical therapist, say just notice it and notice that you know, could take for, you know, four to six weeks at that level. And then you’re gonna see He change, or maybe not, you know, but just observe and just when you’re aware of where your energy is, you kind of know how to schedule your day.
Shamarah Giannetto 1:00:09
And right now I have the freedom to schedule my day. But soon I will not have that same kind of freedom. And that feels kind of daunting, like, I’m not ready. And I don’t know, you know if that’s a conversation to have with the doctors just to say, I don’t think I’m ready. Because physically I could do a job. Mentally, I can’t have it with your job, however, with
Bill Gasiamis 1:00:33
your employer.
Shamarah Giannetto 1:00:38
good conversation to have with my employer. Yeah.
Bill Gasiamis 1:00:40
So what happened with me is, I went back to work and all the things that you’re describing, I felt and I went through, and it was hard. So went to, so I had, I had a one hour. And I went and worked for somebody in an office where there wasn’t my job at a property maintenance business.
Bill Gasiamis 1:00:56
So I couldn’t work in my own business, I went for it with a friend of mine to work in an office that he got me the job in, you know, it was a really basic dead-end kind of job. But it was enough to kind of start transitioning me back into working life.
Bill Gasiamis 1:01:13
But when I got there, the first couple of weeks sitting in front of a computer for eight hours, I was wiped out by about 10 o’clock, 1030 in the morning. And then and then I was useless. But because he knew my situation, he was able to cover for me and I was able to get away with doing not a lot, right?
Bill Gasiamis 1:01:30
But then when I came home, I’d be wrecked at home, because then it’s another hour’s drive home. And then I’ve got to get into the mode, the mode for dinner, and homework and all that kind of stuff.
Bill Gasiamis 1:01:44
So that was challenging. So what happened, though, what I noticed is I started to improve my ability to focus and concentrate. So I was there for three years in total. But in that time, I started to see significant improvements in my ability to be able to focus, and that focus came and went, but some days when it was there, it was really good.
Bill Gasiamis 1:02:14
And, that kind of gave me the benchmark for okay, we’ve got this far this time and work towards getting that far again. And if we can go beyond that we can.
Bill Gasiamis 1:02:25
But that also meant that I had to take a lot of breaks, and people had to know what I was capable of and what I wasn’t capable of swept lights above my head, and I needed to have them off because they used to tie me out and then drain my energy even further.
Bill Gasiamis 1:02:43
So happy headphones are on in the office. So if we didn’t need to talk to each other because it was loud, I put headphones on No, with no music, just headphones, just soccer muffle the sound. So that I can get less stimulation in if I can minimize the stimulation, or that type of stuff works.
Bill Gasiamis 1:03:05
And I remember with my naps when you were talking about, you know, your you can rest and have a nap. But with my naps, I remember like, like my children, I remember when there were bits, say between one and two there would be X amount of hours nap during midday.
Bill Gasiamis 1:03:22
And then as they got between two and three, their hours decreased and decreased and then they went napping at all. And that’s exactly what I was doing my naps were taking an hour, then they were taking 50 minutes, and then they were taking 40 minutes.
Bill Gasiamis 1:03:34
And eventually, they decreased and then I wasn’t needing them. But sometimes I needed a recharge at around three, or 230, or something like that. And I would even go into the car, and meditate and sleep and good 15 minutes at lunchtime in the car if I could. So that worked as well.
Bill Gasiamis 1:03:55
So you do anything you can. But six months is a very common thing that I hear people get told by the doctor should be able to get back to work in six months, and they all work for it. Some of them get there. Many of them get there and they hit a brick wall. And then it’s even harder.
Bill Gasiamis 1:04:15
So start that conversation with your employer and let them know what he knows about the unknowns. This is because I don’t know what it’s going to be like, I don’t know how much work I’m going to be able to get done.
Bill Gasiamis 1:04:30
I don’t know how productive I’m going to be for how long for how many hours and so on. So just give him information about what you don’t know. And then you can just send him this is what I do know. I’m happy to come to work if you want me to come but I don’t know anything else.
Shamarah Giannetto 1:04:45
I will be here.
Bill Gasiamis 1:04:49
I’ll turn up on day one.
The importance of time management for Shamarah Giannetto
Shamarah Giannetto 1:04:53
Yeah and even I’ve noticed with myself that you were talking about reading your book and just working with the stroke brain. Time management seems to be something that is just a mystery to me right now. It takes me so much longer to get ready.
Shamarah Giannetto 1:05:14
It takes me, you know, I’m still getting my daughter off to school every morning and things like that. I do not have deep worries about myself. But that combined getting me ready and her ready in the morning because my husband usually goes to work pretty early.
Shamarah Giannetto 1:05:32
It is going to be a new thing, you know, like, we’re both going to be late for a while. And that’s kind of just been my approach even in the earlier days, just getting her to school, I had to tell the teacher she’s going to be tardy, and it’s not her fault. It’s mine.
Shamarah Giannetto 1:05:49
Because like, there’s this weird time wormhole that happens. And suddenly, we’re 15 minutes late, and I don’t know what it is. But it just happened. And so that’s yeah, it’s just, it’s just something that, you know, I’m observing. And it’s like, well, I’m working on it. But at the same time, it just, it’s kind of who I am, right?
Bill Gasiamis 1:06:17
Yeah, getting ahead of it is cool. Like what you do with the teachers and letting them know, that’s cool, because then that just takes the pressure off that says, we’re going to do our best to get here.
Bill Gasiamis 1:06:29
We’re not going to worry about not getting there, we’re not going to scream at each other or rush or do any of that stuff. And then if we get that bonus, if we get there late, well, whatever. Yeah, it’s not isn’t going to change anything.
Bill Gasiamis 1:06:44
You’ll already get into school a few minutes late, and you being a few minutes late and putting in clothes, it’s not going to change anything, there’s no appointment that you need to get to where if you’re three minutes late, then it’s the end of the world, that’s not going to make a difference.
Bill Gasiamis 1:07:01
That is a great thing to learn to just go with URC you aren’t going with the flow. You didn’t realize that you could be with one of those people. But here you are you.
Shamarah Giannetto 1:07:16
Yeah. Yeah. Yeah, and it’s good I feel like it’s a good place to come to. And people when you explain to them what’s going on, and you’ve had a stroke, it gives you this really interesting hall pass. And not that you use it that way.
Shamarah Giannetto 1:07:33
But it is something that when you share with people what’s going on? They don’t question why you’re not going to go out, they don’t question why you’re not going to be there. It’s like, oh, okay, you know, I mean, eventually, I think that’s going to change as more time as the time continues.
Shamarah Giannetto 1:07:50
But now when I draw those boundaries, or when, you know, I just shared this is why I am the way I am. People are very accepting and understanding. And that’s been a blessing too because it’s kind of a mystery when people don’t, especially if they haven’t seen stroke, or if they have seen stroke, that has, you know, really taken people a while to recover from.
Shamarah Giannetto 1:08:17
And here I am, you know, walking my daughter to school, and I’m doing these things but I’m saying I don’t think I can volunteer for the school carnival because it’s too loud. You know, and I don’t have the energy for it, because that’s happening right in my window of where I need a nap or I need to be resting. But yeah, people are very understanding,
Bill Gasiamis 1:08:41
we turned down a lot of events, I still struggled to go to the football here, because it’s too loud and for too long. And then, also used to leave people’s parties and go and slip on their bed for an hour. I’m not gonna ruin the party for everyone, and I want to be here.
Bill Gasiamis 1:09:02
I just can’t be here right now I’m gonna go lay down on your bed. If you don’t mind for an hour. Go do that. Kind of get a little bit of a refresher and then go back and join everybody. And then often we left early as well. So guys, you know, it’s 11 o’clock, it’s one hour past my bedtime. I’ve gotta go.
Bill Gasiamis 1:09:20
Thanks for seeing it. But I can’t, I can’t keep it up. And, then I also did milk the I’ve had a stroke routine. I did that on purpose a few times and got away with it.
Bill Gasiamis 1:09:34
But then it got old, like you said, after about three years of running that after brain surgery running that line got old eventually because they could kind of tell the extent of my recovery and when I was putting it on, you know. So I’ve stopped doing that now.
Bill Gasiamis 1:09:55
I know that you’re gonna get ready for another day. So what I want to do is wrap this up for you. Thank you so much for being on the podcast. But before we go on ask a couple of questions. One of them is what has strictly taught you?
Shamarah Giannetto 1:10:13
It’s a great question, I think stroke has taught me, again, kind of just that direct line of communication with my brain and body to listen. I read all this the other day because I was worried I would forget
Shamarah Giannetto 1:10:34
to ask for what I need, and to not feel any guilt or shame about it, I need to rest, I need help. That my worth isn’t tied to producing something.
Becoming more observant and curious
Shamarah Giannetto 1:10:51
My worth is just tied to thinking it’s helped me with just being curious and observant with myself and just with others, and decreasing my judgment, you know, sort of just don’t know what’s going on. And I don’t feel like I’ve ever been a harsh, judgmental person.
Shamarah Giannetto 1:11:18
But I think we can get into those routines. But so instead of that, just being curious and observant. And I think it’s taught me that baby steps are, is still moving forward, you know, baby steps or steps. And whatever that is, and, to be aware of, however, I wake up that day feeling that’s going to set the tone for the day.
Shamarah Giannetto 1:11:50
But it can also not be like the harbinger of doom, if I’m feeling tired, I can still have a really good day and be tired. I can still do things and be tired and barely be struggling, you know, struggling like the other day, I was walking around looking for my phone, and it was in my hand. And so it’s like, is this middle age or is the stroke?
Shamarah Giannetto 1:12:17
And, I think I’m fortunate too that the stroke didn’t affect my personality, it didn’t affect my sense of humor and my ability to laugh at myself, and to see the humor and things. And I think that’s important to stroke has reinforced the gift of humor, and just being able to still laugh. I’m still enjoying life.
Bill Gasiamis 1:12:46
Brilliant. You might have answered this next question, partly with that answer as well, because they’re similar questions. And you’re not quite a veteran stroke survivor. You’re just very early on. So you former baby stroke survivor. Yeah, yeah. But I’d love to ask you. What are the some?
Bill Gasiamis 1:13:05
Well, I’m not sure if the right words, advice. But what would be some advice you’d give somebody who’s listening to you now? And you know what? They are just on the very first couple of weeks of stroke recovery because we have some people like they’re fine in the podcast as well.
Bill Gasiamis 1:13:18
And I reckon everyone who’s been in stroke recovery for more than somebody else is going to have something to share. What would be the one thing that you advise people?
Shamarah Giannetto 1:13:32
I know if there’s one thing I think I hope people who are in the early onset stages of stroke recovery, find your podcasts. Because I think it is a very positive podcast when it comes to, you know, like when you’re wrapped up in that hospital world of people checking your vitals checking blood giving you bad news or news, that doesn’t mean anything because it’s nothing new.
Shamarah Giannetto 1:14:04
To just know, that it gets better. And it gets, it can get good. If you want it to. You can take control of some things. And to find something that that you enjoy doing, that you can do, you know, a couple days a week or every day that just will make you feel grounded and happy.
Shamarah Giannetto 1:14:38
If that’s meditation, if that’s prayer, if that’s getting up and moving or you know, petting your dog, just to do it every day. And then do add to it. You know, just keep growing. That’s my baby wisdom.
Bill Gasiamis 1:15:00
That’s beautiful wisdom. There’s beautiful wisdom. On that note, what I’m going to do is I’m going to put it out there, I’m going to say.
Bill Gasiamis 1:15:06
So if you’re a stroke survivor listening to this, and you’ve heard this, and you agree with some of the stuff that Shamarah shared, I want to just bring your awareness to, if you do think this podcast is useful for other stroke survivors, please do share it with people, that’s the only way they are going to find it, you need to share it and let people know you need a comment.
Bill Gasiamis 1:15:32
On YouTube, you need a thumbs up, you need to subscribe because then that makes the algorithm and all that weird stuff work in the podcast’s favor. And then you would do me a massive favor if you went to iTunes and left a review a five-star review if possible.
Bill Gasiamis 1:15:51
Or in review, but not a bad one. Don’t leave bad reviews. And then, and then do the same thing at any other podcast app, whether it’s Spotify, or whatever because it’s just that’s actually what helps people recover.
Bill Gasiamis 1:16:07
And if you remember what it was like when you discovered it, and how you felt when you felt like you weren’t alone, and this wasn’t happening just to you, then that’s the gift that you’re gonna give to other people. So Shamarah thank you for that.
Bill Gasiamis 1:16:20
I appreciate you joining us on the podcast and I look forward to hearing about how your ongoing recovery goes.
Shamarah Giannetto 1:16:29
Thank you. Thank you for having me. And thank you for doing what you do.
Bill Gasiamis 1:16:33
Thanks for joining us on today’s episode. I hope you enjoyed our chat. To learn more about my guests including links to their social media and other pages and to download a full transcript of the entire interview. Go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:16:48
If you’d like to support the show, and I hope you do, please leave this show a five-star review and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube comment below the video I will respond to your comment.
Bill Gasiamis 1:17:02
I love seeing comments below the videos like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. If you are a stroke survivor with a story to share about your experience, just come and join me on the show.
Bill Gasiamis 1:17:18
The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for someone who is a stroke survivor. Go to recoveryafterstroke.com/contact and fill out the contact form.
Bill Gasiamis 1:17:32
As soon as I receive it, I will respond with more details on how you can choose a time that works for you and me over Zoom. Thank you again for being here. And listening and commenting and leaving a review and sending me amazing emails. I appreciate you see you on the next episode.
Intro 1:17:53
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals.
Intro 1:18:00
Their 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, the content is intended to complement your medical treatment and support healing.
Intro 1:18:27
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.
Intro 1:18:38
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 1:18:47
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 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:19:14
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Intro 1:19:25
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The post Pontine Ischemic Stroke | Shamarah Giannetto appeared first on Recovery After Stroke.
1 hr 20 min
June 12, 2023 MindMotion Neurorehabilitation For Improved Limb Movement | Angela Greene
MindMotion GO is a home-based physical therapy solution that enables stroke survivors to access high-intensity occupational therapy from the comfort of their homes for up to 12 weeks.
LinkedIn
MindMaze
MindMotion GO
Highlights:
00:54 Introduction
01:50 Angela Greene’s Background
02:54 What is high-dose high-intensity rehab?
06:41 The MindMaze rehab
08:48 What is the MindPod
11:41 How to get started with MindMotion
17:52 Educating clinicians on how to use MindMaze
23:54 When does MindMotion GO become necessary?
31:58 How long does the MindMotion GO therapy take?
41:03 Importance of maintaining rehabilitation beyond the plateau
49:29 A quick walkthrough of MindMotion GO
57:46 Where would people go to find more information about MindMaze?
Transcript:
Angela Greene 0:00
With our solutions, you could start in the inpatient rehab, and then it could be deployed home with you. And you just need to have a therapist overseeing your program because it has to be prescribed, it’s an FDA-approved device as a prescriptive device, okay?
Angela Greene 0:15
And the therapist has to guide you in the recovery process. Now with some settings, the patient comes in and has an initial evaluation, let’s say, outpatient. And then they go home, they could have this device sent home and it could be completely remote.
Angela Greene 0:29
What we call asynchronous, they don’t have to come back in. The therapist could do a telehealth consultation and we could see your program could see whether you’re doing your homework or not.
Intro 0:42
This is the recovery after stroke podcast with Bill Gasiamis, helping you navigate recovery after a stroke.
Introduction – Angela Greene
Bill Gasiamis 0:55
Hello, and welcome to episode 254 of the Recovery after Stroke podcast. My guest today is Angela Green, who is the lead therapy Integration Manager at MindMaze, a digital therapeutics company that is building a platform for universal brain health and recovery.
Bill Gasiamis 1:13
Previously, Angela was an occupational therapist for about 20 years. And she worked with a variety of patients from traumatic brain injury to stroke and dementia, as well as Parkinson’s disease. Technology is changing the way rehab is practiced for people with brain injuries. And it’s changing the results as well. Angela is also at the center of that shift and those innovations. Angela Greene, welcome to the podcast.
Angela Greene 1:41
Thank you. Thank you for having me tonight.
Bill Gasiamis 1:43
My pleasure. Thank you for being here. Tell me a little bit about your background before we get started in the conversation.
Angela Greene’s Background
Angela Greene 1:50
Okay, well, I’ve been an occupational therapist for almost 30 years. My specialty is neuro rehab and neuroeducation. I’m a clinical educator, I teach other clinical professionals vestibular rehab, as well as upper extremity for the hemiplegic arm, and different dynamic splinting techniques that are available to try to increase function.
Angela Greene 2:15
And I also have a background in health informatics, the electronic medical record. So I’m kind of a Jane of all trades, but leadership background in operations. And the reason I got involved with that was because I have a vision in my mind of what I think great clinical care can be.
Angela Greene 2:34
And I think we could deliver it. And so far, I’ve been pretty successful with it. And I am the lead therapy Integration Manager here in the United States for MindMaze, which is a neuro digital prescriptive therapeutic device. We have different solutions that we offer people for high dose high-intensity neuro rehab,
What is high-dose high-intensity rehab?
Bill Gasiamis 2:55
High dose high-intensity neuro rehab. Now when I hear high dose, usually that sounds like I’m taking the high dose medication of some sort, but you’re talking about high dose rehabilitation. What is that specifically? What does that mean?
Angela Greene 3:10
So most times, a lot of the clinical research is indicated. If you’re in inpatient rehab, you may move your arm, and your upper extremity 20 times the entire day. And most of that occurs during the actual therapy session. At lower extremity, you may move your lower extremity with ambulation, maybe 300 times over 24 hours.
Angela Greene 3:32
And all of the evidence indicates that is not enough. You need to be moving 1000s of time you hear like take 10,000 steps, you need to be doing that with your arm too. And there’s not a lot of opportunity for people to do that. So with our solutions, you’re moving anywhere from 40 to 60 times a minute, which is a very high dose of high intensity.
Bill Gasiamis 3:55
Is that something that’s done in the clinical can that also be done at home?
Angela Greene 4:01
Well, that’s one of the things I love about our solutions is that it’s thoughtful about what starts in the clinic. And it could be deployed to the comfort of your home. So I joke around and say you could do your therapy in your bunny slippers in the comfort of your own home.
Angela Greene 4:16
You don’t have to load up and worry about transportation if you’ve had a stroke because many people can’t drive or they’re dependent on caregivers to take them. So you could do it right in the comfort of your living room and not have to worry about all those other things.
Bill Gasiamis 4:31
And many people are in remote locations.
Angela Greene 4:35
Yes. And that definitely could help. I’ve lived in some pretty remote locations like Alaska, and they did telehealth up there but this would be the ideal product that you can take home with you and use for 12 to 15 weeks, five days a week.
Angela Greene 4:51
You know for about a half-hour 20 minutes to a half-hour day depending on what your therapist has to be prescribed by a therapist. So a therapist is always over for senior care, but it’s a prescribed home exercise regimen.
Bill Gasiamis 5:04
Okay, so one of my coaching clients, I just got off the coaching session with them now, he’s a gentleman who is roughly in his 80s, and had a stroke. And one of the conditions that he has to deal with is that he’s, I think it was his left hand, we’ll go with the left, his left hand is not functioning as it was before the stroke.
Bill Gasiamis 5:27
And as a result of that, it’s quite heavy, and it’s causing an impact on his shoulder. Now he has it strapped, in some situations to minimize the impact to the joint. But then having it strapped means that it minimizes the ability for it to be used, and therefore it’s increasing potentially, the possibility of the loss of use of that arm and it’s definitely not rehabilitating it. So is that the type of person who is a candidate for this type of product, this type of solution?
Angela Greene 6:02
For these, you have to have some range of motion, and some movement available. It doesn’t have to be great because the games can be calibrated to what’s available range for you. So if you can only move five to 10 degrees, you could still play some of the games, and it has other benefits.
Angela Greene 6:20
So it’s not just the upper extremity. It’s also the lower extremity like sit-to-stand reactive stepping. I mean, it has a lot of different things in it. And as well as hand and finger individuation. We have a wonderful new device that allows you to apply pressure, and it monitors the pressure application and the release. And it’s really cool.
The MindMaze: MindMotion GO rehab

Bill Gasiamis 6:41
I see. So when I was in rehab, and I was learning how to use my left side again, walking again, and using my left arm, I use the Nintendo Wii to play Wii Tennis. So are you talking about a product that is similar in nature to that type of device where I’m interacting with something that I’m wearing and a screen in front of me, and I’m playing, for example? Well, in this case, it was tennis is that the type of solution that you’re talking about?
Angela Greene 7:18
It’s similar but distinctly different, same in that it’s fun to play. So people are very engaged and motivated to play it. I love that it gives people a chance to own their own recovery and empowers them instead of being told no and sit and don’t do, we’re encouraging you to do it.
Angela Greene 7:37
This is a version of extended reality. So you have many different types of virtual reality. So you may have the immersive like what you wear the goggles, that’s great. As for vestibular rehab, you may have augmented reality, like the PokemonGo, where you could still see the reality around you. But there’s an image projected, like the Pokemon.
Angela Greene 7:55
I’ve seen some cases of a product that projects images that is for Parkinson’s patients and helps them navigate stepping. And that’s a wonderful idea. This is an extended reality. So it only takes a short period of time for your brain to extend your personal space like this is my hand, it’s in front of me and I know it’s in front of me.
Angela Greene 8:15
But with a little trickery, and the use of the extended reality, you can project yourself onto the screen and become that avatar on screen. And the difference with the MindMotion, though, in particular, is that it can be calibrated very specifically to what your abilities are.
Angela Greene 8:32
And that’s the one that can go home with you that gives you that high dose of high repetition. It also produces a documentation system that you could see how you’re performing. From a range of motion assessment to the quality of movement, are you compensated and how much are you compensated?
What is the MindPod
Angela Greene 8:48
And the coolest thing too is it’s no marker on you. It just tracks what you have you know with a full body motion camera or hand or this other device called the IZAR, the other solution that we have immediately after having a CVA. And ideally, as soon as you’re medically stable, you can do this seated or standing it’s called Mind Pod. And the whole premise of that one is based on exploratory motion.
Angela Greene 9:12
Because most of the studies on stroke recovery have been done with primates. And it’s typically very task-specific, pick up a pellet, stick it in your mouth. It’s not ever been just play. And if you think of babies that babble, they eventually form speech and they’re just playing with sound. So it’s the same kind of concept except for the upper limb.
Angela Greene 9:31
And anything you do in mind Pod, you move a dolphin through a beautiful immersive room, it’s a multi-sensory approach, you have sight and sound happening, as well as the initiation of motion. And that protocol is for three weeks, five days a week and it’s pretty intense. It’s 60 to 90 minutes a day. By then you transition to like MindMotion Go to go home with it to continue your progress.
Bill Gasiamis 9:54
Okay. So, for example, the particular person I was talking about is based near Sioux Falls in South Dakota. Now, I would describe that in the middle of whoop, whoop. Now I’m from Australia, that’s a very Australian way to describe the middle of nowhere.
Angela Greene 10:12
Whoop whoop, I have to remember that one.
Bill Gasiamis 10:15
Yeah. Where’s Sioux Falls, South Dakota? Middle of whoop whoop. So it gives people an understanding that it’s potentially in a remote location. That means that in order for these guys to attend their sessions, with their therapists, OT or PT, they’ve got to drive for an hour and a half to that appointment and an hour and a half home.
Angela Greene 10:41
And, that’s if the weather’s good, yeah.
Bill Gasiamis 10:43
And that’s if the weather is good. And that’s it if the patient if the stroke survivor is in physically fit enough condition to do so. And because there’s a challenge around toileting, there is timing, it has to, you know, we have to play this beautiful role of timing, everything so that when that person is traveling, they don’t have to have a toilet break.
Bill Gasiamis 11:10
When they get there, they can have a toilet break. And when they get back, they’re gonna have a toilet break. But anyway, the trip in between is an issue. So the remoteness of this gentleman’s location is a barrier to regular and appropriate rehabilitation, and getting people to their home is just as big as a barrier because they’ve got to find the right person, and then they’ve got to somehow get them, there and it becomes extremely expensive.
How to get started with MindMotion GO

Bill Gasiamis 11:41
So in the situation where America is such a vast country, just like Australia, is and there are people scattered everywhere. How do you guys get in front of people who are located in remote locations, and then make it easy for them to A, access to technology? In the first instance, where they have to see somebody I suppose, and then, in the second instance, you know, how does that end up in their home and who sets it up for them?
Angela Greene 12:13
Sure. So in traditional health care, you may go through an acute inpatient stay for three days in the hospital, once you’re medically stable, they’ll discharge you, ideally, to an inpatient rehab facility, and you’ll be there for 10 to 15 days, this is again traditional, where you get three hours of therapy, one hour of upper limb rehab, with OT, and then the rest of the time, you’re twiddling your thumbs, you’re just sitting around, right?
Angela Greene 12:40
And then you get discharged to the couch at home. And if you’re lucky, maybe you have home health, and they see you once, twice, three times a week, extraordinarily rare, especially in the outlying areas, and in rural areas, okay. So you’re supposed to be working every day, 20 to 30 minutes a day, for your recovery, as much as you possibly can move in 1000s of times a day.
Angela Greene 13:02
So that just doesn’t happen. And the evidence supports it. But insurance doesn’t cover it, Medicare doesn’t cover it. It’s just very frustrating. With our solutions, you could start in the inpatient rehab, and then it could be deployed home with you. And you just need to have a therapist overseeing your program, because it has to be prescribed.
Angela Greene 13:22
It’s an FDA-approved device as a prescriptive device, okay? And the therapist has to guide you in the recovery process. Now, in some settings, the patient comes in and has an initial evaluation, let’s say, outpatient. And then they go home, they could have this device sent home, and it could be completely remote, what we call a synchronous, they don’t have to come back in, the therapist could do telehealth consultation, and we could see your program, we could see whether you’re doing your homework or not.
Angela Greene 13:49
That’s the other thing. You can’t make excuses and say my dog ate it. You know, we’re like, you know, we prescribe this much therapy for you. And you only did like 10 minutes, what’s up? You know, or somebody’s having a harder time the levels can change. We could adjust levels, challenge levels, difficulty duration, and things like that. Recalibrate it if they’re improving performance, so we could do that all remotely which is a wonderful thing. And as I said, typically somebody hangs on to this for 12 to 15 weeks at home.
Bill Gasiamis 14:19
Okay. And that gives you real data that you can actually look at later, after a certain number of weeks, and you can determine from that data, whether improvements can be whether improvements have occurred, what you need to tweak etcetera.
Angela Greene 14:32
Every time somebody plays it uploads information. So we have that data. As soon as you’re done, and you log out, it’s there. As far as how it works for deployment to home, we ship the unit to home once a person is identified. We send it directly to the person’s home it typically takes five days to arrive depending on the shipping location, and then we schedule an appointment with one of our customer service reps.
Angela Greene 14:55
So that helps them navigate a walk through the setup process. It’s not much more difficult than setting up an HDMI TV or VCR. It’s a Roku stick or you know, or fire stick or something like that it’s not much more complicated than that. Now you do have to have internet access. And I know that’s a barrier for some people.
Angela Greene 15:14
But here the FAA has agreed, like, coerced, I guess, I don’t know what the word is, with these different companies that are internet providers to provide low-cost internet and rural areas. So you know, you have to eliminate all the barriers, what are the potential obstacles for people to use this? As we navigate through that we try to figure out what are the options.
Bill Gasiamis 15:36
Okay, so there could be a process that you have to go through to get people finally onto it, for some people that be a slightly longer process, especially if they have some of those barriers that they are limited by and then some people could be a shorter process to getting evaluated and then having the product in their home.
Angela Greene 16:01
Yeah, we’re working with some clinical partners right now that have kind of the continuum from inpatient rehab to home, and talk, I was just talking with them yesterday. And they said we know five days in advance that this person is going home. So as soon as you know, the trigger has been pulled on, they’re being discharged.
Angela Greene 16:20
We start planning on sending this to their house, so they’re not more than a day or two without the device. They’ve already been introduced to it and impatient and they’re going to continue without patient oversight.
Angela Greene 16:31
Sometimes the barriers are like getting a physician’s orders to be able to get in to have therapy. If you’ve been discharged from therapy, you have to come back in. Sometimes therapy clinics are overwhelmed. I live in Florida right now, and I could tell you we call it Snowbird season. Everybody’s coming down here. You’re not having an appointment anytime soon. It’s really tough to get in.
Bill Gasiamis 16:50
Right? Okay. So Snowbird season, that’s the season where everyone comes from the snow to Florida to warm up.
Angela Greene 16:58
And then we want to get hot. Yeah.
Bill Gasiamis 17:01
Then it goes from no availability to an abundance of availability.
Angela Greene 17:05
Yes. It’s very seasonal. Yeah. Understand?
Bill Gasiamis 17:09
Okay. So if somebody was to contact, the isn’t MindMaze, would they contact Mind? Okay, so do you guys handle all of that process? Or do they have to do a lot of that work?
Angela Greene 17:23
Well, basically, they have to be under the care of a therapist. So what the work that is responsible on the patient side, is to have a consultation with their physician, and request a physical therapy or occupational therapy order for outpatient services if they’ve been discharged if they’re out of the system. Otherwise, if they’re already under treatment, there’s nothing special, no special order that has to be written for this, they just have to be under the care and agreement of a clinician who’s agreeing to oversee their care.
Educating clinicians on how to use MindMotion GO

Bill Gasiamis 17:52
And that clinician, occupational therapist, or physical therapist isn’t necessarily somebody who’s set up and previously used MindMaze or knows about MindMaze, they can just be somebody who is prepared to be the middle person between you and the patient, is that how it works? Do they also support them in that rehabilitation process?
Angela Greene 18:16
If they were going to partner with us and have the devices deployed? My role as a therapy Integration Manager is just that train the clinicians on how to use it. Because of all of my therapy integration managers, I’m the lead one, we have several spread among the United States and around the world. But all of us are clinical subject matter experts in neuro rehab.
Angela Greene 18:38
So we could really speak directly to the clinician and help educate them on how to optimize the usage. And that’s so important because, without it, they may miss some of these opportunities, like some of the games might be hand and sustained attention to the task at the same time where you could do a balanced training.
Angela Greene 18:56
Well, it looks like a hand or arm program, you could be doing dual-task training, which is a higher level of education and experience, where you could put someone on a foam pad for a big balance challenge while they’re focusing and doing multiple things at once. So you’re really stimulating the brain.
Intro 19:13
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. 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.
Intro 19:34
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 it’s called seven questions to ask your doctor about your stroke.
Intro 19:56
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.
Angela Greene 20:15
For recovery.
Bill Gasiamis 20:17
Okay, that sounds good. So by the way, I just want to make it clear, this is not an advertisement, for MindMaze or for this product, my job, my job is to bring awareness to people to have solutions that help them because this particular client of mine, they don’t have access, they have all the limitations you can possibly imagine, to accessing good solutions.
Bill Gasiamis 20:39
And the gentleman according to everybody has hit the plateau, we’ll talk about that in a second. And he’s in a remote location. And they’re doing their best to access services, and it takes a long time to get to services. And there’s a whole bunch of challenges behind it, right? So my job is to really kind of bring awareness to solutions that exist, that people don’t know about.
Bill Gasiamis 21:07
And for whatever reason, have not, maybe they’re fairly new. And they haven’t really made it out into the mainstream yet. And not everybody knows about it. And I like the idea that in the middle of this process you know, you guys require or encourage the support of an occupational or physical therapist in some way, shape, or form.
Bill Gasiamis 21:31
Because, again, outsourcing, I’ve heard of a lot of products that are similar in nature to what you’re describing, perhaps they’re different. And they’ve outsourced the product to the individual, it gets sent to the individual at their home, and then they are responsible for taking on all of the duties associated with doing the training, you know, finding the time allocating the time, etc, and then managing all the rest of the process.
Bill Gasiamis 21:58
So I like this idea better. So let’s talk a little bit about people who reached that plateau. So typically, my frustration with stroke rehabilitation is if you’re a certain age or above, and you reach what their medical industry calls the plateau, you’re essentially sent home and you’re expected to fend for yourself, which I think is so strange and bizarre and wrong. Because when somebody has hit the “plateau” that’s when the work needs to start.
Bill Gasiamis 22:39
I feel that that’s when the work needs to start. So the brain has done all the work to get them to the plateau. So far, you know, we’ve had that three to six months of the penumbra coming back online and things healing, and the occupational and physical therapists, not personally so that please, I don’t want anyone to take this personally, that I’m having a go with them. They get all the credit for moving that person through the initial recovery and the gains that they’ve created.
Bill Gasiamis 23:14
And then when it gets too hard, everyone says, It’s too hard. You’re on your own, why don’t you go home, and we’ll let the caregiver be the person who’s totally responsible for supporting you and helping you and basically go as you said earlier goes sit on the couch. And those people are the least likely to be able to support stroke survivors in overcoming that.
Bill Gasiamis 23:37
Because they have no background in rehabilitation, they have no background in stroke, they have no background in anything. They’re just a regular person going about their daily life. And they’ve been stuck with being the caregiver for somebody who has had a stroke, and they have no support.
When does MindMotion GO become necessary?
Bill Gasiamis 23:54
So tell me a little bit about when does your product come into the picture? Does it come? At the beginning of the process of rehabilitation? Does it come after the plateau? Does it come many years later, when is the ideal time to implement something like this?
Angela Greene 24:13
Well, according to the neuroscience test that we have, everything we have is evidence-based. And our company is a group of neuroscientists and neurologists. And really focusing on the optimum period like day one, once you’re medically stable. After a stroke, that’s when your optimum Neuroplasticity occurs up until about 30 days right after the initial stroke.
Angela Greene 24:37
That’s really your biggest opportunity to get make as many gains as you can. Okay, so that’s when you need to be moving 1000s of times a day and not sitting in a wheelchair somewhere. And that continues to improve ours till about 90 days. So we have that like I said the mind pod solution that’s usually in the clinic itself, and then sending the unit home with somebody for 12-15 weeks.
Angela Greene 25:01
That being said, we’re currently doing some research where we run labs with David Petrino at Mount Sinai in New York. And his study is chronic stroke, six months post or greater after a stroke. And his program is pretty much almost all asynchronous. So you go in for an evaluation and the unit gets set home and you get set up and you have the unit to work with.
Angela Greene 25:23
And I can tell you have a clinician new and not as skilled and now has much more skill many years on because I hate looking at a patient and not being able to help them, I feel it’s my responsibility to learn what to do to help that person, I don’t just give up on somebody. And when you described your 80-year-old friend who might have a sunblock shoulder and some weakness in there, I would point to the therapist and say you don’t have enough skills to really support that person.
Bill Gasiamis 25:54
I would agree.
Angela Greene 25:56
And so my lack of skills should not dictate your plateau. That really upsets me. And I think we have a responsibility to our clients, we can’t fix everything. I mean, we can’t know. But there are some things that I would do for that client in particular, that would help them start getting activation of his rotator cuff muscles and start supporting it. I mean, there are so many different things that can be done.
Angela Greene 26:18
Rather than just go stick a fork and you’re done. Now, insurance is notorious because we have to continually show progress for most disease processes. I know somebody with Parkinson’s went after Medicare and said I have a right to sustain the level that I’m at. And I mean, it may be a maintenance-type program, as opposed to a rehabilitation-type program.
Angela Greene 26:41
And, you have to really challenge the system, you have to be an advocate for your own care. But I can tell you, if I suffered a stroke, one, I’d obviously be very frustrated. I’m not a patient person I’m from New York City originally. But I would tell you, I would do everything in my ability to recover as much as I can. And I would not wait for them to tell me what to do. That’s just my nature. You know.
Bill Gasiamis 27:08
It’s interesting. You’re, you made an interesting comment about insurance needing to seek continuous gains. Gains after recovery are not a capitalist economy. It’s not about you know, the let’s let’s do another 10%. This year, next year, and forever after that the gains in stroke recovery mean much more than that.
Bill Gasiamis 27:32
And keeping and maintaining movement, once it’s achieved, or once it’s reinstated, or once it’s recovered, is really, really important. And absolutely, there needs to be more to help people maintain their health rather than their health going backward.
Bill Gasiamis 27:50
Because then if there is an insurance policy that they would have to claim back on that, wouldn’t they, if they ended up becoming worse and worse and more and more unwell? But still, a situation where insurance has to pay out and support them.
Angela Greene 28:05
If you have one in four people having a second stroke, what can we do to prevent that if we could give them cardiovascular activities and keep them active and empower them? With the empowerment because I’m an occupational therapist, I’m very much aware of what happens when people lose the ability to take care of themselves, they get very depressed, very, very depressed, very frustrated myself, I was in a terrible accident when I was 23.
I was superhuman climbing, doing all kinds of stuff. And then I was flat on my back, I lost my complete identity of who I was. And I got very depressed. And it’s nothing like having a stroke to that degree. And I don’t mean to insult anybody. But I do understand the process of you having to figure out who am I now.
And what defines, you know, how do I define myself? Because I go up to people, I said, What do you do, they tell me what they get paid to do. They don’t tell me I got up this morning, I brush my teeth and I wipe my own butt and I dressed myself and I made breakfast or paid my bills or drove a car.
They don’t talk about all the things that help define who we are that occupy our time. And I think every single one of those helped us to become you know, the whole person. And we have to look at the person holistically, not just okay, you didn’t make that little tiny progress. I want to see people sustain the gains. And a really good thing I posted this on LinkedIn. And they did research in inpatient rehab.
And they said people who get discharged, make more progress with PT while they’re in inpatient rehab, and then they get home and they go backward. Yes. And with OT, they make slower progress. But when they get home, they actually continue to progress. So the question is, why is that? Is it because people were horribly fearful of falling when they get home and they don’t have that level of support and encouragement? That’s a possibility.
Right? Is it that OTS is awesome and we just you know, know what we’re doing, and no kidding? No, I just think because we’re very functional. Yeah, we’re very functional. So you have to understand, you know, the nuances of that. But I would never ever satisfy for less than what I was capable of doing. And I don’t expect my patients to compromise either.
Bill Gasiamis 30:14
Yeah, look, I think all of what you’re saying is relevant. And identity is something that’s important to try and help a person maintain rehabilitation from the supposed plateau and beyond the plateau will help with all sorts of things. And it decreases the demand on the medical system if you get people better, and you give them the opportunity to get better for longer.
Bill Gasiamis 30:38
Because if they’re better longer, and you don’t send them home, well, then you’re also not impacting negatively on the caregiver. And there’s a possibility that a caregiver, another possibility, I think it’s a proven statistic that caregivers usually pass away or become ill as well. And as a result of that, then you go to people that are incapable of supporting themselves because of the stressful situation that the caregiver finds themselves in.
Bill Gasiamis 31:06
Or then they neglect their own health and well-being to help the other person and then they end up in a similar situation or worse.
Bill Gasiamis 31:16
So it’s intuitive, I would say it would be the intuition would say that you have to make and support people to be better for longer so that you’ve got fewer people coming back into the system that needs support. The exact opposite is happening.
Angela Greene 31:40
Common sense, right? And then just look at the evidence, why are we doing rehab at all? Yeah, if we’re not following what the evidence, the evidence is that high dose, so it’s rare if you’re going to get somebody an outpatient has to be seen five days a week, it’s almost unheard of unless they’re private pay or something.
How long does the MindMotion GO therapy take?

Bill Gasiamis 31:57
The particular gentleman that I mentioned, a couple of times did get initially a full-on amount of rehabilitation that went that long. And then that went for five days a week, etc. And then it stopped. And he has been curious about how to reactivate something along those lines because he’s very keen to get on his feet again, become active, and participate in his household and his life again.
Bill Gasiamis 32:29
But he hasn’t been able to find a solution to reintroduce the level of activity back into his life, because he doesn’t have somebody supporting him through that. If somebody does go down this path, and get a MindMaze-type device, how much? How much time does the occupational therapist that sort of sits in between you and the patient how much time do they have to put into that particular therapy?
Angela Greene 33:07
To run that kind of program? So they have to do an initial assessment, because of course, you want to baseline that and figure out, you know, are we going to progress? You know, where do we start, then it probably takes once they’re trained in how to use the unit, which I usually spend a good amount of time helping people understand all the benefits of it, and that it is included in there.
Angela Greene 33:31
And implemented in their approach their therapeutic approach to create a great home exercise program. So once they have that setup, it could take 15 minutes total, to set that up 15 to 20 minutes in the clinic, and then the patient goes home with the device. And that’s pretty much the remote monitoring of the patient like through telehealth.
Angela Greene 33:54
Or they could come in once a week to the clinic or once every two weeks and have an upgrade and 15 minutes to the time that they’re there. Maybe an hour could be spent addressing upgrading their exercise program, which is very typical, and therapy. We always like to look to okay, how you do with the home exercise like what’s progress. You let’s move it ahead, you know.
Angela Greene 34:15
So it’s not different from what we’re used to doing. It’s just a different way of delivering it. And the other thing I want to say is if you look at home health, they don’t come out a lot, right? If you don’t need medical monitoring, and you’re still homebound, this is a game changer. This is an industry disrupter because you could actually send somebody home with this device. And they could have five days a week in their homebound.
Bill Gasiamis 34:40
So in the case of this particular gentleman at home with his wife, what role would his wife play in this process?
Angela Greene 34:53
Is she a tech wizard?
Bill Gasiamis 34:55
She’s not a tech wizard but in actually going through the process together So getting him, supporting him and helping him get the exercises done, etc. So, is it necessary for our caregiver to be involved in that process as well? Is the better question, actually?
Angela Greene 35:16
I guess it depends, they have to be able to somebody’s using they have to be able to follow directions, like to step commands, and have some active range of motion, those are some of the precautions that we’ll look at over age 22. No history of seizure activity, because we certainly don’t want to make things worse, if it’s a standing activity, and they’re wobbly.
Angela Greene 35:35
And this is up to the clinical reasoning of the therapist providing the oversight and guidance of the program. They could do seated activities as well as standing. So we have flexibility in our programming, but basically, you turn it on, you’ll press play, and you go and there’s your program. It’s on TV.
Bill Gasiamis 35:55
Okay. It’s not a device that you wear on your head or anything like that.
Angela Greene 35:57
No, it’s not an immersive experience. And a lot of people don’t tolerate the goggles because they get really dizzy doing it. So that’s what I love about our solution is that you’re not immersed, you’re still looking around your room, and you feel very comfortable with it, I feel comfortable as a clinician sending it at home, I would not send somebody home with the goggles, because I’m pretty sure they’re gonna fall, I would fall and I don’t have a stroke.
Bill Gasiamis 36:21
Yeah, I see what you’re saying. Okay, so then, are there any wearable parts? How do you interact with the screen, when you’re sitting way over there, and the TV’s over there?
Angela Greene 36:33
So you need about six feet from the Kinect camera. And it’s a full body motion camera. So you don’t have to attach anything, it’ll start the game and you start playing the game, if it’s moving your arms, it’s moving one arm, if it’s driving, if it’s stepping on little monsters for reactive stepping, which is a great thing for, you know if you start to lose your balance, and you need to take a step quickly to save your balance.
Angela Greene 37:00
That’s what it’s about. You could do those activities, but basically, you just play. Because the therapist has already calibrated it to you and to your level and where you’re at, and adjusted the gameplay. That’s the clinical reasoning that it’s needed.
Bill Gasiamis 37:17
Okay, so that’s what I’m missing. So the setup is calibrated to the specific individual and their body, etc. And it knows, it recognizes them and knows when they’re moving their hand and their leg and all that type of thing.
Angela Greene 37:30
Yeah, it indicates like a little circle, like basically, you’ll turn green, that it’s on target, even if I’m a clinician standing with you. It won’t pick me up at all. And I’ll be like purple, there’ll be bringing, they’re the target. And the other thing to consider is while you may be able to complete one full range of motion, I might be able to come all the way up my arm 180 degrees one time.
Angela Greene 37:54
What do I look like after doing that? 60 times a minute. Am I doing it with all this body of English and compensation? Because we don’t want the compensation, we’re trying to train away the level of impairment. That’s what we’re really trying to do. So I may calibrate it a little less to give you the opportunity to move maybe half that distance, depending on what you tolerate, and what you look like when you’re playing. And then you’re successful. And you start building more strength and endurance.
Bill Gasiamis 38:21
Yeah, so you want isolation, you don’t want lazy movement.
Angela Greene 38:27
Well, we call it compensation because people will move any way they can to achieve the posture. So if I asked you to touch your head, you may do you know this whole thing or, or this, you know, the synergic patterns that people develop up like this to try to pick up and bring something to their mouth, we want to discourage that.
Angela Greene 38:47
And if you could train that away to begin with, then people tend to not go into those patterns, or stay in those patterns for as long. Because when I first started my career, there was no such thing as TPA. And if you survived a stroke, most of the time, that was pretty catastrophic. Yes. And then once TPA was introduced, I saw a much lesser level of impairment than I did before. But you still have impairment going on.
Bill Gasiamis 39:15
Yes. TPA has been a game-changer. There’s no doubt about it, there are a lot of people who wouldn’t be around if it wasn’t for TPA. And what’s interesting about TPA is sometimes I speak to the stroke survivors who have had TPA administered and then they kind of take the stroke or that wasn’t a big deal. I was home two days later.
Bill Gasiamis 39:42
They have fatigue and other things that don’t realize the seriousness of what a stroke means and what that could have been like. And they kind of take it as a knee injury. Oh, well, I was injured for a couple of days. I was out of action. And then I got better. I was at home and then I have this, they misunderstand the potential long-term effects of even that, “small” or mini or minor stroke.
Angela Greene 40:13
Because there’s a chance you’ll have another. And I tried to explain to people that once you have, it is so serious to have it addressed as quickly, like any of the signs we call fast, or you know, the facial weakness or anything like that, it’s so important that you get to the hospital because that TPA periods, only three, three hours, yes, from the time you walk into a hospital, so you don’t go to sleep and take a nap.
Angela Greene 40:37
If you don’t feel good lying down, you may not wake up. And then if you could get there within the three hours, and they can administer it, that’s great if you’re a candidate for it. The other problem is that once you start, you know, the blockage happens that tissue dies, right in the immediate vicinity. But as that tissue dies, that releases chemicals that destroy further tissue. So I always call it like the avalanche of disaster. Why do you want to go there? If you can prevent it? Do you know?
Importance of maintaining rehabilitation beyond the plateau
Bill Gasiamis 41:03
Yeah, I agree. You know, when we were talking a little earlier about people who have had a stroke, and they’ve, they’re in their plateau, and or beyond the plateau? What kind of results? Have you seen people like that? Can you give me some information about the type of results? You’ve seen with people who have taken up your program, beyond the plateau?
Angela Greene 41:31
I think when you get more body awareness, you get a better quality of motion and movement. Now, neuroscientists will say that Neuroplasticity pretty much ends very quickly. Like I said that 90 days, anecdotally, in my career, I’ve seen people, many years post-stroke, or post-brain injury, and still make gains.
Angela Greene 41:53
If they have a painful arm, and they couldn’t really function initially well and participate well in therapy, just different approaches to us have helped them. But with our products, with the like my motion going home, one, I think it gives them more body awareness. I think it gives them more cardiovascular activity.
Angela Greene 42:15
I think it empowers people to be successful because a lot of people avoid exercise because they feel like they can’t be successful. And I think the quality of the motion overall, when you have that increase, and the repetition and the endurance builds and the strength builds, then the movement quality improves.
Angela Greene 42:32
So you get a better quality of motion. Everything from hand function, you know, if you could just use your index finger, your middle finger, and your thumb, those are your moneymakers, you know, those, the little finger and the ring finger are more stabilizers and assist assistant holding.
Angela Greene 42:50
But this is your dexterity, you know, if you can use those and recover function there, you’ve got a great portion and a great portion of hand control and ability to participate in your activities of daily living.
Angela Greene 43:03
So if you could do that, if you could get a little bit more in the shoulder a little bit more in the elbow, I mean, it means that all the difference in the world, you know, or be able to extend your arm out to the side. Because now you can pull your pants up or wipe yourself, you know, it’s simple dignity issues, you know.
Bill Gasiamis 43:19
Yeah. And you’ve seen that there has been the restoration of additional movement, and people have gained movement and use of limbs and fingers, etc, way beyond the plateau.
Angela Greene 43:38
I like to think about it in a way that sometimes the right approach has to happen at the right time. And maybe they didn’t have the opportunity to have the right approach previously. So I think you’re still gonna see gains, no matter what you do if you have a good qualified person working with you. But having the opportunity to do that high dose, high intensity definitely increases your strength, definitely increases your endurance definitely increases your cardiovascular. Just because you’re up and moving not sitting on a couch.
Bill Gasiamis 44:07
Yeah, some people will say I’ve got fatigued, debilitating fatigue after my stroke, etc. Does this help with getting people to move beyond that fatigue as well?
Angela Greene 44:18
It does because you can pause the games at any time. I mean, and they could be, you know, titrated for you to play maybe, you know, 30 seconds and you take a break and then you go at it again. I mean, it’s very flexible. It’s very approachable. You just need a skilled clinician to help deliver it for you.
Bill Gasiamis 44:37
Okay, is this something that people can access in a nursing home scenario? So there’s another gentleman who follows the podcast, and he’s I’m going to call him a fan. If he probably listened to this episode. I’m gonna call him a fan of mine, and he might get kicked out of that. And he had a stroke and then he ended up in locked-in syndrome.
Bill Gasiamis 45:00
And it took him a while to get out of locked-in syndrome. He was actually on the podcast. And when he joined me on the podcast quite a while ago now, he spoke with a machine we pre-recorded. I sent him the questions, and he answered them on his machine. And since then he’s told me that his things have improved somewhat, and he’s standing up more often.
Bill Gasiamis 45:24
And he’s using his arms further and better. But the majority of his day, I don’t imagine is high-intensity, rehabilitation. Is that something that can be supported and installed or delivered into a nursing home room? For example, would there be occupational therapists in that environment that would be able to participate in this?
Angela Greene 45:51
Absolutely. We have, like this IZAR the pressure-sensitive device I was talking about, you could use it laying down you can use it seated. It’s great for hand activation. And like I said, finger individuation attention to the task. And I’ve worked with several folks that I’ve had locked in. And I’ve helped set up those devices like communication devices for them as well.
Angela Greene 46:13
And this is something that they could control and use while they’re in bed, they just have to be able to have their body uncovered. So you can see your limbs, like your arm or your legs, so you can’t have to be covered up with a sheet. If you’re using the whole body motion camera, or the hand camera, it just has to be unobstructed, because it’ll pick up on the body motion itself. The eyes are Bluetooth enabled and have an accelerometer in them. It’s pretty cool.
Angela Greene 46:39
So it’s not camera dependent. So it’s a little bit more flexible for some folks might be a lower level. And you could do patterns of motion and all of that with a and have some fun. I’ve had folks use it on the edge of the bed when they’re recovering initially, just for trunk balance and sitting balance.
Angela Greene 46:58
I mean, it’s a great activation for that you could even do an embed side-to-side and play some of the games. That way, you just have to have a TV high enough that you can see what’s happening. And the cameras are set up high enough. Okay, so just like put an audit cart with an HDMI TV. And you could just wheel it right into a patient’s room.
Bill Gasiamis 47:16
Okay. Fantastic. This is something that, you know, I’m trying to I’m asking you these questions. So we can give kind of people visualizing and sort of seeing how this thing would be used or, or how it’d be installed or how it would be interacted with. And that’s kind of the hardest thing about an interview is how do I get that message across?
Angela Greene 47:37
To visualize it? Yeah.
Bill Gasiamis 47:39
So we’re going to, eventually, we’re going to send people to the website and give them some places where they can go and see it in action, I suppose there are some videos and all that type of thing. That’d be helpful because that’ll take the responsibility off me
Angela Greene 47:57
Think of a TV. Right? And the question is in a clinic, do you want to stay in one place mounted to the wall? Or do you want an undercard where you can take it to the parallel bars and use it with the patient?
Angela Greene 48:09
Okay, so think of a TV and it’s a little computer unit, it’s about the size of a DVD player that’s with it. The Xbox Kinect camera most people are familiar with, it’s that little bar kind of setup. But if you’re laying in bed, you have to have it high enough that you can see the television and the camera, so that it’s a pretty compact system. It’s actually pretty mobile.
Bill Gasiamis 48:31
Okay. And then it can actually be taken into an occupational therapy room where there are parallel bars and all the different things in there. So we came and interactions can happen in therapy at the same time.
Angela Greene 48:48
It can be done like that at Johns Hopkins, they have an upper extremity lab. And they have it set up there for patients to use. They have the latest and greatest like Super Robot, tech. exoskeleton tech and all this and a lot of it is too cumbersome to put on.
Angela Greene 49:04
And what they find is their patients really love our product because they could go in there with maybe a tech get initially set up and they could play. Yeah, it’s very simple to use.
Bill Gasiamis 49:13
Yeah. Okay. Well, that sounds like it’s as accessible as the old-fashioned tennis Nintendo Wii that I played when I was in rehabilitation in 2014. And all I did was stand in front of the TV screen that they had wheeled in front of me.
A quick walkthrough of MindMotion GO
Bill Gasiamis 49:29
And because I had balanced I was able to regain my balance. Then I basically just strapped the controller to my left hand and swung the virtual racquet and lost every tennis game that I played.
Angela Greene 49:44
Well, you don’t even need to hold on to a controller. That’s the cool thing. I can show you examples of some of the games if you have a few minutes. So this is my screen. And this is a companion which is the dashboard that allows me to record These are all fake patients.
Angela Greene 50:02
So this allows me to add patients here. Okay? And username, I can put whatever is in there. But then over here, it says the person is going to do it unsupervised they need an email and password to be able to log in at home, okay?
Angela Greene 50:19
And then when I come down here, what’s their therapeutic goal, I want to be able to drink a glass of water, I want to be able to walk. And then once I complete that, I hit add.
Angela Greene 50:27
Now this comes up, we have a companion app, it is a daily reminder phone app that is kind of behavioral, cognitive behavioral, that reminds people why are they doing what they’re doing, and when they have scheduled appointments, and things like that, okay.
Angela Greene 50:42
So I’m not going to do that right. Now. Let me just go to a fake patient here. So as a clinician, this is where I set your schedule. So you could see on Tuesday, you have an upper limb program, and an upper one is easy, maybe on Friday, you have some free play that you could do.
Angela Greene 51:00
And these are examples of the programming here, I could set the levels from one to 10, I could auto level it, or so it auto levels up. If you’re successful after a couple of games, you don’t have to wait for me to change it as your therapist, or it could drop you if you’re not successful. Okay.
Angela Greene 51:17
And this is an example of an airplane, an airplane, you’re using your trunk seated or standing to steer the plane. And this is actually a higher level. So the lower level is visually not as complex and it moves a lot slower. And it gives a lot more cueing.
Angela Greene 51:37
As you progress through the games, it gives you consequences and obstacles and challenges and moves faster and things like that. So that’s one example of the games. So this could be used as the edge of the bed. And it tracks compensation.
Angela Greene 51:51
So if you try using your legs to get over there or something like that, it’ll track that some of the others I have this are using your arm to move across the lanes of traffic. Steering wheel, so this is like your driving like a driving game, which is really helpful because I used to do driver readiness training for people with brain injury and stroke recovery.
Angela Greene 52:15
Right, kinda scary process. Sometimes, this uses your whole trunk, to turn the car. Okay. I really like this one, I’m gonna expand this one. So this is the trunk and bilateral hands. And you could actually crossover do hand over hand and all that. And it starts off very simple.
Angela Greene 52:38
This is actually a higher level, like Don’t Touch the Blackwidow. Right? It could be seated or standing. And you notice some of the rocks are grayed out. Because this is a higher level, basically, you have your choice on which path of the rocks you’re going to follow the blue or the green. And they started off on green, so you can only touch green now.
Angela Greene 52:56
Okay, so there’s some problem-solving, there’s cognitive demands, and I really like the elements of dual-task training. So if somebody’s standing, I might put them on a foam pad while they’re doing this and compromise their balance, just to really make them super strong, you know?
Angela Greene 53:13
Yeah. This is an example across the road with wrist flexion extension and a minute’s time, you’ll do like 60 reps. The goal is not to get run over.
Bill Gasiamis 53:30
Okay, so using that wrist movement to
Angela Greene 53:35
Advanced the bunny. Yeah.
Bill Gasiamis 53:37
Right, I see.
Angela Greene 53:38
Now this is a forward-backward step. But the next one I like even better. It’s called Free Steps. And the free step is you’re moving in multiple directions. So you could use either leg to go forward, take a step forward, but then you notice the step into the side and the other side and then go forward.
Angela Greene 53:57
And you can also step backward to get off the train tracks or whatever, so you don’t get run over. So the first level starts with like one single little country lane and then it gets crazy like somewhere in some busy city, right? Okay. This is a flying car. Look sorry.
Angela Greene 54:18
So again a higher level, right? If you’re avoiding the obstacles of the cones, the cones will move at a higher level. Now we also have game eyes are significant to get to that. Let me see what else I have here. You could also do it with your wrist. This is what the eyes are.
Angela Greene 54:41
So you squeeze it to control the pressure and the release that it’s calibrated. Let’s say you don’t have a lot of grips, or you had a spinal cord injury or something. You just don’t have a lot of grip or release. You could customize it to that person what they have available.
Angela Greene 54:57
Okay, so you can still play the game. You So it’s totally customizable. And I did this with a gal who had a catastrophic brain injury, very severely attack sick.
Angela Greene 55:09
So her presentation looks something like this the whole time, and unable to focus and sustained visual attention, which if you can’t sustain visual attention, you’re gonna have a hard time recovering anything. When by I introduced her, I had the therapist stand next to the screen.
Angela Greene 55:24
And she played this game for three minutes and blew her therapist away because they didn’t think she could do it. So it really opened their eyes to how she was processing information and all.
Bill Gasiamis 55:33
Yeah, that’s fascinating, Angela. So inch.
Angela Greene 55:38
And then this is another good one. So this is a tilt table. This is a higher level, of course, the very first level is just a frame fence with the ball rolling around trying to get the gold nuggets, this one has things that try to take you out and drown you, as you know, complex.
Angela Greene 55:55
So it’s side bending, as well as extension flexion. So really increasing your body awareness. And as somebody who’s certified in vestibular rehab, then I upped the price of poker by challenging your balance. I’ve had patients on parallel bars on a rocker board with us in front of them playing it, which is the very high level you like your super surfer dude.
Bill Gasiamis 56:19
Yeah. I love her. Even though this seems like palm cycling, it’s the higher-level more advanced version. I love how it’s very gentle. And that you’re looking at the animation and how much the person has to move.
Bill Gasiamis 56:35
They’re not really moving dramatically, and you know, frantically or anything like that. It’s a very low, gentle, kind of.
Angela Greene 56:44
And I think that’s a different side to the way you write we just think your normal moving normally. Now this is a higher level, this is one of my favorite games, especially bilateral play. So the hand has to hover over the target. So you see like the star, the right hand.
Angela Greene 57:02
And then if it has spikes, you don’t touch it. And now it’s going to be the triangle and that little one down there.
Angela Greene 57:10
But when I calibrate this, if somebody doesn’t have a great range of motion, let’s say on the right side, and they can only play up to where like the star is, or the diamond is they could still have a full range of motion with one hand and play the game within their available range.
Angela Greene 57:25
This is what I talked about calibration. Yes. Because I don’t want them to try to come up here 6070 times a minute for you know, five minutes if they’re going to start doing all kinds of body English and compensate, and I want to get rid of the impairment.
Angela Greene 57:38
So I might keep them down at a lower level just to keep them a better movement quality, and then slowly increase that movement quality.
Where would people go to find more information about MindMotion GO and MindMaze?
Bill Gasiamis 57:46
Yeah, that looks amazing. Excellent. I think that’s fantastic. I think it’s a really great thing that these things exist. I’m glad that somebody from my maze reached out so that we can get on the podcast.
Bill Gasiamis 57:58
So if you can give me a little bit of information now so that we can send people to the appropriate website, Where would people go to find out a little bit more information? And who would they contact if there was an inquiry that they wanted to make? Well,
Angela Greene 58:14
you can contact me in the United States, we are international, on several continents. The lead for the United States so you can reach out to me my email address is Angela a n g e la dot green light, the color gr e n e at mindmaze.com. The website is mindmaze.com. And if you reach out there, what happens is they’ll find the person who handles that country to come back to you.
Bill Gasiamis 58:45
How many countries are around the world?
Angela Greene 58:47
Oh, We’ll I know we’re in most of Europe. I know we’re in India, we’re in Saudi Arabia. I’m trying to think I think there was some presence in South America, I think in Australia as well.
Bill Gasiamis 59:03
Okay, well, that’s great. Sounds like there’s a lot of possibility for people listening from all over the world to access the solution. This podcast goes to about 40 or 50 countries. So I’d say we probably going to meet people from all over the world there that might be able to get curious about that.
Bill Gasiamis 59:26
And as far as all the rest of the contact data are we’ll have that information in the show notes so people can find it and connect these yet.
Bill Gasiamis 59:35
They can also reach out to me via recoveryafterstroke/contact if, for example, they have a question or they want an introduction or anything like that. But in the meantime, thank you so much for joining me on the podcast. I really appreciate it.
Angela Greene 59:50
Absolutely. My pleasure. I love talking about what I do. I have a real passion for what I do, and an advocate for my clients and if we can change and shape the outcomes, I think and have that opportunity to do it. I think we should do it so it’s a great opportunity.
Intro 1:00:07
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals the opinions and treatment protocols discussed during any podcast, or the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:00:24
All content on this website at any linked blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:00:40
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 1:01:01
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Intro 1:01:15
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Intro 1:01:38
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The post MindMotion Neurorehabilitation For Improved Limb Movement | Angela Greene appeared first on Recovery After Stroke.
1 hr 2 min
June 05, 2023Ischaemic Stroke Recovery – Sherif Aboutouk
After his second covid 19 vaccination Sherif Aboutouk experienced an Ischaemic Stroke that amongst other things has caused vision problems.
Highlights:
00:44 Introduction
02:55 The first signs of ischaemic stroke
08:45 COVID vaccine might have caused the ischaemic stroke
17:18 No one talks about covid-19 anymore
20:54 About stroke recovery being google proof
23:06 Why stroke podcasts are so important
34:03 Stroke is the best thing that ever happened
39:49 Things that matter after the stroke
51:27 Learning how to use the heart after the stroke
57:37 Emotional recovery is the most important recovery
1:05:57 The Power of Apology
1:14:27 Experiencing the deficits differently
1:22:22 The invisible disability
1:31:52 The lessons Sherif Aboutouk learned from stroke
Ischaemic Stroke in Young Adults: Recognizing the Signs and Seeking Prompt Medical Attention
A stroke is a medical emergency that can happen to anyone, at any age. However, when we think of stroke, we often associate it with older adults. But did you know that stroke can also affect young adults? In fact, ischaemic stroke, a type of stroke caused by a blood clot in the brain, is becoming increasingly common in younger people.
This is a worrying trend, as many young adults may not recognize the signs of stroke or seek medical attention promptly, leading to long-term disability or even death. In this article, we will explore the signs and symptoms of ischaemic stroke in young adults and the importance of seeking prompt medical attention.
We will also discuss the risk factors and preventative measures that can help reduce the incidence of stroke in younger individuals. So, if you or someone you know is a young adult, it is crucial to stay informed and aware of the signs of stroke to ensure early detection and intervention.
What is an ischaemic stroke?
An ischaemic stroke occurs when a blood clot blocks a blood vessel in the brain, reducing blood flow and oxygen supply to the brain. This can result in brain damage, disability, or even death. ischaemic stroke is the most common type of stroke, accounting for approximately 87% of all stroke cases, according to the American Stroke Association. As we get older, our risk of having a stroke increases. However, younger adults can also have a stroke, and ischaemic stroke is becoming more prevalent in this group.
Prevalence of ischaemic strokes in young adults
Although stroke is more common in older adults, the incidence of ischaemic stroke in young adults is on the rise. A study published in JAMA Neurology in 2019 found that the incidence of stroke in young adults increased from 12.9% to 18.6% between 2003 and 2015. Ischaemic stroke accounted for 85% of all strokes in this age group. The reasons for the increase in stroke incidence in young adults are not entirely clear. However, some experts suggest that lifestyle factors, such as poor diet, lack of exercise, and high-stress levels, may play a role.
Risk factors for ischaemic strokes in young adults
Several risk factors can increase the likelihood of having an ischaemic stroke in young adults. These include:
High blood pressure
High blood pressure, or hypertension, is a significant risk factor for stroke. It can damage the blood vessels in the brain, making them more likely to rupture or form clots.
Smoking
Smoking increases the risk of stroke by damaging blood vessels and promoting the formation of blood clots.
Diabetes
Diabetes can contribute to the development of atherosclerosis, a condition in which plaques build up in the arteries, making them more prone to clots.
Obesity
Obesity increases the risk of stroke by promoting the development of other risk factors, such as high blood pressure, diabetes, and high cholesterol.
Family History
Having a family history of stroke or certain genetic conditions, such as sickle cell disease, can increase the risk of stroke.
Other risk factors for stroke include high cholesterol, atrial fibrillation (an irregular heartbeat), and drug abuse.
Signs and symptoms of an ischaemic stroke
Recognizing the signs and symptoms of an ischaemic stroke is crucial for prompt medical attention. The faster a stroke is detected and treated, the better the chances of recovery. The most common signs and symptoms of an ischaemic stroke include:
Sudden weakness or numbness on one side of the body. This can affect the face, arm, or leg and may cause difficulty speaking or understanding speech.
Sudden vision changes. This can include blurred vision, double vision, or loss of vision in one or both eyes.
Sudden severe headache. This can be accompanied by nausea, vomiting, or dizziness.
Difficulty walking or loss of balance. This can cause a sudden fall or difficulty standing up.
Confusion or difficulty understanding. This can cause sudden memory loss or difficulty speaking.
It is essential to note that not all symptoms occur in every case of stroke. If you or someone you know experiences any of these symptoms, seek medical attention immediately.
Importance of seeking prompt medical attention
Seeking prompt medical attention is crucial for the best possible outcome after an ischaemic stroke. Time is of the essence when it comes to stroke treatment. The longer the brain goes without oxygen, the greater the risk of permanent brain damage. Treatment for an ischaemic stroke may include medication to dissolve the clot, surgery to remove the clot, or rehabilitation to help regain lost function. However, these treatments are most effective when administered within the first few hours after the onset of symptoms. Delaying medical attention can result in long-term disability or even death.
Diagnosis and treatment of ischaemic strokes
Diagnosis of an ischaemic stroke typically involves a physical exam, imaging tests, and blood tests. Imaging tests, such as a CT scan or MRI, can help determine the location and severity of the stroke. Blood tests can help identify risk factors for stroke, such as high cholesterol or diabetes.
Treatment for ischaemic stroke may involve medication, surgery, or rehabilitation, depending on the severity and location of the stroke. Medications, such as tissue plasminogen activator (tPA), can dissolve blood clots and improve blood flow to the brain. Surgery, such as a thrombectomy, can remove the clot from the blood vessel. Rehabilitation can help regain lost function and improve quality of life after a stroke.
Rehabilitation and recovery after an ischaemic stroke
Rehabilitation and recovery after an ischaemic stroke can be a long and challenging process. The goal of rehabilitation is to help individuals regain lost function and improve their quality of life. Rehabilitation may involve physical therapy, occupational therapy, speech therapy, or all three. Physical therapy can help improve strength, balance, and coordination. Occupational therapy can help individuals regain the ability to perform daily tasks, such as dressing or eating. Speech therapy can help improve communication skills.
Recovery after an ischaemic stroke can take weeks, months, or even years, depending on the severity of the stroke and the individual’s overall health. Some individuals may experience long-term disability or cognitive impairments after a stroke. However, with proper medical attention and rehabilitation, many individuals can regain lost function and live full and productive lives.
Prevention of future strokes
Preventing future strokes is essential for individuals who have had an ischaemic stroke. Prevention may involve lifestyle changes, such as quitting smoking, losing weight, or exercising regularly. Medications, such as anticoagulants or antiplatelet drugs, may also be prescribed to reduce the risk of future strokes. Managing underlying medical conditions, such as high blood pressure or diabetes, is also crucial for stroke prevention.
Conclusion
Ischaemic stroke is a medical emergency that can happen to anyone, regardless of age. However, the incidence of stroke in young adults is on the rise, and many individuals may not recognize the signs or seek medical attention promptly. Recognizing the signs and symptoms of an ischaemic stroke and seeking prompt medical attention is crucial for the best possible outcome.
Risk factors for stroke can be managed through lifestyle changes and proper medical attention. Rehabilitation and recovery after a stroke can be challenging but can lead to significant improvements in function and quality of life. Preventing future strokes is crucial for individuals who have had an ischaemic stroke. By staying informed and aware of stroke risks and signs, individuals can take steps to reduce their risk of stroke and improve their overall health and well-being.
Transcript:
Sherif Aboutouk 0:00
I started listening to you three months ago. And I can tell you hand on heart. I only listen now to your podcast and I’ve probably gone through 30 episodes or so. And the amount of knowledge and hope that I have gained from that is honestly a hundred times more than the experience I’ll have in the hospital.
Intro 0:31
This is the Recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Sherif Aboutouk
Bill Gasiamis 0:44
Hello, and welcome to episode 253 of the Recovery after Stroke podcast. My guest experienced an ischemic stroke age just 34 Not long after being injected with a second COVID-19 vaccination at the height of the COVID-19 pandemic. Sherif Aboutouk, welcome to the podcast.
Sherif Aboutouk 1:07
Thank you very much.
Bill Gasiamis 1:10
It’s my pleasure, man. Thank you for being here so late in the evening over there in the United Kingdom. Tell me a little bit about what happened to you.
Sherif Aboutouk 1:21
So it started with my second dose of the vaccine. So I had my second dose of my Pfizer vaccine, the end of July 2021. And I experienced afterward, four episodes in four different weeks of numbness in different parts of my body.
Sherif Aboutouk 1:49
The latest one I had was by mid-August, I remember going it was a Friday. I’ll never forget that day and I was speaking to a colleague, I needed to do something and I said look, I’ve had these episodes of numbness and I really need to go to emergency.
Sherif Aboutouk 2:08
And I went to the bathroom. And as I was there all of a sudden I lost power and control in my left leg. And I had to sit on the floor and I was just a little bit scared and didn’t know what to do.
Sherif Aboutouk 2:27
I live by myself and I just thought wow, by then it was fine. I live in the central part of London very close to St. Mary’s Hospital in Paddington. It’s literally a five-minute walk. And I went there, I remember chatting to the doctor I used to do a lot of triathlons and cycling.
The first signs of ischaemic stroke
Sherif Aboutouk 2:55
I remember her saying “Oh me too la la la” and we had this conversation had very high blood pressure. I told her about my three episodes. And one of them I have blurry vision.
Sherif Aboutouk 3:09
And I said look, I completely lost power in this leg and she’s like, Oh, no, you’re too young, it’s okay. I learned later that I have a TIA I have 2 TIAs before my stroke. And normally, they could have just scanned my head and found it would have been an aspirin should have been okay, but then was left to go home.
Sherif Aboutouk 3:38
And then I flew out to Majorca on the 25th and 26th of August to meet my mom there because it was locked down, my mom lives in Egypt. And Egypt was on the Red List to come to England.
Sherif Aboutouk 3:58
So she was visiting her sister there. So I thought right, I’m gonna go there and spend a couple of days of cycling. And I just didn’t think too much of it at all. I just thought right, you know, it’s okay and then when I come back, I’m going to see a neurologist.
Sherif Aboutouk 4:17
And on the 25th it was a Monday, absolutely fine, I was swimming every day. And the last day was Wednesday, I went for a long cycle ride. And then I picked up my mom from the airport, went for dinner, then went back.
Sherif Aboutouk 4:35
I was in the house and I slept and I woke up and I have a habit of waking up during the night which is a really bad one and I was scrolling through my phone and I’ll never forget that I was looking at a message I just couldn’t read it properly.
Sherif Aboutouk 4:56
Which is literally what I have now. But then you know, that’s weird and I have this really bad pain on that side of my head, which I understand is not necessarily a symptom of stroke. So that was a Thursday morning. My mom’s like, oh, let’s go out, it’s my first day.
Sherif Aboutouk 5:19
I was like, look, you know, you go see my aunt and I’m just going to, you know, sleep it off because I’m not feeling well. I slept off on Thursday, and Friday came out, and my aunt was in the house. And I remember asking my mom, Oh, can you just give me the phone?
Sherif Aboutouk 5:36
And she gave me the phone. I was like, Oh, that’s my wallet. And I just was very confused. And also the vision part, I wasn’t seeing very well. And then she said, look, I’m gonna take you to the eye hospital.
Sherif Aboutouk 5:51
Because that was the most significant impact I had. And then on the way to the hospital, I said, Look, I think I need to go to a proper hospital, not just an eye one, and went there. They scan my head. They said you had a large ischemic stroke in that part of the brain and you’ll have to stay in and that’s it.
Bill Gasiamis 6:26
Was that the first time you had was scanned? So you went to St. Mary’s Hospital? And they didn’t go down that route?
Sherif Aboutouk 6:37
No, they didn’t which is quite frustrating now knowing that it could have been saved.
Bill Gasiamis 6:45
Then you’ve gone through this whole process, you’re feeling numb, and you had the four incidences of numbness over four weeks? And was it immediately after you had the vaccination or was it a little time later? When did you feel it kind of started to be noticeable this numbness?
Sherif Aboutouk 7:11
So I had the vaccine on the 21st of July and I think there was the London triathlon on the next weekend and I normally would drive to full plate, do a few laps of open water swimming, and the first episode I remember because was after a swim.
Sherif Aboutouk 7:35
I literally finished the swim got in the car and went to clean the car but you know how you kind of collect all the rubbish in your hand so you can put it in the bin and then I got up on I remember just couldn’t feel my hand I just thought I swam too much.
Sherif Aboutouk 7:51
That’s literally what I thought of like calling my friend telling him about it and calling my mom “Oh maybe see the GP” but I didn’t think much about it was literally a five-minute and then it comes back.
Sherif Aboutouk 8:03
That was the first episode. The second episode was the day after the triathlon so that’s a week after and again I just defined it that’s maybe like just me having you know, after the triathlon I’m not feeling too well so I didn’t think much of it.
Sherif Aboutouk 8:25
The third one is when I decided right this is not okay, I need to go to NE which was two days or three days before I go there to NE, and the worst one that happened to me was when I was in the bathroom. That’s Friday right before I go.
COVID vaccine might have caused the ischaemic stroke
Bill Gasiamis 8:45
Yeah. And you mentioned the vaccine, do you feel like a significant here? Has it played a role in this outcome?
Sherif Aboutouk 8:57
Look, I’m not a conspiracist, and you know, I volunteered to take the vaccine because I thought it was the right thing to do. But now with all the research coming out, especially this year about how there are a certain amount of people that can get blood clots as a result, I have no history, medical history of any sort of issues beforehand.
Sherif Aboutouk 9:26
Obviously, you can not be 100% Sure. I just never had these episodes until I had the second dose. I could be obviously mistaken. But that’s the only thing that I can put my hands on and say right this is the only change I had before the stroke.
Bill Gasiamis 9:45
But that’s what they’re hanging their hat on the hanging their hat on or you’ll never really know. It’s such a bullshit situation to find ourselves in many months after. Most of the people were forced to take a vaccine that was unproven, that was very new, etc.
Bill Gasiamis 10:05
And you heard all the benefits for it, and all the reasons for it and all that kind of stuff. And you thought, Okay, well, you know, I’m saving humanity if I take this vaccine, but then who’s saving the people who have been adversely affected by the vaccine? And how are they going to go about explaining it, and all we’re getting is the washing of the hands?
Bill Gasiamis 10:24
And then they’re leaving people like you in a situation where you’ve got to work it out yourself, and it’s so terrible. That’s the part that kind of frustrates me. Clearly, there are some people that are affected by it.
Bill Gasiamis 10:35
And those people should be treated a little better, even if we don’t know, even if it’s not certain, even if we’ll never really know, well, why don’t we just look at the coincidence of the timing of the two incidences? That one being the vaccine and one being the event, the health event? And going well? Why don’t we put some money into helping these people like we put money into helping everyone else from dying from COVID?
Bill Gasiamis 11:04
The one and we put some money into helping the people who have been adversely affected? I’ve had two shots of the vaccine, and I haven’t been adversely affected. And I took it unwillingly. But I took it because they weren’t going to find us $100,000 If we got caught at work without a vaccine.
Bill Gasiamis 11:24
And when you haven’t worked for two years, and somebody’s saying to you, you can risk a $100,000 fine, I haven’t got $100,000 to pay to the government. So I can go and work. I think it’s ridiculous, right? But it’s but what’s interesting is, it’s a very, it’s one of those topics that’s become very, you’re either on one side, or you’re on the other side, there’s no middle ground.
Bill Gasiamis 11:48
And I think that there’s no middle ground, in the way that they avoid supporting people who may have been affected by a vaccination that they’ve taken, it’s a way of washing their hands. So they divide and conquer, you’re either with us or you’re against us. Even if you’ve had the vaccine, and it did affect you, you still should be for the vaccine.
Bill Gasiamis 12:08
And it’s like, okay, individually, I shouldn’t be anything that I don’t want to be. But again, we’re being coerced, to be told how we should be responding to the vaccine, even after it’s harmless. And there’s no one coming forward going. Let’s help you out. Sharif. We don’t know if it was the vaccine. But the coincidence is, you know, we’re going to take that into consideration.
Bill Gasiamis 12:35
And now we’re going to throw as much money as we can at you as we did to the rest of the population. To save them, we’re going to try and save you, I think it’s largely terrible. And I might lose friends and followers for that, and I don’t really care. But we need to take care of everybody, at every level.
Bill Gasiamis 12:57
And when when when you’re in a situation where you’ve had a stroke, and you’re a fit and healthy person, then there’s no real reason why you should have had an ischemic stroke in the back of your head. I think that people have been let down again, a second time, you know, so I get really passionate about it, and I’m on your side, and I want to help you out. I don’t want to also make this a conspiracy thing, because it’s not a conspiracy thing.
Bill Gasiamis 13:27
There’s no such thing as a conspiracy. It’s just a reality. And we’ve had enough time to reflect back now and go Well, we, we made some really big decisions over a short amount of time. And we didn’t contemplate the consequences. And one of them. One of the consequences here in Australia after lockdown is that in Australia, in Melbourne, we were locked down for one of the two years, almost an entire year, we were completely locked down.
Bill Gasiamis 13:58
And now we’re getting the after-effects of that we’re seeing we’re seeing that there’s a mental health epidemic, there is a lack of staff epidemic, so people cannot find staff to fulfill roles in businesses. And businesses are shutting down because all the people that were in Australia, or the immigrant workers left, and they’re not coming back.
Bill Gasiamis 14:23
And you know, in the beginning, the racists would say, we don’t need immigrant workers. They’re taking your bloody jobs, or Yeah, right now that they’re gone. You want them back. But they’re not here because you didn’t support them while they were here to stay here. You told them to get out of this.
Bill Gasiamis 14:44
We don’t want them in your country, in our country because, you know, they don’t have any rights here. But now they’re going well, the borders are open again. We want you back. I mean, come on guys, like it’s one or the other. You either want these people to help us fulfill the roles that we need to fulfill and avoid the disaster that’s going to come down the pipeline.
Bill Gasiamis 15:05
Because now we have the disaster of too much debt, Australia has got more debt than it’s ever had. It’s got fewer people to do the jobs. It’s got a population that became sick after the vaccinations and heart disease is on the rise spiking, like dramatically up. And we’ve got all these pressures on the medical system.
Bill Gasiamis 15:28
And we’ve got all this stuff. And no one’s coming back and going, we were wrong. No one’s going back and going, we’re sorry, no one’s going back and doing any of that stuff. And I think it’s the responsibility of people who make decisions like that to when they reflect back on their decisions, instead of trying to hold your position in power and continue to divide the population and tell everybody what, how we should either be on this side or that side.
Bill Gasiamis 15:54
And that we should Dobb on our friends if they if you see him outside in the cafe when they should be at home or locked in their house. I mean, it’s just the whole thing is bloody ridiculous. And I feel for people like you, Sharif, and it bothers me that they won’t tell that they’ll wash their hands of it and say, Oh, well, you know, we don’t know, we’re not really going to know. It’s terrible.
Sherif Aboutouk 16:20
look, I mean, I think in Australia, you had one of the most draconian lockdowns and I mean, I think they started off by fear was like, you know, it was very taboo not to say if you say you’re not going to take the vaccine. Now, for some reason, people can just publicly say, and until can people go okay, there’s no problem.
Sherif Aboutouk 16:41
And I think having your couple of this by giving you a fine, it just has no other alternative, but to take it. And look, I mean, again, you know, this is, you know, if it comes back with time, I would, you know, maybe I wouldn’t have taken it just for myself.
Sherif Aboutouk 16:57
But then there was always that collective thinking in the news everywhere that you are helping other people. So it’s not about you, you might not get it, or you don’t want to transmit it, which actually, after a while, did improve that was what like that.
No one talks about covid-19 anymore – Sherif Aboutouk
Sherif Aboutouk 17:18
And I think, you know, what I would appreciate now at least, is that someone, as you said, is to kind of just have a conversation about it, and be open about it, but no one talks about COVID anymore.
Sherif Aboutouk 17:32
They only talk about the, you know, the economic instability, no one talks about the vaccine anymore. And I think there’s a rest responsibility, not just from politicians, you don’t really expect much of them.
Sherif Aboutouk 17:44
But I think the responsibility of people that are popular that talk about it and bring it on. And I think, you know, I remember when I had the stroke, I was just Googling every single thing. And it was really hard because I have amblyopia so I don’t see my right side.
Sherif Aboutouk 18:04
So reading is really hard. And I was trying to see what’s linked to and then you hardly got any results linking to the vaccine, and had a bit about AstraZeneca, then, but when I do it today, there’s so much research that says, right, no one’s gonna say it’s 100%.
Sherif Aboutouk 18:22
But then when they do the study, some people do get blood clots. So I think it’s unfortunate. And it’s, you know, I try not to think about it too much in terms of, I’ve been failed by the because, you know, I already have a lot to deal with on my plate.
Sherif Aboutouk 18:39
And I think what I don’t want to do is to find another excuse to be like, right, it’s not going to help me, so I’m going to help anyone. So I’m trying to think about it more. You know, I was one of the unlucky people in a way, you know what I mean?
Bill Gasiamis 18:54
Yeah, I love that man. It is your right. It definitely needs to be something that we’re aware of. It needs to be something that we know how we got here. And as you said about the politicians, no one’s saying that it was our decisions during COVID lockdowns that ended in the economic disaster that we’re finding now.
Bill Gasiamis 19:12
Now, they’re just talking about the economic disaster. It’s a separate thing as if it wasn’t us that put you in this position. Right. And I agree with you. So what we’re doing now is we’re addressing supposedly, the issues without actually revealing the cause of the issues.
Bill Gasiamis 19:29
And like yourself, is no point going down that path and I’ve avoided getting engaging in those types of conversations as well for the most part because it’s not helpful. It doesn’t help my mental health. It doesn’t help anything other than getting me angry with somebody or getting them angry with me.
Bill Gasiamis 19:48
And what we should be doing is during economic difficulties coming together, finding ways to support each other, going to your neighbor, that one that probably rang the cops to say that you’re outside and going can I help you out with something, you know, can I get you a meal or whatever, because we have people that are in that situation right now.
Bill Gasiamis 20:06
There’s never been more homeless, there’s never been more people living under the poverty line who can’t pay their energy bills. You know, there are so many issues. And we haven’t united. After all the stuff that we went through in the last two or three years, we haven’t yet reunited, so everyone’s still divided.
Bill Gasiamis 20:26
So now when we need each other more than anything, we haven’t got each other because we can’t put our differences aside. And we need to put our differences aside doesn’t matter to me what your political affiliation is, or, or what your vaccination status is, or any of that stuff. My podcast is a classic example of what we need to do find people from all around the globe that are completely different and bring them on the podcast.
About stroke recovery being google proof
Bill Gasiamis 20:54
And let’s talk about stroke, recovery from stroke, overcoming a stroke, so that we can bring all these different people from different religious backgrounds and all that together, where we have something in common.
Bill Gasiamis 21:07
And we celebrate that and we support each other. That’s what it’s about. And you know, what you’re saying about the censorship on search engines, and all that kind of stuff that does happen. That’s a reality because Google doesn’t prioritize my podcast as content that is necessary for stroke survivors.
Bill Gasiamis 21:32
So I cannot advertise my content the same way as somebody who was talking about say, a paparazzo, who was talking about the photos that he took of, you know, famous people, if you had a podcast, his podcast might be number one because he can advertise that simultaneously on all these platforms.
Bill Gasiamis 21:58
Whereas Google restricts the way I can promote my podcast because it’s not considered the authority in stroke rehabilitation, and all that kind of stuff. And I kind of get it. But there is no nuance there. It’s either we’re promoting the big fish, or nobody, we’re not promoting the other people who are actually doing the work that supports stroke survivors.
Bill Gasiamis 22:25
So I’m really passionate about this. And I really don’t want to take it into that zone where it becomes unproductive. But I say it to give people things to think about. And that’s it, and then they can make their own decision, right? And then we are all going to move on as best as we can from everything that we’ve been through, as well as the stroke.
Sherif Aboutouk 22:52
I hate to disagree with you on this, but I disagree that the saying I agree that they shouldn’t really pop up your podcasts on Google search, you know, I started listening to you three months ago.
Why stroke podcasts are so important
Sherif Aboutouk 23:06
And I can tell you hand on heart. I only listen now to your podcast and have probably gone through 30 episodes or so. And the amount of knowledge and hope that I have gained from that is honestly, a hundred times more than the experience I’ve had in the hospital.
Intro 23:30
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. How long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 23:48
And doctors will explain things that 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 24:10
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.
Sherif Aboutouk 24:33
I was in Majorca for 4 days had a bunch of stuff done went 10 days back home in Majorca and then flew to London on a Monday. Tuesday I went to Charing Cross Hospital which is meant to be the stroke pinnacle.
Sherif Aboutouk 24:50
And long story short when they discharge you from the clinic. I think the one and the most important thing is that you know what, listen to this guy’s podcast. You know, there might be a disclaimer, like it’s not medical, but these are other people that have been through this thing, and they can talk about it.
Sherif Aboutouk 25:08
The thing is with neurology, it’s a black box, no one really opens you know, it’s not like if you have a sort of, you’re operating on a leg, you had brain surgery, of course, but I think for someone who did not and only had a stroke, all they can do is that take blood thinners, steak, statins, and I’ll see you in three months.
Sherif Aboutouk 25:34
And this is the charity for stroke that you get in touch with that, you know, they’re trying to do their best, but it’s also very limited. No one can really relate to a stroke survivor, and the stuff they go through emotionally, mentally physically, like some of that has been that.
Sherif Aboutouk 25:52
And I think, you know, I hope one day we become in, you know, hospitals and doctors just listen to this, because, you know, you know, what the neurologist kind of technique is, they all look here, there’s Can You Feel this? Can you feel that, and that’s it, oh, you have a stroke, can’t really do anything about it.
Sherif Aboutouk 26:15
But we do a bit of investigation, see, if you have a hole in the heart, MRI and the brain MRI on the heart. Some people do a lumbar puncture, lalala, and then sometimes in my case, it all came back negative, and then they go, right? We don’t know.
Sherif Aboutouk 26:32
And that doesn’t give me hope. Well, it does give me hope for me to listen to someone who might have much more of a disability than I do. And see that they have, you know, conquered the become stronger, and IE someone like yourself. And I think this is really valuable. And I think search engines should be looking at this differently.
Bill Gasiamis 26:53
I agree. The interesting thing is the Stroke Foundation in Australia is the first organization that I went to to get beyond stroke support. Because of the hospital, my experience was the same right. And they were great. They helped me out and I made a pate, and I’ve been a face of a few of their advertising campaigns. And I’ve done a TV commercial for them. And I’ve done a whole bunch of things for them. B
Bill Gasiamis 27:19
ut as far as uniting the people who are doing really good work in Australia to promote stroke recovery, they do a good job of that they’ve got that they get government-funded and, and funded by other people, I imagine them privately to run their programs, and they do a good job, but they can’t allocate enough funds to a podcast that is stroke related from their organization, they don’t really do a good job in having their own organizations podcast.
Bill Gasiamis 27:56
So you would think that they would reach out to the people who are doing that kind of work and promote it at their end. But they don’t. They don’t, they’ve never approached me. And they know what I do, they’ve never approached me to say, how can we collaborate, I don’t get paid for this bloody podcast, I do it for free, it costs me money, every episode that goes out takes a minimum of about 10 hours work to get it ready, including the interview.
Bill Gasiamis 28:30
And I’m trying to make some money out of it by promoting my coaching and selling a few courses and all that kind of stuff. But it’s never made any money. And I’ve been doing it too, since 2017. So it’s not money that I need. But it would be great if I had the opportunity to get it in front of the right people without doing all the legwork myself.
Bill Gasiamis 28:55
But their mandate is that they are funded by the government or whoever is funding them to raise awareness about stroke and to prevent a stroke from happening in the future. And they are told how to do that they need to do it in this certain manner. And you can’t allocate funds to this like that. This is what you get funded for. And this is how you have to show us that you’ve done it.
Bill Gasiamis 29:22
So at the very top of the spectrum where the government again is getting involved. Those guys, the government is missing out on an opportunity to decrease the amount of mental health issues the emotional issues all the challenges that stroke survivors face that’s costing the government money because when stroke survivors can’t get back to work.
Bill Gasiamis 29:45
They rely on government handouts unfortunately a lot of people to get through their bills and to overcome you know, their living situation and the rest of it so my my call how has always been to unite people but but people are very easily divided just because of our little differences, whatever they are, and our core beliefs, you know, and that we suppose that they should all think the same thing or not.
Bill Gasiamis 30:11
And, that’s where I get disappointed. And that’s why I just, I never talked about it, you’ve raised that you’ve raised some things that have made me talk about. So what we’re going to do here is, we’re just going to bring it to the air. And then if somebody hears this and goes, Hey, I know how I can help or I know how we can get in front of more people, I know how we can bring on a strike organization or wherever met, I am up for it.
Bill Gasiamis 30:39
But what I’m noticing is I’m getting contacted by a lot of people who are doing it on their own. A lot of podcasters are doing their own version of a stroke recovery podcast, but they’re doing it on their own. And then there’s a lot of amazing people who come on my podcast, who I share their information, you know, therapists have every kind of background.
Bill Gasiamis 31:01
But again, they seem to be doing a little pocket on their own in their part of the world. And it’s all fragmented, you know. And the only thing that’s not fragmented about my podcast is that it goes out on every podcast app. And that makes it easier than it used to be for people like you to find it.
Bill Gasiamis 31:21
And so there’s hope there. And I am thankful that it helps people like you, and it would have helped me when I was doing it. And that’s enough about me, man, I think this episode is supposed to be about you.
Sherif Aboutouk 31:37
I’m glad you bring this topic up. Because, you know, honestly, I think the only way you can help stroke survivors is by speaking to other stroke survivors and sharing your story, whether it’s worse or better, and see how they cope with things, at least that works for me. And I think how I Found You was searching for stroke on Spotify, I found this organically and there is a big part of your audience would be people seeking information.
Sherif Aboutouk 32:15
And your episodes are an hour an hour, 15 minutes long. And no one it’s not like a song or a reel or a show that are 10 seconds and then you can have a million people looking at it. But you think about it, someone is spending an hour and 15 minutes every day, at least for me to listen to other people voluntarily without being having any marketing or advertising.
Sherif Aboutouk 32:40
It just shows the credibility and the impact that you and other survivors doing by coming on to the podcast. So I think they 100% agree that we have more people like you united all together is going to make a huge difference to people that might have a stroke in the future.
Sherif Aboutouk 33:00
People that are having a stroke and don’t know they have a stroke or people that trying to recover from a stroke. And still struggling. I mean, I can definitely say I’m one of them. So, you know, I sometimes listen to your podcast, and I see, you know, I always said that to a couple of friends as well.
Sherif Aboutouk 33:17
It’s like, a lot of the people that you know, a big chunk of them are very optimistic, and they might have an even worse disability than what I have. And I’ve heard that quite a lot. And I agree with it. But I see where it’s coming from that I’m kind of secretly glad I have a stroke or something like that because it’s changed me change to where I am.
Sherif Aboutouk 33:44
And so what I think about this, is I don’t want a stroke. I don’t want it. I don’t want to have it. I wish I have my vision back. But I can see where that’s coming from. And that in itself gives me hope. And I think this is a very strong message that a lot of your audience brings to that podcast and you as well.
Stroke is the best thing that ever happened
Bill Gasiamis 34:02
What about me, man, I went through four years of shit, right? And then one day I said on the podcast, I think it’s the best thing that ever happened to me. And then it’s like, oh my God, what are you talking about? How do you come to say that? And then and you I believe that?
Bill Gasiamis 34:19
That is a very common thing in not only stroke but in lots of different health conditions that people suffer and go through and they say what you said Sherif, which is it changed me somehow for the better. Even though I’m going through all this stuff, it somehow made me think of things differently.
Bill Gasiamis 34:38
It was the reset that I needed. It was this it was that and it’s like well, okay, I get it, because that’s the race that I had and I was talking about it yesterday. And for me. What it did is it showed me how short time is time doesn’t mean anything. And today could be it. And if today is it what have I left behind?
Bill Gasiamis 35:00
And I’m not talking about my legacy, my 45-storey building in the middle of the central business district, you know, that says that’s got my name on it. I’m not talking about that. I’m talking about my kids. What are they going to think about their old man who was cranky, yelling, screaming, and thought that I was doing the right thing? And I’m being tough with them and rough with them and all this kind of stuff.
Bill Gasiamis 35:22
One of them thrived. The other one wasn’t enjoying it. But I thought now, one approach applies to everybody. What stroke showed me clearly, at least one of my kids was going to think I was an idiot when I died. And I was like, Oh, I don’t want that anymore. Okay, but now that I’ve made the decision to fix that, so to speak.
Bill Gasiamis 35:45
If the right word is fixed, but to make that better, it somehow opened the door for other things to be fixed. It wasn’t intended. But oh, that got sorted. Or it’s getting sorted, or it’s getting better things are improving. What else can I improve? Oh, okay, I’ll, I’ll try that. Oh, my God, that gave me pleasure, enjoyment. That made me feel good about myself. And then it’s like, now I’m looking for things to improve and make better.
Bill Gasiamis 36:20
Where before I was looking for things that were wrong, where the problem was, who was at fault, and why they aren’t doing what they were meant to be doing. And that just happened organically out of a fear that my kids might think that I’m a cranky guy when I died. And that’s the legacy that I left behind. So tell me about your version of how it kind of helped you to become better. Tell me about in what ways?
Sherif Aboutouk 36:53
I mean, probably, I’m still on the journey. So maybe I’m hoping in a couple of years, I’ll be able to say that. You know, I think there’s a number of things that I think you mentioned something about how time is so short, and I think I just became a lot closer to the people that I care about.
Sherif Aboutouk 37:22
And you know, having my mom with me than spending five weeks with me you know, I see my mom twice you know, two years a week a year, spending a lot of time with my mom didn’t want her to leave where you know, before be like, oh, when are you going to go home, that sort of thing.
Sherif Aboutouk 37:39
Just made me value relationships and made me think that I’m not necessarily a very religious person, but I know my religion if that makes sense. So, you know, Muslim, you know, I practice like, you know, definitely inside of me, I’m a true believer, but maybe not necessarily following it as much as I should. But I think made me also become a lot closer to God.
Sherif Aboutouk 38:12
And God is whatever God you want them to be God, right? Like, for me, it’s Allah, it’s God, it’s who I think of whenever I’m in a bad situation for someone else, it could be something else. But you start to think about things that you might not thought about it before.
Sherif Aboutouk 38:28
You start thinking about what really matters building memories and building relationships with people that you really care about. And your skills become a little bit more selective about who you want to hang out with. Who do you want to talk to? Who do you want to open your books to?
Bill Gasiamis 38:48
Why is that important?
Sherif Aboutouk 38:52
Its social life is a big part of your life, having people in your life sharing people that you can talk to them that whenever you want to be you know, your wife, your kids, your, your parents, your very close friends, living by yourself and isolating yourself from other people or just doing the things that activities that you like, but not really trying to invest in others is not in my opinion doesn’t necessarily help you.
Sherif Aboutouk 39:23
Because at the end of the day, if I’m walking down the street, and I help some stranger, I feel great. You know, it’s how to do you kind of its relationships is given taken you to invest in people, if you Yeah if you don’t invest in them, you’re never gonna get it back. And it’s the same thing you know, you can always take the kind of family relationship.
Things that matter after the ischaemic stroke
Sherif Aboutouk 39:49
If you kind of like just feeding your kids and when they’re 17, 18, they’re moving out you’re making the party because you can go out, ferry or whatever you’re gonna do it I’m not going to give you that the same way.
Sherif Aboutouk 40:03
And you probably have heard this. In Eastern cultures, and specifically in Middle Eastern cultures, family is a big thing you’re always going to find a family member living with you, the kids are never going to take you to the care home. And it’s not, it’s just how it is they invested so much in the person in their children, that children will never be like, Oh, I think you should go to.
Sherif Aboutouk 40:31
And sometimes it might be better for the mind, I totally agree with this, I’m not against it, but I’m just talking about how when you invest in something, you’re always going to get it back. And I think that the stroke, it made me realize who are the people that are actually valuable to me, the ones I want to invest time with, and who are the ones that can be acquaintances.
Bill Gasiamis 40:55
I think your story, is a very interesting one. So one of my really good friends, she’s been through a traumatic couple of years where she lives lost her mom and her brother and then lost her dad a year later, and they’re not religious at all. And what she said is that she was with her dad when he was, you know, his last few breaths and was like, What are we doing, and he was so much into sports.
Sherif Aboutouk 46:57
And she was reading to him, sports news. What, once in the story is that God is whatever you want to make God if, for him, it was sports, if that’s what condom if I was in that situation, they would read the Quran, you know, it’s, you know, if I listen to the Quran, I get very emotional, if you listen to it, nothing’s gonna happen to you.
Sherif Aboutouk 47:22
It’s, you know, it’s, it’s how you. So it’s how, if you eat carrots every day, for the last 20 years, you will love the character, you’re always gonna eat cat, it’s how it is if you kind of living in an environment that is influenced by religion, and then you are somehow going to be influenced by that.
Sherif Aboutouk 47:43
Now, it’s not a question of if it’s right or wrong, that’s I’m not going to get into this. Because you the three things that I really don’t care about what you eat, what you do in bed, and what you believe in, had none of my business, you know, you can do whatever you want to do.
Sherif Aboutouk 47:59
As long as you are a decent man with me, this is all a cares, you know, decent person. So, yeah, I totally understand what you say God is within me. It’s whatever you make it some people worship different things. But if that makes you feel that rocks your boat, that’s all it matters, right?
Bill Gasiamis 48:18
Yeah, I think you summed it up beautifully. I think that’s it. And that’s how it worked for me. And it works. Because it just seemed to be the first time that I’ve been able to really get results from myself. Where I was, I was always in my own way. I was in my own way in life, with my children with work with everything with stroke recovery, until I wasn’t in my own way anymore.
Bill Gasiamis 48:45
Now, that doesn’t mean that I don’t have doubts. And second thoughts and concerns about whether what I’m doing is right or wrong, it just means that I am at least able to see when I am in my own way. And I can catch myself and go alright, stop doing that and move on.
Sherif Aboutouk 49:06
Yeah, and look, there’s also like, there’s something really interesting now about me that I would think what was I upset about before the stroke, you know, what was actually you know, that it’s all bullshit. You know, what I mean? I think at some point, the more life kind of throws things at you, the more you start actually becoming a lot more receptive to getting up.
Sherif Aboutouk 49:35
I mean, 50 Cent is not normally someone I’ll quote but he once quoted and said that you know, you very hard going to find someone who’s struggling with life, who’s going to tell you, I’m depressed and I’m stressed out, they’re too busy. They’re running around doing this and doing this and doing that and, you know, I see a lot of people that might have very successful at work, they might have children that, you know, autistic, they need to look after them, they’re also looking after their dad.
Sherif Aboutouk 50:08
And you see that they’re successful, almost everything and you see all the people that might have, you know, born with a gold spoon in their mouth. And then they always talk about stress and depression and stuff like that. I’m not I’m saying it’s not there. Obviously, it is there as a medical condition.
Sherif Aboutouk 50:25
What I’m saying is that when life throws at you stones, and then you have gummy bears thrown after you afterwards, you go all right that’s just a gummy bear man. But if you only have gummy bears, it’s always gonna be a gummy bear. Do you know?
Bill Gasiamis 50:42
If you only had gummy bears, you always feel that they’re stones because you’ve never had these stones. Yeah, it gives you a contrast, doesn’t it? And that’s the thing, you said a great thing. It’s like, you didn’t know what you were angry about before. But before you were angry, and that’s describing me, man, and it’s like, Oh, what, what was it again?
Bill Gasiamis 51:05
Why was I and it’s just something that I had somehow worked up to 37 years of it, right, I had worked slowly to be at that point. And then, the bleeding, my brain happened, the brain switched off, and the head stopped telling me stories because it wasn’t actually working. And then my art came online.
Learning how to use the heart after the ischaemic stroke
Bill Gasiamis 51:27
And then it’s like, wow, okay, I can see life through my heart, I can actually observe the world through my heart. And my head is not telling me a story about that. And that was more joyful and more connection was happening and, you know, things were being put to rest.
Bill Gasiamis 51:50
And I wasn’t angry, and I was less, whatever. And is that how you experienced it as well? Is that does the stroke kind of then goes? What happens in the head and then something else comes to life? Did it come to life? How did it emerge?
Sherif Aboutouk 52:12
So I think there’s part of it, where when I was in hospital in Charing Cross Hospital, I was in the ward and seeing people around me and how they were affected. I mean, I look fine, I still work out every day. And, you know, I still play tennis, which is really hard with a heartbeat, half blind, I don’t cycle outdoors as much as I used to do.
Sherif Aboutouk 52:36
But then a lot of the things that I used to love doing, I can’t do anymore now. And, but I also kind of when I was in the ward and seeing people can’t move, can’t talk, getting seizures, and looking at them and thinking, right? I could have been one of them. It kind of feels like or ungrateful for what I have.
Sherif Aboutouk 53:03
But then I always kind of I can’t still get over the thought that haunts me every day, why me? Why did I have to go through this? What do you know, I would love to sit here and say, Look, you know, you know, a past the three stages that you always talk about building emotional, the mental, and the physical.
Sherif Aboutouk 53:24
I don’t think I’ve passed any of them yet. I’m still on the journey. And I’m hoping that one day I will. But it just gives you a very different perspective and lens, when you see what other people have been. And this is what, again, what your podcast has helped me because, you know, I’m talking about a bunch of people that were in the ward next to me, and you know, hearing about their stories.
Sherif Aboutouk 53:50
And hearing about other people going through the same thing younger than me. 21-year-old has a bleed in the brain and people that can’t see on the right side, like some of your viewers just so you know, you’re not alone in this, you’re not just cherry-picked. And you just need to, you know, being sad is not going to help me.
Sherif Aboutouk 54:12
So I’m gonna help anyone, right, being upset, not going to help anyone. So trying to do the most you can do with what you’ve got now is what I tried to do. But I can’t help the fact that every day I look in the mirror, I can’t see my right eye. It’s just so it’s very spooky as well, like you, you know, be walking in the street and someone walks on the right side.
Sherif Aboutouk 54:39
I wouldn’t see them until the vet or I would. It’s quite interesting. This story is actually really interesting. I remember and this is how shows you how human interactions are really important. So when I came out of the hospital, I remember going to Marks and Spencer’s supermarket around here and wanting to buy to react system.
Sherif Aboutouk 55:00
The worst thing for someone with hemianopia is supermarket shopping or any crowded places because they just get confused, they can’t see. And normally when you go look at the aisle and you just look there, you can see all the brands, you know, that’s fine. That’s the reality.
Sherif Aboutouk 55:15
And then now I have to focus. And I asked the guy that was on the first day of the hospital, was it Iraqi source, and gave it to me. Oh, somebody because I just had a stroke. And the guy was all I had a stroke, imagine law.
Sherif Aboutouk 55:30
And then now, I don’t even mentioned it to people. Because back then I needed that emotional connection with people. I needed someone to go, Oh, what happened? Which I didn’t get from the guy there. But anyway, it’s yeah, it’s really interesting how it makes you think differently about certain things throughout your recovery.
Bill Gasiamis 55:52
Yeah, I would say to you, I’ll tell you a bit of my insight on why I am where I am. And it’s got a lot to do with what I was doing before the stroke. And because I was angry, and an ill-guided I was ill-guided by myself, I was that at least I was at least getting counseling. So I had been in counseling since the age of about 25.
Bill Gasiamis 56:17
We lost a very loved one, a dear brother-in-law of mine, who was in his 30s when he passed away, and I was, yeah, thanks, man. It’s good. Now, I mean, it was five years. I was five years younger than him. And it was the first person that I had known and truly loved that passed away.
Bill Gasiamis 56:38
And it was so hard, devastating. And I went through this process of going, I need to get some help for this because I don’t know what it means. It’s, I’m going to how to deal with it. So what I was doing was going to counseling, and by the time I got to the age of 37, I’d been in counseling for eight years.
Bill Gasiamis 56:58
And I’d go sometimes monthly, sometimes I wouldn’t go for six months, and but every time I went, I think what it enabled me to do was overcome some of those things that had been haunting me from my early years to my say, the 25th year of my life. And then it was like, I was then just dealing with life events as they were occurring.
Bill Gasiamis 57:21
And I wasn’t dealing with a compilation of things that I’ve never dealt with. So as I got to stroke 37 I was kind of like, ready, I was ready to Alright, what’s next? What is this thing? How am I going to overcome it.
Emotional recovery is the most important recovery
Bill Gasiamis 57:37
And I think the emotional recovery for me was the one that was the most important, I see it now I didn’t see it, then it was the one that was the most important because that allowed me to at least have some relief in my head, which said, if you do die, at least you make good with the family.
Bill Gasiamis 57:56
And that takes a burden off my shoulders, and then I feel lighter. And then I can focus because I’m not in it. My energy is not getting drained by my emotional state and my emotional challenges, then I can focus on physical and mental recovery. And the mental one is the talking one. So so I’ll separate the mental recovery from the emotional recovery.
Bill Gasiamis 58:20
So the emotional recovery was I go there, and I speak about what feels painful, what feels in my heart painful. What I’m doing when I’m doing mental recovery, I’m talking through my thinking process to see if my thinking is supporting me, or if it’s not supporting me. And then I’m replacing thinking patterns that don’t support me with new thinking patterns that do support me.
Bill Gasiamis 58:52
Okay, so I would always ask I’ll tell you what the question that I would ask, the question would be does this serve me? And that was it. That question changed my life because I would get to the point of being in the car, for example, and the guy in front of me cut me off, but we didn’t have a collision because he saw me I remember I saw we stopped no one had a collision.
Bill Gasiamis 59:28
And then I would oh, what getting angry that’s not going to achieve anything that’s not going to serve me what will serve me acknowledging the guy made a mistake. He acknowledged that I know that he made a mistake and he said so. And then all we did was move on. So does it serve me really made me think deeply about my behavior and am I getting myself wound up for no reason?
Bill Gasiamis 59:53
And then can I move on and let it go? So that changed my thinking. That emotional one was The family one, that relationships, when it’s about relationships, emotional stuff, it’s about forgiving the past, people who have harmed you, people who have done the wrong thing inadvertently, I forgave my parents were just being themselves, I forgave them in a way, which was like they did the best they could with the resources that they had available to them.
Bill Gasiamis 1:00:23
I mean, they were hard, the educated, they left Greece with nothing, they came to Australia with nothing. They made a career, they made a life, they made a family, they made all these things. And it’s like, with nothing, they achieved all of that. And I’m in Australia, and I’ve got everything.
Bill Gasiamis 1:00:41
And I reckon that it’s too hard to have a life. And I’m complaining about that. So I forgave my, my parents, for, for what I used to, it’s not true, but I used to sort of make it like, I got the wrong parents, you know, what a terrible thing to say about your parents that you got the wrong parents, they taught me in the best way they could.
Bill Gasiamis 1:01:06
And as a result of that, I happen to be living in born in Australia, one of the best countries in the world to live in. I mean, you know, so there’s that. So I separated the emotional part. And the mental part, understood that they are different, but they both serve me. And I’ve, if I ever come them both, if I deal with them both, they’re both served me really well to move forward with our baggage.
Bill Gasiamis 1:01:30
So that I can really focus on my physical recovery because that’s where the biggest challenge for me lies. Now, my biggest challenge is my physical recovery. And it’s kind of got to the point where now it’s maintaining what I’ve recovered, and not losing it. And not going backward as I age.
Bill Gasiamis 1:01:51
And as my brain goes through the normal aging process, whereas, as it ages, you know, people lose some function, and they lose whatever they lose as their brain ages. So my aim now is to just keep my brain in the most optimum condition, I can possibly keep it right. So if people have never, some people don’t grasp the concept of emotional recovery, they can’t sort of separate it or isolated it and see it as a thing.
Bill Gasiamis 1:02:19
Because they have barriers built up around their heart. And if somebody who’s listened to this past podcast, or watching it has ever said, I am never going to let another person treat me like that again, or harm me again, there’s a good chance that they’ve created a wall and a barrier, they did it at a time, which was really difficult.
Bill Gasiamis 1:02:42
And they’ll protect their heart and themselves from future pain and suffering. But then, when they have grown up and continued with life, they’ve forgotten that they’ve said that and to pull the barrier down, and to open their heart again, and to let people in. And I was creating kind of little barriers.
Bill Gasiamis 1:02:59
And I was really the kind of guy who wore my heart on my sleeve, really emotional, really getting upset at the drop of a hat. And everybody thought that everyone had it in for me, thought that everybody was, you know, laughing about me and teasing me and doing all this kind of stuff.
Bill Gasiamis 1:03:16
And it was just not true. It maybe did happen in the schoolyard when I was seven or eight or nine in one particular lunchtime. And I realized that I was still behaving like a school kid at the age of bloody 37. And the people who I was behaving like that to was the school children that I had in my house. You know, and it’s does that serve me? No. Put it aside.
Sherif Aboutouk 1:03:49
Yeah, I think I think you mentioned a very interesting point there. It’s very brave of you to admit, no, I think the first thing to kind of change is to admit that you were wrong. And I think many people don’t do that. And the first thing that you said someone something else got defensive nowhere or trying to do this. And, you know, I think I used to work for Amazon for nine years.
Sherif Aboutouk 1:04:19
And we live day in and day out with leadership principles, and one of them was vocally self-critical. And I think we get ranked on a number of leadership principles. And I think, something we need, we might need more of is people to go you know what, I’m wrong.
Sherif Aboutouk 1:04:37
I was wrong, and I’m going to change it. But the easiest thing and I think you articulated it really well here, the easiest thing is to say it’s not my fault, it’s my parents, it’s not my fault, it’s this, it’s not my fault it’s my stroke, it’s not my fault it’s this.
Sherif Aboutouk 1:04:56
And the more you do with this, the more it becomes a habit And it’s really hard to change habits. So for you at the age of 37, for whatever reason, this was the stroke of something else, and you’ve managed to change the mindset was like, that was bullshit, I need to change things.
Sherif Aboutouk 1:05:14
And now talking about it four, five years later. I think he’s a great example of how you should change. I don’t necessarily, I cannot say I’m on that stage yet. I still cannot decouple the physical part from my mental and emotional parts.
Sherif Aboutouk 1:05:35
And I need to get over that. Because every day I think about it, and I just get really sad about it. And I think I need to become more of what you are saying is nothing’s going to change the oil and gas division back, it’s never going to happen. You can adapt. So just live it and stick up. Do you know?
The power of apology
Bill Gasiamis 1:05:57
Yeah, I’m going to inspire you now. Right. So this guy, before I inspire, I’m going to tell you one of the best results that I ever had was with my brother, my brother and I, he’s older than me, cat and dog, completely different personality we fight all the time before, right?
Bill Gasiamis 1:06:14
And were having an argument, my parent’s house had dinner, he was completely wrong. And we never discussed it again since that day and the day after, but I’ll tell you that day, I left the house and for the first time ever, he never said goodbye to me. And my mom was going your brother’s leaving.
Bill Gasiamis 1:06:37
For God’s sake, say goodbye to him he never said goodbye to me. I won’t tell you what he said. The next day, I rang him up and apologized. I have no idea what I apologized for now he probably won’t listen to this episode. So I’m not going to tell him he’s not going to know the trick that I use to make things better.
Bill Gasiamis 1:06:57
I just rang up and apologized for no reason. And I just said I’m sorry. That’s it. And I said it, I don’t know how many times I said it. And I said sorry, I think I haven’t told him. I think I might have told him I was wrong, but not in those words. That brought down his barriers, that made him feel listened to, that made him feel like I acknowledged his state of mind at the time or his emotional state at the time.
Bill Gasiamis 1:07:27
And it just brought us together, that one conversation brought us together from then on. And he’s not a different guy. He’s the same guy. But we have a different way that we deal with each other now. And I think he got a lot out of what you said. Me, investing the time to acknowledge him at that hard stage that he was going through whatever it was, and he never told me.
Bill Gasiamis 1:07:53
So I had the best result ever just by apologizing to somebody for no reason that I didn’t need to apologize. But I felt like it was the best course of action. Right? And it was, it was a great result. And my brother is an awesome guy. He’s just my brother and we’re always gonna disagree on stuff.
Bill Gasiamis 1:08:13
And then to inspire you. So there’s a guy called Paul Bach-y-Rita he’s a scientist. And he’s passed away now. And he was born in the probably 1950s or earlier 19. I actually probably earlier probably in the 1930s. And he was a scientist and he was researching Neuroplasticity. And he was trying to understand how Neuroplasticity works because his father had a stroke.
Bill Gasiamis 1:08:39
And they wanted to help him recover. Now, the science of Neuroplasticity goes back to the early 1700s. Like, it’s really old. But of course, back then they didn’t have the technology to actually show neuroplastic change happening in the brain. So what they would do is they would put out these theories, and they were all based on theories.
Bill Gasiamis 1:09:01
And they’re all based on rat models. So showing changes in the brain of a rat, who was trained to do certain tasks and a rat who wasn’t trained. But it was inconclusive because nobody could definitively say that. We saw that as a result of those exercises. And we observed that happening on an MRI scanner or whatever.
Bill Gasiamis 1:09:22
And all that neuro Neuroplasticity sort of work. It wasn’t called that it was called something different. But it all kinda kept a bit pushed aside, getting pushed aside, pushed aside pushed aside in the early 1900s. In the early 1800s.
Bill Gasiamis 1:09:38
There were a whole bunch of studies done in Neuroplasticity, and again, it was pushed aside until about the 50s and 60s, it started to get taken more seriously because there was more evidence to prove Neuroplasticity and the people who were saying it, were able to create better a better case for the fact that it actually existed.
Bill Gasiamis 1:09:59
And it was hard Putting in the brain changes. And it was the adult brain that they were arguing about, they felt that once the adult brain got it got to a certain stage, it became fixed, and then it never. And then it never went, was able to change. And that’s why doctors used to say, after somebody had a stroke, well, they’ll, they’ll never walk again. And then people would never walk again, improve the doctors, right?
Bill Gasiamis 1:10:25
And then this guy pulled back. Paul Bach Y Rita comes along, and he’s a scientist. And he, he says, I know, we’re going to take care of dad, because dad has had a stroke, and we’re going to help him recover. And his dad made an amazing recovery. And the work that Paul did with his dad then evolved into this device that made blind people see.
Bill Gasiamis 1:10:47
But not with new apps, not with new eyes, and new retinas and all that kind of stuff with the skin. Right? Yeah, you’re looking at me strangely. And it’s like, if he’s, he had this device, and it was like a cap. But in front of the cap, there was a big band. And on that band, there was a whole bunch of pins.
Bill Gasiamis 1:11:08
And they weren’t sharp pins, the little pins, and they were blunt, and as the senses picked up an object, say it was a basketball in the front of this person, the senses would respond to the skin and press the circle of the basketball in a very, in a very rough form back then it would press the basketball onto his forehead. And he would then be able to get that signal converted in his head, and he would be able to say that’s a basketball.
Bill Gasiamis 1:11:47
And this person who was completely blind, just no vision at all black, both eyes, he was like, got him to the point where with training, he was able to pick up that basketball and shoot it into a bin, a rubbish bin that was further ahead in the room, and he would get it in there. And then he would be able to see playing cards that had, you know, the ace of spades on there, and the hearts and all that kind of stuff.
Bill Gasiamis 1:12:13
And he’d be able to recognize them. That technology has led to the next device that pulls back your reader created, which is with a lady I’ve interviewed Cheryl Schultz, who was the first person that was able to replace her last center of balance. So in her head, all the crystals and all the stuff that caused balance, she lost it all. And she was able to replace that with her tongue.
Bill Gasiamis 1:12:45
And what they did is they put a device that when she moved forward, zapped her tongue forward when she moved back, except the back when she moved left, except that left, and when she moved, right, except that right. So the tongue started to recognize that when the movements happen back forward, right center.
Bill Gasiamis 1:13:02
The tongue started to recognize that she was moving and leaning and therefore to correct. So perhaps this inspirational story is for people who go through this and Paul Bach-y-Rita never experienced the deficit like you experience other stroke survivors experience. He just did it out of curiosity.
Bill Gasiamis 1:13:28
He just wanted to see if it was possible. But maybe this is to inspire people to feel hopeful about the fact that technology and thinking in a different way and having this new way of experiencing your body opens up doors that you’ve never possibly imagined, could be open for you.
Bill Gasiamis 1:13:52
And imagine being the first person to be the model for how to help people regain their balance. And now this was done in the 80s. And in the early 90s, Cheryl’s story starts in the early 90s. These products are now available, you can buy them online, and people are buying them through an organization that was funding and supporting Paul Bach-y-Rita’s work, and that’s a proper product now it’s taken 30 or 40 years, and now they sell it every day to people.
Experiencing the deficits differently
Bill Gasiamis 1:14:27
So my experience with my body feels different because my left side feels completely numb when I’m tired. You know, I lean over a little bit and it feels weird and all that. My experience with that has, I see it as a this is an amazing way for me to notice, another way for my body to exist another state for it to exist. And if both sides felt the same way, I wouldn’t notice the difference.
Bill Gasiamis 1:15:01
But because both sides feel different, I noticed the difference. And then there are some days where I don’t notice the difference at all, even though it is different. And they’re the days that get me interested. It’s like, oh, how come I didn’t notice it today? And then I noticed that and then and then it’s over.
Bill Gasiamis 1:15:18
And then I go back there. Perhaps there is a piece of technology that you or somebody else, whoever, who has this experience with a vision on one side, can develop that deals with peripheral vision loss, and then can support people like you to go into, to feel comfortable about going into a supermarket and walking down the road.
Bill Gasiamis 1:15:41
And doing all the things that you need to do without feeling conscious about I can’t see that side. Michael Merzenich, another guy who was interviewed worked on research projects that were as a result of pullback, the Raiders work and these other pioneers developed, the first cochlear implant part of the team that helped to develop the first cochlear implant, which would not work, he told me, it would not work if it wasn’t for Neuroplasticity.
Bill Gasiamis 1:16:09
He goes, it’s a piece of technology, it doesn’t actually do anything. The brain is what makes the technology successful is what makes it work. And then he’s able with that research and a whole bunch of other guys in Australia and around the world that were able to give hearing back to people who had lost their hearing, by rerouting it and going through the back of the skull.
Bill Gasiamis 1:16:32
And sending the waves to a part of the brain that picks them up and translates them into language into sound. So it’s like right now you’re in the thick of it, you’re coming to terms with it, you’re getting used to your new self, you’re getting you’re overcoming your, your emotional and your mental challenges in your physical challenges.
Bill Gasiamis 1:16:56
And then one day you’re going to arrive, you definitely are going to arrive to that stage, which goes I’m alright with this. Or how can I improve this? Or what can I do better? Or how can I help other people? And it’s like, that’s how all these other people started. And I’m gonna say it again, and I said it a few episodes ago.
Bill Gasiamis 1:17:18
The perfect person for me to put up there as our new kind of idol to idolize. And not that I idolize anybody. But he’s like, is Stephen Hawking, the physicist who couldn’t do anything who had no movement, no nothing. And he was the best physicist in the world-renowned, with every award that you could possibly have. And it’s like, why can’t we be the best in the world at what we choose to do, even though we have these deficits, we’re not?
Sherif Aboutouk 1:17:53
I 100% agree with what you’re saying, as really interested in what you mentioned about technology because it was the new device that I saw on the news a couple of days ago, that literally sticks on your stomach. And if someone has Parkinson’s and it turns it on, he’s always shaking, as soon as they’re not he stops or he can walk, he can have a cup of tea. He’s, it’s amazing how technology works.
Sherif Aboutouk 1:18:19
Nowadays, and I’m hoping one day, I mean, no ideas in my eyes, as you know, a five I see my ICS but that grain that translates the message doesn’t really picture whatever is happening on the right side. And I think the Stephen Hawking example, it’s quite an interesting one. I sometimes Secretly, I don’t know if you’ve ever done that. Think about what sort of disability it was I wanted to have, instead of what you’ve got.
Bill Gasiamis 1:18:56
You’re an interesting guy, you tell me.
Sherif Aboutouk 1:18:58
I’ve definitely done that. I’ve told you that. I mean, like, you know what, I would have much rather be in a wheelchair than not see with my eye. A number of reasons for it. It’s because you can stimulate the muscles. I’ve seen many people that were not able to walk after you know your example of this as well that you know, and I’ve never seen someone or heard that someone got the vision back.
Sherif Aboutouk 1:19:28
Now, there is there’s a neurologist and then there’s a neuro-ophthalmologist. So there are very few of them. And they normally work privately. There’s one person Professor left that works and then he just refuses to do everything. privately. I had a really interesting chat with him a year after the stroke.
Sherif Aboutouk 1:19:50
And he can articulate in a very good way. He said vision is sometimes to be argued as an illusion. What is vision why Do you need your vision, your vision isn’t coming back. But the function, or what you need your vision for is going to improve. And they gave you give me an example is like you play tennis.
Sherif Aboutouk 1:20:12
Compare yourself to when you first-time play tennis after your vision loss from missing every single ball to now, nothing has changed physically but the adaptation of your body, he said that you move your eyes a number of times a second, you don’t realize that. So what you start getting good at is your eye movement.
Sherif Aboutouk 1:20:34
And another reason why I think sometimes this kind of leads to the emotional bit. No one knows I have a stroke. No one can tell I have a stroke. And I think some people are shy in a way of asking how it is and how you are. And I totally understand if you’re born with a disability, you just don’t want to mention it every time.
Sherif Aboutouk 1:20:55
But if someone was born, abled, and that became a disability, it’s actually when people asked me, How is it I find it personally, very comforting to talk about it. Because I’m living in this world. I live and work full-time. And you know, I’m you know, just living my life and don’t talk about it in my head every single day.
Sherif Aboutouk 1:21:17
And I think sometimes having a visible disability, you get this conversation going. But when you don’t you never talk about it, you see what I mean? You just you know, Oh, I’m glad you You’re great. Oh, no, not great. Fucking, I can’t see I have long-term fatigue. Short-term memory, I get numbness every time I sleep.
Sherif Aboutouk 1:21:43
A lot of things happen to people internally. And I think people always focus on the external part. And I think, you know, it’s, you know, how, what you go through. So, you know, I’m hoping that my function gets better.
Sherif Aboutouk 1:22:01
My brother always says, I don’t think Elon Musk has this new neurologist company that is basically going to inject sorts and kind of stem cells, whatever it is, and make you kind of, if you have any disability related to the brain, it’s fixed. And, you know, fingers crossed, let’s see how it turns out to be you know.
Ischemic stroke is an invisible disability
Bill Gasiamis 1:22:22
I like that distinction that you made about, if your disability is not visible, you actually miss out on a lot of the opportunity to talk about it, and therefore help heal. That’s something that I’d missed for a while. And that might explain why I have a podcast because I needed to talk about it.
Bill Gasiamis 1:22:45
But nobody knew that I needed to talk about it, because it didn’t look like I had anything wrong with me. And the podcast is exactly that. Exactly what that is, it’s making up for the fact that in public, or in private life, or wherever, people don’t know what I need to talk about. And they’re not equipped to hear me talk about it anyway. So the opportunity to talk about it was not there. And I needed to find a way and I think that’s what the podcast is.
Sherif Aboutouk 1:23:19
Yeah. And also it can it can fire out that other way because you only want to talk to someone who’s actually interested in talking about it. So you’re not going to bring it up if he hasn’t brought it up.
Sherif Aboutouk 1:23:30
So it’s kind of the, you know, sort of, and you know, people become a bit polite and want to ask about it and stuff. And you know, I think it’s a personal preference, I myself find it. Very therapeutic to talk about it. Because if I don’t talk about it, you just close it in a black box that’s going to explode at some point. And I don’t want that. So I think it’s important to talk about it.
Bill Gasiamis 1:23:54
You know, what’s interesting, some shark survivors have come on the podcast, they’ll say, you know, it’s been 10 years, and I’ve never spoken to anyone about it. And I’m why did you wait to come on my podcast for 10 years to speak about it? And they were like, Oh, I don’t know just got on with life and that type of thing.
Bill Gasiamis 1:24:10
And it was really interesting that some people don’t need to talk about it, like I do. They deal with it differently. And that’s cool. I mean, it’s properly cool and I was so excited that the first person they spoke to about it was me and the rest of the world. It’s like okay, you waited 10 years and you really talked about it you know how your mum and family manage it all? How do they deal with it and cope with it?
Sherif Aboutouk 1:24:40
My mom is my kind of hero really like she’s always been especially after the stroke. I spent 10 days in Majorca with my mom Aunt and my late uncle, and then I spent five, six weeks here in London with my mom. And it brought me very close to, and it just made me realize how, you know, kind and obviously, she’s always been but just kind of getting this, when you need it is very different than getting it when you don’t need it.
Sherif Aboutouk 1:27:08
You know, when mom says you gotta finish your play, eat this, you haven’t eaten Sharif La La live under the training, it’s just a chore for you. But when you’re actually seeking that sort of kindness, it just brought me a lot closer to my mom. My dad is in a slight denial mode. Like he doesn’t get it.
Sherif Aboutouk 1:27:08
He got Oh, you’re fine. Now it’s okay, you moved on. And I see where he’s coming from. But sometimes it could be slightly. You know, I just need the people close to me to know how hard I’m going through it, and how challenging it is. But, you know, it’s I’m very grateful to have them both.
Sherif Aboutouk 1:27:08
And to have that support from them that will support they continue to give me I’m very close to my brother as well. He lives in Dubai, and I speak to them almost every day. And I think it’s, again, bringing back the whole idea of investment. And, you know, one, I don’t know if you’ve ever seen it, so I don’t have tick tock, I have YouTube shorts, which is the same thing. It’s like 10 Seconds, and there’s this guy that goes up to people in the States, and be like, Oh, hey, I’m very sorry. I’m really hungry.
Sherif Aboutouk 1:27:08
And I do have a $1 spare dollar bill here and half $1. And then he blessed them with $1,000 and whatever. And what’s really interesting about this is that most people that give him the dollar are people that are actually in need of the dollar. And then you see other people that oh, sorry, man of God, you know, I’m getting these things to my stepsister’s birthday.
Sherif Aboutouk 1:27:13
So I don’t have $1. So are some of you I worked so hard to read? And I think I’m citing this, this example just shows you. Kindness comes from all over the world. And it comes from different people. But I think for me, the kindest soul I’ve had, after the stroke was my mom, she’s been very comforting for me. And I’m very blessed to have her.
Bill Gasiamis 1:27:32
I love what you said about that example because what that comes from is it comes from people who are in need and know what it’s like when somebody who is in need comes up to them. And then they go, Okay, I know, you need a buck, I’ve got a buck. No worries, I’m happy to hand it over.
Bill Gasiamis 1:27:49
Because it’s not about the money. It’s about just resolving the need for that person, whatever their need is at that moment, right? And your dad’s approach. I feel like people like that it’s more about them than it is about you. So he’s, he cannot imagine his son being unwell. He does not want to contemplate that.
Bill Gasiamis 1:28:11
He only wants to live in a world where his sons are perfectly healthy, and everyone’s well. So if he tells you enough, it’s real. It’s true, and maybe you’ll get well and you’ll be well and therefore his worst fears are not going to come true. You know, and it’s pretty cool. Like, it’s fair enough as well. You know, you totally get that.
Sherif Aboutouk 1:28:35
Yeah, I mean, I love my Dad to bits, it’s just, it’s a very different dynamic to what I have. My mom is also a dentist, she has like some way of understanding the medical profession and understands, been with me to all the doctors and so on. And it was actually quite interesting because when I came to Charing Cross Hospital, they put me in the stroke ward.
Sherif Aboutouk 1:29:00
And I was in room 4B right? So I was spending a couple of nights in this ward with four other people two of them that were just screaming all night because they’re trying to speak and they can’t speak. And one of them was like really, really in a bad state.
Sherif Aboutouk 1:29:16
But what I was doing is that I have these curtains I will do my little cave and I’ll just sit in my cave and kind of thing and then two days later they came and they said kind of I don’t understand. I think it was a bit of bullshit really your COVID test came back negative. So you can go to the other room.
Sherif Aboutouk 1:29:38
All right, cool. So get to the other room. And then I started kind of putting my bag and you know, the curtains and the nurse comes in and said oh, sorry, we have two critical cases here. So you cannot draw the curtains. I said all right, fine. So I sat there, the bed next to me there was a visitor that I heard on the phone.
Sherif Aboutouk 1:30:02
She was like, oh, so and so you know, he’s much better last night, he only had five seizures. And I listen, I heard this. And I just went to the nurse and I said, Hey, can I leave? She was like, Oh, you’re not in prison. You just need to self-discharge yourself. Yeah, sure, I’ll do that.
Sherif Aboutouk 1:30:19
So when I signed the self-discharge paper, my mum came and heard about it. And she started she’s, like, shouted at me, when she’s like, the nurse says, he’s 35 years old. She said I don’t care. For me. He’s a baby, he cannot leave the hospital. And then literally, I left on Wednesday, Thursday, and Friday, I still have it now I can feel my heart rate palpitations all over my body.
Sherif Aboutouk 1:30:51
So that was so severe. So I talked to my mom, I think I’m getting another stroke. And I took a cab and went to A and E, and they put me again, through the same stroke, and I went back and they go, oh, you should have listened to your mom there. I told you not to leave.
Sherif Aboutouk 1:31:06
So it just shows you how kind of parents no matter how old you are. They’re just gonna treat you as a child. And you know, it was very interesting. So bit of a funny story that because I went back and I felt so like, nurses, like oh, I told you not to leave, I was like, yeah I’m back.
Bill Gasiamis 1:31:24
And then you felt like you used to feel like when you were 5,15, 25, every time that your mum pulled rank on you and put you in line, you felt the same thing. And you should have listened exactly. I get it, I get it, it doesn’t change, you’re always going to be your mom’s baby. And it’s not going to change age is not relevant in that in that equation, in that situation.
The lessons Sherif Aboutouk learned from stroke
Bill Gasiamis 1:31:52
I realize that we’ve been talking for about an hour and a half, and you’re in a time zone, which means that it’s definitely after midnight there. So we should get to wrapping this up. But before we do, I’ve got a couple of questions I want to ask you. And maybe we’ve already alluded to it. But I’m wondering if you could shed some light on what stroke has taught you.
Sherif Aboutouk 1:32:19
Life is short, and builds relationships. Look after your body because it’s the machine. These are the three things that I can now talk about. And we are gifted with many things that you don’t really appreciate it being grateful for until they’re taken away.
Sherif Aboutouk 1:32:46
And then a smaller example if you use a nail clipper and you over your cut your nails, you nail yourself like in so much agony, and like you’re in a bad mood La La La imagined people that don’t even have a leg, you know what I mean? Like, I think it just becomes makes you so grateful for what you’ve got.
Sherif Aboutouk 1:33:09
And because you’re always going to die, you are going to die. And I think, you know, living with a disability sometimes is worse than dying. Because when you die, you die, right? It’s worse for your family and the close ones that you don’t want to go through when you die. Right. That’s it. So I think, you know, people go, Oh, you could have died. I mean, it could have been it would have been here.
Sherif Aboutouk 1:33:31
So I wouldn’t have felt it. But I think it’s it’s, it’s Yeah if I summarize, it builds relationships, be aware of your health and your body. And now I’ve got one, but relationship be aware of yourself, you really be grateful for what you have and be grateful for what you’ve got exactly, whatever, small or big. And we’re all kind of motivated by a lot of things out there.
Sherif Aboutouk 1:34:02
And the media and you know if you know, I can’t remember the statistics, but if you know if you’ve got a roof over your head, and you know you can afford your dinner, you’re one of the top X percentage of the world.
Sherif Aboutouk 1:34:15
I think we live in a world where we think everyone’s you know, need to have Ferraris and have massive cars and bla bla bla and I think you kind of miss the little things that actually matter in life. You know, you get people that are super rich, and they would do anything to get their health back would do anything to kind of get their parents or their children back have lost and so be grateful to what you got.
Bill Gasiamis 1:34:40
I love it. And this is a question that seems similar, but it’s actually very different. What do you want to tell other stroke survivors that might be going through something similar to what you’re going through right now?
Sherif Aboutouk 1:34:58
It’s a journey that never ends. And if you had a stroke, and you don’t have a disability, be very grateful for it and look after your health and, you know, kind of, you know, if you had a disability and you kind of really upset about it like I am, think about what you what did you need that that part of that became disabled for and you will adapt whatever this is.
Sherif Aboutouk 1:35:38
If you need your legs to walk around, you can be on a chair, and walk around like, try and strip it back to the function of the kind of thing that you use. So, you know, if I lost half of my vision, then I need to work on moving my eyes more to adapt for it, don’t chase getting the vision back, especially I’m talking about vision swap got, don’t chase that, get it back, but what you’re gonna get is the function, what you’re going to use your vision for.
Sherif Aboutouk 1:36:14
I think the psychological and the mental part is just, I don’t think I’m in its place now that I can comfortably give five other people because I’m still going through the journey. But I think listening to other people’s stories on your podcast, or whatever kind of another platform they might be interested in, is the best way to get it at least to have been to at least some of the best six or seven best neurologists in the UK.
Sherif Aboutouk 1:36:48
Private on NHS, do the same thing. And they tell you the same thing. There’s a protocol for exactly what they do, but no one has had a stroke. So no one can explain to you what’s going to happen. So be optimistic, don’t give up because it’s not going to help anyone.
Sherif Aboutouk 1:37:06
And I just understand, you know, people, it’s quite interesting when people kind of with cancer survivors of stroke survivors, and people look at them and tell them all you’ve been so strong, is not strong, is there’s nothing else you can do, what is he going to do? Sit at home and cry, he’s actually not strong at all.
Sherif Aboutouk 1:37:25
You know, it’s really kind of you to call me strong. But I mean, I have two options here. Either to dwell on the past and blame la la land, just play the victim part, or to just deal with it, and try and, you know, get over it, adapt, and you’ll get there. Again, I’m still on the journey, I’m hoping one day, I’ll get there.
Bill Gasiamis 1:37:50
I love that. You’re not strong, you’re just getting on with life. And that appears a strength. And that is a strength. It definitely is. But it’s not what you’re going after. It’s you’re not attempting to be strong. You’re just getting on with life. And that is a strength in your character, in your approach to life in how you want to live your life, and they’re very different things, try to be strong, seems like a burden seems like it’s hard.
Bill Gasiamis 1:38:24
You know, I’m going to be strong, I’m going to tough it out. That’s a very different type of approach to going about life and continuing life. And just getting through whatever you’ve been through.
Bill Gasiamis 1:38:41
And being prepared to overcome all the challenges and the barriers and the obstacles that come in your way, you just got to continue moving on with life and that strength. But it’s such a different version of it. It’s not. It’s not the one where you tense up and push through. It’s the one where you flow through. And that’s a really lovely strength mate.
Sherif Aboutouk 1:39:04
And if you want to give an example to this, it’s like if life is a chip that you playing blackjack, you’ve got one chip, and that’s life only got life once and you get served. So bad cards, you’re not going to fall die.
Sherif Aboutouk 1:39:20
You’re going to bluff as much as you can to win or whatever you got to do. Like, you know it’s your life. It’s one so you know, I think it’s evil played bad cars deal with it deal with the cars you’ve got now and not try to ask for the dealer to send you this other set of cars because he’s not.
Bill Gasiamis 1:39:40
I love it. And on that note, mate. Thank you for being on the podcast.
Sherif Aboutouk 1:39:44
Thanks a lot and continue the great work you’re doing Bill it’s definitely helping me and I’m you know I’m sure it’s helping other people as well. Very, very happy to be on your podcast. mate thanks.
Bill Gasiamis 1:39:55
Thanks for joining us on today’s episode to learn more about my guests include Including their links to their social media and other pages, and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:40:10
If you’d like to try the course five foods to Avoid after Stroke, go to recoveryafterstroke.com/courses and get on board now. If you would like to support this podcast, the best way to do is to leave a five-star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:40:28
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Bill Gasiamis 1:40:58
Come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do is be a stroke survivor or care for someone who is a stroke survivor. Go to recoveryafterstroke.com/contact fill out the contact form and as soon as I receive your request. I will respond with more details on how you can choose a time over Zoom that works for you and me to meet. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:41:31
Importantly, we present many podcasts 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 1:41:49
All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:42:05
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 1:42:26
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Intro 1:42:43
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Intro 1:43:03
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The post Ischaemic Stroke Recovery – Sherif Aboutouk appeared first on Recovery After Stroke.
1 hr 44 min
May 29, 2023 Ischemic Stroke And Aphasia – David Sweet
Ischemic Stroke and Aphasia are what David Sweet has to overcome after becoming unwell while at lunch with his work colleagues at the age of 50.
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Highlights:
00:59 Having an Ischemic stroke at work
07:07 Stress at work might have caused the stroke
13:38 The best decision
24:22 Dealing with Ischemic stroke and Aphasia deficits
30:12 Ischemic Stroke and Aphasia
43:13 Leading up to the open heart surgery
53:37 A link between a stroke and depression?
1:00:15 David talks about the Recovery After Stroke podcast and how it’s helped him.
1:20:41 The benefits of cold showers and plunges
Transcript:
David Sweet 0:00
It was one of the best decisions of my life to have lunch with my colleagues that day. I mean, because on a normal day when eating lunch by myself in my office, I don’t know how many hours would have gone by before a colleague would’ve said, hey, something’s wrong.
David Sweet 0:15
But that’s very fortunate because I got care immediately. And you know, I had to go to two hospitals before they could remove that blood clot from my brain. As a result of that. I don’t have many physical symptoms like many of your guests have.
Intro 0:35
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.
Bill Gasiamis 0:48
David Sweet, welcome to the podcast.
David Sweet 0:52
Thank you, Bill. Honored to be here.
Bill Gasiamis 0:54
It’s my pleasure to have you here. Tell me a little bit about what happened to you.
David Sweet had an Ischemic stroke at work

David Sweet 0:59
Yeah, so the reason I’m here is because of what happened on April 21, 2017. Yeah, so I was at work that day, it was a stressful period of my life, let’s say at work. And for some reason, that day, I decided to have lunch with my colleagues.
David Sweet 1:21
And most of the days, I always get a sandwich from downstairs and eat at my desk. But on that day, I made this decision to go have lunch with my colleagues in a work cafeteria, and end up being one of the best decisions of my life.
David Sweet 1:41
So after lunch, we went to the cafe or the coffee corner, I guess you say in English. And after the coffee, we gathered up everyone’s cups. And then I noticed that I was limping. When I was walking to the trashcan, I thought, this is kind of weird.
David Sweet 2:08
But then I went back to my colleagues. And then we started walking back to the building we work in and I was thinking to myself, first I don’t have time to go to a doctor now about this limping problem, and I felt that my limping had gone away.
David Sweet 2:30
But then about 75 yards or meters later, my colleague, Jonathan stopped me. He put his hand on my shoulder. And at that point, I knew something was wrong. And then I blacked out. And then for the rest of the day, I was kind of coming in and out of consciousness. Yeah, so then I ended up having a stroke that day.
Bill Gasiamis 2:57
So you ended up in the hospital and you’re in and out of consciousness while you’re at the hospital?
David Sweet 3:03
Yeah, so first in and out of consciousness when I was still at work, and I remember at work, one of the points was unconscious to say, having the realization or dream or something like that my right side was paralyzed and I remember feeling very sad and very angry about this.
David Sweet 3:26
I’m thinking what the hell, you know, because I wouldn’t be able to play with my children anymore. It’s just not fair. But then I woke up and then the thought went away. And then I had an ambulance ride to a hospital called Andrei Mineo in the town. And there they gave me anticoagulant but then it didn’t work.
David Sweet 4:00
So then they had to go for another ambulance ride to another hospital in town and then the doctors did a thrombectomy. And this is an invasive procedure, where they slice a hole in my vein, in my thigh, and then they sneaked up a, I guess, a tube up there, and right into my brain.
David Sweet 4:38
And then they found out where the blood clot was and pulled it out. But then, I was of course unconscious when they were doing that. So then I woke up that evening in the hospital. At that point, I felt very calm, and then I was surprised that my sister-in-law came to visit me.
David Sweet 5:05
And I was like, wow, it’s good to see you. But one of them says, Hey, David, don’t speak. So I didn’t speak because I was very, very tired at this point. And, yeah, then my wife showed up sometime later. And she repeated herself over and over. Hey, David, I love you. I love you. I love you.
David Sweet 5:30
And I was thinking this is kind of weird. I mean, of course, I love you. And I hear what you’re saying. But I think she also said, you don’t speak. So I didn’t speak. But anyway, I was very tired. So I didn’t feel like speaking.
David Sweet 5:49
Yeah, so then at that hospital, I imagined the nurse told me that I had a stroke, but then a stroke in France is an obvious save. So they probably mentioned David Sweet you hadn’t, have I have no idea why is. You know, this is I live in France, where I know, I speak in my daily life. But here are certain subjects where I don’t have the mastery of the vocabulary.
David Sweet 6:25
For example, medicine, or say, when I go car shop, amas stuck there, because I don’t know what the clutch is. And I cannot explain what’s wrong with my car. But anyway, so some people told me, obviously, but I had no clue what that was.
David Sweet 6:44
So then I had to go back to the hospital, and there I was for a few more days, and the doctors and nurses told me, still not sure what this was. Then finally, my wife told me, Hey, David, you had a stroke.
Stress at work might have caused the Ischemic Stroke and Aphasia
David Sweet 7:07
And I was very surprised by that because I was thinking thirsty weird. After all, first I’m very fit, you know, I run several times per week, I have low blood pressure, I don’t smoke, I drink moderately, so I’m thinking must be stressed, because,se at this point, it was quite stressful at my work.
David Sweet 7:35
We’re in the middle of implementation some new accounting guidance, as we had to analyze many things or ways of doing business at work. So there’s a lot of that. And then I had this normal, normal normal management issues.
David Sweet 7:59
I was then as the manager of Europe, Middle East and, Africa teams, responsible for revenue recognition, at my work and so I just had that kind of issue as well. But then, at least in France, and maybe elsewhere, I don’t know how it was for you.
David Sweet 8:26
Here in France, following a stroke, they’ll do certain tests to try to determine why you had a stroke, for example, they’ll do an ultrasound on my neck to see if it comes from the thyroid, I believe. And then one of the tests was I had to swallow a hose, let’s say a big kind of tube with a microphone in it.
David Sweet 8:56
They listened to my heart, and then following that exam, the doctor said, you have a leak in your mutual valve in your heart. And even though I was surprised about it, because I went to a cardiologist four examinations, but none of the cardiologists determined that I had that leak.
David Sweet 9:28
And then he mentioned that this was a likely cause of my stroke. And then a year later, yeah, I had to leak repaired. So I had open heart surgery where they stop your heart for about 40 minutes. Go in there and repair the valve.
Bill Gasiamis 9:52
Wow. What a journey man. That’s a pretty big deal. You’ve gone through a heck of a lot in a short amount of time, and more than most people go through in a lifetime. And that’s what’s interesting about this whole process, there are so many ways to get to the point of a stroke.
Bill Gasiamis 10:15
And a lot of the underlying causes often then need attending to as well. And then it’s a whole journey of getting through both the stroke, and then the heart surgery, and then the stroke recovery, then the heart recovery.
Bill Gasiamis 10:32
What I’m curious about, and then we’re going to talk about all those things that you had to go through. But what I’m curious about is, on the way you on the floor, in the cafeteria, when you were thinking the things that you were thinking about, Oh my gosh, I can’t feel my left side.
Bill Gasiamis 10:48
Oh, my gosh, I’m not going to be able to be active with my family. Was and? And was that the? Were you that aware? And that the first thing that came into your mind that it’s gonna mean all these things in the future?
David Sweet 11:07
Yeah, so I don’t know why I had that. Sinking, because upon exam, I didn’t know how to stroke reading. It was just a thought that came to my mind, you know, and at first, I didn’t know if that was a dream or there. I know if you have dreams when you’re unconscious or not.
David Sweet 11:33
I know when your recent guest, you know, he was in a coma. And he? Yeah, he then made things go into his mind. But there was no, so at that point, I was walking between the buildings and my work, I worked for a large software company in France, and many, many buildings.
David Sweet 11:58
And, then, yeah, my colleague, he put his hand on my shoulder, and then I, sometimes I lay down, and, and he had some experience with strokes before or stroke patients before. So he knew that it the better for me to lie down as opposed to standing up. And then talking to my colleagues later, I want my return to work.
David Sweet 12:29
They mentioned that. Then, my speech was jumbled when I tried speaking, but I remember speaking, that’s what they told me. And then, um, yeah, I work in a big campus in France, about 4000 people, where we have a medical facility at work.
David Sweet 12:52
And so when the colleagues ran off to get a wheelchair, and the real meat to the doctor’s office at work, as to dinner, I woke up one time that woke up from a stroke, I see America being on the table and into a doctor’s office, and it was doctors, they’re standing around me.
David Sweet 13:14
And then the ambulance people came and then they had to go into the stash stretcher, then go to the ambulance.
Bill Gasiamis 13:21
Right. So you had a pretty rapid onset, and then you had care pretty quickly as well. You were cared for you managed to get there really rapidly and then transfer you immediately to the care of the paramedics.
One of the best decisions David Sweet ever made

David Sweet 13:38
Right. Yeah. So this is what I mentioned. You know, it was one of the best decisions of my life to have lunch with my colleagues that day. I mean, because on a normal day whereas eat lunch by myself at my office.
David Sweet 13:51
I don’t know how many hours would have gone by before a colleague would’ve said, hey, something’s wrong. And that’s very fortunate because I got to care immediately. And, you know, I had to go to two hospitals before they, you can remove that blood clot from my brain. As a result of that, I don’t have any physical symptoms like many of your guests have.
Intro 14:24
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. How long will it take to recover? Will I recover? What things should I avoid?
Intro 14:39
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. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 14:54
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 15:08
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, but they’ll help you take a more active role in your recovery, add to the website now, recoveryafterstroke.com and download the guide, it’s free.
David Sweet 15:27
And you have more physical symptoms than I have. You know, there’s my stroke was on the left side of my brain. And that gave me aphasia. And I’m still struggling with that a bit, as you’re probably hearing.
David Sweet 15:46
But you know, after two days in the hospital, the three kinds of work with this stroke patients, she asked me to just stand up, and then try walking a little bit. And so I walked by, she was holding my arm. And then, I was limping.
David Sweet 16:09
And she said, Okay, now you can walk so you can walk by yourself now. And so at that point, I was walking around the floor, and then limping which also affected my writing. So it’s still even today, six years later, holding a pencil, pen, or pencil and writing is more difficult than it was before.
David Sweet 16:34
I’ve had to now make sure the pen is in my hand correctly and, and write correctly. But yeah, unfortunately, fortunately, I got the care right away.
David Sweet 16:47
And I understand like, they say, I heard that you begin to care within four hours, that’s key. That way that not have so many physical symptoms, find a stroke, and I did get the care within four hours, fortunately,
Bill Gasiamis 17:05
yeah, within four hours, they can administer TPA, usually when there’s a blood clot when a stroke is ischemic, and then they’ll that’ll prevent a lot of the damage to the brain. And then it’ll support the healing of the brain a lot quicker.
Bill Gasiamis 17:25
But then some areas have been damaged and impacted. And most people do have to rehabilitate from something.
Bill Gasiamis 17:32
But I have interviewed a few stroke survivors who have had a stroke and had TPA, literally within an hour, and then look completely, perfectly normal, but then they do suffer from fatigue and other symptoms that are associated with stroke, but because it was so rapid onset, and then they got treatment so quickly, there’s a bit of a disconnect in their understanding of how serious it was that they kind of feel like, Oh, well, I had this thing.
Bill Gasiamis 18:05
And then I went and got this thing. And then I was gone, and it was alive. And now I’m dealing with the aftermath of it. And I didn’t realize that it was going to be such a long journey. And I was going to be on such a path, and I was going to be struggling with different things.
Bill Gasiamis 18:19
Because every other aspect of them appears to be fine. But once the brain has been tampered with, in some way, shape, or form, that tends to be a bit of a bumpy ride to to recovery. Now, that being said, How long did you spend in the hospital for the first but to deal with the stroke and all the things that you had to overcome to get home?
David Sweet 18:48
Yeah, so as in that hospital for 11 days, the first hospital, and then so in France of these, when you’re in the hospital, you can go home for the weekend. If you’re not in intensive care.
David Sweet 19:05
Before I went home, we could end and the reason is because the medical staff in the hospital they’re also home for the weekend except for the doctors and so forth who were working in the emergency ward and I intentionally said.
David Sweet 19:23
So when at home that weekend then, you know, so my father, he came over from the United States to France, follow him he didn’t learn that I had my stroke. And I was quite excited about that.
David Sweet 19:39
You know how my father is here in France and and that weekend, I decided to have a barbecue barbecue is something my father likes and something I like doing as well. And, and I decided to make barbecue and hamburgers. And so I got to a hamburger And then also made buttons.
David Sweet 20:03
And the reason is because the buns that you buy in the store, here in France are not very good. So I make the buns. But then I realized, oh my god, it’s so difficult to understand the text in the recipe and then follow the text. And, so I mean, for sure I made some mistakes, but Okay, the buns turned out more or less. Okay.
Bill Gasiamis 20:25
So, what period after the stroke was that?
David Sweet 20:32
Just 11 days. Yeah, and I know, I know, it’s for you. So it’s so soon.
Bill Gasiamis 20:45
It’s so soon, I’m thinking what I would prefer David to have been doing on the 11th day was lying down and somebody was making the food for him. Was what I would have preferred that they brought the hamburger to you, instead of making every bit of the ingredients and then delivering a bunch of hamburgers to them, but I understand what it meant to you to have him there. So I get it.
David Sweet 21:07
Yeah. But you know, it’s part of my nature. I love doing stuff. You know, like, when I’m a gardener, I love working in the garden. I’ve always been active, you know, and I like doing that, you know, and it’s part of me. And so. So yeah, home, making food, you know?
Bill Gasiamis 21:31
There’s the enjoyment part of that. How difficult was it? Did it bother you that you realized that you couldn’t particularly understand and read the recipe? How did you respond to becoming aware of that?
David Sweet 21:45
Oh, yeah. At that point. Okay, at that point, I felt, okay, this is, this is where it’s difficult to understand each recipe. But at that point, I was still convinced that I’d get better really quickly, you know, just like, some days.
David Sweet 22:09
And, you know, just following my stroke, you know, I think yeah, okay, I’ll take a month off of work month such then, I think in a month is a long time. And I think, okay, I rest, and I’ll be back at work, and I’ll be everything we had it was before.
David Sweet 22:27
But then I realized it was a stroke in such a long project process. And, even today, you know, six years later, I, I view myself now, compared to where I was a year ago, and as I differences are still improving my speech and my thinking and speaking at the same time, and so forth. That’s the beauty of it. But yeah, the recovery
Bill Gasiamis 22:56
continues, it continues forever. And it’s ongoing. And if you’re focusing on it, and you’re practicing, and you’re noticing your wins, there will be wins there. And it’s just some people will have a different path to recovery. But, I’m noticing, I noticed all the times when things are better and different, I feel okay.
Bill Gasiamis 23:18
Or I have more days where I feel like I have fewer days where I don’t feel okay, more days where I don’t notice my deficits, fewer days where I am noticing them, you know, so it continues, it becomes for me, it’s become a lifestyle that I live that supports recovery.
Bill Gasiamis 23:34
So the whole lifestyle is about supporting recovery. And I would consider myself very recovered, even though I have these ongoing deficits on my left side. If people ask me, I’m like, Yeah, I’m recovered. Don’t worry about it, I’m over it, I’m past it.
Bill Gasiamis 23:53
Because I don’t think that I don’t think that the stroke is doing my issues or being I think kind of that part of it has resolved and whatever it left me with is separate from being unhealthy or unwell. So I feel healthy. Although I’m leaving with this feeling in my left side and the deficits that I experienced I don’t feel unhealthy because of it. Does that make sense? I’ve got
Dealing with ischemic stroke and aphasia
David Sweet 24:24
Yeah, it makes sense to me. But um, yeah, I understand what you’re going through and in a way Yeah, it’s like that for me, because you know, I still wake up and I feel like my light right leg is almost cramping up in my sleep, you know, several times per week and I contact you back that that before. It’s still to this day, several times per week and that this is now it’s it’s part of my life now. And
Bill Gasiamis 25:04
yeah, and it’s part of your life and it’s not impacting you in a way where you feel like you’re unwell because of it, you’re just, this is the thing that I have to manage. What’s interesting about your leg getting stiff when you sleep, I experienced the same thing.
Bill Gasiamis 25:23
So some mornings, I wake up with a cramp, and it’s excruciating. And it’s just my left leg. And right happens after I stretch it. So you know, have you had the morning stretch after you wake up? If I do that, and I don’t forget, and I don’t remember, then my leg is going to seize up. And I’ll put myself into,
David Sweet 25:46
right, okay, yeah, that’s different than mine, because mine is when I’m still in bed. Just before waking up, you’re ready to put a timeout? Wait, wake up, you know, that’s when they will. Almost cramp. And Mike, my case is more when I’m not thinking about this. Well, that happens.
David Sweet 26:06
It happens more when I am dehydrated. dehydrated. So maybe that is a sign that I didn’t drink enough the day before. And so that’s when my late cramps up. That’s interesting that yours is different, is I thought it was I thought were you with caffeine at the same time. Exercises.
Bill Gasiamis 26:35
Yeah, I kind of make a cramp-up. It’s weird. I don’t know how I do that. And sometimes, it’s too late after I’ve realized it’s too late. I’ve been a cramp. And then I’m trying to settle it down, and it won’t settle down. And I haven’t gotten out of bed yet. But it is in bed that it happens more than anywhere else.
Bill Gasiamis 26:52
And dehydration is important. I mean, it’s going to make you feel fatigued. It’s going to make your brain operate less optimally anyway. But then it has an impact on muscle cramps.
Bill Gasiamis 27:05
And I know Yeah, people with deficits on one side or the other, that often report muscle cramps and pain and stiffness and all the things that we associated with, you know, with deficits because of a stroke. So you’re so you’re you’re living in France, how long were you in France? Or this happened?
David Sweet 27:31
Right. So actually in France before it’s happened. It’s 19 years. So I moved to France in 1998. Then, I was well from California, and it’s working in California. At the point when when I moved over, and I was working for a software company called Netscape is remember that that software company was the first software company that made Internet browsers.
David Sweet 28:03
Before Netscape came along, the Internet was kind of an academic thing that existed, but there was no easy way to access the Internet. And then Netscape came along and opened that internet up, opening the Internet to people everywhere in the world.
David Sweet 28:26
But I told my management, yes, I’d like to work overseas and eventually had the opportunity for me to come to Paris. Because Paris was a European headquarters. And at that point, I didn’t speak French at all, I can say this. Thank you. Merci. Er. Hello, bonjour. But that’s, that’s it.
David Sweet 28:51
Then Fortunately, for me, or maybe, unfortunately, it depends on how you look at it. The language spoken in the office with English, so then made it more difficult to learn French, because it involved speaking English all day, Reading, English documents, and things like that.
David Sweet 29:11
But I still want to learn French. So I studied on my own hanging out with French people, like on the weekends. And then you gradually or the time I learned French.
Bill Gasiamis 29:26
So not too bad. The French people. We’ve had some time in France. I enjoyed my time there. But I didn’t notice how difficult it is to communicate in French. And to try and have the correct accent and pronunciation of the words.
Bill Gasiamis 29:44
It seems to be very difficult to pretend like you’re, you’re talking French in that. If I was using Google Translate, for example, and I had a sentence that said, can you tell me how to get to the train station? Yeah, getting reading that in the French way. And then yeah, saying it out loud means nothing. It comes. Yeah. Strange.
David Sweet 30:10
So yeah, actually,
Ischemic Stroke and aphasia
Bill Gasiamis 30:12
I’m curious about your challenge with your aphasia. When you were in the process of recovering, and you were interacting with people in French, and people in English, what was that? Like? Did you notice aphasia was causing challenges for both languages? How was that working?
David Sweet 30:35
Yeah. Yeah, that’s a good, very good topic to talk about. Because for sure, it’s more difficult in French. Okay.
David Sweet 30:47
Follow my stroke, okay, it kind of went, my recovery went in waves, you know, right away, just, my wife came to visit me, but it’s still not a first hospital, I could only speak one-syllable words, you know, in English, you know, and not, I couldn’t speak French, basically, at all, you know, and then two syllable words, and that over time, the English came back, where I can speak fairly fluently.
David Sweet 31:15
So long as I wasn’t stressed, or something of that sort of, as long as I was relaxed, I could speak English quite well. But for the French, it was a difficult, different story. And, I’d be curious to hear what if you have other guests of yours, or people listening to this podcast, you are having an English mother town, and they had a stroke.
David Sweet 31:41
Living in a country where English isn’t a spoken language, I wonder if my experience is the same as theirs. So it was very much more difficult to speak French, in this case. And I could understand everything that the tummy.
David Sweet 31:59
So as long as I knew that vocab before, I mean, I didn’t understand that. But that was the specific topic that I didn’t have the vocabulary for. But just on everyday things, it was very difficult. And so and so for example, in a hospital, is it difficult, to get a point, get myself get my point across to the doctors and the staff there?
David Sweet 32:34
Also, going into the store, there’s a difficult as well, like, you know, I remember one time, I had to go to the hardware store, and I need to get some special type of washer, you know, and you’re screwing and you have a washer between the screws.
David Sweet 32:51
And so I I practiced that before I went through this asked to make sure I could pronounce what I needed to say. And then of course, they say something like they asked me some questions today where I don’t I need to need to talk more and describe more and more detail.
David Sweet 33:14
And then at the toll messes me up. So then I don’t know what it did. Anyway, they finally got your plan.
Bill Gasiamis 33:26
I’m gonna say this, they are going to say that and I’m gonna get a washer. And then Exactly, yeah. You said this. And then they said something else. And that was? How do you plan? So you hadn’t yet for that part of it?
David Sweet 33:38
Exactly. Yeah, exactly. And so that, so that’s more difficult. And then, actually, it was quite loose, lonely for a time, you know. You had in hospitals find my stroke. And, and then not be able to speak.
David Sweet 34:04
And that’s why I’m curious to hear from some of your guests, you know if the year is English speakers, and had a stroke in a country where you just didn’t have the spoken language, and at aphasia. How did you deal with that? And
Bill Gasiamis 34:21
yeah, wow, that was difficult. I had a friend of mine who had a stroke, I think when they were in Vietnam with a family, okay, on a holiday, and they were from Australia. So when they were in Vietnam, and I was trying to deal with the hospital system, it was a mess.
Bill Gasiamis 34:37
I mean, they couldn’t deal with them because they didn’t have any form of being able to communicate and try and get the message across about what was wrong, and when they were treating him they weren’t able to communicate back and explain to him what they’re treating him for and what the issues were.
Bill Gasiamis 34:53
So it was a real challenging time, amongst other challenges that they had to deal with, which is like how do you cope With all the stuff of stroke when you’re in a foreign country, how do you also try and get to communicate that and it was unsettling for them?
Bill Gasiamis 35:09
It was difficult for them to feel like they were going to be cared for. Because they didn’t understand the hospital system. And they’re not, it wasn’t the type of system that they were used to from back at home. So there was a whole bunch of issues around that.
Bill Gasiamis 35:24
And then, yeah, somehow they ended up getting back to Australia can’t remember the interview was quite a while ago, but it was one of the most, it remains, in my mind, for them has been one of the most traumatizing parts of the whole experience was being in a foreign country and trying to deal with. Yeah, non-English speaking people.
David Sweet 35:47
Right? Yeah. In Vietnam, I mean, I’m happy to hear that your guests got the care that was needed. So I guess their strokes are quite common, I guess, in Vietnam as they are everywhere. Medical staff knows how to care for them.
Bill Gasiamis 36:11
No doubt about it, they’d know, they’d be equipped to deal with it. And they would know how to deal with it. And they would be helping a lot of people and they’re saving lives. The but they’ve hardly ever dealt with nausea, that’s coming, you know, stroke or whatever.
Bill Gasiamis 36:27
And then it adds further complication. But they managed to, they managed to get through it. But then, of course, at the same time, nobody knows how much that impacted his deficits and how much. I mean, you can speculate about all those things, really, about what a difference it might have made.
Bill Gasiamis 36:49
But he was overseas. And that was the way that it was and they had to get the best. They had to do the best they could and all things considered. They did all right. You know, they, they got to deal with. They got to deal with it and got him help. And then eventually, he was sent back home, and repatriated home.
Bill Gasiamis 37:09
I think, when he left for Australia, I don’t think he was in a very good state. I think it was quite unwell. Oh, yeah. He’s still really unwell. Right, and then finally got back to Australia, where he got where he was, I think admitted to an Australian hospital. And then they took they took, they took over from there.
Bill Gasiamis 37:31
But I can’t imagine what it’s like. That’s why I was curious about the French situation. I remember how difficult it was for me when I was in France, trying to just communicate about the train station and those types, right? Yeah, I speak Greek. So I’m pretty fluent in Greek. And I know how I know how simple it is for me to go to Greece and interact with people over there. Because it’s no, no big deal.
Bill Gasiamis 37:58
But and, and it’s fun to go to a foreign country because I wasn’t born there. My parents are Greek. And I learned Greek because of them. And it’s so fun to go to a foreign country and learn about them and live with them and get to experience them.
Bill Gasiamis 38:14
And also being able to communicate, takes the experience to the next level. And then when you go to France. Yeah, I don’t understand anything. It’s so hard. And when you’re having a stroke, it’s even harder. But it’s good. It’s I’m glad that you were there for quite several years before then and then re-enlist somehow embedded in the
Bill Gasiamis 38:38
in the system and you understood how things worked. And you were at least able to Yeah, okay, your needs perhaps. And Rebecca, what about your wife? And your kids? Were they French speakers or?
David Sweet 38:51
Yeah, exactly. So my wife is French. I met her in 2000. We got married in 2001. And our children in 2003, and two and five, they’re dual, French and American, but didn’t France our whole time that they’ve been alive. We got to the United States for visits and they stayed in France.
David Sweet 39:15
I speak English at home so my kids can learn English and my daughter responds to me in English, with no accents at all. My son who is now on my team, still responds to me in French, because he knows he knows I understand French. And he speaks with a bit of a French accent.
David Sweet 39:39
Different way when it’s in a hospital, it was for sure good that my wife was French. And so she could talk to the doctors and understand the system more than I understood the system. You know, even though I lived in France before I hadn’t medical issues before.
David Sweet 40:04
There are some things I never dealt with before. For example, the French Social Security, also my insurance for work. Getting money from that, you know, because I never I Okay, this is some found I have a signed a contract when I joined the company, but I think it just never happens to me, you know?
David Sweet 40:28
And so my wife is dealing with those kinds of things following my stroke. And as that for sure that was good. I was gonna say, yeah,
Bill Gasiamis 40:47
yeah, that’s all right. So she supported? Of course, yeah. Another Yeah. Another good thing to come out of it. I mean, yeah. What’s, what’s interesting is that you’ve been in France for such a long time.
Bill Gasiamis 41:00
And that’s why I asked, and you still, even though you had been there for such a while, navigating the system is a difficult thing to do. How old were you when you went to France?
David Sweet 41:14
So when I went to France, I was 31 years old, yeah, 31 years old. And then I was 50 years old when I had the stroke. And, you know, even though I had learned the language, in between times, still working at companies where English is the official spoken language.
David Sweet 41:38
Again, this is a lesson for me being a negative English speaker because I can write correctly, can speak English correctly. And, in that sense, I have an advantage over native French speakers, because maybe sometimes don’t write correctly or speak correctly, and some people, some, I imagine two colleagues who don’t speak English at all.
David Sweet 42:08
And so the French to the Netherlands, it is worse for me, if my learning French, because you know, I have so much opportunity to speak French, even though I’m living in France. In that case, during my working days, I’m speaking English. And then and then when I’m at home with my children, I’m speaking English as well.
David Sweet 42:30
And then, and then, but then it’s like when they go to bed, then I can speak French to my wife. And then we go to the stores, those kinds of things. I could speak French. And then we have good news with the French people. I speak French there.
Bill Gasiamis 42:45
Yeah, I can see what you’re saying you’re embedded in an English environment most of the day. So it’s really easy to sort of stay in that space and stay in your comfort zone and not get out of your comfort zone, especially early on when you’ve just arrived and right when you want to get to work and be rational at work and communicate well with your colleagues. Right.
Leading up to the open heart surgery
Bill Gasiamis 43:13
I understand that. Yeah. Yeah. That’d be tough. Tell me about the time out. So it took you about a year to have the open heart surgery. So what was the lead-up to that? Like, how did they prepare you for that? Because you’re still recovering from a stroke, and aphasia and all that kind of stuff.
Bill Gasiamis 43:31
So what’s that process? Like? And how did you feel about the upcoming surgery?
David Sweet 43:38
Right? Okay. So, yeah, between my stroke, and my heart operation, it was quite a journey, let’s say. So following my stroke went to the hospital, many identified the head and a leaky heart valve, and they told me, I probably needed to have a heart operation sometime soon.
David Sweet 44:01
At that point, they mentioned to me that it probably wouldn’t be within six months following my stroke, because I guess my brain or something like that needed to calm down fulfilling my stroke before the dare operated on my heart.
David Sweet 44:17
And nevertheless, I think there’s more time to take off work. I don’t know how to deal with that. Because I didn’t know then. Well, first that would take 21 months to work return to work, and even there.
David Sweet 44:34
It took years and years and years for me to get better, but then, I was thinking, This is crazy. But then, thenI had a depression issue following a stroke. And I understand that many people who have strokes have depression, but this totally caught me off guard and I’ve never had anything like this before.
David Sweet 45:05
And yeah, it’s something. So, about two months after my stroke, one day, I got to thinking, My children are growing up, they’re almost teenagers now, or my son was already a teen teenager, and my daughter was 11 years old.
David Sweet 45:24
And they’re no longer as cuddly as they were before my daughter, no longer holding my hand, we were walking the streets and stuff like that. And then I got this thinking about that, and I think this is sad, you know. I feel like they missing out on them.
David Sweet 45:45
And my spending so much time at work is, is, is too bad, you know, it’s just too much time at work as opposed to time with them at home. But I got this thinking in my head. And then, and then I couldn’t sleep thinking about that.
David Sweet 46:03
And then, I think, because of the lack of sleep, and because of thinking about this all the time, pretty soon, everything became sad, you know, just, you know, my father’s age and everything. And so it got to the point, I think because of the lack of sleep, sleep and also thinking about this all the time.
David Sweet 46:25
It became still suicidal, you know, I was thinking about killing myself at that time point in time. And even though I even though I had a loving thank family. I got to that point. And then, fortunately, I got some Yeah, cared for the French hospital system.
David Sweet 46:50
So then I had to go to Psyche Psychiatric Hospital here in France. Again, everyone speaks French there. Some psychologists spoke in English, unfortunately, but other doctors and staff spoke French. And then I had to make a phasic speech to tell me what was wrong with me.
David Sweet 47:12
But there are in those kinds of hospitals that did more of this give you the pills and stuff like that, that deal with your issue, as opposed to doctors taking the time to listen to you. But they’re, they put me on sleeping medicine, antidepressant, medicine and anxiety, essence medicine for me, and then got better quite quickly. And yeah, so then, yeah.
David Sweet 47:43
And then following that, then different chips make family and it’s like, it’s your childhood with them. And then then, a few months later about my heart. I went to the doctors and they said, Okay, you need to have this hot heart operation quite soon now.
David Sweet 48:04
And when did the heart surgeon mention to me that you live, let’s say have this heart operation? And so we scheduled a heart operation in August that year, that August 2018. And it didn’t scare me so much. Because I mean, I just hard operate.
David Sweet 48:30
I needed doctors, they work on people’s hearts every day. And when France there’s really good medical care. So that it wasn’t it was it was for sure it was a bump in the road. That bump in the road, but it wasn’t that difficult. Was it metal metal difficult for me?
Bill Gasiamis 48:53
Wow. That’s, that’s brilliant. I love it. It’s a pretty serious operation as well, right? Just this? Yeah. He says,
David Sweet 49:01
open up your chest. Yeah, and go in there and operate in the heart. But then, you know, there as well. My, daughter and my wife came to visit me and I didn’t want my daughter to know that it hurt where they operated on so we decided to go walk into town today that day.
David Sweet 49:24
And even though it’s hurting and stuff like that, I pretend to know payment meals kind of dancing around better was hurt, though hurting. But that’s
Bill Gasiamis 49:37
just trying to protect her. Yeah, yeah, I understand. I understand. It’s interesting what you said about those thoughts that you went on. And so you started those thoughts and then the cycle of thoughts. You just couldn’t break it for when in time.
Bill Gasiamis 49:55
Made you think of other things now you said that you thought about your age now that’s something that I do. Right? And I don’t know why. And I don’t. It’s something I’ve recently started doing. And I think about his age. And I think about his ad. And then what comes?
Bill Gasiamis 50:15
What’s coming next, I think, the bloody time and it’s not something that doesn’t, it doesn’t get out of hand, the thinking of it doesn’t go out of hand. But I’m paying attention to my dad’s age and the fact that I used to see him a certain way. And now I see him differently is older. His Yeah, more frail. And, you know?
David Sweet 50:41
Yeah, exactly. I mean, it is if is this the first time you’re realizing that your father’s getting older, and sometimes they will die.
Bill Gasiamis 50:54
It is I, I, and I probably noticed that. And what’s interesting is my mom’s not that much younger than him. But I don’t have the same. I’m not sure if the word concerns or worries about her that I have about him. And my dad, but saw him confused and disoriented.
Bill Gasiamis 51:14
Just a few months ago, maybe about a year ago, it was in summer, and I could tell that he had gone to do some stuff and property that he has. And he hadn’t taken water with him. And he had looked dehydrated to me.
Bill Gasiamis 51:30
And I seemed strange in what he was saying and what he was speaking. And of course, I picked up on it immediately. No thought, right? Yeah. Yeah, that a monitor this guy because I don’t know what, what’s wrong with him. And it turned out to be nothing.
Bill Gasiamis 51:45
It turned out to be that he was fatigued and dehydrated. The other thing I think that causes me to think about my dad, as much as I do was when I was in the hospital the first time I ended up in the hospital three times.
Bill Gasiamis 52:04
The first time when he got the news, the Saturday morning that I was admitted to hospital.
Speaker 3 52:12
They left home and they were going to come and see me, my mom and dad. And he was supposed to take some medication. And I think he talked about it, he didn’t eat. And it made him dizzy. And he felt at home and he ended up coming to the hospital in an ambulance.
Bill Gasiamis 52:29
Gosh. So I’m in the hospital, in a hospital bed, because they’ve just discovered a bleed in my brain. And, now I’m getting the news that my parents have come to see me and it was just my mum. And I said, Well, it was Dad.
Bill Gasiamis 52:45
Dad’s downstairs, Oh, tell him to come up. So well, it’s not like that. He’s upstairs because it collapsed at home. And he hit his head and I couldn’t, I couldn’t get him up and I had to ring the ambulance. So he’s an emergency.
Bill Gasiamis 53:00
So that whole thing has kind of made me feel uncomfortable about his frailty that he’s becoming more and more frail. And that rain is what plays on my mind. And I might wake up some nights, I might wake up some nuts just to go to the toilet. And the damn thought will enter my head.
A link between a stroke and depression

Bill Gasiamis 53:25
And I won’t be able to get back to sleep. And I’m wide awake at 230. And then I have to get out of bed by seven o’clock. And then I haven’t slept since 230. And that is a new thing. That is something that never happened to me before.
Bill Gasiamis 53:42
But it right? It happens now weird stuff like that comes into my head and they’re strange loops. And I know that they’re strange. I know that it’s happening. And I try and tell myself to stop it. Right. But it just doesn’t. It just doesn’t.
David Sweet 53:57
Right. Yeah. Yeah. It’s strange. I mean. Yeah, I don’t know, it might with myself and yourself. Is that because of the stroke or not?
David Sweet 54:10
For myself, at least, when I was having depression, I was aware that was depressed, you know, and so do some internet research to see, if there was a link between the stroke and the thoughts that are in my brain all the time, and I couldn’t get rid of the thoughts, you know, and I saw that, okay.
David Sweet 54:32
It’s quite common for stroke patients to get depressed, but I couldn’t find something that linked that to my, my depression I was having.
Bill Gasiamis 54:44
I think there are very few studies and research done. To answer the question that you just asked is one of those things a result of the stroke? I don’t think there’s a definitive way to know but, but it’s common.
Bill Gasiamis 55:00
And I think the statistic is that I think around 1/3 of stroke survivors experienced depression after the stroke. Now, yeah, you might wonder, well, is that because of something that happened before their stroke?
Bill Gasiamis 55:13
So are ongoing issues related to things that I haven’t dealt with from the past as a result of dealing with a new identity, the loss of identity, or the challenges that stroke creates? I mean, there are just so many things to consider.
Bill Gasiamis 55:30
But it is a fact that people who have had a stroke, about 30% of them or more reporting, that they get depressed, and you can completely understand that because they’re dealing with mortality, they’re dealing with what this means for me for the rest of my life, they’re dealing with losing some of independence, losing their hobbies, they’re not able to work.
Bill Gasiamis 55:58
I mean, it’s completely normal for somebody to feel bad about that stuff.
David Sweet 56:04
Yeah. Yeah. And also, then, when I was depressed, you know, how do you go to the hospital at that point? Several times, for a week for the rich education in the hospital. There are people in world wheelchairs, people must worse, worse off than I was.
David Sweet 56:26
And I asked myself, you know, is this maybe the cause of my stress or my depression, it can be around these people? Because, for sure, that was, what it was. That was not something that I was used to being around those people in wheelchairs and not able to talk walk and stuff like that. But I didn’t know that so is
Bill Gasiamis 56:58
emotionally taxing on you, as well as seeing that there are a lot of people who are doing a tough as well as suffering from the aftermath of a stroke.
Bill Gasiamis 57:07
Okay, well, that makes sense as well. There’s an emotional side to feeling to having depression or feeling like you’re depressed is an emotional aspect. Right. And be triggered by many different things.
Bill Gasiamis 57:21
Yeah. Well, and it seems like you got through it somehow. It seems like that medication. Yeah. Right. that cycle of thought.
David Sweet 57:31
Yeah, exactly. It did. And so for sure, the medications, so the sleeping medication, I was able to sleep. And then anti-anxiety stopped that thought going around around around in my brain stuff like that. Different eventually, you got better.
David Sweet 57:53
I could stop all these medicines and medications. And it took a while. Unfortunately, too frustrating to, unfortunately, but to get off those medications. And, yeah. And
Bill Gasiamis 58:11
it’s a great outcome. So then you eventually went back to work. It took us did you say it took you a couple of years to get back to work? Yeah. So
David Sweet 58:19
it’s 21.1 months to go back to work. So the number 20 seems to be a pertinent number for my stroke happened on the 21st. of April, as I’ve worked 21 months and went back to work on the 21st 21st of January 2019.
David Sweet 58:40
And, and I think in France, the law is that they have to you have a stroke, or something seriously, they have to keep your position open for you to go back into. But I told them that I didn’t feel up to managing a team of people anymore.
David Sweet 59:00
And so I returned as a Nam, working in the corporate revenue recognition department. And I’m doing things more where I don’t need to speak so much to people. Nevertheless, when I went back to work, then, I realized going back to work that it was very difficult for me to think of something and speak at the same time.
David Sweet 59:30
And I’ve gotten better since then, for sure has gotten much, much better since then. But this caught me off guard because before going back to work at that point, in my daily life, I was quite comfortable with speaking English.
David Sweet 59:45
And then been trying to think about, let’s say the the policy or a national text and then talk about that at the same time. It’s very difficult But you know, yeah, that did that has become better over time.
Bill Gasiamis 1:00:09
And the the responsibility the list of responsibilities made it easier for you.
David Sweet talks about the Recovery After Stroke podcast and how it’s helped him

David Sweet 1:00:15
Yeah. Yeah. And also now I’m working just four days a week it is for sure this is great. Having a break during the week, I don’t work went work on Wednesdays.
David Sweet 1:00:26
So I just work on Monday, Tuesday Thursday, and Friday, and then have a mental break where I can do other things on Wednesday, for sure. It’s good. And
Bill Gasiamis 1:00:36
it’s a great strategy. Yeah,
David Sweet 1:00:38
yeah. And, you know, for example, now, I was 16. Now, I’m getting involved in another kind of medical thing that just, you know, for example, just several months after I arrived in France, I had cancer.
David Sweet 1:00:55
At that point, I didn’t speak French and the doctor spoke to me in French, and I didn’t understand anything they were saying.
David Sweet 1:01:02
But at that point, I was single and so I told him to tell myself that, okay, this cancer I had was very common, for I trusted data, the till do what is needed to curate the nevertheless, that it was a difficult experience for me being alone in France had to go through chemotherapy and stuff like that.
David Sweet 1:01:29
And I thought, since then, someday, I’d like to volunteer, volunteer to be with an English speaker in that situation. And, and then recently, I heard about a cancer support group in France, for English speakers.
David Sweet 1:01:50
So now, I’m involved in that song. It’s on Wednesdays, Wednesdays, I’ll do some things for that group now. And then I told that group about my stroke as well. And so I so if, if, eventually, there’s a stroke patient in France, who is an English speaker? I hope I can do something for them as well. Yeah.
Bill Gasiamis 1:02:14
I imagine there’s going to be a few of them are already there. That’s the hard part is finding other people when you’re going through there finding other people so you don’t feel alone. And yeah, even so great. But
David Sweet 1:02:27
your podcast is amazing. Talking to you and hearing your your stories. Yeah. It’s great.
Bill Gasiamis 1:02:36
I need it. I need it. Everyday. David, I mean, I’ve, I’ve, I’ve mentioned that a few times in the last few episodes. For me, the podcast is it’s so that I don’t feel alone. It’s still that important to me.
Bill Gasiamis 1:02:51
And I’ve done 250 episodes, and it’s not enough, I haven’t been able to fully get beyond that thing where nobody else around me, thankfully, and frustratingly doesn’t understand what I’m going through. It’s still a thing for 11 years later.
Bill Gasiamis 1:03:09
And yeah, if it wasn’t for the podcast, I don’t know what state I would be in, it’s just great that I can, I can make a difference to other people when they reach out. And at the same time, they’re making a difference to me. And we’re doing this journey together, I couldn’t do it alone. And even though I’m in Australia, and I live in a city where there are 5 million people,
Bill Gasiamis 1:03:36
it’s still hard to find where those people are, that you can connect with that want to talk about stuff, and they’re in different stages of recovery, right? So if they’re in the very early part of recovery, then it might be very difficult for us to interact.
Bill Gasiamis 1:03:52
If they’re younger than me, they might not relate to me, and they might not want to catch up with me. And that’s fine if they’re older than me the same thing. So I figured that if I do this online, the chances that people want to interact with me are going to increase and I have a larger pool of people to reach out to, and I’ll do my thing, and I’ll let the internet do its thing.
Bill Gasiamis 1:04:19
And that’s the beauty of the internet. It does its thing and it brings people like you to the podcast. And that’s the whole reason for it. You know, and I know that that I really, that is an amazing thing that I got out of stroke.
Bill Gasiamis 1:04:38
I got the ability to do things for other people where previously I was still a dad and I still have that for my wife and my kids and my family but I was more selfish. It was about me.
Bill Gasiamis 1:04:52
The stroke has made it about other people and at the same time I have, that’s why making it about other people has made it better for me, whereught being selfish was the way to go at the beginning, right, and now you’re seeing what benefits?
Bill Gasiamis 1:05:16
What are the benefits that you see in helping other people who have gone through cancer? In English speaking how is that benefited? Well, how does that improve your life while it’s improving other people’s lives?
David Sweet 1:05:31
Right? I mean, for myself, it’s really, I feel like giving, giving something to them, I received the something in return, you know, and the point yes, in some, so working other days that week, but some days I hope to make when I retired, is to be with an English speaking person going through chemotherapy, and day in and day out.
David Sweet 1:06:03
And in with the with with them. Nevertheless, at this point, just making, like, for example, I’m doing some publicity for the association. So visiting hospitals, and then the other hospitals about the association. And so we get a poster put up in hospitals. And that’s the kind of thing I’m doing now.
David Sweet 1:06:28
And yeah, with other people who had gone through cancer, so the working in association with them, and it’s, we have that comment. And it’s a good feeling, you know, do that stuff together,
Bill Gasiamis 1:06:46
understanding each other. You know, what you similar stories, you’ve been through similar things. You guys are now making a difference for other people. It’s, yeah, community, it’s the best thing.
Bill Gasiamis 1:06:57
It’s such an important part of recovery from any condition, whether it’s stroke or cancer or heart condition, and you don’t muck around you’ve had everything.
David Sweet 1:07:08
I know, my wife asked the question, what’s next? And I don’t know, but enough no more. Yeah. Who thinks is enough? Yeah.
Bill Gasiamis 1:07:20
Struggle lady. I imagine she’s putting up with everything that you’ve thrown at her. Oh, my God. Yeah, yeah, exactly. How is she doing six years? Out? How is she feeling about this whole thing?
David Sweet 1:07:34
Yeah, so she says, I’ve given her some, I guess, motivation, or I can’t think of the correct word, but it’s, so she had breast cancer in 2012, I think. And I told her about my cancer stories. And I still told her that for me, then, I said, this is like, I have the cancer, like a bad cold.
David Sweet 1:08:06
And I had to take my medicine and is done, you know, medicine was chemotherapy. And and I told her about that and gave her the courage to go through her case with radiation therapy. And so it was very encouraging for her to hear my stories.
David Sweet 1:08:27
And yeah, and then you know, she’s she became a quite a question lady, because my medical issues you know, at some point students can really freak out and then to be human in a very Christian I guess, Father Jesus find my stories that
Bill Gasiamis 1:08:51
encourage them to become more religious or more. Was she a nonpracticing Christian before that?
David Sweet 1:08:59
Yeah, exactly. So she as a child in the same way as it the same way as a child, we go to church on Sundays. And then as a young adult, we’re not going to church. Very nicely mean for some Easter, some Christmas and stuff like that.
David Sweet 1:09:15
And then um, and then. Yeah, and then and then it finds some Okay. I have quite a few medical histories, but at some point in time, yes. She said that’s enough. And then somehow she got to see Jesus or something like that and decided to follow him. And
Bill Gasiamis 1:09:43
conditions like this and going through tough times do deepen people’s faith. Some people have to have something to believe in. That’s beyond what we are going through. There’s got to be a greater story, a greater purpose, a greater reason to go on.
Bill Gasiamis 1:09:58
You know, there’s plenty of reasons to go On locally, but also, there’s got to be a greater purpose in life then. And there’s got to be more to it than just us. Now I am, I was raised as a Christian, but again, I used to go only when my parents dragged me, and now right exactly Easter and Christmas.
Bill Gasiamis 1:10:17
So I’m not deep. I’m not a practicing Christian to the extent that some people are. And I’ve kind of internalized God, I mentioned that on a couple of podcasts that I that I haven’t released yet that I’ve recorded. I’ve internalized God. So instead of having God outside of me, I’ve put God inside of me.
Bill Gasiamis 1:10:39
So that when I ask the question of God for guidance, I’m not asking an external being or something external of me. So that when it fails to give me the answers, I don’t feel like I’ve been let down. When I internalize God, and I go to, alright, what do I do now?
Bill Gasiamis 1:11:03
How do I overcome this situation that I’ve found myself in? I feel like what it does is allow me to come up with the answers, rather than externalize the request and go to some kind of external source for solutions.
Bill Gasiamis 1:11:21
And by internalizing God, when I describe myself as God, God’s within me or I am God, or God lives within me when I do that. It brings the whole faith into me, and I’m doing it with myself. And with that external thing, if it’s an if it’s a, if it’s a thing, or I can’t describe it, but Right, okay.
Bill Gasiamis 1:11:47
But that way I try to, I try to, it’s how I’ve deepened my faith by breathing it in internally and then trying to access it from in here. Right. I’m kind of doing it. Okay. Yes. I’m being guided by my God at the same time to know, right,
David Sweet 1:12:09
okay. Yes. Okay. Yeah, if that works for you.
Bill Gasiamis 1:12:13
Yeah. That’s the thing, right? It’s beautiful. What you said is, if it works for you, that’s the beautiful part about it. And whatever works for your wife, awesome. And I write if I asked some stroke survivors, you know, what’s the best thing that they got out of stroke?
Bill Gasiamis 1:12:28
They’ll say, Oh, it was finding God again. Or Right, exactly. Who did you reach out to help to for help with the hard days? Oh, I was god. Wow, man, whatever gets you through, I agree with it. And it took me some time to contemplate that topic again.
Bill Gasiamis 1:12:48
Religion, God, spirituality. It happened after this big dramatic episode in my life at 37. Yeah, up until then, I never considered it. I just did what I was told. When, I became an adult, I stopped doing what they were telling me, you know, and I didn’t go to church and I didn’t see it at all.
David Sweet 1:13:08
Yeah. For me, like, my faith has become stronger, stronger, because of my stroke. You know, the same thing before. I noticed because of me, the kind of person I am or the kind of job that I do or whatever, I’m, for me, I just okay.
David Sweet 1:13:31
I see some things like, okay, for me, when I die, you leave a device out, and that’s, I won’t be eating anymore. Nevertheless, that’s the level. Nevertheless, some of your guests, for example, one of your recent guests, saw Jesus that many of his comments, and then I thought, Wow, this can be true and other stories out there.
David Sweet 1:13:57
That tells me there is life out there. So I believe that as well. So that’s why I decided, okay, I’ve found Jesus. Because it’s likely your that that is likely the way it’s still, you know, sometimes I think maybe when a diet lights are out, that’s it, you know, so
Bill Gasiamis 1:14:19
yeah, it’s plausible. It’s plausible that when we go it just lights out. But that’s that interview fascinated me as well. Right? Yeah. Tell everyone what that interview was that you were talking about. And he was having a stroke. And he was in the hospital and he was in a coma. And he was walking through. Yeah.
Bill Gasiamis 1:14:43
It was Rafael De Leon. And he was episode 243. And right, he was imagining he was dreaming that he was walking for 21 days or something like that. Yeah. And his feet while he was lying down. Were becoming calloused and they will. Yeah. Like he was walking barefoot.
David Sweet 1:15:04
Yeah, that’s amazing. That’s amazing. It was a great episode. Yeah, it was a great
Bill Gasiamis 1:15:10
story. And I, and it made me think again, and it made me feel like, alright, let’s not discount everything, I’m not going to just put everything out of my mind and say nothing is possible. I’m just going to accept that many things might be impossible, and I don’t know which ones are right.
Bill Gasiamis 1:15:27
It feels good to internalize God the way that I said, and to make God myself and to make me God. And if it feels good, and it’s not doing harm, and it’s supporting me, and it’s helping me recover. Go for it. Absolutely. Do that. Just like your wife and many other people, we’ve found God is a serious illness. Yeah, it does something. It supports healing. And that’s a great thing.
David Sweet 1:15:57
Right? Yeah. There’s one thing I wanted to ask you and ask your, guests for input on several years ago, I’m following my stroke, I met a man who had a brain injury, as you said, not it’s rare for stroke, but another kind of injury, he failed to say.
David Sweet 1:16:19
And then he was trying to do things that make his brain recover. And he got this idea of taking cold baths, putting ice in a bath in going out for a few minutes. And then he told me about this guy, the Wim Hof Method, and showing a book here,
Bill Gasiamis 1:16:40
I have that book.
David Sweet 1:16:42
Alright, you know, he had this book. And so the Wim Hof Method combines breathing exercises, and taking a cold or cold shower baths. And, and I tried this method falling, learning about that. And, and I was amazed by the results, you know, the breathing, probably the breathing, made it.
David Sweet 1:17:12
So, I, my speech recovered temporarily, completely, you know, and so I remember going to my speech therapist, who I still go to once a week and I told her Hey, my speech is bettered, this guy is amazing, you know, but then eventually deteriorate deteriorated.
David Sweet 1:17:37
And so, anyway, just looking for other people’s experiences, if they blend the Wim Hof Method did the the benefit them and go back to otherwise before or not also on the Wim Hof Method, with red hot methods, on the websites and so forth. They don’t it is written I don’t recommend it for stroke patients.
David Sweet 1:18:08
I talked about this to my cardiologist and my neurologist, that this kind of method. And both the neurologist and cardiologist said they didn’t see anything wrong with me. I also wrote to them, and they sent me something back.
David Sweet 1:18:30
And he mentioned that the warning is only a precaution. And rather err on the side of caution that we don’t have specific scientific studies to support this.
Bill Gasiamis 1:18:46
Yeah, so it’s a complicated issue, and I’m probably not a good person to comment because I didn’t have the guts to do a cold shower. I cannot bring myself to put myself into a cold environment. I’ve never liked the cold.
Bill Gasiamis 1:19:02
And now even with my left side with my deficits, I’ve tried to mentally prepare myself and have a cold shower. I just cannot bring myself to do with the deficits. The left side is more sensitive to cold than the right side. And it hurts just feeling a cold breeze.
Bill Gasiamis 1:19:22
Just feeling a cold breeze on my left side hurts and Okay, yeah, imagine what it would be like if I got into a cold shower. Yeah. Now maybe I’m just playing in my head too much and making matters worse. But the breathing I believe breathing has a lot of good outcomes because what does what it does is oxygenate the blood and the tissues of your body a lot more than our standard way of breathing.
Bill Gasiamis 1:19:54
So I think that his big intention is to sort of get people experiencing what it’s like to be fully breathing and to be oxygenating your body and how you can do that on your own at any time just by going into the process.
Bill Gasiamis 1:20:14
So I feel like what he’s trying to do is empower people, to show them how much they can positively influence their body, simply by changing the way that they breathe. Now, with the cold stuff, I don’t get that honestly, I just, can’t get my head around it.
Bill Gasiamis 1:20:31
Right. And it’s because of my own beliefs about how I don’t like it’s one of the stories. I’ve always told myself how I don’t like the
The benefits of cold showers and plunges
David Sweet 1:20:42
Yeah, but one thing I, myself, I’ve gone beyond the kind of reluctance to take a cold shower some nights. And it too, makes me for sure happier, and more energetic than before going into a cold shower.
David Sweet 1:21:04
For they mentioned in a book, and yeah, on the website and so forth, that people have depression, the cold showers help them. And it makes them less depressed.
Bill Gasiamis 1:21:24
Yeah, yes, because it stimulates the release of certain neuroscient neuro neurotransmitters like dopamine and serotonin. And, and it creates, it puts the body into a state of shock. So the body has to kind of reset itself and go into this sort of survival, survival mode.
Bill Gasiamis 1:21:45
And it isn’t only temporary, it’s only temporary. And in that survival mode, the body does a lot to support the well-being of the organs and the rest of the body. So it has this reset, kind of it has this reset type of result.
David Sweet 1:22:06
Yeah, results.
Bill Gasiamis 1:22:07
Yeah, it has a kind of like a reset result in the body. And when you take the body to an extreme environment, the body just goes, Okay, well, let’s get going. And let’s make things work. And let’s give that person as much as they need to get out of this trouble that they’re finding themselves in.
Bill Gasiamis 1:22:26
As a result, people feel the rush of the release of dopamine, serotonin, and all the other things that it does, it also converts your fat, and your fat cells uniquely and differently to make them more supportive of your health rather than negatively. And it decreases inflammation in the body. So it causes the release of other chemicals that support an anti-inflammatory response in the body.
Bill Gasiamis 1:23:04
So I kind of know what it does. I kind of hear lots of good work about it. Lots of good words about it. But I haven’t yet done it. I haven’t yet had the guts to jump into a cold shower or a plunge bath. It’s just Yeah, I just can’t think of anything worse.
Bill Gasiamis 1:23:24
But one day, see, that’s the thing. I’m thinking about it in my head. One day, I’ve just got to do it and just get an experience. I know it’s not going to kill me. Right, but just I’m afraid of the cold on anions we
David Sweet 1:23:39
Okay, now, you did that had to get describing the benefits?
Bill Gasiamis 1:23:44
Yes. They’re just some of the benefits. I will ask the question. If anyone’s listening and watching this on YouTube, leave some comments below the video about your experience with cold plunges, especially if you’ve had a stroke. And I’ll also ask my Instagram followers and see what they have to say. I might get you involved in that conversation if you’re on Instagram.
David Sweet 1:24:15
Yes, I’m on Instagram. So yeah, I’ll look you up actually.
Bill Gasiamis 1:24:20
Yeah. All right. Do that. Follow me. And I’ll ask the question in the next couple of days. And we’ll see. If we get a response. I’m sure. There’s been a whole bunch of stroke survivors that follow me that have done it.
David Sweet 1:24:33
Okay. Wow. Okay. Fantastic to know.
Bill Gasiamis 1:24:36
We’ll get some feedback. But look, I appreciate you reaching out and being on the podcast. Thank you so much for joining me and telling us your story. And I wish you well in your ongoing recovery. And yeah, congratulations on the work you’re doing in the cancer space.
David Sweet 1:24:56
Right. Well, thank you much Bill. And it’s a real pleasure to meet you on Zoom. And thank you very much.
Intro 1:25:05
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Intro 1:25:22
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Intro 1:25:38
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1 hr 27 min
May 22, 2023 Neck Trauma And Stroke – Suzzane E.
Neck Trauma And Stroke – Suzzane E. was involved in a motor vehicle collision that caused a carotid artery dissection that was initially described as a sprained neck.
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Highlights:
00:44 Introduction
01:13 Neck trauma and stroke
05:02 The importance of getting immediate treatment
14:02 Life before the stroke
16:30 Early deficits she had to recover from
23:52 How the stroke has changed my life
29:52 Why she didn’t reach out for help after the stroke
43:38 Dealing with post-stroke fatigue
49:20 Knowing your limits
53:45 Dealing with sensory overload
1:00:05 The hardest thing about stroke
Transcript:
Suzzane E. 0:00
I think the areas that I’m still working on improving, you know, I think that they’ve made me a more empathetic person, It’s made me more open, It’s made me less judgmental, It’s made me more caring, it’s made me more loving I think towards other people. I feel like I think sometimes after traumatic experiences people can harden and I felt like my heart just turned to mush.
Intro 0:31
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Suzanne

Bill Gasiamis 0:44
Hello, and welcome to episode 251. On the recovery after stroke podcast, my guest today is Suzanne who was in a motor vehicle collision that caused a trauma to her neck, which was missed during the post-accident medical checkup that later resulted in an ischemic stroke. Suzanne, welcome to the podcast.
Suzzane E. 1:07
Thank you for having me, Bill.
Bill Gasiamis 1:10
Thank you for being here. Tell me a little bit about what happened to you.
Neck trauma and stroke
Suzzane E. 1:13
So I had an ischemic stroke, a little less than a year ago. So the reason I had the stroke was because I was in a car accident. And the car accident caused some trauma to my neck. And I had gone to the emergency center after the car accident and they did a CT scan.
Suzzane E. 1:37
And they didn’t find anything. They just said to come home and rest. They said I sprained my neck, and that I’d be pretty sore. But that was it. And then three days later, that’s when I had a stroke. And it was. I mean, the car accident in itself was intense having the stroke three days later was a surprise. I didn’t see that coming. And it completely changed my life.
Bill Gasiamis 2:04
You’re not you’re a person who’s told me this about the collision. And then later on down the track, sometimes six months, a feather, there’s a tear in one of the vertebral arteries.
Suzzane E. 2:22
Mine was my carotid artery.
Bill Gasiamis 2:24
Okay, right. So it was a carotid artery dissection. Was it an internal dissection? They did it ? create a flap to and therefore, they created a clot. And then that moved forward? Or is it a block at the site of the dissection?
Suzzane E. 2:42
My understanding was the dissection caused a clot. So the clot formed afformed the accident, and then the clot fully for three days after the accident. And that’s when I had the ischemic stroke.
Bill Gasiamis 2:58
Okay, so the clot formed and then traveled up ttravelede head somewhere.
Suzzane E. 3:04
So I was, I mean, my memory of when the actual stroke happened is patchy. ad the car accident, and I was pretty sad ore afterward. Thafterwardhad a spring in my neck. But that was it. I was honestly really frustrated about my car.
Suzzane E. 3:23
But I wasn’t thinking that much about my health. I was like, Okay, I’m alive, great. I felt like I walked away with like, without a scratch. And I felt really lucky. And then, three days later, I had gone back to work that day, because I took the first two days off.
Suzzane E. 3:40
And then I went back to work that day. And I was home. And I live with my roommate. And so she found me when I was having the stroke, and she called the ambulance. And then I went to the hospital, and then they performed away. So I felt like, it all happened so fast. I felt like one felt I was fine. And then the next second I wasn’t.
Bill Gasiamis 4:05
It’s just amazing that I’m so pleased to hear that it all happened so fast. And that meant that you were in the right place at the right time, like you in health in a good place where they would support you care for you make you better, and make it p, possible for you to be here a year later. Nearly.
Suzzane E. 4:24
It was, you stroke happened when I was like mid-conversatimid-conversationing she was in the room right next to me. And I went to my room to grab something. And it felt like it was just you know, when you power down a computer. That’s what it felt like in my brain.
Suzzane E. 4:43
It just felt like everything was just shutting off. And then she found me and she didn’t know what was going on. I couldn’t move the right side of my body and I wasn’t talking. So she called the ambulance right away and she suspected it was a stroke right away too.
The importance of getting immediate treatment
Suzzane E. 5:02
So the ambulance got there. And then they administered. I forget what it’s called.
Bill Gasiamis 5:08
TPA?
Suzzane E. 5:09
Yes, they administered that at my house. They admit right where I’m sitting right now because I’m sitting on my bed, but they administered it at my house. And then they took me to the hospital, and the hospital is only s from where I live. So I was hospital, and they got me in surgery right away. So I have a stent placed in my neck.
Bill Gasiamis 5:36
To support the tear inside your carotid arteries so that it strengthens it. And then you’ve got a clear passage so that blood can continue to flow. Oh, my gosh, it’s overwhelming to hear how quickly it all happened to you. And I went through it.
Bill Gasiamis 5:55
I’ve been through my version. Ay, one was very long, drawn out extended three years brain surgery as so many things happened over a long period period very short amount of time. And I imagine that well, like so much needed. I didn’t get it at all.
Suzzane E. 6:17
Me neither I feel incredibly unlucky for having it. And then I feel incredibly lucky for the recovery and access to like health care that I had, I feel both where it’s like, on one hand, you know, it’s really unlikely that I had a stroke in the first place. But then it’s also really unlikely that I had all these things line up to where I could get care right away.
Suzzane E. 6:39
So, you know, I feel really lucky that I’m here and then I’m alive. And that, you know, because I got care so quickly, and I got rushed to the hospital so quickly. You know, I think that that had such a big impact on my recovery because I had surgery right away. I hear a lot of stories where people you know, don’t get for like 12 hours or a day or multiple days.
Bill Gasiamis 7:02
Go roomie! High five to your roomie.
Suzzane E. 7:08
I know I owe her my life literally.
Bill Gasiamis 7:12
Wow, you can say tan it to her. That’s fabulous.
Suzzane E. 7:18
She’s my best friend too. We’ve been best friends since we were like 12 or 13 years old.
Bill Gasiamis 7:24
You chose well.
Suzzane E. 7:26
I did, this wasn’t in our plan. But yeah.
Bill Gasiamis 7:29
Yeah. Wow. So then you’re through all this stuff, family, and notifying, people. How do you go from perfectly healthy today so I’ve got to tell people, I’ve had a stroke and I’m in the hospital? Did you Navi?ate that? Did that happen at the same time? Was your friend involved?
Suzzane E. 7:51
That’s a great question. I didn’t navigate any of it because I wasn’t verbal for the first little bit after my stroke. And I couldn’t talk and my brain was processing what was happening. Like I couldn’t process it. I had a stroke for the first couple of days.
Suzzane E. 8:10
People kept telling me and I kept asking again, what happened? I didn’t like didn’tould sit tart asking what happened. So when it happened, my best friend who I live with still currently. And I live with them at the time ofthem the stroke. So she’s close with my family, we grew up together.
Suzzane E. 8:31
So she was in charge of notifying and contacting everyone. I Austin, Texas, and my family is in Wafamily is State. So they all got on a plane immediately. And they flew to Austin that same night. So they were there within 24 hours of when I had the surgery. So my memories, me waking up and my parents and my sister being there.
Bill Gasiamis 8:59
When your brain was shutting down in that zone, did you have any concerns about yourself or or any fear? Any or thoughts about what was happening? I know a lot of stroke survivocommentedented that tcommented no idea what was happening. They didn’t feel concerned or worried or anything like that after they woke up when all that stuff started to come back. How do you navigate that moment?
Suzzane E. 9:31
It’s a good question. You know, I wish and I don’t wish that I remembered it more but it’s very patchy fIt. ItllItfusiind of put the story together in my mind, but I remember you know, I just remember I was standing and I was gonna grab something from my room. I don’t remember what I was grabbing. And then I remember getting dizzy.
Suzzane E. 9:56
And I just remember falling over and then there was this big patch where I don’t have any memories. And then I remember patches have been in the ambulance. And I remember thinking I was dying. And that was terrifying. I felt like all my memories were also only werethe cars, the right side of my body went offline. So the stroke was on the left side of my brain. So all of my first memories are on the left of the room, which is interesoo. But I just remember, like looking at the EMT that was in the ambulance, and I was like, I’m dead. I’m dying.
Bill Gasiamis 10:46
Yeah, that’s fine. Yeah.
Suzzane E. 10:49
But then I got to the hospital. And I felt like, I have so few memories in the hospital. I feel like, I remember that I couldn’t talk. I remember people were alking around me and rushing around me. And I remember lights. And I remember this flashing light from my CT scan that they did at the hospital.
Suzzane E. 11:11
And I remember not knowing what was going on. I was terrified. I was really confused. But at the same time, like, I think, because I don’t remember so much. It was kind of like a blessing and a curse. Because I think that you know, it was it was traumad I don’t have a lot of memory of it.
Bill Gasiamis 11:36
Yeah, I was completely cognitively away the first time I presented the hospital with a blade in my head, and I knew exactly what was going on. And I was even acting like nothing was happening. And the doctors and nurses were concerned that I wasn’t staying in my bed and that I ws walking around and meeting people for coffee downstairs and all this stuff.
Bill Gasiamis 11:58
The secondThe was spacedelt likitwas in a different dimension. Everything was just kind of I felt like I was moving through this dimension without knowing exactly where I was and how to interact with it. And it was just kind of like a floaty. Whoo, we kind of thing. It was strange. And I didn’t know how to interact with the people around me. Do you recall interacting with the people who came to visit you who flew in? And having them there? And did that? Was it comforting to have people around you? Do you know how you interacted with him?
Suzzane E. 12:39
Yeah, I remember. When I first got to the hospital, it felt like everyone was talking around me. But I couldn’t understand what anyone was saying. I could that they were talking to me, I could tell it. They wanted me to say something. But I couldn’t talk and I didn’t understand what they were asking. I just felt that there was commotionchaos aroe.
Suzzane E. 13:00
But I didn’t know it was going on. And then. But I remember my best friend being there. I remember knowing that she was there. And I remember knowing who she was. And then I remember waking up at some point, and my parents were there. And I think I just start crying when I saw them because it was just like, I was so scared. I didn’t know it was happening to me and I couldn’t move the right side of my body.
Suzzane E. 13:31
And I just I was so scared. And I couldn’t talk then either. I think all I said was hi because that was like the speech that I could form. And, but I was comforted that they were there. You know, I remember I felt safe when they were there. But I also was like, Oh, something really bad happened for them to be here for them to be in another state, and for me t,o, wake up at a hospital. I knew something was reallyn’t know what happened.
Life before the stroke for Suzzane E.

Bill Gasiamis 14:02
What stage of life were you in a lot of young people will tell me about having a stroke and they’re in the middle of something major usually it’s university or something vehicle. Even something minor even moving out and living on your own with a roommate they’reroommateig time. times in our lives. No one’s going tan I wasn’t doiang much. There wasn’t anythinning. What stage of life were you in?
Suzzane E. 14:28
Yeah, well, I graduated college a few years ago, kind of early on in the pandemic. And I started working full-time in Wfull-time State for a whStateAnd I felt like I was just burnt out. I was kind of at a dead-end job tdead-endally liked mkers but I wasn’t using me in the way that I wanted to. But I did I enjoyed and I wanted to change so, I had recently moved to Austin, Texas right before the stroke.
Suzzane E. 15:02
I moved in June of 2022. And I had my stroke in August. So I had just moved to a new city. I didn’t know that many people. You know, I had my best friend that was here. And I knew a couple of people, my coworkers, but I didn’t have a support system here yet. And yeah, it was really scary, like doing it away from, you know, home and having it happen away from home because I didn’t have anything set up here yet.
Suzzane E. 15:34
I felt like I was, I felt like when I first moved here, I wanted just to be young and new city. And I, I started working when I moved here. And so I just felt like I was getting into the groove of things. I was working. I was starting to meet people. I was starting to make friends. I was starting to like, explore a new city, and then just like, bam, that happened.
Bill Gasiamis 15:54
Yeah. How, long did you end up in the hospital? Well,
Suzzane E. 15:58
I was in the ICU for five days. And then I was in. Like, I was at the hospital for another two days. And then I was transferred to an inpatient rehab center.
Bill Gasiamis 16:13
What? What was that? Like I interrupted, did you finish what you were saying?
Suzzane E. 16:19
Oh, and then I went to an inpatient rehab center. And then I did outpatient rehab for a long time.
Bill Gasiamis 16:25
Yeah. What deficits were you dealing with that you had to recover from?
Early deficits Suzzane E. had to recover from
Suzzane E. 16:30
Early on? Well, things were changing so quickly. So early on, I couldn’t move the right side of my body. Everything was I couldn’t feel anything. And I was talking at first, but it was just, it was really small sentences, I was getting really confused. I felt like my processing, still, I felt like I was struggling but I felt like I couldn’t process things, my memory was affected.
Suzzane E. 17:02
The stroke was located on the left side of my brain. So they said that the parts of my brain that dealt with language, and fine motor control, were affected. So I had to do a lot of physical therapy, and a lot of occupational therapy and speech therapy. So when I was in the hospital, I kind of started to save some words.
Suzzane E. 17:31
And I was able to kind of regain some of the feeling in my body. But once I got to the inpatient rehab center, that’s when I like worked on like, walking again, and moving around again, and trying to hold a pencil again, and like, sign my name again. And just like all those things that you never think you’re going to have to relearn.
Intro 17:55
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 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, and you probably don’t know what questions to ask.
Intro 18:19
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 18:39
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 18:58
Yeah, you’re right-handed. Obviously.
Suzzane E. 19:01
I’m right-handed.
Bill Gasiamis 19:04
That would be interesting. You’re young, 25 years young. So you’ve got a lot of things going for you when people are young, and they have a stroke, they’va e got a lot more things going for them than if you were older, for example, in your seven years or whatever, there’s less potential for recovery which is something that I hear that I don’t believe in any way that I tend not to like to say to people.
Bill Gasiamis 19:29
But you’re also in this phase where your identity is what it is, and you’re just shifting and changing your identity because you have moved from home. You move to another state of move into a place with a friend. You know, there’s all these things that you’re doing.
Bill Gasiamis 19:48
You’re already going through a lot of upheaval changes and that type of thing. And now you’re dealing with being in another state as well as the changes that are caused by this stroke or thing that you haven’t you went up for that part of it you weren’t interested in, going down that part of it.
Suzzane E. 20:08
No, I wasn’t.
Bill Gasiamis 20:10
How are you reflecting on yourself? And how is your identity being impacted when you’ve moved into that phase with that with that, oh, my gosh, I’ve got to learn how to write again. And I’ve got to learn how to walk again, and all those things. How do you comprehend that?
Suzzane E. 20:29
I mean, it was terrifying. I think I didn’t know what my future was gonna look like at that point. Because like, previously, I’d been fully independent. And I, you know, could move around, and I could drive and I could go to work. And I had a really like, relatively, “normal life”.
Suzzane E. 20:52
But after the stroke, when it first happened, I didn’t know what my future was going to look like, I didn’t know if I was going to be able to work full time again, I didn’t know if I was going to be able to drive again, I didn’t know if I was going to need, like, at home care for a long time, or indefinitely, I just didn’t know what that was going to be like. I was really like fortunate though, my family, flew down immediately after it happened.
Suzzane E. 21:24
But then, even after the immediate stay in the hospital, they were by my side, like, my mom would fly down. And then she would go back, and then my dad would fly down. And then he would go back, and then my sister would fly down. And then I would have friends that would take care of me.
Suzzane E. 21:39
My best friend, who I live with and who found me when this happened, stepped in so much as my caretaker. I had an outpatient care team that helped me too. So I was fortunate, I had a lot of help, but it was still scary, just not knowing. You know, like, I had this idea of what my life was going to look like before the stroke. And all of a sudden, none of that was certain.
Bill Gasiamis 22:08
Yeah, stroke tends to do that, you’re going along perfectly fine, one day, and then you’re dealing with the most dramatic upheaval, the next day, and then from then on. And even though, you know, you’re brave, I’m gonna say it’s brave because I’ve never done it before, you’re brave, and you left your home and you went to another state and you set up shop again, you know, without any resources, of local knowledge or anything like that.
Bill Gasiamis 22:41
You’ve just gone blind to this new way of doing things. You have a certain amount of skills to do that don’t you? You know, how to interact with people, you know, how to get a job, you know how to pay a bill, you know how to do all the things that you need to do to sort of stay on your feet, you know that you’ve got that.
Bill Gasiamis 23:04
But then you’ve got to deal with stroke recovery. And you’ve never done that before, you don’t know how to do any of that stuff. It’s foreign to you. You might have heard about the term stroke. But you may not know what it means. And even though you’ve seen somebody who’s had a stroke, you don’t know what they’re going through, you’ve got no idea.
Bill Gasiamis 23:23
So how did you go about discovering? How do you do that? How do you transition into I’ve got to recover from something I’ve got no idea about, and I’ve never heard about and I am unaware of, other than the fact that I’m living in it? How do you do it internally, I know that other people are helping you, but how did you grapple with it?
How the stroke has changed life for Suzzane E.
Suzzane E. 23:52
I mean, it was terrifying. And I had questions about everything the whole time, I was going through it, like, you know, where I was just like, I’m not strong enough to do this. Like, I felt sorry for myself for a long time. You know, and I would just like, I wanted to just, like, throw in the towel and be like, That’s it. I’m done. Like, you know, because of everything that I was facing at the time, it just didn’t seem I feel really lucky because right now, I feel like I’ve made a really good recovery.
Suzzane E. 24:28
I am not 100% back to where I was before, but, you know, I’ve been able to gain a lot of my independence back, but early on in the stroke like that just wasn’t a possibility. And that was terrifying. I think I don’t know how to say this. I think that the stroke did change my life for the better in some ways, though, because I think I created a new meaning in my life afterward.
Suzzane E. 24:57
You know, I think my relationship with my family got a lot closer. I felt like before the stroke, There were so many things that were just like, superficial that didn’t matter that I was so wrapped up in or just, you know, I think I was just kind of lost before this all happened and I was lost when it happened didn’t help. But I think because of the nature of stress, you have to rebuild your life. And I’m proud of how I’ve rebuilt mine.
Bill Gasiamis 25:31
Yeah, I would be too. And you’ve said something that a lot of stroke survivors say. But what’s interesting is I said that at 37 that before my life. Before stroke, my life was a little bit weird, strange, and different, but it’s normal. It’s the way most people go about their life, I can reflect on it now because I’ve had this kind of, we’ll call it. My gosh, I don’t even know what the word is. But I think what I’ll call it is growth, or I call it growth, post-traumatic growth maybe that’s better.
Bill Gasiamis 26:09
Before that, I hadn’t had any experiences that were my experiences physically happening to me, which made me have to dig deep and find other ways forward. So I just went about doing things the way that I used to, and it was the way most people did it. And I thought it was okay, and I thought it was serving me well, but it wasn’t 25 to have that insight, I think that’s an amazing insight to have.
Bill Gasiamis 26:39
Because now that I’m 48 I reflect on when I was 25. And I don’t think that even though you know, 25, I didn’t know as much as I know now and I wasn’t as aware. as knowledgeable as I am now. I didn’t know if I was that aware, aware enough to be able to make the distinction that you have made, which is I was focusing on superficial things. Now I know what’s important. I was focusing on all these things that didn’t matter, now I know what matters.
Suzzane E. 27:14
I don’t think I would have gotten there unless this happened. I think that that’s the nature of like, when things happen that are so unexpected, and traumatic. You know, I think it just, like fundamentally it kind of tears everything down. And you kind of have this, you know, I felt like even before the stroke, I struggled with my mental health.
Suzzane E. 27:44
And I wasn’t always like, I didn’t always have the most healthy relationship with substances. And then after the stroke, it was just, I was so clearly not okay, that I felt like I had to be so vulnerable, I had to ask for so much help. And I, you know, I had to, like address a lot of things that I didn’t address like pre-stroke that I had just been putting off and like numbing for years.
Suzzane E. 28:12
But it was all of a sudden, like, you know, I just felt like it was like a scorched earth. And I felt like there was just there was myself before the stroke. And then there was myself now and I just like there wasn’t any other option. Like I couldn’t go back to that version of myself, or that version of me wasn’t there anymore.
Bill Gasiamis 28:32
What a blessing.
Suzzane E. 28:33
Yeah, I mean, I think I’ve created meaning from the experience. I wouldn’t wish it on anyone. But you know, I’m grateful to be here.
Bill Gasiamis 28:44
Yeah, I wouldn’t wish it on anyone either. But if you’re gonna get such a good thing out of a terrible situation, then bloody hell, why not? And of course, I never want to see anyone, and well don’t get me wrong. That’s not it. It’s just that that ability to shift your perspective is never going I mean, it’s exactly what I said it’s scorched earth. What a start, like a fresh slate everything new rebuild, however you want.
Bill Gasiamis 29:18
Yeah, sure, you’re going to take some of your old life into that new version. But you have the opportunity to just let everything that didn’t serve you go. And I love what you said about I love what you said about what I got out of what you said about your mental health. You were using substances to numb it right? And then you had to deal with it. Do you feel like the reason that you had had substances in your life and you had mental health issues? Was it because you didn’t reach out for the help that all you had to do was reach out for?
Why Suzzane E. didn’t reach out for help after the stroke

Suzzane E. 29:51
Most likely. I mean, I think there was a variety of reasons but definitely because of my pride. You know, I think I just felt like it was Ever bad enough or that like, because I was still going to work or because I was still, you know, like functional that, like, I didn’t need help. And I was just kind of like living this like muted version of my life where, you know, I wasn’t happy or fulfilled, but I was just like getting by.
Suzzane E. 30:20
So it felt like I never really like needed to. I mean, I sought out therapy before the stroke, which ended up being such a huge resource after the stroke. I feel like I couldn’t have gotten through this without, you know, all of those resources. But yeah, there was just a sense where it was like, I couldn’t pretend that I was okay.
Bill Gasiamis 30:45
Because you definitely would. Yeah. I love that. That was me, as well, I got to that point where everything that I was doing before stripe was kind of tending to my challenges, but not solving them. And I think what was lacking was my taking responsibility for the solution. So I was going to counseling, but I was kind of making it their responsibility to make me better.
Suzzane E. 31:09
Yeah, I was doing it. So like, half-assed. I don’t know if I can swear on this. But yeah, I wasn’t fully invested in it. And I, you know, didn’t take it that seriously before this. And also, when I was, I was 26. Now, but when I was 25, right before it happened. In some ways, I felt invincible.
Suzzane E. 31:30
I felt like the things that we’re doing, were never going to catch up to me in terms of like, how much I was drinking, or just like, I never thoof the impacts of it. This is so naive to say, but I feel like a lot of younger people feel that way. And then something with their health happens. And it’s like, oh, I don’t want that life that I had before.
Bill Gasiamis 31:55
Yeah, look, I’m 48. But 25 was only a couple of blinks of the eye away. It was, it’s that quick. I mean, you just get to 48. And you look back and you go, Oh, my gosh, I was 25 Just two blinks ago. You know, like, It’s ridiculous how quickly you get to 48. Now, there’s a lot that happens between 25 and 48. So it’s not like you haven’t got a lot of additional stuff that’s occurred. But time just seems to just go right. So when you’re saying when I was 25. And then I’m 26. Even there feels like just a moment. Like, let’s events. It’s a bit a quicker moment. But
Suzzane E. 32:35
yeah, this has been the fastest and longest year of my life. Yeah, right.
Bill Gasiamis 32:39
So it’s a time that distorts in weird ways, and changes. And the fastest because all of a sudden, you’re a year out of what happened. And that’s like, oh my gosh, I’ve made it a year out. But then it’s like, oh, my gosh, that was like, just a year ago.
Suzzane E. 32:56
Yeah, yeah. I mean, I don’t know, even now like, I still don’t know what my future looks like post-stroke. I feel like I am still in very much active recovery in a lot of ways. But I have been grateful. I’ve gotten back to work recently. So I’m working again. And I have recently started driving again, which was huge for me.
Suzzane E. 33:24
That was a big goal after everything, so yeah, I think it’s, I still have so many questions, I still don’t know what I’m doing. I still have like, really bad days where I just, I think sometimes I feel broken because of what happened. And then other times, I’m proud of myself, but it’s just, it’s so many highs and lows.
Bill Gasiamis 33:48
Yeah, I love that term broken. So some people are broken from stroke, they are typically specifically in a spot broken, it just depends on how you want to use that if you want to use that as an analogy that’s going to support you or discourage you. And if you’re using it as a discouragement, then I would refrain from using that kind of language, right?
Bill Gasiamis 34:10
But it’s kind of accurate in a way because something is missing now, that’s something missing. That’s what makes you unique. In my mind, now I can interact with people from all around the world at every single age stuff that you and I would never have had in common before. No reason for us to other than that you’re an amazing person and a great guy.
And we would chat because we’re just good people, right? Other than that, we would not have any reason to get together and interact. But here we are. And I think that’s kind of our injuries are what have given us this insight into this other way of doing life. And that is something that I am grateful for, and that part that’s broken if it wasn’t broken wouldn’t have allowed me to interact this way with 250 other stroke survivors around the world since the podcast started.
So it just depends on when you’re using those words, how you’re using them, and how you’re making them, impact you. And if they’re, and I use it as a way to empower me to say, okay, that little bit that’s missing makes it possible for me to have really meaningful and deep conversations with other people that are going through the same thing. And what I’m doing is making a difference to them. And they’re making a difference to me by chatting to me.
And together, we’re gonna get through this. But we’re also going to bring awareness, I suppose, or, or accept the down days as being part of the life of any person, quote, unquote, normal or not. Because even before your stroke, you had really bad days that you couldn’t get up, and you were even doing it to yourself, right, where you were drinking too much. And then you’d have to deal with a hangover the next day. We do that to ourselves, regardless of whether or not we’ve had a stroke. So you’re just doing now your, quote, unquote, bad days is just happening through a different source or cause or that makes sense?
Suzzane E. 36:26
Yeah, I think it’s interesting. Like I think I’m trying to think how to word this. I think the areas that I’m still working on improving. You know, I think that they’ve made me a more empathetic person. It’s made me more open. It’s made me less judgmental, it’s made me more caring. It’s made me more loving, I think, towards other people. I feel like, I think sometimes after traumatic experiences, people can harden. And I felt like my heart just turned to mush. Like, I felt so emotional. I felt like I couldn’t. Yeah, I didn’t, I didn’t. I didn’t expect to feel that way. To everything around me, you know, it just felt like, yeah, everything was so intense.
Bill Gasiamis 37:19
You can’t ignore it anymore. You could have put it on the shelf before ignoring it, pretending it wasn’t talking to you. It wasn’t giving you any feedback, you know, you could consciously block out what the heart was saying and what it was doing. Whereas now, the head is offline. So the hearts going, huh, here’s my opportunity. I’m coming up, and I’m going to tell you what you need to hear baby.
Suzzane E. 37:42
Yeah. And I was also like, you know, I had to, like, learn how to sit with the sadness and the grief of having a stroke and what that you know, meant for me at the time, but I think you can’t like you can’t selectively numb emotion emotions, like you can’t shut off grief without also shutting off like joy and love in your life. So I think for a while I just been like, doing that I just been shutting it off, just kind of going about my day to day. And then after this happened, like I finally had to process a lot of the sadness from the stroke, but also from stuff that happened prior. And I think it allowed me to also like, feel joy in my life in a deeper sense, I feel like I have a different appreciation for things. Now.
Bill Gasiamis 38:31
That’s probably one of the most profound statements I’ve heard in all the podcast interviews that I’ve done. That’s the statement that you made, that you can’t just independently shut off different emotions and not impact other ones.
Suzzane E. 38:47
I heard it on I heard it somewhere. I didn’t create it myself.
Bill Gasiamis 38:50
That’s okay. Everything we’ve ever said, we’ve heard somewhere else, it’s all good. But it’s just a profound statement that you’ve made. I completely agree with that. Because that’s what a lot of people do, is they might have an emotional, hurt or pain or suffering from the rest of parts of their life that is in the past. And what they do is they try to compartmentalize it, put it aside, try and push it away instead of dealing with it.
And then it takes away everything else from their life. And it makes them unhappy. And it makes them unable to experience joy and happiness and all these other things. Because joy and happiness is an emotion of the heart as well. It’s if you can’t access it you if you put a wall around your heart, well then you can’t access all the other stuff that’s in there that’s going to make life worth living.
And that’s kind of that leads to one of my things that I say forever, which is that stroke recovery is a three-pronged approach. It’s a head, heart and physical recovery. You have to do the emotional work. You have to do this psychological work and you have to do the physical work. And do you feel now that you have this ability to understand that you’ve got to attend to your emotions, that that’s supporting your stroke recovery, your physical recovery, and your mental recovery?
Suzzane E. 40:19
Absolutely, yeah. I mean, I feel like I feel like without, like, tending to, like the emotional recovery, you know, it just felt like I was just like, still living in that moment of fear when everything happened. You know, because I, sorry, I lost my train of thought.
Bill Gasiamis 40:46
I was asking about how tending to your emotional recovery and being able to go there has helped you with your physical and mental recovery after the stroke.
Suzzane E. 40:59
Yeah, 100%. You know, I think that once I was able to start like processing what had happened, I was able to, I think, put the energy that I was putting into just like, just trying to get by, I was able to put that energy back into my recovery, whether it was like a physical aspect or like cognitive aspect, I felt like on the physical side of it, I was pretty fortunate to not have that many physical deficits after the stroke, but I had a lot of cognitive things that I was struggling with, like my ability to use language, and writing and reading. And I felt like that was hard. And I, in some ways, like, felt like at times, I was only focusing on one, but I wasn’t being that successful at it. And it wasn’t until I would like, to look at all three aspects together that I was able to see improvement.
Bill Gasiamis 42:06
Yeah, it’s really important to focus on your wins and see what you’ve done. Either, even if it’s minor, because it’s uplifting and helps you feel better about yourself. And it just shows there is progress. And that you’re getting to the other side, whatever the other side is, or wherever it is, and whatever it looks like. But I think movement in any direction, kind of forward, whether you have to take a back movement, or a side movement, all movement, and that’s the key here is this the keep going and every bump as it comes along.
Suzzane E. 42:44
It hasn’t been linear. I feel like there are some days where I have some symptoms that are like, they’re worse than others. Like if I get really tired, I notice that things kind of come back and resurface. Or if I’m fatigued, or like after I exert myself too much. It’s like, it’s just not linear. For me, it’s been, you know, where it’s like, I’ll have a really good day, and then I’ll have, you know, a day where I’m not able to do that. Or I have to take a break. Yeah, I feel like the fatigue has been really hard.
Bill Gasiamis 43:22
When do you notice the fatigue gets worse? Have you seen a pattern that kind of, you’ll become aware of? And then if so, are you starting to get in front of that to know what to do before the fatigue kicks in?
Dealing with post-stroke fatigue
Suzzane E. 43:36
I felt like going at first when I first got home from the inpatient center, everything was so exhausting. I remember that taking a shower would be exhausting. And I would want to take a nap afterward. Or like just basic self-care tasks were exhausting. Or like making myself a meal was exhausting.
Suzzane E. 44:04
Going to the grocery store was exhausting. And then that started to get a little bit more manageable. And then things kind of like I was able to increase my tolerance for things. But going back to work was the biggest challenge for me. I felt like I wasn’t able to. I needed a lot more rest than I think I was able to get so when I had to go back to work. I went back to work full-time.
Suzzane E. 44:36
I wish I had gone back part-time and then increased to full-time. But I didn’t have that option because of my health insurance. And I wish that I’d had the option to go part-time and then full-time because just jumping into full-time. I was so exhausted. I feel like after work I wouldn’t be able to talk to anyone. I would just like to sleep.
Bill Gasiamis 44:59
Yeah, that’s a common thing that happens, I’m going to say, I’m going to use the word mistake. But don’t take it a bad way. The mistake is, that you’ve given it one take. And then you have to do another take. And I did the same thing. I went back to work full-time. But I never, I didn’t go back to my work. So I had a property maintenance business.
Bill Gasiamis 45:26
And that fell by the wayside, and it was kind of bubbling away, but I couldn’t do any work. So I just walked away from everybody, my clients, and everybody, and I just said, Look, I’m done for now. And then I went and worked in an office job. And I hadn’t done an office job for many, many years. And I didn’t realize what an impact monitors noise, people around me lighting, traveling to work and back, I didn’t realize what an impact that would have on me.
Bill Gasiamis 45:55
And I was wasted. And I wasn’t useful even at work. And the only reason I stayed there was because I had a friend of mine, who gave me the job. He was the general manager there who supported me. But nobody else understood why I was so flaky. And even though they knew or had a stroke, they couldn’t understand how it was so unproductive.
Suzzane E. 46:21
Yeah, I felt like, so a little background about what I do for work. I am a medical receptionist at an urgent care. And I’ve been a medical receptionist for like, a few years now. So it was the job, I had pre-stroke. And then that’s the job I returned to. And, you know, I felt pretty competent at my job before this.
Suzzane E. 46:45
And I had been doing it for a while I kind of knew what to expect. And then afterward, it was just like, everything was hard like typing was hard looking at screens was hard. I remember my coworkers were understanding a lot of them knew what happened. And were supportive and had luckily, like a lot of them some knowledge about the effects of stroke.
Suzzane E. 47:12
Because I worked in a medical setting. But I felt like when patients would come in because I don’t look like I had a stroke. No one would know unless I told them patients would get impatient with me when I would ask them to repeat something. Or if I would make a mistake, it was really hard. I felt like people, my co-workers were patient and supportive. But I felt like any customer-facing job. People are kind of ruthless, sometimes.
Bill Gasiamis 47:47
Customer service is so important. You have to be on your game all the time. Even though I know I’ve been in customer service roles before and I know what it’s about. And sometimes you’re not on your game. But we’ve created such a customer service-focused world where it’s all about the customer experience. That the customer has high expectations.
Suzzane E. 48:14
Yeah. And also, to be fair, like, there’s been so many people that came into where I work that was so nice. And so patient with me. And I had like a lovely time talking to them, and it’s far and between that people would be really impatient and sometimes upset with me. But yeah it did stick out to me.
Bill Gasiamis 48:36
They’re probably having one of the worst days of their life as well. They’re probably sick, they’re coming to a medical facility. You know, they just need stuff done, and they need to be fixed and they need to feel better. And they probably got work to go back to who knows what’s going on? It’s legitimate, that they’re impatient. It’s not nice when you’re on the receiving end of it.
Suzzane E. 48:58
Yeah, that’s the thing is like I understood, you know, I understand that it’s like people wanted you know, I think in some ways, I was ready to go back to work. But in other ways, I wasn’t at first now I feel like I’ve gotten a better handle on things. But at first I just didn’t feel competent at my job.
Knowing your limits
Bill Gasiamis 49:21
Was even though you kind of overdid it by going back full time and it wasn’t necessarily in your control. Do you feel like pushing yourself a little further than where your comfort zone was helped you kind of get better than you were? You know that little push ourselves and can go beyond where we go beyond our limit. And then we can go ah, oh my gosh, I’m crashing but I know now where my limit is and I know how to approach it more gingerly. Did you experience that?
Suzzane E. 50:00
Yeah, I noticed really big improvements with my typing, and my processing speed, like right away because I was just, it was this repetitive tasks that I was doing every day. And I feel like before going back to work, I would work on it with like the occupational therapists that I was with, and we would do it but like, you know, it wasn’t the whole day, it would be like an hour that we would work on something together.
Suzzane E. 50:28
And then all of a sudden, when you’re kind of thrown in, it’s like, you have to, you don’t have another choice. So I felt like I do, you know, I felt like I saw a big improvement in my recovery after going back to work, even if it was exhausting.
Bill Gasiamis 50:48
So it sounds like a little bit of intense therapy at the same time.
Suzzane E. 50:51
Yeah, it felt like a boot camp for recovery.
Bill Gasiamis 50:55
Yeah. Okay. So not necessarily fully competent at work, but doing a good job in recovering motor skills, and increasing your tolerance to fatigue and all that kind of stuff.
Suzzane E. 51:08
And now I feel fully competent. And now I feel like I’ve gotten like a good handle on things. And I feel like I’m way more capable of doing my job the way I want to do it. But yeah, it was really hard to go back at first.
Bill Gasiamis 51:26
Yeah. You know, the days when you’re feeling a little bit down, low fatigue, etc. What, what’s kind of the, how does that come about? So for me, having a bad night’s sleep, even now, 11 years out, will mean that my morning is a lot harder than than it needs to be.
Bill Gasiamis 51:50
But sometimes I didn’t cause the lack of sleep that particular night, something happened and I woke up, I couldn’t get back to sleep. So what do you feel contributes to you having a bad day? Do you have any things that you know, definitely contribute to you having a bad day, the next day, or the day after?
Suzzane E. 52:11
Yeah, I felt like, when I would over-exert myself, I would notice like the next day, it was just so much fatigue, I felt like I wanted to push myself to kind of go back to like, my old life before this, and I would still want to hang out with my friends. And I would, I would want to go out and I would want to go do things.
Suzzane E. 52:34
And I remember like the first time I tried to go to a concert, post-stroke, and I was so tired. The next day, it took me about two days to just like lay in bed and recover because I was so exhausted. Or like I would want to go out with my friends and I just, I couldn’t keep up or I would just be so exhausted, I’d have to go home early or so I noticed that was a big trigger for like me feeling low the next day.
Suzzane E. 53:04
Even though I think like emotionally, it’s good to connect with other people. I had to adjust the settings I was able to do it in. And then if I have like days at work where I’m working days in a row, I’ll notice that like I need a day off to recover. If I don’t sleep well, I notice that too.
Bill Gasiamis 53:26
Yeah, the concert thing’s interesting because I had a couple of opportunities to attend some concerts. And I didn’t go on purpose. Because I felt like as much as I’d love to go to the concert, I’d be paying the price for a couple of days later.
Suzzane E. 53:43
That’s exactly how I felt.
Dealing with sensory overload

Bill Gasiamis 53:45
But then I felt at some stage I got to the point well, I’m prepared to pay the price to go and see that particular artist for example, because I’m gonna have a great time there. Even though when I leave there, I’ll be tired and overwhelmed. Because there’ll be too much noise too much light, you know, and, and I’ll have sensory overload it’ll still be worth the experience because I can at least say I saw my favorite artists live one time, you know.
Bill Gasiamis 54:15
So there was that and then that also meant that I was finding ways to get out of going to the football when people would invite me or to other sports and you’d be probably in this two hours of sitting and screaming at the umpire or the referee about a decision they made is going to be difficult for me to come away from feeling okay about and you know, it’s never watching sport on TV, for example, is you sit on your couch, you watch TV, and then you’re at home magically when the game’s over.
Suzzane E. 54:50
Yeah, and you can kind of remove any sensory information when you feel comfortable with it. I had so many issues with like sensory overload and overwhelm I still do.
Bill Gasiamis 55:01
You guys at your place share the space with regards to the lighting, television, and all that kind of thing because with my wife, we are now this we’re in two different worlds, I’ve got to have no lights overhead on pretty much all at night, I’ve got to just put on lamps.
Bill Gasiamis 55:21
And she likes to have a brightly lit room. So she’s got to deal with my lack of lighting. And the volume is a weird thing because she doesn’t mind having the volume a little bit loud. And I tried to have it a little bit lower because it overwhelmed me. So do you guys navigate that sort of stuff in your place?
Suzzane E. 55:42
Yeah, I mean, it was it was hard at first, I feel like early on, like I couldn’t tolerate bright lights at all. So I would always want to turn off all the lights in the house, where I’d want to have dim lighting. And I would want to be quiet. And I would want to, you know, close the blinds all the time. And I remember sometimes where it’d be like, I can’t see it so dark in here.
Suzzane E. 56:05
Like, can we just turn on one light, and it’s but she was she was a really good sport. I feel like she compromised on my behalf when it came to like the lighting and the sound. But yeah, it was it was it was a big adjustment. I felt like I had my own space in the house that we live in, like I have my room and I have privacy.
Suzzane E. 56:30
So it was really important for me just to have like, a space where I could go, and there wouldn’t be anything overwhelming. And so that was my room, where it’s like I could go to my room, I wouldn’t have any noise in my room, I could turn off the lights, or I could make the lights dim. And like if anything was stressful in the outside world. Like I needed a place where I could go, where it wasn’t.
Bill Gasiamis 56:53
Where you can retreat.
Suzzane E. 56:55
And recharge yeah.
Bill Gasiamis 56:58
That’s me. At night, in the, in my bedroom, there’s the dumbest of dim lights, where you can hardly see in there, but it’s enough to it’s enough, it’s enough to be lit. So that it’s not, I mean, they need sleep time, it’s that, that moment when you’re in your bedroom, getting ready for bed, but you don’t want it to be dark, you need a little bit of lighting around there.
Bill Gasiamis 57:30
Whatever you’re doing, you know, so there’s this the dimmest of dim lights. And it’s a really quiet room. I’ll just go down there and lay for about sometimes 30 minutes an hour before I switch the light off and roll over and doze off.
Bill Gasiamis 57:46
My wife usually comes to bed a little later than me. Or maybe I go to bed a little earlier than I used to. And therefore I get to have that one half an hour to one hour time to kind of unwind before bed. Does that make sense?
Suzzane E. 58:05
Yeah, yeah, I feel like that’s important for me, too. It’s funny that we’re talking about lighting because I have an overhead light in my room right now. And I like rarely turn it on. But I turned it on for this podcast, so you could see the screen. But I always have a lamp on instead.
Bill Gasiamis 58:23
Yeah, I appreciate that. And me too so in front of me, there’s a light right on top of my monitor. Two monitors are a light right in front of me. And as you can see, as I do that it’s shining right into my eyeballs there. And then there’s another one to my left. And you can see that when I do that, it’s which part of me it’s lighting.
Bill Gasiamis 58:46
But if you look on, if you look on YouTube, the best way to light, a recording studio, or a room when you’re doing a podcast, this is how they tell you to do it and if you don’t do like this, you’re not doing it properly. So it’s, I recorded another podcast episode just before this an hour before our recording I recorded another one.
Bill Gasiamis 59:08
So this is going to be our two in three hours that I’m recording two episodes, and it’s too much and I can feel that like I’m burning and etching something into my brain. I could feel it. And I can feel this one. And I don’t know if that’s weird. But I experience life differently. I experience it physically, I can feel the light. And that’s not a warm light. That’s like an LED the most pathetic little excuse for a light you’ve ever seen but I can feel its impact as if I was outside and the sun was shining on my body.
Suzzane E. 59:52
I feel like I hit a wall sometimes like with the sensory input. Just where like if things are too loud or too bright? Or, like I just feel like I shut down sometimes still.
The hardest thing about stroke – Suzzane E.
Bill Gasiamis 1:00:05
Yeah. As we come to the end of this episode, I want to ask you a couple of questions. Maybe you can answer maybe you can’t, but I just want to get your thoughts on it. What’s the hardest thing about the stroke?
Suzzane E. 1:00:19
I think the hardest thing, which also, I think you can look at it two different ways, the hardest thing, I think I felt so alone and isolated. And I’ll circle back to the other part of what I was gonna say here, but I didn’t know anyone that was my age that had a stroke.
Suzzane E. 1:00:42
I felt like all of the recovery information I heard about was typically at people in different stages of life than me and I didn’t know how to adapt it for my own life. And it was just, it was terrifying. It felt lonely and isolating.
Suzzane E. 1:00:59
And, you know, I think, for me, that was the hardest part to grapple with, like immense sadness, that like I was just alone in this experience. But then on the flip side, I think because I’ve had a stroke, I’ve been able to find so many experiences, like talking to other people that have had experiences like mine.
Suzzane E. 1:01:24
You know, I found your podcast through my endless Google searches about young stroke survivors, stroke survivors podcasts, and stroke survivor books, I try to find just any information I can about it, because I think I felt so alone and isolated, and I didn’t find any information at first.
Suzzane E. 1:01:49
But the more I’ve kind of gone through this recovery process, the more I found a connection through this experience, just like with what you were saying, how we get the chance to talk to each other.
Suzzane E. 1:02:02
I’ve been able to talk to other people who have had traumatic brain injuries that are around my age and share those experiences. And I think that’s also a gift. And then I hope that like me sharing my experience, someone will feel less alone.
Bill Gasiamis 1:02:19
Yeah, that’s great. Tell me about it. So you might have kind of alluded to this in the last answer. But what has stroke taught you?
Suzzane E. 1:02:32
Taught me, that I’m resilient.
Suzzane E. 1:02:40
It’s taught me that a lot of the things I thought mattered, didn’t matter. And a lot of the things I wasn’t giving enough time and energy to, how important they are. I think I took a lot of people in my life for granted, and things in my life for granted because I just thought that they were always going to be there.
Suzzane E. 1:03:00
And I feel like a really big level of appreciation for my loved ones, and my life. And I feel like if I go on a walk, and it’s sunny outside, and just like being able to walk is fantastic, phenomenal. And I feel so lucky to be able to do that. You know that that feels like a gift now.
Bill Gasiamis 1:03:24
Yeah, I have a coaching client who is just being able to go to his favorite beach location, even in his wheelchair, which he hasn’t been able to do for four months, because he had a terrible experience with a stroke. And then he’s in recovery, and they’ve just got home, but he felt isolated and stuck inside the house, right?
Bill Gasiamis 1:03:45
Just being able to work with him and his partner to just get them to work out how they could get to the beach, even if it was for just half an hour or whatever, was a big win. It made a big difference to how he felt emotionally, just being able to experience some simple joys, right?
Bill Gasiamis 1:04:08
That’s kind of what you’re saying. The final question is, what would you like to tell other people who are listening that are going through what we’ve been through? Would you like to leave them with maybe a word of wisdom, thoughts of wisdom, or just anything at all? What would you like to tell them?
Suzzane E. 1:04:31
I think for people that have gone through something similar, just that it does get better. You know, recovery looks different for everyone.
Suzzane E. 1:04:45
I know that there are so many different forms of recovery that you can have post-stroke, but if you keep giving it time, it felt hopeless at first for me, but it gets better.
Suzzane E. 1:05:01
I think that’s something I would want to tell people, that’s something I would want to hear myself. And then for people that maybe haven’t experienced the stroke, you never know what someone else is experiencing.
Suzzane E. 1:05:17
And that goes way beyond just a traumatic brain injury or stroke. Like we don’t know other people’s lives. We don’t know what they’ve experienced, what they’ve been through. So I think just having patience with people and empathy.
Bill Gasiamis 1:05:31
Yeah, really lovely words, I think I agree with that. One of the things I’m grateful for is the fact that now I know what other people are going through. And I’ve said it before, in a few episodes, that when I saw somebody in a wheelchair, I just assumed they were sitting down. And that didn’t mean much to me. But it’s just, I got to spend, say, three or four weeks in a wheelchair.
Bill Gasiamis 1:05:58
And I learned deeply and very, very rapidly that I wasn’t just sitting down, that I was dealing with a whole bunch of shit that I had to come to terms with as well as the fact that I had to be in a wheelchair, that I couldn’t walk anymore, and somebody had to help me get around in the beginning.
Bill Gasiamis 1:06:19
And, yeah, that ability to empathize and see what’s going on for other people because of my experience, has been probably one of the more eye-opening parts of this, and I’m so glad I’m not that ignorant anymore.
Bill Gasiamis 1:06:45
I’m not as ignorant as I was, and I’m okay with the fact that I was ignorant in that. You’ve never been through it. So how can you possibly know? But the fact that I’ve learned that, I can relate to what you’re saying. It’s really helpful.
Suzzane E. 1:07:02
Yeah, that’s a gift I’ve taken from this experience as well.
Bill Gasiamis 1:07:10
Suzanne, thank you so much for reaching out. And being on the show. I appreciated our chat and I think a lot of people will get a lot out of listening to your story.
Suzzane E. 1:07:20
Thank you for having me.
Bill Gasiamis 1:07:22
Thanks for joining us on today’s episode. To learn more about Suzanne and to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you’d like to try the course Five Foods to Avoid after Stroke, go to recoveryafterstroke.com/courses to get on board now.
Bill Gasiamis 1:07:43
If you have been listening for a while and love this podcast, please help the podcast reach more stroke survivors by leaving the show, a five-star review, and a few words about what the show means to you on iTunes and Spotify. If you’re watching on YouTube, comment below the video. Like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice.
Bill Gasiamis 1:08:07
Any interaction with the show boosts the show’s ranking on search engines and that means that more people who need to find the show will and that might make them feel better about their recovery. If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:08:32
All you need to do to qualify is be a stroke survivor. Care for someone who is a stroke survivor or you’re one of the fabulous people who help stroke survivors go to recoveryafterstroke.com/contact and fill out the contact form.
Bill Gasiamis 1:08:47
As soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over Zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.
Intro 1:09:03
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:09:20
All content on this website at any length blog, podcast, or video material controlled by this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing.
Intro 1:09:36
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.
Intro 1:09:48
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 1:09:57
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Intro 1:10:11
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Intro 1:10:27
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The post Neck Trauma And Stroke – Suzzane E. appeared first on Recovery After Stroke.
1 hr 11 min
May 15, 2023 Hyperbaric Oxygen Therapy – Dr. Amir Hadanny

Bill Gasiamis interviews Dr. Amir Hadanny, a renowned hyperbaric medicine specialist. Discover the incredible benefits of hyperbaric oxygen therapy for stroke recovery.
Learn More About Hyperbaric Oxygen Therapy (HBOT)
Dr. Shai Efrati on Hyperbaric Oxygen Therapy: A Game-Changer for Stroke Recovery
Hyperbaric Oxygen Therapy Improves Stroke Deficits
Bud Beucher: From Silent Survivor to Speaking His Truth Again
LinkedIn
Aviv Clinics
01:04 Introduction
03:21 Dr. Amir’s background in hyperbaric oxygen therapy
10:50 Funding a study on hyperbaric medicine
12:11 What is hyperbaric oxygen therapy?
14:13 Risks of having too much oxygen
18:59 What is hyperbaric oxygen therapy for stroke survivors?
24:24 Not everyone can do hyperbaric oxygen therapy
30:47 The proper hyperbaric oxygen therapy procedure
43:32 The four components of the protocol
50:59 The discovery of new blood vessels in the brain
1:05:56 Other field of study of Dr. Amir Hadanny
Dr. Amir Hadanny 0:00
You know, so we knew that hyperbaric medicine or hyperbaric oxygen therapy induces new blood vessels in those diabetic wounds. I’m going to share a slide here, that’s kind of critical to understand.
Dr. Amir Hadanny 0:15
This is a nice slide from the Weitzman Institute in Israel that was recently published. And what it shows, on the left side is how a wound in our leg or in our hand is healing. And on the right side is a wound in our brain, which is a stroke. And, you know, when I grew up, when I got my medical education, people have told me you cannot repair the brain. Nothing can. But we know today that is not true, we can repair the brain.
Intro 0:51
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Introduction – Dr. Amir Hadanny

Bill Gasiamis 1:04
Hello, and welcome to episode 250 of the recovery after stroke podcast. On this episode of the show, we are joined by Dr. Amir Hadanny, a Harvard research fellow in the brain modulation lab to discuss hyperbaric oxygen therapy as an intervention for stroke recovery.
Bill Gasiamis 1:21
Dr. Haddany has a background in neurosurgery and bio informatics, with a particular interest in using machine learning to improve neuromodulation therapies. He has been leading the analysis of factory network mapping project, and will share his insights on how hyperbaric oxygen therapy can benefit stroke patients. We’ll discuss the science behind hyperbaric oxygen therapy and its potential to improve brain function and promote recovery after stroke. Dr. Amir Hadanny, welcome to the podcast.
Dr. Amir Hadanny 2:00
Thanks for having me.
Bill Gasiamis 2:01
My pleasure. Thank you for being here. Now, you’re the work that you do interests me a lot, because I’m a stroke survivor. And the podcast is called Recovery After Stroke Podcast and lots of stroke survivors do listen. And they’re looking for ways to support their recovery and to heal their brain after a stroke.
Bill Gasiamis 2:27
And one of the things that does come up from time to time and it doesn’t seem to be a lot of information about it is the kind of work that you do, which is in the space of oxygen therapy in the hyperbaric setting. And we hear about hyperbaric therapy, and we hear about how a whole bunch of people can get a tank and put it in their house these days.
Bill Gasiamis 2:51
It’s really developed a little further. But there’s still not enough information out there to inform the general stroke survivor, the general public about how beneficial that is, if at all. Now, I know you’re doing some interesting work in that space. Before we talk about that work. Can you give me a bit of a background on you? How you came to be involved in oxygen therapy. Give us a little bit of insight.
Dr. Amir Hadanny’s background in hyperbaric oxygen therapy

Dr. Amir Hadanny 3:19
All right, perfect. So a little bit about myself. So I trained as a neurosurgeon, and continue to do functional neurosurgery. And I also trained as a hyperbaric physician. I have a PhD in bioinformatics and data science, which really makes me a big data nerd.
Dr. Amir Hadanny 3:45
So I’m really all about data. That’s how I practice I have to have data in order to get actual clinical decisions. And the story behind and I guess most of the listeners would ask what does a functional neurosurgeon doing with hyperbaric medicine?
Dr. Amir Hadanny 4:04
And it all came down back in 2008. One of my MD instructors, who started managing a hyperbaric chamber, and I was doing my residency in neurosurgery. And he was treating diabetic patients for non healing wounds. So wounds in the legs for diabetic patients, that’s a common indication for hyperbaric oxygen therapy.
Dr. Amir Hadanny 4:36
And some of them had previous strokes and all of a sudden they reported you know, my speech is getting better. My hand is getting better. My leg is getting better. So he called me up after three patients and I tell him, I don’t know. I’m the skeptical, probably the most skeptical guy on the talk here and probably in the world.
Dr. Amir Hadanny 4:58
I told him no way. I don’t know about this. So after he collected it, several more patients, we decided we need to do a study, we need to do a randomized control study to actually see if there’s anything in this. So we started then I was excited because I wasn’t in my residency, I had patients who suffered from stroke that we treated, we gave them TPA, or thrombectomy, which is the endovascular intervention to try and salvage as much brain tissue as we can.
Dr. Amir Hadanny 5:37
But eventually, as you and your listeners know, there is some disabilities that you remain regardless of the treatment you’re getting. So I was excited that we may offer something else for our survivors. So we got them did randomised control trials.
Dr. Amir Hadanny 5:57
And the results were astonishing. The first study we did was on motor function, neurological function, and quality of life. And what we have shown that all the patients that we selected for this study, and I’ll touch on patient selection a little bit later, got significant improvements in their neurological function, and in their quality of life.
Dr. Amir Hadanny 6:28
And we compare this to a control group that did not receive that. And after the study was done, we crossed them over, meaning that the control group now received the treatment and got our protocol. And they improved just as much as the treated group. So that kind of nailed it down.
Bill Gasiamis 6:50
That makes me smile, because very often you hear in studies, the control group doesn’t get the benefit of the other people in the study, and they usually miss out and it’s a bit of a shame, I love the fact that they got to experience the same protocol. So before we talk about the protocol, and the different things that you discovered, is there a difference between a functional neurosurgeon and a standard neurosurgeon?
Dr. Amir Hadanny 7:24
Yes, yeah. So just to touch back on the last previous point, yeah, I have to touch on that both me and the Professor are really finding it hard on the ethical part that leaving the control group or the placebo group, untreated, so we always try to stick it in, in our health in keys or IRB reviews that we want to treat the control group if it works. So that’s what we usually do.
Dr. Amir Hadanny 7:55
Now the difference between a neurosurgeon and a functional neurosurgeon, so standard neurosurgeon treats trauma, and stroke, and brain tumors. A functional neurosurgeon specializes after that, after he completes that he specializes in functional disorders, such as movement disorder in Parkinson’s, or central tremor, or epilepsy or pain in try to improve the quality of life with different procedures or implementations of devices.
Bill Gasiamis 8:31
Okay, now, at the beginning, you also mentioned your data. So that meant that when you had people going into the hyperbaric oxygen chamber for diabetes, and three of them reported back that the neurological symptoms improved for you. That’s just it’s not real evidence. It’s just anecdotal evidence.
Bill Gasiamis 8:52
But it’s the type of evidence that should make your ears prick up and go, well, this is interesting, at least. And why are these three people reporting that. Is that how that process begins to start to evolve into a proper study? Is it that they came to you? Why is it that you guys hear that information and notice it from a number of people and then say, can we create some kind of study around this? How does it get from anecdotal to actually becoming a proper research thing?
Dr. Amir Hadanny 9:27
Yeah, I think that’s the I think that’s the natural history of science everywhere, right? It starts with a couple of case reports or that people collect data from different areas and then think, Okay, this is worth studying or not, at all at times, it’s by chance.
Dr. Amir Hadanny 9:47
So in our case, we had those three cases. And we looked in the literature to see if anyone else had encountered this we found several more case reports. So we decided Yes, it’s worth to check in, you know, making study conducting a study is really hard. It’s a human study a lot of people are doing, you know, you read it in the paper, this guy is found the cure for cancer, these guys found the cure to Alzheimer’s.
Dr. Amir Hadanny 10:17
And then when you read in line, you see it actually rat studies or mice studies, or pigs or rabbits, or you name the model, doing an animal study is easy. Okay, for two reasons. One, it’s cheaper, it’s easy to get the animals, it’s easy to conduct it when you doing human studies. It’s so complicated, it costs a lot of money. And it’s a lot of effort to get the patient to treat them, follow up with them.
Funding a study on hyperbaric medicine

Dr. Amir Hadanny 10:50
So it’s a big, big thing to do a study and especially in hyperbaric medicine, I think hyperbaric medicine is one of the fields that you don’t have any pharmaceutical company behind it. So there’s no funding, there’s no patent involved in it. So nobody’s going to give you the money to do with no money donated. So it’s really hard to do a study of hyperbaric medicine. So you have to have good anecdotes to persuade you. Okay, this is worthwhile studying that there is maybe something in it.
Bill Gasiamis 11:30
And who funds a study like that? If it’s the pharmaceutical companies are not behind it, is it a private funding? How does it get up?
Dr. Amir Hadanny 11:40
So usually, we go to the funds from the government and different scientific groups or private donations or the hospital funds, usually it’s the hospital investigations funds that help us to do it.
Bill Gasiamis 12:00
Awesome. Let’s get stuck into it tell me a little bit about this first, journey into hyperbaric oxygen therapy for stroke survivors. Tell me a little bit about that.
What is hyperbaric oxygen therapy

Dr. Amir Hadanny 12:11
Okay, I think that maybe we can start at what is hyperbaric oxygen, I don’t know, if you’ve covered it in previous podcasts.
Bill Gasiamis 12:20
Probably not, that’s a good place to start.
Dr. Amir Hadanny 12:24
Okay, so let’s go back to the concept of what’s going on. So we’re talking about a metal cage or a box or a room that’s built from pure metal. And people go inside of it, closing the door, and then we’re compressing air in it. So because it’s built with metal, the pressure inside of it goes higher and higher and higher.
Dr. Amir Hadanny 12:52
And then when we reach a certain level of pressure, each patient is given a mask, and he or she breathes 100% Oxygen. And then what it does, it basically increases the level of oxygen to a very high level that you cannot get with just a regular mask.
Dr. Amir Hadanny 13:19
People may ask when I have oxygen in the hospital, or an oxygen tank when I’m diving, but when they do it under pressure, you’re able to dissolve much more oxygen molecules in the blood, and then in the tissues in eventually in your brain. And we’re talking about 20 to 30 times more than what we have currently.
Dr. Amir Hadanny 13:44
So that’s kind of how it starts what’s going on when you’re being exposed to it. But the more critical part of it is, what happens if you do it repeatedly. So if you’re doing it over and over and over again on a daily basis, that’s when the therapeutic processes actually occur. And we can drill down to that a bit later if you’d like.
Risks of having too much oxygen
Bill Gasiamis 14:13
Yeah. Now, is oxygen always good for you? I’ve heard that oxygen can be bad for the brain as well. Too much oxygen in certain scenarios can be bad for the brain. Is that right?
Dr. Amir Hadanny 14:27
So obviously, if you have an acute event, let’s say an acute stroke or an acute myocardial infarction, on the first day or the second day of the event, usually you don’t want too much oxygen because when the damage is happening right on the moment the damage is happening. If you have too much oxygen, you can create some oxidants right you know about antioxidants obviously.
Dr. Amir Hadanny 14:58
But too much oxygen can cause oxidants and increase the injury actually. So you don’t want to have high oxygen at the moment of the injury. But let’s say several days afterwards, no problem, there isn’t really an issue of too much oxygen.
Dr. Amir Hadanny 15:18
However, you need to know how to do it, definitely, there are certain protocols, that if you’re going to get out of them or breach them, they can be toxic. If you’re getting to a very high level of oxygen, let’s say five atmosphere for atmospheres of pressure. If you’re trying to give oxygen you can cause oxygen toxicity, so definitely, you need to do it by a professional protocol.
Dr. Amir Hadanny 15:50
And know what are the limits of safe oxygen. If you breach them, you can hurt your lungs and hurt your brain. Lungs can deteriorate in pulmonary functions. And brain can actually cause seizures. So definitely there is something that’s called too much oxygen. So one of them if you’re doing it right in the event itself, but two if you’re doing unsafe protocols, you have to know what protocols you’re doing.
Bill Gasiamis 16:22
Is that a risk of people having an oxygen chamber in their home?
Dr. Amir Hadanny 16:29
Yes, definitely. That’s a big no, no, on my behalf, I think doing oxygen therapy at home is unsafe. For several reasons, one, yes, you can actually cause oxygen toxicity. If the chamber can actually get to those levels. And obviously, if something goes wrong, and you’re alone, there’s nobody that’s gonna save you.
Dr. Amir Hadanny 16:59
And unfortunately, there have been accidents and those kinds of sacs are chambers. So you know, even a spark caught fire and then, we’re not just dealing with a stroke survivor. So that’s on one end. But the more problematic side of this is that efficacy.
Dr. Amir Hadanny 17:26
A lot of people go in to those chambers or sacs and doing okay, I’ll do something. But they’re not following any protocol that has been studied they’d just go “Oxygen is good for you, let’s go in.” That’s not how it’s done. You can consider oxygen therapy, just like any other drug, it’s not like you will go into CVS right now and say I’ll take this drug every now and then right, you need to be prescribed a certain protocol, and you need to do it at the right timing, at the right amount, right pressure.
Dr. Amir Hadanny 18:03
And if you’re not doing this, nobody knows if it’s effective or not. So it’s kind of taking medicine to your own hands, which I really don’t like, if you want to do it, if you want to do oxygen therapy, do it with a professional and do it in the right way. With the right protocols that were investigated, improved. In a randomized control trial. That’s what being a data nerd is all about. You have to do based on data and you have to do medicine based on data.
Bill Gasiamis 18:35
Yeah, fair enough. I completely agree. And there is a proliferation of those home tanks, and they cost a lot of money. AUD Australian dollars, they start probably at around $20,000 Australian and then they take up some space in your home, and then you’ve got to get in them and you’ve got to go through that process.
What is hyperbaric oxygen therapy for stroke survivors?
Bill Gasiamis 18:59
I imagine that they become similar to treadmills, everyone buys a treadmill, they put it in their garage, and they start hanging the clothes on it so that the clothes can dry instead of run on it. I imagine it’s something like that, but I’m hoping that it’s starting to get looked at as a more serious medical intervention to help people that have a stroke. Is the field fairly new, or is it a field that has been around for a little while?
Dr. Amir Hadanny 19:36
So hyperbaric oxygen therapy, or hyperbaric medicine is already more than 70, 80 years old. And because it started from diving accidents. The whole field started by treating divers who breached protocols of diving and the only way to help them from their symptoms it’s called decompression sickness is going into a hyperbaric chamber.
Dr. Amir Hadanny 20:04
After that started, people realized we can heal those diabetic wounds or non healing wounds. So that’s been going on again for 50 or 60 years now. But the part for neurological patients neurological indications, including stroke, that’s pretty new.
Dr. Amir Hadanny 20:28
That is something that Professor Friday and myself are leading the investigations and the studies on it and the protocols to do it. Like I said, from 2008, before 2008. No data was there, other than anecdotes? So we took it to the next level of, okay. Let’s actually study this, let’s show what’s going on, do we get benefit from it? And what’s the mechanism behind it? So we talking about anywhere between 13 to 14 years old field, I would consider it rather new. And I think the potential is just getting started.
Bill Gasiamis 21:16
Yeah, 13 to 14 years ago. I mean, it’s very new. I mean, I had my first brain hemorrhage in 2012. And in 2012, podcasts really weren’t a thing yet. You know, the internet was just getting started, there was a lot of lack of information out there, and there was a lack of us, the stroke survivors being able to access that kind of information.
Bill Gasiamis 21:43
So it’s fairly new, I would imagine, but that’s good that, it’s been happening since 2008. I imagine you’ve got some good data by now. You’ve got some proven therapies by now. And you’ve helped a lot of people tell me a little bit about the actual work that you are doing and the things that you’ve discovered.
Dr. Amir Hadanny 22:04
So, like I said, the first study that we’ve done, we tested neurological function, motor function of patients with different neurological deficits. And we showed that we can actually improve motor function, as well as speech function, you know, people who have their areas of speech affected by bleeding or ischemia from the stroke, can lose their ability to talk.
Dr. Amir Hadanny 22:33
So we show that we can regain a lot of those capabilities back. The next study is focused on cognitive function. I don’t know if people know this, but apparently, up to 50% of stroke survivors suffer from cognitive deficits, whether its attention, or memory or processing speed, is slowed down significantly.
Dr. Amir Hadanny 23:04
Because you know, people think about stroke, okay, it’s just his hand or his just in his leg. But a lot of times, it’s all about cognition, that he’s not the same person anymore, he cannot go back to work because his brain doesn’t work the same to us so definitely, we focused on cognitive function.
Dr. Amir Hadanny 23:24
And we showed we are able to improve all the cognitive domains, like I said, memory, attention, executive function, processing, speed, coordination, we can regain a lot of the capabilities that were lost. Afterwards, we wanted to understand, does it matter what type of stroke you got?
Dr. Amir Hadanny 23:50
Obviously, there are different types. There’s ischemic ones when you have closure or clusion of an artery, and you have the hemorrhagic ones, like you mentioned, you had where the artery actually is ruptured. And also, you can have it in different areas of the brain. And you can have it in your dominant side or your non dominant side, we know that most people are their left hemisphere is dominant.
Not everyone can do hyperbaric oxygen therapy
Dr. Amir Hadanny 24:24
So if you have a right stroke, or left stroke, does it matter for our results? So we studied we spent a lot of times studying this and we found for most of it, it does not matter, it does not matter where you had stroke. And the reason for that is how we select patients.
Dr. Amir Hadanny 24:24
And I think that’s the critical part that I want to convey here. A lot of people, they’re doing hyperbaric oxygen therapy, whether they’re doing at home or clinics. The real thing is how you determine if a stroke survivor fits the treatment, if the treatment will actually benefit for it.
Dr. Amir Hadanny 25:11
So you have to do evaluations. So all of our patients go to specific evaluations that include cognitive assessments, physical assessments, and imaging. And in the imaging, we do two specific modalities, we do the MRI, that I’m sure a lot of people know about, which can tell us the anatomy of the brain, where the stroke was, what kind of damage happened there.
Dr. Amir Hadanny 25:46
But then on top of it, we’ll do another assessment called a SPECT scan, SPECT scan measures the function of the brain, or the metabolism of the brain. So we measure on each area of the brain, how much metabolism it works, and how much think about how much glucose it’s eating right now, to determine if this area is completely destroyed, or its normal functioning, or it has very low function that we can restore.
Dr. Amir Hadanny 26:23
So we want to work on areas that have low function, but not completely destroyed. Those are the areas that we can bring back to life or bring back to function. So during our evaluations, we look at the brain and we look, do we have those areas? We call those brain wounds or brain numbers, these areas? If we see them, then we know that, okay, we can improve those areas.
Dr. Amir Hadanny 26:55
But we need to know where are they located? And how do they correlate with the patient’s symptoms? If they’re in areas that if we will regain function, will it help the clinical symptoms. So that’s the evaluation that has to be done has to be done in order to determine if we’re going to help the patient, if that’s being done, appropriately. And if we select the patients, based on their on the imaging pay compared to the symptoms, then it doesn’t matter what type of stroke hemorrhagic is dynamic, and what’s the location of it and dominant and non dominant.
Dr. Amir Hadanny 27:45
All that matters is that you selected it correlated to the symptoms to those low metabolism areas. So again, take home message, patient selection, you have if you’re gonna do hyperbaric oxygen therapy, you have to do it in a place that’s doing evaluation and determines if it’s going to help you or not, not like oh, I’m a stroke survivor, let’s go in, not that.
Bill Gasiamis 28:12
I understand. Okay, so not everyone is going to be a candidate for hyperbaric oxygen therapy.
Dr. Amir Hadanny 28:22
I correct a lot will. Some of the patients are not some of the patients are at the point that it’s not going to work. And when you think about it, that’s how medicine always works. You have a treatment, it works for a significant portion of the patient.
Dr. Amir Hadanny 28:44
But on some it won’t, and you have to do this patient selection, because if you’re going to treat everyone, it’s never going to work. Think about acute stroke. When patients arrive to the hospital either getting a TPA or an endovascular intervention, we do patient selection, not everybody can have those procedures, depending on their time on the imaging on a lot of things, because we cannot do it for everyone. So patient selection for this medical intervention is critical.
Bill Gasiamis 29:17
Yeah, fair enough. Makes complete sense. And that’s kind of one of the issues with getting your own tank, putting it in the house and not having been evaluated by anybody for any reason. You might invest $20,000 in something that provides certain number of risks at home anyway, but then also maybe completely ineffective.
Dr. Amir Hadanny 29:41
Right, completely. It’s, a medical intervention, you have to do it with the professionals. I think people should really understand what they’re doing. It’s taking medicine into their own hands. They shouldn’t do it like like any other intervention, like they wouldn’t do an endovascular intervention on themselves, because they think they just now have a stroke is the same thing. It’s unsafe, and it may be uneffective. And it may be dangerous, so don’t do it.
Bill Gasiamis 30:15
Fair enough. All right. So the disclaimers are out of the way everyone has been forewarned. All right, so then, with the particular study, you guys selected your group, and then And then what happened? How did you go through the process? And, talk me through that.
Dr. Amir Hadanny 30:39
Okay, so are we talking about the study or a flow of a regular patient right now?
The proper hyperbaric oxygen therapy procedure
Bill Gasiamis 30:47
Yeah you take me through the process? I don’t really know. I want to learn you take me through the process. I’m very happy for you to guide the conversation. Yeah, for sure.
Dr. Amir Hadanny 30:56
Sure. So when we evaluate the patient, so patient comes in, and it can be two months after a stroke, or it can be 10 years after a stroke. I always tell patients, we need to do evaluations, I cannot determine if it’s going to help you or not, based on looking at you. Again, I need to do actual medical investigation.
Dr. Amir Hadanny 31:22
So the patient comes in, we see them, we evaluate them, we do a medical intake, we do physical examination, neurological examination. And then we start with a cognitive assessment. So they usually go and sit with a neuropsychologist, they sit in front of a computer and solve these, you know, games, you can call them, but they’re actual cognitive tests.
Dr. Amir Hadanny 31:48
Testing the memory, or their attention and all the cognitive domains. It’s all being done objectively on a computer. And then they meet up with a physical therapist, that again, tests everything, the range of motion and their the growth strength, and the reflexes, everything that we do, and their gait, everything that’s related to their injury, and overall neurological status.
Dr. Amir Hadanny 32:15
Then the patient also goes to the imaging facility where they go and have their MRI. So an MRI, very similar to a CT scan that a lot of the people here know about, lie down in the scanner, makes a lot of noise for 40 minutes or less, maybe 20 minutes, get their brain scan. And then they move to the SPECT scan, which is a very similar machine.
Dr. Amir Hadanny 32:45
Usually we inject some tracer into the veins, and then they’re being scanned about 40 minutes afterwards. Patient goes home, we process the data for about two, three days, we want to make sure we have everything, all evaluations, each professional writes up the report and their summary because we want it to be multidisciplinary. So we meet up the physician, the neuropsychologist, the physical therapist, the dietitian if we think there’s value for diet here.
Dr. Amir Hadanny 33:26
And we talk about what each of us saw and the impression, what was it, and then the physician looks at the imaging. And what we do in the imaging, we have specific algorithms that take the MRI, and put the SPECT on top of it. And then we calculate what we call the anatomical to functional matching. So we want to look at areas like I explained earlier, that are not completely dead, not necrotic. But have low metabolism. those are the areas that we want to take a look at. Can I share my screen? I’m not sure if it’s visual or not.
Bill Gasiamis 34:16
The penumbras right? You can show, so you’re talking about the penumbras. Now before you show anything, are we talking about even in patients that are 10 years post stroke? Could there be penumbras active or able to be rehabilitated?
Dr. Amir Hadanny 34:34
Yes, exactly. That’s the exact thing that we discovered. There’s something that’s called a chronic penumbra. A lot of people know about the acute penumbra that we look in the first couple of hours of the stroke, but we’ve realized that there is a chronic penumbra years after the stroke. And that’s exactly what we’re looking for in the SPECT.
Bill Gasiamis 35:00
Okay, please do feel free to show us some of your images.
Dr. Amir Hadanny 35:07
I’m gonna try and show a case.
Intro 35:10
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 that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 35:34
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 35:54
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.
Dr. Amir Hadanny 36:13
So this is a nice example of what we just talked about. So this is a 62 years old woman who suffered a stroke 14 months before coming to us. So a year and two months before that, she suffered a left side stroke an ischemic stroke, meaning her MCA artery was occluded.
Dr. Amir Hadanny 36:39
And because it’s on the left side, and she’s left side dominant, she suffered from right hemiparesis meaning right weakness in the right side, and aphasia, meaning she was unable to speak. So we did the MRI, and we did the SPECT scan. And what you see on the screen right now on the left side is the baseline SPECT.
Dr. Amir Hadanny 37:07
And, again, this is on top of the MRI scan, this is coregistered. And what we’re looking for here is the level of metabolism or level of function. So yellow is the average activity, red is high activity, green is low metabolism, low function. What we found, we found two specific areas that are low function here, what you see here, I don’t know if you can see my mouse, that’s the motor cortex, area of the motor cortex with low metabolism.
Dr. Amir Hadanny 37:44
And here, this is what we call it the Broca’s area, this is where we generate speech from. Both of these areas, are green meaning low metabolism. When we saw this, we said, okay, there is a logic to do the protocol. So we included her in the protocol that we’re going to discuss in a minute, what is the protocol, and after three months of the protocol, this is proposed scan.
Dr. Amir Hadanny 38:17
So we rescanned the same person afterwards with SPECT, and you see here, the green areas, most of it became yellow, most of the motor cortex, and both in the broca, you see some leftover green, but most of it is yellow, and this correlated with significant improvement in her right hand and her right leg movement, and she regained speech.
Dr. Amir Hadanny 38:46
Again, it was not as perfect as she was before the injury, but she was able to talk. And this is 14 months afterwards. I don’t know if everybody knows this. But basically, when we give the prognosis or we predict what’s going to happen for a stroke survivor, somewhere after the three to six months after the injury, their rehabilitation reaches a plateau. So whatever we regained in those three, six months stops. Here, we show that even 14 months afterwards. We still can regain rehabilitation.
Bill Gasiamis 39:37
That’s great news. I’ll tell you why. It’s great news. Firstly, because people get to the plateau. Doctors don’t do a good job of explaining what the plateau is and what it means. And then people leave hospital thinking that that’s it, no more recovery for them.
Bill Gasiamis 39:55
And that’s a big issue when doctors send people home and they feel like there’s no recovery, then lots of things can go get in the way to prove that there isn’t going to be any more recovery with the patient becomes potentially one of the people that proves the doctors, right. And, and that can be sad if that’s the case.
Bill Gasiamis 40:17
But what I love here is that you’ve actually got imaging for the first, one of the first times I imagine where you’re proving that beyond the plateau, there are numbers that can be rehabilitated in the brain, and therefore, restore function that is fantastic to hear. That is such an amazing thing.
Dr. Amir Hadanny 40:42
Exactly. And that’s the key thing. That’s the key. And that’s how you select patient, you literally understood what we’re talking about it, we want to see those chronic pain numbers, prove that they’re there. And if we find them, and we find them in most of our patients, we find them and they correlate with the symptoms, then we should do the hyperbaric oxygen therapy protocol. That’s exactly.
Bill Gasiamis 41:09
That is amazing. That’s so heartwarming. That’s so good to hear and see to actually visually see that. Now, when you first discover this, do you know what you’re discovered? Do people gather behind you and support you to take this to the next level? How does it get? How does it get up to that next level? Because I imagined in 2008, when all this started, do you guys would have been excited, but were you able to get the rest of the community excited.
Dr. Amir Hadanny 41:44
We’re trying I gotta tell you this is this is a working process. This is a process. And you know, I’m, I’m meeting with neurologists and neurosurgeons day in day out, I need I need to give the same talk and show them everything again, and again. Because even though we published, it’s not out there as much as it should. So it’s slowly getting them. We’re doing our best. But still, good one out there.
Bill Gasiamis 42:20
Good work. So just before we go into the actual protocol, I’m wondering about what you’re actually achieving here. So we hear about Neuroplasticity, and a lot of stroke survivors, it’s one of the first things they hear about when they go into a hospital after they’ve had a stroke. And when they go into rehab for the first time, you get the Neuroplasticity speech. And I think that’s an amazing speech.
Bill Gasiamis 42:45
Because, you know, Neuroplasticity can occur. Simply by imagining yourself walking, you can be creating new neural pathways to support the pathways that are no longer there, or pathways that have been lost so that you can when you go back to therapy, as you begin to walk, you’re enhancing the neural pathways that you’ve just imagined in the past.
Bill Gasiamis 43:10
And then you walk, even if you’re in the stirrups, even if you’re holding on to the bars, even if you’re in your cane or whatever you’re doing. And then what you’re doing is creating new neural pathways to to go around, I suppose for lack of a better medical word from me to go around the old ones, which are no longer working right.
The four components of the protocol
Bill Gasiamis 43:32
Now, in this case, are you re igniting old neurological pathways that were there? Are you bringing cells back to life? Are you like, what are you actually doing to the brain when those Penumbra has rehabilitated? How does it work?
Dr. Amir Hadanny 43:57
So there are four components that we have discovered that by doing our protocols that we’re actually doing. So the first one we’re providing energy to reignite I like that tendency use reignite those areas that were not that. So the necrotic areas, you know, after several months, the areas that suffered from damage beyond repair, they’re dead and there are no cell there.
Dr. Amir Hadanny 44:27
There are no cell there. It’s just water. So on those areas, on water, we cannot work. But those areas with the penumbra, those, those are cells that are alive, but are not friends meaning electricity. They have enough energy to survive, but they’re not doing action potentials that actually transmit data.
Dr. Amir Hadanny 44:52
Those are the areas that we reignite with the high level of oxygen. That’s number one. Number two What we found, we have a specific protocol. And again, we’re going to talk about exactly how we do it. But we’re doing something called oxygen fluctuations, meaning that each time the patient goes in the session, we’re doing several minutes with oxygen several minutes without, with oxygen.
Dr. Amir Hadanny 45:27
Without what it does. It’s something we call oxygen fluctuations. So high levels of oxygen normal level of oxygen, high level of oxygen, normal level of oxygen. What it does is it tricks the brain tricks each cell in our brain to think that it’s suffering from stroke, again, that it’s under stress that it has low level of oxygen.
Dr. Amir Hadanny 45:53
The reason we’re doing this is when the brain feels this, it triggers a specific molecule called one Alpha, our toxic induce factor one Alpha, that’s the trigger for brain repair. And that’s, and we have that in the first three months. That’s why we finish up with the plateau. Because the brain secretes that on its own in the first several months.
Dr. Amir Hadanny 46:21
But then it stops, we are able to force the brain to continue to secrete this molecule, this trigger of brain repair, by just by tweaking this high level normal level, retrieving it to continue repairing itself. That’s number two. And this is critical that we’re doing it on a safe level. Because the other way you could have had it if you I guess cause multiple strokes on yourself or choking, but that’s unsafe. By doing it high level to normal.
Dr. Amir Hadanny 46:58
We’re never in the unsafe areas. And we’re still triggering brain repair. That’s number two. Number three effects that we are able to do is we are we have shown we are recruiting stem cell neural stem cells, we’re actually bringing neural stem cells that can build new nerves in the brain areas that were injured, they’re not building it anywhere. They’re just building it, where the injury happened.
Bill Gasiamis 47:29
I like that I’m gonna interrupt there, you said something really important. You said they’re not building anywhere. So you hear a lot about stem cell therapy. And usually they’re infusions or injections, and they’re not targeted, they just go into any particular place. And it seems like they hope for the best.
Bill Gasiamis 47:47
And that was one of the things that I kind of struggled with when I heard about stem cell therapy. Is that how do you know where the stem cells are going to go? How do you get them to go where you want them to go?
Bill Gasiamis 47:57
So what you’re doing here is by by tricking the brain into thinking that it’s hypoxic, because it’s had that increased boost of oxygen, and then you’ve taken it down to normal levels. It’s going oh, my gosh, we got problems right here, we need to create neural stem cells right here right now in that spot.
Dr. Amir Hadanny 48:24
Exactly. Exactly the thing. You know, I couldn’t have upgraded better. I think a lot of people are injecting stem cells in the spine in their veins, I was even part of a study that, you know, we did it intracranial. So people injected stem cells in the brain itself. It doesn’t work.
Dr. Amir Hadanny 48:47
And you know, every decade, we see another study that people try to do it and it doesn’t work. And the reason it doesn’t work, because these are external stem cells that have no reason to, oh, I’m injected here, okay, I’m going to build something, they don’t have the trigger that I mentioned, and they don’t have the infrastructure to stay there and build it. So they’re just being injected, they’re floating around and die.
Dr. Amir Hadanny 49:15
That’s what happened to the stem cells that are being injected in so many clinics, so many areas. So it’s a shame. I mean, it has good logic, but then again, it doesn’t have good logic. And everyday can people think that they solved it? So far, all these external injections do not work.
Dr. Amir Hadanny 49:38
What we’re doing is we’re using our own energies, meaning our own bodies themselves, flowing to where they’re needed. And the fourth component is also the critical part that people are forgetting the infrastructure themselves will survive. If are being supplied with oxygen and blood, they need something to survive it. They’re not just it’s not like a Petri dish that you put them on.
Dr. Amir Hadanny 50:10
And they’re surviving, they they need something to hold on. So the fourth component of our protocol is inducing blood vessels. So we are building new blood vessels that are being formed in those areas. And again, in the areas that need it, it’s not, we don’t get new blood vessels in our hands.
Dr. Amir Hadanny 50:32
It’s just in those areas, we see that. So the stem cells can actually be supported to build new nerve cells. So in medically or scientifically, it’s called angiogenesis, the generation of new blood vessels and neurogenesis, the creation or generation of new nerve cells. Those are the four facts that we’re actually doing.
The discovery of new blood vessels in the brain

Bill Gasiamis 50:59
New blood vessels. Is that a fairly recent discovery? Is it something that’s been recently understood? Because I didn’t realize that we could increase the number of blood vessels in your brain.
Dr. Amir Hadanny 51:15
So we know about new blood vessels from the wounds, you know, so we knew that hyperbaric medicine or hyperbaric oxygen therapy induces new blood vessels in those diabetic wounds. And I think that the biggest concept and again, I guess I’m gonna share a very slide here, that’s kind of critical to understand.
Dr. Amir Hadanny 51:40
This is a nice slide from the Weitzman Institute in Israel that was recently published. And what it shows, on the left side is how a wound in our leg or in our hand is healing. And on the right side, is a wound in our brain, which is a stroke.
Dr. Amir Hadanny 52:02
And, you know, when I grew up, and when I got my medical education, people have told me, you cannot repair the brain, nothing can. But we know today in this decade, that is, it’s not true, we can repair the brain. And amazingly, it’s really similar. It’s exactly the same concept. So this comparison is beautiful.
Dr. Amir Hadanny 52:27
So the cells names are different. But it’s exactly the thing things happening here. We need vessels, we need the inflammatory cells, we need new nerve cells coming in, all these processes are occurring, exactly the same in the wound in our hand, and in the wound in our brain.
Dr. Amir Hadanny 52:51
And when we understand this, we can supply those four components that I’ve mentioned. So since we knew that in the wounded leg, we are actually getting new blood vessels. We just tested it out in our brains in our stroke. And we showed that we’re also doing the same thing. In our stroke area, we are creating new blood vessels.
Bill Gasiamis 53:18
I love it. Absolutely love it. So what we’re doing is the good thing about seeing this on a wound on the leg is that we get to see the wound heal, we physically get to see heal and close over, but we can see inside the brain under normal circumstances. So that would be invisible.
Bill Gasiamis 53:36
And I imagine when you guys first discovered this in 2008, you know, the people came to you, they said, Oh, we feel better in the head. Our cognition is different. Our stroke symptoms have eased or changed or become better. And that makes sense that you would go well, okay, that doesn’t mean anything to us.
Bill Gasiamis 53:57
Because we saw the wound heal on the leg or on the arm, but we didn’t visually see anything inside the head. So let’s go through the process of proving that by doing the study. I love the way the whole process has worked. And the way you guys think and the way that it’s got like that.
Bill Gasiamis 54:15
Now, what I also love about it is that visual that slide, it makes a real big difference to me. Because when I’m doing stroke recovery, and I get to see, and I get to go through the process of hearing that I’ve reached the plateau. And then by chance, I’ll learn about the penumbra.
Bill Gasiamis 54:37
And now by chance I’ve learned about the pin numbers that persist that are there beyond the plateau that can still be rehabilitated, and then I get to see the proof, the physical proof of a wound healing on somebody’s arm, which confirms that there are blood vessels occurring for regenerating in that particular wound.
Bill Gasiamis 55:03
And then I get to see the same thing in the brain, you’ve got me convinced I’ve understood the whole path, the whole process to get me to the point where I completely, totally understand how we can restore function in the brain in a spot that’s been previously damaged. That’s fabulous.
Dr. Amir Hadanny 55:22
Perfect, perfect. I, I love that. I reached to the crowd and I and people understand this concept, because it’s not it’s not easy to understand. And, you know, I have physicians and neurologists that it takes time for them to drop. But that’s, that’s what we’re trying. And that’s what we’re trying to convey here. And this is great news, like you said,
Bill Gasiamis 55:47
yeah, it is great news. I think neurologists have a different way of thinking about things, I think very simplistically, right? So I don’t need a lot to be convinced. And sometimes that’s the challenge is with stroke survivors, they don’t need a lot to be convinced.
Bill Gasiamis 56:00
They say, here’s something about hyperbaric oxygen therapy, they go by a tank, they put it in their in their house, because the guy who sold it to them, convinced them very easily or very well, that that’s what they needed. So they went and got it right.
Bill Gasiamis 56:14
Whereas I, I might be that way inclined. But this just makes me feel a lot better about the whole thing, and you’re not selling me anything. And that’s even better. So fun. So that’s awesome work. I just love the work that you guys are doing. So that’s the that’s is that the entire protocol. That’s part of the protocol. Right?
Dr. Amir Hadanny 56:37
So So I guess let’s, let’s go back to our journey. So we started with our assessments, right? We did the cognitive we did the physical, we did the imaging, we correlated symptoms with the imaging, we determine that the patient is eligible and will benefit from this.
Dr. Amir Hadanny 56:56
And then he goes through the program, whether the program includes for the program is three months, 60 sessions, five days a week, two hours a day, inside the chamber. And inside the chamber each time, they need to do our protocol, this same protocol that we use in the randomized control trial, I don’t know about different protocols, I know about this one, this one was able to induce those four components.
Dr. Amir Hadanny 57:25
So we do this 60 times, five days a week, two hours a day, we month. And then in usually, on top of that really determine case by case, if we’re going to add cognitive training or physical training on top of the chamber, maximize the efficacy in the trials, we did not use them. We did not use any physical therapy, any cognitive training, because we just wanted to show the hyperbaric oxygen therapy effect.
Dr. Amir Hadanny 58:02
But obviously, when a patient comes in, outside of a clinical study, I want to give him the maximize the maximum effect. So again, the Chamber then I considered do I want to combine it with physical therapy and cognitive training, and maybe a specific diet if I think it’s going to be beneficial.
Dr. Amir Hadanny 58:22
Do this three months. And at the end of the three months, we’ll repeat everything. So we repeat come to function, we repeat physical function assessment, and we repeat the SPECT scan, there’s no need to repeat the MRI scans because we know about anatomy, we want to see about metabolism.
Dr. Amir Hadanny 58:41
So we repeat the specs and like we saw about the lady we saw earlier, repeated and we want to see if we were able to heal those brains, those areas of chronic pain numbers, exactly that.
Bill Gasiamis 58:59
So a 62 year old person is not restricted by age with regards to being able to generate their own stem cells.
Dr. Amir Hadanny 59:07
Nope. We have actually done an aging study. We’ve got an aging study on people over 6070 and 80 years old. And we have shown that we recruiting the number of stem cells just as much as we do on younger people.
Bill Gasiamis 59:26
Wow, that’s good news, too. Yeah. Because it’s because yeah, because it’s often often suggested that people who are older, probably candidates for stem cell injection therapy or something along those lines because of the fact that they are older and because of the fact that they’re less likely to be able to generate growth hormone and other other factors.
Dr. Amir Hadanny 59:59
There on AIM Well, too, in their normal physiology, as we get older, we don’t have the trigger for repair. But if you’re doing the protocol, you’re forcing their body and their brain to induce those triggers, just like in earlier. So it’s true that normal physiology makes an ageing brain to do less repair, but if forcing it to induce the trigger, it will repair itself. Okay.
Bill Gasiamis 1:00:31
So your, your patient has to commit to a fair routine a fair regimen of treatment, five days a week, two hours a day? Are those two hours in the chamber at the same time? Or are they different times? Or
Dr. Amir Hadanny 1:00:53
usually a think we can accommodate it, we’ve, the patient needs to move it here and there, but usually it’s saying they every day, five days a week, two hours
Bill Gasiamis 1:01:04
solid in the chamber? Alright, okay, where does? Where does your work take place, which part of the world.
Dr. Amir Hadanny 1:01:13
So we started in Israel, that’s where we did all the research. And then we started deploying clinics. So we have a clinic in Dubai, in Asia, then a clinic in the United States in Central Florida. Those are the first two clinics and we’re expanding. Next year for more clinics, we’ll have one in New York City, and more to come in.
Dr. Amir Hadanny 1:01:38
Because the goal is to touch the lives of everyone we can in. We haven’t discussed this, but as you know, stroke is the real pandemic. You know, people learn the word pandemic, past three years, but stroke is the real one. You know, it happens every minute, anywhere in the world.
Dr. Amir Hadanny 1:02:03
And there are so many stroke survivors that people don’t even understand how many. So we want to reach out as much as possible, anywhere we can. And to provide them with the high quality protocol that we know that can help them.
Bill Gasiamis 1:02:23
One in four people, I think the World Health Organization’s says that will experience a stroke in their lifetime, it’s dramatic, and a lot of those people, majority of those people end up with some kind of a disability. And it’s a big challenge. Is that particular protocol that you’re able to facilitate people for Is it expensive? How do people pay for that? Is it reliant on their insurance? How do you go about bringing people on board?
Dr. Amir Hadanny 1:02:56
I think that’s the most painful part, at least for me. Right now, it’s not covered by an insurance. So it’s all out of pocket for the patient. It remains a bit expensive, I would say, for a lot of patients we are I think that’s well, I don’t think I know, this is my My life goal to make it true.
Dr. Amir Hadanny 1:03:22
And that’s why I do my studies. We are planning to do more and more research in order to get it approved, you know, medical in order to get a medication or any procedure approved by insurance. He takes a lot of time and a lot of years to get approved.
Dr. Amir Hadanny 1:03:42
We are doing this we are in the process, but it will take many more years until we get we get that approval and signature here the insurance is going to cover it. But that’s what are we doing? That’s what I’m doing. But we’re not voting for the time being. It’s not covered and it’s out of pocket for the patients.
Bill Gasiamis 1:04:03
Yeah. The people who are deploying the clinics in other countries, and then deploying them on the on your behalf. Are they other colleagues that are involved in the research? How does another clinic get set up? Of course, we don’t need another whole process, but like how does somebody get
Bill Gasiamis 1:04:21
a new location gets selected, and then a new clinic established?
Dr. Amir Hadanny 1:04:25
So I’m part of the team of the company that doing those clinics. I’m the chief researcher, and the head of the medical operations. So when we set up a new clinic, it’s being built from ground and we select our physician, I trained them.
Dr. Amir Hadanny 1:04:48
I trained him personally on the protocols and how it’s done and I usually spend time with the physicians in the clinic for several months in order to make Make sure we get high quality protocols and we select the right patients, we do the right treatments, because you know, I am as strict as possible and the quality that we want to deliver. So I personally oversee everything.
Bill Gasiamis 1:05:18
Now, I know I’m a stroke survivor. So it’s my favorite topic to discuss helping stroke survivors. So I love that workbook when I’m on the website at aviv-clinics.com. And I’ll have the links for the website in the show notes.
Bill Gasiamis 1:05:34
I’m noticing there’s a whole bunch of other things that oxygen therapy has helped people with, including PTSD, including people that are 82 years old, helping them to run marathons, including a whole bunch of other things. But the PTSD one really struck me.
Other field of study of Dr. Amir Hadanny
Bill Gasiamis 1:05:56
So again, is that something that was discovered by accident through these types of protocols, and that has expanded into other areas of research? How did these things come about?
Dr. Amir Hadanny 1:06:10
Awesome question. So my other passion as a neurosurgeon, except stroke is traumatic brain injury, which is a very, you know, very, I guess, political or discussed matter. You can get traumatic brain injury from sports, NFL, rugby, or you can get it in the military, from different accidents, different explosion, different events, or even a regular motor vehicle accident. So I treated a lot of traumatic brain injury patients.
Dr. Amir Hadanny 1:06:47
So we saw a lot of them are suffering from different disabilities after the treatment, whether it’s a mild concussion or whether it’s a severe injury. And again, during my residency, after the stroke study was completed, when we understood about chronic penumbra, as we said, we need to understand what’s going on with traumatic brain injury.
Dr. Amir Hadanny 1:07:11
And we basically found the same thing. If you had a traumatic brain injury several years back, we want to see if we find penumbras, we want to see if we find penumbra in your brain, and if so, do they correlate with those symptoms? And if so we can treat them. So we’ve done this, again, several randomized clinical trials, both in adults and in pediatrics.
Dr. Amir Hadanny 1:07:40
And out of that, just to go back to your question. Some of TBI patients suffer from PTSD. And then we got the reports from several of our patients that their PTSD is changing. And I gotta tell you in the first couple of session, it can actually deteriorate, we found out that in first two or three weeks, people are re experiencing things.
Dr. Amir Hadanny 1:08:11
And we had to help them go through those several weeks. And afterwards, they go back into sessions, and they come out differently. And when we realize we can actually affect PTSD, we started a randomized control trials for PTSD. One of them is still running right now in Israel.
Dr. Amir Hadanny 1:08:35
And we’re seeing some nice results, we’re going to publish them, we did the first study on it. Now, we’re reconfirming the evidence we’ve got. So very exciting. And it all comes down to understanding what’s going on in the brain. Doing patient selection based on what we see on brain imaging and the correlation to symptoms.
Dr. Amir Hadanny 1:09:02
If you don’t have it, not going to do anything, you have to actually see the brain and select your patient based on that, regardless of the pathology.
Bill Gasiamis 1:09:14
Dr. Haddany this is a really amazing interview. Thank you so much. I really appreciate it. The information that you shared, I think offers hope, more than anything to the people who are listening and watching. If you’re listening, you definitely need to go to the shownotes. So you can see the slides that we were speaking about.
Bill Gasiamis 1:09:33
And if you’re on YouTube, hopefully you’ve actually seen the slides that we’re talking about because I think they really are picture paints 1000 words, as far as I’m concerned. So they’re really important. I’ll plaster them everywhere and make sure that you guys get to see them.
Bill Gasiamis 1:09:51
I just wish you guys every success in the work that you’re doing. I think it is going to be unbelievably successful. I hope that you guys have clinics all over the world. And I’m looking forward to the first clinic opening in Australia, I might go and visit it myself.
Dr. Amir Hadanny 1:10:11
Thank you so much. Thank you. I’m really hoping to get as much as possible done, and get it all approved and help as many stroke survivors because really, this is a life goal of mine. And we hope to succeed and actually affect people’s life. Do good is our motto.
Bill Gasiamis 1:10:33
Dr. Haddany, thank you for being on the podcast.
Dr. Amir Hadanny 1:10:36
Thank you so much.
Bill Gasiamis 1:10:38
Thank you for joining us on today’s episode, I hope you got a lot out of this particular interview, I certainly did the hope that the work that Dr. Madani is doing and that offers stroke survivors is really truly amazing and groundbreaking.
Bill Gasiamis 1:10:56
They’re talking about things that I’ve never heard before, that is very seldom spoken about these long term spots in the brain that are still kind of low in energy and need some assistance to get back to working in some way shape or form.
Bill Gasiamis 1:11:14
And then hopefully restoring some potentially lost function to stroke survivors, even after many, many years beyond stroke. So the fact that the imaging has gotten to the point where it is enabling people to find these new places these new power numbers that can be rehabilitated is truly amazing, I was really excited to hear the information that Dr. Haddany shared.
Bill Gasiamis 1:11:48
Now if you’d like to learn more about my guests, including links to their social media and other pages, to download a full transcript of the entire interview, please go to recoveryafterstroke.com/episodes. If you would like to try the course five foods to avoid after stroke, go to recoveryafterstroke.com/courses. If you would like to support this podcast, the best way to do it is to leave a five star review.
Bill Gasiamis 1:12:17
This is a really important thing that I would ask anyone listening who has a moment and can can do please do leave the show review because it’s going to make it easier for other stroke survivors like you who needed this type of information, find it easier, and that’s going to make it better on the path to recovery for them. For those who have already left the review. Thank you so much. I really appreciate it.
Bill Gasiamis 1:12:42
It does make a huge difference to how we go through this recovery process. If you leave a few words on iTunes, and Spotify, they’re the best places. Also on YouTube, you can leave a comment below, ask me a question. I’ll respond. I’ll answer your questions. Give the show a thumbs up subscribe.
Bill Gasiamis 1:13:03
Any interaction with any of these podcast episodes just makes a massive difference to the way the search engines make it so that other people can find the show. Now, if you’re 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.
Bill Gasiamis 1:13:24
All you need to do is be a stroke survivor. Here’s somebody who is a stroke who is a stroke survivor, and be one of the amazing people like Dr. Haddany who do work that improves the lives of stroke survivors. It doesn’t matter whether you’re a doctor or an allied health professional.
Bill Gasiamis 1:13:45
Anyone at all, who’s in that space is welcome to join us on the show. Go to recoveryafterstroke.com/contact fill out the contact form. As soon as I receive it. I will respond with more details on how you can choose a time that works for us both to meet over zoom. Thank you for being here and listening. I really appreciate you see you on the next episode.
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1 hr 16 min