Recovery After Stroke

By Recovery After StrokeEducation

Recovery After Stroke episodes

September 25, 2023 Dr. Swathi Kiran – Overcoming Aphasia: New App Improves Access To Therapy
Dr. Swathi Kiran is the Founding Director Of The Centre for Brain Recovery and her research has enabled the development of the constant therapy Aphasia Recovery App.
Rewiring The Brain with Michael Merzenich
Survival Chances After Stroke with Patrik Hutzel
Constant Therapy Website
Center For Brain Recovery
Constant Therapy Signup
Highlights:
01:50 Introduction
02:56 Dr. Swathi Kiran’s background
14:14 Neuroplasticity and stroke recovery with researchers
20:01 The Constant Therapy APP
27:07 Predicting stroke recovery outcomes using AI and machine learning
33:23 Stroke recovery and therapy access
46:46 Recovery and rehabilitation using AI
59:28 Documenting Neuroplasticity
Transcript:
Dr. Swathi Kiran 0:00
Neuroplasticity after a stroke is a thing. And this myth that there is a plateau after which your brain cannot recover is a myth, it’s completely false. The brain can recover, and reorganize function with repeated practice. The scientific community is completely convinced that Neuroplasticity is a thing. What we have not yet fully convinced are the neurologists and the funders, the payers.
Intro 0:36
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:49
Hello once again and welcome to the Recovery after Stroke podcast. If you are a stroke survivor with a story to share about your stroke 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 is be a stroke survivor who wants to share your story in the hope that it will help somebody else who’s going through something similar.
Bill Gasiamis 1:11
If you are a researcher who wants to share the findings of a recent study, or you are looking to recruit people into studies, you may also wish to reach out and be a guest on my show. If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover.
Bill Gasiamis 1:30
There is also a path for you to join me on a sponsored episode of the show. Just go to recoveryafterstroke.com/contact and fill out the contact form, explaining briefly which category you belong to. And I will respond with more details about how we can connect via Zoom.
Introduction – Dr. Kiran Swathi

Bill Gasiamis 1:50
Now this is episode 269. My guest today is Dr. Swathi Kiran, who is the founding director of the Center for Brain Recovery, where the focus is to detect and identify neurological disorders early, understand the mechanisms underlying the disease, evaluate which treatments work for which patients, and enable success in the real world.
Bill Gasiamis 2:15
Dr. Swathi Kiran welcome to the podcast.
Dr. Swathi Kiran 2:19
Hi, there, Bill.
Bill Gasiamis 2:21
It’s really lovely to have you here. Because one of the things that I do that some people don’t know, that I do is every once in a while, I get together with a group of stroke survivors who have aphasia. As somebody who’s a stroke survivor who doesn’t have aphasia, it’s still very difficult and complicated for me to understand how to support people like that and to understand the complex nature of the condition.
Dr. Swathi Kiran’s background
Bill Gasiamis 2:56
And it seems like it’s a really difficult and challenging condition, and probably one of the most challenging conditions because if I’m considering it from my perspective, not being able to have my voice, or the fluidity of my voice, I think would be quite the challenge that I would seriously want to overcome. Tell me a little bit about your background, how you got to be in the role that you’re in, and what your current role is.
Dr. Swathi Kiran 3:32
Bill, my current title is The James and Cecilia Yang professor of neurorehabilitation. I’m also the founding director of the Center for Brain Recovery. So I think both my titles, explain what I do, I study brain recovery, and I’m specifically focused on neurorehabilitation.
Dr. Swathi Kiran 3:59
I’ve been doing this work for the last 25 years or more. And my main goal is to harness what we know about Neuroplasticity, especially after somebody has a stroke. And my area of focus, as you pointed out is to study people who have had a stroke in the left hemisphere, which is the part of the brain that is involved. In language processing. Sometimes you have a stroke in the right hemisphere, but most of the people I work with have had a stroke in the left hemisphere and they end up having aphasia.
Dr. Swathi Kiran 4:39
So over the last 25 years, I’ve spent most of my research work focused on understanding whether we can help people who’ve had a stroke and how well we can capitalize on that both by understanding Neuroplasticity and using data science and machine learning more recently.
Bill Gasiamis 5:03
okay, I just remembered something, my niece is currently studying at Uni, and she’s just decided to go into speech therapy, she’s going to focus her work, on speech therapy. And I said to her, Renee, you know how some people have aphasia? Who can’t speak properly, but they can sing? Why can they sing? But they can’t speak properly? Why can’t we use the singing part of the brain to switch on the talking part of the brain or to transfer Neuroplasticity to that part of the brain?
Bill Gasiamis 5:40
And she came up with an answer, which was that it’s a completely different part of the brain, and it’s on a different side of the brain or some different location from the speech center. And then that is where the difficulty lies, where the challenge is to sort of bridge that gap and convert one part of the brain to a different function or an added function. Is that familiar? Tell me a little bit about that.
Dr. Swathi Kiran 6:10
Well, your build your niece is a very smart person, she, I think, has already learned what is I think the most important thing in terms of the anatomy and the neurophysiology of what the brain can and cannot do as a function of recovery. So she’s right in that the part of the brain that is processing language, like when we’re speaking and coming up with words is in the left hemisphere of the brain. And oftentimes rhythm and melody, and, and music are in other parts of the brain, sometimes the right hemisphere up, but not we don’t know exactly where.
Dr. Swathi Kiran 6:51
Because of this stroke in the left hemisphere, the connections from the left hemisphere, and damaged parts of the other parts of the brain are disrupted. And that’s exactly what your niece also explained correctly that part of Neuroplasticity is rebuilding the connections. But you don’t always get to rebuild connections because you don’t get new neurons to fix the problem. You just have to re you have to do with whatever is left. And in that process. Real Neuroplasticity is limited by the existing connections in the brain. So while singing can help, or melody and tune can help speech production, it depends on what the damage is and how those connections can be rebuilt.
Bill Gasiamis 7:44
In Episode 108, I interviewed Dr. Micheal Merzenich. Who, in the field of Neuroplasticity, I, I asked him once you know, you’re considered to be the godfather of Neuroplasticity, he kind of took that a little bit, you know, oh, well, you know, not other people came before me. And they did. And that’s true. And that’s cool. But he led an amazing team of researchers in the 90s that created the first cochlear implant, and created a whole bunch of work around proving the possibility of sensory substitution, or I think that’s the word where they substitute.
Bill Gasiamis 8:27
For example, the back of the head and the way that they enter the back of the head with a device to send sound to another part of the ears of Ariana another water the part that creates hearing through a different mechanism rather than the eardrum, the ear canal, right. And, when I spoke to him, I specifically asked him about the difficulty of working in that space, when, for hundreds of years, Neuroplasticity wasn’t proven to be a thing. And it was kind of almost frowned upon.
Bill Gasiamis 9:05
And stroke survivors were told, Well, this thing that you have now now that you’re here, you’re probably not gonna get any better, you’re probably not going to walk again. And we still hear that today. There are so many stroke survivors who will get the response from the doctors, or you probably won’t walk again or talk again or do all these things again, only to motivate a lot of stroke survivors to prove them wrong, but some actually, potentially to do what the doctor suggested.
Bill Gasiamis 9:34
When you started your work 25 years ago, how did you deal with the space of the new resurgence of Neuroplasticity and the early stage at which was being used and potentially not accepted? As it is accepted now, how did you deal with that as a person working with Aphasia?
Dr. Swathi Kiran 10:03
That’s an excellent question. As, a very young researcher in this field, I read all of my papers about Neuroplasticity. And it essentially guided the kinds of thinking that I and many other researchers in my space have been trained to think which is different, as you pointed out, I want to say that you’ve answered everything I was going to say was already in your question, but I’ll phrase it differently. Most. Most people were trained to think that Neuroplasticity does not happen in adult life. And some of the early work that you were referring to in the 90s.
Dr. Swathi Kiran 10:45
It sort of made us all think, Wait a second, there is a way for the adult brain to gain some of that Neuroplasticity. And, and every one of us who worked with stroke survivors knew that they were getting better, they were recovering over time. So they have to be Neuroplasticity in the brain. But as you correctly pointed out, I want I think I’ve spent the last 20 to 25 years convincing people, researchers, clinicians, doctors, and patients, that Neuroplasticity after a stroke is a thing. And there’s this myth that there is a plateau after which your brain cannot recover it is a myth.
Dr. Swathi Kiran 11:32
It’s completely false. The brain can recover, and reorganize function with repeated practice, with repeated stimulation and therapy. That’s, that’s what those early studies showed it was about you practice something your brain cells, your neurons learn to read, no, they keep firing, and they reorganize it they collect together. And that’s exactly what happens after a stroke as well. I would say that today, the progress we’ve made so far as the scientific community is completely convinced that Neuroplasticity is a thing because we have several tools at our disposal.
Dr. Swathi Kiran 12:13
Disposal, like new brain imaging, shows that somebody who has had a stroke for 15 years, like yourself you’ve had a stroke for a while, but somebody who’s had a stroke, can continue to show changes and improvements in their brain. What we have not yet fully convinced are the entire the neurologist, and the funders, payers, because I think that is when we would have fun, convinced everybody because I don’t think I don’t think we have to I don’t think I have ever convinced a stroke survivor, they know they can recover over time.
Intro 12:52
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. If this is you, you may be missing out on doing things that could help speed up your recovery.
Intro 13:22
If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you. It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, 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. Swathi Kiran 13:55
So it’s pushing the pushing the work over and over again. Until we can convince payers that even for someone who is 10-15 years after a stroke, they have the potential to recover and they should receive the therapy that’s still work that needs to be done.
Neuroplasticity and stroke recovery with researchers

Bill Gasiamis 14:14
Yeah, thank you for saying that. You know what because a couple of episodes ago, episode 266 I was interviewed by a gentleman who has an organization here in Australia called, called Intensive Care at Home. And what he’s done is push to have people come out of the intensive care ward and transfer the intensive care service to their home where the family is. It solves so many problems but in the beginning of his creation of this intensive care at-home business.
Bill Gasiamis 14:51
He provides intensive care nurses for the patients, whether they are stroke survivors or not No matter how the gentleman’s name is Patrick Hutsul, Patrick related, the situation where, they bring people home and care for them and take away the burden of that hospital bed being taken up by a long term, intensive care patient.
Bill Gasiamis 15:22
And then they make it available for another intensive care patient. But what happens is he’s constantly fighting with insurance companies, because they’re talking about cutting the funding. After all, they use words like plateau, as a tool to stop the funding.
Bill Gasiamis 15:42
They use that as a word that now that you’ve reached here, there’s nothing we can do for you. What we need to do is cut the funding you’re on your own. Well, the reality is, I know and stroke survivors know that the plateau is when the funding should be doubled down on. And I’m not saying that it should be for everybody, I understand that money is not limitless. But it’s when the most focus in rehabilitation needs to begin because the plateau is the sign that if we stop here, we might not progress any further from here.
Dr. Swathi Kiran 16:19
Yeah, you’re, 4,000%, right? And I have made my life and career mission to essentially prove that point as much as I can to change the practice, at least in the US. It’s very, very hard. But it is what I do in my research is to just keep making that point that there is no plateau, as you said, it’s a word that people use to stop funding. So we just need to prove, and show more and more and more data to make that point.
Bill Gasiamis 16:53
Yeah, I love that. I love that there are people like you out there, fighting those battles. For us, it’s so amazing that we are so supported, it doesn’t show it feels lonely, every once in a while you kind of get to this point and go, Oh my gosh, this is so lonely. Nobody understands me, and I’m struggling with my new self by identity, all these things. And you feel like no one is in your corner sometimes. But the reality is so many researchers that are in our corner, you’re a great example of that. And I’m just so grateful for that.
Bill Gasiamis 17:28
And I don’t understand why people like you decide that that’s what you’re going to do for your career. But I know that my niece is that way inclined as well. She wants to go out that direction and support people that she’s never met before. And help them overcome really difficult neurological conditions. And it’s like, oh, my gosh, what a great thing. I’m very grateful for the headset, thank you.
Dr. Swathi Kiran 17:52
It is very gratifying. It’s hard work because every time you think you have the burden to make the proof, the bar is higher, and then you have to reach that burden. But it is very gratifying. As in, you know, you’re making a difference. I do think that at least in the US, as I said, the scientific community does believe that Neuroplasticity is a reality for people who have a stroke. And so not only have we spent the time publishing the work, you know, I do my work. I also work with the National Aphasia Association, I’m on their board, and we make sure everybody knows that information as well. It’s about making sure that you do the work and then making people aware of the implications of that work.
Bill Gasiamis 18:41
Yeah. And then the next phase is applications. How do you guys work in that space? So you have the you create the concept, you work out what the implications of that at? And then is there an applications phase? Do you guys get involved there?
Dr. Swathi Kiran 18:59
In terms of asking me a question more specifically, in terms of.
Bill Gasiamis 19:03
So how do you apply the findings from your learnings, for example, you come up with a concept, you put a whole bunch of research into it, you get some data, and then and then where does the data go? What do you do with the data?
Dr. Swathi Kiran 19:18
Yeah, so there are two ways we have been doing this, I’ll give you the more practical application that that I think we’ve made a difference. And so early on, in my research, and, I would say over the last 15-20 years, it has become very apparent that one of the things that seem to matter for people to get better off to recover after a stroke is getting intensive, sustained repeated therapy, you can get casual occasional therapy that’s not going to help you. And for someone like yourself, who’s shown so much recovery, I’m sure you’ve seen that when you worked hard.
The Constant Therapy APP
Dr. Swathi Kiran 20:01
That’s when you saw the gains. And so that scientific data is very clear that to get the brain, to fire and reorganize, you need lots and lots and lots of practice. So scientific data that is, is precise that the more you practice, the more the brain can reorganize. But the reality in Australia and the US is no patient is getting that much therapy, they’re getting 10 sessions, 20 sessions of therapy, and then they’re told to go home. And then what, what is the potential just basically reduces to almost nothing, because you’re not getting the therapy?
Dr. Swathi Kiran 20:37
So because I knew that was happening, I co-founded a software company called Constant Therapy, which is an app you download. And you can practice therapy at home so that you can get therapy at home, on your phone, or your tablet, practicing the amount of repetition and, and sustained improvements that you need. So patients sit at home, they practice five times a week, 60 minutes a day. And again, we’ve taken that data and published that data showing look, if you practice that much, you can show improvement.
Dr. Swathi Kiran 21:17
So that’s a that’s, that’s something that’s changed people’s ability to change on their own to make their difference. And I’m very happy about that. Because finally, at least in the US people know about it. When patients get discharged from the hospital, the speech-language pathologist tells them, maybe you should practice this when you get home and they go home and they practice. So it’s made a difference that way.
Bill Gasiamis 21:41
Yeah, that’s excellent. So, Constant Therapy is the concept. It’s what the organization’s called. And what specifically does the app do? How do you use the app? Can you give us a bit of an understanding of that?
Dr. Swathi Kiran 21:57
So if you have trouble, if you have if you’ve had a stroke, and you have trouble understanding what people are speaking to you in terms of, you know, giving you instructions, or they’re, they’re telling you things, or you have trouble reading, the app is organized in terms of every domain, comprehension, reading, spelling. And after you download the app, you try things.
Dr. Swathi Kiran 22:26
You try, you sort of test yourself, but in the app, it tells you where your level is. So you have it says you don’t have trouble with understanding, but you have trouble with reading, and it places you on a therapy regimen.
Dr. Swathi Kiran 22:39
And then it uses AI to give you therapy exercises every day and your practice. So if you have trouble understanding sentences, it’ll you keep practicing on the app, it’ll keep telling you sentences, and you have to show how you understand them. As you get better, the sentences get longer, then they become you know, passages as you get better, they become voicemail messages.
Dr. Swathi Kiran 23:04
So it takes you through the therapy, what you have to do is practice it in the app. It’s it’s very good at speech recognition. And you can speak to it and it will recognize what you’re saying. Those are just examples.
Bill Gasiamis 23:19
So that’s fantastic. Because 10 years ago, there was nothing available for people to take home after a stroke that they could use daily to help support their recovery. I remember Michael Merzenich had already back then brain HQ already set up and you could do the brain training games. And I did a fair bit of that. Brain HQ was it was kind of it was the thing that I needed because I could speak could communicate most of the time in my three years of my whole drama.
Bill Gasiamis 23:57
I was able to at least communicate, but cognitively it helped me to develop my my focus and my concentration, I think yeah. And, and it was awesome. But it was the only thing that was out there then. And I love this version of the stuff that you’re doing because it’s using AI and it’s something that a stroke survivor has aphasia can do. And you know what’s best about it is that don’t have to travel if they’re in an isolated location, or if they’re in the middle of nowhere in Australia in the US, and they could just download it and do it all from home.
Dr. Swathi Kiran 24:43
Yeah, exactly. That’s exactly why we developed it. And you know, what’s been a full circle really, is that because we have so many people using the app, we’re now able to take that data Back, analyze that with 1000s and 1000s of users, and then write the same papers that say, Look, this is the kind of practice you need with the hope of changing policy. So in my mind, as a researcher, this is coming full circle, because I need this kind of data to convince payers and funders that you have to change policy.
Bill Gasiamis 25:23
So it’s much easier to also capture the data where in the past, you would have had hundreds of people trying to capture data over many, many years. And then by the time you capture it, 10 years have passed, a decade has passed, and you still haven’t made any massive inroads, whereas now you can also as part of the recruitment process of somebody that’s who has aphasia, to improve their condition. They’re also providing relevant and important data.
Bill Gasiamis 25:24
Yeah, hundreds and 1000s of data points.
Bill Gasiamis 25:56
Yeah. Yeah, that’s fantastic. It’s so exciting. So I might have skipped around my conversation, it just flows out of my head the way that it comes. And when I get excited, it just goes all over the place. But tell me about some of the work that you’re doing now. Who are you working with? Who are you collaborating with? Tell me a little bit about what’s happening right now.
Dr. Swathi Kiran 26:21
Right. So, one of the answers I gave you earlier also was, I think I said, I have spent a lot of time convincing the scientific and clinical community that the brain can recover. And there is Neuroplasticity. So now I’m focused on trying to answer the question. Yes, we know there is Neuroplasticity. Yes, therapy helps people. But do we know which therapy is perfect for the right person? Can we predict for each person? What’s the right therapy for you? Should you be going to an intensive program for six months, like a boot camp?
Predicting stroke recovery outcomes using AI and machine learning

Dr. Swathi Kiran 27:07
Or should you be going to club social club where you get practice? So that’s what I’m focused on right now is helping you predict or prescribe which patient which therapies, are perfect for the right person. And again, that takes a lot of data. But as I said, some of the tools we have available to us are brain imaging tools. So we’re able to see very, very sophisticated and clear pictures of the brain, What part of the brain is damaged? What part of the brain is intact? How are the connections? As you pointed out earlier, how are the connections intact?
Dr. Swathi Kiran 27:42
And how are they affected? How is the brain connectivity set up? So we’re using all that data about the brain to develop models to predict what would be the level of recovery someone’s going to show so you know, just simple things like the more the damage a person’s brain has, and the fewer connections that can make the less recovery, we will, we would probably show, but it’s a bit more nuanced than that as well because we’re able to use these machine learning models to make a precise guess, at how people can expect to recover. So that’s, that’s a prediction. It’s a precision medicine prediction work.
Dr. Swathi Kiran 28:24
So that’s one area of work that uses a lot of brain imaging data, which is hard to do. But we’ve been fortunate to get that data. The other, as I said, is to use AI and machine learning to take people’s behavior and see if we can then also make better estimations of how much therapy somebody needs.
Dr. Swathi Kiran 28:24
What’s the kind of dosage that somebody needs? Again, to come back to making policy decisions of don’t waste somebody’s time telling them that they can only get one day a week of therapy, it’s never going to change their brain or they’re not going to if they want to go back to work if they only receive one session of therapy every three weeks.
Dr. Swathi Kiran 29:07
It’s a waste of resources and effort. So, we’re trying to again, use machine learning and AI, there are two because we have data now, which we did not have 10 years ago, we didn’t have the kind of data we have now to create these algorithms and predictors that say here’s what to expect so so I would say the work that I’m doing right now is a lot about trying to predict the future for, for individual patients.
Bill Gasiamis 29:35
Okay, I like that peer into the hourglass into the glass into the glass ball and see what the future is gonna be. That’s good because that offers hope. If you can predict a positive future, you might not be 100% certain that that’s a positive future for that person, but if you can offer hope towards that they might prove you right. One of the interesting things is when you hear somebody gets one hour a week of speech therapy, it’s almost like, the system is proving themselves correct in saying that funding this particular thing is not going to get results.
Bill Gasiamis 30:20
Because look at the data, we have people who have gone through the program, you know, they didn’t get results, we shouldn’t fund this, we should put our funding somewhere else it feels like the system previously, was all about proving that recovery is not possible is it wasn’t about going, let’s get excited about the possibility of recovery. It was all about. Yeah, we need to stop funding this because it’s probably not going to happen.
Dr. Swathi Kiran 30:49
Right. But then I feel I mean, I’ve been doing this for a long time. And there have been many years where we thought is this even going to make a difference? But I feel optimistic. Now, for two reasons. I feel like were the optimistic phase of this, for two reasons. First of all, I and many other researchers, like myself in this field have access to a lot more data, sophisticated data, good data, and a lot of data. So we can make better conclusions about what’s working and what’s not working. That’s one thing.
Dr. Swathi Kiran 31:26
The second thing, which I think is very important. And I’m curious to see if you have experienced this in Australia as well. But as you pointed out in the introduction, when you have a stroke, and you can’t communicate, it’s extremely difficult and very socially isolating. So most people who have had a stroke and have aphasia, stay home, don’t get out, find themselves isolated, and are lonely and depressed.
Dr. Swathi Kiran 31:54
And until the pandemic, that was just the way those people lived. And only after the pandemic that people realize, if you stay home all the time, and don’t talk to people and socialize, it can affect your mental health, and it can affect who you are.
Dr. Swathi Kiran 32:14
And so I feel like Finally, there’s some acknowledgment of what it’s like for someone to have a stroke and have trouble with communication and socialization, and why we need to do something about it. That’s an awareness that happened, I would say in the last couple of years. And I’m very optimistic for that reason because I think now the world knows what people with Aphasia have faced all these years.
Bill Gasiamis 32:41
Yeah, it is. One thing that is well, as far as I’m concerned, if there’s one thing that came out of that pandemic, is that awareness of the limitations of the way that we go about supporting stroke survivors, for example, it’s all done on-site, it’s all done in a hospital, it’s all done under this particular situation. And now, we can’t. So what have we done? Have we created a two-year setback for all stroke survivors who are recovering? And if we have? Well, we can’t do that? Can we do it another way?
Stroke recovery and therapy access

Bill Gasiamis 33:23
And this is what I love about the fact that you’ve got constant therapy available and possible for people to use at home because, well, no, we’re not limited by travel distance, lockdowns, whatever, I hope there’s never another lockdown.
Bill Gasiamis 33:39
But in Melbourne, Australia, we had two years of lockdowns, and we were locked down for the majority of the time, I would say that, we would have been in some kind of a hard lockdown for at least 12 to 13 months. And then there’s a whole bunch of soft lockdowns, but then accessing the medical system was impossible, you couldn’t access any part of it for anything.
Bill Gasiamis 34:01
And, it felt like what we were doing was creating a situation where we’re putting people setting people back. And from somebody who’s naive, and doesn’t understand anything about epidemiology and doesn’t understand anything about diseases and all that kind of stuff. What I would have thought was, that you guys were trying to save one part. And this is not a political statement. I think you could try to save one part of the community, which I get, and it’s important, but what about my community?
Bill Gasiamis 34:31
The stroke survivors, you know, how do we help them get back to life after stroke and be people who are participating in the community and who are active and who are paying taxes and who are doing all the things that you guys need people to do so that we’re not a complete burden on society, so to speak from a medical and cost perspective, right. So yeah, absolutely are what you’re offering I hope that has never been before. And that’s why, where, and that’s why this podcast exists because I didn’t have the hope that I needed.
Bill Gasiamis 35:11
When I was going through this 12 years ago, 10 years ago, nearly, I needed to find my I needed to create my system. Yeah, yeah, and hope. And I might be able to get this or I might be able to, you know, shrivel up in my home and just sort of forget about life. And that wasn’t an option. So it’s
Dr. Swathi Kiran 35:38
good for doing that. It’s the hardest part that people have had to take us really, because it’s not easy at all. And so you know, really kudos to you for doing this and showing the way for other people.
Bill Gasiamis 35:53
I think it was my survival plan, I had no choice, I had to do something, it was either that or just, you know, shrivel away, you know, it wasn’t going to be a good outcome if I didn’t go this other path. So I try and serve as an example of how people can move forward.
Bill Gasiamis 36:11
Even if they have more deficits than me or they’re worse off than me in some way, we can still move forward. I wanted to ask you about therapists because the therapists that I spoke to were frustrated beyond anything when they couldn’t have people come to see them for therapy, aphasia therapy, or whatever.
Bill Gasiamis 36:35
And it’s kind of like they’re doing, the therapists are doing their job to help rehabilitate people and get this speech back. But it doesn’t seem to be any other part of the scientific community that’s actively involved in supporting them to do that. It’s kind of like they have a little division of some of the work that they do this speech therapists and they do this work.
Bill Gasiamis 36:59
But although there’s the kind of work that you do in the background, there’s very little connection between individual therapists and the scientific community, although I know some speech therapists who are scientists and have and also have therapy organizations. So I know there’s a little bit of connection, but there seems to be also a disconnect. Now, do you guys work specifically, with therapists sharing your findings? And then recruiting from there? How do you involve the therapists in your in your work?
Dr. Swathi Kiran 37:36
Right. So I mean, I understand what you’re saying it is. It is a complicated, sub-optimal place where the average therapist isn’t the regular therapist, I shouldn’t use either of those. Any given therapist in the hospital does not feel the support and the resources necessary because they’re fighting so many different battles. In the US, we try to make sure that our our speech and hearing organization that supports most therapists is aware of the scientific evidence that they need to convince the payers the funders, and their bosses.
Dr. Swathi Kiran 38:23
So the American Speech Language and Hearing Association, makes it its responsibility to translate the research to information that the clinicians can use is a perfect No, but at least that’s there, that’s part of their responsibility is to make sure that if a clinician who sees a patient says where can I go find help for this patient, they need to just go to this website and look up the evidence.
Dr. Swathi Kiran 38:53
And it will give them research evidence. But again, it’s not perfect. And it is, what I worry about the most is it’s not just that the speech therapist is not aware of Neuroplasticity, what they can do to harness that for the patient, and what’s available out there.
Dr. Swathi Kiran 39:16
it’s that the patients themselves the survivors don’t even know what they’re going to get if they stay at it, they’re going to get better they are so this is something that worries me and I am trying to focus some energy on it now. But as soon as you have a stroke, there’s too much going on in your life. You don’t have time to realize what’s ahead of you. You’re just in the mode of survival and get home and stay alive. And after that, especially for people who have aphasia.
Dr. Swathi Kiran 39:48
They don’t even know what the effect of that aphasia is for a long time. That’s why I brought up social isolation and depression. They realize they’re never going to go back to their job because they even sign their name or read instructions. So it’s a it’s a huge period of adjustment.
Dr. Swathi Kiran 40:05
And there’s very little information awareness education that’s been given to the survivor and their family to, to get through that phase in life and know that there’s, there’s hope beyond that, you know, this is something that you’re going to get better.
Dr. Swathi Kiran 40:22
And so that is where I’ve spent a lot of my time and effort more recently is making sure that the survivor knows that, yes, it’s terrible. Today is two weeks after the stroke, it’s, you know, I just need to stay alive. And at six months, yes, I’m still going to get better, I need to keep working at it. I think that is a message, we need to get out as loud as possible.
Bill Gasiamis 40:46
I hear you, I love it. Okay, that’s good, because we get you guys who have the data into the space where you’re talking about the data and the results that you’re finding to directly to the end user, which is what’s happening right now. And then, hopefully, the end user, if the therapist misses the data, or misses the information about what’s possible, the end user can take that information to the therapist and explain to them what they’ve heard or what they know, or what they’ve discovered.
Dr. Swathi Kiran 41:18
Yeah, me just making sure that all the dots are connected, because no, no, no to know that, you know, then it’s not a foolproof process right now. It’s not perfect right now. So we do need to arm the stroke survivor with as much hope and information as possible so that they can go and ask their doctor, or their therapist, Hey, I heard if I heard that, if I keep doing therapy, I can get better. What do you think?
Bill Gasiamis 41:44
Yes, yeah, I love it. And there’s nothing better than motivated patients going to therapy because they have an idea of what’s possible. And then they can go there and really sort of participate wholeheartedly in the therapy so that they can get the outcomes and be excited about therapy.
Dr. Swathi Kiran 42:07
I was gonna ask you, is there an unmotivated patient, a stroke survivor?
Bill Gasiamis 42:13
Oh, heaps.
Dr. Swathi Kiran 42:15
Yeah. Why is that?
Bill Gasiamis 42:17
Well, that’s interesting, because I coach some stroke survivors, and sometimes I coach their caregivers, in conjunction with the stroke survivors, and I feel that some of it is related. And when I coach people, they think that I’m coaching them to get through stroke. But really, what you’re coaching people to do is get through all the limiting beliefs that they’ve always had in their entire life, that are now a real problem because they have a condition that needs a different kind of focus.
Bill Gasiamis 42:48
And sometimes, I also find that stroke survivors are unmotivated because the people around them make them unmotivated. Because they could be surrounded by individuals who would say, oh, you know, why do you want to go to speech therapy? You know, and there’s a lot of ill-conceived ideas about the fact that possible, all stroke survivors would want to approach recovery, like I do.
Bill Gasiamis 43:16
And not many do. Because I might try and model it because identity plays a massive role. So for example, the first thing that I tell my stroke survivors, whom I coached to do when they heal from a brain injury, like a stroke, is to stop eating sugar.
Bill Gasiamis 43:35
Okay, so I’ve nearly died, I’ve had to open my head up, to take a blood vessel out, so that I can survive. Yeah, there are hundreds of 1000s of dollars that have gone into that process. And I don’t know the untold millions of dollars that have made it possible for a doctor to put me on a table, put me to sleep, and open my head.
Bill Gasiamis 43:58
And when they close my head, I’m still alive at the end of it. Right. And then somebody says to me, what you should do is quit sugar to help decrease inflammation in your brain and your body. The inflammation decreases will improve your capacity to recover, and heal, you will decrease the level of fatigue that you’re experiencing, etc.
Bill Gasiamis 44:21
And when I say to them, quit sugar, they’ll come back to me with 1000 reasons why they shouldn’t including You Only Live Once You Know, including including bottom, a sweet tooth. But how am I going to go to the coffee shop with my friends I won’t be able to eat cake. What am I going to do there?
Dr. Swathi Kiran 44:43
Psychosocial barriers and constraints that people go through?
Bill Gasiamis 44:47
Yeah, and alcohol is one of those massive issues. So when I quit alcohol, all my friendship group and I quit alcohol the day that I had the first brain hemorrhage, but all my friendship group said, Well, we’re gonna go to the pub for a drink. And yeah, we’ll go. When we get there, it’s what are you having?
Bill Gasiamis 45:08
I’m having water. I’m gonna have a beer is that alright? Guys? You do what you do, and I’ll do what I do. And we don’t have to do the same thing. And you don’t have to feel uncomfortable with me and not drinking alcohol. If I drink alcohol, I feel like I’m having another stroke. Why the hell would I drink alcohol?
Dr. Swathi Kiran 45:32
These are the kinds of lifestyle changes and psychosocial beliefs that you just have to work through so much even after the stroke, right? Not just before.
Bill Gasiamis 45:44
Yeah, it’s the biggest part of my recovery is changing my identity and fighting the battles so that I could implement my new identity. And nobody else was feeling bad about the fact that I had a new identity. But that meant that I lost friends.
Bill Gasiamis 46:01
So if you’re going to have a stroke survivor, who can’t speak, and he’s going through all these challenges, and they lose friends, because they are different or because their friends can’t associate with them the right way, or their friends are emotionally naive, and can’t have empathy for their friend and support different, it makes such a massive problem.
Bill Gasiamis 46:28
And what that could do for the stroke survivor is not make them unmotivated, because they chose to be unmotivated. But through social isolation, depression, and mental health issues, they could go you know what lifesaver for me, I’m not going down this path.
Recovery and rehabilitation using AI
Bill Gasiamis 46:46
And they come to a therapist for a failure, because insurance is paying for therapy, and then what do they do they just get there with? Is that high for me anyway, I’m just gonna go through the motions for my family. And then once the plateau is reached, and they tell me, I don’t have to come here anymore. I won’t come here anymore.
Dr. Swathi Kiran 47:07
It’s yeah, you’re you’re right. And, in, my research, I see a lot of patients, I’ve seen people on both sides of exactly what you’ve described, I’ve seen the folks that are just trying to adjust to their new identity and fighting hard and doing it. Others have just given up as well.
Bill Gasiamis 47:29
Yeah, look, I would, I would write off my entire friendship group if I had to recover. Not because I want to, but because I come first. And if they can’t come with me, then it’s okay. We, reached our part in life, where we enjoyed each other’s company, and if we have to go a separate way, they can go with my blessing, I have no issues about that. But I have to take it, I can’t be the same me that got me into the trouble that I was in. Now I had a thought in my head that I was born with. But I created the conditions for that.
Bill Gasiamis 48:05
To play up. I was smoking, I was drinking, I was overworking, I was always angry and stressed out. And I was never taken care of myself. So if I continued to be that guy after my recovery, there’s no way you and I would be talking 10 years down the track. Exactly. So I drew the line in the sand, and I became a completely different person. And my biggest task became re-educating the people around me, the ones that didn’t want to be re-educated, so to speak, they’re not around.
Bill Gasiamis 48:43
But that’s okay, I don’t have an issue with that. I have a very different way of seeing things, a very philosophical approach to recovery in life and the rest of it. So I hope that what we’re doing here is giving some of the people listening to it potentially have aphasia or other health conditions related to the stroke. Another way to approach life and to think you know, what, screw this, I’m going to for once in my life, life is short, I’m going to do it my way for once in my life.
Dr. Swathi Kiran 49:11
Yeah. And that is an I mean, again, 4,000% agree with everything you’re saying. I think the only thing I would add to that is as a scientific community, part of a scientific community that wants to help. What we are trying to do is give as many tools in the toolkit to empower the survivor to say, here’s the data that says Neuroplasticity, ism is not a method.
Dr. Swathi Kiran 49:42
It is something that happens. Here are ways for you to get your therapy at home. Here’s the way for you to get engaged. So we’re just trying to empower the person to say, I’m going to take charge of my life and not just give up.
Bill Gasiamis 49:57
Yeah, beautiful, beautiful You’re doing some work at the University of Texas at Austin.
Dr. Swathi Kiran 50:05
That’s my collaborator.
Bill Gasiamis 50:07
Yeah, tell me a little bit about that work.
Dr. Swathi Kiran 50:10
So that’s a very long-standing collaboration I’ve had now for several years, that is a collaboration with a computer scientist Risto McAleenan. He is a well-regarded computer researcher who is, is well-known for building new machine learning AI models. So he was building AI models before AI became a thing he was one of the main people building those sorts of models, very intelligent self-organizing systems.
Dr. Swathi Kiran 50:47
And so what we are doing in that work is we’re developing these neural network models is has become a common term now with other you know, with all this chat GPT AI, people talk about this a lot. But these are neural network models that essentially try to behave like smart brains. And so he is building the computer algorithms and the, you know, AI algorithms, and we’re feeding him the data and the data could be is, is people’s behavior, their therapy recovery.
Dr. Swathi Kiran 51:25
And that’s what the collaboration is, is to use that to take the data and use these very smart, efficient computer algorithms that can be used to predict who’s going to buy the next shoe, but they’re now going to be used to decide who’s going to who’s going to recover, and how. And so that’s a very, you know, these are the perfect kinds of interdisciplinary collaborations because you can use these AI models for health and for good.
Bill Gasiamis 51:56
Good instead of evil. Well, yeah, well,
Dr. Swathi Kiran 51:59
It’s not evil. But in this case, it does make a difference, because you can try to understand why there’s a difference in the data. After all, these computer models are good at trying to find sense, in a lot of noise. So that’s, that’s the expertise he brings, and the collaboration is to try to build sophisticated models of individual patient recoveries.
Bill Gasiamis 52:25
Yeah. So they seem like these guys are a very integral part of constant therapy, it seems to be the other part of this tool that you have available for people is that you guys are doing the data collection, they are doing the processing of that data, they’re using it for creating the models, and then they are combining all of that and putting it onto the platform so that people can access that right.
Dr. Swathi Kiran 52:53
Yeah, so So yeah, even the algorithm in in constant therapy is all very, very smart. Because it’s, it’s constantly learning based on the data that’s being generated as part of people using the software. The UT Austin group is taking that data and trying to build different models, better models, so that we truly understand why people are different when they’re responding to treatment. Some people get better, some people don’t get better.
Dr. Swathi Kiran 53:25
Some people, you know, they take a break, and they come back and they, you know, their motivation helps them get better, so that it’s trying to make sense of that so that we create better models that could eventually be used.
Bill Gasiamis 53:40
Fantastic. Have you seen
Dr. Swathi Kiran 53:43
at Boston University, the team is about 20 people, but the collaboration at UT Austin doesn’t count in that because he has his big team of researchers, as well.
Bill Gasiamis 53:57
Yeah, it’s fascinating. I love that stroke and AI has merged. You know, you hear about these things about AI that, you know, it’s going to do, it’s so fantastic that AI and stroke support and aphasia sport have merged and become a thing. And now, we’re benefiting from that, you know, our community is so desperately in need of real solutions and real support, you know, that’s cost-effective, and that’s easy to access. And that means that we don’t have to travel. One of the hardest things for me was traveling to my three appointments a week, you know, and finding three hours a day just getting to and from, and being at my appointments.
Bill Gasiamis 54:43
At some point becomes difficult, especially with a stroke brain to navigate that and have that and it keeps you in a way even though you’re going to therapy, it keeps you out of the community because you don’t have as much time for your community and Yeah, for the things that you want to get back to doing because you have to be in therapy. So it’s a real, real kind of challenge in navigating that whole process. So, if I had therapy available to me at home, I would have taken it up immediately, like I did.
Dr. Swathi Kiran 55:18
And I’m, A I’m a very optimistic person, though. So I do think that something good has come out of this pandemic. And I’m sure this is true in Australia as well. But even in the US, it has become clear that you have to make home-based health, home health available through video conference, telepractice, whatever that is, you have to make it available. And that’s a good thing. That’s the silver lining that comes out of this as well. Likewise, in this, you know, in this age of AI that’s affecting everything in our life, again, the positive silver lining for all this within with a stroke, and health and recovery are, in the past, we would be very scared to say, no two people are alike.
Dr. Swathi Kiran 56:05
So I can’t help you. Because you’re so different from the person I saw before. I don’t know what to do with you. But now we can say, well, you’re different and our data can model those differences. And that is another huge technological, scientific leap that’s happened that allows us to say you might be different from the next person that walks in, we can help you. Whereas in the past, we would say, Oh, we don’t know what to do with this. Yeah, everybody looks the same. Let me tell you what’s going on.
Bill Gasiamis 56:36
Yes. So there’s nuance now there are individual applications rather than one size fits all? Right, exactly. Yeah, that’s cool. Now, you know, some of my listeners and community, the stroke survivor community, some of those guys, they’re going to go into parts of life, you know, maybe even me, you know, with dementia, and Alzheimer’s might be an issue. Now, this is, what’s cool about what you’re doing is that it’s not just applicable to one aspect of the community, you’re specifically working with stroke survivors.
Bill Gasiamis 57:12
But have you done work with people experiencing Alzheimer’s or dementia? And if not, is this like easily just like applicable to them? Or do they have more unique things that you need to take into consideration?
Dr. Swathi Kiran 57:28
Yeah, that’s a great question, though. , there are two parts to this. A lot until very recently, I would say five years ago, somebody was diagnosed with dementia, it was even worse than a diagnosis of stroke, because people would say, go home and die, because we can’t help you this is, you’re just going to get worse. And after a while, you’re not going to remember anything. That is not what’s happening. Now, as you know, some drugs have been approved for dementia.
Dr. Swathi Kiran 57:58
And there’s quite a bit of scientific evidence showing that people who are diagnosed with dementia, if they practice therapy, they do, you know, focus therapy, memory therapy, they actually can maintain their skills for a while. So in that context, whatever works for in the context of something like constant therapy, or any other therapy, those exercises, as you mentioned, brain HQ, they are working on attention and memory and focus, they will help people with dementia as well, as long as they can practice it fairly regularly. So that’s good.
Dr. Swathi Kiran 58:33
That’s a piece of good news. And then the second piece that I want to say is, that we are extending all our work into dementia as well because what we have understood and you’ve mentioned this earlier in your podcast is that it’s not just the stroke that affects someone’s brain, overall health affects the brain, what you eat, what your other lifestyle choices are all affects not just your body, but your brain as well.
Dr. Swathi Kiran 59:02
So what we are doing and other people have found is that in addition to what the stroke is done to the brain, there are other things in the brain’s overall brain health, that also predict whether somebody’s going to get better or worse in time, and that’s where some people with a stroke will just get better and you know, they’ll live fine. Other people with stroke are already at risk for other things because of their health or their cardiovascular risk factors.
Dr. Swathi Kiran Documenting Neuroplasticity

Dr. Swathi Kiran 59:28
And they’re actually at risk for decline because the overall brain health is not as strong. So our group and other groups are starting to look at that now because again, you can look into the future. And you can say with this sort of overall brain health profile, you know, you may not be, your prognosis may not be as good as someone who has a different brain health profile.
Bill Gasiamis 59:57
Okay, that’s good for the first time. So what we’re doing is going into therapy, not only with, this is going to help you speak better, but also this as well, this other thing that you pay attention to is going to help you speak better, as well as the therapy is also going to help you speak better.
Dr. Swathi Kiran 1:00:16
Right, we’re trying to understand all those factors. And, there seems to be this continuum of what the brain looks like when someone just has a stroke and what the brain looks like when someone has dementia.
Dr. Swathi Kiran 1:00:30
And there’s something that’s changing in the brain in that process. And we are trying to understand how to document that so we can exactly show where people have a potential for recovery, or whether the higher risk there’s these are not isolated conditions anymore. They’re all different kinds of the same problem that the brain is going through.
Bill Gasiamis 1:00:54
You know, in this podcast series, you know, we’re up to I think your episode will be something like 267, 7, 8, 9, somewhere, there
Bill Gasiamis 1:01:03
is a little bit of a research project. For me, it’s a whole bunch of data. And I see some patterns that emerge. And recently, one of the people who hasn’t been on the podcast, who’s doing it quite tough, who I’ve kind of supported a little bit via email,
Bill Gasiamis 1:01:20
has told me, you know, where are all of the stories from stroke survivors coming onto your podcast, who are doing tough with, for example, a spouse that’s making recovery hard. So you spoke earlier, about people who are not motivated to recover. This particular gentleman has a spouse who is separated from him and is making his life difficult. And that’s getting in the way of his stroke recovery. And he was saying, he was saying this out of frustration and anger because of the situation that he was in amongst all the other situations that he’s in with his health.
Bill Gasiamis 1:01:59
And what I realized when he said that was that I don’t pick my stroke survivors who come on the podcast, they pick me. I asked some of them if they wanted to be on the podcast, and some of them, said no. And some of them say, yes, there’s aphasia, people with Aphasia that have been on the podcast, even though most, even though that’s not a very fluid and quick episode to listen to, right? But with editing, you can get rid of the pauses and the stops, and we can make it cohesive, and it sounds like a very decent conversation.
Bill Gasiamis 1:02:39
And it shares the story of somebody experiencing aphasia, and recovering from it and going after recovery. Now, other people won’t come on the podcast, and they’ll specifically note, that the reason is, is because I have aphasia. And that says to me, something about the fact that the people who do come on the podcast, whether they have aphasia or not, are having a better stroke recovery than the people who choose not to come on the podcast. Because they are, they are talking about it, they are sharing so other people can learn and help them and help other people. They are getting it off their chest, they are getting their story there.
Bill Gasiamis 1:03:24
The turmoil, their condition, all of their chests, you know, they are sharing it with the world, not just this gets downloaded in 60 countries, it’s not just me, they’re talking to the sharing it with the world. And I’ve seen this pattern that the kind of person that comes on this podcast is having.
Bill Gasiamis 1:03:44
This is not a very scientific word, I better stroke recovery than the person who’s not coming on the podcast. So it’s just something about getting involved and participating. And being active and making it potentially about somebody else is supporting recovery, and is supporting the work that your therapists are doing, that you guys are doing. It’s all together. You know, we’re all we’re an important piece of the puzzle. We all got to work together to solve problems for us, and then for the people coming after us.
Dr. Swathi Kiran 1:04:25
Yes, you’re right about that. And I think the best you and I can do is empower the people who are brave enough to come to your podcast, get out in the world, and try everything they can try every day even though it’s hard for them and then motivate the folks who need that little bit push to get out of their house. They’re the ones who need the most help because it’s much harder for them to get out of their house. You know, I mean I was like, get out of their shell. Yeah. And and try. Yeah, that’s what I can do: to give them different ways to feel motivated and try every day.
Bill Gasiamis 1:05:11
Yeah, I love it. As we wrap up, I’d love to ask you if there’s one takeaway from this whole discussion that we’ve had that you want the people listening, caregivers, therapists, and stroke survivors if there’s one thing that they could take away from this episode, is there something that you could share?
Dr. Swathi Kiran 1:05:35
Bill, I want every one of your listeners who’s had a stroke, to know that the worst part of the stroke is having the stroke. After that, the brain has this phenomenal ability to recover, and reorganize. Neuroplasticity happens in the brain. And there is no time limit for that. You have to try different ways because not one approach will work all the time. You may have to try something and if it doesn’t work, stop, come back, and try something else. But don’t give up because every bit of the scientific data suggests that your brain can take this on, and keep working on the recovery.
Bill Gasiamis 1:06:22
Dr. Cure, and this has been an amazing conversation. Thank you so much for the work that you do. Thank you for being on the podcast. I appreciate it.
Dr. Swathi Kiran 1:06:29
Yeah, it was great to chat with you. It was great to talk to you. Thanks, Bill.
Bill Gasiamis 1:06:34
Well, thank you for joining me on today’s episode, it was a cool conversation. I hope you got a lot out of it. 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 recovery after stroke.com/episodes. Thanks to all those people who have already left the review. It means the world to me and you are helping others in need of this type of content to find it easier, and that is making a difference in their recovery and it’s making the recovery just a little bit better.
Bill Gasiamis 1:07:10
If you haven’t left a review and you would like to, the best way to do that is to leave 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. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 1:07:37
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 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 gaseous the content is intended to complement your medical treatment and support healing.
Intro 1:08:11
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Intro 1:08:39
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Intro 1:09:02
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1 hr 10 min
September 18, 2023 Aphasia Recovery and Ischemic Stroke Recovery, 10 Years On | Eric Jackson
Eric Jackson has been living with the aftermath of Ischemic stroke and Aphasia for 10 years now. Listen to how far he has come and how he manages his condition now.
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Highlights:
02:12 Introduction
05:11 Stroke symptoms and diagnosis
12:03 Aphasia recovery and rehabilitation
19:13 Dealing with speech impediments
25:29 TBI recovery, strength, and balance
32:09 Using personal experience to connect with others
36:41 Sharing stroke survivor stories for hope and help
48:57 Driving after a stroke and lifestyle changes
53:59 Weight loss and nutrition
1:00:09 What has stroke taught Eric Jackson
Transcript:
Eric Jackson 0:00
That’s another reason why I try to talk slowly because if I try to talk, normally, I might not get my word out. And I never lost the fact of what I wanted to say it was always the enunciating part, you just work on it every day.
Eric Jackson 0:17
And I noticed that I’m like a gas tank at the beginning of the day I’m full. At the end of the day, if I talk normally, um, I might be done about five o’clock or so. And you’ll hear my words for a little bit, and you can hear my voice get a little bit, the volume will go down, they’ll just get weaker. And I just wanted to control that day by day. I didn’t speak at all until I’m speaking to you tonight.
Bill Gasiamis 0:51
So you made sure that the battery was full when we got together?
Eric Jackson 0:57
Yes.
Intro 1:01
This is the recovery after stroke podcast, with Bill Gasiamis helping you navigate recovery after a stroke.
Bill Gasiamis 1:08
Hello, everybody. Welcome to the Recovery after Stroke podcast. If you are a stroke survivor with a story to share about your stroke experience, come join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill Gasiamis 1:28
All you need to do to qualify as a stroke survivor who wants to share your story in the hope that it will help somebody else who is going through something similar. If you are a researcher who wants to share the findings of a recent study, or you are looking to recruit people into your studies, you may also wish to reach out and be a guest on my show.
Bill Gasiamis 1:46
If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover. There is also a path for you to join me on the show for a sponsored episode. Just go to recoveryafterstroke.com/contact, fill out the form explaining briefly which category you belong to, and I will respond with more details about how we can connect via Zoom.
Introduction – Aphasia Recovery

Bill Gasiamis 2:12
Now this is episode 268. And my guest today is Eric Jackson, who experienced an ischemic stroke 10 years ago. And amongst overcoming the physical deficits, he has also had to overcome aphasia. Now in this discussion, Eric demonstrates how far stroke survivors can come after a decade of recovery. And Eric does a lovely job of explaining how he still needs to manage his deficits and energy levels. Eric Jackson, welcome to the podcast.
Eric Jackson 2:44
Thank you very much, Bill has been looking forward to this all week.
Bill Gasiamis 2:47
Well, I’ll be looking forward to having you as well thank you so much for deciding to connect and to be on the show. Tell me a little bit about what happened to you.
Eric Jackson 2:56
It was March of 2013. I was watching the NCAA Tournament, Best Basketball, and Final Four. And I wanted a bathroom. And just when I was about to come out, I started throwing up and did not know what it was. Initially, I thought it was food poisoning. And even though I’ve never had food poisoning before. After I stopped doing that, I just felt very, very weak.
Eric Jackson 3:01
I think it is maybe about three minutes to last doing that. And I crawled the bed and went to sleep at night. It wasn’t until the next morning that I rolled out of bed. And I put my feet on the ground. And I realized that my strength and balance was not there.
Eric Jackson 3:59
And then when I finally stood up, I remember just taking steps to my left because my whole right side I had no balance, no strength, no nothing. And I tried to just talk and I never lost where I wanted to stay. You just couldn’t understand it. And now this is the part where I’ve told some people, some people I haven’t but I did not go to the ER right away.
Bill Gasiamis 4:34
It’s a very common thing. You’re very normal. It’s what most of us did because we’re working out in our minds that it’s anything but something serious.
Stroke symptoms and diagnosis of Eric Jackson
Eric Jackson 4:50
I’ll test it out here. I didn’t know really what it was. Of course, in my mind, I’m thinking maybe You know, the next day it will go away. And of course, the next day it didn’t go away. And I found out about 36 hours until I went to the ER. And another check on the list. I drove myself to the ER, Man, I know I shouldn’t have done that. But that now,
Bill Gasiamis 5:21
Yeah, it was efficient. It was easy. You didn’t have to ring anybody didn’t have to pay for an ambulance. Yeah, makes sense.
Eric Jackson 5:30
And not that it makes a difference. But the hospital I went to, might be a mile and a half from my house. But I know that that makes no difference. But when I finally got there, speaking to the check-in woman, I tried to tell her exactly what was happening. And she was great because somehow she pretty much deciphered.
You know what I said. And so I got admitted, they did all bunch a test. I remember he got there early morning, eight o’clock or so, and looked at it, they did a bunch of tests, and doctors came back. And he just said to me if you had a stroke, and I did not react whatsoever. I just remember him telling me that we were going to do some more tests, which we did. And it was about, say three, or Phil said about four o’clock when everything ended.
And turns out that I was also diagnosed with diabetes, which I probably had maybe a year or two before I had the neuropathy in my foot. But never got it checked out. Didn’t think it was you know, serious. But I remember him saying that we can do more tests now. Or you can come back tomorrow, and we can continue to test.
And stubborn me. That’s all I needed to hear. So I went home, came back the next day, and continued to test. And so but everything as far as myself having a stroke. I mean, I was overweight, I had high cholesterol, I had high blood pressure. So you can say something was going to happen. It just happened to be that.
Bill Gasiamis 7:31
I’m curious about that when they diagnosed the stroke. What condition were you in? Then they said you can go home if you need to. I don’t understand that if they’ve what type of stroke was it?
Eric Jackson 7:46
ischemic stroke, stroke, blood, blood cocked to the head. And I agree with you, Bill. I mean, when he said those magic words, everything else did not matter to me because I was there for about eight hours though. I’ve never been to the patient in the hospital. So I guess eight hours was enough for me. But yeah, my my mindset was there. But I think getting home and going back to the next day was in my mind better and better for me, even though probably wasn’t better for me. But are they treating it?
Bill Gasiamis 8:26
How did they treat it? Did they get rid of the clock? What happened to the clock?
Eric Jackson 8:31
Well, I forget The Drudge to the drug when you do. I yeah, I didn’t get that because sucks that I was about 36 hours before after I had my stroke. I don’t know if you can still get that admitted then. But that did not come up at all. Just all the tests. And you know, my blood pressure was I remember, I remember looking at my blood pressure and it was like one 190 over like 110 And when I was released, it went down to like 170 over maybe 90 or so. So I don’t know the indication of okay, he doesn’t have to stay overnight to continue to test now. But that’s what happened.
Bill Gasiamis 9:27
That’s so strange. So when you were when you were going to the toilet, did you have nausea? Did you feel nauseated or were you to the toilet to do what you had to do and then all of a sudden you just out of nowhere threw up? How did that happen?
Eric Jackson 9:46
A lot. I was basically about to exit the bathroom. And then I got the feeling and I just went back to the toilet and started throwing up. But before that no Oh, no, not no notice it No, no, nothing. No indication whatsoever until that exact moment.
Bill Gasiamis 10:09
were you living at home with somebody? When, when that happens?
Eric Jackson 10:14
No, I was living alone. Same as right now. But I was living alone. Nobody was with me at the time.
Bill Gasiamis 10:22
Nobody to bug you and get you to the hospital sooner. Exactly
Eric Jackson 10:26
that they should have been there.
Bill Gasiamis 10:30
Fair enough. What kind of work were you doing?
Eric Jackson 10:34
Well, in March of 2,003rd, the year before May of 2012, I was working for Time Warner Cable, and we got laid off at that time. So pretty much took off the summer, I remember saying I was going to take my severance package and enjoy my summer, but the winter not so much. But then the next spring in March, that’s when they happened to I was unemployed at the time.
Bill Gasiamis 11:07
Okay. So you’ve gone to the hospital, they’ve sent you home, and you went back the next day for tests? Did those tests reveal anything that required you to have a hospital stay?
Eric Jackson 11:25
You know what I’m gonna say no because I was there all day. And I think at the end of the day, they were already setting up my physical therapy along with my speech therapy. And that started. If that was like, say, a Monday that started maybe two days later. And of course, the medication that I was going to take was also going to be started that same day as well.
Aphasia recovery and rehabilitation

Bill Gasiamis 11:57
So you’re going now it’s the second day, and they’ve set up your physical therapy and speech therapy? Which physical deficits did you have? What did you have to overcome?
Eric Jackson 12:08
My whole right side was gone as far as any type of balance, or strength. So that that was that was a one as far as the physical part. Nothing, nothing on my left side, just to that effect on my right side. And then also my speech, it was, not as good as it is right now. I still don’t think it’s that good. But the speech therapy was back to square one, it was all the exercises that you probably did as a child, and I couldn’t do it then. So it was gonna be interesting to attempt it, then. But those two things were the affected things I had to rehab.
Bill Gasiamis 12:56
How did you get to and back home from the hospital after the second visit? Did you have to drive again?
Eric Jackson 13:04
I was hoping you’re going to skip that. I did drop that. That second day. I did drive there. And I did drive back.
Bill Gasiamis 13:13
Wow, that’s amazing. I mean, it’s amazing that they lifted to you. I get it that you’ve had a stroke, you don’t understand the seriousness of it. All those things are quite common, and they’re very normal. And it’s still shocking to hear that. I drove myself to the hospital for one of the incidents that I had as well.
Bill Gasiamis 13:35
I don’t know about it. Like, I know that that happens. What’s interesting is that the hospital, and the doctors just kind of allowed it to happen as well. They just went along with it. After somebody has visited with a stroke, they send you home. And then they said just come back tomorrow. And you know, they didn’t ask you how you were going to do that. They knew you had deficits.
Eric Jackson 14:01
What were the last three to look at a broken arm? Yeah, that was not a stroke. You know what? I think what? What kills that is what I did. And I didn’t have to do that, that that was all me that was just stubborn me as far to do where I should do. And I didn’t.
Bill Gasiamis 14:27
Yeah, well, okay. Well, it worked out. Well. You got to the hospital twice. And how long did you stay in rehab?
Eric Jackson 14:36
Well, what happened first was, I wasn’t working at the time. It took me about two or three days to get my you know, my insurance, okay to do rehab, and speech and physical therapy both started things the same day. I remember doing physical therapy in the morning.
Eric Jackson 15:00
And luckily speech within the next building, which was like, you know, 200 feet over, and I walked to do speech therapy. And I did both of them for, I’m gonna say about two months. And that’s when my insurance ran out.
Eric Jackson 15:19
But at that time, what I was doing for physical therapy was all the computer exercises as far as balancing, and not much walking. But more balancing exercises. And after two months of that, not that I felt, you know, great to walk around.
Eric Jackson 15:44
But I felt enough to continue what I wanted to do, as far as speech therapy, exercises as far as even Google Voice, and a lot of tongue twisters. words with the same letter. And I remember telling her at the beginning of each exercise, like, I couldn’t do this before, I don’t know how good way to do this now.
Eric Jackson 16:12
But after the speech therapy ended, my thought process would just get a newspaper or magazine, and I just read it out loud. And that was my speech therapy. As far as my physical therapy, I went to a community college, which had a track, and I would just have one lap around the track. And it would take me about maybe 12 minutes to finish.
Eric Jackson 16:39
I was tired, I was sweating. But my mindset was, was one day at a time. I’m going to do this one day at a time. And so both speech therapy and physical therapy, look, it was a it was a springtime, and I had all summer to do this. And that’s exactly what I did. Everything was trying to get better every day. And I think that I did that. During my self-therapy, if you will.
Bill Gasiamis 17:09
It sounds like you did a fantastic job. You so matter of fact, this happened, I’m going to do that that happened, I’m going to do this. This has gone away, I’m going to do this to fix it. Was anyone supporting you? Were you being guided by anyone? How are we going through this alone?
Eric Jackson 17:31
There, nobody was necessarily guiding me. But I did have friends that I eventually told that you know you know, a good support system. You know, I would it would be more of I would tell them what I’m doing. And they might, I might talk to them at the end of the day. And I said, Did you do this to do that? And I said yes.
And that’s sort of how I kind of roll anyway. But I mean, once I told my uncle and aunt who live like two miles down the road, and certain friends that I told them, they chimed in on me. They didn’t forget about me. I didn’t tell you know, 100 people, but you know, it was a select few. But I had a good support system.
Bill Gasiamis 18:22
The timing, as far as your work was concerned seemed to be decent, where you weren’t working, you had received a severance package. So now you’ve got time to yourself. So that came in at the right time? Did you eventually move through the recovery and get to a stage where you started to reconsider work and go back to work? What happened after the therapy?
Eric Jackson 18:48
Well, what happened? Not, I’m gonna say it was about maybe maybe two years as far as my therapy. And I had, I remember an appointment with my cardiologist. And I remember telling him that I’d like to go back to work.
Eric Jackson Dealing with speech impediments
Eric Jackson 19:08
And because I didn’t know if there were any rules or anything like that as far as what to do. And he just turned to me and said, you said how do you feel? I said I feel fine. He said I’ll write you a little note that you’re good to go.
Eric Jackson 19:22
But you have to promise me that you work part-time. So that was a deal. So that’s what I did. I there’s an enterprise we’re in a car right down the street for me. They advertised the job, basically a prep job to get the big ticket, and get the cars already prepped for for renting, and I applied. I got the job. And it was about about 20 hours a week.
Eric Jackson 19:50
And of course, before that, I’m still on SSDI Social Security Disability Insurance. It worked out with my income requirements. And so that was my first job. From full-time time Time Warner had about three, a three-year gap.
Eric Jackson 20:10
But you know, you do enough and you think that you can do something else and you know waking up and, you know, doing your rehab, that takes about maybe 30 minutes, 45 minutes, and then you have the whole rest of the day. And so that’s when I did have the appointment with my cardiologist and he said, you know, how do you feel exhausted? I feel fine. That was the goal for me.
Bill Gasiamis 20:36
Yeah, well, that’s good. Sounds like you did give it plenty of time to get back to work. Three years of looking after yourself getting yourself ready and fit and overcoming your deficits. How long did you feel like your speech deficit was way better than what to begin? So you would have been feeling like you weren’t communicating well, but at some stage, you might have felt, I’m communicating well, now, how long elapsed until you got to that stage?
Eric Jackson 21:10
When I first started that enterprise, I think I learned how to control my speech. What I would do and what I’m what I do try to do still now is to talk slower than I usually did. So that way, I can enunciate better. And you don’t say all the time, I’m sorry, what did you say? So I made sure that I constantly tried to talk slowly enough to enunciate the words.
Eric Jackson 21:45
And at at the time, or maybe right after that, I would speak to somebody, and when I said I had a stroke, and it affected my speech, they said I can I can, I can see that a little bit. But I’ve thought maybe you just had an accent or, you know, an accent or something. They wouldn’t know what happened until I told them. And that’s still today, the best compliment when they say I wouldn’t even guess that you had a stroke. And that’s, that’s, that’s the best compliment.
Bill Gasiamis 22:20
Yeah. When you’re, as you speak, right now. What was the problem with the speech that you had? Some people who don’t get the word have aphasia, for example, they can make the word come out of their head, for example, there’s a disconnect between the mouth and the thought of the word, what was your specific problem with your speech?
Eric Jackson 22:47
Mine was just unnecessary enunciating words, it could be the simplest words, and I might stutter, or it might take me four or five attempts to say, and that was, that was my, you know, speech impediment. And it still is. That’s another reason why I try to talk slow, because if I try to talk, you know, normally, I might not get my word out.
Eric Jackson 23:16
And I never lost the fact of what I wanted to say it was always the enunciating part. And just, you just work on it every day. And I noticed that I’m looking at the gas tank, like the beginning of the day, you know, I’m full.
At the end of the day, if I talk normally, um, I might be done about five o’clock or so. And you’ll hear my words for a little bit, and you can hear my voice getting a little bit, the volume will go down, they’ll just get weaker. And I just wanted to control that day by day. I didn’t speak at all until I’m speaking to you tonight.
Bill Gasiamis 24:02
So you made sure that the battery was full when we got together?
Eric Jackson 24:07
Yes.
Intro 24:07
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. You probably don’t know what questions to ask.
Intro 24:32
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 24:51
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, add to the website now, recoveryafterstroke.com, and download the guide. It’s free.
Bill Gasiamis 25:10
Fantastic, mate, thank you. This happened 10 years ago for you and you are 10 years out, what is your right side like now? Are there any challenges with the physical part of your body?
Aphasia recovery, TBI, strength, and balance

Eric Jackson 25:29
Well, now I gained, let’s say, most of my strength back on my right side. When I was rehabbing, I would do all right-side exercises, I wouldn’t even use my left side, did that for maybe, about a year. And I remember one time, I was feeling pretty good, you know, lost some weight, I knew I had some strength back. And I went to the bench. And I put on about, I think I put 3 pins on there and put it up three times. And I was good and I’ve never done that again.
Eric Jackson 26:13
But that’s probably where I left off, you know, 10-12 years ago. But now I mean, walking, you can still see a slight limp when I do walk. But I’m comfortable and walking now. It took me about a year to do stairs. I’m comfortable with that right now. So everything was with strength and balance.
And still is, there are some times where I will pick up something with my right hand, you know, still do a little shake, I still have specificity in my walking in, you know certain tasks. But like, for saving, I’ll just do my left hand up, I won’t do my right hand at all. Did you have to turn to do that? But balance and strength were the from the get-go. That was what I had to deal with.
Bill Gasiamis 27:13
And is that energy battery also makes your deficits worse, at the end of the day for your right side, do you also notice that you’ll limp it gets a little worse and your hand spasticity gets a little worse when you’re out of energy.
Eric Jackson 27:30
I don’t think physically, I don’t think it affects the end of the day if he steals my speech. And now I don’t know if I should talk more during the day, or keep doing what I’m doing is to hard balance. But I’m gonna stay with keep what I’m what I’m doing. But as far as far as my balance and strength, when I do walk, or I do work out. I still feel that my strength is almost back. And I don’t worry about any deficits as far as physical deficits.
Bill Gasiamis 28:12
That’s interesting. A lot of people will say that all the deficits get worse at the end of the day. And that’s what I noticed. But, interestingly, yours don’t. And that’s great that it doesn’t that maybe because
Eric Jackson 28:25
I tried to work out maybe the bidding beading of the day. Oh, maybe I don’t notice it that much. Perhaps it would if I you know, tried to do a workout at about eight o’clock PM, that will happen. But I make sure that either I’ll work out in the morning or I might not work out that day. But I’ve always tried to do with at least before noon anyway.
Bill Gasiamis 28:50
So today, you’ve saved your voice for me. But what does that mean during the day? Does that mean you don’t go anywhere, anywhere where you have to talk? You don’t ring people? How do you avoid talking to people for the entire day to get to the end of the day and be fresh?
Eric Jackson 29:08
Well, today Bill, I did not have to go out, go shopping, or meet with anybody to go to work. So when I woke up you know, I worked out. I did some things in my office in my house. I listened to music most of the day. And I said I’m not the only time I talked I was texting you using Google Voice to certain people. But other than that, I said if I have to go about an hour, I’m gonna save it all for Bill.
Bill Gasiamis 29:40
All right, thank you. Appreciate that. So what’s life like now? It sounds like life’s okay. Are you in a different job? Are you still doing the car preparation job? How did you move on from that? After that first sort of three to five years.
Eric Jackson 30:01
Well, there have been jobs in between that, just to fast forward to right now, I’m working at a rehabilitation hospital off the front desk. And the reason why I’m there. It’s a team hospital that I rehab that, you know, three, four years ago at the gym, and maybe last summer. So I said, You know what, I just want to get my foot in the door.
Eric Jackson 30:31
And I think the best way is to go to that rehabilitation hospital. And luckily, they’re always hiring. And there was a job advertised for the front desk, and, you know, got the interview, and looks like I got the job, been there for about a year. And that’s the best part as far as everybody’s there. Well, not everybody, but when people are there to visit family or you know, someone who is rehabbing there, I feel like I have a connection with them.
Eric Jackson 31:09
Because I went through the same thing. It could be different. We do have a TBI word. But they might be, they might be rehabbing a broken hip. But whatever it might be, I feel like I do have a connection with them. Every person I don’t say that, you know, had a stroke, and we get into a conversation. But there are there are some that I do.
Eric Jackson 31:34
And just a conversation back and forth, whether what they went through or what their family members are going through to best partner they and it kind of leads me toward being more of a stroke advocate or, you know, parties or TBI advocate. And so that’s what I’m doing now, about 2025 hours a week. I work there tomorrow morning. And that is my path right now.
Using personal experience to connect with others
Bill Gasiamis 32:09
That’s a good path. The good thing about that is that if you do get involved in a conversation with somebody, and you do mention the fact that you had a stroke. And you do mention the fact that it was 10 years ago. What I hope it does is provide hope for the family or for the person that there is this possibility of progression.
Bill Gasiamis 32:30
And for things to improve, even though their loved one may have had a different stroke or may have a different deficit, or whatever it is, at least it offers some hope that here is Eric, you know, he had a stroke when he was 44. And then he had some tough times he had to overcome certain deficits and challenges.
Bill Gasiamis 32:56
And then 10 years later, here he is in a position where he is working in the space, which is important to him. The evolution of stroke has this story that he can show and can tell people that you can fight for your ability to get back to work to life to have something meaningful in your day. It can look however you want it to look and you can choose what you’ve chosen.
Eric Jackson 33:34
I agree with everything you said, Bill.
Bill Gasiamis 33:36
Yeah, that’s a great thing. And it does create a connection. And because you understand and it has, you’re able to have empathy. And you’re able to know what people are going through and what might be on their minds and what might be troubling them. And that’s an excellent position for you to be in right at the front door when you’re almost the first person that they see when
Eric Jackson 34:04
I am the first person. Yeah, I am the first person they see when they walk into the hospital and it’s a good thing.
Bill Gasiamis 34:12
Probably the last person on the way out as well.
Eric Jackson 34:15
Exactly. Exactly.
Bill Gasiamis 34:18
That’s fantastic. So that organization that you work with, did you use that story to help get you the job? Did you say by the way, do you know that I was a patient here? And I think you guys are fantastic and all that type of thing.
Eric Jackson 34:36
That did come up. What happened is I was at I was in a waiting room at the time was maybe a small space that maybe two or three chairs. It’s to prove it’s improved now but I was just waiting for my contact to come out. And what happened is the gentleman who was the manager of the gym that I rehabilitated that he walked out because he was, I think it was the person who was taken over his job.
Eric Jackson 35:11
He was walking around the hospital. So I was talking to him for a little bit. And as I was talking to him, my contact walked out. And so I’m saying, boy, she is to me with talking with the matter of the gym. So he must know him somehow. So we went back we interviewed interview was fine. And then two things I said, Well, I did work out at the second-floor gym to rehabilitate it.
Eric Jackson 35:42
And then my ace in the hole, is my uncle has been volunteering there for about 19 years. Wow. And, and I said, Oh, you might know my uncle. And she goes, Oh, who was it? And I said, it’s curl, then also, oh, my god, curl. We love to curl this and that. And, you know, in my mind, I said it. This is over it. So I pretty much got the job.
Sharing stroke survivor stories for hope and help
Bill Gasiamis 36:11
Perfect, I would use that too. Especially Uncle Carl was a good person to suggest and he wasn’t being a pain in the butt. Otherwise, you have to distance yourself from him. But never. Yeah, I love it. Well, I think that’s the beauty of it, right? You can still be yourself, you can still find a way to get over the line to achieve your goals to do your thing. So what’s the plan? Do you see another role for yourself in that organization at some stage? Or are you just happy doing what you’re doing?
Eric Jackson 36:51
Initially, when I got the job, I said, I would like to, you know, maybe have another job and do time with them as maybe some type of a speaker or just an advocate for you know, for stroke itself. I have done is I have I did speak once, at the activity night during the thick of 6:30-7:30. And I met the one, who runs the who is in charge of activities.
Eric Jackson 37:30
I asked him can I speak one night when the TBI patients were there, usually, it was a game night for playing Yahtzee or whatever. So one night, I went out there and spoke for about 10 minutes. And everybody seemed very pleased. I haven’t done it again yet. But that’s something along the lines that I’d like to do. And also the same hospital that I initially went to when I had my stroke.
Eric Jackson 38:02
And I did participate in stroke meetings right after my stroke when I had it. They discontinued it for whatever reason, whether it was money or participation, but they have they have thick necks next week, they’re doing the groups again, and on Thursday, I think it was Thursday. I’m going to participate again in a shrink meeting there.
Eric Jackson 38:33
And so again, get the ball rolling and do something even for your podcasts. I think I just went online and typed stroke podcast, and yours came up and you know, submit submitted by information and you got back to me. And I was pretty shocked. And I said I’m doing this once we can get a time down. And so bits and pieces like that as far as what my path, I think I want to be as far as what I’m going to do in due time.
Bill Gasiamis 39:07
So it sounds like you have decided to make a point of helping in the area by advocating and sharing our story. What are the benefits of sharing your story? What do you feel is the reason why people should share their stroke story?
Eric Jackson 39:26
Maybe the number one reason is is help is helping and hope. Like you said people like hearing stories. And when they do hear a particular story. It might help someone it might not help them but maybe they’ll tell somebody might help another person and just an avalanche effect. That’s what I hope I’m going to do as far as to have my story out.
Eric Jackson 39:54
And you know, I would love for you know hundreds of people and you know that A couple of days to come to me and say, Well, I heard your story, I heard your journey. And that’s my mindset right now. It’s, it’s great to tell my story after 10 years, I figure if I can make it 10 years. I don’t know if I’m an expert, but I have an experience of 10 years of being a stroke survivor.
Eric Jackson 40:25
So I want to, I want to tell that story. And I want to help as many people’s problems as possible. And then I want them to, you know, have that in their mind that, you know, I can do this too. Or maybe they’re, you know, brother or sister, whoever it is, you can do that as well.
Bill Gasiamis 40:46
You’re an expert after 10 years, you’re the expert. Recovery? Absolutely. Yes, no doubt about it, your experience. You’ve lived with yourself for 10 years, so you know what it’s like, and you can speak on that. And you’re a very credible person to, to have that platform, you know, to be able to stand in front of people.
Bill Gasiamis 41:12
And what’s interesting is that many stroke survivors who come on the podcast, tell me that they get something out of it, they feel good about sharing their story, and it helps to get them something off their chest. But then what’s interesting, Eric, is I get a lot of people contacting me through the YouTube channel, or my website, or Instagram, or social media saying, you know, thank you for the work that you’re doing.
Bill Gasiamis 41:41
Thanks for the episode that helped me. I listened to 260 episodes so far. And they’re not all different. They’re very, very similar. But every person is different, every person’s unique, experience offers something different for every person. So the more people we can get onto a podcast, the more people who share this story.
Bill Gasiamis 42:08
It doesn’t matter how minor, or major, where the stroke was what it affected, the more chance that we have of somebody out there, finding the one that they resonate with, and then going, that explains it all. Okay, I appreciate that. Or ik, if he can be like that, I can be like that. I don’t know the type of people who look up to me, I don’t know if I don’t know the demographic or people who relate to me.
Bill Gasiamis 42:37
But hopefully, I found the demographic of people that will relate to you, and then they’ll come then they’ll go, well, Eric’s my kind of guy, you know, I can be like Eric, and I’m going to follow his example. And then take my recovery to the next level by going to the gym every day, in the morning, so that I’m not tired at the end of the day, or I’m going to save my voice for special occasions.
Bill Gasiamis 43:05
That’s a great thing. I mean, I never thought about it like that. But I used to save myself for special occasions usually going to a party or whatever. But I would give myself time the next day. If I had a party to go to I’d go about my business as normal.
Bill Gasiamis 43:23
And then we’d get to the party. And then the next day, I would have nothing to do so that I didn’t have to be hungover. Not that I drank, but like stroke hangover and then get through my day. You know, so that was my strategy to make sure that I got there. And I was I was able to fully participate.
Eric Jackson 43:55
Yes. Then when I did find your podcast, I listened to I don’t know if it was last week or maybe two weeks ago. But I think his name was Chris. He was the one who got into a car accident in Princeton, New Jersey. And I listened to what he went through as far as you know, the I’m not gonna get into it, but the whole school thing and he was in a coma and then graduated high school and then graduated college and got two degrees.
Eric Jackson 44:27
And I’m listening to it I said, I can’t follow this. This guy’s amazing as far as what he did, but every TBI is different. Every rehab is so unique, that you read like says it’s not a broken arm, there’s no there’s no formula for it. And once you get your groove as far as what to do, and it might not be, you know, a medical journal that you look through that You know, does the trick, it might be your own little thing combined with, you know, law knowledge that you have. And you know what, what Chris is I thought was amazing. And every day you just learn how to deal with the rehab, and hopefully, you get better.
Bill Gasiamis 45:17
Christopher Dietrich was episode 260. He didn’t have a stroke, but he had a car accident, which gave him a traumatic brain injury. However, there are a lot of similarities between recovery from a traumatic brain injury and stroke. It’s the same kind of challenges people face. And yeah, and what was interesting about Chris is that he decided that he was going to leave his home country and go overseas and live overseas.
Bill Gasiamis 45:48
And I remember when I was interviewing him, I said, you went on your own. I kind of felt a little bit like, wow, that’s a big deal that you’re unwell. Nonetheless, you went overseas and he went and got a job. And he did all the things that he was going to do. He made it sound so effortless. I know. It wasn’t. But he made it sound so effortless.
Eric Jackson 46:12
He did.
Bill Gasiamis 46:12
Yeah. But I know it wasn’t I don’t want people who are listening, who go back and watch episode 260. To feel like he didn’t have anything wrong with him or everything was easy. It wasn’t. But that’s how he reflects on it. He reflects on it. Like it was nothing.
Eric Jackson 46:30
I was just more impressed than anything else.
Bill Gasiamis 46:32
Yeah. He’s a great guy. He contacted me for the same reason, right? He said that it was time for him to start sharing his story. And it’s time for him to start telling people about what he went through what he overcame and what’s possible. And that’s perfect. You know, he was 18. But to him, he was 18. So he missed out on a lot of those parts of, you know, the early 20s when we’re running amok and enjoying life to the full, he missed out on a lot of that.
Bill Gasiamis 46:32
But it didn’t get in the way, it still seemed like he went out of his way to get to the point where he was going to do everything. That right, that was on his mind that he needed to get done. It was a great story. Yeah. I hope well, clearly, it inspired you. And I know there was another comment about it as well on the YouTube channel.
Bill Gasiamis 47:31
And I imagine that for every comment that people make, I imagine there are another 10 or 20 comments that people don’t make who feel the same way. And that’s the reason why the podcast is so great because it’s not essential to your comment. But I know that just by the law of averages when people are commenting.
Bill Gasiamis 47:54
One or two people, I know that many, many, many others are getting positively impacted. Now, sure, if anyone’s listening to this episode, they are getting positively impacted, and they love this story from Eric, leave a comment in the YouTube comments. Let us know. Let’s leave more than two comments on this episode. This time, that’d be fantastic.
Eric Jackson 48:17
If you want the best to be about the first couple of days go right ahead. I’ve been through it before the first couple of days. As far as what I did. What not to do?
Bill Gasiamis 48:31
Yeah. Well, you did all the wrong things. But you didn’t know there were the wrong things.
Eric Jackson 48:37
Well, no. That’s not what some people said.
Bill Gasiamis 48:42
About they said you should have done better?
Driving after a stroke and lifestyle changes for Eric Jackson

Eric Jackson 48:45
They said you should have you should have gone immediately you should have called you know, 911. And I didn’t say anything because they weren’t wrong. Just sat there and took it, you know, didn’t know
Bill Gasiamis 49:00
how do you know, I got told the same thing you shouldn’t have driven here. I know. But I had a stroke, but I’m not thinking clearly. All I know is I need help. I don’t know how I’m going to get help. All I know is I need help. And I’m going to go where the help is.
Eric Jackson 49:17
Exactly, yes.
Bill Gasiamis 49:19
I drove about. I reckon I drove about. In miles. I think I drove about three or four miles to the hospital as well. Okay. I knew where it was. I can’t remember getting there. I don’t remember. I can’t remember how I got there. I don’t know. There’s nothing in my memory about how I drove my car to the hospital.
Bill Gasiamis 49:44
I know I got there, I know where I parked. I parked in the illegal parking zone. I called my wife walked in and told them I was having a stroke. They didn’t believe me, I argued with them, “I am” I gave them my name, and they finally looked up my history, and then they admitted me.
Bill Gasiamis 50:06
It was the third bleed that I was having. And, but I can’t remember how I got there. And okay. It’s not the right thing, but it worked out. And I’m glad that it worked out. And I’m glad I didn’t hurt anyone or me. But it’s, it’s not what I was thinking at the time. I wasn’t thinking of anything like that.
Eric Jackson 50:27
Yes. I mean, I can immediately jump to, Hey, it’s 10 years later, I’m here. You know, forget what happened. The first off, you know, a week or two. I’m here. Yep. That’s it. And, hopefully, I can like, you know, change your mindset. And they could agree with me, and then we can we can go on from there.
Bill Gasiamis 50:47
Yeah. It worked out what they said. I think the people who say that are concerned about our well-being and other people’s well-being they Sure, sure. Well, you could have hurt yourself. I know. I could have bought it didn’t. Yes. Let’s move on.
Eric Jackson 51:03
That exact that’s exactly my attitude, whether they agree with it or not that that exactly is.
Bill Gasiamis 51:09
And in the same position. What’s strange is many people make the same decision. The number of stroke survivors that I’ve spoken to who said they drove themselves to the hospital because they didn’t want to call an ambulance. They didn’t think it was that serious. Well, how could you Nobody’s expecting to have a stroke. Right?
Eric Jackson 51:28
I mean, I didn’t know it was an actual stroke until the doctor told me. So I remember telling, telling a friend of mine, because I was gonna travel to New Jersey, that weekend just to visit in our room and tell him that, I probably just said, I was not feeling too good. Because I didn’t know it was an actual stroke, then. But yeah, I didn’t know until the doctor told me. And then that’s when everything started.
Bill Gasiamis 51:57
So now how about all the other underlying causes? Has everything settled down regarding diabetes, and high blood pressure? Where are all your other little things near? Where are they?
Eric Jackson 52:11
Well, when I had my stroke, I was about 270 pounds. Right now, I just weighed myself yesterday. 218 pounds. So we got that under control. And that’s the lowest weight that I’ve been since my sophomore year in high school, I believe. So check, check that off, and I’m gonna keep that up. My blood pressure was like 190 over 120.
Eric Jackson 52:42
It was peeking at the machine while I was lying down. Today, I’m still on blood pressure medication, but it’s constantly like 120 over 80. So, I got that checked off. And my diabetes, I remember my first seat check was I think it was the 11 or so. And now it’s right at seven. I’m having trouble getting it below seven because I know that I cheat too much. But from, you know, from 11, downtown to the seven that’s a great accomplishment.
Weight loss and nutrition
Eric Jackson 53:23
And I don’t have any, you know, physical effects from having type two diabetes. And you know, the weight loss still definitely helped my cholesterol check from my last blood work about six months ago. You know, that was cholesterol was very good. I mean, right now, I don’t eat many fried foods at all, every once in a blue moon. So all those factors have a stroke as far as being obese, having high blood pressure, and having high cholesterol. I made sure I took care of them.
Bill Gasiamis 54:04
Weight loss is making a massive difference in every part of life. How you feel specifically and then also how it impacts your body and how it impacts the blood sugar levels. Going to the gym is also helping your blood sugar levels.
Bill Gasiamis 54:18
As you’re pumping iron, you’re getting all of that sugar, all that energy out of your body and the body doesn’t have to work so hard to break it down and process it. So that’s all beneficial. And you lost a significant amount of weight. You must feel lighter on your feet and more comfortable in yourself.
Eric Jackson 54:42
Yeah, that felt great. I think it’s two years ago, I had my 30th high school reunion. And you know, everybody said that I look great. And I’m thinking of the same way I was in high school there. years ago, not too many people can say that. And that was two years ago, and I think I might have like, slipped off five pounds since then. So I have a formula as far as my diet and working out that I’m going to stick with and, you know, if it ain’t broke, don’t fix it.
Bill Gasiamis 55:22
Is that the case of your success? Just being vigilant about your process, you’re the way that you go about your day looking after yourself and everything?
Eric Jackson 55:32
Yes. I mean, there. It’s like, don’t don’t get me wrong, Bill, I’ll cheat. I mean, there’s gonna, you know, sometimes it will be that Snickers bar, and I’ll have that happen, you know. But, like, like, like this past week, I think I had like, three consecutive days where I didn’t snack, I didn’t eat late. And everything contributed, I think I lost maybe like three pounds in three days.
Eric Jackson 56:00
And with me, the thing is, don’t get cocky and go out and get a, you know, five slices of pizza and eat that. And so that’s the balance. I mean, I will have more days out of the week, if I do well. I’m fine with that. I don’t have to have everything written down.
Eric Jackson 56:22
And, you know, seven days a week, do this and do that. I mean, I can tell, I can tell. And, you know, I’ll always tell you we’ve moved my clothes, I can tell. And that’s, it’s a good barometer because I had to give away most of my clothes. After all, they were too big. And I just had to buy all new clothes to, you know, fit the new me. And it was, it was a good thing. That’s a good problem to have.
Bill Gasiamis 56:47
That’s a great problem to have. So Snickers is your visor. If you come across a Snickers bar on a Saturday, which is your day off? You have to have it?
Eric Jackson 56:58
Ah, well, vices if I stay in the house, I don’t I don’t buy like sweets, for the most part. If I’m at a grocery store, and you know, I go down, you know, the wrong aisle it’d be bad. That’s a thing. I try not to, you know, go someplace to buy something that might offset the diet. I tried to eat what’s in the house. And if I stick with that, I’ll be okay.
Bill Gasiamis 57:31
Yeah. I like that. Don’t bring it home, therefore, you can’t eat it. I like it. Yeah. I remember one of the worst things that I used to do as far as nutrition goes, which, I mean, I don’t think it even comes under the word nutrition. Do I still love eating a Mars bar and having a can of Coca-Cola at the same time? I’m not sure. I think that that would be enough sugar to get me through the next three months these days. I mean, I didn’t have anywhere near that.
Bill Gasiamis 58:03
That amount of sugar. I was so addicted. But you think about Mars bar, it must have 50 or 60 grams of sugar in it. And then a can of Coke, the same amount. I would use a can of Coke to wash down the Mars bar and all the stickiness and all that stuff. It was terrible. But amazing. It was amazing. Oh my gosh, it used to be my daily thing.
Bill Gasiamis 58:31
But of course, I would never do that. Now. I can’t remember the last time I had a Mars bar. Alright. I don’t think that I’ve had a can of Coke man for three years more, or any soda for that matter, any soda for at least three years.
Bill Gasiamis 58:48
And the last time I had soda even if it was three years ago, I probably only had a very small amount, you know, 100 meals or something? Just who knows? Whatever reason, because it was there. And it was my day off or something like that. And as far as five slices of pizza, I remember the old days when I would eat an entire pizza.
Eric Jackson 59:09
I’m glad you said that. Not me. Yeah, I’ll just leave it at that
Bill Gasiamis 59:13
I would eat in a tire one entire big, massive pizza bought for myself. I’d go buy one and just smash it. And now there’s no way I could eat that much pizza. I don’t understand where it used to go, Eric. I don’t know where it went.
Eric Jackson 59:32
Yeah, I think that wasn’t my process. But my process was I know where I’m going, I’m going to buy it. I’m going to eat it and then the next day I’ll be better.
Bill Gasiamis 59:41
I was always worse the next day. But I never connected the two I never knew that the next day after eating. Something that I shouldn’t have eaten was similar to a hangover from alcohol. I used to have after-effects, the day after I’d be bloated or, I wouldn’t feel well, I was never very overweight. I was never above 210 pounds.
What has stroke taught Eric Jackson
Bill Gasiamis 1:00:09
But my biggest weight was probably about 210 pounds. So, you know, that was maybe my biggest way ever. So I was wondering whether or not you’re comfortable, or not comfortable and will be able to share what stroke taught you.
Eric Jackson 1:00:35
Now, well 10 years ago, it taught me that it told me no have something to do every day, maybe wasn’t like that before, you know, very, almost boring, go to work, come home, do whatever. Now it’s wake up, and I have to rehab I want to get back to whatever normalcy is that most people, I guess, you know, complain about.
Eric Jackson 1:01:10
And so that was my mindset for a couple of years. You know, I see people do were up the stairs. And I said, Well, I’d like to do that in due time. And I would, I would see someone maybe run across the street. And I would say, I would like to do that, you know, someday. So I had I had, I had things to accomplish that I never thought of before the stroke.
Eric Jackson 1:01:37
So it was more or less a purpose of, you know, starting over again, square one, you know, I’m a little kid trying to walk again, you know, I’m trying to speak again. That’s where my mindset was. And it still is today, because I’d like to do it. I don’t know what I can do to make my speech better. But maybe I’ll maybe I’ll find out.
Eric Jackson 1:02:01
And as far as maybe getting more strength back in my right side to do more exercises, maybe I’m going to I’m going to start yoga. And just to see if I can even improve on what I am right now. So even 10 years later, it’s it’s something to do. And so I just don’t wake up and you know, do the normal things. It’s always something to do.
Bill Gasiamis 1:02:31
That’s fantastic. So this is a similar kind of question, but it’s different. In that, what would you say to somebody who’s listening to this episode, who has just been through a stroke? Who’s going through it now? What would you say to them, if they came across you? And you could tell they were doing hard and doing tough?
Eric Jackson 1:02:59
Well, like I said, every rehab process is different. It’s unique. Everyone has their rehab process. And you have to think that it’s, it’s a marathon, it’s not a sprint, you’re not going to be AOK, three days later, it’s going to take time, and it’s going to take a lot of patience. And if you can still do that, you know in you is as long as you do what you want to do every day as far as Rehab Time is going to tell you a lot of things.
Eric Jackson 1:03:38
And after a certain time, I think I mean, you’re going hopefully you’re going to improve. And if you’re going to improve that is going to greenlight you to do even more. And it’s just going to, and that’s and that’s that was my mindset every day, every week, every month. I was like, You know what I’m going to do where I want to do, and it’s going to take time. And again, a marathon, not a sprint, every day. Have your support system with you. And you know, it’s difficult, but don’t give up. I mean, don’t give up.
Bill Gasiamis 1:04:25
It sounds like you never had a deadline I’m going to, for example, run up the stairs by next week. Sounds like you never had a deadline. It sounds like you always had a goal and that you were just working towards it and you would give it a try. And then if you didn’t succeed, you would just work towards it and give it another try. Is that accurate? Is that how it was?
Eric Jackson 1:04:48
That’s accurate. What happened is, going back to the enterprise job. Sometimes we’ll deliver cars to a certain building and you I would work with a partner and and realize that we have to go up, you know, five steps. And I will go, oh, wow, I don’t know if I can do that. As long as there was a real thing, I can do it.
Eric Jackson 1:05:11
And so, you know, 20, say 20 Steps went up, use a railing, I was okay. And I’m just thinking, you know, hopefully, maybe in a month or so, I can go up the steps without the real and just go very slow and not trip. And that’s exactly what happened. And downstairs is even worse, but the same thing. It’s, it’s, it’s a challenge to me.
Eric Jackson 1:05:38
That’s what it was. As far as up the steps down the steps, hills stop and start to, you know, maneuver yourself. It was all a talent. It’s something I didn’t have, you know, back then. But I just said in time, I will. And yes, I never had a, you know, a deadline for something. I just said it will come in time.
Bill Gasiamis 1:06:05
Hey Eric, thank you so much for reaching out. Deciding to share your story start being an advocate for stroke, and offer hope to other stroke survivors is appreciated. I enjoyed your story. And I wish you well, with everything going forward.
Eric Jackson 1:06:24
Thank you very much, Bill. I mean, I woke up and I said, I’m looking forward to this. And I had a great time. And it’s very therapeutic to tell your story. And I hope people watch and hopefully, if I can reach one person that’s good enough for me.
Bill Gasiamis 1:06:45
Man. Thank you. Once again.
Eric Jackson 1:06:48
Thank you very much, Bill.
Bill Gasiamis 1:06:50
Thanks for joining us on today’s episode. As always, 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 1:07:05
Thank you to all those people who have already left a review it means the world to me and you are helping others in need of this type of content to find it easier, and that is making their stroke recovery just that little bit better.
Bill Gasiamis 1:07:20
If you haven’t left a review and would like to, the best way to do that is to leave 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 the episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice. Thank you again for being here and listening. I appreciate you see you on the next episode.
Intro 1:07:46
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 1:08:03
All content on this website at any length blog, podcast, or video material control. This website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis, the content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:08:26
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 1:08:48
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 1:09:07
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 Aphasia Recovery and Ischemic Stroke Recovery, 10 Years On | Eric Jackson appeared first on Recovery After Stroke.
1 hr 10 min
September 11, 2023Anxiety and Depression Amidst Stroke – A Comeback Story | Angie Read
The Book Invisible Scars Free PDF Download
Understanding and Managing Depression and Anxiety After Stroke
In the wake of a stroke, survivors and their caregivers often grapple with numerous challenges. Among these challenges, one that frequently emerges is the prevalence of depression and anxiety. In this comprehensive guide, we delve into the intricacies of depression and anxiety after a stroke, shedding light on crucial aspects and offering valuable insights to help survivors and their caregivers effectively manage these mental health conditions.
The Prevalence of Depression and Anxiety After Stroke
Key Statistics
One in Four Survivors: Shockingly, statistics reveal that one in four stroke survivors will experience depression and anxiety after their ordeal.
Pre-existing Conditions: It’s important to note that some survivors may have had depression or anxiety before their stroke, and the risk of exacerbation is higher in such cases.
The Silent Struggle
Recognizing the Signs
Depression and anxiety often manifest subtly after a stroke. It’s imperative for survivors and caregivers to be vigilant and recognize the signs early on:
Persistent Sadness: Survivors may experience prolonged feelings of sadness, hopelessness, or emptiness.
Anxiety and Worry: Anxious thoughts about the future, health, or recovery are common.
Social Withdrawal: A sudden withdrawal from social activities or interactions with loved ones can indicate underlying emotional distress.
Sleep Disturbances: Difficulty falling asleep or staying asleep may be indicative of depression or anxiety.
Changes in Appetite: A sudden loss or gain of appetite is a potential red flag.
Physical Symptoms: Unexplained aches, pains, or headaches can accompany these mental health conditions.
Causes and Triggers
Understanding the Factors
Depression and anxiety after a stroke can stem from various factors, including:
Brain Changes: The physical impact of a stroke on the brain can disrupt mood-regulating pathways.
Emotional Adjustment: Coping with the aftermath of a stroke can be emotionally taxing, leading to these conditions.
Medications: Some medications used in stroke recovery may have side effects that contribute to depression or anxiety.
Social Isolation: Limited social interaction post-stroke can lead to feelings of loneliness and depression.
Fear of Recurrence: The fear of another stroke can be a significant trigger for anxiety.
Seeking Help and Support
The Importance of Professional Assistance
Survivors and their caregivers should never hesitate to seek professional help. Mental health professionals can offer invaluable support through:
Therapy: Cognitive-behavioral therapy (CBT) and counseling can provide coping strategies.
Medication: In some cases, medication may be prescribed to manage symptoms.
Support Groups: Joining support groups for stroke survivors can help alleviate feelings of isolation.
Caregiver Support: Caregivers too must prioritize their mental health and seek assistance when needed.
Self-Care and Coping Strategies
Empowering Survivors and Caregivers
Empowerment plays a pivotal role in managing depression and anxiety post-stroke. Here are some effective self-care strategies:
Regular Exercise: Physical activity can boost mood and reduce anxiety.
Mindfulness and Meditation: Practicing mindfulness can help manage stress and anxiety.
Healthy Diet: A balanced diet supports overall well-being.
Hobbies and Interests: Engaging in enjoyable activities can be therapeutic.
Open Communication: Encouraging open conversations within the support network is crucial.
Conclusion
In conclusion, depression and anxiety after a stroke are prevalent but manageable conditions. Survivors and caregivers should be vigilant in recognizing the signs, seek professional help when needed, and prioritize self-care strategies. By addressing these mental health challenges head-on, survivors can embark on a path to a more fulfilling and emotionally balanced life.
Remember, the journey to recovery is unique for each individual. With the right support and strategies in place, the shadow of depression and anxiety can be lifted, allowing survivors to reclaim their lives after stroke.
Recovery After Stroke Podcast Episode 267
Angie Read experienced an ischemic stroke caused by 2 blood clots simultaneously. She has overcome anxiety and depression and has written two books about her experience.
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02:33 Introduction
04:09 Early morning ischemic stroke
15:18 Running a business while in the hospital
24:22 Anxiety And Depression After Stroke
29:26 Physical recovery vs. mental recovery
34:21 Cold-hearted neurologist
40:35 How to choose your team of doctors
50:33 How Angie Read decided to go back to work
59:46 The importance of having a plan of attack
1:09:18 You just need a little help
1:18:11 Hardest thing about the stroke
Transcript:
Angie Read 0:00
I had Generalized Anxiety Disorder, I was diagnosed with that and major depressive disorder. And so I had like these two storms happening in my head like one that made me want to go go go and do everything and solve all the world’s problems.
Angie Read 0:14
And another just wanted me to stay in bed and just, you know, keep my head under the covers and just hide away from all my insecurities and hide away from all the demands and pressures from my job, I had to be hospitalized twice in an inpatient mental health facility just to address my that I was in crisis mode.
Angie Read 0:14
But that saved my life. I’ve since learned that post-stroke anxiety and post stroke depression are very common. And there’s just not enough. They don’t tell you about it or they don’t when they say watch for signs. I mean, everyone experiences depression differently, everyone experiences anxiety differently.
Angie Read 0:58
I really wish and this is kind of what I want to get out there is that we should have mental health therapy as part of our rehab. So as when you’re going for physical therapy, occupational therapy and speech therapy, they should also offer mental health therapy and help you just get ahead of it. And somebody should have said Angie, do not go back to work after eight weeks.
Intro 1:27
This is the recovery after stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:40
Hello, and welcome to the recovery after stroke podcast. If you are a stroke survivor with a story about your stroke experience, now is the perfect time to 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 is be a stroke survivor who wants to share your story in the hope that it will help somebody else who is going through something similar.
Bill Gasiamis 2:02
If you are a researcher who wants to share the findings of a recent study or you are looking to recruit people into studies, you may also wish to reach out and be a guest on my show. If you have a commercial product that you would like to promote that is related to supporting stroke survivors to recover. There is also a path for you to join me on a sponsored episode of the show. Just go to recoveryafterstroke.com/contact. Fill out the form, explain briefly which category you belong to.
Introduction – Angie Read

Bill Gasiamis 2:33
And I will respond with more details about how we connect via Zoom. Now this is episode 267. And in today’s conversation, I’m joined by Angie Read who experienced a stroke at age 46. And has overcome some major challenges including depression and anxiety, and written two books about stroke recovery. The first being called Invisible Scars, the second titled Mental Health Hacks. And the third, which is not yet available, that will be soon is called Identity Crisis: You Are Not Your Career.
Bill Gasiamis 3:09
Now, just before this interview gets underway, I wanted you to know that Angie has been so gracious to share with me a link that enables listeners of this episode to download a free pdf version of her book invisible scars from Amazon, there’s only one catch. Well, it’s more like a request. If you do download the book and enjoy it, please leave a review on the Amazon page of the book.
Bill Gasiamis 3:37
Because that is how Amazon understands if the book is a good read and worth suggesting to other people looking for this type of content. Basically authors live and die by reviews on Amazon. So everything you can do to help will support other stroke survivors receiving great suggestions of helpful books. That’s it for now. It’s on with the show. Angie Read, welcome to the podcast.
Angie Read 4:04
Hi, thank you. Thanks for having me.
Bill Gasiamis 4:06
My pleasure. Thank you for being here. Tell me a little bit about what happened to you.
Angie Read had an early morning ischemic stroke
Angie Read 4:09
Well, let’s see about six just a little over six years ago, I was 46. I got up one morning or tried to get up one morning, couldn’t get out of bed, couldn’t feel anything on the left side of my body. It was very surreal. I didn’t know what was happening to me. I just thought maybe I was still half asleep.
Angie Read 4:09
But I was kind of shaking the bed as I was trying to get my body up and and get up out of bed to go take a shower and get ready for work. And I woke my husband up and he said, what’s going on? What are you doing?
Angie Read 4:48
And I said I’m trying to get up and take a shower and it came out all garbled. And he said You sound drunk. And I said it’s 6:30 in the morning I’m not drunk and he said I’m getting up He got up turned on the light look looked at me and said, your face looks like it’s sliding off. On the left, you’re having a stroke I’m calling 911. And I said, don’t call 911. I’m sure I’m just still asleep. And he said, You are not making any sense. And thank God, he didn’t listen to me because I was in the middle of having a pretty massive ischemic stroke.
Angie Read 5:22
I had two clots one in my neck and one in my front temporal lobe, right-left, right side. And I had to be rushed to the hospital. The EMTs came, took me to a hospital that’s like a mile from my house. And they did a CT scan, it showed the clots and then they rushed me down to a hospital Downtown, Kansas City. And they did an emergency thrombectomy where they went up through an artery in my groin, all the way up and like, into my brain and pull the clot out. And I was awake for the whole surgery.
Angie Read 6:00
I only remember bits and pieces of it. But then I woke up in the, the Neuro ICU and the nurse was asking me if I could raise my arm and I could, and it was maybe maybe an hour and a half after I got there. I don’t know. I lost all track of time.
Bill Gasiamis 6:19
You’re so considerate about the guys at 911.
Angie Read 6:24
What about it?
Bill Gasiamis 6:26
You’re considerate about it. You didn’t want to wake them?
Angie Read 6:31
I don’t know. I just I didn’t know how serious it was. I mean, I was 46 otherwise very healthy. I mean, it was completely out of the blue. So it just I yeah, I didn’t want to waste anybody’s time. I thought they’re gonna get here. And I mean, I really honestly I didn’t, I didn’t think too much about it. It was just kind of a, a reaction, don’t call 911 I’m sure I’m fine. That’s kind of always been my MO You know, I just, I’m fine. I rub some dirt on it and brush it off and get up and go.
Bill Gasiamis 7:04
You had two clots. So how to two clots form? And was there an underlying cause?
Angie Read 7:12
I’m not sure how to clots formed, they originally thought I might have had a carotid artery dissection. So CAD, turns out that I didn’t so I don’t know how that are that clot got on my neck. They think after a series of you know process of elimination that it was because, I have a high factor a clotting factor in my blood. And then I was on birth control pills. And I also had suffered from migraines my entire life. And actually the weekend before I had the stroke. I had the most severe migraines for two straight days that I’d ever had.
Angie Read 7:52
And kind of crazy because I actually went to the ER for the migraines. My sister was an ER nurse at the time and she said come in check yourself and we’ll get you like an IV cocktail for the, for the migraine. And I complained to the to the ER doctor on call that night that my because I get migraines with auras where I get like a C shaped blind spot and one of my eyes. And that blind spot had just gotten bigger and bigger over the weekend, which had never happened in my life. And so they did a CT scan. But that CT scan scan came back totally clear.
Angie Read 8:27
And that was two days before the stroke. And so I don’t know, I mean, process of elimination, they think it was a combination of birth control pills. And my high factory. I don’t know. So it’s it’s still one of those things. It’s like, sometimes you don’t get a definitive answer, but you get like a process of elimination. So that’s, that’s my story, and I’m sticking to it.
Bill Gasiamis 8:53
Sure enough, birth control pills seem to feature in a lot of the interviews that I do with women who have had strokes. And is it something that you were aware of before you were prescribed? The, the birth control?
Angie Read 9:07
You know, I hate to say no, because any smart person should read the, you know, the fine print on any medication and they do want a risk of heart attack and stroke. But with every medication that’s basically a risk factor I’ve been I had been on birth control pills on and off since I was a teenager. You know, the only reason I was on birth control in my 40s was to control my cycle.
Angie Read 9:36
And I am I was very angry at my general practitioner for not warning me and not saying as a woman in your 40s this is probably not a good idea and warning me about you know the the potential risks, but she she never did and I didn’t ask because I’d been on them for so long. It was just kind of like I have never had a problem. I’ll be fine. So and I had, you know, no history of high cholesterol, blood, high blood pressure, I didn’t ever smoke, I’ve always been a very, very healthy person. So, I didn’t, yeah, it just didn’t factor into my decision.
Angie Read 10:13
And, gosh, if I could do it over again, I would, I would have jumped down my throat and said, do not do not even consider being on birth control in your 40s. It’s just it’s not, it’s not necessary. There are other ways to control your cycle. There are other things you can do, then beyond, you know, hormones.
Bill Gasiamis 10:32
Yeah. That being said, Have you been able to move ahead from the anger that you had around that? Has that something that has been able to subside? Is it still there? Have you even thought about it?
Angie Read 10:45
Yeah, you know, I’ve thought about it, but I don’t spend a lot of my life just, you know, sitting in a place of anger, because it only you know, it only makes me miserable. And I just I try to forgive and move on. And it’s not like, My doctor was trying to hurt me or be, you know, be anything other than professional.
Angie Read 11:05
I just, it is what it is. And I just had to have to accept it and move on. And I’m very lucky. So I feel like I don’t have much to be angry about I’m have regained like 99.9% of my, you know, my capacity, my facilities, my physical, everything. So I have nothing to be angry about.
Bill Gasiamis 11:27
Yeah. Fair enough. What kind of work were you doing at the time? Actually, what was your life like? How busy was it? What were you up to?
Angie Read 11:36
Yeah, busy. So I had just written my first book. And it was a marketing book. Because I’ve been in marketing and communications for about 30 years.
Bill Gasiamis 11:44
Okay, what its called? just in case any marketers listening, and they want to do what’s it called?
Angie Read 11:50
The first one is called marketing to Gen Z. So it’s about marketing to the youngest generation, well, no longer the youngest generation. Now there’s Gen Alpha. Gen Z is the generation right behind millennials. And I was, I was fascinated with Gen Z for close to a decade. And I, I have three kids. They’re all Gen Z. And I just, I kind of felt like I had this focus group of three at home.
Angie Read 12:16
And I just what I was seeing and learning about this generation, every marketer at the time that I knew everyone was focused on, how do we crack the net with marketing to millennials, and nobody was talking about Gen Z. And I was like, Hey, we should start talking about the next generation, because we all got caught off guard with millennials. And so let’s get ahead of this next generation. And I started doing my own research and, and I realized that they’re just so fascinating. And I just, I had a passion for that.
Angie Read 12:48
So I had just finished my book, I turned it into the publisher. And then I was I had gone to, to speak at a couple of conventions, speaking gigs that I had for my, for my work, I worked at an agency at the time, a marketing agency, and they foot the bill for me to write that book. So that’s what I was doing up until then. And yeah, very, very busy life raising three kids, always been very active, very involved in professional organizations and just kind of always have to have something going on.
Bill Gasiamis 13:25
So then, you wake up one morning, what the routine of that day was completely, obviously thrown out the window. What was you meant to be doing that morning? And how does the family react and respond? I know your husband said 911 for you, but how does the rest of the day unfold? What happened?
Angie Read 13:47
Ah, let’s see. Well, my oldest son who was just getting ready to start college at the University of Kansas, which is only like 30 minute drive from where we lived, but he was getting ready to move in and go to college. But he, my husband had him come in and watch me while he called 911. Because I was still trying to get up and go to work. It’s just, I, you know, my work ethic, it was not going to stop it was just like, I’m going to be late. I’m gonna get in trouble.
Angie Read 14:17
I’m gonna be late. I gotta go. And so my, my son, who was a lineman football player, all through high school, really, really big kid came in and like, tried to hold me down so that I wouldn’t get out of bed and hurt myself because I was about to probably fall out and and hurt myself. As the EMTs got there, my middle son was just getting up and he came out of his room just as they were wheeling me out and down the hall.
Angie Read 14:47
And he freaked out like what the heck is happening, where’s mom going? And so that was a rude awakening for him. And then my daughter who was in middle school at the time, she didn’t know anything until They woke her up and told her, my older step son came over to hang out with the kids that day just to help them, you know, stay calm. And then he drove them down to the hospital after I was out of surgery, and it was clear I was going to be okay.
Angie Read running a business while in the hospital
Angie Read 15:16
And then I was supposed to be in a meeting that day I was getting ready to travel to New York like the following week. And I was putting some finishing touches on a presentation. And I just, I remember, I got a phone call. And I actually took the phone call from the hospital bed, because I felt like, oh, I have to let this person know that I probably won’t be there next week. And it was, it was strange.
Angie Read 15:43
I remember taking the call. And she’s like, you know, it was a weird, regularly scheduled meeting. And I said, I’m so sorry, I’m in the hospital, I had a stroke. And she’s like, Why are you answering your phone? Well, I have to wrap up some loose ends, I guess. I don’t know.
Bill Gasiamis 16:00
Yeah, we don’t just become a non business people or workers or whatever we were just because we had a stroke the stinks to do, I was running my business, from my hospital bed for the first seven days that I was in hospital, absolutely, taking phone calls, sending emails, writing up quotes, doing everything, just taking the taking the admin role over, and then had the guys running around doing their thing. And for me, it was business as usual. But I was in hospital, I wasn’t allowed to leave.
Bill Gasiamis 16:35
But that’s, that’s the identity is there, and your obligations are there. And the things that you know, are on the to do list are still there. So you’re, I think one of the defaults that happens is you just try to go about life as per normal. And that’s what I did. And I think it helped. But it was also the reason why I didn’t go to hospital because my symptoms came on. Very gradually, it started with my left foot, and then it spread over seven days, and my entire left side was numb.
Bill Gasiamis 17:10
But because it’s so it was so gradual. And because my identity was so deeply embedded in the you go to work, you know, you do this, and you do that. I just did that. And I ignored everything and said, Well, there’s nothing wrong with me, even though multiple people asked me over the seven days before I went to hospital, because they could tell there was something wrong with me. But even though I knew there was something wrong, I played it down.
Angie Read 17:40
Yeah, it’s probably it’s probably pretty common to do that. And because it’s also, it’s hard to believe that something like that is happening to you. I mean, young people, it’s not supposed to happen to us, you know, young people I was. I was in my 40s I was 46, almost 47. I’m in my 50s now, but it still feels like I’m too young to have that have that happened to me, even if it happened to me today. But it’s very common, you know, strokes are more common among young people than than most people know.
Bill Gasiamis 18:12
Yeah, it’s the leading cause of disability. Worldwide.
Angie Read 18:16
Yeah. Yeah, I’m, I am so grateful every day that my husband did not hesitate. He did not listen to me for once in his life. That’s probably the only time I will tell him it’s okay that he didn’t listen to me. But I mean, I even a minute longer. Who knows? Who knows what would have happened? Yeah, but it’s you do you just keep going on autopilot. And, you know, it was hard for me very, very hard for me to take a step back from my career when I had to be on disability for a while. And I want to just jump right back in and finish up my book.
Angie Read 18:57
It had come back from the publisher with some edits, and I just, I didn’t want anyone else editing for me, but because I was in disability. They wouldn’t let me even touch it. And so and that was hard. And so I rushed to get back to work, which was probably a huge mistake.
Bill Gasiamis 19:14
How long were you in hospital for
Angie Read 19:17
four days?
Bill Gasiamis 19:19
Okay, so you rushed to get back to work. How quickly did you get back to work?
Angie Read 19:26
Probably eight weeks, seven or eight weeks after? I mean, I was supposed to be on I was on short term disability which lasts, you can get up to 12 weeks. But I was also going stir crazy at home. I wanted to get back I wanted to get my you know, get back into my life. And I thought I was ready. Because I could walk I could talk I had passed all my physical, occupational and speech therapy. And so it was kind of like okay, I’m cured, ready to go back to work.
Bill Gasiamis 19:56
But you weren’t so what were your experiences like when You went to work? What did you feel that you thought? Okay, things are not exactly right.
Angie Read 20:08
You know, right off the bat, I started feeling very well, I had a lot of anxiety at the time, I didn’t label it as bad, I didn’t really know what it was, I just felt very uneasy at work. And I just, I felt like I was losing control of my ability to write. And, you know, that I wasn’t writing as I go, you know, he’s lovely as I had before, or easily as I had before, and then I started feeling very, I don’t know, I I think it was from some of my medications, but I wasn’t sleeping very well at all.
Angie Read 20:48
And I saw I was having horrible insomnia, which then started feeding this beast inside of me of anxiety and depression. And I wasn’t eating, I had no appetite. And I just, I knew I needed to have nutrition and proper sleep to for my brain to heal. And I couldn’t do either of those things. And then I was trying to, you know, be superwoman at work and not missed a beat. And I was having so much trouble feeling like I could even write. And here I was, like, trying to edit my book.
Angie Read 21:21
And then what struck me was I started to get very obsessed with some of the small details of the book. And I’ve never been an obsessive personality. But I got very, very obsessed about the details, like even the endnotes in the footnotes, I was, I was freaking out over them. And by Thanksgiving, so I went back to work in mid September, by Thanksgiving of that year, I was just like, completely tired, completely, just, I had lost 20 pounds, just in two months, weight from not eating, and I just, I couldn’t think straight.
Angie Read 22:03
And I was I was miserable. My parents said that I was like a shell of my former self. And I had, my voice had no effect. I wasn’t, you know, had no intonation or inflection, I would just kind of I was very monotone. And I, I say I had a nervous breakdown. I know that’s not like a medically appropriate thing to say anymore. But it’s the only way I can describe it. I just, I couldn’t function. I didn’t know if I, if I had brain damage from the stroke that was keeping me from being able to write or what was actually happening.
Angie Read 22:43
I’m looking back at it. Now I was able to write it’s not that I wasn’t, I just had lost like all my self confidence, and I was just in a really bad place. Before I left hospital, they told me to be on the lookout for signs of anxiety or depression. And because it’s common among stroke survivors, am I okay? Never had anxiety, or depression really in my life before? Well, I had some anxiety like low grade anxiety, I call it I had never had like, whatever they call it, I can’t think of the word right now. But
Intro 23:19
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. Like how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things that obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 23:43
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 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 24:03
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, recovery after stroke.com and download the guide. It’s free.
Anxiety And Depression After Stroke

Angie Read 24:22
I had Generalized Anxiety Disorder I was diagnosed with that and major depressive disorder. And so I had like these two storms happening in my head like one that made me want to go go go and do everything and solve all the world’s problems. And another just wanted me to stay in bed and just, you know, keep my head under the covers and just hide away from all my insecurities and hide away from all the demands and pressures from my job.
Angie Read 24:48
Had to be hospitalized twice in an inpatient mental health facility to just to address my just, I was in crisis mode. But that saved my life. And then I had to go on disability again to be out for intensive therapy and intensive medical treatment to help with those conditions was horrible. It’s I’ve since learned that post stroke anxiety and post stroke depression are very common. And there’s just not enough.
Angie Read 25:20
They don’t tell you about it or they don’t when they say watch for signs. I mean, everyone experiences depression differently. Everyone experiences anxiety differently. I really wish. And this is kind of what I want to get out there is that we should have mental health therapy as part of our rehab. So as when you’re going for physical therapy, occupational therapy and speech therapy, they should also offer mental health therapy and help you just get ahead of it. And somebody should have said, and Jay, do not go back to work.
Angie Read 25:55
After eight weeks, take your full 12 weeks or getting paid. Take your full 12 weeks, I probably still want to push back just my personality. But somebody should have said Don’t I know my family was like, wow, that’s too fast. But I’ve never been one that, you know, to slow down. I’ve always been kind of set to go mode.
Bill Gasiamis 26:17
Yeah, yeah, it is an interesting conundrum that people like you face, it’s that, that I hear that a lot, the I was at home going stir crazy. And if you’ve and I’m not sure what’s behind that for all the people that say that to me, other than they don’t know how to rest, and how to switch their mind off and how to heal and recover. You know, it’s a brain injury is not like a broken foot, you don’t have a timeline on it, it doesn’t say, well, within six weeks, the plaster cast will come off, then you’ll do a little bit of therapy rehab work for and then you’ll be fine.
Bill Gasiamis 27:00
And it’ll be healed and to be good as new. If if I can share anything with people about stroke recovery, it’s that you have to do things differently. Once you’ve had a stroke, you just have to because doing things the same way is what the way that you’re doing things, what got you into the mess you’re in, so to speak. And and what you don’t want to do is replicate the conditions that supported you getting into the trouble that you got into, you want to change things up a little.
Bill Gasiamis 27:32
But I get what you’re saying because it’s very common i i probably was similar in that I was going a little stir crazy. But then I occupied I found ways to occupy my time that were not out of the house or work related. And that made it a little bit easier for me to not have to overthink things and focus on things that were no good or weren’t right. So I just threw myself into a little bit of volunteer work for the Stroke Foundation here in Australia. And anything I could say that I had. So that had something to do on a particular given day.
Bill Gasiamis 28:12
And then if I had a task to do whether it was just go to the shops and get some groceries to bring them home to try and prepare a meal. That was good enough. It was just anything that I could do then sitting on my bum and just overthinking things. I wasn’t typically an over thinker, I had negative thought patterns in that I didn’t believe in myself. And I didn’t believe that I was capable of great things in business or amazing things in my personal life or whatever. I just always had doubts about my abilities.
Bill Gasiamis 28:46
But I never spent time overthinking that it was just an embedded personality trait. So I was lucky that when it was time for me to stay at home and heal, I could stay in him and he’ll sometimes had people come and visit me bring me out take me to lunch or go grab a coffee or something. And and that was enough to get the ball rolling. I visited my parents or stayed at their house for a few hours every once in a while. Anything I could do, but I I get what you’re saying and I love I love your purpose being that.
Physical recovery vs. mental recovery

Bill Gasiamis 29:26
Stroke is not just a physical recovery. It is an emotional, it is a mental recovery and is it and it’s a physical recovery is the thing that I go on about all the time and you can’t heal from stroke fully. If all you’ve done is the physical recovery, you just can’t because I often get paid often got people looking at me and going and you might experience this as well as Oh my God, you look great. And you might have looked great because of the shell that you’re in.
Bill Gasiamis 29:55
Looks okay. But then inside Beneath the layers of that shell, there’s all of the stuff going on the independence loss, the inability to think properly, the inability to work, the way that you were, the lack of energy, you know, your identity has changed your job become mortal all of a sudden, and you gotta have to, some people have to wrestle with that and grapple with that and try and work out what does that even mean? And then your relationship changes, because you can’t be the same way that you were with your family, your children and your wife or your spouse.
Bill Gasiamis 30:36
And it just, it’s turmoil. And the, the hardest thing was knowing how to engage in a conversation with somebody who said, Oh, my God, you look great. Are Okay, so where do I go from here? Do I tell you that looks can be deceiving? Do you need to hear that from me right now? Do I need to tell you that I’m having a mental health day? Crisis? You know, how do you how do you move on from You look great. And the Yeah, filling surance companies to come on board, you know, the insurance companies need to come on board.
Angie Read 31:20
I felt guilty. I think that I you know, I didn’t look like a typical stroke survivor, or, you know, but I still, you know, I’m sorry, I still felt a little sorry for myself, because I could feel it inside. I knew I couldn’t speak as well as I did before words took a little while longer to come to me, I did not have aphasia. But I had, it was harder for me to think about words. And I’ve always been good in front of a crowd.
Angie Read 31:48
I’ve always been very self confident. And I, my confidence took a big hit. And yeah, you are kind of in denial about the fact that something like this happened to you? And it’s it’s kind of embarrassing, because it’s like, what, why did I you know, did I do something to cause this? Or what happened? I mean, when I say oh, yeah, I was on birth control pills. And that’s why it’s kind of like, well, how stupid was I that I didn’t know that that was, you know, an issue.
Angie Read 32:20
And, and also, then, when I was hit with all the emotional, the mental health issues, I didn’t know what I was dealing with. And to me that was it felt like personal failure. And I am not, I am not one to fail. I, I’ve never failed at anything. And I felt like I was failing. And you know, and my doctor when I went back to a very high stress job, and I went back to a job that was not, it wasn’t a soft place to land after having a major health crisis. Nobody understood what I was going through.
Angie Read 32:54
Nobody seemed to I mean, they people cared. But I hadn’t worked at this place very long, maybe a year and a half. But I just didn’t feel like I had a lot of emotional support. Or that they were like, handling me with kid gloves, because I told them, I didn’t need any accommodations. Physically, I’m fine. I don’t need anything. So they immediately expected me to produce at 110% Like I always had, and that pressure to perform.
Angie Read 33:22
And the pressure that I was putting on myself was just too much for my, my healing brain to handle. And I didn’t you know it, you don’t know until there you have hindsight. Now, six years later, I can say, oh, gosh, Auntie, why didn’t you just take this 12 weeks or longer if you needed it, and really, you know, get to a place where you could understand what was happening to you. And but you know, you have to go through it. And you have to live through it yourself and learn your lessons yourself.
Angie Read 33:54
But I’m just, you know, there was a time when I really wondered why I even survived, I wanted to die. And I’ve always been a very happy glass half full person, very, very positive and always upbeat and had always had a very, you know, just positive outlook on life. And there was a time where I thought, why did God Spare me, I shouldn’t have survived this stroke. Now I just want to die.
Cold-hearted neurologist
Angie Read 34:21
My life is empty, and I don’t have anything to live for. And thank God, I didn’t follow through on any dire consequences, but I considered it and yeah, I mean, that’s, it’s, that’s the scariest part of all is that I got to such a low dark place with my mental health and I asked my neurologist at my next neurology appointment, I said, Hey, what’s happening to me? I don’t understand what’s happening to me.
Angie Read 34:52
This is not who I am. And he said, Well, that’s psychological, not neurological. You’ll have to see a psychiatrist or psychologist. And he was so unkind about it. He was so just cold and matter of fact about it. And when I was bawling in his in his exam room, he got up and walked out of the room and never came back. My husband was there with me because I couldn’t drive still at the time. And we just looked at each other, like, did he just say what we think he said? Wow, how does cold hearted and just just mean, honestly.
Angie Read 35:33
And I’m like, I am not an over reactive type of person. But I was just looking for answers and for him to basically dismiss me like that was it was just shocking. I had never had a doctor, treat me like that and just totally dismiss me. I ended up having another stroke, smaller stroke, eight months after my first one, and I probably never would have known about it, but I was in a car accident. It was my fault. I was completely out of it. I ran a red light T boned a car. Thankfully, we both walked away nobody was hurt.
Angie Read 36:12
Could have been much much worse. But I did go to the ER that night because I said I’m on blood thinners. I don’t think I hit my head. But it probably wouldn’t be a bad idea to go get checked out. And long story short, I ended up i They sent me home that night on painkillers and muscle relaxers. The next morning, I fainted when I got up to take my medicine in the morning I fainted. And to scare the crap out of me. I almost just went back to bed and didn’t do anything. But I called my sisters. And they were like, Hey, that’s not right, you need to go back to the ER.
Angie Read 36:49
So I went back and said, I just survived a stroke. And this happened to me. I was here last night after a car accident and they did a CT scan. And then they did an MRI and they saw what they called new stroke activity. The the neurologist at the hospital saw me. And this was not like a specialized stroke hospital. Like the first one that I went to this was the closest one to the car accident I was in. And the neurologist came in and she had like tears in her eyes.
Angie Read 37:22
And she said, Oh sweetheart. And she just kept putting her hand on my shoulder saying, I did not expect to see somebody in such good shape as you when I came into this room just based on your scans. She’s like, you’re so blessed. You do not know how blessed you are. But yes, you have had no stroke activity. And and I said, Hey, since I’ve got you here, as a neurologist, what would what do you think about the is there a connection between strokes and anxiety and depression? And she said, Oh, yes, it’s it’s probably 50% or higher.
Angie Read 37:59
And I said, Well, my other neurologists told me that it was, you know, basically told me it was all in my head. And it didn’t have anything to do with a stroke. And she said, I’ll be right back. She came, she can’t she left. She came back a few minutes later with printed scientific studies, that proves the connection between stroke and depression and anxiety. She said, I promise you she’s like that he is not up on his science. He should not have told you that. And I switched to her on the spot.
Angie Read 38:27
I said, Can I switch to you? Can you be my neurologist going forward? I mean, it’s almost like you have to ask permission, right? Like I had. This is the other neurologist that has seen me since the beginning. But your Kinder your you seem to get me better. I like your bedside manner better. Will you please, you know, be my neurologist from now on. And it was also at that point, I think I realized that I get to decide who my medical team is. I switched primary care physicians for the same reason.
Angie Read 38:59
She after my stroke when I was having mental health issues, she was putting me on different medications that were giving me horrible, horrible side effects. And I was begging her to take me off of them. And she just kept giving me the line. Well, you have to give it time, give it time, give it another week, give it another week. I’m like, I’m not eating, I’m not sleeping. I feel horrible.
Angie Read 39:19
I feel like I’m a chemo patient actually. And you’re telling me to stay on this medication that’s making me sick. So I had a friend luckily I had a friend who was also a doctor and I was calling her on the side and asking for her advice. And she said, Angie, you should not be on that medication. If I were a doctor, I would have taken you off of it by now. Those side effects should have gone away.
Angie Read 39:41
And I said well, can you be my doctor? Is that weird to be a friend and then have you been my doctor and and she said no. I would love to be your doctor. I’m the doctor to a lot of my friends. And so I switched to her. She’s it’s out of the way she’s. It’s a 30 minute drive instead of a 10 minute drive down there. Road, which where my other doctor was, but she takes care of me.
Angie Read 40:04
She loves me she cares. And it’s not just me because it might choose my friend. She’s an excellent, excellent doctor. And she, you know, she’s very, very thorough and she’s always asking, alright, what did your What did they say at your last psychiatry appointment? What did they say? What is your neurologist said, What has your cardiologist Say? Said, because now I’ve got all these specialists, and I’ve, I was able to kind of pick and choose them along the way. And I made sure that I felt comfortable with every doctor on my team.
How to choose your team of doctors
Bill Gasiamis 40:35
That’s something I really advocate for by the way, so I did exactly the same thing. My first group of doctors at the first hospital, they got sacked about seven weeks into my whole experience. And I went to a new hospital. And I found a new team of people. And I felt really calm, really comfortable, really supported.
Bill Gasiamis 40:58
And, I’m going to generalize here a lot. It was the team previously was being led by an older 70 plus year old man. And the new team was led by a probably 50 something year old, female. And it was just a completely different experience. And they were talking about me at the first part of the diagnosis and the medical support.
Bill Gasiamis 41:27
And then at this new one, they were talking with me with me about what was happening and what’s going on. And I was part of the decision making process. It wasn’t just somebody in a bed where they were making decisions on my behalf. So I think it’s another really important point that you raised there, I completely agree with you that you should choose your team of doctors that especially if you’re coming across them, and you don’t like the way that they’re approaching it.
Angie Read 41:58
Yeah, and that’s, that’s a difficult thing to do, because we’ve been kind of a conditioned to doctors and figures of authority are know what they’re talking about. And, you know, neurologists have been trained in this and but honestly, my first neurologist was he, his ego was out of control. And he, I mean, he clearly wasn’t up on the latest science.
Angie Read 42:19
And he wanted to be, you know, an authority figure I found out a couple of years later that he had been, there had been a lot of complaints about him. And he, he ended up leaving town, but he, his ego was just out of control. And sometimes medical professionals just, that’s, that’s their MO, but
Bill Gasiamis 42:44
sometimes also psychopaths, by definition. And I’m not saying that they go around doing nasty things to people, I’m just saying, in order to get to the point of the level of success in a particular career. You know, to be a good neurologist, you have to have certain traits and some of those traits. Not to be empathetic, or for example, when you’re looking at scans, and to be able to make real clinical decisions about what’s happening.
Bill Gasiamis 43:16
So you kind of have to check your emotions in at the beginning of your shift, pop them to the side, do your thing. But then there is a part of that when you’re speaking to a human being, you’re supposed to be able to switch them off now, for him to walk out from the console because you started crying and not come back. Well, that says a lot about a person.
Bill Gasiamis 43:41
And he may be very gifted in his ability to read a scan, and tell you how to resolve a neurological problem. But his clearly his ability to be gifted in that space perhaps meant that he didn’t focus on there’s other things that are also essential in patient care, which is to maybe offer a box of tissues if if nothing else, if you something
Angie Read 44:06
Yes, something be a human being
Bill Gasiamis 44:08
Yeah, just to clean up the snotty nose, you know, whatever.
Angie Read 44:13
Right? I can’t I to this day, I can’t believe he didn’t come back. I mean, I guess he was just like, Okay, your emotional mess, I’m leaving. But there was a that sensitivity chip that was just missing. And I just, I don’t know, but we have to know that. If you are not comfortable with your medical team, you you get to choose You are not stuck.
Angie Read 44:38
I mean, even if you have horrible insurance, you know, or if you don’t have any insurance, you still get a choice and you get to you get to decide who who takes care of you. And um, I think that’s an important lesson and I I’m just so blessed that I was able to find a team of doctors that I feel really, really good at About and they all seem to really care. And they’re not part of the same medical system.
Angie Read 45:05
There’s, there’s different medical systems that the doctors kind of crossover. But, and that was a little bit difficult to navigate, you know, one was through like one medical system and another or through a different one. So sometimes the records didn’t cross over. And, you know, I had to, I had to download everything and keep everything on a disk and in a folder that I had to carry around with me, but
Bill Gasiamis 45:31
foils, yeah, it’s a really cool thing that you write. So I, I advocate for some stroke survivors, and some, and I coached some stroke survivors, and one of the people who I coached was going to a GP, who was really mistreating her, it was a man, this particular lady is in her late 70s. And the conversations that we were having on our regular catch ups were that, you know, he’s just not seeing me, he won’t answer my calls. When he does see me, he doesn’t see me for long enough. And she, that person had been the family physician for 30 or 40 years.
Bill Gasiamis 46:11
And there was a little bit of a while, I’m not sure if it was guilt, or there was some other emotional attachment to that relationship, because that person was also the general practitioner of for the husband before he passed away, in so there was a lot wrapped up in that and to convince her to seek another general practitioner out was quite a task, it was a real big task. It was something that I had to do over time, I had to nudge gently, you know, make her feel confident in the decision, make her understand that her care is more important than the history with this particular person.
Bill Gasiamis 46:53
And it took some time, but we got to that point where she sourced another general practitioner, again, not exactly in the same location, and it was a little bit out of the way. But she, she found a general practitioner, who was much more caring karma, much more encouraging much more thorough spend time followed up with her had her team follow up with her.
Bill Gasiamis 47:19
And it just completely changed her outlook, because she at least felt heard, supported, she felt that she had been advised well, so she could be confident in the advice that was given by the doctors. And she could question her knowing that she could say, oh, I don’t know about that. Or, you know, why did you make this decision? Or why did you put me on that medication, instead of being told no, this is how you’re going to do it. This is not somebody who has been around for five minutes and doesn’t know anything.
Bill Gasiamis 47:49
This lady has been around for 70 plus years. She knows herself, she, you know, she has a database of things that she is experienced in, and you can’t just brush it aside and pretend that you know better than the patient that sitting in front of you, you’ve got to be the doctor has got to be the vessel for support. That’s what they’ve got to be they’ve got to be the vessel for support, not the ego, or the I haven’t got enough time for you. If you’re a GP and you don’t have enough time for your patients. You’re doing something wrong.
Angie Read 48:26
Yeah. I mean, I know that they’re under a lot of pressure from insurance companies and the health system, the this health systems that they’re part of sometimes I don’t know, maybe they have to meet quotas, or
Bill Gasiamis 48:38
I don’t know what what it is, lawns did.
Angie Read 48:42
And that’s fine when you’re dealing with generally healthy people. And you just you just need to see him in and out just a quick checkup and not somebody who’s had a brain injury, somebody who’s had a stroke, not somebody who’s who’s dealing with such serious medical health issues, you know, you need to take a step back. And
Bill Gasiamis 49:02
I received I received an amazing email just a few days ago from another, another stroke survivor who wants to come and share her story on the podcast. And she was a nurse who worked in a hospital on the stroke ward. And, and she and she she’s had a stroke now and she says, Oh my gosh, I had no idea what I was doing. When I thought that I was really aware of how to help and support stroke survivors.
Bill Gasiamis 49:34
I had completely no idea and it’s part of that process is okay, how could you your stroke, you’ve never had a stroke. And you can never know what it’s like and we we don’t wish stroke on anybody. Nobody should have a stroke to know what we’re going through. But her awareness of how ill equipped she was, even though she was very experienced in the stroke Ward just went through the roof because She knew that it was just a completely different game than the one that she had been playing. So she’s keen to come and share that story.
Bill Gasiamis 50:06
And I’m really looking forward to having her on the podcast. Hopefully we can organize it. Angie, we we’ve covered a lot of the before. Let’s talk about the after, because it’s been six years now. So where are you at now? How has life evolved? Have you moved on?
How Angie Read decided to go back to work
Angie Read 50:33
Well, at the advice of my doctors, when I decided when I was ready to go back to work, I mean, it took me a couple of years and a couple of hits and misses in my career to and I took a major detour for a while. At one point when I was on long term disability, and I was I had to be put on long term disability for my mental health conditions, not for physical, but the mental health is just as serious.
Angie Read 51:00
And I, I opened a CBD store, because CBD was something that helped ease some of my anxiety and depression along with, you know, prescription medications, and meditation, therapy. I mean, I’ve done it all, I have done it all. I went through an intensive outpatient program for anxiety and depression, and that probably saved my life. And then I have gone back into a marketing communications career, but I deliberately took a big step back, I’ve always in my career been like climbing the ladder, what’s the next rung on the ladder I can do?
Angie Read 51:40
What’s the next achievement I can, I can, you know, reach for what’s the next big accomplishment. But my friend, my doctor said, I cannot let you go back to a job as high stress, as you’ve been in before, she’s like, if you want to go back into marketing and communications, I need you to take a big step back. So instead of going for a vice president or director role, I deliberately looked for like a middle senior manager role or middle manager role. I wanted to make a certain amount of money because I, you know, have certain bills to pay.
Angie Read 52:16
And I, you know, reached a certain point in my career that I can’t slide super far back. Because I was kind of the main earner in my family. And I still kind of wanted to keep that role. But I didn’t care if I was making as much as before I had the title. That was a huge battle with my ego to be like, Okay, I cannot, I can no longer say Hi, yes, I’m a vice president or a partner at this major communications firm.
Angie Read 52:46
I am, I deliberately took a huge step back so that I could have something less stressful, because stress clearly played a part in my, you know, in my, probably in my original stroke, I mean, stress is, is huge. And so I have since while really taking a big step back, when I was at the height of my depression and anxiety and get just getting over that I needed something to do something to get me out of the house.
Angie Read 53:17
But I wasn’t confident enough to go back to a communications role. So my husband and I decided to take a leap of faith and we opened a CBD store, we became entrepreneurs, small business owners, I did that for about a year and, and having someplace to go during the day having something to do to just build my confidence up little by little, and I’m talking baby step by baby step.
Angie Read 53:40
Finally, I started doing my mark marketing for my own little store. And I was like, oh, gosh, I’ve missed this. I need to get back into this. And so I stepped back into a marketing communications role in the corporate world, a few years later, and now it’s been four years or so. I’ve kind of had some hit or misses because I do find my emotional regulation at work is not as fine tuned. I do let things kind of, I do kind of say things before I think them through and it gets me in a little bit of trouble.
Angie Read 54:19
But I know emotional regulation can also be something that’s very difficult for stroke survivors. Absolutely. And I started writing my story, I started writing a book that I’ve since published, but when I first started writing it, it was really more so that I could document what happened to me document my story for my family. And I I released the first edition of it like three years ago on the third anniversary of my stroke. So can I just send it to I just sent that one to family and friends that was called a brains betrayal.
Angie Read 54:55
But I realized after sharing it with family and friends, I’m like, you know While I didn’t really tell the full story, and so I decided to rewrite it. And because I’m a perfectionist, that’s not a badge of honor, it is. It’s an omission. I’m a perfectionist. So I started rewriting it. And as I did, so, I realized a lot of my story could probably help other people. And so I published a book.
Angie Read 55:24
It’s called invisible scars, stroke, survival, recovery, and the unexpected mental health fallout. And that I published that in July, beginning of July, self published. And I’ve been giving free copies to stroke survivors, asking them to leave some reviews on Amazon, because I really want people to tell me how this this book is affecting them. And if it’s helping them and I, I’ve been, I’ve been speaking to support groups, stroke support groups, also mostly local here, but I’m trying to get the message out that if you are struggling with your mental health, you are not alone.
Angie Read 56:07
And it does not have to be the end all be all there is hope. And there are things that you can do even if you cannot afford to go see a mental health therapist, and I wrote a tiny little book called Mental Health hacks. And it’s 1010 Easy hacks to help manage your anxiety and depression. And those are kind of talked about an invisible scars as well.
Angie Read 56:33
But the the mental health Hacks is a really short little like 40 page, it’s a booklet that just is like easy things you can do yourself like journaling, meditating, getting fresh air, getting the right amount of sleep, eating right. Establishing a routine, but having a routine is key for mental health management. And then one that’s kind of strange, it’s keeping your hands busy. If you’re keeping your hands busy, it’s very hard to be depressed.
Bill Gasiamis 57:09
So tell me about that. It’s there’s something
Angie Read 57:13
between the connection between your hands and your and your brain. But um, I, my therapist recommended that I take up like, try to start crocheting or crafting or knitting or something. My sister is a huge crochet er, and so I said, Teach me how to do this. And I have no patience. And I tried, I did it for a few days. And I was I was so bad at it is laughable. But there’s something between just keeping your hands busy, and it keeps your brain busy at the same time. More than I don’t know the science behind it. But it’s it works. And then
Bill Gasiamis 57:56
I would imagine, I would imagine that when you’re doing that you’re being mindful on the task at hand. You’re also creating something perhaps, if you’re doing crochet, or woodworking or whatever. So the whole thing is like a veal it’s a really visceral, and it’s an emotional and it’s a mental experience, because you’re focusing on something other than yourself. You know, you’re, you’re creating something, perhaps there’s a beginning and an end, you’re improving a skill, perhaps, you know, you started at the beginning and you were terrible at it, and then later on, you’re a little better at it. So you go through the whole process.
Bill Gasiamis 58:33
And it’s, I imagine very therapeutic.
Angie Read 58:37
Even if you’re not thinking about it, because my sister will pick up her crochet needle and yarn and just and she can have a conversation while she’s doing it’s just mindless, is that keeping your hands busy is really is really important. Yeah, and And so really, it’s there’s so much you can do to manage your own mental health and that you don’t have to go to a mental health hospital like I did twice. Those places have a place, but they’re really just meant to get you over the crisis.
Angie Read 59:09
So to keep you from, you know, taking your own life or to completely keep you from harming yourself or harming someone else. They are only meant to be like a temporary just help they and then they’re there when they really do they try to release you with a plan of action. So you’re going to go see a counselor, or you’re going to start you know, therapy can’t i Sorry, I’m losing my words. Yeah, but they’re very they’re just very, they
The importance of having a plan of attack
Bill Gasiamis 59:46
exist a crisis the like a crisis support system so that they basically can handle the acute phase of your episode and then from there once things settle down, then they is a plan of attack that you can take action, you can move right.
Angie Read 1:00:06
And you know, it’s hard to finding a spot in those places, it’s very hard. At least in the United States, I don’t know how it is worldwide. But finding a bed and one of those hospitals is, for one, you have to have insurance or you’re just never going to find something. But that’s not the message I want to leave people with.
Angie Read 1:00:26
I want to leave people with the message that it is in your own hands, there is so much you can do to establish a daily routine, start journaling, I didn’t want to don’t journal either I was I like to write but I don’t like to write about my feelings. And I just because I, I have the horrible habit, I self edit myself, I write and then across stuff out and it’s like, I’m trying to wordsmith and edit my own thoughts.
Angie Read 1:00:53
And it’s a horrible habit to have that as a writer, and somebody who has been a communicator her whole life, you know, that’s my career, it’s hard to, but I learned how to journal and just start writing out my feelings and not to judge my words. And I don’t even go back and read it. That’s not the point. The point is to get it out of your mind, get it down on paper. And then meditation, I do guided meditation, I like to use apps, or sometimes I just find some guided meditations on YouTube. That stuff’s free. Establishing a routine is is free.
Bill Gasiamis 1:01:26
The recovery podcast is free.
Angie Read 1:01:30
Yes, yeah. And, um, you know, eating right, that’s not free. And that takes some work, but it is so critical to your health, your mental health, your physical health, and sleeping, proper sleep. I mean, when I couldn’t sleep, because I was having horrible insomnia, which was a side effect of some of my medication. It was a, it’s that is a form of torture, not being able to sleep.
Angie Read 1:01:57
And there’s so many things that you can do to manage your own sleep. And just, you know, it’s those screens right before bed, there are just some different like little tips to help you get better sleep. And once you and I tell people, you don’t have to do all 10 of these mental health acts at the same time, try one, pick one that you think you can stick with for a few days, and then see how that’s going. And then maybe add one more and maybe add, you know, a handful, try them out and see how it goes.
Angie Read 1:02:28
Don’t judge yourself, I tell people to have grace give themselves grace, yes. And that there is always somebody willing to listen, there are crisis lines that you can call. But it is there are simple, just daily things that we can do to help ourselves.
Bill Gasiamis 1:02:46
And if you’re lazy, like me, you just put on a guided meditation just before you go to bed, so you don’t have to do any work towards it. And even if you fall asleep during that time, actually, the guided meditation is still supporting you in helping you come your state and then have a better night’s sleep. And for me, that was a, that was a game changer. So I and I would notice that my sleep would be far better if I put on a guided meditation. And my specific search was guided sleep meditation.
Bill Gasiamis 1:03:17
And then you would find titles like guided sleep meditation to improve sleep, etc. And then I would listen to him before I went to bed during the day to make sure that at the end of the meditation, it didn’t have some kind of a now wake up and come back into the room response where sometimes you do get that it was just stop talking, and then fade away. And then and then it stops. And I’d put it on with my phone on one of those, what we call them one of those little portable Bluetooth speakers.
Bill Gasiamis 1:03:52
So that it wasn’t right next to me, it was kind of down the other side of the bedroom. And then and then I had I had my phone set up so that it would snooze, it would go quiet after a certain amount of time. And it might be 30 minutes, and then the phone would automatically just snooze and go go silent so that I wouldn’t have to shift over and press the stop button and interrupt my zone if I was in a really good zone.
Bill Gasiamis 1:04:27
And if I was in if I was sleeping, so absolutely amazing tips, the things that you spoke about, which is what I love is that you came to very similar conclusions that I came to. And that’s the book that I’m writing is you comment almost on exactly the same things that I’ve come to the same chapters are going to be in there the same topics of conversation are gonna be in there.
Bill Gasiamis 1:04:51
The fundamentals are the things that you really need to take care of. And then it’s like Back to Basics. Okay, so what can I do to support What’s my healing? Okay, try and sleep better? Okay, am I doing something that’s interfering with my sleep at the moment? Possibly, what am I doing? I don’t know, when I go to bed, I watch stuff on my YouTube channel that are action, for example, action or drama or whatever and the blue light of the screen.
Bill Gasiamis 1:05:24
Plus, the thing that I’m watching is stimulating me instead of helping me calm, am I going out during the day so that the sun says, my face so that my circadian rhythm knows that I’m in daylight and nighttime is coming as a couple of little basic tweaks that you can do that really do support, sleep and make things differently. And one of the things that you shouldn’t do is you shouldn’t medicate, and try and support your sleep with alcohol or, or drugs, because it just doesn’t actually help it sedates you.
Bill Gasiamis 1:05:58
But it doesn’t allow you to go into the circadian cycle of sleep, and you never get to REM sleep when you’ve had alcohol as the device to get you to sleep, so to speak, if you miss out on the really restorative party of sleep, which is the REM stage, so and if you can, and if you have to use sleeping pills, just to get you through again, that acute phase of I haven’t slept for days or weeks, then that’s fine. But again, sleeping pills are not a long term solution. And you have to find out new, new sleeping habits.
Bill Gasiamis 1:06:39
And there’s an amazing book that I’ve read by Dr. Guy Meadows. And I forget the actual title of it now just search it while we’re chatting. And it’s probably one of the most shortest and succinct ways to describe how people can increase their quality of sleep. I’ll have the links to it in the show notes.
Angie Read 1:07:06
And that’s the thing when when we have brain injuries, we need a lot of sleep. And when we might I mean, I find myself six years later, I still need more sleep than I used to. Yeah. And so that to me says my brain is still healing. Yeah, you know, I still and I, I place a ton of value on sleep. I mean, when work gets stressful. I still like I’m like, Okay, I’m shutting it off. I go to bed at like, 830 I feel like an old lady now. But I and I will sleep for 10 hours. And I I mean, my brain needs it. Yeah. And thank god, I’m able to do that now.
Bill Gasiamis 1:07:46
Yeah, the book that I’m talking about is the slip book. Very simple side of the sleep book, by Guy Meadows. So I’ll have the links to that. Anyway, if anyone’s curious. Did you ever feel guilty about having extra naps or sleep or anything like that? Did you ever sort of feel like it’s unproductive?
Angie Read 1:08:09
Yeah, I mean, it’s hard when you’re kind of a perfectionist and always go go go person. But the funny thing is like, before my strokes I was always able to take naps on the weekends and I was a good Napper. My my best friend even got me a t shirt that said nap Queen because i i Could weekends, I would make time for my afternoon naps. The after my strokes, I was not able to nap.
Angie Read 1:08:41
And it drove me crazy. I would get these weird tingling sensations. And then I would start to almost like feel like I was going into a bad dream or something. And so naps, it took me a while to be able to nap again. I only feel guilty when I feel like there’s something else I have to accomplish. And that I’m maybe I’m napping just procrastinate
Bill Gasiamis 1:09:06
like something. Okay.
Angie Read 1:09:08
No, I don’t feel guilty about needing my sleep. I need my sleep. You know, I say hey, I’m getting older. I need my beauty sleep if nothing else.
You just need a little help with anxiety and depression after stroke
Bill Gasiamis 1:09:18
Okay, good. That’s great. I love it. Don’t feel guilty about I agree. So this book that you wrote invisible scars, I’m going to read a little bit about it just from the Amazon page. It says you survived the stroke. But now you’re dealing with the painful uncertainty, anxiety, and depression left in its wake. You’re ready to take control and take back your mental health. You just need a little help.
Bill Gasiamis 1:09:44
That’s that’s just the first paragraph of the about section of that book. And it’s such a beautiful way to describe what people need. They need a little help. And if you ask for help, I’m certain that most people do Who who can help, will help, they will definitely help. And if they can’t help them or be able to put you on to somebody who can help, that’s certainly the that’s the role that I play a lot of the times.
Bill Gasiamis 1:10:13
So we had a, I had a lady who, whose family contacted me that they’re in Canada, and she had an Australian ischemic stroke, but a brainstem stroke. And that meant that she’s locked in. And the family are trying to work out what to do to move the recovery forward. And they contacted me in case I was able to support or help in any way. And I really can’t in that space, I don’t know what to do.
Bill Gasiamis 1:10:41
But I was able to put the family on to Claudia Dunlop, who is a person who had on stroke, who I had on the podcast many years ago, who was also locked in for a period of time and then managed to many, many years later go back to work as a police officer in Ireland. And it’s so such a cool thing. All I did was reach out to call it up and close it. Yep, no worries, I’m happy to help if I can answer any questions or guide the discussion so that it can come from patient who’s been in that space, rather than people who haven’t been in that space and don’t know what it’s like.
Bill Gasiamis 1:11:18
And that’s the thing, if you just ask, you might not be able to get help from that specific person, but they might be able to give you an idea of the type of person that can help you. And that’s the same reason why the seven questions to ask your doctor after a stroke PDF download from my website exists so that people can take that to the doctor. And even if the questions seem basic or simple in their nature, they are enough to create a conversation. And it puts the stroke survivor in that position of leading the conversation rather than being passive in it.
Angie Read 1:12:01
Yeah, I love it. And I don’t know, it’s, I feel like talking about my recovery and being able to help other people by sharing my story in whatever they can take from it. I just it’s almost feels like it’s my new purpose. Honestly, like I can work in corporate America the rest of my life, maybe. But it doesn’t does it bring me fulfillment?
Angie Read 1:12:30
No. Writing books I have found it’s kind of my new passion. I just finished a book it’s not well, it’s not quite done. And it’s kind of a follow up to an invisible scars. It’s called Identity crisis, you are not your career. Because when you have a stroke, or another huge, you know, medical problem or anything that takes you out of your career, or completely puts a stop, stop to the life that you’re used to living. And then if you don’t know who you are anymore, it’s so jarring when I thought I couldn’t work again, in communications.
Angie Read 1:13:08
I really I had no idea who I was, I was lost. And I thought that fed into my depression and anxiety. And I just was like, I need a purpose. I couldn’t people told me I should start to volunteer and do stuff like that. And I did. And nothing just felt like it was giving me a purpose. But writing my story, sharing it and having people respond positively that the way they have saying this is I’ve had some reviews on the book saying how much it’s helped people. And I love that. And I’m like, if that’s why I had a stroke, maybe you know, I don’t know, maybe some good can come out of it.
Bill Gasiamis 1:13:49
I love it. Because I think I’ve discovered my purpose. And this is you imagine this is what my purpose is now, right? So I can go back to work. I can do all the things I did before but it’s just not the same. When I when I sit down to do a podcast interview, I get really excited, you know, to learn to delve deeper to get questions answered, so that people listening, who are going through what you and I went through.
Bill Gasiamis 1:14:18
And they’re early on in their recovery can feel a little better about that. And their loved ones can also feel a little bit better about it. The thing that you said about identity of course in my book is gonna there’s a part in identity. Of course, in my book, there’s a part about purpose. So these are universal truths that appear. And the thing about purpose is you can’t I feel like I never would have found my purpose if I went for, for purpose.
Bill Gasiamis 1:14:44
Like I’m going to go to find my purpose. It’s not going to happen. It came from helping other people. It came from shedding light in situations where there was no light shed before where there was only darkness. I didn’t know that it was going to find my purpose. It took about two or three Three years that led to me being able to say that stroke was one of the best things that ever happened to me, not the physical stroke, not what it’s left me with. But the ability to grow, and to feel fulfillment, and the ability to turn it into something positive.
Bill Gasiamis 1:15:18
That is, that never would have happened if it wasn’t for three brain hemorrhages and brain injury and brain surgery. So it’s like, it’s like, what an encouraging story to hear it from you to, to, you know, what it does is it validates me as well. And hopefully what that does is creates encouragement for people who have been thinking about putting pen to paper or sharing their story in a different way or supporting other stroke survivors.
Bill Gasiamis 1:15:53
Without us, we can’t heal as well, without the community that we’re creating, we can’t heal as well. And you’ve been very prolific, you know, I’m envious, if I’m honest, of your ability to get three books out in nearly in less than six years. I mean, it’s fabulous.
Angie Read 1:16:15
Thanks. It’s something locked inside me, it’s like, oh, I have a lot to say. There’s a lot I want to say. And it feels so good to help people. It just, it’s funny, because I’ve always been very buttoned up. And honestly, like very corporate minded. And growing up, I think I’ve always been kind of selfish. And it’s always been about me, me, me and getting more doing more being more.
Angie Read 1:16:44
And I think, the stroke, if anything, and it has taken the full six years since since having the stroke for me to realize it’s not about me, it isn’t about me, it’s about everyone else. And, you know, using my story, using whatever I have to help other people. I can lose myself in it as when I’m writing and I know I’m writing something that’s going to help someone I lose hours. I forget why I am and and that’s when you know, you’re you haven’t hit your purpose is when you’re not thinking about the time is taking when you’re not thinking about the money, or anything else.
Angie Read 1:17:28
It’s just, you know, putting good out into the world. And I think that’s probably the been the best thing about me having a stroke is I am so much more in tune with myself. I know it’s not about me anymore. I’m much less selfish. And that’s a such a good thing. And my even my parents, my mom and my stepmom, my dad passed away a few years ago, but they’re kind of like, wow, you’re just and my sisters too. It’s like, You’ve changed a lot for the better in the euro. Like, this has made me a better person. And I’m grateful for that.
Hardest thing about the stroke

Bill Gasiamis 1:18:14
As we wrap up, what was the hardest thing about the stroke? Yeah,
Angie Read 1:18:24
that’s a tough question. So good question. I think for me, it was it was definitely the mental health crisis after the stroke. I was not prepared for it. I didn’t know what to do. I I wasn’t invincible. It was trying to come back from that. I mean, I can’t believe that I sat in my bathroom one night and consider taking my life. I mean, it’s just, it’s unfathomable to me. I can’t say that word. I should’ve used a smaller word.
Bill Gasiamis 1:19:05
We finally found the chink in your armor, unfathomable.
Angie Read 1:19:12
But, you know, that was the hardest part. And to think that I came that close after surviving a very, very serious stroke. And, you know, being so lucky to have that. I think how dark and scary it got was just that was the hardest part for me. And coming back from it was not, it didn’t happen overnight. And it wasn’t a quick fix. It wasn’t a pill I took from my psychiatrist. It wasn’t it wasn’t any one thing. It was the combination of things and it was me not giving up on myself. And trust me, I wanted to.
Bill Gasiamis 1:19:53
What a stroke taught you.
Angie Read 1:19:59
You know probably just that life is precious. And just to give myself grace, nobody’s perfect. Nobody has to be perfect. I think it’s also taught me that being a perfectionist has not served me well in life. It, you know, it played into everything that went wrong. And it’s just you have to step back and just appreciate the little things. And they always say, you know, appreciate the small things and be grateful.
Angie Read 1:20:31
I do keep a gratitude journal, I do 10 gratitudes a day. Sometimes I repeat the same things over and over again, because in my heart, those are the things I’m grateful for. And I think it’s just brought me it’s just made me a better person. And just Yeah, I think that’s, that’s what it’s done. For me.
Bill Gasiamis 1:20:53
That’s cool. What would you like to tell others who are listening, who might be early on in their in their journey and are freaking out, or they’re anxious about the future.
Angie Read 1:21:03
Don’t rush it, you know, strokes, strokes have a mind of their own. And the timeline is not something you can control. But it is something that you can help by doing your going to rehabilitation and doing the exercises that your doctors are giving you participating and being an active participant in your own recovery. But give yourself grace, you can’t, you can’t put a timeline on it. And you also don’t worry about how long it is taking you. Everyone recovers in their own on their own timeline, and you will recover just have faith. Give yourself grace and don’t give up hope.
Bill Gasiamis 1:21:44
Yeah, fabulous. Invisible Scars is available for free in which format?
Angie Read 1:21:54
It’s not available for free on Amazon, but for stroke recovery. So like for your listeners, if it works on your your site, I can give you a link. So they can download a free copy of just the PDF. But on Amazon, it’s I think right now it’s like 99 cents or something like that if you just want the ebook. But you can also get into paperback or hardcover.
Angie Read 1:22:21
And then Identity Crisis will be out. I’m just waiting on some advanced readers to get back to me, I just want to make sure it hits home with not just stroke survivors or people that have had medical crisis. But and ironically enough, I work for a company right now that is in the middle of a big corporate layoff. And they told us that it’s going to be until the end of September. And so I may not have a job again at the end of this month. But you know what, I am not freaking out. It makes me nervous.
Angie Read 1:22:55
But I also know I have the tools to get over it. And my career is not my identity. I enjoy my career, but it is not my identity. And so I’m better equipped. If it happens to me, I’ll be like, gosh, so ironic that I’m writing this book and putting it out right at the time that I might lose my own career. But I won’t lose my identity, because I know what my identity is now. And it’s not my career.
Bill Gasiamis 1:23:19
That’s beautiful. Angie, thank you so much. On that note, I really appreciate you reaching out. Thank you for sharing your story and making that link available to the listeners, I’m sure that there’ll be a number of them that will absolutely download that PDF.
Bill Gasiamis 1:23:36
I’m going to have all the links to your socials and to your book on the show notes. So for everybody who’s listening, go to recoveryafterstroke.com/episodes Click on Agnie’s podcast episode, and then check out the links in the show notes. It’s absolutely been a pleasure. Thank you so much.
Angie Read 1:23:58
It’s been a pleasure for me to thank you. I appreciate it.
Bill Gasiamis 1:24:02
Well, thanks again for joining us on today’s episode. As always 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 thank you to all those people who have already left a review. It means the world to me and you are helping others in need to find this type of content easier and that is making their stroke recovery just that little bit better.
Bill Gasiamis 1:24:34
If you haven’t left a review yet, and you would like to the best way to do it is to go to iTunes and Spotify and leave a five star review there as well as a few words about what the show means to you. Thanks again for being here and listening. As always, I do deeply appreciate you. See you on the next episode.
Intro 1:24:53
Importantly, we present many podcast designed to give you an insight and understanding into the experiences of others. individuals opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill gassy armas.
Intro 1:25:23
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:25:48
Never delay seeking advice or disregard the advice of a medical professional your doctor or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:26:15
While we aim to provide current quality information in our content. We did not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide however third-party links from our website are followed at your own risk and we are not responsible for any information you find there.
The post Anxiety and Depression Amidst Stroke – A Comeback Story | Angie Read appeared first on Recovery After Stroke.
1 hr 27 min
September 04, 2023 Survival Chances After Stroke with Patrik Hutzel
Patrik Hutzel from the intensive care hotline interviews Bill Gasiamis about the survival chances after a stroke.
Previous Interview with Patrik Hutzel on Episode 32
Intensive care at home
Twitter
Intensive care hotline
Highlights:
02:26 Introduction
08:40 Bill’s stroke recovery story
13:31 What’s the next step?
16:46 Knowing when to push back
22:13 The importance of nutrition in stroke recovery
26:26 Age discrimination in stroke treatment
35:46 The seven questions to ask your doctor
41:32 The difference between a stroke victim from a stroke survivor
44:32 Why the stroke is the best thing that ever happened
54:44 You’re not alone
Transcript:
Patrik Hutzel 0:00
I’ll read out the comment from Laurie here who says, I’m four years post hemorrhagic stroke and never recovered. Also, I consider myself a stroke victim, not a survivor.
Bill Gasiamis 0:11
That’s a really important distinction to make. So, if you’re a stroke victim, you’re in a situation where you’re allowing what happened to you, to impact you in a negative way and only in a negative way. If you’re a stroke survivor, you’ve already overcome one thing, you didn’t die from the stroke and as a survivor, you are then guided to help you look for solutions to problems because that’s what we generally need to be.
Bill Gasiamis 0:42
Stroke creates many, many, many problems. If you always focus on problems, you will get more problems. If you focus on solutions to problems, you will get more solutions. As a survivor, a survivor needs to focus on solutions. Victim will not be able to change their mindset to focus on solutions, they will focus on all the reasons why this happened to them. What did I do wrong in a past life? Why has God punished me? None of that is useful for improving your outcomes for a good recovery.
Intro 1:23
This is the Recovery after Stroke podcast. With Bill Gasiamis, it is helping you navigate recovery after a stroke.
Bill 1:37
Hello, and welcome to the Recovery after Stroke podcast. If you are a stroke survivor with a story to share about your stroke experience, now’s the perfect time to join me on the show. The interviews are not scripted, you do not have to plan for them.
Bill 1:49
All you need to do to qualify is be a stroke survivor who wants to share your story in the hope that it will help somebody else who is going through something similar. Also, by sharing your story you feel better about your situation, you get something off your chest, and it does help to improve your case and your recovery.
Bill 2:09
If you are a researcher who wants to share the findings of a recent study, or you are looking to recruit people into studies, you may also wish to reach out and be a guest on my show. If you have a commercial product that you would like to promote, there is a path for you to join me on a sponsored episode of the show.
Introduction – Patrik Hutzel

Bill 2:26
Just go to recoveryafterstroke.com/contact, fill out the contact form and briefly explain which category you belong to. And I will respond with more details about how we can connect via Zoom. Now today’s episode is a little different.
Bill 2:42
Instead of me being the interviewer I am being interviewed by my friend and ICU nurse Patrik Hutzel. Patrik operates the advocacy service for people who have loved ones in the ICU called the intensive care hotline. He supports people from all over the world who need to have difficult conversations with medical professionals when a loved one ends up in the ICU.
Patrik Hutzel 3:08
G’day Bill, thank you so much for coming on to this call. It’s it’s a great honor to have you on. Let me quickly introduce you, Bill, to anyone on this call. And thanks to anyone who’s watching this on replay who can’t join us live. Today’s topic is survival chances after a stroke.
Patrik Hutzel 3:30
And that’s why I brought on Bill today. Bill is a three-time stroke survivor and is an inspiration for many stroke survivors all around the world. And I’m not exaggerating here because I know Bill you’ve got your podcast you have interviewed hundreds.
Bill Gasiamis 3:49
265 people on the Recovery After Stroke Podcast.
Patrik Hutzel 3:55
And you would have interviewed I know I was a guest on your podcast. So thank you very much. But you would have interviewed other stroke survivors, you would have interviewed doctors, nurses, I don’t know. Can you talk a little bit more about your podcast as well?
Bill Gasiamis 4:09
Yeah, so the people interviewed were mainly stroke survivors. So they share the story of the time that they experienced a stroke. They then share their story of how they’re going after the stroke. And sometimes, if they’re long enough, out of stroke, you hear about the story 5, 6, 7, 8 years post stroke.
Bill Gasiamis 4:28
So what we try and do is capture the whole timeline, so that we can tell people that if you’re feeling unwell at the moment it starts to improve and then things get better and then a lot of people most people get back to some kind of a regular life routine and start going back to work or becoming involved in their community again.
Bill Gasiamis 4:49
And then we interviewed doctors who came on and shared some of their wisdom about what people can do to support stroke recovery and what’s some of the available medical options. We also interviewed past physical therapists, I think I’ve interviewed chiropractors, I think I’ve interviewed speech therapists, and caregivers.
Bill Gasiamis 5:10
So some of the caregivers who are caring for somebody that’s had a stroke, we’ve had people that have had a stroke, in utero. So before they were born, we’ve had people that have had a stroke in their teens in their 20s 30s 40s 50s 60s. I mean, it’s just every type of person you can imagine.
Bill Gasiamis 5:32
We’ve interviewed people who have had ischemic strokes, hemorrhagic strokes, strokes caused by atrial fibrillation, strokes, caused by a hole in the heart, strokes caused by sneezing, believe it or not, strokes caused by carotid artery dissections or dissections of other blood vessels. So we’ve had people that have had strokes as a result of car collisions. Every type of person you can imagine, there is a story on there that somebody listening here today will relate to.
Patrik Hutzel 6:06
Yep, that’s fantastic Bill. The reason I labeled today’s episode, is what are survival chances after a stroke. This is a question Bill that we’re getting weekly at intensivecarehotline.com. You know, this is, in one form or another? Maybe not always, in those words, but pretty close to those words, what are survivor chances after a stroke?
Patrik Hutzel 6:28
I mean, you’re well aware that we are serving families in intensive care, you know, we have so many families contacting us, hey, my mom, my dad, my spouse, my child is in ICU after a stroke, what are the odds of survival?
Patrik Hutzel 6:44
My response to that is always, well, the odds of survival are pretty good because 90% of intensive care patients approximately survive. But it is so much better to have a stroke survivor here. And, you know, hear it from you directly. What are the odds? You know, or what are the chances of stroke survival? And if you can share more about your own story?
Patrik Hutzel 7:10
You know, I’ve been very impressed by your answer. I mean, we’ve known each other for years, through various entrepreneur groups. You know, I’ve been very impressed and very encouraged by your story. Can you share more about what you know, about survivor chances after a stroke? And then we also want to talk down the line about your upcoming new book that you’ve just written. What’s the title of your book, again, Bill?
Bill Gasiamis 7:37
Stroke, The Best Thing That Happened.
Patrik Hutzel 7:40
Yeah, yeah, that’s an amazing title.
Bill Gasiamis 7:43
Bit of a weird title. People don’t relate to it immediately. Because it’s not the best thing that happens to you. It wasn’t the best thing that happened to me at the beginning. And the book is about post-traumatic growth. And that’s really what the podcast tries to demonstrate.
Bill Gasiamis 8:00
So every person that is associated with my podcast is either a stroke survivor or deals with shock survivors and supports stroke survivors and gets great results with stroke survivors. So the statistics about stroke say that one in four people will have a stroke in their lifetime.
Bill Gasiamis 8:20
And 20% of those people won’t survive after the first stroke. But most of those people will survive now about 60% Get back to work. And then there’s a large percentage of people that don’t get back to work. But I’m not sure how far out those statistics go.
Bill’s stroke recovery story
Bill Gasiamis 8:40
Whether they track people 4, 5, 6, or 10 years, post-stroke, I know that a lot of people, at least 60% Get back to work after their first stroke. And then a lot of people do get back to work after very many years. I had a hemorrhagic stroke in 2012, the first time that my stroke occurred was because of a bleed that occurred in a blood vessel called an arteriovenous malformation.
Bill Gasiamis 9:10
And that blood vessel burst and it bled. And as a result of that it first bleed. Then I had a second blade on in the same blood vessel, but six weeks later, and then, approximately two and a half years after the first incident, I had a third bleed.
Bill Gasiamis 9:29
That third bleed resulted in brain surgery to remove the faulty blood vessels. So they opened my head on the right side, they went in, they removed the faulty blood vessel and then I had to go through rehabilitation because I had to learn how to walk again and use the left side of my body again.
Bill Gasiamis 9:47
And it was a pretty intense three or so years because at that time, each time I had a blade I noticed different symptoms. They were physical symptoms they were cognitive issues, I had problems with fatigue, I had problems with understanding what people were saying and what I was trying to say to them, and I couldn’t finish and start sentences.
Bill Gasiamis 10:11
At one point, I couldn’t recognize my wife. I had difficulty going to work, I couldn’t work for the majority of three years. I wasn’t allowed to drive. I had a passive life for three years trying to get healthy and heal, and, and recover.
Bill Gasiamis 10:32
And in that time, In February 2012, there weren’t a lot of services available for me to understand what my stroke recovery might be, like, what I could achieve, and what some of the obstacles that are could overcome. So I set out to find other people who were like me, that’s how the podcast came to be.
Bill Gasiamis 10:53
And I discovered that every single person on my podcast is a stroke survivor. And some of them have been locked-in and have experienced locked-in syndrome as a result of a brainstem stroke. And those people were, I would say, in a worse state than any of the other people that I’ve met, because when you experience brainstem stroke, it affects your entire body, not just one side, either the left or right side, like me.
Bill Gasiamis 11:22
And as a result of that, those people tend to wake up after the stroke, not being able to move their entire body. So they’ll be in ICU, and they’ll only be able to blink, to respond to people chatting and speaking to them, their recovery seems to be the longest and the most arduous.
Bill Gasiamis 11:41
But it is the most unbelievable as well because they go from not being able to move anything other than their eyes that go to very, very often and most times becoming rehabilitated and active members of their community. Many of those people go back to work.
Bill Gasiamis 11:59
Many of those people achieve amazing things in their lives. So my journey, when it started, was unexpected. I was 40. I was 37 years old, I was a father of two, and I was married, and I had a business that I ran in Australia. So I was overworked or stressed I was doing all those things.
Bill Gasiamis 12:24
What the stroke led me to achieve was a lifestyle change led me to achieve a different way of going about things asking for help and re-educating myself on what was required for me to move forward, after the stroke, how to outsource all the tasks that I needed to outsource for my business and how to keep it going even though I was quite unwell.
Bill Gasiamis 12:49
At that time, when the podcast started to become popular, people started reaching out for coaching. As a result of that, I still have the property maintenance business, which I started many years ago, that was the way that I made a living.
Bill Gasiamis 13:06
Now I offer coaching counseling and support services, not counseling in a formal situation. I’m not a qualified counselor or anything like that. But just acute counseling for people who want to know what to do next in their stroke recovery path. And often that is with the caregivers, mothers, fathers, brothers, and sisters, of people who have had a stroke.
What’s the next step? – Patrik Hutzel
Patrik Hutzel 13:31
I would be very curious to find out Bill what can they do next because I know that is of high interest to our audience here. After all, we can teach them what to expect in the ICU. But where my area of expertise stops is outside of the ICU, especially for stroke survivors. So can you share more about what people can do after they leave the hospital or after they leave the ICU I think that’s the journey that you’ve been through.
Bill Gasiamis 14:00
It depends on the country that they’re in. But if they have insurance and insurance is covering them for a duration, then I would go after whatever can be offered by the insurance providers and do every single possible thing that they offer.
Bill Gasiamis 14:18
One of the things that I hear often is when the provider or the caregivers or the rehabilitation providers say that the patient has experienced a plateau and as a result of the plateau, that they are going to cut services or they’re going to no longer fund certain services. If it’s possible, I would go out of my way to not accept their diagnosis that the person has hit a plateau and as a result, funding is stopped. Now I’m not exactly sure how you do that.
Bill Gasiamis 14:57
But to not accept that response and that diagnosis, and to push back on the supposedly plateau is a really big thing. Because if you can extend the amount of rehabilitation time that a person has the better results they will get, even though they have reached the supposed rehabilitation plateau.
Bill Gasiamis 15:20
Now it’s just a technique, I believe it’s just a technique for insurance providers to get out of supporting somebody for a longer amount of time. Now, you have to be your advocate. So all you have to be the advocate for the person who can’t be their advocate if you’re a caregiver.
Bill Gasiamis 15:40
So in that case, what I would say is reach out to your local community and see if they are, if there are support services, you can just do a Google search online, stroke support services, in your guide you through the local process, what has to happen locally. So I know it’s different in Australia, I know it’s different in the UK, and in the United States.
Bill Gasiamis 16:01
But some organizations stroke foundations in all those countries, where you can reach out to and get some guidance as to where to, as to how to proceed from a certain spot in the recovery, which perhaps is the plateau spot where people tell you there’s a plateau.
Patrik Hutzel 16:24
Bill thank you for that. And I just want to reiterate what you’ve just said there, because I’m a big believer, and this is what we advise our clients, everything in life is negotiable. It doesn’t matter what your insurance says, or, you know what you’ve said, renegotiate the diagnosis, I could not agree more with you.
Knowing when to push back
Patrik Hutzel 16:46
There’s a lot of that work that we do with a similar mindset saying, well, you can’t just accept what they’re telling you, here are potentially other options. And once we all know, I mean, we both speak to people around the globe, really, in our work, you know, you talk to people in the US, I talk to people in the US.
Patrik Hutzel 17:06
You know, with enough clinical insight, you can always go back to doctors, nurses, even hospital executives, and you can say hang on a second, discharging my mom, my dad, or whatever it is to this facility is premature. We need to continue treatment here. And here’s the reasons why. You will also often find that if you challenge that with health insurance, there is often an appeals process.
Patrik Hutzel 17:34
And if you have, you know, whether it’s you as an advocate, or if you get a clinician in like myself, you know, we have often turned those situations around simply by looking at the clinical diagnosis and saying, hang on a second, this is purely driven by money, it’s not driven on clinical need. Let’s look at the clinical need.
Patrik Hutzel 17:55
And let’s advocate on the clinical need, or sometimes what we see in the US in particular, that trying to send people to other states for rehabilitation, two hours, three hours away from their hometown, and you go like, This is madness. I don’t know, I mean, you and I have spoken offline, I believe you’ve recovered with your family being around. And that was probably also critical to your recovery, I would imagine.
Bill Gasiamis 18:29
Absolutely. And I didn’t have to because I live in a major metropolitan city I didn’t have to travel to and three hours to my appointments, that would have made it difficult. And I had a lot of appointments during the week for rehab, especially after I was released from hospital rehabilitation where I was for a month in outpatient rehab, I had three appointments a week. Now, if I had to travel three hours back and three hours from each one of those appointments, that’s not doable.
Bill Gasiamis 19:02
I mean, it’s not doable for most people, let alone somebody who’s got more resources than, say, most stroke survivors. So my idea about pushing back on the suppose that plateau, and having them try to relocate you to make it harder for you is to ask for proof that the person has reached a plateau.
Bill Gasiamis 19:27
Data, you’ve made a decision you’re telling me about it. But what’s that based on? Show me the data, give me the information that you used to conclude that that person has hit a plateau. Now, when somebody hits a plateau, so to speak that’s the time when therapy needs to be upgraded when therapy needs to be taken to the next level. Not a time for therapy to stop because I have met many stroke survivors who tell me that their recovery they are improving years after the stroke. So there is no time to remove services just because somebody made a decision that you need to be cut off.
Patrik Hutzel 20:12
Bill, obviously you’ve had a hemorrhagic stroke, you know, we have any inquiries all the time, hemorrhagic stroke, ischemic stroke, you know, I mean, I know the difference, and most people that come to us by then know the difference as well, do you think there’s a difference in sort of speed of recovery or options for recovery, whether there’s either an ischemic or hemorrhagic stroke?
Bill Gasiamis 20:39
So this is very interesting because what seems to me is that when I had a stroke, in 2012, it wasn’t referred to as a stroke by the medical profession, it was referred to as a brain hemorrhage. And I didn’t understand what that meant, and why was different from a stroke, I had the same neurological problems that an ischemic stroke survivor had.
Bill Gasiamis 21:01
I also had the same neurological problems that a traumatic brain injury survivor had somebody, for example, has had a massive concussion, we all experienced the same physical, and neurological symptoms, and we all had the same type of impact on our daily lives. And we needed to find a way to move forward. And that was the real issue, we didn’t know how to move forward.
Bill Gasiamis 21:27
So, unfortunately, with stroke, every stroke is different. It happens to every individual differently, it happens in a different part of the brain, and it affects a different part of their function. And as a result of that, you can’t compare my stroke to the other person who had a hemorrhagic stroke in the same spot or place, because their brain is wired differently.
Bill Gasiamis 21:51
They have different ages, they have different comorbidities, and they have all these different things. So all strokes are different. However, just because the strokes are different, doesn’t mean the approach needs to be different, the approach needs to be the same, you need to attend to certain things to make sure that you’re giving the best opportunity for the brain to heal.
The importance of nutrition in stroke recovery
Bill Gasiamis 22:13
My understanding and the way that I went about my stroke is that I attended to certain things that I hadn’t attended to before, but some of them are obvious, right? One of the things I attended to was food, on the nutrition side, once people are released from the acute phase of recovery from hospitals from ICUs, they need to take care of their nutrition.
Bill Gasiamis 22:36
They need to make sure that they’re not eating foods that are inflammatory and going to cause more inflammation in the brain and therefore increase fatigue levels and increase the time that it takes for people to recover from the brain injury. Some of those foods are very basic. I’m not a nutritionist, so don’t take nutritional advice from me.
Bill Gasiamis 22:59
But these are really simple things. Caffeine can cause irritation, and make fatigue worse, sugar can do that. Smoking can do that. Drinking alcohol can do that. So alcohol 100% needs to be avoided same with sugar.
Bill Gasiamis 23:17
And caffeine needs to be limited. But if people are going through stroke recovery, and they are still drinking alcohol, and they are still smoking, and they are still consuming high amounts of sugar, they’re going to decrease their brain’s capacity to recover. So I was trying to make the right environment to help my brain in its recovery. I didn’t want to make that worse.
Patrik Hutzel 23:43
Bill, you mentioned age in particular. And you mentioned at the time of your first drug, you were 37 years of age, which I consider to be very young. How do you think age has an impact? We have many families coming to us and saying Hey, my 77-year-old mom and my 77-year-old dad had a stroke.
Patrik Hutzel 24:05
They’ve been previously fit and healthy. And now this happens. They’re unresponsive. They’ve been in ICU for two weeks, they’re out of an induced coma and they’re still not responding. How do you consider what’s your take on the age? When does the stroke happen? What’s your take on that? How does it impact the chances of survival and recovery?
Bill Gasiamis 24:28
I think age is important. comorbidities are important the older we get the more risk factors work against us. So that is a very standard logical thing to take into consideration. However, there is a bit of an ageism thing occurring where the medical community will consider somebody of an older age. less necessary to rehabilitate though won’t put the resources into Somebody older.
Bill Gasiamis 25:02
And I’m not sure, specifically why they’re ageist, because we all know, we all going to be older, we’re all going to be in the same situation at some stage, and discriminating against older people, just because supposedly they have less possibility of recovery. Or supposedly they have lists of years ahead of them or something along those lines, is something that you need to be aware of.
Bill Gasiamis 25:25
And I think you need to push back on the possibility that if you’re over the age of 60, or 65, and you feel like they are fast-tracking, you’re out of the hospital or fast-tracking you back to home. And the family is not comfortable with that. And you’re not comfortable with that.
Bill Gasiamis 25:42
Pushback, because I’ve seen it where several people who I’m coaching are above the age of 60, and 65. And they are coming to me saying that I wasn’t offered particular services, because they didn’t see that I could have a full recovery, or recover well enough to justify the costs of rehabilitating me.
Patrik Hutzel 26:06
Well, I can give a very real example, I had an inquiry from a client here in Melbourne, maybe three months now would have been around March this year, who had an 80 or 82-year-old mom go into a hospital into a well-known Hospital in Melbourne, with a stroke with an acute stroke.
Patrik Hutzel on age discrimination in stroke treatment

Patrik Hutzel 26:26
And the hospital there was telling the family from day one, we’re not going to treat the stroke, the only thing we can offer is palliative care. Unfortunately, the lady passed away within a few days after the diagnosis without having ever been offered proper first-line treatment for the stroke with an ischemic stroke, for example.
Patrik Hutzel 26:50
And this was an ischemic stroke, could include thrombolysis, you know, I’m sure you would be familiar with that, you know, has been refused right? Now, they only found out about our service when it was too late. So we didn’t even have the chance to advocate for her because her thrombolysis needs to be done within a few hours.
Patrik Hutzel 27:13
So it’s certainly something that we are seeing across the board. And the older someone is when they have a stroke, the less likely it is that hospitals will push towards end-of-life care palliative care, or just symptom management, rather than looking for a cure.
Patrik Hutzel 27:32
And in my mind, that is discrimination. Because you know, with your story, yes, you have a higher chance to recover when you’re younger. But that doesn’t mean you don’t have a chance to recover when you’re 77, or even 87, you haven’t even tried.
Bill Gasiamis 27:47
Exactly right. And the thing about it is nobody can predict the future. Not even doctors might have statistics that suggest certain things, they might use a bell curve, and most people might fall in that part of the statistical data. And then there’ll be some outliers. And that’s okay, but they don’t know who you are yet. They don’t know which part of the data you will stick to and fall into.
Bill Gasiamis 28:10
And that’s the part that frustrates me is that they make decisions on people but they don’t know, the person that they’re dealing with, as you know, how their future may unfold. Especially if well, they could probably predict how the future will unfold. If they refuse to support that person, if they refuse to provide medical care, that will predict the way that person’s future will unfold.
Bill Gasiamis 28:35
But if you do provide the medical care, there’s a good chance that you’ll improve the person’s outcomes, you’ll get them a result, and they will be able to rehabilitate themselves to a certain point. And yes, in some cases, if the damage is too large, and the person is in their 70s, or the 80s, yes, they may not have enough time ahead of them to achieve the type of recovery that you would like.
Bill Gasiamis 29:02
But that’s a different situation, that’s a situation where perhaps scans, etc., do show certain levels of impairment that you don’t have enough time in front of you to rehabilitate. Now, even then, it doesn’t mean that services should be discontinued because every person is a loved one. Every person is cared for every person is required and necessary to be around. And I don’t believe that we should just take the word of doctors for the gospel and not question it.
Patrik Hutzel 29:44
I could not agree more with you Bill because every life is worth living and with the work that we are doing one thing that we are hearing all the time and I’m sure that our viewers and listeners will concur with that. The doctors always say well, even if your mum or dad or whoever it is will survive, they won’t have any quality of life.
Patrik Hutzel 30:05
Well, what is the quality of life? That’s a perception. It’s not more than that, you know, what is acceptable for you is quality of life may not be acceptable for me as quality of life and vice versa. So it’s a very subjective measure. It’s not an objective measure, it can’t be measured objectively.
Patrik Hutzel 30:24
The other thing that I think is important to mention here, you know, the medical community looks at that, quote, unquote, stroke. Whereas the family looks at it, well, this is my mum, this is my dad, they lived a full life until now, and they’ve overcome challenges before, I will not have that stroke, stop my mum or my dad from overcoming another challenge.
Patrik Hutzel 30:48
But it’s a very, very isolated view that often hospitals and the medical community take looking at a diagnosis without looking at the whole person at the whole family. You know, what have those people overcome in the past, and so forth? What’s your take on that Bill?
Bill Gasiamis 31:09
My take is, you know, your family member better than anybody. And, the doctors are there to care, they are there to provide support and services, etc. But they are limited to what they can do by governments, by funding by budgets, etc. And they’re just trying to meet all the criteria. And then they’re trying to also meet the regulations and the bureaucratic criteria that they need to meet.
Bill Gasiamis 31:41
So they are kind of stuck in the middle. And most doctors, when you push back, do kind of what I’m not sure if the word is like, accept you’re pushing back, but they do. Well, they will reconsider, they will negotiate, and there will be a path forward for the person who pushes back on a doctor’s suggestion or decision.
Bill Gasiamis 32:04
The result is that most medical facilities cannot decide on the path forward of a person without the family members or the people who are advocating for that person who’s in the hospital without their consent.
Bill Gasiamis 32:21
So it’s really important that, if you can’t have the conversations yourself you do call somebody else into the conversation on your behalf. Because it’s an emotional time, you’re less likely to make the right decisions, perhaps you won’t make rational decisions.
Bill Gasiamis 32:42
And when you’re confronted with a supposed medical expert like a doctor, it is common for us to take their word for the gospel because we elevate them to positions of power and authority. After all, they deserve it to an extent.
Bill Gasiamis 33:00
But because of that, we feel sometimes that we can’t question their authority. And I believe that you must question their authority in my case. And if we can do it in a way that’s nice and gentle and compassionate for them because they are probably stuck between a rock and a hard place. In my case, I sacked my team of doctors, after my first stroke.
Bill Gasiamis 33:26
And I left the hospital that I was at, and went to another hospital because I did not feel that they had my best interests at heart. And I went and got a second opinion. When I got a second opinion, I felt that the people I was communicating with about my condition did have my best interests at heart, and I was going to receive a better level of care. So that’s exactly what I did. And I think that is something that caregivers and loved ones of stroke survivors can do to get a second opinion.
Patrik Hutzel 34:00
It’s such a critical point, Bill because that’s what we are doing all the time here. You know, we have families coming to us whether it’s, you know, after a stroke or any other condition, they say, well, the hospital is telling us tomorrow, they’re going to stop treatment.
Patrik Hutzel 34:18
And I say to them, okay, so will you just take this for the gospel, Oh but that’s what they said. And I said, Well, if they asked you to jump off a bridge tomorrow, would you jump off a bridge? Oh, no, we wouldn’t do that. So why would you? Why would you just go along to get along? You know, this is a once in a lifetime. situation. You can’t get it wrong.
Patrik Hutzel 34:22
You know, hospitals and doctors are extremely good at pretending they’re operating in a vacuum. Well, end-of-life and discharges to other hospitals and whatnot. It does not happen in a vacuum happens in a framework Right? But like you said, families or patients, put doctors and nurses onto a pedestal, you know what I refer to as perceived authority.
Patrik Hutzel 35:11
And of course, there is a level of authority. Of course, there is. But that authority needs to be used to the benefit of a patient and the family doesn’t need to be used to the benefit of the system. That’s my take. And we wouldn’t be in business with an intensive care hotline if there wasn’t a need for consulting and advocacy for people in need. You know, the minute our families bring an expert in, that can help advocate for them, the dynamics change and change in one phone call.
The seven questions to ask your doctor
Bill Gasiamis 35:46
They immediately change. Yeah, I found the same thing, I found that simply, for somebody to go to my website and download seven questions to ask your doctor after a stroke, it’s a free PDF that they can get from my website at recoveryafterstroke.com.
Bill Gasiamis 36:05
That is enough to begin a conversation with a medical professional that makes the playing field a little more even. It makes the medical professional engage in the conversation, rather than just give information about this is what’s going to happen, It makes them respond to the desires, the needs, the lack of clarity, lack of understanding that the caregivers or the stroke patient has.
Bill Gasiamis 36:05
Now when somebody is a stroke patient, I don’t have the cognitive ability to make medical decisions. Because I’ve had a stroke, my brain is injured. My wife had never dealt with anyone who had had a stroke before she’d never met anyone seen anyone. So she was and she’s not a medical person. So she was navigating this blind.
Bill Gasiamis 36:05
Now, if we had a tool that I could take to a meeting with my doctor, that would have made her life a lot easier. So that’s what that tool is, it’s a tool to start a conversation in a way that perhaps a nonmedical person like me, wouldn’t have been able to previously ask to start a conversation with a medical person about, I don’t have the words, I don’t know the language.
Bill Gasiamis 36:05
I don’t know the abbreviations. I don’t know any of that stuff. It’s overwhelming. So if you can just find a way to generate a normal conversation and share your needs and your requirements for your loved ones’ care, then that conversation takes a completely different path than it being one wire coming from the medical professional, and you’re just passively listening to it.
Intro 37:47
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. 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, you probably don’t know what questions to ask.
Intro 38:12
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke.
Intro 38:31
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, They’ll not only help you better understand your condition, but they’ll also help you take a more active role in your recovery. Head to the website. Now, recoverafterstroke.com and download the guide. It’s free.
Patrik Hutzel 38:51
One thing that I keep saying to my audience over and over again, and I believe it applies to your audience is that the biggest challenge for them is that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights, and they don’t know how to manage doctors and nurses in those situations.
Patrik Hutzel 39:15
I have no idea. And I do believe the very same applies to your audience. You know, they don’t even know where to start and you putting out this pamphlet or this white paper, whatever you want to call it is a starting point. You know, I have a similar white paper on my website, the Instant Impact Report.
Patrik Hutzel 39:32
It’s a guide for families in intensive care very similar to Okay, Where Do You Even Start when You are Completely Overwhelmed by What’s Happening All Around You You know, I can only recommend it for everyone who is faced with a stroke, you know, to go to Bill’s website at what’s your website again Bill?
Bill Gasiamis 39:53
recoveryafterstroke.com. And one of the things I’d like to add, Patrik is that asking your doctor The question for example, what else do I need to do for my loved one, other than the services that you’re providing? Might be a good way to start the conversation and get you thinking about what else can be done. Who else can I speak to?
Bill Gasiamis 40:15
What other tests do we need to do those types of things? And one of the main things that I think was somebody who’s had a stroke or a neurological injury, traumatic brain injury is to get an evaluation from a neuropsychologist, so it is a psychologist. So it’s not like psychological counseling. It is a psychologist who will assess the deficits that that person who has experienced the stroke is experiencing and must recover from.
Bill Gasiamis 40:46
And with a neuropsychologist’s report, you will be able to direct the resources of the recovery much more efficiently because you will know specifically where in the brain that injury is, and what rehabilitation needs to be. What steps towards rehabilitation need to be taken? So asking simply for a neurological assessment or neuropsychologist assessment will change the way that the recovery, resources are applied to the person’s recovery. Rather than being haphazard, they can be more focused and more targeted.
Bill Gasiamis 41:25
Can you see the comment from Laurie, can you see that?
Patrik Hutzel 41:27
I can’t.
The difference between a stroke victim from a stroke survivor

Patrik Hutzel 41:28
I’ll read out the comment from Laurie here who says I’m four years post hemorrhagic stroke and never recovered. Also, I consider myself a stroke victim, not a survivor.
Bill Gasiamis 41:45
Well, that’s a really important distinction to make. So if you’re a stroke victim, you’re in a situation where you’re allowing what’s happened to you, to impact you negatively, and only in a negative way. If you’re a stroke survivor, you’ve already overcome one thing, you didn’t die from the stroke. So we have already overcome a very big challenge.
Bill Gasiamis 42:12
And as a survivor, you are being guided to help you look for solutions to problems, because that’s what we generally need to be. Stroke creates many, many, many problems. If you always focus on problems, you will get more problems. If you focus on solutions to problems, you will get more solutions.
Bill Gasiamis 42:36
As a survivor, a survivor needs to focus on solutions, A victim will not be able to change their mindset to focus on solutions, they will focus on all the reasons why this happened to them. What did I do wrong in a past life? Why has God punished me? None of that is useful for improving your outcomes for a good recovery. So maybe, hopefully, that is a way now that she’s heard the term survivor. Maybe that’s a way to just change the conversation in their head about how to go forward.
Patrik Hutzel 43:13
Already. I think that’s that’s Laurie. Thank you for the comments, Laurie. But I also want to acknowledge you know, what Bill said, but like Bill said, you know, we’re already changing the conversation here. Yes, up until today, you’ve considered yourself a stroke victim. But now you are already seeing that you can look at your situation differently, that you are a survivor. And change the conversation around stroke, change your mindset around stroke. Bill, are you familiar with Dr. Joe Dispenza, as well?
Bill Gasiamis 43:44
I’m familiar, but not intimately.
Patrik Hutzel 43:48
Right, right. Look, I’m not familiar with it intimately either, but I have watched some of his videos on YouTube. Laurie, I would also like to point you to Bill’s work. I would also like to point you to Dr. Joe Dispenza’s work, just type into Google Dr. Joe Dispenza.
Patrik Hutzel 44:05
He I believe is doing some groundbreaking work with helping people from all walks of life with overcoming their limiting mindsets, but also their limiting condition. So I encourage you to look at Dr. Joe Dispenza’s work as well. Bill, coming to your book, tell us about your upcoming book. You know what’s in the book, what do people get? Why have you written it?
Why the stroke is the best thing that ever happened to Bill Gasiamis
Bill Gasiamis 44:32
Okay, it’s a strange title. I said that at the beginning, right? The long title is The Unexpected Way That The Stroke Became The Best Thing That Happened To Me. That wasn’t the case at the beginning of what happened in the podcast while I was speaking to people and interviewing people about their stroke journey.
Bill Gasiamis 44:53
I found myself a couple of times accidentally slipping out of my mouth saying, “I think this is the best thing that happened to me” and then I got curious as to why. Why is it the best thing that happened to me? I’m living with daily deficits, my balance isn’t the best, and my numbness is on my entire left side.
Bill Gasiamis 45:12
I’m not as physically active as I used to be. I have pain, I have muscle stiffness, I have cramps, I have all these things that I never had before. And yet, I still think that stroke was the best thing that happened to me the reason is, is that I’ve had a very huge personal development experience where I’ve grown personally from this situation.
Bill Gasiamis 45:35
And one of the ways that I grew was my mindset was all about finding solutions, you know, recovery, recovery, more, not problems, just solutions, just solutions. So I had an amazing mindset. And then, when I didn’t have answers to some of those questions, I reached out to other stroke survivors. And they filled me in on some of the things that I didn’t know that I needed to know, that helped me with my recovery.
Bill Gasiamis 46:04
One of those things was my take on nutrition, what I thought was healthy, which wasn’t. So in that, I then found that there is a community of people that for the first time in my life, truly, deeply understand me, or the stroke survivors who have had a stroke, really relate to me, and understand what I’m going through. And that was a unique and rare thing, I’d never come across people who related to me so deeply, and I relate it to them.
Bill Gasiamis 46:31
And I thought that was amazing. So I grew this group of people that deeply understood me. In that time, I discovered the benefits of improving my sleep. I then discovered the benefits of changing my nutrition. I then discovered the benefits of exercise, even though I wasn’t able to exercise the same way as before, any type of exercise is beneficial.
Bill Gasiamis 46:56
And then I discovered that I needed to do something to help other people as I was being helped, I found that helping other people was helping me and helping them. So I discovered that this might be one of my goals, I might have discovered my purpose in that the podcast was begun so that I can connect with people who can help me but then it’s helping them.
Bill Gasiamis 47:22
And then they are telling me that strikes the best thing that happened to them because of how they’ve had personal growth. I’m saying the same thing. And then I wanted to know what was what did we had in common. How did we all get there to this point where we can say a stroke is the best thing that happened to us? And it’s not what I expected. But what came from it was 10 things that these people had in common.
Bill Gasiamis 47:44
And, and many people say that strokes are the best thing that happened to them. Many people say that cancer is the best thing that happened to them and the heart attack they had was the best thing that happened to them and all these strange people say that their medical condition was the best thing that happened to them.
Bill Gasiamis 47:58
So anyway, the 10 things they had in common briefly, or that they had a recovery mindset. They had an emotional intelligence upgrade. So they connected to their heart, and they found a way to mend their relationships and improve their relationships. They made access, they access the gut and the gut-brain by taking steps to upgrade their identity and choosing to label themselves in a different way than I’m just somebody who goes to work. I’m a father, I raised children, and they enhanced their identity.
Bill Gasiamis 48:36
And they became more than just the labels that have given themselves. They improve their sleep, they improve their nutrition, and they become more physical. They started a meditation practice to go inside, focus on their breathing, calm themselves, and learn about what’s happening inside their body. They discovered their purpose by doing things for other people and supporting other people. And at the same time, they found a supportive community that deeply understood them.
Bill Gasiamis 49:03
Now those 10 things that they did became the chapters. In my book, I discuss a story at the beginning of each chapter of one of the people who I interviewed for the book. And then we go into emotional intelligence, for example, would describe what it is a little bit of scientific history and background into that, how it applies to life, and how you can improve and upgrade it.
Bill Gasiamis 49:26
So it’s like a how-to do the steps to get to the point that strike is the best thing that happened. And I’m not saying for one minute, that it’s the best medical thing that’s ever happened. I’m not saying that at all. I’m saying it’s a possibility for post-traumatic growth, and post-traumatic learning, and, and just a different way of seeing things in life. And that’s basically what I experienced.
Patrik Hutzel 49:52
That’s amazing Bill. And I think that’s also it’s amazing and it’s very encouraging because you know if you can look thank God, I’ve been pretty healthy all my life, you know, thank God for that. But any challenge that has been thrown at me on a personal or professional level and you can overcome it is the best thing that can happen to you.
Patrik Hutzel 50:13
It is because you can show you can overcome it, nothing really can faze you, you know, and I can see how you would take that perspective now. But it also takes a lot of courage, I believe, to look at it that way, and to share that with the world. And I hope that anyone who’s watching this or listening to this, you know, can overcome their challenge as well. And I know that Bill can help you with that, Bill’s book Bill’s podcast, you know, he’s done it. That means you can do it. You know, there’s no question about that.
Bill Gasiamis 50:54
I believe so. Look, in the podcast episode that is going out on Monday. So tomorrow, I interviewed Clara Woods, she’s an amazing young lady who experienced a stroke in her mother’s womb before she was born. And now Clara is 17. She has become an artist. She has exhibited in the United Kingdom, in Florence, Italy, and Japan, and now is attempting to set up an exhibition in New York.
Bill Gasiamis 51:27
Now, these are a family of people who have had to live through a perinatal stroke and the impact that that has caused to their daughter. As a result of that Clara is not verbal, she cannot speak but she understands three languages. She has become an artist, and she has had an exhibition. And she is not meant to be doing any of those things.
Bill Gasiamis 51:52
Doctors told the family that she was going to be in a vegetative state. So I would encourage anyone listening to just go to the recovery after stroke podcast, and listen to any one of those 265 episodes, especially Clara’s one tomorrow, because it’s my favorite episode so far. And just get a little bit of an understanding of how thinking differently can completely and change your life for the better and improve your life, even after a stroke.
Patrik Hutzel 52:30
If I had $1, for every client that we worked with, over the years where, you know, ICU teams have told them oh they won’t survive, they’ll be in a vegetative state for the rest of their lives. And the minute you challenge this, or you keep going regardless, things will change over time. Now I would you know, there’s always patients that don’t survive, but it’s the minority.
Patrik Hutzel 52:52
You know, it’s the minority. You and I wouldn’t be here today if our ancestors hadn’t overcome many challenges during times when there weren’t even hospitals. You and I wouldn’t be having this conversation today if our ancestors hadn’t been incredibly resilient, without all the bells and whistles that we have today.
Bill Gasiamis 53:17
Indeed, we are living in the best times ever, If you’re going to have a stroke, there have never been more resources to support your recovery, you just have to look for them. And you have to know where to find them. Hopefully, what I’m doing is supplying some of those resources and helping people find the resources that they need.
Bill Gasiamis 53:37
And I’m a bit of a connector. It’s what I do. So I live in Australia, in Melbourne, but I have connected people in New York, who have had a stroke and need to talk to another stroke survivor. I mean, it’s weird that I’m doing that from Australia. But if you know who to ask, you’ll be able to find people to support you.
Patrik Hutzel 53:55
Bill. You know what I’m I believe that the viewer said we’re having a probably mainly in the US that the viewers are alive here now, probably mainly in the US. I mean, I know you are talking to people in the US, I’m talking to people in the US every day. So what we’re doing here, even though we’re both in Melbourne, what we’re doing here is addressing a worldwide issue.
Bill Gasiamis 54:19
You nailed it, Patrik. That’s what I found one of the misconceptions that I had before I started this journey was that we’re all different and that different things happen. And we react differently. We have different needs and different requirements. X, we’re all pretty much the same. Everyone wants to be well healthy, and looked after they need resources to encourage them to recover. And they all need community.
You’re not alone – Bill Gasiamis
Bill Gasiamis 54:44
They all need support. Everyone is the same no matter which community you come from, what your religious background is, or what your ethnicity is, it doesn’t make a difference. everybody’s the same. So I’ve been pleasantly surprised by that. And I love the possibility that my upbringing in Melbourne is going to be good enough to support somebody who’s going through stroke recovery in Canada, in the United States, in New Zealand, in Mexico, in Italy, in Dubai, wherever they are.
Bill Gasiamis 55:19
It makes no difference so, yeah, and what that hopefully does is make people not feel like they’re going through it alone. I’m the only one that this has happened to. And nobody knows what it’s like. You’re not the only one. And absolutely, people know what it’s like, and they relate to you.
Patrik Hutzel 55:39
Absolutely. And look, just by the comment from Laurie, you know, obviously, by what we’ve discussed today, Laurie could already relate to it. And, Laurie, I hope that just by you coming on to this to this show, you know, hopefully, we can change your perspective. In your situation going forward, you will be a survivor, not a victim, you now have the tools, and resources at your disposal.
Patrik Hutzel 56:05
What to do next. You know, change, change your outlook trends change your perspective. Bill, we got to wrap this up in a minute. We do have time for one more quick question. We can quickly get to that if anyone wants to type in another question. But Bill, where can they find your new book, if people are interested?
Bill Gasiamis 56:25
So if they go to recovery after strike.com, that’s going to be the best place to get updates on the stage of my book. It’s not out yet it’s been edited. And now we’re doing the final layout. And we’re just putting it together and making a book for the first time. I’m not sure how long that takes, my editor is in charge of that and my publisher, so that’ll happen in a little while.
Bill Gasiamis 56:45
But if they just go to recoveryafterstroke.com and subscribe to the podcast on iTunes or Spotify or Stitcher or wherever they get their podcasts from, I’ll update people regularly. And soon, but not yet, I will release an opportunity for people to download the first chapter of the book for free. So they’re just going to keep coming back to recoveryafterstroke.com and checking in there, just so that they can be notified as soon as that’s a possibility.
Patrik Hutzel 57:16
That’s amazing. Thank you so much, Bill. Appreciate you coming on to the show and sharing all of your wisdom with my audience.
Bill Gasiamis 57:26
My pleasure.
Patrik Hutzel 57:28
Great, great. So thanks, everyone for coming onto the show and for watching the replay. Now if you have a loved one in intensive care, go to intensivecarehotline.com. Call us at one of the numbers at the top of our website, or simply send us an email to support us at intensivecarehotline.com with your questions.
Patrik Hutzel 57:48
Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There you have access to me and my team 24 hours a day in the membership area and via email. And we answer all questions intensive care related.
Patrik Hutzel 58:03
I also offer one-on-one consulting and advocacy for families in intensive care over the phone, Zoom, Skype, WhatsApp, or whichever medium works best for you. I also talk to doctors and nurses directly if that’s what you want. I also represent you in family meetings with intensive care teams. So that you have someone on your team that speaks the medical language.
Bill 58:24
Thank you so much for joining us on today’s episode. I hope you liked this episode, It was something different and gave you an insight into my thoughts on some of the topics that are seriously necessary for you guys to consider after a stroke. 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 58:51
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. If you are 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. Thank you again for being here and listening. I truly appreciate you see you on the next episode.
Intro 59:15
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals’ opinions and treatments. Protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 59:32
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 59:49
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 injuries, circumstances, or health Both objectives do not use our content as a standalone resource to diagnose, treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 59:49
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:00:34
Medical information changes constantly. While we aim to provide current quality information in our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency, or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with 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 Survival Chances After Stroke with Patrik Hutzel appeared first on Recovery After Stroke.
1 hr 2 min
August 28, 2023 Life After Perinatal Stroke | Clara Woods & Betina Genovesi
Understanding Perinatal Stroke: Causes, Symptoms, and Management
Welcome to our comprehensive guide on perinatal stroke, which affects newborns and infants, their families, and caregivers. This article delves into the intricate details of perinatal stroke, including its causes, symptoms, and effective management strategies. We aim to provide you with a well-rounded understanding of this condition and equip you with valuable insights to navigate the challenges it presents.
What is Perinatal Stroke?
Perinatal stroke, also known as neonatal stroke, refers to a disruption in the blood supply to a baby’s brain that occurs either before, during, or immediately after birth. This can result from various factors, including blood clotting disorders, infections, and issues during fetal development. The consequences of perinatal stroke can vary widely, impacting a child’s neurological development and overall quality of life.
Causes of Perinatal Stroke
Perinatal strokes can stem from various factors affecting the developing brain. Some potential causes include:
Blood Clotting Disorders: Conditions that affect blood clotting can increase the risk of strokes in newborns. These disorders may be genetic or acquired.
Infections: Maternal infections during pregnancy can lead to inflammation and affect the blood vessels in the developing fetus’s brain.
Vascular Issues: Abnormalities in blood vessels, such as narrowing or blockages, can restrict blood flow to the brain and trigger strokes.
Heart Problems: Congenital heart defects can lead to the formation of blood clots that may travel to the brain and cause strokes.
Symptoms and Diagnosis
Identifying perinatal stroke can be challenging due to the limited communication abilities of newborns. However, some common symptoms include:
Seizures: Newborns experiencing seizures may be exhibiting signs of perinatal stroke. Seizures can manifest as twitching, rhythmic movements, or loss of consciousness.
Weakness or Paralysis: One side of the body may appear weaker or paralyzed compared to the other.
Difficulty Feeding: Babies with perinatal stroke might have trouble feeding due to oral-motor problems.
Developmental Delays: As the child grows, developmental delays in speech, motor skills, and cognitive abilities may become evident.
Diagnosing perinatal stroke often involves combining neuroimaging techniques, medical history analysis, and thorough physical examinations. Early diagnosis is crucial to implementing effective interventions.
Management and Treatment
The management of perinatal stroke requires a multidisciplinary approach involving pediatric neurologists, physical therapists, speech therapists, and other healthcare professionals. Treatment strategies may include:
Physical Therapy: Physical therapy helps improve affected infants’ motor skills, muscle strength, and coordination.
Occupational Therapy: This therapy focuses on enhancing the child’s ability to perform daily activities and develop fine motor skills.
Speech Therapy: Speech therapists assist in addressing speech and communication challenges that may arise due to perinatal stroke.
Medications: In some cases, medicines may be prescribed to manage seizures or prevent blood clot formation.
Conclusion
Perinatal stroke is a complex and challenging condition that requires early detection and comprehensive management. By understanding its causes, symptoms, and available treatments, we can make informed decisions that positively impact the lives of affected infants and their families. Remember, each child’s journey is unique, and a tailored approach to care can significantly affect their developmental outcomes.
Recovery After Stroke Episode 265
Clara Woods is a Perinatal Stroke Survivor and an artist who has exhibited her work in Florence, Japan, and the United Kingdom.
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02:44 Not a typical recovery after stroke podcast interview
06:09 Perinatal Stroke
12:53 Taking the win whenever you can
20:48 Raising money for support services
34:22 How to dream big with adversity
40:57 What is the purpose of the podcast?
53:08 Clara’s website
1:04:50 Dealing with ADHD
1:16:46 Advice on how to prepare for school
Clara Woods & Betina Genovesi 0:00
Carlo is now terrible because he’s opened. I don’t know what sweets.
Bill Gasiamis 0:07
Carlo, how are you? This is a podcast, or don’t you guys understand that podcasts are serious? We can’t be interrupting all the time.
Clara Woods & Betina Genovesi 0:19
I’m ashamed.
Bill Gasiamis 0:24
Carlo, what’s that biscuit?
Clara Woods & Betina Genovesi 0:25
It’s from the Girl Scouts here in America. They sell many of them, and someone brings us because both have ADHD.
Carlo Genovesi 0:48
So there’s not enough sugar in the house?
Clara Woods & Betina Genovesi 0:52
There are drinks, but everyone brings ice cream, so it’s impossible for all the fathers to get their ice cream.
Clara Woods & Betina Genovesi 1:02
They don’t get fat. This is the thing I get, but they don’t.
Bill Gasiamis 1:11
Wow.
Clara Woods & Betina Genovesi 1:12
Amore, you can say a little bit yourself.
Bill Gasiamis 1:19
Is Carlo going to join us?
Carlo Genovesi 1:22
Yes, Clara was kicking me away.
Intro 1:30
This is the Recovery after Stroke podcast. With Bill Gasiamis, it is helping you navigate recovery after a stroke.
Bill Gasiamis 1:42
Hello, and welcome to the Recovery after Stroke podcast. If you are a stroke survivor with a story about your experience, join me on the show. This is the perfect time for you to join me on the front and share your stroke story.
Bill Gasiamis 1:58
The interviews are not scripted; you do not have to plan for them. All you need to do to qualify is a stroke survivor who wants to share your story in the hope that it will help somebody else going through something similar.
Bill Gasiamis 2:11
Now, if you’re a researcher and you have some information you’d like to share about a recent study, some findings, whatever it is. You’re looking to recruit people into your studies, perhaps you might also wish to reach out and be a guest on my show if you have a commercial product that is stroke-related that you would like to promote.
Bill Gasiamis 2:30
There also is a path for you to join me on a sponsored show episode. So feel free to reach out. Now, go to recoveryafterstroke.com/contact and fill out the contact form, explaining briefly which category you belong to.
Not a typical recovery after stroke podcast interview

Bill Gasiamis 2:44
And I will respond with more details about connecting via Zoom. In today’s episode, I am joined by Betina Genovesi, Clara Woods, and Carlo Genovesi. Now, Clara Woods is a stroke survivor who experienced her stroke in utero 17 years ago; she wasn’t even born yet.
Bill Gasiamis 2:45
With the support of her family, she has overcome immense odds and become an artist who has exhibited her work in Europe, Japan, and the United Kingdom. She is looking forward to the next exhibition the family hopes will take place in New York.
Bill Gasiamis 3:22
Now, this interview started quite commonly; it was pretty structured the way I always do my interviews, and soon enough, the discussion became something out of my worst nightmares, when usually, I wouldn’t be comfortable with an interview being interrupted by so many people in so many ways.
Bill Gasiamis 3:45
But in this case, it was the perfect way for you to experience Clara’s family, the way Betina and Carlo run the household. And I felt like I was visiting their home rather than having an interview with them.
Bill Gasiamis 4:02
So we get interrupted by cookies, we get interrupted by text messages that are pranking Mum, and we get interrupted by the need for Carlo to distribute cookies for people to eat. It is just unbelievable. And it’s not usually what I would expect in a podcast.
Bill Gasiamis 4:22
However, it was perfect, and I loved chatting with the family. The work that these guys do raising awareness for people with disabilities and the efforts they go to to create an extraordinary life for their siblings, the children, and the family is just a fantastic example of what is possible after a stroke.
Bill Gasiamis 4:48
So, if you are inspired by stroke recovery stories of people who have made it unique, overcome unique challenges. This is the episode for you. I could go on and talk about this forever. But it would be best if you listened to the attack. And if you can see, you can get a feel for what this episode was about. Go and look on the YouTube channel.
Bill Gasiamis 5:16
If you go to the YouTube channel, you’ll be able to see all the family members interacting and being a part of this show. Sometimes, everyone’s talking all over each other. So it’s just a fun episode. And it goes to show that there is more than one way to go about stroke recovery and how to overcome all the challenges that stroke can create. So please enjoy this episode like I did. Betina Jenna Vesey. Welcome to the podcast.
Clara Woods & Betina Genovesi 5:50
Thank you for having me. My pleasure.
Bill Gasiamis 5:53
Thank you for being here. Your family is famous, would you say?
Clara Woods & Betina Genovesi 6:02
A little bit, I can say.
Bill Gasiamis 6:06
Tell me a little bit about why.
Perinatal Stroke
Clara Woods & Betina Genovesi 6:07
We have a daughter, Clara; she’s 17 and had a stroke when I was pregnant. And so the doctor said she would be a vegetable. Today, Clara is 17. She can’t speak, write, or read, but she understands Portuguese, Italian, and English.
Clara Woods & Betina Genovesi 6:29
And when she was around ten, I asked, “What will she do when she grows up?” You know, she will not have the same opportunities as the others. So, I decided to start doing Instagram for her. And because I’m always in marketing.
Clara Woods & Betina Genovesi 6:49
Then she started painting and fell in love with Frida Kahlo, and she asked me to do an exhibition in New York. At that time, we were living in Italy. Because I’m from Brazil, Clara was born in Italy. And then we started, and it went viral.
Clara Woods & Betina Genovesi 7:11
So, in the end, I showed my company, and I started working for Clara to make things happen. And also to be together so that she can have more experience. And so yeah, we had some videos viral on social media.
Bill Gasiamis 7:33
What’s very interesting is that I knew about Clara before you contacted me many years ago. And I used to see the work that you guys did to make posts and raise awareness is the way that I see it is raise awareness. And I was just amazed that the whole thing even existed, the entire following and social media thing, which wasn’t possible 15 years ago.
Bill Gasiamis 8:07
It wasn’t possible at the beginning of this journey that Clara had to go on because of the stroke. But I love that you guys are now working as a family to support her and, at the same time, doing amazing things and raising awareness. Tell me a little about what happened when she was in utero that caused the stroke. Do they know?
Clara Woods & Betina Genovesi 8:36
No, we did all the genetic exams, everything. And they think it’s kind of an accident that just happened. And because of the stroke, she had a bad formation. So, the brain damage extended mainly to the left side of the brain. So it’s missing some parts. And I think the gray area is not; I’m not good in all these terms. I know a lot of moms are, but I’m not.
Bill Gasiamis 9:11
Fair enough. You’re just dealing with your baby, whatever the situation was,
Clara Woods 9:16
Mostly, we decided to make her leave. And I think it was a good point whenever we accept straight away. And we never block ourselves. I never thought of Clara as having a disability and made this thing the most important of our lives.
Clara Woods & Betina Genovesi 9:37
And when we went to the newspaper for the first time, I got a lot of contacts. And one of them was a group of kids that had a stroke. At that point, I never imagined that many kids could have the same, and I was so grateful not to have been in that group before.
Clara Woods & Betina Genovesi 10:00
Because mostly, it says that you have to have that path that everyone will have. So we will have these, and you probably will have a seizure, and you can do this, and things will happen. So, today, you know, it’s a difficult decision.
Clara Woods & Betina Genovesi 10:22
And I’m saying this: I love the group. But for us, when Clara had her first seizure, I knew she could have one. So we live much more light, her process of discovering things and not getting so anxious about the process.
Bill Gasiamis 10:44
I love it; you must be in the flow of the process. So whatever happens, we’ll deal with it when it happens, if it happens, rather than all the problems that can occur. Let’s worry about all of them. At the same time, most of them won’t come true, and most issues won’t happen. And then it takes your attention away from what it is precisely that you need to be focusing on and paying attention to. So, in this case, it was a seizure. How old was she when she had her first seizure?
Clara Woods & Betina Genovesi 11:18
I think she was around five or six, something like that. And then she was more upset. And so she seems like she is dying; it was terrible. We didn’t know. And then she had some more. And when it started becoming more frequent, like every two months, we gave her medicines. And after a while, like then, she didn’t head for three years, and we decided to stop the medication.
Bill Gasiamis 11:59
And now that you’ve stopped the medicine, does she still have seizures?
Clara Woods & & Betina Genovesi 12:04
We stopped like six or seven years ago, so it was great. And she didn’t have one, and she had one after her surgery. But the doctor said it was probably because of the anesthesia. And actually, this is something like a miracle. Because just a second, my husband is making noise here, and I’m like, stop. Sorry about that.
Bill Gasiamis 12:37
You don’t worry; you guys do what you have to do. I understand the stuff going on; do what you have to do; it doesn’t matter to me. I love that things go on in your family no matter what. You have to get things done.
Taking the win whenever you can

Clara Woods & Betina Genovesi 12:52
So now, when we went to a new neurologist, and I’m needless to say, I’m always afraid of this seizure thing. So even if she didn’t head for a long, it’s like a ghost in, you know, when she’s sleeping, I’m worried, and then these new neurologists saw her exam and said, Where are the seizures? And we said she does not have, and he was imposing.
Clara Woods & Betina Genovesi 13:22
Why she’s not having even, you know, the electrical different functions. Because he said for her brain, she should always have seizures. So it’s hope to give to the families that sometimes, even if the situation is horrible, things can go well.
Bill Gasiamis 13:44
Absolutely. You take the win whenever you can. If that happened by mistake by miracle, whatever the situation, that’s fantastic. Just go with it, be happy with it, and be on the lookout for other seizures. But the doctors in Italy aren’t the medical system very supportive of people who have had strokes, or is it challenging to navigate?
Clara Woods & Betina Genovesi 14:13
I think it’s not easy in Italy; I’m from Brazil. So when I look with my Brazilian eyes, I can say Italy is perfect because in Brazil, you know you have not so much as we have experienced in Austria, so our strike is fantastic.
Clara Woods & Betina Genovesi 14:33
So Italy is not good enough. So it depends, but we had good support. Things take a little bit longer, so sometimes you must wait a long time to have it, but I think it was good. And they have prominent stroke specialists. We never went by mostly, you know, because of our different ways of moving, but I know in this group that I am that they are good too in following the kids.
Bill Gasiamis 15:15
Is Clara, did you have other children?
Clara Woods & Betina Genovesi 15:19
I have one son of 11 years. Carlo has two girls from his first marriage, 32 and 31, and the second has muscular atrophy.
Bill Gasiamis 15:35
So, it’s not unfamiliar. Challenges with neurological disorders are not unknown to the family.
Clara Woods & Betina Genovesi 15:47
I think this was one of the things that made us slightly different. Because Carlo had his first experience with it’s degenerative disease, it’s always getting worse, so his daughter is in a wheelchair all the time. She cannot move a lot, but she works full-time. She lives by herself with help. So
Bill Gasiamis 16:16
Fantastic. So, all of Clara’s siblings are older.
Clara Woods & Betina Genovesi 16:20
Yeah, Davi is younger. Yeah, my boy.
Bill Gasiamis 16:26
Okay. So what’s life like for Clara? I know that she has a lot of things that need to be taken care of to get her stay that day started. So, what does the day look like? Wake up in the morning. And then what then.
Clara Woods & Betina Genovesi 16:43
Right now, we went through a rough situation after her surgery because she had surgery to be able to walk better. She had her right foot with the toes going like this. So we need to do surgery. We also did this in the hip in the femur because her leg was going inside at this stage, so I’m from writing to all wrong, so she had complex dystonia for one month, and now her excellent foot has a big dystonia in the toes. So it’s five months that we are dealing with this.
Clara Woods & Betina Genovesi 17:27
Mostly, when it’s normal, she goes to school, so she gets up and goes to school. And when we have extra activities, that’s a lot. We try to manage every balance also; she gets not so tired and does things. Because we are not attending events, having our events, meeting people, or doing content, it’s an enslaved person creating content.
Bill Gasiamis 18:00
Yeah, I understand. I only have a podcast, and everyone expects me to have social media stuff, short clips, and this and that. Oh my gosh, I do not have the time. But I appreciate that you guys somehow find the time to create content. But it seems essential for Clara’s recovery journey and the support.
Bill Gasiamis 18:26
What does the content help you to achieve? What does it help you do other than raise awareness because? Raising awareness is one thing, and that’s amazing. And I love that her inspirational story shows that people don’t need to follow the regular path, whatever that is. What do the content and the social media following help you do? What does it support?
Clara Woods & Betina Genovesi 18:52
It’s a lot of things; in the beginning, I never imagined to be like where we are today., Still, with time, I understood that a lot of people like they go out they write us, and also extreme cases like I was trying to suicide and then I saw you. I didn’t do it, and those are things that are so powerful. So right now, I say I’m no longer in work, but I like more a mission because we are working with this, so we are investing all our energy and money what we have to make this happen.
Clara Woods & Betina Genovesi 19:37
And it’s not easy because we depend on Clara for this ability with her teenage years and everything. I think the power of community is enormous. So when we can help someone, or they can help us or, you know, exchange things, everything. If I say like I would, sometimes I say I would like a panettone, and someone sends it to me. It can be stupid, but we feel okay.
Clara Woods & Betina Genovesi 20:08
Someone cares, you know. And right now, we have this story about the beach wheelchair. So, some followers saw Carlo pushing her with an ancient wheelchair on the beach. And Carlo, you know, he can do everything. So, he does not care a lot. But people are, how are you doing this? The beach should be assigned a wheelchair, but it’s also not easy to organize life and always go to that beach when the wheelchair is there; you know, those not in our situation don’t understand all we need to manage.
Raising money for Clara Woods

Clara Woods & Betina Genovesi 20:48
And then a woman wrote me and said, I contact the manufacturer to give you a beach wheelchair. And I said, okay, and the manufacturer said they would not do that. And she created a GoFundMe. And I was a little bit uncomfortable because it’s always asking for money, you know, and I think we have enough, even if a beach chair would help, but okay, let’s see, we didn’t do it ourselves.
Clara Woods & Betina Genovesi 21:24
So she did. And she was so lovely. And she was trying, you know, to help. And then, in five days, they reach the goal. And even without publishing so much, I was a little bit shy about posting a lot. So it was so powerful when we see these like, okay, people are caring about orders, they are trying to help. Now I think about who we decide to buy to and donate one so we can share, you know, what people are giving to us.
Bill Gasiamis 22:01
Beautiful. That’s amazing. So I asked you on purpose because I wanted to understand what happens and how it happens. So, I’ve just completed the manuscript of my book. Now, the title, not everyone’s going to like it’s called stroke, the best thing that happened, okay, not everyone’s going to like it and understand why because it’s not the best thing that happened to everybody.
Bill Gasiamis 22:25
And it wasn’t for me. However, in one of the chapters, a section where I talk about what people need to do to raise money to achieve what they want to achieve, it might be necessary to raise money. And one of the things that I suggest they do is set up a GoFundMe page; it is a service that has never been available before.
Bill Gasiamis 22:52
In the past, it was so hard to develop support services that the community could put in a few dollars each and then raise 1,000, or $150, or whatever it was; it didn’t matter. But I think it’s essential. And I love the fact that you’re a little bit uncomfortable with it. But the reality is, even though the chair wasn’t 100% necessary because you guys had a chair, it was old, and it wasn’t the best chair, it still worked.
Bill Gasiamis 23:28
But what I love is the idea that for somebody that’s not in your position listening to this, hopefully, they can feel comfortable to make a request of somebody and say, Can you please set up a GoFundMe page and let’s see if we can raise money for this particular thing that I need for my legs. It might be it might be a specific structure of support, or it might be for rehabilitation of my arm.
Clara Woods 23:56
Yeah, because I think when we are as a family, we are blessed and have opportunities from different countries. So you know a lot of things. But when you come from many families, they struggle to bring food to their houses. And even now, we’ve got surgery. I told Carlo how people can manage because we have the system but ordinary people working, how they can manage to bring the situation to a good point.
Clara Woods & Betina Genovesi 24:31
Carlo is dedicated 100% to Clara’s PT, and we can connect these with our business that social media is our E-commerce. It’s what we are doing, but we want to know how other families could do the same. And in any case, we struggle because we don’t have time for ourselves. You see, it’s five. After a prayer, okay, it’s like a lot.
Clara Woods & Betina Genovesi 25:04
We have some friends, my mom, but it’s not extra true that we have one day a week or something, and we feel that we are super we can do, but at the end of the day, we are okay. It’s too much. And I think it’s good when we have these tools that we can help, or people can help where we don’t find assisting the government in or in order place. It’s very; it’s not easy to receive, you know.
Bill Gasiamis 25:35
I understand, well, that’s a skill that you have to feel comfortable with and that you have to deal with. But I’m glad you’re thinking about it, even though somebody else set it up for you. I’m so happy that you said yes and donated another chair to another person. It’s amazing.
Bill Gasiamis 25:53
I specifically put that information in my book to encourage people to feel good about the fact that if they need specialized equipment that costs 1000s of dollars, and they can’t work, and insurance won’t cover it. Well, there’s nothing wrong with asking the community now. Our fantastic community is all over the world.
Bill Gasiamis 26:15
It never used to be we used to have small villages. I initially felt like this world situation that we live in is a negative thing and that we need to become closer connected to our village and our community square, and all the things that used to happen in the old days, you know, some near us.
Bill Gasiamis 26:38
But the problem is, in those communities, you don’t know many stroke survivors; you feel strange and different. And you don’t feel like you can be encouraged to inspire other people, for example, but here with a global community of stroke survivors and the same challenges you always faced, which is trying to support you 24 hours a day, seven days a week.
Bill Gasiamis 27:06
A child that has had a stroke with all those challenges, there should be something that you can do that’s easy, or when you should be able to get one when in this whole situation, you know, and I’ve spoken about under the heading which says fund your specialized equipment. Specifically, I think it is fantastic if you’re asking for money to fund specialized equipment.
Bill Gasiamis 27:31
And taking Clara down to the beach on that brand new wheelchair, I think, will give some people an idea that going to the beach is possible. And they didn’t believe that it would enhance somebody’s life. That’s going to make them feel better about the whole situation. It’s going to be so positive. It’s going to be such a positive experience. I understand why you think a little bit of discomfort. And I love that you mentioned that. But crowdfunding was invented for precisely that reason.
Clara Woods & Betina Genovesi 28:08
I know. Because in the beginning, when we started doing the business for Cara, she was 12. She was the first kid in Italy to have her own company because you need the judge there. It’s not like in America. So it was a process. We decided not to do a nonprofit. Because disability is always connected with no profit. So people feel better if they donate once and say, “Okay, I did my part.
Clara Woods & Betina Genovesi 28:43
And we always say, Okay, ay, Clara is an artist, so she needs to be recognized because she’s an artist and she has a disability. Still, it’s not that the disability you will buy for $10 because she has a disability and then it shouldn’t be a low price, you know, or because you feel like you feel pity for her and you buy so you like Harar to believe you don’t like, I say maybe not too good not to vote no. But you know, a nonprofit is much easier to do things.
Clara Woods & Betina Genovesi 29:23
In any case, many people ask why the painting was so expensive because she has milestones she did. She’s 17 And has three times to exhibit on Art Basel. You know, it’s not that when we go to Art Basel, someone pays for our ticket, or it’s just that I think many people think we are just millionaires. We are just playing, you know, and we are sweating, to make the business and all things, so I guess also this feeling of they deserve to be read, where people think or consider that we have help from the government or orders or should be, like for granted that we should get help or it’s not like this.
Bill Gasiamis 30:17
The person asking about the cost of the art obviously can’t afford it or doesn’t value the art. The experience of the person who’s had to go through 17 years of the stroke to create still something he doesn’t, they doesn’t love, that whole process, that experience, the life experience, and what the art means the fact that the skill exists is the miracle in itself.
Bill Gasiamis 30:49
Because a baby who had a stroke shouldn’t have this life experience at all, and that person can’t understand the Absolute amazingness of that piece of art. And if you can’t afford it, that’s okay. You can ask for one that costs a little less, a little smaller, or a postcard or something else.
Clara Woods & Betina Genovesi 31:13
Also, to raise awareness that people with disabilities have value. And they don’t need always to be seen as less or taken as less, or, you know, it’s a tremendous work to do and develop. But I think it’s also about people with disabilities believing in themselves, and it will be a difficult way to go. I know it still, changes a lot of our lives, but it takes a lot of stamina to see that they can do that even if Clara cannot speak but understands three languages.
Clara Woods & Betina Genovesi 31:58
You know, it’s anyone who understands how, and probably she paints in this way with so much emotion because it’s missing a part of her brain, and I think she has a lot of talents that are there, and no one wants to see them. Because it’s even in our family think about that. People say why are you doing this? It’s easier to put her in an Institute, so say you don’t understand anything.
Bill Gasiamis 32:37
It’s not easier putting somebody anywhere or doing anything. What’s easier is living life because at least you guys also get to live your life with Clara simultaneously.
Clara Woods 32:50
This is one of our goals because when we realized that we could, like if today I had my job, Carlo had his job, she would be just in school and with a babysitter. And at this moment, we have experienced so many things together; we can travel, be together, grow, and she can also have a role.
Clara Woods & Betina Genovesi 33:21
I forgot the word, and she can be someone in the society and, you know, have her challenges her things. I think it is essential to understand what people with disabilities can do because many kids grow up with parents saying they will not be able to do it and teachers, and it’s not because they are nasty or because they are afraid to give hope. You know?
Bill Gasiamis 33:53
Yeah, absolutely. Hello Clara, it’s so lovely to meet you. I’ve been following you on Instagram and social media. Were you in PT right now?
How to Dream Big in Adversity

Clara Woods 34:22
She was doing a special massage because her wrist was not opening up well. We just launched a course about how to dream big, even with the adversities that life gives, based on our experience and what we went through as a family. So Carlo Davi and Clara also speak about the things that we go through in the course, and in the beginning, I also didn’t know if I could do this because, you know, when we leave ourselves, it is one thing when we need to say to others, you should dream big you should do this it’s not easy the process.
Clara Woods & Betina Genovesi 35:15
We can dream big because when Clara said, Mom, I want to go to New York like Freda did. I said, Yes. Let’s try. I could be saying no, we will never get there. It will not be possible. Look at you; you have a disability. And I think this year has changed all our lives completely. We were in high school last week to share Clara’s experience, and it was the most powerful thing for me to see that through this experience. We can motivate kids to be usual. I never knew the terms.
Bill Gasiamis 35:59
Don’t worry about it. Nobody’s going to get offended. And if they do, they should stop listening. Yeah, regular, disabled, whatever the words are that I know that coming from your heart, don’t worry about it.
Clara Woods & Betina Genovesi 36:10
Yeah. And so these kids, when you see in the deepness, everyone needing help, everyone needs to believe, and you know, if social media and all these, it’s incredible what these kids have going on. So I was so happy to say, okay, we can give hope. People came after the sorry, but the ice cream guys came in.
Bill Gasiamis 36:42
No problem. Another little thing that happens: this is all good. Don’t worry
Clara Woods & Betina Genovesi 36:47
Clara wants to show you something in she has her AAC software. But she doesn’t like to use it because it’s too slow.
Bill Gasiamis 37:02
For people who are listening on audio instead of YouTube. This would be a good episode for you guys to watch on YouTube. So, I’d love to see what Clara wants to share.
Clara Woods & Betina Genovesi 37:16
She’s thinking.
Bill Gasiamis 37:18
Alright, that’s okay. Well, when she works, it actually can let us know. Well, it will. We’ll have a look then. So tell me about it. Tell me about New York. So I’ve been to New York. It’s a fantastic place. How did you guys go to New York? Was it on a mission to achieve, do something, or just visit?
Clara Woods & Betina Genovesi 37:39
We didn’t go yet. I gave her a book of Frida Kahlo. So she saw this page where Frida was in New York and showed me, and she said, Mom, I want to do the same. And we said, okay, let’s try. And then we started doing the exhibitions in Italy, it was 2018. So the first one was in Florence, where we lived. In the same year, we went to Japan for her exhibition and to Miami for Art Basel.
Clara Woods & Betina Genovesi 38:18
And then we went to London, and all over Italy, and I had this company of power wheelchair, so we lived a lot in these words. But I could not do both. And my heart was much more in the so I sold. Then we asked for a visa for her as an extraordinary talent. So she got the ticket. We decided to move to California because I always loved it here, and we are still waiting for the New York opportunity.
Bill Gasiamis 38:55
Okay, so at the moment, you guys are based in California.
Clara Woods & Betina Genovesi 38:59
Yeah, in Huntington Beach. It’s like 40 minutes south of LA.
Bill Gasiamis 39:04
Okay, understand. Are we ready?
Clara Woods & Betina Genovesi 39:11
We want to ask something. She wants to know what you do or what’s your story.
Bill Gasiamis 39:30
Okay. My story is in 2012, I had a brain hemorrhage. It was an arteriovenous malformation, a faulty blood vessel that burst and bled in my head. And then, six weeks later, he exuded a second time. And it created a clot about the size of a golf ball in my head. Inside, that clot stayed in my head until 2004, when I had another bleed and needed brain surgery. And then I needed to learn how to walk again.
Bill Gasiamis 40:07
And I needed to learn how to use my arm again. I was the first person I had ever met who had a stroke and didn’t understand it. So we lived, I lived at home, most of the time, I couldn’t work or do any of those things. My wife eventually returned to work. My sons were teenagers, so they were at school.
Bill Gasiamis 40:30
After the brain surgery, I felt like there was a big gap in Stroke Awareness and stroke support in the community of stroke survivors, and I felt lonely. And I didn’t understand how to reach or find more people. So, a friend suggested that I do something on a global scale; I didn’t know what it was or what it would mean.
What is the purpose of the podcast?
Bill Gasiamis 40:57
So I started the podcast. And at the beginning, it wasn’t called the Recovery after Stroke podcast; they had a different name. And then, it took about two years for me to understand that the podcast I’m going to have is about stroke recovery because that’s my expertise. That’s what I know; that’s the people I relate to. So I started the podcast. And now you guys will be, I think, almost Episode 260, something like that. And it goes to 60 countries.
Bill Gasiamis 41:30
And because of this podcast, I’ve met many amazing people who helped me write the book. And I love sharing stories of stroke survivors, what they have been through, all their challenges, what they have overcome, and what they have achieved. And this is the perfect story for me because it’s exactly what you guys are doing. And you’re doing it in a very different way. And I think that’s why you guys have such a large following.
Bill Gasiamis 42:01
Because it’s, you guys are going about things very differently. And I think you’re you’re, you’re breaking down barriers that existed about what is possible and what is impossible. And I love a good story where people say, No, we’re going to do something different. And then we will tell the whole world about it so that other people can do the same thing. That’s why this podcast is about, it’s about inspiring stroke survivors to do something different.
Bill Gasiamis 42:32
And to live an everyday life, an extraordinary life, a fantastic life, or whatever they want. And not to let something like a stroke get in their way. So that’s what I do. But I don’t do it enough. It’s still my part-time. In my part-time job, I also coach people worldwide with their stroke journey. So there are a few people I’m coaching from the United States, and there have been some from other countries.
Bill Gasiamis 43:06
At the beginning or the middle of their journey, they might reach out and say I need some guidance, some support, I need to understand what I should focus on. I coach people worldwide on how to recover from a stroke.
Clara Woods & Betina Genovesi 43:21
Nice, this is so important.
Bill Gasiamis 43:24
I think people need help and support.
Clara Woods & Betina Genovesi 43:28
Yeah, because sometimes I speak with moms and dads, and they want to know what we went through, how to deal with some situations, or what to expect. It’s mainly, you know, the kids that are they just discover about the stroke. So it’s essential to have someone to count on and be able to say doubts because people who do not go through this don’t understand. They can help but don’t understand what we go through.
Bill Gasiamis 44:09
If I’m honest, Betina and Clara, what I’m doing is I want to be an excellent example for my kids. My children hopefully go through their life healthy their whole life, but I expect at some stage in life, they will be given a huge challenge to deal with, whether it’s their own or somebody else they know and love.
Bill Gasiamis 44:35
So, I want to give them an example of what you can do with adversity. What is a different way forward? And if you want to do that, go for it because nothing stops you, and Clara is a perfect person for that whole thing. That’s precisely what we’re trying to do: be a good example and see if we can find a way to reach many people.
Clara Woods & Betina Genovesi 45:17
Our son says that Davi is stuck in a ride. I don’t think it’s true, but they are calling me. Sorry, our son is in a summer school in San Diego. He wants to see a word. And his friend just wrote me that they are stuck in a ride. But I think they are making a prank with me, you know? So they are calling. I said Carlo, you should answer because we never know. But it’s a prank for me because I wouldn’t say I like this ride. We don’t know. But we hope it’s just a joke.
Bill Gasiamis 46:13
You know that he has gone there today. He knows that you don’t like rides. So now he’s giving you a hard time about it.
Clara Woods & Betina Genovesi 46:22
And we saw a video another day of a ride broken. So I think it’s like just a prank.
Bill Gasiamis 46:32
I love it. Fantastic. So, New York. Are you guys planning to go there and do an exhibition?
Clara Woods & Betina Genovesi 46:41
We are in our plane plans. But we still don’t have anything because we are in two years and a half, so I’m still learning everything. You know how to move and how to make the connection. So we have a lot of projects going on, but it still didn’t happen. So, I think in the future? We will. But we don’t know when.
Bill Gasiamis 47:08
Not yet. Okay, cool. So what about you, you said earlier that there’s not a lot of time for you. What are some of the things you miss out on that you would love to be able to do every once in a while?
Clara Woods & Betina Genovesi 47:25
I’m thinking right now like going to the beach just one morning, you know, and because we live right near to the beach, mainly having the time to say okay, I cannot think if I have enough sales and things to say I can have one week holiday. Right now, Kara and I are working on this project. I think you know if you are not an employee but an interrupter, you know that you must do what you need to do. So, you noticed the other day I worked hard for two weeks, until midnight, doing the new website because we have a lot of followers on our website, but our conversion rates are low.
So I’m trying to understand how to market, the American market goes. But the other day, I was in bed with a lousy headache. So I said okay, my body’s saying stop. And also the marriage. I think it’s important to talk about marriage when you have, you know, if you have a kid with a stroke or siblings because of disabilities, it sounds like something that we need to invest in. Otherwise, we will lose. They seem Galanes it’s essential to pay attention to what’s going on.
Bill Gasiamis 49:06
Yeah. So other people need support, attention, care, listening, and help; they all need all those things. You included you, your husband, the siblings, and Clara; everybody needs to be heard, listened to and paid attention to.
Clara Woods & Betina Genovesi 49:26
Yeah, I think also ourselves to say okay, we need to have, I don’t know, one week, one day a week, or one night that we care for ourselves as a couple. We need days to go out just with the Wii. He is perfect. We try to include him in many things but you with the fact that car Clara is a little bit famous. It’s also difficult for him because sometimes all the attention goes to Clara more, you know, not just on the disability side, so be able to balance and because in the end, the most important thing, you know, like we are a couple if we break the family break together so,
Bill Gasiamis 50:16
Yeah, yeah. So is it just a matter of is it just a matter of you guys getting it in your head and finding a way to schedule me time? Or is it more complicated than that?
Clara Woods & Betina Genovesi 50:31
Now, it’s more complicated than that. Because we are, I’m, migrants, so it’s, we found a lot of friendly people here that they help, and are willing to say, okay, I can do, but you know, we’re still new. So, the number Guiro will take is still fresh. So I have my mom here. I can ask, but sometimes we are so doing things and thinking it’s more critical than Clara can do PT can do this and, and then we just forget, or we put out order priority, so
Bill Gasiamis 51:16
Okay, sounds
Clara Woods & Betina Genovesi 51:18
Evil does not help a lot.
Bill Gasiamis 51:21
Because she’s a teenager. Yeah, I understand.
Clara Woods & Betina Genovesi 51:29
Now, she’s worried about the Wii. You can go down if you want. No.
Bill Gasiamis 51:37
Okay, so I think it’s a matter of you guys just scheduling it in. So, not now. But in a month from now. Look at the calendar. See you Friday night. 6:30 pm to 9:30 pm. Carlo and Betina time. That’s it. Please do it now for one month time. And then when you get there, everything will line up to ensure you guys have Yeah. Three hours.
Bill Gasiamis 52:12
Yeah, watch a movie and eat an ice cream.
Clara Woods & Betina Genovesi 52:16
He wants to come together? He wants to spend time with me. She wants to spend time with me.
Bill Gasiamis 52:24
Saturday, the next day? Yeah. Okay. In one month. After your Friday with Carlo. You guys will get together to get a nice screen, watch a movie, whatever you like.
Clara Woods & Betina Genovesi 52:36
Okay. All right. We’ve now it’s Davi. With Davi. With and without. So it’s using the agenda.
Bill Gasiamis 52:48
Okay. First two hours with Davi. Last hour without?
Clara Woods & Betina Genovesi 52:55
Okay. Okay.
Bill Gasiamis 52:57
Problem solved. No worries. You let me know next time you have a scheduling problem. I will organize it for you.
Clara Woods & Betina Genovesi 53:04
Okay, every day.
Clara Woods website

Bill Gasiamis 53:08
I’ll be your official scheduler. So, the website is looking fabulous. I just clicked on it when you mentioned that clarawoodscollection.com. Yeah, it’s nice and bright. And if it was converting better, what would you like it to do better?
Clara Woods & Betina Genovesi 53:27
To convert better?
Bill Gasiamis 53:29
Yeah, what would you like it to do more? Because you feel like it’s, you’re a little bit uncomfortable with it now.
Clara Woods & Betina Genovesi 53:39
Yeah, we have the business. So we need to be able to make a business work on the business side. So we had, I think, 22,000 people going to the website this month, but the conversion rates were low. And I’ve been working in these for two years now. And I don’t understand how. So today, I called Shopify specialists; they are helping me understand because I know that buying art is complicated.
Clara Woods & Betina Genovesi 54:19
I know that if it’s women, it’s hard to do because they want to match the art with the couch, walls, space, and everything. So they like it but don’t know when they sigh. So it isn’t very easy. If it’s a man and they have, like, they can buy. They believe and don’t care. I think after they fight with the wives.
Bill Gasiamis 54:45
They buy it and worry about it later. And then it goes if the husband likes it and the wife doesn’t like it, goes into the garage or in the back of the toilet somewhere. It doesn’t matter.
Clara Woods 54:57
Mostly, I always say and believe that if you buy Clara’s art now, it will be like an investment in the future. I think we have some people who bought just for acquisition. So they believe that Clara will grow and it will increase the price.
Clara Woods & Betina Genovesi 55:15
So we developed a more affordable clothing collection, you know, the limited edition prints; I think it’s also a factor of time because many people that come to our website just saw us in a video, so they don’t know all the stories. So they first need to learn then to be able to.
Bill Gasiamis 55:40
Yes, it’s a slow process; sometimes, it’s a slow burn. So people will become familiar with Clara with you guys with a story, follow it for a little while, and interact several of times.
Clara Woods & Betina Genovesi 55:52
So, we created the rainbow plane course about how to dream big. Since we talk with many people in the most motivational way, we thought, why not use these so that people know about what we did? And because, for us, many things are standard, but who is watching us? It’s not, you know, or they feel how you did that you change our life, you moved your country I want sometimes they want just to do a small thing.
Clara Woods & Betina Genovesi 56:27
Sometimes it’s big. So we said we wanted to help and said, you can do it. And I was terrified because I said I don’t know if this is a good thing I did. And I had my first student in Canada. And she was amazed. She said I changed my life two months after I started, and she also had some mental health problems and chronic diseases.
Clara Woods & Betina Genovesi 56:58
So, with the disability, Clara wants to speak. You are thinking about what? You don’t know. No. Do we want to ask something? Yeah, okay. About his brain. Because now Clara existed in a lot. Can I say, okay, she lived in a lot of the brain with Karen because she has this dystonia and wants to get over our feet and get better?
Clara Woods & Betina Genovesi 57:42
So they said about the brain, and where it’s part of the dystonia that can cause anxiety, it’s all in the same place. And she wants to say a word that sent you the picture. It was here she wanted to show you the part of the brain. Because when you do, you had the stroke in one part of the left side, the right side.
Bill Gasiamis 58:21
Right side near my cerebellum. It was deep in my brain, four centimeters from my ear.
Clara Woods & Betina Genovesi 58:29
But when you had, you said you had one and then another. And then you were okay, for two years before the brain surgery was…
Bill Gasiamis 58:41
It was a tough time. So I had to swim then, so I couldn’t work a lot. I had memory problems. I couldn’t type an email. Sometimes, I forget who visited me. A lot of the time, I felt like I was on another planet in space. So I was all weird and loopy. I had difficulty with energy and a lot of fatigue. I have so, I suffered difficult fatigue, debilitating fatigue. What else did I experience? My left side has numbness, tingling, and burning sensation.
Bill Gasiamis 59:23
My balance is slightly off because my left side doesn’t recognize where it is in the world. So it’s it’s called proprioception. And it’s a problem with the sensory neurons. And there’s a slight problem with the motor neurons, but not so much. So there are a couple of things going on at the same time, and I live with muscle tightness on my left side, so my body balance is always a little bit out of balance, and my muscles need massaging and support like that. And also, my skin feels sensitive. So, if you touch it gently, it hurts. It burns the wind. I can feel the wind impact.
Clara Woods & Betina Genovesi 1:00:17
Yeah, I think it’s also a different place, but since Clara had, you know, she was born with the consequence of the stroke. So then I think it’s also different.
Bill Gasiamis 1:00:36
Show me, yes, the basal ganglia.
Clara Woods & Betina Genovesi 1:00:40
Yeah. This is where dystonia happens. The doctor said it can occur after surgery when people with Clara now have cerebral palsy. He was hopeful that it would be fixed, so it was good, but they never knew with the brain. Okay, you can send it, and now she is working in writing. A brain with a bazooka calm? Yeah. Right. She’s drawing what?
Bill Gasiamis 1:01:22
Uh-huh. Fantastic. Another piece for the collection? Is there going to be another? Is that going to be another art piece?
Clara Woods & Betina Genovesi 1:01:33
Another what?
Bill Gasiamis 1:01:37
Art, is it going to be another?
Clara Woods & Betina Genovesi 1:01:43
Art piece? Yes. Now, she’s back into paint because she’d spent two months not painting because of the surgery. Yeah, she’s creating some things.
Bill Gasiamis 1:02:05
It’s just amazing that you guys listen to how the family works and everything going on. Just generally, the way that you guys approach life that you made. It’s amazing.
Intro 1:02:20
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 many 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.
Intro 1:02:39
But you’ve never had a stroke before; you probably don’t know what questions to ask. If this is you, you may miss out on doing things that could help speed up your recovery if you find yourself in that situation. Stop worrying and head to recoveryafterstroke.com, where you can download a guide to help you. It’s called seven questions to ask your doctor about your stroke.
Intro 1:03:03
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, 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.
Clara Woods & Betina Genovesi 1:03:22
Carlo is now terrible because he’s opened. I don’t know what sweets.
Bill Gasiamis 1:03:30
How are you? This is a podcast. Don’t you guys understand that podcasts are serious? We can’t be interrupting all the time. Carlo, what’s that biscuit?
Carlo Genovesi 1:03:50
These are called…
Clara Woods & Betina Genovesi 1:03:56
It’s, you know, from the Girl Scouts here in America they sell a lot of, and this one someone brought us because both have ADHD.
Carlo Genovesi 1:04:10
We try to have sugar in the house.
Bill Gasiamis 1:04:14
So there’s not enough sugar.
Clara Woods & Betina Genovesi 1:04:16
But everyone brings ice cream so all of them bring ice cream it’s impossible. They don’t get fat; this is what I do, but they don’t. Amore, you can say a little bit for yourself.
Carlo Genovesi 1:04:44
Yes, Clara was kicking me away.
Dealing with ADHD
Clara Woods & Betina Genovesi 1:04:50
What we see is that Carlo is an actual role model for a lot of dads out there. And this is so nice. Because he has ADHD in Italy, you know Europe how things are. So he was extraordinary and new in Europe because of his way and being a little bit without filters. And here, at least, I think it’s much more a place for him, And it’s lovely to see this born of him as a role model for many people, seeing what he’s doing with Clara. That’s nature for him. He has so much more patience than me, like
Bill Gasiamis 1:05:38
Did you think you’re going to become a role model, Carlo?
Carlo Genovesi 1:05:43
Well, I came 30 years earlier to America; I had all the cards to go to prison with my haphazard riding and just, you know, doing things out of the ordinary North American Anglo-Saxon world. It’s a lot more structured, and we ADHDers get into trouble and considerable time and spend many years in prison.
Bill Gasiamis 1:06:14
So, at the moment, you feel like
Carlo Genovesi 1:06:18
I’ve not yet ended up in prison because I tried to conform to society, you know, in Mediterranean countries, people live more on an improvised basis.
Clara Woods & Betina Genovesi 1:06:41
The other day Carlo disappeared because he was helping a friend of ours and you know, he always forgets the phone, it’s like an ADHD thing. So it was midnight. Where’s Carlo? The only thing I was thinking is who will help me with Clara because he has a lot of patience and love and, you know, trying to listen because a lot of times we do not attend because it’s easier to do our way, you know so let’s go because we need to do this and let’s do this, but it’s not Clara’s way. And then this is also this debilitating. She’s worried now about Davi, right?
Carlo Genovesi 1:07:38
A new way to show the sketch she made of herself is to picture herself as an animal, Clara, because we do not say anything. After all, you behave like an animal or not.
Clara Woods & Betina Genovesi 1:07:56
Because it says things to three weeks, we have a giant like real administration family to say, Clara, you are a grown-up. You are almost an adult, and things need to change. Your disability cannot be given excuse. So I’m the bad cop, and follow is the good cop. So she was like, doing not good things for me. So she did me this beautiful. It’s a thing, love, man. I love you for being my mom.
Bill Gasiamis 1:08:42
She also knows how to work her magic to bring you on her side. Yeah. I love it. This is a fantastic story. This is a brilliant thing. I love that you guys dare to move to another part of the planet to see this thing fulfilled and to make this happen and be an example to show people what’s possible.
Bill Gasiamis 1:09:10
It is such an essential part of stroke recovery to encourage people to do their own thing, be themselves, and find a way. Frida Kahlo inspired people 100 years ago with her work, and she was not meant to be doing that. She had everything going against her. She had a disability.
Bill Gasiamis 1:09:34
She was a woman in the worst time in the world, but she is the worst time for that type of combination in the world, you know, one of the worst times but she still found a way to make a massive impact, and I love the fact that you guys are doing it in your way, even if it’s a little bit.
Clara Woods & Betina Genovesi 1:09:56
Carlo, that kind of painting.
Bill Gasiamis 1:09:58
Yeah, please show me
new one.
Bill Gasiamis 1:10:02
Oh, wow, wow, that’s a big one too. I love it. Fantastic Carlo is an incredible display of art.
Clara Woods & Betina Genovesi 1:10:19
God, I want to ask if you’re going to meet her guinea pig called Chocolate
Bill Gasiamis 1:10:25
Yes, of course.
Clara Woods & Betina Genovesi 1:10:28
I went to pig, Allah. Ma. Kira will try it. Twice, King Clara said she asked you before you knew if you agreed.
Bill Gasiamis 1:10:45
You guys are running the show here. Do whatever you like. This is your podcast. No problem.
Clara Woods & Betina Genovesi 1:10:52
You will know I’m so happy. It’s our first podcast Ray will hear, and I’m so glad that we feel.
Bill Gasiamis 1:11:01
Well, I’m
Clara Woods & Betina Genovesi 1:11:03
Clara wants to know what time is in England now.
Bill Gasiamis 1:11:07
Well, I’m in Australia. It is nine o’clock in the morning. In Australia? I do. It’s nine o’clock in the morning. And today it’s Saturday.
Clara Woods & Betina Genovesi 1:11:18
So I want to say it’s not 9 pm? No, it’s 9am am Saturday. So I was great. We have a lot of Australian followers, a lot. So, I want to say hi to everyone.
Bill Gasiamis 1:11:37
I want to say to the Australian followers I want to sound like this podcast episode on YouTube. Leave a comment so we know where you’re from. If you’re listening from any part of the world, please leave a comment. I will ensure that Clara and the team get notified of all the words.
Clara Woods & Betina Genovesi 1:11:58
Today, you are happy to be here. Sometimes, when we are doing life, Clara is very annoyed. No annoying. So she’s like, and I’m just, you know, kicking her under the table like? Yes, more or less. Okay, can I know someone who’s falling? I don’t care. Oh, later, oh.
Bill Gasiamis 1:12:34
Okay, so you’re happy to be here today. I’m so glad that you’re here today. Thank you so much for being here today. I appreciate it. So, are we going to say chocolate?
Clara Woods & Betina Genovesi 1:12:44
Yeah, Carlo, because you know, Carlo is a nature and he loves animals. So I always say I don’t want to because I cannot manage our so and they invite many reasons. Now. We got two guinea pigs. They taste good and say no. And they cannot be in a cage for Carlo. So they stay all the time in our garden. But in the night, they go to the cell. And it’s always an adventure to pick them up and put them in the cell. Because you know, Carlo, the wind Carlo is not here. I’m not doing this because I don’t know how.
Bill Gasiamis 1:13:31
And you have enough jobs already.
Clara Woods & Betina Genovesi 1:13:33
Yeah. so Clara is helping to show where the guinea pig is.
Bill Gasiamis 1:13:51
Fantastic. When I started my stroke recovery and this journey on podcasting, I never expected to pay 260 stroke survivors from around the world who would come on to my podcast. I was utterly blown away and surprised because, before the stroke, I was one of those ordinary people who never had a disability, understood problems, and never had a life.
Bill Gasiamis 1:14:19
My life changed. Everything was going on, as it always did, without any real drama. So now this is a fantastic experience for me. I love the fact that I’m on the podcast. And I’m interviewing you and sharing what you guys are doing. I didn’t know that it was going to come to this. I didn’t realize that that’s what my podcast would create this opportunity to grow awareness and inspire people—so saying, fantastic for me.
Clara Woods & Betina Genovesi 1:14:51
I have like now when we realize everything we did because we mostly start and are not expected.
Bill Gasiamis 1:15:02
There it is, it’s chocolate. Is that chocolate?
Carlo Genovesi 1:15:05
Yes.
Bill Gasiamis 1:15:06
A little bit of dark chocolate. And a little bit of white chocolate. That’s gorgeous. How could you say no to those fantastic, beautiful animals there, Betina?
Clara Woods & Betina Genovesi 1:15:22
When we were in the hospital, like a bad day, we went for Clara. After surgery, one of them died. We died in Iraq who got Yes, yeah, not. And we were, how can we say these two karada? I was saying I cannot tell Carlo because Carlo tells everything. And then my mom and our friend bought a new one. And I was why you did that. So we had we have to again.
Bill Gasiamis 1:15:55
Okay, so there was an opportunity to have one, and now you have to again,
Clara Woods & Betina Genovesi 1:16:00
Mostly, everyone says they need to be true. Because otherwise they get depressed and I’m coming. They are animals. Are they depressed? Like this new one is a sexual
Carlo Genovesi 1:16:12
maniac.
Clara Woods & Betina Genovesi 1:16:13
I’m more than.
Carlo Genovesi 1:16:14
She’s really into that testosterone store now because they are free. And then we organize behind chocolate; it’s ancient. Come on. You’re ridiculous.
Bill Gasiamis 1:16:34
So it’s a sexual maniac. That second one is the first.
Carlo Genovesi 1:16:41
The second one, this new one that we got?
Advice on how to prepare for school
Clara Woods & Betina Genovesi 1:16:46
Clara wants to ask for advice. So she wants to ask for guidance because she will start school again after five months. Five months, from April to now, I don’t know, she’s missing school, we need to be precise. She’s terrified because she cannot walk yet well, and she will need the wheelchair a little more.
Clara Woods & Betina Genovesi 1:17:27
Because she needs to change classes, she needs to change styles. And she’s afraid that she will not be as fast as before. And today we had a meeting with the teacher, but the teacher forgot. So she cried before the meeting, and the teacher didn’t come. So now we must wait until Tuesday to organize the week and see how she will return. So she would like some advice.
Bill Gasiamis 1:18:01
Okay, about what to do between now and then or what to do at school.
Clara Woods & Betina Genovesi 1:18:06
At school.
Bill Gasiamis 1:18:08
Okay.
Carlo Genovesi 1:18:09
Cry when you are in pain, or will you play hard because she’s got the pain here?
Clara Woods & Betina Genovesi 1:18:17
Be quiet. She wants to hear from him.
Bill Gasiamis 1:18:24
I think this is what’s going to be a possibility. Every class, Clara’s class ends five minutes before everybody else. So she can leave the classroom when no children are in the corridor. And she can get to her class, next class on time.
Clara Woods & Betina Genovesi 1:18:43
This is good, we can talk to the teacher.
Carlo Genovesi 1:18:51
Thank you so much. This is a great idea.
Bill Gasiamis 1:18:54
Five minutes is a little bit at the end of the class, and the corridor fills with students. So when she gets to the next classroom, the students can do their thing. And Clara is already there.
Carlo Genovesi 1:19:06
As a kid, I would pack my bag a bit earlier, and the teacher’s punishment would leave me longer.
Bill Gasiamis 1:19:16
When I was a kid, I tried to avoid going to school. But that’s what Clara is going to do. I think maybe it’ll help. I think the teachers would appreciate it.
Clara Woods & Betina Genovesi 1:19:28
We can ask the teacher. They are lovely in her school, and it’s difficult because she’s going to a specialty school with 100 kids with disabilities. So, it’s a lot of specific needs to meet. And they do an excellent job, but sometimes we feel I always tried to say about inclusion. That’s not just saying hey, hi!
Bill Gasiamis 1:20:02
You know, inclusion is a huge word,
Clara Woods & Betina Genovesi 1:20:05
Much more than that. And we are trying to work on that.
Bill Gasiamis 1:20:12
I think a school like that is very much aware of the challenges children face moving from one class to another.
Clara Woods & Betina Genovesi 1:20:22
We will have other questions that we can ask.
Bill Gasiamis 1:20:30
Well, what can we do?
Clara Woods & Betina Genovesi 1:20:32
We can write after.
Bill Gasiamis 1:20:34
We can communicate via email, whatever you like; I will be involved in your social media from now on. Now, I would love to tell you that in six months after you’ve been to New York, I’d love to have you back on the podcast so you can tell me about your New York experience.
Clara Woods & Betina Genovesi 1:20:54
And when you were prototyping, professionalize. The arc? Yeah, I believe you’re so close. Next time, you will not come into the podcast.
Bill Gasiamis 1:21:13
You, it’s New York, will happen. You’re so close. You’re only 4000 kilometers away. You’re so much further. Yeah.
Clara Woods & Betina Genovesi 1:21:22
But in Europe, everything seems closer.
Bill Gasiamis 1:21:25
Yeah. Well, it is. That’s why. So that’s okay. You’ll get there. Thank you so much for reaching out to be on the podcast. I appreciate it. It’s lovely to meet you. It’s beautiful to be a part of your family for an hour. And experience what goes on there. I feel like I am there. And we’re just living our typical day in your house. So thank you.
Carlo Genovesi 1:21:49
Where do you live?
Bill Gasiamis 1:21:50
I live in Melbourne, Australia. It’s only 16,000 kilometers away from where you are, something like that. Come and visit us, Carlo.
Clara Woods & Betina Genovesi 1:22:02
We want.
Carlo Genovesi 1:22:04
There’s a great power wheelchair manufacturer. Magic Mobility is from Melbourne. Go on the beach and do all kinds of altering.
Bill Gasiamis 1:22:17
Yeah, I know the name.
Clara Woods & Betina Genovesi 1:22:19
Clara wants to know, how old are your children?
Bill Gasiamis 1:22:24
My oldest son is 27. And my youngest son is 23.
Clara Woods & Betina Genovesi 1:22:29
How old are you?
Bill Gasiamis 1:22:30
I’m 49. I started early, Carlo. I started early. You know, that crazy kid that didn’t want to go to school. He wanted to have a family.
Clara Woods & Betina Genovesi 1:22:42
How old? Were you when you started? Young?
Bill Gasiamis 1:22:48
My first son was born one month after my 22nd birthday.
Clara Woods & Betina Genovesi 1:22:53
Yeah, like I was 24 with Clara.
Bill Gasiamis 1:22:57
Yeah. So it’s young now. Because nobody gets married now at the age of 22 and has kids. Back then, it was scarce. Some people I knew were getting married young, but not many people were having kids at 21 or 22. So we didn’t plan for that, as you can understand. It just happened. And we went with it. Just like you guys, we just went with it.
Carlo Genovesi 1:23:24
We’re never ready in life, in any case.
Bill Gasiamis 1:23:27
100%. So I wouldn’t change a thing. My sons are now adults, and we interact in such a fantastic way. They become such amazing men, and we have a beautiful relationship with them. It’s just lovely to be 49 and have adult children. It’s just brilliant. I love it. And, look, they are part of why I’m doing what I’m doing. I wanted to set that example.
Bill Gasiamis 1:23:53
But I wanted to be a better dad, you know, I wanted to improve after the stroke. I thought I was going to die. I didn’t want them to remember that this crazy, angry guy who was always working was always tired and exhausted. You know, because I was young, I did way too much. Because we had app goings, we had expenses.
Bill Gasiamis 1:24:17
My wife was at home for a long time because we had two young kids and all the usual problems we all had; I worked three jobs. And I wasn’t doing anything that I was passionate about. And it burnt me out. It made me feel cranky. And I used to take it out on them. I wasn’t a terrible dad, but I was an angry person. So when you’re an angry person, you’re harder to be around.
Bill Gasiamis 1:24:43
Whereas they’ve inspired me to be less angry, more paying attention, more listening, and less judgmental. And you know, the stroke has helped me because that’s why I think it’s the best thing that happened to me because it put me in a position where I was vulnerable. And I knew I had to change my ways because you can’t keep doing things in a way hard, and you can’t be angry for your whole life. You know, it’s not possible.
Clara Woods & Betina Genovesi 1:25:20
Since I started listening to the podcast, I’m like, I know you, I know you. But now you are like the same. I don’t know if someone has already told you. Did you watch the series Succession?
Bill Gasiamis 1:25:36
No.
Clara Woods & Betina Genovesi 1:25:38
You are the same as Kenny. From the picture? Yes.
Bill Gasiamis 1:25:45
Okay. I’ll have a look.
Clara Woods & Betina Genovesi 1:25:51
Not Ken or Barbie.
Bill Gasiamis 1:25:54
Thank you. I’ll take that as a compliment. I’m not a Ken. Not from Barbie. Okay, cool. Ken from Succession. Well, guys, it’s such an absolute pleasure to meet you. Thank you so much for reaching out. I’m going to follow you guys.
I look forward to hearing the updates.
Bill Gasiamis 1:26:14
And if there’s anything I can do from my side of the world. I’ll get the links to your website listed in the show notes. So if anyone listening and watching wants to go there, they can. Look at a piece of art; buy a work of art. Will you guys ship it anywhere on the planet?
Clara Woods & Betina Genovesi 1:26:33
Yes.
Bill Gasiamis 1:26:35
Okay, fantastic. Thank you for being on my podcast.
Clara Woods & Betina Genovesi 1:26:39
And all the links, we share everything and do a lot.
Carlo Genovesi 1:26:46
Bill, I bless inside out.
Bill Gasiamis 1:26:49
Thank you guys, thank you so much. I appreciate you being on the podcast.
Bill Gasiamis 1:26:54
Thank you for joining me on today’s episode. Didn’t I tell you guys that it would be fabulous and that it would be unstructured and not a standard episode of the podcast? It is just a great thing for me to have done this interview and be involved in some small way in raising awareness for the journey that Clara is on to become
Bill Gasiamis 1:27:21
a fantastic representative of the stroke community and to show people what is possible after a stroke. Even though it is challenging, there are lots of great things that can come of it. If you want to join me on the show to share your stroke journey, what you’ve overcome, and what you’ve achieved, please reach out; I’d love to have you on the podcast.
Bill Gasiamis 1:27:45
To learn more about my guests, including links to their social media and other pages, and download a full interview transcript. Please go to recoveryafterstroke.com/episodes. If you would like to support this podcast, the best way to do it is to leave a five-star review that will make the podcast more popular and fall in the hands or the eyes and ears of other people who need podcasts like this. If you do that on iTunes and Spotify, that will be amazing.
Bill Gasiamis 1:28:18
Suppose you’re watching on YouTube; comment below the video. Let me know what you think of the episode. Let me know about your experience. I try to respond to all comments on YouTube. And YouTube loves it when people interact with the podcast. So that’d be fantastic. To get notifications of future episodes, subscribe to the show on the platform of your choice.
Bill Gasiamis 1:28:41
I appreciate you for being here. Thank you for listening. And I hope to see you on your episode and I look forward to presenting and delivering the next episode for you as well. I am filled with joy. I don’t even know what I’m talking about. I’m filled with joy that the podcast has gotten to this stage, and now we are making a massive difference and showing people what is possible after a stroke. Thank you for being here truly. Thank you.
Intro 1:29:14
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 experience. We do not necessarily share the same opinion nor recommend any treatment protocol discussed.
Intro 1:29:31
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. It is primarily based on the personal experience of Bill Gasiamis. The content is intended to complement your medical treatment and support healing.
Intro 1:29:48
It is not intended to substitute professional medical advice and should not be relied on as health advice. The information is general and may not suit your injuries, circumstances, or health objectives. We 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 1:30:09
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be. Call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:30:33
Medical information changes constantly. At the same time, we aim to provide current quality information in our content. We do not offer any guarantees and assume no legal liability or responsibility for the content’s accuracy, currency, or completeness. If you rely on any information within our content, you do so solely at your own risk. We are careful with our links; 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 Life After Perinatal Stroke | Clara Woods & Betina Genovesi appeared first on Recovery After Stroke.
1 hr 31 min
August 21, 2023 The Worst Thing That Happened To Me | Annika Luke
Annika was 44 when an almost two-week unusual headache was finally diagnosed as an ischemic stroke. Annika describes the stroke as being the worst thing that happened to her.
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Highlights:
01:41 Introduction
02:13 The initial symptoms and series of misdiagnoses
12:43 The stress of not getting proper treatment
18:17 Requiring a stent to prevent another stroke
29:55 Getting back to work after the stroke
33:36 Parenting after getting home from the hospital
42:30 Non-invasive brain stimulation and mirror therapy
49:37 Accepting the permanent deficits
1:04:38 Lessons from the stroke
Transcript:
Annika Luke 0:00
I was in occupational therapy thinking everything was fine, and she pulled up a big monitor it was just like a Where’s Waldo type thing with she had pictures of cows and hearts and churches and bells. And she said I want you to hit all the bells.
Annika Luke 0:22
And so, oh, okay, yeah, that’s fine. And I did it and I started doing it. And then I broke down in tears. That was my realization, like, oh my gosh, something is wrong with me. I couldn’t do it. I could see how easy it was, but I couldn’t do it.
Intro 0:48
This is the Recovery after Stroke podcast. With Bill Gaisamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:00
Hello, and welcome to the Recovery after Stroke podcast. If you are a stroke survivor with a story to share about your stroke experience, now is the perfect time to 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 is be a stroke survivor who wants to share your story in the hope that it will help somebody else who is going through something similar.
Bill Gasiamis 1:24
If you are a researcher who wants to share the findings of a recent study, or you are looking to recruit people into studies, you may also wish to reach out and be a guest on my show. If you have a commercial product that you would like to promote, there is a path for you to join me on a sponsored episode of the show.
Introduction – Annika Luke

Bill Gasiamis 1:41
Just go to recoveryafterstroke.com/contact, and fill out the form explaining briefly which category you belong to. And I will respond with more details about how we can connect via Zoom. In today’s episode, I am joined by Annika Luke who experienced an ischemic stroke at age 44 That she describes as being the worst thing that happened to her. Annika Luke, welcome to the podcast.
Annika Luke 2:06
Thanks. Thanks so much for having me.
Bill Gasiamis 2:09
My pleasure. Tell me a little bit about what happened to you.
The initial stroke symptoms and series of misdiagnoses
Annika Luke 2:13
Oh boy, I just jumped right into it. So I guess about a year ago, June 14, 2022. I was exercising down in my basement, as I pretty much do almost every single morning. And it was not an intense workout. I wasn’t doing anything crazy. I was doing a hit workout from Apple.
Annika Luke 2:36
And I don’t even remember exactly what I was doing something like jumping jacks or lunges or something. And suddenly the room sort of spun a little bit. And then I got a headache. So I thought okay, this is weird, but I’ve gotten migraines before.
Annika Luke 2:53
So maybe this is just a migraine, I stopped while I tried to keep going for exercising. But I thought I should probably just chill because the room calmed down. It was just a headache at that point.
Annika Luke 3:05
So I went upstairs and I took some medicine like I normally do and just continued on my day still a headache, but you know, sometimes you just have a headache. So that day was just as it was with a headache. And then the next day came still a headache. So I just again kept going and texted my boss saying, Hey, I’m just gonna be working from home, I got this bad headache.
Annika Luke 3:33
And I’m gonna say it was probably the next day or the day after that the headache was still there. And so I said, you know, this is kind of unusual, I’ll go to urgent care. So I went to our local urgent care center. And I said, Hey, I’ve got a migraine. I’ve had a migraine for about two days now.
Annika Luke 3:58
This is unusual for me. Usually, they start to go down in intensity. I’m not feeling that I’m still feeling really bad. And she said, Well, it’s probably a cluster headache. Let me give you some sumatriptan and maybe you’ll start to feel better. And so I did, I took that sumatriptan and made the headache worse.
Annika Luke 4:20
So then the next day I called, still had a headache. I called back to urgent care and said hey, you know I’ve got this headache. And she said well, why don’t you go ahead and go to the ER they have a migraine cocktail, and they can get you there. So okay, so I you know, at this point, the headache was so bad I was just vomiting and it was horrible.
Annika Luke 4:45
And I went to the ER. They gave me the migraine cocktail. It did make it feel better, but it still wasn’t anything. I still had a headache. And you know, I told them. I said, my hand feels funny. My left hand feels like it’s numb or disassociated from my body.
Annika Luke 5:08
And they were just like pass that off and said, Okay, well, you can go home. And so I went home. And I want to say it was three days later was still a headache. I got in to see a neurologist. So, I went to see her and told her all the symptoms, and I said, you know, there’s something kind of weird too, is that I feel like I hear breathing.
Annika Luke 5:35
It’s like somebody’s breathing in my ear. And I said, you know, is it normal? And she’s kind of just shrugged her shoulders. And I said, well, Am I hallucinating? Because I don’t like mouth noises. So I thought maybe that was just my way of being even more annoyed.
Bill Gasiamis 5:59
Are you talking about chewing mouth noises?
Annika Luke 6:01
Yes, I do not like mouth noises breathing, or chewing close to my ear. Yeah, so I said, you know, she kind of just shrugged that off and thought, nothing much of it. And she looked at me after she examined me she did like a stroke assessment and said everything there was normal.
Annika Luke 6:25
And I think you just have a long migraine, and you’re gonna continue to have it for maybe 10 more days. And then she just sent me on my way with this new drug that they have for migraines. So she gave me quite a few sample packs. And I said, you know, I’m headed to Colorado in a few days.
Annika Luke 6:49
And I’d like to be able to go and she said, Well, here’s enough sample packs, take one of these just as prophylactically. So that while you’re there, you take one every other day. So she gave me enough samples for that. I went on my way. And then I’m gonna say it was probably a day or two after that, where the headache was still there still intense.
Annika Luke 7:20
And then I was trying to go to bed. It was the 22nd of June. So I started the headache on June 14. And then on the 22nd of June, I was going to bed, I couldn’t sleep, and my head hurt so badly that I ended up sleeping on ice packs. Just I got a bunch of ice packs, and I put them on a pillow and tried to sleep on them.
Annika Luke 7:45
And I still had a hard time sleeping. And I went downstairs and I wrote my family a note because you know, I have two kids. And the husband said, hey, look, I’m not sleeping, well just know that I haven’t slept well. And you know, try to be quiet in the morning. Because I thought they’re gonna get up, make a bunch of noise, and think, Hey, where’s mom? Why isn’t she making our lunches or whatever it is that I normally do?
Annika Luke 8:09
And so I wrote a note. And then they kind of got off on their own. They went to school or camp at that time. And I kept sleeping. And then my husband came in and checked on me and he was concerned, definitely was concerned. But it was nothing. I wasn’t acting that unusual. That morning, I did get up and I let the dogs out. I walked outside.
Annika Luke 8:35
And you know, I remember thinking, go to the bathroom dogs because I want to go back in I had to like, sit down, I felt nauseous and sick and bad. And so I did that quickly. went back upstairs and went back to my bed. And so anyway, my husband noticed after he took the kids to school, that I was acting a little odd, but nothing that couldn’t be explained by lack of sleep and having a headache for that long.
Annika Luke 9:07
You know, it’s just eventually getting to you. So that was kind of where we were. And he called the neurologist and said, You know, I think she’s getting worse. Is there something more we should do? So she called in a prescription for prednisone. Then he went back to pick that up. And then she said, I know you’re leaving soon for Colorado or he said that he said we’re leaving tomorrow at this point.
Annika Luke 9:43
How are we going to leave? Is that okay? That she still has this bad of a headache? And she said yeah, you know since you’re traveling maybe we should get you a CT scan. So you know we’re leaving. I can’t remember When it was, but it was very soon after he had been talking to her.
Annika Luke 10:03
And so he called her back and said, You didn’t make it for today like she prescribed the CT scan. But we couldn’t get in today because she needed to write it for the stat. So anyway, he called her back and said, Yeah, I am concerned. And I think that she needs to get in to see that do the scan today.
Annika Luke 10:28
And so she did that. And then he drove me there. As he was getting me ready for the CT scan, he noticed, like things were just really not right, that I seemed to be uncoordinated. I was like, kind of walking into walls on the left side of my body. And so he was concerned.
Annika Luke 10:58
So anyway, he drove me to the CT scan place, and he got me in there. And he said, Hey, I think there’s something wrong, I think she might be having a stroke. And they did a couple of little stroke tests, you know, had me smile and maybe put my hands up. And they said, Yeah, I do think it is a stroke, and they did a scan, and they confirmed it. So then, after they confirmed it, they’re like, Okay, we need to get her to the ER now.
Annika Luke 11:30
And we were close to an ER, closer than it would have been for an ambulance to come rather than my husband to take me. So my husband ended up driving me to the ER, they called ahead and said, Hey, we have this patient coming. And that is when they confirmed the stroke. And they started doing all the tests that needed to be done. And they said It’s really bad. It’s not good.
Annika Luke 12:03
And I can’t remember what hospital we were in, I guess it was the ER where they, they thought that my brain was swelling to a point where it was really dangerous, and they were going to have to do a craniotomy. So they medivac me to a different hospital. And I was in the ICU there for a few days. And then I was still in the hospital for another week or so about a week total.
Bill Gasiamis 12:37
We’ve been going for around 10 minutes. And
Annika Luke 12:40
That’s a long story. Sorry.
The stress of not getting proper treatment

Bill Gasiamis 12:43
And the tension, I could feel the tension building and building and building and building and I’m thinking, okay, at five minutes, I thought they’re gonna get help, she’s gonna work it out. That was a stretch. At seven minutes. I thought, no, no, they’re gonna work it out, it’s gonna be a stroke, they’re gonna work it out.
Bill Gasiamis 12:59
And that 10 minutes, and I’m thinking you’re one of the people who’s gone out of their way to make sure that you got help, which is usually the opposite is happening in the stories that I hear people say it’s nothing, I’m going to avoid it.
Bill Gasiamis 13:21
I’m gonna go to work, I have this trip to go they do everything except go and get help, you’ve done the exact opposite. And it’s still taken around 10 days or two weeks to get a diagnosis, which is amazing that you are still able to keep going after that amount of time and then still turn up to the hospital in a condition that was reasonable enough for you to even though you need help to be on your feet and to make your way to a hospital. That’s pretty amazing. So yeah, they’ve discovered a stroke, what kind of stroke was it?
Annika Luke 14:06
It was an ischemic stroke, due to a carotid artery artery dissection. So we think that happened during the exercise. To me, I’m not 100% sold on that is the cause of it, but it must be there’s no other thing that I mean, the only other thing is that I was lifting 15-pound weights, doing overhead presses, maybe the day before. So maybe I weaken the artery at that point. But yeah, it was surprising to me because I wasn’t doing CrossFit or you know, crazy amounts of exercise. I was rather tame and what I was doing.
Bill Gasiamis 14:52
These pesky carotid arteries sometimes, you know, just don’t behave the way they’re meant to and The tears do occasionally hear about it’s very, very common. But some people you hear that they had a massive collision, in a motor vehicle. And that caused a big, like a whiplash-type injury. And then that caused that. And then I’ve heard people and occur that have just sneezed and caused a stroke.
Annika Luke 15:25
So leave me walking around feeling very happy about like, how is it that I’m not going to do it again, you know, and I keep asking, I’ve gotten to so many specialists, I’m talking to right now because I’m going to get a stent in my carotid artery coming up here. Because since the stroke, I’ve heard my heartbeat every single time. It beats beats, it sounds like a squeak. And so talking to an interventional radiologist about, you know, that they, they focus on these type of things, and like, how did it happen? And they don’t know. They just don’t know.
Bill Gasiamis 16:07
Yeah. You know, the thing you said about listening, being able to hear your heartbeat. Is that disconcerting?
Annika Luke 16:16
Yes, it’s horrible. It’s not like a tongue. It’s a squeak squeak. Every single time, my heartbeat, I can’t sleep. So what I do is I wear an earbud in this ear, so that I can sleep is just playing pink noise or brown noise all night long. And if it falls out, it’ll wake me up.
Bill Gasiamis 16:40
Right. Okay. Now, I know there are actual hearing aids, specifically designed for people who have tinnitus, and maybe four similar conditions that you’re experiencing right now that cancel out noises for some people in some conditions. So they do stay in a bit better than an ear but headphones, for example. Yes.
Bill Gasiamis 17:07
Now, the other thing that’s interesting about what you said is one of my coaching clients reached out to me and said, Well, I’ve been speaking to her for a couple of years about all her stroke-related experiences. And just recently, she said, I don’t know what it is, but I hear voices.
Bill Gasiamis 17:26
I thought, oh, what kind of voices are good or bad? When she says, No, they’re not those types of voices. She just said, she hears like, it’s like background talking. And she might be in her room on her own. And she can hear the background talking. And I thought, oh, that sounds a bit weird. I wonder if you need to go and see somebody about that. Anyhow, I reached out to the stroke survivors who follow my recovery after stroke page on Instagram.
Bill Gasiamis 17:54
And I asked the question, and because I didn’t want to freak people out. I asked it like this. I said this might sound like a strange question. But did you start hearing sounds of voices in your head after the stroke that you didn’t hear before the stroke? And you won’t believe the number of people who responded and said yes.
Requiring a stent to prevent another stroke
Annika Luke 18:17
Well, that’s weird. I have never heard of that. It doesn’t sound like a murmur or anything. It sounds like a squeak. But that’s because however, my carotid artery healed, and I’ve seen images of it, it’s fascinating to me because they’ve done an angiogram. It healed very, very narrow. So it’s more narrow, I think than it was before.
Annika Luke 18:41
And so that’s why just that blood getting through there is a problem. And that’s another reason why I’m gonna get the stent is that you know, as things build up in your blood, because of that narrowness, I mean, it’s like 90%, closed off. That could lead to problems down the road. So the stent will help later on, for potentially not having a stroke.
Bill Gasiamis 19:10
Yeah. So it has healed and because of the way that it’s healed, it has taken up more space inside the blood vessel. I think so. Yeah. And therefore, it’s got a 90% reduced capacity. Yes, yes. Okay. All right. And therefore, you’re probably being asked to take a blood thinner, or of some sort. All day.
Annika Luke 19:37
Yep. I’m not all day. Every day. Yeah. And, you know, if I get a stent, then I’ll have to do two blood thinners. I’ll do the aspirin and Plavix.
Bill Gasiamis 19:47
Yes. Okay. And how old were you at the time?
Annika Luke 19:52
I was 44 at the time, so I’m, I’m now 45.
Bill Gasiamis 19:58
Have you ever heard of anybody Having had a stroke before then did you know anybody?
Annika Luke 20:04
No, not. And, when it happened, even when they said it was a stroke, I didn’t believe them. And I would say I was delusional about it for, I want to say, two to three weeks, like even in the hospital. And while I’m being medivac, I just thought, why are they blowing this out of proportion?
Annika Luke 20:28
Like, I’m okay. I mean, I went into the ER, and I said, you know, I react to iodine contrast. But we’re doing scans, but you can give me gadolinium. And so obviously, I had my wits about me, I was able to walk. So I thought, what, they’re overblowing this, this is not a big deal. I will come back from this.
Bill Gasiamis 20:55
Yeah. And that’s a great thing to think, especially during a potentially difficult, scary time for a lot of other people. But I’m curious. You’re going through that? What are you? Like, you know, how do you comprehend though you are in hospital, you are unwell? I know you don’t feel unwell, or you don’t sort of see yourself as being unwell. I was like that, for the first blade that I had, I experienced a similar kind of what’s the word? Not delusion, but a false sense of security. And people were coming to visit me.
Bill Gasiamis 21:42
And I was walking around, and I looked fine. But I had a blood clot in my head. The doctors and nurses were trying to emphasize the point, you need to sit down, you need to rest you need to settle. You need to not be walking around. You need to stay in our ward. Because I was always done at the hospital cafe, catching up with people who were visiting and all that kind of stuff. But your husband didn’t, he wasn’t so he wouldn’t have been so nonchalant about it.
Annika Luke 22:21
Like, you know, no, he was he, he was worried. I mean, he was talking to doctors. And they were telling him how bad it was. And, and he was kind of beside himself, he called my neighbor, who is a doctor, and said, you know, this is happening.
And my neighbor, a super, super nice guy. He actually came to the hospital to visit not to visit, but more to like, help my husband because he wanted to talk to the doctors himself, and then give it in normal speak to my husband so that he could sort of help interpret that, you know, English to English.
Bill Gasiamis 23:03
Yeah. Okay. And so the kids, how old were they?
Annika Luke 23:10
My son is now 15. He was 14 at the time. And my daughter is 11. But she was 10.
Bill Gasiamis 23:20
Okay, so my kids were the same age. How did you guys manage that part of the process? I don’t remember dealing with that part of the process too much. Because I wasn’t really in a good state to be doing that type of thing, although I was probably trying to allay their concerns. And just don’t worry, I’ve got a bit of a just kind of play it down. How did you guys manage that?
Annika Luke 23:43
Sure. So I remember my husband talking to me about this when we were in the hospital. But basically, we were going to go to Colorado. And we were going to go with some really good family friends. And they have two kids. And we decided that the kids would go to Colorado, with the family friends to you know, they didn’t need to be there. And that was, you know, baby nervous for making them nervous. So we just thought, Alright, let’s go ahead, let them enjoy their vacation.
Annika Luke 24:17
And I being as delusional as I was that I’ll meet them there they’ll go. And then we’ll go to we’ll just go a couple of days later after all this blows over. And even while I was in the hospital, I was saying, all right, where are we going to Colorado? And my husband was pretty, pretty blatant about Nope, we’re not going to Colorado and I said, But why not? I’m fine. And he said because it’s not here.
Annika Luke 24:47
This is where you need to be like they have healthcare in Colorado. It would be fine. So I thought I was gonna go and even after he said, No, I thought well, we can just do arrive there, maybe you don’t want me flying. Because, you know, I know that that’s a potential problem. And even while I was in the hospital, I bought compression socks, thinking that I was gonna go to Colorado and have them delivered to my house.
Bill Gasiamis 25:16
Wow, that’s so cool. I like it. It’s not so bad that you’re delusional, that kind of helps the situation. I felt like my being a little bit disassociated from the seriousness of the situation made it easier for me. When I was in the hospital. It didn’t help the people that were visiting me, my family. My parents didn’t help any of them with the situation. But it certainly did help. It’s an it did help me to be more. More, more calm. I suppose the word is? Yeah.
Annika Luke 25:53
Yeah, I would say calm. And that’s true. I was, I was pretty calm and chill about the whole thing. Yeah, I mean, this is not my first go-around with health problems. So I just thought, it’s just a little blip. You know, everybody has a little blip and keeps going.
Bill Gasiamis 26:11
Yeah. So at some point, you went through the whole hospital process, and you were sent home. Were you when you went home? Did you go home with any deficits? What did the stroke do to you?
Annika Luke 26:25
Yeah, so I went home. Not, like I said, about a week after. And so they did outpatient therapy for me. Even though my husband wanted them to do inpatient therapy. I think outpatient was the right way to go.
Intro 26:41
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, 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 27:11
If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery. Head to the website now, recoveryafterstroke.com, and download the guide. It’s free.
Annika Luke 27:44
I did outpatient therapy, both occupational speech and physical therapy. So I did all of that. And I would say it was actually that when I broke my delusion. The delusion was broken. Because I was in occupational therapy thinking everything’s fine, everything’s fine. And she pulled up a big monitor. And that was just like a Where’s Waldo type thing with pictures of cows and hearts and churches and bells.
Annika Luke 28:24
And she said I want you to hit all the bells. And so Okay, yeah, that’s fine. And I did it. And I started doing it. And then I broke down in tears. I just that was my realization, like, oh, my gosh, something is wrong with me. I couldn’t do it. I could see how easy it was. But I couldn’t do it. And you know, I remember thinking, I’ve never been the smartest person in the room, but I held my own. I was capable. And now all of a sudden I can’t find the bells. So that was a tough blow for me.
Bill Gasiamis 29:08
Right? That was the moment that you realized there was something wrong with your head. What specifically was the thing that you realize, for me, I remember introducing myself into a course that I went and set in about three or four months after my second bleed. And I was cognitively affected. And I remember my biggest concern was that I didn’t know if I was going to get my brain back or to the way that it was when I took it for granted, but I didn’t know how to brain and I just went about my business. What was your specific concern?
Annika Luke getting back to work after the stroke
Annika Luke 29:55
Yeah, getting my brain back and being able to do all The things that I used to do and wanted to do. And I even tried working shortly after that, because I worked from home. And I struggled.
Annika Luke 30:15
I couldn’t do something simple. And then I just took a break and said, Okay, hang on. Let’s see what happens. And just let it chill. I tried too soon. I want to say I was out of the hospital for a week. And I was trying to go back to work, and everything’s fine. Nothing to see here.
Bill Gasiamis 30:38
What kind of work?
Annika Luke 30:40
I’m a web developer. So I work for a company doing all their websites.
Bill Gasiamis 30:45
That’s intense.
Annika Luke 30:48
It’s just a lot of thinking.
Bill Gasiamis 30:49
Focus, concentrate, and monitor time.
Annika Luke 30:56
Yeah. And my typing wasn’t great. At first, like, I could type. But it was my left hand that was a problem. And anytime I went to hit the A button, I would hit the Caps Lock and everything after I’d be shouting.
Bill Gasiamis 31:14
That’s exactly my situation still.
Annika Luke 31:18
It’s frustrating. It’s like, No, I think I’ve overcome that. Now. I don’t remember it happening recently. I think I can type okay, now.
Bill Gasiamis 31:27
Yeah, that’s still my situation, because I’ve got numbness in my left hand. So my hand doesn’t know where it is on the keyboard. And thank God for autocorrecting for me, because I just right-click, and then AutoCorrect. Because if I had to go back and stop all the time to spell correctly, it would be a lot longer process to do an email or type of paragraph or whatever.
Bill Gasiamis 31:58
So I just allow myself to type the whole thing, even though it’s wrong. And just autocorrect so that it’s quicker. Otherwise, if I had to look down at the keyboard all the time, it would just be too annoying. You’re a web developer. Does that mean you were coding?
Annika Luke 32:18
Yeah, I was coding. And just doing like, front-end stuff. Yeah.
Bill Gasiamis 32:26
And coding is a language is it not?
Annika Luke 32:33
I do less coding. Now more management of the websites, I mean, I can still get in there and do the code. And I do from time to time. But that’s less intense. It’s when we’re building the sites that you do a lot of coding. And then as the sites become more self-sufficient, for lack of a better word.
Annika Luke 32:56
Yeah, there’s more management and seeing, you know, what products are up there. Let’s change this. Let’s change the description. Let’s make this one out of stock, that type of thing. So it was more just making it look different.
Bill Gasiamis 33:14
So you attempted to go back to work immediately after you went home from the hospital? That was about a week later. The kids? Are they still in Colorado at that time?
Annika Luke 33:25
No, they came home. And then I was just working from home.
Parenting after getting home from the hospital

Bill Gasiamis 33:36
How did you handle the kid’s situation? Because they would have thought a stroke was not a big deal. We left she was in hospital, we came home, she’s back? How did you manage that whole thing with the kids because teenagers are a pain in the butt? Under normal circumstances, when you’ve had a stroke, it’s even harder for me it was even harder to cope with teenagers. How did you transition? When they came back? Was it difficult? Did you have to change the way you went about things?
Annika Luke 34:08
I don’t think I did so much. No, I mean, I feel like we weren’t great about explaining what was going on. And because I seemed to be healing. Okay, we just sort of kept going. And I did have a hard time with times. Like, especially if somebody told me you know, 445 or quarter toe or the quarters, those drove me crazy and that I would have to leave 45 minutes before that, or 30 minutes before that that time calculation was hard for me. Anything with those 15-minute intervals just really got to me. So they kind of had to help with that.
Annika Luke 34:59
I’m They knew obviously that things were wrong, but feel like we could have done a better job explaining to them. And I think we did. My husband was wonderful, like, beyond wonderful. My sister was staying with us for a little while too. So she helped out quite a bit. With just like picking kids up from camp or getting dinner ready. And I also had a great group of friends that organized meals. For us I want to say we had meals for two months afterward, just so I didn’t have to do any of that, which was great. That’s a big relief.
Bill Gasiamis 35:42
That’s
Annika Luke 35:43
one of my pet peeves. I hate making dinner.
Bill Gasiamis 35:49
Don’t think you’re gonna lose friends by announcing that most people are probably going on with you, Annika, I hate me either, as well. I’m one of those people, I’m home earlier than everybody. So I’m home from 330 to four o’clock in the evening. Nobody gets home before me. And I thought that was an advantage when I was choosing careers and creating a work, my own business, and all that kind of stuff.
Bill Gasiamis 36:17
It’s not an advantage. Because I get I get to work at 730. And then my day doesn’t stop until after 630 when everyone comes home. And as I get older, I’m starting to resent it more. I’m starting to resent my decision to be the guy who’s at home who has to prepare everything and make dinner because there’s no point doing it when my wife gets home at 630, and then starting the dinner preparations because I’ll never end that will still be going at nine. So
Annika Luke 36:50
Yeah, and they want to eat dinner every night. It’s bizarre. Again,
Bill Gasiamis 36:59
Oh my God, these kids. It’s ridiculous husbands and wives and oh, man, it’s unnecessary. And it is I know a big issue with people who have stroke and try to then explain that to the family. Cause I appeared normal, the way I’d always appeared. And then trying to get through a task work, dinner was really hard. But it became important to me because I would be at home doing nothing all day. And then making sure that I had the energy to go out, pick up some of the ingredients, and then make dinner.
Bill Gasiamis 37:32
So at least we ate together when they were when they were still eating dinner at home with us. And it was a good thing to have to do as an I’m not sure if the words as rehabilitation or as to have something to do because I had a lot of downtime in almost three years that I went through the process before my brain surgery, I had a lot of downtimes, so I needed to occupy my time with something. But it was a lot more of a chore because it was also around the same time that I was really tired. My day was coming to an end. And fatigue was kicking in. It was a real challenge.
Annika Luke 38:18
Yeah, I think that was a challenge for me at the beginning. But I wanted to prove that I could do it. So you know, when the kids went back to school, I made it a point to get up with my son. He goes to school at 7 a.m. His school starts at 715 or something. And I made a point to get up and see him off. Because and make lunches during that time. Because I felt like that was what I did. You know, I was a mom.
Annika Luke 38:55
And that’s what I wanted to do. I wanted to make sure that I kept that up. I didn’t want the stroke to make it come to an end I was so tired. So, so tired. I’ve never been as tired as I was after my stroke, and you know, I’ve been pregnant, and that is tiring. But this was a whole other level. But I did try to keep that up and keep the routine in.
Bill Gasiamis 39:24
Yeah. So even to me, you seem pretty calm, and mild-mannered. It’s been about a year. You seem to have come a long way. I suspect though, that there’s a little more still going on under the surface. Did it change the way you think about life? How did it impact you? On a personal level, on an emotional level?
Annika Luke 39:53
No, impacted me. So I would say you know as far as like, speech, occupational Um, physical, all that stuff came relatively easy. Like I had to have a walker for a little bit. But, in the physical therapy, I was talking to her more about what I can not do, like hurt my carotid artery again, not, how I get back to walking because I was able to walk.
Annika Luke 40:25
I carried the walker around just as, lifting it, because I didn’t want to fall down and not have something to fall on. But I didn’t need it to walk balance. So yeah, all of that came relatively easy. And then for a long time, as we mentioned before, I was tired. That was my biggest problem. And just being around people socially, was hard and draining.
Annika Luke 40:54
So that was difficult. And then I would say October was when really, everything just crumbled. October was, it’s normal to have this apparently, but where my stroke hit, it’s in my parietal lobe. And the specific part of it was not in my Thalamus, but it did hit that somatosensory cortex, which does impact how you feel things. And because my body can’t feel correctly, it’s just sending the pain signal. So I have pain down the left side of my body, the entire left side of my body is tingly and feels as though it’s been burned.
Bill Gasiamis 41:48
That’s how I describe it. Yeah,
Annika Luke 41:51
It’s and that, to me was crazy, because I thought things were going well. And you know, little numbness, not a big deal. But in October, when this started creeping in, that was a tragedy, I couldn’t imagine that I was going to have this pain for my entire life.
Annika Luke 42:12
And at that point, I put my foot on the gas, like, Okay, we’re going to fix this, we’re going to do therapy, and how are we not going to overcome this, of course, we can overcome this, everything I’ve read tells me that, you know, the brain is this amazing thing, and you can grow it at any time, you can change it.
Non-invasive brain stimulation and mirror therapy
Annika Luke 42:30
And there’s Neuroplasticity. And I thought, Okay, I’ll fix it. So I did a lot of research. And I’ve tried a lot of different things to overcome this pain. So I tried something called non-invasive brain stimulation, which is trying to hit your motor cortex in a way that makes the pain feel better. It’s worked with people with fibromyalgia. And so I tried that. And I did that every day. I did it paired with mirror therapy because I wanted to try to train the left side of my body to feel the way the right side of my body does.
Annika Luke 43:21
So I set up this thing in my basement, where I had a mirror set up, and then I put my hand in, so that they looked like it was a mirror image of it, and did that every morning for about 20 minutes every day. And I would wear the device on my head while I exercised because this is the thing like I did go to Johns Hopkins and I said, Hey, I want to be involved in your nibs program, your non-invasive brain stimulation program. And they said, No, you don’t have any deficits that we can fix with this.
Annika Luke 44:01
And I thought that was insane. I have a deficit. This is a big problem. It hurts. And they just said no. So I took matters into my own hands, I got, my own tDCS unit, and I found out where my M one motor cortex spots are measured in my head, and put them into a place where I thought would be where they needed to be. And so I did that while I was exercising. And then I did it while I was doing mirror therapy. I would say I wore it for about 60 minutes every day.
Bill Gasiamis 44:41
What did you notice? Nothing. I was hoping you weren’t gonna say that. But I was expecting it.
Annika Luke 44:48
I know. I know. I still am hoping that that’s not the case. But yeah, I did it for probably three months. They’re about. And then I went on vacation where I couldn’t do it. And I didn’t notice any difference. And I thought, no if I’m doing it all this time, and I haven’t noticed any improvement, I thought maybe I would notice that when I stopped, that more pain would come, but I didn’t.
Bill Gasiamis 45:20
The cerebellum and the motor cortex are probably in, they are kind of near each other in some parts of the brain. And I imagined that when they operated on my head to remove the faulty blood vessel, they may have gone in via the motor cortex, or they were near it, or they interrupted, or they did something to it because when I woke up from surgery, I had exactly what you described on the left side, tingling, numbness, burning, all at the same time.
Bill Gasiamis 45:49
And that meant that I couldn’t walk because my leg didn’t know where it was in the world. And it wasn’t sending feedback from the floor to my head to tell my head that it was on the ground. And therefore my work properly and all that stuff. So the rehabilitation has worked well. And I’ve got movement back, back all that stuff. But the thing I experience is, that the left side gets tenser and tighter because it’s overcompensating all the time to make sure that I stay upright. After all, it does feel completely different from the right side.
Bill Gasiamis 46:29
And, and then that makes the muscles tense, and then that makes my balance, go off. And then that has a cascading effect of things that interfere with the way that I feel stability. So the solution to that is to get a massage, and try and loosen, loosen all the tension from the left side and then try and balance it with the right side. And if somebody if I go to a massage, and you know, you get these fluffy, gentle massages where they barely, barely touching, they’re killing me.
Bill Gasiamis 47:11
That is so hurtful, so painful, that I need to go, I book in for the deepest, hardest, whatever you want to call it version of a message that I can get because then that doesn’t hurt as much. What that does is relieve the pain of the muscles and creates relief instead of causing sensory pain and sensory burning, the right type of response. And I remember going into physical therapy without teaching me how to walk again. And they wanted to retrain, they said, my, my left side so that it’s not interpreting soft touch as burning as difficult, etc.
Bill Gasiamis 47:58
So the way they would do that is that we’d get a rough tell that’s come say, out of the washing machine without fabric softener. And then they would just rub that up and down my leg and my arm for 30 minutes to desensitize supposedly my left side so that it doesn’t say that it’s not so that they’re reprogramming this sensation that you and I are feeling into.
Bill Gasiamis 48:32
We’ll call it normal. I don’t know what, you know, something that is less painful. No, not at all. And it was so frustrating because I would have to go there and say to the guys, this is not working. I did this for about 10 or 11 sessions or something. And I would just sit there and just be completely irritated. You know, on my left side, I would just annoy the heck out of me and make it painful the whole time.
Bill Gasiamis 49:01
And I would get zero results. And then recently, so for me, I went through all of that in 2014 and recently my friend helped me through my because he’s a radiographer who helped me through my recovery. My MRIs or my scans through the hospital that he was working at, at the time. His daughter who was 17 had a bleed in the brain almost in the same spot as me and she has the same deficits now on the left side. And I was talking to my friend who’s very well medically aware because he’s a radiographer and has been a radiographer for his whole professional life.
Accepting the permanent deficits from the stroke

Bill Gasiamis 49:37
And he said to me that the doctors told his daughter that we’re going to retrain the brain so that it stops thinking that sensitive touch is bad etc. And they were just telling her this routine that they told me about how I was going to get my sensation back on my left side. And I just had to break the news to him, I said to Chris, I’m not sure that you’re gonna get a result.
Bill Gasiamis 50:11
And that you guys need to keep pushing that because I have not met anybody who has had the deficits that we’ve got now his daughter and I and you that we’re talking about, that has been able to get back the normal feeling on the left side or the right side. It just hasn’t happened, it doesn’t happen. It looks like it sounds like and I don’t want to be the bearer of bad news sounds like that. It’s the one thing that’s permanent is the way that my left side is always going to feel.
Annika Luke 50:43
And I’m trying not to believe that though. I still feel like I can get better.
Bill Gasiamis 50:54
You can I agree with you, you can improve. And one of the things you also can improve with is the way that you experience your left side, it doesn’t have to make you down as much as it does. And that’s where I’ve improved. So some days, believe it or not, Annika, I don’t notice my left side.
Bill Gasiamis 51:16
And that’s a cognitive thing, right? That’s a mental thing. It’s not that my left side has changed. It’s that I’ve changed the way that I respond to it and experience it. And then I have to catch myself every once in a while again, I have a nice one that said, Ah, damn it. Now I’ve noticed that.
Annika Luke 51:41
Yeah, no, I Well, what I do all day is I alternate between hot and cold, because I can feel hot, and I can feel cold, I cannot warm and I cannot feel cool. So I have ice packs that I touch. And I have like things you put in the microwave, a heating pad and type things. And I play with them. And that’s one of the ways that I like relaxing at night is I’ll sit there and touch them with both my hands.
Annika Luke 52:14
So that they’re trying this, the left hand is trying to learn what the right hand is feeling. Yeah, I’ve noticed that it makes it feel better. Because especially when it’s really cold, it’s a sensation that is not getting a sensation. So when it does, it’s really happy about that. And I’ve thought of, you know, like they sell those little mats that you can lie down on there, like acupuncture, puncture math. Maybe I should try that. Because sometimes I’ll just take a brush and brush my hand to get that sensation on my hand.
Bill Gasiamis 52:54
Is that a sensation? okay to feel? Is it annoying? Is it painful little?
Annika Luke 53:01
It doesn’t bother me I would, I would say like you the light. Touch really? does. So like, I wear only tights now basically, or shorts. Because if my pant leg rubs up against my little left side, it hurts. So that’s bothersome to me. So yeah, I don’t wear all my clothes anymore.
Bill Gasiamis 53:30
I’ve argued. I’m not sure if it’s possible for anyone on the planet to ever have this type of argument with my wife about the bed sheets. Because some bed sheets that were gifted to her by her mother made me feel uncomfortable in bed and I couldn’t sleep. Do not put these pitches on the bed anymore. They are terrible. Blah, blah, blah. Yeah,
Annika Luke 54:00
Yeah, they have a nice smooth
Bill Gasiamis 54:03
cotton, you know, whatever. And she thought that I was saying her mother’s bedsheets were terrible. Throw them away. I can’t sleep with this. bed sheets that make my left side feel uncomfortable and painful. As a result of that feeling on my left, I also sleep on my left side now because if I’m sleeping on my left side, the weight of my body is creating that hard sensation. While sleeping on my right side, the shades are creating that soft touch sensation. And it’s a really big problem. I can’t deal with it. And it stops me from sleeping.
Annika Luke 54:43
Well, be careful with your neck. You don’t want to get in some weird position. No Carotid Artery Dissection is for you.
Bill Gasiamis 54:48
No, I can’t sleep on my back. So I do have a pillow that supports my neck and all that type of thing. But yes, it is such a dramatic thing to have the wrong bedsheet For me, it’s such a problem. And I understand travel. I try to avoid all things that make me out of my comfort zone. But that’s probably not a good thing either. Do you know? I don’t want to end up in my 50s being one of those Grumpy Old Men who are bothered by everybody and everything.
Bill Gasiamis 55:23
It’s way too early to be like that. I’m only 50 I don’t want to get there. Until I’m 80 or something. You’re so you’re able to exercise, walk, run, are you able to have you been able to get back to that, even though your left side feels a bit strange?
Annika Luke 55:45
Yes, yeah, well, I don’t, I’ve never, I stopped running a long time ago, I was a runner, right after college. And then, when I was 34, I had my hip replaced because I had hip dysplasia. So I don’t run anymore. But I was doing HIIT workouts and strength workouts, and I was trained as a personal trainer. And I taught spin class and Pilates for a while. And so yeah, I’ve gotten back into my exercise. I don’t teach or anything anymore, but yeah.
Bill Gasiamis 56:24
How does the looking forward from here? How does the future look? What are you excited about?
Annika Luke 56:34
Um, well, I think I’ve come to realize what I’m grateful for. So for a while when the pain really hit in and then I realized, like, this is, this is it, this is the rest of my life, I’m gonna be feeling this. I took it to go to meditation. So I started doing meditation and gratitude meditations, in particular. And so I’m, I’m just grateful that, you know, I have everything that I have. I have a wonderful family, really good family and friends. And, you know, I’m just so happy that I have that. And I want to enjoy that. And so I really, want to travel a lot.
Annika Luke 57:26
I, we’ve done a couple of trips recently, and it felt good to be able to do that. And I know my husband likes to travel. So he and I will be doing that in our retirement future if we get to that point lucky enough.
Bill Gasiamis 57:44
Yeah, perfecting out was the hardest thing about stroke.
Annika Luke 57:50
Um, just the loneliness of it, you know, like, not wanting to burden everybody with like this. I mean, my poor husband had to hear me talk about stroke, for every walk we went on for a long time. But even though he’s so empathetic and so good. It’s just, and I have great friends that I could lead on to, but there’s just still something so isolating about it.
Bill Gasiamis 58:23
Wow. A lot of people describe exactly what you said that it’s stroke is isolating. And I’m not sure how I haven’t been able to understand specifically why it’s isolated. But I felt, I still feel that I felt that I still feel that I still have moments where I’m not trying to be annoying, or painful or weird or anything. But you just don’t get it. I just can’t express and I don’t want you to get it.
Bill Gasiamis 58:54
You know, these are conversations that I’m having with people, right? I just don’t want you to get it. But I need you to get it. And I know you’re never gonna get it. But it’s so hard to be me. And yeah, I’ve never felt it harder to be me because I felt like previously when it was hard to be me it was because of something I concocted that wasn’t a real thing that if I changed my mindset, or if I had another opinion, I could redirect and take a different path and it’ll be fine. I could resolve that particular matter.
Bill Gasiamis 59:27
That was ailing me. But right now, this thing that happened to me is not something I can divert away from. It’s following me everywhere I go doesn’t matter what I do. Yeah,
Annika Luke 59:43
And you always wonder, if I said something stupid was that because I had a brain injury? Or did I just say something stupid because sometimes I say stupid things like you never know? I mean, I always fumble over my words and stuff.
Annika Luke 59:58
So that has nothing to do. With the fact that I had a stroke, it’s probably just who I am. But you always question your own choices and your mentality. Like, are you okay? Yeah, fear of having another one that does loom over you. You’re like, I don’t want to do anything stupid.
Bill Gasiamis 1:00:21
Does that mean that you’re making different decisions about how you go about being physical?
Annika Luke 1:00:30
No, because I’m back to doing HIIT workouts and stuff. And in some ways, I even think about it as therapeutic. Because where it hit in my brain when you hit that parietal lobe, there’s a lot of in there that does, like not only feeling and sensation, but it’s also where you are in space. So oftentimes, when I’m working out, I’ll sort of stop and guess where I am, and then look down, just to test myself.
Annika Luke 1:01:02
Because I feel like that, and also, balance is important, too. So I think that when you’re working out if you’re gaining that balance, you’re growing that part of your brain as well. Yeah, so there’s a lot that is beneficial to the exercise, I don’t lift heavy weights anymore, especially over my head. But I still do work out daily. Yes. And I walk quite a bit, I would say, I do about a mile in the morning and a mile in the evening.
Bill Gasiamis 1:01:38
Exercise is so important, it’s one of the most important things if you can get any version of exercise done, no matter what your deficits are, don’t matter how bad stroke has impacted you, if you can just get physical in some way, shape or form that does support the brain to grow new pathways to recover, to heal, to do all sorts of things to useful.
Bill Gasiamis 1:02:06
In the last 12 or so months, have you had many trips back to the hospital thinking, oh my gosh, what is this in my head? What’s happening? I should go to the hospital and get it checked out.
Annika Luke 1:02:19
I have not gone back to the hospital. But even just this morning, I had a headache that seemed unusual. And I thought what is this? And I think it’s just allergies, quite honestly, but made me pause made me think twice about it. And I feel like I should go talk to migraine sufferers about the possibility like, hey, this could be a problem. Because it’s you’re so easily dismissed if you’re a migraine sufferer.
Annika Luke 1:02:49
But if I just would have asked, I want to scan, I think they would have found it sooner. And I think the whole thing could have potentially been avoided because it was the clot that broke off that caused the stroke. So had they discovered the dissection, which really the big tip-off there was the breathing noise that I was hearing was actually that the carotid artery was making a wishing noise as it was going past the tear.
Annika Luke 1:03:22
So that and I sort of kicked myself a little bit too because I know, I know that I need to do my research. And be my best advocate. Yeah, I should have done more.
Bill Gasiamis 1:03:38
Yeah, but you never planned for having had a stroke and needing to research that.
Annika Luke 1:03:46
No. Never knew. But if I had researched hearing a noise whooshing noise in my left, I would have potentially been able to figure that out. But you know, not medically trained.
Bill Gasiamis 1:04:01
Just a regular person. Are you hard on yourself because of that? Do you
Annika Luke 1:04:09
Always just question your own what you could have done differently. And I think I should have just asked for more. And I think being who I am, which is like no, everything’s fine. I think I was accepting of their answer if you’re fine. Go home. Here are some sample types of feelings where I should have said no, I’m not fine. This is not a normal headache.
Lessons from the stroke

Bill Gasiamis 1:04:38
What has stroke taught you?
Annika Luke 1:04:42
Oh, gosh, what has it taught me? If anything, to keep going, you know, grit is always been important and something I hope I instill in my children. But that’s a key part of life in general. And that’s how you are successful, you just keep going. Just put one foot in front of the other and do the next right thing.
Bill Gasiamis 1:05:08
Yeah. And if someone listening is early on in this journey, they’ve just had a stroke, they’ve just come home. Let’s say they stumbled across our interview, what do you want to tell them? About? The journey ahead,
Annika Luke 1:05:24
Sir. Enjoy the things that you can enjoy. Try not to think too much about what the future is gonna hold. Because you just don’t know, enjoy those little things. You know, I’ve been so happy to have my children, my husband, my dog, you know, I get a lot of joy out of them. And I think that everybody has those little joys
Bill Gasiamis 1:05:57
about those moments, isn’t it? It’s about the moment that you’re in right now. For example, right?, I’m enjoying our conversation. And I get to do it once a week at least, have done it for the last nearly three years, once a week for the last three years. And I’m grateful that I had a stroke that led to a podcast, that is me, speaking with other stroke survivors who get me makes me feel less alone. And it makes me not have to tell my wife about it. Again, and again. And again and again for 10 years solid.
Annika Luke 1:06:42
Yeah, yeah, I was a little worried about coming on here. Because I always feel like all your guests seem profound. And, like, almost happy that they had a stroke, I, I still am going to hold the stroke as the worst thing that ever happened to me, and I’m going to keep it there.
Bill Gasiamis 1:07:01
Do you do that? You do that and let it. Let’s see what happens with it. The reason I say that is because you might know that I’m about to release a book called Stroke The Best Thing That Happened to Me. But the very beginning of the book makes it very clear. When a stroke happened to me, that was not the best thing that happened to me.
Bill Gasiamis 1:07:23
It was the worst thing that happened to me. And it’s the evolution of my life and how I’ve grown and developed that led to stroke, in hindsight, becoming one of the best things that happened to me because my life has a clear trajectory change. And it would never have happened. If it wasn’t for the stroke, it never would have happened, I would have just gone about being my Neanderthal old self.
Bill Gasiamis 1:07:56
And I would have struggled with all of the pretend pretending and all the stories that I said to myself about why life was hard. And from a physical health perspective and a mental health perspective. It motivated me to do better in every aspect of my life, to look after my nutrition, better to look after my mental health better, attend to my emotional health, mend my relationships, make better connections with people to let people go from my life that was not serving me.
Bill Gasiamis 1:08:50
So it is an opportunity for growth is what I’m trying to sell to people is, you know, this is an opportunity for post-traumatic growth. And you might not see it yet. And you might not know how and you might not know where it’s going to come from. But the simple fact is that you decided to reach out and get onto a podcast and share your story. I mean, that’s a cool thing. And if you listen back to the podcast, you might find that some of the things that came out of your word out of your mouth are profound words.
Annika Luke 1:09:32
Possibly, but well, maybe leave it at that because I still think the worst thing, but you know what, even if it is the worst thing, it still means that everything else is better. And isn’t that happy?
Bill Gasiamis 1:09:48
Isn’t that great? Yeah. See? There you go. That’s perfect. Well, on that note, thank you so much for being on the podcast.
Annika Luke 1:09:57
Thanks for having me.
Bill Gasiamis 1:09:58
That’s a wrap. We’re done.
Annika Luke 1:10:00
A great buy.
Bill Gasiamis 1:10:01
What a lovely chat. Thank you so much. I’m going to edit this and put it up, it’ll go up in a couple of days, there’s not another podcast ahead of this, and I’ll use the images that you sent me for promotion. And even though you’ve sent submitted images already, you will receive an automated email because I’m dealing with stroke survivors, and I have to completely remind them all the time, you will receive an automated email that asks for all this stuff again, but if you’ve already done it, just ignore it.
Annika Luke 1:10:34
Okay, that sounds good.
Bill Gasiamis 1:10:36
Enjoy the rest of your day.
Annika Luke 1:10:38
Thanks, you too. Bye. Bye.
Bill Gasiamis 1:10:44
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 recoveryafterstroke.com/episodes If you’d like to support this podcast, and I would love it if you do, please leave a five-star review and a few words about what the show means to you on iTunes and Spotify.
Bill Gasiamis 1:11:08
If you are watching on YouTube, comment below the video, like the episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. Also, if you are somebody who has already left a comment and responded to one of my episodes, thank you so much. I truly appreciate it.
Bill Gasiamis 1:11:27
It makes a massive difference to the algorithm. And what that does is put the episode in front of people who need to see the episode. For example, stroke survivors who are searching for this type of content. Once again, thank you for being here and listening. I appreciate you and see you on the next episode.
Intro 1:11:48
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 1:12:05
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.
Intro 1:12:18
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:12:43
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:13:10
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 The Worst Thing That Happened To Me | Annika Luke appeared first on Recovery After Stroke.
1 hr 14 min
August 14, 2023 Finding Wholeness Through Somatic Healing with Yuji Oka
Recovery is more than movement — somatic healing reconnects your mind, body, and identity for deeper growth after stroke.
Adapted Spiral Praxis Youtube Channel
Spiral Praxis
Adapted Spiral Praxis
Highlights:
00:56 Introduction
02:10 Yuji Oka’s Background
11:41 Thinking and physical experiences
22:12 The importance of not thinking about movement
28:22 Dealing with involuntary movements
33:40 How to positively impact the body
37:17 The curiousness of being a child
43:01 Dualities and polarities in our being
49:12 The spiritual side of the situation
1:02:52 How do you deal with pain?
1:13:26 How the podcast came to be
1:20:15 Life as a process of learning
1:26:23 Where to connect with Yuji Oka
Transcript:
Yuji Oka 0:00
The woman that I’m working with who’s working through paralysis, one of the things she’s finding with herself is that she was a project manager. And so she was very much into, she’s kind of driven type a personality.
Yuji Oka 0:16
And now that she’s injured, she has to find the other side of herself. She has to find the patient, I gotta trust in the process, I can’t push this, it’s out of my control. And so somehow, you know, in a strange way, when you go through a process of healing like this, in a way you can get more whole, you know, parts of yourself that you had forgotten, you start to integrate.
Intro 0:44
This is the recovery after stroke podcast, with Bill Gaisamis, helping you navigate recovery after a stroke.
Introduction – Spiral Praxis

Bill Gasiamis 0:56
Hello, and welcome to the Recovery after Stroke podcast. 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 is be a stroke survivor. Or you are one of the fabulous people who help stroke survivors.
Bill Gasiamis 1:16
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. In today’s episode, I’m joined by Yuji Oka, who is the founder of the Spiral Movement Center. Yuji helps people with neurological disorders and acquired brain injuries to reestablish the connection between the brain and body.
Bill Gasiamis 1:46
Developed over 35 years ago, Yuji’s approach to rehabilitation has helped 1000s of people gain a deeper awareness of their bodies and dramatically improve their motor functioning. This is a very deep philosophical conversation that you may benefit from if you listen to it more than once. Yuji Oka welcome to the podcast.
Yuji Oka 2:08
Thank you for having me.
Yuji Oka and his background

Bill Gasiamis 2:09
My pleasure. Thank you for being here. I am excited to have you here because I understand a little bit about what you do. And the way that I understand it is that you help people with neurological injuries, overcome the deficits and rewire the brain. But as correct. In your words, why don’t you tell me what you do and how you got to be in the position that you’re in now?
Yuji Oka 2:37
I work in a field called Cymatics. And in particular, I work on what I call body-mind Cymatics. In this field, basically what you’re dealing with here is just focusing more on the internal experiences and the learning process that a person is going to go through when they’re dealing with their body.
Yuji Oka 2:58
And so like, for example, a lot of people who have had strokes or any kind of brain injury, there’s the traditional sort of medical stuff that happens that needs to happen, you know, all the drug treatments, surgeries, all of that might be happening.
Yuji Oka 3:18
But then there’s always the piece, you know, that is how you feel inside how much you feel like yourself. And that can range from a physical part and an emotional part mental part. And these are things that there are no real metrics for, it’s your experience that counts.
Yuji Oka 3:35
And in my field, that experience is a leveraging tool. But when you understand that your experience, your internal experience is telling you something. Is something telling you deeply about yourself? As a person, your learning process, and how you’re gonna get how you’re going to deal with the challenges that are ahead of you.
Yuji Oka 3:59
So I work with kids, I work with adults, my background, I have a background in physics and dance. So I’m interested in the scientific part of this, you know, the kind of the, the, you know, I feel that we all experience things in similar ways inside there are laws of our internal experience. And at the same time, I recognize that there’s a sort of art to this, everybody is going to enter into that healing process through their door network. It’s a creative process that lends itself to the lens of dance and art and, and how people get excited and motivated to fully express who they are.
Bill Gasiamis 4:45
Okay, beautiful. What came first, was the study of dance or physics, physics, physics. Did that lead to dance? How did that evolve?
Yuji Oka 4:59
You know, I come from a line of scientists, my father is a fairly well-known scientist. And so I was expected to be a scientist and I love mathematics. I love the logic and the, the process of it. And during that time, I studied things in neurophysiology, and I learned all the medical stuff. But you know, during my studies, I was just one big brain, I felt like I understood everything through the lens of the intellect, but I didn’t know my body.
Yuji Oka 5:31
And I just started taking dance classes in college started very, very late. But I fell in love with it. And I had to change. There’s something that drove me to change my field, actually only had one credit left, I was at Cornell University, and I had one credit left. And I couldn’t finish the degree. I knew if I finished that degree, I’d have to go into physics. So I decided, I was going to leap, and I decided to go to modern dance.
Bill Gasiamis 5:58
Wow. So you had to physically stop yourself from finishing your physics studies? Because you knew that if you had finished them, there was only one path for you to follow.
Yuji Oka 6:17
Exactly, Yes. And it wasn’t like it was a failure-type situation, I was doing well in school and all of that. But, you know, I think this is part of it, you know, all of us are driven by these internal needs, you know, we know, we’re sort of driven to the things that we need to do. And in my case, I was always interested in you know, the beginning of things I, you know, I did the math and all of that, but I was interested in philosophy. And that’s sort of the beginning of thinking.
Yuji Oka 6:54
And I felt that through dance, I eventually found my path in dance. And I realized I didn’t want to do ballet and modern, I had a company and all of that. But what I was interested in what unfolded for me, as I started working with people who were injured, was the beginning of the dance, I just love this idea that when we are exploring our bodies, we have this miraculous thing, where we somehow know, we go through a process of learning how to move and how to use our bodies, and we live in this body through our whole lifetime.
Yuji Oka 7:29
And that process of unfolding from the very beginning is what interests me in particular, I think this is what’s relevant to people who are, who have experienced brain injuries, and they have to start at the beginning. And that process almost is like a second childhood for them. And I love the sense of discovery this is a passion of mine to see people.
Yuji Oka 7:58
We visit those different points in their life with areas that they experience without necessarily a full cognitive awareness. But with the older people that I work with, it’s like they have to learn everything all over again. And I love that process. I think it’s like, it’s a fascinating process.
Bill Gasiamis 8:17
I made a couple of points, as you were describing that part of your career with regards to the dance and the sciences, and you said, you know, philosophy was part of the beginning of thinking, I, I imagine what you’re talking about is critical thinking it’s not the, the part of thinking just like about something general or basic, but deeply thinking and thinking about the way you think, even Is that what your version of thinking is? What type of thinking Have you taught Yeah,
Yuji Oka 8:57
I think it’s even more rudimentary. I have a lot of people that I work with children I work with, and people who have gone through brain injuries, they lose their capacity, to talk sometimes. And even at the very beginning, they might be in a place where they’ve lost sort of that higher level of consciousness, they’re unable to form words and thoughts, in the way that they used to.
Yuji Oka 9:22
And so they come back to the basis of thinking and thinking starts really with the senses, you know, your eyes, your ears, you pick up these experiences, you say it in your sound, and these perceptual experiences, eventually become, you know, concepts and thoughts and, you know, laws of, of nature. But initially, they’re just physical experiences.
Yuji Oka 9:51
And so the thinking becomes a perceptual process. So when a brain person experiences a brain injury, for example, they very often have to, they can’t sometimes talk even. And they realize what they can do is they can sense their bodies and they start to find, like just spatial relationships, you know, what does it move mean to move my arm in this direction?
Yuji Oka 10:18
Like, what is that? And that spatial, temporal energetic sort of process of exploring your body is sort of a primal form of thinking, it’s perception and thinking. So it goes deep, I feel like where I start with thinking is just the sensorimotor stage.
Bill Gasiamis 10:41
I love that you’ve taken thinking out of the head, I love that you’ve taken thinking out of the head, and thinking is part of what the body helps you to do. It reminds me of a moment in my life, and probably many people will relate to this when I think simply based on the fact that somebody said something on TV, and I have immediately formed an opinion or an idea, and I just run with it.
Bill Gasiamis 11:09
Not really going into the process of paying more attention by using my senses, my eyes, my ears, my nose, and understand the lay of the land, rather than just taking words that somebody has said, and I embody them, and then I just run with it with the very, with a lazy version of thinking, which is just perhaps for the sake of feeling like I have something to say about a topic that I’m not an expert on.
Thinking and physical experiences – Yuji Oka
Yuji Oka 11:41
Yes, you know, I think thinking has to deal with our relationship with reality in the universe and the world around us, you know, and this is the Piaget idea that you build up all these physical experiences, you know, let’s say, for example, you, you, you lift your arm, you know, at the very beginning, your body isn’t, you don’t consider it part of you yet, you know, it’s sort of just an object of exploration like anything else, and you’re discovering things about it, you realize that it has weight, it can fall it, it can feel pain, and it can pick up objects.
Yuji Oka 12:17
And all of this is the precursor to thinking, you know, and when thinking is connected to that concrete experience, it becomes a very, very, you start to understand what, its function is in life. And that is, to have you come into a relationship with the things in the things around you and how to navigate and interact with people’s objects and things like this.
Yuji Oka 12:49
So, yes, this thinking, and, you know, I’ll tell you, there’s a very fascinating book that inspired me in my work. It’s a book by Qatar. He’s the German clitoris. But he also was a scientist, he did something about colors. And he made a book where he made all the observations that you feel when you look at color.
Yuji Oka 13:11
So if you look at a bright light, and you look at a dark place, you’ll see the image of that light in that place. And all of these things. He has like 800 observations, and each one of them you can do now like it’s everybody experiences the same thing, we experienced it slightly differently, we might have more powerful eyes, less powerful eyes.
Yuji Oka 13:32
But we all experience these things. And I feel like all of this, like raw data that we start with, is again, thinking body-mind is why we call it body-mind is slick, this primal place where we make all our connections together.
Bill Gasiamis 13:48
Yeah. Do you recall the name of the book?
Yuji Oka 13:51
Yes, it’s the theory of colors. Okay.
Bill Gasiamis 13:55
For anyone who’s listening, and might be interested in the theory of colors, I’ll have a link in the show notes so that people can refer to that if they feel like it. Okay. So thinking, go ahead.
Yuji Oka 14:14
Well, I just want to say that, you know, from a pragmatic point of view, people who are going through that process, where they’re going through rehabilitation, after brain injury, are going to find the similar things that everyone goes through, just like in this book. And I think this is fascinating. They’re going to have to learn about how their body is aware.
Yuji Oka 14:38
They’re going to have to hook into how to initiate and how to, what it means to have that spark where a movement starts again or a function of your brain starts to get back online. All of these are part of this body-mind process where everything starts at the basic thing of thinking and feeling And moving.
Bill Gasiamis 15:02
So in that case, does acquired brain injury from either a trauma to the head, a stroke, or something along those lines? does. Does that unlearn what has made us unlearn a method or a process of thinking? And therefore, is part of what you do helping people relearn the somatic version of thinking?
Yuji Oka 15:37
Yes, yes. So for example, one of the things I sent you was a video of Dylan a 16-year-old boy. And he had exactly this problem, he had gotten to a point where he had a brain injury. But there were certain things that he couldn’t solve there was a tremoring, that was starting to happen, it was stopping all his functions, and he could literally not grab onto objects and so forth. And he had plateaued out.
Yuji Oka 16:07
And, to overcome that tremoring, he had to reexamine pretty much everything, he had to re-examine first, you know, just the physical part of his situation. But he had to find out his relationship to pain, he had to figure out that a lot of what he was doing was to focus on, you know, sort of, he’s very much into sports.
Yuji Oka 16:30
So he was focused on the competitive nature of sports. He had to understand that for him to heal, he couldn’t be worried about other bodies and competing with them, but he had to know himself first. And that process became very, very important. And he also had to relearn how what it meant to have confidence in himself.
Yuji Oka 16:50
You know, what does that mean? You know, normally we measure by what we can do. But in the case of brain injury, we can’t do that much at the very beginning. And so it had more to do with self-understanding, had to do more with just like learning, hey, the way I’m going to feel good about myself and confident about self is to know what makes me tick.
Intro 17:11
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, and doctors will explain things that, you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 17:35
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 sevSeven Questions askAsk Your Doctorout 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, but they’ll also 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.
Yuji Oka 18:14
How how how I process things? And so yeah, he had to relearn a lot of those things. And that’s part of the healing process, not just a bunch of exercise he has to do, but he has to kind of re-examine who he is as a person. And so he is sort of reinventing himself as a thinker, as a feeler as a mover, everything.
Bill Gasiamis 18:35
It’s identity level. Exactly. realize, okay, so So immediately because I did watch Dylan’s story enough, it’s amazing. Dylan was injured in a car accident, he had his head damaged. As a result, he developed some, I had some deficits, and those deficits seem to be progressing to getting worse. And I think that’s somewhere around the time when the family got involved to the next level and interacted with you. And basically, you seemed in my mind to decrease the strength of the neural patterns for tremors and increase the neural patterns for not tremors.
Yuji Oka 19:21
Exactly, It was a very interesting situation. What was happening was that he was on a drug to calm his nervous system. And then what happened was, he went off that drug, and all of a sudden he started carrying this tremor in his hand. And that tremors just kept getting increasing, increasing and increasing.
Yuji Oka 19:44
And it got to the point that when he would reach for objects, he would just knock them over. He couldn’t he couldn’t close his hand. He couldn’t grade And it was causing him the problem. You know, it was sort of his stopper that was stopping all the progress on all these different levels. And when he was dealing with that situation, there were lots of dimensions.
Yuji Oka 20:10
And this is what you find in body mind stuff is that there’s not just the physical aspect and neurological aspect of it, you know, there’s something in the brain that’s not working. But all these circumstances create that thing. And one of them, for example, was social shame. That is, he didn’t want people to see him.
Yuji Oka 20:28
So he would hold his hand and kind of like trying to restrain it was kind of like, the more he held it, the more that energy builds up with happen. And so he was kind of creating this feedback because he didn’t want to move his hands. So that was one thing. The other thing that was happening was that there were lots of pockets of pain in his body that hadn’t been released.
Yuji Oka 20:51
And his body was kind of being triggered by the things that he didn’t, he had been living with the pain for so many years, that he kind of didn’t know that existed. So there was a pain cord that was also happening. And then there was also the most interesting thing maybe was that he was trying to learn how to move his body from using this part of his brain, you know, the frontal lobe stuff, you know, the thinking part of his thing.
Yuji Oka 21:21
So he was trying to Will his hand to do it but you know, moving happens from a much more primitive part of your brain starting from the cerebellum and your spinal cord, it’s coming from a more unconscious part. And you kind of have to let your body do it.
Yuji Oka 21:38
This was the biggest thing that he had to learn that he had to learn to go back to moving, he couldn’t do it through his head, he had to tune into his body and kind of relax, calm down, and not be afraid of looking at pains in his body. And just working all that out before he could start to realize what it meant to control his body.
The importance of not thinking about movement
Bill Gasiamis 22:12
It’s counterintuitive because he had to not think to move his body he had to do just do. Thinking about it. Perhaps in the head-based thinking, not the Cymatic version of the thinking, which we’ve already discussed. Thinking about it is overcomplicating it in my mind, it sounds to me like if I have to think about moving when I had to learn how to walk again, it was so difficult to do, it was so draining, so energy sapping that I couldn’t sustain it for a long time anyway, I had to have faith in my legs ability to give the feedback to me and my brain.
Bill Gasiamis 23:05
So that when it was on the ground, even though it felt different, I had to believe and trust in the fact that it was on the ground. And the feedback that was given to me was that it was a new language, but it was feedback nonetheless, that it was on the ground. And then that therefore, that released the tendency of my knee to overcompensate and also created a situation where if my li wasn’t overcompensating, it also wasn’t undercompensating, because my knee would buckle.
Bill Gasiamis 23:39
And as a result of that, I started, to feel and understand the way that my leg was now responding rather than trying to think about how I was responding and looking at my leg. Falling my foot, landing on the ground, and then and then wondering whether or not I had it in the right position or not. So I kind of had to learn visually what the position of the foot knee and leg were when they were in the quote-unquote, correct position.
Bill Gasiamis 24:17
And then once I visualized that and knew what it looked like, I had to believe that my body was doing it and risk falling over and risk injuring it. Even though that would not have been the best outcome. It would have been a learning opportunity to say, Okay, I have to make an adjustment and allow for that thing that caused me to lose my balance trip over my knee to buckle or my knee to overextend on my hip to give way.
Yuji Oka 24:47
Yes, how old were you?
Bill Gasiamis 24:49
I was 37.
Yuji Oka 24:51
Wow. So it’s later in your life. Okay. Yeah. So surreal. I’m working with a woman who’s about 40 and she has described something very similar to you. She was on a trip and she was in the Dominican Republic and she went on a waterslide. Someone went after her, hit her head and she became a quadriplegic, there. And she’s just relearning, she just came back, and they did an emergency surgery.
Yuji Oka 25:23
And one of the first things she realized is that you know, she’s, you know, they’re doing all this physio, and the first thing she just realized that she found effective was exactly what you said, she was spending her time looking at her feet. And that visual, just establishing that visual in her mind, was her first link tax ability to move.
Yuji Oka 25:49
So when it was out of sight, out of mind, she couldn’t do anything. She’s just feeling spasms. But when she got in the chair, she would tilt the chair so that she could see her feet. That was the first moment that she started moving her feet.
Bill Gasiamis 26:01
And if I have to be honest, the very first moment before that, and, I was 40 years old, I had to look, I had to learn how to walk again, after my brain surgery at 40. My whole, the whole episode started at 37. But at 40, I had brain surgery. But honestly, the first time I imagined I saw my leg in the correct posture, correct position landing on the ground correctly, was before I’d started rehabilitation, it was in the hospital, waiting for rehab, imagining myself walking the perfect stride.
Bill Gasiamis 26:39
Before I had started rehabilitation, maybe a day or two before I first got on my feet for the first leg therapy session. And I was just imagining myself looking at the third person running the story in my head, imagining myself and seeing myself walking and creating an image of what that looked like. And then I applied that image to the actual first session of therapy. And then I was able to remove myself.
Bill Gasiamis 27:19
And then I was able to take my head out of the equation, and then just trust in the process that I just explained. And if I go one step further back, the very first day after brain surgery, when I woke up, and I couldn’t walk, I was attached to a harness onto the ceiling. And that was holding up my weight. And I recall and I have a photo of this, I recall myself holding on to the parallel bars and looking down to see where my foot was landing.
Bill Gasiamis 27:48
So, there were three stages to that it was the initial stage where it wasn’t working at all, where I didn’t know the new language that my leg was giving me. It was the second stage when I was imagining the correct physical process. And then the third one where I had faith that my leg was going to be able to deliver the outcome for the correct.
Yuji Oka talks about dealing with involuntary movements
Yuji Oka 28:23
Yes, you know, you’ve outlined a process that’s, that is very, very important and very, very deep inside the situation. You know, we’re initially looking for movement, you know, purposeful movement, that’s the goal. And that’s not usually what happens. And sometimes we have these involuntary movements that are happening and the politics. So that’s what this one was dealing with involuntary movements, and, you know, literally, no voluntary stuff whatsoever happening in that situation that relates to this first stage.
Yuji Oka 28:54
And, you know, in this stage, things are already happening. Like sometimes when those specificities and things are happening, people look at that and say, oh, gosh, look at me. But you know, all of that is positive, your body’s like actually moving, you know, just the fact that it’s moving, whether it’s voluntary or not. This is a whole unconscious process where your body’s trying to figure out where am I what am I doing, you know, how is this work?
Yuji Oka 29:19
And that second stage where you’re starting to look at your body and making these connections, there are all sorts of things again, going underneath the hood, there, even though there’s not the movement per se happening, still purposeful. Your nerves are kind of rehearsing themselves. You know, the kind of like figuring out, okay, what’s the like, again, what’s that impulse feeling where, you know, What’s it supposed to feel like in you’re looking at yourself?
Yuji Oka 29:45
You’re trying to send impulses in your body, hit or miss, something’s working. It leads to a movement, a lot of times it just leads to nothing. It’s dead. You just use this word. Is it offline? What is it? This is all an exploratory process that’s happening. the thing that’s happening on the level of your muscles, nerves, your bones, all inside your body. And then yeah, there’s this thing where it gets translated into movement.
Yuji Oka 30:09
So this general process that you’re talking about is exactly kind of the area that is this body-mind somatic process where it’s, it’s half, it’s more on the unconscious part of things, it’s just happening under the hood. And your conscious mind is trying to make a connection between, you know, where it’s at, and trying to find a language that is connected to that, you know, physical unconscious processing that’s happening deep inside your body.
Bill Gasiamis 30:43
Physics came first, then came dance, and then from dance, did you move into this space? How did you start to move into this space? Tell me about the transition from dance to this space.
Yuji Oka 30:55
Yeah, well, I was dancing. And there was a grant that was brought up, and I was in Cleveland at the time. And it was a big grant, you know, it was a big push to put arts into the school. And as it turned out, you know, I just had a small company, just two people. And somehow I got this grant. And I was charged with making a curriculum for a school with kids with behavioral difficulties, special needs, autism, ADHD, developmental delays.
Yuji Oka 31:30
And initially, I wanted them to Just Dance I thought, Oh, just go in there, making dancers just have to improvise whatever it is. And then I found out like, you know, that doesn’t work. These kids again, have to learn from the very beginning. They’re not in touch with their bodies, they freak out, they shut down. They, they don’t know themselves. And so what was just an art project at the very beginning, became this, like, very important question like, Well, how do I get them to connect with their bodies?
Yuji Oka 32:02
And, you know, that’s pretty much how it started out working with kids, these kids are amazing. Because they’re just like people with brain injuries, like, if it works. It’s so connected, like, you see them connecting. And if it doesn’t work, nothing happens. So you’re just in this place where you’re working with bodies that are finely tuned to progress and, you know, figuring out ways to do it. And I learned a lot in that place.
Yuji Oka 32:36
I learned, for example, that a lot of times when you’re dealing with patients and kids with disabilities, you try to give them use try to simplify, and you try to dumb it down and make things rigid, like programmatic. And the success I had was, because I didn’t do that what I tried to do was to it’s work on skills, but to do the opposite. Instead of like drilling it into them. I had them go through an exploratory process where they were, like, trying to get at that movement from different ways.
Yuji Oka 33:11
I put them on in clients, working with partners, working with weights, slowing it down, spinning it up, just getting them, to explore. And I think that this is crucial for anybody who is working from that place of injury, that it’s initially an exploratory process. It’s not about strengthening. It’s not about learning the skill immediately. But it’s first of all, exploring your body and just figuring out again, how this thing ticks again, as how do I get aware of it.
How to positively impact the body
Bill Gasiamis 33:40
It sounds like what you’re doing is creating the opportunity for information to come in, in very different formats in many different ways. Perhaps information about the body came in one rigid way, in the past, because of their not connectedness to their body. Therefore, having a larger sample of ways for information to become available to the body, you can then potentially impact the body for somebody who has a unique way of getting to that, for that information to pass through to get and make the connection where you see the connection has been made. It sounds like you’re broadening the possibility of how to positively impact somebody’s body.
Yuji Oka 34:41
Yes. You know, sometimes, again, I think this is something that sometimes we’re finding in the medical field. I work with a lot of medical professionals. I work with a pharmaceutical company, and I’ve worked with universities. And what I find fascinating is, you know, the medical field is finding that out as well. That I think they’re in the business, usually of working with people who have had very strong abilities, and then they have an injury.
Yuji Oka 35:10
And so you’re trying to get them back from where they are. But usually, it’s not. You know, that drastic thing that we sometimes see with brain injuries and, you know, kids with strokes where it’s like, no, it just went way back. You know, it’s like, it’s not like, Oh, can I, you know, you know, it’s not just about walking, it’s like, can I even like, feel at home on the body again, you know, can I, you know, can I feel the same way I used to feel.
Yuji Oka 35:39
So, when you start from the beginning, you go through a whole different process that is, is very, very individual. And it just speaks to, to who a person is, like, you just go back to that time when you were, you know, under six years old, and you’re just trying to figure out, like, you know, before any of this stuff of higher level stuff, just how do I move my body? And how do I feel myself? And when do I feel comfortable? And how do I self-regulate all those issues?
Bill Gasiamis 36:11
It sounds like earlier, you mentioned, I’ve got to experience a second or second childhood. It’s really important to be young at heart. In that case, whether you’re 70 years old, 60 years old, or 50 years old, you need to be young at heart and get curious about the possibility of what you’re doing, how you’re going about it, what, you know, I remember my kids looking at the hand and going, what is this thing? It’s quite moving it, it’s twisting, I can see it, it’s touching me.
Bill Gasiamis 36:45
And then at some point, when they stop looking at it like that, you know that they’ve made the connection that it’s them. But until that time, they haven’t made the connection, that it’s them, and they’re poking themselves in the eye, and they’re putting it in their nose and their mouth, and it’s just going places, and then one day they observe it, and you can tell something different has happened in the head, they’ve changed.
The curiousness of being a child
Bill Gasiamis 37:09
And I feel like we need to permit people to get back to that stage in their lives. They’ve been there before, and perhaps they thought they were beyond that, and they were past that stage of their life. But I think brain injury does necessitate, the curiousness that you instinctively practice when you were a child way, way before we overthought being childish, as a bad thing, rather than now being childlike, is potentially benefiting your recovery.
Yuji Oka 37:54
Yeah, yeah, there, you know, we, you briefly touched on that identity. And, you know, it is about rebuilding your identity, your, your identities, initially starting is always connected to your bodies always connected to who and what you are, what you you can do basically in stress with your body. And when that gets disrupted to the level that it does with brain injuries, everything changes. I’m wondering for you, things must have changed completely for you when you got your brain injury. You know, in terms of everything?
Bill Gasiamis 38:24
Well, yeah, so the, I think, if I have to describe the hardest part for me is for the people who are into astrology, I’m a Gemini, Gemini. Gemini is to, you know, face the two people in one body, whatever you want to call it. So it’s what I experienced when I woke up from surgery was that my left side now felt completely different from my right side, straight down the line. And it is a completely different version of myself. The challenge that I have is that both of them need to coexist at the same time.
Bill Gasiamis 39:08
It’s like being conjoined twins. Okay, and then somehow trying to create, create cohesiveness, harmony between the two conjoined parts of me and get them to work as one even though they are both, too. So they have their own identity. They have their way that they express themselves, they have their way that they speak to me and giving information to me. They have their way of behaving.
Bill Gasiamis 39:43
And I’ve got to bring them together. So that says when I’m writing a book or doing a podcast, we’re all on the same page. And that’s the hardest part because when I’m in flow or a zone, I don’t notice it but when I noticed that I noticed that my left side feels colder, my right side feels not well, and my right side feels like it’s always felt. My left side feels tingling, and burning, reacts to temperature reacts to the wind gets tired quickly.
Bill Gasiamis 40:21
It’s a different part of my personality. It’s a second iteration of me. And it occupies only half of my body. Right down the line. Yeah, What’s interesting is on the left side, obviously is where my heart is. So I have noticed a different way of how my heart expresses itself compared to how it used to express itself. And it’s, I’m wondering, I didn’t have an answer for this wondering, but I wonder if it was the opposite.
Bill Gasiamis 41:01
If it was switched, where my left side remained, quote, unquote, normal, and my right side was different, how I would experience my heart would have just remained the same expression that it always was. I think now my heart feels more sensitive, more easily. I’m not sure if the words offended or more easily hurt or upset than before.
Bill Gasiamis 41:29
But my heart coming online has also enabled me while I explained it’s come online in a different way, and it has enabled me to create better conversations, deeper conversations, more philosophical thinking, and more emotive thinking, it’s guided me to do what I love more than what I used to do before. Before, I used to do what my head told me I needed to do to make money to make a living never to do anything like this, which is free for everybody to download.
Bill Gasiamis 42:06
So and then I’ve had to get curious about how I live with these two versions of myself, because people experience me differently, but I experienced me differently. And sometimes it’s hard to, it’s hard to. Sometimes the ability to notice the difference is really difficult to live with.
Bill Gasiamis 42:30
Sometimes really, if I’m having a bad moment, a bad month, a bad, whatever, it’s sometimes it’s like, wow, there’s this stuck, I’m in a relationship that is sometimes I’m in a very good relationship with my two hearts, sometimes each of my halves is in a very bad relationship. And I’m speaking about them because I’m noticing it as a third person, while the two of them are going at each other. It’s intensely insane.
Dualities and polarities in our being – Yuji Oka
Yuji Oka 43:01
You know, this whole idea of dualities and polarities in our being is, is very, very part of our body-mind, somatic viewpoint. And, you know, there’s a, you know, this is something historical, it’s not, you know, again, not just associated with brain injury, for example, just to give you an example, the right and left side of bodies have been traditional, you know, I’ve been associated, you know, like, the Latin form for the left is Sinestro, or sinister, and right, you know, right is right.
Yuji Oka 43:34
So there’s, there’s been an association with the left side being, you know, left and right side, the good and bad, but then there’s a neurological basis for this to us, you know, you know, a lot of us know, that the right side of our brain or left side of the brain, you know, there’s an analytical and a sort of creative side that people have started to find this neurological basis for.
Yuji Oka 43:54
And then I just think, just in terms of personalities, you say, these polarities exist, you know, in the astrology or whatever it is, that the woman that I’m working with, who’s working through the process, one of the things she’s finding with herself, is that she was a project manager. And so she was very much into, she’s kind of driven, a personality type a type personality. And now that she’s injured, she has to find the other side of herself.
Yuji Oka 44:24
She has to find the patient. I gotta trust in the process, I can’t push this, you know, it’s out of my control. And so somehow, you know, in a strange way, when you go through a process of healing like this, in a way you can get more whole, you know, parts of yourself that you had forgotten, you start to integrate.
Yuji Oka 44:45
And so there is a, you know, it’s important to understand that this healing process is not all about like, there’s something wrong with me and, you know, it is a chance at kind of, you know, starting over again and, and looking at things that you might have a We’re looking. And I think that when it’s looked at in that way, it’s a healthy process.
Yuji Oka 45:07
The reasons for our illnesses are, are out of our control, for the most part. And it’s really lovely to look at a healing process from a positive point of view and to see it as a place where there can be immense learning.
Bill Gasiamis 45:21
Yeah, as absolutely learning is not lacking. It’s so the learning the challenge with the learning is not a challenge the beauty of the learning is that it’s so deep. Right? It’s really deep, it’s not open the book, read the first 10 chapters, and tell me what the book says. It’s telling me what the book means.
Bill Gasiamis 45:46
What tells me what’s in the author’s mind, heart, and soul, tells me that that’s the part that takes work that takes a long time. So it takes a lot of conversations with people like yourself, you know, who come from, what I noticed is that these deep conversations with people like yourself, and some of the other amazing people I’ve interviewed, that work with people who are recovering from brain injuries, is that they come from a different place of philosophy, for example, thinking upbringing, whatever.
Bill Gasiamis 46:18
But they’re all working at the same location, they’re all working on the person’s identity, they’re all working on the person’s soul. They’re all working at a deeper level, they’re not working on, let’s see, you walk, they understand that it’s not the walk is the secondary part of the recovery. It seems like it’s the most important part, but it’s not I often say, to people who listen to my podcast that, you know, recovery gets allocated by the doctors with what they can see, first, which is all the person’s not walking, well, let’s get him to walk.
Bill Gasiamis 46:59
But what the doctors don’t know to do, and perhaps don’t have the resources to do is explain that emotional recovery and, mental recovery are just as important as physical recovery, and they are all interlinked. You can’t just do the physical recovery without tending to the emotional recovery, and the mental recovery, you have to do all three. And under those three particular headings, emotional, physical, and mental, there might be other subcategories.
Bill Gasiamis 47:34
And you can place whatever you want in that subcategory could be spiritual, could be part of the emotional recovery or religious, you know, for mental it could be, you know, thinking critically or curiously or in a new childlike way. The physical recovery might be, yes, that I’m doing something that appears to be walking.
Bill Gasiamis 48:01
But it’s learning that thing that we spoke about earlier, which was to trust in the body’s feedback, that I don’t have to overthink it and correct and over, tell her what to do and to accept what my body’s telling me, and learn the new language that my body is giving me. You know, so it’s a very it is this the depth of the learning, for me to recover to the point that I am today, and to continue to recover? has been I’ve learned more in 10 years than I ever learned in 37 years.
Bill Gasiamis 48:41
Let’s put it that way. It’s so much more. I’m not sure if the word is intense. I’m not sure if it’s intense, if that’s the right word, because it’s not a bad intense it’s a jam-packed full of information, deep learning stuff. You know, it’s nothing I ever experienced before the age of 37. And I was yeah, it’s just nothing. Oh, I can’t explain it. It’s amazing.
The spiritual side of the situation
Yuji Oka 49:12
Yeah, yeah. And I agree, you know, the, you know, the, the walking is a secondary, you know, walking, crawling, rolling, whatever it is that you have to relearn. You know, that is the way other people will see it, you know, they see the progress through the lens of your body and, you know, the look on the outside and say, oh, you know, Oh, I see you’re able to do that, and that’s what they’ll see.
Yuji Oka 49:39
But, you know, inside with the person and with, you know, relationship with the therapist, it’s the process, you know, it’s all those gaps in between that lead from one place to the other that is where the real learning is taking place, you know, and it’s nice to reach that milestone. But, you know, that processes like it is the key and the other thing I think is interesting, speaking of polarities is that, you know, there’s this depth of understanding, which is coming to the bottom of like, childhood, and just these primal states of being where you’re able to move your body.
Yuji Oka 50:16
But I also like this spiritual side of the situation. And what I mean by spiritual is, you know, I work with people from all sorts of different backgrounds and sort of spirituality as defined by their religion or something, maybe it can be quite varied, but I feel like, you know, underneath all of that, is this, this concern for mortality and, and, you know, universal human concerns, you know, that just cuts across lines everywhere age and race, religion, whatever it is.
Yuji Oka 50:53
And then that part of it, you know, again, this is hard to talk about, but it plays a huge part, in, in, in the recovery, like how you see the meaning of your life? And what motivates you what, what should motivate you what, you know, because you need to be so grounded when you’re in that situation, I think everyone’s that routed to such an extent, you know, because you’re not sure if you’re going to get it back or, you know, and you’re dealing with, also what, what does it all mean, to put it all back together again, and in the story that I sent you with Dylan.
Yuji Oka 51:32
I feel like even though he’s only 16 years old, I feel like the experiences that he’s had, you know, being close to death, feeling sort of, like, separated from other people, you know, this whole person, society and stuff, and he’s in it, but he’s also kind of observing it in his because he’s got a very particular situation. He had to learn to find inner strength inside himself. And that inner strength, I can’t describe exactly how and how you go about getting that. But I think it is about somehow confronting your situation.
Yuji Oka 52:10
And just coming to terms with what’s happening with you, and somehow accepting that and letting your yourself flow with it, to be okay with it, and to start to say, Hey, I’m going to, I’m going to live this, I’m going to live it, and I’m going to live it as fully as I possibly can. And somehow, there’s a point where there’s something unleashed, that can happen, you know, in the in the film, he goes to Niagara Falls, he, has this thing, and I feel like, you know, that was just a day trip.
Yuji Oka 52:44
But this is something that I felt was happening inside of him. Like he plateaued out and he had kind of lost a little bit, he was getting a little frustrated, a little bit cynical, just losing a little bit of that drive. And he found he started finding it, I could feel him starting to find it. And I can’t point to exactly how that was happening. But he was starting to come to the other side of life, where it’s like, you know, what, I can live through this I can, I can put myself into the situation in my life that it is now and I can live and try to figure out what I can do in that.
Bill Gasiamis 53:26
So what I’ve discovered in my nearly 260 episodes is that it’s universal, what you described is universal, and its cross-age is no barrier. What is interesting, the main common thread is that traumatic experience. Now, in my example, it’s a traumatic experience as a result of a stroke. But I imagine in other communities where we’re not talking about traumatic brain injury, it’s the traumatic experience, the risk to life, the deep injury, the having to withdraw from society for a little while, whatever the reason being, and it’s that traumatic experience, which, which puts everything on the line.
Bill Gasiamis 54:14
And I think that it’s our innate nature, it’s within us to go to that place that you just described as part of our innate way of finding ourselves and then coming out of the hole that we’ve ended up in. And one of the good things about that, for me was that it happened as a result of a brain injury because my brain was offline, and my ability to overthink things went away. And I just went to almost instinct, core, deep ancestry instinct.
Bill Gasiamis 55:02
And I did what my gut was telling me to do. And my gut was guiding me. And all I had to do was take action down that direction, I didn’t even cognitively know the direction I was going down. So when I experienced my brain injury, I explained that as my head went offline completely, and even though I was doing the rudimentary tasks of talking, you know, answering questions and, you know, doing chores, and doing all the things that make somebody appear to be normal, and inhabiting the world, normally.
Bill Gasiamis 55:47
My head wasn’t able to do the kind of processing that I had done before 37 and wasn’t able to do it. And as I never, I never knew where to go. I never knew how to go there. I didn’t have the intellect, the intelligence, the philosophical understanding, the deep. The deep study from my past to draw on just went there. And that this is the result of that I came to be in this space from going to a place where I had no idea where it was or how to get there, there was no roadmap, nobody told me to go there, just that I just ended up there.
Bill Gasiamis 56:32
And what’s great about having a brain injury at such a young age, is that if you get away with it, the damage is not catastrophic, you have the opportunity to gain that level of wisdom, at such an early age, and if you live another 70 years after that, that will make that can make for a potentially unbelievable existence, distance, and a massive impact on the planet. And I’m grateful that I went through what I went through at 37.
Bill Gasiamis 57:17
Because I felt my life wasn’t leading to anything particular. Particularly important. And those seven, my family was loving, and I was in a good relationship. And my kids loved me, but I was terrible to be around. Because I used to bring more problems. I used to take it out on my kids. I used to be angry, I used to yell and scream, I used to be one way. There’s only one way, my way. And all that stuff had to go away when I had to go to this place of how do I redo me? How do I be me? How do I discover how to move forward without my head?
Bill Gasiamis 58:01
And it’s making for an amazing it’s foundation for an amazing another 10 20 30 years ahead. I’ve done 10 or 11 now. And that’s resulted in a podcast, a book, a coaching course all things that were not possible before for me to develop and be a part of and deliver and put out there and offer to people. Your background, your particular background interests me because of your Japanese heritage.
Bill Gasiamis 58:45
And I know the Japanese have a particular interest in the gut. And they have a description of the gut, which is hara. Can you give me a bit of an insight as to what if any of your traditional sort of Japanese heritage and upbringing and culture and how that has helped to shape your journey into this space? And also, what about the gut is important in Japanese culture?
Yuji Oka 59:23
Yeah, you know, the Eastern culture generally has a very strong tradition in body-mind kind of things, meditation, yoga, these are all different from Western culture, which deals more with that higher level thinking philosophy. You know, there’s a practice that happens in other words, that whether it’s a painting in ink painting or something, you’re trying to put a little bit of your internal Energy and flow into marking your work, as opposed to just what you achieve on the outside.
Yuji Oka 1:00:08
So definitely has influenced me, you know, it’s not the direct connection I was born here in, Ottawa, and my parents were immigrants. So it’s not direct, but I feel like, culturally speaking, I think there’s just this kind of game is kind of through line that happens. But all that discussion of like hara and stuff is all about working with the perceptions, the energies, you know, like, in the east, you call it energies and stuff like this.
Yuji Oka 1:00:40
That, it’s just basically what you feel inside your internal experience, you know, the flows that you feel, and just things are always circulating inside of you all the time. And that tradition of looking at things is very related to body and mind. And it relates also pragmatically, to the methods that you use. So instead of working with lots of machines and stuff for working, from the point of view of functional exercises, you’re first starting with things like bodywork, massage, meditation, meditation is was huge.
Yuji Oka 1:01:23
These are things that, again, are ways that are part of your tools, when you’re starting from that kind of mindset. You’re not just working with medications, and, you know, exercise routines and things like that you’re working with things where you’re looking inside yourself in trying to gain a grounding self-awareness of what all this is about.
Bill Gasiamis 1:01:56
When you come across somebody new to work with, or somebody comes across you and approaches you for work or support, I’m not sure what you’d call it, perhaps it’s not work. It sounds like it’s, you know, feel like it’s work. It sounds like it’s just what you love to do. What’s the process? Is there any evaluation process? How do you assess the person that is coming to you and saying, I’m struggling with this? I’ve experienced this and I need some support.
How do you deal with pain? – Yuji Oka
Yuji Oka 1:02:31
Yeah, well, you know, it’s exactly what you said earlier. It’s like, it’s all interlinked, you know, a person’s whole life history is interlinked with everything. So, you know, the, the process just really just starts with talking, you know, as we’re talking, you just find out how the person thinks, how they feel. And in the process of doing that, you learn so much. I had a woman once from Mexico, for example, she had complained about a bad back.
Yuji Oka 1:03:01
And, you know, instead of going to treatment, the first thing I asked her was now, how does she deal with pain, she had such interesting things to say she said, this is how I deal with pain Yuji, I feel pain. And then I grit my teeth and I don’t say anything to anybody. Then I go home, and I go about my chores, and I do it.
Yuji Oka 1:03:23
And then right around evening time, I’m washing the dishes or something, and I just scream. And you are just knowing that defined everything for me, like it wasn’t about like, oh, you know, your lower back and your distance. First, I just realized, okay, so you’re the type of person when you feel pain, she presses in and represses that pain, and she just, no, she doesn’t communicate it at all. And that’s the first thing you have to learn, you have to learn that your pain isn’t met like you don’t ignore your pain like your pain is a signal right off.
Yuji Oka 1:04:01
And first thing you have to do is not like hold it and like, keep it inside, you’ve got to, you got to immediately start to figure out how to release and stuff. So it’s things like this, like inflammation that comes around from lifestyle and the way that you approach pain, you know, she was a very proud person.
Yuji Oka 1:04:17
And she was like, no one’s gonna ever see me feel pain. And again, that was more a part of the therapy initially. And so you can learn a lot from just talking to people and finding out their way of going about things about where they’re going about life. And by doing that, you kind of see how they might be treating their own body.
Bill Gasiamis 1:04:38
Interesting. If they’re not expressing how the physical pain manifests. I imagine they’re not expressing how their emotional pain manifests.
Yuji Oka 1:04:51
That’s correct. I had another woman who was from Brazil. She was the grandmother of the mother whose child I was working with and, you know, she was like, I noticed that she was in the kitchen, she was having trouble lifting replace, she’d have to hold up bread. And I said, oh, we’ll take a look at you. And because she only spoke Portuguese, her daughter had to come in and sort of translate everything I was saying.
Yuji Oka 1:05:16
And she had to, during this time, the daughter was realizing, oh, my gosh, I never realized my mom had pain on a scale of one to 10. She’s like, I haven’t nine pain. Letters, like you, never told me this, what’s going on? And she, and I told her, you know, every pain that you’re not saying is a secret, you’re holding the secret, you’re holding that secret. And that secret is something that is something in when you’re already saved.
Yuji Oka 1:05:49
That’s something you told me. And a few sessions later, you know, she was getting physical releases and stuff that I did learn plus the process. She says, usually, I have a secret to tell you. And I said, What is it? And she said, You know what, she had come from a line of doctors, and her aunt had died of ALS. And she was afraid she had ALS. And she was so afraid, she didn’t want to tell anybody. She didn’t want to tell, she didn’t even want to tell herself. And so when she had a pain she did, she said, Oh, this could be ALS.
Yuji Oka 1:06:26
And it was so I’m just going to ignore the pain is going to not pretend this is the kind of stuff it’s its secrets and pains are like that every pain in a story has something that’s connected to it in terms of your emotion, your history, you know, the way you handle things. And as you start to learn about that relationship that you have with the pain in your body, that’s when you start to understand, okay, this is what I’ve been, or this is what I am. And now to get myself out of this situation, it might I might have to do things differently.
Bill Gasiamis 1:07:02
I imagine that not attending or giving the pain, any airtime is a problem. But also, perhaps giving it too much airtime is a problem. Tell me about that.
Yuji Oka 1:07:17
Yeah you know, the pain can be treated like an enemy. And, you know, so either you, you suppress it, because you don’t want to know about it, or you don’t want other people to know about it. Or you start to get into a conflict with it, you start to feel like are this pain you, you start to vent, you start to read, you start to complain, you start to you, you go, you know, you start to cry at the garden, United’s there’s one person who told me that she said, You know, God, why’d you do this?
Yuji Oka 1:07:57
You know, like, there’s this whole thing that you can get into this relationship with pain that can make you feel like a miserable person because you just focus on pain, you don’t know what to do with it. And, you know, you have to come to a situation where, you know, as hard as it is, you have to understand the pain is not just in an incoherent signal. It’s something your body’s telling you.
Yuji Oka 1:08:22
There needs to be some adjustments, something can be done about that pain. It’s not just always about popping a pill, there’s something that you have to do, do you have to relax? Do you have to like give yourself time do you have to, you have to look inside that part of your body. And sometimes you have to ask for help. There are all sorts of things that that pain is telling you. And you have to come to terms with that and realize this is like a terrible thing. But there’s there is a meaning to it. It’s not like it’s not senseless. It’s not just all sound, sound, and fury, it’s telling you something, there’s content.
Bill Gasiamis 1:08:59
Yeah, content, and then also the pain might be telling you that you have to attend to something emotionally, mentally, physically, but also you might have to get help from the medical profession.
Yuji Oka 1:09:11
Yep, there’s nothing here that, you know, everybody, there’s all parts of the puzzle that you have to do. I added a finger to see this, this is a finger that I ran through a table router. It’s like you know, when I hit it just went like this and think I the nerves could run down the side and the top here, but you know, when I was doing that, I looked down at it. And I was in the emergency room and I was like, I can’t move this.
Yuji Oka 1:09:38
There’s no minor thing that I can do, like, you know, and they told me that the ligament had separated from the bone. That’s a medical thing. Don’t you know, no matter no meditation or anything is going to do that? You need that tenant attached. And this is the pulley system and that’s the way it works. So for sure. You know, there’s nothing here that’s non-medical that isn’t a polemic against medicine.
Yuji Oka 1:10:00
Yeah, there are things that medicine does well. But there are some things that it misses. And as you said, I think it’s not well equipped to deal with the, the questions that, you know, that we can deal with, with bodied men. How do you feel what, you know, what’s your strategy for the pain? What kind of environment do you need supportive environment do you need for your human process?
Yuji Oka 1:10:21
You know, sometimes when you go into hospital is the absolute worst place to feel comfortable to, you know, be and you know, it’s so intimidating and so sterile. And so, you know, they do things, amazing things happen. But there’s also recognition, I think that they’re starting to see that, you know, they need this ecology.
Yuji Oka 1:10:44
And I like to call it an ecology of people. It’s you people who are close to you, your caregivers, your therapists, but other people, other things, your environment, everything, it all comes into play when you’re dealing with things, you can’t really, you have to find an environment that and whole ecology that works for you.
Bill Gasiamis 1:11:02
Yeah, it’s interesting with the medical professionals, they like motor mechanics, there’s the motor mechanic that likes to see you maintain your vehicle, when you bring it to him, or her for a service. All it needs is the oil replaced, you haven’t, you’ve paid attention to the tires, you know, you haven’t run it up against the wall and scratched the heck out of it and had panels missing, you’ve attended to it and he’s happy to see you turn up and he says, well, all while the cars looking great.
Bill Gasiamis 1:11:34
All we have to do is fix it for you, it’s gonna cost this much see you at the next service. And then there are those other motor mechanics that can’t wait for somebody terrible at looking after the car to turn up because they’re counting the dollars again, and we’re going to charge him for this. And I’m going to charge him for that.
Bill Gasiamis 1:11:49
And we’re going to charge for that. Those doctors, they exist in both those people exist in both worlds the medical profession and the automotive profession. And I feel like they’re the answer that’s within them. It’s not part of the training, the training for a motor mechanic is not to make sure that their clients will look after their cars, when they’re not at the mechanic’s workshop, right? Their job is to take the faulty part out and replace it with a new part.
Bill Gasiamis 1:12:26
It’s your responsibility to bring the car to them in as good condition as possible so that they can spend the least time money and effort in restoring it and getting back to you. So that it’s safe. It has served its purpose, you know, the doctors have the same role you go there, they expect you to do all the work to keep yourself fit and well, and they will fix you when they can. And yes, some doctors will go, Ah, yeah, well, I get paid if I do surgeries, why don’t we just take that out of you?
Bill Gasiamis 1:13:00
Or yeah, why don’t we replace that? Or why don’t we fix this part of you that you don’t like, some doctors will do that. But none of them are going to send you home and say, Okay, now when you go home, meditate on your pain, your suffering your past traumas. And make yourself feel better so that you bring to me a better vessel of yourself when you visit next time that no one’s going to do that. It’s not their job, it’s our job.
How the podcast came to be
Bill Gasiamis 1:13:26
Part of the thing. You asked me earlier about how the podcast came to be before we started the interview. Yes. And part of it was because I needed to share with people, the things that I learned that helped me when I went to hospital. Again, this was instinctive. I’m reflecting on it now nearly seven years after my brain surgery and talking about it in this manner. But I didn’t specifically know that I was doing it at the time when I went there, I made it my decision to tend to bring the best possible physical, emotional, and mental version of myself into the operating theatre before surgery happened.
Bill Gasiamis 1:14:06
Because I knew that the surgeons, just dealt with whatever lump of meat turned up that day that was going to be on the table. And if I wanted to ensure that they had as good a job as possible, I knew if I wanted to make it just I wanted them to do nothing other than brain surgery. I didn’t want him to worry about my blood sugar, my blood pressure, my blood vessels. I didn’t want him to worry about that stuff, just to take out the faulty blood vessel that was bleeding in my head. So I saw I sent them or gave them the gift of the best possible vessel so that they could have a successful brain surgery. That was it.
Yuji Oka 1:14:50
Yes. And I think this is a healthy attitude. You know, it is unfortunate that you know maybe the medicine of the future will change. But you know, Yeah, during the business of fixing things, and, you know, once they’re broken and not trying to keep something in health and you know, for my finger, for example, when I went and you know, I had a choice, I decided to do without just with local anesthetic I didn’t want to go under because I didn’t want to do that. So I was conscious of the whole thing.
Yuji Oka 1:15:20
And it was, as he said, you know I could feel my finger over here, and it was being pounded on. Like, it felt like it was just a piece of lumber, and I was, but you know, they did a good job. And, you know, for what they need to do, they did their thing. But yeah, it you know, it’s not just the surgeries, not the treatments, not the medication, this is whole after thing that needs to happen.
Yuji Oka 1:15:41
And that’s where, again, we’re the person who is undergoing that rehabilitation feels like they’re, you know, that’s, as you said, they bring they have to bring themselves to that process. And that’s where, you know, that person is, is, you know, really comes into before.
Bill Gasiamis 1:16:05
And that’s the hopefully that wraps up the whole conversation that we had, as to how, you know, we move through those phases and those processes and those troubles that we’ve been faced with because of this medical emergency that we underwent. The other part of that, for me, was that I’m good at noticing patterns.
Bill Gasiamis 1:16:28
Sometimes I don’t know what to do with the patterns that I notice that I noticed patterns and that might take a while, what I hope that people get out of the podcast is they, I hope that they pick up the pattern of the last 260 or so episodes of how people have gone about their healing journey, their recovery. And what’s common is that it’s the stroke recovery process is not about listening to one podcast episode and then putting it down.
Bill Gasiamis 1:16:54
Hopefully, the people who are on Episode 262, or 63, I think this is going to be people that are on that have also listened to another 2030 or 40 episodes before this, so that they can pick up the pattern of how people have moved through the journey from the beginning to the phase that they are at now whichever part of the recovery that is. And what I discovered, in, this journey early on was that there was a book to be written that was about the fact that a stroke is the best thing that ever happened to me.
Bill Gasiamis 1:17:36
It wasn’t just my story. And the reason why that occurred, why that became a book is because other stroke survivors say that many, many, many of them, not only stroke survivors, Dobie cancer survivors, heart attack survivors, and so on. And the pattern, once you see it, is impossible to unsee. And you and you might be on the journey of stroke recovery. And you might not have been at the part of the recovery where you can say it’s the best thing that ever happened to you. From a philosophical level.
Bill Gasiamis 1:18:14
Because it’s not the best thing that happens to people on a physical level sometimes, and that’s understandable. And you might have inadvertently discovered the six things in the pattern. But you’re missing four of the things in the pattern. And hopefully, what I’m doing here is demonstrating to people that, the interviews might sound repetitive, right?
Bill Gasiamis 1:18:41
But we know that mastering anything is just repetition, after repetition, and then getting nuanced differences and improvements all the time. And then honing the skill and honing the skill and getting better and better. Just like you, you started in physics, you applied what you learned in physics, to dance. And now you applied what you learned in dance and physics to the work that you’re doing now.
Yuji Oka 1:19:13
Yes, yes. I agree with your assessment that you know that there are many different voices, we’re all kind of working on the same, same area. And I really, truly believe, again, that there is a universal sort of education process that we go through. And, you know, the path may be different and there might be different, you know, ways that we sort of come about that. But we need to know that for people who are injured, there’s a sort of general evolution that we go through, and that general evolution can give a lot of comfort to people to understand that.
Life as a process of learning
Yuji Oka 1:19:57
It’s not an arbitrary process. It’s not like You know, just things happen. But it’s like, the human body is this amazing vessel that evolves. And you know, the brain is an amazing organ that can regenerate itself. And, you know, it does. So in this, again, it’s a process as a process of learning.
Yuji Oka 1:20:25
And when you get comfortable with that idea, you know, when I work with kids right now, for example, I see that process, so even no matter how severe the situation is, I know that from here, there’s a whole path that extends out to there. And there’s no reason to put an arbitrary cap on that you don’t you just have to live it and keep seeing what unfolds.
Bill Gasiamis 1:20:50
Yeah, your work is done primarily from the United States, where do you base yourself?
Yuji Oka 1:20:58
I’m in Toronto and a studio there called the spiSpiral Movement Center that’s where I’m based. But as I say, nowadays, I travel, and there’s a lot of demand for kids, especially kids with disabilities. And so I go around, and I, I visit families and I work with families in their homes. Right now. I’m in Georgia, working with two children with CP.
Bill Gasiamis 1:21:22
Do you have people supporting you?
Yuji Oka 1:21:26
No, I have a small staff. But, you know, there’s a growing awareness for this kind of approach and work and stuff. And so I think that you know, you know, even PT work is, you know, seven years ago, in the 50s 60s 70s, this is where it started happening. So there’s still a lot to learn about everything. And I think we’re just still evolving. And right now, I feel that this body-mind work is, is on the cutting edge of a lot of that kind of work.
Yuji Oka 1:22:01
The medicine has gone, way beyond the therapy, you know, therapies. And there’s so much to therapy that hasn’t been explored yet. All these combinations of what we’ve been talking about the body, the cognitive or spiritual, the emotional, all of these come into play. And so yeah, I’m not alone. So I feel like there are a lot of people who are interested in that kind of thing. And, and, yeah, this is what’s happening right now. And even the medical field, as I said, is open to my work. And, so it’s a really lovely time for people to explore this kind of area.
Bill Gasiamis 1:22:45
You’re not alone, I interviewed a lady called Anat Baniel.
Yuji Oka 1:22:52
Yeah, I met with her actually at a conference
Bill Gasiamis 1:22:55
Okay. And that’s amazing. So she does similar work to you. She describes it differently, you have a very beautiful, unique way of expressing the kind of work that you do. And I see the similarities in the work that you do with an app. And of course, this type of work has been around for a long time, you know, Moshe Feldenkrais was doing similar kind of work, and perhaps describing it differently, many, many decades ago in the late I think, in the 30s, and 40s, and 50s, and even into the 70s.
Bill Gasiamis 1:23:25
So it’s been around for a long time, I love the idea of the different versions of ways that this work has been described now. And that’s, that opens up the possibility for people who appreciate your way of describing things to understand if somebody is personal if is somebody who is an occupational therapist, or, or a physical therapist, I would love them to get curious about how to apply the kind of work that you’re talking about into their space into their work. So that it’s not just the, the, let’s see, you pick up a cup and put it down, and let’s help you pick up that cup and put it down better.
Yuji Oka 1:24:19
Yeah, you know, I just say this little is that, um, you know, the work. As far as the work is concerned, it’s been around for 1000s of years, you know, again, this whole emphasis of body and mind has been around forever. And I feel like, though, right now, and you know, in this is a very strong part. I want everyone to understand, though, that, you know, I have a very strong background in science and stuff.
Yuji Oka 1:24:46
And for me, and what I think that my work has to offer, the community right now is that, that a lot of times with holistic practices, we kind of think, like it’s just a feeling of vibe that we were putting off, you know, but, but it’s not that is not the case, you know that there are a lot of very rigorous techniques that we apply. And, you know, not just on the bodywork side of things.
Yuji Oka 1:25:15
So for example, for Dylan, you know, you want to change his posture, you want to get rid of his pains, and many bodywork things advanced body mind bodywork techniques that you can do to do that, but even further working cognitively, and working emotionally, there are more modern, more active type meditations, that that we’re developing in, you know, people in the field.
Yuji Oka 1:25:45
So, you know, this is a very exciting time where I think we’re we sort of heard that demand, you know, I, we went through a big exploratory time in the 60s was a sort of just trying different things. But now it’s in a very technical place. And, you know, this is what excites me is that, again, there is a place, in the medical field for this kind of work. There’s just a lot of research and, you know, technical things that we’re working on that I think is also part of the big story right now.
Where to connect with Yuji Oka
Bill Gasiamis 1:26:23
Yeah, fantastic. What’s the best place that people can go to connect with you? And to see some of the work that you do. Are there some online places where they can find you?
Yuji Oka 1:26:37
I do. My adult site is called spiralpraxis.com. And then for my kid’s work, there’s a place called spiralmovement.org. And so if anyone wants to take a look at my work, yes, they can visit those websites.
Bill Gasiamis 1:27:02
Fantastic. I’ll encourage people to do that. I’m going to have links to your website and to Dylan’s story because it’s a very great little video, the documentary there that describes the process that somebody can go through and the outcomes that they can achieve. And I want to thank you for being on the podcast. Thank you for the work that you do, and for giving me your time.
Yuji Oka 1:27:30
Thank you so much for having me.
Bill Gasiamis 1:27:33
Thanks for joining us on today’s episode, I hope you enjoyed the conversation about the mind-body connection with Yuji Oka. Now 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 1:27:54
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. 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. Thanks again for being here and listening. I appreciate you and see you on the next episode.
Intro 1:28:19
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 1:28:36
All content on this website and 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 1:28:59
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Intro 1:29:21
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Intro 1:29:44
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1 hr 31 min
August 07, 2023 Brain Stem Stroke And Locked-In Syndrome | Rev David Hazeldine
Understanding Locked-In Syndrome: Causes, Effects, and Rehabilitation
Brain Stem Stroke And Locked-In Syndrome (LIS) is a rare and devastating condition that profoundly affects an individual’s ability to communicate and move. In this comprehensive article, we delve into the causes, effects, and rehabilitation strategies for Locked-In Syndrome, shedding light on this challenging medical phenomenon.
What is Locked-In Syndrome?
Locked-In Syndrome, often abbreviated as LIS, is a neurological disorder that leaves individuals fully conscious and aware of their surroundings but unable to move or speak. This condition is typically caused by damage to specific areas of the brainstem, which controls essential bodily functions such as breathing and heartbeat.
Causes of Locked-In Syndrome
The most common cause of Locked-In Syndrome is a stroke, particularly in the brainstem or the pons region. Other potential causes include traumatic brain injuries, brainstem tumors, and certain infections affecting the brain. Understanding the underlying cause is crucial for tailoring effective treatment and rehabilitation approaches.
Effects on Communication and Mobility
Individuals with Locked-In Syndrome face significant challenges in communication and mobility. They often rely on eye movements or blinks to convey their thoughts, using specialized communication devices to interact with the world. The loss of physical mobility can lead to muscle atrophy and joint stiffness, further complicating their daily lives.
The Emotional Impact
Living with Locked-In Syndrome can have a profound emotional impact on both the affected individuals and their families. Feelings of frustration, helplessness, and isolation are common. Providing emotional support and creating a supportive environment is essential for enhancing the overall well-being of those with LIS.
Rehabilitation Strategies
While there is no cure for Locked-In Syndrome, rehabilitation plays a crucial role in improving the quality of life for affected individuals. Physical therapy focuses on maintaining muscle strength and preventing contractures. Speech therapy helps develop alternative communication methods, while occupational therapy enhances independent living skills.
Assistive Technologies
Advancements in technology have brought about a range of assistive devices that empower individuals with Locked-In Syndrome to communicate and engage with their surroundings. Eye-tracking devices, brain-computer interfaces, and specialized software enable them to express their thoughts and connect with others effectively.
Caregiving and Support
Caring for someone with Locked-In Syndrome requires dedication, patience, and a comprehensive understanding of their needs. Caregivers play a vital role in providing emotional support, assisting with daily activities, and facilitating rehabilitation exercises.
Conclusion
Locked-in syndrome presents unique challenges, affecting communication, mobility, and emotional well-being. While there is no cure, a comprehensive approach to rehabilitation, assistive technologies, and strong caregiving support can significantly improve the lives of individuals with LIS. By understanding the causes, effects, and treatment options for this condition, we can work towards creating a more inclusive and compassionate society for everyone.
For more interviews on Locked-In Syndrome and related topics, please visit this YouTube playlist.
Note: This article is intended to provide comprehensive information on Locked-In Syndrome to improve search engine ranking. It is not a substitute for professional medical advice. If you or someone you know is experiencing medical symptoms, please consult a qualified healthcare professional.
Rev David Hazeldine experienced 4 ischemic strokes, the last one of which was in the brain stem and resulted in locked-in syndrome.
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Don’t Get Excited But…
Highlights:
01:41 Introduction
15:59 Why bad things happen to good people
24:10 God Faith & Locked-In Syndrome
31:55 An alphabet board and how it works
37:41 What is behind the why me?
42:57 How to ask for forgiveness?
48:15 Why did this happen to me?
53:15 Hardest part of rehab
1:02:39 Don’t Get Excited Butt…
Transcript:
Rev David Hazeldine 0:00
Now some people have been locked in like me, have survived, and they have no faith at all. These are very positive people. And I thought greatly about that. And it’s great to have positive thinking. But positive thinking can’t make your brain reconnect. Otherwise, everybody would be doing it who’s locked in.
Rev David Hazeldine 0:21
And I was told to think positive thoughts when I was locked in. But I must admit I did try it for a good two or three weeks to think positive thoughts. So absolutely no change whatsoever. And one day I just thought David are you even bothering? You know what’s going to happen. So just relax into that. Because what I need to tell you from a faith point of view is the very first seconds I woke up. I believe I heard God’s voice.
Intro 0:55
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 1:07
Hello, and welcome to the Recovery after Stroke podcast. 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 is be a stroke survivor or care for someone who is a stroke survivor, or you’re one of the fabulous people who help stroke survivors.
Bill Gasiamis 1:29
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.
Introduction: Brain Stem Stroke And Locked-In Syndrome

Bill Gasiamis 1:41
In today’s episode, I am joined by Reverend David Hazeldine, who was 46 when he experienced a brainstem stroke that resulted in locked-in syndrome. David has written a book about his stroke journey called Don’t Get Excited But which is available to purchase online via the links that you can find in the show notes. Reverend David Hazeldine, welcome to the podcast.
Rev David Hazeldine 2:08
Thank you.
Bill Gasiamis 2:10
Thanks for being here. Firstly, can you explain to me the difference between a pastor, a reverend, and a priest?
Rev David Hazeldine 2:19
Different denominations, so Catholics are priests, and reverends are a church of England. And pastors are everything else. Baptist minister.
Bill Gasiamis 2:34
Okay. Tell me a little bit about what happened to you.
Rev David Hazeldine 2:37
Well, it goes back to Saturday, November 2, 2019, before COVID was even a thing. And I woke up one morning at 6 am just to pray and then we did have a bit of a strange headache on the lower back of my head kind of extended all over the front.
Rev David Hazeldine 3:03
So I went back to bed, I’ve taken some headache tablets. But I woke up again at about 8 o’clock and the headache was still there, which I thought was strange. So went to get some more tablets down as soon as I stepped into the toilet, I had three really quick strokes, mild ones, which affected my eyesight, my balance, and my right ear.
Rev David Hazeldine 3:34
But it all happened in one go. And as you can imagine it was very serious at that time. And so I staggered back to the bedroom and stumbled over my wife. I said something was not right I thought it was flu or something wasn’t quite sure. But yeah, that then progressed. And it went downhill from thereon.
Bill Gasiamis 3:55
When do you say minor strokes? Did somebody explain them as minor? It sounds like it’s never minor. It sounds like that happened all at once. That sounds pretty major.
Rev David Hazeldine 4:07
Yeah. The consultant for my wife in the hospital ICU unit says she would not be having a chat with my wife that she needs to have about the end of life if were just for these first three strokes, but we knew nothing at the time.
Rev David Hazeldine 4:31
So that minor just be adapting to life and dealing with them. But they wouldn’t have stopped me work and they wouldn’t have stopped me doing things. So we just assumed that I might get better. By lunchtime, I thought maybe it’ll go away. But by lunchtime, I still have the symptoms.
Rev David Hazeldine 4:54
My son came into the room at one point he said Dad what’s the matter? Because I was supposed to be somewhere he was there, too, and everyone was asking after me as a church leader. And so he came back. I don’t know what that was. And I said I don’t know. Something’s not right.
Rev David Hazeldine 5:10
That’s all I could explain. Something was not right my balance was off, I couldn’t stand up properly, and I kept falling over. And I just felt better lying down. So this may sound crazy, but it’s an important story. I watched the Formula One Grand Prix and watched Lewis Hamilton, in Austin, Texas, just the qualifying.
Rev David Hazeldine 5:35
And that’ll become significant later on, I say the rest of the story. But after that, was hoping that things would get better. We didn’t. So my wife rang the NHS or the service here in the UK, or 111, you dial 111 And you list your symptoms, and they give you a rough guess of what it is.
Rev David Hazeldine 5:50
And they said there might be some kind of infection or something because it wasn’t a classic stroke symptom. So she put the phone down and rang for nine because we weren’t getting any kind of response. And because it wasn’t life-threatening, they took four hours to attend.
Rev David Hazeldine 6:13
By this time I started to get heavier and heavier. And my speakers ever so slightly slurring, I didn’t notice it. But, my wife tells me many years later, there wasn’t a bit. But when they came and came in, and they’re the bright color uniform smiles, they juggle my ops test my blood pressure, blood, all the different things.
Rev David Hazeldine 6:39
And they said there was nothing, registering untoward. So they said, We think it probably likely going to be an infection. And they asked them, Why do you think you can get down with to the, the emergency the ER, and she couldn’t even hold me, keep me up balanced. And so I couldn’t even get downstairs.
Rev David Hazeldine 6:59
I just shuffled down on my backside steps and left the church house and the area where I’ve been ministering for three years, in the back of an ambulance holding this paramedic’s hands, and in the journey in the way we had a nice, nice chat. It wasn’t particularly difficult to see things were disorientated. But I was under the impression that it was just some kind of infection.
Rev David Hazeldine 7:23
So we get to the ER and walk into it. And there’s only one time in my life that I’ve been to that er and it was a day before with now colleague that was helping us. We helped get off the street into a house. But he had had a relapse and got in that day beforehand. So I knew exactly where I was.
Rev David Hazeldine 7:44
And as I entered the room, the chat for the admin desk said, Are you David hated them? Some of my wife, Sam had grown up to kind of guess, in our paperwork. And I turned around to him. And I wanted to say, Yes, that’s me. And I thought I was saying it but nothing came out. And then suddenly, I had always a wet sensation on my left side coming up through my mouth.
Rev David Hazeldine 8:12
And I thought, what is that? And then I remember just blacking out, but the very last thing was when I hit the wheelchair seats that the paramedic had brought behind me. And so yeah, that was the last memory of what life was like beforehand.
Bill Gasiamis 8:31
Yeah. So the first three little strokes or minor strokes, as they call them, were caused by a clot what were they caused by?
Rev David Hazeldine 8:44
Yeah, it was like just an ischemic stroke. And in my understanding the clot is single. And they got larger and larger and affected, more more areas. So what made me collapse in the ER was the fourth and final stroke, which was the brainstem stroke. That was the massive brainstem stroke. And that’s what changed the game completely.
Bill Gasiamis 9:16
The brainstem stroke happened after your hospital stay when you got to the hospital when did it happen?
Rev David Hazeldine 9:27
It happened in the ER I’ve been in the ER room for about one minute. So I do say to people in jest if you ever want to have a stroke, have it in the ER that’s the right place because according to my wife who wrote a chapter in the book that I’ve written, said all hell, let’s say all heaven being a Christian broke loose.
Rev David Hazeldine 9:50
So she has pushed out away and I’ll suddenly put on the trolley and my talk was cut off my trousers were cut off and they were administering and all the things you need to administer. And the chase all across London to various hospitals for various procedures, trauma juice that slot is the thrombectomy.
Rev David Hazeldine 10:14
But ultimately that thrombectomy failed. And so they said, we want to send you to a hospital in London, George’s, which is just over on the west side of London, so we had to rush back in. But I wasn’t aware of this. And she was falling behind in a car.
Rev David Hazeldine 10:34
And yeah, they admitted me to the neurological ICU. And I was completely unconscious for an entire day. And I woke up on Monday morning, to discover my eyes open. And I thought, you know, obviously I had, I thought it’s going to be some kind of infection. But I found out pretty quickly, it wasn’t.
Bill Gasiamis 11:04
So you had a brainstem stroke. And that was the one that caused all the challenges, all the problems that you’re dealing with now is that the one that you’re recovering from the most, so to speak.
Rev David Hazeldine 11:26
The funny thing is, that is true in one sense that I’ve had to recover, all for my limbs, my breathing, my mouth, my tonsils, everything from that sort of covering, and the clot or reconnected.
Rev David Hazeldine 11:44
But the one thing that gives me real problems is my left foot. that direct connection that net then is a needed operation, which we’ll come to later in the story, I’m sure. But now it’s the balance.
Rev David Hazeldine 11:58
And it’s been diagnosed for me now as multifactorial. In that balance and tolerance, bit of a mouthful, with a mouth like mine. So because I feel like my head is like the English Channel or the Atlantic Ocean. I just feel like I’m on a sea boat at sea all the time. And I’m learning I’m learning to disbelieve that and trust, the wait sensation that I feel in my feet, which is a very strange way to live, but it’s becoming natural.
Rev David Hazeldine 12:32
So I will say that those two are there for me, my balance to the greater ones, the areas minor and the eyes. Yes, it does make a vision look a bit worse, much worse. Because there’s a blank spot in my eye.
Rev David Hazeldine 12:48
There’s just nothing it’s not a gray spot or a black spot. There’s just literally nothing in sight loss. They call it but that has improved slowly. So much so that I’m going to be starting to drive again in the new year. So at the process level and driven since that day in November 2019.
Bill Gasiamis 13:12
How old were you at the time?
Rev David Hazeldine 13:14
I was 46. I’m now 50.
Bill Gasiamis 13:16
Okay. In your career as a reverend, how long have you been in that role?
Rev David Hazeldine 13:23
I was 10 years old. But before that, I was involved in church stuff as a volunteer since I was about 15. So I’ve been around the block quite a long time and moved forward in quite a few churches, doing different outreaches and ministries, working for that local council as community work. But always engaging people with a passion, always trying to make community life better always trying to help people. So that’s all about service.
Bill Gasiamis 13:53
Bruce, pastors, and reverence are front and center when it comes to people passing away funeral services, or helping people who are sick, unwell, etc. Yeah. And they’re usually doing it from the front of the front of the church, behind the pulpit. They are usually the ones who are rallying the community to come around and support somebody who’s doing it. Who’s doing it tough? In your life of 46 years before the stroke, did you ever consider that that person who needs help one day might be you?
Rev David Hazeldine 14:40
No, I mean, that’s what it cost me this strange thing. My whole life has been about helping people. We spent six years doing lots of social action, and social outreach, just trying to help people with medical things with their income with it. job, I see these getting jobs, furniture redistribution, cleaning houses, access to benefits, all that kind of thing.
Rev David Hazeldine 15:11
And then suddenly there I am completely paralyzed. And suffering locked-in syndrome, am I every need, has to be in there even what I might eat want to drink the screen or somebody else. So, yes, it was a real real change, they were quite ironic. And, on the first Christmas day, I was still locked in at this stage.
Rev David Hazeldine 15:36
And I remember thinking to myself, so this is where it’s like being in the hospital on Christmas Day because I’ve made it my business every day or every year on Christmas Day, to pray for people who are not around the table with their family, you know, armed forces, people in the hospital or nursing homes, that kind of thing.
Why bad things happen to good people
Rev David Hazeldine 15:55
And I’ve always tried to mean it from my heart, but always felt quite shallow. But you understand, but I knew as you were writing that I felt passionate about doing it. And I just said a lot of the things and this is what it feels like when you’re that alone.
Bill Gasiamis 16:13
You’re your job gives you a more philosophical approach to life, I imagine. If yes, in one perspective, you’re probably philosophizing while taking people through their hardships while they are finding it difficult. You then find yourself in a position where you have to self-philosophize, and you have your way through.
Rev David Hazeldine 16:43
A really good question and part of several stroke forums on Facebook. And one of the biggest questions there is why did this happen? I don’t see this, what have I done to deserve it? And it is a big question. But if I’m really honest, it never really bothered me why bad things happen to good people and why good things happen to bad people. I, my faith was born out of being a 34-year-old.
Rev David Hazeldine 17:09
I have had one or two significant encounters in my faith with God as I believe him to be, and that shaped my life. But I think around the time I was thirsty, I thought I better think about suffering. Because many people have questions. I didn’t have any questions. I thought I leave it to God, he’ll sort it out.
Rev David Hazeldine 17:35
And he’s in charge of everything he knows. I’m not bothered about it not not in terms of people suffering, but I’m not bothering the office for answers and questions. But I then started the next 10 years studying it or, as you say philosophizing about it, reading up on it, citing the Bible, and listening to sermons and listen to YouTube things. So I come to peace with what I believe to be the arts of the suffering.
Rev David Hazeldine 18:02
So when it happened to me, I can be honest and say, I wasn’t bothered about it. I was I know sounds strange to listeners. But from a faith perspective, as a Christian, yeah, the whole Christian faith is about living, overcoming life. Overcoming all difficulties, no one life is perfect.
Rev David Hazeldine 18:25
Bad things always happen. But being a Christian, you have a way of dealing with it and a mindset of how to deal with it. Because you understand the face structure of how the world works. My ultimate belief is that all these things happen because God’s revealed his nature to humans.
Rev David Hazeldine 18:44
And there are one or two stories in the Bible where good people doing good things, suffer for indiscriminate reasons. And through it all, they become more blessed at the end than they were at the beginning. And I’d say that’s what’s happened to me. My wife’s job, our house, children, where we live, where we were driving, or doing who we know how I help, how we aren’t, everything’s got better.
Rev David Hazeldine 19:09
So I’m not trying to be cheesy or plastic. I don’t try and put a spin on it. These things are just happening around us. So I don’t have a problem with that I feel strangely. I feel quite privileged. That goddess, I feel God has chosen to reveal, as I say his mercy to me because I’ve been saved in such a terrible circumstance.
Rev David Hazeldine 19:36
One of the difficult things my wife had to hear on that day on Sunday when I was in my coma was when she had to hear the console said, your husband’s not going to make it. If he does, either, there’ll be a 10% chance of survival, and that survival will look like 24/7 care. It was In Institute, and they probably won’t reach that time and probably died from a stroke, which we expected next few days because he was so weak fighting his chest infection.
Rev David Hazeldine 20:11
You know, if you lie down for a long time, you’re not breathing well. And you get fluids, infection, your lungs, and then you get just infections as well. My lungs are paralyzed, my diaphragm was paralyzed, I wasn’t swallowing, I was paralyzed, I had to have all my mucus, and, my throat sucked out like six or seven times a day. So as a victim straightaway to these different medical situations threatening me.
Rev David Hazeldine 20:41
But after seven or eight days, the chest infection went away and I was moved to a hospital Lewisham in London. And I gradually began to become more and more stable and whereby surroundings. So when I obviously when it came out, after 1010 months, we’ll come back to the slides change to a physiotherapy Institute. But when I came out of that, after the whole journey, after 10 months, I was desperate to find out about locked-in syndrome, desperate to find out how many people survive.
Rev David Hazeldine 21:19
And I can remember my wife explained to me, in the first few days of consciousness, what happened to me. She kept using this phrase, but I couldn’t find anything about it. So when I came home, I wanted to find out about it myself. In the space of a few months, I managed to find around 10 to 12 people who had been locked in and had survived like me.
Rev David Hazeldine 21:45
But that was in the age of social media. And that was 12 people in the world. So that wasn’t for people in the UK or your nation. It was the topic in the world. And I was stunned by that. Throughout my whole period in the hospital, I had consultants nurses, and doctors saying, this is very surprising, what’s happening is wonderful. They couldn’t say it was a miracle. They couldn’t say, you’re going to get better.
Rev David Hazeldine 22:18
But they kept saying to me one thing was you’re to run a book. And the other thing was, this doesn’t happen to many people. Well, what they meant was, it doesn’t happen to hardly anybody at all. In the UK, I found out that at any one time, about 400 people are suffering from locked-in syndrome.
Rev David Hazeldine 22:39
But all of that’s maybe one every four or five years, like me, will survive. And then even more years than that they’ll survive to a standard like I am. So yes, it is quite a sobering thought when you think about what you’ve been saved from. That’s why I kind of think about mercy. And I think how merciful I’ve been, I’ve been at the mercy of experience, and I believe most football has been.
Intro 23:08
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, and doctors will explain things but, you’ve never had a stroke before, so you probably don’t know what questions to ask.
Intro 23:33
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 23:52
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.
Brain Stem Stroke And Locked-In Syndrome

Rev David Hazeldine 24:10
Now some people who have been locked in like me, have survived. And they have no faith at all. these are very positive people. And I thought greatly about that. And it’s great to have positive thinking. But positive thinking can’t make your brain reconnect. Otherwise, everybody would be doing it. Who’s locked in? And I was told to think positive thoughts were not locked in. But I must admit I did try it for a good two or three weeks to think positive thoughts.
Rev David Hazeldine 24:43
So absolutely no change whatsoever. One day I just thought even Why are you bothering me? Do you know what’s going to happen? So just relax into that because we’re our knees tell you from a faith point of view is the very first second If I woke up, I believe I heard God’s voice now when people pray, they think that’s natural.
Rev David Hazeldine 25:07
Well, as soon as you say, I heard God speak, that’s like Nutter crazy. He’s weird. He’s going to block some people somewhere around the world and create a disaster. But I must admit since I was age 50, my whole life of service has been founded on hearing God reading the Bible listening to him, and just understanding his heart when he wants to people.
Rev David Hazeldine 25:31
So, I believe that that happened, the moment that I woke up, you know, when you wake up in the morning, and your eyes are closed, and the darkness you can see is inside of your eyelids. And you say, I’m awake, I will now open my eyes. And it’s a split second of thought. And at that moment, I believe the words he said to me were, you’re going to be okay.
Rev David Hazeldine 25:54
But that wasn’t me saying, I’m gonna be okay. I didn’t know anything. I thought I had an infection. That was it. But when I open my eyes with this, I’m gonna be okay, wringing my hands. It was such an indelible phrase that I didn’t make up. And it stayed with me from that day to this. I couldn’t believe it. I didn’t have to think positively about it. It’s like a, how do you describe it as like a flowing river?
Bill Gasiamis 26:24
It’s a fact.
Rev David Hazeldine 26:26
I’m just conscious that many listeners will have no faith at all, many will be spiritual and will be open to these kinds of things. But I can just say what happened to me. I think I know lots of people.
Bill Gasiamis 26:37
I think many listeners with no faith, I think, understand the concept that you’re describing. Because the concept is not. It’s not a religious concept. It’s a human concept. And I was raised as a Christian, I don’t go to church. But it’s great. Well, my background is Greek Orthodox. And when you go to church, a Greek Orthodox Church, they speak in ancient Greek.
Bill Gasiamis 27:09
And I don’t understand it. And it’s really difficult to go to church and get excited about learning scripture that way. And if you haven’t done it by the age of 49, you know, nothing is calling me to go and learn it deeper or further. And I know enough that, you know, I can appreciate the idea of God. So when I had my strokes and brain surgery, I had the same feeling of, no, I’ll be okay.
Bill Gasiamis 27:39
I never thought about what I wanted. And I’ll be okay. Regardless, I never thought about whether I would walk again, I never thought about the challenges I was going to have to overcome or face whether I’d work again, or I never thought about any of that stuff. It just did not enter my mind. And I thought about death, and the fact that I might not be around. If it happens again, it might be the last one.
Bill Gasiamis 28:04
And it happened three times. And then I had brain surgery, and then it wasn’t the end. And when I, when you explain that you had God talk to you, I had a similar experience. But I kind of describe it as my internal self talking to me. And when people listen, when when I chat to people on the podcast about what I believe about God, or what God is, I think God is me.
Bill Gasiamis 28:34
I think I’m in God, or God is in me. And, there’s not a separation, like the church does. My particular church and other churches externalized God from me, the person. And what I always struggled with was, if there’s a problem, I pray to God.
Bill Gasiamis 28:56
And no one ever said to me, God is within you is you is part of you, in a way that I would understand that what I’m doing is telling, having faith in myself, which other people describe as having faith in God. And I think that they’re not separate. I think they’re the same.
Bill Gasiamis 29:18
And it’s my weird way of accepting and understanding God, the God that other people have accepted and brought into their lives, and pray for all their blessings. I kind of have internalized that and made it one with me. And I don’t go around telling people that I’m God on them. But do you know what I mean?
Rev David Hazeldine 29:46
Yeah in Christianity. There’s a massive mystery written about in the New Testament, where when you put your faith and you repent of your sin, put your faith in Christ is not just a second chance is actually what happens is you are born again there’s that phrase that people look out for is a verse from the Bible, Jesus said, You shall be born again. And what it means is your spirit man is born again.
Rev David Hazeldine 30:13
And a God comes to live in you the mystery, the Bible talks about as Christ in you, and we are in Christ. So yes, I understand how you might use that language of internalizing things. I can just say, from when I was 15, I used to be quiet I’ve got two ears, and one mouth, I just thought, I needed to listen more like talk.
Rev David Hazeldine 30:35
And if God is real, then he wants me to know him, and I must listen. And it’s just a logical thing. It wasn’t a blondie revelation when they just grew up inside me throughout the years. So this kind of experience happened. And I heard what you know, in my heart, my soul what I believe God has said to me, and I knew wasn’t me saying it.
Rev David Hazeldine 30:58
So when I opened my eyes, I thought my thought was, why, why do I need to know that? I’m gonna be okay. What is not okay? What’s the matter? So I see all around me, the surroundings of a hospital bay curtains drawn, and I hear the hush tones, people around. And suddenly those two nurses Australian nurses Speech and Language Therapists.
Rev David Hazeldine 31:22
And they said, David, we’ve been sent in to try and make contact with you. Now, that is, like a phrase in aliens would say, we’re here to make contact with you. And I thought, why do they need to make contact with me? But instantaneously, because I didn’t reply. I knew something wrong with my mouth, my throat, my speech, my voice.
An alphabet board and how it works
Rev David Hazeldine 31:47
And they said to me, you’ve had a brainstem stroke. And you’ve got locked-in syndrome. And we want to explain to you about an alphabet board. They then spent the next 10 minutes explaining to me what an alphabet board was showing me at the same time, and how they were going to use it for me to communicate, they asked me to spell out the words Yes, spell it the worst, no, get used to blinking.
Rev David Hazeldine 32:20
And then they said, right now we’ve done that. Do you have anything you’d like to ask? So that’s a time when anybody should say, I love my family. I’m not going to die. How bad this is. My question was, is Lewis Hamilton the world champion? Because I wanted that. I had such a deep calm of nose words, I’d heard from what I believe who I believed God to be that I was going to be okay and although I didn’t fully understand what locked him was fine.
Rev David Hazeldine 33:01
I knew I couldn’t move anything as I tried to arms, and nothing worked. And that is one weird sensation. And I felt like I was floating. I couldn’t even feel the bed underneath me. The sheets on top of me, all sensation had gone. All my nerves had been cut off and my brain was laughing.
Rev David Hazeldine 33:20
I set my eyelids, I couldn’t turn my head. I couldn’t, I couldn’t even my head clicking sound on my lips or fingers, or I couldn’t do anything indicate to anyone. So when I did this full sentence, we took an ordinate amount of time to say in fact, I did give it a few short tries to do short on versions. And they went back to my family and said, Dave is talking about a car, and Louis and my wife popped up and said, Well, we’ve got a friend called Lewis.
Rev David Hazeldine 33:52
And we used to have a car. We used to have a car with a registration that had the LWS. That’s what we used to joke about. That’s Lewis’s car. What is he talking about? So the way they came back in and said, David, we’re not quite sure what you mean. So I thought, oh, no, I’m gonna have to spell Lewis Hamilton World Champion champion. That’s gonna take ages and it took about 15 minutes to say it.
Rev David Hazeldine 34:15
But then they came back to the family they said they were asking if Louis amateur World Champion and my dad then burst out laughing. And he said That’s my David. So that was what I didn’t realize at the time I feel really stupid saying that. I should have said something like, I love you. I believe her from God.
Rev David Hazeldine 34:34
I repeat Forgive me, okay, because they were very tearful. And my wife spent the whole week I was nice to you, in your complete meltdown and brain fog and confusion, and been told by nurses he’s gonna die. He’s gonna die. And my kids are brought in to see for one last time, which I do not remember.
Rev David Hazeldine 34:57
They were in tears. Well, it was the world Just go slow for them. But the thing I said was to lose helmets and world champions. But that was the best thing I could have said because it meant I had a memory that meant time. Yeah. And our full accomplishments are there. They knew right there.
Bill Gasiamis 35:18
Yeah, you’re intact. It’s kind of like a sign, a small sign. And that’s a sign when it’s such a small thing. It is a big thing for the family is huge. And like a dad. So yeah, there’s my David, you know? Everything was going to be okay. It seems like you had what I would describe as a deep knowing a deep knowing, yes, you were going to be a cat. So what I had I had a deep nothing. That’s a really good phrase.
Bill Gasiamis 35:54
And that is such a powerful thing because there’s nothing that you have to do about it. No, deep knowing is something you do not have to do anything about, you just know, it’s going to work out, and things are going to improve. Things are going to change, no matter what you’ve got ahead of you things somehow are going to take a turn for the better, in some way, shape, or form. You don’t know what that looks like. But you just have it. Yeah. Knowing it’s such a powerful state.
Rev David Hazeldine 36:23
Yeah, I think you’ve taken the words right out of my mouth. When writing the book, wouldn’t get excited, but I’ll tell you the story behind that because of this chat about it in a bit. Yeah. Because of the recovery. And that’s the title of the podcast, right? But it Yeah, it was just so solid in my heart, that I was gonna be okay, but I didn’t know how I was gonna be okay.
Rev David Hazeldine 36:49
Would I have some kind of biblical instant miracle? Or would I gradually get better over time? Or were they gonna be one or two quick things? So actually communicate your sound through the alphabet board? Are we going to, are we still going to Cypress because we put a holiday to go in July?
Rev David Hazeldine 37:09
And I’d had this stroke the strokes in November, and COVID wasn’t a thing. So I couldn’t quite grasp it yet. How bad was I What’s going to happen? But that slowly revealed its time. So my discovery for the book was how I dealt with coming to terms with it shouldn’t take a very, very long time to recover. And there’ll be many rocky roads to follow. But ultimately, you’re going to be okay. And now, so one thing that got me through everything?
What is behind the why me? – Rev David Hazeldine
Bill Gasiamis 37:44
Yeah. Excellent. Let’s go back a little bit. You said earlier, that two good people indiscriminate, bad things happen. And then some of those people will say, Why me? What do you think is behind the why me? I’ll, I’ll give you a sense of some of it. I have an understanding that some of the why I am based on religious guilt.
Bill Gasiamis 38:10
God has punished me, there’s a little bit of that, that you hear from people, they go, yeah, they’ve picked up somewhere in the extreme experience through religion or church or through stories that have been passed down from family members, that God is going to punish people who do the wrong thing.
Bill Gasiamis 38:32
And then somebody ends up having a stroke, and they automatically believe that God is punishing them. So what do you think is behind the why me? And then how do we do the God is punishing me thing?
Rev David Hazeldine 38:52
There are two things I think what’s behind it as a cry. It’s, it’s not fair. I think that the amazing freedom I’ve had from setting mercy and understanding what mercy means is that I don’t deserve mercy. But I receive mercy. I don’t deserve a blessing. I didn’t deserve healing. I don’t deserve the wife I have. I don’t deserve the kids I’ve got because there’s an understanding of Scripture that and the word go, Man messed up.
Rev David Hazeldine 39:28
And so that DNA was affected, their health was affected, their minds were affected. Their relationship with God was affected and death, we told the human race that death was not a concept when God first created the earth. And so when people say, Well, God made me like this. Well, that’s not true, contrary to what Christians believe in the Bible.
Rev David Hazeldine 39:50
It shouldn’t be that fun. That’s up to you. But I think there will be struggles when something happens that you don’t think it’s fair to you. You’re saying, why not but if you take the Christian worldview that is taught in Scripture. You start from the perspective that everything went wrong. You know, God is good, because he did great well for Adam and Eve for thy mercy messed up.
Rev David Hazeldine 40:13
And so the whole Bible story is a story of how God wants to redeem that now as part of that, human nature is disobedient. So Yes, it is punishment. But it’s not my place to say to someone, you are being punished by God, I don’t know that. So I can think of 567 reasons why a stroke may have happened, to somebody, but I can’t say exactly what we find, all I can say is, I don’t know why I had my strokes.
Rev David Hazeldine 40:43
Because 10 years full of strokes, I was praying about something particular that hadn’t gone the way I wanted. And it is not going away from one, two, or three or four different geographical situations I’ve been in. But since a young boy, I felt that something significant was supposed to happen to my ministry. And so in the book, I’ve written, the first chapter is called, something’s Supposed to Happen. Well, at the end of the chapter, it didn’t happen.
Rev David Hazeldine 41:13
But then chapter two is, so it did happen. And that was the strokes, which, you know, a real curveball. But it all began to make sense. But what I felt God said to me at the time was, some people show their hand too soon, you know, if you’re playing poker, cards, you got to hold on to cars and take the risk.
Rev David Hazeldine 41:32
And when you wait, bide your time, and get the right cars, you then land down at the very end, you get the most value of chips, and you get the best hands. And that’s what I felt God was doing. And he was going to put me in a position where he was saying, wait. And now I’ve got you where, what you, I’m going to do this in your life.
Rev David Hazeldine 41:53
And I’m going to show how much Mercer has in the recovery and the story of it in the place. I’m not going in the podcast, the UN has some radio interviews coming up. And speaking engagement, I’m able to share about where I believe that verse year. So yes, I do feel that people live with a sense of when asked questions sensitive, basic injustice.
Rev David Hazeldine 42:18
I don’t deserve this. But the Christian message, you do deserve it. But the good news is that Jesus came to save us in mercy for what we do deserve. So otherwise, it’s not good. So I do feel that that’s that. That’s what I would say, to some people.
Bill Gasiamis 42:39
Now, I hope that brings something to think about for the people who are experiencing that one of the most difficult things is to be supporting somebody or coaching somebody to get through their stroke recovery, and then to have them feel like they’re being punished for something.
How to ask for forgiveness?
Bill Gasiamis 42:59
And that’s tough. And if and I don’t know if the answer for some of those people who say they have done something terrible that I don’t know about, which is, yeah, which will be common. I’m not sure what the answer is. But perhaps the answer is, to ask for forgiveness.
Bill Gasiamis 43:17
Forgiveness is a general thing that people can ask for whether they asked for it from God or put it out there into the universe to ask specifically from the people whom they feel like they’ve wronged forgiveness is an amazing thing to do. It’s such a powerful thing. Now, I didn’t ask God for forgiveness again.
Bill Gasiamis 43:38
But I did ask for forgiveness. And I didn’t have an actual conversation with the people who I needed forgiveness by just praying for forgiveness from them. I put it out there. And I made it a practice that I did for a little while.
Bill Gasiamis 43:56
And I think I received forgiveness back. I felt like it had changed the way that I related to the relationships that were difficult because of the things that I had done that made those relationships difficult.
Rev David Hazeldine 44:16
Yeah, I think there are so many situations in the Bible where it talks about justice, and for God not to mete out justice will be abhorrent to the victims. Sin affects CMP with lies, and not just personally commits it with people that are committed against you I wouldn’t like to live in a world where there are no police, and we’re enraged if people get off scot-free.
Rev David Hazeldine 44:45
And so God’s God’s punishment is always linked to justice. Someone always deserved it for whatever they’ve done. But if you think you’ve never deserved it, then you’re saying I’m perfect. I deserve things, but we Oh, no, no one’s perfect. I think there’s a bit of a struggle with that.
Rev David Hazeldine 45:04
So if you can accept in your heart, I’m not perfect, I need help. That’s just a wonderful way to come. Come to the NSA, and ask for forgiveness. Ask for mercy. And you receive such wonderful help because the Bible was at pains to say, how merciful and loving gracious God is. But that love also has just a part of it, how can you love someone? If there’s no justice? How can you love your kids?
Rev David Hazeldine 45:34
If you don’t want the best? And How can you love them? If they you let get away with disrespecting you? So it’s just about doing the right thing? How can you love your kids? If you let them do whatever they want to do? I love my kids, I want to give them every single chocolate bar that ever won and every single ice cream that ever wanted. And we’re going to do that no way. That’s harmful because it just won’t be the right thing.
Bill Gasiamis 45:58
I like what you said about justice. And that, you know, people wouldn’t feel good if justice hadn’t. People don’t feel good when justice, when they feel like justice, is not served. And it’s maybe then what encouraged me that feeling is what encouraged me to have to ask for forgiveness. Because I felt like I had done an unjust thing to somebody.
Bill Gasiamis 46:25
And then deep down, I felt like they had not received justice. And then as a result of that, that that set, set uneasy with me. And what I needed to do was make that right, I made it right for me, firstly, by the sound of things, but that also then makes it right for the other person, there’s a win-win.
Bill Gasiamis 46:47
Both people feel one person feels like the unjust actions have been made, right, so to speak. And the other person feels that they’ve been heard or justified or, or, or that I’ve seen that error in my way. And then yeah, sort of settles the feeling in my heart, as you said.
Rev David Hazeldine 47:14
And you see how effective that was. If you were to bump into that person, your attitude different your tone of voice would be different Newton, you may say story, there may be time for restitution, maybe that person has died for some people. But we just have to accept that. When we talk about punishment in the Bible. It’s not indiscriminate. It’s not random.
Rev David Hazeldine 47:37
There’s a chorus, slow to anger, the Bible says I was recently reading a story the other day, they got to God 800 years ago to punish a group of people for some that he wore them for over 800 years. And they still went ahead and did it as a group or group of people. So you know, he is slow to anger.
Why did this happen to me? – Rev David Hazeldine
Rev David Hazeldine 47:58
So there’s no fear of these being indiscriminate is random. You know, love has rules, there is order, there is constraint, there is restraint. But there is the law laid down. This is how the world works. And if you do things wrong, you will be punished. But again, there are many other situations where life is life. Things just happen. And we all have to deal with those two. So it’s not for me to cast aspersions and say, this is why this happened to you. I just don’t know. But maybe one of many situations.
Bill Gasiamis 48:35
I had, I had a bit of a why me moment as well, but not a Why did it happen to me? I had a Why did I survive? And other people didn’t? And why do you think I had survivor’s guilt? Right. So that was weird and strange because, of course, I’d never experienced survivor’s guilt at any time in my life before.
Bill Gasiamis 48:57
But I had to go to theater therapy about that and understand why I felt bad for surviving, something that a lot of people don’t survive. And then it kind of occurred to me that there’s got to be more to the story than just surviving this. You don’t just survive something like this. No, then just go back to regular life and do what you’ve always done, and not learn from it and not support people who have been through something similar and not grow from it.
Rev David Hazeldine 49:29
That’s right, and this podcast is a great way of doing that. Right.
Bill Gasiamis 49:33
The podcast is the result of Why Me? I understand now why because I had to share my story. I had to find people who were like me, that understood me so that I could let them know that I understood them. And then I had to create some kind of a community around us because there wasn’t one it was in the day before.
Bill Gasiamis 49:54
A podcast existed about stroke and It was, it was that? Again, I didn’t know how I was going to do it. But I had faith that I was going to be able to have this podcast and it was going and everything. And that occurred. And, then the why me is still a question, why am I Oh, okay, I know why.
Bill Gasiamis 50:19
Because I have to put out this content for people. And I have to attract people to me, so I can support and help them. I have to make it better for people who have had a stroke because one in four people is going to experience a stroke in their lifetime. And that’s not a statistic that I enjoy hearing.
Bill Gasiamis 50:42
And that means that there’s going to be a necessity for what you do, David, which is raising awareness of a situation in your community where there’s a problem, and let’s bring ourselves Bring, bring us together so that we can all support the person who needs this is actually yeah, it’s kind of how I feel.
Rev David Hazeldine 51:04
Yeah, I mean, if we were gonna move on from philosophy in a second, but I would say, yes, what you’re doing is giving back, you’re giving to people. And that’s the nature grid, you’re demonstrating the giving heart of God, you may know it, you may not know it, but that’s why doing.
Rev David Hazeldine 51:22
So an even greater purpose behind your podcast is not just the podcast itself, but it’s what it reveals about God, he’s always trying to reveal Himself to us, he can’t turn up, you know, because or die from his sheer glory. But he did that once in the flesh in Jesus and wrote a book about it.
Rev David Hazeldine 51:44
And so the podcast has so much greater significance in the universe, as it were. But I think these things are where do you have faith? I think one of the key things to my recovery was that sense of purpose, I knew something good within Canada gonna come out of this. And that purpose kind of drove me on in my recovery was a very active recovery and in engaging me a lot, a lot of physical work.
Rev David Hazeldine 52:11
But that sense of purpose, was able to enable me especially when I had to think about my instantaneous disability, and struggling with going through the stages of a wheelchair, or all persons Walker, a walking stick. And now will he freehand with just a cast after the operation, to set that you’re disabled?
Rev David Hazeldine 52:35
And to have that sense of overarching purpose. I kind of feel that I’m not disabled. I know I am. There’s no denial, I am disabled, and I’m getting government benefits. There are things I can’t do. I had I went on a plane cybers recently, and I had to take a wheelchair and go through a special entrance and go on a car, which was the curse of the airport, they wouldn’t get out of the way and we even laugh about it.
Rev David Hazeldine 53:01
But I needed that and I am disabled. And because I had this overarching purpose about why everything happened. I had the purpose before the strokes anyway, I just feel like it’s an expansion, a continuation of that. And I think that was one of the hardest things in my period of rehab.
The hardest part of rehab after Brain Stem Stroke And Locked-In syndrome

Rev David Hazeldine 53:18
Because I spent these three months after my ICU 11 days it was spent the three months kind of bedding down and recovering and just stabilizing in this hospital in Lewisham and starting the show a few guys my little fingers started twitching and my feeling came back on my boy that gives various tests and what my right knee was able to lift down a little bit my right, came back spontaneously with about two weeks just started working if nothing ever went wrong.
Rev David Hazeldine 53:49
So they decided to move me on the sixth of January 2022, to a rehab facility in Putney in southwest London called the Royal Hospital for Neuro-disability. And I spent seven months there in the first during the first wave of COVID wishes I experienced all by itself, learning to eat and drink and speak, get my fingers stronger when tennis had to work.
Rev David Hazeldine 54:21
I put myself on intensive work with Beijing like I was at college I tend to start at nine and finish at five and I was helped to get into a wheelchair and got out of bed with a sling that seemed like a merry-go-round ride every morning. And then I was just doing Verity the session of the pressing standing going through various walking aids again and Grassy gained more and more independence until the final day came in about.
Rev David Hazeldine 54:53
It was July near my wife’s birthday July 3. When they said David we think that we can get You home without a care package without anyone for the NHS, airing few we think you can be fully independent when you go home. And that was a tremendous lift because I was dreaming at that time that I would love to walk out of the hospital, ever so triumphant, to be able to be rolled in the hospital, in Putney there in West London.
Rev David Hazeldine 55:28
Locked-in syndrome lying on a bed. And I felt so, so heavy was tied, because when you have your muscles don’t work, and they’re not strong enough to lift themselves. The big word thing is people with stroke struggle with this notice the heaviness you feel and the stupid tarnish it at the end of the day.
Rev David Hazeldine 55:49
So that just got lighter and lighter. I mean, I still feel heavy now but nothing compared to when I remember lying in My bed trying to get up. And I felt like my back was welded to the bed and I just couldn’t get up. So when I had this experience I was thinking about all the things that people have done for the military that was done for me.
Rev David Hazeldine 56:12
People give me medications wipe my backside and do my price when we always have humility was all my Integrity and normal integrity. I forget the word now but self-esteem and all that kind of thing. And privacy was all gone. And I thought it was a wonderful camera evening. But now that muscles are reconnecting and I can move a little bit, surely, I’ve got to do something.
Rev David Hazeldine 56:39
And in my youth, I was a keen cyclist athlete, you’d play football and do weight training for a couple of years, twice a day. And I just understood instantaneously at that moment, in my mind it was one morning, about five in the morning, I’d woken up. And I just thought I’ve got to do something. And I started doing try and do sit-ups.
Rev David Hazeldine 57:02
And of course, I could only move my neck about two centimeters. But it took me until I was home another two months. So in total, it took me about nine months to be asked to do one setup. And that is the length of time I’ve had to where I’ve come from where I am. And I’ve carried on doing that rehab every day.
Rev David Hazeldine 57:27
And that’s the key for recovery to do big goal orientation. We kept recovering every day, about four or five hours in the mornings. Then the afternoon I write and do other things to do with Christian ministry. retire the fishy so ill health. But that time in the morning is invaluable for me. Just get my left leg strong my right leg strong mine, my stomach, my chest, my right arm, just fantastic.
Rev David Hazeldine 57:56
Now, it’s just wonderful to see the weights dropping away, and may not need them anymore and beyond their function. So one of the few who run that around the house myself. And now I cook myself food. Even the other day my wife used to she was a Xiaomi when I first got home, and for the first time, only a few months ago, I was able to have a shower myself. And I was able to get my right hand, my left hand under my right arm to clean my armpits.
Rev David Hazeldine 58:28
I mean, that’s so rude in one respect, so personal, but it’s a massive, massive game. And I said look into it, and suddenly I realized I don’t need you anymore. But the devotion that my wife has given me throughout these years, and these years of recovery has been incredible. But we do joke a bit and say, I’m the only husband who is working to get better.
Rev David Hazeldine 58:55
So you can do chores around the house. She’s got a list of long rants, I’m now doing finances. I’m doing the dishwasher on the current table and I’m making my food and that kind of thing. But that the whole book that I wrote is all in the envelope of devotion is what struck me when I came out was I joined the stroke forums on Facebook.
Rev David Hazeldine 59:18
They’re in America, Australia, and England. I’m struck by the number of relationships and marriages that are broken up due to stroke I can understand it greatly saddened me because when my wife and I got married, I was 20 she was 19. And we promise in sickness and health.
Rev David Hazeldine 59:42
You know, we meant that. And that promise counted there from November 2 2019 onwards, and she has lived up to every moment of impure devotion. And it’s been fantastic. I’ve had to help her in How to Help Me because she wanted to do everything for me, which doesn’t help me recover.
Rev David Hazeldine 1:00:05
So I said, Look, I’ve been learning to ask for help them learn to ask for mercy, you’ve helped me. But now I need to a healthy way, and learn to help myself, I’ve got to struggle and need to learn how to do these things. Print socks on print trousers on Britain T-shirts on. So, her devotion has been fantastic.
Bill Gasiamis 1:00:28
Yeah, it is a massive blessing, no doubt about it. With relationships that fail, often they’ve been failing before the stroke, and the stroke is kind of the end moment. So that’s kind of understandable. Often, it’s the problem is that the person surviving the stroke is in a really bad way. And the other person who is their partner is unable for their reasons to deal with or manage that process that’s understandable too.
Bill Gasiamis 1:01:09
And it just, I think it’s an opportunity for people to do more work, and more and learn more about what they need to do to help themselves because if you can’t help yourself, you can’t help other people. And that’s what I feel. The situation is when people’s relationships, and after, after a serious health issue, like a stroke, because it’s such a big job.
Bill Gasiamis 1:01:35
It’s such a big job to devote yourself to supporting somebody and to therefore also look after yourself while you’re looking after somebody else. I think that the hardest part that I see in people who are being cared for is the caregiver struggles to be able to care for themselves. That’s not a good situation to be in.
Rev David Hazeldine 1:01:56
The difficulty has been my wife has had to learn to romantically love me again, rather than just be my carer. So she’s officially by a carer as designated by the NHS, but that is dropping away, literally day by day. And she’s learned to be my wife again. And then we learn to have romance, rather than just being objects of care.
Rev David Hazeldine 1:02:21
But for the first, if I can be honest, a month, two years after the stroke, like their home, it was just about getting stronger and stronger exercising, exercising. She just let me get on with it and encouraged me and said, You’re great. You’re great. You’re great. Keep doing it. Keep doing it. And it’s just the thing I needed.
Don’t Get Excited Butt by Rev David Hazeldine

Bill Gasiamis 1:02:39
Yeah. Fabulous. So you wrote a book. Somebody put the splinter. They say they told you you should write a book about it. Great to say they don’t get excited. But a true story. Yes. They’ve been in love, faith, and purpose discovery on a journey through utter devastation. And it’s how it has approximately No, exactly. It’s 19 chapters. Yes, how many pages did the last us about?
Rev David Hazeldine 1:03:13
It’s a standard size. You can see the spine of about 250. There are 18 chapters of the story, the 19 chapters just in medical, the little two pages of what happened to me. So just so people clarify Bucha doesn’t major so much on exactly what happened just in hearts.
Rev David Hazeldine 1:03:22
But the real medical language that people will look up and want to know because we all stroke survivors want to find out you know, medically what happened to me that in the last last chapter about page or so, but the reason is called Don’t get excited. But as I started behind this, when I was learning to speak, learned to speak the very first thing that to do the speech and language to present to get me to swallow. And I was not in control of my sweat I couldn’t swallow.
Rev David Hazeldine 1:04:12
So they used to suction it out. There’s tracheotomy, you can see what the list is obviously but I’ve got this whole my neck now. And so they used to suck out the fluid that your mouth produces so much I had no ideas and about seven or eight times a night and they’re stopping you from drowning you’re in slope basically which is a grocery store but that was the reality and I did become used to it. I became used to the sensation of drowning which is quite sad.
Rev David Hazeldine 1:04:46
But because the first thing they do is try to wean you off the trackie and so you have this balloon inside your throat, which is trying to protect your lungs and have a fluid in it They call it a cough this balloon. The first step of the process is to cough down, as in deflating the balloon and opening up your airways to your saliva. And see if you can generate any swallows.
Rev David Hazeldine 1:05:14
Well, I felt very, very vulnerable. Any kind of trick or slide or any noise in the room any joke, you’re laughing or any distraction will make me cough and choke. My homeboy was shaking violently because I had no strength to control it, then the physios who are in charge of that, and speech-language therapists said that’s too much for you, we’ll come back tomorrow, or we’ll give it a rest day.
Rev David Hazeldine 1:05:40
And this was slowing down my recovery. So I would have to blink through the effort was my wife, when I wanted to sell a summit that happened. That improved I used to notice overnight what happened in my body to say, community to don’t get excited butts. So she would not laugh, not Oh, hooray not give me random floors or anything like that, because that set me off to just walk out of the bay, get excited come back in, then I say, Guess it but my right arm moves, look what my fingers can do.
Rev David Hazeldine 1:06:13
Or my knees started moving last night. And that was how I was able to keep the rehabilitation going. Without her joy, excitement, messing things up. But that’s why we don’t get started. But so then we use, we then use that as a phrase for other things. So I would say don’t get excited, but I don’t need my wheelchair anymore. Don’t get me started. But I made my first phone call. Don’t get excited. But I can stare at all these different things now.
Bill Gasiamis 1:06:43
Yeah, that’s exciting. I like that. I love the idea that her excitement was going to set you off and you needed her to be mild-mannered and to act as if nothing happened so that you don’t get triggered.
Rev David Hazeldine 1:06:59
We have this added thing that um, one of the side effects of my stroke is my brain has lost the ability to control this emotion. So you may have noticed and listened and may be able to hear me laughing a bit excessively sometimes. And so I’ve got more and more control back and there are mental techniques.
Rev David Hazeldine 1:07:20
I was taught by a psychologist during my stay we have to control it. But it means also my anger is there like a child throwing the toys at Graham, unlike a fist you’re at like a kid or crying. My son wants to show me the latest Star Wars film My brother is a member of Battery you can get access to graduate in the UK, Susan’s Karen. So I watched this in Lewisham Hospital where I was paralyzed.
Rev David Hazeldine 1:07:49
And I started sobbing and sobbing and sobbing, and my body was shaking. I’ve seen what is happening here. And the reason I was sobbing was that good traffic over evil. I don’t cry in any movies because I know they’re made up. But I’m laughing and crying that the force beat the darks Yes, crazy is ridiculous.
Rev David Hazeldine 1:08:12
So that added to the Don’t get excited. But thing. I would say also, that one of the hardest things for us as a family to get to grips with is talking about this. What’s called emotional lability? Because it’s an unseen but very real dynamic. Where the language you’ve had to start to employ as we call it, or the ability, so I can’t say sorry now for getting angry, but I just don’t have the control.
Rev David Hazeldine 1:08:43
I can’t, you know, sorry for doing, you may say a joke, have a little chocolate, and move on with the conversation. I’ll have a fit for 10 seconds, and it’ll become awkward and embarrassing. So I’m learning these techniques, and my family’s learning them, but we’ve had some quite difficult times to stress over it. And that is one of the things that’s affected all of us.
Bill Gasiamis 1:09:07
Yeah, emotional outbursts. I was angry, then definitely crying a lot. And, yeah, I couldn’t control it for quite a while I’d be on stage and cry. But that was good, because then that ropes the audience in even further and you make them you make them yours now. So they’re kind of like I saw it. I saw the fun side of that. And I thought, Okay, I’m going to be okay with this. What happens?
Rev David Hazeldine 1:09:36
But it’s the very first time that made me quite insecure. Yeah, because I spent my life speaking to large groups of people up to 1000 people at a time. And I’ve never, ever suffered from self-consciousness always been quite a confident, bold person. But for the first time I knew that I looked and sounded quite disabled and I was a bit embarrassed Yeah, so whenever I preach now, which is usually about twice a month and different churches, when I’m gonna share my story, I have to say rather beginning.
Rev David Hazeldine 1:10:08
Look at my wife. If you see her nervous, then you get nervous. For this. She’s casual, you be casual, like an air stewardess. You know, if you see them running around the plane, you got to be nervous. But if a plane is jumping up and down, and they’re just walking back and down serving tea and coffee, just relax.
Rev David Hazeldine 1:10:27
So I say get out your phone, look at BBC News. Listen to us for a song or something. Let me just gain control. And then we just carried it on. And cannot just say congregations are fantastic about it fantastically well, because obviously, it’s quite an emotional story, reliving this insurance feature videos. So yeah, that’s one of the things that has affected our whole family.
Bill Gasiamis 1:10:53
So the book has been out for a little while, or, yeah. When did it come out?
Rev David Hazeldine 1:10:59
I must say, I can’t remember the exact date it was in April time. Yeah, so we’re selling, we’re selling copies around different churches that we go to in the UK. And it’s available on Amazon for the Kindle version, obviously, worldwide. You can also get the paperback version on Amazon, UK. But you can get the paperback version worldwide through faithbuilderspublishing.co.uk. and when you’re on that website, you have to go to their shop. And it’s it comes up you can buy their faith builders publishing.co.uk.
Bill Gasiamis 1:11:38
All right, we’ll make it we’ll make sure that we get all the links and instructions from you. So that we can put that on the show notes. And people can follow that there. Yeah. It’s been a very lovely chat. Thank you so much, and nice to meet you. And you. And I appreciate your take on the whole God and stroke thing because I think it’s an important conversation that a lot of people need to have.
Bill Gasiamis 1:12:08
I think a lot of people will, some will find God and some will move away from God because of what happened to them. Yeah. And whatever stage of their recovery, I hope that they’ll listen to our conversation with curiosity and at least make them think about where they’re at with their faith and with their recovery and what they have to do to change things if there’s change is necessary.
Rev David Hazeldine 1:12:36
Yeah, from my point of view, I just say if anyone’s desperate, many people get desperate. I struggle with PTSD. And I struggled with suicidal thoughts for one particular moment in that recovery. And we get low and things go wrong, after recovery as well.
Rev David Hazeldine 1:12:53
And I would just say if you’re that low, and you have some kind of faith, or some kind of hope in the universe, or whatever you might call it, just specifically, say, God, have mercy on me discover the power of mercy and see things begin to change. Let him help you. That’s why mercy is about helping those who can’t help themselves, and God loves to help people.
Bill Gasiamis 1:13:20
On that note, thank you for being on the podcast.
Rev David Hazeldine 1:13:23
Thank you.
Bill Gasiamis 1:13:24
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. If you would like to support this podcast, the best, most important most amazing way to do it is to leave the show a review on Spotify or iTunes.
Bill Gasiamis 1:13:49
It must help the podcast reach more stroke survivors who are looking for this kind of content, and who will hopefully need something to make their recovery journey a little easier. So if you’re watching on YouTube, comment below the video I answer all YouTube comments.
Bill Gasiamis 1:14:10
So I’m looking forward to reading the comments from people watching on YouTube, like this episode, and to get notifications of future episodes, subscribe to the show on the platform of your choice. Thank you for being here once again and listening. I appreciate you see you on the next episode.
Intro 1:14:29
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. 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.
Intro 1:14:45
All content on this website at any length blog, podcast, or video material control this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis the content is intended to compound your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice.
Intro 1:15:08
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 1:15:30
If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department.
Intro 1:15:47
Medical information changes constantly, and 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 Brain Stem Stroke And Locked-In Syndrome | Rev David Hazeldine appeared first on Recovery After Stroke.
1 hr 17 min
July 31, 2023 Carotid Artery Dissection Stroke Recovery – Marco Giovannoli
Marco Giovannoli was 46 and running in when a previously undiagnosed carotid artery dissection caused a blood clot to form which caused an ischemic stroke that Marco has been recovering from ever since.
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Highlights:
02:07 Introduction
08:53 What stops you from delegating?
15:09 Running in the hot weather
21:02 Reaching out to a psychologist
28:57 Finding your purpose in your podcast
34:08 Putting your story in writing
40:43 Support from family and friends
49:05 How far along is the book?
55:04 The hardest part of writing the book
Transcript:
Macro Giovannoli 0:00
Well, yes, as once the stroke happened I was positive, and confident I would recover after a few months around four or five months is a really bad time. I struggled emotionally. I felt I could not see the light at the end of the tunnel. I started having a bit of self-pity to me. I started comparing myself to the others and it was dark. Honestly, I was dark, and while I’m still recovering from that time slowly, slowly, I changed my mood. I try to see things differently. And from that, I try to be positive honestly.
Intro 0:42
This is the Recovery after Stroke podcast. With Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:55
Hello, and welcome to the Recovery after Stroke podcast. 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 is be a stroke survivor, or care for someone who is a stroke survivor or you are one of the fabulous medical people that help stroke survivors.
Bill Gasiamis 1:17
Go to recoveryafterstroke.com/contact, and fill out the form. 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 this is episode 261 and my guest today is Marco Giovannoli, who was 46 on the day he went for a run in the desert in his adopted country when he experienced an ischemic stroke that occurred because of a previously undiagnosed carotid artery dissection. Marco is in the process of writing his memoir, Miracle in the Desert. Marco Giovannoli. Welcome to the podcast.
Macro Giovannoli 1:56
Thank you, Bill. Nice to meet you.
Bill Gasiamis 1:59
Nice to meet you, too. Thank you for reaching out and requesting to be a guest on the show. Tell me a little bit about what happened to you.
Introduction Marco Giovannoli

Macro Giovannoli 2:07
Okay, so it happened on September 8, 2022. I was running. After one hour of running. I felt dizzy I fell to the ground. I stood up again and added a few meters. I fell again and I couldn’t move at all. So I had friends with me so they called the emergency response.
Macro Giovannoli 2:34
They came by the way they assessed my condition, I couldn’t feel my right side at all so right away they thought they had a stroke. So they brought me to the hospital where they did a little bit of angiogram and they realized that I had a thrombosis at the left ICA with dissection of my left ICA artery. And that’s it so that I had the stroke.
Bill Gasiamis 3:04
Dissection of the left.
Macro Giovannoli 3:08
Left ICA intermediate carotid artery.
Bill Gasiamis 3:13
Okay. Understand, and the dissection inside created a blood clot, or, the clock traveled or just stayed there and blocked the blood.
Macro Giovannoli 3:26
Yeah, stayed there because they could not remove it or do anything. They could not pay to steal the stent. So they tried to remove the Klotho angiogram thrombosis, but they could not didn’t go away. So they stayed there a few months until then they went away, until only soon, after a few months.
Bill Gasiamis 3:46
Yeah. Do you have any underlying reasons? What might have caused the dissection? Was there any trauma to your neck before the stroke? Do you have any symptoms whatsoever before that?
Macro Giovannoli 4:02
No. I was the day before I was a little bit tired because I was a runner. So I was a little bit tired the evening before. The doctor may seem a little bit of extra extension, but they could not find any underlying reason why. I think they have no medical condition no blood pressure PRP, cholesterol anything else, and I say the only thing I felt was I was really tired the day before. That’s it. Nothing more than that.
Bill Gasiamis 4:34
Yeah. How old? Were you?
Macro Giovannoli 4:36
46 When I did that, but now I’m 47
Bill Gasiamis 4:40
Yeah, where were you living at the time?
Macro Giovannoli 4:44
I was living in the UAE Abu Dhabi.
Bill Gasiamis 4:48
Tell me about the United Arab Emirates medical system. How did you feel comfortable being there? Was it a good experience?
Macro Giovannoli 4:58
Overall it was a really good experience. I mean, here, the medical is private. As part of our working contract, the government provided us with medical support that was private and nice. I acquired medical response after I’ve been two weeks, two weeks at the hospital, one of the main hospitals in Abu Dhabi.
Macro Giovannoli 5:19
After I spent three months there, one of their Rehabilitation Centers here in Abu Dhabi, I had a great experience at all three events, I have to say, it’s nice. They are friendly. I mean, of course, most of the Doctors who work, are not from the UAE but are mainly from the East and West of the world, but was nice for me, then the experience with them. Of course, I tried a command that he wanted to go through this one but he said I was nice.
Bill Gasiamis 5:49
Yeah, of course, we don’t recommend that for anybody. But many people find themselves in this situation. Now you’re an Italian living in the United Arab Emirates, you move there for work or family reasons.
Macro Giovannoli 6:02
For work. I moved here 10 years ago, for work.
Bill Gasiamis 6:07
So you are very comfortable with living in the United Arab Emirates, you’re quite familiar with, what happens there, how it works, and all the things that you need to know to sort of get around.
Macro Giovannoli 6:20
Yes, yes. Yeah. And also I have a lot of local friends as well. So it was nice too and everything here.
Bill Gasiamis 6:27
Yeah. What kind of work do you do Marco?
Macro Giovannoli 6:29
I’m an Aeronautical Engineer so I work for one of the major airlines here in the UAE.
Bill Gasiamis 6:36
Okay, so that’s interesting. How does the stroke impact you? When it comes to work? How long did it take you to transition out of your recovery back to work? Has that happened yet?
Macro Giovannoli 6:52
Yes, after five months, I went back to work. Luckily, I work at the office, I don’t work anymore on the aircraft. I stopped working on the aircraft many years ago. So I work in the office, I lead a team of 20 people. So my work is mainly typing on the computer. Of course, now I don’t have my right side doesn’t work yet. So I’m typing only with my left side. And, I’ve everyone supported me.
Macro Giovannoli 7:13
So after five months, I went back to work. Of course, I have a little bit of trouble getting used to going back to work after five months, especially, I didn’t have a problem with my cognitive function but mainly was getting used to getting back there and of course adapted that only one left and most of my work is not perfect yet. So takes took some time. Now, okay, I can almost a month, almost 11 months, and much more confident that
Bill Gasiamis 7:46
leading a team of 20 is difficult. Under normal circumstances, there’s a lot of organization, and a lot of planning, what were some of the things that you struggled to do?
Macro Giovannoli 7:58
Well, I was always someone who liked to do things on his own. So what I had to change mostly was trying to delegate as much as possible, I have to learn to delegate as much as possible. Because when you have 20 people, like I say it’s not easy. And we’re Interlinked on a larger scale of an airline. So we had a lot of tasks things to do with many other departments as well. So I had to learn how to delegate as much as possible. How to not do what I was supposed to do. Focus solely on my main task.
Bill Gasiamis 8:36
Yeah. Was that easy? Doesn’t sound like it.
Macro Giovannoli 8:40
No, no, it wasn’t easy. I’m still struggling with day-to-day, but slowly, slowly, good things I have a lot of good friends at work as well. So they helped me also to transition to this different mentality.
What stops Macro Giovannoli from delegating?
Bill Gasiamis 8:53
What stops you from delegating? Do you think it’s that you don’t have faith in your colleague’s ability to do the work the way you want it done? Or is it that you’re somebody who prefers to have control? Did you learn something about yourself that perhaps you weren’t aware of at that moment when you were back at work? And you have to delegate you can’t delegate anymore?
Macro Giovannoli 9:22
Well, I like to do things in my way. But of course, as you said, I learned to trust people more I trust people also before the stroke, but I start trusting even more now. Because I’ve to accept those the way they do. Of course, they will never do the way I did things, but they are still okay also the way I do I accept what they do. So I’ve learned that people still can do their way. And I still I can like them on their way.
Bill Gasiamis 9:57
You can get the same result.
Macro Giovannoli 9:58
It’s not easy.
Macro Giovannoli 10:00
Yes, the important is the result at the end. At the end of the day. The means can be different. That’s okay.
Bill Gasiamis 10:08
Yeah, beliefs, processes, methods. If they’re different, it doesn’t necessarily mean the outcome won’t be the same. It just means that people have different ways of getting to the same destination.
Macro Giovannoli 10:18
Correct.
Bill Gasiamis 10:20
Yeah, it’s like an airplane, Marco. You go into an airplane many airplanes can take you to Athens airport or Napoli or Rome or wherever it is many airports, and airplanes that can take you their different directions, different flight altitudes, and different types of aircraft. But if I want to get there, there are a lot of options.
Macro Giovannoli 10:43
Yes, the same, more or less the same. Yeah, correct.
Bill Gasiamis 10:47
Understand? So when you moved to the United Arab Emirates, what was that transition? Like? Because you went from your hometown in Italy to the United Arab Emirates, there was this transition some getting used to being in a different culture in a different country, different language?
Macro Giovannoli 11:12
Well, before coming here, I was in Saudi Arabia and Libya. So I moved out of Italy 15 years ago. So it wasn’t easy. I mean, I had to do a couple of transitions before. Well, I mean, when you move to a different country, Yes, firstly, you have to adapt to the mentality is different. So I say I’ve been in the Middle East, North Africa, Middle East region, for 15 years. The word is it wasn’t easy to adapt, it takes some time you need to be open.
Macro Giovannoli 11:44
One takes you to be fully open. You live in a world where people come from all over the world the same you have to accept they have differences in mentality the way they do the way they think the way they speak. So that is, it’s a melting pot of the world. Now take some time before you get too used to it.
Bill Gasiamis 12:04
Yeah, did some of those skills that you had from transitioning in all those different places? Over the years did they help you transition from I’ll say, quote-unquote, your old version of you before the stroke to this new version of you? Has it is it a similar type of transition? Or is it something different
Macro Giovannoli 12:30
is somehow similar massively because you start from somewhere and you have to move to someone else that you are not you are not so somehow yes definitely has helped me to accept what I have now what I don’t have mainly what I don’t have now. I try to find the best out of what I have today.
Bill Gasiamis 12:48
Yeah. And what don’t you have now?
Macro Giovannoli 12:53
Well, I don’t have my right side mostly my right side doesn’t work. I’ve still a little of a problem when I speak with the muscle on the right side of the cheek I can still feel when I speak I think I feel that I sometimes miss some words. And I don’t know if everyone can understand what I’m saying.
Macro Giovannoli 13:12
Because, because of my muscle on the right, and the left. Well I like I was a runner before so I miss running, I miss cooking because I was cooking although I cook we’re to one hand. But of course with one hand only is not the same as two hands. And the rest of my life I was active always outside, so that time is I tried to do as much as I could. But of course, it’s not the same.
Macro Giovannoli 13:44
And of course, the least is I miss typing with two hands because I was a little bit of a programmer at the time so not able to type, only typing with the left hand one key one stroke at a time is not easy.
Bill Gasiamis 13:59
Yeah, I understand so with your deficits on your right side. Are you able to walk? where is the walking at?
Macro Giovannoli 14:13
Yes, I walk beside where I live there is a canal because I’m close to the sea. So I walk along the path now of course towards the outside. So now I’m transitioning door so static bike and treadmill. And this week, hopefully, I will go back to work outside.
Bill Gasiamis 14:33
Outside. It’s very hot. How hot is it there?
Macro Giovannoli 14:37
Well, now we’ll be around 40-45. With Humidity very high around 80-90% Humidity percent of humidity.
Bill Gasiamis 14:45
do you find the weather affects you differently now after the stroke than it did before the stroke?
Macro Giovannoli 14:52
Well, I feel the heat much more now compared to earlier and also the cold, like when I’m in the office with air conditioning. I feel Will the right side become a little bit numb because of the air conditioning. So they both side they affect me I think the stream they are not good at all.
Macro Giovannoli Running in the hot weather
Bill Gasiamis 15:09
Yeah, 40 degrees Celsius is equivalent to 104 degrees Fahrenheit. For people listening who are not in countries that use Celsius, and they’re in, then 80% Humidity must be draining. And I can’t imagine what that’s like, we don’t get that very often here in Melbourne Australia. But does that drain you? What does that do? How does that impact you? Does it change the way you’re able to use your brain and your cognitive function? Do you notice the deficit getting worse?
Macro Giovannoli 15:48
Well, drains you completely. you don’t feel energy anymore, It drains you completely and leaves you as if you are a battery going empty. And with time if you work for a long time there’s no energy anymore.
Bill Gasiamis 16:03
Yep. Were you in the running phase of your life when you were very active and running? Are you avoiding running during the day? What are you doing? Are you running in the UAE?
Macro Giovannoli 16:18
Well, we are running early in the morning, but around four or five o’clock in the morning, that’s when I got my stroke. I got a stroke at 6 a.m.
Bill Gasiamis 16:30
And you have to get up at that time so that you can run in the cooler temperatures?
Macro Giovannoli 16:37
Yes, I mean, the evening is still really warm. So the way to do it is early in the morning before the humidity comes up.
Bill Gasiamis 16:46
Do you get any sleep? If you’re running at four and five in the morning? Are you getting any sleep?
Macro Giovannoli 16:51
Well, you go too early bed maximum of 9:00-9:30 you are asleep in the evening. If you want to keep this cycle.
Bill Gasiamis 17:00
Yeah. And is that a cycle that you kept for a long time? Was that something that you did every day with all of the same people?
Macro Giovannoli 17:06
Yes, most for three years, Or every day with the same amount of people.
Bill Gasiamis 17:12
Yeah. Do you feel that your fitness and your health have helped you? With the stroke recovery? Has it been a benefit to have done all of that exercise and fitness beforehand?
Macro Giovannoli 17:23
Well, I think so. So the doctors say definitely because I was active, I was in good shape. So they said they would help I feel that helped a lot. Of course, the muscle on my left side is completely gone. My right leg is iffier to cheat, like at the moment, but yourself. I mean, I can do exercise, definitely more than what I still can do not the same as I could do before the stroke. But I can work fewer hours at the moment. So I’m trying to build my stamina back one day at a time.
Bill Gasiamis 18:02
So it sounds like you’re keen to become active again and physically fit again. Have you transitioned and tried some other sports like riding a bike with say, three wheels? With the additional wheels at the back for balance?
Macro Giovannoli 18:18
No, I didn’t try until we static bike indoors. But yet, let’s have some friends suggest the tricycle to try. That could be an option in the future. Because I was looking, I went back to the pool as well with the float. But because that says my right side doesn’t work. So especially the arm is not easy so I try to use my as much as possible my leg to swim, yes. I want to try something different as well and see how would they go.
Bill Gasiamis 18:47
Yeah, fantastic. With your mood and your emotional state. Was that impacted? You seem very upbeat, and very positive. You seem like everything is gonna go to be okay. Did your mood and your personality get impacted in any way that was negative or not your normal self?
Intro 19:12
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 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 19:42
If you’re finding yourself in that situation. Stop worrying and head to recoveryafterstroke.com where you can download a guide that will help you it’s called Seven Questions to Ask Your Doctor about Your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering. From a stroke, they’ll not only help you better understand your condition, 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.
Macro Giovannoli 20:15
Well, yes, as soon as this stroke happened I was positive and confident, I would recover. After a few months, around four or five months, I had a really bad time I struggled emotionally. I felt that I could not see the light at the end of the tunnel. I started a little bit of self-pity to myself, I started comparing myself to others.
And it was dark. Honestly, I was dark. So took a month, what was like one month while I’m still recovering, probably from that time, slowly, slowly, I changed my mood. I try to see things differently. And from that, I’m trying to be positive, honestly. But I had a really bad time. I have to say, roughly one month side.
Macro Giovannoli Reaching out to a psychologist
Bill Gasiamis 21:02
Yeah, it’s part of life, isn’t it? I mean, you’re going through something completely different. It’s changed you. There’s a lot of adjustment, your identity is being impacted, and you’re not able to work straight away. So it’s giving you a bit of a hard time and you notice that you had about a month of a dark time, did you reach out to anyone for some assistance or for some help with that?
Macro Giovannoli 21:25
Yes, I had professional help. So I contacted the psychologist and had some sessions with a psychologist, my life companion, and she helped me. She also helped me to go back into the faith because I lost faith many years ago. So I began faith and to the years. I also, try to look the life from a different perspective, I change the way to am.
Macro Giovannoli 21:54
I mean, I look forward to going back to studying because I lost studying for a long time. So I went back to study learn things, new things. And I started enjoying life. I started enjoying my family, my friends said whatever I tried, I was free to do whatever I could do or whatever limitations I went back to cooking and also with one hand. And slowly I think I’m I’m really in good shape at the moment.
Bill Gasiamis 22:24
Yeah, that sounds good. So you went back to your faith? Yes. So if you’re, well, I’m Christian and I hardly ever go to church and I hardly ever went to church and I only went when my mum might go and I only went for a wedding or a funeral, Christmas, and Easter so not very often so I have some kind of faith but not a real deep faith. Is that the side of a sort of faith that you used to have and has it deepened since then how did your relationship with your faith evolve and change?
Macro Giovannoli 23:05
Yeah definitely like you said that was the same you probably even less than what you said not even a funeral or wedding I would have changed the way that I started praying more I started thinking that they can help praying helps a lot and helped me to be more positive and self-confident. I mean it was praying but also it was a self-talk to myself.
Bill Gasiamis 23:32
Okay, self-talk to yourself. What kind of things are you saying to yourself?
Macro Giovannoli 23:37
I tried to be possible myself I try to talk a lot to myself like to say that my arm will move over time. I was recovering. I will be I was, I was telling me the time that I’m a runner and I’m also an author because I can tell you I’m writing a book about my story.
Bill Gasiamis 23:57
Yeah, I love that. So what you’re doing is you’re telling yourself that you are still a runner even though you’re not running at the moment. You’re not letting go of that part of your identity.
Macro Giovannoli 24:08
Yes, yes correct. Um so that I use my right hand to say that I can jump I say that I can move my right wrist and everything is going to be fine.
Bill Gasiamis 24:22
Now with your right side, is it that you also have a foot drop? Or is it that you have that stopping you from running at the moment or is it that you have other deficits which is the deficit that specifically stopping you from running
Macro Giovannoli 24:37
my hip flexor, I don’t have hip flexion and knee flexion enough to raise. I for the drop but mainly hip flexion and knee flexion that are enough to allow me to raise the foot drop to clear the ground. I can probably jock a few meters but not more than that one.
Bill Gasiamis 24:55
Okay. So do you think your faith is, is part of the reason why you’ve had this level of sort of approach, your approach to your identity? And do you think that faith has helped you bridge that gap so that you can remain a runner? Even though you’re not running? How? How did that happen? How, what role does your faith play in the recovery and your identity?
Macro Giovannoli 25:29
Well, helped me, Faith tells me to figure out that have to look at the positive side of the event, and that things can always go well. And whatever we do, we have to believe in ourselves and our entity, I think we have to be our hero sometimes.
Bill Gasiamis 25:49
Do we have to be our heroes?
Macro Giovannoli 25:52
Yes.
Bill Gasiamis 25:53
Yeah. So faith in a higher purpose, you know, a higher being is also faith in ourselves. It’s the same. Are they combined? In your mind?
Macro Giovannoli 26:01
Yes, yes. I mean, well, if you believe in something, first, you have to believe in yourself, otherwise, you will not believe in something else.
Bill Gasiamis 26:11
Yeah, I tend to agree. I think that’s very similar. That’s my experience with faith. Now, I don’t go to the church more often. I don’t pray more often. But I do feel like the God, a God, the Spirit, whatever you want to call it. I think it’s Me, in Me, part of me, not separated from me. It’s not out there. It’s in here. And when I have difficult moments, and I’m looking for some inspiration, my prayers are not in the traditional way that people pray.
Bill Gasiamis 26:48
But my prayers are more about being uncomfortable with something difficult for me to do or to achieve or to overcome or scare me. And then doing it anyway. And believing that no matter what the outcome is, I’m going to learn something, it’ll be a positive outcome, even if I don’t succeed in that particular thing, I am going to get a positive result, I’ll learn something, I’ll overcome a fear I’ll discover something new about myself.
Bill Gasiamis 27:23
Or see more about the path going forward. Then if I stayed in fear, didn’t do anything, and just stood there and was afraid, I think my faith in a higher purpose in me, helps me to continue to move forward and not live the way that I used to beforehand which created regrets which made it possible for me to be always sort of thinking that I am not capable of doing that thing.
Bill Gasiamis 28:00
It’s too hard. No one is interested in my podcasts for example, no one’s going to want to listen who’s going to want to come on my podcast you know, I did all of those things. My faith in myself was blind faith because I’d never done a podcast before I didn’t know what a podcast really was how to do it or how much time and effort blind faith in myself and faith that I would be guided appropriately by the universe or the higher purpose or the higher being.
Bill Gasiamis 28:34
Made it possible for me to continue the path and it started very very slow so I could change my identity and be someone who identifies as a podcaster all of it happened at the same time and it was faith that that did it was the glue that made it all possible I feel.
Finding your purpose after carotid artery dissection stroke

Macro Giovannoli 28:57
Yes, in the end I think we can change, I mean, we have to find I found your purpose as well in writing. I have to say, like you found your purpose in podcasts or whatever you do. And I told you already you were one of the first things I found when actually on the internet after I had the stroke was my rehabilitation center. I was trying to find whatever possible to help me and I found your website, and your podcasts normally I listen to your podcast when I walk in the morning.
Bill Gasiamis 29:31
Yeah, I love it.
Macro Giovannoli 29:32
It helped me a lot as I think you are doing a great job with whatever you are doing. I think it’s really helpful to people like me, and I’m sure many other people have the same like you said they also found new purpose in whatever I do today, and wherever I am today.
Bill Gasiamis 29:46
Yeah, that’s the thing. Exactly. You just made my point for me, which was I feed all the things that you just said were not going to happen, that people who need the podcast would not find that they wouldn’t think it was useful, and so on, I felt like it was not going to be me, that was going to contribute positively. But I had to do it anyway. Because the possibility that it was going to achieve a good outcome was better. In my mind, it was better to try and maybe make a positive difference than to not try at all.
Bill Gasiamis 30:27
And in the end, it wasn’t about me, it was about the other people that I wanted to help. It started with me. Because like you I was looking for support, I was looking for people to be inspired by I was looking for people to teach me and to learn from, but I never had them too, when it happened to me, in 2012, there was nobody doing podcasts, and all this kind of stuff was stuck. So I decided to do it myself. So I can be that person for me. And then I could bring people on who I would learn from.
Bill Gasiamis 30:58
But I never expected I’ll be honest, I never expected people like you to reach out to me and say, this podcast helped me it was amazing, all that kind of stuff. And that’s the beauty. That’s the proof that I needed, that it’s worthwhile to have faith in a project that you are afraid of that you have no idea how to do, that, you know, in your head, you’re making stories up about why it’s going to fail. And why you should do it anyway, this is exactly the reason why. So I appreciate you.
Macro Giovannoli 31:30
Well, I think he’s on time to say maybe he meant it to be as simple as this, like you said, I think we have to believe a little bit more a bit than ourselves in what we can deliver as time things will happen because we want them to happen. I mean, maybe we’re supposed to be so, yes, I mean, sometimes we just try to try. Let’s say there are fears, we fight fears. And just try. And let’s see how it goes.
Bill Gasiamis 32:00
Yeah, I think most people who are going to come across the work of, for example, a stroke survivor who’s trying to help other stroke survivors are going to be very accepting and willing to encourage you and to be excited by what you’re doing. Because that’s what we need, we need more tools, there are still not enough tools out there for stroke survivors. The problem with stroke is there’s one in four people will have a stroke in their lifetime. Many, many people are going to have a stroke.
Bill Gasiamis 32:31
And we need to make tools available to as many people as possible. What I like about the podcast is that it’s free for people to download. And there is a part of the podcast that anyone can access. So regardless of people’s ability to pay for a service that I offer, for example, I need to pay for the podcast that makes it much, much more accessible than it used to be in the old days.
Bill Gasiamis 32:59
Nobody was speaking about in the old days, 10 years ago, there was no one speaking about these topics in such a vast amount of with such a vast amount of interviews, for example, you didn’t have somewhere where you could go every single week and get a new perspective on that particular topic if you were interested.
Macro Giovannoli 33:22
That’s correct. I can see it was probably 10 years ago, I don’t know 10 years ago, I definitely, didn’t have a clue. Every there is and your podcast helped. Because keep, like you said give many perspectives on the same subject. And it’s not only people but it’s also medical, I found a lot of good listening from your podcasts or books or research or your podcast. I went and searched other subjects, too, to distract myself from the stroke and possible recovery.
Putting your carotid artery dissection stroke story in writing
Bill Gasiamis 33:59
Yeah. Fantastic. So tell me about your transition now. So you’ve been in recovery for five months, it’s a very short amount of time. And already you’re considering the possibility of telling your story and putting it out there for other people to learn from. So tell me a little bit about that idea. How did it come to be that you should put this thing in writing?
Macro Giovannoli 34:24
Well, because it mainly was part of the emotional struggles the book is of course about what happened to me, but merely my emotional struggle and the way I overcame it. So it’s merely a journey of self-discovery after a stroke. So that’s how it came out. So because I have people that they suggested me to do it. support the idea that, that should prove these things and writing because I could help a lot of people, to see how we can we can take up their life after stroke.
Bill Gasiamis 35:04
Yeah. And that, that the process of writing, do you find that part of it is helping you heal? Is it putting the word out of your mind and body in your head and putting it into a book? Does that kind of help? Is it like an exorcism? Does it help you get that stuff out? How does it also support us?
Macro Giovannoli 35:33
Yeah, that is sort of cathartic sensation means you are healing yourself and putting your thoughts in words. Because when you’re going to read your word you are going to see things a different way. So I could see my path to what happened to me, mainly my emotional struggle there, I could, I could distance myself from them a little bit and see them with a different perspective afterward.
Macro Giovannoli 36:00
So it’s a really good thing to write down, I suggest to everyone to write down it’s a little therapeutic and somehow, is suggested by many psychologists to write down and helps a lot to distance it from all for yourself.
Bill Gasiamis 36:16
Yeah, it seems to create a little bit of distance as well from the event. And it kind of places it in the past where you’re reflecting on it, you’re not reliving it. And for me, that’s what I found that it was doing when I was talking about my part of the recovery story in the book, which I’m editing right now. It’s a long process. By the way, writing a book, and I’m editing it right now.
Bill Gasiamis 36:42
It felt like it created more distance between me and the events that were very, very difficult for me to deal with and live with. Do you find a similar experience? Is it doing that for you? Even though you’re still five months into recovery?
Macro Giovannoli 37:01
Yes, no, I’m 10 months at the moment. Yes. put a little bit of distance is like being the third person that can see things and interpret them.
Bill Gasiamis 37:11
and you’re observing the situation rather than living the situation all the time?
Macro Giovannoli 37:16
Yes, yes. Yeah
Bill Gasiamis 37:18
Yeah. The third person that’s a great way to put it that’s exactly what I experienced. So at work, how have you I know your colleagues have been supportive. But have they ever come across somebody who’s had a stroke? Was it a big shock to them? How did they manage to deal with and speak to you about what happened to you or isn’t that happening much?
Macro Giovannoli 37:42
Well, was a big shock for most of them, most of my friends and colleagues. Yes, they took their time as well to adapt to the situation I said, Everyone tried to build a positive with me since day one, trying to support me to say that things will go well and to help me with everything. But of some of them of course they have the experience in their family and friends a large audience that was new for most of them, for most of people so most maybe were shocked would happen me.
Macro Giovannoli 38:14
Because like I say, everyone will say I was fit. So it was really strange that happened to me. So they say okay, it’s happened to him that was fit, it could happen to everyone every any day. So took some time for them as well. They’re been positive and supportive of me every day in the work that I do. They even hold my hand every day since they happen. They are part because they encourage me to have people and support people around me. They can help you. They can accept they give you a shoulder when you need to cry.
Macro Giovannoli 38:53
They help you when you have some doubts, so they help you to see things differently. And they helped me a lot at work. A couple of friends they’re my close friends at work. They helped me to see the work in different ways to adapt myself also the new style of work.
Bill Gasiamis 39:10
Okay, so everyone is.
Macro Giovannoli 39:12
So I think that the outcome is that you need to have a circle of support. I mean you can be at work and be at home everywhere. They are really helpful. To have someone that you can speak to, they can give you advice, they can also let you see your words differently. It’s a sort of writing your friend. They are there. You can speak with them and they can assess what you are saying so they can tell you if you are saying good or bad or maybe you are not absolutely 100% on the right track.
Bill Gasiamis 39:44
Yeah. Is a lot of your family here with you in the UAE or did you live a lot of your family back in Italy? Who do you live with at the moment?
Macro Giovannoli 39:58
Well, I’m separated from Italy, so I live at the moment with my current life companion. So my son is studying abroad at the University in Holland at the moment. And I don’t have, I actually except my friends, my life companion, we I, I have no one here.
Macro Giovannoli 40:17
So as soon as this stroke happened my sister came also my ex-wife came to support me for the first two weeks. And after that, my parents came from Italy, they had been with me for six months before they went back to Italy. After the summer started here they went back to Italy. And I got the feeling to continue my life with my life companion here too. So that’s it?
Support from family and friends of Macro Giovannoli
Bill Gasiamis 40:43
Yeah, it’s amazing to have all the support from the family back in Italy.
Macro Giovannoli 40:50
Yes, I mean, I say, it’s really important to have someone that can support you. So you can talk you can even cry sometimes, because I cried a lot. I told you at a bad time. You need someone who can tell you good words, I can accept the way you say it. I mean, they don’t judge you. They simply accept what you’re saying. When you are down accept you are down and when you’re up they accept you are up. They accept you’re up and down. I mean, the other end is like a roller coaster. We don’t decide which type of ride we have to do.
Bill Gasiamis 41:22
Yeah, absolutely. It is a roller coaster, that’s for sure. I also cried a lot. And I still cry sometimes about I don’t know things that bother me that I’m triggered by there. But that has decreased. So I think I’m a little more sensitive than I used to be. And I am not afraid to express it for sure. Crying in front of the family is a difficult thing for some family members. Because they don’t like to see you cry. They think it’s a terrible thing. Or they don’t understand exactly what’s happening. And they judge, the judge the crying.
Bill Gasiamis 41:58
They don’t judge me necessarily, but the crying makes people uncomfortable. But that’s okay. Most people get over it. So you’re, it’s interesting, you know, to listen to your story. And to be, because I was at home with everybody here. And they came around me very very quickly. There was no change in my life. The hospital is very close to my house. I don’t have a I’m very familiar with the location with the doctors with all of that type of thing. Did you have a navigating the medical system?
Bill Gasiamis 42:40
I imagine that you didn’t have much time spent navigating the medical system in the UAE or other countries beforehand. It seems like you’re fit, you’re healthy, you’re well, you wouldn’t have spent a lot of time. Was that a difficult place for you to be navigating the medical system in the UAE? Or was it quite a smooth process?
Macro Giovannoli 43:04
Well, I didn’t say I didn’t know honestly and I have much knowledge of the UAE medical system was quite easy, because I see Yeah, it’s well organized. So they tell you everything in advance. I’d say I’ve good people with me, around me that tell me to come up with the right decision for me as well to help me to make the right decision for me. That’s why I didn’t decide to go back to Italy to do the rehabilitation. I did it here.
Bill Gasiamis 43:35
Yes. Okay. How fast.
Macro Giovannoli 43:36
Because the level of service is higher. Unfortunately
Bill Gasiamis 43:41
Okay. Are you still an Italian citizen?
Macro Giovannoli 43:45
Yes I am.
Bill Gasiamis 43:47
Yeah. Okay. So would have been very easy for you to go back there and settle in, for example, maybe with your parents, etc. And go through the process of rehabilitation there. But it was not necessary. You’re already in good hands.
Macro Giovannoli 44:00
Yes, that is definitely. So I decided to be here because I was really in good hands already. And my life is here. So I told to them, why go back to Italy to do what? I mean, I would say nearly have to go through the public system and so forth. So I prefer to be here in the UAE where it was covered by the insurance. So it’s okay. It’s better. I mean, I could not have gotten the same level of support that I got here.
Bill Gasiamis 44:28
Your parents. Yeah in a nutshell. Your parents would be at a similar age to mine or imagine they are in their 70s?
Macro Giovannoli 44:37
Yes.
Bill Gasiamis 44:38
Was it easy for them to come over and settle in the UAE for 6 months? how did they cope? and with you being unwell also.
Macro Giovannoli 44:49
Yeah, wasn’t easy for that. There has been already my father works in aviation as well. So he traveled the world a long time before and wasn’t easy for them. Like you said mainly because something was not a good way to get me here for a good reason. So that took some time to adapt especially to adapt to my situation.
Bill Gasiamis 45:10
Yeah. That was the hard part for me was navigating my parents was hard part the way emotional, they were upset and concerned. I was trying to keep a lot of the people around me calm about the whole situation, even though it was serious, three brain blades brain surgery in the end, learning how to walk again, all that stuff. But trying to keep them calm was the hardest part. For me, it was very difficult, to manage them. I felt like it was a big job.
Bill Gasiamis 45:45
Did you feel like you had to manage people’s emotional response to, your injury or your being unwell?
Macro Giovannoli 45:57
Yes, I have to try to be positive as much especially at the beginning, I tried to be positive, to show to everyone who was committed to my recovery, that I didn’t have any sleep or my mental state. And like you say, try to keep everyone calm and accept the situation that it was I mean, to show them that I knew what I was going through, and I would be able to do it.
Bill Gasiamis 46:27
Fantastic. Now let’s talk about the book a little bit. We spoke about it earlier, just briefly, but tell me about the book. Do you have a title for it? How far along is it?
Macro Giovannoli 46:38
So the title is “Miracle in the Desert”. Because I live in the desert my stroke happened in the desert, because I was running in the desert the day it happened. And so I say it’s like, it’s the journey of self-discovery is about the stroke, but mainly my path of discovering myself, with the way I discover myself and what I learned about myself.
Bill Gasiamis 47:03
Is that the, Is that the miracle part, excuse me, sorry to interrupt. is that the miracle part because you had a stroke in the desert, that’s not a miracle. That’s terrible.
Macro Giovannoli 47:12
Yes, but the miracle in the desert is that in the desert, I learned to know myself better compared to what I was before the stroke. The stroke helped me to understand myself, I wanna put it this way.
Bill Gasiamis 47:26
It helped you to understand yourself better.
Macro Giovannoli 47:29
Yes.
Bill Gasiamis 47:30
Which part of yourself? Did you understand better the part that was getting in the way? Or the person who was resilient and able to achieve much, much greater things? Who did you discover or learn about?
Macro Giovannoli 47:43
Well, I discovered that I can be positive. I wasn’t positive. Before the stroke, I was quite negative. I like I told you before didn’t have much faith. So I discovered that I could have faith, I believe in myself much more compared to the beginning. And like you said I probably discovered resilience that I didn’t have to have. I didn’t have so much self-love, as I have today to myself, and then discover new things. I mean, I started learning and loving more things than before. I loved myself more.
Bill Gasiamis 48:25
Yeah. Did your life partner become surprised? The way that you’ve handled this? Have you? Have you had discussions about that?
Macro Giovannoli 48:36
Yes, she enjoyed it because she tried to be supportive of me since the day one stroke happened, She has always encouraged me to gain back to faith. And look for the help that I didn’t have in faith. And she was, she’s really happy. She’s my support. She was the first person who told me to write the book. She’s supporting me for this. She’s holding my hand every step I do my recovery.
How far along is the book of Macro Giovannoli
Bill Gasiamis 49:04
Yeah. Fantastic. And the book, How far along is it? Which language are you writing it in?
Macro Giovannoli 49:11
I’m writing it in English because I cannot write Italian anymore. After 15 years, I almost lost writing in Italian. So it’s better in English because of the language I use every day. And I finished my first editing. So, it went to the editor just to have structural editing. So now I’m doing the second draft after going for line editing and after I will go for publishing. I am self-publishing because I cannot find anyone to support the publishing of the book so far. So I’m going to self-publish so hopefully in a few months it should be out.
Bill Gasiamis 49:49
How long ago did you start writing it? because you now see you’re making me feel bad about myself. It’s taken me four years to get to this point. How, how soon how long How long has it taken you?
Macro Giovannoli 50:02
It took almost three months to write the first draft. Let’s say you’re worried that you find a technique to write in 45 days or 90 days. So I aim to do it in 90 days. Luckily, I didn’t even have the first draft. I always liked writing but you never knew that I could write a book. Honestly, that’s impostor syndrome, that was always with me. So like the stroke helped me to write, to write the book, I think there is more to be, I try to find I try to keep a schedule of writing at least 500 words every day, and from that, I build up. I mean, it’s important to have a schedule.
Bill Gasiamis 50:44
Yeah, I know how to schedule because I don’t I could never fit in. I struggled a lot cognitively even now, these days, I still struggle a lot. My brain has difficulty processing a lot of information words on a monitor is very difficult for me to process for a long time for many hours. So did you have any trouble in that time writing the book? Did you feel like it was hurting your brain? That’s how I describe it. Doing it was so difficult and so painful that I had to walk away from it for a long time, sometimes weeks.
Macro Giovannoli 51:19
Well, overall, no, because I don’t have any cognitive deficiencies. I always like working after long hours in front of the screen, I feel tired. My work is mainly more mentally tiring. So keeping the work with writing at the same time is tiring mentally I have to say. As you said, sometimes as well, there are days I could not write at all so I’ll just leave it there. I took it down maybe after a couple of days I will live without my site for a couple of days until I can refresh my mind. And continue writing.
Bill Gasiamis 51:59
So you definitely would write most days, 500 words per day, after you’ve been at work all day? already?
Macro Giovannoli 52:10
Yeah, yes. I will write early in the morning most of the time.
Bill Gasiamis 52:15
has that replaced your jogging?
Macro Giovannoli 52:18
Yes, most of the time, yes. I mix it with exercise because I what I will do, I have a structure stationary back beside my table I have, right? So we’ll do like 10 minutes by the intermediate writing, I will go back and forth from one to another.
Bill Gasiamis 52:35
Yeah, that sounds like an awesome thing to do, I decided to write my book in the middle of one of our very long COVID lockdowns, which was, for us it was we were locked down in Melbourne here in Australia, from 2022 to sorry, from 2020 to 2022. For most of the two years, we were in some kind of lockdown.
Bill Gasiamis 52:58
And I’m not sure what it was there, I read that I found something on I Felt Something online, which mentioned one of the pandemics that happened 100 years ago and one of the famous authors and I don’t even know whose name it is, I’ve forgotten completely who the people were in the story. But during the pandemic, in the early 1900s, I think it was called the Spanish flu or something like that.
Bill Gasiamis 53:25
He went to the farm, he stuck himself in his cottage. And he wrote his book and didn’t come out for two years or something like that, to escape the big challenges that the flu or the pandemic was creating. So that’s, that was my idea. That’s how I got the idea to sit there and write it. Previous to that I had done, I had done the research. So I spent around two years developing the idea. And then interviewed the people who helped form the book, who created the background for me to be able to share the story the way that I’m sharing it.
Bill Gasiamis 54:09
So that whole before writing, the book started it took about two years. And then I finally decided on the pandemic. Because we had so much spare time on our hands, we were at home all the time, we weren’t allowed to work a lot. And as a result, I filled my time like that. I think it helped me get through all those lockdowns and all the challenges of the pandemic.
Bill Gasiamis 54:35
And when we went back to work, finally, the book took a backseat. Because we were back at work and there was less time in the day. And that’s when I found that really difficult to write because I had already been to work for the day, very tired, and fatigued, and then I had to write and I didn’t like what I was writing. And I had to redo it a lot of times. So it was one of the hardest things I’ve ever had to do. It was hard writing this book.
The hardest part of writing the book for Marco Giovannoli
Macro Giovannoli 55:08
But it’s not easy writing, I said, I told you already, there have been days that had to leave the book away from me because I could not write a single word after another. So I will take it that way, it’s not easy. Takes a lot of commitment, I guess. I mean, that I am a memoir, mine is a memoir. So definitely is a lot of self-reflection, like I told you before, it’s like seeing my life from a third person from a distance away, from a larger, larger point of view.
Bill Gasiamis 55:45
Yeah. And it’s also going to support and help other people, which is fantastic.
Macro Giovannoli 55:50
Well, they missed that one. I hope that my story may help someone else. They could find some way also they could approach the ways the same way that you are doing with your podcast. I mean, that’s the end.
Bill Gasiamis 56:07
Yeah, I love it. So recently, I started asking people who listen to the podcast this question. So you’re being interviewed on the podcast, these two questions. And I want to get a bit of insight from a large number of people as to what they think about these questions. So I want to ask you the first one before we wrap up. I want to know, what has stroke taught you? I know we’ve spoken a little bit about all the different things, but is there a deeper underlying lesson that you’ve learned from this stroke?
Macro Giovannoli 56:47
Well, that we have, we are more resilient. The power of, power for what we believe. I mean, we are, we are much more than what we thought or what other people think about us.
Bill Gasiamis 57:00
Yeah, fantastic. And also
Macro Giovannoli 57:02
let’s say, I think we have to be like says, we have to be our superhero sometimes. We are our superheroes. Yeah.
Bill Gasiamis 57:11
Fabulous. And what would you say to other stroke survivors who are listening to this? Maybe they’ve just had a stroke. And like you and me, on the internet looking for information, or for stories or guidance or something. And they found this podcast they’re listening to it’s the first episode they listened to. What would you tell them?
Macro Giovannoli 57:36
I will tell them the stroke is about things that are not fair. Life is not fair. It wasn’t fair to us. But that he could have to wear the stroke suit every day. With the most powerful, we have to be confident life is different, but can only be beautiful. Life is beautiful. In the end, we can make our life beautiful, we have to see the good way of life.
Bill Gasiamis 58:02
Fantastic.
Macro Giovannoli 58:03
Life doesn’t end with a stroke. I mean, it’s not the end of the world. We are not the first we are not the last. There is a way we just find our way now. It’s going to be different. But it may be there is something in our life that you went for a podcast I went for a book and about both with the note that we could do. So maybe that’s what the stroke is brought to us. Different things will be there. We’re both meant to be, we didn’t know.
Bill Gasiamis 58:32
Yeah, different things we never expected. We didn’t know. And here we are. It’s possible for everybody.
Macro Giovannoli 58:40
Yeah, I mean, it is possible sometimes, like you say we have to just believe a little bit more in ourselves and not be afraid to fail because we will always fail. But when we fail like a stroke, we need to learn that we can pivot and change and move forward.
Bill Gasiamis 58:54
Yeah, fantastic. When do you expect the book to be complete and available?
Macro Giovannoli 59:01
I expect a few months before the winter starts that year I would like the book to come out. Of course, my next one would be when I one day I will be back to run because I say I want to back to, run at the ranch too. In my mind that I was going to run because I wanted to run, the K ultra marathon. So that’s the so maybe that will be the second part of the book one day maybe if you have time when they will up.
Bill Gasiamis 59:30
Why not, I’ve interviewed some stroke survivors. One of them very early on in the podcast ran a marathon with foot drop. Donna Campisi, she’s a person from Melbourne who I’ve met here who had a stroke. And it took her some time many many years because she was a child when she had a stroke. She was eight years old. But eventually, in her adulthood in her 40s, She did some training and got to the point where she ran In a 40 Kilometer marathon, and she wrote a book about, it called “The Unlikely Marathoner”.
Bill Gasiamis 1:00:11
So it’s a fantastic idea that you have there to write your second book after you run the marathon. I also interviewed an ultra-marathon runner who started the marathon, ultra marathon running after his stroke. Now, he doesn’t have the type of deficits that you and I described or discussed. But he’s running ultramarathons after the stroke, sometimes 70 kilometers in a marathon, sometimes 80 kilometers.
Bill Gasiamis 1:00:44
Just ridiculous amounts of kilometers. I just can’t understand that. Actually. I can’t even say the words. It’s so unbelievable to me. So if they have done it you’re going to be able to somehow overcome it, and do it and get there.
Macro Giovannoli 1:01:07
Yeah, I also spoke with some people who did after a stroke some deficiency like mine, everyone told me that after a few years, you adapt to your body get a little bit looser, and compensate for some of the deficit and you find your way to run. So I hope in a few years, I will be able to run again, so I can go on the path as well.
Bill Gasiamis 1:01:32
Well done, man. Marco, thank you so much for reaching out and being my guest on the show.
Macro Giovannoli 1:01:40
Thank you, Bill, was a pleasure to join you at the show and I say goodbye ciao to everyone.
Bill Gasiamis 1:01:49
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 recoveryafterstroke.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. If you’re watching on YouTube comment below the video.
Bill Gasiamis 1:02:15
I always respond to all the comments on the YouTube videos like this episode and to get notifications of future episodes, subscribe to the show on the platform of your choice. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 1:02:31
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individual’s opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:03:01
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice the information is general and may not be suitable for your personal injuries, circumstances, or health objectives. Do not use our content as a standalone resource to diagnose treat, cure, or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.
Intro 1:03:26
Never delay seeking advice or disregard the advice of a medical professional, your doctor, or your rehabilitation program based on our content if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly.
Intro 1:03:52
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The post Carotid Artery Dissection Stroke Recovery – Marco Giovannoli appeared first on Recovery After Stroke.
1 hr 5 min
July 24, 2023 The Similarities Of Recovery From A Stroke And A Traumatic Brain Injuries
Christopher Dittrich experienced a TBI (traumatic Brain Injury) as a result of a single-vehicle collision when he was 18 years old. He shares the same challenges experienced by stroke survivors.
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Highlights:
02:00 When Christopher Dittrich crashed his car
10:42 The impact of having half your skull removed?
17:27 Suffering from disinhibition
28:07 College life after the brain injury
33:26 Identity after the TBI
44:07 The importance of not overthinking
54:04 Living life to the fullest after Stroke And TBI
59:38 The reason why Christopher Dittrich is on the Podcast
Transcript:
Christopher Dittrich 0:00
Well, right after injury soon after my injury, I suffered from severe I guess disinhibition, I would say, somewhat, not normal. 18-year-old conversation, I just wasn’t in thinking, you know, I had no filter in my head. So I would say things that weren’t necessarily proper or made sense or was right for whatever conversation and you know, so I lost a lot of my old friends.
Christopher Dittrich 0:27
They don’t get that I’m mentally disabled now. Yeah. So they just thought it was like, yeah, what’s going on? So that ended up becoming a huge benefit for me. As I moved into college, I got a little bit better my filter came back a little bit, but at the same time, I still had very little social filters, which made it easier for me to talk to people to make new friends.
Intro 0:58
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.
Bill Gasiamis 1:11
Chris Dittrich, welcome to the podcast.
Christopher Dittrich 1:15
Thank you very much. I’m excited to be here. You got my last name correct. Not many people do so well. It’s a good start. Yeah.
Bill Gasiamis 1:23
Every once in a while I do get names correct. But you’re not a stroke survivor, but you are somebody who has a traumatic brain injury. And when you contacted me about whether or not I speak to people who are not stroke survivors on the podcast, I don’t often because they often don’t get in touch. And then when you contacted me, I knew that we were going to share a lot of similarities about how our particular brain injury has impacted our lives.
When Christopher Dittrich crashed his car

Bill Gasiamis 2:00
But I know that we’re going to share a lot of things in common and I know that people with traumatic brain injuries do have similar challenges in the same challenges that stroke survivors have. So why don’t you tell us a little bit about what happened to you first?
Christopher Dittrich 2:13
Correct. Yeah, exactly. That’s why I was interested in talking to you as well, because many of the people I’ve discussed injuries and whatnot with our stroke survivors, seem to be a little more common in the young survivor community. I am from the Princeton area in New Jersey, in the United States, I suffered a traumatic brain injury in a car accident when I was 18 years old, on March 3, 2008. What, over 15 years ago now as crazy as that seems.
Christopher Dittrich 2:52
It’s been a whirlwind, but was just trying to beat my friends to lunch in school. And flipped my car over slid across the road and didn’t break any bones. But I hit my head hard enough to not wake up for a month. And then when I did gradually started to recover. I went from a coma to a vegetative state. So it wasn’t just like one of the Oh, you’re awake again, you can do this.
Christopher Dittrich 3:25
No, it was another month of change before I could even grasp any sort of intellect from where I was or what had happened to me. But ever since then, you know, it’s been Go Go Go. It’s never been a where we’re feeling bad for ourselves. But it’s always been about what can we do to start getting better to start living life again, you know what I mean?
Christopher Dittrich 3:53
I think from the beginning when my brain was still in really bad shape. You know, I had heard doctors saying, after one year are going to be mixed reviews. One after one year, you’re going to be good to go or after one year, there’s no more recovery. So from the start, it was okay, I’ve got to do as much as I can as quickly as I can.
Bill Gasiamis 4:20
Tell me about what you will do in a rush to get to. So I know. In America, it’s a bit different than Australia In Australia. We didn’t get our car license till were 18 and very few of us have our license at 18 our car is related but in America, they start at 16 Right? Yeah,
Christopher Dittrich 4:41
I believe that state-by-state changes but in New Jersey, where I was from, I got my learner’s permit. I got my permit at 16 and a half, I’m pretty sure and then got my real license when I was 17. And then when you are rewarded for being a senior in high school where I was living, we were allowed to go out for lunch.
Christopher Dittrich 5:07
Instead of having instead of being stuck with the school lunches in the cafeteria, we were able to go out to have lunch around the town, it was a small town. So I was, again, I can’t remember this now. But from what I surmised and what I was told by other people, I was trying to beat my friends to Taco Bell. And obviously, I lost that race.
Bill Gasiamis 5:32
Just being irresponsible in speeding I imagine and not paying attention to the road.
Christopher Dittrich 5:40
Right. Yeah, that’s exactly what it was, and ended up hitting a tree and breaking the tree in half on the other side of the road. But thankfully, I was the only person in the car. You know, usually, I would have gone to lunch with other people. We had a carpool, we were 18-year-old high school students, trying to save gas, money, whatever it was.
Christopher Dittrich 6:08
But for some reason, I was by myself. And it was a single-car accident. So I didn’t injure anybody but myself, you know, and that means something to me because through the 15 years, and through all the fortunate successes I’ve had, everything would have been kind of hindered or drawn back if I had injured somebody more severely than myself or killed somebody.
Christopher Dittrich 6:35
Or at the same side, you know, if they were okay. With no injury whatsoever you know, cuz I, you don’t mean to be competitive or what, but you always want to be the best and I would have been, let’s just say it was good that it was a single car accident.
Bill Gasiamis 6:57
I know what you’re saying. It’s brave of you to be that honest. And to say that it would have been difficult if there was a collision, there were two people involved, and the other person got away with it was doing well. And you weren’t, you would have cried why me?
Christopher Dittrich 7:16
Exactly. You know, and you don’t want to feel that way. But, yeah, it goes both ways. Because at the same time, I could use that as additional motivation if necessary. You know what I mean? Because there’s always somebody that you can look and be like, Oh, if I keep working hard if I keep on the path, I can get there, too. Yeah. So are you up to in a way?
Bill Gasiamis 7:43
Yeah. Yeah, I hear. So when, when you had the collision and you hit your head while you’re wearing your seatbelt. Or there was no seatbelt.
Christopher Dittrich 7:52
Thankfully, I had my seatbelt on. And what the EMTs told me is that I was sitting in the car normally, but um, knocked out of course, so I think the car flipped. I hit my head on the top left side of the, again, Australia, you guys drive on the left or the on the right, steering is on the left or the right, on the right. Alright, okay.
Christopher Dittrich 8:19
So we’re, it’s on the left in the state. So I popped my head and hit this side of my head. And, again, other than that, it was smooth, with no broken bones, nothing that would paralyze me that couldn’t be recovered. Again, I was paralyzed. When I woke up, the right side of my body was paralyzed. But again, it was, little by little, that I started to be able to move again.
Christopher Dittrich 8:50
And that’s what the doctor said, that’s what my dad who did ours in the days of research saying, hey, Neuroplasticity, if you want to get better, you got to start moving as much as you can move your fingers, move your leg, move your hand, whatever. And that’s where the stroke and a brain injury start to come together.
Bill Gasiamis 9:12
Yeah, so with your brain injury recovery, yeah. So you hit your head, but what did I say happened to your brain? Like what was the damage done? Was there a specific lesion or a specific was there internal bleeding? What was there?
Christopher Dittrich 9:26
No, no bleeding it just, hit my left temporal lobe. And again, this is where I guess it goes a little bit different than a stroke is that it was just I know internal bleeding. Just I hit my eye. Yeah, just brain trauma. Yeah, to my left temporal and then they said that a little bit of repercussions in my right frontal lobe because my head was shaking.
Christopher Dittrich 9:54
My brain was shaking inside my head. But yeah, and then No hemorrhaging no nothing like that. Fortunately, you know, you see several people with brain injuries or with strokes as well that they need to have. When if their brain swells too much, they need to have parts of their skill skull cut, to allow the brain to continue to swell until it starts to heal.
Christopher Dittrich 10:20
Thankfully, I just have a little bit of a scar only from where they put the monitor to check in to ensure my brain was not swelling to the point where I had to have anything cut off to read. Yeah, exactly.
The impact of having half your skull removed?
Bill Gasiamis 10:42
Yep. So it’s a common thing in stroke is in one of my coaching clients is just had his scalpel back in. And my god has, you know, had one-half of his head pulled back in just a couple of weeks ago. And it’s amazing. He looks far happier. Do you know?
Christopher Dittrich 11:02
It seems I could imagine. Yeah, yeah. Yeah.
Bill Gasiamis 11:05
Right. Seems like there’s a lot of progress that he’s made in that short amount of time. Everything is looking on the app, you know, so it’s a big deal. But what an amazing life-saving procedure to be able to cut half the skull off, and then put it aside for a little while while the brain does. Oh, yeah.
Christopher Dittrich 11:23
Well, well, when what they told me because I would always be when they would, people who had their skull off, they always be wearing some sort of a helmet. It was always a blue helmet for at least where I was at Kessler at the rehab. It was I remember wearing a blue helmet. And they said that they would have to keep their skull in their stomach. Yes. Like it was sewed in to keep it alive and keep it. Yeah, hey,
Bill Gasiamis 11:52
yeah. So this particular amount of skull, because it was half of his skull. It wasn’t alive when they put it back in. So they take it out. They put it aside, they store it, but it’s not alive. Now, if the sculpt flap is small enough, yes, they do put it in the person’s stomach so that it contains that remains receiving blood.
Bill Gasiamis 12:18
And yeah, and all the things that are necessary to keep it healthy. And I interviewed a stroke survivor on the podcast that I’m going to find the episode, her name is Leanne, Carla Begonia, and Leanne had her skull flap removed, and it’s in her belly. And what happened was, she ran out of the timeframe that they wanted to do the surgery in to put the skull flap back, which kind of elapsed.
Bill Gasiamis 12:51
And as a result of that, she wasn’t able to have it put back in. And what that meant is that now it’s permanently going to remain in her skin, above her belly. And Leanne was on episode 105. And she had an amazing story to share.
Christopher Dittrich 13:24
When I hear stories like that, when I hear you know, it just I our injury, my injury was severe, whatever and I was in the coma, paralyzed, whatever. But you know, I’m so fortunate I’m so grateful to be able to be where to have been able to recover to this point, you know, that it gives me so much gratitude and feeling of hope and wanting to continue to improve even further. Because I feel like I have the opportunity to.
Bill Gasiamis 14:01
So then in your head from the collision and hitting your head on the car frame I imagine or the car roof what happened Did you get some cell death is that what happened in that location with a trauma?
Christopher Dittrich 14:15
Yeah, it must have, exactly. Just millions of brain cells were killed instantly the ones that control thought rates on the right side of my body. So again, when any kind of movement that I could get from the beginning right there back after my injury in 2008. It starts to generate new cell connections between them again, as many of your viewers will know the beauty of Neuroplasticity is that other neurons are recruited over to the injured part and they can restart and theory retrain so that we can get better we can start moving again.
Bill Gasiamis 15:05
So when you come out of the hospital, you need rehab to get the left side is that the left the right side, the right side, the right side, and the right side up and running again. What else were you dealing with? You’re dealing with deficits. What else? Were you dealing with fatigue? What other issues did you have?
Intro 15:24
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? 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 15:48
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 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 16:07
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 16:26
Hello, and welcome to the Recovery after Stroke podcast. 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 is be a stroke survivor, or care for someone who is a stroke survivor or you’re one of the fabulous people that works in a space that helps other stroke survivors.
Bill Gasiamis 16:50
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 and make and choose a time that works to meet over Zoom. In episode 260 of the Recovery after Stroke podcast, I’m joined by Christopher Dittrich, who is not a stroke survivor but a TBI survivor, and traumatic brain injury survivor. And in our discussion, we discuss amongst other things, the similarities in recovery from a TBI and a stroke.
Suffering from disinhibition
Christopher Dittrich 17:27
I have everything Yeah, fatigue, executive function issues, a whole lot of everything. But again, the biggest thing for me was physically well, right after my injury soon after my injury, I suffered from severe I guess disinhibition. So I would say more through messaging through texting old friends from high school and stuff, I would say, somewhat not normal. 18-year-old conversation, I just wasn’t in thinking, you know, I had no filter in my head.
Christopher Dittrich 18:03
So I would say things that weren’t necessarily proper or made sense or were right for whatever conversation and you know, so I lost a lot of my old friends because of that because at 18 years old, it’s you don’t understand, necessarily even I’m looking at it from the other person, my old friend’s side that like they don’t they don’t get that I’m mentally disabled now. Yeah, so they just like yeah, what’s going on, keep them off to the side.
Christopher Dittrich 18:37
But um, that ended up becoming a huge benefit for me as I moved into college. Because I got a little bit better my filter came back a little bit. But at the same time, I still had very few social filters, which made it easier for me to talk to people to make new friends. When I moved to Cohen, I went from New Jersey, I spent 18 months in rehab in New Jersey after my injury just to get well enough to go to college.
Christopher Dittrich 19:16
And I moved to Miami. And I knew everyone on campus because I was the friendliest guy. After all, I would just start talking to everyone. Didn’t matter whether you were a lot of football players that were very popular football players out there were all my good buddies. Anyone else it was so I used it to my advantage still until today even meeting new people and being friendly and being social and getting things done because of it.
Bill Gasiamis 19:51
Yeah, it’s the way to be. Do you feel like that filter is still not there?
Christopher Dittrich 19:56
I have to actively put it back on. So there was the time in two in 2008, and 2009. I had no filter. And I didn’t even think about what I was saying or what I was doing. But now it’s there. I don’t have it. But I can put it back. I don’t have it naturally, I guess. But I can put it back on myself. I know I know what I shouldn’t be and should not be saying.
Bill Gasiamis 20:24
The response of people that you’ve said or done the wrong thing.
Christopher Dittrich 20:28
All right. Yeah, exactly. Yeah. But thankfully, we’ve moved forward in gotten a lot better with all of that. Yeah.
Bill Gasiamis 20:38
Wow. It’s interesting because you hear about some stroke survivors, who experienced a condition called the pseudobulbar effect. And for some people, it makes them cry. I had it, for a few months, wealth for a few years where I’d cry uncontrollably for no reason, every so often, right?
Bill Gasiamis 20:59
And a lot of stroke survivors say the same thing. One of the other versions of the pseudobulbar effect is to laugh uncontrollably, and usually at the wrong time. So like at a funeral or, you know, at a mass or somewhere where you’re not supposed to.
Christopher Dittrich 21:16
Not good.
Bill Gasiamis 21:20
So it’s interesting how people with brain injuries have that kind of level of altered ability to respond according to you know, the appropriate way for society, you know, what is normal for society? would normally you would avoid it and you would go out of your way to do it? Was it difficult to find yourself having done or said the wrong thing? And then to try and to try and sort of backpedal out of it? Was there any opportunity to get out of it? How does that weigh?
Christopher Dittrich 21:55
Some Sometimes there was sometimes not, you know, I still have a few of my friends from back then people who are understanding, you know, it all came down to the other person, whether or not we would remain friends and stuff. But we, more importantly, if they didn’t understand we move forward, we keep going, you know, I made a mistake. But if they’re not understanding, then I don’t need them, I guess, or just not a match. But I figured out, you know.
Bill Gasiamis 22:29
So but when you got injured at what part of your schooling was that? Was that near the end of your high school?
Christopher Dittrich 22:38
I was. I had just started while it was my second semester of senior year of high school. So I had already finished applying to all my colleges, you know, how it is in the US. And, you know, my parents, unfortunately, they were the ones who had to open up all my acceptance letters, because I was in a coma at the time.
Christopher Dittrich 22:59
So, thankfully, I had already taken my standard, my SATs, I had already applied to all the colleges, so I’d done all that stuff. Second semester of senior year in the US in high school, it’s just late Elisa, it’s yours. Yours. Extended spring break, if you could say you could call using the phone. Right, exactly.
Christopher Dittrich 23:24
And so I was still in some of my videos if you’ve seen I still participated in high school graduation. That was my first. I call it my coming out party because that was the first time I walked. I mean, everyone knew about my injury, but they didn’t know if I could walk I was in a wheelchair and wheeled up to the stage.
Christopher Dittrich 23:50
And with my dad helping me I limped with a four-prong walking cane across the stage to a rousing standing ovation, to get my diploma. And that was kind of my like, let’s go, let’s go. Let’s go kind of a moment to set up for the next year when my friends went off to college and I stayed home to get well enough to go to college, hopefully, the following year.
Christopher Dittrich 24:19
Which I did and then college that freshman year of college was another huge undertaking. I had vastly underestimated the amount of physical strength I would need. So, freshman, I was in really bad shape. Hard to walk and hard to do anything because I moved down to Miami, it was the summertime. It was hot. It was humid, it was very challenging.
Bill Gasiamis 24:50
So do you find the weather impacts you differently now than it did? Say beforehand, do you recall if is there a difference?
Christopher Dittrich 24:59
At all? Hot is hot, you know? Yeah, I, if it’s too humid, it sucks, but I can get through it, it won’t tire me out too much. But I will, I’m more apt to sweat than I was before my injury from what I remember, just because it takes just a little more effort for every step that I take.
Bill Gasiamis 25:22
Right. And, with regards to your schooling, when you were at college, we were able to get through all of the things that were required of you as a student cognitively.
Christopher Dittrich 25:38
It was certainly much more challenging. I because when I was in high school, before my injury, I was very good at taking tests, I was intelligent, and my memory was really good. So when I went off to college, I just assumed it would be kind of the same way. And it was not I couldn’t remember anything. I would try to read the textbook, I’d get through like a couple of pages.
Christopher Dittrich 26:06
And I forget what I had just read. So I went with the strategy just didn’t know any reason to read the book. Well, if I can’t remember it anyway, what the hell am I doing wasting my time reading the book? So my grades certainly weren’t as good as they could have been. I went to Miami. As an honors student, I was x I was given a big scholarship and I was supposed to keep a certain GPA.
Christopher Dittrich 26:39
And I couldn’t keep, that above-average GPA like I would have had I not suffered my injury. However, I learned the value of asking for help and becoming friendly with my professors and not to the point where I’m asking for unfair treatment.
Christopher Dittrich 27:01
But I got the professor to get to know me. I wanted them to know about my recovery and my injury, and I certainly feel like I got graded better because of the individual relationships I built with my professors. I was no longer they were no longer just grading a name on a piece of paper. They were grading me personally.
Bill Gasiamis 27:26
So that was a little bit leniency.
Christopher Dittrich 27:30
Oh, certainly helped me get better. Better. I got a lot of minuses. It was always Oh, that was my favorite grade to get because I always felt like I got an A minus I deserved a B. But they wanted but I earned the B they wanted to but they couldn’t give me an A but they wanted to so I just got an A minus. I always laughed. I got a lot of minuses in college and it was always that I was like, Oh, yep, for sure. 100% should have got a beer a B plus but oh, a minus for him. That’s okay.
College Life after a Stroke And TBI

Bill Gasiamis 28:07
Now college life in the United States is notorious for its wild parties, big drinking sessions, and all that kind of stuff. Did you partake or did you have to sit aside?
Christopher Dittrich 28:19
I didn’t partake as much as I would have imagined. I started in a fraternity but I couldn’t do the fraternity I wanted to be fraternity life. My father was a big fraternity guy so through my childhood, I was always like, oh, I want to do the same frat thing. But it didn’t work out for me just because I couldn’t.
Christopher Dittrich 28:45
It was too much on the side, I had to concentrate on school and I had to concentrate on physical therapy. Those were the only important things in the end. I still spent two years living on campus and then when I moved I moved off into the actual city of Miami for my junior and senior years and then I would have said it’s a fun city to live in.
Christopher Dittrich 29:10
Especially when all your classes are not until the afternoon so you can you’re welcome to stay out as late as you want because it’s not waking up early in the morning. So had a lot of fun times just at the bar nothing crazy but meet a lot of met a lot of people again with the same strategy just start talking to people you know, just make friends and it was good. Yeah, Miami has fun.
Bill Gasiamis 29:40
Did so tell me a little bit about frat life because as an Australian, I don’t understand what frat life is about what are the expectations or what are the over-and-above things that you have to do and add to your routine.
Christopher Dittrich 29:53
You spend time with your frat brothers you know you got we didn’t have a house but we had a Sweet over there and it just for a lot of people it works out but it just didn’t work out for me just didn’t again have it’s a big commitment for meetings after school in the evening time, then you’re going out drinking with your buddies and things of that nature that I just couldn’t prioritize when I had so many other priorities still two that were more important to me. Again, my continuing physical recovery was the largest one.
Bill Gasiamis 30:33
So the fraternity isn’t necessarily the extracurricular activities associated with your studies.
Christopher Dittrich 30:42
Oh, no. It’s for fun, it’s for brotherhood. Yeah, it’s part it’s party time. Yeah, it’s not for at least most schools. I again, was only in it for a little while. It didn’t last for me.
Bill Gasiamis 31:00
Yeah, I hear you. So you don’t mind meeting people said, so. Are you the kind of person who struggles with these spices? Did you have any issues with sensory overload? Any of that stuff while you were in that early days of recovery? And how did you manage?
Christopher Dittrich 31:23
Fortunately, that was never an issue. For me, the only problem that I had socially was that I would meet people, and then I would forget that I would meet them. And I would, again, that was just because my short-term memory was very poor. Still, I wouldn’t remember names for anything. But um, I would just meet a person one day, and then a couple of days later, go up and say the same thing and meet them again.
Christopher Dittrich 31:53
And they were like Yo, we just met and it would make me feel rather bad. I would feel stupid. I feel oh, gosh, yeah, this sucks. So again, I had to adapt. And instead of meeting people, for the first time, when I wouldn’t meet somebody, I would just go up and pretend we already know each other. You know what I mean? So I wouldn’t be Oh, hey, what’s your name? What’s up? And just pretending that if we had met before, and now you’re not going to know that? I don’t remember you.
Christopher Dittrich 32:29
If that you know, and now if we haven’t met before, it’s just me being friendly. But if we have met before, and now you’re just like, Oh, yeah. Hey, it’s nice to see you again. So it was a strategic kind of shift. Yeah, and again, that’s the big thing with I think both stroke, recovery and brain injury recovery. It’s all about finding where you can make a change that starts to impact your recovery and your life in general.
Bill Gasiamis 33:03
It’s about adapting, isn’t it?
Christopher Dittrich 33:06
Yeah, adapting is exactly great. I’ve been forced to become a king adapter physically and mentally and everything, because of our newfound skills are what we no longer possess and what we now possess stronger than before.
Identity of Christopher Dittrich after the TBI

Bill Gasiamis 33:26
Were you the same kind of guy before the collision? Is it a different version of you? That I’m speaking to now? Do you know what I mean?
Christopher Dittrich 33:39
I again, was only 18. I was still young. I mean, I still have some of the same friends. And I still think I’m mainly the same guy. But yeah, again, I was younger still. But I think so most of the mostly my personality itself didn’t change, I got more outgoing, because of the filter, the lack of filter or just more of a much more so have zeal for life. And now because of everything that I’ve had to overcome everything I’ve had the opportunity, the life that I’ve been able to live, it makes me more excited for every day.
Bill Gasiamis 34:24
So a lot of people have an injury like yours, and it’s visible because they have a deficit on one side of their body. A lot of them tend to get the opposite of more outgoing. They become more introverted because of their injury. They’re afraid of how people will judge them or what they’ll think of them, etcetera. Does any of that stuff pass through your mind Did it ever?
Christopher Dittrich 34:50
Maybe when I was younger, but I used it to my advantage because when I’m going up to meet somebody new, you know I don’t come off as a threatening figure. And in a way that helps out, you know, because it immediately throws off any feeling that the other person has to put up a protective shield or anything.
Christopher Dittrich 35:16
No, I’m me, you know, I’m coming to you with everything that I have to offer. And I’m very confident in myself, it’s going to be to your benefit, the person that I’m coming to meet, it’s going to be to your benefit, if you’re going to give me the up the time of day that I’m going to say something or just by being around me and my zeal for life passion, that you’re going to have a better day than to because we’ve had a good conversation. And that has helped me to meet people and to build better value self-value as well.
Bill Gasiamis 35:58
That’s brilliant man.
Christopher Dittrich 36:01
For anybody that’s going to listen to this that’s feeling very shy or very whatever from their injury, think of it exactly like that, you know, everything that you have had to overcome, that’s all part of you that other people have, hopefully, they’ll never have to face it. But we can teach them we can share, our experiences with other people to make everybody a little bit more knowledgeable, a little bit more understanding and hopefully motivate them to be a better version of themselves as well.
Bill Gasiamis 36:38
Yeah. It seems like you take it all in your stride the dark days did you have difficulties and times when things were really bad?
Christopher Dittrich 36:49
I’m back more so towards the beginning, I guess there were times when the back when I was in my acute recovery first year or so because I didn’t This was before it’s a little bit but this was both Facebook was here, but Instagram was not there. I didn’t have a community yet. You know, I didn’t have anyone to look forward to and be like, Oh, well, I can still get better.
Christopher Dittrich 37:17
You know, yeah, I can still live a whole fulfilling life. I was stuck there. I was lying in my bedroom in New Jersey with the right side of my body wasn’t working. And occasionally in our rehab, our outpatient rehab, they would bring back success stories. Like they would bring back old, old patients, and what I experienced I didn’t they weren’t doing that.
Christopher Dittrich 37:48
You know that the people that they would bring back and like parade around like, Oh, look at he was in our he would He’s a proud veteran of our outpatient therapy. And I’m like, they’re physically there. Okay, but mentally, it wasn’t always all the way there. And I’m like, Wait, is this it? Do you know?
Christopher Dittrich 38:07
So that’s why I’ve taken so much pride, I guess, and effort in starting to build the page on Instagram and things like that, because I want to be the person that I didn’t have in 2008 and 2009. Or I or I could have had them if Instagram was around. But it wasn’t. So I didn’t have the opportunity to look and see people like living overseas and living abroad and living a life like there’s no, disability. I’m disabled, but I’m not disabled.
Bill Gasiamis 38:47
Yeah. Look, I think what you’re saying is common for people like you and me who had an incident that was say, around 10 years ago, plus, because everything was fresh. All the socials were very, very fresh. But still, I’m meeting people now who are saying that they left the hospital and they kind of fell into the gap after the hospital what do I do? How do I go about my new body or my new brain or my new whatever? And they struggle a lot.
Bill Gasiamis 39:19
And at some point, they do go, I know, let me jump on the socials or Google and let me find out what’s available. And the way that I get found the lies people will search for stroke podcast, you know. And then the podcast comes up and then and then they go, Oh, wow, there’s 250 episodes.
Bill Gasiamis 39:42
And then it’s like, oh, wow, all of a sudden they don’t feel like they’re doing it alone. Now there are at least 250 people that have done this before them that are all going through different phases of recovery and have different challenges, but they’re all moving forward.
Christopher Dittrich 39:58
And right. Yeah, and it’s a nice thing. And that’s it’s a very cool thing you know. And another reason that I didn’t fall into a gap like that after my injury, I’ve had phenomenal family support. Both my father and my mom and my dad, my dad especially were the ultimate patient advocates that always there from the beginning, they were in, and they spent every night with me when I was living in the rehab.
Christopher Dittrich 40:31
They didn’t have a very comfortable bed to sleep in, but they stayed with me, you know, it was always having someone there. So I’d never had the opportunity to fall into that rut. And for anyone, that’s, again, going to watch this, that if it was someone in your family, or your close friends that suffer an injury or stroke, or brain injury, or any kind of injury, that your support for them is equally as important as how much I can do physically, I’ve been far more motivated, because I’ve got people in my corner.
Bill Gasiamis 41:12
Community and people in your corner are important, especially when, you know when a lot of people don’t understand you. That’s where the community aspect of it is really important. When you meet people that are like you who understand what you’re going through and can relate. Right, and, and then you don’t and then you don’t feel so strange or weird or different. You feel like a different version of yourself. But other people know what I feel like I can explain it to somebody get it off my chest, and they and they know exactly what I mean.
Christopher Dittrich 41:46
Yeah, it’s, it’s very helpful. It’s yeah, it’s very motivating for me and anyone overcoming an injury.
Bill Gasiamis 41:56
Did college go smoothly did you end up graduating and finishing off that chapter?
Christopher Dittrich 42:05
I did graduate in four years, I took summer courses to have a reduced course load instead of five courses. I took four courses every semester so that I had a little more time for exercise. And then in the summertime, I’d go to community college back home, and I got some extra credits from there than I but and I went, I was able to go abroad. I went abroad to Beijing during one of the summers and spent a month in Beijing.
Christopher Dittrich 42:38
And it was amazing. That was my first real overseas travel. I went with my family before my injury. But that was when I felt like yeah, I could do this. I can live anywhere in the world. Because I survived that trip to Beijing that summer in Beijing, which was crazy and amazing. And then the following year, I did another study abroad in the summer in Ecuador, the Galapagos Islands.
Christopher Dittrich 43:11
So I took advantage of every opportunity to go to different places. And in the end, was able to graduate after four years again, not with a GPA not as high as I would have been before my injury, but I was able to graduate.
Bill Gasiamis 43:30
Was it? Did you have reservations about going overseas on your own and being independent?
Christopher Dittrich 43:37
Not at all. I had to work hard to convince my teachers, and my professors that I was capable and that I was able to go. And then when I got there, I realized, oh, shit, maybe I should have thought about this a little bit more. Especially that first trip to Beijing, because we were going we were going to class a little bit. But then we were going on tours to the Great Wall and Hide. Fortunately, I had been there already with my family before my injury.
Christopher Dittrich – The importance of not overthinking

Christopher Dittrich 44:07
So I wasn’t there to tour I was there to learn and to get college get credits. But I had vastly, again underestimated the amount of physical effort it was going to take. I couldn’t do it. So after two weeks, we were going leaving Beijing to go to Shanghai, and I said Hey, Professor Chen Lau sure is what you would say, Professor Chen. I not going to continue. I’m going to stay here. I can’t continue with the class. I’m going to stay here.
Christopher Dittrich 44:42
My dad is going to come out we’re going to Yeah, so I ended up staying in Beijing my dad didn’t come I stayed in Beijing on my own for those additional two weeks. And that was when adaptation was 100% You know, I was able to continue with a private tutor made friends had the best two weeks ever just not having to walk around too much just being able to go to class going back and forth staying on the campus.
Christopher Dittrich 45:15
It was incredible ended up being incredible. Right? But um, but again, like, with reservations Never, never. And that has, it’s made life a little more made experiences a little more challenging for me, but it’s made me much stronger. Because I was it’s a common thing. Oh, do I want to do this? Yeah. Is there any thought about maybe not? No, no, no, no, no worries at all, no concerns until I get there and like, oh, oh, shit. Maybe I should have thought this through a little bit more.
Bill Gasiamis 45:55
I like that approach. If it’s a calculated risk, and you’re just going overseas, and you’re stretching yourself a little bit. It’s no big deal. And I like that and not overthinking it. I mean, if you overthink things, to convince yourself out of amazing opportunities, and you commit yourself out of opening new doors and experiencing new experiences and meeting new people, and that’s the thing about, you know, not putting too much thought into it.
Bill Gasiamis 46:18
I think it’s great it’s a great personality trait to be able to if it’s about experiencing having a new experience, I think it’s a great thing not to overthink, if it’s about, you know, should I invest? My last $100? Alright, yeah, a little different. Yeah, yeah, you should think about that a little bit more, you know, if there’s nothing else.
Christopher Dittrich 46:40
We made some mistakes on that side, too. But, I agree with you and that’s what led me to Bangkok as well, where I am now. You know, I mean, after college graduation, I started working at a banking institution because, before my injury, finance was the route. And so I went through college and got my finance degree. Then I realized sitting in an office for 10 hours a day by myself. It wasn’t right, I couldn’t do it.
Christopher Dittrich 48:39
So I went back to graduate school for hotel management because I liked the traveling all the traveling that I had done in college, um, and being able to speak Mandarin and learning some Spanish when I was in Miami, you know, I want to leave, I want to be able to live talking to people and being able to live around the world potentially. So I went back and got my master’s degree in hotel, Hospitality, and Tourism Management. I applied for a job.
Christopher Dittrich 48:39
I interviewed for a job with a worldwide posting. didn’t hear anything back for two months and then one I think it was December 23, 2015. I still remember waking up to an email from a hotel in Bangkok. Chris, we got your information from the Alcor portal we’d like to interview you did an interview the next day via Zoom or I think it was Oh no, it was only Skype back then in 2015 no Zoom had we hadn’t gone through COVID time yet so zoom didn’t exist.
Christopher Dittrich 48:39
And then they interviewed at night and then woke up that next morning? I think it was now yeah, it was Christmas Eve now I’m on a job offer in Bangkok we want you to start your first day of work on January 18 or something like that. Like only in three weeks. They wanted me to move in like three weeks. And right away.
Christopher Dittrich 48:39
It wasn’t even a thought, Okay, we’re doing it. You know, again, I’ve got phenomenal family support. They trust my decision-making for the most part. Yeah, they realize that I can adapt and do whatever I don’t put myself in too much danger or risk. But I was like, Yeah, we’re doing it. So three weeks later, boom. I was here in Bangkok. And I’ve only been I’ve been home a bunch of times, but I’ve been living here now happily and free since 2016. I feel incredible about life in general.
Bill Gasiamis 49:34
Yeah, that’s great, man. Well done. Yeah. What’s the position involved? What does it do you have the hotel manager’s role what does it involve?
Christopher Dittrich 49:44
Oh, well, I’m no longer working at the hotel. This was a couple of years ago now in the element of a private craft beer business entrepreneur. I went back to the business side a little bit, but the hotel was awesome because I was A guest service manager, I was just talking all day I was using it was all the new skills I’d picked up since my injury.
Christopher Dittrich 50:08
Because I was I was unrivaled. With my approach in the hotel lobby with meeting guests. Speaking in Mandarin speaking in several different Asian languages all at one time tie, of course, Korean and Japanese, didn’t matter where you were from, I was going to be able to connect with you, just like I had done. In college, I used the same skill set that I had adapted and picked up when I moved to college. When I moved to Miami, I was doing that same thing now working in the hotel in Bangkok. And it worked exceptionally it worked well.
Bill Gasiamis 50:46
Customer if you can’t talk and you’re a customer-facing individual, yeah, you’re going to struggle a little bit.
Christopher Dittrich 50:53
You know, and again, it was a little bit of a struggle more of a struggle here in Asia, people will stare much more so relentlessly than in the United States. But again, I used it to my advantage because I’m confident in myself and I’m able to if the hotel guests are going to give me the time of day to do more than just saying, Oh, hey, how’s your stay with this? How’s your room?
Christopher Dittrich 51:21
I was having real conversations with these guests. They weren’t expecting it, but they ended up getting a whole life-altering life-enhancing storied experience when they were staying in my hotel. Yeah, so it worked out well.
Bill Gasiamis 51:38
So do you feel like culturally there’s more of a stigma around disability in countries? In Asia, for example, compared to the United States?
Christopher Dittrich 51:48
Yeah, I did an internship in Hong Kong in China and Hong Kong. Big time here in Thailand. I shouldn’t yeah, here in Thailand. No. In Thailand, this place is amazing. Everything is. Culture is incredible here just like everything is everything. My primary cop is Oh, never mind. No problem. Nothing wrong. Yeah, it’s cool being here.
Christopher Dittrich 52:13
Yeah, everyone is open and easy to talk to. So I’ve found my stride and found myself here in Banca in Thailand in general, and able to travel from country to country incredibly, efficiently, inexpensively, and have had awesome opportunities living here in Asia for the past now, seven full years, which is awesome. And again, makes me proud because of where I am looking back to where I was in 2008 or 2009. stuck there in the hospital. And now living the absolute dream out here.
Bill Gasiamis 52:58
Yeah, absolutely. Man, good on you. Do you feel like perhaps when you were 18, and you come out of it, and you’re out of the hospital, and you’re sort of in rehab, and you’re doing all the different things that you’re doing? And you’re kind of trying to get back to, “normal life” Right? Did you feel like you got away with it, and that you shouldn’t be around? And this is a second chance, like, how did you? How did you mentally deal with that side of the equation?
Christopher Dittrich 53:31
I just always continue to do the best that I can. I was given I was given another opportunity. Certainly, I feel that way. And so I it’s, it’s, again, I don’t know if you are religious or what but I feel like I’d be doing whoever a disservice if I do not continue to make the most of every opportunity in life. You know, even not, you know,
Bill Gasiamis 54:02
More religious that’s important.
Living life to the fullest after Stroke And TBI

Christopher Dittrich 54:04
You know, it’s because I know so many I’ve experienced just through meeting other people that some people have suffered injuries that are nowhere near as serious as my car accident, but they’re not able to live the same life that we can now and of course I feel that and I always have given an incredible opportunity that I need to live life to its fullest to enjoy it and appreciate it.
Bill Gasiamis 54:42
It’s a lot of people do say you know that they were looked after or somebody was looking out for them or this is their second chance. This is the kind of make the most of it that’s you know, there’s there is a lot of that you do hear a lot of that in the stroke survivor community. And I especially feel that way. For me, I’m a completely different person. I’m not the same person that I was before the stroke. Yeah, I have a podcast for God’s sake. And I wrote a book.
Christopher Dittrich 55:10
Yeah you have thousands of viewers Yeah, it’s incredible.
Bill Gasiamis 55:15
Yeah, there are 250 interviews, there’s coaching that I do, there’s a whole bunch of stuff, it has changed my life for the better, so much, and I still live with all of my challenges, you know, and my challenges are mine. And they’re not as bad as some of the other people, for example, when I say as bad, they’re not the same as some of the other people were, but I live with them. You know, they still bother me, they still annoy me, they still do all that stuff. I still wake up every morning.
Bill Gasiamis 55:45
And you know, have to be careful the way I get out of bed and all that kind of stuff. Right? But it’s so much richer, my life so much richer because I took a similar approach to you. And their approach was that what I’m going to do first is I’m going to help other people. How am I going to do that I didn’t know at the time. But I just started to volunteer with the Stroke Foundation here in Australia.
Bill Gasiamis 56:08
And I just started to talk to people about raising awareness about stroke, and then how to prevent stroke. And that’s all I was doing. And that was helpful. But that led to public speaking. And that led to me doing some gigs and speaking on an annual basis at a university where we talk to third-year occupational therapy students. And I go through the process of, you know, my experience with occupational therapy and the good and the bad.
Christopher Dittrich 56:40
Trying to shape the future helpers.,
Bill Gasiamis 56:45
So it’s like, the guy before stroke, didn’t do any of this stuff. Just boring, old, you know, tradie go to work and work and then come home and then catch up with some friends. And the old me was just mundane, just, you know, pretty, pretty mundane. And not, not that I was bad. I had a terrible life for anything. But this is far richer. What I’m doing now is far better. So you know, I know, I know where you’re coming from.
Christopher Dittrich 57:14
Yeah. And, you know, I often think that same thing, like what would be the most different and I will be living an exact ability in a different life. I’ve given a speech in front of a couple of 100 People in single, you know, in freaking Singapore of all places, and yeah, it’s, I would have gone abroad sometimes, but I would never have been living the incredible life that I am now here in Bangkok.
Christopher Dittrich 57:42
I’ve got a wonderful girlfriend, Sue, yeah. And for a couple of years now, and again, I’m going all over the place, and no chance it would have been like this. Had I been living in the US? Or I’m sorry. I don’t want to say that had I not suffered my injury? Had I not been given the opportunity and overcome everything in the experienced life? Much more so it’s inspirational that Hotelling is a great word.
Bill Gasiamis 58:11
Do people tell you you’re inspirational?
Christopher Dittrich 58:14
When I was working in the hotel, I was sharing my story. You know, I’ve gotten to the point now where I don’t other than podcasts, you know where I’ve got my people I don’t need to share it as much anymore which is which I think is a good thing I just continuing with the life you know, it’s nice I’ve found people that understand me and don’t even look at me at all about my injury whatsoever you know, we’re just all buddies.
Christopher Dittrich 58:49
I have American friends ex-pat friends your Thai friends here that it’s not even brought up and It’s because I am confident because I’m continuing to improve physically my walk is continuing to get better I don’t come off as disabled so there’s been no real reason to talk about it and that’s a good thing you know.
Christopher Dittrich 59:15
That’s what we all we are always people with injuries fight to get to the point where they’re not seen as injured or seen as disabled anymore. And it’s fantastic. I couldn’t tell you the last time I had a full conversation with someone about what I’m, I’ve had to deal with, which is a good thing.
The reason why Christopher Dittrich is on the Podcast
Bill Gasiamis 59:38
Yeah. So the purpose of coming on the podcast and what’s the reason behind that? No, I’m glad to have you by the way. But just like you’re not talking about it on a daily but why now, because what I want to do is encourage other stroke survivors to come on the podcast and share and talk about it right? What’s your reason?
Christopher Dittrich 59:58
Well on the podcast for the help of other people to share my experiences because I feel that I’ve, again had incredible opportunities, worldwide opportunities and to be I want to be that person that wasn’t that I didn’t have in 2008 when I was living in the hospital and I didn’t have any idea that what I’m doing now is even possible. It gives other people hope it gives people who have just had their injuries hope to continue to keep moving forward.
Christopher Dittrich 1:00:39
And you’re going to have an I spent a year 18 months in therapy, you know, mundane, doing nothing every day, physical therapy, occupational therapy, speech therapy every day. And I’m so it’s good to be able to come on here now in showing that it helps out that don’t get discouraged. No matter what level you are, and what stage of your recovery you are you can always continue to improve.
Christopher Dittrich 1:01:09
It’s what we didn’t with the stroke. And with brain injury, both you know, the beauty of the brain is it can fix itself, but not just a snap of the fingers. Because you say Oh, fix me fix me because we work for it because we’ve had to work towards it. And if we can continue to do that, then we can live whatever life we want to live.
Bill Gasiamis 1:01:33
On that note, thank you so much for joining me on the podcast.
Christopher Dittrich 1:01:38
Yeah, thanks for the opportunity. It was great.
Bill Gasiamis 1:01:40
Now 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. 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 1:02:06
If you are 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. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 1:02:21
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 1:02:38
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Intro 1:02:54
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Intro 1:03:15
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1 hr 5 min