Vince Holland was 28 years old when headaches he had been managing with over the counter painkillers turned out to be much more sinister than he could ever imagine.
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03:40 Stroke in the 4th of july
11:45 Reversible Cerebro Vasoconstriction Syndrome
23:47 Stroke awareness
27:35 Acceptance after having a stroke
31:09 Importance of community in stroke recovery
34:57 Emotional struggle after stroke
44:18 Physical and mental deficits caused by stroke
51:00 Plans for the future
Your mindset is a really important thing. And if you’re not somebody who’s used to having a positive mindset, it’s probably easy to go into those darker spaces. Even if you do have a good mindset, and you always have had like it’s possible to go to a darker space because you’re in uncharted territory.
And, you know, you have to contemplate things really quickly about what the future is like. And I don’t know about you, but I started to wonder about being able to provide for my family being around for my children being alive next week.
This Is recovery after stroke with Bill Gasiamis. Helping you go from where you are to where you’d rather be.
Bill from recoveryafterstroke.com. This is Episode 81 and my guest today is Vince Holland. Vince was 28 when he experienced a stroke three years before this interview on the Fourth of July and from the outside he was the picture of health, Vince had several days of symptoms that he ignored and tried to manage the headache with over the counter painkillers.
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So take advantage of the seven day free trial now by clicking the link below if you’re watching on YouTube, or by going to recoveryafterstroke.com/coaching, if you are listening online, now it’s on with the show. Vince Holland, welcome to the podcast.
How you doing Bill?
Doing good, mate. Thank you for being here. I really appreciate it all the way from Virginia in the United States of America. Tell me Vince a little bit about what happened to you.
Stroke in the 4th of july
Well, my stroke was three years ago on the Fourth of July and that’s an American, that’s our independence day. So I was with friends, getting to celebrate having dinner and going to see fireworks and just kind of came out of the blue which is pretty wild.
28 years old at the time pretty fit, living an active lifestyle and kind of doing all the things that they say you should do to minimize your risk. And so it still happened.
What particular, what exactly did you notice leading up to the stroke? Did you have any awareness that maybe something was off?
I think on the day, I mean, there were things going on a few weeks before that, only in hindsight, do I look at and think, okay, maybe these are some indicators, the persistent headaches and things were a little bit off.
But the day was completely normal until that evening, and I’m sitting in my parents kitchen, and then my leg start to get heavy and then the sensation starts to dull and they feel like they’re just filled with sand. By the time I would stand up they they’ve just disappeared and I’m just splayed out my parents kitchen floor.
Wow so the headaches were they something like were they severe were they something that you would think, man, something’s not right or did they stop you from doing anything like going to work or just being your regular self?
They’re pretty close to migraine level, like if I didn’t catch them early enough and take some kind of over the counter medication, like it would be terrible to try and drive can be dealing with those headaches or to do with loud noises.
I mean, they were pretty close to migraine level. And again, like I said, in hindsight, it seems so crazy that I was just thinking, Well, you know, take a couple Tylenol, you kind of just go on about your business. But they were pretty intense.
Yeah. Did you go to the hospital in that time?
I didn’t. There was, I think what I now realize that was probably the Tia before my stroke, and I was actually out doing a competition. And we ended up speaking of the EMS and they took vitals and everything like that. But I remember my senses being so fried like everything seemed backwards and distant.
Another time I thought, I’m just exhausted like this is extreme fatigue. This might be heatstroke in the worst case scenario, but I just need to get hydrated, make sure my vitals are fine. And I went on my way, I didn’t even go to the hospital that time a few weeks before my stroke.
What sort of a competition Were you involved in?
It’s like the functional fitness, very fitness kind of things it’s kind of like a CrossFit style. But on a local scale. They host some different things in Washington, DC, so we’re out there doing that, working hard doing strenuous stuff so.
You see somebody who’s fit, you know, perhaps they’ve got muscles or they lean or they’re an athlete or they run and externally everyone sees them and goes, well they’re the picture of health everything looks great. But the reality is we don’t really know what’s going on on the inside.
And of course, being fit probably did help you being active helped you all those things, helped you in your recovery and help you be in a really good place to I suppose experienced something dramatic in your health, but we often judge a book by its cover.
We look at it, everything looks great. And it’s one of those challenges that people live with after stroke is there. Well, you look good man actually you looking good, But then there’s so much stuff going on on the inside where people may look good on the outside.
Yeah, you look so normal. I mean, that still goes on, you know, once you’re, once you’ve had the stroke, and you’re in recovery, but you still deal with so many invisible parts of it.
And I imagine in your industry, slash hobby, whatever it is, when you guys put so much effort into being physically fit and looking well, going back into that space into that zone, they’ve they’ve had something so dramatic as a stroke, people will look at you and go, man, he’s back. You know, we’ve got him back and he’s doing all the things. Surely he’ll be able to just be the same, Vince that he always was.
Right? Yeah, there’s that feeling and it kind of challenges, it’s part of I say the challenges is the challenge on your identity, like your sense of self gets wounded too, because you sort of think of yourself as the things that you can do like not just the whole of who you are, but the things that you can do.
And when that goes away, once you’ve had a stroke, you end up with questions like, Am I still? Am I still me? Am I still Vince like, the idea of who I am I was damaged. And it takes a lot of emotional healing through our recovery, to understand that the reality of who you are is still there.
Yeah. So you’re 28 were you in a relationship? Do you have a family what was happening at home?
Yep. 28 years old at the time of my stroke, and I was in a relationship with my then girlfriend who’s now my fiance. So we are still living together in Northern Virginia. And I was fortunate to be with my family just a few miles from the hospital at the time and my brother is a corpsman in the Navy.
And my mom was she used to be a nurse. And so I think they knew the signs. And so my brother kind of put me through the fast protocol right away. So I was really fortunate. He didn’t panic. And so I think I was able to stay pretty even emotionally at the time I didn’t. He stayed calm, and I think it helped me to stay calm. And then they call 911, might be 999, in some other countries.
000 in Australia.
Yeah. And that’s one of the best things that you can do for someone that you think might be having a stroke is to have that first response team there because they can begin to triage work in the bus on the way over to the hospital.
And so you’ve collapsed at home. They’ve called the ambulance and you were taken to hospital. Immediately. They were suspecting a stroke. So they treated you as a stroke patient on the way there and when you got there, or was there any other challenges that you had to go through trying to work out what actually happened to you?
I think in the ambulance, they just weren’t sure. And they wanted to do all the vitals and get some information about me. But they didn’t have an idea, I don’t think and not until I got to the hospital. And they ran the talk screenings to make sure that I didn’t have anything illicit in my system.
And they even did the different imaging, they did the TEE, they put the tube down your throat and take a picture of your heart from behind. They do the CAT scan, a kind of a Doppler test. So they want all these different kinds of imaging and tests to really know what it was for sure.
But I got there and what they say is like a critical three hour window for someone having an ischemic stroke, so I was able to get TPA. And that made a tremendous difference over just the first 6, 12, 18 hours.
So did you end up finding out what was behind the clot that occurred? Was that an ischemic stroke caused by clot?
It was. And I think that’s why the TPA was so responded so well, because we were able to bring up that clot. And then they were having questions about, well, what caused the clot? Is there a malformation in your heart? And is there some kind of a congenital malformation in the brain with the blood vessels?
So we did get to go on and do additional tests. I went to a second hospital that same evening, and from there was would be discharged to rehab. But there were just a number of tests after that. angiogram and still more imaging, but never did they really determine what caused the clot to pass to my brain and so they just categorize it as cryptogenic stroke.
Reversible Cerebro Vasoconstriction Syndrome
And what we got to do with my neurology team was to narrow down some of the symptoms and we started a course of treatment, as if it were based off of rcbs and as the Reversible Cerebro Vasoconstriction Syndrome. And so we took steps to address that. And it’s been working for me.
So you wake up in hospital, where you lucid? Did you have any idea of what was happening? Or had you completely blacked out?
I’d stayed conscious the entire time, which is part of what made it so surreal. And I think in the beginning, I never wanted to say I knew that I had some suspicion, but I never wanted to say I had a stroke until the doctor came in.
And or I think it was the nurse first who she’s talking to me and she says, Do you know where you are? And they ask all the cognitive questions they can think of, you know, your age, and who’s the president, where do you live? And do you know why you’re here?
And I kind of hesitated and she go because you had a stroke. And like, hearing the words externally, it kind of all fell down on my shoulders at once. And then I had a whole new set of questions just wondering about what stroke recovery meant, because I just had no idea.
Yeah, you will have no idea what stroke recovery means because at 28 you probably never met anyone who had a stroke. And even if you did, if you were like me, I was 37. But even if you did meet someone that had a stroke, you didn’t really understand what it all means for that person, how they ended up being that way or what their challenges were you just think of stroke as something that happens to all the people. That’s what I thought did you have any experience with stroke before your experience?
With like, older people I know and and I think a relative that have had a stroke, but I didn’t really get to experience it or understand it up close. And it wasn’t until I had my stroke that I really started to dig into how many people it affects worldwide, and what are some of the symptoms, the signs and the deficits that people live with? Or the disabilities like after having had a stroke. So it was definitely like it was an ground for me.
Yeah. I know that in Australia and perhaps worldwide that was speaking about one in six people will experience a stroke in their lifetime. And now I’m seeing the literature has changed and they’re talking about one in four people. That is a massive amount of people that’s 25% of the world’s population is going to experience a stroke in their lifetime.
And it’s alarming that there’s not enough known about it, it’s such an unknown thing. And there’s such a stigma around stroke. It’s really bizarre. That’s what kind of motivated me to get these podcasts out. What were you doing other than being in a committed relationship and just being a regular you going to the gym, all that kind of stuff. Were you working? were you doing all that type of thing were you did you have just your regular daily tasks that you needed to do every day?
I was I was working. I had a nine to five. And I think I was I also had a second job I was like delivering pizzas. So on the evenings and weekends. And like, I think I was kind of burning the candle at both ends, so to speak, just not resting enough, having these long, long days I work, I get to work early, some days sleep late and then go into a second shift.
And I don’t know, I just wasn’t prioritizing time for checking in with myself and really taking care of what was going on. So I was leading like the normal life nine to five working, but maybe didn’t have as much of a priority on my overall health as I could have. My Fitness was definitely a priority. But you know, at 28 you just go in and you don’t always stop to think about what could go wrong or how you can try and minimize certain risks.
How many hours were you spending at the gym
At least an hour a day for the most part five or six days a week, and then sometimes a little more than an hour on saturdays it’d be like an extended day of training for me. So I would say, at least nine or 10 hours a week.
Well, were you preparing for any particular event? Or is it just something that you love doing?
Towards like, when we do like an event, or a trial run or some kind of a competition and fitness sort of competition, I might spend a little more time at the gym. I guess around the time of my stroke it was not too far removed from that last competition.
And at that point, I got just so set in being at that level of fitness. I was spending time in the gym to maintain that. Maybe that sense of identity like that was part of who I was, is to be a certain strong certain level of strong and fit and fast and that was something that I was really attached to.
Yeah, well, man. So how about identity shift after that like, what did you wake up with? You got you woke up they treated you with a TPA. On some sort of a path of understanding what happened and what comes next.
So, how did you wake up? What did you notice that was different in your body?
The TPA kicked in the first six hours. And like, initially, my left side was just non functional. But my left arm I could start to lift, and it took days even get my toes move on my left leg, but it was just extreme weakness. On my left side, left my left hand. My speech was affected. It was super delayed, like I could talk, but I would hear people say words, and when I would go to reply, it felt like I just wanted to get the words out, but they weren’t there.
Everything was just so delayed. And there are some, some dark times, like when you go to rehab, and you can’t physically work out anymore, you’re completely exhausted, but you have so much time to think and to try and examine the experience and ask yourself what if I don’t get better? Like how do I feel about myself if this new of these deficits are part of my life permanently.
So it’s, it’s really taught me a lot about being empathetic to other people’s struggles and recognizing like, people are going through some very, very difficult things. And our minds can make them more bearable or just much more difficult to try and pull ourselves through.
If you’ve had a stroke, and they’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things.
But obviously because you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com, where you can download a guide that will help you.
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.
Your mindset is a really important thing. And if you’re not somebody who’s used to having a positive mindset, it’s probably easy to go into those darker spaces. Even if you do have a good mindset, and you always have had, like it’s possible to go to a darker space because you’re in uncharted territory.
And, you know, you have to contemplate things really quickly about what the future is like. And I don’t know about you But I started to wonder about being able to provide for my family being around for my children being alive next week.
You know, all those sorts of things. You wake up with issues on the left side not being able to speak the things that are experienced early on as well. How did those things start to resolve themselves? When you’re in rehab? What did you need to go through to get that stuff sorted?
I think the speech pathologist that was there, I spent the least amount of my time with her because things started to come back together. Soon as for my speech, after that, it was like the occupational therapy and physical therapy, just trying to navigate they had like a mock kitchen setup, just trying to get me comfortable, what would be like a living a living space, and just trying to show me how I could navigate at the time being in that wheelchair.
And that meant having a really tough conversation with my charge nurse about my goals for rehab. And what assist tools I would be using and how that could impact my life after that, of course, there were those questions like, what will this do in my relationship?
Who am I now like I, I was starting to get the idea that I was going to work as hard as I could intelligently safely and always listen into my therapist. I was going to work as hard as I could to get my sense of independence back.
But I just didn’t know what kind of challenges I was going to put in my relationship. Like, my fiancee, and I were super close, but I had never experienced anything like it. And so I wondered, What must she be thinking? I knew my family must be a little bit afraid and concerned.
A lot of things go through your mind. During those times. I just tried to focus on the things that I could change and the things I could affect. And really put a lot of effort into those and really focused on the core of who I was and not just when I couldn’t anymore.
Yeah, it’s awesome that you decided that what you’re going to do is focus on the things that you can impact and the things you can fix. Because that’s all we can do in stroke. If you can’t walk, or move or talk yet, but you have your, you have your ability to think still in that that’s still there, you can definitely put yourself into a space of what can I do.
And if you can’t move your one one side of your body, but you can practice a mindful meditation to stop you thinking those dark thoughts, that is a massive thing that you can do to take responsibility for your mental well being.
And that might not be something that you can do all the time, but it’s something that you can do when you’re feeling up to it that will put some resources back into your court about how am I going to get through the next day. And we can all do something to support us. When we’re recovering from stroke.
We can all take responsibility for something because let’s face it, doctors aren’t there to do those things for you, you’re responsible for those, no matter how bad your circumstances are, you’ve got to take that responsibility. I know the doctors are there to patch you up and get you out of there really.
And they do a great job and we live in the best times on the planet for you know, a Western society we get to the you know, we get to experience technology, in stroke care, like there’s never ever been and the chances of recovery are never ever been better.
But we can’t rely on the doctors and all those other lovely people that help us in hospital to help us when we leave the house. When we get when we get home and we’ll leave the hospital what other things did you take responsibility for?
My place in my unit and my community and recognize that stroke was something that affects communities because the people that are around you don’t always just like I hadn’t really had a lot of experience. stroke, neither have they and so they didn’t know how to help me with things that were invisible, or how I was feeling emotionally.
And there were times where I got to sit and talk with them. And that was really, really encouraging. And they didn’t treat me like a victim, they treated me like there was some work that I had to do to get back to how I wanted to feel and who I wanted to be.
And that meant some days they could come in and we wouldn’t talk at all, like we could just sit and be still and be quiet. And that that helped. Because I didn’t always know how to talk about what I was feeling at the time and how displaced you can you can feel enduring a stroke.
So that that was a big thing that taught me about just how much love it takes to be a caretaker for someone during a stroke because you have to work with someone and try your best to be patient when a person could be healing emotionally, and struggling themselves to let you know how to help to tell you how they feel.
So that reminded me of being grateful being really, really grateful for my community and for my family, for my friends, for my caretakers, with the nurses at the rehab facility at the hospital, and just being grateful that I had survived trying to remind myself that this could have gone very, very differently like it has for thousands and thousands of people.
Yeah, absolutely. That thing that you said about your emotions, would you consider yourself somebody that was emotionally intelligent, before stroke? Did you have any idea? Because if I think back when I was 28, I had no idea that there was even a thing called emotions. You know? I was such a thick head, you know, I was so blokey. I was so everything will be right. You know, it doesn’t matter. I don’t really yeah, they’re just feelings that don’t mean anything. What were you like, before that?
I think that I like to say that I was pretty emotionaly intelligent, I thought introspection was an important thing to be able to look in at what I was really feeling and how much of what I was thinking about the world was real. And how much of it was me projecting something onto what was going on.
And so that was something I never wanted to do was to project my fear onto my already really awful situation, and just make it worse. So I took time when I could be still to think I don’t really meditate, but there were times I spend time in prayer and just to be alone with my thoughts and the questions that I had.
And that was really, really challenging, but I think that it helped me to try and be introspective to look in to think about how I felt and try and be responsible for those feelings. It was hard to do a lot of times in the questions that I had about myself and if I was going to be okay, if I didn’t continue to make progress.
You’re going to be okay with the fact that you may also end up not making any more progress than what you had. It’s a really hard question to ask. But I imagine that at some point, you have to become okay with that. I’m not saying that it’s easy for everybody to do and that it will happen for everybody. But being not okay with something is I see it as potentially being something that’s going to be more harmful to you emotionally long term, then try to come to terms with something and trying to accept something.
Acceptance after having a stroke
Acceptance is such a big thing in stroke. But I talk about, I talk from my experience of somebody who appears as though I’ve not had a stroke compared to the other people who are sitting in a wheelchair, or pushing themselves around with other aids. So maybe acceptance is one of those buzzwords that you and I can use.
But maybe it’s still part of what we also went through, even though it wasn’t. The outcome doesn’t appear to be as terrible as it has been for other people. I know I talked about that because I had to accept how I feel every day when I wake up every morning, when I wake up, I have to check them, my foot is on the ground and make sure that it sends some feedback to my brain before I get out of bed, because otherwise I’ll fall over.
You know, this thing that’s happened to me, it hasn’t killed me. It makes me look okay, but I wake up with it every day. And it made me think about the people who are in a wheelchair who do need help getting around to and independence.
And when I used to look at them before, and I’ve mentioned this on a few other podcasts when I used to look at them before people who were in a wheelchair and stroke is the leading cause of disability. I’m pretty sure around the world. I was like, well, that person, the only thing that they can’t do according to you know, my naive mind was stand up and walk.
They must be experiencing, you know, I didn’t consider they’re experiencing emotional challenges for not being able to walk, or work or get around. I didn’t think that they would have potential problems, you know, with their bowel and their gut I didn’t think that there might have problems with all those other things that people have problems with when they are in a wheelchair.
I just thought, I can’t walk you I was so unaware of all those things. So for me, I think stroke has given me an awareness as well, like you were saying, and I think that’s a good thing that’s come of it like compassion.
Right? That word you use perspective, I think about that. At times we’re like, something will be going on at work and things get a little bit hectic. And the morning is a little bit rough. And there are periods in our life where I might have just been like all today is awful. But it was really just like a really crummy morning but the rest of my day is just normal, that I don’t like I’m trying to be better about not being swept up in the trivial things.
And so I do have a little bit more of that perspective. Like I do appreciate that people go through hard things, very, very hard things, and there are emotional burdens to them. And when I think about the hard things that we go through with really heavy emotional burdens, or emotional consequences, social consequences.
Like if you go through a stroke, and you can no longer drive or you can’t get yourself to work, you lose a bit of a sense of independence. And so that’s a very real consequence. And to me, those things need emotional resources and social resources like these consequences. They gotta have resources to back them up, and to help folks get back to, like, a sense of self and a sense of worthiness.
Like, it’s challenged on relationships professionally, romantically, like just social relationships. And so you kind of want to feel like, you know, I can still be a part of these relationships like I’m still me and I think part of accepting is accepting the good things too like there are people in my life who still had very kind words to say to me when I wasn’t able to do the things that I thought made me who I was like.
Importance of community in stroke recovery
Like I didn’t feel strong, but they still cared. And I couldn’t make it into work. But my boss at the time, Had still made an effort to reach out to me, this, this matters to me, and it reminds me that community is a big part of recovery.
Yeah, absolutely. When I got out of hospital, I realized immediately that my community wasn’t near me initially, of course, it was people did gather around me and support me and all that kind of stuff. But then the community was out there so I had to get to them. And for me to get to them, I had to make time. And I had a lot of time so I could get there whenever I wanted.
But then I had to feel well enough to get that. I had to have a good a good energy day. I had to have no doctor’s appointment. I had to make sure that people were around when it was convenient for me to be there because I couldn’t get there after work for them or in the evening, because I’d be completely drained by that time of the day.
So one of the other things that I was grateful for is the times that we live in. I can connect with you from Melbourne, Australia, Virginia in the United States. And we can create a community from distance now, which we weren’t able to create before. And I’m. And I’m also grateful for the fact that I had somebody asked me if I knew any stroke survivors in New York.
And it was kind of like, why would you be asking me that you live in New York, I imagined that you might know some stroke survivors in New York. And believe it or not, that person experienced stroke. They’re a little bit isolated. It’s a little bit difficult for them to get around.
But because of this podcast, and because of the way that I’ve put myself out there to meet other survivors to share stories, believe it or not, I’ve interviewed at least three people on the podcast who are from New York City.
Someone reached out to them and said guys, would you connect with this other person who’s in New York City who is also had a stroke looking to meet stroke survivors they of course said yes, we’d be repped to meet her so, Isn’t it amazing that community, which we thought of before is just being around us that you know was down the road or in our village etc has expanded to such a massive scale.
And they can be anywhere in the world and we can get in touch with them at a moment’s notice, like you and I see each other apart from feel and touch each other we can, you know, interact with each other as if we were in the same room.
Sure, yeah. And that’s just one of the things I’m like, when I left, there’s an entire ball of wax open up about going from an inpatient facility where everyone is kind of going through something and going back out into the broader community like a lot of times people don’t talk about the things that they struggle with.
In rehab that was super easy to talk about. Like the ice breaker is so are you in a wheelchair or what’s going on, you know, like there is a little bit of anxiety, leaving that space. So it’s his own ball of wax. And so I knew I had to seek out folks, the easiest way I could.
And that’s online. Like there are people all around the world like yourself who are doing great things for the community, putting people in touch with one another and allowing us to share our stories.
I think it’s important, I shared my story. in public, I went and spoke immediately. Not immediately, about a year later, I joined a program in Australia where we went and spoke them to raise awareness about stroke. And that was great for the stroke foundation in Australia.
And that led to me getting excited about sharing the stories, you know, on podcast, online, all that kind of thing. And that was amazing. It really helps me heal some part of myself as well as hopefully supporting those other people in their healing journey when they get to express and share their stories.
Emotional struggle after stroke
And helped me with my emotions. It helped me get better at managing my emotions, not that I needed to manage them from occurring and needed to be comfortable with why I was having emotional mood swings and cry at a moment’s notice. Did you find yourself dealing with emotional mood swings and crying?
I did like it was weird for me to be so irritable at small things. Like I could look at it and objectively know that it wasn’t very consequential, but at the same time, like I would just be So, so irritated by things that were pretty trivial.
And it didn’t understand. I mean, I started to suspect like, having a brain injury affects those things. And it’s just like you said, being aware of those emotions, trying to stay and like trying to try to stay in charge of my emotions.
And if I can not let it spill over too much on the people around me because I know they’re they’re doing their best and I don’t want it to impact them negatively. I want them to know that I care them being around. And that’s a very real challenge too.
Yeah, crying was a big issue for me. Not that I mind crying is a big issue how it made other people feel around me when I was crying. And it was then, okay, I’m going to have a cry, but also, it’s okay. I’m just crying. It’s alright for me to cry. Don’t worry. There’s nothing wrong. I’m not thinking about anything terrible. Just for some reason I needed to have a cry. And please be okay with me crying in front of you.
Yeah, and that’s, that’s another important thing in the community is having people that are just okay with you being as expressive as you are. And if you need to cry because you’re sad, or because you’re happy you see something touching this could be like just a small thing that you wouldn’t think we kind of sweep you up emotionally, but then it does.
I’ve had moments where my music We’ll do something incredible in school and my nephew will tell me about some accomplishment and I just kind of you get that feeling you kind of get welled up with that emotion and I’m like, I don’t remember being this way in my 20s. Like, this is different.
But it’s a good different Isn’t it? Isn’t that amazing to really connect with them and be emotional about something amazing that I’ve done? It’s important, we might have missed out on those beautiful moments, you know, so the fact that we can experience those moments, you know, I think it’s such a great thing and, and if people are finding it difficult, especially, I know, from my perspective, men, you know, find it difficult to cry and share their emotions like to be okay with it, it doesn’t really matter.
Absolutely true. And it comes with it. Like, it comes with life in general. And that’s the other thing is like when you are going, you’re in recovering from a stroke, like you still have to go and deal with the rest of your life. Like the day of my stroke, that was my only focus. And for a few months after that, like it was very, very, my focus was super narrow.
But after that, like once I returned to work, I had to think about showing up to work on time and doing my job and managing my responsibilities. So it wasn’t just stroke recovery for life is like life multiplied by stroke recovery.
Yeah. It’s a
It’s a challenging thing. Very, very challenging.
How was the reintegration back into work? Did you find yourself needing to take it easy and, find gentle ways of getting back into your tasks or were you all in it from the very beginning of going back?
I did, I kind of had like, an on ramp back to a full workload. I wasn’t working full days even because I just like I do a lot of computer work. And so I couldn’t stare at a computer screen for eight hours every day. So I would just work like a half day and in the beginning I was just so exhausted, like I would like at this point I had learned to drive.
So that was awesome. I was excited about that. I would get to work, work four hours. And even within that four hours, I might take some, like a 15 minute break here, there. And before I would go home, there were times where I would like have to take a nap in my car, because I just didn’t want to, like driving is is also very taxing.
And I didn’t realize that until I was really learning how to drive and thinking about all the little bits of information that you’re taking in when you’re behind the wheel. So in the beginning there was that on ramp, not going full workload yet. But working those modified schedules until I was ready to start taking on a full day.
How long did it take you to get back to work?
I went back to work in three months. So I don’t think without that the accommodations in place that I would have been able to do that because I know for sure that I couldn’t sit for eight hours because the headaches would have just been outrageous.
So in about three months. Not quite for, I was able to get back into the office and start to work again. And they were really accommodating with allowing my schedule to work with what I could deal with at the time. And then I guess, closing out the year and then going into 2017, I started working on a full course with a full workload, getting back to a not an eight hour day from there.
And how is that? How have you noticed that it’s getting better and better for you, as time has passed from those early days of getting back to work? And now where are you at now?
I can work a full load a full day, no problem. For the most part, there are periods where we have like training events, or there’s some new skill that I need to pick up at work and I can feel my brain trying way harder, pushing a little bit more and eating up more resources, just trying to take in new info, take good notes at the same time or listen to a webinar and then take notes.
I can feel certain things, certain tasks require more. And they got to press the gas a little more to get things done. But I can work like it was a routine day. I’m going to go for eight hours now. So that’s cool.
Yeah, it’s that learning the new things that you haven’t done before that you’re trying to connect to a task that needs to be done. This how I found that I found it really difficult to do new things, like I said, to retain stuff work, but then adding a little bit of complication to that routine.
And you know, how you said you can feel your brain doing things, brains not supposed to be able to feel stuff because there’s no sensory neurons in there. But it does feel like that something feels like it’s going on physically in there.
I don’t know if it’s creating new neuronal connections or I don’t know what’s happening, but there is definitely a kinesthetic portion of retraining your brain to learn and to be able to cope with new things.
Right. It’s like it was your kid and you go into your bedroom and you’re looking for your, your favorite toy or this new toy that you bought, and you have to dig through your play things or whatever you can feel yourself rummaging around, like looking for the resources to get it done.
You’re like, Where am I going to pull this from? How I got to commit this to memory. What am I going to think about to make sure that I retain this new item? And like you said, there’s like a kinesthetic portion. You just you’re aware of it in a very strange way.
Yeah. So you’re three years out now? Are you back to physical exercise the gym?
I am Yes. So getting back to the gym med doing a lot of my outpatient exercises, once I was discharged from outpatient rehab, doing those on my own, and really taking that into account and I’ve gotten back to a higher level of activity, but not to the same intensity. Like I still train with pretty regular frequency, but I don’t train quite as hard for quite as long but I really do.
I like getting in moving around and just feeling what I can do. So, being in the gym is a good thing for me physically for my fitness, but also like socially to be around people that I care about and to just kind of let it out sometimes you just go in, just get it done.
And what about your fatigue levels? When you’re in the gym? Do you notice that your energy levels drop off quickly? Or have you been able to get back to a really good level of energy?
Um, I think maybe like, like my cardio. My endurance isn’t super great right now and, but as far as like my energy levels, I sometimes have to space my workouts out so that I’m not as fatigued like I can’t, I don’t train back to back days very often anymore. So I do sometimes feel that my energy is kind of tapering off or that my focus for whatever I’m doing. There’s like a lot of complexity to it.
If it’s some kind of a compound movement. Then, like if I’ve done a few different sets of this exercise, I can feel myself, my focus will drift. Okay, it’s tough for me to stay engaged on that activity. So that’s definitely something that’s that I have to be aware of in the gym is like not pushing it too far was my focus starts to drift.
So you’re back at work, you’re back at the gym, you’re back driving, things are on track. Now everything seems to be getting better, which is awesome. What deficits are you left with? Is there anything that you feel or is visible with you on a daily basis that you’re still got?
Physical and mental deficits caused by stroke
Nothing that I think most folks would see. I think my physical therapist would probably note that. At the end of the day, if I’m exhausted, my gait changes, like my stride is a little bit different. And maybe my left foot, try to drift a little bit. It doesn’t all the way it just doesn’t engage the same way that it did in the morning.
And also, like I’m not as comfortable with my nighttime driving as i was before and I love driving, for, like, if it’s a long trip and my fiance and I are taking a trip, we might switch a little sooner, like I just don’t. I think maybe there is a little more anxiety around it. Because I’m also taking it all the information on it was in the daytime, but these lights like strafing by your eyes over and over, it feels like so much more input.
So you tend to just give yourself enough space to rest and to just not be behind the wheel so that you’re not being impacted so much by all of that information you have to take in. Plus it’s the end of the day, so you’re probably getting low on energy anyway. And focus is starting to drift. So may as well not be there. give it over.
If I can help it. Yeah, I definitely keep it to a minimum whenever I can. But I think the other differences that I might have are on a bit forgetful at time. So I do try to have memory tools I have reminders and alarms and calendar like invite things set up.
So that’s helped a lot is to try and just manage that a little bit better. And there are times where there are people who, whose names I know for sure. I’ve just known them for years. And it just like just (inaudble). Looking at someone who’s like, this is Joe, Is this John? Like, but it’s just not there.
Yeah, I know, people who haven’t had a stroke will say to me when I do that, well, that’s what we all do. We all do. We all forget people’s names, like type of thing. I know, I used to do that already. But there’s a different level of it. Now. It’s kind of a different version of forgetting. And it’s not forgetting it’s that it’s just not there. The information is not there.
Right. It’s like, sometimes if you’re just like, you have a normal conversation, there’s a word that’s on the tip of your tongue. No, there is none of that. Like it’s just not there at all. Like, I can tell them I’m getting exhausted to towards the tail end of a week.
If I am packing my things up in the morning, and I managed to forget my lunch at home. I got pack my lunch to work. I managed to forget my lunch at home two or three days in a row. Okay? I must be getting a little bit of a tired. So just like planning things is I really have to double check things when I plan them.
So yeah, in Episode 77, I interviewed a neuro psychologist and another lady who had done some work in the psychology area, Kimberley Meates and Vanessa Bowie. And we spoke about the different types of memory. So if that’s something that people are interested in, they can jump on and have a listen to that episode as well.
Or download a PDF of the transcript they can have a listen, just to get a bit of an idea of what different types of memory there are, believe it there’s about three or four different versions of memory and we access them in different ways.
And some of those things memory tricks are related to creating a kinesthetic portion to remembering something or creating a story in your mind about what something means, or why you’re at a particular place and why certain persons there.
And sometimes you can go backwards from that place to create that memory. So for example, if you’re in a place and you’ve met somebody, and you forgotten the name, but you hundred percent know who they are, you can just go, okay, when was the last time I was with this person who was I with as well as this person, and you can create a story around whereas this person appeared in your life who they were with.
And usually, those little things that you remember about the other situation will bring into your mind, why this other person’s what this other person’s name was, for example, to help you just get back to that name to create another path to remembering who they were. So it’s a really fascinating place remembering things after stroke. I remember I used to have three or four appointments a week at one point in rehab.
And I think that’s so cool to do people have just had a stroke, try and make them remember, three or four appointments at three or four different places all the time and which one you had to be at? and at what time? Man, it was such a task. And I would forget regularly, I would get the phone call, probably half an hour into my appointment time when I wasn’t even there even thinking about going there.
And they would send me a you on your way. And I’d be like, No, I didn’t know we had an appointment. We sent you out a reminder, we sent you out a text, message, all that stuff. Yeah, let me check my calendar. I even wrote it in my calendar.
I haven’t got those reminders but those reminders weren’t enough to make me question that thing that I needed to do and to trigger my mind to say that reminder means that you have to be at a certain place. Just a reminder about something that I couldn’t join the dots to get to anyway, like, I always missing that last portion of the task, which was to actually physically understand that that meant I had to get there.
Right? Yeah, so I’m definitely took that episode, I do listen to podcast like on the way to work or on the way home at times. So that’s something that I’m definitely interested in because being able to commit something to memory, I need as many tools as I can get.
Yeah, that’s a fun interview. The girls were amazing in explaining my questions. And I asked those really difficult tough questions that, you know, stroke survivors need to know about memory, you know, things that are really weird and different that don’t think about that.
I didn’t need to know any of those things before I had a stroke, but I really needed to know them now. So it was really good. So I want to talk about moving forward now. What’s the plan here on your three years out? Is there a plan? Are you just taking it day by day tell me about what’s going to happen in the future?
Plans for the future
I definitely want to do more sharing my story, because I want to connect with people who feel like their story is not mirrored somewhere around them. Because when I did before I had a stroke. I didn’t know there were young folks who had a stroke at the rate that they do. And so I want to be a part of the community that’s speaking about their experiences and letting them see that you can regain some sense of normalcy, and you can feel worthy of the good things in your life, even even though you had a stroke.
Like it doesn’t have to. It just doesn’t have to steal your life away, you know. So I definitely want to be sharing more about my story online and in print, and want to get around to speaking in person and getting out and talking to survivors. And making that connection in person. And I’d love to see where that takes me. Just go out to the community and just Being being both a survivor, but also an ambassador and an advocate for this community.
As somebody who’s nearly eight years into that part of my process and my goal, and that is an amazing place, it’s going to take the feedback that I get, and just the warmth and the love and the generosity that I get from people who I meet from all over the world.
And then you know what I said earlier, being able to make connections for people, it’s so rewarding, that I can from 30,000 miles away make a connection for somebody in New York City. It’s just such an amazing thing. And I really encourage you to absolutely live that dream of yours and to make that happen because you’ll get so much out of it.
And it’s great that you’re going to get something out of it because that’ll make you want to do more. And you don’t know it, but it is impacting way more people than you can possibly imagine. And I know that some people contact me and say that that’s amazing for the one person that does, there’s probably 50 or 100, you know, that are getting the same out of my podcast episodes than that, as well as that one person who contacted me, but they’re just not contacting me.
And they didn’t have to. But that’s what they’re getting. I feel like they they’ll be getting that kind of need met as well. And when I do get one person contact me and saying thank you for the episode, that makes me want to do it even more, and I can’t stop doing it.
I can’t just now stop and stop offering this service, or this. This, what is it this community of mine to the world, it’s just what I was meant to be doing. And I had to get to this point. In this really strange way, by having a stroke and suffering for two or three years and having brain surgery, and struggling and doing all those things. It’s kind of I’ve said it before, and I know a lot of people can’t say this, but it’s kind of one of the best things that happened to me. Looking back after eight years.
Right, I’ve thought about that a lot. And I was thinking about this today is what about the experience what I want to keep? What don’t I want to lose about having had a stroke, and I think it’s this community. And I think it’s the reminder that there are others who suffer through things and they persevere. And then they become examples of others as to how they can continue to live with richness and their life. So I want to show some of that to the other survivors who may not feel it right now.
Yeah, what would be your advice to somebody who’s just come out of hospital or rehab, they’re three or four months in and they’ve got the some of the concerns that you have, what would you be advising them right now to just do.
A support group, like if there are support groups offered either by your healthcare providers or rehab facility near you, or just a support group that’s been put on by survivor in your community then go and connect with those people, like that’s kind of remind you that even as isolating as it feels, it isn’t just happening to you.
There’s a way forward, there are people that understand. And having someone there that gets it is enormous. Like the physical things day to day, you’re going to figure out a way to manage those, but the ones that are invisible, the emotional burdens, and the challenges that make everything else seem so much harder.
Those I think you’re gonna need to heal from. with others around you. It’s going to be tough to do that in isolation. So I would say seek out that community, get to be a part of a support group. Reach out to fill in the recovery after stroke podcast and share your story.
Yeah, brilliant, man. Now, one more question before we go. Have you set a date yet?
The date for our wedding is May 30th 2020 and I’m super excited about it. And I’m super grateful that I get to marry my best friend and that’s a cliche thing to say, but she’s been amazing. And if you watch this episode I just wanna say Blaze. I love you very much.
That’s brilliant. Well done. It’s definitely our partners are definitely make it so much better and so much easier to navigate this stroke recovery journey and they owed so much gratitude for hanging around and putting up with us and taking the role of carer and being responsible for us with no training, right?
Yeah, So like she went through this with me. And we’re both 20 somethings just trying to figure out what just happened. And just having somebody by your side that’s going to be a rocket is super tough because I know she looked at me and she still had so much love but it’s incredibly scary to potentially lose someone that you care for. While they’re still here, you know, they lose so many of the things that they really enjoy, and it can be very, very hard on relationships.
I know that some people do have relationship breakups after stroke. I know. Specifically in one of the episodes, early episodes, we spoke about it with my friend, Antonio, Iannella. And Antonio’s relationship ended after he had a stroke. But it was kind of a blessing in disguise. He says, in that, of course, it was difficult to deal with a marriage breakup, after the stroke as well as dealing with a stroke.
But it kind of sounded like and it felt like that. The fact that they weren’t together in that time was benefit Antonio so that he can do the healing and the recovery without having the complication of a difficult relationship. And of course, it was tough. It was tough, financially tough, all of those things, and he, you know, didn’t get to spend so much time with his children and All those things were all tough.
But then he also reflected on the fact that having the time away from his children because they had shared custody, and they’re able to be half the week with dad and half the week with mom, and they were nearby meant that, that half the week when Antonio was on his own, so to speak, he was able to really recharge his batteries and feel better so that when he got to be with his children, he was able to have a lot of time with them because they were young, and they needed that around and they needed to be energetic and all those things.
So he was able to see the positive side of that marriage breakup, although it was difficult, and him and his former wife on really good terms now, even though it was difficult, he did get a lot of benefits out of not being in that tough, challenging part of the relationship. Imagine being in a dealing with a tough relationship as well as trying to recover from stroke would be so tough on people.
So um, so sometimes things that happened that appear bad at the time, by end up being a blessing you just haven’t realized that yet or enough time has lapsed. For you to learn the lesson that you needed to learn.
That’s absolutely the truth. And there are so many times where I look at the struggle and I say to myself, there is something good on the other side of it, and for everything that I had to pay for all of the suffering and the strife, like I’m absolutely going to get every good thing that this has to give me.
That’s a great way to end the podcast. Vince, thank you so much for being on the podcast.
Appreciate that so much. Thank you.
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