Comprehensive Guide for Young Person Stroke Survivors
Strokes can be devastating at any age, but they are particularly impactful when they strike the young. This post delves into the unique challenges faced by young person stroke survivors, offering essential information and support strategies to help them navigate their recovery and life beyond.
What Causes Strokes in Young People?
While strokes are often associated with older adults, they can occur in younger individuals due to various factors. Key causes include:
1. Genetic Factors
Some young people are genetically predisposed to conditions that increase stroke risk, such as blood clotting disorders or certain heart diseases.
2. Lifestyle Factors
Lifestyle choices, including smoking, excessive alcohol consumption, poor diet, and lack of exercise, can contribute to stroke risk even in young individuals.
3. Medical Conditions
Certain medical conditions, such as high blood pressure, diabetes, and autoimmune diseases, can elevate the risk of stroke in younger populations.
4. Trauma and Injury
Head injuries or trauma can lead to strokes, especially if they cause damage to blood vessels in the brain.
Recognizing the Signs of Stroke in Young People
Prompt recognition of stroke symptoms is crucial for effective treatment. Key signs to watch for include:
- Sudden numbness or weakness in the face, arm, or leg, especially on one side of the body.
- Confusion, trouble speaking, or understanding speech.
- Difficulty seeing in one or both eyes.
- Trouble walking, dizziness, or loss of balance and coordination.
- Severe headache with no known cause.
Recovery and Rehabilitation for Young Person Stroke Survivors
Recovery from a stroke can be a long and challenging journey, especially for young person stroke survivors who may face unique challenges.
1. Physical Therapy
Physical therapy is often essential to regain strength, coordination, and mobility. Tailored exercises help rebuild muscle function and improve overall physical health.
2. Occupational Therapy
Occupational therapy assists survivors in relearning daily activities and adapting to new physical limitations, focusing on improving quality of life.
3. Speech Therapy
For those experiencing speech and language difficulties, speech therapy can be crucial in regaining communication skills.
4. Psychological Support
Emotional and psychological support is vital. Many young stroke survivors experience anxiety, depression, or frustration as they adapt to post-stroke life. Counseling and support groups can provide significant help.
Long-Term Support and Lifestyle Adjustments
Adapting to life after a stroke involves ongoing support and lifestyle changes to minimize the risk of recurrence and improve overall well-being.
1. Healthy Diet and Regular Exercise
A balanced diet and regular physical activity are critical in maintaining cardiovascular health and preventing further strokes.
2. Medication Management
Adhering to prescribed medications and regular medical check-ups can help manage underlying conditions that may have contributed to the stroke.
3. Community and Peer Support
Engaging with community resources and connecting with other young stroke survivors can provide valuable emotional support and practical advice.
4. Education and Awareness
Raising awareness about stroke prevention and the unique challenges faced by young person stroke survivors can help reduce stigma and promote better support systems.
Conclusion
Young person stroke survivors face a unique set of challenges, but with the right support and resources, they can lead fulfilling lives. By understanding the causes, recognizing the symptoms, and accessing comprehensive recovery and support strategies, young person stroke survivors can navigate their journey towards recovery and a healthier future.
FAQs
- Can stress cause a stroke in young people? While stress alone is not a direct cause, chronic stress can contribute to risk factors such as high blood pressure and unhealthy lifestyle choices that may increase the risk of stroke.
- Are young women at higher risk of stroke? Certain conditions like pregnancy, childbirth, and hormonal changes can increase stroke risk in young women, especially if they have other risk factors.
- How long does it take to recover from a stroke? Recovery time varies significantly based on the stroke’s severity and the individual’s overall health, ranging from a few months to several years.
- Can strokes be prevented in young people? Adopting a healthy lifestyle, managing chronic conditions, and avoiding smoking and excessive alcohol can significantly reduce the risk of stroke.
- What support is available for young person stroke survivors? Support ranges from medical and therapeutic services to community groups and online resources specifically designed for young person stroke survivors.
Young Person Stroke Survivor Interview With Kenya Robinson
Listen to Kenya Robinson’s inspiring journey as a young stroke survivor. Discover her recovery, lifestyle changes, and valuable tips!
Highlights:
00:00 Introduction
01:00 The Beginning Of A Young Person Stroke Survivor Journey
07:43 Denial Of Stroke
16:37 Hemorrhagic Stroke And Deficits
18:15 Pros And Cons Of Caffeine
31:47 Getting Back To Jazzercise
40:30 Living With Altered Senses
50:23 Developing Body Awareness
1:03:36 Running After The Stroke
1:15:29 The Hardest Thing About Stroke
1:19:25 The Lessons From The Stroke
1:20:43 Grace After A Stroke
Transcript:
Introduction – Young Person Stroke Survivor Kenya Robinson
Kenya Robinson 0:00
Welcome to Episode 315 of the recovery after stroke podcast today we have an incredible story of courage and recovery as we chat with Kenya Robinson. While teaching a Jazzercise class Kenya experienced a hemorrhagic stroke, an event that turned her life upside down.
Bill Gasiamis 0:19
Join us as Kenya shares her journey of regaining strength and balance, overcoming denial and stress, and finding new ways to embrace life after stroke. From managing spasticity and the benefits of aerial yoga to navigating the challenges of family life, Kenya’s story is a powerful reminder of resilience and determination. Let’s dive into Kenya’s inspiring recovery journey and learn how she continues to thrive and support others on the path to stroke recovery. Kenya Robinson. Welcome to the podcast.
Kenya Robinson 0:52
Thank you for having me. I appreciate this.
Bill Gasiamis 0:57
Absolutely my pleasure. Tell me a little bit about what happened to you.
The Beginning Of A Young Person Stroke Survivor Journey
Kenya Robinson 1:00
Oh, wow. Okay. So almost five years ago, I had a hemorrhagic stroke. I was teaching, I own a dance fitness facility and was teaching class and just kind of felt the effects of a stroke as it happened. I remember walking on stage, getting ready to teach class. And went to start the music, and my right hand couldn’t press play. And I thought that’s weird, I hit it with my left and, let’s keep going.
Kenya Robinson 1:42
I started to teach class, got through the heavy aerobic period, and was grateful when it ended. Because I felt winded and I knew with the strength portion coming up, I’d be able to kind of take a break, things come down a bit, I was in the middle of an upper torso routine when I lost the weight from my hand and I saw it dropping hit the floor.
Kenya Robinson 2:10
But in my mind, I was like how did that happen? Like, I don’t remember feeling it, it just dropped. Not long after that, balance started to become an issue. And I remember backing up against the wall and bracing myself and telling the class something’s wrong, but I’m okay we’re going to keep going with this routine.
Kenya Robinson 2:32
And they’re looking at me like, Oh, my goodness. And I see one of my members moved to her purse, and I figured she’s calling 911. Well, it’ll be okay, I’m just tired, I just need a little rest. And then when that song ended, I ended class and apologized because I felt bad that I couldn’t do it.
Kenya Robinson 2:57
But there really wasn’t no going on. The members rushed the stage and covered me in prayer. And I remember Andrea coming over to me and she said, I’m on the phone with 911 they want you to smile. I was like, No, we’re not gonna do it. And she was like, why? And I’m like, because that if I can’t smile, that means something’s wrong.
Kenya Robinson 3:22
And I don’t want there to be anything wrong with me. And it went from let me see you smile to stick out your tongue. And I was like, nope, not doing that either. I don’t want anything to be wrong. And that’s my last memory. I don’t remember the paramedics coming in.
Kenya Robinson 3:44
But I do remember getting on the ambulance. I don’t remember going into the hospital. But then there are conscious parts where I wake up and then go back to sleep. I missed an awesome helicopter ride. A little bummed about that to another hospital. Yeah, so that’s my story.
Bill Gasiamis 4:11
You’re an instructor what kind of an instructor?
Kenya Robinson 4:15
Oh, I’ve been an instructor of Jazzercise for 15 years in November.
Bill Gasiamis 4:23
That doesn’t sound like it’s a task, or a job, or a career that somebody who buries the head in the sand. Was this situation an instinctive thing to if I don’t express what’s wrong, then nothing is wrong. Was it like an instinct that’s like a survival thing? Or was it a mindset that came to the fore when all the things happen..
Kenya Robinson 5:01
To be honest, earlier that week, I had just felt like I was under a lot of pressure. Jazzercise is not my only job. It was not my only business at the time, I also had a tech based business, but I was running. And I remember saying, something’s got to change. I need to do things differently. Like, I don’t spend life living life, I spent, like putting out fires, I cannot take things a day at a time because it’s it’s happening as it happens.
Kenya Robinson 5:50
And I just remember the pressure of that. And my then husband at the time, I said, when I need to change something, and he’s like, Well, let’s sit down and talk about it right now. And I’m like, I can’t this week is so full, that I just need to get to Friday. If I can get to Friday, let’s sit down, let’s reorganize some things. Let’s talk about doing some things differently.
Kenya Robinson 6:20
And he said, Okay, that was on Saturday, I had the stroke Monday. So I didn’t make it through the week. But yeah, a lot of pressure, a lot of stress. And as a matter of fact, that was coming. Sorry, I had struck on Tuesday, as I was coming down, on my way to go to class, I was thinking this is the best part of the day, I’ll be able to just get stress out, let it go. And everything will be okay. But I think it was the events leading up to that. That really put me in the bind that I wasn’t expecting.
Bill Gasiamis 7:03
I imagined then part of it not happening, this is not happening to me, there isn’t anything wrong means that you can go back to your work to tech company and continue putting out fires, do all that kind of stuff. Continue doing the Jazzercising stuff.
Bill Gasiamis 7:18
So it’s like I’m too busy to be unwell kind of scenario. You might be surprised if I told you the amount of people who said exactly the same thing that you said, which was something’s got to change and then man, change came like nothing that they’ve ever wished before.
Young Person Stroke Survivor’s Denial
Kenya Robinson 7:43
Totally. I sit back and reflect, to comment on the first part of what you said, total denial, total denial, as it was happening, I’m in denial that it’s happening. And I was in that mode of less push a little more or less push a little more, let’s push a little more. Oh, see, we survived it less push a little more to the point of where my body was like, oh, no, we’re done pushing. And this is as far as we go. And I consider it a miracle that I hear. And I really feel like the stroke definitely changed my life. And definitely changes, especially now how I do things like after stroke, you kind of have no choice.
Bill Gasiamis 8:38
You either stay the same and suffer or change and recover.
Kenya Robinson 8:45
1,000%
Bill Gasiamis 8:47
You’re 49 at the time.
Kenya Robinson 8:50
No I’m 49 now I was 44 at the time.
Bill Gasiamis 8:54
You’re 44 at a time. So I imagine it wasn’t the only two years before the stroke that you’re pushing that hard. You’ve been pushing for a long time. It seems like it was just a way of life.
Kenya Robinson 9:10
Our family situation, I think was an unattainable one. We lived 40 minutes away without traffic from life, like work life, kid’s play life the social activities, it was 40 minutes with no traffic, you put traffic behind that. And then it becomes an hour and 10 minutes. So to get up and go to school, for me I think if you’re living locally, school is 5-10 minutes away.
Kenya Robinson 9:43
Well for my kids, they were up at 5:30, we’re on the road by 6:15 to get to school by 7:30. And back then I was like oh it’s family time. We’ll have this time on the road. We can talk about what’s going on, we’ll make it work. And I think it worked to our detriment because the kids would go to school, I’d go to Job A, which was one company and work until time to pick up the kids from school.
Kenya Robinson 10:17
I crockpot dinners at home, so like, bring them on the road, the kids would come to my office, they do homework, eat dinner, then the boys would go off to basketball practice. My daughter did tutoring, she tutored some students at the time. So she’d go and tutor students, or she’d stay in my office and work.
Kenya Robinson 10:38
And then I go teach the dance class, put everybody going pick up everybody from where they were, and then we’re on the road at eight o’clock at night, going that 40 minutes with no traffic, you get folks ready for bed. Now it’s 10 o’clock. And because I’ve taught a dance fitness class, I’ve got extra energy.
Kenya Robinson 11:02
So I’m like, Okay, we got win number three, let’s go to 2am in the morning, let’s finish some of the work. I didn’t finish from Job A trying to get to Job B. And then at two o’clock, I’m finally like, okay, I can sleep. But that alarm clock goes off at five o’clock the next morning. And it was that continual push every day, which is nuts, insane.
Intro 11:28
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Intro 11:45
Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
Intro 12:08
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 12:28
I’m exhausted just hearing about it. They’re adults now. But there was just no way that I would have been able to get through like a year of that. So to paint the picture for me. First you’re single, then you meet somebody, then you get married. And there’s two people married with our kids. And then somehow down the track, you go from two people married with our kids, lots of time on your hands to do stuff to two people with kids and a shedule. That’s more relentless than the President’s shedule.
Kenya Robinson 13:15
Crazy and that was the weekdays on weekends, my boys played travel ball. So we’d be traveling up wherever whether it was in state out of state game started at eight in the morning. They just don’t play one game. Because if you win you play a second game, and if you win, you play a third game for the championship where you come back tomorrow. So the weekends were filled with sports and then just not attainable not attainable.
Bill Gasiamis 13:44
How old are the kids now?
Kenya Robinson 13:46
My oldest is 22. She just graduated from UCLA. That’s my daughter, my oldest son is getting ready to start his junior year of college and my youngest is about to start his senior year of high school.
Bill Gasiamis 14:05
So there’s a sounds like there’s a bit more space. They’re kind of more independent than they used to be.
Kenya Robinson 14:13
Definitely. And I’m grateful for that because it’s really given me the time to figure out how to manage my own recovering in this process. I did not give up the Jazzercise business I was told after the show, pick one business that you want to keep.
Kenya Robinson 14:32
And I chose to keep Jazzercise because it’s a fitness community of women that that exercise does more for mental health, physical health, total wellbeing. So it was important to me to keep that for the women. But then as I got further along in my recovery, it also became my rehab for getting stronger and improving on my I own. So I will always be thankful to Jazzercise for the program that they provide.
Bill Gasiamis 15:08
I mean, if you can be physically active after stroke, it’s one of the best things you can do to help recover and help heal your brain, even though it’s hard and maybe causes fatigue and causes all sorts of issues, perhaps the benefits definitely outweigh outweigh the negatives because I don’t think there’s any negatives unless you’re doing it in an unsafe way. And that means that you end up putting yourself at risk of falling or anything like that. So, you’re telling me, there’s no men coming to Jazzercise?
Kenya Robinson 15:42
We need men more who Jazzercise and I can tell you in my almost 15 years, there have been about five men who would come in and just dance. And it’s the time of their life like they do their own form of dancing to the movements. And then they really liked the strength part. And for the men who’ve come in and tried to go, wow, they really kicked my butt or wow, I didn’t realize it was so much fun. So I always encourage men to try Jazzercise. And now they’ve got an on demand program. So nobody has to know they can do it in secret if they like. But we’d like them to come out to our studios and try it.
Bill Gasiamis 16:27
It’s much more fun with the people around you with actual interactions and all that type of stuff. So what type of stroke did you experience?
Hemorrhagic Stroke And Deficits
Kenya Robinson 16:37
I had a hemorrhagic stroke. It brain bleed three centimeters on the left side, hemiparesis on the right side, aphasia, and just the weakness throughout, which is tough place to be tough place all the way down from my head to my toes.
Bill Gasiamis 17:07
Drape down the middle of your body.
Kenya Robinson 17:10
Absolutely. Yeah.
Bill Gasiamis 17:12
I know that one. very intimately. But in your little questionnaire that you answered, you also said you’ve had this evidence of ischemic strokes.
Kenya Robinson 17:26
Yes, so the stroke that I had October 1 in 2019, I thought was my first stroke. I found out year two, almost here to that it was actually my third stroke, not my first. The first two were ischemic. But they had they saw effects on my brain that I never knew about. But I did suffer from migraines in the past. And so the doctors said that that could have been during one of those migraines that this skin shrugs happen.
Pros And Cons Of Caffeine
Kenya Robinson 18:15
As the of the my migraines were horrible, like no light, nausea, no, like sound would feel like somebody was kicking my head with the steel toed boots. Awful, awful. I haven’t had migraines, my migraines were attributed to caffeine. So I’ve have a diet that does not have caffeine, and I haven’t had a migraine and maybe seven years.
Bill Gasiamis 18:46
Caffeine is a bit of a there’s so many benefits for people to have caffeine, you hear about it all the time. You know, caffeine is, you know, enhances your mood. It does this it does that but it’s a drug. And it can be used really badly. Especially if you use caffeine when you wake up and don’t allow your body to go through its regular wake up cycle. And And it’s also can be for some people irritating on the gut, and on the esophagus.
Bill Gasiamis 19:15
And it can cause gut issues like that. Caffeine also can keep people up at night if you have caffeine too late, right. And if you’re a stroke survivor, and you have caffeine at the wrong time, and then you can go to bed and sleep then it’s a terrible cycle because in the morning, you’re feeling really crappy. You need caffeine. And what the thing about caffeine that people don’t realize is actually doesn’t do anything for you. What it does is it gets rid of the signal that tells you that you’re tired.
Bill Gasiamis 19:46
This is just a quick break and we’ll be right back with the interview. Now imagine a life where the impossible becomes possible where the challenges of stroke recovery transform into a triumph and growth. This Is My Story and I’ve captured it all in my new book The Unexpected Way That A Stroke Became The Best Thing That Happened. I know firsthand, the emotional roller coaster of stroke recovery, the fear, the uncertainty, the frustration.
Bill Gasiamis 20:15
I’ve been there. And through my journey, I discovered that a stroke, while devastating, could become a catalyst for profound personal growth and positive change. In this book, I share my deeply personal story and that of another nine stroke survivors, offering you a roadmap not only to navigate your recovery, but to thrive in ways you never thought possible.
Bill Gasiamis 20:39
Are you ready to turn your challenges into opportunities to find strength in your struggles, while the unexpected way that a stroke became the best thing that happened is more than a book, it’s your companion on this journey, a source of inspiration and a testament to the power of the human spirit. To get your copy from Amazon today, follow the links in the YouTube description, or visit recoveryafterstroke.com/book to embark on a transformative journey towards a brighter and more empowered future.
Bill Gasiamis 21:12
Because the best chapters of your life are yet to be written. So you’re still tired, but the caffeine interferes with the signal and just pretend makes you feel like you’re not tired. So it’s such a false sense of energy or that I’m okay, you know, your body is screaming and saying, Hey, I’m actually really tired. And what you’re doing is you’re just giving this thing to stop telling you that it’s really tired, and you’re pretending that you’re not.
Bill Gasiamis 21:44
So for all the benefits that suppose that the caffeine has, for some people, the stroke survivors, I recommend that they, especially initially, after the stroke, that they stop drinking caffeine, and that they try and avoid it as much as possible. I’ll have caffeine now.
Bill Gasiamis 22:01
But I try to have it after. And I’m talking about coffee. For me, it’s coffee. So tea is fine. But the issue for me is definitely coffee for some reason. And if I do have a coffee, I’ll kind of try and have it two or three hours after I’ve woken up so that I’m already awake, and my body’s gone through the sleep cycle.
Bill Gasiamis 22:24
And I’m not relying on the caffeine. And that means that I’m a bit slower to get going in the morning, you know, I have to warm up to everything before I can really get going. But it definitely has made a difference in the way that I experienced my brain and the fatigue that used to come with tricking myself into thinking that I was awake when in fact my body was tired in the mornings.
Kenya Robinson 22:55
I can relate 100% I’ve never been a coffee drinker. For me, I like green marcha, which has the antioxidant and the it’s got a little bit of caffeine in the morning. I don’t mess with it any other time? Yeah, because I do not want the migraine life back. No thank you.
Bill Gasiamis 23:19
There enough, I get headaches these days, that are pretty annoying. And they do seem like migraines. Nobody has diagnosed them or anything. But light sensitivity becomes an issue. For that particular time that it’s happening. My neck gets all tight and my muscles on the back of my shoulders or get all tight.
Bill Gasiamis 23:40
Sounds are really difficult to handle some pitches on those days are really harder to to handle. And I’m not I’m not so nice to be around on those days. But it’s kind of made trying to get get through it. And they seem more regular than they used to be. It’s really annoying. There’s two or three days a month where I’m just I have a headache for three or four days. It’s annoying.
Kenya Robinson 24:13
That’s scary.
Bill Gasiamis 24:16
So how easy was it to leave the other business aside? What did you have to do to walk away from it? Was it something that you had to sell? What how did that go?
Kenya Robinson 24:30
I had contractors that were working for me at the time. And the way that business started I was gifted my clients. So I gifted. I paid for it and gifted my clients to the contractors who are working for me at the time and they’ve been able to do some wonderful things. So you know, in this life, sometimes it’s time to say goodbye. We’ll Dubai’s are hard. I liked I provided weapon administrative support.
Kenya Robinson 25:05
I like creating content, digital content. designing websites, like it makes your mind think in a certain way, because there’s certain programming that you go through, you know, and B, then it goes to C and D, which may go to M. And you know, and I was sad to say goodbye to that business. Probably a year, year, end of year one, year two, I decided to take on a freelancing assignment just to kind of see, what is my brain do with it?
Kenya Robinson 25:47
Is it able to handle it? Is it too much pressure? Does brain fog kick in? Does fatigue set in? How do we pace it so that we can walk away from it if we need to come back? I’m grateful for the fact that those qualities, the characteristics, I’m looking for the word, it’s not coming right now. They still exist, but not at the same quickness? Like sometimes it does take walking away from it and coming back.
Kenya Robinson 26:23
To be able to keep pushing not I don’t want to say pushing through, because I don’t like that we’re not pushing through anything. But to figure it out. And um, for figuring out, does it have to happen in that instance? No. Can it happen tomorrow? Yep. Can it happen next week? Sure. Can Can it happen next month? Yep. It doesn’t have to be in the moment like before.
Bill Gasiamis 26:50
That’s a big difference. Huge difference. I can relate to that as well. So writing the book, took my book, my book, I wrote a book, it took four years. Do you know about my book? No. Well, it’s a bit of a strange title I’ve got I’ve got it here. It’s called the unexpected way the stroke became the best thing that happened.
Kenya Robinson 27:13
Congratulations, I will be picking that up.
Bill Gasiamis 27:19
And the title came about because in the podcast, I had a conversation with a few people around episode 70. That person said, stroke was the best thing that happened to them. Clearly not at the time of the stroke, it was down the track or reflecting on how their life has evolved and changed. That’s what it became right. And same with me, that was my experience.
Bill Gasiamis 27:43
And writing the book was something that I had never done before. In my life, I was an academic, I never went to college, I never read a book pretty much until I was 37, maybe just a few of them. And got to the stage where I had a deadline. So I had somebody helping me to write the book. And it was supposed to take a year to write it.
Bill Gasiamis 28:10
And I did two years of research to get the information that I needed to get the book ready in my head and then a year to work with this person to get it out of my head and put it into pages. Well, the writing part, the actual writing part took two years. And the person helping me wasn’t that pleased with the fact that I extended the contract, you know, from 12 months to 24 months, because she didn’t get any extra.
Bill Gasiamis 28:39
She didn’t ask for anything extra. But there was just some days, when no matter what, nothing was gonna happen that day, I was not going to write a month went by I still hadn’t written. And it wasn’t from a lack of wanting, not wanting. Every time I wasn’t writing, I was thinking about I need to be writing I want to be writing. So it was just about the physical part of writing was not possible.
Bill Gasiamis 29:07
My head couldn’t turn the gears and the cogs in my head couldn’t turn at the rate that I needed to so that I can form a sentence or form a paragraph, etc. And it taught me that well, you just have to write when you get that window. however long that window is sometimes it was three days. Sometimes it was an entire month I got a like a second wind and a window of opportunity.
Bill Gasiamis 29:35
And I punched out as much writing as I could then and then I hadn’t written for two or three months and I would get an email going. How’s the book coming along? And it’d be like, I can’t explain it to you because you haven’t had a stroke and I don’t want you to ever know what it’s like.
Bill Gasiamis 29:53
But I haven’t done anything for three months. I’m very open and comfortable telling you I’ve done absolutely nothing in three months. And then it’s like. And then initially, it was me feeling bad about that. And then later, it’s like, you either like it or you don’t like it, you either accept that or you don’t accept that I can’t do anything about it. You know? It’s just how it is.
Kenya Robinson 30:15
Yeah. It’s kind of the unique thing that I think anyone who survives a stroke, understands and knows. I’ve tried to explain it to people who haven’t had a stroke. And it’s not that you can’t, but it’s like you can’t there’s a physical reaction within the body that says no. And I think you get that once your central nervous system approaches that period where it’s like, I’m scared. I don’t know what to do. So it shuts down certain parts of the body, certain parts of the mind. And if it doesn’t get that rest, it doesn’t allow you to produce. So I totally get that.
Bill Gasiamis 31:11
I get that. And, and the thing about it was that the some I was on somebody else’s timeline. And that was a big mistake, because that was not a motivator. Although that’s how she worked with every other client that she ever had. And it probably worked well, because it made her clients accept that deadline and work towards it. Whereas I couldn’t work towards if my life depended on it. I just couldn’t I had to I could not be on her deadline, because I wasn’t going to make it.
Kenya Robinson 31:45
Our lives do depend on it.
Young Person Stroke Survivor Getting Back To Jazzercise
Bill Gasiamis 31:47
Well, yeah, it depends on me not making that deadline. Because there’s no pushing through. For me, it’s a brick wall, you get to it. And then you have to rest to find a way around it. And pushing through was never going to work. So then you’ve slowly let go of one of the businesses and I imagine at the beginning, you’re not actually doing Jazzercise. You’re not back to that immediately. How long did it take you to get back to that?
Kenya Robinson 32:20
Awhile I’m, I want to say I had the stroke in October, I was released from outpatient, the following May or June. And they released me to begin teaching. That didn’t come right away. Probably by that October, November, I taught my first strength class. And even so that was a challenge.
Kenya Robinson 33:02
But in getting ready for it, I spent a lot of time in the floor. Let it and I always laugh about this, because anytime I talk about the floor, my memory is being back to rehab, and then dumping me out of my wheelchair and they’re like, Get up and I’m like, What are you talking about? You’re cool people, how dare you touch somebody who can’t move out of a wheelchair.
Kenya Robinson 33:26
And she got on my level. And she said, you may not always have someone to be with you, there may come a time that you’re alone, and you have a fall. And you need to know how to get up. Whether it’s getting to a couch, a chair of phone, you’ve got to take care of you. And I think that was an incredible lesson to teach when you’re kind of fragile, because it builds some strength in you to know that in a situation where you are. You don’t have what you need that you can get what you need to take care of you.
Kenya Robinson 34:10
So I took that and started all of my exercises in the floor. I would crawl because when you’re a baby you crawl and it helps you with balance. I did a lot of floor exercises. So when I taught strength, it would be from the floor to be able to get up and manage that balance. I did strength classes for probably a year and a half and then decided in 2023 that I would try the dance portion again.
Kenya Robinson 34:46
I think it’s okay. Does it look like it did before? Absolutely not. Is it getting there, I think for what it is now, I’d like to be able to do better. But I’m, I’m satisfied. But it took a lot like I’d spend nights just visualizing myself doing the movement. Or if I was in a car, I play the music repeatedly.
Kenya Robinson 35:24
Most of my customers seem to think that our class probably took what it would take an instructor normally to prepare, you know, maybe like the night before two days before, it actually would take me months to prepare one set, and then get into the mode of moving a song or two out or a new song in and having to play it for months, and rehearse it in my head, then rehearse it on the body, to where it felt more natural.
Kenya Robinson 35:55
The mirror has been so very helpful in correcting movements, because it gives my brain a chance to view what my body wants to do, even though my body does it one way, and my brain thinks that another when we teach classes we teach to the class. So my real, my left is actually my Jazzercise, right.
Kenya Robinson 36:23
So I’m killing the opposite. That has also been a play on the brain. But very helpful, I’m grateful for Jazzercise for so many reasons that it’s yeah, a lot very grateful, because it’s just help to just trigger trigger trigger in the mind to do different things.
Bill Gasiamis 36:48
Being able to be connected to your body is a big benefit. But as in having the skills, because of the work that you had done, previously in Jazzercise, already puts you a step ahead, because you have got neurons, and neuronal patterns and things firing in your brain that are connecting to your body more than most people.
Bill Gasiamis 37:28
Because if somebody is not as active, as you say, this identity and the majority of their time, they just spent sitting at a desk working for 15 years, instead of playing a sport or being physical in that way, you know, they’re having to rebuild all of those neuronal connections and structures from scratch, to try and just get back to basic level, whatever that level is for them.
Bill Gasiamis 37:58
Whereas you’ve got like that advantage from the beginning. And because of your deep work in that space, you can visualize and you can, you can translate what you’re seeing into a language that your body understands. And vice versa, you can take your body’s language, you can observe it, and then you can adjust it and then you can fix it. And you can do that.
Bill Gasiamis 38:28
That’s your skill. But that’s kind of what’s necessary for when you’ve got a body like ours, which is numb on one side and gives different feedback than the right side. So I’m born in June, so I’m a Gemini. So I now say that, you know, now I have the body of a Gemini, you know, one side completely different than the other side than our proper two personality kind of situation going on there.
Bill Gasiamis 38:58
And the best way to describe it to people so they understand. What it feels like to be me is that if I have an alcoholic drink, which I do from time to time, very rarely, but when we go out and it’s the right opportunity. My left side will get drunk immediately. While my right side is not. And recently, also experienced, nor recently often experienced in warm weather I experienced sweating on my left side but not on my right side. Interesting.
Kenya Robinson 39:36
Interesting. I have awareness with pain, the post stroke pain, got to be crazy. Learned how to calm things using the brain. But now things that should hurt, don’t. Like I go to the dentist and it’s like you’re probably gonna have pain for, nothing. I scratched or Bruce my hips never felt it. There’s bruising there, never felt it. And anything happens on the left side. I don’t feel I had surgery two days ago. No pain, there was little soreness yesterday, no pain.
Young Person Stroke Survivor Living With Altered Senses
Bill Gasiamis 40:31
Yeah, my wife will get in trouble because she will touch my hand gently. It’s really painful.
Kenya Robinson 40:42
My gosh, I can’t even sleep with sheets on the bed. Because to pull the sheet. Oh, that painful.
Bill Gasiamis 40:50
I have to sleep on my left side. So the sheet doesn’t touch my left side. So that squashed into the mattress so that it numbs the senses. So the senses don’t fire. And then my mum being just being herself, I’m standing in the way at her kitchen. She wants to walk past and I’m standing in her way. And there’s chitter chatter going and everyone’s talking and it’s loud.
Bill Gasiamis 41:19
And instead of saying, Can you move, she goes to pinch me on the butt, you know, just to make me move. And I can’t feel it this time, because when you do it hard, it doesn’t register. Like, like you said, like a punch would register on my right side. But on my left side, it kind of just registers like a push. Yeah. And she was pinching me and I wasn’t budging, or wasn’t moving at all.
Bill Gasiamis 41:45
And she’s going, can’t you feel me pinching you get out of the way. And I said to her, how long have you been pinching more, she goes too long. Get out of the way, look, sorry I can’t feel it I had no idea, you should have said can you please move. And it’s just like, the completely different parts of the body. So like I imagine, because I avoided physical exertion and exercise for a long time.
Bill Gasiamis 42:12
Because my thing is the gym. So I don’t mind going to the gym and just pushing the lightweight, just to get everything working and moving, etc. But I was afraid that if I go to the gym, I wouldn’t be able to judge my left hand, and it would let go or give way and then I’d be out of balance. And then I’d be struggling to lift the barbell or whatever. And I avoided it for many, many years, because I was afraid that I might drop a barbell and injure myself or somebody else, or, or dumbbell or something.
Bill Gasiamis 42:47
And recently, I went back and it’s and it’s that whole thing is not only do I have to pay attention to form and make sure I’m lifting carefully, just under normal circumstance, I’ve got to make sure that my left hand is in the correct position. It is capable of holding the weight that my right hand can definitely hold.
Bill Gasiamis 43:09
And that we’re getting an even movement so that I’m not putting, you know, pressure on one muscle group that I shouldn’t be or causing myself harm or something like that. getting my head around that has been a completely different experience than just like kind of coming to terms with my body through weights is again another level of learning and understanding that has just started that is going to take a while for me to get used to because I’ve got used to this weird version of my body all the other stuff. I’ve got used to it by now. But now throwing weights into the mix has started again, the learning again.
Kenya Robinson 43:55
It’s a whole other thing of balance.
Bill Gasiamis 44:01
So, in one way, that all the work that you did with Jazzercise, like is so beneficial not only for the things that you’ve already mentioned, but also the fact that you’ve just got way more going on in your head that’s around movement in particular directions, etc. That you’re, you’ve got that like advantage. I feel like it’s an advantage. Definitely.
Kenya Robinson 44:24
I agree. I definitely agree. It gave me something to hold on to that I know works. Because after the stroke, nothing felt like it worked on things that you know, easy things to do, like brushing your teeth and my right side is my dominant side. So how to to learn how to eat with my left hand. You know, it’s a lot of major changes but having Yeah, having that familiarity definitely gave me a starting point, or this is something I know.
Kenya Robinson 45:11
And even if it’s not the way I know it should look, we can start somewhere in practice. One of my physical therapists said, when we began that it takes three to 5000 times of doing something for to build one, Nora Graham. And that’s kind of how I’ve approached everything. Okay, we guide you through to practice in time. So let’s get busy locked in, let’s go. In this case, kind of, yeah, just been the approach. Let’s repeat, repeat, repeat, until it becomes something functional that we can accept.
Bill Gasiamis 45:47
How did they rectify the bleeding blood vessel in your head.
Kenya Robinson 45:54
I didn’t have to have surgery, they decided that they were just gonna watch it. And then I guess the blood kind of moves around the brain and absorbs. That became an issue again, when. So I mentioned earlier, the post straight shot pain was incredibly painful.
Kenya Robinson 46:18
And the therapists that dumped me on the floor in the wheelchair, recommended that I try aerial yoga, she brought someone to my home, who set up the apparatus, put me in the hammock and allow me to hang upside down. All the pain went away, my body did not know what to do with that. No pain upside down. talked to my doctor about it. And she’s like, you’ve had a hemorrhagic shock, you’re not supposed to be upside down on your head, I’m like, Look, I have no pain when I’m upside down.
Kenya Robinson 46:52
Like, the whole world should be in a hammock that like this is a beautiful thing. So she’s like, Alright, no more, maximum, two to four minutes upside down. But since I’ve started that, it’s changed my life, I could be in a huge flare, go upside down, nothing, bring then know what to do a bit. I’m happy the brain doesn’t know what to do with it. But that’s been another lifesaver. So it’s, sometimes you gotta get creative.
Bill Gasiamis 47:22
That is so interesting. So I know the doctor is going well, we don’t want to increase the blood pressure in your head, in case we create a situation where it might leak again. So I get that. Was there an underlying cause of why that blood vessel burst? Was it a faulty or malformed blood vessel? Or was it just that thing that people say is relaxed, you’re gonna pop a blood vessel, and that you actually popped a blood vessel?
Kenya Robinson 47:55
I don’t know. I do know that. When I got to the hospital. My blood pressure was off the charts. ridiculously high. But they’ve said the amount of stress that I was under at that time, could have led to that too, because I don’t have family history of shrug. Like, yeah, so this is kind of thing, I still would like to know that I’m still investigating.
Bill Gasiamis 48:27
And your blood pressure has returned to normal.
Kenya Robinson 48:31
Say it again?
Bill Gasiamis 48:32
Has your blood pressure returned to normal?
Kenya Robinson 48:34
Yeah. I was told that for the first five years, it has to be managed with medication. But if my numbers are good, then there will be a weaning off of sorts after the five years. So October 1, is that deadline for me.
Bill Gasiamis 48:54
Is there any other medication that you are required to take?
Kenya Robinson 48:58
The blood pressure is the only medication. The spasticity with the pain was bad, and I started baclofen then, but it’s been as needed. So I’ll take back live in before I teach a class and it tends to relax those muscles so that I can have a little bit more lyrical ability. So if I’m feeling tense, or I’m nervous, because sometimes you learn new routines, you want it to be fun and class doesn’t care, they just want to jump around and move in feel the excitement, but for us type A personalities, you know, we want to do it right.
Kenya Robinson 49:44
I can feel my body instantly start to lock and I’m like, okay, you know, now 45 minutes before class, I’m breathing, I’m meditating or I’m doing the breath work to get the muscles to settle down and I will use Bach loopback of in But time to kind of help with that. If I don’t have to use the medication I don’t. But I have found that that is definitely helpful with specificity because then I’ll be able to move a graceful arm rather than it’d be rigid. They’ll just flow. And that’s what we want. So, yeah, those are the only medications that I’m taking.
Developing Body Awareness For A Young Person Stroke Survivor
Bill Gasiamis 50:22
That’s pretty cool awareness though. Now stroke has done that to me, like it’s given me an insight into what your mood, your mind and the way that you’re speaking to yourself how it impacts the body, because the left side just responds, immediately, it gets tight, it’s tense. If I eat the wrong food, the left side gets weaker, it doesn’t respond so well to stimulus and all that kind of stuff.
Bill Gasiamis 50:52
So it’s all completely weird, like, so when I’m tired, you know, my left side goes to sleep, and it’s almost out out like a light and my right side, still pumping and going. But it’s telling my right side, hey, we need to rest and settle down. Yeah. And it’s a big indicator, it’s hard to it’s impossible to ignore, because you now have this complete system of information that says, Alright, you’ve got to stop, you gotta rest, you got to do less, or you got to change something.
Bill Gasiamis 51:33
So, what was family life like when you’re first diagnosed? Were you. I think what you said a bit earlier was that you’re in hospital for quite a number of time before you got home. Was that right?
Kenya Robinson 51:47
I spent six days in the hospital before they sent me to rehabilitation. I actually thought they were sending me to a nursing home. I was really sad because I was like, was my family going to leave me there. And when I got there, and they explained, you’re here to be able to learn how to function where your body is. So we want to be able to teach you some independence.
Kenya Robinson 52:17
And I was happy about that, because I was wheelchair bound. When I got to rehab, I was supposed to be there for three weeks to start. And I remember telling them no, I won’t be here for three weeks. My birthday is October 20. And I want to be done on the 19th. And they were like, yeah, it didn’t work like that. And I was like no, like, you have a plan for me. I plan to work it.
Kenya Robinson 52:49
I’d like to be out by the 19. And I was out by the 19th in a restaurant on the 20th celebrating my birthday. It just became in my mind like it’s go time whatever they ask, we’re going to do if they want to throw in extra, all these things, we’re going to have to remember Anessa the thing they hit me with when I went into rehab, she was she the nurse said yes.
Kenya Robinson 53:14
And you may suffer from aphasia. And with aphasia, you forget things you’ll be forgetful and I was like no, we’re not doing that. Like forgetfulness is a pet peeve. I don’t like that. And she was like, you have no control anymore. And I was like, No, we’re gonna have control. So day one, I was like, okay, chocolate chip cookies. Day two, the sky is blue. Okay, chocolate chip cookies, the sky is blue.
Kenya Robinson 53:42
So every day became something to remember from the previous day. And it became like this long thing of a habit. So that things didn’t get jumbled or scary. The fact that the words get jumped, that still happens, unfortunately, but the ability to figure out what it is. Now it’s a process of me slowing down, taking the time to think and if it doesn’t come out right away. That’s okay. I’ll find five or six other words of what I’m looking for before I finally get to it. That’s okay, too. So you play you know.
Bill Gasiamis 54:26
Take it as a game if you can and that I love that what you said about, you know, chocolate chip cookies, the sky is blue. Like, that’s just such a simple memory exercise might be hard for some people to get through. But it’s simple game to play, you know, and you could even attach that to a calendar. You know, you could even say Monday.
Bill Gasiamis 54:52
There was a chocolate chip cookie for lunch and then Tuesday, I went out and I looked up at the sky and the sky was blue like You can create a whole little sentence and thing that supports memory. And it’s just, you can do that, without any extra time or effort, you can do it sitting down, you know, you can do it, when you’re lying down in bed, you could do it at any time whatsoever.
Kenya Robinson 55:23
I’ve kept the practice at the start of the start of each year, I challenged myself to do something different. So this year, I bought a huge wall calendar that the from January to December, it sits on the wall, I’ve had trouble writing for the very longest. So in order to remember placing, at the end of each day, I’ll write down what I’ve successfully accomplished on a sticky note, and it goes up for that day. And I’ve kind of when I thought about doing this in, in January, it was for the piecing and the remembering.
Kenya Robinson 56:12
And then also, we need to celebrate the small successes. Because as you’re trying to get past all of the deficits of a stroke, you’re only thinking about where you have to go, you’re not thinking about how much you’ve achieved to get to where you are. So I figured it’d be a good way to mark that, too. So like, now we’re in July. And I have this, it’s very colorful of all these days of things that I feel like that done successfully.
Kenya Robinson 56:49
And that has been so helpful, even on the bad days to be able to look and say, Hey, you did some things well. And I’m i Yeah, I’m gonna have tears, I’m not gonna have to say the calendar has been extremely motivational and inspirational. My son walked in the other day, he’s like, wow, I think you’re the only person who can say you’ve known, you know, what you’ve done every day of this year, because it’s writing on the calendar.
Bill Gasiamis 57:23
It’s a visual journal, by the sound of it.
Kenya Robinson 57:27
It’s a visual journal, I love that, I think I might title it now, above at the very top that you can have.
Bill Gasiamis 57:37
Because I know, see, one of my big struggles with reading was that books are black and white, and bland, and there’s no pictures in them. And I don’t know how they take the pictures out of books, like even my book, I’ve written it and it hasn’t got pictures, but I don’t understand how we were taught to read, to read and see the picture in colors. So that we could have two visual representations of what that thing that we’re learning is about.
Bill Gasiamis 58:10
And then you get to a book as an adult, and it’s part of my friendship boring as batshit. It’s a real struggle, you know, to go into a book and not have because I’m a, I know that when people say I’m a visual learner, you’re not really a visual learner. But my preference is to visualize something to see it, then to read about it. And then to connect the two and to deeply embed that into my memory.
Bill Gasiamis 58:37
It’s much easier than to embed it when I’m just listening to it or just reading bland, black and white writing, text. So isn’t it interesting how we train kids to visualize these things to read and to connect the two and then we take that away from them. And I’ve never been good at journaling anything, I don’t journal or do anything like that. And I had to have people remind me of things.
Bill Gasiamis 59:06
But you record a video of yourself. And you watch that back. That’s that same thing. It’s the visualizing and seeing with your eyes, the whole picture, not just reading an in somebody’s interpretation of a doctor’s or my wife’s or my nurses or whoever it’s actually seeing, and I had a lot of I had a lot of times when I was at rehab trying to learn how to run and not for the sake of a marathon.
Bill Gasiamis 59:38
But just for the sake of because we went to outpatient rehab, and they said to me, what are some of your goals and I said, Look, I’d love to be able to run across the road just to get to safety if there’s a car coming or something. And I said okay, and he said Why haven’t you done it yet? And I was like, because I feel like when I run I run in a really bad form like a chicken and that would not be so I’ve to run across the road with you know, so he said, Well, why don’t I just record you running and you can see how you’re running.
Bill Gasiamis 1:00:09
And it was such a myth that I had created in my head because the feeling of my left side was so foreign to me. Although the form was very good, it was a ideal wasn’t perfect, but it was very good early on. I couldn’t, I couldn’t I couldn’t comprehend what my leg was telling me. So I had to see it. So that now I know, I’ve got a new language that my leg is providing for the same thing that I used to have, before that I was doing correct. And only visualizing and seeing was I convinced that I’m, in fact, them running in a good form.
Kenya Robinson 1:00:47
I love people who can run, like, I get that I yeah, I fully get that I was able to run in the first year, I have difficulty running now. So that’ll be something I know, right? You gotta, it’s the thing of you gotta keep at whatever you’re working at. And when you don’t work at it, you lose it. Running is actually a little bit of a fear of mine. And that’s why I’m going to attack that next.
Kenya Robinson 1:01:19
I don’t want to be afraid of anything. But I do have major concerns that I’ll be somewhere and we’ll need to get out quickly, and walk up and not be able to move. I don’t know if and when that day is coming. But I know that I want to do something to get prepared for if I need to move in a hurry is right now on the running, I’d love to be able to run.
Bill Gasiamis 1:01:50
There’s some crazy stroke survivors who might have foot drop, or they might have spasticity or something like that, and then they sign up for a damn marathon. And then somehow they get to train and they have this goal of completing a marathon, it might be a half marathon at the beginning of whatever. But I’ve interviewed some stroke survivors who just have overcome some really ridiculous obstacles to just run.
Bill Gasiamis 1:02:16
And to make it as difficult as it is for them to run with those conditions to still get to the other side of that marathon. You know, there’s a guy who follows me and I follow on Instagram, and, and A and T. Brian fitness. And he, he has foot drop and a limp or something like that. And his physical. Like, he trains people like he runs and does all that kind of stuff.
Bill Gasiamis 1:02:45
And he’s doing marathons and all this weird stuff. And then very early on in the I say weird because I just even when I was perfectly able to Oh would never run a marathon. Just I don’t see the point. But that’s just me, right. But maybe at the beginning of the podcast series, like very early on thinking, maybe back down to like, episode, where is it? Let me see if I can find it.
Bill Gasiamis 1:03:12
Episode 28. You know, Donna Campisi, she goes for. She’s had a stroke when she was a child. And in her 40s decided that she was going to run a marathon and she has foot drop and all that kind of stuff. And she talks about how she struggled and struggled and somehow got some training and everything and they completed 40 kilometers, it took forever, but they completed it.
Young Person Stroke Survivor: Running After The Stroke
Bill Gasiamis 1:03:36
And I’m gonna just what I’m trying to say is like, it’s possible. And whenever you get your head around that, and whenever you got the time for it, you know, just put yourself in that space of okay, let’s do the visual to your visual calendar. I ran one meter. I ran five meters today and I ran 10 meters and might get it better.
Kenya Robinson 1:04:05
I didn’t even enjoy running before the stroke. I know. I admire people who are like, Yeah, I run it releases stress, like no, my legs get to burn and no, thank you. But I feel like you’re challenging me. So maybe.
Bill Gasiamis 1:04:21
I am.
Kenya Robinson 1:04:22
Okay.
Bill Gasiamis 1:04:24
It’s a gentle challenge, there’s no timeline on it. It’s a seed, just planted the seed. That’s all I’m doing.
Kenya Robinson 1:04:34
I like the seed. I may take you up on that moment, and I’ll let you know.
Bill Gasiamis 1:04:39
And then it’s like, Oh, my God, I didn’t know that I could possibly run. Look at me. I’m running now. Oh my God, I identified as a runner, you know? And that’s it, right? You identify something new and you add another thing to your toolbox. And you did it in spite of all of the difficulties.
Kenya Robinson 1:05:00
Totally, because right now walking feels like stepping on Legos every day. I can’t imagine.
Bill Gasiamis 1:05:06
Thank you for describing it like that because that’s how it feels for me the left side. It’s like walking on Legos. Yes that’s such a great description. I go to the beach with my running shoes on. I never go into the water without shoes. Yeah, so you know, you’ve got a pair that always kind of needs to be thrown out, but you love them, you can’t throw them out. Because they got holes on it. Well, I keep them for the beach.
Kenya Robinson 1:05:38
Shoes are weird because my foot is still changing. So like there could be a pair last month that I absolutely could not work because they were painful. But didn’t they’ll be the most comfortable shoes ever. And then when they get uncomfortable, I’m like, okay, the foots changing again. So I’m I’m kind of playing now with some research regarding circulate Circulus circulation, sorry, circulation on the affected side.
Kenya Robinson 1:06:07
And how that relates to the Lego filling in the foot. Because I definitely have to drop, I work really hard at trying to get that exercise up. There’s a repetitive exercise that I do every single day, multiple times during the day doesn’t change the feeling, but it changes how far the toes come off the ground in that role through the foot because through the ball of my foot. I can’t fill.
Kenya Robinson 1:06:37
And then the there’s trickiness, because there’s no depth perception, especially with dancing, because I’m like, I don’t know how far I can actually go because it can’t feel it. And so there’s a little bit of play in the brain. But yeah, that Lego filling was crazy. But the research so far that I’ve been doing with circulation, and and getting the blood to really kind of pomp on the affected side has had some great benefits in the Blitz. So trying to see who I can work with to record this and share it and hopefully have it be helpful for having people who have Lego sensation, that’s what I call it.
Bill Gasiamis 1:07:25
That’s, I’m gonna start using that because I struggled to explain it to people, you know, I say, you know, if, if I stepped on a pebble with my right foot, I just know that there’s a pebble there. But if I step on the pebble with my left foot, it feels like there’s like a boulder there. And it’s just digging into every part of my foot.
Bill Gasiamis 1:07:43
And it’s really painful and uncomfortable. And it could make me trip over and it’s literally a pebble and it could be very small in size. But it could unsettle me and make me lose balance and fall over. Especially when I’m at the beach and the waves come through, right and at the same time you step on something that makes it feel like it’s sharp.
Kenya Robinson 1:08:07
It changes how you perceive things with walking, which is something that everybody has the right to, but it’s very different. And especially with the beach, got the waves rolling through, you got the feeling of the sand, but that grainy filling under the affected foot becomes a different story than it does to what we’re accustomed to.
Bill Gasiamis 1:08:35
A million pins and needles being pushed into the foot. I prefer now to use boots, slip on boots. So most of the time, if I can, I’ll just wear slip on boots because they kind of wrap the heel up and kind of protect it and keep it nice and warm and comfortable and safe. And then the shoe laces don’t dig into the top of my foot. And they just, you know, it’s just it’s a more comforting.
Kenya Robinson 1:09:10
People are like, why do you have boots on during the summer? I’m like, you have no idea, they’re comfortable.
Bill Gasiamis 1:09:17
And in winter, I could do the Michael Jackson and wear one glove on my left hand only. Just because it gets cold. Really, really cold on my left side.
Bill Gasiamis 1:09:28
Does cold lock you up?
Bill Gasiamis 1:09:30
It kind of makes me less sort of fluid, fluent, or free or whatever. Nobody would know but it feels stranger. It tenses the muscles and all that kind of stuff. And it burns the cold burns. And it becomes just like excruciating. And then it feels like the bones in my left hand. It feels like they’re frozen. You know, frozen came out of the refrigerator. They’re there, and they’re just solid.
Bill Gasiamis 1:10:01
So it’s that cold, and I can’t warm it up, I’ll get one glove and I’ll wear one glove. And I’ll try and just protect it a little more. Yeah, I like that. Yeah. And you know, you could you could be dazzled, you could put jewels on it and whatever. And you could make it like a proper Michael Jackson hand. And our generation would get it, at least the young ones would think what we eat, but we’d get it’s okay.
Kenya Robinson 1:10:36
To be special, yes, we do.
Bill Gasiamis 1:10:38
We went on a bit of a tangent, but I was asking you about your kids in the family, and how they manage all of your illness in your hospital, stay out of the kid, kids cope with all of that what was going on for them.
Kenya Robinson 1:10:57
My kids are very supportive, extremely supportive. Anything that I brought home to try and do, they engaged me. I know, when I first got home after rehab, I didn’t want to roll through the house in the wheelchair. So I scooted from room to room.
Kenya Robinson 1:11:21
And I would help with chores. So they would do laundry, and we’d sit on the floor, and I had attempt to fold it. When it was time to do dinner, they got down to the lower areas and would pull out what I needed. And then on one foot, I would try and put dinner together. And they would help. When it came to practicing walking, we had a long hallway.
Kenya Robinson 1:11:48
And so I would try and walk in, they would clap and cheer me on those days were really funny because that walk list. Walking, when you have to learn to walk again, it’s it’s comedy. But just extremely, extremely supportive. It got to a point that as soon as I felt like they were in a comfortable space, I know that I begin to kind of isolate and hide, just wanting them not to see.
Kenya Robinson 1:12:26
But just to feel like they had the sense that everything was okay. Not the right way to handle things. But when you’re in it, you don’t know, because you’re trying to cope, and you’re trying to make sure that that the people around you don’t have the fear from your trauma.
Kenya Robinson 1:12:47
My kids have since talked about that time. And I’m really grateful to have that information. Because I don’t know what it’s like to have been in their shoes. I know what it’s like to have been in my shoes. But I think that there has to be a conversation between both sides to have effective communication so that everybody is okay.
Bill Gasiamis 1:13:14
And you thought that you’re going to hide your condition from them. There’s no way you can hide it from anybody let alone your kids who know you intimately.
Kenya Robinson 1:13:25
Very much so in my mind, I thought if I could build good concepts of what was going on, and then suffer behind a closed door. Everything would be fine, because nobody went no vomiting, pain or mumps or even that part i If I could go back and do something differently, I would go back into that part. Because it becomes, the more that that’s practice, the more that that feels comfortable. So even now, in year five, I have to resist wanting to isolate, even though it feels very comfortable to be in that spot. It’s not a good thing for anyone.
Bill Gasiamis 1:14:12
I can relate to that. You’re also setting a bad example of how one should go about recovery, you know, teaching them that if they go through something later on in their life, that they should not tell anybody about it or keep it to themselves and pretend that everything is okay. Which ultimately is not because then they’re not receiving the assistance, the help the emotional, the mental health, the physical health that they might need.
Bill Gasiamis 1:14:40
And now you’re actually setting an amazing example, you know, that the visual diary that you’ve got on the wall there, I mean, that is another beautiful thing that they get to see all the time that tells them that this is how you can track once progress going forward. So if you ever get stuck, whether it’s a physical project or a personal project, or it’s a book project and you want to know how far you’ve got here, here’s a way that you can do that. That’s a such an amazing tool, you know, for them to see you put in place so that you can track things.
Kenya Robinson 1:15:26
Thank you.
The Hardest Thing About Being A Young Person Stroke Survivor
Bill Gasiamis 1:15:29
Tell me about what the hardest thing about stroke is for you.
Kenya Robinson 1:15:37
Okay, the first thing about stroke really from me was the pain of things coming. I call them when you’re frozen. Like for me, I felt frozen after my stroke. So when things would thaw it was most painful before it felt better. I can remember the first part to unthaw was my ribs. And when you have that weakened sensation, it’s almost like you can feel what your bones way.
Kenya Robinson 1:16:21
That’s how heavy it becomes. And when the ribs became alive, that was five and a half months of the worst pain of my life. Because you never know how long it’s gonna last, it just hurts. My back came alive. Eight and a half months of and I have a high tolerance for I really have a high tolerance for pain now, but I had a high tolerance for pain then.
Kenya Robinson 1:16:51
But I mean, we’re talking about liver like on a scale of one to 10 I’d be like 21 Like, I don’t know these, you can rate this. And I was doing that with no pain meds, just suffering through. But post stroke pain has been was the hardest thing for me. I was talking to a girlfriend who was told me about a pain clinic that she’d gone to. And as soon as we stopped talking, I called my doctor and I’m like, does this exist and she goes, Yes, and I’ll write yours now.
Kenya Robinson 1:17:26
And it was a 40 hour class, but you couldn’t get in the class until you were evaluated by their team, which included a physical therapist, a psychiatrist, and then a physical medicine doctor. So it was multiple appointments with them, because they want to make sure that you’re not trying to take your life that you’re in a healthy place to do this because you’re in pain, and it doesn’t turn off, you can’t get it to stop. And then after their evaluations, then you get to start the 40 hour course.
Kenya Robinson 1:18:03
So everybody in the room is having extreme pain. And at first I was like we’re all going to bite. I don’t know, I thought that we’re going to take on one another’s pain. But it really wasn’t that at all. They took us through looking at activities during the day, what we’re doing, how we’re doing it, how we’re communicating with people, like stressful when you come up against someone we don’t communicate well, your receptors go up in spike your pain, how to deal with that.
Kenya Robinson 1:18:38
And then different ways and forms of communicating so that you stay safe breathwork meditation I will always swear by that I had a person go Oh, you’re going to tell me I’m going to breathe my way to feeling better. Yes, it works. Especially when you take the time to learn how to do it. Sleep hygiene. Number one a benefit to helping pain so when you’re able to have four tools and resources of things that you can draw on to bring it down. Life changing
The Lessons From The Stroke From A Young Person Stroke Survivor
Bill Gasiamis 1:19:25
What has stroke taught you?
Kenya Robinson 1:19:31
What has stroke me? It does not all have to be done today. No really stroke has taught me how to pace my life and actually enjoy life. I don’t know that I enjoy life before the stroke. There’s part of me that will tell you I didn’t enjoy life recovering from stroke. But putting different tools in order to really figure out how to manage this, and live with it and not see as a consequence, has really changed my perspective a lot.
Bill Gasiamis 1:20:28
What would you say to somebody who’s listening in and maybe they’re very early on in their journey? What advice might you offer?
Young Person Stroke Survivor: Grace After A Stroke
Kenya Robinson 1:20:43
The number one thing I think is you have to give yourself grace. It’s a new period, it’s a new time of learning who you are. And that disk, the self discovery in that process is extremely important. You’ll get a lot of information, whether you take that from health professionals, your family, I always say find your stroke family first, because we get it like nobody else gets it, like, find your stroke family, click on say, hi, if they don’t answer, don’t worry about it, move on to the next person, somebody will reach out to you to help you figure these things out. I think that’s, that’s huge.
Kenya Robinson 1:21:32
And then because all of our strokes are different, take the things that that bring you joy, take the things that you find that bring you happiness, and diet is extremely important. And rest is extremely important. And I think when you begin to incorporate those things in your life, and you find the repetitiveness of a beginning schedule of things that you do during the day, then you just work to improve upon that.
Kenya Robinson 1:22:04
Based on what you feel successful. And it’s good to stay in a positive place. It’s okay to have bad days. So Kate cry, you become, I think stroke makes every makes you hyper aware of your feelings. I cry way more than I ever cried, and I hate that. But I find if I get it out, then I feel incredibly I feel so much better afterwards. So there’ll be some terrible days. You got to scream and yell just do it.
Kenya Robinson 1:22:38
Folks around you will get used to it. You do the things that make you better but most of all, you’ve got to give yourself grace. It’s not easy. And it’s it’s there’s it’s hard. It just is it’s hard but it gets better. It gets better and celebrate the small successes. No matter how small you woke up in the morning, celebrate it.
Kenya Robinson 1:23:00
You went to bed on time, the night before celebrate it, your favorite TV shows coming out celebrating. We’re celebrating all ever celebrate everything because celebration feels good. It feels good in the soul. So do things that make you feel good in your soul. And if you don’t if you wonder what that is call me we’ll talk about it we’ll find good things in your soul.
Bill Gasiamis 1:23:23
And, on that note, thank you so much for joining me on the podcast. I really appreciate it.
Kenya Robinson 1:23:27
Thank you, Bill. I appreciate talking to you it’s been a great conversation. Thank you.
Bill Gasiamis 1:23:33
Yeah, had a lot of fun too. Thanks. Well, that’s it for another episode of the podcast. Remember, if you’re interested in my book about stroke recovery, you can grab your copy on Amazon by typing my name Bill Gasiamis into the search bar, or by heading over to recoveryafterstroke.com/book.
Bill Gasiamis 1:23:51
If you want to know more about my amazing guests visit recoveryafterstroke.com/episodes and find their social media links and download a full transcript of that entire interview. A huge thank you to everyone who has left a review it means the world to me your feedback is crucial for the podcast success, helping others find this valuable content and hopefully making their stroke recovery journey a little bit easier.
Bill Gasiamis 1:24:19
If you haven’t left a review, please consider giving a five-star rating and sharing what the show means to you on iTunes and Spotify. For those watching on YouTube, remember to leave a comment below, like the episode and subscribe to the show on the platform of your choice to get notifications of future episodes. And if you are a stroke survivor with a story to share and now is the perfect time to join me on the show.
Bill Gasiamis 1:24:45
The interviews are unscripted and require no preparation. Just be yourself and share your experience to help others in similar situations. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show Simply visit recoveryafterstroke.com/contact, fill out the form with your category and I’ll get back to you with details on how we can connect via Zoom. Thanks once again for being here and listening Your support means everything to me. See you on the next episode
Intro 1:25:22
importantly, we present many podcast designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed all content on this website at any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.
Intro 1:25:52
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Intro 1:26:16
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Intro 1:26:43
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