49. Surviving Stroke - Unseen Struggles and Daily Challenges Revealed

In today’s episode, I explore the often-unseen challenges stroke survivors face daily, like cognitive fatigue, brain fog, and isolation. I’ll share how I’ve adjusted my self-esteem and body image post-stroke, and discuss the psychological toll of recovery. We’ll also highlight the importance of building a safe, interactive community for survivors, such as "The Center" by Survivor Science. Plus, I’ll discuss the benefits of breathing exercises, staying active, and how small health habit changes can make a big difference.
We’ll also touch on recognizing and addressing financial and employment challenges in recovery. Understanding these hidden battles is crucial for caregivers and survivors alike. Whether it’s navigating medical costs, adjusting to relationships, or finding new ways to engage with life post-stroke, this episode sheds light on recovery realities. I’ll share tips on coping mechanisms, like meditation and breathwork, that have helped manage cognitive effects and mental exhaustion.
🌟 Challenges of Stroke Recovery:
- Cognitive fatigue, brain fog, and sensory overload
- Isolation struggles and adjusting to relationships
- The psychological toll of fear, anxiety, and self-esteem issues
Personal Experience with Stroke Recovery:
- Intensity and commitment to workouts
- Muscle atrophy, driving insecurity, and body image struggles
Impact on Daily Life:
- Mental exhaustion, balance issues, and coping mechanisms
- Challenges of sharing struggles on social media
Resources and Support for Stroke Survivors:
- The importance of a safe, interactive community
- Navigating medical costs and the need for support systems
Lifestyle Changes and Health Habits Post-Stroke:
- Impact of good health habits on recovery
- Breathing exercises for cognitive fatigue and focus
- Re-evaluating lifestyle and entertainment choices for relaxation
💬 Engage with Us: Your stories are valuable and worth sharing! Share them at podcast@lovablesurvivor.com
🌟 Support: If you’re inspired, support us with a like, subscription, and review on Apple Podcasts. Don’t forget to join the community at The Center by Survivor Scienc
💖 Let's Connect! Bye for Now 👋 (IYKYK)
Let's Chat -> https://calendly.com/survivorscience/
Twitter - https://twitter.com/ThinkLovable
LinkedIn - https://www.linkedin.com/in/willschmierer/
TikTok - https://www.tiktok.com/@thinklovable
Email - podcast [at] lovablesurvivor [.] com
💖 Check out the new websites!!⤵️
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Medical Disclaimer: All content found on this channel is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. The information provided, while based on personal experiences, should not replace professional medical counsel. Always consult with your physician or another qualified health provider for any questions you have regarding a medical condition or treatment. Always seek professional advice before starting a new exercise or therapy regimen.
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Yo. Yo. Yo. Yo. What up. What up. What up. What up. Alright. This is episode 47 coming up in a little bit here. Just before we get started, a couple of quick notes. This episode, we talk a lot about grit.
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Came up in a couple of different areas this week in particular, but I really wanted to kinda hit on the definition of grit. Bunch of things I did so I probably should have mentioned because I had really a ton of notes. This is a big topic. It's something I'm super passionate about.
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I I really love the topic of grit from the survivor perspective, from Angela Duckworth's perspective as it relates to psychology. A lot of crossover here between real life my interest in it and kind of the the program I'm in for psychology, pursuing my master's. I think grit is a big topic.
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I saw a livestream this week with a couple of people who were talking about grit, fellow socokes, survivors.
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I think, you know, I think there's a lot of things to think about that I know. I keep saying I think. People, I believe, it's for me, it feels natural, but I also understand it may not be natural tendency for everybody, and I think that's true a lot of things in life. Right?
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Some people like this thing or that thing. Other people don't you know?
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Some people do not enjoy sports. Regardless, it's a big topic. It really became popular, I think. I've always heard about it, but it's I think Angela Duckworth's work and research over at UPenn up north.
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And the book, of course, really catapult to to a new level. You know, she's big into it. I I anyways, it's a big topic. It'll be probably this podcast will probably do at least 1 or 2 more episodes on grit. Also doing a newsletter series, with the Survivor Science blog on grit.
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You know, first, get an understanding of what it is, why it matters, what it takes, how you can develop it over time. The good news is if you don't find yourself to be particularly gritty, if you are a stroke survivor, you probably have found that you become gritty.
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It's, you know and then there's tips. We can go into that different. It's a really big topic, and we can go a ton of different ways with it. But I'm just always into it. I feel like it's it speaks to survivors. Even if you weren't particularly into it before, you might be now. Great. It's a cool topic. Lots of good stuff to talk about.
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Anyways, remember, you can go join the center, center.survivorscience.com, or you can just go over to survivorscience.com and look there up in the menu, and you'll see access to the center. Anyways, this is a really good topic. Can't wait to talk about it some more, but for now, for this week, for episode 47, please enjoy this episode starting.
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Welcome back to another episode of the Lovellsara podcast. This week 47, we are gonna be talking about one of my favorite topics. It is a passion. It is a a big fun topic.
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I'm excited about it. It's one of my favorite things to talk about. It is talking about grit and in particular, so the history of grit is second episode.
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I just love the word grit. I don't know if it's an East Coast thing, if that's do with where I grew up in Jersey and New York up on the East Coast, went to school at Miami. Which is just a word that Angela Duckworth, I think, is responsible for kind of bringing back clarity of the word itself, but so there's there's a lot of definite there's a lot of definitions. There's a lot of different things that relate to grit. Grit is also something that can be developed over time. So I'm gonna talk about kind of the history about it, introduce some of the main topics of we'll go over Angela Duckworth's stuff. She is somebody that I'm looking at her work as a stroke survivor, kind of building a little bit of a series for survivor science, like a 3 part series I'm hoping to do. I just released the first blog post on survivor science yesterday about grit, which a podcast. I just think grit is something and it's weird. I don't know how to say. It's just it's something that strikes a chord with me. It's something that motivates me. I feel like I have grittiness. I feel like a lot of us as survivors have different levels of grittiness, are also very they like to get after it. They like to do things that are hard.
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Most of us, as survivors, don't have a choice. Everything is hard, and we have to do it anyways. So, yeah, we'll talk about the GRIT score with Angela Duckworth in her book, Grit, which is a great book if you have amend it. Enjoy reading. There's also the Audible version. Even if you do enjoy reading, but just for whatever reason would rather listen to it, it's available there. Yeah. And then some we'll go into some personal stories, you know, for me and then themes.
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There's a study that I was looking at. There's a lot of studies that I'm looking at when it relates to grit and strokes of ours, some better than others. I don't have a ton of great ones for this particular episode. Some of the ones that I was looking recently in, like, past week or so were they're they're not bad studies. They're just they kinda lack a large sample size. So, again, it's a good study. I think certain studies are good and important, although I am learning this term. I think I have some strong opinions when it comes to research and the work being done in a lot of different fields, you know, but it this field, so some people may see the need for research in these few in certain areas that I just I read a lot of things in class now. I'm just, like, why is anybody researching this?
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Like, what is the benefit?
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You know, just to be a quick example before it happened to the episode.
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Awesome topic. There are things that I really wanna talk about because of the Olympics going on right now. Grit has come to the forefront again for me. I just thought it'd be a good episode to do and a good topic to write about. It's just something I'm really interested in and passionate about. What does it take to rebuild as a service? You know, I I always give this example, but, actually, I'll hold off on the study, but I do have thoughts about some of the research being done in the psychology field and perhaps why it's seen as you in terms of the science community, sometimes it's seen as a lesser scientific discipline.
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I think I know why. Because there are some things that just yeah. I don't know. I'm sure it happens in every segment of science or area, like, you know, if we're being honest, there are certain areas of science that affect everyday life and there are certain areas of science that are much more theoretical.
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So I I think you can make a case for the you can make a case to make the case for anything at any time. Yeah. Anyways okay. So let's hop into this week's episode, episode 47.
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Great. Great is something for both stroke survivor, something I think it's something that we're born with in a lot of case. I know for me, I've always been kind of a gritty guy. I don't know if that's the way I was raised or where I grew up. Again, I'm very East Coast biased.
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There's nothing I'm ashamed of or nothing I'm shy from saying.
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I do think there is I've I've been you know, when I went to Miami, I met kids from the Midwest.
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I've met people from every state in the United States, every territory, every I've met Americans abroad, overseas. I've lived in Europe.
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There is a toughness, I think, along with living in certain places. And I think that but, again, you can make the case that there are plenty of people that are less gritty and still very much East Coast bias. So the study, in particular, on grit, I don't think we'll get into this episode. Maybe if I find another one that's a little bit better, I'll share with you. I may put a link to the study that I was reading, but it did give me my wheels turning and thinking about grit and how it pertains to stroke recovery. I think really understanding grit is probably the first and foremost, the most important thing. According to Angela Duckworth and, again, this a summary, you know, Angela Duckworth in her book Grit defines it as perseverance, passion for long term goals. It's a combination that helps individuals push through challenges and achieve success.
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And, you know, success for stroke survivor looks very different, stroke survivor to stroke survivor, because I've been thinking about too, as I've been doing more writing, What is the best way to help people who are listening to the podcast? What is the best way to help people who wanna hear from stroke survivors on social media?
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And are there different areas that I can help stroke survivors? And, also, this week, I had an epiphany. It's help people who may be on the path to a stroke and not even know it. I was thinking about this because, like, on some platforms, there are lots of stroke survivors, so you could talk to other survivors because survivors often wanna hear from other survivors, what they're doing, what they're trying. That's kind of the precipice. Survivor Science and, in particular, the center over at Survivor Science, which is the online community portion, where I wanna build more community where we can share those resources and share clips and and whether it's sharing social media clips from different platforms, just different studies that we find, different different group chats. You know, maybe you're more remote in the States or abroad, and you don't have access to certain things that you really want. Part of the main reason and focus around Survivor Science Center is to break free of isolation.
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We'd all want to get back to some sense of and have our own in real life friends, in real life stroke groups.
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Those are all very necessary, but sometimes you have questions.
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The purpose of the center is really so that people can ask a question, whether you're an early riser or or more an afternoon person as it's the different chat rooms. You know, if people are online, post a thread, post a question. What's something you're trying to work on this week?
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You know, I can't think of I'm at my phone must have thousands of notes of questions that I wanna go look up after I'm at the gym every day. You know, this is, of course, over the course of but I look back at my phone sometimes, and there's still questions that I I had and I forgot I had, you know. As a survivor, I think we try to do all the things and remember all the things and, you know, sometimes it's possible. Sometimes you just get tired in a given day and you run 20 miles and you forget all the questions you had earlier in the day that you want. And so where am I going with that? You know, Angela Duckworth, SendGrid, it's it it is the combination of all those things, but I think it's even more than that. It's what you know, what is it? It is about finding, you know set 2. Right? And I think that's Tom. I think I need to get back to recording in the middle of the day where I work out half the day and get back over here to record before finishing my runs for the day because I'm finding that I'm a little bit more exhausted than I would like to be when recording the podcast. But, anyways yeah. Grid and how that applies okay. So kinda just reviewing some of my notes from the blog post yesterday. You know, Angela Duckworth is kind of the pioneer in the last couple of years for sure about, you know, bringing grit to the forefront, and I just have a lot of thoughts and feelings that I haven't really hear, but it's like again, it it consists of passion and perseverance, and I think for stroke survivors in particular, that could be difficult. In the short term, I think as stroke survivors, we all wanna get better as fast as possible. Right?
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But, really, now going into year 5, I realized that, yes, I can get better. Yes.
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I want to get better. Yes. I want to prove people wrong. Yes. I wanna get better for myself and my family. But sometimes, it is hard to keep the passion going. Sometimes, I think we can find different challenges and plateaus. And how do you how do you rise above keep pushing through that's the perseverance part. I mean, this is a really to be honest, this is a big topic, and I think we're definitely gonna have to do more than one episode due because I'm sure after I listen back to this episode, I'm gonna figure out that there were 40 other things they wanted us to say, but sometimes, it to stick through the difficult times, and I think we all encounter those strokes of errors often is it can be it can be a lot of things. It can be frustrating.
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That's not even the best word to describe it, but it can be difficult.
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You have probably it's difficult days as a survivor. It's very frustrating, even 5 years out to go over and over and keep trying. Like, it's hard one.
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Alright. Let's make it sound easier. It's hard to do the things that were so once you know, we'd we were talking about in group. It's walking. It's picking up a coffee cup. It's pouring coffees. It's to all the menial things in life that we all took for granted prior to our stroke, and those who aren't stroke servers survivor, and now it's just like it's frustrating to not be able to do the things that you so effort did once upon a time.
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And I think in the beginning for me, maybe you feel this way too, it's like in the beginning, I was frustrated. I'm annoyed, and I'm still those things, but I I'm learning to kind of these days, I think as time goes on, you just kind of realize that that that this is where grit comes in. Right? It's that stick to itiveness. It's like, okay. Yes. I used to be able to do it effortlessly and without any thought. Now everything is hard and more challenging that I'd ever wanted to be for anyone, including my but I have 2 options. I I kinda it's very much in the in the in the coaching space. We often talk about reframing things, and I I have just started to begin, again, 5 years out from my stroke. Began think about things and reframing them. And what do I mean by that?
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I mean, instead of being pissed that I can't do a thing, I just try to take that thing that I'm currently trying to do and figuring out a couple of things. I'm trying to figure how important the is this to me? Do for my suborders, I just ask for help. And then in that same moment, I'm thinking, if I ask for help, I I won't get better at doing this. So I have to decide, is this something I want to tackle right now? Is this something I should even tackle?
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Again, use your judgment here, but this is a dumb example, but I'm gonna use example, pouring hot coffee.
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Wouldn't be a problem, but I have MS. So my hands can sometimes be a little more shaky than I would like to them to be and especially get depending on the time of day. Obviously, now I tend to drink coffee in the earlier part of the day. I'm just oh, that if I'm careful and I just pay attention, doesn't mean it's not annoying. It just means I do know I can do it if I focus and pay attention. And so I'm forcing myself to do those uncomfortable things, things I once took for granted, things I never ever ever ever gave up because you just did them prior to your stroke. Now I have to think about them.
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Now I'm starting to think about them, and I'm starting to do them.
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This is not in every case. This is not doesn't apply to everything, but it's it's and it and it doesn't make it any less frustrating.
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It just me in year 5, I am starting to see okay. If I force myself to do it, I know I can do it, and I can do it safely. Cool.
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Now that I can do it safely, even if it takes me an extra 2 seconds, I can do it, and that forces me to do it and that forces me to grow. How does this relate to grit? It's doing the thing.
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This doesn't rest this doesn't necessarily correlate to the passion side of grit, but it's like, I know my passion is to get better as the structure of our. I'm not going to get I don't have a chance to get to a 100% if I don't give my a 100%.
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How do you get to a 100%? You gotta do the thing that you currently hate doing that you never gave a thought to prior to your stroke that is now a thing you have to give a thought to.
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It's just tough. It's it's annoying, but if you stick with it, eventually, it again, it is annoying even at 40, so I can only imagine if you're older an older stroke survivor. It's gotta be incredibly annoying.
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I don't know if you feel the same way. I feel like I went back at 37. I felt like a lot of my physical motor skills, a lot of the deficits I have, I feel like a 5 to 10 year old just happens to be the age of my boys.
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And I see them do it. And I get annoyed because they can almost there are certain tasks they could still do better than me. It's annoying, but I keep working at it. I don't know why. Well, I do know why. It's because I want to get better and I don't give up.
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And to me, grit is it is a combination of passion and perseverance in achieving long term goals. I guess the long term goal is to I am playing catch up. Right? Like, now, I'm 40.
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So my motor skills are on par with a 5 to 10 year old.
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They don't get better if I don't practice at all. So there are 2 choices. You can either ignore it and just never get better at it, or you can keep fighting the good fight. And I think that stick to itiveness, you know, sometime, I just I I don't like sitting on the sidelines. I heard that some from somebody, a fellow survivor. The kind of guy that wants to sit on the sidelines. I like to do things for myself. I think as true survivors, we all want that sense of independence back. Yes. There are concessions. Yes. There are things that I I you know, you do have to pick and choose, I think, at some points, but it's just yeah. Grit is really committed and focused on the goal, and my goal is to get better long term, though. It's not without obstacles. There are obstacles on it weekly, daily, monthly, yearly basis.
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I just keep pushing through. I think it makes me better. I think it makes me stronger mentally and physically, and I think, yeah, I episodes since we started the podcast, we're now in episode 47. I will never not say this, but, yeah, would rather not have a stroke. Absolutely. However, I think my mental toughness, my physical well-being actually too are some of the strongest I've ever been in I think in a lot of ways, that is the upside of having a stroke at 47 or 37. Sorry. Episode 47.
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But, again, it's not without challenges. There are there are challenges. There's days of failure and rejection, adversity, and yeah. It's not easy.
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It is annoying, especially too. Right? Some of the worst times are, like, when you're out there and you're trying to do a thing. You're trying to improve on it, and it just I I've been thinking about this because there's a new product that I just learned about yesterday. Actually, it's not new. I just have never heard of it before. Not Teams. I just I guess, I never saw it in different forums. I never heard about it for any of my therapists, and I've gone to a a number of different locations here in the Florida area to for different therapies, different groups.
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It's called the NeuroSleeve. You know, I'm not there are something I'm looking into in terms of just getting the it's it's a really cool product. If you are a Strokes Bar or know a Strokes Barre, our care caretaker yeah. The NeuroSleeve looks really promising. It's again, I can't believe I hadn't heard of it before or nobody that I known.
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And I did mention they're like, oh, this is cool. I've never heard of this. Am I gonna great. Which is incredibly frustrating, right, when you are going to rehabs and you're hoping that your rehab facilities, even if they can't give you the products or insurance won't cover it, it's nice to hear about things because you wanna know what's on the market. And it's like, they don't care. They they do. But I'm just surprised they hadn't heard about it.
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I was bringing it to them. This is not the first time. I think this happens a lot. And to be fair, it's basically so the NeuroSleeve is like a if you think of if you had an AFO, I've heard of an AFO, it have they've had a stroke or MS, in right case, both. I suffer from drop foot.
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My strengthened my legs quite a bit. I no longer use the AFO, but I still have certainly moments, days, and it comes in waves. But the nose sleeve is really promising. Or advanced piece of equipment.
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And, again, I saw the the CEO, the creator of the product on on Jerry Wald's YouTube live show, which is every Tuesday Thursdays at 11 AM EST. So if you are on YouTube, LinkedIn, which I think is Facebook, he streams to a couple even x in Twitter. Great show. Jerry's a cool guy. Really enjoyed my time on his pa on his show a couple weeks ago, last month in July.
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But the Nova Sleep, again, this is a product that I'm really looking forward to trying because it it's not insurance approved, so it is an out of pocket expense, and it requires a prescription, I believe, from your, your doctor.
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The the purpose of it is to help those who are mobile and hopefully at a wheelchair, maybe getting close to the end of the walker.
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Again, even if you have an AFO, AFO is great to get started, but you don't wanna become wholly dependent on the AFO.
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At some point, you if you're walking with an AFO, the goal is to walk pretty normal or or, you know, safely, at least, on on your own.
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This neurosleep actually What's cool about is it all those neural connections from your brain all the way down to your feet, you know, especially on your affected side, Those connections are broken. They're they're miss the things are misfiring, and it really helps. I the way I understand it as of right now, I'm kind of like between a brace and yeah.
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Not a cast, I guess. Brace would be a good cut. You know, maybe they tried to design it as kind of an if you ever seen a basketball player where those legs sleeves very similar to that, but it's got things built in where it's gets the device gets connected. So you strap it, kind of leg sleeve if you ever they seen those for runners or, again, basketball players wear them a lot now. Athletes in general wear a lot of them. But this one in particular helps with the mechanics and getting the neurons and then and all the wiring inside the leg and brain. It it helps connect all the things because one of the big things as as a runner is, like, I feel, like, sometimes there are
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