13. Breaking the Gate: Why Information-Sharing Matters in Stroke Recovery

What's up everybody, this will just a couple of quick notes before we hop into this episode of the podcast. want to remind everybody that you can certainly leave a review of the podcast if you're enjoying it on your favorite podcast player app. Or you can leave one directly our website podcast at Lone Wolf survivor.com. All the ratings and reviews really do help the show grow. And we'd really appreciate it. Also, if you're interested in learning more about the community that we're building, if you go sign up for updates and details at VIP dot survivor science.com. And without further ado, let's hop into this week's episode. My name is Will Schmierer. And welcome back to another episode of The Lovable Survivor Podcast. Today in Episode 13, we're going to talk about gate- keeping information. Now this sounds like weird topic. But let me preface I think there is a very big disconnect when it comes to the medical scientific and survivor community. What I mean is that there are sort of different lanes. There are researchers, clinicians, survivors, caregivers, caretakers, family, all these different lanes, they all play a role. And they're all a little different. But I think the issue is, a lot of them don't seem to talk to one another. Researchers research because that's where the money is. In the science. The missions are the ones who are drawn to helping people get better. They are, you know, the ones. So to say on the ground level, they're the ones implementing all the research all the tools for the survivors. And what's tricky is I don't think this is happening necessarily our intent. I just think it's what happened. I think, no, I know, the reason that happened is because people like every facet of life, people get very involved in their, their world, right? They get involved in the work they're doing, they don't unintentionally, try to keep people out of the loop. It's just researchers at, you know, get into this world, they're, they're doing the work. They're doing the science, they're there. They're digging in finding different things, testing different things, there are a whole scientific process, they're going through their hypothesis, or they're trying to connect the dots. You know, and they're trying to do so on behalf of clinicians and drivers. Because ultimately, they want to help you, but I think what happens is so many times, and it's weird, I don't know, if it's because the money if it has the science, like I get it, I understand if you are working in something's not whether it's, you know, cancer, stroke, there are different fields, and there are things that we have problems that we haven't yet solved in these fields. Right? Nobody has thought your cancer or any really. But there, there could be right. So I understand some of the keeping in that regard. Because if somebody were to be sitting upon the answer during cancer, of course, you know, that's going to be the biggest deal ever. I'm not going to be a week later that I understand why that might be kept under lock and key for a while. That could be a big deal. is a big deal. I'm talking about is more of the everyday sort of scientific and just regular old information. And what brought this on me brought this up for me this week. In doing research for the show. I be going down these rabbit. I keep finding that as somebody who is pretty involved in It is recovery. And not only for myself, but the you know, the driver behind this podcast is wanting to help other survivors get the information that I wish I had out earlier sooner. I don't know that you can necessarily do something with that always, but like going through this process, not that at nauseam. I think there are things that I've heard, there are things that I've heard in passing, there are things that I wish people stopped that a little more firmly so that I could like, either make a note to myself, or have somebody else make a note, circle back to it. Because you get overwhelmed as a survivor with the amount of information coming your way. Sometimes it can be overwhelming myself, sometimes just not physically or mentally be ready to receive the information. Doesn't mean it's not good information is just simply not enough thought. To utilize that. I think, you know, again, it's just something I've observed in the last couple weeks, whether it's the research that I've been doing on my own, or for the show, I am still very much actively in recovery myself. I am therapy this year. Again, physical therapy, occupational therapy. I really love therapy. And the way the healthcare system is set up here in the US, most insurance companies typically only give you X amount of dollars per year, which is weird, because I pay a ton of money out of pocket for myself, and my family or the insurance. And yeah, I mean, I've got my money's worth over the last couple years do money's worth. And I'm complaining a little but it just seems odd that I can't just keep doing the work get better if I could, and I wouldn't be going or relying on long term. But I don't think this show is about healthcare, in general. And it really behooves us to get too far down that rabbit hole. I just think it's interesting. Sometime so let's not go too far down that, again. Really what I'm talking about is beyond health insurance things and going back to that keeping of information understand it to some degree as we're developing as a tool and certainly should be there. You develop something you should be like you should be talking about that about is the literature some of the what really brought on brought this by the forefront of my mind this week is that you don't need to read the book that I meant. I'm hoping for caregivers, drivers the holistic guide getting getting your life back. Again, what brought to the forefront me with that in the book after nine endo you know this this chapter on the typical like getting back the walk out of survivors who have walked affected. One of the biggest things again, going back and I know it was for me going from standing, walking. Being in a wheelchair, obviously, the walk was super important and something that features back almost immediately was the number that being said I was surprised I was doing a read every time. Now I may have heard about the Red Book. This topic of neural paths. brain rewiring itself I haven't know too much that so I think it requires a much larger question. But neuroplasticity is always on because I am in year three of my recovery and my brain. For me. I continuously work because I'm not giving up like I am hell bent on doing so most invest it out, I was starting in a different place than other survivors, I had a lot of underlying distance that came to light. At the time of my stroke, I realized even say, my recovery journey has been a little bit longer than some to be for a number of reasons that I know, for it is definitely, I had a number of other issues that I don't really talk about. Because I never thought I'd be the guy to be talking about this stuff period. Was never not talking about this be a use this I really talked about now from perspective. I've been through it on the last couple years. And I really, if I can help other people not only avoid this for a bit, I would love to, I wouldn't know. I think most survivors can agree. A and on a level what you go through but a stroke is really is gonna sound Korea stroke is no big fucking deal. It is something that is going to change your life profoundly. If you're lucky, and do not have a lot of long term, residual deficits, if you're in that 10% With that don't give that be honest on that 10% fully recover. You know, God, I'm ecstatic for you, I want you to win, I want survivors who are wanting to do the work, absolutely get back to life as they know it on it. And sometimes, you know, little aside here is that maybe when you have a stroke, go through this. I love the idea of a second death, like you can take that time to sort of reassess like, okay, you know, maybe I made these decisions that I didn't like. And now I have the ability to make choices that are more aligned with my long term goals. I'm lucky in that regard that happened at 37. It's not my favorite thing to do. But I'm able to go now I have to rebuild myself and my life. I'm able to make different choices. Not everybody gets that. I'm or that boys? No. It's hard. I mean, I just I think obviously is not ideal. I'd certainly rather never have had broke, but I I've learned some valuable lessons as a result of having my stroke. That's why this podcast, take me a couple of years to get into this. Again, this only because I never wanted to be the guy that was known as the stroke driver. I really as big as I am and as much of a personality as I am. To my friends and family, you know, I would rather just been a guy you know, it's fun to be around and has fun with his family and does all these things. But here we are now almost broke driver. But again, going back to some of this stuff. All right, all phone calls are recorded. But the thing that I came up with the reason I bring this up in that book chapter nine, about principles of neuropathy. This is what really gets me fired up and why I'm so fired up for this podcast. Absolutely. This specific phrase. I'm just gonna read through types of physical therapy, you will not see us that are worthy of your time and investigate based on the principles of neuroplasticity. Now to be fair, I don't think this is necessarily 100% accurate. Just because times have changed this book was written in 2009. Copy I have a point nine. But I gotta tell you, neuroplasticity is a real thing. That is a real proven thing. Right? Know the brain, he will have honestly more than we know, we know very little about brain care about so many other topics. So I think just dismiss neuroplasticity, saying I'll tell you firsthand. And I know the brain rewires itself because how do you go eating and running your whole life? Or 39 years, 10 months going all that time, 200 days in a row of running five miles at a minimum 200 days after having a stroke after being diagnosed? Ms. How does my brain suddenly decide? What, now's a good time to start running? So if you were on the fence about neuroplasticity, don't think the brain can rewire itself? At any point? Let me just be the first to tell you. It asked. However, I've read some of these other books. I guess I didn't pay attention when I read those books. But again, statement that types of physical therapy, hear about the US who's in charge. I want to talk to who's in charge, because why am I not hearing about this from any medical professional? At all? I believe I've heard about these two. There's two methods, the Feldenkrais Method, which was developed nine cities. I felt in Christ and then that is the brains way of feeling alright, that was booked by dark red is very early on then up and that annual method of neural movement, which is kind of a take on Feldenkrais, like, honestly, Oh, nobody, many people are pretty active stroke survivor in the community. Like I'm not blaming anybody, but like, you know, I, I'm lucky and fortunate to be out of touch with a, one of the major medical network in southeast us, certainly in Florida, one of the best ever programs and facilities in the nation. Now, to be fair to everybody, I've already probably mentioned these some point along the way. And I'm not saying either these new methods are something that doesn't need the beat me. I do have to do a little bit more research. Before I talk specifically about the book. You know, both of them seem like principles and methods that I've sort of adopted that do. And like I said, Maybe I've heard of them. Maybe somebody mentioned long away, maybe I did, but I just and I know Dr. Doble who's a neuroscientist that also wrote a book. He also had a stroke. He's doesn't endorse these, but kind of a fan of them. You know, that's reaffirmed by this book. But I feel like again, I love my team. My team is eyes team. I mean, I have I eyes my stroke, every team is my rider die. I feel like if I can't work with my therapist, physical therapist or physical therapist, I don't want to go to therapy that if they're off it just it astounds me that I just have finding things out well into year three. Again, I don't blame my therapist team because they're just gonna be exercise. We're working on stuff. We're doing the day to day we're trying to improve. You know. But again, back to the keeping of information, even the world's broke organization, I don't want to I don't want to I don't want to I mean, world stroke is great, right? They sort of ask for donations and they give you access some of this information. They're pretty open. To be fair. My giving a donation, I don't mind paying money for things. I just want. What when I talk about beekeeping, it's not that he was getting money for the work they've done or the research they've powered or the things they've put together. I'm not talking about that. I'm talking about like the read sentence where there are methods that are available and something floor but people won't even talk about them like that, because I'm gonna lose my fucking mind. Like, this should not be a thing that's happening in 2023. The world is very much more globalized, save in the 90s, right 30 years ago, like WordPress or something I worked in developer field for three years, democratize publishing. You know, before then, everything was like was this much harder? And I feel like information for the survivors that on it, I was just joking with a friend, a real good friend. I was like, I had to pay$500 To get access to a medical journal on broke, like, shouldn't you get one? Like, shouldn't you get a year of freeze to strip in with your stroke? Like, I mean, is that too much to ask for? Who are like, what are people doing with this information? 1000s of dollars are being exchanged for companies do this research and get the research and like, the people that really need it don't even have access, not only don't have access is free. I mean, I'm in a different position. I think some people can afford it. But like, the access is so limited, that it's not even like payment isn't even a question or an option, because people don't even know about these things. It's just, it's unbelievable to me. I know I'm going down a big rabbit hole on our soapbox right now, it just I feel like that is sort of the purpose of this is weren't a lot of resources when I first had my stroke. And honestly, like, again, this sounds a little like an S, but like, I just want the information. I just wanted to know where I can get it, I get access to it, pay for it, I'm happy to pay for anybody's time in their research. Like it's just frustrating to be a survivor and find out. The more I dig, the more I find out more I realized that I don't know, I I'm not saying this to be arrogant to think I'm having trouble finding this information. And it's good information, things that I could use tips, tricks, things that might work for me, right, because every survivor is living a different journey. And that's because every brain is different, I don't know, necessarily what I would even think I would be okay with chunks of this, or this, this, this, this, or this, I want to try one or the other ones. If finding something doesn't work. Ie that says I'm willing to do the work and put in time I just need to be able to find it. From the research needs to be spoken to by clinicians and people in the field who really are hearing these things just want to be you know, tell me what's available. I mean, I'm not even asking you to do the work. I'm asking you just share information and pass this along. And I don't think I'm alone in this you know, I think it just speaks to why there needs to be the online community off like Facebook I came across as stars on Facebook, that's great. There's nothing wrong with that, if it's working for you, great. Like these are different different levels there. There are going to be people who just kind of want based in a little bit of access there there's going to go the DIY route probably I know there's people who are going to want accountability. So there might be an expert here and there's a full hands on experience. It does amazing thing amazingly you know, find new methods and I know things are developed over time there's always gonna be new things out I believe honestly, I don't even know if the price method or Daniel method would work here something I'd enjoy but you know, like give it a shot you know, and I think again that that's one of the things that noise may be up being as drivers that there Yeah, I do think even if he had all this info on day one it be overwhelmed. But again nobody's gonna solve the health care problem in America but I just feel like even something as simple as this book that I mentioning last podcast today, here in Episode 13, is that like oh, how am I buying tons of stuff from Amazon, right? They're looking to sell me everything in any. I would read every book on have it is available to me as a barber. Every pool everything that goes on. I know, my baby. I hadn't really been showering last year. So on the big book, because I was working on other things, where, you know, but again finding out, find this book in the last couple of weeks, and then just be your three, finding it out owl. Not only is this but it's also an excellent, I wouldn't say it's like a playbook or stroke. Everybody's gotta be the most comprehensive book I've seen available. At least to kind of start if you were going to game plan, or your recovery would be a great Oh, I don't know why more people aren't talking about this book. Honestly, I'm baffled. I don't have better things to say about it other than a battle. I think the only reason I have finished this book yet is because I'm just saying I'm I'm reading and rereading that, like, in that in the same chapter, you know, this is not going to be a podcast about this book, every week, but I just finding stuff out, I want to bring it today. And I wanted to remind you to go pick up this book and give it a read if you're feeling like at last, but like this looking for some more things. I I just love kind of collaborative approach. As my, as far as domain about the game. Again, I think people that are making content, whether it's podcasts, whether it's YouTube, whether you're you're selling horses, like you know, everybody's gonna take, and I do believe there are different things that work for different people, I feel like the best way for people to make informed decision of any kind is to have the information and then make a choice. Personally, choice doesn't align with you. Or the thing does work for you go on to like that common sense. And I feel like in the end, it works out for everybody's best work for the betterment of everyone. For me, to make informed choice. You know, and I know, we're already going long in this this not directly I do the Feldenkrais or not. But in that same chapter, they talk about the brunt in front from abroad aren't getting tired. You know, and this is a big thing in therapy too. Is that something therapists? You know, it's okay, I don't mind that people have different approaches, I just feel like as a survivor, I want to, again, know, my options, I want to know. You know, I think therapists and clinicians, they have everybody safety, they always have a mind about arguing. I think these obviously, number one goes without saying that the approach may vary from person to person, and it may be different. Because everybody's, not only is different, but everybody is living a different life. Not every driver is under the age of 40. Not a restrictive hour is, you know, a parent will be younger children. So, I think and part of the Brunnstrom approach is really like, what what that is, is, is like compound movements, they regain stability versus constraining. movement to regain stability. So it's kind of like if you're right, that affected really focusing on the right hand and using the right hand only. I feel like walking really everyday life is more of a compound movement. I understand both approaches. I feel like I don't think there's the same as those earlier. I think this is just sometimes comes down to facilities personal preference, comes down to therapist preferences. I'm not sure I really feel one versus the other is that I feel like mixing both is honestly ideal, because I feel like you need to have that. You know, you don't need anything but if you're somebody who has children and is living a little bit more of an active lifestyle, you might be these things. My only caution there is that, you know sometimes and I think I've learned this firsthand is that when you I overcompensate too long. You kind of end develop bad habits. And I don't know. I you know, I can see both sides here. I think sometimes I like with typing. I'll go back to that example. Keyboard death now. Would I rather go back to ASDF? Home row deal? And just, you know, in hindsight, yeah, I think of I practice typing a minute day. For the last three years, I think I'd be further along. But I didn't know that when I started. Sometimes you think things are going to work out? Honestly, sometimes things just aren't working out, like you thought I thought that lets me do like handwriting was a big thing that I was worried about. barely getting back to initially, there were other bigger things that were on the forefront of my mind. And then as bigger of path for bilities are regained, I've started refining. You can always use them yet. You have to be willing to also be okay with those made along the way. So I think that's important. You know, obviously hindsight, yeah, I spent a minute doing the top tasks every day for years. I might be further along, but who knows, I'm certainly not a big deal. It's something to keep in mind and consider when you're evaluating yourself, or if you're there, caregiver caretaker. Or you're just a family member, you know, I think this evaluation really important. Because, you know, sometimes you have to also weigh in other things like I do believe in the use it or lose it. But again, hard to know where to start, because something is really impossible in the beginning. Like in the very beginning, I couldn't open my right hand at all, there was really no point trying to use it because it wasn't doing anything. You know, and that change over time. So usually the loser thing, but I also think this, again, goes back to awareness and sort of reassessing on a regular basis and not letting time go by without retesting yourself as being a you know, is this better? Am I walking better? up perfect? is better? No, my, my right hand, okay, well, maybe it is. Right. And the other thing I hate the phrase fake it till you make it but I think sometimes when it comes broken forever, I think it's important because to get to that mindset of learning, you can do things big visualization, dive into the woowoo stuff, but I do think there is validity and visualization of certain things I do a lot with a lot of air things to get in sometimes like I grabbed a little basketball boy without an actual basketball. Handwriting is something I'm still working on typing. I'll be running the neighborhood I'll be like, moving my fingers like I look like a lunatic but I don't really care. You know, just getting those movements, those little things in places sometimes. You know, in I don't know, I don't know for everybody it just is sometimes the actual keyboard can be intimidating. But it's the movement in the air on Burning Glass. The neighborhood feels a little more free. I don't know if working 100% But I do think my typing is approved. And maybe it's just that you know, typing is something that is going to get I don't really know maybe I was ready to personally yours. I do think I rely on it too much sometimes. And again, that goes back to like not so much the use it or lose it but it's just like constantly assessing. You know, and you have to weigh the pros and cons like you know, your past that you feel is worth getting over The hump. And if you please take a minute now to oh, you know, you can make some concessions there. Two minutes. They first, like a month now, then it's only a minute. Yeah. But if you're doing typing in like, well, I want to practice by typing. It takes me five minutes today or, you know, take 10 minutes now but next month is only five. Well that's some improvement reassessing on later but Emin now is still taking eminent month as the leisure board, but I'd be something you just maybe it doesn't dust on your list of where you want to go. You know, but I do think this is really important topic. I love more because I think, again, this surprised me your three be finding out these things that are you can't keep up with everything. And I think we can do why community important because collaboration, there's electives, there are four classes like that is why survivor science community is so important to me get going here. Because this like reasoning doesn't they always say it takes a village and it really takes the goddamn team that are and I think that is no different in stroke. And I think the more we can share and collaborate amongst other whether you're a survivor, caretaker, somebody who works in the field, I feel like, you know, there's the opportunity for a lot of crossover and I feel like collaborative process. Everybody plays an important role. And the faster we can get information to survivors, and feedback from survivors, to clinicians to researchers, I feel like right now, it's in a weird silo. Both guys broke, they talked about, everybody's in the silo at the everybody getting out of these silos and starting the collaboration. Because I feel like, you know, sounds corny, but together we go further. I mean, I've really feel like that's true. Be like, found out, you're doing the most I can, I'm still finding it a struggle that other people must be. And I can't imagine that I'm alone. So anyways, I hope you found this episode useful. I hope, at least the more discussion I know, I'm very keen to pick out the Feldenkrais Method and Daniel method would love to hear if you've checked them out if you had any experience with them. And again, if you are a fan of the podcast, and you like what you're hearing, I would really appreciate if you do, leave a review and go to the website, and leave a review right there. And it goes to Apple and Spotify. And if you aren't signed up for the newsletter, the server science newsletter is available on the podcast, mobile prior.com. Over on the right hand side, there's gonna be a link in the main menu as well get signed up for that, hopefully starting here, and next week I see in May we start making that a regular thing. I don't know if it'll be weekly or bi weekly. Always confused by that some people go bi weekly, bi weekly, really be the press business to be sharing some of this information that we talked about here and some other things and things that we talked about next week, hopefully in Episode 14, bringing the new segment where we start talking about something fun, does that No, they just get a little heavy and I want to get back to the fun. So again, really appreciate it. Hope you're having a great week.