8. Navigating the Wild Ride of Stroke Recovery and Brain Injury

Schmierer welcome back to another, another episode of Survivor podcast. In today's episode, we are going to be talking about the emotional roller coaster ride that is a stroke or brain injury. And how to make that ride a little bit smoother. I think it goes without saying nobody is anticipating having a stroke, or any sort of stroke, significant brain injury, it's going to be happening, suddenly, it's going to be shocking. It's going to be a lot for both. For everybody involved, it's going to be involved, you know, it's going to be a shock to you, to your body, to your system, to your loved ones, to your family, to your caretakers, it's, it's going to be a wild ride. I say this every episode, if it's anything short of a wild ride, you are definitely lucky. And I you know, I wish I could say it would be easy, but I just don't think that's the case. However, we're gonna go through the different phases of this rollercoaster ride. The reason I call it a roller coaster is not to just not really to be funny because it is there are really there are lots of motions that will come over a period of time there's going to be ups and downs, there's going to be peaks and valleys, there's going to be setbacks, there's going to be issues along the way. Again, not to be beat a dead horse here, but it is not a linear thing. It's just it's not. And to sugarcoat it and say, you know, if you do XY and Z, you'll be good. Again, I wish I could say that, definitively, I think there are things you can do to really help. I don't know if speed up is the right word, I don't think there is anything you can do to speed up things. Because, again, age plays a factor but is is not a clear factor in that recovery process. You know, the goals we talked about last time goals depends on the goals, it depends on what what significant changes you want to make on your journey, what significant changes you may have to make on your journey. And again, that's going to unfortunately, look different for everybody. I would say it feels wrong, trust your gut. I'm going to talk about some things that I think are things that I just didn't become aware of until later. And I don't know that people. Honestly, there was nobody. I don't think at any point, anybody I was working with, avoided telling me things, it just I don't know if it occurred to me or didn't occur to them. combination, I think there's a lot of things that we often overlook. And I'll go through some of those things. You know, but I think really, as as with every episode, we're going to start here at the beginning, before it happened to things that just remind everybody that's a listener, if you're interested in finding out more about survivor science and the community that I'm building, I definitely encourage you to go over to VIP dot survivor science.com. The, you know, I think the people that sign up early on, there'll be some significant discounts to join the membership community. You know, I'm going to be looking for beta testers in the first couple weeks, hopefully coming up here at the end of March beginning of April. So definitely sign up if you're interested in finding out more. potentially being an early adopter, an early member muvizu. Get on the list for when we go live to the public. You know, if you're into discounts and kicking tires around I would definitely encourage you to sign up. Feel free to send me a direct message if you have suggestions, tips, questions, anything. Whether that's on Twitter, you can email the podcast everything is in the show notes So that kind of leaves that there. And again, that's VIP dot survivor science.com. I am working diligently to sort of merge some of these brands, where survivor science is the community that I'm building this show is called the lovable survivor. It's possible I merge the two, it's possible, I might rename this podcast After these first couple of episodes, so we'll see where it goes. Or I may just leave it to me may have, I may have this show. And then I'll have sort of a second show of interviews later on under the survivor science brand, because that is, the reason I'm separating them is because currently, I'm doing this podcast on my own. Sharing my journey, my the things that I found helpful and you know, things that others could find helpful, but maybe the community at large is part of Survivor science. So you know, just bear with me while I work through those things, I'm just trying to be honest and clear. And you know, the two brands are very similar. They're pink and black. So I don't think there's a ton of confusion, but it is not as clear as one major umbrella. So right now it's survivor science is a community that will be built out local sir IRA is the actual podcast currently that you're listening to the YouTube channel, which is probably coming here in a couple of weeks. I just want to get, you know, more things filmed. And banked before I really release that to everybody. I think it'd be a nice complement to this podcast. And I'm a podcast as well to that YouTube channel. Because Youtube is clearly heading in the direction of podcasting as well. So yeah, lots of things going on. But back to this episode, I think, like I said, the big takeaway here is that it is going to be quite a ride, there are going to be lots of ups and downs. If you've ever been on a roller coaster, this is exactly what it's going to feel like if you're in the middle of this, if you're near the end of it, you know that this is a wild ride. It is not easy. You know, there are tons of stroke survivors. But there are unfortunately not a ton of resources. Out there, there are resources, but the hard to find. You know, it's nice to hear other people's stories. It's great to hear other people's stories. Um, you know, that's where I really want to take this podcast is being able to not only share my story, and my journey, but share other people's journeys, because I think there are obviously lots of ways to navigate a stroke and stroke, every process, I am in a unique position that I'm a stroke survivor with Ms. I also happen to be 40 Which for all intents and purposes is pretty rare for a stroke survivor. As I've said before, average stroke survivors around 65 years old, are certainly younger stroke survivors than myself, there are older stroke survivors and myself, not everybody wants to get to the same results at the end, whatever that looks like. You know, my main focus is from people that are sort of stable and well and able to get back to a life that maybe they were at before. Maybe it's slightly different. Maybe it's totally different, but it is one that they want to be fulfilling and enjoyable. And yes, there may always be some deficits and some obstacles and some things to work around. But ultimately you want to live you know, a healthy enjoyable life and I think like I said I'm going to share some of those things today. So I think we all know when you have the and if you are new to being a stroke survivor it's okay know this from day one. I mean, people are going to say this, you're going to roll your eyes I'm rolling my eyes I'm off camera as I'm saying it. It's different for everybody. It's overwhelming initially there is a lot of shock. There is some fear lot of information coming downhill. Um, all of it probably did. It also be completely overwhelmed. I will just stay try to try your best to take it in stride. You don't have to take all the information down. People will help support people will remind you people will constantly remind you where they want to be right or not. Your body will remind yourself, but there are, I would say it starts with a valley. You know, one of the things they put me on early on was a an antidepressant. And that's because I had a stroke at 37, I have three kids, I have a wife, it was a lot. And I will say, I am grateful that they did, because I don't know that I would want to meet the version of myself that had just had a stroke. If I was not on antidepressants. Again, it's a lot of shock. It's anxiety. It's fear of the unknown. You don't know exactly what's going to happen. But you know, everything has happened very suddenly, where you are totally fine. And then you're totally not. So, you know, I think you need to talk to your doctors and your team, but certainly don't dismiss that as as a way to help you in the beginning. And again, there might be physical and cognitive changes, somebody might recognize right away, some you may not be aware of, there's also going to be, you know, I did not have terrible speech at the beginning. It wasn't until later on being diagnosed with MS that that's when the speech took hit. So you know, it gets pretty dark, pretty early. And again, every stroke is different, you're going to have different issues than I had, you may have similar issues, you may snap back pretty quickly. You may. You may not. And I think the sooner you realize there's no magic pill. It is a little weird to wrap your head around that one day, you're fine. And then the next day, totally not. I mean, that in every sense. Like I walked into the hospital two days later, I couldn't walk at all. And you think, Okay, well, I just can't walk right now. And then you realize, months down the road, how long it takes to actually physically walk again. So, you know, once you realize you're gonna have to relearn some some things that you already obviously I've been working on for a significant portion of your life, depending on how old you are. You're gonna need some support, whether that's from professionals, or just motional support family and friends and spouses. I'm in the early days, and I think everybody tries to keep a positive outlook, but just know, it's, it's not so easy. And tell this is hard. It's really emotional. It did take soul. It does. You know, I think, for me, it was I appreciated that I was so alive. And I really kind of clung to that pretty quickly. I knew it was going to be long, I knew he wasn't going to be easy, but I just kept thinking, Alright, I'm alive. That's amazing. This is clearly going to take more time than I'd like it to I am known as a fixer. I like to fix problems pretty quickly. And it was very clear to me very early on that this would be a much longer haul. So I think that initial valley there are you know, you can go over things in your head, I recommend trying to get out of your head as soon as possible. I don't know there's a ton of benefits there. Of course. Again, this is also some of the things that we're going to touch on. Throughout this episode. There are things that you can change pretty quickly, once you've had the stroke. I mean, depending on your facility, obviously with this emotional roller coaster, you're in a valley, your health care team is trying to get you stable. There are things you can work on very early on, Get Proper Sleep, sleep as much as you can. It's good for your brain you know, take note that I think reading helped quite a bit. I had trouble holding books so I got into audible which I know may not be for everybody but I think these things when you can listen to things if you can like keep your brain going and moving that's that's a lot more positive than it may initially seem. Your diet will probably be dictated by your medical facility. I think you know you can complain all you want i I believe they will do their very best to feed you properly and get you on the right track. Another thing that I will recommend, early on in this in this initial phase when you're when, when you're kind of figuring out what to do and you may not be able to exercise can you may be wheelchair bound initially. Do not underestimate the power of both sleep and diet, but also breathing. And when it comes to breathing, I'm going to say nasal breathing specifically. I'm a big Patrick McGowan fan. In fact, I should probably reach out to him and talk to him at some point about sponsoring this podcast. But I feel like oxygen advantage.com is Patrick McGowan's brand, he offers a lot of courses on there. He also authored a certification, which I'm still in the process of finalizing. But it's something for me that I was unaware of how beneficial it could be. In terms of blood flow, in terms of just overall health and wellness. There is a lot of power in breathing. Especially nasal breathing. And I know this sounds basic to some people, but I was a pretty habitual mouth breather for most of my life. And that actually takes us pretty significant toll on your body, believe it or not. And so if you do find yourself wheelchair bound, you've got a little lecture time I obviously diet will be controlled probably by your medical facility sleep. You know, I think they encourage you to sleep, but also stay active and part of staying active is walking. But if you can't walk, how do you stay active? My recommendation again, is to look into nasal breathing. There are lots of exercises that you can practice, I think the eye opener for me was realizing you could unblock your nose. So that if you suffer from rhinitis or stuffy nose, or just have trouble in general breathing through your nose, just know that with a little bit of practice and some videos and the right you know a little bit of effort, you can really change your life. And I will tell you, I can't give you a better sort of testimonial to the power of nasal breathing than the last six months, I am a six foot eight 325 pound stroke survivor living with MS who has finally fixed his breathing from mouth breathing to nasal breathing. And I would say for the last 160 days, give or take, I have been running 10 miles a day. Now I'm not running 10 of the fastest miles on the planet. I am definitely not Usain Bolt, I am a slow runner. But I am a runner. And again, I remind you, I'm six foot eight, which is two meters. If you're overseas 325 pounds, which is a lot of frequent kilograms, I'm gonna guess roughly 155 kilograms, give or take, I don't really know. And I don't feel like doing the math or googling during the show here, but it's a lot of kilograms. So it's a lot of height, it is very unusual. I would say I am not on the looks of it. A typical body type for a runner of any kind, certainly not 10 miles a day. So I don't want you to underestimate the power of nasal breathing and just breathing in general, it doesn't necessarily have to be nasal breathing, I bet it is ideal down the road. But you can fix your breathing by doing various exercises. So I got a little off track because it got a little passionate about breathing. But I think if you are on that roller coaster and you're in a valley in the early days, just know that this is something you can do, especially if you cannot actively Walk With Ease. And this is certainly something you could do while sitting down or even laying down. As a lot of the exercises. Honestly have you sit down or lay down so that that is something to look into and again, oxygen advantage. Patrick McGowan. He's written a couple books, breathing pure oxygen advantage, both great books, atomic focus. Definitely check them out. I think there are great resources and again, I wish it just had tripped upon them sooner, because it's definitely something you could do early on. Now, one You are sort of stabilize. And you're ready to get out of the valley and you're working with therapists, physical therapists, occupational therapists, speech therapists, you're going to be on a high, there are going to be progress points. Some of it will be quick, some of it will not be easy. Some of it will be a pain in the ass. I think that goes without saying if you are in therapies or been in therapies, you know, I think it differs for everybody. I've had great success in therapy, I continue to go and year three plus here. currently seeing a physical therapists and occupational therapists, and my third year, I again, I've said this before, I take advantage of every opportunity to get additional support at age 40, that I can get each year beyond what I can do for myself. That may not be for everybody. But if I'm paying for health insurance, I am going to use that health insurance and I'm going to use it for the things that they need. And when I'm running, I want to be an even better runner. So why not? Yeah, that being said, you know, I think you're gonna experience like I said, some highs, you're gonna get some wins, it's gonna ebb and flow, it's not linear. You're gonna make progress in areas where you want to make progress, you're gonna make very little progress. Sometimes in areas you want to make progress. It's just a constant assessing of where you're at, where you want to improve. Talking to your team, talk to your family, talking to your caretakers is where you're gonna learn a lot of grit and resilience. To learn a lot about yourself, you know, you kind of get two choices, you can give up or you can keep going. For me, just keep going. Easier said than done. Realize that, again, this emotional roller coaster, it's like two steps forward one day, sometimes two steps forward, 37 back. You know, and it can be frustrating. I think it's very important to communicate constantly with your therapists and your doctors, because you want to make sure that when you're doing the work, you're not over doing it, which I've been known to do at times, I think you need to really understand your body. And, again, think of the winds at you take the winds as they come realize you'll have setbacks with those physical improvements. I think the same is true of cognitive and speech improvements, you're going to improve, but it's going to be like, forward and back and forward and back. It's okay. You know, they say it takes time and they're not wrong, it takes time, it's painfully slow sometimes. So there are peaks, nor valleys. And that's just kind of natural the first couple of years. For me, the big one is when you sort of get to, I think I think I the first two years it was peaks and valleys. You know, first year obviously more valleys second year, more peaks. But so a mix of both. wasn't really until last year where I got to sort of these plateaus that I guess I wasn't expecting, because it had been such an upward trajectory. It you know, I was still experiencing peaks and valleys, but the plateaus caught a little off guard. And that's when I started getting into peloton and running and looking into breathing. And that just kind of unlocked new doors. And that's really not to tie this into what I'm doing with survivor science, but it is kind of very much that I think, get to a point in your recovery journey where you're stable and healthy. But depending on your age and your situation, you may want more that more isn't always clear to the survivor or to or to the people around the survivor, honestly to help I think that's part of why there's a need for a larger communities. I think there are lots of professionals that want to help but they don't often know as much. Really, because they're not actually survivors. They see a lot of survivors but it gets to a point where they've helped the survivor as almost as much as they can. And then you know, sometimes they have support groups and these pro Boom, sometimes they don't. And yeah, I mean, you got to watch out for that, and they don't know where you want to go. So that's part of the reason for going back to therapy is I pay for health insurance, I might as well take advantage of it. And also, you know, there's nothing wrong with a plateau. But eventually you want to, I don't even know that you want to get off the plateau, but you want to go further forward. But in a safe way, because you don't want to cause secondary issues, though, there's that and I think, you know, sometimes with that plateau, there can be an emotional setback, because you're like, Well, I'm good. But am I really good enough? Like, why can't I get there that these are questions that I don't know that I'll ever be able to call myself unstoppable, but I, you know, I don't think I'm alone in wanting to just striving to keep getting better, and what I mean, by better for me, at least, and again, this is gonna vary from person to person, but I know that my life will never go back to exactly the way it was. But I would love to continue to make strides and effort and powerful progress in a way where things that are still taking a little bit more effort, then I recall them taking or know that they should be should hate that word. You know, I think when I think about walking, it still takes a little effort. Nothing wrong with that. I'm not mad about it. But I wouldn't mind if cognitively, mentally, and even physically, just a little bit better. may never happen. But I'm corny as it sounds, as long as I'm breathing, I'd like to keep trying, I am not giving up hope. And maybe it'll get to a point where maybe it's no longer that necessary. Maybe I just have to think about walking a little bit more. But I think there's always room for improvement. And I think I don't think this is specific. This might be in general in life. I don't think there it's too much different per strokes of our other than your strokes of ours. So there's a little bit more mental over it, I think, and, and just being a non stroke survivor, if we if that makes sense. It is like a general you're gonna have peaks and valleys and plateaus. obstacles to overcome and or navigate around. And I think it's just different for a stroke survivor or brain injury survivor or auto immune, you know, individuals like myself, you know, MS is autoimmune technically. So, yeah. I know, it's so cliched so not helpful in the sense that, you know, every stroke survivors journey is unique and the progress is boring and as dry as sounds, maybe it sounds better coming from a fellow survivor. And a been a medical professional, but it is honestly not linear because if it was, I assure you, I and a lot of other stroke survivors would have figured out plan and given you all the exact plan that works to follow if such thing could be accomplished. However, again, going back to sort of the reason for doing this podcast and the reason for can be creating Serato science community is going to be people coming together to help other individuals who are going through a similar experience share those experiences to help navigate the peaks and valleys and all the emotional parts that go along with being a survivor in this sense, because I do believe it's a unique it's a unique position to be in and to go through and although you can communicate what this is like to other people and for unfortunately, you know, I honestly, I don't want people to know what this is like, because that means they're gonna have to suffer a stroke. But the end goal goal really is to not just help stroke survivors, but maybe even, you know, when I think about 30 years down the road, is there going to be a pill or some way to even reverse some of the negative effects of a stroke. And Alison has come a long way in the last 30 years, and there's no reason to believe. That couldn't continue. Obviously, brain and brain injuries are very complex. They're very individualized. Because it because every body, and every person is unique, their physical makeup, there are hundreds of reasons. One individual may have a stroke versus another. So that's why this is not so linear, that there are a lot of pieces of the puzzle. But again, you know, this is going to be I think, I think wrapping up, it is going to be a rollercoaster ride, if you've listened this far, you know, it's going to be a roller coaster ride. You know, I think my best advice really, honestly, is buckle up. Stick with it. It's hard, a painful, it can be frustrating as hell to be. You're going to experience the widest range of emotions you probably have ever experienced in your life. But just know that. For most people, there is light at the end of the tunnel. I don't want to say that with a definitive yes or no. But I do believe that medicine and therapies have come a long way. Even in the last couple of years, since my stroke, which was only 2019 2023. Just keep showing up and putting in the work just like anything else in life. You know, you may not get the exact results you're after, but I think waking up taking care of your body, getting proper rest, proper sleep, doing all the little things now will pay dividends in the long run. And that's not to just see corny. That is I can tell you. That is true. I it's hard to see sometimes it's frustrating, but I feel like you can definitely see the results. And you put in the work. You know, you take those tough days you learn from them, see how you can improve. And again, I think this is not just brain injuries, or stroke, or any of those things. I think this is life in general. Learn from, you know, mistakes you make, learn from us every opportunity to learn and make improvements, obviously, with the guidance of healthcare professionals do things wisely and safely. But yeah, I think if you show up, you put in the work, you know, it takes some time, but you'll get there. Just know that from a stroke survivor to other stroke survivors. I'm rooting for you. I hope he can do it. I know you can do it, if he keeps showing up if you need help if you need guidance, if you need anything at all you have questions. You know, feel free to email the podcast, I would love to answer questions, see how I can help support. And yeah, I think that we'll wrap it up there. And again, if you can, you know, if you're a fan of this show, if you've enjoyed the show, if you found these episodes helpful, please leave you know either comment, or review. on Apple podcasts, Spotify. Good pods is something that I think is really going to start to take off and a big way. or really any any one of your whatever, however you consume this, whatever platform you like the best. You know, I'm going to try to see what I can do as far as reaching out, you know, reach out to me if you do come in, or do leave a review on the podcast look, see how I can help out in some way, shape or form. And thank you for the review. So yeah, if you do leave a review, please reach out on Twitter or LinkedIn. Happy to see how it can help. But yeah, we'll leave it there for today. So thanks so much.