46. Spasticity Management: Essential Tips for Stroke Survivors

WEBVTT

00:00:02.560 --> 00:01:42.355
Real quick before we hop into this week's episode of the Love, Love, Love, Love, Love, Love, Love, Love, Love, Love, Love. I just want to touch on a few things. So I am sorry. I apologize. I've been away finishing the 1st term of my master's program in psychology, so things have been busy. Hopefully, everything is getting I am happy about this episode. I'm excited about this episode. Specificity is one of the big questions that comes up pretty much second to how long does it take to recover from a stroke. Spasticity for me is something that kinda comes and goes. It happens in waves. If I'm see, I don't often notice it. I know that sounds weird, but I think it's it's really something for me that, you know, I try to manage. I've been on Baclofen for a couple of years. I continue to take it. It definitely helps. Exercise has definitely helped for me over the last couple of year. Diet, of course, is a big one as always with stroke recovery. The diet depends on what which diet works best for you, and it may not solve the spasticity problem. Luckily for me, I don't deal with a lot pain as a result of spasticity. It's just annoying things, my hands and legs sometimes, particularly my a little gummy. So, you know, all the things from physical therapy that I've tried over the years, they work. Sometimes, it's annoying because you have to bring them back out. Like, recently, I've been starting to work with Putty again in particular with my right hand. No major problems. Just, again, it's something that me, it's it's sporadic.

00:01:43.775 --> 00:01:47.540
It's manageable. It's not not annoying. That's always a thing.

00:01:47.540 --> 00:03:17.824
I think everything with stroke is always annoying, if I'm being honest, at least in my opinion. But, yeah, diet and exercise are big ones. They seem to help keep things at bay. I have tried Botox, had mixed results with my leg and my my hand. But, yeah, just kind of working through things constantly, you know, again, like I said, diets, supplements, baclofen. Tried the Botox thing. Some people have better results. You know, I think it works differently for everybody. Like, we always different. Every recovery process is different. You know, there's some alternative therapies. I've tried, some other things. I find meditation to be a big help in the spasticity region, at least when I am really getting anxious and things flare up. But, anyways, spasticity, there are many different things, things that work for some, things that don't work for others. So hope you get something from this, episode of the podcast and really excited about it again. And, yeah, we'll talk soon. But coming up, episode 46 of the Lovell Survivor Podcast starting My name is Will Snow. Welcome back to another episode of Will's Horror podcast.

00:03:18.305 --> 00:03:25.878
This week is episode 40 and I am talking about spasticity. Sorry. Sorry. It's been a few weeks.

00:03:25.878 --> 00:03:29.580
I've been behind schedule finishing up this term at school.

00:03:30.280 --> 00:03:36.685
Going into the next term, we get a week off. So I'm excited to have the week off. I've been doing a lot of new things.

00:03:37.784 --> 00:03:59.870
We'll talk all about it in today's podcast. In today's episode, again, we're talking about spasticity and what it is, how it affects different people differently, exercise, diet, and beyond, how all those things play a factor in spasticity. It is fairly common amongst stroke survivors.

00:04:02.009 --> 00:06:29.449
Or sufferers is probably the wrong word, but I still deal with spasticity quite often. It's, it is annoying. It's not what I would like to deal with. But, you know, as a stroke survivor, we all have different things that we deal with in our recovery, whether it be physical, mental, or emotional. It's just one of the many pieces of the really irritating and, you know, the things that we go through as strokes of ours. So, you know, welcome back to another episode. Like I said, previous episode, we had talked about how I had just crossed 10,000 miles of running in 21 months. Part of that has probably played a little bit of a factor. I thought after I crossed 10,000 miles, I thought I would take a little bit of a break, and I have not. It has been, business as usual. I continue to close to 20 miles a day, and it is frustrating and, not frustrating. It's I can't figure out why I can't stop running. I'm literally like Forrest Gump. I'm trying to take it easy. I took it easy one day this week, but as fast as I think part of the reason I keep running is because it really does help me feel better. I do think I could benefit from taking a little bit of a step back and doing it probably half the mileage, you know, even less, to be honest. But I kind of I was thinking about this running, but I do like the feeling that running has provided me over the last couple of years since I started. And, again, I started running as a joke because I thought it would be funny to be 6 foot 8, £300 stroke survivor with MS and a runner. And, as funny as that is, it's it's become a part of my life. I really enjoy it. I get the benefits of it. For me, as a stroke survivor, dealing with spasticity or really dealing with anything as a stroke survivor, running has, provided a lot of great benefits. It's it's really it helps me get going in the mornings, so I like to do one morning, midday, depending on the day, depending on what's going on. Then, like, do one in the afternoon, to kinda wind down for the day.

00:06:30.694 --> 00:07:55.175
You know, when that's probably a lot, and I know it's a lot. But I I enjoy it, and I enjoy the benefits of it. So that's why I continue to do it. But for me, scaling back a little bit would actually be more helpful. Maybe this week in particular, I just feel like I'm doing more than I should. Because, again, this is a week off between terms, for my master's program in psychology. So there's that. So it could just be this week. It also could be there's some new things. To spasticity, one thing that's been very unhelpful that I started doing is wearing an 80 pound weight vest to, run and walk, and I like that. It's enjoyable. I like the edit. I you know, it's it's silly and it's it's helpful, but it's it really is unnecessary. As the stroke scorer, nobody needs to be wearing a £80 vest, But as you can see, I just came out with the treadmill. I'm sweating to death if you're watching this podcast. I like the extra benefits I get from it. It helps you know, it makes running and walking, running or walking or combination of both is helpful, but, I'm sore. Definitely this week because I started doing it last weekend and maybe last Friday, about a week ago, started doing it.

00:07:57.394 --> 00:08:06.970
And it helps, but it also it makes me, like when you go to the gym for the first time in a really long time, your entire body feels like it's gonna break.

00:08:08.033 --> 00:08:50.039
You know, if you ever been in the gym or pre stroke, post stroke, either either way, and you don't do legs or you don't do any body part for a long time, and then you go back and you try to do it the same way you were doing it before and but it you know, you get overly sore. Your muscles are overly exerted. They're they're overtired, and, the weight vest certainly does that to me. In fact, I wanted to record early in the week, but it, it kicked my butt, to be frank. Yeah. I I couldn't remove because it was it was annoying. And I did it to myself, which, again, is part of stroke recovery. You live and you learn. It's part of life. But, yeah.

00:08:51.379 --> 00:08:58.975
Super unhelpful in that regards, but, doing it a little bit less and incrementally adding weight to it.

00:08:58.975 --> 00:09:09.379
So think but you can actually add weight to it, and you could also take weight out of it. So I think doing that going forward would probably be the better approach.

00:09:11.703 --> 00:09:22.090
But, yeah, that's what's been going on this week. I actually didn't feel well this previous, this past Tuesday out of the blue. Thankfully, not yeah.

00:09:22.090 --> 00:09:48.634
You know, as a stroke star, I think we all know trying to be consistent is one thing. Being consistent is another. No matter how hard you try, sometimes your body just doesn't show up for you. And that's frankly that's, you know, around episode 46 this year has been a little bit different last year. I was doing a podcast every week last sporadic, and I really like I said last episode, I've got the systems in place. But I gotta be honest, I've lost a little bit of my mojo.

00:09:49.575 --> 00:09:52.919
I don't know if it's, enthusiasm is really probably the better word there.

00:09:53.879 --> 00:09:57.320
You know, I wanna do this to help survivors. I wanna help support other survivors.

00:09:57.320 --> 00:10:00.220
I wanna have conversations with survivors, survivor science.

00:10:00.953 --> 00:10:32.500
Join the center. You can join the blog if you just wanna get updates there on different tips and tricks and things I'm writing out. Every now and then, you can join the center and be a part of a community online. As I talked last episode, isolation is a big thing with survivors. I talked to a survivor today in the UK, and, you know, he said community is needed. It'd be nice to be, you know, hopping on Zoom with various survivors is great. Hearing about what other survivors are doing, their journey, podcasts too.

00:10:33.085 --> 00:10:43.429
It's all great stuff, but sometimes you just have a question, you know, or you wanna ask. I don't know if you participated in Facebook with them. They they I think they mean well.

00:10:43.429 --> 00:11:08.304
They wanna be helpful. They can be helpful, but I think sometimes the conversation gets widely deviated from the original intent of the person asking the question. You see all sorts of things where people are slinging different products or doing different things, and it's, it becomes unhelpful, I think, at some point. So that's the benefit of really having this online community with survivor science in the center.

00:11:09.245 --> 00:11:20.100
Again, the center is the community portion of the survivor science. There's survivor science at the blog. There's the center, which is a a community. It's it's all part of the survivor science brand.

00:11:21.014 --> 00:11:36.115
Separate things you can go on. Survivorscience.com now, and you can see there's a special tab for the center. If you wanna join, feel free to kick click the link. Right now, it's free, until we get to a certain number. I'm gonna keep it open till till we hit a certain mark.

00:11:37.794 --> 00:12:30.995
I'm I'm able to develop the community even fur build it out in a way that is you know, I think it's beneficial now for people, but getting feedback from other survivors on what what are the things that you wanna listen to, what are the things you wanna hear about, what are the topics you want more information on, You're kinda building it out in a way that really makes sense right now. I built that out in a way that makes sense to me, but what makes sense to you and vice versa? The good news is, with Survivor of Science, you know, I'm kind of in control of that, you know, and, hopefully, along the way, I'll be able to bring on other, employees and help and things like that so it can really make it bigger and better and enjoyable is to have a good experience. Obviously, in the beginning, there's gonna be hiccups and bumps and things like, oh, well, I like this, but I didn't like this. So the onboarding was pretty good, but here's how it could be improved.

00:12:31.759 --> 00:12:56.100
You know, the goal for me is to make it a place where we're always improving, not only the community space, but our own lives as survivors. We're able to with each other because I think that's so beneficial. Again, somebody I talked to today, a fellow survivor, you know, everybody in the medical community is always wanting to be helpful. Right? And a lot of people are helpful at sometimes.

00:12:57.774 --> 00:13:01.534
I said it a 1000000 times to say every week on this survivor.

00:13:01.534 --> 00:13:05.315
Until you're really in that spot, it's hard to really understand.

00:13:06.960 --> 00:13:14.105
Caretakers, family members, friends, they try to understand, but they don't really get it.

00:13:14.105 --> 00:14:25.149
And that's not their fault. That's not a that's not a slight on the people in our lives that are really trying to help us. It's just you couldn't possibly know what's going on in somebody's head, especially survivor who's had a neurological event. Any any survivor, whether it's TBI, whether it's, MS, whether it's I know MS isn't really considered a brain injury, but I gotta be honest, brain joke. But, you know, any major medical life event is really hard for people to understand. We could try. We can empathize. We can certainly get to a certain point in a certain level, but at the end of the day, it just there's nuance that, frankly, I think, you know, and I I could this rate, I've never been in a thankfully, knock on wood, never been in a major car accident, but I can imagine people who have been in a major car accident feel very differently than people who have not been in a major car accident. I mean, I know that's a weird comparison, but I'm just trying to think of something off the top of my head here that is is is something it's hard to till you go through it. And, again, even fellow strokes survivors.

00:14:25.149 --> 00:14:45.929
Right? Everybody's stroke is a little bit different. There's certainly a lot of overlap. There are a lot of similarities between strokes. But, again, every stroke in every brain is different. So it's hard. Even from survivor to survivor, it's hard to understand because, like, for me, for I did get diagnosed with Dysarthea, which is a little different than aphasia.

00:14:47.964 --> 00:15:25.284
And, frankly, I feel lucky, to only have had some speech impairment, not total aphasia. Like, aphasia is difficult. Some people get through it, some, or don't, unfortunately. If it's just no matter how hard they try to rewire their brain or do certain things. And, again, you know, we've all talked about aphasia. We've all heard about aphasia. It's not really it doesn't affect intelligence. It affects it affects how you read or perceive or or speak, and I've seen it in person in my groups, locally.

00:15:26.065 --> 00:16:49.335
I've met other people with aphasia. It's it's, you know, I I feel lucky that I I didn't suffer significant aphasia because that is that is pretty that's tough again, I don't have it per se. I have felt, like, moments of it briefly, but I don't suffer from, like, full blown aphasia. But I can certainly see how difficult that is. I I actually think aphasia is probably closer to, like I mean, it's part of stroke, but it's kinda in a debilitating effects. It's kinda it seems more like m or, what is it, Parkinson's or some of those more muscular afflictions. But yeah. So, anyways, I'm getting a little of course, I decided to record this episode today after getting off the treadmill, after running 25 plus miles today. So I'm a little tired, but I felt like I needed to record today because it's been a little while, and I wanna get back to it. And so, let's go over sort of spasticity. We'll hop into the main topic, which is spasticity. And, so spasticity in terms of medical definition is like motor disorder.

00:16:49.940 --> 00:17:00.075
That causes muscles to become stiff or rigid. Also known as is also known as increased muscle tone or unusual tightness. What does that mean?

00:17:01.333 --> 00:17:41.819
Anything. I will say this is kinda one of the things for me that is difficult at times when people bring up spasticity. It's like, do I have it? Don't I have it? What is it? Like and I can't even tell. Is it related to stroke? Is it related to MS? Is it a combination? I think the best way to honest is, like, you know, it's it typically, I believe it happened. You know, again, I I did do research for this, but I I'm still kind of understanding it myself. So my right side was affected, and my right hand suffers from how do I know?

00:17:41.819 --> 00:17:49.294
Because I know it doesn't feel the way it used to. It works much better than year 1 of my stroke. I can open my hand now.

00:17:49.294 --> 00:18:15.140
I can close my hand. It it's, you know, it I I just feel for me, it feels sticky. And, again, if you're you're hearing this, I'm opening and closing my hand, and it just it just doesn't feel quite as and so that's part of it, and it can also happen. So I also suffer from it with ankle my ankle foot connection, appears to have it a bit, and and that's door dorsal flexion.

00:18:16.640 --> 00:18:31.990
And so I have tried a number of things, and I'll go over this, some of the different tools and some of the different you know, there's there's Baclofen. There's a lot of medications. There's different things. I do think the exercise definitely helps me.

00:18:32.130 --> 00:18:35.269
I have worked on that endlessly and tirelessly.

00:18:36.654 --> 00:18:56.785
Stretching is a big one. Bands are again, just kind of that's the overview is a a kinda general stickiness, and and and you can kinda tell where, you know, if you're affected, whether it was right side or left side or your leg or your hand or both or some kinda combination there.

00:18:57.700 --> 00:19:08.575
You know, sometimes my hand like, my left hand, the kid with the pointer and index finger and the middle finger, but the ring finger is a little a little lazy.

00:19:09.275 --> 00:19:29.089
My ring finger on my left hand is a little lazy, but that was always a little lazy. 1, because it was my left hand. And 2, I broke my pinky playing basketball in high school. And I've always kinda and pinky has always kinda been a thing, but it was never really noticeable when everything was going a 100%. It's just more noticeable to me now.

00:19:32.429 --> 00:19:42.855
You know? But, it is caused by stroke. It is not helped by my MS for me personally. So it is related to nerve pain and the neurological connections.

00:19:44.388 --> 00:19:55.194
Again, common treatments can range from different medications, different there are different surgeries or things you could try. Talk to your doctors. I did not get a whole list of them.

00:19:56.214 --> 00:20:25.765
But Botox is a popular thing. I have tried Botox. It worked with like it worked, unfortunately, less well in my hand. I I've continued to try it here and there over the years. My primary doctor that I saw for Botox, she, she wanted moving out of town last year, so I kinda stopped at that point because it just it would get better, but then it tox wore off, but then I get Botox and just never felt like it was the answer for me.

00:20:26.325 --> 00:20:28.585
I do still take Baclofen on a regular basis.

00:20:30.005 --> 00:20:36.960
Again, that's not for everybody. Some people could take it and have no side effects. It doesn't, I mean, I think I'm lucky in that regard.

00:20:37.419 --> 00:20:56.000
Being a bigger guy, it doesn't really affect me the same way smaller people. I know there is there there are different types. There's the pill. There there's, I think there's IV treatments. You can actually have a pump of some kind implanted in your body.

00:20:56.140 --> 00:21:33.309
I I have not gone that far. I haven't really I I haven't seen for me, I didn't see enough improvement with the injections with Botox to want to go further and have that kind of Baclofen and the Baclofen too. I mean, I'm sorry. The Botox is kinda separate, so baclofen could be administered orally or liquid sort of, like, drip pump kinda deal. I don't know a ton about it, unfortunately, because I did not ever go through with it, but the baclofen does seem to work. I can definitely tell when I don't take my baclofen.

00:21:35.345 --> 00:23:04.950
But, again, exercising regularly seems to help. I think it's probably a term option. But for me, as a stroke survivor, 30, now 41, trying to lessen the medications that I rely on is just something I particularly want to do. That works for some people. It doesn't work for everybody, and I'm not sure it even works for me because every time I try to reduce something or take it away But, again, diet and exercise, don't slack on those things. I know it can be terribly difficult, especially if you're less mobile or if you're older or if you're in a wheelchair, you don't wanna hear these things, but, eventually, you can work your way out of it. I believe sent I mean, they told me I would never walk again, and I wound up walking again, not really that far out from when I started. Was it a lot of work? You better you better believe it. I mean, I will say this ad nauseam, there is no cheat code for a stroke overcoming a stroke. Your deficits are your deficits. We all have deficits. It's physical, emotional, and mental. I wish I could say it was easy. I wish I had a plan that I could sell endlessly, you know, in a PDF to the world, but the truth is there are no shortcuts that I I've found yet. There are things that have helped that I continue to find in your going into year 5.

00:23:04.950 --> 00:23:57.670
I mean, at the end of this year, it'll be my 5 year stroke anniversary, which always feels weird to say, but it is, you know, a a time marker for me just to kinda see how I progress every year. I'm not a huge fan of it, but I as a benchmark, it just gives me an idea of where I've been in the past year, where I wanna try to go next. I'm always big on continuous improvement. I know that I'm younger. I know that I'm not as old. I'm not the typical age of a stroke survivor, but I think we've all learned, especially if you've listened to this podcast or you you know, they go on TikTok, you see stroke survivors who are stroke survivors from birth who I'm not even sure how it happens, but it happens. Right? Some people are are in their twenties. Some people are in their thirties. It really spans a wide range.

00:23:57.809 --> 00:24:17.559
Yes. Is the average age still 65? The most recent most recent research, You know, globally, I believe stroke is still the leading second leading cause of death and disability. Globally, I don't know if the exact stats stay here in the US. I heard it sat this week.

00:24:17.559 --> 00:24:20.140
I don't know again if this is global or national.

00:24:21.799 --> 00:25:11.440
A stroke happens once every 40 seconds. That's a lot of strokes per day. That's a lot of people that are whose lives are changing, whose family's lives are changing. I mean, there's, you know, it it means there's a lot of work to do in a lot of areas of stroke, whether it's with specifically strokes of getting better in the prevention and and sort of I know I've said this at nauseam too. Like, I wish, looking back, I had made changes that I made since my stroke. I wish I made them before my stroke because I think mine could have been avoided for a number of reasons, but I had a number of factors. I had a bunch of things. I think first, I have a bunch of different things, but there's plenty of survivors who seemingly were doing everything right, and they still end up having a stroke. I mean, hemorrhagic, ischemic, it doesn't matter.

00:25:13.894 --> 00:26:06.904
So many people have a stroke because they have a a hole in their heart, and they just didn't know. How would you know until, you know, you'd from what I know about holes in the heart is is that you kinda don't know until you find out the hard way. You know, I I'd love to see things like, there's so much technology available out there today that, you know, why not? We've got a lot of us here, at least in the states, right, we're able to go to our doctor once a year. I wish it was affordable for everybody to just get a quick scan of their heart. You know, just something simple that's decked is our like and, again, I'm not a medical doctor, so I don't know how difficult or or hard that is to determine. I'm sure the majority of people with a hole in their heart or some kinda heart defect, it often goes on. I'll take myself, for example. I had Afib prior to being admitted to the hospital where I had my stroke.

00:26:08.130 --> 00:26:50.565
I had no idea I had Afib. You know, they asked me. They're like, oh, do you feel irregular heartbeats? And I I just I was so big that I just didn't. I'm a lot better shape than I was 5 years ago at the If I didn't have a device monitoring my heart now, I wouldn't know. I don't think I'd know now. I mean, I could tell, well, obviously, with now as a runner, I could tell when I'm pushing it too hard, but I don't know that that would lead me to think even now, I wouldn't I I don't think I'd notice if I had AFib again. Thank god I have a heart planted in me to to monitor that at least for the next 6 months. We'll see what happens next year, if it comes out, if I've done enough to change my lifestyle.

00:26:51.825 --> 00:27:51.950
But a part of me as much as I want it out, a part of me kinda wants to keep it in. Like, why not have that safety precaution in place? Because I definitely don't wanna have another honestly, I've done a lot of work over the last 5 years on my body, and I'm sure a lot of us as survivors, especially if you listen to this podcast, you have done an incredible amount of work. And it may not seem like it. You may not be where you wanna be today, but I could probably say with certainty, not go back to the beginning again and start over. It's it's just it was hard the first time. I didn't want I haven't wanted to do it the last 5 years. I sure as heck don't wanna do it another go around, you know, the same thing with the MS. But, again, with spasticity specifically, so there now. So I've tried a lot of the medical things. I've tried the Botox. I've tried Baclofen. I continue to take Baclofen over the years now. Like I said, exercise is big.

00:27:54.250 --> 00:28:45.950
I do think that for me works. I don't think that works for everybody, but I I do so weight lifting, it's sort of I I would say now I'm in the fine tuning stage, if that makes any sense, but I I like everything with stroke. Right? Like, I was in a wheelchair. I wanted to start to walk. Well, you gotta get out of the wheels here to start to walk. Before you can run, you gotta start to walk. You know? So I went to cane to AFO to slowly but surely starting to walk and feel comfortable. And then I got rid of the AFO, and then I was still walking a little bit weird. And I still walk a little bit weird sometimes when I get tired, but all these things are sort of the path and, like, feeling pretty good about where I've gotten in 5 years. Like, could I be better?

00:28:45.950 --> 00:28:55.845
Sure. There are millions of things that I can do better. I know people that run triathlanes triathlons, which is crazy as my running sounds. I have no interest in running a triathlon.

00:28:57.424 --> 00:30:16.829
If you do, great. You know? There are there are lots works. I think that's a big takeaway when it comes to spasticity. And and, really, anything with stroke, it's a lot of trial and error, but you gotta sort of take those steps, work your way to the path you wanna be. You know, I do think for my hand, like, I still get frustrated that I can't draw or can't do. It is getting painfully slowly better. So it is getting better. So I am fine tuning. So a lot of the things I did in the early days, I didn't wanna do in the early days because they they they weren't they simply weren't helpful for me at that point. But we I think is helpful. So what am I talking about? When it relates to spasticity in particular, like, I was doing a lot of band work in in therapy in the early days, and I was thinking back to this. My frustration then with the bands and with a lot of the OT and PT work was that, like so I got my legs working. My hands were still uncoordinated. Like, it's sort of they were on the right track. I don't I don't wanna say they were ever on the wrong track. I just think that I was getting frustrated with certain things because I couldn't do certain things the way I was accustomed to or the way I wanted to do them.

00:30:20.755 --> 00:30:27.730
So the bands I I've reincorporated bands into my workouts. I've reincorporated more stretching, more leg workouts.

00:30:28.829 --> 00:30:34.194
You know, I'm I'm fine tuning these workouts almost as if I was a weightlifter who started getting CR. Right?

00:30:36.273 --> 00:30:46.980
Think about it in any term. Think about it in sports. Think about it in terms of have to start with basics. And I know that it's frustrating, especially if you're older.

00:30:46.980 --> 00:31:25.534
Right? Especially, frankly, anybody probably over 18 that's had a stroke is probably entirely frustrated because you kinda feel like you had this stroke whether you're 18, 20, 30, 40, 50, 60. Like, sometimes you're going all the way back to the start of life where you're in a lot of ways, and I talk about this a lot because I had young children at the time of my stroke. My boys were 45 At the time of my stroke, my daughter was 16 or 17. She had just turned 7. My boys are 4 and 5, and I still now my boys are a little bit older.

00:31:25.534 --> 00:31:36.130
They're they're getting up, you know, starting one of them is 10. So now we're getting into that next phase, and I look at their handwriting. I look at my handwriting. I'm like, mine was so much better.

00:31:36.910 --> 00:31:59.815
But now mine is actually and that could be terribly frustrating. But I remind myself, I feel lucky that cognitively, you know, there are moments I have, there are things that I forget, things I don't like about certain things. Like, my brain still moves incredibly quick, thankfully.

00:32:00.755 --> 00:32:14.700
There are moments where it doesn't move incredibly quick and that can be hard. I wouldn't say terrifying anymore. I I for me, I pass the terrifying stage. I just know sometimes I have momentary blips or I need to slow down.

00:32:15.933 --> 00:32:23.539
Again, not something I'm good at, not something that I could say is easy for but I'd know things will pass.

00:32:24.099 --> 00:32:36.795
The the handwriting, the coordination, like, that's what I'm talking about too with fine tuning in terms of the band exercises, primarily with my arms, and my legs.

00:32:36.934 --> 00:32:40.240
My my kids are now boys are getting a little old.

00:32:40.799 --> 00:33:02.309
It's a little bit older. She's in college. But the boys are taking a big interest in sports, and now I'm starting to play with them. And I'm I'm good enough, you know, good enough shape now to move around and do things, but I can't do things the way I could 5 years ago. Even when I was big and fat and on my way to having a stroke, I could probably move around disease better than I can now.

00:33:02.309 --> 00:33:20.234
But on the other hand, I'm in much better shape than now than I was 5 years ago. So it's always a give and take. But, again, revisiting some of the exercises from the early days of therapy now in year 5, they are easier. They're not less annoying.

00:33:21.755 --> 00:33:39.894
And so what am I talking about? I'm talking about for my hand, recently, this just this past week, I started breaking up Therapody putty and using that to work out my hand because my hands have been feeling a little stiff this week. Granted, I think a lot of that is my own doing from wearing the 80 pound weight vest and running and walking.

00:33:40.913 --> 00:33:58.234
And, for example, I ran of all the hours I ran last weekend, I ran, 2 hours on Saturday, 2 hours on Sunday, without the vest. And then I did both days, 2 hours of the vest on Saturday and 2 hours of the vest on Sunday.

00:33:59.174 --> 00:34:18.699
So I spend, you know, 4 to 6 hours, give or take, running and walking. Sometimes I throw in the bike every now and then now, not as much as I used to, but I will do that. And I yeah. So you can imagine wearing a £80 vest, for 2 days in a row for for, you know, 4 hours total.

00:34:21.260 --> 00:35:00.264
On my shoulders and my upper body, I I could you know, I'm moving in now, but it was hard early in the week. Anyways, revisiting the putty and and strengthening my hand, using some of the tools that I bought early on that I wasn't ready to use and bringing back in, I think, is important. I think it's something we might over Certainly, I overlooked it, so I imagine again, maybe not. Maybe maybe I'm the only one who overlooked things, but bringing those back into the fold. Like I said, using bands now, I'm a little bit more coordinated with my hands, and I feel, you know, I either am good at it or I know how to how to kinda maneuver things the way that works for me.

00:35:03.818 --> 00:35:19.894
But my big takeaway for this week when it comes to, in particular, walking and gait. So I did just cross 10,000 miles back at the end of June as talked about on the last episode, but I I I bought a new machine.

00:35:21.009 --> 00:35:39.400
Unfortunately, it wasn't on sale on Prime Day. I just happened to buy it on Prime Day. And it's a machine by Titan, and it's, it's it's specifically and this sounds crazy. It's a $200 machine. But for me, I think it's kind of unlocking this thing that I hadn't unlocked.

00:35:39.619 --> 00:35:58.050
So it it's tibia tibia dorsi flexi flex dorsi flex machine. It's a tibia strengthening machine. It's a very simple, compact, comes fully assembled for $200. Well worth the $200 to have it completely assembled and show up to my from my house.

00:35:59.710 --> 00:36:11.150
Yeah. So this machine is specifically for the tibia. So you put your feet in, and you just simply raise the it's literally reverse toe raises.

00:36:11.690 --> 00:36:18.264
So a lot of times, therapists you know, and I'm sure my therapist I'm sure I'm gonna talk to her about this. I'm sure she's gonna tell me.

00:36:18.664 --> 00:37:26.380
Well, I told her years ago to and I think this is a great moment for me and and for her. Vans are great. I have no problem with vans. I just think for somebody like me, I should have realized sooner than later. Like, for me, I feel comfort in gyms and the you know, specific machines. Like, I wish I had bought this machine four and a half years ago, if I'm being honest. I just don't think I realized at the time, You know, I was working on my legs. I was working on big muscle groups just to start walking. You know, I think maybe this machine would have been more helpful in year 2 where I started walking and doing more lifting, but, specifically, the tibia, I think, is a a part of your lower leg. It's kind of the front it works the front of your calves, if you will, and it really helps with the dorsiflexion of of your and the big takeaway for me is that that was kind of that's been my weak spot for a couple years.

00:37:26.465 --> 00:37:38.838
Part of that is because of AMS. Part of that is because of stroke. Part of that is because I had a leg wound on the right hand side of my body for about 2 years, like, two and a half years, almost 3 years before it closed completely.

00:37:40.900 --> 00:38:37.065
Years, I was getting my leg wrapped wrapped in compression by, one of my doctors, the wound care team. So there's a wound care center here in Jacksonville, Florida. So imagine this. For 3 years, I was constantly wrapping this leg in compression while wearing Under Armour compression pants or a leg sleeve or anything like that. I'm talking about real, like, heavy duty 3 m rolling it up like it was like it's tape, like, you know. Imagine imagine getting your ankle taped like a professional athlete, but imagine that happening every day for a year. So it's, like, almost a 1000 days that this thing was wrapped up. So part of that was spasticity. Part of it might have been the wrap. Part of it might have been atrophy, to be honest, because it was wrapped up so tightly for so long that was it spasticity? Was it atrophy?

00:38:37.940 --> 00:39:18.065
I was using my leg, but it you know, there's not a lot of flexibility in in a wrap. And you think about when you tape your ankles for sports or you wear an ankle brace. Like, it's there to hold your ankle in place and support it from getting further hurt. But at the same time, if you never took that brace off, you could imagine, you know, almost like does help you heal. But a cast is only supposed to be, you know, what, 6 to 8 weeks tops in general? I mean, even if you break a leg, maybe maybe maybe a little bit longer. But yeah. So so not only was it wrapped up for 3 years, it was being used, but it was really stiff.

00:39:20.864 --> 00:39:31.980
So, again, part of this is spasticity. For me, I don't know if it was spasticity as much as it was, like, atrophy. And it doesn't really matter because it it puts me in the same spot. It's been very difficult.

00:39:33.000 --> 00:40:51.650
It's been getting better. But to be a machine, I gotta be honest, $200, best $200 on anything I've spent money over the years. I was on a show last week, and I'll drop it, in the show notes. But, Jerry Wald does a show on LinkedIn, YouTube. He has a channel called let's let's talk Stroke where he does, kind of a live chain podcast every Tuesday Thursday, 10 AM EST or 11 AM EST, 10 AM CST, 11 AM EST every Tuesday Thursday, generally. And, again, it's live stream you catch on YouTube. Subscribe to the channel. Again, if you like watching it on LinkedIn or or Facebook even, a lot of places it streams too. It's a great show. He talks to survivors. He had me joy did. Hoping to have him on the podcast here, but it's, there's so many things with spasticity. As with everything with stroke, I I do believe exercise, mind, body, emotions. I do think eating, a diet that works for you, you is one of those finicky things. Like, much of stroke recovery is it's very individualized. It definitely depends on you.

00:40:52.909 --> 00:41:08.969
I do think concentrating on the diet will help, but we always talk I always talk about diet and exercise. I think I don't think those are the solve for the problems. I think they help kind of in an ancillary right way, but they all kinda come together.

00:41:10.969 --> 00:41:35.275
You know, I don't think you can go wrong with trying to eat right, and I think you can't go wrong with trying to eat eat right. Eat the way that makes you feel best, whether that's a keto diet or a Wald's diet or a DASH diet. It doesn't matter, and you don't have to have, like, a specific diet. You can try different things. You know? Really, it's it's outside the box thinking. It's you have to think about what's working for you.

00:41:35.275 --> 00:41:41.980
You do have to kind of monitor and measure it. You don't have to be insane about it. I think it's it's hard.

00:41:41.980 --> 00:41:45.760
It's it's not easy. Some people really like cake.

00:41:47.155 --> 00:41:57.679
You know, for me, I surprisingly, as big as I am, I don't really like cake. I I could I could live the rest of my life and not have sweets. I know that sounds crazy, but that's that's how I am.

00:41:57.900 --> 00:42:27.864
I I cannot live the rest of my life and not, probably a sub. You know, when I do get off keto and I cheat and get a carb in, I my carbs usually come in the form of bread, with meat on a sub in between in in the bread. It could be hard. It's it is hard. Spasticity, actually, asbestis things that is hard to say as a stroke survivor, but, also, I think it's one of the things that kinda creeps up and creeps in.

00:42:29.409 --> 00:42:39.545
And it's it's it's one of the more frustrating parts, I think, of stroke survivor. Walking is always a difficult one. You know, in this different verb, I I know.

00:42:41.525 --> 00:42:52.119
And, again, this is generally, but for those that are able to walk again or or were working towards it, it could it's terrible. It sucks. It's the worst in the beginning.

00:42:53.715 --> 00:43:04.489
But I think, you know, if you can get out of the wheelchair and they can get in a harness or or or start you can kind you start to see glimmers of hope.

00:43:05.909 --> 00:44:27.695
I think you should see glimmers of hope with spasticity too, but the the question I saw it on Facebook, actually, because I've been looking around at some of the Facebook groups. Some sometimes you get good answers. Sometimes you get bad answers. But I think, in general, it seems like I don't know that it ever goes away, per se. I don't know if there's a way to get rid of it. I think you can manage it like a lot of things with stroke. You can find the ways to manage it. It's not ideal. Again, I was talking to a survivor today over in the UK, and it's like I hate the term new normal, but there does come a point, I think, at least for me in the last 5 years, it's like, okay, I want everything to be the way it was. Is that a reality? Is that even sane? Think. Probably not. Then I start to think. Or have I you know, as long as I feel like I've done enough each and every day to be better, you know, in a lot of ways, better husband, better house better father, better business owner, better better you know, whatever your definition of better is, are you doing things as a that that you feel good about? Ultimately, you know, would would I like everything to go back to normal? Sure.

00:44:28.713 --> 00:45:02.909
But, honestly, looking back now, coming up on the 5 year mark, I I like this version of me. It's not the preferred version for sure, but I like this from the guy that was not in great shape, was definitely a functioning alcoholic at 5 years ago, in 2019 prior to my stroke. You know, it was fun and games, but, like, that was kind of, you know, for, like, of a scary, sad man.

00:45:03.469 --> 00:45:51.940
I think I was dealing with a lot of things. I was dealing with a lot of stress at work, in life. My parents had just passed the year before. I I'd been you know, I wasn't, like, out of control to the point that outwardly, it looked terrible, but inside, you know, my legs were swollen. I was £500. Like, none of that was good. I was still smoking. The the you know, now I don't smoke. Now I don't drink. I don't even miss them. And that that's coming from a guy who thought he would never stop smoking, never stop drinking, and care less about that stuff now. So in a in a way, I'm really grateful. I know I always say that too, but I will say it is not easy.

00:45:52.659 --> 00:46:02.974
I think on the last note here, you know, kind of kind of in in wrapping up this episode of the podcast and then just in general with podcasting, you know, I so I wanna continue to do this show.

00:46:03.835 --> 00:46:41.608
I kinda I wanna continue to just talk to stroke survivors who really want the help, who wanna be a part of your community, who want to get out of that isolation, who want help. And I realized today, you can't help everybody, but you certainly can help the people that want for help that are, you know, maybe like myself, maybe a little ambitious in the beginning after the stroke, but I think especially for younger survivors. I am in a mood always willing to help any any any any survivor at any age who is looking for help or support or answers to questions. I mean, the community.

00:46:41.670 --> 00:46:48.650
That's why that's that's what drives me. But, to be honest and candid, sometimes it's hard to maintain that enthusiasm.

00:46:50.264 --> 00:47:12.094
Sometimes you meet survivors that are that are not they seem, for lack of a better word, they they seem like they're not committed. They don't want to get better necessarily. They just you know, and that's sad to see. That's that's hard for me to talk about because I don't want any survivor to give up. You should never give up.

00:47:12.875 --> 00:47:20.050
You know, I rarely say never, but I would say, you know, if if you are lucky enough to survive a stroke, you really should.

00:47:21.389 --> 00:47:54.750
I know it can be tough. There are definitely hard days. You know, it's the middle of summer here in Florida. July July is not a a friendly month in, Florida in terms of weather. So I think, you know, it's hard. It's hard for me going back to school, raising kids, running a business, having a wife, having a life, having all these things going on on top of being a stroke survivor. I think we can all agree it's very difficult. It's something I've struggled with this summer. I trying I'm trying to continue to build systems so that I can continue to be consistent with this podcast with the community.

00:47:55.744 --> 00:48:20.045
Sometimes things are hard. Sometimes life is difficult. I don't think this is unique, but I do think it is even harder for stroke survivors to maintain the consistency because even when you're doing your very best, a day can catch you by surprise, and, hopefully, it's just a day. Hopefully, it's just a day and it passes, and you could just sometimes, you can take a day for yourself.

00:48:21.219 --> 00:49:42.519
But it's hard because sometimes it makes sense because you wore a navy pound vest running for 4 hours over the weekend. And 2 days later, your body, was like, nope. You're taking a break or I'm gonna make you take a break. And, you know, I still wound up running that day, but I only ran, like, 5 miles on Tuesday, and I was like, bad, like and it's the first time in the all year, honestly, that I felt like that. You know, so I think the the I don't know exactly where I'm going with that, but I think we can all agree, as survivors, it is good to support other survivors. I really do wanna help survivors that are trying to figure things after them, you know, and maintaining enthusiasm for for and I'm not talking about just myself now. I'm talking about in general as the strokes were. How do you maintain enthusiasm? You know, maybe maybe I'll leave that for for next episode. But, yeah, really, keep me up that enthusiasm because I think I wouldn't say it's easy, but when you're in a wheelchair, or at least for me, when I was in the wheelchair at 6 foot 8, I didn't like that view of the world. I didn't like being how I was being treated in the wheelchair. I didn't like being felt petty. I didn't I didn't I didn't wanna be in the wheelchair. So for me, there was no greater motivation than to put me in a wheelchair. You're I'm not gonna walk again.

00:49:42.818 --> 00:50:08.335
There was no greater motivation for me to get out of that wheelchair, to prove the naysayers wrong, to prove, honestly, to myself that I could do it. It's really not about proving other people wrong. It's about proving myself right that I could do it. You know? And and I was super remote, but I think that does start to wane. How do you how do you how do you maintain enthusiasm throughout your survivor survivor journey?

00:50:08.335 --> 00:50:22.295
Because I imagine as we get go as the years add on, like, I'm doing a little bit each year, and I'm getting better and more refined at things. And I'm starting to feel like my old self in some ways. And, of course, there are costs because of the stroke.

00:50:22.994 --> 00:51:20.369
But I don't wanna lose who I am. But I think there are times where this is gonna happen. How do you how do you stay motivated? What are you know, understanding the emotions, you know, with your own lives and and all the different pieces and how they work together. I'm motivated. I mean, love to hear what other people have to say about how do you stay motivated? You know, for me, it's my kids, but my kids are getting a little older now. But, like, you know, it is helpful that for example, my boys are going into this sports. My youngest is about to play football, tackle football going to 3rd grade, which should be a whole lot of interesting, weeks that starts, and I'm I'm really curious how that goes. You know, I I'm lucky. Right? I have younger children, so I they almost they don't have to motivate me, but they do motivate me because I wanna be around for them. You know? And there is things like, I'm 41 turning 42 this year or later this year.

00:51:20.909 --> 00:51:50.190
I hope that I have done enough work on myself and my body and my emotions and all the things that go into that at me as a human that I you know, I'm not going back to my school to get my master's at 41 to have it all be for nothing. I'm I'm doing it because I believe in what I'm doing. I believe in what I can do in the and I wanna be able to do that. So that that is motivating. And I actually just talked about it here. It's making me think about that's how I maintain that motivation. But there there are definitely days. Right?

00:51:50.190 --> 00:52:52.360
We all have them. And, again, I don't think it has anything to do necessarily with being a stroke survivor. I think everybody, that's just mental health in general, keeping up motivation. Life isn't always, you know, pretty pictures and roses. Some days are tough, and you gotta really dig deep and think hard and use that grit and resilience to to to kinda, you know, not sound cliche, but to to to break through it, to move through it, to to know it's a temporary thing. And, you know, anyways, that's a lot of babble. But yeah. So next time, maybe we'll talk about motivation. I think I'm gonna refrain from the top part talking about the topic because I think next episode, I wanna leave open to a couple of things. I've been doing some things behind the scenes. Anyways, so I'm gonna skip what's up next on next episode. The surprise. Next episode, it will be 48. So we're getting close to 50. I'm hoping to kind of, knock out these next couple episodes, have a couple of guests break it up.

00:52:53.800 --> 00:53:03.835
Last thing I'll say, I think, is humor. Again, I I talked to a survivor over in the UK today, and I think humor is a big part of stroke, often overlooked, much like my tibia machine.

00:53:04.775 --> 00:53:15.960
Again, can't recommend that enough. But humor having having a sense of humor around stroke, you know, especially once we've already gone through it, it's like, alright. Well, try to make jokes.

00:53:15.960 --> 00:53:40.385
Try to have fun. You know? If that's that's your personality, then that's what make have a laugh. There's no reason not to. Yes, stroke is serious, stroke is hard. We all know that. But I think if you don't lighten the mood and have a little bit of fun every now and then, same thing, you know, your body tells you to take a break, take a break. It's it's the world's not gonna end because you need to take a day.

00:53:42.605 --> 00:55:30.800
So, yeah, try to remember that. And when you're taking a break, maybe check out I just, last couple of weeks, I have been burning through the Big Bang Theory, which was a show I was not super familiar with. People always talk about it, but I've been watching it kind of in this low, over the summer, and it's actually a really good show. I I I think my issue with shows in the past before they everybody switched over to Netflix and Max and all the streaming services, I gotta be honest, I don't think I would watch the show and wait a week for a 30 minute episode every week. I think I really enjoy the streaming aspect where I can get all 12 seasons and what watch watch hundreds of episodes in, in the background and just kinda do my work and do my thing. And it's, it's the way that works for me. Yeah. But, so, yeah, 2 2 big recommendations. Big Bang Theory is actually surprisingly good, and I should have known because some of the people in my life that have been recommending it for a really long time were, in fact, correct. I enjoyed the show not just because I I mean, because if you know anything about the show, they're all physicists, so they would on the fact that I'm in my master's program for psychology because I'm sure it's considered the the lesser scientific field when you compare physics and psychology, totally unrelated. But and, of course, I I been listening and watching a lot of podcasts. So there was Rogan's been big on on my to do list. I've been watching the Kelsey Brothers, of course, Calm Down podcast with Aaron and Carissa. A lot of good stuff out there. A lot of good entertainment.

00:55:33.340 --> 00:56:11.364
Yeah. Those are kind of all the things I recommend. But, again, spasticity, like I said, to wrap this up, is is is unique is great. There are lots of different solutions. I would love to hear things you've tried, things you've experimented with. Have you found good results with certain things? Yeah. Hit up the show. You can always text the show now. Right from the web page, there's a there's a link to text the show. Of course, you can go to dotcom podcast.lobalscriber.com. You can go to Survivor Science, get the link there too to hop on over to the podcast, send a message. Yeah. Hit me up on social.

00:56:12.065 --> 00:56:19.780
Anyways, I am going to leave it there, and, next week is gonna be episode 47. So, let's see.