68. Survivor Science Soundbite: Recovery is a Grind, Buildi…
Send us a text In this episode of Survivor Science Soundbites , I reflect on the realities of recovery from stroke and MS, sharing my perso…
Dec. 9, 2024
68. Survivor Science Soundbite: Recovery is a Grind, Building Discipline and Community
In this episode of Survivor Science Soundbites, I reflect on the realities of recovery from stroke and MS, sharing my personal journey and the lessons I’ve learned along the way. Recovery is a grind. It takes discipline, consistent effort, and a willingness to reassess your goals as you go. I open up about the challenges I’ve faced, from ankle stiffness to wound healing, and how I’ve navigated these hurdles through persistence and self-advocacy.
We also dive into the importance of building and engaging with a supportive community. Whether it’s connecting with fellow survivors on social media or planning initiatives like a virtual content creator meetup, I share how collaboration and shared experiences can fuel motivation and growth.
If you’re looking for practical insights, real talk about the ups and downs of recovery, and encouragement to keep pushing forward, this episode is for you. Let’s tackle the grind of recovery together, one step at a time.
Hey there! If you’re a stroke survivor, caregiver, or someone navigating recovery, I want to invite you to check out The Center by Survivor Science. Head over to center.survivorscience.com and join a community that understands what you're going through.
And if you’re not quite ready to join, that’s okay! You can still access free resources at survivorscience.com
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Medical Disclaimer: All content found on this channel is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. The information provided, while based on personal experiences, should not replace professional medical counsel. Always consult with your physician or another qualified health provider for any questions you have regarding a medical condition or treatment. Always seek professional advice before starting a new exercise or therapy...
Transcript
WEBVTT
00:00:00.000 --> 00:00:03.330
Welcome back to another episode of survivor science soundbites.
00:00:03.779 --> 00:00:06.929
This week, the topic we are talking about is.
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That is a good question.
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I don't know what the topic is really.
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Last week we talked about ego.
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And this week.
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I'm talking about.
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What it really takes kind of a look back on the last 1,813 days into stroker.
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And Ms.
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Recovery.
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That is how many days it's been.
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Since my stroke.
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A little bit less for the Ms.
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So subtract two months or 60 days from that number.
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So 1700 and something.
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But yeah, just been really doing a lot of stuff, trying to get more involved over on Instagram.
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It seems like the community is solid over there.
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Definitely, um, was.
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Lazy getting over there.
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I've been on Tik TOK for a couple of years, but.
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Yeah, happy to be over on Instagram.
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Um, you know, by proxy that kind of puts me off Facebook again.
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But yeah, I just been thinking about a ton of things, so I don't have a super big topic, but I do think this is important because.
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I've done a couple posts the last two days, um, on how long it's been.
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So we're coming up on my five-year anniversary.
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Later this month.
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Since my stroke.
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And yeah, kind of looking back on, what's taken the discipline, the hard work, all the things we usually talk about.
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Um, But yeah, just really kind of, it occurred to me that, you know, A stroke.
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Showcase tricky.
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Right?
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Everybody wants to know how to fix this or fix that.
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And it's really, really hard.
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You have to be as insane as I am to kind of.
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Go through all the research, go through all the things, find all the things, tests, all the things.
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It really, it could be a lot simpler.
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However, because stroke is so unique to every individual.
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It also is tricky.
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There's no roadmap.
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There is no solution.
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But there are a lot of things that are important.
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It's important to have discipline.
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It's important to be focused.
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It's important to.
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Constantly assess and reassess.
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Where you're at, what you're doing, where you want to go.
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Are you on a plateau?
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Are you through a plateau?
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There's a million questions.
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Um, and so, you know, that's the purpose of this podcast.
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Try to answer some of them sooner rather than later.
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Um, talk to another truck, whoever yesterday.
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He's awesome.
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Actually jumped into, I saw somebody, he posted something the other day.
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I made a comment and then I, I saw right underneath my post.
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And his reply.
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I saw a question from a stroke survivor about ankle stiffness and getting better mobility in her ankle.
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And so I hopped in and I immediately went over to the DMS and just said, Hey, I didn't mean to hop in the middle of your conversation there, but I just know how hard it is to.
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Kind of, um, For lack of a better word, unfuck your ankle after.
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So my ankle and my right side was paralyzed my right leg, my right hand, right side of my body was paralyzed for those that don't know.
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But the ankle was really stiff for a couple of reasons.
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One, I also had a venous leg ulcer wound on my right leg, where I was going to wound care for almost three years and change.
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So I was constantly wrapped in, basically imagine having a cast.
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But flexible and having that on.
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All the time for like three years.
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I had like a shower leg cast, you know, there are very, it was rough.
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I mean, it was, it was fine because I was able to wash and do those things, but like the wound itself was.
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It took forever to heal.
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They said, you know, I did everything right.
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I had everything wrapped.
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We tried all sorts of treatments.
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We tried many different procedures.
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Some things worked, some things didn't, it did close up a couple times, but then it would reopen.
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I think I finally have gotten to a place where fingers crossed.
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It's good to go for the long haul now.
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Which is just an annoying side note on top of being a Stokes.
00:04:05.530 --> 00:04:07.989
To I wrote and having Ms was that like wound.
00:04:08.469 --> 00:04:11.258
I think it started as a bug bite back in 2018.
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I didn't address it until 2019.
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As soon as I addressed it, that's when everything kind of.
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I started doing, addressing that.
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Issue and concern in December of 2019.
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And it was only a couple of weeks later, I would have the stroke.
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So.
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I don't think they're related necessarily, but it was a pretty good indication that I was in bad shape.
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And in poor health at that time.
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The reason it took so long to recover is, you know, some doctors say it might be the Ms.
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Some have attributed it to being on blood thinners.
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Whatever it is.
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I'm glad I think it's finally done.
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Like close for good.
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But again, it's been a long, 1,813 days, 1,813 days since my stroke.
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And I did a post to where I was talking about when I had my stroke.
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I was 530 pounds.
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Now down to around two 60, give or take.
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And that really flex is yeah, I mean, not actually under two 60, but.
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Kind of reluctant to be under two 60.
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Tried to get back in the gym and lift some weights and really focused on the weight side things and scale back the running.
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What else did I want to talk about today?
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Sorry, I'm trying to look at my notes cause I did not make a ton of notes for today's podcast.
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I've just been thinking about a million different things.
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Oh, So if you're still with me I am having a sort of survivor.
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um, content creator, meetup.
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So, whether you're a stroke survivor, an ally, a caregiver, a friend, a family member you're involved in this show community anywhere shape or form.
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I'm going to officially announce that later today on social media.
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Hoping to beat some other stroke survivors who are content creators or aspiring content creators.
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And what does that mean?
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That means.
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You're somebody sharing your story.
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You're sharing the journey.
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Whether it's Instagram, Tik, TOK, Facebook, it doesn't matter where you're sharing it or how we're sharing it.
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But, you know, Kind of coming together collectively trying to meet other survivors, maybe collaboration, opportunities, networking opportunities.
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Really the sky's the limit.
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It's.
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It's free and open to the public.
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And again, I'll have links out to that later today and throughout the week.
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So that you come and join.
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Um, I'm putting it on free of charge.
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It's a virtual zoom event and I guess there'll be open to the first a hundred people.
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If for some miraculous reason, more than a hundred people sign up, I will try to extend the.
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The invite and we can always, if you can't make it, I'm hoping to have another one, if there's a good response.
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So I think that'll be really cool.
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Cause I know there's a lot of us creating content, but there's not a lot of us.
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I mean, we are connecting in the DMS, but I'm sure there's a lot of opportunities that you know, I'm hoping this will bring us all together as a community.
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And so.
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You know, stroke is hard.
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Stroke is brutal.
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Stroke is relentless.
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We've all tried different things.
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We all had different experiences.
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And I think the more we can collaborate and share and grow together.
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The better this community will be, because let's be honest.
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There's nobody really.
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Stepping in for the Shokes, whoever community and just saying, Hey.
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Let's all come together.
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Let's pool resources.
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Let's share what we've learned and yes, we all try to do it as creators sharing our journeys individually.
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But no, no.
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You know, like, there's a lot of groups and associations out there that are busy fundraising for research and things like that, but they're not really bringing.
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Actual survivors who have already left acute care and therapies and are really kind of left to their own devices.
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So that's what we're really hoping to do is meet other creators myself, and I'm hoping to help other creators.
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And if you aren't a creator yet, and you're thinking about being a creator.
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Because let's be honest again.
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I had my stroke in December, 2019.
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I was a developer.
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I worked in the web.
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I had a big presence on a number of platforms.
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And I just decided one day during my recovery to delete all social media.
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In hindsight that wasn't probably the smartest idea, but it allowed me to transform my, my new focus in, you know, Rebuild, um, My audience, because I think a lot of developers can give a crap that I had a stroke or still don't give a crap, even though I could probably show them or teach them a thing or two at this point.
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But You know, it's all for the best, I guess.
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Um, you know, it's a lesson I learned.
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I don't think everybody should do that.
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I think it's probably unwise looking back, but yeah.
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So, yeah, it's been a long journey.
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Like I said a ton of days, a ton of work, a towel.
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A ton of lessons learned.
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Through trial and error.
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You know, and like I said, stroke is brutal.
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It's relentless and, you know, I keep posting it, but I think somebody said, I can't remember who said this, but.
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Shout out to whoever said it.
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I can't remember who to attribute it to, and I don't want to get the wrong person, but.
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You really can't cheat the grind when it comes to stroke.
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Believe me, I.
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I tried early on.
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I tried to fix everything immediately.
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That's an impossible task.
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To put a mildly.
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You really need.
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There are some things that are true, probably for all stroke survivors.
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You need to assess where you're at in the beginning, where you want to go.
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What you want to fix?
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What you need to fix?
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Do you want to walk?
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Can you walk?
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Um, hands, a lot of people have hand issues.
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Fine.
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Motor skills becomes a real pain.
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It's still a pain for me, five years out.
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And if you listened last week, it's still a pain for Jason.
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And he'd send yours out.
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And so it never gets easier.
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It gets different.
00:09:49.750 --> 00:09:55.750
I think some of the things that I was thinking about over the weekend, or like, you know, a lot of us do figure out ways to.
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Improve and.
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Change our situation.
00:10:00.940 --> 00:10:03.820
And, um, but what's tricky too.
00:10:03.879 --> 00:10:20.110
What I was thinking about over the weekend was that like, You know, It's good to be independent and it's good to get to a place where you can do things, but also how much do you as a survivor, like compensate with the left side for the right side or vice versa?
00:10:21.039 --> 00:10:26.649
You know, and I think all of us who've been therapies have heard our therapists say, Don't compensate.
00:10:26.649 --> 00:10:36.070
Don't compensate, but you kind of have to, when you get out in the real world, because you have to do certain things, maybe you're a parent and you ha you're a younger survivor and you have kids.
00:10:37.389 --> 00:10:41.799
You know, you, you have a job, you have work, you have things you want to do just daily life.
00:10:41.830 --> 00:10:42.129
Right.
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We, we all compensate a little bit.
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Because it's necessary.
00:10:45.850 --> 00:10:46.960
We can't ask for help.
00:10:47.440 --> 00:10:51.429
24 7, but we can improve ourselves to continue to.
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You know, sort of not rely on the help as much.
00:10:55.360 --> 00:10:59.139
I think it's always good to have help and be comfortable asking for help.
00:10:59.169 --> 00:11:02.830
That's part of being a survivor is to get very accustomed to that quickly.
00:11:03.879 --> 00:11:05.559
And I sat on Bill's podcast.
00:11:05.590 --> 00:11:14.080
Bill G from over in Australia, for those that haven't listened, I was on episode 3, 27 with him on his show recovery after stroke.
00:11:15.820 --> 00:11:25.509
But yeah, you, um, You have to kind of figure things out and it's tough to figure out the balance between figuring it out and working on it.
00:11:25.509 --> 00:11:26.500
And it's all.
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Really tricky.
00:11:28.809 --> 00:11:31.960
Um, what else is going on about stroke?
00:11:31.990 --> 00:11:35.289
That it's it's, you know, like I said, I haven't had an event this week.
00:11:35.340 --> 00:11:37.590
Later this week, hopefully you can join us.
00:11:38.370 --> 00:11:39.240
That should be great.
00:11:39.289 --> 00:11:40.700
Hopefully a lot of people attend.
00:11:40.730 --> 00:11:43.669
I'm really looking forward to meeting a bunch of stroke survivors.
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It's just a casual chat, a hangout.
00:11:46.549 --> 00:11:47.960
It depends on how many people show up.
00:11:47.990 --> 00:11:49.190
We'll try to record it.
00:11:50.000 --> 00:11:53.210
But if you can't make it sign up anyways, so you can get notified of the next one.
00:11:53.210 --> 00:11:54.259
If you're interested.
00:11:54.799 --> 00:12:01.190
Again, it's all based on kind of community feedback and hopefully it's a, a promising event.
00:12:02.299 --> 00:12:03.440
And I know it's last minute.
00:12:03.440 --> 00:12:06.769
It's the week of, but you know, if you can make it, you can make it great.
00:12:06.799 --> 00:12:11.360
And if you can't, like I said, just sign up so that I know next time to send out an invite.
00:12:12.230 --> 00:12:14.750
Just to alert you that we're having another one when we do.
00:12:14.809 --> 00:12:17.299
So I think that'll be a really cool thing.
00:12:17.299 --> 00:12:20.779
And I think it's something that we need in the community as jokes of ours.
00:12:21.330 --> 00:12:21.659
Yeah.
00:12:22.740 --> 00:12:23.789
So what else is going on?
00:12:23.899 --> 00:12:25.009
Putting in a lot of miles.
00:12:25.009 --> 00:12:26.269
It's the holiday season.
00:12:26.570 --> 00:12:29.179
Definitely mindful of the holiday season.
00:12:29.720 --> 00:12:35.360
Trying to scale back on the miles a little bit and focus on some, some of the things that I want to.
00:12:36.259 --> 00:12:37.940
Wrap up before the end of the year.
00:12:37.970 --> 00:12:42.950
Um, try to get some things organized over on survivor science, really happy with the transition last week.
00:12:42.980 --> 00:12:44.210
I'm finally getting everything.
00:12:44.720 --> 00:12:49.340
The podcast officially over from lovable server over to server science.
00:12:50.090 --> 00:12:52.850
Getting more things out on again on Instagram Tik doc.
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A little behind on clips trying to organize some things, really looking to.
00:12:59.600 --> 00:13:02.590
Hop into the new year, fully foot on the pedal.
00:13:02.590 --> 00:13:03.580
Ready to go?
00:13:03.639 --> 00:13:08.440
Um, yeah, just, just, it's been I'll be honest, it's a tough week.
00:13:08.470 --> 00:13:12.470
I got a lot of schoolwork to finish up one of the final weeks of the term.
00:13:12.470 --> 00:13:14.809
So everything is due at the end of this week.
00:13:14.809 --> 00:13:16.460
That's definitely top of mind.
00:13:17.179 --> 00:13:21.049
Obviously, if you are, um, A stroke survivor.
00:13:21.049 --> 00:13:23.389
Who's unemployed in paying for your own health insurance.
00:13:23.389 --> 00:13:30.370
Now is that time to fund the kind of wrap up that before December 15th, I think depending on where you're going, who you use.
00:13:31.600 --> 00:13:35.679
Always an interesting dilemma navigating the health insurance world as a survivor.
00:13:35.830 --> 00:13:41.110
But especially in the early days, if you have trouble talking or can't talk or don't have a lot of help and support.
00:13:42.399 --> 00:13:44.710
That is a giant landmine.
00:13:44.740 --> 00:13:55.149
And I think most of us have learned if you haven't, you certainly will quickly, you have to advocate for yourself, find somebody who can help you navigate and advocate for you on your behalf.
00:13:55.179 --> 00:13:56.409
It's a really.
00:13:57.669 --> 00:13:58.990
Serious issue.
00:13:59.139 --> 00:14:02.919
And I'm not going to get into too much, but it's, it's a, it's a lot of work.
00:14:02.919 --> 00:14:07.059
It's literally like a full-time job, especially in the early years of recovery.
00:14:08.379 --> 00:14:15.340
Things that happen for seemingly no reason and things that happened for good reason and things that happen for absolutely no reason.
00:14:15.370 --> 00:14:15.789
It's eight.
00:14:16.149 --> 00:14:17.740
Like I said, it's a giant landmine.
00:14:19.090 --> 00:14:22.389
Um, but yeah, let's just, let's go back into the grind a little bit.
00:14:22.389 --> 00:14:24.039
I mean, people always ask.
00:14:25.000 --> 00:14:25.659
How do you do it?
00:14:25.659 --> 00:14:28.120
Or, you know, I post a lot on social media.
00:14:28.120 --> 00:14:29.860
I show myself as the example.
00:14:30.279 --> 00:14:33.820
Not because I'm trying to brag, not because of trying to show off none of that.
00:14:34.690 --> 00:14:43.840
It's really because I want to show other survivors out there that I'm leading by example and the things that I'm saying and things I'm doing are things that are happening in like, I'm not just.
00:14:44.350 --> 00:14:44.860
Touting.
00:14:46.659 --> 00:14:52.120
You know, Popal serous or, or, or, you know, needless stuff like I'm putting in the work.
00:14:52.330 --> 00:14:53.620
And I continue to do that.
00:14:53.620 --> 00:14:55.120
I've been doing it for five years.
00:14:55.720 --> 00:14:57.370
That's why a lot of people on Instagram.
00:14:57.870 --> 00:15:02.129
You know, I love some of the people that I've met on Instagram, especially like Jason, last week.
00:15:02.549 --> 00:15:08.149
From the episode, a full episode last week, it's it's inspiring to see other survivors doing it.
00:15:08.179 --> 00:15:10.039
And honestly, if.
00:15:11.029 --> 00:15:12.200
I know it sounds corny.
00:15:12.200 --> 00:15:14.480
It sounds cliche, but if it helps one person great.
00:15:14.570 --> 00:15:16.610
Um, if it helps somebody that you.
00:15:16.639 --> 00:15:19.129
You know, is on the spectrum of possibly having a stroke.
00:15:19.940 --> 00:15:26.509
Hopefully it helps them because God knows if, if I had any knowledge of just how hard this journey is.
00:15:27.379 --> 00:15:28.309
As you well know.
00:15:30.320 --> 00:15:32.120
I would've seen things a lot sooner.
00:15:32.149 --> 00:15:39.200
I just didn't think I was running out of time until I ran out of time and then became a statistic that I really.
00:15:39.740 --> 00:15:45.980
Part of a club that I'd never wanted to be a part of a, I'm happy to be part of it now, but only because I don't have a choice.
00:15:47.240 --> 00:15:49.309
And I think many survivors believe that.
00:15:49.370 --> 00:15:53.210
Um, and not every survivor is somebody that was in his better shape as me.
00:15:53.240 --> 00:15:55.610
There are many people who have hemorrhagic strokes for.
00:15:55.759 --> 00:15:58.370
You know, maybe stress, maybe seemingly no reason.
00:15:59.000 --> 00:16:05.929
A lot of stroke survivors, especially younger ones are typically people who have a heart condition that they were completely unaware of.
00:16:06.620 --> 00:16:09.139
It may have nothing to do with diet and exercise.
00:16:09.230 --> 00:16:10.580
I've met many who are.
00:16:11.539 --> 00:16:12.980
Runner's and CrossFitters.
00:16:13.610 --> 00:16:14.840
Prior to having a stroke.
00:16:14.909 --> 00:16:16.379
You know, it might've been stressed, but.
00:16:16.950 --> 00:16:17.460
Really.
00:16:18.269 --> 00:16:20.159
Seemingly, they weren't doing anything wrong.
00:16:20.190 --> 00:16:21.600
I'd met at another one last week.
00:16:21.679 --> 00:16:24.169
She also was part of that 20% where.
00:16:25.159 --> 00:16:33.440
You know, those statistics vary, but I do think, um, I think a lot of strokes and strokes through ours could have changed sooner.
00:16:34.399 --> 00:16:40.759
I feel like it's more like 50, 50, maybe that's unfair, but you know, It really just depends.
00:16:40.940 --> 00:16:47.899
And the statistics don't matter because once you're part of the club, Again, the club that nobody wants to have a part of we're part of the club, right?
00:16:47.899 --> 00:16:49.039
Your survivor for her life.
00:16:49.099 --> 00:16:50.210
That's that's kinda.
00:16:51.649 --> 00:16:58.940
The whole purpose of survivor science and the community behind survivors science called the center, which you know, is built and run by me.
00:16:59.809 --> 00:17:02.960
It's to help people manage daily life to get through those tasks.
00:17:03.028 --> 00:17:05.940
To, um, you know, I was talking about it earlier.
00:17:06.778 --> 00:17:09.269
I hopped in the comment section of somebody posts.
00:17:09.449 --> 00:17:11.519
And I did reach out to make sure it was cool.
00:17:11.519 --> 00:17:21.088
And of course, He was very kind and said, absolutely no problem, because he also believes he doesn't have all the answers and he couldn't really answer the question because he didn't have that same experience.
00:17:22.019 --> 00:17:26.460
But I was able to hop in and support that individual and just be like, Hey, here are the things that I tried.
00:17:26.460 --> 00:17:28.019
Here's here's what worked for me.
00:17:28.348 --> 00:17:29.759
I don't know for work for you.
00:17:29.759 --> 00:17:32.278
I don't know your exact symptoms, experiences.
00:17:33.900 --> 00:17:35.219
It's the tibialis machine.
00:17:35.250 --> 00:17:39.838
A lot of people talk about weakness in their foot and drop foot and strengthening that and a.
00:17:40.710 --> 00:17:43.528
Stretching it there's, you know, there's yoga tools.
00:17:43.559 --> 00:17:45.210
There's ankle weights there.
00:17:45.239 --> 00:17:46.349
There's the AFO.
00:17:46.380 --> 00:17:47.880
There's a lot of devices.
00:17:48.809 --> 00:17:50.039
There's a lot of stretching.
00:17:50.130 --> 00:17:59.190
Um, I will tell you the two biggest things that have helped me in stroke recovery with walking, I think have happened this year, which was finding that tibialis machine.
00:17:59.880 --> 00:18:00.778
It's made by Titan.
00:18:01.710 --> 00:18:02.849
There are weightlifting company.
00:18:02.849 --> 00:18:06.719
You can find the machine on Amazon and it's just a dual foot machine.
00:18:06.719 --> 00:18:07.829
So it's helpful.
00:18:07.888 --> 00:18:13.170
Um, It sorta just gives you more range of motion in that ankle to move it up and down.
00:18:13.349 --> 00:18:15.539
You can add weights as you can get stronger.
00:18:16.349 --> 00:18:26.250
And then the other thing that surprisingly I had not thought about, and nobody mentioned again, was starting with kettlebells and just doing farmer's walks this year, like literally in less than four months.
00:18:27.358 --> 00:18:29.909
Has tremendously improved my, my.
00:18:30.989 --> 00:18:33.690
A lot of things with my lower leg and calf and ankle.
00:18:34.500 --> 00:18:36.809
I mean with balance it's, it's really improved.
00:18:36.809 --> 00:18:38.159
So I've been pleased with that.
00:18:38.659 --> 00:18:41.358
But yeah, again, there's no cheating the grind.
00:18:41.449 --> 00:18:43.128
That's what I really want to drive home.
00:18:43.128 --> 00:18:46.459
This episode is that like, Believe me, I'm from Jersey.
00:18:46.459 --> 00:18:47.298
I would've tried.
00:18:47.298 --> 00:18:48.169
I did try.
00:18:48.169 --> 00:18:48.919
I tried.
00:18:49.818 --> 00:19:02.808
So many things, too many things in the beginning, and it was, it was not, not worth it, but like, I just wish I would have realized sooner rather than later that like, okay, it really is baby steps.
00:19:03.409 --> 00:19:04.699
There is a process.
00:19:04.729 --> 00:19:06.199
I do think therapy works.
00:19:06.199 --> 00:19:08.419
I think those are great building blocks.
00:19:08.419 --> 00:19:09.588
Do not get me wrong.
00:19:10.159 --> 00:19:13.818
Absolutely do think safe, smart, and work with your therapy teams.
00:19:14.749 --> 00:19:15.979
But just realize.
00:19:16.759 --> 00:19:19.368
There becomes a point you're going to hit plateaus.
00:19:19.398 --> 00:19:20.868
How do you get past those plateaus?
00:19:20.868 --> 00:19:22.398
You have to do the research.
00:19:23.088 --> 00:19:25.848
You have to look to people that have actual experience.
00:19:26.419 --> 00:19:29.778
Ask questions on social media, ask questions and the DMS.
00:19:29.778 --> 00:19:31.009
You can ask questions to me.
00:19:31.009 --> 00:19:31.999
You can email the show.
00:19:31.999 --> 00:19:32.838
You can email.
00:19:33.409 --> 00:19:37.278
Through the website, like it's, it's just keep asking questions.
00:19:37.429 --> 00:19:40.398
As somebody gets you an answer that actually works for you.
00:19:42.169 --> 00:19:43.788
I just know that it's hard.
00:19:43.878 --> 00:19:45.919
And again, I don't have all the answers.
00:19:45.919 --> 00:19:46.969
I certainly do not.
00:19:47.028 --> 00:19:49.818
I am very forthright about that, but I just think.
00:19:50.449 --> 00:19:53.568
The more questions you ask, the more you persist.
00:19:54.318 --> 00:19:58.308
Look for people that are having issues that you've had, they don't have to be strokes of hours.
00:19:58.308 --> 00:20:07.009
They could just be somebody like if you have an ankle issue, I look for somebody that broke their ankle and maybe they had a weird thing that nobody else has thought about or use that.
00:20:07.818 --> 00:20:08.808
May work for you.
00:20:08.808 --> 00:20:10.759
I mean, I saw it the other day strokes.
00:20:11.398 --> 00:20:11.939
Stroke.
00:20:12.449 --> 00:20:14.159
Sasquatch on Tik TOK.
00:20:14.189 --> 00:20:17.219
He showed a, a, a believer as a yoga.
00:20:18.239 --> 00:20:19.888
Foot stretching tool.
00:20:19.919 --> 00:20:23.338
I should find a link to the video in the show notes.
00:20:24.148 --> 00:20:26.128
But it was something I hadn't seen before.
00:20:26.128 --> 00:20:27.568
I've seen thousands of bands and.
00:20:28.439 --> 00:20:35.548
All sorts of resistance things, but I hadn't seen that particular thing and it looked really interesting and I, again, I think I'm okay there now.
00:20:35.909 --> 00:20:41.729
Probably could always use improvement, but, um, you know, I'm at the point at which I'm tired of buying tools.
00:20:41.729 --> 00:20:41.939
So.
00:20:42.538 --> 00:20:43.709
I'm just dumb buying tools.
00:20:43.709 --> 00:20:46.919
I think for now, for the time being until there, the really becomes a need.
00:20:48.419 --> 00:20:48.868
But yeah.
00:20:48.919 --> 00:20:54.858
This episode been a little long-winded, but again, I encourage you, um, 1,813 days into this.
00:20:54.888 --> 00:20:55.848
It's not easy.
00:20:55.848 --> 00:20:56.778
It is a grind.
00:20:57.378 --> 00:21:02.959
The sooner you realize that the sooner you put in the work, the sooner you just keep doing the things that are boring as hell.
00:21:04.189 --> 00:21:04.548
It.
00:21:05.568 --> 00:21:09.679
It does turn around if you put in the effort, but again, there's no magic pill.
00:21:10.368 --> 00:21:13.128
Nothing, nothing magical is going to happen one day.
00:21:13.128 --> 00:21:17.298
I mean, Of course, there's always the exception, but do not rely on that.
00:21:17.838 --> 00:21:19.038
Just keep putting in the work.
00:21:19.038 --> 00:21:20.088
That's all I can say.
00:21:20.838 --> 00:21:22.489
Anyways, we'll leave it there for this episode.
00:21:22.528 --> 00:21:29.159
Thanks for joining me on survivor science soundbite, and a while I will see you later this week, either Wednesday or Friday, for sure.
00:21:29.848 --> 00:21:31.199
Okay, bye.
00:00:00.000 --> 00:00:03.330
Welcome back to another episode of survivor science soundbites.
00:00:03.779 --> 00:00:06.929
This week, the topic we are talking about is.
00:00:07.469 --> 00:00:08.550
That is a good question.
00:00:09.119 --> 00:00:10.800
I don't know what the topic is really.
00:00:10.859 --> 00:00:12.330
Last week we talked about ego.
00:00:12.750 --> 00:00:13.560
And this week.
00:00:14.218 --> 00:00:15.179
I'm talking about.
00:00:15.750 --> 00:00:22.289
What it really takes kind of a look back on the last 1,813 days into stroker.
00:00:22.289 --> 00:00:22.739
And Ms.
00:00:22.769 --> 00:00:23.280
Recovery.
00:00:24.030 --> 00:00:25.920
That is how many days it's been.
00:00:26.420 --> 00:00:27.379
Since my stroke.
00:00:28.219 --> 00:00:29.750
A little bit less for the Ms.
00:00:29.780 --> 00:00:32.719
So subtract two months or 60 days from that number.
00:00:32.719 --> 00:00:34.399
So 1700 and something.
00:00:35.750 --> 00:00:40.700
But yeah, just been really doing a lot of stuff, trying to get more involved over on Instagram.
00:00:40.700 --> 00:00:43.070
It seems like the community is solid over there.
00:00:43.729 --> 00:00:45.950
Definitely, um, was.
00:00:46.579 --> 00:00:47.838
Lazy getting over there.
00:00:47.838 --> 00:00:49.880
I've been on Tik TOK for a couple of years, but.
00:00:50.990 --> 00:00:52.640
Yeah, happy to be over on Instagram.
00:00:52.670 --> 00:00:57.289
Um, you know, by proxy that kind of puts me off Facebook again.
00:00:57.948 --> 00:01:03.948
But yeah, I just been thinking about a ton of things, so I don't have a super big topic, but I do think this is important because.
00:01:04.609 --> 00:01:08.478
I've done a couple posts the last two days, um, on how long it's been.
00:01:08.478 --> 00:01:10.698
So we're coming up on my five-year anniversary.
00:01:11.150 --> 00:01:12.349
Later this month.
00:01:12.859 --> 00:01:13.698
Since my stroke.
00:01:14.808 --> 00:01:20.599
And yeah, kind of looking back on, what's taken the discipline, the hard work, all the things we usually talk about.
00:01:20.929 --> 00:01:26.838
Um, But yeah, just really kind of, it occurred to me that, you know, A stroke.
00:01:28.099 --> 00:01:28.849
Showcase tricky.
00:01:28.879 --> 00:01:29.179
Right?
00:01:29.448 --> 00:01:31.939
Everybody wants to know how to fix this or fix that.
00:01:31.939 --> 00:01:33.948
And it's really, really hard.
00:01:34.549 --> 00:01:37.489
You have to be as insane as I am to kind of.
00:01:38.659 --> 00:01:43.159
Go through all the research, go through all the things, find all the things, tests, all the things.
00:01:43.849 --> 00:01:45.829
It really, it could be a lot simpler.
00:01:46.459 --> 00:01:49.429
However, because stroke is so unique to every individual.
00:01:50.209 --> 00:01:52.429
It also is tricky.
00:01:52.429 --> 00:01:53.750
There's no roadmap.
00:01:53.780 --> 00:01:55.159
There is no solution.
00:01:55.969 --> 00:01:58.250
But there are a lot of things that are important.
00:01:58.280 --> 00:01:59.989
It's important to have discipline.
00:01:59.989 --> 00:02:01.579
It's important to be focused.
00:02:01.609 --> 00:02:02.748
It's important to.
00:02:03.379 --> 00:02:05.629
Constantly assess and reassess.
00:02:06.468 --> 00:02:09.229
Where you're at, what you're doing, where you want to go.
00:02:09.229 --> 00:02:10.399
Are you on a plateau?
00:02:10.399 --> 00:02:11.689
Are you through a plateau?
00:02:12.379 --> 00:02:13.610
There's a million questions.
00:02:13.729 --> 00:02:17.479
Um, and so, you know, that's the purpose of this podcast.
00:02:17.509 --> 00:02:19.879
Try to answer some of them sooner rather than later.
00:02:20.599 --> 00:02:23.419
Um, talk to another truck, whoever yesterday.
00:02:23.449 --> 00:02:24.560
He's awesome.
00:02:25.058 --> 00:02:29.079
Actually jumped into, I saw somebody, he posted something the other day.
00:02:29.079 --> 00:02:32.739
I made a comment and then I, I saw right underneath my post.
00:02:33.399 --> 00:02:34.479
And his reply.
00:02:35.079 --> 00:02:41.439
I saw a question from a stroke survivor about ankle stiffness and getting better mobility in her ankle.
00:02:42.579 --> 00:02:51.699
And so I hopped in and I immediately went over to the DMS and just said, Hey, I didn't mean to hop in the middle of your conversation there, but I just know how hard it is to.
00:02:52.509 --> 00:02:57.729
Kind of, um, For lack of a better word, unfuck your ankle after.
00:02:58.359 --> 00:03:05.109
So my ankle and my right side was paralyzed my right leg, my right hand, right side of my body was paralyzed for those that don't know.
00:03:06.669 --> 00:03:09.789
But the ankle was really stiff for a couple of reasons.
00:03:09.879 --> 00:03:17.919
One, I also had a venous leg ulcer wound on my right leg, where I was going to wound care for almost three years and change.
00:03:18.669 --> 00:03:23.139
So I was constantly wrapped in, basically imagine having a cast.
00:03:23.558 --> 00:03:25.539
But flexible and having that on.
00:03:26.079 --> 00:03:27.819
All the time for like three years.
00:03:28.719 --> 00:03:33.069
I had like a shower leg cast, you know, there are very, it was rough.
00:03:33.099 --> 00:03:38.169
I mean, it was, it was fine because I was able to wash and do those things, but like the wound itself was.
00:03:39.519 --> 00:03:40.780
It took forever to heal.
00:03:41.558 --> 00:03:43.929
They said, you know, I did everything right.
00:03:43.959 --> 00:03:45.099
I had everything wrapped.
00:03:45.129 --> 00:03:46.689
We tried all sorts of treatments.
00:03:46.689 --> 00:03:48.909
We tried many different procedures.
00:03:49.838 --> 00:03:54.519
Some things worked, some things didn't, it did close up a couple times, but then it would reopen.
00:03:55.000 --> 00:03:58.599
I think I finally have gotten to a place where fingers crossed.
00:03:58.599 --> 00:04:01.058
It's good to go for the long haul now.
00:04:02.649 --> 00:04:05.439
Which is just an annoying side note on top of being a Stokes.
00:04:05.530 --> 00:04:07.989
To I wrote and having Ms was that like wound.
00:04:08.469 --> 00:04:11.258
I think it started as a bug bite back in 2018.
00:04:11.650 --> 00:04:14.049
I didn't address it until 2019.
00:04:14.770 --> 00:04:17.470
As soon as I addressed it, that's when everything kind of.
00:04:18.129 --> 00:04:19.928
I started doing, addressing that.
00:04:20.678 --> 00:04:23.319
Issue and concern in December of 2019.
00:04:23.379 --> 00:04:25.990
And it was only a couple of weeks later, I would have the stroke.
00:04:26.048 --> 00:04:26.500
So.
00:04:27.759 --> 00:04:32.529
I don't think they're related necessarily, but it was a pretty good indication that I was in bad shape.
00:04:33.038 --> 00:04:34.870
And in poor health at that time.
00:04:36.370 --> 00:04:41.230
The reason it took so long to recover is, you know, some doctors say it might be the Ms.
00:04:41.230 --> 00:04:44.069
Some have attributed it to being on blood thinners.
00:04:44.759 --> 00:04:45.720
Whatever it is.
00:04:45.870 --> 00:04:47.910
I'm glad I think it's finally done.
00:04:48.779 --> 00:04:49.920
Like close for good.
00:04:50.910 --> 00:04:58.560
But again, it's been a long, 1,813 days, 1,813 days since my stroke.
00:04:59.100 --> 00:05:01.709
And I did a post to where I was talking about when I had my stroke.
00:05:01.709 --> 00:05:03.180
I was 530 pounds.
00:05:03.720 --> 00:05:06.120
Now down to around two 60, give or take.
00:05:06.779 --> 00:05:10.720
And that really flex is yeah, I mean, not actually under two 60, but.
00:05:11.829 --> 00:05:13.870
Kind of reluctant to be under two 60.
00:05:15.040 --> 00:05:19.910
Tried to get back in the gym and lift some weights and really focused on the weight side things and scale back the running.
00:05:19.939 --> 00:05:21.560
What else did I want to talk about today?
00:05:23.360 --> 00:05:26.990
Sorry, I'm trying to look at my notes cause I did not make a ton of notes for today's podcast.
00:05:26.990 --> 00:05:29.540
I've just been thinking about a million different things.
00:05:30.139 --> 00:05:35.100
Oh, So if you're still with me I am having a sort of survivor.
00:05:36.660 --> 00:05:38.790
um, content creator, meetup.
00:05:39.300 --> 00:05:47.129
So, whether you're a stroke survivor, an ally, a caregiver, a friend, a family member you're involved in this show community anywhere shape or form.
00:05:47.550 --> 00:05:50.970
I'm going to officially announce that later today on social media.
00:05:51.600 --> 00:05:56.699
Hoping to beat some other stroke survivors who are content creators or aspiring content creators.
00:05:56.699 --> 00:05:57.540
And what does that mean?
00:05:57.569 --> 00:05:58.110
That means.
00:05:58.980 --> 00:06:00.180
You're somebody sharing your story.
00:06:00.209 --> 00:06:01.139
You're sharing the journey.
00:06:01.740 --> 00:06:06.660
Whether it's Instagram, Tik, TOK, Facebook, it doesn't matter where you're sharing it or how we're sharing it.
00:06:06.689 --> 00:06:15.089
But, you know, Kind of coming together collectively trying to meet other survivors, maybe collaboration, opportunities, networking opportunities.
00:06:15.660 --> 00:06:16.980
Really the sky's the limit.
00:06:17.009 --> 00:06:17.160
It's.
00:06:17.310 --> 00:06:19.110
It's free and open to the public.
00:06:19.139 --> 00:06:22.889
And again, I'll have links out to that later today and throughout the week.
00:06:23.459 --> 00:06:24.540
So that you come and join.
00:06:24.660 --> 00:06:27.300
Um, I'm putting it on free of charge.
00:06:27.329 --> 00:06:31.230
It's a virtual zoom event and I guess there'll be open to the first a hundred people.
00:06:31.860 --> 00:06:37.759
If for some miraculous reason, more than a hundred people sign up, I will try to extend the.
00:06:38.629 --> 00:06:43.310
The invite and we can always, if you can't make it, I'm hoping to have another one, if there's a good response.
00:06:43.310 --> 00:06:44.660
So I think that'll be really cool.
00:06:44.660 --> 00:06:48.259
Cause I know there's a lot of us creating content, but there's not a lot of us.
00:06:49.459 --> 00:06:56.980
I mean, we are connecting in the DMS, but I'm sure there's a lot of opportunities that you know, I'm hoping this will bring us all together as a community.
00:06:57.759 --> 00:06:58.300
And so.
00:06:59.019 --> 00:07:00.100
You know, stroke is hard.
00:07:00.129 --> 00:07:00.790
Stroke is brutal.
00:07:00.819 --> 00:07:01.899
Stroke is relentless.
00:07:01.899 --> 00:07:04.089
We've all tried different things.
00:07:04.089 --> 00:07:05.800
We all had different experiences.
00:07:05.800 --> 00:07:09.040
And I think the more we can collaborate and share and grow together.
00:07:09.699 --> 00:07:12.670
The better this community will be, because let's be honest.
00:07:12.699 --> 00:07:14.500
There's nobody really.
00:07:15.220 --> 00:07:18.639
Stepping in for the Shokes, whoever community and just saying, Hey.
00:07:19.149 --> 00:07:20.139
Let's all come together.
00:07:20.170 --> 00:07:21.730
Let's pool resources.
00:07:21.730 --> 00:07:28.449
Let's share what we've learned and yes, we all try to do it as creators sharing our journeys individually.
00:07:29.170 --> 00:07:30.129
But no, no.
00:07:31.089 --> 00:07:39.959
You know, like, there's a lot of groups and associations out there that are busy fundraising for research and things like that, but they're not really bringing.
00:07:40.709 --> 00:07:46.980
Actual survivors who have already left acute care and therapies and are really kind of left to their own devices.
00:07:46.980 --> 00:07:52.589
So that's what we're really hoping to do is meet other creators myself, and I'm hoping to help other creators.
00:07:52.589 --> 00:07:56.129
And if you aren't a creator yet, and you're thinking about being a creator.
00:07:56.790 --> 00:07:58.139
Because let's be honest again.
00:07:59.279 --> 00:08:01.709
I had my stroke in December, 2019.
00:08:01.740 --> 00:08:02.639
I was a developer.
00:08:02.639 --> 00:08:03.569
I worked in the web.
00:08:04.290 --> 00:08:07.319
I had a big presence on a number of platforms.
00:08:07.319 --> 00:08:11.970
And I just decided one day during my recovery to delete all social media.
00:08:12.569 --> 00:08:33.419
In hindsight that wasn't probably the smartest idea, but it allowed me to transform my, my new focus in, you know, Rebuild, um, My audience, because I think a lot of developers can give a crap that I had a stroke or still don't give a crap, even though I could probably show them or teach them a thing or two at this point.
00:08:33.419 --> 00:08:36.720
But You know, it's all for the best, I guess.
00:08:36.750 --> 00:08:39.000
Um, you know, it's a lesson I learned.
00:08:39.029 --> 00:08:40.919
I don't think everybody should do that.
00:08:40.919 --> 00:08:43.470
I think it's probably unwise looking back, but yeah.
00:08:45.139 --> 00:08:46.610
So, yeah, it's been a long journey.
00:08:46.639 --> 00:08:49.500
Like I said a ton of days, a ton of work, a towel.
00:08:49.679 --> 00:08:50.940
A ton of lessons learned.
00:08:51.419 --> 00:08:52.529
Through trial and error.
00:08:53.549 --> 00:08:55.649
You know, and like I said, stroke is brutal.
00:08:55.649 --> 00:09:01.559
It's relentless and, you know, I keep posting it, but I think somebody said, I can't remember who said this, but.
00:09:02.370 --> 00:09:03.570
Shout out to whoever said it.
00:09:03.629 --> 00:09:07.470
I can't remember who to attribute it to, and I don't want to get the wrong person, but.
00:09:08.190 --> 00:09:10.590
You really can't cheat the grind when it comes to stroke.
00:09:10.590 --> 00:09:11.309
Believe me, I.
00:09:12.149 --> 00:09:13.379
I tried early on.
00:09:13.379 --> 00:09:15.179
I tried to fix everything immediately.
00:09:15.210 --> 00:09:16.769
That's an impossible task.
00:09:17.320 --> 00:09:18.309
To put a mildly.
00:09:19.210 --> 00:09:20.139
You really need.
00:09:20.289 --> 00:09:24.159
There are some things that are true, probably for all stroke survivors.
00:09:24.190 --> 00:09:28.120
You need to assess where you're at in the beginning, where you want to go.
00:09:28.539 --> 00:09:29.769
What you want to fix?
00:09:30.580 --> 00:09:31.840
What you need to fix?
00:09:32.019 --> 00:09:32.919
Do you want to walk?
00:09:32.980 --> 00:09:33.759
Can you walk?
00:09:33.789 --> 00:09:36.940
Um, hands, a lot of people have hand issues.
00:09:37.389 --> 00:09:37.690
Fine.
00:09:37.690 --> 00:09:39.340
Motor skills becomes a real pain.
00:09:39.340 --> 00:09:40.990
It's still a pain for me, five years out.
00:09:41.799 --> 00:09:44.080
And if you listened last week, it's still a pain for Jason.
00:09:44.830 --> 00:09:45.940
And he'd send yours out.
00:09:45.970 --> 00:09:47.799
And so it never gets easier.
00:09:47.799 --> 00:09:48.789
It gets different.
00:09:49.750 --> 00:09:55.750
I think some of the things that I was thinking about over the weekend, or like, you know, a lot of us do figure out ways to.
00:09:56.649 --> 00:09:57.879
Improve and.
00:09:59.169 --> 00:10:00.909
Change our situation.
00:10:00.940 --> 00:10:03.820
And, um, but what's tricky too.
00:10:03.879 --> 00:10:20.110
What I was thinking about over the weekend was that like, You know, It's good to be independent and it's good to get to a place where you can do things, but also how much do you as a survivor, like compensate with the left side for the right side or vice versa?
00:10:21.039 --> 00:10:26.649
You know, and I think all of us who've been therapies have heard our therapists say, Don't compensate.
00:10:26.649 --> 00:10:36.070
Don't compensate, but you kind of have to, when you get out in the real world, because you have to do certain things, maybe you're a parent and you ha you're a younger survivor and you have kids.
00:10:37.389 --> 00:10:41.799
You know, you, you have a job, you have work, you have things you want to do just daily life.
00:10:41.830 --> 00:10:42.129
Right.
00:10:42.129 --> 00:10:44.019
We, we all compensate a little bit.
00:10:44.710 --> 00:10:45.850
Because it's necessary.
00:10:45.850 --> 00:10:46.960
We can't ask for help.
00:10:47.440 --> 00:10:51.429
24 7, but we can improve ourselves to continue to.
00:10:52.899 --> 00:10:55.330
You know, sort of not rely on the help as much.
00:10:55.360 --> 00:10:59.139
I think it's always good to have help and be comfortable asking for help.
00:10:59.169 --> 00:11:02.830
That's part of being a survivor is to get very accustomed to that quickly.
00:11:03.879 --> 00:11:05.559
And I sat on Bill's podcast.
00:11:05.590 --> 00:11:14.080
Bill G from over in Australia, for those that haven't listened, I was on episode 3, 27 with him on his show recovery after stroke.
00:11:15.820 --> 00:11:25.509
But yeah, you, um, You have to kind of figure things out and it's tough to figure out the balance between figuring it out and working on it.
00:11:25.509 --> 00:11:26.500
And it's all.
00:11:27.519 --> 00:11:28.720
Really tricky.
00:11:28.809 --> 00:11:31.960
Um, what else is going on about stroke?
00:11:31.990 --> 00:11:35.289
That it's it's, you know, like I said, I haven't had an event this week.
00:11:35.340 --> 00:11:37.590
Later this week, hopefully you can join us.
00:11:38.370 --> 00:11:39.240
That should be great.
00:11:39.289 --> 00:11:40.700
Hopefully a lot of people attend.
00:11:40.730 --> 00:11:43.669
I'm really looking forward to meeting a bunch of stroke survivors.
00:11:43.669 --> 00:11:46.009
It's just a casual chat, a hangout.
00:11:46.549 --> 00:11:47.960
It depends on how many people show up.
00:11:47.990 --> 00:11:49.190
We'll try to record it.
00:11:50.000 --> 00:11:53.210
But if you can't make it sign up anyways, so you can get notified of the next one.
00:11:53.210 --> 00:11:54.259
If you're interested.
00:11:54.799 --> 00:12:01.190
Again, it's all based on kind of community feedback and hopefully it's a, a promising event.
00:12:02.299 --> 00:12:03.440
And I know it's last minute.
00:12:03.440 --> 00:12:06.769
It's the week of, but you know, if you can make it, you can make it great.
00:12:06.799 --> 00:12:11.360
And if you can't, like I said, just sign up so that I know next time to send out an invite.
00:12:12.230 --> 00:12:14.750
Just to alert you that we're having another one when we do.
00:12:14.809 --> 00:12:17.299
So I think that'll be a really cool thing.
00:12:17.299 --> 00:12:20.779
And I think it's something that we need in the community as jokes of ours.
00:12:21.330 --> 00:12:21.659
Yeah.
00:12:22.740 --> 00:12:23.789
So what else is going on?
00:12:23.899 --> 00:12:25.009
Putting in a lot of miles.
00:12:25.009 --> 00:12:26.269
It's the holiday season.
00:12:26.570 --> 00:12:29.179
Definitely mindful of the holiday season.
00:12:29.720 --> 00:12:35.360
Trying to scale back on the miles a little bit and focus on some, some of the things that I want to.
00:12:36.259 --> 00:12:37.940
Wrap up before the end of the year.
00:12:37.970 --> 00:12:42.950
Um, try to get some things organized over on survivor science, really happy with the transition last week.
00:12:42.980 --> 00:12:44.210
I'm finally getting everything.
00:12:44.720 --> 00:12:49.340
The podcast officially over from lovable server over to server science.
00:12:50.090 --> 00:12:52.850
Getting more things out on again on Instagram Tik doc.
00:12:53.539 --> 00:12:57.740
A little behind on clips trying to organize some things, really looking to.
00:12:59.600 --> 00:13:02.590
Hop into the new year, fully foot on the pedal.
00:13:02.590 --> 00:13:03.580
Ready to go?
00:13:03.639 --> 00:13:08.440
Um, yeah, just, just, it's been I'll be honest, it's a tough week.
00:13:08.470 --> 00:13:12.470
I got a lot of schoolwork to finish up one of the final weeks of the term.
00:13:12.470 --> 00:13:14.809
So everything is due at the end of this week.
00:13:14.809 --> 00:13:16.460
That's definitely top of mind.
00:13:17.179 --> 00:13:21.049
Obviously, if you are, um, A stroke survivor.
00:13:21.049 --> 00:13:23.389
Who's unemployed in paying for your own health insurance.
00:13:23.389 --> 00:13:30.370
Now is that time to fund the kind of wrap up that before December 15th, I think depending on where you're going, who you use.
00:13:31.600 --> 00:13:35.679
Always an interesting dilemma navigating the health insurance world as a survivor.
00:13:35.830 --> 00:13:41.110
But especially in the early days, if you have trouble talking or can't talk or don't have a lot of help and support.
00:13:42.399 --> 00:13:44.710
That is a giant landmine.
00:13:44.740 --> 00:13:55.149
And I think most of us have learned if you haven't, you certainly will quickly, you have to advocate for yourself, find somebody who can help you navigate and advocate for you on your behalf.
00:13:55.179 --> 00:13:56.409
It's a really.
00:13:57.669 --> 00:13:58.990
Serious issue.
00:13:59.139 --> 00:14:02.919
And I'm not going to get into too much, but it's, it's a, it's a lot of work.
00:14:02.919 --> 00:14:07.059
It's literally like a full-time job, especially in the early years of recovery.
00:14:08.379 --> 00:14:15.340
Things that happen for seemingly no reason and things that happened for good reason and things that happen for absolutely no reason.
00:14:15.370 --> 00:14:15.789
It's eight.
00:14:16.149 --> 00:14:17.740
Like I said, it's a giant landmine.
00:14:19.090 --> 00:14:22.389
Um, but yeah, let's just, let's go back into the grind a little bit.
00:14:22.389 --> 00:14:24.039
I mean, people always ask.
00:14:25.000 --> 00:14:25.659
How do you do it?
00:14:25.659 --> 00:14:28.120
Or, you know, I post a lot on social media.
00:14:28.120 --> 00:14:29.860
I show myself as the example.
00:14:30.279 --> 00:14:33.820
Not because I'm trying to brag, not because of trying to show off none of that.
00:14:34.690 --> 00:14:43.840
It's really because I want to show other survivors out there that I'm leading by example and the things that I'm saying and things I'm doing are things that are happening in like, I'm not just.
00:14:44.350 --> 00:14:44.860
Touting.
00:14:46.659 --> 00:14:52.120
You know, Popal serous or, or, or, you know, needless stuff like I'm putting in the work.
00:14:52.330 --> 00:14:53.620
And I continue to do that.
00:14:53.620 --> 00:14:55.120
I've been doing it for five years.
00:14:55.720 --> 00:14:57.370
That's why a lot of people on Instagram.
00:14:57.870 --> 00:15:02.129
You know, I love some of the people that I've met on Instagram, especially like Jason, last week.
00:15:02.549 --> 00:15:08.149
From the episode, a full episode last week, it's it's inspiring to see other survivors doing it.
00:15:08.179 --> 00:15:10.039
And honestly, if.
00:15:11.029 --> 00:15:12.200
I know it sounds corny.
00:15:12.200 --> 00:15:14.480
It sounds cliche, but if it helps one person great.
00:15:14.570 --> 00:15:16.610
Um, if it helps somebody that you.
00:15:16.639 --> 00:15:19.129
You know, is on the spectrum of possibly having a stroke.
00:15:19.940 --> 00:15:26.509
Hopefully it helps them because God knows if, if I had any knowledge of just how hard this journey is.
00:15:27.379 --> 00:15:28.309
As you well know.
00:15:30.320 --> 00:15:32.120
I would've seen things a lot sooner.
00:15:32.149 --> 00:15:39.200
I just didn't think I was running out of time until I ran out of time and then became a statistic that I really.
00:15:39.740 --> 00:15:45.980
Part of a club that I'd never wanted to be a part of a, I'm happy to be part of it now, but only because I don't have a choice.
00:15:47.240 --> 00:15:49.309
And I think many survivors believe that.
00:15:49.370 --> 00:15:53.210
Um, and not every survivor is somebody that was in his better shape as me.
00:15:53.240 --> 00:15:55.610
There are many people who have hemorrhagic strokes for.
00:15:55.759 --> 00:15:58.370
You know, maybe stress, maybe seemingly no reason.
00:15:59.000 --> 00:16:05.929
A lot of stroke survivors, especially younger ones are typically people who have a heart condition that they were completely unaware of.
00:16:06.620 --> 00:16:09.139
It may have nothing to do with diet and exercise.
00:16:09.230 --> 00:16:10.580
I've met many who are.
00:16:11.539 --> 00:16:12.980
Runner's and CrossFitters.
00:16:13.610 --> 00:16:14.840
Prior to having a stroke.
00:16:14.909 --> 00:16:16.379
You know, it might've been stressed, but.
00:16:16.950 --> 00:16:17.460
Really.
00:16:18.269 --> 00:16:20.159
Seemingly, they weren't doing anything wrong.
00:16:20.190 --> 00:16:21.600
I'd met at another one last week.
00:16:21.679 --> 00:16:24.169
She also was part of that 20% where.
00:16:25.159 --> 00:16:33.440
You know, those statistics vary, but I do think, um, I think a lot of strokes and strokes through ours could have changed sooner.
00:16:34.399 --> 00:16:40.759
I feel like it's more like 50, 50, maybe that's unfair, but you know, It really just depends.
00:16:40.940 --> 00:16:47.899
And the statistics don't matter because once you're part of the club, Again, the club that nobody wants to have a part of we're part of the club, right?
00:16:47.899 --> 00:16:49.039
Your survivor for her life.
00:16:49.099 --> 00:16:50.210
That's that's kinda.
00:16:51.649 --> 00:16:58.940
The whole purpose of survivor science and the community behind survivors science called the center, which you know, is built and run by me.
00:16:59.809 --> 00:17:02.960
It's to help people manage daily life to get through those tasks.
00:17:03.028 --> 00:17:05.940
To, um, you know, I was talking about it earlier.
00:17:06.778 --> 00:17:09.269
I hopped in the comment section of somebody posts.
00:17:09.449 --> 00:17:11.519
And I did reach out to make sure it was cool.
00:17:11.519 --> 00:17:21.088
And of course, He was very kind and said, absolutely no problem, because he also believes he doesn't have all the answers and he couldn't really answer the question because he didn't have that same experience.
00:17:22.019 --> 00:17:26.460
But I was able to hop in and support that individual and just be like, Hey, here are the things that I tried.
00:17:26.460 --> 00:17:28.019
Here's here's what worked for me.
00:17:28.348 --> 00:17:29.759
I don't know for work for you.
00:17:29.759 --> 00:17:32.278
I don't know your exact symptoms, experiences.
00:17:33.900 --> 00:17:35.219
It's the tibialis machine.
00:17:35.250 --> 00:17:39.838
A lot of people talk about weakness in their foot and drop foot and strengthening that and a.
00:17:40.710 --> 00:17:43.528
Stretching it there's, you know, there's yoga tools.
00:17:43.559 --> 00:17:45.210
There's ankle weights there.
00:17:45.239 --> 00:17:46.349
There's the AFO.
00:17:46.380 --> 00:17:47.880
There's a lot of devices.
00:17:48.809 --> 00:17:50.039
There's a lot of stretching.
00:17:50.130 --> 00:17:59.190
Um, I will tell you the two biggest things that have helped me in stroke recovery with walking, I think have happened this year, which was finding that tibialis machine.
00:17:59.880 --> 00:18:00.778
It's made by Titan.
00:18:01.710 --> 00:18:02.849
There are weightlifting company.
00:18:02.849 --> 00:18:06.719
You can find the machine on Amazon and it's just a dual foot machine.
00:18:06.719 --> 00:18:07.829
So it's helpful.
00:18:07.888 --> 00:18:13.170
Um, It sorta just gives you more range of motion in that ankle to move it up and down.
00:18:13.349 --> 00:18:15.539
You can add weights as you can get stronger.
00:18:16.349 --> 00:18:26.250
And then the other thing that surprisingly I had not thought about, and nobody mentioned again, was starting with kettlebells and just doing farmer's walks this year, like literally in less than four months.
00:18:27.358 --> 00:18:29.909
Has tremendously improved my, my.
00:18:30.989 --> 00:18:33.690
A lot of things with my lower leg and calf and ankle.
00:18:34.500 --> 00:18:36.809
I mean with balance it's, it's really improved.
00:18:36.809 --> 00:18:38.159
So I've been pleased with that.
00:18:38.659 --> 00:18:41.358
But yeah, again, there's no cheating the grind.
00:18:41.449 --> 00:18:43.128
That's what I really want to drive home.
00:18:43.128 --> 00:18:46.459
This episode is that like, Believe me, I'm from Jersey.
00:18:46.459 --> 00:18:47.298
I would've tried.
00:18:47.298 --> 00:18:48.169
I did try.
00:18:48.169 --> 00:18:48.919
I tried.
00:18:49.818 --> 00:19:02.808
So many things, too many things in the beginning, and it was, it was not, not worth it, but like, I just wish I would have realized sooner rather than later that like, okay, it really is baby steps.
00:19:03.409 --> 00:19:04.699
There is a process.
00:19:04.729 --> 00:19:06.199
I do think therapy works.
00:19:06.199 --> 00:19:08.419
I think those are great building blocks.
00:19:08.419 --> 00:19:09.588
Do not get me wrong.
00:19:10.159 --> 00:19:13.818
Absolutely do think safe, smart, and work with your therapy teams.
00:19:14.749 --> 00:19:15.979
But just realize.
00:19:16.759 --> 00:19:19.368
There becomes a point you're going to hit plateaus.
00:19:19.398 --> 00:19:20.868
How do you get past those plateaus?
00:19:20.868 --> 00:19:22.398
You have to do the research.
00:19:23.088 --> 00:19:25.848
You have to look to people that have actual experience.
00:19:26.419 --> 00:19:29.778
Ask questions on social media, ask questions and the DMS.
00:19:29.778 --> 00:19:31.009
You can ask questions to me.
00:19:31.009 --> 00:19:31.999
You can email the show.
00:19:31.999 --> 00:19:32.838
You can email.
00:19:33.409 --> 00:19:37.278
Through the website, like it's, it's just keep asking questions.
00:19:37.429 --> 00:19:40.398
As somebody gets you an answer that actually works for you.
00:19:42.169 --> 00:19:43.788
I just know that it's hard.
00:19:43.878 --> 00:19:45.919
And again, I don't have all the answers.
00:19:45.919 --> 00:19:46.969
I certainly do not.
00:19:47.028 --> 00:19:49.818
I am very forthright about that, but I just think.
00:19:50.449 --> 00:19:53.568
The more questions you ask, the more you persist.
00:19:54.318 --> 00:19:58.308
Look for people that are having issues that you've had, they don't have to be strokes of hours.
00:19:58.308 --> 00:20:07.009
They could just be somebody like if you have an ankle issue, I look for somebody that broke their ankle and maybe they had a weird thing that nobody else has thought about or use that.
00:20:07.818 --> 00:20:08.808
May work for you.
00:20:08.808 --> 00:20:10.759
I mean, I saw it the other day strokes.
00:20:11.398 --> 00:20:11.939
Stroke.
00:20:12.449 --> 00:20:14.159
Sasquatch on Tik TOK.
00:20:14.189 --> 00:20:17.219
He showed a, a, a believer as a yoga.
00:20:18.239 --> 00:20:19.888
Foot stretching tool.
00:20:19.919 --> 00:20:23.338
I should find a link to the video in the show notes.
00:20:24.148 --> 00:20:26.128
But it was something I hadn't seen before.
00:20:26.128 --> 00:20:27.568
I've seen thousands of bands and.
00:20:28.439 --> 00:20:35.548
All sorts of resistance things, but I hadn't seen that particular thing and it looked really interesting and I, again, I think I'm okay there now.
00:20:35.909 --> 00:20:41.729
Probably could always use improvement, but, um, you know, I'm at the point at which I'm tired of buying tools.
00:20:41.729 --> 00:20:41.939
So.
00:20:42.538 --> 00:20:43.709
I'm just dumb buying tools.
00:20:43.709 --> 00:20:46.919
I think for now, for the time being until there, the really becomes a need.
00:20:48.419 --> 00:20:48.868
But yeah.
00:20:48.919 --> 00:20:54.858
This episode been a little long-winded, but again, I encourage you, um, 1,813 days into this.
00:20:54.888 --> 00:20:55.848
It's not easy.
00:20:55.848 --> 00:20:56.778
It is a grind.
00:20:57.378 --> 00:21:02.959
The sooner you realize that the sooner you put in the work, the sooner you just keep doing the things that are boring as hell.
00:21:04.189 --> 00:21:04.548
It.
00:21:05.568 --> 00:21:09.679
It does turn around if you put in the effort, but again, there's no magic pill.
00:21:10.368 --> 00:21:13.128
Nothing, nothing magical is going to happen one day.
00:21:13.128 --> 00:21:17.298
I mean, Of course, there's always the exception, but do not rely on that.
00:21:17.838 --> 00:21:19.038
Just keep putting in the work.
00:21:19.038 --> 00:21:20.088
That's all I can say.
00:21:20.838 --> 00:21:22.489
Anyways, we'll leave it there for this episode.
00:21:22.528 --> 00:21:29.159
Thanks for joining me on survivor science soundbite, and a while I will see you later this week, either Wednesday or Friday, for sure.
00:21:29.848 --> 00:21:31.199
Okay, bye.
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