Welcome back to another episode of survivor science soundbites.

This week, the topic we are talking about is.

That is a good question.

I don't know what the topic is really.

Last week we talked about ego.

And this week.

I'm talking about.

What it really takes kind of a look back on the last 1,813 days into stroker.

And Ms.

Recovery.

That is how many days it's been.

Since my stroke.

A little bit less for the Ms.

So subtract two months or 60 days from that number.

So 1700 and something.

But yeah, just been really doing a lot of stuff, trying to get more involved over on Instagram.

It seems like the community is solid over there.

Definitely, um, was.

Lazy getting over there.

I've been on Tik TOK for a couple of years, but.

Yeah, happy to be over on Instagram.

Um, you know, by proxy that kind of puts me off Facebook again.

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.

I've done a couple posts the last two days, um, on how long it's been.

So we're coming up on my five-year anniversary.

Later this month.

Since my stroke.

And yeah, kind of looking back on, what's taken the discipline, the hard work, all the things we usually talk about.

Um, But yeah, just really kind of, it occurred to me that, you know, A stroke.

Showcase tricky.

Right?

Everybody wants to know how to fix this or fix that.

And it's really, really hard.

You have to be as insane as I am to kind of.

Go through all the research, go through all the things, find all the things, tests, all the things.

It really, it could be a lot simpler.

However, because stroke is so unique to every individual.

It also is tricky.

There's no roadmap.

There is no solution.

But there are a lot of things that are important.

It's important to have discipline.

It's important to be focused.

It's important to.

Constantly assess and reassess.

Where you're at, what you're doing, where you want to go.

Are you on a plateau?

Are you through a plateau?

There's a million questions.

Um, and so, you know, that's the purpose of this podcast.

Try to answer some of them sooner rather than later.

Um, talk to another truck, whoever yesterday.

He's awesome.

Actually jumped into, I saw somebody, he posted something the other day.

I made a comment and then I, I saw right underneath my post.

And his reply.

I saw a question from a stroke survivor about ankle stiffness and getting better mobility in her ankle.

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.

Kind of, um, For lack of a better word, unfuck your ankle after.

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.

But the ankle was really stiff for a couple of reasons.

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.

So I was constantly wrapped in, basically imagine having a cast.

But flexible and having that on.

All the time for like three years.

I had like a shower leg cast, you know, there are very, it was rough.

I mean, it was, it was fine because I was able to wash and do those things, but like the wound itself was.

It took forever to heal.

They said, you know, I did everything right.

I had everything wrapped.

We tried all sorts of treatments.

We tried many different procedures.

Some things worked, some things didn't, it did close up a couple times, but then it would reopen.

I think I finally have gotten to a place where fingers crossed.

It's good to go for the long haul now.

Which is just an annoying side note on top of being a Stokes.

To I wrote and having Ms was that like wound.

I think it started as a bug bite back in 2018.

I didn't address it until 2019.

As soon as I addressed it, that's when everything kind of.

I started doing, addressing that.

Issue and concern in December of 2019.

And it was only a couple of weeks later, I would have the stroke.

So.

I don't think they're related necessarily, but it was a pretty good indication that I was in bad shape.

And in poor health at that time.

The reason it took so long to recover is, you know, some doctors say it might be the Ms.

Some have attributed it to being on blood thinners.

Whatever it is.

I'm glad I think it's finally done.

Like close for good.

But again, it's been a long, 1,813 days, 1,813 days since my stroke.

And I did a post to where I was talking about when I had my stroke.

I was 530 pounds.

Now down to around two 60, give or take.

And that really flex is yeah, I mean, not actually under two 60, but.

Kind of reluctant to be under two 60.

Tried to get back in the gym and lift some weights and really focused on the weight side things and scale back the running.

What else did I want to talk about today?

Sorry, I'm trying to look at my notes cause I did not make a ton of notes for today's podcast.

I've just been thinking about a million different things.

Oh, So if you're still with me I am having a sort of survivor.

um, content creator, meetup.

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.

I'm going to officially announce that later today on social media.

Hoping to beat some other stroke survivors who are content creators or aspiring content creators.

And what does that mean?

That means.

You're somebody sharing your story.

You're sharing the journey.

Whether it's Instagram, Tik, TOK, Facebook, it doesn't matter where you're sharing it or how we're sharing it.

But, you know, Kind of coming together collectively trying to meet other survivors, maybe collaboration, opportunities, networking opportunities.

Really the sky's the limit.

It's.

It's free and open to the public.

And again, I'll have links out to that later today and throughout the week.

So that you come and join.

Um, I'm putting it on free of charge.

It's a virtual oom event and I guess there'll be open to the first a hundred people.

If for some miraculous reason, more than a hundred people sign up, I will try to extend the.

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.

So I think that'll be really cool.

Cause I know there's a lot of us creating content, but there's not a lot of us.

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.

And so.

You know, stroke is hard.

Stroke is brutal.

Stroke is relentless.

We've all tried different things.

We all had different experiences.

And I think the more we can collaborate and share and grow together.

The better this community will be, because let's be honest.

There's nobody really.

Stepping in for the Shokes, whoever community and just saying, Hey.

Let's all come together.

Let's pool resources.

Let's share what we've learned and yes, we all try to do it as creators sharing our journeys individually.

But no, no.

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.

Actual survivors who have already left acute care and therapies and are really kind of left to their own devices.

So that's what we're really hoping to do is meet other creators myself, and I'm hoping to help other creators.

And if you aren't a creator yet, and you're thinking about being a creator.

Because let's be honest again.

I had my stroke in December, 2019.

I was a developer.

I worked in the web.

I had a big presence on a number of platforms.

And I just decided one day during my recovery to delete all social media.

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.

But You know, it's all for the best, I guess.

Um, you know, it's a lesson I learned.

I don't think everybody should do that.

I think it's probably unwise looking back, but yeah.

So, yeah, it's been a long journey.

Like I said a ton of days, a ton of work, a towel.

A ton of lessons learned.

Through trial and error.

You know, and like I said, stroke is brutal.

It's relentless and, you know, I keep posting it, but I think somebody said, I can't remember who said this, but.

Shout out to whoever said it.

I can't remember who to attribute it to, and I don't want to get the wrong person, but.

You really can't cheat the grind when it comes to stroke.

Believe me, I.

I tried early on.

I tried to fix everything immediately.

That's an impossible task.

To put a mildly.

You really need.

There are some things that are true, probably for all stroke survivors.

You need to assess where you're at in the beginning, where you want to go.

What you want to fix?

What you need to fix?

Do you want to walk?

Can you walk?

Um, hands, a lot of people have hand issues.

Fine.

Motor skills becomes a real pain.

It's still a pain for me, five years out.

And if you listened last week, it's still a pain for Jason.

And he'd send yours out.

And so it never gets easier.

It gets different.

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.

Improve and.

Change our situation.

And, um, but what's tricky too.

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?

You know, and I think all of us who've been therapies have heard our therapists say, Don't compensate.

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.

You know, you, you have a job, you have work, you have things you want to do just daily life.

Right.

We, we all compensate a little bit.

Because it's necessary.

We can't ask for help.

24 7, but we can improve ourselves to continue to.

You know, sort of not rely on the help as much.

I think it's always good to have help and be comfortable asking for help.

That's part of being a survivor is to get very accustomed to that quickly.

And I sat on Bill's podcast.

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.

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.

And it's all.

Really tricky.

Um, what else is going on about stroke?

That it's it's, you know, like I said, I haven't had an event this week.

Later this week, hopefully you can join us.

That should be great.

Hopefully a lot of people attend.

I'm really looking forward to meeting a bunch of stroke survivors.

It's just a casual chat, a hangout.

It depends on how many people show up.

We'll try to record it.

But if you can't make it sign up anyways, so you can get notified of the next one.

If you're interested.

Again, it's all based on kind of community feedback and hopefully it's a, a promising event.

And I know it's last minute.

It's the week of, but you know, if you can make it, you can make it great.

And if you can't, like I said, just sign up so that I know next time to send out an invite.

Just to alert you that we're having another one when we do.

So I think that'll be a really cool thing.

And I think it's something that we need in the community as jokes of ours.

Yeah.

So what else is going on?

Putting in a lot of miles.

It's the holiday season.

Definitely mindful of the holiday season.

Trying to scale back on the miles a little bit and focus on some, some of the things that I want to.

Wrap up before the end of the year.

Um, try to get some things organized over on survivor science, really happy with the transition last week.

I'm finally getting everything.

The podcast officially over from lovable server over to server science.

Getting more things out on again on Instagram Tik doc.

A little behind on clips trying to organize some things, really looking to.

Hop into the new year, fully foot on the pedal.

Ready to go?

Um, yeah, just, just, it's been I'll be honest, it's a tough week.

I got a lot of schoolwork to finish up one of the final weeks of the term.

So everything is due at the end of this week.

That's definitely top of mind.

Obviously, if you are, um, A stroke survivor.

Who's unemployed in paying for your own health insurance.

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.

Always an interesting dilemma navigating the health insurance world as a survivor.

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.

That is a giant landmine.

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.

It's a really.

Serious issue.

And I'm not going to get into too much, but it's, it's a, it's a lot of work.

It's literally like a full-time job, especially in the early years of recovery.

Things that happen for seemingly no reason and things that happened for good reason and things that happen for absolutely no reason.

It's eight.

Like I said, it's a giant landmine.

Um, but yeah, let's just, let's go back into the grind a little bit.

I mean, people always ask.

How do you do it?

Or, you know, I post a lot on social media.

I show myself as the example.

Not because I'm trying to brag, not because of trying to show off none of that.

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.

Touting.

You know, Popal serous or, or, or, you know, needless stuff like I'm putting in the work.

And I continue to do that.

I've been doing it for five years.

That's why a lot of people on Instagram.

You know, I love some of the people that I've met on Instagram, especially like Jason, last week.

From the episode, a full episode last week, it's it's inspiring to see other survivors doing it.

And honestly, if.

I know it sounds corny.

It sounds cliche, but if it helps one person great.

Um, if it helps somebody that you.

You know, is on the spectrum of possibly having a stroke.

Hopefully it helps them because God knows if, if I had any knowledge of just how hard this journey is.

As you well know.

I would've seen things a lot sooner.

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.

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.

And I think many survivors believe that.

Um, and not every survivor is somebody that was in his better shape as me.

There are many people who have hemorrhagic strokes for.

You know, maybe stress, maybe seemingly no reason.

A lot of stroke survivors, especially younger ones are typically people who have a heart condition that they were completely unaware of.

It may have nothing to do with diet and exercise.

I've met many who are.

Runner's and CrossFitters.

Prior to having a stroke.

You know, it might've been stressed, but.

Really.

Seemingly, they weren't doing anything wrong.

I'd met at another one last week.

She also was part of that 20% where.

You know, those statistics vary, but I do think, um, I think a lot of strokes and strokes through ours could have changed sooner.

I feel like it's more like 50, 50, maybe that's unfair, but you know, It really just depends.

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?

Your survivor for her life.

That's that's kinda.

The whole purpose of survivor science and the community behind survivors science called the center, which you know, is built and run by me.

It's to help people manage daily life to get through those tasks.

To, um, you know, I was talking about it earlier.

I hopped in the comment section of somebody posts.

And I did reach out to make sure it was cool.

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.

But I was able to hop in and support that individual and just be like, Hey, here are the things that I tried.

Here's here's what worked for me.

I don't know for work for you.

I don't know your exact symptoms, experiences.

It's the tibialis machine.

A lot of people talk about weakness in their foot and drop foot and strengthening that and a.

Stretching it there's, you know, there's yoga tools.

There's ankle weights there.

There's the AFO.

There's a lot of devices.

There's a lot of stretching.

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.

It's made by Titan.

There are weightlifting company.

You can find the machine on Amazon and it's just a dual foot machine.

So it's helpful.

Um, It sorta just gives you more range of motion in that ankle to move it up and down.

You can add weights as you can get stronger.

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.

Has tremendously improved my, my.

A lot of things with my lower leg and calf and ankle.

I mean with balance it's, it's really improved.

So I've been pleased with that.

But yeah, again, there's no cheating the grind.

That's what I really want to drive home.

This episode is that like, Believe me, I'm from Jersey.

I would've tried.

I did try.

I tried.

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.

There is a process.

I do think therapy works.

I think those are great building blocks.

Do not get me wrong.

Absolutely do think safe, smart, and work with your therapy teams.

But just realize.

There becomes a point you're going to hit plateaus.

How do you get past those plateaus?

You have to do the research.

You have to look to people that have actual experience.

Ask questions on social media, ask questions and the DMS.

You can ask questions to me.

You can email the show.

You can email.

Through the website, like it's, it's just keep asking questions.

As somebody gets you an answer that actually works for you.

I just know that it's hard.

And again, I don't have all the answers.

I certainly do not.

I am very forthright about that, but I just think.

The more questions you ask, the more you persist.

Look for people that are having issues that you've had, they don't have to be strokes of hours.

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.

May work for you.

I mean, I saw it the other day strokes.

Stroke.

Sasquatch on Tik TOK.

He showed a, a, a believer as a yoga.

Foot stretching tool.

I should find a link to the video in the show notes.

But it was something I hadn't seen before.

I've seen thousands of bands and.

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.

Probably could always use improvement, but, um, you know, I'm at the point at which I'm tired of buying tools.

So.

I'm just dumb buying tools.

I think for now, for the time being until there, the really becomes a need.

But yeah.

This episode been a little long-winded, but again, I encourage you, um, 1,813 days into this.

It's not easy.

It is a grind.

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.

It.

It does turn around if you put in the effort, but again, there's no magic pill.

Nothing, nothing magical is going to happen one day.

I mean, Of course, there's always the exception, but do not rely on that.

Just keep putting in the work.

That's all I can say.

Anyways, we'll leave it there for this episode.

Thanks for joining me on survivor science soundbite, and a while I will see you later this week, either Wednesday or Friday, for sure.

Okay, bye.