Navigated to 73. Survivor Science Soundbite: Closing 2024 – A Year for Stroke Survivors - Transcript

73. Survivor Science Soundbite: Closing 2024 – A Year for Stroke Survivors

Episode Transcript

Welcome back to another episode of survivors.

In soundbites.

This is the final and well, final does mean last.

Final and last episode of 2024 of the server science podcast.

Today is Monday, December 30th, 2024.

And you could tell.

I am tired.

I had been on the phone all afternoon with various strokes to our groups and individuals.

I, uh, took a bit of a break last week.

I obviously did not release an episode on Christmas.

Hope you had a wonderful Christmas great holiday season.

Hopefully you're still able to enjoy it.

I know it is that we're day.

Is really where this year, it seems like nobody's doing anything on the 30th Monday.

After Christmas before new year's to our new year's Eve tomorrow and the new year's day, Wednesday.

We'll see if things get back to normal or for everybody's holding off until the sixth of.

2025.

Sorry.

I am out of breath.

I'm exhausted.

Yeah.

So I didn't release an episode on Friday.

I just got behind on things.

I just a lot going on.

I think every strokes are.

Can relate.

The holidays are overwhelming.

What else?

Uh, kids are overwhelming.

Life is overwhelming.

Just wasn't up to it.

Uh, I apologize.

But I did want to hop on and wrap up 2024.

It's been a really good year.

I think everything is finally in the right place for survivors science.

Everything is under the umbrella.

Had a lot of great calls this afternoon feel fired up about them.

But I thought we'd take the time today to reflect on a little bit of 20, 24.

And the transition from.

The lovable survivor to officially survivor science, which has been the rebrand big, important milestone this year.

Wish I had done it sooner, honestly, when I looked back and I talked to other creators even last year.

Everybody agreed.

It was time to build the brand this way.

However, I just wasn't ready for a number of reasons.

Uh, some technical, some not technical.

Some just frankly, I just wasn't sure about certain things.

That's the honest truth.

I think that happens to all of us.

I wasn't really, I mean, I guess I was stuck.

I didn't feel stuck.

I felt like things were rolling last year.

Things were good.

And at a high note last year, then I got a little stuck in the mud at the beginning of the year ramp back up in the spring.

And been doing pretty good up until, uh, honestly, uh, Padilla last week.

And I think it's just the timing I think is around the holidays.

I've noticed a lots of podcasters tend to take this time of a year off.

I've known that for many, many years.

A lot of people do.

Let's be honest.

Christmas Hanukkah, all on Kwanzaa, all kind of rolled in at the same time this year.

Not unusual, but not super common.

I think that I don't know how often it happens, where things line up quite the way they have this year.

But yeah.

That's that's where I'm at.

So, yeah.

Talking about that, uh, gratitude for the listeners, the guests.

The community members.

Survivor's science and the center is rolling right along.

If you listen to this Monday, December 30th.

You'll know that there are about 24 hours left to join the community for just a dollar.

You can join it for really.

I wanted to make it.

Available for any price, but the minimum I could charge is a dollar.

You can pay more than a dollar if you'd like you can pay full price.

Certainly I won't stop you.

But, uh, today was really interesting conversations.

That I'm looking forward going into 2025 on more collaborations, more.

Opportunities for individual survivors to create courses and cohorts to kind of bring everything together.

That was a big theme of Taiz calls.

How can we be better as a community?

How can we bring more voices, more creators together?

I think there's a lot of opportunity and I hope to do that more with survivor science in 2025.

I think.

Sky's the limit.

Uh, we talked, I've talked about everything from art classes, uh, survivor cohorts that are about accountability.

Creator content sections of the community.

Yeah, just really looking forward to it.

It's been a.

It's been a year of growth, a year of consolidation, a year of challenges, like every year.

Yeah, but some of the highlights, uh, some big guests, some good guests.

I enjoyed having guests on.

I think we'll do more of that.

I don't know how far we'll take it with guests, but I do enjoy.

Sort of the flexibility.

I like these little episodes on Mondays and Fridays, and I like having a main guests on Wednesdays.

I don't really.

No, a hundred percent words going, but I like the direction that it's headed.

And I think it's good for all servers.

I met a bunch today that are interested in being guests.

So I know.

Guests are definitely on the table.

I don't know.

We'll see.

I might experiment with multiple guests in the same shows.

I think that could be fun.

It needs to be moderated at handle.

Well, I think more than two guests at a time might be overwhelming, but I liked the idea of having more conversational guests and then.

You know, hopping on Mondays and Fridays and sharing what I'm doing, what I'm learning.

Huh?

And bring things that other people share with me inside the community, and then bring you to, to you as lesser.

You know, Sarah science.

I offer free resources and tools on the website.

This podcast obviously is not really sponsored as of right now.

That hopefully will change the 20, 25.

I think, uh, more people are becoming aware of a stroke.

They want to not only avoid stroke, but people unfortunately are becoming caregivers, family members and friends of stroke survivors.

And I think.

The more we can bring to the community as survivors, the more we can share.

The journeys as stroke warriors.

I think there's a lot of potential.

There's a lot of room for growth.

There's millions of us worldwide.

No reason why we can't have a voice.

And, you know, if some organizations are going to do their thing, Great.

Let's bring more together.

Uh, associate at the individual level, a lot of creators trying to build their brand as stroke survivors, help other Shokes survivors.

That is the one common thing.

They all have as stroke survivors is that we want to help other stroke survivors get through.

The hurdles, the obstacles and the battles that we've encountered and dealt with.

You know, it's it's, I wouldn't say fun is a word, but it is.

Enjoyable to go through the challenge.

However, I always say this, and I think a lot of people probably would agree.

It will be.

Amazing.

If there were things I learned sooner along the journey.

And anything I can do to help people.

Manage their stroke symptoms.

Uh, you know, I'm not a doctor, I'm just a person who's lived the experience.

I know how tough it is.

I know it can be relentless.

Exhausting tiring.

You know, I, I actually very luckily.

Seemed to have figured out a way for me to not really deal with as much fatigue, but certainly in year one and two, was I dealing with a shit ton of fatigue?

Honestly, I was dealing with a lot.

Too.

I didn't want to speak to anybody.

That's why I didn't really talk about stroke the first couple of years.

I think that is another common theme I've learned this year.

I've met a ton of survivors that are here.

5 6, 7, 8, 10.

12, even 15, 20 years out from their stroke and they.

They certainly have figured out some things.

And I think you're seeing more of those survivors want to give back to the community and then share what they've learned.

The hard lessons.

That they battled through.

Uh, they're still here to share their story and I think they want to tell their story and that's really kind of the direction.

I'm hoping to go with things in 2025.

So circling back to some highlights from episodes this year, I think in terms of guests, you know, uh, It was great.

We had a bunch on this fall for sure.

Uh, Uh, definitely was doing it solo most of the year.

Like, yeah.

Definitely since the fall, uh, bill Garcia, Emma's, you know, he has his own podcasts recovery after stroke.

Great episode really enjoyed it with bill.

It was 58 for me and on his, I was number 3 27.

But yeah, his is setbacks, his triumphs in neuro recovery.

You know, Bill's story.

If you don't recall, he had a couple of strokes and hiccups along the way.

Post-traumatic growth was the big thing that bill brought to the podcast that I, I, I have always kind of known about and talked about.

But I think he really highlighted it in a way I hadn't thought about before.

So I think that's really great.

And again, Extending guests already planned for 2025.

We'll talk about more of those in that in the coming weeks.

But yeah.

Bill reminded me just how powerful it is.

Not just to recover, but to inspire other RS others along the way.

Uh, topic came up today.

I have struggled with that.

I want to share my journey.

I think more stroke survivors do.

I don't want to.

Ever come off as bragging or.

Whatever.

You know, I take a lot of ownership over the fact that I put myself in the place.

To really have the perfect storm.

To be a young stroke survivor at 37, you have to work exceptionally hard.

In doing the wrong things to have the kind of stroke that I had.

Which again was an ischemic stroke.

I also have Ms.

I was not diagnosed with Ms until after my stroke.

Again, a very uncommon thing.

There are plenty of Survivors that are also, uh, Ms.

Orders, but typically the majority.

I've yet to meet another one.

Who's had the stroke first.

The Ms.

Second, generally speaking from my experience and the people that I've met to date.

They have Ms.

And then they later have a stroke that is not to shine a light on anything.

Other than that, my story is a little uncommon.

And why I'm passionate about sharing it.

And, and I want people to know how hard it really is and I get it.

I think that's the big thing.

Again, in talking with others, just even today.

Stroke survivors want to hear other Shokes virus share their story.

Why?

Because we want to know what worked for you.

We want to hear from stroke survivors that are individuals that have overcome different battles, challenges, and obstacles.

Share what you've learned, share what worked for you.

It may not work for somebody else, but at least they know that's an option to try because.

I've said it.

Ad nauseum therapies teams are great.

Speech therapists, occupational therapists.

Physical therapists.

Regular emotional, you know, uh, licensed psychologists are helpful.

Amazing coaches.

So many.

But unless you're really a stroke survivor.

It's hard to understand.

It's hard for caregivers to understand our perspective as survivors.

It's hard for caretakers to understand.

Even though all these teams and medical professionals are around it, they just don't really get it the way we get it.

And half the time.

Even survivor two survivor.

I speak to all that survivors now.

And sometimes I genuinely don't get it.

I understand fatigue, but I don't have that same level of fatigue that I suffered from the first two years.

I think running and exercising has really helped me.

People always ask me how I do it.

How did I do it?

Honestly, I do the best to share what I did and how I did it.

Uh, I talked about breath work.

That really was the big eyeopener for me.

It could have been, the timing could have been that I was two and a half years in, could have been that, uh, the breath work really helped.

It really changed my life.

It did.

And it sounds corny.

It sounds Hocus focused, to be honest with you, it sounds like.

He willing to say it now, it just it's, it's kind of unbelievable.

To me that I did not find breathwork until age 39 on my way to 40, where I started breath work.

And that really got me into running.

It's it.

Because running.

In terms of breath, capacity was no longer like an issue when I figured out how to breathe correctly.

And I figured out, okay.

Let's just try to go slow as a runner.

NAB purbrick technique still don't have great technique, but I figured it out a lot of what I chair and, and, and preaches.

I figured it out there.

The.

The breath work helped.

The running.

I don't know, you kinda just gotta Blease up the shoes and start.

I.

You know, you gotta be safe.

You gotta be smart.

I wish I could give you great wisdom.

I mean, find the right shoes.

Go slow.

Go safely.

Go a hundred yards and turn around.

Then, if that works go 200 yards, I mean, That's quite literally how I started.

I went from my house about a quarter mile to the cul-de-sac ran around the cul-de-sac and came back.

Made it all the way back.

The next day I woke up, I tried.

Do we get twice and I just kept adding a lap and a lap and a lap.

And this is not a myth.

By the way today as of today, December 31st, 30th on Monday, December 30th, 2024.

I crossed 14,000 miles of running since G October of October 6th, 2022.

Sorry.

I got a kidney into my mouth and I Yeah.

The reason I know that is because I use an app called Strava.

I use it relentlessly.

I use it on my cell phone.

I always have my cell phone on me when I run.

That's why I always wear a hoodie because I keep the phone in the cell phone and a.

The hoodie pocket.

When I run it, I do have watches.

I have, whoops.

I have Garmins.

I have a Fitbit.

People say that's insane to have so many devices.

Well, guess what?

I don't want to be in a place where I don't have my phone.

God forbid something happens.

Have some kind of device on you have people around you.

That's why I did not leave the neighborhood for a long time.

It wasn't until year two that I even considered going to the gym specifically.

G.

To run.

Frankly, because I got tired of getting soaking wet and Florida when it was raining.

I was already soaking wet from sweating.

I just didn't need the rain on top.

Anyways.

The enough about me, but I just wanted to mention that Another guest we had on, uh, was just Lopes.

Who is.

You know, somebody I talk to pretty regularly now.

Uh, he is a.

You know, stroke friend over on Tik TOK and Instagram, a little bit more than bill.

Bill's more of a Facebook, Instagram, YouTube.

Jason does Tik TOK.

Instagram and some others, but yeah, you know, Jason.

Another young stroke survivor like myself.

He's a little older, he's in his mid forties, but.

He's figuring out what he's he's you know, 10 years into his journey.

Next year and a really.

Has a great attitude, has a great mindset.

Really aligns a lot with mine in, in sort of that sports and, and may mixed martial arts.

TaeKwonDo.

Background, kickboxing.

You know, shows, he shows that, uh, You know, It's not just about your journey as a it's.

About sharing your journey and in a way that resonates with other people, he's got a lot to offer.

I know he's gonna I've.

You know, He's well on his way.

He's, he's like the rest of us that are Shokes Thrivers.

It's not quite as easy to always share and film the journey, but he's certainly.

Putting in a strong effort and a shout out to him and shout out to bell, both great, uh, content creators for stroke survivors.

I'm sure there are many more out there.

Had a great episode, a couple of weeks ago with, uh, Stroke brain.

Uh, why am I forgetting her name?

Hang on.

I'm going to look it up because I don't want to.

You know, but we also have some other guests we had on Dr.

Keith talking about Long COVID, which is something that is interesting.

Poor choke survivors.

A lot of people will recommend a guest for next year already.

A got one, uh, coming up this Friday, hoping to have a couple more.

Just had a great call with, uh, my new friend, Jan.

She's going to be on the podcast.

That was great.

Uh, Rachel, right.

Sorry, Rachel assay from.

Uh, recovery daily.

She was a great guest.

Uh, really aligned with some of the things that I spoken about and talked about being a former alcoholic.

She, and I have an interesting correlation being former alcoholics and stroke survivors.

But yeah.

Again, more guests plan for 2025.

I think I liked the frequency with which things are going and building.

The momentum.

Uh, so outside of the guests, we could talk about some of those, you know, some of the unique topics that I talked about, I did talk about psychedelics through recovery.

That actually came up on today's call the chemo.

But yesterday in the community, I think there is a lot of research that I am paying attention to.

And curious about.

I don't know if it'll be the magic pill.

I don't know if psychedelics work for everybody.

I don't know what's going to happen legally with them, but I am certainly interested as it happens to continue in the veteran space.

I do think some of that research correlates to stroke.

We'll see what happens there, but I will keep a close eye on that in the new year.

Uh, you know, and talked a lot about Leadership principles and applying it to personal recovery, you know, being accountable, holding yourself accountable.

Tiki charge and leading yourself, figure out what works for you.

It's interesting because again, You think in the states and in Canada, The majority of the people in north America have access to healthcare.

And the more I talk to people more.

I realize not everybody in the states and Canada has access to long.

Inpatient rehab.

And if they do.

It might've been six weeks in the beginning and they might be now 10 years out and they haven't been back to therapy or their insurance just changed and now they can get access to.

Ongoing therapy.

So.

That's why.

Talking to more therapists.

Uh, physical therapist, speech therapist, occupational therapist, any, any kind of therapist that works with stroke survivors is going to be more and more on my radar because the things that I've had access to, I know that I came from a situation where I had access tools.

Thankfully.

You know, but I've also gone against my team's wishes and done things that I maybe shouldn't have done because I just have had to figure it out for myself.

You know, life doesn't stop because you have a stroke.

It's I certainly wish I did.

I think a lot of us do.

But that's not reality.

If I'm being honest, you know, It's figuring out how do you balance work?

Life kids, family.

Loved ones, caregivers supporting other stroke survivors, building a business, working.

There's a lot of things.

In regular life, if you haven't had a stroke, so the you add stroke or Ms, or any other traumatic brain injury on top of that, and it just becomes more.

How do you manage more on top of more?

It, it, it honestly, it's a lot I am lucky.

I am 6 48.

I have a big personality.

I have a lot of energy for whatever reason I'm going to guess because it's running 20 miles a day now for the last couple of years.

But I get tired.

I have to recover every single night people ask, oh, how do you watch this?

Or listen to this while I listened to books, I read books.

I.

Watch a program while I'm doing recovery breath work exercises in the evening and doing the leg.

Compression sleeves that I happen to have for a.

A leg wound that was carried over for years, honestly just went away last year and I still had the machine.

So I do that.

That's how I recover all my legs.

Each and every day I stretch at night, I listened to the books while I'm stretching.

I don't know.

All I can say is that it is, you know, I'm very interested in leadership.

I talk about leadership a lot.

I could talk about that at nauseum and I D I forget.

Not everybody knows what I know.

Not everybody fixed how I think I just have never seen, I've never had another option for me.

Either.

I keep pushing and I keep leading by example or.

I don't and I just, I do, because it's, it's what I'm passionate about.

I just feel like I be given.

Uh, you knew.

Our unique perspective in life opportunity and that there that's, that's what I believe in That's why survivors science exists that, you know, I wish I did it sooner.

I wish I started things more.

More heavily.

I wish I got out of my own way.

Sometimes.

I wish I talked about it more.

I do need to talk about it more.

I'm really excited about where things are going.

Next year thinking about doing more cohorts, whether it's.

Using AI, utilizing AI learning.

Different techniques.

Uh, you know, I talked to, uh, somebody to say about potentially.

You know, a lot of stroke survivors get into art.

Uh, after stroke.

So thinking about adding, so our classes, you know, the, like I said, at the beginning, sky's the limit.

You know, if you're interested in collaborating, you're interested in running a cohort.

That is exactly why survivor science exists.

I want to be.

The community and source of information or resources for other stroke survivors.

But also build a platform.

For other survivors to have a place to come to, to.

To collaborate and build together because we're all on these calls.

We're on various groups and everything is separated and segregated and sometimes there's crossover, but sometimes there isn't.

You know, uh, talk to a great person today.

He had a really cool technique for getting up after a fall, as a stroke survivor.

Okay.

Not everybody does with that, but how many people do.

How many people he's like, oh, haven't you seen my video?

And I was like, well, where can we find it?

He's like, oh, I posted it two years ago on Facebook.

Well guess what?

I haven't gone back two years on Facebook on any individual's posts.

So that knee, like.

Helping him repurpose that content.

So it's being shared more regularly bringing it into a center.

Uh, V center, you know, for survivors science so that people can co watch those videos.

They can learn these things.

A lot of people are, are recording theirs, but they're not ready to share.

Maybe they need help writing the.

The social media posts, you know, I mean, I know I'm saying this over and over.

But the opportunity to collaborate and help out each other to build resources for us by us.

Is so important because.

I'll just say it, you know, American heart association, great organization, stroke.org, great organization.

So many organizations doing so many things, raising awareness, doing a thing.

With the mindset of helping stroke survivors, but really as a stroke survivor, it's not easy to find this stuff like.

So connecting the information to the survivors is really what's missing in this.

Broad.

Community and I'm sure it's not just north America.

I'm sure it's a worldwide problem.

In fact, talking to bill.

He said overall Australia, they're doing more, but it is still not enough.

And it's not their fault.

They're doing the best they can for door their organization.

I think most stroke organizations are doing things with the best of intentions.

But things get lost.

I mean, I heard about cyanic this year.

The neural sleeve.

Like I wish I had heard about that.

When I had my stroke, I mean, I know they were pretty new in 2019, so they may not have even been an option for me.

You know, and I figured out how to ReWalk and walk without it, but I gotta be honest.

I wish I knew about it because I probably would have been on board.

And signed up for it and participated and use the product.

And yeah, I mean, it's just, it's a product.

There are a lot more products coming out for strokes of ours.

Some I haven't even heard of that are all over the place.

And I would just love to get more of this community together.

And also support individuals doing their thing in their journey, whether it's on social media, whether they're running a website, separate from survivors science, There's opportunity to collaborate.

So for your somebody listening to this podcast and you want to collaborate.

I can't say it enough.

I probably do not say it enough, but you can.

They're not millions of stroke survivors listening to this podcast yet, but I hope that one day there is because this shit is hard.

I stroke is relentless.

I have spent hours and.

Hundreds of thousands hours.

Reading material rebuilding my brain, rebuilding my body.

I am not anywhere close to where I want to be, but I hope one day I will be.

And if I can help other people learn from my mistakes or my lessons or.

Just share things I've learned.

I've said it a bunch.

Botox didn't work in my hand and unfortunately, but it worked really well for me in my leg.

Again, the faster people find out about products and information and just access to resources.

And getting them all into a centralized sort of organized place.

You know, working with stroke awareness, Oregon.

Which is still so strange to me that they're on the west coast, I'm on the east coast and there's nothing in between.

Even, even, even great stroke.

Organizations like Mayo clinic and Cleveland clinic.

And there's so many clinics.

That are dealing with stroke.

I mean, I forgot his name.

Bless her up.

And in a lot of people up in Boston, Massachusetts, the Northeast.

Our dual cool things that want to help people.

But.

I feel like we're all trying to help people, but you know, we're not coming together as stroke community.

And again, that's the focus for 2025.

Uh, you know, there's already 27 minutes.

I want to keep it under 30.

So for me you know, curiosity and recovery is a big one.

Food.

Food habits.

Uh, I did, you know, I, again, I think cohorts are going to be a thing.

Within the community.

If you don't, aren't a member, if you are a member of the.

Uh, of, uh, the center by survivors size.

When you remember, you'll have access to every single cohort, every single call, every single thing that is scheduled.

However, you don't have to join.

Just know if you're not a member of survivor science and the center specifically.

It will be a paid option.

Uh, the paid option is great for people that are not long-term.

And, you know, and, and the thing is, this is really a community focus around stroke survivors, but you have to remember that includes caregivers.

That includes therapy teams.

That includes.

Family members of stroke survivors, friends, like anybody who wants to be a part of the community.

Can join for even today as little as a dollar.

Obviously the price goes up starting in the new year.

If you don't think you want to join it, you try the three months.

I mean, I talked about it today with somebody I've, I've spent a hundred to $200 on things that sometimes I haven't even used.

Come in, join the center.

Try to get it today.

If you listen today and you hear this join today.

You can join for as little as dollar a month.

You name your own price.

Trying to make it more accessible, trying to spread the word.

Get things out there because honestly I know if I don't start.

Say get more and more and more until you're sick and you're already a member.

That's the only way we're going to be able to spread the word and make it a fun place.

You know, stroke is not fun, but the purpose of the center is really to be fun and informative.

Because really what's the point.

If we're not having fun.

What are we doing?

I mean the information.

Yeah.

It's going to be good.

It is good.

I want to get more things in there.

I need more people to be able to give more information.

I mean, I don't want to just pound information there.

That is going unseen or unused.

I want to listen to members of the community and provide resources and tools.

That you have questions too, and, you know, bring in other resources.

I think this cohort thing going into 25 is going to be phenomenal.

Cohorts on content creation, cohorts on breath work.

People could always ask me about breath, work and running, going from walking to running.

How about getting rid of like, I mean, I don't know how you do a cohorted about this, but you know, Cohort.

I do.

Sorry, cohort on painting activities that stroke survivors can enjoy.

Post-stroke whatever.

Uh, groups, you know, share tools, share things are maybe you're not using a thing anymore and you want to get rid of it.

You could send it to somebody for a few dollars.

Again, community and growth is, is really the focus of 25.

Uh, you know, launching the center has been great.

Getting more people in there would be amazing.

I really hope to do that.

A survivor signs, the newsletter, the blog, the podcast.

You know, building this community has been one of the most rewarding parts of the year and really getting everything under the umbrella finally has been a big achievement.

So.

Again, I hope you've enjoyed this episode.

I know we're a little over 30 minutes, I guess.

I didn't talk all last week.

So I got a lot to say, but, uh, really looking forward to 2025, uh, couldn't be more excited.

You know, Hey, if, if you don't want to join the center, I get it.

You.

Join the newsletter.

You can go over to survivor science.com.

I click on the newsletter.

Uh, if you don't see that top seat, check down to the bottom of the step, laid down there and the footer.

Follow me on social media.

You got ideas.

Yo hit me up in the DMS collaborate.

Uh, you can send me an email.

We'll it.

Server science.com.

That's my personal email.

I will answer it.

In the order, which emails are received.

And really just, uh, again, looking ahead to 25, hopefully you had a good 24.

Hopefully we have an even better 25 at both as a community at individually.

And like I said, uh, I think, you know, more guests, more, more, more topics.

Bring me your topics, things you want to learn about things you're interested in.

Happy to share my, my particular take, find guests that have a particular take.

If you, if you have interest in that, any topic.

It's not taboo.

And he CA.

And if you're curious about, want to learn more about, let me know.

That's how I can best, uh, best serve this community again.

And so, You know, I'm running out of steam, but, uh, it is the end of 24.

And, uh, I think, uh, going in 2025, I'm really excited and I hope you keep asking questions.

Keep growing, never stop learning.

Stay curious, be passionate, be relentless.

And, uh, I think we will say till 2025.

That was a weird, I.

Kind of what's my voice.

All right.

See, in 2025 daycare.