Episode 70: No Two Spinal Cord Injuries Are Alike

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Welcome to Demand and Disrupt, a disability podcast. I am your host, Kimberly Parsley.

And I'm your co host, Sam Moore. Welcome to the second episode of Blabbing in the New Year. We are.

You just said blabbing in the New Year. Okay, guys, I just go tell our listeners. The reason we are laughing is because this is the third time that we have tried to record this.

Yes, I was thinking about our technology snap folks that we've had Blabbing in the bluegrass. Ladies and Gents is my other podcast, but I'm also glad to be a part of this one with Kimberly. Yes. Due to the constant mysteries of technology in 2026, this is our third take.

Our third day, and we are tired and slap happy. So y' all gonna have to forgive us.

I'm gonna have to go get another cup of coffee.

Oh, my goodness. I tell you, we truly do have a really wonderful show. So we. We will persist, Sam.

Yes, it's all about just keeping on.

Keeping on 100% demand and disrupt. That's the show you're listening to, folks.

Is it really?

It really is. Yes, it really is. This is the second one of 2026. It is a disability podcast.

January is flying right by, and it's flying just about as fast as technology is changing, apparently.

I tell you what, February is going to be here and we're still going to be trying to get this show up. We have not been watching.

Next Halloween, we might have, you know, a brand new show from. And it'll be nine months in the.

Works, I'm telling you, which will be a shame because I did a fascinating interview with Dr. Sasha. Re is a professor at the University of Kentucky. He's a researcher, and he is the co founder of the Kentucky Congress on Spinal Cord Injury. And he talks a lot about the research that's being done, about some of the unique challenges that people with spinal cord injury face, how spinal cord injury is not one thing like it. No two spinal cord injuries are alike. So it was fascinating.

And yeah, we can all learn a lot about, you know, the different types of spinal cord injuries and. And causes of those injuries and. And nothing like a professor to, you know, clear up all that confusion for us.

He would be an awesome professor to have had. He really, really would. He?

I'm sure. I'm sure his students love him.

I bet, I bet.

And he.

He's engaging now. I would never have had him because, you know, neuroscience and Stuff. Not. I'm not that smart. I never would have been in his class.

It wouldn't have been my thing. Not my major either, but unless we just wanted to take him for an, you know, our mandatory science class or whatever.

There you go. We could audited, right? We could audited.

We could audit it.

Yeah. Hang out with Dr. Revsky. That would have been fun.

Maybe.

Maybe get another A to add to our college course list. Because I know we both racked up a ton of A's. I mean, if either one of us made Bs in college, Kimberly, they were just barely Bs.

I see. So your New Year's resolution is to lie more? Is that what I'm hearing?

I'll tell you what, I'm getting better and better at it. So it seems. But you were. You were telling me, Kimberly, off air, that you actually make very thorough notes about your New Year's resolutions, don't you?

Oh, no, we thought we were on the air, Sam, when that was happening before, we thought we were on the air, but.

Oh, yes, we thought we were.

So, yes, I. New Year's resolutions, I do love them. Thank you for segueing there, Sam, and trying and just. I just couldn't make it happen. But, yeah, I. I actually write down my New Year's resolutions, and people ask me how many I have, and I don't know, I just. I just have a bunch, and I actually pin them in a notes app in your phone. You can, like, pin a note to the top, and I have it pinned to the top, so I can always go back anytime and look and see how am I doing on my New Year's resolutions. What were they? Maybe I don't remember.

And if you forget, you know, and if. If. If you neglect to follow them, you know, your pleasant or maybe unpleasant reminder is never far off.

Yeah.

But even then. Even then, if you decide not to. To follow through with one, it's interesting to look back at, like, hey, this was important to me in January, but now this is not so important in, you know, July or whatever. So you're just like, okay, I'm. I'm not going to do that.

Sometimes as. As the calendar. As the calendar changes, your priorities change.

Exactly, exactly. And one of my priorities this, this year, as of now, is to do a little work on editing the. The podcast, like, learning how to use the editing.

So the technical side of things.

The technical side of things, I am looking forward to learning about that. So that's one of them. What about you, Sam?

Well, you know, I Didn't go real overboard on the New Year's resolutions, and I generally don't. But, you know, I have renewed some commitments, one of which is obviously to my blabbing in the Bluegrass Podcast, considering that's how we started this, this take of the episode. But, but I'm also continuing my commitment to demand a disrupt and this, this great collaboration with, with my friend Kimberly Parsley and all of our great guests that we've developed rapport with since, since we started this thing. But, you know, our buddy Eldon, Eldon Kaiser from Cave City, Ky. He reminded me a few weeks ago that if you don't make any New Year's resolutions, you can't break any New Year's resolutions. So, you know, a little food for thought there. If you don't make them, you don't break them.

But it's not like there's a New Year's resolutions police who's going to come around and, you know.

No. Unless you, unless you want to take on that role, Kimberly.

Nope. Nope, I'm good. I think you should shed anything that isn't working for you. If you start something and it's not working for you, I think. No, just be done with that. If it, if it doesn't mean that much to you anymore, just be done with it. I'm perfectly, perfectly fine with that.

We won't thank anything less of our faithful listeners if they decide to drop their New Year's resolutions or if following them just doesn't quite work out. As long as you keep listening to us.

True. You must listen to us.

That's, you know, we definitely should send a demand and disrupt listening police around to make sure that, you know, folks stay tuned in.

No, and, you know, I was looking at. I think I told you I would look up some of the origins of New Year's resolutions. And, you know, there's. There's not a lot there except that it appears they can go all the way back to, like, Babylonian times.

Oh, they were making resolutions that far back, huh?

Yeah, like at the, at the beginning of year. Of course, a New Year's resolution is really just about time and improvement. Right. So it's. Yes, very much part of human nature. Right. Just. Just to think along those lines mean.

We should all strive to better ourselves. But, you know, just because we don't follow our New Year's resolutions verbatim doesn't mean that we're not getting better.

You know, you might, you might have decided to work on something else that you didn't even write down.

Yeah.

And people do that.

Like I told Kimberly.

Yeah.

I believe either off air or the first time we attempted to record this, you know, you can. To me, in my mind, you can make a New Year's resolution anytime in the month of January, right on up through the 31st.

Yeah, 1. 100%.

I think February is a little late, but January, you know, first month of the year, you got the right to make a resolution.

One of the only health resolutions that I was thinking about is to not eat candy.

Not eat candy.

Yes.

At all.

Right? At all. Yeah. Like cutting out candy. Not. Not like cookies or baked goods or whatever, but like, just candy.

Because it'll be broken on Halloween. I can just.

Exactly. But because it's so processed, you know, it's just something. No judgment on, you know, anyone who eats candy. I eat candy. Eminem's are literally a food group for me, but M&Ms.

For me.

And you said you. You said February, and I was like, oh, fellow February. That's when the Valentine's candy comes out. I love Valentine's candy.

Yeah, that's right.

And I was like, resolution, no candy crap. So already I can see I'm not going to get very far with this one, y'.

All. Yeah, we might not even make it a month with that no candy thing.

No.

And then, you know, next month, I mean, you'll be eating Valentine candy hearts and what have you. And then, you know, candy. And then Easter. Yes, yes. Easter candy. And then, of course, October, you know, you can't let. You can't let October go by without candy corn.

Oh, my God. Yeah. See, so it's already. It's. It's already. Now you're making me think, do I still have candy corn anymore?

You may be eating candy corn tomorrow now. Yeah. Yeah. Don't hold yourself to that no candy thing, because I just got a feeling. I mean, I love you and all, Kimberly, but I just. I just don't have much faith that this no candy venture is. Is going to work out for you.

I. I feel like you're probably right.

I just got to be realistic on that one. But. But anyway, you know, your sweet tooth screams, too. You realize that, you know, the longer you go without candy, it just screams louder. Louder. You just can't ignore it forever.

I think you're probably right. Yep.

Yeah.

Sam bringing the wisdom today, right?

Always. At least I like to think so.

Well, something else that you're going to be bringing, Sam, is that you're bringing yourself to a future future live webinar that we're Doing for the release of Tina Jackson's book, My Silence Roars.

Book release.

I know it is. We are doing a book release party alive. We're doing it live. We're going to be asking Tina questions. Sam and I'll both be there. It's going to be so, so exciting. Dave Mathis, our executive producer, is going to be there. Tina and her husband Mark, of course, are going to be there. And it is on February 2nd at 1pm Central, 2pm Eastern. I will put the link somewhere. And here's the thing. We're still working on getting. Because you're going to have to register for this event because it's special. So you're going to have to register for this event. And we are working on getting the link up now. So I don't even know if we will have it by the time this episode drops. But keep looking. Watch our Facebook page. Watch all, watch all the normal channels because we will put it out there regardless.

You, you will have plenty of time to register yourself.

You will, and you'll want to do that because we are going to be doing a drawing, maybe a couple of drawings we don't even know, for a copy of Tina's book, a free copy of her book My Silence Roars. It's her memoir about growing up as a disabled woman.

Can I be in the drawing?

Yeah.

Like, I don't like the vibes I'm getting on that one, Kimberly.

I was gonn. Yeah, of course. But then I don't know. That might seem not fair if you did actually win, Sam.

Yeah, so some folks might take issue with that. So.

Yeah, so, but we got print copies. We got electronic copies for screen readers. We'll have an audio copy probably, but it's not ready yet. There, there's a whole thing where you have to have your print copy out first. So we don't have audio copies yet, but we will have.

That's, that's in the works. Right?

In the works. And I'm sure we will get the Kentucky Talking Book Library to do that as well. To do a recording.

One of their fabulous readers.

Yes. So, so good. We will do that.

And because we're all about equal opportunity here on demand of disrupt.

Yes, we are. Well, you'll want to sign up, register. It's going to be so much fun. I'm excited. Yeah, I know, right? And that's on February 2nd. So.

Yeah, Monday, February 2nd. That will be on a Monday.

So, yes, Monday, February 2nd. If I said January, I'm wrong. It's February.

I think I almost did, too, but yes. Feb, two, right? Two, two. Remember that.

It will be so much fun. We are looking forward to it. It's kind of going to be a party. I'm excited.

It will are. We're going to have cake and punch.

Well, I am. I don't know about you, but yeah.

I guess I'm gonna have to, I'm gonna have to furnish it. Maybe use it.

Bring your own. Yeah, bring your own cake and punch.

Your own cake and punch.

Exactly. Exactly.

Oh, gosh.

It'll be fun.

You all go ahead and get your beverage and snack of choice to pull up a chair. Listen to my interview with Dr. Sasha Rabjevski. I am joined today by Sasha Rabjevski and he is a professor and researcher at the University of Kentucky. And he's going to talk to us about spinal cord injury and living with that and the Kentucky Congress on Spinal Cord Injury. Welcome, Sasha. I wonder if I am eligible to join that club. I know probably not getting a lot of people wanting to bang down the doors to that club. I had a surgery that at C2, C3, that area to remove a tumor. So. And I can't, I don't have the use of my left hand. So does that qualify as a spinal cord injury?

Well, of course it does. And I'll be honest with you.

And it's not well known because of our, we're kind of rural, but we are open to anybody. And when, I mean anybody, people who care about spinal. If you have a caregiver, if you.

Have somebody who has multiple sc, if you have somebody who's in a wheelchair.

For whatever reason, that's what the Congress is all about. It's not necessarily for sp. I know, I know it got tagged because Jason and I are spinal cord injured individuals. But we realize that you can't, you have to cast a wider net to get community involvement. So yes, you would definitely be welcome. But here's the catch 22, Kimberly. And I'm glad we're bringing this up is because after my good friend Jason Jones, who was president of the Congress, passed recently, just months ago, we are.

Kind of in a quandary.

We don't know what to do with the Congress because it's not funded, it's.

Voluntary and we've kind of lost, not lost, but through, through the inner workings of just life and things of this nature, people have drifted off and it's.

Hard to get volunteers to do this. So the mission of the Congress is.

Basically to bring like minded people together.

To Be able to.

If, for instance, I mean, Jason and I started the Congress because we wanted.

To make restaurants be accessible for wheelchairs.

That's how we started it. And so in essence, then.

So I'll let you. Let you take over.

We are open to everybody. There's.

We have a Facebook page.

We do not have a website. But I am in the process right.

Now of getting all the former members and including now people in Louisville area to come up and create another organization that would help us and maybe that we could actually apply for funding by getting a 501C3 status.

Okay, I see. You know, it's interesting, those volunteer organizations like that, they do kind of. They do kind of ebb and flow, don't they?

Yeah.

Well. And Kimball, I think you would understand this more than anybody. It takes. It takes effort. It takes people. They're not getting paid.

They have to do this volitionally. And especially if you have. If one has a disability, on top of the fact that they have to go to work and on top of the fact that they do volunteer work for their cause is a very big ask. I think in many cases it's true.

And, you know, we're tired.

Yeah, right. Well, you know, I don't know about you, but I hearken a lot to this quote that I heard recently from.

Nonprofits that were talking to NIH saying.

That they, in particular mothers and parents.

Are tired of storyteller fatigue. They just have. They have storyteller fatigue because they're saying the same things and they're asking for.

The same things, and yet nothing is being done. And it's a frustrating thing. So I guess I always can. Like when we used to have meetings and Jason and I would gather people, it's like herding cats. And once you. Here's the catch 22. When we put free T shirts or free paraphernalia or that there's going to be vendors there, people will show up.

But if you say, let's have a.

Meeting because we want to do something, there's no.

There's no buy in. You have to have incentivization.

Like. I like the term. Whether it's in science or. Or in. Or. Or in nonprofits, you have to have.

Incentivize people to do things that they.

Normally do or they get paid for.

Right, Right. I call it. I've seen it referred to as advocacy fatigue.

Oh, yes.

You know. Yeah. And it's all the same thing. And it's. I mean, I look in my inbox, if I see one more group wanting Me to talk to my congressperson. I. I swear, I mean, it's so important, but it's also exhausting.

Okay. I've gone so far as to like, literally write out letters that all people have to do is put their signature in it. And they don't do that.

No, no.

Very, very difficult. And. And you can't force it because you want them to be encouraged to do it. You don't want them to feel, you know, you know, pigeonholed into doing something like that. So, yeah, it's a very. It's a very challenging thing to say the least. And especially when it comes to the term advocacy. I'll be honest with you. I particularly don't fancy that term. Only because it just reminds me of what we're complaining about. Right. Going up to Congress and asking. I call it activism.

I like to activism, activist.

Just think about it.

I do it and I get in trouble sometimes, but it's better to ask for forgiveness than to plead for years for permission because is it going to come?

Yeah, yeah, that's true, 100%. But, you know, I feel like 2026 is a year. We're going to solve it. We' going to fix discrimination. That's. That's my goal.

So darn it, we need to have those kinds of goals.

I tell it, what could go wrong? What could. How can we not right?

You know, if you don't aim high, you're never going to get the lower targets and fruits.

So that's the way, you know, it's almost the tagline for the show at this point. Go big or go home. That's how we roll here. So we're going to do this. So tell me about the Congress and what they do.

So actually, the Congress was formed in.

2013, and Way Jason and I just did it was. Well, we kind of asked around, guys, gals, you know, wheelchairs and people with disabilities. We need a Congress. People like, where's a con? No, we're not politicians.

I said congress, if you look it up, there were just a bunch of.

Old men, you know, middle age men that kind of joined together and they formed it. Let's do this. So we formed our own chapter. We formed our own mission visions, and.

Then we even had secretaries and appointments. And we started to host what was.

Called the annual Kentucky Spinal Cord Injury Research Conference. And we would every year hold the.

Conference, typically in Lexington area.

Once we did it outside, closer to Frankfurt.

And we try to incorporate people with Louisville, but it's difficult.

People like Dave Allgood and folks like that up in Louisville and people like.

Yourself, for instance, Jenny Smith, who you've.

Interviewed before, she's a good friend of ours.

And she's not.

She's not really part of the original Congress, but she's also part of our group because she's brief, as it's the Louisville area.

And so what we do, we gather together.

We get.

The other thing is this, is that.

Jason was really good as mine now.

On fundraising and get sponsors.

So we.

We did not get paid.

We had no income.

But we used to get sponsors to sponsor our.

A yearly meeting in which the vendors.

Would show up, the sponsors would show up, they have tables, and then we'd have assignments.

And we had. And then we also. Assignments, in other words, we'd have showcases and things during the day, and we.

Would bring in speakers. Every year was a different theme, usually.

Around accessibility or even sexual kind of difficulties with. With. With disabilities, things of these natures. We really kind of opened up every year and we had a different theme. And we did that for 10 years.

And then, unfortunately, I got sick.

Jason got sick.

And then we still ran it, and.

We still have a web Facebook page. But we, you know, especially with the passing of Jason, that there's like a torch that needs to be carried. And it's very difficult to ask, much less get people to kind of carry it on, because a lot of people like, no, there's no way I could do that. When really it was like just ad hoc. We didn't do anything. We just kind of like got together and tried things. So.

And therefore the Congress still forms as.

My own hub, as a dissemination hub. I actually have a mailing list which I also have a weekly email letter that I send them all about spinal cord injury, either research, advocacy or. Or. Or actually resources, things that you can go to, webpages that'll help people, and it cycles so that a new.

And I could actually, with your permission.

Get you on the web or absolutely do that.

Because again, it is spinal cord centric, but it involves really a lot of state disability issues.

Because that's what we're all talking about here is access, equality.

Yeah. It may look different for each of us. You know, that's right. We're all looking for the same thing, which is just equality. Right, Right.

Well, Kim, it's interesting that we had.

This moment because I had a faculty meeting yesterday in which the university is now implementing and we have to.

And we understand why, but all of slides and all of our presentations that.

We give to students now have to.

Be ADA Compliant, which doesn't mean just. It has to not even be, just not, for instance, braille. But if you give an article, it has to be readable by the person.

Who is either visually or auditorily impaired, which is really hard for us.

But then again, I'm kind of saying to myself, wait a minute, you can't struggle with this.

This is your, this is your own mantra. You have to be able to.

But again, what I'm saying is that accessibility from the standpoint of a person.

In wheelchairs getting into buildings, but then.

Once you're in the buildings, you have.

To factor in all the other disabilities, like the deaf and the blind, which really, to me are at the back of the bus in this whole thing.

Right, for yourself.

I don't know what your challenges have been, but blindness is a really difficult disability to navigate with the infrastructures that we have, just like building codes and things of this for people in wheelchairs. It just wasn't designed for us. And yet we've had the ADA out on since 19, you know, was it 1991? So it's, it's, it's, it's quite amazing.

To me how Even, even into 2026, we are still doing things at a.

Snail'S pace with regard to even putting up new buildings or that are not in violation of, of, of ADA infractions.

It's amazing to me how many bids.

Get approved when they're not even compliant with the ada. And this is all across campus, by the way.

Yeah, I, I hate to hear that. I'm not surprised to hear that, but I hate to hear that. Yeah, yeah, but, yeah, it's true. We have to, we have to be thinking about people with other disabilities. You know, I hear like when the smart speakers came out, and this is going to open up so much stuff and it's going to make things more accessible for me. And then I think about people who are hearing impaired, the, the deaf and hard of hearing community. And, you know, we, we can't leave those folks behind. We, we need to bring everyone. Because, you know, as I know, just because you have a disability does not mean you won't get another one.

Right? Yeah.

So you may think that you're looking out for yourself, but not you, you know, as in Sasha, but the collective. You. If, if you're looking out for one person, you're only looking out for your present self, but your future self may be very different.

So, Kimberly, I'm telling that to my colleagues. I'm approaching 60 years old. I'm like, guys, you're going to be using this stuff that I'm using pretty soon.

Yeah, right, exactly. I hear people say, well, I'm not disabled. I'm like, well, not today.

Right, right. Hey, only one bike accident or one trip away from speak of joining the club. Right? Somehow.

Exactly. Yes, exactly. It could happen at. And I know people don't want to think about that. I get that. I don't, I don't want to think about extra disabilities either. But, you know, it's a reality.

It's.

As one of our co hosts, our disruptor in chief, as we call her Carissa, says disability is natural. It is a just part of the human condition. So now you mentioned a bike accident. That is what led to your spinal cord injury, is that right?

Yeah, I was in a motorcycle, I was a passenger on a motorcycle in 1985 in the hills of West Virginia. And I wasn't wearing a helmet. And I got the worst end of the deal when we got to an accident. And when I woke up out of a coma back in 1985 in Georgetown Hospital, the accident happened in West Virginia, but I was flown to Georgetown. When I came out of a coma was the first paraplegic I ever met. I didn't know what paraplegia was. My dad was floored. Nobody understood what was going on. And that was my new introduction to disability community.

Wow. Dropping right in the deep end, huh?

Yeah, exactly. You know, and, and, and again, it was one of those things where you Prime. I was 19 years old, already in college. I mean, playing a college football. It's one of these things where you, you're kind of like, you know, you're invincible. And then all of a sudden you're more dependent than you were when you, when you had diapers on, you know, Right. Your parents, loved ones and your sister, you know, your siblings and things of that nature. It becomes a different ball game and the, your aspirations are probably still there, but you got a whole different set of playing cards now.

Yeah. So. So did the trajectory of your life change at that point or did you stay the course you were on?

Well, it's a good question. And I, I think of thought about.

This well enough to say that for sure that the accident changed my course. I would not be a professor of neuroscience had I not had an injury. It wasn't in my. I was a pre med major, but I had a 2.7 average. I wasn't doing. I wasn't going to, you know, go off to any kind of glorious postgraduate career. But then the accident happened between My sophomore and junior year in college. And that's when, you know, my 2.7 GPA went up to 3.5 at 5. So it just, it made me focus. It made me realize I wanted to go to medical school and it made me realize I wanted to help people and also just I was above it. I started doing research when I was an undergrad, when I came after my accident, actually, and I went down to Emory University. My first time away from home and things that. And it was just, it was a wide opening. Say I could, I could do research. And then they told me, you can go to school and get paid. I was like, what? So that was kind of my, my mission.

And honestly, I did not.

There was no Christopher Reed Paralysis Fel foundation back then. There was no Internet. There was no things of that nature. So you kind of had to strike out on your own and try these things.

So that's, that's how I ended up.

You know, going into academia. I worked as a technician at NIH for, for a couple years before going to graduate school. So I kind of wanted to get back into becoming what is it like to be alive as a paraplegic with 20 years old. So I worked. But then I, as I worked, I was studying and I studied to take the graduate exams and, and then got into schools and decided to go to Florida, University of Florida, which is the.

Furthest away from home I could get warm.

Oh, yeah.

And so it was a very, very.

Important part of my life. So that, so going back to the original question, yeah, the injury definitely put.

Me on a different path.

And what kind of supports or help did you have in those early days?

First and first, my, my parents and my sister and friends from childhood, there were no organizations. I didn't join up with any kind of a peer group or mentoring. My parents, I believe, used to go.

To some kinds of groups for support.

But basically this was before GoFundMe. And we just wrote letters and asked people for help because we couldn't afford, you know, to do all the, we couldn't afford the expenses. And so we did a lot of old school emailing and writing and I guess the, the preview to what's now called GoFundMe. And it really helped solidify and helped our community. It helped me, for instance, also be.

Able to purchase a hand cycle for.

Racing, which back in that day was just unheard of. And it was custom made and it was just strange. But again, those are the kinds of things that having a support group in family. Oh, and by the Way I should say church. My church was very instrumental. I'm Russian Orthodox and in. In the Washington D.C. area was a very. Is my church that I was baptized in. And so growing up, this was always my, you know, my go to. In my. And when I got injured, it was a big, big nucleus and to my recovery was having the church group. Yeah. So part of that. And ironically part of the church group that I was involved with is also the Russian American Scouts called the. Well, it's called the Russian American Boy Scouts. And we used to meet or used to meet at church all the time. That's how we grew up. But we had a weekly, excuse me. Summer league camps out in the wildernesses of West Virginia and Virginia. And that's where my motorcycle accident happened. Was that one of these camping trips?

Oh, wow. Okay. And how long did you stay in like a rehab facility?

Yeah, I was in the. I was in the National Rehabilitation hospital.

In Washington D.C. for my. After I got out of Georgetown, they put me there and. And I was there for about three months.

They said they wanted me there six.

Months, but I was dead set on getting out. And so I got out in three months and went. And I. That's when I really just decided that I wanted to go back to school and finish up my degree and actually did correspondence courses. And actually because of my Russian language and correspondence courses, I only graduated. I missed a whole year of college, but I only graduated a semester behind because I was taking correspondence courses.

Oh, okay.

The old days before we had zooms.

Wow. Huh. So they'd send you a packet info stuff, something like that.

That's right. Yep. The. The Internet actually had not yet even, you know, surfaced. So this was all still old school, you know, snail mail kind of stuff where I had to read old books and write my old handwriting and send it in.

Yeah, I. I get it. I learned braille from a correspondence course from the Hadley School for the.

Right. It's by yourself? Wow.

Well, with my mom. My mom.

Sorry.

Yeah, yeah, yeah, yeah. Same. Same thing.

So you got thrown in that way, right?

Yeah.

Gosh.

So there was nobody to even like.

Hear any kind of advice to you just kind of like truck it, you know. Right.

Well, my mom just called and found at that time I went blind in 1990, so. And that was the year the ADA passed, like you said. So. Yeah, that was helpful. And my mom called up the. Just looked in the yellow pages again pre Internet and found the Department for the Blind. And she called them and they walked her through. They helped connect her to people. So that's. Again.

So.

Again.

So I. I can.

That to my parents back in the 80s. Like, paralyzed.

What, like he can't pee?

He can't.

But again, I mean, nobody. Like this was all foreign to us.

Back in the day. Nowadays you can't go to a website without getting all kinds of information overload about injuries and disabilities. Back in the day, it was kind of like, well, good luck, you know?

Yeah, yeah.

Thrown in the deep end of the pool. And in a way, I used to actually go back to the. To the. To not Georgetown, but to the Washington Hospital Center.

Not just for my own physical therapy.

But it really helped me to help other people.

I actually went there and I was mentoring.

I was doing peer mentoring before it even had a title, I guess.

But I went in by my own volition.

I wasn't being paid and I was.

Working, but I would take off work.

And I would go to the hospital. And actually, in a way, it was.

Very, you know, reinforcing for me to be able to say, look, I'm doing.

Okay and I can help other people.

Yeah, same here. It's interesting. Our stories are different, but. But similar because after I lost the sight, I was a writer and I lost the use of my left hand in 2016, and I just thought, well, you know, that's it, that everything's done. But honestly, getting back in the job at center for accessible living in 2022 and learning that I could do peer counseling, you know, and helping other people get through whatever disability journey, you know, wherever they were, it was hugely helpful for me. I hope for them as well, for the people, but hugely helpful for me to learn that, hey, all this garbage that I have dealt with, there's. There's some. There's some info I can share. I can make something out of it, you know.

That's exactly right. Yes.

So, yeah. And rehabilitation. I. After my 2016 surgery, I was at. I think it's called Stallworth. It's a rehab hospital affiliated with Vanderbilt. And I was there a month and I had to. I had to relearn how to walk, feed myself, you know, all those things. I also left early because I had little kids. I had a four year old and a seven year old at home.

Oh, my gosh.

Yeah. And I wanted to get home to. To them. So. Yeah. But it's interesting. Those places are so helpful. But also, gosh, you just. You want to get out, right?

Right.

Yeah.

I was gonna say as soon as possible.

I must admit, Kim, I don't admit this much. But when I was in rehab, I was so in denial. I was looking at everybody else around us in the circle, in the gym, and I was like, poor guys, poor gals. Like, I was like, they're not gonna, I'm gonna do okay, but they're not good.

I was just very, I had a.

Different attitude and I, I guess it was denial X, you know, exponentially, you know, amplified because I just, I, I was more like a Madoer. I'm not, this isn't me.

Yeah.

And every time, I don't know about.

You, but every time I would conquer something, whether it was getting a cast off or was getting something off or.

Becoming more abled or more independent, my God, it was like a huge victory, you know. And does it seem like, you know, in the bigger picture?

Yeah, it took you back, but it.

Was the incremental steps that were huge. Getting, you know, minor things that we're recovering because I mean, you know, we, we, we, we both were near death.

Let'S put it that way. Let's.

When you're in a hospital for as long as you and I have been, it's almost like death.

Yeah.

And you feel like when you're going to come out, what's it going to be like, what's the new life going to be? And that's where nobody really can tell you. But with people like yourself or myself.

At least we give the, the, the.

People with recent, who are more recently.

Injured some, some perspectives and to say that there is possibilities and it's not.

One of my biggest things that changed me, by the way, when I was in the hospital at the rehab was.

A gentleman by the name of Ron.

And I forget his last name and.

I wish I didn't, but he came.

And he visited me in the hospital.

At the bequest of a nurse practitioner there who knew him.

He came in and he had a sports car and he was, he was, he was paralyzed and waist down, but he was taking his legs and he was folding them. And I was like, who is this guy? And then he went out and he got all, got into his car and it was into a, into a, it was into a convertible Thunder, not Thunderbird, a Mustang. And I was like, he folded his wheelchair up.

He threw in the back. I'm like, holy crap.

I, I, no one told me this in rehab, like, and that's what really helped me was. And again, finding somebody who's doing it with the disability versus listening to everybody telling you how to do it, you know, you kind of have to mimicry.

I guess in a way, like.

Yeah. So did you end up getting a sports car?

Yes, I did.

Wow. What kind?

The first one I got was a Grand Prix actually. I converted my old Grand Prix, which I had before my accident, into with hand controls. But then I bought my first Thunderbird, which was my.

Was my first big sports car, red Thunderbird, you know, you might as well put. Write a ticket on it next to the side because it was so glaringly obvious and fast.

And then.

And then my Marie and then my upgraded to a.

To a Monte Carlo SS after that.

And then I got into an accident in 2018, which I had my second.

Spinal cord injury, by the way.

Second. Oh my word. Oh, wow.

2018. And then totaled the car. And I've. Now I've been driving ever since a.

Van with the side ramp.

It sounds like you need to stay. Stay with the van there. So what happened with the. What in the world.

The second spinal cord? Yeah.

Yes.

I was on the. On my way to work for a meeting and I don't recall exactly how.

It happened, but I turned into a turn and somebody keyboned me.

The car was slipped twice and had.

To get the jaws of life and everything.

I was conscious for most of it, but kept slipping in and out and didn't realize the time.

But I had definitely had a second spinal cord injury along with, I don't know, seven.

Six broken ribs.

Excuse me. Yeah, six broken ribs and left arm that was just really badly debilitated, wasn't broken, but I couldn't even operate a motorized wheelchair.

That's how bad it was. But then, you know, got out of the. That was about a month recovery at.

Cardell Hill here in Lexington.

And then I went back to work.

Probably way too early, but I just, you know, I'm a doer. I can't, you know, say, you know, woe is me. And so I went back and continued my work.

So is that. Is that uncommon for someone with a spinal cord injury to get. Does there something about. Is there something about having a spinal cord injury that makes you more susceptible to another one?

I don't believe so.

But I will say that I know three people and they happen to be, well, one. One man and two women who have.

Had two spinal cord injuries. Also.

My second spinal cord injury was lower that my. My. I'm injured from my T5 paraplegic. So mid chest around my chest line. I can't feel or control below that. And so it's brings in a myriad of constellations. I don't have any Trunk control. I can't cough.

Like it could be four because I.

Know the intercostal muscles, the misnomer or what. People get surprised about me is that.

Because I am kind of rambunctious and.

I'm broken bones and stuff, they assume.

That I was responsible for my own motorcycle accident. And that's what I wasn't.

It was the spinal cord injury that I had the second time in 2018.

That, that I was driving and it was involved with this accident. And the second spinal cord was much lower.

So I have a high spinal cord.

Injury from the past, but the lower spinal cord injury is around L1, L2.

And they said, when they told me they had spinal cord injury, they said, oh, but it's unremarkable.

And I didn't know what that meant.

And to this day I still think that I have some secondary complications from it. But you know, it's kind of like, well, you're paralyzed from here down. Oh, now you're paralyzed a little bit lower.

But you couldn't do that, you couldn't feel that anyway. So it's kind of a, you know, I got trumped on that one.

Yeah, that, that's funny, the words they use in the medical jargon stuff, right? Unremarkable. It's like. Well, maybe you wouldn't remark on it, but truly I would.

Yeah, yeah, exactly, right. Yeah.

So tell me, since you are a researcher, tell me what kind of things you look into. What kind of what, where's your, your focus area?

Well, back up for a second in that I, I came to. So I went overseas for my very first. After I got my degree, University of Florida, I actually did my first postdoctoral.

Fellowship in, in Paris, France.

Oh, wow. Huh.

Talk about changing your lifestyle and being.

Inaccessible and things of this nature. But this was back in the 90s.

And so when I came to University of Kentucky, I came very open minded. But I knew that I wanted to.

Do, in particular, I wanted to do something that was going to involve animal research but that had clinical relevance.

And so, long story short, I've chosen different kinds of models in spinal cord injury modeling. Meaning we all have different injuries. Yourself, myself, animals, we have to do the same thing. We have to injure them differently, different levels in different severities to be able to test compounds. And so I, after coming back here and starting my own lab up, I realized I wanted to treat things that weren't walking and talking and, or even grasping. I wanted to learn more about what, what we don't control, which is the autonomic. System, heartbeat, blood pressure regulation, sweating, which.

Are really compromised after spinal cord injury.

Especially in people with levels of T5.

And 6, which I have and above, like in the cervical, like quadriplegics, they suffer major, major cardiovascular complications because their autonomic system, heartbeat, blood pressure, sweating is completely compromised.

So I have been studying that Kim.

And in doing so I brought a lot of awareness to the community, obviously the preclinical, but mostly the clinical community.

To stop trying to make people walk again. That's not what we're.

Well, yeah, it's a noble mission and I'd like that myself.

And I could talk about the implants.

That I got years ago to help.

Me walk, but that the point is that while we're sitting around, we have lots of other insidious bad things that.

Are going on with our bodies.

Let's treat those, let's, let's look at those. And so basically I'm looking at conditions.

About autonomic dysreflexia, it's called.

These are autonomic syndromes that people with high level spinal cord injuries don't have the ability to either sit up straight really quick. It's called hypoten, orthostatic hypotension.

You get dizzy, you fall down, or.

The opposite when you have a full.

Bladder or when you have to do.

Number two, you don't feel it per.

Se, but your blood pressure starts to rise, as would anybody. I mean even able bodied people. That happens when they have.

The problem is with spinal cord injury, you don't have a system to quell it. You don't have your brain to say relax, you know, tell your body to chill out. So you have to fight that kind.

Of autonomic barrage of hypertensive crises which down the road leads to strokes, leads.

To all kinds of problems.

You know, for is aged.

And this is one thing, Kimberly, I'm emphasizing here. Spinal cord injury accelerates aging, period. It makes you older faster. Why?

For all the reasons that older people get older.

You're sedentary, your basal metabolic rate is lowered.

And so therefore, if you're at 20 years old like I was, and you.

Get a spinal cordy already, you've thrown.

Yourself into 30, 35 year old bracket, right?

And then, and then that, that doesn't go away. You, you started off that level. So the projections for people long living.

With spinal cord injury, depending on whether they're paraplegic versus quadriplegic, are astronomically cost exorbitant. We're talking millions of dollars over the over Lifetimes.

And how many people make millions of dollars over their lifetimes? Not.

Well, many do nowadays, but back in the day there were not people making that kind of money.

Right, right. And disabled people aren't likely to have that kind of money.

Well, and that's the catch 22. Also with AD speaking to advocacy. If you want to help people with.

You know, who are not employed or.

Get gateful employment, if they're making too much money, like even $11,000 a year.

Then they don't get Medicaid benefits or any kind of benefits. Like, what is that?

You know, they, they penalize you for.

Trying to become independent. Right. Trying to be a, a tax paying citizen. And you are, by the way, we pay taxes. It's not like, you know, stop paying taxes on disabled people, you know.

Right. How dare you not work now you, you worked and you made too much money. So now we're going to punish you. It's like truly, it's a can't win.

Right.

So Paris, I've heard, is an extremely not, not wheelchair friendly city. Is that what you found there?

Yeah, it was definitely. Yeah.

Yeah.

I went back in 2014 after I'd been there in the 90s. It didn't change much.

Oh, wow. Really?

Subways.

The subways are completely inaccessible. You can't use the subways.

Really?

Not at all.

Nope.

Can't use them. Anybody?

Oh, you could use them if you wanted to go from one station to just one station.

I think there are two that are.

Accessible, but that's it.

You. I used to have nightmares about getting lost in the, in the, in the subway systems in France when I lived there, because it's very scary. Oh, wow. Yeah.

And everything's cobblestone streets, by the way.

It's old school, so let me say.

Right. Because it is literally very old.

Yeah.

Well, they don't, I don't know if.

You know, it's been France, they don't have air conditioners.

So I mean.

Or if they do, it's in restaurants and hotels, you know.

Right.

Do not have.

So it's, it was definitely a culture shock.

And then coming back to the States, you know, after that, you know, and.

Coming to Kentucky because I came directly.

To Lexington from Paris, it was a shocker to me that, wow, okay, it is better here. But state is still not up to Paris.

Like, I don't know, like, you know, almost what Americans complaining about, you know.

I mean, what are, what are we.

Pointing the finger about? We have our own things that we have to worry about.

So. Yeah. Yeah, but obviously you like, you like it here in Kentucky, either the place or the job, right?

Yeah.

Yeah.

I actually, when my ex and I.

Moved here from Paris, I thought it.

Was going to be a two year stint. You know, I thought two years and.

We'Ll be moving on to somewhere else.

And then it just got to be a place that, you know, why, why.

Did I come here to Kentucky, by.

The way, is because spinal. So we have the Spinal Cord and.

Brain Injury Research center, which is a faculty of. And one of the founding members was.

Founded in 1999, our center here. And it's based on speeding and drunk driving ticket tariffs. So if you get a speeding or drunk driving ticket in Kentucky, part of that goes off to spinal cord and brain injury research funds. And the University of Kentucky and the.

University of Louisville typically are the biggest ones. They compete for these monies on a yearly basis.

And that's what drew me here back in the 90s, because I had never.

No one had heard of these kinds of programs except there was one in.

Florida when I was there, but they developed it in Kentucky.

So when I was in, in, in, in, in France, I was telling my.

Telling my ex, hey, we're going to move to Kentucky. And she started crying because she didn't.

Even know where Kentucky was.

Like, you know, she thought it was near Oklahoma or something. I said, well, it sort of is.

But not that, that far.

And so, and so. But coming here was because the fact that there was impetus for me as.

A young investor, young professor, to not.

Necessarily have to have NIH money to run my lab, but to have state funds to begin new experiments that I.

Could build up and then get bigger funding.

And that's how it worked. That's how it's still working to this day.

This is.

Last year, the Casert funded out nine different laboratories at University of Kentucky in Louisville to do spinal cord injury research. To do spinal cord injury research, primarily preclinical like in animal models, but there are also some clinical grants as well.

Okay, so what's, I'm so glad that you said like that Walking again is not, it's not the be all, end all. There's other stuff to look at. I'm so glad that you're, you're taking on that challenge. What's on the horizon? What are we, what are we looking at you or others or.

Yeah. Let me just step back just for a second, if you'll mind.

I wanted to explain.

I. I did have an elected ticket 22 when I joined Kentucky. When I came here I actually got experimental implants put into my legs and my back. Electrical implants that stimulate my muscles. Sort of like what you see on.

TV when you see these people putting.

On these things that stimulate your muscles.

That you lose weight. Who knows? It works.

But that was the principle. And I got these implants to. To do things. And I had them in for 20.

Years, and they were useful.

I could walk with a walker 50 to 60ft.

Okay. Now, it wasn't normal walking. It was like Frankenstein, you know, or I called the Homer Simpsons old man struggling along.

But I could.

I could walk that way.

But here's the catch 22. That is all hardwired on your outside. So like every. All the electro. So I had wires going all through my body.

Right.

Nowadays, what you were asking about is what's called spinal cord stimulation. But it's not into the spinal cord or into the muscles. It's on top of the spinal cord or even through the skin. Now called transcutaneous spinal cord stimulation, where.

They zap your spinal cord with electrodes, with paddles.

And. And we've been finding.

And there's been what we. Excuse me.

It's been found across the country. And I actually went to Canada two.

Years ago to learn this technique that.

It actually restores volitional movement of paralyzed limbs and also, amazingly, restores bowel and bladder function. That's what's hot on the horizon.

Therefore, now, because it is working, there's a trial that's going on. It's called Onward is the company that.

They'Re running it, and they're finding that these devices are restoring remarkable function that normally would have never been considered, not even thought of considered meaning heart rate, blood pressure, or orthostatic hype. All these things I talked about are now being not only targeted, but they're being highlighted as things to recover instead of walking. And I just think it's changed the entire field because walking, let's not put it lightly, is a tall order. Walking involves a lot. And therefore, we're always trying to shoot.

For this magic bullet or this or this. This.

This huge touchdown. When the. When the spinal cord injury community was asking for. We want first downs, we want consistent first downs.

We don't need touchdowns.

And so we kind of. The spinal cord injury community, which I got involved with in called UNITE to Fight Paralysis, is kind of going back and now changed the way we have really influenced, I should say, the way the NIH and private organizations are funding research. And they're not all looking for walking as a matter of Fact, we did a retrospective analysis and then unfortunately, for the past 25 years, there has been a disproportionate. I'm talking about significant amount of work.

Done on walking and none on bowel, bladder or even forearm for hand, for quadriplegics.

So again, it's because Christopher Reeve, God bless him, I met him twice and he's a remarkable. I can't even laud him enough. But one of the disservices, I think that that was done was when he made a picture of a CGI picture of himself walking on stage to get.

A, an award back.

And this was back in the 80s, excuse me, 90s. It drove this field, therefore, to say we want to get Christopher Reeve walking again. And that's where I think a lot of the money went. But I believe in hindsight, it was poorly spent. So what you're asking is what's hot is that this is involved. The other thing that's hot is that there are now oral therapies, drugs that.

Are being on, on right on the.

Pipeline, soon to be FDA approved, that allow for. If you take the pill, it will allow one of two things. Either you go pee or you go poop. And guess what? The drugs have such a short half life that once you do your business, that's it. You're good for the day. You want to do it again, you take the pill again. And that is something again, to me is so exciting yet.

Right.

Yet people in the laboratory who are being told to do research aren't going to find this the most attractive or sexy or even. How do I even approach this? That's the difference. Like, you could see a rat walking.

Or a mouse walking or not, but.

You can't really tell if they're feeling.

Good or if they got a full bladder or if they've got a poop or whatever.

You can't tell that. That's why the shift has been major.

In the last five years of looking.

More at autonomic outcome measures in addition, if not exclusively, to walking and hand grasping.

And we should say for people who don't know which, I don't know that there are many. But bladder and bowel care are hugely important in terms of the support needs for people who are paraplegic or quadriplegic. Correct.

Oh, my God, it rules. That ruins.

Although it does ruin, it rules your day.

I have some good friends of mine. I'm on a quiet. I'm on a podcast with two other quadriplegic buddies of mine and they just talk about how our Routines are all centered 24, 7 around peeing and pooping.

That's true. We laugh because what else can you do? But oh my gosh, you know what? People who walk, people who are non disabled, their lives are too. It's just easier for them. It's right, you know, I mean, our humans, we, we. We take in food. We.

I gotta be honest with you.

I gotta balance with Kimberly.

When I go into my handicap stall.

When I'm in the bathroom and I see a other people in other handicap stalls and they're there for minutes, they're reading magazines and they're doing stuff, I'm.

Just like so upset because I wish.

I could do that. I wish I could just take a bathroom break and just relax. And oh, you know what they say, because Confucius says that one of the.

Best things is going poop.

Right? That's one of the best pleasures denied of that.

Yeah, yeah. So that, that is, that is truly exciting. And I'm glad you, you said that about the, the Christopher Reeves thing. And I think he was responding to his time, right, that, that walking and yes, you're right.

And the thing is, is that he, he drove. So the thing that.

What's remarkable about him is if you look back at his quotes and people.

Do now, I remember him saying those then and I was like, yes, do you hear what he's saying? Which was, yes, there's a lot of hype around, but we need to restore dignity. We need to restore just. I mean, he couldn't breathe, Let me tell you. Look, Adam does. Christopher couldn't breathe.

He was on an artificial respirator.

The first time I ever heard him talk was when, I mean, without any hesitation was when he had the same implants that I have in my legs and back. He got them for his electrodes, in his, in his, his inspiratory muscles, for his diaphragm. Well, guess what? He could wean off the ventilator and guess what he could do. He could smell coffee for the first time he had in years. He could smell wife's perfume. He could love and he could taste things for the first time. Well, why? Because when you're using a trach, you have none of those sensations and people don't really understand that and how that diminishes your quality of life. So what I would say, one of the biggest compliment contributions that Christopher Reeve did without even getting headlines except in New York Times, there was no articles about this as science was about him breathing on his own with, with stimulators. And to this day, I kid you not, to this day is still the only intervention functional stimulation in the lungs that is still now accepted in clinical practice to help people with.

With cervical injuries.

So.

Again. But it's not meeting headlines.

No.

Right, because it's not cortically driven. You're not thinking about something and making it happen. Well, that's, you know, to me, when I got my implants, I knew how.

To push a button, for Christ's sake.

I knew how to push a button.

To make my legs, you know, spasm and walk.

So therefore I wasn't walking with my.

With my head, but I was using.

My head to push a button, you know, so that. So that I rule. I was ruling out the middleman, which was.

I tell. I. I have balance problems and things. And I tell my family sometimes when I'm not having the. The best of days that this walking on two legs thing, I got to tell you, I just don't think this is the evolutionary grand scheme.

We all learn to crawl before we walk, right? I mean, burning back. That's what it is.

So, so I assume if people, People look up and get involved with the Congress, that they'll be able to stay. Stay on top of these kinds of.

Oh, yes. And I would also. What I will do is ask you to. Maybe we could share the. It's a Facebook page.

Kentucky Congress, spinal cord injury is only one of them.

And then what you can do is contact me and I can put you on my list service my newsletter, actually. That comes out, which doesn't come out to the web. It comes out from my office.

Yeah. Okay. Well, I will put that in the show notes then. I will definitely. That will be in the. The show notes now people will. Our listeners can look up that and get involved. And are the meetings for that group or, or when those meetings start back, will they be hybrid as well?

We. We always had hybrid.

Oh, great. Oh, great.

Excuse me. I wouldn't say that it took us.

It took maybe the last three years was hybrid, but those do demand a lot.

But we, We.

We really wanted to. And so, yes, to answer your question, yes, if we were to do it.

When we're going to do it next, it will be hybrid for sure.

Okay, wonderful.

After co.

I'm making everything hybrid.

It's. It's one of the few good things that came from company.

What do you say that. That's what I say too. It was also the time where all the stores started delivering stuff to homes.

Where was this my whole life.

I know I Know, I know, right? Yes.

Huh.

Yeah, same, my, I have friends who are blind and we say the same thing. It's like, yeah, Covid, everyone else had to stay home, dude, we're, we're always at home. We've never left.

That's right. That's exactly.

And then the other thing I would say is you are a podcaster now. You alluded to that earlier.

Yeah, yeah, I guess so. I, I, I, I, I delved into it.

I've been part, I've been a, an interviewee on podcasts, but I've never been.

Part of podcasts until a two friends of mine, one up in Canada and one up in Jersey, who are both quadriplegics. One is a high level quadriplegic, C6. His name is Barry Monroe. And his buddy, and our buddy, excuse me, John McLevy, he's in Kessler Institute in Jersey. He's a quadriplegic, but he has central cord syndrome. So he can walk, he can get up, he can do everything, but he can't use his arms. That's a strange thing, huh?

It is, huh?

Yeah. And so the three of us get on there and we bring up topics. Last topic was bowel and bladder. Excuse me, bowel. Excuse me, bladder. Next will be bowel. And then after that we'll be. We did before that we did pressure sores. So there's all kinds of different aspects about how each one of us have gone through these things and the propensity.

And moreover, how we dealt with things. Because there's no roadmap out there.

Right.

And I think having three diverse people on a cast with the experience is much more, I don't know, informative than when you have one person like myself talking his head off because, oh, wait.

He'S a go getter, you know. But it's not just being a go getter.

There are various grades of go getting. Like, I didn't, I'm not like, I have friends who climb mountains and do extraordinary things and I can't do that, but I dare say they could do the things I've done. So, so it's all about what your niche is, you know, and the Internet.

The problems that it has, it does bring those people who are in very niche groups together. It has the capacity to do that.

Well, one thing, Kimberly, I, I, I.

I admire, I guess I'm very envious about is I see these YouTubers now and these kids putting stuff on there and just, you know, looking like, and everybody likes them. They got a funder, but they've been paralyzed for three years or four years. I'm like, whoa, how can you do that? Like, don't you know you might be.

Leading people down the wrong path?

Yeah.

Anyway, it's kind of like one of these catch 22s where if I had that kind of venue, what would I would have.

What would I have done?

Done, you know, what would I have?

You know? And at the same time, you're kind of like, wow, thank God I don't.

Have to deal with this stuff nowadays.

Because to me. And here's where I wanted to mention.

Came out, especially with regard to this podcast, there's so much info, information overload out there. Right.

I mean, if you wanted to find out something about your condition, you could find six sites. Are you going to listen to all six sites? Only the ones that tell you what.

You want to hear.

Right, right, right.

Because that's the way society is. It's all about likes.

Yeah. And that's. That's why I was a little hesitant to ask you what things are on the horizon, because I do not believe in chasing the miracle cure.

Right.

No, and me neither.

Why do you think I sacrificed to put implants, by the way? I haven't told you that. Those implants that I had in for 22 years and I was walking on stage in foreign countries and stuff. I had. I had another surgery two years ago. It was a very invasive surgery because of that they infected with mrsa, my implants. And the implants, because I told you, the wires going throughout my body.

Right.

Throughout my body. So they didn't just infect my wound where it was, they infected my entire body. And I. And they wouldn't take them out. They had to physically pop out each time, and then they would remove it. It was. I'm telling you, it was one of these things where it was an epiphany to me to say people do not volunteer until you know what can happen.

To you in 10 years.

Right, right. Yeah. It's kind of like I've always been like, oh, implants, you know, neural link. Sign me up. And then I'm like Elon Musk. Hang on. Maybe I ought to give that some more.

Well, one of my.

One of my very good friends, Ian Burkhart, is one of the first recipients of those. Of those Elon Musk's implants in his brain. And. And he will be the first to admit that it's not necessarily increased the performance in his own life, but it's. It's a stepping stone. Sort of like what I was with my FES implants.

Right.

You. We got to start somewhere. Somebody's got to be the guinea pig. But then again, don't keep chasing the channel if the guinea pigs telling you it's not working.

Right? Yes.

Yeah, that's what I have an issue about. Like, you're not listening to the. To the patient.

Yeah, yeah. The miracle cure that I do worry about. It's. It's just a headline. It's to fill column inches to fill content. It's. It's not always for us, is it?

No.

And, and, and again, that the one thing I'll go back to Hark, in.

My days, back when I was in.

In rehab, no two spinal cord injuries are alike, even if you are technically, hey, those people are both parapoid. Or those people are both quadrant.

Oh, my gosh.

The secondary complications for each person are all different, yet we lump. And this is Carson. I have a very good friend. Well, you know Josh Blue, the comedian by chance. He's on the.

He's.

He was on the. He's a comedian who has CP and.

Oh, right. Okay.

Yeah, he's.

Well, anyway, he's got this line. It's an older line, but, like, he talks about the disability bus. How, like, hey, you, the deaf guy, help the blind guy get into the bus. Hey, you, wheelchair guy, you can't get in. Hey, black, I come back and you help the guy. And that's what it's like. We feel like the discipline disability bus.

With the ADA train.

It's like this big monster train, but no separation of distinguishing between one disability versus another. Like, for instance, handicap spots. Do you know now that there's a controversy across the United States that handicap spots in Florida, in Jersey and Ohio, I believe, are now allowing pregnant women to park in handicap spots? Not pregnant women with disabilities, but pregnant women who.

Or bearing.

Now, I understand the theory behind it, and don't get me wrong, I'm not anti, you know, feminist, but my goodness, are you kidding me?

This is a whole different sector.

You're. You're taking up a space for convenience anyway, and.

Oh, I'm so glad you brought that up because, you know, okay, I have things I could say about that, but Kara Ayers wrote a wonderful article about it, and I believe she was one of our very early guests on this podcast, and she wrote an article about why. Because I think most people here let pregnant women park in handicap spots. And most people would be like, sure, why not? But she wrote a wonderful article I will link to in the show notes. I want People to read it. I will just tell you one of the things that she says is, what about pregnant disabled people? And I'm like, boom.

Wow.

Yeah.

You know, I mean, the double jamming.

Yeah, yeah.

Yes. Didn't even think of that. So, yeah, I want to link to that. But go ahead with what you're saying. I.

That's really. That's what I wanted to say about that family.

I just.

I could go on. You and I go on days about that.

We should. We'll do that off, Mike. We will. We will do that, definitely.

Well, actually, one other thing before I forget. After we get off, I'll send you a couple other things to drop in the. In the chat that think people might.

Be interested in listening to.

Sure, sure, sure. So. And I'm going to link to your new podcast. What's the name of the podcast?

It's called Three Men in a Spinal Cord Injury.

That's hilarious. That's hilarious.

And it's. I could say I'll put a link to this. Actually, part of it's called a quadcast, which is what John McAlevey started in Kessler, New Jersey, and then he kind of teamed up with myself and Barry to say we need to have a spin off of the.

Of the quadcast called the Three Men and Spinal Cord Injury. So that's what we're doing.

And listeners, I have listened to the podcast. It is great. It is wonderful. You should give it a listen. And I know people may say, well, why are you promoting another disability podcast? Because I don't believe we're in competition. I believe let's just immerse ourselves.

When I. When I first introduced to you and.

Then I went on your.

I looked at all the people, including Jason, I looked at all these people that you talk to, including Jenny Smith. They're all like my best friends. But it's all. This is what it's all about. It's not about secrecy. We don't have trade secrets, for Christ's sake.

Nope, Exactly. Let's. Let's just immerse ourselves in this culture. Let's all support each other.

And I think the other thing, I mean, correct me if I'm wrong, but we're also doing this because of passion, not because of paychecks.

Right.

It is not a money maker in.

This one, that's for sure. In fact, it might slow my down, slow me down from gaining more gainful employment.

So.

Exactly. Exactly. So, yes, 100%. I will put that in the show notes, people. Check that out. And we will get Sasha Connected. And maybe we can even have you back on here.

I would love to. And actually, if we could, maybe in the future, I'd like to talk more about my, my relationship with Jason and.

What we were able to do.

You know what? Let's, let's do that now because Jason, I still. Very, very soon, since we've, we've lost Jason, we did mention right before the holiday, the winter holidays, we did talk a little bit about Jason. But once you go ahead, just in case his wife and kids, you know, stumble across this episode, let us know about Jason, what, what he was to you, what you thought of him.

Well, Jason Jones was a, is a remarkable, was a remarkable man. He was a. He is a C6 or 7, very high level quadriplegic.

He never had to have trachea, though.

Fortunately, he was paralyzed when he was.

A teenager in a high jumping accident in high school.

In the event, I met Jason not through Jason, I met him through his father. His father also, who has passed, unfortunately. Bob Jones. Bob Jones was, is a very reputable and well known durable medical equipment representative. Because he actually had a, had a trade for it, right? He had his son who was disabled, so he did that. He used to be a preacher, reverend. And through that, I kind of got to know Bob because he was my wheelchair guy. And we got to be very good friends. And I used to go with him to church services and I used to do lots of things. But then, you know, slowly but surely, I started to get introduced to his family and his son Jason, who we're speaking about. And when Jason and I became friends and we got to know each other a little bit better, he saw me as a renegade, and I saw him as this guy who was a politician. That's how I fought. Because Jason knew everybody, right? He just knew he had a connection with her. Well, long story short, we have very different disabilities, but we started to put our heads together and ask ourselves, what is a congress? What do we want to do? And we started it off. By time we went to a restaurant and it was completely inaccessible. And moreover, they doubled down and they said, we don't need to make it accessible because we're grandfathered in. And we were very upset. And so Jason and I started writing letters and we started to get lots of politicians in the local area to listen to us. And we started a restaurant checkbook. And that started really helping us gain a lot more sponsorship and membership. And Jason's connections throughout the, you know, throughout the disabled community really helped us. And I brought in the Scientific component. So when we used to have meetings, I used to bring in scientists and people that would talk about what you're asking, what's newest and latest and on the horizon. We used to bring in universal design of people to come in and talk about what universal design is. We had people coming from University of Pittsburgh who are in particular Rory Cooper, who's a very famous, well known paraplegic engineer who is responsible for doing a lot of the airline industry accessibility kind of modifications that were. That are forthcoming. Still in the works, but forthcoming.

He promised.

Yeah.

Hey, he's promising. Not me. He's promising, not me. Boy, that's another episode.

Episode we could do just on plane.

Travel, just on that.

Yeah, but, but so, so, and so Jason and I became very close in that sense and in, in a way, we became each other's alter egos, especially when we had meetings and things, because I was like this stone hard, we got to get this done yesterday, kind of a scientist. And he was more like, dude, you.

Can'T talk with parasit quads like that. You got to be relaxed, you know, like, well, okay, well, he didn't talk like that. I'm just envisioning that's how.

That's his Persona. Because Jason was. He was just such a laid back individual. And I guess when you have to put up with as much as he had throughout your life, you tend to kind of dismiss a lot of shenanigans.

And. And so he was more of the, the politically correct, if you will, team.

Team in that match. So he was the president, I was.

The co founder or vice president, I should say.

And then, and then, and then Jason just used to bring me. So a lot of his family, in particular, his mother became my second mother, if you will. I don't, my mother passed many, many.

Years ago and I don't have family here.

And so they adopted. I would go in there during Thanksgiving holidays and Christmases and became very good friends with them in that capacity. But throughout my time, I just was, I gotta say it, I was in awe and almost envious of what Jason had because he had such a, a beautiful family unit. I mean, but it was a family unit that was like 20 times size, 20 times bigger than I'd ever seen in anybody. And everybody just kind of like when they were in that area, we're just, we were family. And that really helped me in my own struggles. After my divorce and living alone with spinal cord injury, it really kind of helped me realize that I had a family. And so when, when recently he Passed. It was like a big, big, big loss, not just to my constituents and to naba, but to us as a very big gut in the punch. And that's why I kind of mentioned that the wind has been a little bit taken out of the sails of the Congress because of Jason's absence in particular. And moreover, he had more contacts and connections than I did as a professor because I guess my title and also my attitude sometimes is a little bit. Bit intimidating versus Jason's. And so it's. Therein lies the trick for me now as to how to balance his past.

With what I have now inherited.

Yeah, well, Jason will be missed, but, you know, in the new year, maybe the Congress can pull back together and work in his memory going forward, and.

That'S what we're hoping for. I'm actually working with Syl up at Centers for Independent Living up in Louisville. We're trying to maybe figure out how to pass this on, because Independence Place was down here in Kentucky, and we. They moved their offices to.

To. To Louisville.

So, again, we. We're missing a big part of what we used to be, but it doesn't mean we can't kill.

Still keep doing it with branches, different places.

Absolutely. Absolutely. A lot of work, a lot of workers. We're gonna.

Well, yeah, but, you know.

Well, if you don't know, I will tell the audience.

Getting people to work is. Is not an easy thing, especially because it's typically altruistic. You're asking people to take time out of their own. You know, their time out of their own schedules to. To help out with something that they're not necessarily getting compensated for.

Right. People are busy. Lives are busy.

That's exactly right. Yeah.

But, you know, the rewards are huge. The rewards are huge not just for our community as a whole, but individually, like I said, turned my life around to join into this community.

Right.

So.

Right. Well. And I'm glad you.

I'm glad you did.

It was very, very. I actually be honest with you, when I heard where I read your story, it almost brought me to tears to realize what you've been going through. I mean, it just. Again, no, every. My mantra, by the way.

And I should tell you, when I.

Was in the hospital, Bob Marley has.

Always been one of the biggest musical fans and things.

His mantra was, every man thinks his.

Burden is the heaviest is one of his songs. And that was my mantra when I had a quadriplegic roommate who was using a.

Who had to use a trach to even, like, breathe. That's what put things in perspective to.

Me is that every man thinks his burden is the heaviest.

That is true.

But it also means that they're also.

Greener grasses, and that's what people focus on.

And yes, it's definitely greener other places, but at the same time, look at.

What you have compared to other people. People.

That. That is true. I mean, I. I have. I have family. I. I have, you know, sighted help in the house and things. So on the other hand, I feel like when I walked into that rehab hospital, you know, they have, like, the gym, the workout room to. For. I feel like when the blind lady walked in, everybody was like, hey, you know, it could be worse. Look at her.

Oh, wow.

Yeah. Well, I know a blind quadriplegic.

Whoa. Yeah. See? So that's. That's. That's a lot. That's a lot to handle, right?

Yes, it is.

Yes, it is.

But, hey, there's a community. There's always community. That's. That's what we're doing. Well, Sasha Rabjevsky, thank you so much for talking with me. This has been a wonderful conversation. I'm sure we're gonna come back around at a later point in the year. And everyone, check out those show notes. Thank you, Sasha, for joining me.

Well, Kimberly Parsley, it's been wonderful meeting you. Virtually one of these days, we get.

Get to cross paths physically in our. In our great commonwealth.

Let's do. Thanks, guys.

Okay, take care.

Bye.

Bye.

Demand and Disrupt is a production of the Advocado Press with generous support from the center for Accessible Living, based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley, and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Anken for the use of. Of his song Change. Don't forget to follow or subscribe so you never miss an episode. And please consider leaving a review. You can find links to our email and social media in the show notes. Please reach out and let's keep the conversation going. Thanks, everyone.

I think I would agree. We both know there's a difference We've had our curtain calling this time the writing's on the wall. This war of words we can defend. Two damaged hearts refuse to mend.

This.

Situation Patience pointless with each and every day it's not a game we need to play. But each and every letter spelled out the need for us to open up our minds and hearts to change. Control the dice Then what will be will be this rig God for good to set us free Free trash There's just no way of knowing if love lives anywhere turn out the light and close the door. We try to make things better Repair and rearrange things Mu Each and every letter spells out different for us Open up our minds and change.