Raising Disabled Voices - Dr. Tye Martin

In this episode, we talk to Dr. Tye Martin about his life with Duchenne muscular dystrophy, his academic career, and what it's like living with a disability.

You can follow Tye on Instagram @dr.tyedmartin or subscribe to his podcast The TYEPOD HERE.

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Transcript

Deonna: [00:00:00] Hey y'all. Welcome back to Raising Disabled. So this week we have Dr. Tye Martin, and we're really excited to talk to him today. I found out that we both are from the same state. We're both from New Mexico, so mm-hmm. When New Mexico people realize this, We get really excited because we just understand each other's love of green chili in a way that no one else really can. Maybe I have to talk about that later, but um, This is true. It is true. Yeah. You know what Christmas means, right? Red and green chili mixed together. Absolutely. Oh yeah. That's my mom's favorite thing. She loves it.

But so we just wanna start out with you telling us a little bit about your family and just, your diagnosis and your memories of that growing up as a child. Just give us a little snapshot of you. 

Tye: Yeah, , I have Duchenne muscular dystrophy and that started for me around age seven or eight. The family pediatrician thought there were some signs that maybe that was what was going on based on some muscle weakness and things. And they sent a blood [00:01:00] sample to one of the Mayo clinics. And actually there's some we'll probably get into, but I really only found out that it was officially confirmed as Duchenne in the last year after doing another test. So this is something that we thought, for my whole childhood, that's what I had. And it, yeah, and it turned out it is.

But, not having that official diagnosis was interesting to find out about.

Deonna: There's different kinds of muscular dystrophy, correct? Yeah. Right.

Tye: There's, gosh, within the family now, I think there's. 30 or 40 different diagnoses that fit under that umbrella of a neuromuscular thing.

Rhandyl: That's way more than I knew about, I thought was like two or three. I didn't know.

Tye: I was shocked to find that. Yeah. Yeah, man. But no, I grew up in a. Really rural area of New Mexico. Mm-hmm. And I think my graduating class, it was like 64 people. Oh, wow. And my mom was a school teacher, and so my sister and I would go, to school with her. Mm-hmm. She worked at the same same school we attended. So that made it nice.

And yeah, as far as accessibility and [00:02:00] everything with my disease, it was progressive, so gradually losing muscle strengths. And I think around fifth grade I started having some falls, more routinely. Mm-hmm. And so I used a motorized scooter just around, longer distances around the school and home life. I was able to, get around in there enough to not need really a support with a wheelchair until probably I was 15 or 16. Okay. Yeah. And so it's, yeah it's gradually been new versions of myself with a disability, mm-hmm. Going through my life at this point. 

Deonna: Are there other progressive types as well? Yeah, 

Tye: They, I would say most of them progress in some way. I know that SMA is one that there is some therapeutic treatments and I think those are slowed down a bit by what's available. But Duchenne is one of the ones that there's really not a therapy even that's gonna, prolong things very [00:03:00] much. But it's strange how different each case is though. Mm-hmm. The same diagnosis might look really different. 

Deonna: Yeah. We have a lot of people that we're friends with that are online, that have SMA and mm-hmm. I didn't even know that existed. I had known about muscular dystrophy from some friends, but yeah, they do mimic the same type of, mm-hmm. I don't know what they do. So I wasn't really thinking about that until just now. 

Tye: It's usually some kind of muscle wasting, like there's some protein that's, missing from the muscle cells. Mm-hmm. Results in that breakdown, but it's, they're all loosely related in some way it seems 

Deonna: yeah. SMAs had, what is it, Spinraza, or what's that med called? I don't know. Yeah. Spinraza, I think is the, yeah. They've been having a lot of good things happening with that I've noticed. Mm-hmm. 

Rhandyl: Yeah, so you said you had a sister, is that your only sibling? Mm-hmm. Is she older or younger? 

Tye: She's five years younger. 

Rhandyl: Okay. How was that? [00:04:00] As a kiddo? 

Tye: good. Like we would, wrestle and have some arguments like all mm-hmm. All siblings do. But overall it was , really amazing to have kind of that support, and for her to grow up with, me having a disability and she mm-hmm. Learning to, to help and to deal with that. And, she has really always been really good on, helping and being there and just that support. . Having a sibling is just, is really a nice thing. That was one reason actually that my family moved to Tennessee is she is out here with her family and her little boy. And so that was one of the reasons for moving from New Mexico out here.

Deonna: Oh, okay. So you get to see him more and stuff. That's nice. Mm-hmm.

Rhandyl: So you're an uncle? 

Tye: Yeah. Yep. That's one of my favorite titles. Maybe the favorite title. Actually, 

Rhandyl: So Ty, can you tell us about your journey with muscular dystrophy and how it affects your daily life now?

Tye: Yeah. Well, the progression has led to more and [00:05:00] more impact on what I'm able to do mm-hmm. As far as independence and,, I went to University of New Mexico for college and for my entire time there I was using a motorized wheelchair to get around and everything. Mm-hmm. And so that obviously navigating, getting across campus, getting in doorways, and I actually had to have caregiving help for, more and more things as I've gone along, but mm-hmm.

I got through graduate school, and had some really great advisors that I worked with my research project, and they helped to make things more accessible when Oh good. When we could and, so that it's constantly pivoting and figuring out, well, what kind of process can I. Do to, maintain as much independence as I can while still making it safe and, that loss of physical strength. And, I always joke with people that it's another full-time job to manage a progressive disease that mm-hmm. Gradually strips away, your physical ability. 

Rhandyl: Mm-hmm.. Yeah. How old are you [00:06:00] now? 

Tye: So I just turned 37 actually, so the 40 number is feeling a little too close to me right now.

Deonna: Yeah. I'm turning 40 and I'm like, okay. Oh man. In some ways I feel 21 still, and then other ways I'm like, yeah, I definitely feel 40. Ugh, my body's taken this, me too. This whole experience has taken a toll on me, but

Tye: I don't know if you all are that way, but like your evening routine, if mine gets disrupted, , it becomes a major issue.

Rhandyl: Oh, my evening routine is, . just trying to get the kids to bed and to sleep and then if, yeah, if we have a nurse for my daughter, then it's oh yeah, okay. This is the only me time. That I have until I fall asleep. Or me and my husband, if he's not working, it's just but if something goes awry or if there's something extra that I need to do, it's ugh. It takes a lot of energy. And we're the same age, with your progressive disability. Yeah. I can only imagine how , you feel [00:07:00] whenever your routine is messed up.

Mm-hmm. Because even, like my daughter,, that's the one thing, like she's gotten over a lot of things, but her routine, if something is off and she knows, or she thinks she's going to be doing something at a certain time and it, yeah, it doesn't happen the way that she think. That's when she'll. Get pretty overstimulated and very not happy. 

Tye: Yeah. That's something too that I think evolved for me was that overstimulation, like I didn't use to have quite the amount that I do get now, and now if there's too many things going on, , I wanna shut down, and just go back to relaxing or podcasting or music or something, like I want to get outta that, that space, . and then oddly enough, with my tracheostomy care, it's weird, but that's a routine thing that almost, I won't say it's comfortable, but it's I'm just so used to it that if it's not. At the same time, or mm-hmm. Or consistently, it's, it gets weird. [00:08:00] 

Deonna: Yeah. I believe that. Yeah. 

I'm thinking about you being at UNM because. You know, being a New Mexico person, we all go to Albuquerque and I've been on that campus and it's just, I'm trying to think of how accessible it would be because it's so large and a lot of those buildings are probably really old. And I went to college with my friend Shayla, who has muscular dystrophy as well.

Uhhuh, and it. It was hard for her sometimes even being at a really small college, in Lubbock it was just, it was a really small college and there wasn't a lot of, point A to point B, but it was still hard, and so I'm just like, oh my gosh. Imagining just the large campus and just, oh man. Yeah, that was probably just itself wondering, is there gonna be a ramp surely there's ramps, but yeah. Yeah, that hasn't. 

Tye: The ramps overall were really good. The thing that gave me a lot of trouble was [00:09:00] the elevators, especially the older ones. Oh, I that 'cause it's these little details, that are weird, but like the buttons when they weren't extending beyond the wall just enough where there was an edge oh, right. I had the hardest time trying to push those buttons and reach them, and mm-hmm. That was a big deal. And then some of the push button doors that were automatic if they were turned off, or Yeah. Maybe they were behind the table. Brand new buildings that placed them like two feet higher than what I needed.

Oh, wow. Like those kind of things were just exhausting, and, especially , before I had my bachelor's degree, it was really crazy because, I had a humanities class here and elective, like way across campus, that kind of thing. But yeah, graduate school as I got there and it was more specialized and, I was doing more research in my office than I was outside. It got to be a nice routine. 

Rhandyl: Right. Hearing you say that? I've thought about it now because I'm so [00:10:00] aware of accessibility now. Mm-hmm. Um, Even whenever my daughter's not with me, I'm just always looking for, mm-hmm. Mm-hmm. Wherever I'm at, I'm like, okay, is this accessible ? All of the things. And I think back I've thought about this and especially now you talking about it, so I went to Texas Tech here in Lubbock , for my undergrad and it's huge campus, so I'm just imagining, I remember going, it took me, 10, 15 minutes to get from one., If you got lucky to catch a bus, but those buses they weren't handicap accessible. So I'm like, there's so many things I've thought of, and so now hearing you say it even the elevator situation, like it's one of those things you wish you had that mindset back then, but I never thought an accessible world then, and that's, a big part of what you do and what we try to make people aware of., Because this world is so not accessible, like at all.

Tye: [00:11:00] Even with ADA, like that's mm-hmm. That's still, yeah, exactly. I mean it, 

Rhandyl: like you said, doesn't come close to that. A brand new building are way Yeah. There should be codes for that. I'm sure there are.

Tye: They, yeah. And maybe it's like a local or regional thing. Maybe, New Mexico for whatever reason, maybe it had a harder time but there were even brand new buildings built that didn't have a push button. Mm-hmm. Period. Wow. And so that was just insane to me. 

Deonna: Well, and that's something that me and Rhandyl we're always having somebody, go push the door open for us, or I'll push the door open and I'll hold my body there and pull her through. Mm-hmm. I mean, You know all the things, but like when you're the disabled person and you're there alone and you don't have somebody helping you, yeah.

That's a whole different level of what they need to have available for you. My daughter is not going to be opening her own doors, she's a quadriplegic, but you have that capability, so they better have [00:12:00] it ready for you. And that just. It does frustrate me. Like one of our friends started going to college at LCU and I heard they were making all of the doors accessible, and I'm like, I'm sorry. Yeah. That should have happened years before she came there. Mm-hmm. Like my friend Exactly. That has muscular dystrophy. She went to that same college 20 years before and, what was there done for her, you know what I'm saying? So it's right. 

Tye: It's such a slow moving thing. Mm-hmm. And there is the technology, like I had Oh, for sure. A, a remote control that was like, like Bluetooth or something, and it would open the doors mm-hmm. For me to get to my office and, get into the restroom and like that. That's something else. It's even if it has a button to get in the building, like once you're in, how are you gonna get in the classroom into the next door? Yeah. Yeah, exactly. Oh, and it's like the tech's out there, it's just mm-hmm. A matter of mm-hmm. Installing implementing it. Mm-hmm. [00:13:00] Yeah. Yeah. 

Deonna: Even like a bathroom stall. Like I have struggled mm-hmm. So hard in the past just trying to get me and Allie into a handicap stall because if I have to go to the bathroom and she's with me, I have to take her in there with me or whatever.

Right. And I've thought before, how is a disabled person supposed to get, there's somewhere the door swings funny or something like that. And nobody's gonna help you with that 'cause you're in the bathroom. Right. It's weird, whatever. Or

Tye: if the door swings into the stall. Oh yeah. Yeah. That's, and so the worst, 

Deonna: we've had trouble with that. The only place we've ever had people help us in a bathroom with the doors was in Oklahoma. So shout out Oklahoma for that. In Texas you're like struggling and trying to get in and everything. But yeah, I just, I don't know, sometimes parents don't think about. Their child being grown up mm-hmm. And trying to do some of this navigation mm-hmm. On their own. And it's just a whole different ball game, but, 

Tye: oh, yeah. 

Deonna: I have a [00:14:00] random question that I just thought of, but I remember growing up and watching the Jerry Lewis Muscular Dystrophy thing on TV every year, and sometimes my friend Shayla from college would do it, or another boy that we were in the youth group would do it. And so did you ever participate in that in any way, or didn't? How did, I didn't How did you feel about the telethon? Was it good or,

Tye: no I think um, growing up it, it was kind of a, like a depressing thing for me. Was that hard? Yeah. You know, Like I, that's 

Deonna: what I was wondering.

Tye: Even if I didn't watch it was in the back of my mind that it was going on. And for some reason it felt like more of a reminder of yeah. All the negative aspects of it. Mm-hmm. Like it's hard because you do want to make people aware and try to get support. Yeah. Cause, but at the same time it felt like the most depressing thing mm-hmm. Ever to watch it. It was like none of the positives were built up, mm-hmm. And I [00:15:00] think that to, despite the muscle loss, despite the things that it strips away, like the quality of life is something we can have. Mm-hmm.

And there's a lot of us doing really, great things, big things. Yeah. They should be promoted and we do make it to adulthood, that was something else I always felt like. They made it like none of us were ever gonna get to that point, yeah. And even me, I would Google, like life expectancy, stuff like that when I was younger. Oh gosh. And it, the things that go through your mind when, you get all that data thrown at you and there's no treatment that works. Mm-hmm. And so everything is so down mm-hmm. About it. And for me, like I would avoid doctor's appointments as much as I could, like mm-hmm. Like I even found out recently that I had a partially collapsed lung, 12 years. Oh. Really? Ago. I wasn't on a ventilator until 2021. Wow.

And for me, going to school and getting the degree and mm-hmm. Focusing on the things that I could [00:16:00] actually do and that I was passionate about was, I think that it adds gears to. The prognosis too, right? Yeah. But the telethon is always just wonder how you felt about it. Negative to me. 

Deonna: Yeah. 'cause it was a huge thing on tv, but yes. I know that's what sometimes people will tell me, and I'm sure they do this to Rhandyl and you too, but they'll be like, oh, you've got to watch this movie. It's about a paralyzed person. I'm like, oh, okay. I don't know if I wanna watch that. I, yeah, no. I've seen the movies where someone gets paralyzed. Even the other day we were watching Remember The Titans and Yep. That guy gets paralyzed in that movie and at the beginning scene they're like, at his funeral and I'm like, I'm about to have a panic attack. I know this is not a real thing and like whatever, but yeah, it's probably the same thing.

But I was just wondering how you thought about that. 'cause I feel like, yeah, that was a huge, thing in the nineties, and so I don't even think they still do it. Or if they do, I don't know about it. But 

Tye: they did a virtual one, I wanna say a few years ago. [00:17:00] Yeah. But I don't know if they're, I don't know if they're gonna continue that anymore at this point. 

Deonna: Yeah. It was tough to watch for sure. Sure. But it's I remember, 

Tye: It's one of those things just because you're in a wheelchair, just because have the same diagnosis, even that means nothing. Yeah. As far as what your story's gonna look like, it's not one size fits all for sure. 

Deonna: No, it's not. With any disease, usually even same injuries and stuff, it's different. It's crazy. I don't understand it. Yeah. But that's, the human body's weird. 

Tye: Yeah. Yeah. It's, 

Deonna: so you've talked about your degree, what made you want to get a PhD And just tell us a little bit about your, academic path. 

Tye: Yeah. Well, , I was competitive in high school and my mom actually had been valedictorian of her class. And that was what I ended up getting to. And it was nice, it was something that I was just, it felt like I was good at and had a, a good ability to problem solve and work through coursework or whatever.

Mm-hmm. And, once I graduated and went to [00:18:00] college, it was like I didn't necessarily know what I wanted to do. And I chose computer science initially because, I was always fairly tech savvy. Mm-hmm. And I thought that would be something cool to learn about. But I, a few. I guess semesters into it, I realized I didn't necessarily want to go that route a hundred percent.

And it's funny initially I thought, I don't want to be the person, like in a room, like in the basement, like writing computer code and mm-hmm. All of that stuff. But then it's, I ended up in a research project that I still was using parts of computer science mm-hmm. That I learned before.

So it was a lot of. Assumptions on my part as a kid going into it, and not knowing necessarily what the degree was, but but I ended up in, I was always into biology kinda learning like genetics, that kind of thing. Yeah. And obviously with my diagnosis, there's some connections there.

Yeah. But I ended up doing a research project with focused on [00:19:00] Alzheimer's disease and 

Rhandyl: Oh, cool. Trying to 

Tye: understand what the underlying causes were at a very tiny, biological level. Mm-hmm. And so that was using some elements of math and physics and biology and it for some reason that understanding a disease and trying to do research around it, even though it wasn't muscular dystrophy, it was still something I felt, strongly about.

Oh yeah. Um, Yeah. Originally I thought, well, maybe I might be doing research in muscular dystrophy or something. Mm-hmm. But but yeah, the path kind of went a different direction there. But all in all, going through that experience and building the community, it, it took a small village, I feel like, to get the PhD, mm-hmm. Done with family and friends and, undergraduate students that I worked with. And I don't know, it was a really cool network of people to see, come together for that. It 

Deonna: sounds like it. Yeah. I. I think it would take a lot of people. Like I've thought [00:20:00] about what it would take for my daughter to get an undergrad, just like undergrad only.

Yeah. And I'm just like, oh man, that's gonna be a thing. That's gonna be my full-time, thing. But it's worth it to me. And she already wants to do it and is talking about it. And it's okay. But yeah, it'll be a thing. Yeah. But it's worth it. It's worth it. Yeah. , 

Tye: There's ways to, overcome a lot of the challenges with it too. Mm-hmm. And there's, again, with the one size fits all thing, if it takes extra time or more online classes, it's kinda, if it's something that, that the kid's passionate about, like it's, 

Deonna: yeah.

Or 

Tye: there's a, well, there's a way I guess of that old saying. 

Deonna: Yeah. Well, that sounds really intimidating to me. I was not a science person. Ah. Like I feel like it's funny. Minor in 

Rhandyl: biology, but that Yeah. And that was like, I struggled through all of that. 

Tye: Yeah. Well, and the more you know, the less you know, I'll tell you that much.

Oh, 

Deonna: I believe that. Yeah. Yeah. , I did it, and it's funny now 'cause [00:21:00] I used to say I hate science. I hate science. And now I'm, thinking about these types of biology type things all the time. And I'm like, that's, it's like Rhandyl's husband with the trachs, just is what it is.

Rhandyl: So you said that your disability helped spark your creativity and deep thinking. Can you tell us more about that? 

Tye: Yeah. And deep thinking you said was the second part of that. Mm-hmm. Yes. Yeah. Yeah. No, I, I think, I think that with disability in general, especially if it's more severe, like the ways you have to come up with solutions to just day to day, like living things and like even mm-hmm.

For me, like I'll figure out a system and then after a certain time, the progression makes it where I can't use it anymore. So I have to reinvent a new version kind of of myself in a way. And I think also lack of mobility means you're maybe a little more you're gonna be sitting around more or you're gonna be lost in your thoughts more, mm-hmm. And stuff like [00:22:00] that. I think it's good and bad. It's a double-edged sword, but getting into your deep thoughts, is something I definitely feel like is useful most of the time there. But yeah, I think just like the adaptability to life makes it where. Maybe academics or whatever else is going on in your job or whatever you're doing, like that.

I think that does make it where you come up with solutions maybe that aren't. Maybe it's common or aren't ones that people would normally think. 

Rhandyl: Yeah, I bet you have gotten really creative over the years. We, 

Tye: yes and no. 

Rhandyl: Well, I think about just things that we do around our house or in the vehicle, or I call it redneck engineering.

Just things that we do to make our, Hey, that's our life. That's the thing. And my daughter's life a little easier, but half the time, it's not something that we've purchased, it's something that we've just rigged up and they work. Mm-hmm. Exactly. Things, I'm always things when you are laughing to adapt.

Yeah. Yeah. 

Deonna: All the time. 

Tye: Oh, yeah. Yeah. [00:23:00] Duct tape's been my friend in the past. That's all I'll say. 

Deonna: My husband loves to try to figure out, how to make something better than the way the company's made it. And you're just like, oh my gosh, that sounds, usually my husband's usually, yeah. You're like, it was fine.

And he is like, nah, I could do this better. I'm like, okay, you 

Tye: optimize. Right. Whatever. 

Deonna: Yeah. So in 2021, you had a really bad health scare and you were in the hospital for a long time. Can you share what that experience was like with you and your family? Oh 

Tye: yeah.

That was a doozy. Yeah. Yeah. Basically over the years I had some. Occasionally some really bad stomach pains and Yeah. And then sometimes I had a lot of congestion that I couldn't clear out, and so fall of 21, it got really severe on the amount of congestion there was. And Sunday I would go, it would take me the whole day to clear my throat.

Mm-hmm. So obviously meetings would not [00:24:00] be possible. And this was during still peak COVID too. Oh, for sure. So everything was virtual. Mm-hmm. But at the same time, it was like I couldn't participate in half of the Zoom meetings I was needing to do because I couldn't talk, mm-hmm. And energy levels were low there.

And it was just, it was strange. And I wanna say, so it was after Thanksgiving, it was like. A week or two before Christmas, I believe that I woke up and my oxygen levels were like 64% or lower, I think. Ugh. 

Rhandyl: Wow.

Tye: So obviously, parents called the paramedic and I was, I still live, I was living at home with my parents.

They were my main caregivers. Mm-hmm. And we called the ambulance, and that's the last thing I remember. And I'm assuming they had to obviously lift me outta my chair and put me in the back of the ambulance. But I, yeah, once they gave me oxygen from the tank I was out. The next thing I remember, I woke up, in ICU and I had a breathing tube down my throat, basically, and Oh, yeah.

Couldn't talk, and it [00:25:00] was I didn't know. What was going on or like what, how long I was gonna be there mm-hmm. Who was gonna help. And a lot of the nurses, they never worked with anyone with md. Mm-hmm. So all of the things with positioning and I have extremely sensitive joints, mm-hmm. Unless they know what they're doing, that they're, they were like, I don't know how, I didn't get more dislocations or anything, you're please don't 

Deonna: lift me under my armpits. Please don't lift me under my armpits. Seriously. But the 

Tye: joints are so bad. Yeah. And again, COVID, so during Christmas of 21, it was like, hopefully I would get a nurse and there were so many nurses, I must have seen 30 nurses with, being travel, nursing stuff going on.

Yeah. 

Deonna: They don't really work there. Yeah. I, 

Tye: yeah. And luckily I did get one of the doctors' attention to. Try to get my parents in. And so they were allowed to alternate too, and I know mm-hmm. We talked about, y'all's [00:26:00] situation with that. But Yeah. Being able to have one of my parents in there with me every day, I, I don't know how I would've made it through.

Yeah. It wasn't for that. So it was figuring out like, what options did I have for breathing? Mm-hmm. And they ended up doing a tracheostomy after my parents and I talked through it. Oh, okay. And that was, all the things that come with it are annoying, but having your mouth and your voice and everything open again.

Mm-hmm. I don't even know what that would be like to lose the ability to talk again, because that mm-hmm. I didn't take it for granted, but I. With the disease that takes away everything else. Mm-hmm. Your voice is

Rhandyl: it's huge. You wanna 

Tye: hold onto that? Sure. 

Rhandyl: Yeah. 

Tye: It took, I can relate to that, to year to rehab and get back home and, get off half the medications that they put me on and yeah.

That was, it was obviously the biggest pivot I've had to make. Mm-hmm. I couldn't work anymore and [00:27:00] obviously I couldn't be a professor. Yeah. 'Cause they're, they need 90, a hundred hours a week or something probably to do mm-hmm. All the things that need to be done. Yeah. It was figuring out like, okay, well am I gonna need disability benefits and how do I do the healthcare and 

Deonna: Right.

Can 

Tye: I do something even remotely work related anymore? So there was a whole lot of things to figure out. 

Rhandyl: Yeah. Wow. Okay. So I have a question. , Because Deanna and I were on the caregiver side of it, but Right. So you were able to help with making a conscious decision to get a tracheostomy ultimately, mm-hmm.

It has helped your. Quality of life, but in that moment mm-hmm. Whenever you had to, you and your parents made that decision, how was that for you? What side of the fence were you on? Yeah. How did that all come about? Because for me, I can't speak for Deanna, but that was a huge decision for us.

That was one of the main reasons that we ended up transferring to [00:28:00] Texas Children's. With my daughter, when they started bringing up Tracheostomies here at our local hospital, we were like, there's gotta be something, there's gotta be something else. There's gotta be, a 3D printed trachea, like all this stuff.

Yeah. You know, We were like, no. I mean, It took us Oh yeah. A while to get on board with it. But I'm just curious on your side of that, 

Tye: huh? Yeah, it was something we debated really hard for a couple days before. I. But considering where I was with the breathing tube that was down my throat, and then they had one down my nose, you know? oh, it's the worst. It, there was no way that was gonna happen, and things got pretty, pretty dark there, like I, I remember my mom asking me to, just try to keep going because I had been an optimistic, probably overly toxically optimistically before, but 

Deonna: yeah.

Tye: So I like that. I'd never been hospitalized, before and that kind of thing. So I was in a pretty dark place. That's [00:29:00] amazing 

Rhandyl: that you had, that was your first Wow. That's what I was like, that is amazing. I'm surprised 

Tye: still. Yeah. I can't remember the specialist that came in, we reviewed the options and what was on the table there. And we kept thinking, opening up, my, my face again, where I could talk and breathe and have all of that going on was better.

And we thought, well, maybe weaning off the vent would be a possibility as well once we got it. And so I think it was the combination of short term, it was gonna make it where I could function a little bit more again. Yeah. And then long term, maybe wean off of it, which, I haven't done yet but it's, and it's something that I go back and forth on.

Weaning off and but then the medical things that would be required to, to do that obviously are complicated too. But yeah. Do you just 

Deonna: need a vent when you're sleeping or do you So

Tye: I'm on it all 24 7 right now. 

Deonna: I can't even hear it right now. 

Tye: Yeah it's quiet, surprisingly. 

Deonna: Whoa.

What [00:30:00] VIN are you on? 

Tye: It's a trilogy. And I know they're phasing. I know they're gonna be phasing that out, 

Rhandyl: but we have, that's what the one Remy has, and I know Ally just got a new one, ally new ventilator switch over to 

Deonna: the V Home. It's five box. 

Tye: Mm-hmm. Okay. 

Deonna: And it it's been okay. Like I, but it was very , stressful day because, well, actually stressful couple weeks 'cause , it's like a part of your body, and it's oh, 

Tye: totally. 

Deonna: Yeah. It was. It was harder on us to transition than I thought, but Allie did fine. It was me and my husband who were like freaking out over it. She was like, y'all need to chill. I was like, oh worry. I'm seen 

Tye: in the wheelchairs too, right? Like when the wheelchairs are, you're switching to a different brand or something, 

Deonna: any change I'm terrified. I'm terrified for it. It 

Tye: takes days. It takes days. At least I don't 

Deonna: like to change her medical brands. Even, and sometimes we've changed them, been like, oh, this one's better. But I was so comfortable with the bad one that I just, it's so dumb. But that's how we were.

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Deonna: , I'm thinking of 'cause you're telling us these things, like about the trach and stuff and that's what Yeah, like my kid I didn't get to have the conversation. It was like she was sedated. So I basically had to tell her, Hey. You got all this stuff going in your nose and in your mouth, and if you want to get all this tape off of your face, we're gonna have to put a hole in your neck.

And she was like, what? And I said, it is just gonna, be right here. And it was so hard explaining that to a 4-year-old we're gonna put a hole in your neck. Like it was just wild. And the 

Tye: questions Yeah. Yeah. 

Deonna: But I said, , you'll never leave the hospital if you don't do this, so we have to do this.

That was, and she was just like, oh my gosh. Like the conversations we have with our kids or you had with your parents, they're just not normal, it's, they're not, 

Tye: And I can't even imagine [00:33:00] at that age, what that would be like too.

Because thankfully, like I, they had always worked. We always made decisions together, even growing up, mm-hmm. And so I mm-hmm. They empowered me in that way to make it where that's good. It was a collaborative thing, and so at least, even without being able to talk at the time, very much it.

Mm-hmm. It was at least something we could approach together, and that helped a lot. 

Deonna: I respect your parents for always making it a decision of yours as well, because, yeah. That is hard. 'cause I know me and Rhandyl probably feel this way sometimes. You're like, well, I'm the parent and you don't know, so you know, this is what we're gonna have to do or whatever.

Tye: Yeah. 

Deonna: But I try to ask Allie, there are times, like with the trach, I couldn't say, Hey, do you want this trach? It was like, you have to do this. But yeah. We try to ask her as much as we can, but we think that's, ask her a lot of little things right now. Yeah. That don't matter that much. And then, but it is cool and try to simplify 

Tye: it to a point, where it's not [00:34:00] a such a complicated decision maybe, but it's mm-hmm.

Yeah. There's a lot going on there. It's 

Deonna: your body and your life.

Tye: Yeah. Yeah. 

Deonna: It's ultimately your thing, so that's tough on us sometimes as the parents. But it sounds like your parents are good parents to make sure you always felt like included in that decision. Oh, yeah. 

Tye: Yeah.

That makes I just can't imagine not having that growing up, like I, mm-hmm. I know there's kids maybe that don't have that kind of support, and I just can't even mm-hmm. I can't imagine how hard that would be. 

Deonna: Oh, yeah. I just, getting a trach at the age you got one would be hard. I, yeah, I don't know.

It would be tough because you understand what's about to happen to you. Like my daughter didn't understand, Remy didn't understand, like you knew. Yeah. Yeah. 

Tye: And I remember thinking, we gotta I gotta get outta here if I'm going to, yeah. If my life's gonna continue I gotta get out of that mm-hmm.

Space. 'cause [00:35:00] it, it was, it was imprisoning and being in a body already that has physical disability is hard enough. But then you I wasn't getting outta bed, like it was just day after day of, ventilators beeping. And I'm sure all the, all sounds, all the trauma that goes in.

Gosh, yes. Yeah. I've seen, and I still have flashbacks on the, on that. So 

Deonna: I've seen a dad create a rap and the background beats are all of the medical sounds like it is hilarious. And it's triggering, but like we, we just recently got rid of one of my daughter's water heaters that's connected to the vent.

Oh. And we were like, we missed a little boop boop. Oh man. I know 

Tye: that exact one. I know 

Deonna: that's, we were like, we still have 

Rhandyl: that one. 

Deonna: Yeah. We just got a different one that doesn't really alarm, even if it's empty. Oh, that's all good. And so that's not good. But they're like, don't you love how it's not alarming that much?

I'm like well, I want it [00:36:00] to alarm if it's deep. Yeah.

Tye: It's a love hate relationship with the alarms, right? Yeah. Seriously. Yeah. It's like you 

Deonna: have to have 'em, but they're, yeah. They're annoying. Yeah. 

Tye: I'm just realizing like early when we had talked about like songs that we. Found that were meaningful to us.

I'm just like, I could just come up with a list of beeps. 

Deonna: Yeah. It's like that's the 

Tye: soundtrack of, that's now your life 

Deonna: in a nutshell. Yeah. Every time my daughter's pulse socks goes off, she's I'm okay. And I'm like, okay. And she does it all the time, like every, hour and I'm just like, that is really convenient that she can say I'm okay, yeah. But she has said she's okay in the past before, and she actually was dipping, so you can trust her, but that's hard. Yeah. Yeah. Its pretty funny. Even me, 

Tye: I think some days I'm like more congested than others. Mm-hmm. And like I'll hear. My parents yell out or see I'm okay.

And I'm just like, yeah it's fine. It's the same alarm that, you know goes off. It's nothing. 

Deonna: That's what I like talking [00:37:00] about this. It makes me think about, our kids, like me and Rhandyl's are, well Remy moves and can walk and do some stuff. Yeah. Like my daughter doesn't move at all, but Remi is more.

Still mm-hmm. Than maybe another kid her age. And you like we all are not our kids aren't moving that much. And people think that's like our biggest problem. Oh, mm-hmm. Allie can't move. That's so sad. But they don't realize that the lungs and the congestion that usually most people just cough up.

Very easily. Mm-hmm. You can't do that. My daughter cannot do that. Remy. It's hard. Yes. It's like there's not a lot of umph to get Oh yeah. Those things out. And that is the most dangerous thing and things like the 

Tye: mucus plugs can develop so quick. 

Deonna: Oh yeah.

Oh yeah. My daughter had one the other day and she had gone a year without having problems that were significant mm-hmm. And she told us, Hey, [00:38:00] I think I need a new trach. I'm not feeling so, so right. And I said, okay, we'll go do one when we get in your room. Well, her nurse was showing up and everything, and.

You don't think you're in a big old hurry or that it's an emergency. And luckily she can tell us, and she did. And then us like big idiots, waited for about 20 minutes and then she just dropped and her oxygen went down to like 42, I think. Mm-hmm. And you turned blue the whole nine yards.

Oh yeah. And we're in there doing all the, emergency stuff. And that mentally set us back like a little bit. We were just like, , we were almost like out of practice because we hadn't done it in so long. Yeah. But that's how nobody felt on our last 

Rhandyl: emergency. It's oh, everything cruises along.

And then you think, I know, 

Tye: yeah, I know. Happens 

Rhandyl: turn, but just hearing you guys set, talk about like Ty, you're able to. Say, or and let your caregivers know, or [00:39:00] like you be able to do something. Mm-hmm. And then a and then ally like, Hey, I need a trait change. Oh my gosh, if Remi could just tell us that that's our goal.

Goal, like with her device. Especially like we are trying and trying to like, have her go into the page where she can say, help and then it has all the things in there. Mm-hmm. Trach. Just any way for her to be able to tell us like, what's going on. Oh, absolutely. What's wrong?

She currently has a UTI and if she could have just told us that she was hurting, it wouldn't have had to get to that point, 

Tye: and the hard part is there, there is the technology to be able to do that, but at the age, when you're younger learning, Yeah, 

Rhandyl: a learning curve for sure.

And she's getting there and it will happen. I just, it's so much prep, but man. Yeah. 

Tye: And the tech is, I. The backups and things we make sure to have to where I can communicate. Like I have a portable battery charger for my iPad and mm-hmm. The voice to text, obviously you got that.

But then like with a, I have a track pad [00:40:00] mouse that I can use for making calls or, it's nice all the tools are there. It's just more complexity to put in. Sure. 

Deonna: I'll have to tell you about some of the things we use for Allie after this. Yeah. 'cause we, apple has amazing accessibility features built mm-hmm.

Into all their stuff. And we use all of that like switch getting, it's getting better too, which is good. Yeah. The other day when we updated the Apple products, it had eye gaze, which I had never seen before. And I'm like, okay. Mm-hmm. They're really pushing the technology on that, but yeah. Yeah. That's what other's been 

Tye: the affordability factor.

That's the only part. 

Deonna: They're like, we take, we need $8,000, but, we'll, yeah. We'll hook you up. But but no,

Tye: I was gonna mention too though, on the trach, when I. Before I had my speech valve and that communication when I couldn't talk to mm-hmm. Get anyone's attention, even in the hospital, and so I was trying to make clicking noises with my tongue and uhhuh it, it was just I, I know how hard that is to not be able to communicate something right away [00:41:00] with voice. I tried to write notes on paper and I, my muscle strength, I couldn't write without my wrist lifted up, oh yeah. So it's just so many com complex things going on that's 

Deonna: like, when you say that you were trying to click we taught Allie. 'cause if she comes off a vent, she can't talk anymore. Like once she's off the vent. Yeah. Well, I don't know if she can't talk or she. Doesn't wanna try. I am not really sure, but I think it really is like she can't, but she will do the clicking or she'll make a raspberry like farting sound, basically.

Yep, yep. And that's her way of saying Hey, I'm having a problem. Like I am freaking out. And so sometimes she'll make those sounds. When she's fine. And we're like, girl, you cannot make that sound unless you are like, so she'll just be making sounds. And we're like, yeah, what's wrong? She's like, oh, nothing.

I'm like, God, leave scared. Me's like you, 

Tye: you gotta save those noises from when Yeah. 

Deonna: You're [00:42:00] disconnected. That's, 'cause we've all come, our kids or you have become disconnected and the vent doesn't alarm alarm like it's supposed to.

And that, or it doesn't alarm fast enough. That happened. 

Rhandyl: Yeah. Our last big hospitalization we had a decannulation. Yeah. And the vent didn't alarm, so that was fun. Mm-hmm. Okay. So that's back to scary. Yeah, it was very scary. But I was gonna go back to where you, so 

Tye: yeah, 

Rhandyl: this hospitalization, the trach, the vent, you know this, you've called it a reset button.

Yeah. So what helped you cope and eventually adapt to all of this? 

Tye: For sure, my support system, obviously, like mm-hmm. My parents and I think we talked earlier about having a very small inner circle of friends, but like the mm-hmm. The closest friends that, reached out and there was one, she was actually a, worked with me in grad school.

She was an undergrad. I was mentoring at the time. And we had become friends over the years, even after that ended and just like her calling and just talking, even though I couldn't talk. Yeah. Say [00:43:00] anything back, but just visiting and, having communication.

Yeah. And then obviously bringing in my phone. I could watch, something like to distract myself or, oh, for sure. Even the, they had the most ancient TV in the room. I was in an ICU and the, of course the sound was. I kid you not, I think the whole ICU could hear it when it was turned on and like I was able to watch some football or watch the weather or whatever.

Yeah. So that was just little coping things. My mom brought in Christmas lights 'cause it was, holiday season at the time. That helped, and 

Deonna: Oh yeah. And then 

Tye: FaceTime with my sister and my nephew. Just all those little things there. And like now it's evolved quite a lot.

But like my, almost my whole world's on the iPad with I control, like I can make medical appointments, like mm-hmm. Do all the podcasting stuff I'm into, and it's, you guys know probably too, it's like your life is on the technology now. Yeah. So that's, it's allowed me to really have a quality of [00:44:00] life.

That's really good. Now, at this point, 

Deonna: oh yeah. Technology has done so much for disabled people, but I Oh man. Allie didn't have the computer or the iPad? Well, she was watching movies and stuff when we were in the hospital. Yeah. But my husband had seen a TikTok where they were showing you how you use, like the apple switch control.

This guy was like, look, I can control the computer with my face. He was being like, stupid. He wasn't even from the disability community. Yeah. And my husband's like, oh my gosh. I think Allie could do that. But we've talked about. I feel like screen time doesn't matter in the disability community because it doesn't, like that's your entertainment, that's your life, that's your everything, and but Allie loves her iPad. If it broke, we would have to get in the car and go get a new one. Yeah. Right. Then we can't be without it. She loves it. So it's, yeah.

Tye: It's so empowering. I can shop for groceries and mm-hmm. Order from restaurants, 

Deonna: Everything, you can do anything on that thing.[00:45:00] 

Tye: Yeah. And you're right, like the screen time means something totally different now for mm-hmm. For someone with a disability like that. 

Deonna: Yeah. No, it's definitely true.

Rhandyl: Okay. Ty, we'd like for you to go into a little bit about your work with the Muscular Dystrophy Association and then also about your laughing at My Nightmare, what you have going on there, and then yeah. All together. Tell us about your podcast, , Ty Pod podcast.

Tye: Give us a rundown on that. That's yeah. That's my work quote unquote, even though it's mostly volunteering now, but mm-hmm. But that's, my, production and something I'm passionate about a lot is trying to bring in that advocacy now that I, honestly, I never had time when I was in graduate school.

Mm-hmm. I'm bringing in all these elements I feel like that I sacrificed, as a younger adult. But yeah. You know, the, The work with the nonprofits, with laughing at My Nightmare, like that was the first one I started with. And I.

During [00:46:00] grad school, actually at the end I was doing some disability related research, and I found Shane and Hannah, Shane Haw was the one that founded, I think my nightmare. He has SMA. But I reached out about how I could volunteer maybe being a board member. And then it was interesting that was all before the trach and all of that.

And so like I circled back after right. It's like, hey, like I have more time. I want to get involved. And it's been really great getting to know, Sarah, who's, basically the CEO and president of it now. And like I, I actually just recently became board chair of the program.

So it's really cool to see the tech funding that they have to help provide, any kind of technology assistance with people with md, but then they've expanded it to, now they help people with many different types of disabilities, with equipment or special needs that they might, might have.

And then they launched a scholarship program, which was huge for me because like I, I was very familiar with that space. Yeah. So the cost for were, and mm-hmm. So that's [00:47:00] really exciting to see that. They're helping higher education and trying to promote, going to college and that kind of thing.

So that was huge. 

Deonna: So they help get technology into the hands of people that need it? They do. And then they have the scholarship program. 

Tye: Right? Right. Okay. So I think they have, I wanna say they have four programs and they even had an emergency relief fund, like for periodically for people that were facing some kind of emergency situation.

So like it's, oh, I 

Rhandyl: see, okay. 

Tye: It's evolved. That's neat. They adapt to what the needs of the time are,

Deonna: oh yeah.

Tye: Yeah, that's, I love the name of it. 

Deonna: It's, yeah, we all have a little bit of a sick sense of humor. Oh yeah. Oh yeah. Disability community. Mm-hmm. Like people used to say stuff and I'd be like, oh my gosh, are you allowed to say that? And I would be so shocked. And now I say the same stuff.

Oh yeah. But you do have to laugh at your stuff or you're just not gonna make it. Uh, Right. You know, It's, and that's, you gotta find the humor in it somewhere. Having that 

Tye: humor and a little bit of sarcasm, I think. Yes. It always came [00:48:00] naturally to me. Mm-hmm. And so when I found they, had that too, and I read some of Shane's books and it was like.

That's exactly how I mm-hmm. Felt or thought or something.

And then MDA, I am a, an ambassador with their program too. Mm-hmm. And the biggest thing I've been doing with them is some social media campaigns, obviously. And then, 

Rhandyl: yeah, 

Tye: they have a scholarship program they opened up recently too. And so I help with. Getting to evaluate some of those.

And and like that for me, it's so important that emphasis on life beyond childhood, is huge and it's mm-hmm. When I was growing up, I didn't think there was any emphasis on that. For me, I was like, nobody's telling me here's some tools or tips. As you enter adulthood Yeah.

As you're in the workforce, like it's, it doesn't end at childhood for so many of the disability community. Mm-hmm. So like, that's, that's a really big passion that I have now is like showing that yeah, you can have a quality of life, you can make adult [00:49:00] decisions. Mm-hmm. You know, And that's, it's not impossible.

It's definitely something you can do. You just need some support. Yeah. And so that's what the volunteering stuff I'm doing is like trying to bring that, helping that, what, 20 to 40-year-old range or so. 'cause there's a lot of things we can do. Oh yeah. To that point.

Deonna: And I feel like disabled people are so motivated.

Yeah. Like a thousand times more than a typical person. Mm-hmm. Yeah. They want it more. I mean it's just Oh, absolutely. You know, And they can contribute so much and there's more than 

Tye: enough. Jobs that don't require even physical strength that we Oh, yeah. Exactly. Can do. Mm-hmm. Yeah. Yeah. My daughter 

Deonna: Back in the day she used to say, ah, what am I gonna be if I, yeah.

If I don't get better? She doesn't know like the exact prognosis, but I just, yeah. I remember being like, oh my gosh, that's the most depressing thing you could ever ask me. I don't know. Right. And now I'm like, okay, there, there are paths for you. It's not, like I [00:50:00] thought originally it's, exactly, there are paths, but you gotta want it really bad.

Right. Because of what you have to go through. For sure. 

Tye: And I think society has this thing, people that, that aren't familiar think that it's gonna be cured or it's gonna get better. And that's not always if you wait for that to happen, you're never gonna really get anywhere. You're not gonna be able to get involved with anything else.

So I'm just like, mm-hmm. Like that's not. That's not the way to look at it, no. It's like following your life and doing something you love right now is, like that's worth so much. It is. It's like number of years isn't always the thing to look at,

Rhandyl: no. Yeah. And I love hearing you talk too Deanna about that and like how, and to kind of transition and

, most of our listeners, a lot of our listeners are parents that are raising disabled children. 

Tye: Mm-hmm. 

Rhandyl: What would you want them to know from your would lived experience growing up with muscular? Yeah. 

Tye: [00:51:00] Well, the empowerment thing, I guess is still going back to that, the number one thing.

Mm-hmm. To include the kids as much as you possibly can, as soon as you can. Like giving them the ability to make decisions. Is so valuable. That's number one. And again just mindset, like it's okay to obviously reach out for help and to not be, I know we talked earlier about disability.

We're always supposed to be optimistic one, mm-hmm. But it's let the kids know it's okay to not always be okay with it. Mm-hmm. Yeah. Mental health has become this big thing in society where like the people that open up, like they're applauded for that, but if it's disability, that's not always the case.

And mm-hmm. Very true. I think realizing that it's not always positive, but it's not always negative, you know? yeah. It's not black or white there. 

Deonna: There's a lot of mix on that and I even with my daughter,, I kept saying she did a lot of trauma therapy at [00:52:00] the beginning and then we stopped and I kept asking her, do you need to go back?

Do you need to go back? No. I don't wanna go in there and talk about. What I'm going through. And I was like, all right, well, whatever. And I felt like she needed it, but I wasn't gonna like, make her do it. And then, maybe a year ago or something, or nine months ago, she's like, Hey, I need to go back into that.

And I was like, that's what I'm talking. Right. It's okay. But, it was hard 'cause the mom and me wanted to be like, you need to do this. And she only goes once a month. . It's hard to let them do what they feel like is the right thing sometimes, but True.

She knows and, it's, and you know better than we do. The 

Tye: dynamic with being a parent, I think is different too, and as they're younger because it, there is that fine line between 

Deonna: Yeah. 

Tye: Safety obviously, and all that.

Deonna: Yeah. There's lots of times I'm like, well, we're doing this.

Like she, oh yeah, she doesn't wanna get a flu shot. And I'm like, well, we're gonna do it and you won't bill it. So I don't really know why you're really freaking out that much about it, but she doesn't wanna do it, [00:53:00] so whatever. She always talks, I think it's Needles 

Tye: thing. 

Deonna: Yeah. Well we shut her eyes and she's like, have you done it?

We're like, yeah, we're done. But she likes to talk smack to my son. 'cause he obviously can fill his shots and she's like, oh, sucks to be you. Like I can't fill my shot. And I'm like, oh my gosh. But that's hilarious. She's a terrible person sometimes, but 

Tye: yeah, 

Deonna: it is what it is. So what keeps you motivated on your really tough days?

Tye: Yeah, I. For me, like I think a lot of the, seeing what the community's doing, getting online on those days and seeing, oh, mm-hmm. These people are going through this, or they recently went through this, or I can reach out to them and be like, hey I'm down today. What? Like, how are you doing?

What are you going through? Like shared it's weird and maybe actually creepy in a way, but shared trauma or shared stress or, yeah. Oh,

Rhandyl: that's how I feel as well. 

Tye: Yeah, like the [00:54:00] co-host, , my friend Marilyn, who lives funny enough, she lives in, in Texas and has a daughter and they went to Texas Children's to get her daughter's trach put in and all this stuff.

So going to her and sharing stories of oh, did you hear this comment? Or did this RT or nurse give you this issue? It's yeah. For some reason people know this girl, someone inventing it is like that's a therapeutic thing on the bad days. Like it's almost like becoming more negative on the bad days.

But I don't know. Yeah. To be honest, my, my first 

Rhandyl: text whenever there's something like Yep. When I'm so like either upset about something really silly with Yeah. A caregiver situation or Yeah. Or a medical like emergency, she's, 'cause I know she gets it instant, mm-hmm. I can, because I feel like that's from a caregiver standpoint, on my tough days, I'm reaching out to someone in the, yeah.

Similar situation, Deanna. Mm-hmm. Mm-hmm. 

That can relate and honestly relate and not, and [00:55:00] she sends me a funny meme back that's it's just gonna get worse. Yep. Because that's literally if any, if I, and no, you call your mom and she's oh honey, I'm so sorry.

And that's not what, that's not what I need to hear, it's, I 

Tye: exactly. Yeah. 

Rhandyl: Yeah. You have to have 

Deonna: both, but I hear what 

Rhandyl: you're saying for sure. Well, 

Deonna: even. Like when we moved here, so my friend who has muscular dystrophy, she mm-hmm. She just recently moved away and I'm like, ah, man. Mm-hmm.

But um, when we moved here, she reached out to me and she was reaching out to me the whole time. The alley, 'cause she was disabled as a child. She knew how people were gonna treat Ali. Oh yeah. She knew it was gonna be bad, and stuff like that. And she just was like, and she's, she still talks to me about stuff, but yeah, she's, she guided me through.

Every little silly thing. And she's like, okay, if you wanna take Allie to a Texas tech football game, this is how you do it. This is where you sit, this is where you park. And stuff like that. [00:56:00] And it's stuff that no one else knows or can help me with or even understands. And I remember her telling me, there's gonna be a lot of people who pretend to be allie's friend to get attention.

And I thought, what? That was something I had not thought about was that aspect of it. She's like, people used to pretend to be my friend to get attention on certain occasions. Mm-hmm. And she'll know. She'll know who her real friends are. She'll know who the Oh yeah. People are, but that's one 

Tye: of the hardest things.

Like I, 

Deonna: yeah. 

Tye: I feel phases of life you lose. A set of friends at each age group. Mm-hmm. And you figure out which two or three ones? Three. You're really the good ones. Yeah. 

Deonna: Well, and even with me and Rhandyl that's happened, like we've realized who our real friends are when you go through trauma Totally.

You realize you're like, oh, you actually were a terrible friend. I just didn't see it until, yep. Yeah. I need you and you're not there, whatever. But, 

Tye: well, what I like too is it doesn't necessarily mean that friendship will always look the same. That there won't be hard times, but it's you'll navigate [00:57:00] those with the friends that matter.

Rhandyl: Yeah. Right. It's very true. Yeah. I was very eye-opening. Oh yeah. 

Tye: Yeah. Like I. Before social media, I had very few friends that could relate in any way. Yeah. To us. I say you're 

Rhandyl: our age, so I mean you Yeah. You had a lot, you've lived a lot of your life, like without social media.

You were junior high before Dial Up came out. Yep.

Tye: I remember my yeah, I remember my old Motorola cell phone, so yeah. 

Deonna: Oh my gosh. Yeah. My kids the other day were like, we were talking to somebody who was alive before the internet, and I was like, I was alive before the internet. Like we all we're not that old.

Like seriously, but 

Tye: although to them we probably are that. Well, yeah, for sure. 

Deonna: But my kids can't believe. I said we used to have to pay a dime every time we would text somebody. Yes. And they were like, what the heck? How did you afford that? I'm like, we didn't ever text anybody. Like my mom would murder me.

I text someone couldn, somebody couldn't 

Tye: call and be on the internet at [00:58:00] the same time. That 

Deonna: really blows their mind too. I, yeah. Yeah. They have no idea. Even like my daughter, I am very glad that this happened at this time in life, even though there's no. Cure for paralysis right now. Mm-hmm.

Or anything, but there are, advances happening in that, that are technology related. Like I'm trying to think of childhood without an iPad and I'm like, oh my gosh. Yeah, that was rough. 

Tye: I don't know how I did it, to be honest. Yeah, you're, 

Deonna: I don't either. You did it, but we'll have to talk to your mom someday about that one because Oh, exactly.

Yeah. Yeah. She probably is like wishing you'd had an iPad. Sometimes we 

Tye: suffered through some hard times. 

Deonna: Lots of quiet time. Yeah. You actually got bored probably. My kid never gets bored. She like is always doing something 'cause of iPads. 

Tye: Maybe we needed some boredom. I don't know. Maybe that's an important part.

Deonna: Your mind 

Rhandyl: could agree with that. Yeah, I've seen some on that. I'm 

Deonna: like, yeah. 

Rhandyl: Boredom's, [00:59:00] probably not the worst. She'll 

Deonna: tell me, get my iPad, and it'll be just like a maybe 30, 42nd interlude. Yeah. Where we're like moving her. I'm like, girl, you can not have your iPad for a few seconds. Are you kidding me?

Exactly. But she does not agree with me on that, so I'm gonna have to, sometimes I surprise 

Tye: myself too. I'm like, I need a break from that. Just an hour to get away. Yeah.

Deonna: Your eyes alone. I'm like, Ally's gonna need glasses just 'cause of iPad. 

Tye: Yeah. But, 

Deonna: oh, man. Okay. So if you could wave a magic wand or, push a button and change one thing about how society views disability, what would that be for you? 

Tye: I think for me it would be to remember that we're humans too.

Mm-hmm. And well for example like they wouldn't go up to somebody and say something about maybe their, I don't know if their hair or eye color. Mm-hmm. Oh, so you can breathe, what's that? What's that like? Yeah. So I think just realizing we're humans and go through a lot of the same things, even if we look different or are, maybe [01:00:00] we have disabilities obviously, but again, at the core, we're still people with feelings, mm-hmm. I just think more people need to remember that. 

Deonna: There's so many people who will come up and ask my kid incredibly personal, body information or medical information.

Yeah. And I'm just like, dude, no. And I, that 

Tye: probably bothers you a lot more than it does her, right? It 

Deonna: might, it depends on the day, but yeah. Yeah. The, but we've talked about this and you aren't supposed to go up to somebody and ask them to rehash the worst days of their life. In the grocery store or something.

Mm-hmm. You have to think about, how that's gonna affect the disabled kid. I know one time somebody was talking to Ali and they were disabled as well. Yeah. And the guy said, yeah, I just some days I just don't even wanna live anymore. And I'm like, dude, no. Wow. You cannot say that in front of my child.

Who possibly has had those [01:01:00] thoughts I don't know. She would never tell me if she's had those thoughts, but 

Tye: Right, right. I know there's times where, but they don't need the influences. Yeah. Yeah. 

Deonna: And so you have to remember like, you know, , I mean, you an adult. I feel like people probably now might say, hopefully say less dumb things to you 'cause they know you're an adult, but 

Tye: probably not.

You be surprised 

Deonna: but yeah. Yeah. Ugh. But people say crazy stuff in front of our girls, and I'm sure you heard that a lot as a kid. Mm-hmm. Or they were talking to your mom about you and you're like, hello, I'm sitting right here. I can hear you. That still 

Tye: happens a lot, by the way. Yeah. Yeah. Dang, that's 

Deonna: ridiculous.

Tye: Like being bypassed, you know, like you can't make a decision. Mm-hmm. Or like even there's been a few restaurants where I have to get the waiter's attention to take my order because they just skipped right over. I'm like, Hey. I can order sitting here, oh man, 

Deonna: it's yeah.

It's when we're in restaurants people will look at me. Oh yeah. To answer, to order for her. Yeah. And Allie always [01:02:00] says, I wanna order myself. I know what I want and I wanna do this. And she does. And then, a lot, I like a lot of waiters. And it's usually like the college guys who are super cool about it, they're like, yeah, what do you want girlfriend?

And they're like, super sweet to her, but it's that makes 

Tye: difference. 

Deonna: But some of these, waiters, they just make me laugh so hard because then they switch on the baby talk and I'm like, oh no. Ooh. Here we go. The 

Tye: infant stuff. Yeah. Uhhuh. Yeah. 

Deonna: Please tell me people don't do that to you still.

'cause like I would, 

Tye: do you do, either one of you like have to have do you help your daughter eat or anything? Mm-hmm. Or hold up Yeah. Food or drink like 

Deonna: Yeah. 

Tye: Have you had any, I'm sure stares or people like looking like how do constantly that part? 

Deonna: Constantly, yeah. Yeah. I have to feed my daughter pretty much exclusively, like all the time.

Yeah. Too. She has the OBI robot, which you can use to Oh yeah. Feed. I've seen that. But , it is a really cool device and everything, but , when you're out in restaurants or just in a hurry, it's [01:03:00] easier just to do it yourself and you don't wanna 

Tye: Load up each little bubble of mm-hmm.

Deonna: Or dish of 

Tye: food and, there's a lot there. 

Deonna: Yeah. You have to do that. But yeah, we both feed our kids. Yeah. We feed Remy and 

Rhandyl: all the time she, yeah. She goes to school and the nurses feed her and mm-hmm. Yeah, I do deal with

Tye: the. 

Rhandyl: So star really, stares in general, it's just yeah, it's, we just say hi.

I usually just look at them and just ask, Hey, how are you today? And that usually they, either they'll stop staring or they'll actually like, ha ask a question or just speak back, we're just, this is our daily thing. The stairs used to bother me so much more in the beginning, like when I first mm-hmm.

Really started taking Remy out in public for just for a long time. It, not a long time, but like for a year or so there, it was just, we would only leave the house for a medical appointment. And so once we really started getting out into the community [01:04:00] like the stairs killed me, and I would just go home and cry because I just, I was still. Longing for that typical being able to take my kid to a pumpkin patch or mm-hmm. Without all everybody just staring and at us. And now I've definitely gotten over that and I just know it's part of it. Yeah. But it's still, I have my ways of just, I don't know.

Killing 'em with kindness or depending on the day, just you better look away, you better look away. Something else. 

Deonna: Yeah. I had the experience of, having two typical kids, so I was just able to fly under the radar. You'd run into a store, nobody would notice you.

And then all of a sudden everybody was noticing us and I think it bothered my son more than anybody because he just was like. What it's so annoying. [01:05:00] Like, why are you looking at us? And I was like, well, I think sometimes people are just trying to figure us out. Like they, they've never seen a person with a trach before.

That's a pretty typical thing. But 

Tye: yeah, 

Deonna: it is funny when you have a little girl you, and this sounds really stupid and like vain, I feel like I always have to have her put together very well. She's gotta look like very, I don't know, like I can't explain it the right way, but just like I.

I have to, I sometimes I feel like we have to have it all together looking. Mm-hmm. So I have to make sure she looks cute and her hair's done, and she looks like good because everyone is going to be looking at her. And then it's stupid. But even me I used to go out looking full blown, I woke up, rolled out of bed pajamas, yeah. Well, now everywhere I go, I think, okay, everyone's gonna be looking at me like, I've gotta look like I am put together. And like that this hasn't ruined my whole you know what I'm [01:06:00] saying? It sounds hilarious. Stupid, but 

Rhandyl: no, 

Tye: you, I know I'm the opposite. 

Rhandyl: So I'm the opposite with myself.

But like with Remy, I'm the same way. Like she's always. Her hair's always cute. She's always got a cute outfit and five backup outfits, because very well taken. We know we're gonna go through a lot. Tear off. Yeah. Yeah. And then, but for me, like I was the girl, pre Remy, I wouldn't leave the house without makeup.

I wouldn't leave the house without my hair being done. And then after, now I, half the time I'm not even wearing a bra when I leave the house. Like I am, like a hot mess. And people are looking at you and I, 

Tye: yeah. 

Rhandyl: I'm like, but no, but I know what you mean. Especially if Remy's gonna, if we have her , you just expect the stairs.

Mm-hmm. And it's just, it's what it's, yeah. 

Tye: And actually I really relate to that because , like prior to the ventilator mm-hmm. I was always like, I had to put on shoes even though I didn't need them. I had to have mm-hmm. Like the [01:07:00] professional like polo shirt. Mm-hmm. And just the right way and, comb the hair right and everything.

And if I was getting fed, I would time it where, I would take a bite when someone wasn't mm-hmm. Looking or anything. And now like post ventilator, my, like I have to wear a like salon cape sometimes. Mm-hmm. To cover, everything that I need to protect or Oh 

Deonna: yeah.

Tye: Something. And everything now I feel like with the van people, I, they act or they seem to notice more mm-hmm. Than when I was in the power wheelchair. And that's weird to say. 'cause. It sticks out. But yeah, the 

Deonna: ventilator and the trach just brings so much attention to It does you And to our kids, because it's just so different than even just a kid being in a wheelchair.

And kids will come up to me and the kids don't bug me. Like kids will be like, what's that? Yeah. And I'll just be like, oh, she can't breathe unless she's hooked up to that. Yeah. Like she has to have it. And kids are just like, okay. And they run off and it's who cares? But [01:08:00] adults kill me.

Like the questions are so funny and sometimes I'm like, do you not have a basic understanding of how our body works, but they don't. But no yeah. Yeah. I don't know. The stairs is hard and I do think, like with my daughter who's cognitively knowing every single thing that's going on, as she gets older, I don't know.

'cause she's still like a little kid. So stuff like, being fed in public and stuff like that. She hasn't really acted like that bothers her. But I think as she gets into high school and is at school with other kids I think stuff like that could get harder. Like it, yeah, I hope not, but I feel like that's a silly place to live. Like for me. It, yeah. 

Tye: Yeah. Yeah. For me it's definitely gotten harder, like 

Deonna: I, I'm 

Tye: more self self-conscious about it. Mm-hmm. But at the same time, it's I'm not going to not go out or not go do things, so it's, there's acceptance, all over again.

Deonna: No, I feel like disabled people have to be. So confident about [01:09:00] everything and it's so hard. Like my daughter will volunteer to be up in front of people and I'm so nervous for her and mm-hmm. She'll do these things that I didn't really think she would ever do because I was like, and sometimes I'll accidentally project an insecurity to her.

Mm-hmm. And then I'm like, oh my gosh. Like I told her recently, I'm sorry, you're gonna have to start wearing your AFOs to school. Your pt. Wants you wearing them more. Yeah. And I, you know, if the kids talk about it to you, just say, I have to wear these. And I'm projecting this insecurity to her that she may have not even had, and she's like.

It's fine, but she did wear 'em. And she said, nobody even commented about it for three or four days. And I'm like, mm-hmm. Well that's good. 'cause it, in my mind that was gonna be a big new thing while the kids didn't even care. 

Tye: But, and honestly that's one thing about your daughters growing up, at a younger age with disabilities.

Mm-hmm. I feel like they're gonna be even more confident, more, be able to [01:10:00] convey things better than, someone who gets like loses more later. You know what I mean? Mm-hmm. If they're dealing with it now, it's not gonna be as big of a problem.

Deonna: Yeah. No, I agree with that, but ugh, I don't know.

Tye: It's, yes, it's a hard thing. It's a tough one. 

Rhandyl: So what's next for you personally, academically in your advocacy work? Yeah. Do you have plans 

Tye: like, definitely the podcast that I'm doing is constantly evolving and I'm trying to Yeah, tell us about that. Yeah, well, I call it the tpo, which is one reason I enjoy a short name that rhymes is I love it.

Yeah. The work play going on. But no I'm trying to bring in, people from every part disability, like I, I'm even trying to branch out and get some nurses, the doctors on now, and Oh yeah. And obviously like patients and caregivers, like I, I've been talking with them a lot, but just, I feel like there's so many people that.

That have a hand in the disability community. So I'm trying to bring those voices in and not just the big [01:11:00] influencers, which they have. They're important too, but like the people that mm-hmm. Don't, they haven't been able to get their story out there. Yeah. There's so much uniqueness, it's crazy.

And even today, like I, I talked with another person, coincidentally, that lives close to Lubbock, which I guess today is the Lubbock like theme or whatever. We're like, how proud do you know them? Yeah. But but it was like, they talked about experiences at the Olympics, at Paralympic games as a volunteer and things like that.

But it's just, I really wanna bring in more of those voices and share it. And then also I'm trying to get brave and try a solo type episode just talking about something important to me. It's just a whole different dynamic. I don't know how that's gonna go but just.

Continuing that effort. We're trying to get more out there on, on that, and yeah, also keep working with land. Try to keep, the higher education funding going. Mm-hmm. Because I think that's still gonna be important for people with disabilities. Oh yeah. For sure. So yeah, and then going back to some academic type stuff, like I, I do have a couple of [01:12:00] academic papers that I'm actually helping Oh, awesome.

With disability related, which, I'm not the professor now, but I'm still using some of those skills, obviously to keep going. Yeah. So That's great. That's kind of it. And enjoying doing some fun things, trying to get out and spend time with the nephew, that kind of stuff, aw.

Yeah. 

Deonna: You said he is four? 

Tye: Yeah. Yeah, he is four. 

Deonna: Oh, that's a funny age. So much energy. Yeah. I know. You're like, ugh, jealous. Oh yeah. Oh, man. . You're off to a good start with a podcast, and it is. Yeah. I like what you said about trying to talk to doctors, nurses, and all these different types of people, because even if they haven't been, in their home affected by disability, like our Right.

Allie's, PT and OTs, they're a part of our life and our family now. Yeah. And they don't understand as much of exact day to day, but yeah. They have a lot of experience with a lot of different types of disabilities and things like that, so that would [01:13:00] be a good one, I think, for sure.

Yeah. 

Tye: And I know that at times, I've done it too. And I think a lot of people have talking negatively about doctors or health 

Deonna: Yeah. Professionals. But they're 

Tye: do that sometimes they're not all bad and they have their own stresses and own things mm-hmm. That are going on, sure. It's it's a lot of pressure. Definitely. And trying to be more open to hearing their side because they're human too. Mm-hmm. 

Deonna: Yeah. Idea. Well, at the end of the day, they're trying to help us. It might not always feel that way, but that's what they're trying to do. 

Tye: And the intent is usually good.

Yeah. They're 

Rhandyl: part of our village, whether we like it or not. Sometimes like you, you avoided for so long, 

Deonna: they live like right outside of the village where they're not exactly in

Rhandyl: on the gate orders from the village. And that's, yeah. Oh my gosh. Um, Yeah. That's hilarious. Well, thank you Ty so much. This has been. Such an amazing conversation and we will [01:14:00] share your podcast in our show notes. And we just really thank you for all the advice and insight in mm-hmm. Your life and 

Tye: Yeah.

Well, it's been really good and I sure appreciate, like you, you both, doing what you're doing and bringing in voices too and sharing. It's it's only gonna help it grow and make things better. Mm-hmm. 

Deonna: Well, thank you so much.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.