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Episode 2: Dr. Ted Conway
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In the episode of our show, we hear from Dr. Ted Conway — well-respected biomedical engineer and professor with cerebral palsy. As an accomplished academic researcher, he received advanced graduate degrees in Theoretical and Applied Mechanics in the College of Engineering at the University of Illinois at Urbana-Champaign. During his Ph.D, he became a Summer Federal Employee for the Department of the Navy at the Naval Underwater Systems Center in Newport, RI and the Naval Research Laboratory in Washington, DC.
In this episode of Cerebral Palsy Grows Up: The Podcast he joins our host, Alexa Orban, to talk about aging with cerebral palsy, life before the Americans with Disabilities Act, and his incredible contributions to the field of biomechanics. For anyone with CP looking for wisdom from our elders, this is one episode you won’t want to miss!
Follow
Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Alexa Orban on Instagram @lexi_orban
Credits
Host: Alexa Orban
Producers: Katy Gaastra, Kyle Khachadurian
Executive Producer: Ashley Harris Whaley, Rachel Byrne
Graphics: Briana Raucci
Recommended
Transcript
Introduction to Adults with Cerebral Palsy
00:00:11
Speaker
Welcome to Cerebral Palsy Grows Up. Join us as we dive into the unique experiences and stories of adults living with cerebral palsy. We hope that as you listen, you feel a sense of camaraderie and community.
Meet Dr. Ted Conway
00:00:24
Speaker
Today, we're joined by Dr. Ted Conway, who is a distinguished biomedical engineer with Cerebral Palsy. His work has focused on biomechanics, medical devices, and tissue engineering. A significant portion of his career was spent working in the field prior to the passage of the Americans with Disabilities Act. I was excited to hear him talk about how he worked without the support of legal protections as a young professional. Hello, everyone, and welcome to Cerebral Palsy Grows Up, the podcast.
00:00:53
Speaker
Today, we're here with Dr. Ted Conway to talk about aging with cerebral palsy and the concerns of growing up as an older adult with CP. So Ted, I'd love for you to introduce yourself and tell our listeners a little bit more about you.
00:01:07
Speaker
Sure. My name is Ted Conway and obviously I've been living with CP my entire life. We've tried to work around that and this has had a career in engineering primarily but disability advocacy and other areas which I assume we will we will discuss in more detail as as we
Career Beginnings in Chemistry
00:01:28
Speaker
move along.
00:01:28
Speaker
We definitely will. I mean, what I've learned about you is you've led such an accomplished career in the field of biomedical engineering. And I would just love for you to share a little bit more about your work and research. Sure. I'll give you a brief history. um but I guess anyone's career, when you look back, there are a lot of twists and turns that that have been unexpected.
00:01:51
Speaker
When I started out, I received my bachelor's degree in chemistry from Florida State and my very first job out of college was actually working in a mining company in South Georgia.
Transition to Biomedical Engineering
00:02:03
Speaker
Now you wouldn't expect a person with CP to to be actually working in mining, but and When you're young, you know your body is much more responsive. So I was able to climb ladders and get around the site ah in in Georgia. And I've worked there for two years as the quality control director and the safety director. But I wanted to do something a bit more challenging from ah from an academic standpoint. So I moved to Michelin Research and Development to Company, the attire company and in South Carolina as a polymer chemist.
00:02:38
Speaker
And I took engineering courses at night at Clemson University and became a polymer engineer as well. But it was going to take way too long to get my engineering degree. So I actually, with work, sold everything that I owned. I had just turned 30 and packed everything in the back of my car that that I didn't sell. And I moved to Champaign-Urbana, Illinois.
00:03:01
Speaker
I started graduate school at the University of Illinois in engineering, and i after five years I received my PhD in theoretical and applied mechanics, which is the the the background work in mechanical engineering, civil engineering, materials engineering, and biomedical engineering.
NSF Grant and Biomedical Focus
00:03:19
Speaker
It's the fundamental principles that can be applied to all of these different areas of engineering. And my thesis topic was creating a mathematical model for the mechanical behavior of helically wound polymeric structures. Now that's a mouthful, but basically it's looking at ropes and looking at how ropes respond to different types of loading conditions. So axial loading, can it carry a a heavy weight? Can it bend around a pulley of some sort?
00:03:50
Speaker
And I really wasn't doing any work in biomedical engineering at that time. So I took a tenure track position when I graduated at the University of Akron in the mechanical engineering department. And after about two years, I'd been applying for NSF grants. I received a a National Science Foundation career grant, which at the time was a very prestigious grant for for new faculty.
00:04:16
Speaker
And the application was in biomedical engineering and I was actually applying my thesis topic to ligaments and tendons because those are polymeric axial load carrying structures in the body. So I took my wire road mechanics and applied it to different structures in the body and that's how I made the transition into biomedical engineering.
Challenges Before ADA
00:04:40
Speaker
And from that point on, all of my funding has been in biomedical engineering, as well as ah tire mechanics. Because again, tires are polymer structures, they're reinforcing components are polymer structures. So I did a lot of work in tire mechanics as well as in in human body mechanics.
00:04:59
Speaker
Yeah, it just sounds like you're interested in the way that the world works, right? Like figuring out the different ways that things are put together. My dad's very similar. Actually, I'm very versed in polymers. He's an inventor. So he actually has created um an invention using that. So it's i we get plastic news sent to our house very often. So it's cool to to see that synergy there and you know figuring that out. But I love the way that you said you know it connects into all of the work that you did in um biomedical engineering, do you think that it really shaped the route that you started to go once you started this project with tendons because of your CP? Or was this just a route that it sort of happened after other projects? You know, I'll i'll be quite honest with you and in in the early part of my career,
00:05:47
Speaker
CP was a challenge for me personally, but I i had not become enlightened enough, I think, at that point, to be an advocate for the disability community. That that came along um later, and and I'll tell you a story about that as you know as ah as we we move along.
Influence of Virginia Stern and AAAS
00:06:06
Speaker
But at this point in my career, I was really trying to do all of the things that were expected of a tenure track faculty member in ah in the mechanical engineering department at Akron so that I would gain tenure, which I did, and promotion to associate professor at that time. And again, CP was I had to do a lot of traveling.
00:06:26
Speaker
and CT was always a challenge in traveling but it was it was my own personal challenge and I know later on we're going to talk about before the ADA and after the ADA and and I came of age before the ADA so disabilities at that time were more of a personal challenge and if I wanted to participate I had to figure out a way to get around the disability.
00:06:49
Speaker
and know i I couldn't rely on my my environment or my society to do that. It was really my challenge. And I i kind of relied on that mindset as ah as my early career developed. Yeah, because you did come of age at a time where people with disabilities either couldn't be as loud and proud as they are today. um So can we unpack and talk a little bit more about that?
Advocacy and Leadership Growth
00:07:13
Speaker
Sure, sure. And in 1993, this was a pivotal year for me as far as becoming ah an advocate for the disability community and and really, I guess, revisiting my own disability and and as a member of the disability community. I met a woman, Virginia Stern, who was heading up a disability program with the American Association for the Advancement of Science.
00:07:40
Speaker
And it was just a fluke that we met. We were at a an ASE conference, American Society of Enduring Education Conference, and it happened to be ah held at at the University of Illinois in Champaign-Urbana. So there was, at the beginning of the conference, there's always a big barbecue, an outdoor barbecue. And my wife and I were where we're at the barbecue, and we sat down at the picnic table, and we were eating.
00:08:07
Speaker
And a woman comes up and and it was very crowded. So a woman comes up and she says, do you mind sharing the picnic table? And I said, no, absolutely, please have a seat. And she did. And it was Virginia Stern. So I struck up a conversation. She was telling me what she was doing at at AAAS, at the American Association for the Advancement of Science, how she had been involved with the Americans with Disabilities Act back in 1990.
00:08:32
Speaker
getting that and working with the disability community. She herself was not disabled, but she was a strong, strong advocate for for people with disabilities. And she saw that I was walking on crutches, so which is how I get around with with my CP.
00:08:49
Speaker
I have spastic paraplegia and so it it basically affects my lower extremities, my legs, and so I use crutches to get around and she had she had noticed that. So she invited me to be more involved with AAAS.
00:09:04
Speaker
at that time in my career development, I thought, well, but you know, I really focused on in publishing papers and in getting grants and teaching classes and all the things that are related to career development. But part of that is community service. So she invited me to Washington. Make a long story short, I did a lot of work with the with the AAAS, which a lot of meetings around the country.
00:09:28
Speaker
I met with a lot of people with with disabilities, and eventually I ended up sharing the AAAS Committee on Opportunities in Science for underrepresented groups in general. so these were and And this is for STEM, Science, Technology, Engineering, and Mathematics.
00:09:44
Speaker
and I'd shared the committee for three years. yeah it was It was very rewarding because I was able to meet leaders around the country in in disability activities and and disability rights development.
Balancing Identities and Community Advocacy
00:09:57
Speaker
Because of that work, I was actually elected to the rank of fellow with AAAS in 2016 for my work in disability advocacy.
00:10:05
Speaker
And it was it was a ah really eye-opening experience for me, and I really felt like a ah member of a community that I had not participated in up to that point.
00:10:17
Speaker
I love that. I love that, you know, going back to the beginning where, you know, you just sat down at a picnic table and you had no idea where that was going to lead you. But I think that there's just so many amazing conversations that you can have. And I have a similar story where, you know, I started to share my story living with CP on social media, and that's how I got connected to so many people. So just through talking about your experience and having those conversations, it was a snowball effect.
00:10:44
Speaker
to everything that you know you started to do in the disability space. So that's absolutely amazing. And I think something important to call out because sometimes for me especially, I don't always want to talk about CP as my identity. I want to you know lead as who I am as a person.
00:11:02
Speaker
But I think that there's so much that can can come into all of it where you realize that the pieces of who you are as a person can also lean into who you are with a disability too. So I love how you were were able to you know continue doing so much with your work and also have that space and in disability advocacy as well.
Societal Shifts Pre and Post-ADA
00:11:22
Speaker
I'd love to talk about you know the biggest difference with living with a disability pre the ADA and post the ADA.
00:11:29
Speaker
Sure, I am and I actually want to talk about some of the work that I did at the National Science Foundation as as well and tie into this I I I was born in 1955 so I will turn 70 next year. I am officially old it especially for people like you and you know and and so but I feel like it's very important that I i I pass the baton on to your generation so that, and and with the, I guess, with the experiences that I've gained and and the things that I've learned along the way. And so before ADA, before 1990, there were some laws that required greater inclusion of the disability ah community, but not really ah creating adaptive technology for full inclusion.
00:12:24
Speaker
So for example, participation of a person with a disability in an activity back in the 60s, which is when I was in school, i was basically sitting on the sidelines watching other kids have fun.
00:12:38
Speaker
And that really, yeah that didn't work. Now for me, it was really up to me to figure out if I wanted to participate, I had to come up with ah with a solution to do that. Society wasn't gonna do it for me. Now I had a strong family ah network and my family never treated me differently because of ah of my CT, except for things you know that had to be adapted to because of my yeah my mobility issues.
00:13:07
Speaker
So I grew up in an environment where I really wasn't treated very differently and I didn't see myself as a person with a disability because I was surrounded by people without disabilities and that was a reflection back on me.
00:13:20
Speaker
I really didn't get into that community and see that community until well into my career development, as I said, as ah as a professor, working with the disability community and and seeing disability is is as ah as diverse as anything you can think of because you know we're all part of ah ah a very large community.
00:13:41
Speaker
and and we want to integrate, we want to be seen for what we can contribute and not what our challenges are. But our challenges make us who we are and give us compensation skills and give us creativity to solve problems that other people on a day-to-day basis don't have to deal with. I think from from my perspective in ADA,
00:14:04
Speaker
The problem solving was my responsibility, and I didn't have a lot of resources. Now, after ADA, the ah there were more resources that were available. They started to evolve. And I could go online, or I could talk to people, or there there were there were networks that I could go to and say, OK, I've got this particular challenge. And you know has anybody else solved this problem? That network didn't exist before ADA.
00:14:30
Speaker
And I don't know if you're familiar with the University of Washington in Seattle. There is a program called DO-IT. And Cheryl Burtstahler, in fact, at that University
Perseverance and Problem-Solving Skills
00:14:42
Speaker
of Illinois meeting with that with Jenny Stern, ah Cheryl was giving her first presentation on her first grant with NSF in 1993 to create a network for technology related to addressing disability issues.
00:15:00
Speaker
And now you can go online. It's D-O-I-T. Go online. And it's a full warehouse of every technological tool that can be used for any disability you can think of. So then you know that's that's been, what, 93? That's a little over 30 years since she's been working on this project. So that that year, 1993, was a real pivotal year for me.
00:15:22
Speaker
as i I met Cheryl and I met Jenny, who were are both green extreme, extreme, extreme. It's for the disability. That's amazing. When I and look at the disability community, because I i also work in um accessible tech. So when I look at just, you know, all of the adaptations and just there's so many resources out there, I really think it's a true testament to um people living with disabilities to just be so great at pivoting and allowing themselves to overcome challenges in their life. Like I say, like we we are just so apt to saying if, if plan A doesn't go well,
00:16:01
Speaker
our brains are already taught to have b through z set where so many people you know there there's that aim for perfection i definitely have that too but sometimes i show up knowing i'll probably fail my body will maybe fail me you know what i'm trying will fail me and i think that's something that.
00:16:19
Speaker
a lot of people don't gain that tenacity right away. So to have that from such a young age to then create these programs for so many people, I think it truly is a testament for us to just say like, how can we pivot and how can we just be the great adapters that we are?
00:16:36
Speaker
Yeah, and in fact, um and and you you said it very well, one of my arguments for a greater inclusion of the disability community is is problem solving and coming up with solutions to problems. as As a professor, I was always looking for students, you know for graduate students, for example, working on their PhD, they needed to have three qualities. And disability certainly wasn't one of those qualities. But the three qualities were great problem solving skills, really superior problem solving skills.
00:17:06
Speaker
creativity to solve those problems because when you're doing your PhD you're doing work that nobody else has done so you have to be creative in your problem solving and in the way you approach the problem and most importantly perseverance I mean you you know you' you're going to run into challenges you're going to run into I remember as a graduate student I I had a problem in in some software that I had developed and it it just wouldn't work. I tried so many different ways and it took me two weeks. and um There was one variable in my thousand line code that I had not normalized the variable. So I needed to divide it by another variable to normalize it. Once I did that, one one piece of data in one line of code, the whole thing worked perfectly. But I had to find it.
00:17:53
Speaker
and it didn't it didn't just pop out at me. So my argument for inclusion of the disability community, what is the one group in society that has inherently got superior problem solving skills? Creativity to solve those problems because these are not normal problems, these are problems that are that are ah related to each individual. And most importantly, because I don't want to wake up tomorrow saying, you know, I'm not going to be disabled today. I'm tired. Perseverance. You just have to persevere through the disability because you don't have a choice.
00:18:25
Speaker
you're going to be disabled with with respect to your ah your your disability and you just have to live with it and move on. So my argument is to come up with these great problem solvers and and and great graduate students have to have superior problem solving skills, creativity to solve the problems and perseverance. And that's exactly what you just said.
NSF Work and International Collaborations
00:18:49
Speaker
Yeah, because I, you know, I mean, even from a young age, I know you feel this way too. and And I think it's interesting that you even said, you know, you didn't necessarily think you were disabled because you weren't surrounded by anybody else. That was very similarly to myself. You know, I would always wonder why my body was different.
00:19:08
Speaker
But I just adapted and i I figured it out all along the way. And now I look back at 8, 10, 15-year-old Alexa and I was like, well, this makes so much sense sure as to why i you know I used my body in the way that I did and I adapted and I i gained through all the problems.
00:19:26
Speaker
Um, but I love how you said, you know, you do have to show up like this is the body that you show up in every day. Um, but I think it also comes back to giving yourself that grace, right? Like if your body can only function at 30% that day, like that's your 100.
00:19:42
Speaker
right So I think ah it kind of flows into exactly where I'd also love to talk about, you know, is as we age with cerebral palsy, because I hear a lot of people in their 20s and 30s with CEP talking about feeling like they're old in their bodies already. And I don't know if that makes you laugh, ah um but how would you describe what it feels like to be in your body at this age? Well, you know, normal aging.
00:20:08
Speaker
Again, there's there's I think there's an old English salutation, I hope you live long enough to be disabled. I mean, that's paraphrasing. But if you live long enough, you will lose a a a major life function to the point where it becomes disabling.
00:20:23
Speaker
yeah bad knees or bad vision or bad hearing or whatever it happens to be. um If you live long enough, something's got to wear out to the point where, you know, it drops below a particular threshold and then it's ah considered a disability. Well, we're born with a disability.
00:20:39
Speaker
and then aging builds on top of that. So I'm going to go back to a job that I had as an academic working with AAAS and I was really introduced to the to the behind the scenes at the National Science Foundation. So in ah I ended up going to and NSF as a program director for eight years, and I ran a program called General and Age-related Disabilities Engineering. It was in the engineering directorate, and the the the division was chemical, biomedical, environmental, and transport systems engineering.
00:21:16
Speaker
And I ran the GARD program, so G-A-R-D, General and Age-related Disabilities Engineering, because a lot of the technology that was adapted for the disability community could also be adapted to the aging community. And I'll tell you a funny story. Before I changed the name of the program to GARD, it was called RAPID, Research Dated Persons with Disabilities.
00:21:39
Speaker
And it was part of a it's called research dot.gov and any anyone, any American to go in there and and look down and see if you just type in disability, come up with all these different programs. So the rapid program would pop up and and many, many people thought it it wasn't a scientific research program. It was more of a social welfare welfare program.
00:22:01
Speaker
So I got a call from a woman in Michigan one time. I was in Washington. I got a call from ah ah a woman in Michigan and said, I am so tired of sitting here in this snow in my wheelchair. I want a million dollars to move to Florida.
00:22:17
Speaker
And I had to say, well, I can understand the frustration, ah but but we're a we're a research ah funding program here at the National Science Foundation, so you'd have to come up with a research grant, and and you I tried to explain it to her, but I'll never forget that conversation, because she just, she thought the government would give her a million dollars because it was called Research Date for Sons of Disabilities, and she could go buy a home in Florida and and you know be be happy.
00:22:46
Speaker
So that's the main motivation that i actually changed the name of the program. I wanted to have the word research in the program and engineering in the program and disability. So I came up with that name. So I changed the name. And then I really, I got to see a lot of technology with that program. NSF sent me around the world to see what other countries were doing in disability engineering.
00:23:11
Speaker
So I've traveled to just about every country in Europe, I've been to Korea many times, Japan, especially Japan. Japan has a lot of technology that can be adapted to the disability community. Even China is doing work in that area, and Australia's got great research going on, and especially in CP research, ah but in in general a lot of good research in biomedical engineering as it relates to disabilities engineering.
00:23:36
Speaker
So that was a real eye opener for me. And I got to really see the international network of in the disability community. That's amazing. And so, you know, as as you had those experiences and traveling and doing all of the things that you were doing, you know, how did you adapt, especially at this point in your career, to to being able to go to all those places and, you know, take on all the projects that you were?
00:24:02
Speaker
Yeah, that's that and and as I got older, it became more and more challenging. In fact, there's there there there was a point where I had to to cut back because my back and my knees, those are the two areas that I've had the most trouble with.
00:24:18
Speaker
Those so those were were wearing out. at At my age now, I've got disc degeneration in my back and I just had a fifth surgery on my knee for a total knee replacement last month, actually. And it's ah it's been a real challenge. So, you know, during the the eight years that I was in SF, I had to to you know slow things down a little bit. I didn't want to, but I just had to. And then I had to to relying on on ah adaptive technology. so would We had handlers that would would travel with us and I just made sure that you know I didn't have to do long-distance walking, ah which I could do when I was younger.
00:25:00
Speaker
and i didn't you know it ah I just had to make these accommodations as I as i got older. And and again, it was it was a function of pre-ADA. I felt like it was my responsibility to identify what those accommodations really needed to be.
00:25:17
Speaker
Oh, I do want to say, though, with with the with the the General and Age-related Disabilities Engineering Program, I was able to work with other federal agencies. I worked with ah the National Institutes of Health. We did a lot of work in brain research and how that related to CT. And what but different parts of the brain, basically, CT is such a broad spectrum diagnosis that any part of the brain that's affected, you could as a function of the cause, whether it's ah hypoxia or whatever it happens to be, that was my case. When I was born, um the oxygen was cut off to the brain for a significant period of time, and it manifested itself in and spastic paraplegia. So I learned a lot, and on myself, in in brain research as it relates to changing the to CP.
00:26:12
Speaker
So as as a result of the work that I did at at NSF, I think you made a comment earlier about the American Institute of Medical and bio lot a Biological Engineering, AIMB. They actually elected me fellow in 2020 because of of the the the grants that I funded as a program director at the National Science Foundation to enhance and improve the lives of people with disabilities in technology development.
00:26:39
Speaker
That's absolutely amazing. And I think, you know, what I love hearing about your story too, as as you've grown into this, you've learned a lot about yourself with CP, as well as all of the people that you are impacting through your work. And very similarly to my case, and this is what I always think is interesting with CP too, I also didn't have oxygen. um I was stuck.
00:27:01
Speaker
And so what happened was, thank God I had oxygen when I was born and I was in the NICU. But you know the the biggest thing for so many people with disabilities is they they want to have that research backing how they can help them. Did you find for yourself it was almost like you were a detective and discovering more about your disability as you were also impacting the lives of others?
00:27:23
Speaker
Absolutely. That's absolutely the case. i Every day in in my job at the National Science Foundation, I learned something yeah something new. that That was the best part of the job. If you're a scientist or an engineer and you work at the National Science Foundation, it's like being a kid in a candy store. I learned so much about ah about well about the human body. I learned about gravity waves. I learned about you know space technology. i learned Anything that NSF would fund, they would have seminars and workshops. and yeah so it was I was a kid in a candy store. and and The only reason I left was to come down here to Florida and work at the Florida Institute of Technology and create a new biomedical engineering program.
00:28:08
Speaker
that really focused on technology development and part of that was to create technology development for ah for people with disabilities, and being a person with a disability, I was a visual representation of the disability community. Because being being ah ah the department head, you don't see department heads with disabilities. You don't see deans with disabilities. You don't see provosts with disabilities, unless they're age-related disabilities. But you don't see them from birth or from early onset.
Aging with CP and Health Advice
00:28:43
Speaker
it's generally age-related. So you'll see some old guy and some ah you know in some professional position and he may have bad knees or a bad back, but it's a function of of the lifestyle as opposed to a disability-inducing event.
00:28:58
Speaker
Yeah, and that's, you know, it's so interesting. I i love that then quote that you said earlier, you know, if we live long enough, everyone will have a disability. I mean, that's just, that's something that happens with age. But I think for us, aging with a disability from birth, it's a totally different feel. And your personal experience, what should people with CP keep in mind with their health as they age? um And do you have any advice to share with us from your personal experience getting older?
00:29:25
Speaker
I do, I do actually. you know I look back in my in my teens and 20s and 30s and you know I did not take care of my body. So treat your body with with respect. Take care of it. dont you know if If something needs to be, you need to pick up a heavy object, think about it. Think about, it can I use a tool to do it? Don't just bend over and do it.
00:29:48
Speaker
Now, maybe your back can handle it when you're 20, 25 or 30 years old, but you're going to pay for it when you're 60, 65 and 70 years old. So the things that that you do that that, you know, you might wake up tomorrow morning if you're 25 and a beetle's a little sore and you know, you've you've done some damage to your body and that's all cumulative over time. So when you, when you get to be older, you know, all the the normal aches and pains of aging,
00:30:15
Speaker
are enhanced because you've dealt with it as a function of your disability as well which you know it's it's kind of a ah a Coupling effect or you know they they're not you can't separate the two from each other Yeah, and I totally agree. I mean, there there are days it's like, I should be stretching, I should be moving my body, that I should be doing my exercises. And, you know, we just don't. But even approaching onto 30, you know, ah you were talking about your knee, I have hemiplegia. So my left side is my dominant side that, you know, carries all the weight. I pretty much can be a flamingo, I joke and stand on my left leg all day.
00:30:49
Speaker
I don't necessarily need my right leg for the balance, but I see that within my joints and my knee already on my left side, my ankle, because it's taking all that force to take over on my right side. And as well, i last year I was um speaking with a doctor who wanted to do on my right side, a hip reconstructive surgery. No. Yeah. Yes.
00:31:14
Speaker
Thank you. yes i and i i you know I got a second opinion actually from a hip replacement specialist who used to do those surgeries and he basically said, right out the hip you have and then we'll go from there. um But I'd even love if you'd like to share more about your experience with your knee replacement um because you know you had mentioned that there were a few surgeries and I think that something as we age joint replacements will be something on the list for many people with CP.
Knee Replacement Challenges
00:31:43
Speaker
Right, right. Well, you know, i've I've had a real challenge with mine because when I ah had my first surgery, it was back in January of 22 and it was supposed to be a one and done. They go in and they resurface the femoral condyles of the femur and put on a new tibial plateau in the tibia and done Now, because of the instability related to CP, the ah the surgeon said, well, let's look at this hinged joint. So basically, a hinged joint hinges the tivial plateau with the femoral condyle, and it restricts the the bending to 90 degrees. So you know you you could go to 90 degrees, you go from 0 to 90 degrees, but you couldn't go beyond 90 degrees with the hinged joint.
00:32:37
Speaker
and And that's okay. So he put it in and and everything was good. But he didn't put ah an underlining on the kneecap, on the patella. And the patella, because of the spasticity, my I have a high kneecap.
00:32:53
Speaker
And you know when when when you go through puberty with CP, the muscles are always tight, the bones are stretching out, and so the kneecap actually kind of rides up higher and higher than it normally would ah if if the quadriceps, the quadriccepts if the the leg muscles are relaxed.
00:33:11
Speaker
And that seems to be a challenge for especially with with paraplegia, but um I don't know if you've had this experience with your hemiplegia in your affected leg if your kneecap is a little higher than the other leg.
00:33:24
Speaker
Yeah, I've honestly now that I'm actually physically looking, I know that my right leg is shorter than my left. um So I wonder, you know, just looking at that all the way. I've never had that come up, but it's something so interesting. There's all these little intricacies.
Disability and Aging
00:33:42
Speaker
that lead up to the surgery that you had. And I'm sure you researched a specialist that you know had had some CP knowledge to support, but I think every body is also so different. Right. So that's interesting you know in in your case. So okay so after after that, that led to more surgeries in order for your knee to get to where you are today. Right.
00:34:10
Speaker
<unk> The whole goal of knee replacement, more mobility less pain. I mean, that's all I wanted. I wasn't asking for too much, but but it it is a challenge. And so if you take care of your knees and and your other load bearing joints, hips, knees, ankles, take care of those when you're young, you won't have to deal with, so you know, with these replacement challenges as you get older. Of course, when you're my age, who knows what the technology is going to be. They'll probably be able to beam the stuff in there and you won't even have any suture lights.
00:34:42
Speaker
Yeah, I know. who i I always joke that I'll just ride it out until I can actually have like a robotic leg just put in and it'll function better than and ever before. So yeah, we'll we'll definitely see. But I think it's something interesting too, because even as a younger person, when I was in college, I had a major surgery.
00:35:01
Speaker
that they projected you know two to three months for recovery. um And it actually took the entirety of winter break all the way through the semester. So our bodies just heal differently. And of course, you know as you age, it's known that healing takes longer. um So it's just all things to think about. But i I am definitely an advocate of do what you can for your body now. And even if I don't always take my own advice, I definitely will because you know It's something that everybody having a disability or not should be doing because you know we we have this one body and we have to do as much as we possibly can. to take when you're When you're young, you know you you expect your body to do what you want it to do when you want want to want to do it. yeah And you don't think about it not responding the way
00:35:48
Speaker
within your own, within your own paradigm. For example, I'm an engineer. So as an engineer, everything is a function of reference frame. So we know Cartesian coordinate system and all these other, other different reference frames, but theres there, there's, there's a, there's a normal for, for walking. There's a normal for vision. There's a normal for hearing, whatever that happens to be. And for a person with a disability, your own local normal,
00:36:17
Speaker
is not where the global normal is. And that's the definition of a disability. If your local normal is far enough away from the global normal, then you have a disability. You're not able to perform a particular function. like Again, vision, speech, hearing, walking, lifting, whatever that happens to be. But within your own local normal,
00:36:42
Speaker
you know what you can do and what you're, you can move around, you can do all the things that you know what your body will do. But aging moves your local normal outside of your own reference frame. And so you can't, I can't do the things that I could do in my twenties.
00:36:59
Speaker
even though in my 20s, my local normal was you know far removed from the global normal when with respect to walking. So it's all a function of these different paradigms of of what what we know we can do and what we know we used to be able to do and can't do now.
Mentoring Future Generations
00:37:18
Speaker
Wow. And then, you know, I think I know that there's so much as as we age that we have to think of as far as, you know, making sure that we can maintain as much of the mobility that we have or our body function. But I'd also love to know what's the best part about getting older with a disability. I'd love to end, you know, on on a high note of. Sure.
00:37:36
Speaker
You know, what it's it's again, it's for me personally, I mean, I'm dealing with my own issues with a knee right now, but I've got a ah ah lifetime of experience and knowledge and still being involved with the disability community. I go to, I still go to meetings. I was at a meeting back in March, the emerging research network meeting, and there was a day long workshop on for people with disabilities and being able to impart my experience and and talk with the, with the you know multiple generation I was going to say the next generation, but now they're like two or three generations down the line. It's it's really fun for me to talk with with young people now with disabilities and see you guys are so young and you're so enthusiastic and you're so energetic and you're so optimistic. And and just feeding off of that is is the best part of being older.
00:38:30
Speaker
feeding off the the the younger generation and and the optimism that's going to come in you know and the in the in the future. Yeah. Well, your generation you know really gave us the foundation to be where we are now. And I think you know also social media has advanced that even more because now we can all get our stories out there so much faster than what it was you know when you initially start networking. It used to be all inperson in person and research papers and It wasn't as connected as it is today. So I love that you say that, you know, because I look up to people in your generation that have laid the foundation because we wouldn't be here today without you. And I think, you know, it also goes back to you do say we are optimistic and I 100% agree. But I also think that we just have this like feeling as we age, especially with CP, that it's such a mystery for our generation. So even though there was groundwork laid,
00:39:26
Speaker
Why do you think that we feel that there's just there's not enough resources out there or why aren't there enough through all this work that we've all been doing? that that's That's actually a very good question. The short answer from my perspective is I don't know. you know i Working at the National Science Foundation, I was ah saw a lot of research that was being done. But the translation from the basic research to application to the benefits you and me in in our daily lives.
Advancing Research to Application
00:39:56
Speaker
I don't see that transition ah being um being done as rapidly as we would like. Now,
00:40:05
Speaker
and um I'm going to throw a ah plug in again for the National Science Foundation. They just created a new program three years ago called the Convergence Accelerator Program. and it's it's Its entire focus on the research funding is to go from bench to practice or from from concept to application you know in in the shortest amount of time possible with technology development. And I've been fortunate enough to be one of the grantees on on one of these first grants related to disability. TrackAge is all about technology for people with disabilities.
00:40:43
Speaker
And we have a team that we we went through phase one of the grant, which was just under a million dollars. And now we're in phase two, which is a $5 million dollars grant for three years to transition from our concept of technology development to actually implementation and provide tools for people with disabilities and what we're working on are navigation tools for people with disabilities to navigate through large venue activities like conferences or stadiums or airports or whatever it happens to be and adapting it to the needs of the people with disabilities. So NSF is taking a lead in trying to shorten the time between concept and implementation for for people with disabilities.
00:41:29
Speaker
And I think that's, you know, with programs like that, we do see acceleration in so much research that we've wanted to come out or so many products and different adaptations that we can use accessible tech. I mean, you know, the the possibilities are endless, but it helps with programs like this.
00:41:45
Speaker
to get things off the ground, whereas you know if it just went from research to all of that time in between to implementation. So that's really great to hear. So there's hope for for many things for us. And I also think you know we do have to be the people that continue to, I really feel ah you know for adults with CPM healthcare, care we're still building that foundation and conversations, even like what we're having today, it helps expand that reach of where people can find resources and what we can look forward to in the future for sure.
00:42:15
Speaker
So, every episode, this is a question that we're asking every guest, what's the number one thing you want to see change about healthcare for adults with CP? One of the challenges that that that I've experienced myself, and and and and probably it sounds like you have too, you know we have to be our own strongest advocate for our our our healthcare.
00:42:38
Speaker
Physicians are not trained in disability related issues. So for example, the orthopedic surgeon that I work with, excellent orthopedic surgeon. He's never done surgery on a person with CP, ever. And the the only surgeon I could find that's ever done that is out in San Diego. And it's only through CTF, the cerebral palsy foundation that that I know him.
00:43:03
Speaker
And you know, it's it's hard to go to San Diego and go through rehab and all the stuff out there. So I had to to work with this. Now this surgeon that I worked with, I mean, he knows that I'm a, you know, have background in biomedical engineering. So we worked out a plan.
00:43:19
Speaker
but it wasn't provided for me. I had to be an integral part in the development of that the plan for my own healthcare. I wish the healthcare industry took into account disabilities, not just CP, but you know the the broader spectrum, but including cerebral palsy in in these ah and they' were train in the training of these the physicians and in the broader healthcare industry.
00:43:48
Speaker
but i don't think we're included this Yeah, like I couldn't agree with you more. It really is like finding a needle in a haystack. um and And really, you do have to advocate for yourself and gain as much research that you can present. So yeah, but let's keep advocating for that change, definitely. um And thank you for sharing your personal experience with your knee replacement. and I'm glad that it's doing better and I hope that it continues to stay that way. Ted, thank you so much for taking the time to join us today on Cerebral Palsy Grows Up.
00:44:19
Speaker
This was such a great conversation, and I know you'll be answering a lot of questions that many people my age have um as we as we grow up, as we age. Thanks, Alex. I really, really enjoyed this conversation. Thank you.
00:44:31
Speaker
Thank you for listening to this episode of Suru Palzi Grows Up, the podcast. The show is produced by Ashley Harris Whaley, Katie Gastra, and Kyle Kechadorian, hosted by Alexa Orban, and its logo was designed by Brianna Rachey. We'd like to thank our listeners for being a valuable part of our community, and we'd like to thank Ted Conway for his time and expertise.
00:44:50
Speaker
Don't forget to subscribe and to rate Cerebral Palsy Grows Up podcast wherever you get your podcasts and please follow Cerebral Palsy Grows Up on Instagram and TikTok to stay up to date with the project and the podcast. Thanks again for listening and we hope to see you back for our next episode.