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Episode 6: Charlie Graffius
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Charlie is a masters student in the Motor Learning and Motor Control program at Teachers College, Columbia University. He received a B.S. in Exercise Science from Colby-Sawyer College. During his undergraduate experience, Charlie was a member of the Men’s Tennis team and the Exercise Science research team. This research consisted of comparing muscular activation patterns with various strength training modalities. Before joining the lab at TC, Charlie worked as a personal trainer for clients with neurological conditions in Brunswick, Maine. After being born with Cerebral Palsy himself, Charlie has used an evidence based approach to manage and improve his own symptoms. His current research interests include improving movement function and decreasing spasticity for patients with Cerebral Palsy. In his spare time, he enjoys reading, hiking, and playing sports.
Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Follow Charlie: @charlie.graffius
Charlie's podcast: The Movement Fluidity Podcast
Credits
Host: Alexa Orban
Producers: Katy Gaastra, Kyle Khachadurian
Executive Producers: Ashley Harris Whaley, Rachel Byrne
Graphics: Briana Raucci
Recommended
Transcript
Introduction to the Podcast & Charlie Grafis
00:00:10
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. Today, we're excited to have Charlie Grafis with us, who brings a wealth of knowledge and experience and movement and mobility.
Charlie's Sports Journey and Educational Pursuits
00:00:30
Speaker
Charlie's journey has taken him from playing college tennis and baseball to pursuing graduate studies in motor learning and motor control at Columbia University.
00:00:38
Speaker
Charlie also hosts his own podcast, Movement Fluidity, where he explores the importance of movement and mobility. I was so excited to connect with Charlie and talk a little bit about playing the game of tennis and just mobility in general. I'm also looking forward to sharing the discussion that we had between mental health and physical fitness.
Overcoming Challenges in Sports with CP
00:00:58
Speaker
So Charlie, I'd love for you to kick off the conversation with a brief self introduction.
00:01:03
Speaker
Yeah, thanks for having me, Alexa. And I just love the platform. CP grows up. It's super important to get this out there. A little background on me. I was born in Portland, Maine, grew up here, went to undergrad in New Hampshire. And now I'm doing a master's degree at Columbia in New York City. And I'm here because I was born with spastic diplasia cerebral palsy. And we'll get into this a lot, I'm sure, but I've always loved being around sports.
00:01:32
Speaker
and built a lot of my friend groups that way. um It was much more severe when I was a child and was doubted by a lot of doctors telling me I couldn't do things and as a stubborn child I wanted to prove them wrong and that included playing different sports, trying hard, and then as I got further into academics and stuff it turned into learning the science behind things about CP so I could improve my physical function and now just trying to ah figure out a career path to help other people with the things that I have learned. So that's the short version of it.
00:02:10
Speaker
That's great. Yeah. And sports, I mean, it have been a huge part of my story too, um, as I've grown up and from learning the sports that I can't play, like basically any context for is basketball, soccer, not, not at my alley. Um, but tennis, which I know you play as well, um, has been really great for me and you played tennis in college. I'd love to learn, you know, what that was like. And, um, if you talked openly about having CP with your teammates and coaches.
00:02:39
Speaker
Yeah, sure. And I did see a couple posts of you playing tennis. So that's awesome that you're getting out there to hit. And yeah, it's an amazing sport. I actually started I got recruited to play baseball in college. That was my my main sport growing up. And that was my whole identity. I was my whole friend group was playing baseball and played for the first two years in New Hampshire and then got cut from the team. And that was a huge, i just awful moment in my life. One of the worst times I can remember.
Support Systems & Mental Health in Sports
00:03:09
Speaker
And I ended up feeling sorry for myself for a while, and then a friend of mine said, you know, you've always played tennis on the side, why't why don't you just try out for the tennis team? And I said, sure, yeah, yeah i'll I'll give it a go. and it It ended up being better than I could ever imagine because when I was playing baseball, it was i very I was very closed off about having CP and the coaches were not supportive about this. they I think the main reason I probably got cut is they didn't want somebody with a visible limp on their team. you know It doesn't fit that stereotype of a typical looking baseball player. And then the shout out to my tennis coach, his name's Barry. He was the most amazing guy.
00:03:52
Speaker
and he brought me under his wing and he would ah he and bring me to play one-on-one with him for hours just basically personal sessions ah in the winter indoors. We went to these clay courts that were 30 minutes away from our school in New Hampshire and we would do that a few times a week plus all the normal practices just so he could get me up to speed because he knew I was a hard worker and and just wanted to get better and then had ah a lot of great friends as well, friends from all over the world on that team, from Germany and China and other places. ah This was really when I first started being open about CP, telling them I had limitations, telling them I'll still work as hard as I can, but sometimes I do get fatigued and sometimes maybe yeah I can't explain why I'm not playing as well as I i would like. and
00:04:44
Speaker
ah ah that That just was a big mental shift knowing that people in a sports setting would accept me for for having CP. Yeah, and and for me, i I have adaptation, so my CP affected side, it's what I write with. So technically, that should be the side I serve with, but I actually serve with my physically dominant side, which is my left side. So I you have four hands two two backhands, and you know there there are times like, you know I'm going for a ball. My racket will be in my left. I throw it into my right and I can get the ball on the other side. And people are like, wow, that's so amazing. And you know, but i it's to me, it's like, well, that's just how my body ah has adapted to create kind of this like piecemeal of all these shots that I can put together that do the best for me. Yeah, it's the most efficient way, but it is super cool. I'd love to see see how you do that. That's funny.
00:05:40
Speaker
Yeah, we'll have to play. But I think you know when you were talking about your body not like working as well as you'd like to, or you show up, like I don't know if you feel this way. Sometimes I can play tennis back to back two days. One day I'm doing absolutely amazing. The next day I'm like, why can't I get power on these shots? I'm fumbling. i'm you know i I just feel like my feet are underneath me. Do do you ever have a similar experience?
00:06:05
Speaker
Oh yeah 100% and that's why it is nice not being on a structured team now because I can play one day or hike one day or do whatever and then take a day off if I need. but When it was a schedule of playing two or three hours a day, at least, it got to be a lot. And through working quite a bit, by my senior year, I was a starter in singles and doubles, and I i was super pumped about that. But then, especially the singles started to really wear on my body.
00:06:34
Speaker
and ah We were down in Florida for a trip for tennis and I just hit a wall from playing both singles and doubles and realized and I started to have some kind of neurological type symptoms that were just becoming pretty problematic and had to go to ah some doctors to see what was going on and it was just really severe overtraining combined with having CP. So my senior year I ended up just playing doubles and ah sitting out on the singles because I realized I unfortunately couldn't push it as much as I wanted to and had to listen to ah what the body with CP has to say even though that can be a hard thing at times.
00:07:18
Speaker
Definitely. And I think sometimes like we just have to give ourselves that grace to say, okay, we're still showing up and doing as much as we can, while also making sure that we're doing the the most
Inspiration and Openness about CP
00:07:29
Speaker
for our body. And I think that's physically and mentally, right? Because it does play a ah mental game. um I think that's a big part of it.
00:07:37
Speaker
But something I'd love to talk about you know with your journey as an athlete with CP is a lot of disabled people who are athletes can sometimes be perceived as less athletic or less capable or even inspirational to non-disabled people. How do you think you're playing collegiate sports challenge people's perceptions about disability?
00:07:56
Speaker
oh Yeah, I think I've always done it just for me because I like the almost the game of it of improving myself and just You know, I I wasn't I'm not trying to do it to win a gold medal at the Paralympics or anything I'm just doing it because this is the lifestyle I like to live and Really just yeah growing up as a kid and couldn't figure out when I'm running to go get this ball why do I look differently than that kid and all this stuff and then just started experimenting with different lifting styles and workouts and and recovery techniques and yeah like I said it's just it's fun for me to improve
00:08:38
Speaker
function. I know that's not for everybody dedicating a lot of their life to that, but for me, it's fun. so i Then as I finished my college tennis and baseball career, I had friends and family say, oh, you should get your story out there because this is inspirational to others and ah you can help young people that maybe have CP or something else in in their journey. And then I realized, you know even though i I'm not doing this to get out there, get my name out there, I think I could be inspirational to some people. And that's when I started my podcast. I know we'll get into that at some point and started being more open about it.
00:09:24
Speaker
and still just doing what I've always done. But um yeah, around the end of my college tennis career was when I had that shift that, you know, there there are kids that could use this because when I was a kid, there wasn't really anybody I knew that had CP to look up to. So now there's quite a bit more and there's a lot of people with more of a following than I have. But even just helping one kid is ah is amazing. So if I can do that and feel like I'm doing something special.
00:09:51
Speaker
Yeah, I feel the same way, you know, when i when I share my story, that's who, when we say inspiration, for me, when I say inspirational, that's who I'd like to impact is the people that move like me, that are going through life like me, that can look at somebody and say, Oh, that's how I move.
00:10:11
Speaker
Oh, that's how I go through the world. um Because up until I started sharing my story, I hadn't meant really anybody that I felt like had CP similar to me. So I think that that's so powerful, even if it impacts one person, that's really my goal. And and that's why I'm here too. So I love that you shared that um because, you know, getting your story out there, it's not always easy, but I think it's something that's really worth it. um And have have you found that as you've started to share more and connect with people?
00:10:43
Speaker
Oh, yeah, definitely. Yeah, I was just going to say, I i think I understated just how how much I pushed aside having CP. And it before opening up about this, it was something that we wouldn't even talk about in my family. And it was if if it got brought up, if I had to go to a doctor's appointment as a kid.
00:11:02
Speaker
I was angry for days and if I tripped and fell in the playground or if somebody made fun of me, I was so angry and closed off and it took me until probably 18 or 19 years old to have my first open conversation about it with with my mom at first. and And now, yeah, just slowly building on it, opening up to then other family members, other friends,
00:11:28
Speaker
And then to anybody where now it's not pushing it aside, it's being open with even strangers. So yeah, it was it's thou that's really the hardest thing in my whole journey of having CP, harder than anything physically that I've done is ah the mental side, the emotional side of opening up about it for me. And I know a lot of people are are really good about that from the get-go. There's people that grow up and they're open and props to them because that that is amazing to be able to do at a young age. But I think it's something that everybody, everybody yeah their life will get better the more open you are about whatever it is, CP or or anything.
Community and Mental Health
00:12:06
Speaker
Yeah, and I think it comes down to having communities where you're able to share that, too. like you know Even what we're doing here today, and CP grows up, and just so many you know amazing places for us to connect. Before that, I feel like you know i felt very lonely. um So now you know I find that there's like so many more resources and and places that we can connect. But you know it it does a big thing that you were talking about, you know not really talking about your CP. and becoming on this journey of of who you are now, um it it plays a lot with mental health, right? Like it's a big piece ah of our journey is not only the physical disability, but the the mental health impacts. So I'd love to you know hear your story a little bit more on how sports and movement um impacted your mental health too.
00:12:54
Speaker
It's been everything. It's been a night and day shift since I since i opened up. it's I'd say hands down the most important thing for my mental health over the years is opening up about it. and ah Yeah, for for me, it was just so tied in with my personality. It was sad I was an angry kid, stubborn. And I really think a lot of it was tied into the CP. And it kind of took some unpacking of emotions to figure that out. But I'm glad I have and on and I'm on the other side of it. um But yeah, it' it's ah also like I said, it's such a complicated
00:13:36
Speaker
thing having CP. it's It's every day is different and so to be able to compete in sports and now i'm I'm getting big into hiking and just all different physical challenges. Physical challenges are so tied in with the mental challenges for me and not only just for the grit and work hard part of it but also because It is such a complicated challenge to improve function with
Personal Agency and Health Approaches
00:14:03
Speaker
CP. and For example, when I was a kid, I could not even hike a small little hill. I would always fall. One thing I always say is I i broke four all four limbs in one calendar year because I was just trying to do things that I couldn't do and you know
00:14:22
Speaker
My mom and and dad probably yeah didn't like that because I kept having to go to the emergency room. but um it just The one part of the mental side for me is trying new things, not being afraid. And I think I've always done a pretty good job of that. But then working hard and working in a smart way to be able to say hike this huge mountain that I've been doing or play a college sport, that's been the most rewarding feeling I can ever find. and It's the mental and the physical combined, figure it out, work hard.
00:14:58
Speaker
and do something that that doctors told me it was never possible. I mean, i the doctors told me I would never play competitive sports. And I took that as ah something that I wanted to prove them wrong and worked out of anger for a while. And now it's not out of anger, but it's still, I think something about that is still in me that I just want to see what's possible and push myself to the limit.
00:15:25
Speaker
ah In terms of mental health, yeah, it it's it's everything. and One other thing about this is I think it's important to develop agency for one's health. um Because sure, we have great medical professionals and a lot of cases of things like CP are much more severe than others. um But our intuition on what our body needs, I think can be integrated and can be just as powerful as anything that any medical professional can do.
00:15:53
Speaker
and The physical, mental, emotional just really can't be separated. But when you are mindful about it and when you do have the tools, ah some things that I've learned over the years from people and from experimenting on myself, it just all align. Those three pillars align and you can just improve your life. um So I know the physical side is something that a lot of people focus on in CP and that's what the whole medical industry is about. And then there's also you know the the mental health side of things, but they're they're also intertwined. And I think that's important to note.
00:16:25
Speaker
Yeah, it's it's like your body like you how you said pillars or like your body's ecosystem and and giving it what it what it can handle and giving yourself grace you know where it can. I think that's so important. But you know one one thing from myself too is also kind of that fear of trying something new because with a lot of you know physical things, I know that I'm going to try something and I'm probably going to be 10 times worse than any new beginner.
00:16:52
Speaker
And typically I am. it's It's what held me back from going back to ballet for over a decade because I was just so nervous to show up into a classroom full of adults after not doing it and not really knowing where my body was going to be at. So what's one thing you would tell people with CPU who are considering trying a new sport or who would want to become more active?
00:17:15
Speaker
Yeah, well, first of all, props to you for trying all those things I've seen on your Instagram throughout the years, all the different sports you've done. So that's that's ah that's great. And glad you you got back into you got back in the ballet. have Have you been doing that at all?
00:17:27
Speaker
um I haven't been keeping up with it as much as I should, but yeah, I do go. Nice, nice. Okay, so yeah, that the main thing I would say about this is just just do it without thinking too much about it, whatever it is, because anybody, but especially if you have CP, if you, say, plan to play a sport in a month, you're going to be overthinking it and coming up with so many reasons why you shouldn't do it. Oh, my legs are tight. um i don't I worried about what people think of me, all these things. And for me at least, ah those the the more I think about something, the more those will come up and then the less of a chance of actually doing the sport or activity.
00:18:11
Speaker
So spur of the moment type things have been really big for me. Just, you know, somebody invites me to go rock climbing. That was a one recently. Or do something completely different than anything I've ever done. Just trying to not overthink it because those reasons will come up.
00:18:30
Speaker
But oftentimes if I just go for it, don't think about it, I'll get something out of it. And then it might be an activity that I want to do for the rest of my life. And um I think it's just getting over that hurdle. So the less time you think about it, the better. And then also when you are actually doing an activity, be open about having CP from the beginning, especially to the coaches or organizers of the activity.
00:18:59
Speaker
Instead of waiting to answer questions about whatever it is because about CP in this case Because there can be some shame that can be you know You're just it's in the back of your head if if you don't if you're not open about it you might catch people looking at you differently and um You're wondering, oh, do they notice? um Oh, am I going to be able to do this? Are they going to think of me this way if I can't do this? All these things. So if you're open about it from the beginning and you state the limitations that you have, but then you also say, despite these limitations, I'm going to give it all I can, all I have. And um some days might be worse than others, but I'm going to give it 100 percent.
00:19:43
Speaker
And we're going to have fun doing whatever we're doing. And I know you'll be an inspiration to people if you do that. So yeah, I think the biggest thing is just being open about it and remembering that you will be an inspiration. So that can get you through some of the hard times.
Adaptability in Training & Research Innovations
00:19:59
Speaker
Yeah. And I think it kind of ties into the work that you do as a personal trainer with a disability as well. And and do you do train disabled and non-disabled clients? And how do you show up in that space as a trainer?
00:20:12
Speaker
Yeah, i I did for a while before grad school, so I'm not seeing any clients at the moment. But ah yeah, I love love being a personal trainer and with people with neurologic conditions, especially were the most intriguing to me for the complex puzzle of it, but also just the gratitude they show up with every day. so Yes, I worked with some people with parkinson's some senior balance classes with that And then a few people with cerebral palsy as well and and a couple other other related issues and then a lot of general public um But yeah, just seeing the person in general seeing the person For what it is on a given day is important because everybody fluctuates, but especially With cp it fluctuates and if you're not adaptable to that then
00:21:01
Speaker
You can't just go in with a generalized program on on anything. It needs to be adaptable if you really want want the the best results in the long run and it's not going to be a ah linear progression. So just being adaptable, being as adaptable as possible with those populations and also be in there for them if they just need to rant or i have a friend at the moment.
00:21:25
Speaker
Yeah. Yeah. Well, I think you I like the way they said adaptable, because I say that like we are professional adapters. Like this is, you know, what our bodies have taught us like right from the beginning. um So I love that you said, you know, show up and if that's if that's what your goal was for that day to support them. I think that's amazing.
00:21:42
Speaker
um And so we talked to you talked a little bit about grad school. And so you're currently a grad student um and researcher at the Center of Cerebral Palsy Research at Columbia University. um Do you want to share a little bit more about that journey of what you're studying and researching now?
00:21:57
Speaker
Yeah, sure, sure. So I studied exercise science and undergrad, and then I started to learn about things like strength training and conditioning and how those affect CP, but I realized that there was a lot more about the brain and the nervous system that I wanted to understand. So I found this program at Columbia called Motor Learning and Motor Control, which is under the Behavioral Sciences Department.
00:22:23
Speaker
So, it's a very specialized program and ah motor learning, motor control, that basically is about how the brain and nervous system control and learn movements. um So, it really is everything we do.
00:22:38
Speaker
and The CP brain is a little bit different because of the brain injury early, early on. And like you said, we're adapters and um new pathways are formed and we create ways that we can navigate through the world. And that that's super interesting to me. And then the research we're doing, I'm under Dr. Andy Gordon in the Center for CP Research.
00:23:04
Speaker
and We're doing he focuses a lot on that hand function. So we've we've done some we call them camps with that where we have kids with CP come in and Right now what we've done is something called habit, which is hand armed by manual intensive training. So Yeah, I know a lot there, but um basically what he did beforehand was something called CIMT, which is where you have your non-affected hand in a slang and then you would use your affected hand to do the tasks, whatever it is, because you couldn't use your other hand. And what he found is that this new approach where actually using both hands is more effective because it translates more to the real world, essentially.
00:23:48
Speaker
But either one, they're they're in intensive time settings. So instead of somebody with CP going to a physical therapist once or twice a week for an extended period of time, these are condensed into 90 hours over a few weeks. So the the idea there that Dr. Gordon has found is that these new maps in the brain can form more readily when in an intensive session. so what this lab is hoping to do is make this this practice more utilized in settings like physical therapy because you can get more changes in the brain when it's done intensively and also when it's done ah together with the hands the the and bimanual therapy and the other thing is we're doing some brain stimulation this summer so and same habit thing the hand arm bimanual intensive therapy but then we are putting electrodes on
00:24:45
Speaker
hotspots in the brain that control the affected hand of these individuals and stimulating it for the first 20 minutes and then doing activities whatever it is they want to learn. A lot of these kids it's a lot of games so ah keeping them engaged with whatever games we can and that's a two-hour protocol and the idea of this is that it'll reduce the time needed for this intensive therapy because 90 hours is a lot. That's just more than a lot of people can can do. But if you could get the same benefits from therapy out of 10 hours with this brain stimulation, it would be a lot more accessible. So yeah those are the couple main projects we're doing right now. That's amazing. And is that something that you'd want to do when you graduate? Or is there a certain project that you would like to take on um when you graduate?
00:25:38
Speaker
Yeah, well for my thesis actually, ah that's coming up. I'm gonna be doing more of a strength training based protocols and things that I've found effective and on a few people with CP. So I think taking together strength training and motor learning is where I wanna go with my career because it seems like there' is there's a big gap between those two fields and I think they can compliment each other pretty well.
00:26:05
Speaker
But yeah, in in the future, I ah hope to stay on and in research and continue education somewhere and hopefully maybe have have a lab someday where I can keep asking a lot of these cool questions.
00:26:20
Speaker
Definitely. I mean, that's something that, you know, growing up, I was a part of a few different studies and, you know, I did a gait analysis and, you know, that PT and concurrence, but I could see how these intensives, and I've seen a lot of them actually, the UK does a lot of them, especially um with younger kids with CP, where they put them through the intensives, you know, the parents pack up and and go for a few weeks to come back.
Intensive Therapies vs. Traditional Methods
00:26:44
Speaker
so It's something that I think they're seeing is a bigger impact than six months of once a week. Um, because, you know, speaking from personal experience, it would be like, okay, go home and do these exercises. Okay. I'll come back next week. And I probably did them maybe once, you know, um, and, and so, if that, yeah. Yeah. Yeah. Hey, I'm i'm giving myself, yeah but yeah, i have right out that's for me personally is that, yeah
00:27:10
Speaker
and No, i I know. And and so you you know to be there, it's also that accountability, but it'll just make such an impact. So I think that's really cool how that's something that's you know on on your thought process for the future too. So on top of you know all the things that you've been up to, you also have your own podcast called Movement Fluidity, um where you interview health professionals and disabled people. Can you share a memorable conversation or tell us a little bit more about your podcast?
00:27:38
Speaker
Yeah, I'll start with sharing a little bit more. So yeah, like I said, started this just after my undergrad playing tennis and started out by just sharing my story on the first episode and then got into a little bit more of the science behind things. This was when the Huberman podcast came out around then. I don't know if you're familiar with him. but I kind of wanted to have it be a little bit similar on a much ah lower scale than him, but just about ah movement function and motor control and strength type things ah for the disabled community. So then did yeah ah quite a few solo episodes there and then started interviewing people and realized, oh, wow, I can interview somebody who I would never have talked to from anywhere in the world.
00:28:29
Speaker
because I have this platform now. So that was pretty cool. And it just kept growing from there. And then ah recently the last six months or so i started interviewing a lot more people with CP because I just wanted to get ah involved in the community more and do things like this. So um they've all been special in their own ways. And it's just been a great platform. So it's something um I'm excited to keep doing.
00:28:56
Speaker
And as for a memorable conversation, there's been a lot of them, but I i got to say Bonner Patek.
Memorable Interviews and Podcast Goals
00:29:04
Speaker
I don't know if you're familiar with him. Malinola. Yeah, so he was... I read his book. He has cerebral palsy, spastic dipolegia, just like me. And I read his book around the time where I was ah starting to be open about CP. and His book was something that really sparked that. So he is the first person with CP to hike Mount Kilimanjaro, the ah largest freestanding mountain in the world. And then he also did a Kona Ironman in Hawaii.
00:29:40
Speaker
So he has a book about this. he There's a documentary that I've probably watched five or ten times at least now. And so I always looked up to him. He was the first person that I really saw in the CP world that had what I had exactly and was doing a bunch of awesome things. And now he has a ah foundation called the OM Foundation where he has centers all around the world helping kids with all sorts of disabilities. So in terms of the physical challenges that he overcame and then also what he's doing now helping the world. I mean, those are like my two biggest things that I want to keep accomplishing in my life. So just having a role model like that and being able to sit down and talk to him and just hear his perspective on things was amazing. that That's got to be ah easily the most memorable and I can't wait to meet him in person someday.
00:30:36
Speaker
Yeah, it's like ah it's like a full circle moment where you realize like, wow, something that impacted me. And then I also had the power to sit and on a conversation with this person that just made such an impact in my life. Yeah. and there's There's something so powerful about that because, you know, I think that especially with, you know, social media, like there are these people that we look up to and that we really feel like we know through their life on on social media or through their book. And so when you have that moment where you can connect with them, um I think that's something that's really amazing. And i I'd also like to say, and I'm not sure if you can like double click on this, but sometimes we have to reach out to those people because you never know like if they will just like message and have that moment um because it it really has, you know, changed my perspective that we are all people, like no matter what we're up to, like we are all people and and that connection is just so important. So it's great that you're able to connect with so many people through your podcast as well.
00:31:34
Speaker
um Well, I would love to just talk about a little bit, what's something you want adults with CPE to know more about movement, health in general? um Because I just feel like you have such an interesting perspective on just what we can do with our bodies. And I know, you know, we're to just two individuals with our personal experiences, but I think that there's just so much advice um that could be given. So I'd love to hear your thoughts.
00:32:02
Speaker
Yeah, sure. Yeah. Thank you, by the way. And yeah, I think the number one thing is that yeah in in the medical world in general, just having preventative care versus being reactive to the symptoms is is huge.
00:32:19
Speaker
And this is being done pretty well in early intervention with CP. The cases are going down, the severity is going down. So that's amazing. But that's way out of my realm of expertise. So um I'm more interested in ah the you know retraining motor motor patterns and with adults and and everything.
00:32:40
Speaker
But, but yet it's not being, there's not much preventative care being done with adults because it's thought of that. Oh, this, you know, this brain injury static, it's going to stay the same or get worse throughout your entire life. And then the medical industry is reactive to things like contractures, joint pain, uh, immobility, whatever it is. Uh, but the being
00:33:10
Speaker
Preventative or proactive is not profitable like these things are so it's difficult to integrate this in a in in a medical field and Most of the care is done just mainly in these clinical settings but in my experience there are things like lifestyle factors that are just as important and it seems like the CP population is so separated from the just general population where ah Our care is, is well, made it first of all, it's ah it's pretty much only up to 18 years old, which is a big issue in itself.
Preventative Care & Access to Specialized Services
00:33:45
Speaker
um But also it's all CP related. It's fix the symptoms. you know You have tight calves, stretch them, get cast on them, have surgery on them.
00:33:54
Speaker
But there are these lifestyle things like a holistic approach with nutrition, sleep, physical activity, ah temperature with ice baths and saunas. I'm huge on those. um All these things, meditation, that impact the body and mind and those bringing those three pillars together instead of just focusing on the one physical pillar and the one isolated approach of, the in my case, the lower legs.
00:34:22
Speaker
So I think a holistic approach is needed for general health and in any population um But with CP there are specific needs and I think there could as science progresses there could be things like supplements or nutritional advice and specific physical training protocols that address the individual needs of of people with CP um so I just hope science keeps going down that way and ah Maybe I can be be a part of it, but ah the the lifestyle things I've found are not being talked about at all.
00:35:01
Speaker
and there are ah It's so multi-factorial, and I know it not everybody wants to be b eating a certain way or focusing on their sleep or you know doing all these things. But a lot of people are are interested in these things. And if if it can be a pain-free way to improve function instead of going in and getting a surgery or something, I think a lot of people would would benefit from that. But the issue is, like I said, it's not a profitable thing. it's yeah
00:35:32
Speaker
It's something that needs to be talked about, but it's not going to create you a business model or or anything like that. I was very lucky to have a parent that advocated for me who was in healthcare. So it changed my perspective on and that one person's treatment plan might not be the whole treatment plan for me. um And so I think looking at it in a whole perspective where there can be so much more care um is something I totally advocate for, for people like keep asking questions and and keep seeing what's out there for your health. I think it's really important.
00:36:09
Speaker
yeah and Yeah, people like you and I, were we are lucky to be able to have access to all these things because it it is a big problem. A lot of people in the world don't even have access to the general care that I just talked about, that i the reactive type things, which still are super important. so ah that That's one thing that Bonner Patek is doing is getting access to these general things for everybody in the world. um And that's, you know, taking a step back from these things I was just talking about. But I think that's just as important, probably more important because ah just giving access to everybody is, yeah, and that's everything.
00:36:46
Speaker
Yeah. and i mean Even in location being um in New York City for you, like you're close to so many professionals who are you know experts in CP constantly researching CP and that's not the case for many, many places in the country. um so I think you know the the work that you're doing in and New York, it's something that will stand so much further. It's laying that foundation for so much more care for adults with CP across the United States and the world too.
00:37:17
Speaker
Yeah, thanks. That's the goal. um so yeah Well, I know I'm sure you have a very long answer to this question, but every episode we're asking every guest, what's the number one thing you want to see changed about healthcare for adults with CP? Yeah, the number one thing, I mean, I think I i kind of just answered or gave gave a good amount of my answer on that last question. So yeah, number one is and
00:37:48
Speaker
ah There's just two directions I want to go with this, but I might have to make this into two things. But the first one is that being ah proactive or preventative versus reactive and you in medicine. um But the second one is something I touched on earlier is just having agency over your own body and being your own doctor, being your own medical professional, whatever it is. and Because we we do have an intuition about what our body needs that even somebody with 10 years of training, they don't they don't know what it feels like to have CP, um which is another reason why I think it's important for people with CP to be in in the medical field of treating people with CP because you know what it's like and you know what it feels like and how it can and differ. um So I think combining these typical medical approaches with our own intuition and being able to have
00:38:46
Speaker
ah guidance on given tools on how you can use your intuition to, for example, um just lay on the ground and have somebody walk you through strategies where you can experiment with different types of movements and figure out what your body may need in the moment.
00:39:05
Speaker
because it's not going to be a typical stretching protocol, three sets of one minute on your calves every day. It's going to be different every day and um they' you might be laying on the ground and somebody's walking you through this and then you move a muscle in a certain way and you realize, oh, I've just loosened up something I haven't or um I'm strengthening a muscle that I've never felt work before.
00:39:30
Speaker
So there's a lot we can do on our own. We don't need to think about, oh, this medical professional needs to do everything for me and tell me everything that they know because they're the they're the professional. You have a lot more that that you can do using your intuition, all of us. That's what I think.
00:39:48
Speaker
Awesome.
Closing Remarks and Future Hopes
00:39:49
Speaker
Yeah. Well, I think that's, we had so much, you know, that we talked about as far as like movement and health. And I really thank you today for taking the time to to be on and and talk about this because, you know, i I think when you look at short videos of people with CP moving and you know You don't get that full picture of the health care they've gone through to get their body to to be where it is. And also maybe that was a good day or maybe we shared a bad day, but it's a piece of so big of a puzzle um that leads up to how we move through the world every day. So thank you for your input today, Charlie. And we're excited to be able to share this out to the world.
00:40:30
Speaker
Yeah, thank you so much. This was great. thank you for listening to this episode ofru palsa grows up the podcast this show is produced by ashley harris whaley katie gastro and kyle ketchoorrian hosted by alex orban and its logo was designed by brianna rachi we'd like to thank our listeners for being a valuable part of our community and charlie graiss for his time and expertise Don't forget to subscribe and write Cerebral Palsy Grows Up to podcasts from wherever you get your podcasts, and please follow Cerebral Palsy Grows Up on Instagram and TikTok to connect with the project and stay up to date. Thanks again for listening, and we hope you'll be back for the next episode.