Rachel (00:00:08):
Okay. Well, hello everybody and welcome to Cerebral Palsy Connect. We're really excited at the Cerebral Palsy Foundation to be offering this new education series, which is both online and in person. So please look out for what local opportunities are going to be coming to a place near you, but thrilled today to be really offering our first piece, which is during Cerebral Palsy Awareness Month. And obviously it was Cerebral Palsy Awareness Day yesterday and have some phenomenal speakers with us. Before we get started though, I do want to sort of introduce both myself and my co-host, Jennifer Lyman, and some of you may already know us. Obviously we are part of the team at CPF, but just to give you a little bit more background, I'm a physical therapist and also have training in exercise science, which is a really important part for our topic today.
(00:01:00):
So obviously I'm really interested in how the body responds to exercise, what's happening physiologically, but also how that translates into real life and participation and particularly adaptive sports. So I'm really excited to have both of these experts with us today. And I'll let Jen introduce herself as well, because obviously many of you know her as our CPE resource manager, but she has a wealth of knowledge and expertise that she's going to be bringing to the table during these discussions.
Jen (00:01:27):
Thanks, Rachel. And I'm thrilled to be here. I'm thrilled that we're getting this going and started, and especially given that it's CP Awareness Month and yesterday with CP Awareness Day. And yeah, I guess my background, like Rachel said, I've been working for CPF both as the resources coordinator and for CP Resource and also the director for clinical recruitment. Both positions I really love because I've gotten to meet so many people. In fact, a few people that I know are participating in this call today through both the clinical recruitment and some of the CP resources. My background, I trained as a recreation therapist and was a practicing recreation therapist in a variety of different settings. I've worked in inpatient rehab. I've worked in psychiatric inpatient. I've also worked in wilderness programs. I've run camps and I've also done previously adaptive skiing and then more recently I got back into some adaptive skiing that we'll talk about later.
(00:02:36):
And then I've also been a case manager for people with significant disabilities. And now I'm also the mom of a 21-year-old with very complex cerebral palsy. So that's my background. I'm going to pass it on to Gavin. Oh, Rachel, I think you're muted. There you go. You're still muted, Rachel.
(00:03:05):
We can't hear you. I don't know. How about, let me have Gavin speak for a second and see. Can we hear you?
Gavin (00:03:16):
I hope so.
Jen (00:03:18):
I can hear you. Gavin, would you mind introducing yourself while we try to figure out what is going on with Rachel here? Rachel, maybe I can remove you real quick and then put you back in.
Rachel (00:03:29):
No, guys, I think that works. Have I got you back? I think something happened with my microphone. But yeah, as I said, thanks, Jan. And at the foundation, we're super excited. We know many of you have joined us already, so please put in the chat where you're joining us from, because we want this to be a discussion. We don't just want this to be obviously a lecture where you're hearing from the four of us. As much as I cannot wait to hear from obviously Gavin and Tom and everything that they're going to talk to us about today. But yeah, Gavin, can you please introduce yourself and to our listeners?
Gavin (00:04:02):
Yes. So hi everyone. My name is Gavin Colquitt. I started my career, I guess, related to Adapted Sport as a physical education teacher in the public schools in an area that Tom and I both share adaptive physical education. So lots of different settings for adaptive physical education that I'm sure we'll get to. But I had the very unique role of during the day, I was teaching in that capacity, but then I was also a strength and conditioning coach. So that made me very interested in the role of strength training among my students. And I had several students with cerebral palsy who was very interested in doing that type of exercise. So way 20, 30 years ago, we weren't really sure about resistance training and kids with CP and it's come a long way. So after that, I became a professor, founded a Center for Rehabilitation and Independent Living in Georgia.
(00:05:17):
And we have multiple programs. We had summer camps that were recreation based. We had afterschool programs that were fitness and motor skill based. And a few years ago, I moved to the state of North Carolina where I'm the executive director of the Appalachian Institute for Health and Wellness. We are expanding our programs for people with disabilities here at the Institute. Most recently, we developed a clinic that has a CP program for children ages zero to five with extensive family supports that hopefully also get families to start thinking about sport participation for their children. So really happy to be here and be joined by my good friend, Tom.
Rachel (00:06:09):
Yeah. Amazing. As everyone can see who's listening, we've got some pretty exceptional speakers. And obviously, Gavin, the expertise you're bringing to this conversation across such a broad range of both areas, but then also settings, I think is really important. So anybody in the chat, if you've got questions, we're going to try and answer them as we go. As I said, we want this to really feel like a community connection. We've got some people obviously that have joined us from Connecticut, from South Carolina, Oklahoma, from New York, from California. So we're all around the country, and obviously there's many different experiences. But Tom, can you introduce yourself?
Tom (00:06:45):
Absolutely. Tom Moran, first and foremost, a individual with cerebral palsy. I was actually born with spastic diplegia. And my first introduction to this topic was being that child who got told, "You can't participate in sports. Your walker, your forearm crutches are considered weapons." And so they refused to let me be on the field, yet that is where all my peers were. And in my small community, it was either sports, drugs, or dead. Well, the third option didn't seem like a good idea and there was enough challenges with CP. We didn't need to add drugs to the equation, but yet I'm being told sports is not in the cards for me. And I was grateful to have teachers and coaches that believed in my abilities beyond the playing field and actually got me into coaching at a very young age. I took my first coaching class when I was 12 years old and began coaching little league and youth soccer.
(00:07:55):
But many of you can imagine the looks that I got when I decided to follow Gavin's path and I wanted to become a physical education teacher and coach. In fact, I got told by many, "You mean you want to go into athletic training?" And then my first day of college, I actually got told special ed is up the hill.
Jen (00:08:18):
Oh, gosh.
Tom (00:08:19):
Right? "Oh no, therapeutic rec, no offense Jen is across the hall. Go over there." And so that was my introduction. And so that frustration just continued to boil. And I would often say, "Me, give CP to somebody else. I want to be on the field with my friends."
(00:08:40):
And so I was blessed to continue that journey as a physical education teacher and coach. My end goal, if I was honest, was to be a college soccer coach. And I was like, "Okay, if I can't play, at least I can coach." But then CP bit me in the tail one more time when I was told I couldn't take the national coaching course because you had to be able to play to finish out the course. And because I couldn't do a step over, I wasn't allowed to do the practical portion and so therefore couldn't pass the course. And at that same time, so here I am a junior in college and my mentor tricked me. I'm just going to be honest with the audience. He told me I was just signing up for a leadership class. That's all I knew. Well, unbeknownst to me, the culminating product of that leadership course, which you had to run a program for people with disabilities.
(00:09:39):
And I thought, son of a gun, you're going to force me to work with people with disabilities. I guess I'll run a soccer camp because at least I have soccer balls, I have T-shirts, I've got lots of resources. Well, there was a young man who was 12 years old that his CP presented very similar to mine, and we're going to call him Vincent. And Vincent was so scared that he came up to the table and he was shaking and he said, "I can't do this. I want to go home." And so I start knocking the ball around with Vincent and two hours later he comes up and says, "Coach Tom, coach Tom, I scored six goals today. Can I come back tomorrow? Can I join youth soccer?" Vincent changed my career trajectory because Vincent reminded me God didn't burden me when he gave me CP.
(00:10:28):
He gave me a gift. And even though up to that point I was trying to suppress that gift, that was my opportunity. And so that summer, I got ahold of a non-for-profit lawyer and I started a non-for-profit called Just for Kicks. And I started traveling around the country doing camps and clinics for children with and without disabilities because I realized that through soccer, like Vincent, many could discover, understand, or appreciate their abilities. And so it was never about kicking the ball, but by kicking the ball, Vincent and others get to discover abilities they never thought they had. And so Vincent sent me on this career trajectory where I began as a public school physical education teacher. And then like Gavin, I went on to higher ed because I wanted to train the next generation to have an ability first lens, to stop looking at just what people can't do, but rather maximize the crud of what everybody can do and discover their abilities through sport.
Jen (00:11:38):
And
Tom (00:11:38):
So I'll pause there, but that's the joy that brings me to you this afternoon and evening. Welcome everybody.
Jen (00:11:44):
Tom, thank you. I think we briefly lost Rachel here. There she is. She's back. I'm curious, where did you grow up? Are you allowed to ask that? You
Speaker 4 (00:11:55):
Are allowed to ask that. And I actually saw somebody put in the chat upstate New York. So I'm curious how close they are to where I grew up. But I was about an hour south of Lake Ontario and an hour and a 15 minutes east of Lake Erie. And so very, very small town. I mean, I graduate with 59 people. That gives folks a sense of just how small, but upstate New York.
Rachel (00:12:18):
Okay.
Tom (00:12:18):
Whether there's more snow and cows than people.
Rachel (00:12:22):
And I loved your intro, right? Because obviously I think there's a lot of ... We've covered sort of like, well, why are we all here? Why are we all so passionate about this and what's the next steps? But you also touched on something really important, I feel, Tom, and it's the piece a lot of people think adaptive fitness only means participation, right? But you've touched on so many other things. It's not just about participation. Yes, it can actually be about goals of kicking a ball, but it's also about creating these skillsets to be able to do lifelong sports, lifelong different components. And we're not saying everyone's going to be on a Paralympian track. Mind you, there are plenty of people that are, and that is amazing as well on what those opportunities bring. But yeah, I think that's really important. I'd love all three of you to talk about that.
(00:13:07):
We focus so much on participation sometimes. And as I said, that is so important and adaptive sports and fitness allows for those things to happen, but it is far more than that. It's not just about participation. It is really about finding truly what is adaptive fitness and sports. So everybody can benefit both from a physiological perspective and for fitness, but also to participate, I suppose, in a full way.
Jen (00:13:30):
Yeah. Yeah. I'll start with sort of a little story about us. When my son was about 12, he was burnt from endless and aimless physical therapy. Sorry, Rachel.
Rachel (00:13:46):
I'm used to it. I'm
Jen (00:13:47):
Used to it. Yeah. And I remember I would be dragging him over there and I was. I truly believe endless and aimless. And his physiatrist, who was a dear friend of mine at the time said, Jen, stop the madness. And I was like, thank you. I just needed somebody to give me permission to do something different. And I was like, I know he needs a community he needs to strengthen. And we found this great personal trainer who, she was really cute too. So he immediately had a crush on her, but she started working out with him and got him engaged in exercise and weight training. And she was just this exuberant human being and became a good friend to him. And she worked with him for a little while. And then he ended up joining a gym where other people with regular people, but it was really designed for people with disabilities.
(00:14:50):
And when he joined this gym, it wasn't about participation, it was about community. And so for years, it was this community that he would go to three, four days a week where he had his friends where they were all working out together, whatever their abilities and capabilities were. And I mean, my gosh, he was the strongest he had ever been, and also looked forward to it. And so it was kind of that combination of, this was not any different than me. I've got my gym that I love more than anything with my community of ladies, and we all have our little workouts. And that's what it became for Bower. And I think that was that transformation from some of the things that I had seen him do previously to this experience of this group and community that really had become a home for him.
Rachel (00:15:50):
Yeah, Jen, I loved that whole piece of thinking about, all right, what's that transition from therapy to then actually these lifelong fitness and adaptive pieces? And really love that you said it went from participation to community and also then those health and fitness goals, right? You can have very tangible goals around strength and all those different things that we need. Gavin, would love to ask you the question around thinking about the different types of models of adaptive sports. Some people think therapy is that. I completely disagree as a therapist, like adaptive sports, recreational components are different, but can you expand a little bit more on the different types of models of adaptive sports and fitness programs? Because I know obviously you've had such a broad experience in those.
Gavin (00:16:33):
Yeah. And there's a couple different ways to really think about it. Typically, I think if you are an individual with CP or if you have a child with CP, you may know a little bit about certain adapted sport programs. Maybe you've seen the Paralympics on television and it can be really overwhelming because it's not as mainstream or accessible, even though you may know a little bit about it. So we typically look at a couple different kind of models and I say this being a professor and Tom will agree, we can dissect these approaches several different ways, but I think in a very practical sense, we really look at what is the setting? Is it school-based? Hopefully the school has some type of opportunity for adapted sport or intramural or whatever that may be. It could also be community-based. Local recreation departments, a lot of times will have different programs that are available.
(00:18:01):
In many cases, it could, in some states, they have really robust interscholastic opportunities.
(00:18:08):
I know when I was in Georgia, the Georgia High School Association expanded opportunities and for folks with physical disabilities to compete as a high school athlete. And then a lot of different college programs will support, even with scholarships, different types of adapted sport opportunities. And then it really depends on, I think, maybe what the social ... Obviously the age of the child, but a lot of social factors that are the individual, a lot of the social factors that are in place. What is accessible to you? Are you in school? Are you an adult in the community? And then we can also look at different delivery options. So virtual participation has become very a lot bigger and we've seen growth in that. We've seen communities among individuals where they can participate virtually. And we've seen a lot of your regional adapted sport organizations like GLASA in the Chicagoland area.
(00:19:27):
They have pretty extensive virtual options where you can compete, maybe you may compete on your own, but there's definitely a connecting component to that. We also look at what we can call segregated, or it could be disability specific types of participation. And we see these programs in communities like CP Soccer, for example. And then obviously the best is where we see full inclusion models, which is unified participation.
(00:20:07):
But usually that's how we kind of first think about it from a very broad perspective is where is it going to occur and who's it going to occur with?
Rachel (00:20:18):
And I think that's really important. And Tom and Jen both jump in here as well. Obviously, there are models in the community where you might have a really dedicated parent who's going to be coaching their local soccer team and wants to learn different components to include obviously people, but there are also very specialized and skilled people in the adaptive fitness and recreational areas, both of you being one of them or both of them. And so Tom, just expanding a little bit more even on your trajectory and some of those things that families and even adults can look out for. Obviously you want to be able to connect with the coach and if that's the opportunity that's available to you, but you can also ask some hard questions and say, "Do you have qualifications in this area? Are you trained in this? " And if you're not, maybe there are opportunities for local coaches or local community teams to go get that training so they can come in and actually be more equipped around adaptive fitness.
Tom (00:21:15):
Yeah. Rachel, thanks for firing up that softball because I was going to share, and I'll put this in the chat, that folks can check out our Inclusive Wellness Coalition. It's www.inclusivewellness.com or sorry. Org. And like I said, I'll put it in the chat. But one of the things that we did through that coalition was we brought together wellness providers, service providers, advocacy organizations, parents, individuals, and said, "Let's all come together as a community to create the spectrum of opportunities that Gavin is talking about. " And so then the next step was we challenged each wellness organization to say, "What's one activity that you already do well?" And then they would identify it. And so let's use the example if it's the organization, Girls on the Run. Well, by the name, you naturally know what they're good at. But what they candidly said was, "But please don't send those that can't run to us because we're not sure what to do.
(00:22:23):
We know how to create a running program for anybody who's ambulatory, but what does running look like if somebody uses a manual chair or a power chair? Or what if right now, because of a myriad of reasons, they can't run by the traditional definition?" And so then what we said is, "Okay, you do running, but then let's bring in some other folks that can give you that disability knowledge, can give you that adaptation or behavioral intervention to be able to navigate some of that. " And now we have a co-instructor model. So that was step one is, where is the expertise and go find it. And then step two, your question is, are you trying to make your existing running program inclusive or are you saying, "No, we think we're going to be better off creating an adapted option and a inclusive option." Or some actually got smart and said, "We want three levels.
(00:23:18):
We want the adapted option. We want a reverse inclusion model where yes, we may have 60% that still are folks with a variety of disabilities, and then we've got 40% that are their siblings or non-disabled peers, and then we've got our full inclusion model." But it was like, you figure out the implementation that is going to work best for you, but all we're going to do is ask your one organization to do their one small piece of the pie. But then if we ask every organization to do that, now across the community, even in a rural community, you're going to have a spectrum of options. And I think that's really great. On that website ... Sorry, Rachel. I was just going to say on that website, if folks want to check it out, we also have four training modules-
Jen (00:24:08):
I was
Tom (00:24:08):
Going to ask that. ... community said, "Let's really put together modules based off the knowledge gaps that we often hear." And so if you check out the website, the four topics that were selected based off several surveys, we're addressing challenging behaviors, planning inclusive programming, modifying for inclusiveness. So how do I take the "traditional activity" and modify it to maximize ability and then lastly, accessibility considerations. And those were all controllable accessibility considerations, not let's put in a ramp because I might not have the ability to control that, but what facets of accessibility can I control? Sorry.
Rachel (00:24:55):
No, and I think that no, no, I love this. And I think it's really important for those listening, like if you're going to start an adaptive fitness journey and those different things to understand the different models because they are going to be different and then that'll help with then almost like the expectations both of what can be achieved, but also the gaps.
Rachel (00:25:11):
I think we know that there is still going to be so many gaps in your communities around these different pieces, but there are tools like inclusivewellness.org where people can go and look at those things. And even Jen, like thinking about as a recreational therapist, right? Obviously there might be some people going, "I don't even know what a recreational therapist is or does." And obviously recreational therapists sometimes work in very different settings. It could be more of an acute setting.
Jen (00:25:39):
I think my career path fits my personality, which is ADHD. I couldn't pick just one thing that I enjoyed, so I had to choose them all in one umbrella. And so rec therapists do work in a variety of settings from inpatient and acute settings to, you think of the activities directors in retirement communities or assisted living communities to things like outdoor wilderness programs and camps and things that are more specific to people with different types of disabilities, whether it's the different thing of just the different environments I've worked in, people with mental health disabilities and things like that to people with physical disabilities. In the more acute setting, I've worked a lot with people who have come out of brain surgery from brain cancer or gunshots, that type of inpatient rehab setting. And that's really translating a lot of what the PTs and the OTs are doing into practical life situations that are focused on what you love to do and what you love to do with your friends and family.
(00:26:59):
And really looking at not just adaptive sports or fitness and that kind of stuff, but we talk about leisure activities and things like that. So how are you going to spend your time? You're not always going to be working out. There's so many, so like I said, ADHD is kind of the perfect path for me because that's what I have and I'm always all over the place. But yeah- I
Rachel (00:27:28):
Think it's really important for everyone to understand, right? As I said, different levels of people's involvement or even their place. Like Tom, you spoke it really well to say, "All right, what are people good at?" So you're going to have coaches in the mix, you're going to have recreational therapists in the mix, you're going to have teachers in the mix, you might have a physical therapist in the mix as well, maybe you've got an exercise physiologist. So there's all these people who can be part of this journey and everyone kind of plays a different role, which is pretty amazing, but also ideally you want them to all to come together. So I know there's a lot of people listening going, "Okay, well, where do I go? Do I go to a personal trainer? Do I find an adaptive sports coach? Do I find those different things?" And I don't think there's one correct answer actually for all of this.
(00:28:11):
I think the piece is, A, knowing who you're seeing and what their skillset is and B, then going, "Okay, will that achieve the goals that I'm trying to do? " Is it that I'm trying to actually look at a strength and fitness goal and is a personal trainer actually going to be the best for that? Is it something like, actually, I want to be able to really participate in CP Soccer? Well, then you want them to go to a program that has that sort of potentially grassroots if it's for a child, for it's in adults, obviously, then you're sort of looking at different things. And I think that's really important as we look at this as a whole because it does encompass a lot of different things. And I think at times, physical therapists, we kind of sometimes take the lion share. And as I said, actually, we're not necessarily skilled in recreation.
(00:28:58):
We're not necessarily skilled in those different pieces. And that's why it's really important to have these other team members who are part of obviously all of this work. And as I said, more understanding what each person does and how they can then contribute either to your goals as a family or your children, and then obviously as adults too. So I suppose it does ask some of the questions then as we're looking at different examples and for complex CP, let's probably divide it into two different areas like complex and severe CP and then other things around looking at strength or increasing cardio respiratory health, like strength programs, cardio examples and sort of the intensity. Obviously we have a little bit of guidelines when it comes to exercise and health and fitness for those with cerebral palsy. We obviously have broader population-based guidelines. Gavin, can you sort of dive into that a little bit for us if those are the goals, right?
(00:29:54):
If cardiovascular fitness and health and strength are the goals, what are some things people should be considering?
Gavin (00:30:01):
Yeah. And one of the things that I also wanted to highlight, just because I think so many individuals are not aware, if you do have a fitness goal, so many personal trainers now are getting trained specifically to work with people with disabilities. I taught a course in inclusive fitness and the American College of Sports Medicine has an inclusive fitness certification.
(00:30:33):
The other big national body is a National Strength and Conditioning Association. And in their latest manual for personal training, I authored a chapter on guidelines for people with CP. So I definitely think that the knowledge gap is closing. As we become more inclusive, our training programs at the university level are moving right along. So I think that that's very exciting. So if that is a goal that you have and you want to work with a personal trainer or you want to learn more, definitely understand that those opportunities have increased. And along those lines- And you
Rachel (00:31:24):
Can ask them, right? If your personal training, you can say, "Do you have this qualification? Have you done this certification?" And it might be a yes, which is amazing because obviously then they'll have that foundational piece to really hopefully be able to understand the components that they need to do. But if they don't, encourage them to go do it. And I think these are the things that the community can have those expectations and not have, "Okay, well, this is all I've got the option for. " You really can ask those questions and ask people for their qualifications and what they've done. Just the same as if you were going to go get surgery anywhere, you would be asking that surgeon, "Do you have this skillset?" And I think in adaptive fitness and health, there is a really strong skillset and the expectation that we have.
(00:32:08):
So absolutely make sure you ask people.
Jen (00:32:11):
And I think there's ways to search for that as well. You can find trainers now that have those certifications in your area. I believe NASM and ACSM, I'm going to get the acronyms wrong, but I think both of them have that search capability on their sites.
Rachel (00:32:27):
And we'll put those links obviously in the chat, but we'll also put them in the show notes. Someone asked, actually, will this recording of this webinar be available after? Yes, it will. And we'll be also sending out a follow-up email, as I said, with all these different links and obviously resources that you have access to.
Speaker 4 (00:32:46):
The other thing that I just want to add to our conversation when we think about designing or finding the right trainer, it's also using technology to be able to actually provide us data to say, "How hard am I working when I'm doing this exercise?" Because the reality is if you've met one person with CP, you've met one person with CP. So even though we can come up with recommendations and general qualifications, if we have data and we quickly see that that makes someone's heart rate spike and we know whether they've gone from their aerobic zone to their anaerobic zone, that's good data for any well-trained personal trainer, whether they have experience in CP or not versus having that data, we might say, "Well, the person's not perspiring, must be they're not working hard enough." And yet we look at their heart rate and it's through the roof and we look at their respiration and they're clear.
(00:33:45):
So I think having that personalized data will not only inform the client or the user, but really does help our personal trainer or the exercise specialist who's working with that individual. I love
Gavin (00:34:01):
That.
Jen (00:34:02):
Awesome point. And I know you love that, Rachel, because you're a physical therapist. I
Rachel (00:34:05):
Love that. I'm such a technology piece and obviously able to be able to measure something that actually is really quantifiable and to say, "Okay, did this achieve what we wanted to do? " And Gavin, I know you're trying to jump in here, so absolutely please do. But yeah, Tom, maybe we can come back and actually dive a little bit deeper into that because obviously there's a lot of technology, whether it be wearables that all of us do now as part of day-to-day life and that we have access to how we can actually embed that into our goals and fitness goals and things like that. So I definitely want to come back to that piece. But yeah, Gavin, please jump in.
Gavin (00:34:41):
No, I was actually going to make ... I did want to get to the point about individuals with complex CP, and I was going to make the exact same point that Tom was going to make is that a lot of times we see these physical activity guidelines and we think that there are recommendations for aerobic exercise and its effect on cardiovascular health, but what we don't understand or we don't often think about is a lot of times folks with complex CP, even certain ... There are a lot of tasks that can produce a benefit that may be cardiovascular, and it's based on the level of difficulty for the individual. We know that just postural changes can elevate the heart rate for some folks with complex CP. So that's incredibly important to consider. And you're right that I don't think we should, in addition to asking for qualifications, I think a lot of trainers or just a lot of individuals that may work at a fitness facility may have a desire to learn more, to really make that experience personable and accessible for anyone who would use their facility or their program.
(00:36:10):
But it's very important for us to consider alternative modes for what physical activity would look like, especially for our folks with complex CP.
Rachel (00:36:24):
Yeah. Yeah. Can we dive into that a little bit more? And thinking around, let's talk about cardiovascular fitness and increasing the heart rate and things like that, how important is that? Obviously when we're talking about different exercise, we're usually doing it for health benefits. So thinking about the health benefit part of it, how important is it to consistently, if you are working out to make sure that your heart rate is in that area and if you can't get it there and measuring it in those different pieces, because obviously, yes, there is a participation side, but if we're really looking for these health benefits on some of these things, do we know? Do we know what an ideal heart rate is? Is it the same, say for example, for a wheelchair user or somebody who would be mobile in other ways?
Gavin (00:37:15):
Yeah. And I mean, that's somewhat of a loaded question because it depends on if individuals have any type of accompanying health conditions where that interplay of elevated heart rate could pose a risk factor, but those thresholds are the same. What we know now is that it's overall energy expenditure, and that's the most important factor. And in many ways, it is just the total amount of activity. So if you think about your Apple Watch or your smartwatch, it really is that those move activities-
Rachel (00:38:10):
Closing the rings.
Gavin (00:38:11):
Yeah, exactly. Now for individuals with CP, by far, the most important mode of exercise is going to actually be focused on the muscle. We know that individuals with CP typically can have very poor muscle quality, and that it's actually the quality of the muscle that can ... Even though they may look thin, their muscle quality may be so poor where they're at risk for diabetes or other ... Their cardiometabolic risk factors are through the roof. So it really is so critical for individuals with CP to think about the quality of their muscle and strengthening that muscle. And it can lead to so many other things. And Rachel, I don't want to hide, but I do want to ... There was a good question in the chat about-
Gavin (00:39:24):
Agree.
Rachel (00:39:25):
I agree. I was just about to propose that to all of you because I think it's a perfect segue when we look at adaptive exercise and what are some of the options on trying to think about that. And some of these are new novel-based options, obviously, that we are still doing research around. Others are things that we really have good evidence for already. As you said, we have good evidence that activity time and the amount that you do does matter. We have good evidence that it does need to be of some level of quality that can obviously impact your heart rate. Now, of course, this is not medical advice. And if anyone who's about to start a fitness program, we absolutely recommend you obviously speak to your doctor and your physician because there can be other compounding factors. But we've got a question from Felicia, so thank you so much around what exercises do you recommend?
(00:40:13):
She is a wheelchair user and she loves adaptive exercise, which is amazing. And then we'll talk a little bit about opinion on using the vibration place. Let's do that separately because I do think there are obviously then things that are coming down the pathway when it comes to research about what things look like. But if we're just talking about some exercises you recommend to sort of meet those, I suppose, activity goals, what are some really good ones? And there's obviously, it would be great to do the whole can't talk, whole suite of different options, right? There is the gym, there is then going to recreational and participation exercises. There is then doing what could be a home-based exercise. But I don't know, who wants to take that question on to begin with?
Jen (00:41:02):
Oh gosh, I feel like that's a lot. I know that for us, I'll start with what's been great adaptive exercises for us, what's really resonated with my son. And it has been pretty heavy weight, heavyweighted resistance exercises with ... I'm trying to think of good terms, but things like lat pull downs from his wheelchair. Rows have been wonderful for very specific exercises, but they get such a broad base of muscles for that. We can also, he has a standing chair. So in the standing chair, he can do a lot. He can do bicep curls and things like that. So a lot of upper body exercises that have either used a combination of TheraBands or weighted plates that we can use.
(00:42:07):
He doesn't need them anymore, but he started out using active hands to help him hold on to do these exercises. And then as his grip strength has increased, he can hold on by himself. But I guess the other part about is if you don't have any of those things, even pulling yourself up to stand and working on pulling that way, of course, sit to stands and leg presses have been ... And we will do leg presses, I call it the home-based way from the bed, having him just lie down on the bed, we will add some leg weights, we'll add different things like that, and then just press against me, push mom away, which is always a good tactic. So those are some kind of whole body exercises that we have found and Pilates too. We also use a lot of Pilates-based activities, which was great because you take gravity out of the mix and when you're looking at people with complex cerebral palsy, gravity seems to be their worst enemy, always bending into gravity.
(00:43:14):
So a lot of the things that you can do on some of these, I'm thinking of the total gym, for example, where you're kind of at an angle and you're weight bearing through your feet so that you can use that to do some pushing and things like that. So those are some of the exercises that we have found to be great for strengthening. I'll pass- No, and I
Rachel (00:43:37):
Love that. And it took me back to some of my therapy days where it's like, oh my gosh, the amount of times that you might get a child to do a sit to stand. But the difference is that you are doing these for a real strength-based goal compared to doing it. And I think this is the bit to change some of these narratives as to the why. I think therapists sometimes are doing it potentially for the right reason, but it becomes, rather than a strength goal, kind of a boring goal, honestly, for most. But we do know for those with complex CP, particularly if you're to do an assisted transfer, how important that is to maintain through adulthood, and these things help with all of that. Now, I do want to dive deeper into the question around vibration, because actually the foundation was involved in that study.
(00:44:26):
Gavin, you've been involved in that study. And obviously vibration as a exercise tool or as a piece has been around for quite a long time.This isn't something that is so novel, but there was a study that was done out of the University of Georgia by Chris Modeleski and his team, and obviously Gavin, you were a part of that. Can you just talk about that a little bit more and what we saw? And then after that, I think let's talk about some other studies that we know that have shown both benefit and then some things that we still don't know enough information about.
Gavin (00:44:56):
Yeah. So one of the things that was really surprising in this trial, and I was looking through for the specifics citation, but is that in regards to physical activity as an outcome, vibration did not have a significant improvement. So I think that we're looking through some of the other data in regards to muscle quality, but it was pretty astounding. And I think that there's a lot of reasons that we could consider that effect, and this is, I think, a very
Rachel (00:45:44):
Important- Can you also define what you mean by physical outcome, just for those listening to be like, okay, what was actually measured? And for those also listening, what did the protocol look like? What was the expectation of what people did with the vibration plate?
Gavin (00:46:00):
Yeah. So kids would stand and I see Camille, I think Camille said that her daughter participated in the study and it was extremely rigorous. So what was very different about this study, it was the first double-blind randomized control trial. So that's incredibly important to point out that it was very tightly controlled. And we measured physical activity by using hip and ankle accelerometers. So we had a really good objective measure of physical activity and the intervention involved children standing on a vibration platform for 10 minutes a day, six days a week. And again, what was really interesting was that the children did not know if they were on a platform that was receiving a vibration or if they were on a part of the control group. So I think that that was really, really important to point out.
Rachel (00:47:12):
So can you kind of explain that a little? So for obviously vibration is a feel- You can feel it.
Jen (00:47:20):
Rachel (00:47:21):
Not feel it. So how did you control for that just out of interest?That seems like something quite tricky to do
Gavin (00:47:28):
A level
Rachel (00:47:29):
Of vibration that- Well,
Gavin (00:47:31):
It was a buzzing. So this particular type of vibration that we looked at was based on some of our pilot work and it was a high frequency, low volume vibration. So there's a way to, with a buzzing sound or there's a way to mimic the actual dosing of vibration to where you really can't tell or not whether or not you are in either group of the study.
Rachel (00:48:11):
And that's because it's that really low vibration piece. I think some people when they're imagining vibration, they're imagining you're really sort of standing there and you can really visually see if somebody's on that vibration page. So that's really interesting obviously for that study and then sort of looking at them, well, how do you measure that? And I think this is interesting going back to that initial piece of when you're doing these different exercises or fitness pieces, if some of these physical outcomes are your goals, how are you measuring those improvements or those changes and how important that is? And obviously studies like that help us define how to do those measures, but there is then also other ways you can measure things obviously yourselves. The other piece, I suppose, then looking at a study like that saying, "Okay, well, it didn't have the physical outcomes that maybe you're expecting or hypothesized." Is there then follow-up to that?
(00:49:06):
What is the next steps in that sort of research and pieces? Is it to think about doing a different design piece rather than doing low vibration? Is it higher vibration or is it really thinking, okay, that may not be something that would be appropriate?
Jen (00:49:22):
Or even frequency, like 10 minutes a day, five days a week, is that enough?
Gavin (00:49:28):
Yeah. So I think one of the things that we really want to do is look at all of our data because we collected a lot. The abstract that we published was just physical activity as an outcome. So we're looking through everything and we want to be really careful so we can paint a complete picture of the study. So that's really important. And then I think once we look at some of those, like the big picture, then we can determine next steps. I will say that the pilot work that we did was very extensive and we really chose a very particular type of vibration, a particular model of plate that we had a pretty good solid evidence base.
Gavin (00:50:29):
Make some hypotheses for that study. And I think that this type of research is really, really needed because supplements and exercise devices are not regulated by the FDA. So if you just look at vibration, it's all over the place and we really don't know if it's ... There's a lot that we don't know. So it is incredibly important that we ... When we look at those kind of niche forms of exercise, it's really important that we lean to what we do know. There are some things that we know are incredibly effective. There's another clinical trial that has been going on for a few years by Noelle Moreau at Louisiana State University Health Science Center. And her modality involves interval walking with really intense exercise at a very high speed for the lower body. And I've actually was involved in a similar study, it led a similar study with Dr. Moreau where we looked at the upper extremity and we, going back to Felicia's point, who's a wheelchair user, you could look at my study and we actually used a ski ergometer and it is ... Most of our participants were in GMFCS3 and four, and it was incredible the increases in muscular power that we saw.
(00:52:32):
So there are kind of some tried and true modalities that we know are really effective, but it can be challenging parsing through all that information.
Tom (00:52:44):
One of the things that I'll share as a fellow researcher is, and Gavin's getting to this point, that sometimes we just realize as researchers, we looked at the wrong outcome, that we were really hoping to improve this outcome, right? And we never even thought to explore our impact on outcome C, D or E, which says a couple of things. One, to Camille's point, it says to any of our participants, make sure you share all benefits that you've experienced, even if it ends up being qualitative because then we might actually have mixed methods data, because we might realize that, yeah, while we thought we were improving this, we actually were improving something else. And then a lot of times as researchers, when we start combing through that data, we're able to either find something else or realize there was nothing wrong with the intervention. We just need to repeat it again looking and measuring this completely different outcome.
Rachel (00:53:43):
It's a
Tom (00:53:44):
Really
Rachel (00:53:44):
Good- It's so important, right? And I think it's also then as a community, what outcomes are important to you? Because you can go in and measure all sorts of things, but if it's not important to you as well, then what's the point now? Obviously there are some health outcomes and physiological outcomes that people are looking for, but there's a lot of others as well. Question then that also sort of came up, and maybe this will be our last question talking about exercise physiology, the ins and outs of those things. And then I would love to go into some of more of the recreational lifestyle opportunities that we all love to talk about, but Paul has asked the question, are there any ways to measure quality of muscle? And even things that you brought up before, Gavin, we spoke about obviously what does a fat deposit look like in muscle.
(00:54:30):
We know sometimes that muscle is of poor quality. Are there ways to measure that? And then even the study you just spoke about, Noel's study for power, does power and power training help change that in the muscle? But question for you around how do we measure the quality of muscle anyway? Because I'm sure none of us want to do a muscle biopsy to actually try to do it. And I know there are some simple ways looking at body composition and other things, but what are ways to measure the quality of muscle?
Gavin (00:55:01):
Well, the gold standard is an MRI. So sometimes that's usually the best way to look at it. For our study, we actually used a combination of MRI and validated using ultrasound,
(00:55:20):
And that is also, I believe, how Dr. Moreau looked at muscle properties. But when we think about specifically muscle quality, it can be a little bit harder. And I'm going to define muscle quality in terms of its composition, like you mentioned. There's different qualities of bone and muscle and types. So we really look at how much muscle is there compared to fat. Sometimes in kids with CP who again are very thin or adults with CP, and this is actually something that we see as people with CP age if they are not active, that maybe the circumference of a limb stays the same, but the fatty deposits just kind of explode within the muscle. And it's really that intramuscular fat that are associated with the greatest risk factors for some of those cardiometabolic health conditions. What is accessible for folks is a lot of doctor's offices have a DEXA scan,
(00:56:39):
So DEXA scans have different capabilities, but that can tell you a little bit about your body composition and your quality of bone. And then just in case, because Paul had the indication, he mentioned tone, what we know or what we hypothesize is that we think we can improve muscle tone through resistance training, or at least it's not going to get any worse. There's a lot of work that I know myself and I hypothesize that if you're doing resistance training at a very high speed, it can actually improve the muscle tone. And very similar to what Sherry put in the chat is we really don't want to do static stretching. We want to do dynamic type movements that do have a velocity component, that do have a range of motion component, and it's great if they have a resistive component as well. So we really want to look at kind of the whole picture when it comes to that.
Rachel (00:58:01):
No, I think that's so important. And I think it's these pieces, right? And obviously you spoke about MRI, you spoke about text. So some of those things seem a little bit inaccessible to some, but there's also then some other measures that are a little bit more, I suppose, they're not as quantitative, they're not as clear, but things that we can use. And grip strength is one of them. And I'm sure many of us have heard, okay, one of the signs of aging is to make sure grip strength is strong. And Jen, you just spoke about that actually grip strength was one of the outcomes for Bower in what he was doing for his exercise. But are there any things like that, like grip strength, obviously leg press strength and power, and then we did speak about different functional performances. Tom, do you want to talk about those or like what's something that ... So people do, like there are some more of these measurable things that maybe are a little bit more accessible that are also looking at muscle quality.
(00:58:56):
They're not just doing it in the sense of it might be a secondary outcome, I suppose, to improved muscle quality.
Tom (00:59:03):
Right. I mean, to me, it links back to the functional movement, right? And are we looking to isolate a particular muscle to strengthen it, or are we actually training the body to recruit multiple muscle groups to perform the functional movement at a high quality? And those are two very different things. And as a therapist, as an exercise specialist, you're going to get arguments on both sides. But ultimately, if you want the person to be functional and to be able to perform their activities of daily living, then you've got to say, all right, how can I help you recruit the muscles that you need to recruit, strengthen and be able to activate them when you want to activate them and maximize the crud of what you're going to get out of that performance, right? So is it going to look pretty Maybe not. But is it functional?
(01:00:04):
Hopefully the answer to that is yes.
Jen (01:00:06):
Love that. I love that too. I think from physical therapists sometimes get in their way because they want things to look pretty and everything to work exactly right. And I like to think that some of these things, some of the more playful activities I think about that we've gotten involved in, they're not going to be perfect. It's not going to be the perfect movement. Oh, sorry. My fire alarm's going off in my house right now.
Rachel (01:00:34):
All right. Well, I think-
Jen (01:00:36):
I'll mute myself. Sorry.
Rachel (01:00:38):
Hopefully you don't need to actually leave your house if there is a fire alarm. I feel like Jen ignoring that may not be what we're meant to do. Fire alarm aren't you meant to be like duck and roll. But I think the piece here, I think it does go into a nice segue because I'm conscious of time and I'm conscious of everyone who's been listening is to really then think about some of the fun activities, like let's talk about them. I'm fortunate enough that I have participated and assisted in a lot of extreme sports. So he's like a little brother to me, is obsessed with extreme sports. So whether it be surfing, whether it be skiing down a double black diamond, whether it be now jiu-jitsu, these sports that really are more about X game type pieces. And having access to those sometimes can seem quite daunting because sometimes you're like, "Oh, okay, we don't really belong in those spaces." But the one thing that I can say is that those spaces sometimes are so accessible, so much fun, and give you all these different benefits that we've spoken about.
(01:01:41):
But Tom, let's talk about some of the stuff. You obviously have a foundation around CP Soccer. That was a really big part of where your journey kind of started and developed. What are some of your favorite activities? If you were going to talk about some of these recreational and lifestyle activities.
Tom (01:01:59):
Yeah. So it's funny that what I tell people, and again, this speaks to my upstate New York routes, but my favorite outdoor activity is snowshoeing. And again, everybody pictures the tennis rackets strapped on the bottom of your shoes. It's a little more higher class than that, but that the snowshoes themselves basically create a platform where you don't sink completely in the snow. And then I just use ski pools as my balance pieces and just love to trudge through the snow. So while people are doing cross country skiing, I'm that person snowshoeing through the same pathways. And then as a person whose wife loves to hike and now our children are enjoying her on hikes, prior to, I had to say, "Okay, we're going to take this trail and when I reach a point that I can't get any further, I guess I'm just going to hang out here and watch for bears and you guys go on the rest of the way." But now there are so many different things you can tap into.
(01:03:08):
There are fun modalities that'll now help you get up the mountain. There's stuff with tracks, stuff with wheels. And so I really would encourage people to just simply say, "What is it that your friend, your wife, your neighbor are doing?" And guess what? There's probably an option out there to explore it. And whether you have the means to go buy it commercially or you find somebody who just loves to create custom equipment or create a trial opportunity, give them that challenge to say, "This is what I want to do. How can you use a modality to maximize my abilities to allow me to do it?
Rachel (01:03:53):
" I love that. I love giving the challenge to some community groups because if you don't ask, sometimes you'll never get. And so it's like going, "Okay, some people are waiting to be asked or they just haven't thought about it before for some reasons." And in a way, obviously snowshoeing wasn't made to be adapted, but it's actually quite an amazing tool for adaption. It's like with obviously adaptive surfing, we use life jackets. Those life jackets obviously have been around forever. And now where life jackets have got to has come out of big wavesurfing. And so they're not these sort of big bulky jackets anymore. They're actually lifesaving devices for big wave surfing. There's things now as far as even wetsuits that have obviously all different padding and flotation devices in them, again, came from big wave surfing kind of era, but totally usable, available off the shelf to then use for other types of adaptive surfing, swimming or just enjoyment, whether it be in the ocean or the pool, which is amazing and not disability specific per se.
(01:04:58):
Jen, I know you just recently found your love of skiing and adaptive skiing and went to the mountains recently. Can you talk a little bit about those things? And I know you are a activity junkie really, I would say, and love being outdoors and doing sports.
Jen (01:05:17):
Yeah. We've been doing adaptive skiing for a long time since my son was very young. And one of my personal goals was to learn how to guide or lead the sitski, which is what he does. And he can't do it himself. He can't use the ... I'm trying to think of the arm ... The arm skis.
(01:05:45):
The arm skis. So he sits in the sit ski and then somebody steers. And before I had him, I taught adaptive skiing, but I did not do the sit ski. I taught people with visual impairments and other disabilities. And so that was something that I had wanted to learn how to do. And then it was over the years, had been thinking about it. And then finally a few weeks ago when we went on our ski vacation, back to the resort where I worked over 20 years ago as an instructor with their adaptive program, they were able to give me the opportunity to learn and take the clinic to teach the sit ski again. And I have to say it was incredibly challenging. It was terrifying at first, but to be able to finish the week out, leading him all day as his guide was a wonderful experience for me because I feel like now if it's available to us and we can do it on our own, which is really cool.
(01:06:55):
And it's an interesting ... I think it's a really neat sport because I think you don't necessarily think that it's challenging because he's riding in the sitski. But when you think about it, each time we're taking a turn, each time I'm calling out a turn to him, he's having to write himself. He's having to get himself back up into the center, which is core strength. And it's going to ... So it's a very challenging sport for him as well, and he loves it. The smile on his face when we're going fast just lights up my world.
Tom (01:07:34):
And again, no offense to Rachel and her colleagues, but if you ask how were to do that in the middle of a therapy session, he'd tell you to F off. And you tell him to do that as he's going down the mountain, then that's a totally different scenario.
Rachel (01:07:46):
Exactly. I'm a big proponent of sit skiing as well. The only thing is I'm not a good enough skier as Jen is to actually be the guide. So I'm usually coming up behind and Kioni's done his double black run and I'm going, "Oh my God, kill myself going down this mountain." It's always super fun. And I think the piece there is the accessibility of that. Obviously there are mountains all over the US and internationally, and a lot of them do have adaptive programs where you don't have to have your own equipment. A lot of the times they will then give a lift pass to whoever is with that person. And I would highly encourage people to look at those because as Jen said, it's a wonderful family activity and holiday, but it's also extremely rewarding for those, particularly who sometimes aren't able to keep up in other sports.
(01:08:36):
As I said, when we go for Kioni, he's beating me down that mountain 10 times over. He's beating his friends who are extreme sportsmans down that mountain, and there's just something really cool about that and what that looks like. Paul's putting bicycle riding. And so I want to go back to you, Gavin, what are your top ... Let's do top three for everyone. And then Jen, I want to come back to you on two different things as well. Okay.
Gavin (01:09:02):
Well, I always first think about traditional sports because there is something to be said about the social component of that, the social cultural component. For Tom, for some communities, it could be soccer. For some communities, it could be basketball. For some, it could be baseball. I mean, there's very ... Getting out and playing catch is like a traditional family activity. So I think the most important thing to think about is that these are all activities that are ... Nothing should be off the table. If skiing is possible, then so should these other activities. And obviously it depends on the abilities and the strengths of the person, but I think that some of these other activities do have the potential. And adaptive rock climbing is another one.
(01:10:19):
And I will say that there was a ... She's now an adult with CP who wouldn't ... I mean, she had multiple falls a day, and she started exercising and really got into the exercise component. She had some other health conditions because she was overweight and actually had a gastrointestinal genetic condition that made her a precursor for that, or that was a precursor for that. And she really got into the going to the gym. There was a gym in her community, and she was very ... What she loved about going to the community gym was it was just a regular gym, and people were welcoming to her, and they called her by her name, and that was the biggest thing about it. And people would say," Hello, Dakota, "and she would show up to the gym just to say hello, and she would start to exercise.
(01:11:36):
And a few years down the road,
(01:11:39):
She got to where she could rock climb. She wasn't even a fall risk. She was a rock climber. So I think that when we think about even making it to some of these recreational or opportunities for sport, it may be that that fitness or exercise may be the place you have to start so that you can build up the capacity to do some of these activities. But I don't think anybody should think that just because they can't necessarily perform a sports skill where they are at a current point doesn't mean that there's not opportunities or they shouldn't at least try to get there. And again, it may be through a long-term fitness plan, but I think that that's a really important consideration as well.
Jen (01:12:34):
Yeah, for sure.
Rachel (01:12:36):
Love that thinking to go, okay, what do people's trajectories look like? And they're going to look really different, right? No one journey is the same. Tom, you said it best, and you've met one person with cerebral palsy, you've met one person with cerebral palsy. And so what that journey looks like for you and what's the good entry point? A good entry point might be actually," Do you know what? Let's just start enjoying this. "Or it might be, " You know what? I've got a really specific fitness goal because I need to be able to do that to get to be able to enjoy it. "We see it a lot. Sometimes people are like, " Oh, I didn't enjoy it because I couldn't access it or I couldn't do different things. So there are stepping stones that you can do. "Now, Paul wrote in the thing about bicycle riding.
(01:13:14):
Absolutely agree. The amount of adaptive bikes now that are
Tom (01:13:17):
Available
Rachel (01:13:17):
At the market are extraordinary, whether it's a hand bike, whether it's a reclined bike, whether it's a trike, it's pretty amazing. And obviously now within those bicycle pieces, you've got then assisted biking too with all the e-bikes and what that looks like. I think that space has really evolved. But another space that has evolved is also frame running gen. And I just sort on frame running because frame run is really interesting. It's going to be a Paralympic sport, which is going to come into LA, but it's also then really has opened up for so many kids this ability to actually access sort of upright what is quote unquote running. To your point, bring back to that beginning conversation, girls who run and what that looks like, Tom. So Jen, do you want to just expand a little bit on that and your experience with
Jen (01:14:08):
Framerunning Yeah. So we got involved in it, I think I first heard about it in around 2018. Theresa Moulton from Northwestern Shirley Ryan Lab was doing a presentation on it and she said, "This is great for people who are GMFCS4s who are non-ambulatory." And I looked at her, I was like, "You've got to be kidding me. This exists because frankly, my son hated the gait trainer and it was miserable to him." But you could tell that he wanted to go and he just wanted to go. And it wasn't really that he needed to get both feet cyclical and he just wanted to move forward. And so I was like, "This really looks like something that he'd enjoy, something that would be fun." And she told me where we could meet with somebody who was bringing them to the US and she had a good point.
(01:15:07):
She was like, "As a physical therapist, I had to get my head around this because it doesn't look pretty. It doesn't look ... Everybody's in alignment perfectly. It's a little bit of a mess and they're going to go how they're going to go. " And when I watched the videos, I was like, "Oh my gosh, everybody looks a little bit different doing this. " And we got him a frame runner and he started out just going down our street. And this was right about when COVID hit. So we were all home and he has a great friend who is just highly motivational to him. And they started out just doing it, got down the street and then got into going around the track and we watched his time decrease. It would take a half hour to get around the track and then it got to 15 minutes and then he was flying around the track.
(01:15:56):
And then by the time school came back live or whatever in person, the track team at school let him come and be part of their meets. And so he was able to go out there and be part of this inclusive track team. And really, it was so neat to see him get into this and gets his heart rate up. It doesn't look pretty, but it's been a fun sport for Bower and I know that it's expanded nationally. There's now a great website that will tell you about all the different programs that are here in the US and how to start your own program if you're into frame running. So obviously when we have this recording up, we'll also add that to the resources, but it's definitely a great sport for all CP levels, I would say. But for those who are more involved, I would say it's a really great option if you want to get up and running.
Rachel (01:16:56):
Love that. And I think, all right, we've been chatting now and I feel like we could just continue chatting forever. We'd love to just hear all of these thoughts on everything. But all right, one final takeaway for everyone who's listening, when you're thinking about adaptive sports and recreation, keep it quick. So what's one fun takeaway that you want our listeners to know and the community to think about? Paul, Tom, you go first.
Tom (01:17:23):
I would say the best thing we could do for our community is be okay with whatever your sport activity looks like. We're still stuck in this mindset of it doesn't look close enough to normal, so I'm not sure I can do it. And I love to operate in that saying, "If you do you, boo, whatever it looks like for you, go do it. " And if you celebrate it enough, others will jump on your bandwagon and start doing it your way.
Jen (01:17:52):
That's awesome. I love it. I love that. Got it.
Gavin (01:17:56):
Yeah. I mean, do what you love and have fun because the goal is to be physically active for a lifetime. So you have to do something that you're going to enjoy. And like Tom said, don't be afraid to get out there and do it.
Jen (01:18:14):
Right. And that was really my takeaway too. Just don't be afraid to try. Don't be afraid to ask. Don't be afraid to look for these things and then give them a call. And I think doors will open and the more people who are out there without fear saying, "Hey, we want to try this. " Folks will realize, "Hey, everybody should be doing this. " So yeah.
Rachel (01:18:39):
I absolutely love those three things, like thinking about that it's what is it more than participation? It's about the building confidence, connection. It's knowing that not all programs are the same and that life long-term engagement across the lifespan is really important. But then I love that you all pretty much said most importantly, there is always a way to start.
(01:18:59):
Who knows what it looks like, but there's always a way to start. And so if you haven't, think about starting. And so hopefully this has motivated any of you today who haven't started something to start something. As I said, make sure you do speak to your team. And if you don't have a team, try and build that team around you. But we have been thrilled to offer you this as our first cerebral palsy connect. Thank you everybody who was listening and participated and for all your wonderful questions. We will make sure all of that gets shared with you after the fact, and this recording will also be shared with you as well. But thank you very much to our speakers, Gavin and Tom, and as always, Jen, bringing so much to the conversation.
Jen (01:19:37):
Thank you all.