Jen (00:06):
Welcome to the Cerebral Palsy Health Podcast. We dive deep into health topics that impact people with cerebral palsy, such as stem cells, genetics, neuroplasticity, exercise and fitness, nutrition, accessibility issues that could be confusing are controversial, and those that offer hope but might not live up to the hype. I'm your host, Jen Lyman. Join me in conversations with leading experts as we separate fact from fiction tackle tough to understand topics and try to shed light on how best to maximize and optimize health participation and quality of life for those with cerebral palsy.
Good morning, Natalie.
Nathalie (00:48):
Good morning, Jen. Yeah, it's early. You can see that it's starting to get dark outside in Atlanta.
Jen (00:56):
It's getting dark outside, is it? Oh yeah. The rains are coming in, aren't they?
Nathalie (00:59):
Yeah.
Jen (01:00):
Yeah, it's already raining here. We went for a very dark walk this morning to get the, yeah,
Nathalie (01:09):
I just got back super late last night because the weather delayed my flight. I was in DC talking about a hot topic, which is early detection of cp, and so my flight, because of this terrible rain we're having got delayed massively and it means that I didn't get a ton of sleep.
Jen (01:31):
Well, that's what coffee's for or tea if you're having tea in the morning. Yeah.
Nathalie (01:38):
You and I have talked in a previous podcast about early detection and intervention. Remember it was I think three podcasts ago, something like that. And so it's funny that we talk about it, but it's finally a hot topic for neonatologists.
Jen (01:55):
I think it's due to your work, number one, and you have really pushed this forward, which it's tremendous
Nathalie (02:05):
With the CPF.
Jen (02:06):
Well, yes, it's the whole team, but I think that it's finally being recognized now. The key is getting everybody to do it. That would really change the world and it would be so exciting. And fortunately you have the evidence to show how to do it and why it works, and that's a big deal. And so the fact that you got to talk about it as a hot topic in DC is tremendous. And if there's a way that we can promote that more, then I would love to do that. Well,
Nathalie (02:39):
So you're going to think I'm unfaithful, Jen. I went on another podcast to talk about it called The Incubator, and it's a neonatology podcast done by these two fabulous young neonatologists who do this all in their spare time, but they've been doing it for three years and they've accumulated this huge following. And they were at the conference and they asked me, would you talk about this as a hot topic? What does it mean for our families? And they're so family oriented. That's really why I did it, but I was unfaithful. I'm going to admit it.
Jen (03:19):
Well, first of all, I think the fact that they named it the incubator is fantastic, isn't it? They're awesome. It's quite clever. That is very clever. So I think the more you can get this information out there, especially what we've talked about before, families start to see things before perhaps have a diagnosis. And if families are in the nicu, if they've been told about this podcast that's just about NICUs and they're hearing you talk about early detection, early intervention, if it plants that seed that when they go home with their baby and maybe they see some things that are concerning to them. I mean, it gives me chills. So it You're okay with me going on another
Nathalie (04:03):
Podcast? What a relief. Absolutely. They didn't have coffee. They did not have coffee. But no,
Jen (04:14):
I hope you had as much fun with them as you did with me.
Nathalie (04:18):
I always have fun talking about stuff I'm passionate about, but I love what you said about parents notice stuff, and I think that's really relevant to what we're going to talk about today because you and I as parents very early on, notice stuff that was maybe missing in our child's overall wellbeing and wellness regimen. And I think that's what you want to talk about today, right?
Jen (04:45):
Absolutely. Yeah, absolutely. And I wanted to kind of go back in my history for a second and talk about why I do what I do today, but also what drives me and back, okay, I'm going to date myself 30 years ago, in between 30 years ago after I graduated from college, I was teaching dance. I thought I was going to be a dance therapist. I was going to go back to school, become a dance therapist, and I was teaching dance to kids of socioeconomic disparities and with behavioral and emotional difficulties. And as part of the dance program, I partnered up with Nemours Children's Hospital and they had their physical therapist there, had a group of kids with cerebral palsy who wanted to dance, and my little group of kids and their group of kids, we got together and we did, we called it the De Morriss Nutcracker, and
Nathalie (05:51):
That's awesome.
Jen (05:52):
Was really cute. And we had a performance at the end. And then that experience really taught me a lot, but it ended up going back to graduate school. After that, my focused on health and human performance, but also what I learned from that experience was that I really wanted to work with kids with disabilities and that not just participation, but wellness and being part of the community and seeing these kids not be in physical therapy but be in an active activity where they were exercising and dancing and being creative and expressing themselves and being with other kids that were typically developing was really meaningful to me. And so I ultimately became a recreation therapist so that I could do it because you're the fun one. I'm the fun one that sort of has driven me, but that whole holistic wellness and wellness for people with disabilities, and it shouldn't be so hard. And I hear it from our adult community and then I saw it with my own son and you have too. And I wanted to talk about that for a second because it really does drive me
Nathalie (07:15):
Well, remember what Peter Rosenbaum talked about the five F's?
(07:21):
I do think fun is really important and if it can be combined with fitness, then so be it. Absolutely. But because I'm just going to say I am not someone who enjoys the act of exercising. I enjoy the results and I know that it's good for me, but I will say that fitness on its own is not something I'm not very athletic naturally. And so I know you are very different every time I see you, you're moving, you're active, you're doing some workout, and you seem to genuinely enjoy it for you. Fun and fitness seem to go together for me, there's fun and there's fitness a very few times do they overlap?
Jen (08:11):
I do appreciate that and I try to keep that into consideration. It is for me, it's not just fitness and fun, but it's also community. I find that having a gym to go to creates a community for me, and that's also meaningful. It's other people who like to work out like I do and have fun doing it. And that is truly meaningful to me. And I have a hard time when I'm not somewhere where I've got that in my life, it definitely impacts me. My husband would probably be more like you. And just the opposite is I have had to drag him to the gym, but Bauer, we can get into it. But that has become a little community for him too. And I think that's been really a bright light in his life that in New Orleans we had a wonderful place where he worked out.
(09:11):
And then here in Philadelphia we've found a place where he's working out now that also has the potential to create that community for him as well. But let's get into it. I have had podcasts with Mary gti, a physical therapist who works with adults with cerebral palsy on fitness across the lifespan, and then with Theresa Molten, another physical therapist. They're both researchers as well. We've talked about frame running specifically because I don't, I can talk to you length about that. It's a wonderful way for kids who are gmf CS fours and fives, non-ambulatory, people with cerebral palsy, people with ataxia who have balance issues. It's a great way for them to get their cardiovascular fitness because they can run and a frame runner. So we have talked some about it, but I wanted to talk more generally with you about it. And first, why is physical fitness important for people with cp and what are your thoughts on how, what's happening right now and why people with CP don't necessarily get as active? I get it that we have physical differences, but why aren't we getting pushed
Nathalie (10:40):
To? I think some of it's just people giving up on it. They're like, well, there are so many other priorities or they can't possibly do it, and they forget that the first, so one of the first recommendations they have for everything from hypertension to diabetes to obesity is diet, nutrition management and exercise. This is what every kid from zero to 21 gets and adults get too. And so I'm like, why? If we know that kids with CP and especially those born preterm, because if your preterm on top of having cp, which is about, we know about half our kids with CP now are born preterm more or less or in the nicu, and we know that they have these increased risk for what's called metabolic syndrome.
(11:35):
So this constellation of obesity, diabetes, hypertension, cardiovascular problems. So we know this, we know they're going to be at greater risk. We know because of cp, their muscles are different. We know that the quality, the muscle in CP is different, the fibers are different. How the fibers move together is different. And there's even fat cells that start infiltrating the muscle in cp. And you're just kind of like with all of this, why is there not from the youngest age an emphasis on cardiovascular health? So that's fitness as you're taught, you say fitness. And I think I really think that it's not intentional, it's just that A, I'm overwhelmed and I have to tackle so many other problems in this kid's health, and B, I just don't know that it's possible. How could it be possible? So I don't think it's bad intentions. I really think it's just lack of knowledge, ignorance.
(12:54):
And also if you think about when our kids were young, this really, really huge importance that's given to developments and function, development of function, right? Development of motor skills, and it's really interesting. But I think these two things, one, which is a really good intention to promote developmental skills, and the other, which is just ignorance from the medical providers sometimes just because they haven't been, and to be clear, they haven't been given easy things that could make it incorporated into their office visit. So especially when they only have what, 10 minutes to see you. So I think it's a combination, but it really started frustrating me very, very early
Jen (13:47):
And thinking about the functional side. And I feel like anytime I would talk to the doctor about, oh, let's increase fitness, it always went back to, okay, well we need to talk to the physical therapist. But then I feel like the physical therapists, their focus was very much on function and create and helping with the developmental skills and the motor skills. And sometimes I'm like, I don't care about the motor skills. I don't necessarily care right now if it looks perfect or if he's doing it the right way. I want him to get the exercise. I want him to get his heart rate up and get his blood flowing and wear himself out because he's tired from movement.
Nathalie (14:42):
Expand his lungs right too. That's the other
Jen (14:44):
Things. And just get moving, just getting in the pool and kicking his as badly as it looks, as horribly as it looks, but getting his heart rate up so that we can have that increase, that pulmonary function. I think maybe fear is another one. We should have our own F words that are different. What the obstacles? Obstacles,
Nathalie (15:14):
Although we all experience overwhelm and ignorance, I don't know that it's, I don't think a pediatrician is afraid of that. We're not taught to, I mean, I think especially most pediatricians now would be the first to say, I don't know
(15:36):
And I need help on this, or I'll have to look this up. There's less this idea that a doctor has to be all knowing and unfailing. They're just human beings. In terms of physical therapists though, what you bring up is really, really interesting because I don't know if it's the training that's different because when I started needing to find that fitness component for my son, I ended up having to go to adult gyms. So there was this tiny little kid who was working out like a shrimp sometimes obviously with a ton of supports. Just let's be clear, it's not like he could go in there any other person because he does have cp, but he would go to exercise physiologists love them, they're amazing. They understand that, and especially if they work with adult PTs who have more of an emphasis on sports medicine and sometimes orthopedics. I think that it could just be the education that they get.
Jen (16:56):
And we did the same thing. Oh yeah, when Bauer turned 12, he had had hip surgery and we were at that point where he really needed to strengthen and we went to, it was really neat. It was a young woman who had opened up a gym. It was an adult gym and Bower Bower was the only kid it was going there, but she had a degree in exercise physiology. She also had a degree in special education, so she kind of got Bauer from the get go and she was his first personal trainer and he'd go in there and there'd be all these big guys in there working out, but she knew how to modify things for him and really help him strengthen after that surgery and understood what he needed. And it was different than after the surgery. We had gone for this intensive, it was called a specialized transition program where he came out of surgery and we were working on rebuilding skills, but that didn't necessarily translate to strength. And so that's where I saw that gap too. And we ended up going to this trainer and from there, yeah, we've always gone to a gym since then and we've tried a few different gyms. We've tried some that are special just for people with disabilities. And then we've tried regular gyms for everybody, and I think they all have a role and it's finding the right fit too.
Nathalie (18:43):
Yeah, I agree. I mean, we went to gyms. I remember this amazing gym I found in Columbus when we lived in Ohio. It was called Columbus Fitness Consultants. Now let me be clear. The first reason I went is because it was two miles away from my home. When I tell parents, they're like, what pediatrician should I choose? And I'm like, honestly, every pediatrician is going to be pretty good, but choose one that's within five 10 minutes of your home. And I don't know if it's the same for you, but for me, the activation energy and trying to fit in a schedule that already incorporates therapy and all these other appointments and everything else, but if on top of it I have to drive 35 minutes just to go to a gym for my son, I won't do it for me. I might do it for my son, but I talk to, you seem surprised, but I'm not driving 35 minutes to go. I don't seem surprised at all. That is 100% exactly how I feel. There is absolutely, for me, it's about convenience. And if I will resent, I will resent it. If I'm driving all that time, as much as I love my son, if I'm having to drive 35, 45 minutes for a 50 minute appointment, that is,
Nathalie (20:07):
But on top of it, something that has to happen on a very regular basis, I don't resent it for a specialist. I've driven two and a half hours or three hours to go see a specialist. But when it has to be something that's part of daily life, then whoa.
Jen (20:25):
But
Nathalie (20:25):
Anyway, this gym, it is a fantastic gym because they are adults and they did not have anyone with cp, but the physical therapist and exercise physiologists, they even had student interns there because they were this type of facility where they thought that creating trainees that were aware of the importance of both rehabilitation and other and fitness was really important. And so they had PT students and exercise physiology students, and it was amazing because they said, no, we've never dealt with someone like Leo before, but we're willing to try. Will you work with us? And I said, sure, let's do this together. And I wouldn't say that it was a community for him because Leo's a little bit like me, really introverted. We don't get our wellbeing from being out in the community all the time. We prefer small doses of more special relationships, if that makes sense.
(21:33):
And the rest of the time we tend to be very much not in large settings with lots of people. It doesn't make none of my family's that way. So when you were talking about that, I was like, Ooh, I don't totally relate to that. But it did create this sense of belonging. And so I do think belonging is important even if it's not within a community. And so quickly he felt like he belonged there. There were these PTs and exercise physiologists and students that he built rapport with, and a lot of them were men. And so this was another thing that's really important, and I'm sorry to talk about it if it's not politically correct, but we have you and I boys
(22:20):
And a lot of early PT and ot and even speech sometimes is wonderful, wonderful women who've decided to take care of pediatrics. Now it's not just there, it's all of pediatrics. We know that more than 70% of pediatricians are women. This is just a fact. And it's a little bit the same in early therapy, but it makes it hard when you've got a young man, well, I call it a 12-year-old, a young man. I'm sure that you bower well, you'll have to tell me what he insisted on being called, but it's important at that age to see people who are going to encourage him grow into that young man who are not just women. And so that's what it was just such a great place. And so the one thing I want to talk about later though is that exercise after surgery for him was pain management and it was stress and anxiety management. So there are other aspects of exercise beyond cardiovascular and cardiopulmonary fitness that are really important and it's what exercise does to your brain. But I'm going to let you talk. I want to know how did Bauer feel about having to do stuff that other people did, like weight training or anything like that?
Jen (23:58):
I can tell you it was one of those things where he had success and he was not just success, I dunno how to, it wasn't like he was getting some sort of special functional skill like walking or something like that. He was able to hold the dumbbells and do arm quas because for him, his spasticity also, it's easy for, but that was something. And so he'd get that rise out of folks that were there cheering him on and talking about having male influence. He had a phenomenal, phenomenal helper, Eric, who I talked about all the time. And he ultimately became a personal trainer as well, but from the official experience. So he was Bower's aide and he worked for me and he would go with him to all inclusive fitness. This was the gym with the personal trainer. And then from that experience, Eric became a personal trainer and they ultimately went and there's another gym that Bower ended up working out with all the guys.
(25:05):
And they had for him, he would be doing pull-ups. He could hold onto that bar and pull up and you'd have all these guys cheering him on. And it was success in that way. And of course that does lead to function because he's strengthening his back muscles, he's strengthening his core and his arms obviously. And that did lead to him being able to do things easier, help with transfers, he can pull himself up and hold on much easier. And for me, who is exactly the same size as my son, him being strong and having the ability to activate his glutes and activate his back to help those transfers are a lot easier. And I can tell when he gets weak when he hasn't been working out and he does lose that function. So I don't want to discount the role of function here because it does make a difference. But I think too, we've talked about sleep on this podcast,
(26:17):
How it helps with sleep as well. But yeah, you brought up a good point with the male role model here. And when you're in a gym, you've got a lot more guys and for our boys, our young men, and having that relationship with Eric, and now he's got that with Dan and Pete who worked out with him on the weekends, and he's the first, we get there and he looks at me and he is like, bye mom. And I leave the room. And as much as I'd like to of it, I do not. And I let the guys do their thing and they have a great time and I can hear them.
Nathalie (27:01):
I have to tell you about that. So they convinced Leo, the guys at the gym that it would be a great thing if I joined. And we had one session in common once a week where I was working with a trainer and tried to not be such a wuss. And Leo would be working there too. And they organized a competition, but it's totally unfair to me. And so you think you don't have cp, why do you think it's unfair? Well, it turns out that a young man, I'll use the term loosely, who has been working on resistance training and a whole bunch of stuff like core balance, oh my gosh, they made him work on these things that are so unstable to try to activate his core. And they made us compete on certain exercises where they knew that he'd been working on his strength and I had maybe not.
(28:13):
And he got so much satisfaction on Sundays of saying, Hey, even with a cup of coffee, mom, I'm beating you at these reps. And maybe it's spasticity, maybe it's just the fact that he'd been working out and I hadn't. But there was that sense of competition that he really enjoyed. And I was shocked because before that, Leo had done adaptive activities like rock climbing or a lot of adaptive things where there wasn't as much competition as competition against self. And that's what he'd enjoyed. He enjoyed pushing himself, but not having to compare himself to others. And I don't know if that's because of cp, but probably, and then he's with his mom who's totally out of shape and he's getting this terrible satisfaction of making fun of me as he can clearly do more reps on certain machines than I can. I think it was really great for him.
(29:27):
It motivated him. I have to say it motivated me to, because it's kind of sad when your own child can doom more things than you can. And there were moments on balance elements where I was like, okay, Natalie, you have no excuse here. Balance is not something you should be working on your core. This is your posture, right? Because how we hold even our head on our shoulders is a really important thing. And you can talk about it in Bower's situation, but for me, I was like, man, my son has better neck posture than I do from sitting at a computer scrunched all day. So it was an experience in I think, what do they call it, a learning experience. It was really humiliating.
Jen (30:30):
I wonder about folks there trying to find gyms and getting into fitness with their kids. And it makes me think that maybe that family fitness and that family workout is a good way to start. And finding those places that where you have belonging or community, however you look at it, where you can work out together and you can have a competition. I was giggling when you were talking about that. I actually had a competition myself against Bauer last night working out myself without him. I was in this class and we were doing rows arm rose and Bower's up to 50 pounds doing rows, which is really, really, yeah. And so I was thinking about him when I was doing the row because I was thinking, he's beating me, he's beating me. So he served his motivation even without being there.
Nathalie (31:37):
That's fantastic.
Jen (31:39):
Yeah,
Nathalie (31:40):
That reciprocity is really important. I do think you're right. And I do want to bring up the fact that one of the reasons why finding a place where there is PT can be important, and that has to do with reimbursement.
(31:56):
So let's be very clear. There are times in my life where I've had to say, I am incredibly fortunate because I can afford to cover what insurance doesn't. Being stuck in the middle sometimes isn't fun because insurance will only reimburse like pt for example. So working out at a place where PTs supervise can really, really help you defray some of those costs using your flexible spending account. So that's another thing that sometimes employers don't tell you is that these gyms, they can let you use your flexible health spending account. So if you put aside in that, you can use it for your child's exercise, which I had no idea until I did it. And it was like, oh, oh, okay. And then if you have Medicaid, for example, a child and you have Medicaid, you can use the PT stuff, but there's still no good reimbursement for health. And that's a problem with the system. And you know how donde I want to fight windmills and the system is one of them. The healthcare system, I just wish they reimburse Silver Sneakers, which is a program where people who are retired get to participate in health activities and it's reimbursed by Medicare. So why doesn't Medicaid or health insurance reimburse just health? What about
Jen (33:40):
Those insurance companies? I know that in our plan, I get things from, we've got Blue Cross Blue Shield and I've gotten things from them saying, oh, we'll reimburse you for a membership, a gym membership.
Nathalie (33:53):
Cool, amazing.
Jen (33:56):
Maybe that's just our plan. But it seems like a health initiative that they're invested in that.
Nathalie (34:05):
Yeah, sometimes they won't. For ours, it's more they'll reimburse us if we wear a Fitbit, not quite the same thing. I'm
like, you know what, Leo wearing a Fitbit isn't going to show that much.
Jen (34:17):
Right? I was just thinking one thing that is interesting to me, I'm kind of curious how, maybe this is a really big question for you, but when you think about development, child development and what happens, you were talking about it a little bit earlier, but you've got these metabolic syndromes, but when you have a child that has a disability like cerebral palsy, who is a developing body,
(34:52):
Body is developing with this disability, so how is the impact of a sedentary lifestyle on development? So they're sedentary, not because they want to be. What does that look like? You see all these adults now with CP and you're hearing we've got more research coming out and then I talk to adults with CP all the time. Every single one of them is in pain. Every single one of them is having issues of decline. And that's what I'm hearing from the adults. Is this a result of the development? And maybe this is just a stupid question.
Nathalie (35:30):
No, it's not stupid. And I really think here, I just went yesterday, I told you I was at this conference and someone was talking about preterm infants, including those with disabilities at 38 years. And they were just talking about differences. And I thought things are different. One of the things that if we pay more attention to, so exercise, we talked about getting cardiovascular exercise and pushing oneself. You talk about breathing hard, but there's also pushing your muscles till you feel strained and pushing them to grow to get oxygenated. There's also the effects that what happens when certain neurotransmitters and hormones are released has two effects. First of all, it helps with pain mitigation, it helps manage pain. And you think, how is exercise, which is sometimes painful, going to help you manage pain? Well, in the long run, it does help. And there's a ton of research on that, not just N ccp, but in every disorder.
(36:44):
And you think if we started them as from a very young age, understanding that, well, we know this, brushing your teeth and we'll have a talk about that, brushing your teeth helps prevent plaque, bacterial od overgrowth, all these things that will later lead to immune dysfunction or inflammation. Well, it's the same thing with fitness and exercise. If we started, instead of just brushing your teeth with stay active, active, active, active, and no matter what shape it takes, but push your heart, your lungs, your muscles to do things that are beyond what they feel like they can do, then we would have an impact later on. We know it works in typically developing children, and it works in CP as well. So it works with pain, it helps mitigate that directly, but through another process. Remember, exercise can help with stress and mental health. So exercise can help manage and decrease stress, same thing.
(37:55):
Hormones, neurotransmitters, inflammation, all these things. But it also helps the brain. But I want to say it's so important because if we don't give children a tool very early on to manage their stress and their mental health, mental health feeds into pain. If you are anxious or depressed, then what happens is that it feeds on your pain, it increases your perception of pain. So if we taught that early on, what would happen is that we would give them tools and we would also set an, when we would go to the doctor, we would be able to say, you need to address the fact that my child can't exercise right now. And they're like, if they said, well, I don't understand what about function? What about GI and stuff? And you can literally say, if you address my son's fitness or my child's fitness, what you're actually addressing is all these other things, right? You're addressing his GI problems, you're addressing his mental health, you're addressing his stress, you're addressing his pain. All these things that you think you're so overwhelmed that you can't manage. If you could just help me manage that one thing, then it would impact all these other things that you're having trouble managing.
(39:20):
And so I think that that's why it's so important. And if I were to say one thing to a physician taking care of my child or an adult with cp, it would be help me figure out how to stay healthy. And one of those things you're going to have to help me out is help me find a place and people and a type of exercise and fitness that makes everything better.
Jen (39:49):
Absolutely. You nailed it in my opinion. I guess the question I have, and I think this is what most families would be wondering, listening to this is like, oh my gosh, how do I find that place? Where do I find a place that is going to be comfortable working out with my kid? And also, when in your child's life do you start looking at that? And it was always important to us. And I got creative and found from early on. Swimming was something that we did just because I knew that if we got him in the pool, he'd be able to really move and get his heart rate and have fun. But that was definitely an exercise. But as he got older and we were looking at the strength side of things where we really felt like I personally felt like he really needed to strengthen, that's when we had to get creative, find a gym, because I felt like the physical therapists just weren't getting it. I loved his physical therapist, but their job was not strengthening him. Their job was absolutely helping him learn the functional skills he needed to learn.
Nathalie (41:05):
Yeah, but I think there's another solution too is, and I was lucky this way, his therapist said, we don't do this, but there's adaptive cycling. There's adaptive rock climbing. And those two things, Leo never really loved adaptive cycling. I mean, we had that little snake bike. He liked moving, he liked it because they would let him move without knowing how to ride a bike. But adaptive rock climbing. So the rock climbing community, I cannot tell you, is so inclusive. I've never met a rock climber who looked at my child and said, this is not possible. And I'm like, how is it?
(41:55):
They're remarkable people. And I know I'm generalizing, but I've been to so many rock climbing gyms across the country, and there's always this mindset from the young people or the older people there, which is, yep, it's me against the wall. And they're like, this can be done. So I think you start even at a young age before you can go in gyms with activities that are going to encourage that. And if your child doesn't want to be on a bike, it goes too fast. He doesn't like it involves other things. I would find a rock climbing gym anywhere, anywhere. And the people there are so great. You asked about the other thing, how to find, well, I think unfortunately trial and error came to Atlanta, and I literally called 10 places first and I said, I see you have physical therapists and exercise physiologists here.
(42:57):
Have you ever worked with a child with cp? Not in rehabilitation, but in fitness, right? I went to some of the sports gyms and I even tried them in Atlanta. They have a lot of stuff for athletes, like young athletes. And so I went there and we tried it out. We tried out one time to see each time. Well, and I always am very careful. I'm like, do you have any way for us to try this out once? Because before I commit, I want to know what this is like here. And so sometimes, unfortunately, it's just saying, alright, maybe it's a sports, adaptive sports that I need to do when they're really young and they just want to have fun. Maybe it's I'm going to have to be really strong and understand that it is a privilege for my son to be working at their gym, not the other way around. Don't go begging. And I would say this to parents because it's like we have this tendency to be so pathetically grateful for anyone who will take our child, but that's not the way to do it. It's to say, alright, my child deserves to have what everyone else has, and I'm not going to be pathetically grateful. I'm going to be choosy. I'm going to find something that works for us. And where we're interviewing them, they're not interviewing
Jen (44:29):
Us. I definitely, I can relate. And I feel like if it's clear that your child isn't welcome, if it just feels like they're making an accommodation for you, then you don't want to be there. That's absolutely.
Nathalie (44:47):
Or even that they don't get it when you say, my child needs to be fit and they revert to their training as a developmental therapist. I don't want that. Why does my child not deserve the same training you're giving these athletes?
Jen (45:04):
A hundred percent agree. And I think we need to be more fired up about it. And it's hard to talk to the adults with cerebral palsy and hear their struggles. And also, I do want to mention that, like you've said before, not everybody likes going to a gym. Not everybody likes working out. But I want to point out that this is something that everybody, according to the CD, C, we should all be doing it. And whether you like it or not, you've got to move. And this impacts everybody no matter what. No matter what your body is like.
Nathalie (45:44):
And like I said, Jen, even if you're more of an introvert and you only like to relate to a few people at a time, being in a gym full of people isn't for you. There are places and there's a way to combine it. For my son, what's more important is the stuff that we can do on our own. So there's maybe one session a week with a trainer, and the rest of the time we have resistance bands and things that we can do at home or he can do in his dorm room. It's because he doesn't like being around a lot of people independent of cp. This is just us. Remember I told you we are geeks, we're introverted geeks, and it's totally not our jam to go in a gym full of people. What he has is what's called an HEP. And that's another thing I would tell people that you have a right when you go see a trainer or a physical therapist to ask for a home exercise plan or HEP and some trainers are wonderful, literally, I feel like it's worth the extra to pay a trainer or a physical therapist to text my son randomly.
(47:06):
So he never knows When have you done your HEP? Remember it was this and even one or two texts a week. I know there are really cool apps now that can do that. And they found that a younger generation of people, not me, finds apps with reminders and coaches really appealing and that they work. And so that's another thing I would do, even if you can't go to the gym, but once a week, work with those apps, try to combine the two so that your child or your person with CP gets that perfect balance of there's the in gym part, but there's the part that you do on your own, the HEP, that through these apps, you can also belong to a community without the same kind of, let's say extroversion needed to be part of that community. Because apps let you and these communities on apps, right? They let you be part of a community, but not you can control it much more. You don't have sensory overload to the same level that you could otherwise.
Jen (48:24):
Well, we need to start wrapping up and I'm curious what your top two,
Nathalie (48:32):
Oh no, you have to do top two because I've already said some stuff you have to do first. You first, you first.
Jen (48:40):
Well, I think you're going back to the idea of there is a difference between function and fitness and you sort of have to have both. And kind of knowing that your physical therapists perhaps are going to be working on those functional skills, and that's really important. But then figuring out what it is that your child enjoys doing, and that would help promote fitness and help promote a healthy heart, a healthy muscles, all of those kinds of things and not think about so much what it looks like. It doesn't just get them moving. And I feel like that is so important to delineate between the two and know that you're going to have these sessions that are specific to a specific purpose. Let's say you're working on your hand use or you're using whatever, using a gate trainer for function. But that's different than working out. And I really think that parents need to understand that. And then I guess also don't be afraid, like you said, call around. And I have met so many amazing people who are interested in this and want to work out with my kid. And I think that not being afraid to ask around and find those resources in your community, they do exist.
Nathalie (50:21):
Yeah, my top two one would definitely be for your pediatricians or doctors. And it's to say when your child is too even. So talk to me about activity and fitness. Don't just talk to me about brushing your teeth because I know a p recommends children under two, for example, should not be watching screens. Screen time should be limited. Even after that. It should. But don't assume and talk to me about activity and fitness. And if you don't know, point me towards people who do or look it up because just allow them to not know and then they need to help. So talk to your pediatrician about activity, and it's okay to say it's just like brushing teeth for a child with cp. So from the age of two on, talk to me about activity and fitness. And then the second thing I would say is to parents, you've talked about advocacy, is to understand that just like for anyone, fitness and activity, whether they're functional or not, are going to impact every aspect of the human body, including the brain.
And I talked about stress and mental health, but it also helps with acquiring knowledge and developing cognition. So know that it's a lifetime habit and it's a lifetime habit that will impact every part of the body, including the brain. So if you think that and you're like, what other things do we do apart from eat and breathe, maybe that can so impact the lifespan and every part of who we are. So if we think about it that way, activity and fitness are medicine. They're the most powerful medicine, I would say, apart from the love and connection you can feel with others.
Jen (52:47):
Wow, that's amazing. Well, I appreciate the love and connection I have with you.
Nathalie (52:59):
I do too. Especially in this holiday season. Yes.
Jen (53:02):
Yes. Well, until next week, we'll have to talk about over the next couple of days, let's come up with our next topic. And thank you, Natalie. I've had a wonderful morning with you. It's been a great copy.
Nathalie (53:16):
I've had a wonderful morning with you, Jen, as usual
Jen (53:21):
Today.
Nathalie (53:22):
Alright, have a great day. You too.
Jen (53:25):
Bye. Thanks for listening to the Cerebral Palsy Health podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at JB Lyman at Mac. That's MA c.com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it is not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast or any other medical concerns with their personal medical team.