Rachel:
Hi everybody. And welcome to our seventh Town Hall. My name's Rachel Byrne, and I am the Executive Director of the Cerebral Palsy Foundation. And I'm really excited that you're joining us this evening to talk about and understand why exercise and physical activity is so important for health. We know that exercise and physical activity impacts everything from weight management to bone health, to cardiovascular fitness, to chronic disease, premature aging, mental health. So our goal really for this evening is for you to walk away with a new understanding of all these different things, specifically as it relates to your own physical activity levels, your children's physical activity levels. And we've got an absolutely incredible lineup of panelists who'll be joining us this evening and they include Dr. Christopher Modlesky.
Rachel:
And so Dr. Modlesky is from the university of Georgia. He is the Athletic Association Professor of Kinesiology and is the Co-Director of the UGA's Pediatric Exercise and Motor Development Clinic. He is the current Chair of the Research Committee for the American Academy of Cerebral Palsy and Developmental Medicine. And he has been studying disability with a special emphasis on children with cerebral palsy for nearly 25 years. Welcome Christopher. Also joining us this evening is Dr. Byron Lai, who is the Assistant Professor in the Department of Pediatrics at the University of Alabama at Birmingham within the division of pediatric rehabilitation medicine. He has been conducting exercise research for people with disabilities for over eight years under the UAB Lakeshore Foundation Research Collaborative. He completed his doctoral training and post doctoral fellowship at UAB within the Department of Physical Therapy in the School of Health Professions. And he has over a decade of experience in clinical exercise training among various groups of people with physical and cognitive disabilities.
Rachel:
Also joining us this evening is Dr. Wendy Pierce, who is a board certified in physical medicine and rehabilitation with a pediatric subspecialty. Her focus is on improving the function of children with chronic illnesses, including cerebral palsy. She has served on several committees of the American Academy of Cerebral Palsy and Developmental Medicine. And she is a member of the data review team for the Clinical Gait Lab at Children's Hospital and serves on the board of the Commission of Motion Lab Accreditation. She and her husband Aaron have also volunteered for the Adaptive Ski Program at Children's Hospital in Colorado, which is how they met. And we're actually going to be talking about adaptive skiing a little bit later in this panel.
Rachel:
So we are absolutely thrilled and excited to be having all our panelists joining us this evening. And I am just looking to make sure it looks like we're having a little bit of a technical difficulty with one of them. So please hold with me and we'll hopefully have them all joining us shortly. So hi everybody, we are actually live on our panel. Thank you everybody for joining us. We are hoping to get Dr. Christopher Modlesky back on board. Unfortunately, he's just having a little bit of a technical difficulty. But to get us started anyway, please welcome Wendy, Byron... Wendy and Byron. And we also have our ASL interpreter Greenie joining us this evening. So we'll get straight started with the different questions. And sorry, Wendy, to ask you while you're on the move, but-
Wendy:
[crosstalk 00:03:49] No, we're okay. I'm good now, thank you.
Rachel:
Since cerebral palsy is the most common, lifelong physical disability. Can you please share a little bit about what cerebral palsy is and how it affects motor function specifically?
Wendy:
So cerebral palsy by strict definition is a group of permanent disorders of development of movement and posture that causes limitation attributed to non progressive disturbance in the developing and fetal brain. So all of you are probably very familiar and live the definition on a day-to-day basis. And so it affects motor function because there's a disconnect between the areas of the brain that are controlling that level of motor function. And sometimes that can be in areas of strength or even coordination. Specifically, spasticity is a movement disorder associated with a specific pathway down the brain that results in a hyperactive stretch reflex. About 80 to 90% of folks who with cerebral palsy do have spasticity. And the reason why spasticity occurs is because the brain then... Or the area that may not be fully developed in the brain was probably an area that was required to relax a muscle when you're trying to do a certain movement.
Rachel:
So I think if we then think how with cerebral palsy and particularly with sort of that physical activity component, what then, are we thinking about... And Christopher, I don't know whether you'll be able to answer this but maybe Wendy, we can sort of talk to you a little bit about this as well. When we're thinking about the muscles and the bones you talked about, obviously, what's happening with the stretch reflex of the muscle, but what else is happening at the muscles when we're thinking about spasticity?
Wendy:
So we talked about the stretch reflex, and then I guess the other piece is that it can create pain and discomfort. I hope I'm answering that question appropriately. And so sometimes it can, actually, then... Specialty can lead to a certain level of tightness, which can also then impair overall muscle movement.
Rachel:
Yeah. Because I think that's important because when we are going to start talking about physical activity and exercise and fitness, obviously, what the muscles are doing really impacts the potentially on the activities that can be performed. Or they, also in the reverse, the activities that you can perform can actually change what's actually happening in the muscles. So I think it is really important that we start thinking about that. Other thing, obviously, to think about with the musculoskeletal system is obviously bones. And so when we're thinking about bone health and the changes there, what are some of the things that we would be looking at?
Wendy:
So it's kind of a two way street with spasticity. So spasticity sometimes, because it's then creating a stress and a pull on the bone versus lack of movement, can actually affect bone development, I guess you'd say. And so the lack of the pull and the lack of that stress on the bone in general, due to immobility and weakness can then lead to decrease in bone health.
Rachel:
Yeah. And I think, we'll go into that a little bit more later on. So Byron, now that we've sort of set the stage, I suppose. So thinking about, all right, cerebral palsy is affecting muscles, it is affecting bones. Can we start talking a little bit about the difference between exercise and physical activity and why they're both so important, because I think it's really important to define the two of those and distinguish what are the differences?
Byron:
Yeah. So getting straight to it, physical activity. So if you look in the textbooks and all the academic kind of papers, physical activity is just any bodily movement that requires energy expenditure. And so exercise is technically a part of physical activity, but in more lay kind of explanation, I like to see it on a continuum where physical activity is at the end here. And physical activity is more of those things you hear and see every day, like you see on TV, enjoyable sports, recreation, active video games. For me, that's what does it for me. It's the more enjoyable modes of exercise. Swimming could be there too. And then on this side, I like to put exercise where it's really more structured, meant to build up certain goals, to get you to the point where you're able to do those physical activities, those things you enjoy.
Byron:
So for example, maybe I can't swim yet because my aerobic capacity, my aerobic fitness isn't high enough level to be able to swim a couple laps yet. And so I need to do some exercise just on like a stationary cycle or a stationary arm bike to get to the point where I'm able to do that swimming, for example. So for me, I like to see exercise as a buildup to get to physical activity, and that could be those adapted sports and all those things we talk about. And within exercise, I would also classify exercise therapy or therapeutic exercise as well. I'll just add in the example, strength exercise used to be not advocated for, because it used to be believed that it would actually excite the stretch reflex. As in, it would make spasticity worse by worsening the stretch reflex.
Byron:
But now we actually know that's not the case. And so, strengthening exercise is safe and beneficial for people with CP. Can exercise help spasticity, right? That's question one. Question two is, how much should I do? And question three is, what should I do? Is probably what you are thinking, or you are thinking for your child or someone you know, right? And so I will get to the first one first, I guess. The first one is can exercise improve spasticity, as in, make it less spastic. And I don't have any studies off the... I did some research in this past week for this. I don't have any studies yet, clinical trials, that demonstrate that exercise training. And what I mean by that is like muscular strength, aerobic fitness, and all that, can actually improve the spasticity of the muscle.
Byron:
And so what I mean by that is it might not improve it now. Right. But like I said, it doesn't make it worse. And so, I don't want to say it doesn't help because I just don't think we're there yet. Honestly, the research is still in its infantile stage, we need much more research. But that being said, I think we should take that on a flip side where we can get all these benefits of exercise without making stretch reflex worse, or making the spasticity worse. So long story short, can exercise improve spasticity? We don't know yet, but... Or we don't have the optimal exercises and the techniques for it yet maybe, but we're trying to get there and just know that exercise won't hurt at least as far as we know at this moment.
Rachel:
But Wendy, from your point as a psychiatrist, how important is developing early exercise habits in childhood for children with cerebral palsy?
Wendy:
Oh, I think it's really essential, especially, in cerebral palsy because we're also... I think in a previous webinar talked about the aging process and in cerebral palsy, the immobility can lead to just speeding up that process. So starting young and developing those habits of incorporating exercise into daily life is really essential for strength building. It improves just how efficient a muscle and a nerve can contract, especially, in children. It makes each muscle contraction more efficient. There are physiologic findings where it improves, how well a nerve basically connects with the muscle essentially. And part of it is also that form of habit of being able to just incorporate that in daily life, because if you start you young, then it makes it easier to continue that as you get older.
Rachel:
And so that's sort of a great question that I have for you because you sort of talk about incorporating into daily life. And when I was definitely first in my training and first came out and I've got a background as a physical therapist we really tried to incorporate in every aspect of life. So say, for example, if a child was at school incorporating, "Okay, well, if you are walking to the bathroom, that's a great time to sort of put these things in place." But I think we also know now that fatigue is a really important thing that we need to manage as well. So thinking about, while incidental exercise and all these other components are really important that sometimes there's this management thing that we need to do, particularly with children, because children can also experience fatigue. So what are some recommendations that you have around that to either identify, okay, when potentially people are doing too much when they're not doing necessarily the right types of exercise?
Wendy:
So doing too much, I think that then we would probably look more at how well we recover afterwards and also how that fatigue impacts the other aspects of our life. We all know, we only have 24 hours a day and we also need to sleep too. So I think a lot of it also has to just... We do have to find that fine balance of how much is in your gas tank and how much do you actually have to be able to accomplish during your waking hours. And then, as far as doing too little, I think some of it could be also... In children, children like to move. So if you have someone, a child, that seems to be a little bit more wiggly and notice that increased movement helps them to sleep later at night, that might be a way to identify whether they're not getting enough movement either.
Rachel:
And when we are thinking about... I suppose, Byron, I'll ask you this question. When we're thinking about exercise guidelines, then. So when we're thinking about exercise guidelines across the lifespan and through childhood and adulthood, are there specific guidelines for children with cerebral palsy when it comes to exercise?
Byron:
Yes, there are and guidelines as a whole topic. Oh boy! So the simple answer is, there's guidelines for actually when you're a child and there's guidelines for when you're an adult. And the best... There's no best, but the ones that are generally accepted are the US National Guidelines. And that for adults would be 150 minutes of moderate intensity... Moderate or vigorous, moderate to vigorous intensity physical activity. And that's 150 minutes per week, sorry, of moderate to vigorous. Then for children, it's a little different. And so for children, it's 60 minutes per day, that's recommended of moderate to vigorous. And it's so interesting that they do that. And I believe the reason where that is what Dr. Pierce said, it's really about building that habit early to get to the point where they're sticking with it when they are adults and all these typical barriers come up, lack of time employment and all that kind of thing, whatever comes into play and you just don't have as much time to exercise. But yes, there are also guidelines that are specific towards cerebral palsy.
Byron:
And I have those pulled up because, oh boy, there's so many types of guidelines, right? And so this guideline is not necessarily child specific or adult specific, for now. And I'll get to a little bit of the fine points, but the guideline for cerebral palsy, specifically... And this is from a paper published in 2016 by some well respected researchers. Is a minimum of two to three times per week of essentially, moderate to vigorous activity of at least 20 minutes. So two to three times per week of 20 minutes of moderate to vigorous physical activity. And that's kind of really aerobic, but I'm just kind of generalizing. I think it's one time per week of strength, but that's a minimum. Okay. So it's two to three times per week, minimum 20 minutes. Now the honest answer with you is if you're asking how much you should do, it's really every day and the more, the better, and the reason why is really about the benefits.
Byron:
And so, I think, before we started talking, you were saying, "How do you choose a guideline? How do you choose a prescription?" And that's a tough question. I really think you got to consult like Dr. Pierce or your doctor because everyone has different goals. For me, I actually tested my blood recently and because I was doing it as part of a research study and I have high lipids. I am actually really high risk and I had no clue until I did the blood test. And so now my diet is different and I'm exercising more. I got like a Peloton cycle. And so my goal is improve my blood related health, cardiovascular fitness, cardiorespiratory fitness. So I have to do a lot of aerobic exercise, but kids with CP might have different goals. They might want to walk better, right? Strengthening exercise might help. So it really just depends on your goals, I would say, but many different guidelines.
Rachel:
I think you've brought up such a good though because, obviously, a lot of the time we think about physical goals, right? So we think about potentially, "Okay, am I walking faster? Am I able to walk longer?" But you bring up a really good point thinking about, "Well, actually, there's cardiovascular goals." As you said, you actually want to think about what your blood work looks like. Dr. Pierce can you sort of elaborate a little bit on how important that is and potentially when we are thinking about health and fitness goals, what sort of things do you look at measuring that potentially you can't see? So what blood work would be sort of recommended to potentially get and things like that?
Wendy:
So there's probably fewer guidelines than children. But here at children's Colorado we actually have an adult study looking at gait and adults with cerebral palsy. And they are looking at lipid panels and... I'm just trying to remember, that's probably the primary one, to be honest, lipid panels and different hormone panels. But it's very similar to those who are neurotypical. So that's one measure of that. The other piece is also in a way bone density is another measure. Again, this is probably more targeted to those who are adults versus in the pediatric population. For young children, probably because we try to avoid getting blood work on kids. But sometimes we can look at bone density, but that again needs to be really... You have to have a very close conversation with how... What that data looks like with your clinician, but otherwise, other measures would be just simple things like getting your weight and your height and understanding like... And that can be another measure that doesn't require a poke.
Rachel:
Right. No, and I think it's really important because we are looking at health and physical activity and sort of thinking about all these different things that we are looking at, trying to improve and why it's important, obviously cardiovascular fitness and what's happening on the inside is just as important sometimes as our physical goals as well. So it's really important to start creating those healthy habits at a young age. Now want to sort of get into a little bit of the types of exercise and some of the fun stuff that we can do, obviously. And please anyone who's watching put some questions in the chat Byron and Wendy here are really here to answer any of those. But Wendy, we know the Paralympic games are happening right now, which is pretty exciting. And I hope a lot of our viewers are actually watching them because there is some extraordinary athletes. And obviously athletes with cerebral palsy who are competing.
Wendy:
Mm-hmm (affirmative). Yeah.
Rachel:
And since you're based in Colorado, I know that you're very familiar with the sort of winter adaptive sports. Can you sort of share a little bit of some of the stuff that could be happening during winter adaptive sports and what they look like for people with cerebral palsy?
Wendy:
Oh, so I told, as we were prepping, that you're going to have to cut me off because there's so much. And to put a plug in, I also am a Co-Medical Director of our adaptive ski program at Children's. So in cerebral palsy, a lot of it depends... As far as different options, some of it will depend on walking status. So there are folks with cerebral palsy who are able to stand up ski. And actually there's a member of our former ski program who does have cerebral palsy, who's snowboarding. So that's an always another level of activity. Ski biking is actually another way to... If you have some limited standing endurance, ski biking is also another great way to barrel down a mountain quickly.
Rachel:
Mm-hmm (affirmative).
Wendy:
And then the next level for folks who tend to have weaker lower extremities and trunks as well, would be sit skiing. I guess there's been some new technology with sit skiing that actually, folks who have less trunk control. And right now, there is a new sit ski out that is almost power controlled. I haven't seen it yet, but I know it's out there.
Rachel:
Oh, wow. That sounds amazing. It's something that I've definitely done a lot of as well. And thinking about the adaptive sports and the [adaptive 00:23:29] sports programs that are available, I think is really important when we're thinking about going, "Okay..." Byron, you said 60 minutes a day, that's a fair bit when we're thinking about what that looks like. And when we're saying 60 minutes is that 60 minutes of structured exercise as well? Is that kind of what the guidelines are recommending?
Byron:
60 minutes of moderate to vigorous intensity. So that's like, if you had to put a 10 you're dead tired and a one were resting, like now. You'd have to be at least a seven, like tired, and that's not easy to do. When I cycle, I do 20 minutes. It's hard. And so, I don't want people to get discouraged by guidelines, start small, build up. And so I would start with the minimum, which is that two to three weeks, 20 minutes. Build up to, honestly, as much as you can do every day without causing detrimental effects, like pain and fatigue, like we were talking about earlier.
Rachel:
And so what are some of the other ones? We've spoken about sort of obviously adaptive skiing and winter sports, but what are some of the other ones when we're sort of thinking about general adaptive sports and things to play?
Byron:
Gosh, I'm an adapted exercise professional, I guess, whatever you want to call it. The honest answer is we can adapt anything for any level of function. And just like Dr. Pierce was saying there's now these skis that are totally powered. And so honestly, every sport, there's adapted wheelchair, adapted rugby. Those are the bigger, more sanctioned sports that are not winter, obviously. Adapted swimming, there's, there's all sorts, you name it. Adapted baseball... I don't think it's called baseball, it's got another term. But you name the sport, it's there. Finding it is the hard part, right? Because transportation is an issue for everyone.
Byron:
And with this whole cover at 19 pandemic, unfortunately a lot of these opportunities have closed down temporarily or sometimes permanently. So finding them is honestly the harder challenge, but there are ways to do that. I think it's okay if I mentioned NCHPAD, the National Center for Health Physical Activity and Disability, nchpad.org. It's a totally free website and their job is to actually help you find local resources in your area. It's just a national center funded by the CDC. And so finding it is honestly harder, but there are plenty of adapted sports out there.
Rachel:
Yeah. And I think it's such good advice though. Absolutely NCHPAD, obviously, an incredible resource for those who can also go to cpresource.org, we've got some summaries for you as well. But I think the thing is actually asking, because sometimes you may not even be aware that these things are actually available to you, but it never hurts to ask. And sometimes by asking it also gets people to go, "Oh, well, why don't we have that on offer? This is sort something that we should do." Now, we're getting some questions in that I just want to sort of pass by both of you as well. And Wendy, I'll ask you this question, it's coming about getting a bone scan. So if we are sort of thinking about bone health, what are the options for people to try to measure that?
Wendy:
So there can be... So again, something that you probably need to discuss with your primary care provider for the interpretation, but there are DEXA scans that can be done. A lot easier to find in the adult world versus in the pediatric world. And in the pediatric world, it requires some very open discussions with your provider, as far as what the interpretation is because in children, it isn't as straightforward as it is in adults.
Rachel:
Okay. But these are available, if it's something that was required and definitely something to ask your physicians and doctors about. We've got another question that's come in and I'll ask you another one on top of this. But the next question is, if there's somebody who is overweight and has difficulty with fast exercises. So I think they're sort of getting to that moderate and vigorous exercise, where can they start? What are some recommendations that you might have?
Byron:
That is a good question. Let's start with the upside, light intensity activity is still good, okay, don't get me wrong here. And that's why guidelines are guidelines, take them... Yes, you should maybe memorize them, but take them with a grain of salt, any kind of activity is good, even if it's light intensity. So honestly, mostly exercise I do these days is light intensity. I do a lot of active video gaming and that would technically be considered light, but I do a lot of it. So the answer is where you should start is if you... I don't want to say can only do it, but if you're starting with light intensity activity, do a longer duration, so that you're getting the... I don't want to say the same benefit, but you're trying to equivalate what kind of benefit you would be getting out of moderate to vigorous from doing light.
Byron:
But that probably means you're going to have to do a lot, lot more of it, right, to make up for that difference in intensity. Body weight is a very difficult one, and I remember we were talking about earlier how much exercise you should do really depends on your goals. Body weight is the hardest thing to lose. I mean, it's the hardest thing to lose because you really have to do a lot of activity to really make those kind of changes, but that shouldn't be discouraging. Start light, just keep building up. And if you can only do light, that's a-okay. As long as you're staying active. Rachel mentioned earlier, yes, guidelines say moderate to vigorous, but really staying active in general is really important. And there are different camps of researchers who say, "Oh, you have to worry about moderate to vigorous. You can worry about light." And there's others that say the opposite. Just do what you can do and do as much as you can do and keep pushing yourself to do more. I would say is the best advice you can get.
Rachel:
And I think as well speaking with your physician and your doctor, because obviously exercise is one part, if we're thinking about weight loss or body weight. But also your diet and nutrition plays a really big role into that. So it's always... And medication can play a role as well. So it's really important to talk to your doctors and workout what's going to be best for you in that regards. So Byron, you touched on it a little bit, so there's some remote options for people with cerebral palsy and disabilities for exercise and getting physically active. You mentioned you are a big gamer, so active gaming. But what are some of the other sort of remote options that might be out there for people with CP or disabilities?
Byron:
Yeah, there is a lot nowadays. So if there's anything good that came out of COVID 19 for this area, at least, it's that a lot of the onsite opportunities, a lot of those adapted kind of sports are now trying to bring something to the internet world. Okay. And so what that means is... I'm not supposed to mention specific organization, all that kind of stuff, but there's plenty more opportunities out there for remote internet based exercise programs. I'll just name some examples, not specifics. But like one site I looked at, before they would do like adapted baseball or whiffle ball, whatever you want to call it. Then they actually transition what they would tee onsite into these video based step-by-step learning programs that were accessible for free for the public. So it that's not even our place, it was just something I saw randomly.
Byron:
That's just one example. There's video conference group internet exercises, where you can get with a coach, you can do one-on-one, or you can do it with other people. Telehealth has really burgeoned from this pandemic. And with that, there are more kind of online opportunities for those who can't find things around them locally. So many types. Yes, there's video gaming. There's actually sometimes adapted sports, they're adapted for online, like I mentioned, which is really cool. And then there's of course the typical, like you have exercise training videos, you can get one-on-one coaching via telehealth, group coaching and all that kind of stuff. Plenty of opportunities out there if you know where to look. And that is not the easiest thing to do.
Rachel:
So that actually leads to our next question that has just come in and I'll ask both of you this question, because you may actually both have slightly different answers. Where does someone go to find a health professional who has expertise in cerebral palsy and exercise in fitness? Is NCHPAD a resource that people can go to, Byron? Or what questions should they be asking, say whether it be a PT or a health professional, to make sure of getting that expertise that they need?
Byron:
You want to go first, Dr. Pierce?
Wendy:
Sure. So as far as where to go to find someone, to be honest, I would probably start with going to the CP resource and there's links to finding providers through the American Academy of Cerebral Palsy and Developmental Medicine. That's my source when I'm looking as well, for example, when I have patients that move out of state. So that would be probably where I would first start. If you're in a city that does have access or where there is a physiatrist or a physical med rehabilitation physician within that specialty, I think, that or sports medicine might be another place to look if you're trying to find a specific field. Folks in the physical med rehabilitation are part of our training, even if we're more sports based, we do work with adults and children of all different levels of ability. And so they might be able to provide some of that or apply some of that to someone who has cerebral palsy.
Byron:
Yeah. I can-
Rachel:
No, I think that's great advice. Yeah, Byron.
Byron:
Yeah, I can totally agree. My colleagues are physical medicine rehabilitation doctors. Yeah. That would be a great place to start, definitely. And there are those that are physical medicine rehabilitation and sports medicine, if you hit that's like gold. Not easy to find, but it's great when you find it. And then I think organizations like what we're doing right here, is really good. I mean, if you probably just emailed Rachel... I don't want you to spam or email, but if email the organization and then say, "Hey, where can I find something locally for me?" If they don't have the answer, they'll know where to look, right? And so I would talk with organizations local, as in maybe local facilities near you, as well as your doctor. Yes, there is NCHPAD, nchpad.org. They have text chat people. You can just text, "Find something near me." That is their job to find things locally for you. National US, mind you. So yes, I would say organizations are also a good resource.
Rachel:
And we've got a lot more questions actually coming in. So we're going to try and get to as many of them as possible. This is a good question. So this is, what would be a moderate workout that a two year old with spastic quadriplegic CP can do. So we are thinking about... And I think it's a great question Byron, Wendy, any thoughts on this one?
Byron:
I'll let Wendy go.
Wendy:
I'm just thinking. A moderate exercise that they can do. I was going to start with see how much exertion that they're already doing with their physical therapist, because that's probably a good start in terms of determining what their endurance is. Two year olds are tough because they're also somewhat smaller in size.
Rachel:
Mm-hmm (affirmative).
Wendy:
And trying to encourage that level. But I think looking at, probably, different forms of play and exposure at that age is probably, more what we're looking for because they're still developing their skills.
Byron:
Yeah. That's tough.
Rachel:
[crosstalk 00:36:42] Yeah.
Byron:
Oh.
Rachel:
Yeah. Definitely. As part of, I suppose, our sort of early intervention programs that we do as part of our early detection network, a lot of the times we are thinking about, really play based activities. So if you're wanting to sort of think about more moderate and more probably strenuous activities, we would probably bring music into the situation, right? With music, you can start thinking about moving to a beat and that beat then helps you move potentially faster or slower. And even a two year old would have, obviously the response to that music would really help at actually elevate, potentially, what they were doing. I think a two year old, you're probably looking at wonderful, different floor activities and really thinking about engagement. But I would focus on music. I think music is a wonderful way to really get children involved in activities. And yeah, it allows to sort of bring it for sure. Now the next question is sort of going to the other sort of end, has anyone studied the benefits of yoga? Byron, what's the literature looking like when it comes to yoga and even mindfulness
Byron:
For cerebral palsy, I didn't prepare for that question specifically today. I know there are at least a couple interventions like research programs that have done it. I don't want to say anything that's not accurate. So I can't tell you the specific benefits from it, specifically, for CP, mind you, but yoga definitely has a big pool of research for just in general population, not just kids with CP. So yoga is very evidence based in the sense that there's a lot of research studies for it. I would just be a little cautious because there's so many different forms of it. And you just don't... When it's that big naturally there will be. It's hard to say, specifically, but it really will depend on what kind of yoga you do and how much you do of it. But generally a mindfulness is a big thing to get out of it, absolutely. I mean, many benefits.
Rachel:
And I think you're spot on there with thinking about, "Well, what are your personal goals?" And obviously if yoga is an exercise that you enjoy doing, well, then that's sort of half of the way there as well, when we are thinking about creating these new habits and creating new sort of new exercise pieces. So the next question that's come in-
Byron:
[crosstalk 00:39:15] Maybe I can tag on that. I think the question is being asked because of all this talk about moderate and vigorous. And I guess if you're trying to ask, can you do yoga and get all these same benefits like we're trying to tell you today? Yes. I would say, some, not all. But yes, because for example, there are... I know yoga classes. I couldn't tell you the name of it, I forgot. That are really intense aerobically. There are different kinds. And so if you're trying to say, "Can you get those benefits from yoga?" I would say, "It's possible."
Rachel:
Yeah. No, thanks Byron. So we've sort of getting quite a lot of questions about personal trainers. So we've spoken about potential physiotherapists, obviously, adaptive exercise specialists like yourself, Byron. What about personal trainers? What are some things that people should look for? They're saying that they're finding it hard to find experience personal trainers. What can we look for with personal trainers that might be helpful for those out there?
Byron:
Yeah. There are actually certifications for that, but it's not so widespread that you could probably just walk to any gym and find one. I know it's getting a little bit more widespread, but not to that point yet. I'm going to say again, NCHPAD can help you find those adapted exercise specialists, but it's not easy, honestly. But having said that, I know there are adapted exercise trainers out there who would do like what we are all doing right now, video conference guided exercise for you or your child. So I know that exists and I'm probably even have numbers of people who would do it, but I'm saying it's out there. It might not be the easiest to find, but it's certainly out there. I would start with asking organizations like Cerebral Palsy Foundation and other organizations for help with that, if you are having problems finding someone. They're there.
Rachel:
No. And I think it's important to say that there are certifications for this, so you can also ask. It's not a bad thing to say, "Actually, are you certified in this? Is this something that have been trained in or is this just something that you're interested in?" Because I think there are big differences and trying to find that person that is certified would probably go a long way for a lot of people. We've just had... I suppose this is more of a comment back to that from two year old, you know what to do. Great suggestion thinking around water activities and hydrotherapy and those sorts of things too.
Rachel:
For a two year old, maybe a little bit small, but also thinking of horse riding. There's wonderful activities that you can really think about for two and three year olds to do. Now, we've sort of got another question that's more about strength training. Because I know we sort of touched on it a little bit before, thinking about strength training doesn't increase spasticity. But what about strength training and particularly for children, should they be getting into the gym and doing strength training? What's the evidence and the literature saying?
Wendy:
So I'll interject there. There actually is evidence and literature talking about how it's safe and beneficial for children with cerebral palsy. There was a review article that was published, and I can't... It might have been the same one that Byron you've referenced, but talking about randomized trials, looking at strength training in children with various GMFC or very functional statuses, both ambulatory and non-ambulatory. Demonstrating that, first of all, it is safe. And secondly, that it does demonstrate improvement of overall muscle strength. And I hope that answers you question.
Rachel:
[crosstalk 00:43:17] No, I think it's important. I think the safety piece of that is important, right. That actually doing strength training does improve things and it is safe and can be actually done with children.
Wendy:
Yes.
Byron:
Yeah.
Rachel:
Byron, have you seen any great examples of how to make strength training seem a bit more fun than potentially going to the gym and lifting weights?
Byron:
Oh boy. I mean, I prefer physical activity over exercise too. Right. And so, man, you have to find a good trainer, honestly, who can make these things fun. It's kind of hard to say certain things, I don't want to get into specific exercise but I would just find a trainer who makes things fun. I think one question was what kind of trainer should I look for? Well, I have great news, just like Dr. Pierce was saying. I've seen almost... I don't want to say all the literature, but quite a lot of literature on exercise and cerebral palsy. I have not seen one adverse event. And what I mean by that is like a serious injury or a fatality from doing exercise in some way in these published research studies, mind you.
Byron:
So what I'm trying to tell you is that in that trainer, you look for, if your child is ambulatory and can do, like for example, a lot of the exercises at the gym. Then you don't need maybe a certified trainer, if you don't have a lot of second day conditions like pain and all that to worry about. But exercise is generally really safe and if you're going to get anything out of today, that is definitely something to get. But to make it fun, I think you got to just find that trainer who is going to help you make it fun. I don't want to say specific exercises.
Rachel:
Yeah. No, no, totally. This is a sort of a question sort of in relation a little bit to thinking that strength training doesn't increase spasticity. That this is one, is spasticity after exercise a thing or is it likely to be something else? So this is maybe going, okay, after exercise, maybe after fatigue, muscles feeling tighter, muscles feeling sore. What do we know about that? Obviously it doesn't increase spasticity long term, but is there something that it does actually lead to more spasticity in the moment or is it likely something else, potentially muscle soreness or just the other effects of exercise.
Byron:
I don't want to say it's not there, but if someone goes through a 12 week program of constant training and the spasticity doesn't get worse, I think we don't have to worry about it so much. Maybe even the opposite. So there's a new kind of training that came out. It's eccentric. That's not new, but it was like backwards treadmill walking or something like that, where they're focused more on eccentric movement... I know, a little jargon. But eccentric movement. And they actually found that there were actually beneficial changes, acute mind you, like it was just right after they did exercise. The spasticity got a little better as detected by sonography. So I don't want to say it might make it worse because these training programs really don't look like they are making it worse. So if there are acute changes, it doesn't seem to be last long enough to make a difference over the whole program, is what I'm trying to say.
Rachel:
And so I suppose when, Dr. Pierce, if there are acute changes, it might not be spasticity. What recommendations on what someone should do? Should they actually just talk to their doctor and physician about it and just, because it could be something else.
Wendy:
Right. And I think, it'd be worth talking to their physician and also seeing how long it lasts for, too. So that's probably, the other piece that you just want to pay attention to. Because if it lasts for a short period of time, then I would argue that's not something to worry too much.
Byron:
Yeah. Maybe I should... Saying it doesn't really affect. So if you do general... Not cerebral palsy specific, but general strength training, if you do a whole load of that, you're just naturally going to lose a little bit of flexibility, right? So you do stretching exercises generally to try and counter that. I mean that kind of thing might exist, but overall we're not seeing increase in spasticity. Right. So I did see one study, on positive note where aquatic exercise, is really therapy because it was one-on-one, but aquatic exercise did actually improve spasticity and it was detected by sonography. So that's better than just a questionnaire. So I don't want to say that it's not possible to improve spasticity from exercise because we're just not there yet. That was a really new study. And so I think Dr. Modlesky who was going to be here today, one message he wanted to get this whole audience today is that we're really trying to still discover the best ways to improve spasticity as well as just other health outcomes from exercise research.
Byron:
But we actually are having a difficult time recruiting people to be part of these exercise trials that help contribute to this knowledge. So, if you get anything out of today, if you can help us in these kind of exercise programs to help contribute to this research, that is the largest problem with the research. The average number of people who are in research studies are about 30, three, zero. In the adult population, just general population, it's like 2000. Okay. So we're having like a really hard time recruiting people. So if you want to help anywhere and help contribute this knowledge, getting involved in these studies, it would be a great way to start. And if you're getting involved in these exercise trials, they might even be more beneficial than the stuff you might see conventionally in the community because we're trying to test new innovative things, if that helps sell it.
Rachel:
Yeah. No, Byron, I think it's, actually, a great recommendation. People going, "Where do I find these different pieces?" Well, actually clinical trials are a really great place to start. Because as you said, a lot of them are using the best evidence, latest cutting edge technologies, if that's part of it and really set up to look at the benefits of what's happening here. So we actually do have, on cerebralpalsyresource.org, a clinical and research trials page, which has all the latest ones that are recruiting. So please go have a look at that because you might find things that are really not only just in your area, but something that you think that you'd be really interested in. Now we've got two more questions. We've actually got quite a lot more, but I think we've got time for about two more. So this one's just looking at botulinum toxin injection and exercise and additional therapy after those, is that helpful? Thinking about what happens what's happening at the muscle, should they be combined together? Dr. Pierce, do you want to have a go at that one?
Wendy:
Yeah. So I was looking at the literature for that and there isn't really a lot of literature on exercise after botulinum toxin injections. There's discussion about the benefit of therapy afterwards because you're relaxing a muscle to be able to achieve a goal to move. There is some literature on muscle stimulation that may help increase botulinum toxin effect. But the general recommendation is that it definitely is not harmful and can be helpful afterwards to basically also maximize the effect of the relaxation of the opposing muscle that the botulinum toxin was geared towards.
Rachel:
So I think for, for those asking, yeah. Really, it probably is something that you want to look at after any sort of intervention like really thinking about, what are your goals? And pulling that with an exercise program, pulling that with those different things, because hopefully, actually, the injections or the intervention will allow you to potentially do more or you can get more benefits from it. Last question... Well, there's one comment that people want to make and it's really looking at the benefits of martial arts. And so I know we spoke about some winter activities and obviously martial arts is also a Paralympic sport. So absolutely martial arts for people with cerebral palsy, there's some wonderful adaptive programs. It is a Paralympic sport. So definitely something for people to look into at their local area. But let's just go back to the cold weather for a moment because, Wendy, obviously, you are in Colorado. So how can people with cerebral palsy manage their spasticity better in cold weather, if they're trying to exercise outside?
Wendy:
That is a good one.
Rachel:
[crosstalk 00:52:10] Warm clothes, I suppose. But-
Wendy:
[crosstalk 00:52:12] Yeah.
Rachel:
That is, actually a real thing. We hear a lot of people move to warmer climates because, obviously, of the discomfort the cold weather causes. But what do you see, say when you're doing your adaptive sports, when you're on the mountain, what are some of the best tricks of the trade that you've seen?
Wendy:
Tricks of the trade would probably be portable hand warmers. So you can buy disposable hand warmers that you can put in different areas. You just have to be very careful if you have limited sensation, of course, to make sure that it doesn't... And also to make sure it doesn't create pressure sores in unwanted areas. And then probably, we were talking about continued exercise, but breaks probably. Like breaks where you are able to go somewhere to warm up. And layers. And yeah, layers is probably what I would say.
Rachel:
I know. It's one of those wonderful conundrums. I think that a lot of us experience who love being outdoors and skiing and being in the snow. But yeah, that cold weather can sometimes put a dampener on a lot of things. So, wonderful advice. I just want to say a big thank you to both of you, obviously for spending so much time dealing with the technical difficulties and been such good sports in everything. Oh my gosh. There is one more question. Okay, last one. I promise. And I'll ask both of you. So what is the best general advice to increase exercise levels and activity? Closing remarks.
Byron:
Best general, just ending in comment?
Rachel:
Yeah.
Byron:
Start small and build up from there. So there's actual behavioral theory research. There's actual people who spend their life researching theory to try and make people stick to a behavior better. And that's behavioral theory [research 00:54:23], behavioral research. When you start small and you successfully achieve these small goals you have for exercise, for example. You set a small goal and you're hitting it and you're hitting and you're hitting it. You feel good about it. You feel confident about it, makes you more likely to do it in the long run, self-efficacy or self-confidence. And that's the biggest construct that goes across almost all the theories. So I would say biggest advice is set small, small goals that you will achieve, hit those. And when you feel like it's getting easy, then up it. Don't just set yourself on this huge goal. You have this pride or something and then you don't hit it and then you're discouraged and then you just don't do it anymore. I have the same issues, small goals.
Rachel:
That's wonderful advice. Wendy.
Wendy:
My other piece of advice I was thinking through is, make sure it's on your calendar. So setting those goals, but also putting it on your calendar as a reminder, because I personally, only need that to remind myself of what I need to do from one minute to the next. So.
Rachel:
Yeah. No, I think that... And it makes you feel like you're accountable, right. When you can see it, that it was sort of put in place and it's that calendar, it allows for that accountability. And I suppose my biggest thing that I've heard from both of you is find things that you enjoy. It appears that really, when we're thinking about exercise, thinking about physical fitness, whether it be that you're trying to do that moderate and vigorous exercise, enjoyment and having fun is really an important part of all of this to maintain, obviously, doing it for longer. So yeah, really try and find those sports that you enjoy and there's a wonderful things to do it. But so yeah, just wanted to thank you both, obviously, for joining us. For those who are watching, I will absolutely try to have another conversation with Dr. Christopher Modlesky and we'll make sure that's attached to this because he obviously has such wonderful things to talk about when it comes to research and everything with muscles. So we will make sure that happens at another point and post it live for all of you.
Byron:
Thank you for having us.
Rachel:
[crosstalk 00:56:36] Thank you so much.
Wendy:
Thank you.
Rachel:
Wonderful. Thank you. Okay. Well, thank you so much for everybody who has joined us this evening. And I would also just like to thank Ipsen Biopharmaceuticals, who is the sponsor of our New Horizon Town Hall series, and really makes it possible that we can and deliver these to you. And we really look forward to future Town Halls. So please, make sure you follow us on Instagram, Facebook to keep up to date. And of course this month is National Cerebral Palsy Awareness Month. So make sure you go to gogreenforcp.org and on March 25th, wear green and bring awareness to cerebral palsy. Thank you so much, everyone. And we look forward to seeing you again soon.
Rachel:
(Silence). Hi, and welcome everybody. My name's Rachel Byrne, I'm the Executive Director of the Cerebral Palsy Foundation, and I'm really excited for today's CPF Live with Chris Modlesky. Chris is the current Chair, actually, the Research Chair of the American Academy for Cerebral Palsy and Developmental Medicine. He is also a University of Georgia Athletic Association Professor of Kinesiology and the Co-Director of UGA's Pediatric Exercise and Motor Development Clinic. Dr. Modlesky has been studying disability with a special emphasis on children with cerebral palsy for nearly 25 years. And one of his primary areas of research is in the assessment of musculoskeletal systems using different imaging modalities. And then also he has a focus on determining the effect of different treatments on the musculoskeletal system and physical activity of children with cerebral palsy. So welcome Chris.
Chris:
Thank you, Rachel, for having me.
Rachel:
Of course. Of course. So for those of you who saw the Town Hall the other night, we had a little bit of a technical difficulty, so we really wanted to give our community opportunity to ask Dr. Modlesky some questions and also talk about some of the topics around exercise and physical activity. So we'll sort of get started and please make sure you put your questions in the comment box. We'd also love to know where all of you are tuning in from, so please say hello. But to get started, from your research perspective, can you share how muscles and bones are affected by cerebral palsy?
Chris:
Oh, sure. So it depends on the level and the degree of involvement of cerebral palsy and how active the children and adults are. So the muscles tend to be smaller. They tend to be, the quality is not as good, tends to be infiltrated with fat and collagen. Also the belly of the muscle tends to be shorter, so the belly of the muscle, that's the part that contracts. So overall muscle's smaller, the quality's not as good, shorter, thinner. Also, there are some studies suggesting that the architecture is not optimal. It's not as you would see a typical muscle, but that may be dependent on the muscle and how that's affected. And really the studies are... We need to do more studies to look at that more closely and-
Rachel:
[crosstalk 01:01:28] And why is it so important to understand, I suppose, what is happening at the muscle level? Because obviously, we know that there's lots of different types of cerebral palsy and whether someone has spasticity or dystonia or ataxia or hypotonia, but why is it important to know what's going on in the muscle?
Chris:
Well, the muscle is what allows the person to move. So in order for you to move around your muscle needs to be able to contract and contract well. And the bigger the muscle it is, and the higher the quality of the muscle and the better the architectural arrangement of the muscle, the stronger the forces that it will generate. And the more things that someone can do, it's also a reservoir for protein. So protein, it's a metabolic fuel, not a major metabolic fuel, but it is. But also it's important for other tissues in the body. So like your blood cells, your vessel... Yeah, your blood cells, your vessels, your lungs, your heart, there's protein in all those different tissues. And then also if you have strong muscles that are working well, then you move more and you expend more energy. So that's important for reducing your risk for chronic diseases like cardiovascular disease and diabetes.
Rachel:
Yeah. I think that's such an important connection when we're thinking about musculoskeletal health it really impacts every other component that we have when we're thinking about our health, as you said cardiovascular disease, diabetes, respiratory health, all those other pieces. Now, if we think about the bone what's going on at the bone sort of level for cerebral palsy, is it the same sort of outcomes as what we see in the muscle? Like for example increase body deposits, or is it different?
Chris:
Well, the muscle and the bone are very connected. So the muscles, many of them attach to bones. So in some ways they'll mirror what the other is doing. So like I'd mentioned, smaller muscles, the quality of the muscle is not as good. The architectural properties, depending on the muscle, maybe compromised or not as you would expect. And the same with bones. So bones tend to be smaller, thinner, and the fat within the bone or the marrow within the bone tends to have a higher concentration of fat. So from a chronic disease standpoint, that's not good. If you have more fat within your bone, that's an indicator that you're at a higher risk for diabetes.
Chris:
Also, if you have a lot of fat in your bone, then that's... You have cells in the marrow and they can go in different directions so they can become bone cells, or they can become fat cells. And if you're doing things, loading the bone and doing things that you would expect someone to... Or would want to do, from an activity standpoint, then they're more likely to become bone cells and be stronger and have thicker shells. But if you're not, then you're going to tend to have more fat within the bone and then have higher risk for different chronic diseases. Also the structure of the bone. So, if you look at like a long bone has marrow in the middle, and then it has walls or a shell, and that keeps the bone strong and it provides support, so if you want to move around.
Chris:
And if you're not loading the bone, like a lot of people with the cerebral palsy, then the walls aren't as thick, and it's a weaker bone, and it's more so susceptible to fracture. And then also on the ends, you have spongy bone, which it's a lot more porous, but there's like a network of bone. And that is in people with cerebral palsy, tends to be a lot less connected, thinner structures and more susceptible to fracture.
Rachel:
You just use the term loading the bone. Can you just explain a little bit what you mean by that?
Chris:
Mm-hmm (affirmative). Well, loading the bone means creating forces on the bone that trigger cells within the bone to make more bone. So loading the bone, examples would be, just standing. Standing, you're loading the bone. Contracting the muscle, you're loading the bone. So loading means you're putting stress on the bone, and then it causes a strain. So the bone sees this stress and depending on the level of stress and the stress of the bone will dictate how much strain there is on a bone. So if it's a weak bone and it's a thin bone, a small bone, and you put the same level of stress that you put on a bone that's stronger and bigger, the strain on that bone will be greater and the risks for fracture is greater.
Rachel:
And I think it's really important when we know thinking about obviously bone health, thinking about the consequences of some of these different things. And I know research has sort of really focused on potentially how do we look at improving the quality of muscle and the quality of bone.
Chris:
Mm-hmm (affirmative).
Rachel:
Has research shown anything that this changes as you age for people with cerebral palsy?
Chris:
Well-
Rachel:
Or do we not know yet? I think, we can obviously, go into a fair bit of, "What do we know? What is the research showing us?" But-
Chris:
Sure.
Rachel:
Do we have things to sort of say, "Okay, as we age, it does actually deteriorate." We know cerebral palsy is the brain injury, obviously, or what's happening in the brain doesn't necessarily deteriorate and get worse. But what do we know about muscle and bone? Are we seeing changes in that as people age?
Chris:
Well, I wish we could do more studies to determine what's going on with the muscle and bone as people age. There's not a lot. Just in research in adults with cerebral palsy, there's not a lot. And I think whether or not it gets worse or it gets better. I think it really depends on what the person is doing, the kind of care that they have, whether or not they're participating in activities that would promote muscle and bone growth and health and developments, and so that would be loading. But also dietary so that you need dietary support, so taking in enough minerals and taking in enough good proteins and coupling that with activity. So if you have someone who's doing things that you would want them to do, as far as physical activity and having a good diet, then they're more likely to have good bone and muscle growth and development.
Chris:
And also if they maintain that during adulthood, then they're more likely to have better bone and muscle health. But if there are, say surgeries or injuries, those are times when you become vulnerable to losing muscle and losing bone. And when those things happen, do you get back to what you were doing before? And if you don't, then that could lead to loss in muscle and bone, but as far as what the bones and muscles look like in adults and in older folks with cerebral palsy, we really need to do a lot more research. I'm sure if you talk to clinicians, they would have a better sense. But we actually don't have a lot of tremendous number of physicians who treat exclusively adults who have cerebral palsy.
Rachel:
Yeah. No, it's definitely a gap in the research and something that, as a foundation, we're absolutely prioritizing. Going, "Okay, not only can we look at say clinical care guidelines for adults, but what are the gaps in the literature?" We really, as you said, don't know what is happening to muscle and bone. We don't know then potentially what are the best interventions and recommendations. But I do love how you brought up nutrition, because I think we talk obviously with cerebral palsy, it being a physical disability, we talk a lot about movement and muscles and bone and mobility and all those different things. But when we think about long term outcomes of health, so cardiovascular health and all those other important pieces, nutrition plays such a pivotal role.
Chris:
That's right, it does. Yeah.
Rachel:
And we'll get into your research now, has there been things sort of shown that go, "Okay, in..." Adding with the research to go, "All right, this is what we are doing from a physical perspective." Do any of the research studies currently add nutrition as a component of those studies as well, to try to as you said, add in protein, add in those different things, or is that also something that we really sort of need to study in the future?
Chris:
Well, I'm not sure. I'm not sure what... I've been away from the nutritional part of research, but what I know is that nutrition can be hard to monitor. So if I wanted to know what your diet looked like, and what kind of changes you need to make, some of the standard protocols for that would be to have you fill out a diet record.
Rachel:
Yeah.
Chris:
Or diet records and try to evaluate those. But oftentimes people don't do a very good job of that. So it doesn't always reflect very well what a person eats. And also if it's in a short period of time, there are fluctuations in diet, so it's hard to capture that. But there are definitely studies that could be done with nutrition and couple those, especially, with physical activity and exercise, that would have a lot of promise and help create some better guidelines for people in nutrition.
Rachel:
No, I think it's such an important part as anyone who's listening, to think about if you're starting a new physical activity routine or doing all those different things, you should also talk to your doctor about your nutrition. And go, "Okay, does it match up to what you're trying to achieve?" Whether it be to improve, as I said, cardiovascular health, whether it's for weight loss, whether it be any of those different things. Obviously, it's a really important piece for them to discuss with their doctor.
Chris:
Sure.
Rachel:
But before we go on to what's next in research and even the current research project that you've got going on, what type of exercise and physical activity do you recommend as particularly helpful when we're thinking about obviously muscle and bone, which in turn helps with chronic disease and cardiovascular fitness?
Chris:
Well, I think it depends on the person and what they can do, but anything that would create interaction between the muscle and the bone would be good. So any type of physical activity, especially, when you're up and moving around, if you can do that. If you're able to [angulate 01:14:48], then that's going to provide the most loading on the bone. And if you spend most of your time in a wheelchair, then I would try to get up as much as I can and try to stand, like standing itself is loading the bone and the less support you have, the more your muscles work, the better.
Rachel:
Mm-hmm (affirmative).
Chris:
And then if you're able to move around, then you can walk and run, the more of those things the better. And if you have activities that you like to do. So if you want to go out and play some kind of game, then that's great. Anything where you're running and walking, running. But also if you had a structured exercise program, so exercise is physical activity, but it's a structured form of physical activity. And during those structured activity or exercise, I would do things where you're putting more stress or more strain on the bones and the muscles. So trying to do things where you're moving weights or moving your body. And if you can move weights, then that would be good. So like a certain percentage maybe of your body weight. Anything that would involve resistance.
Chris:
And I think there are studies showing that it's not just like strength training, but also like power training. So power training where you're not just moving the joints, but you're trying to do it in a more... Like jumping, is a power type of activity. And not only would it have an effect on your muscles and your bones, but also a lot of activities involve jumping. And I know a lot of people who have cerebral palsy, they have a very difficult time that. Even if they have a milder form, but if you can do it or work toward something like that, and you get stronger and better then your daily life, the things that you do will be easier.
Rachel:
Yeah. I think it's sort of this sort of really fine balance, right. To go, "Okay. How do you find..." As you said, "Exercises, which are a very structured program to help improve strength, improve endurance, improve all those different things. So you can then go participate in the things that you love to do."
Chris:
Mm-hmm (affirmative).
Rachel:
And so, I think that sort of thing, you sort of see these shifts happening where potentially... Actually, as a therapist, when I first went in, we really focused on going, "Okay, let's fit in exercise wherever you can during the day." So it was like, "All right, if you're a student and you're going to the bathroom, then you should use your walker to walk to the bathroom." And things like that. And then we found that by the end of that day, students were kind of exhausted and they couldn't then do a structured exercise program because they'd been trying to do all these other things throughout the day.
Chris:
[crosstalk 01:17:58] True, yeah.
Rachel:
[crosstalk 01:17:59] But I think what we're sort of seeing now is actually, sometimes these structured exercise programs that actually do focus on strength. As you said, do focus on loading and power and all those different things may give sort of more benefits in the long run.
Chris:
Mm-hmm (affirmative).
Rachel:
And allow then you to participate in all the things that you love. So I think it's definitely watched this space when it comes to exercise prescription, particularly for CP. I think there's a lot of studies going on so that we can hopefully have better recommendations in the future. And say, "This is really what we think from a different type of exercise perspective, the quantity and all those different things that people should be doing." So we've got lots of questions and comments coming in, and I think some of them are really interesting. What are some of the best exercises that you are thinking? Jessica actually, recommended adaptive physical education programs at public colleges are a great option. So finding the colleges that actually have those as part of their programs and participating there if you are older or if you're looking for something that might work for you. So we've got a question for somebody and they've actually written that therapy is not working for me anymore, do you have any suggestions? And I think this is an adult with CP.
Chris:
Therapy's not working anymore. Well-
Rachel:
Yeah. And I think this is something that I suppose, when we are looking at adults and looking at what can we do? This is where more research is needed. Right. Because I don't know, we don't necessarily have all the great answers.
Chris:
Yeah. That's so true. I mean, you could try to find some other therapist that maybe have more experience with working with people with cerebral palsy. But like I said, the research is not where it needs to be and it's especially not where it needs to be with adults. So we're lagging behind with the children and we're really lagging behind with adults. So, like our study, you may not qualify but if you can help us get the study done, like reach out to other people who qualify and say, "Hey, you need to participate in this because the sooner we do the studies..." This is a trial. This is funded by the National Institutes of Health. And there are other trials and we're not going to.... We're going to go as long as we possibly can to get all the people that we need and answer the questions as well as we possibly can.
Chris:
But until we finish the studies, we can't move on to other studies. So like this study right here, technically, it should be done at the end of May, but we had trouble recruiting at the beginning and then we had the pandemic. So we're behind in our recruitment. So, if you can help us get the people we need, then we can move on to other studies. And funding agencies, they want these trials to be done, so they have reason to fund other trials. But if the trials are not successful, it makes it hard to say, "Oh, we need to keep investing money in this area."
Rachel:
Yeah. I think it's such a great point when we're thinking about how can the community be involved in research.
Chris:
Mm-hmm (affirmative).
Rachel:
Actually, participating in it is one of the biggest factors because, as you said, unless we get the results and move on, then getting future funding is really difficult. And for everyone listening it's Cerebral Palsy Awareness Month, this month, and we are really advocating for federal research funding. And we are doing that because of all the gaps in the literature and all the gaps in our knowledge that we don't have. And when we are talking about these large research studies, we need federal funding because they're expensive and private foundations like ourselves and like other, they're too small to try to fund those huge studies. I think we are great for looking at funding pilot projects and speed ideas.
Chris:
Mm-hmm (affirmative).
Rachel:
We really need that federal support to take these to the next level. But as you said, funding agencies are hesitant sometimes to continue funding things, if they're not seeing results, if they're not seeing the community participating. So yes, please, if you are able to, A, yourself participate in these research studies or you know somebody who this would be potentially really good for. It's not only potentially a benefit for you long term or your child. I think it can really benefit others to help us identify those gaps. So thank you so much, Chris. And we've got lots of questions in the chat. We'll make sure we answer them. So please go back and check we'll type out for you, but just wanted to say a huge, thank you for us today. And-
Chris:
Thank you.
Rachel:
Amazing. Thank you.
Chris:
Thanks for having me, I really appreciate you.