Rachel Byrne:
Hi and welcome to today's CPF Live. I'm really excited to have Dr. Byron Lai joining us today. Dr. Lai is an assistant professor at the department of pediatrics at the University of Alabama, 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. And his research interests really include incorporating technology to provide accessible evidence-based exercise programs. So we are so excited to have you joining us here today. Welcome.
Dr. Byron Lai:
Thank you. Thank you, Rachel, for the invite, and I thank you for the introduction.
Rachel Byrne:
And just as a reminder, anyone who is actually watching us today, write in the comment section where you are in the world. We know we've got lots of different communities all over the world. And please, any questions that you have, make sure you include them in the comment section, and we'll try to get to them as much as possible. But before we sort of dive into some of the things around all your different research projects and all the wonderful things that you've got going on, Byron, do you just want to give us a little bit more of a background on how you got started in this field.
Dr. Byron Lai:
Awesome. Yeah. So there's one thing [inaudible 00:01:25] I exercise. Now I'm going to be using exercise and physical activity kind of interchangeably. But there's one thing I really [inaudible 00:01:32] sports in exercise. And so when I grew up, I always wanted to be actually a professional surfer, which is funny. I lived in California. But long story short. What I really enjoy doing is movement, any kind of movement. So I've participated in a bunch of sports, just general exercise. And so, ended up going into school and getting involved in exercise research. I actually started in a small facility. It was an adapted fitness facility in California. California State University in Northridge, where they had students pair up, actually, with people with disabilities. And they were their exercise instructors for essentially like a class curriculum, for a semester. And I started there and I got so excited that I could share my passion for exercise and research with other people.
Dr. Byron Lai:
And that's really where it all started. And then I became an exercise instructor for people with disabilities for about six, seven years, and then I ended up teaching there at the school. And then I ended up going into research, doing my PhD here in Birmingham, and then a couple of postdoctoral studies here in Birmingham. So I've been in the exercise research field for people with disabilities for over a decade now and really just trying to move that field forward. And so really, what I'm passionate about now is not just this weird term "research" or this kind of jargon term research.
Dr. Byron Lai:
But what I like to do is try to conduct research on exercise for people disabilities, while also creating free opportunities to actually help people with disabilities engage in exercise. And so my current... My original research started with adults, but now I'm really transitioning into kids, because I've seen that there really is a need here. If you compare the adult exercise research literature, the number of studies is actually really large. But then when you look at research for kids, there really isn't much there, and that's really why I'm kind of in this area now.
Rachel Byrne:
And I think it's so important, because when we're looking at lifespan, healthy habits and creating those lifelong exercise habits that we all need, it's really important to think, "Well, how do we develop this in kids? And how do we then see that through to adolescence and into adulthood?" So obviously, you're at the Children's of Alabama and part of the UAB team, but you're also part of NCHPAD. And I don't know if many people actually even know who NCHPAD is and what they stand for. Could you just elaborate a little bit on what you do with NCHPAD?
Dr. Byron Lai:
Goodness. Oh yes.
Rachel Byrne:
Actually what NCHPAD stands for, before we even just start using acronyms.
Dr. Byron Lai:
Right. It's a long acronym. So NCHPAD, N-C-H-P-A-D stands for the National Center for Health Activity and Disability. And if you don't know, or you've never heard of it before, it's actually the largest website resource for people with physical disabilities, in terms of health, nutrition, and exercise. And the website is actually nchpad.org. They have so much resources there. There's exercise videos, if you're just looking for something to exercise to. There's information for health professionals to better serve their community. There's information for fitness instructors who are looking to start to exercise and train people with disabilities. So there're all sorts of resources there. But yeah. I'm actually... In my current position, I'm actually part of the University of Alabama at Birmingham. I'm part of NCHPAD, as we just mentioned. I'm part of the Children's Hospital of Alabama here, and I'm also part of Lakeshore Foundation, which is one of the largest fitness facilities honestly in the country, for people with physical disabilities. So I'm kind of a little bit everywhere. Thank you for bringing that up, Rachel.
Rachel Byrne:
And the website for NCHPAD is in the comment section, so please feel free to look at that and browse through anything that you need. And just so you know, Byron, we have some wonderful people joining us from all around the world. We have Germany, as well as New York, Alabama. And so, thank you everyone who is tuning in right now. Dr. Byron, a little bit more about your research. Because I think we've sort of touched on that you've been in this field for a very long time. I think you've really researched some quite broad topics as well. But when we're talking about... Let's start with adults. So when we're talking about this sort of field for adults and the amount of literature that there is, what are some of the major research findings that you've sort of seen in the last five years?
Dr. Byron Lai:
That's great. So our team here... Our team is about 40 people in research. And so, we've done systematic reviews or reviews of the literature, so we've kind of gone out there, sought all the studies that are actually published, brought them all together so that we can make some sense of it. And so, the general consensus right now for, if we're going to focus on adult literature, is that exercise is beneficial for everyone. Right? I tell everyone, including the families I've coached, that if you had to put the benefits of exercise in a pill, all the benefits in a single pill, we would be the richest people on earth. Because the benefits are so ginormous. There's so many different types of benefits. Right? And what I would like everyone to get from this call is that, generally the benefits of exercise are the same for everyone, and that includes people with disabilities. Right?
Dr. Byron Lai:
But having said that, there are additional reasons why people with disabilities should participate in exercise, more so than the general population. One of those reasons is really prevention. And so for example, in cerebral palsy, as children or adolescents aging through adulthood, there's a study that's demonstrated that they're actually 1.5 times more likely to experience cardiovascular disease and related conditions, and 20% are likely to experience metabolic syndrome. And so, if you participate in regular exercise, you're actually able to reduce that risk by reducing obesity, having healthy cholesterol, healthy blood pressure, et cetera. And so, prevention is a real key for exercise. That adolescent period is a real key. Because everyone, when they're in school like K through 12, they have physical education. Right? But as they transition into adulthood, in college or just outside when they're working or just at home, that exercise participation is generally reduced, but even more so in people with disabilities. Including cerebral palsy.
Rachel Byrne:
And I think that's such an important piece. Because as a foundation, we talk about many different things. And for anyone that needs to find out more information, you can always go to cerebralpalsyresource.org or cpresource.org, which really has a lot of different pieces of information. But as part of that website, we talk about the importance of understanding body structure and function. We talk about the elements of activities and participation, and all the social components. But I think it's really important not to forget that exercise really does have pure health outcomes and that all of us have a risk of cardiovascular disease or these other different comorbidities that exercise can really help to prevent. So I'm so glad that you brought that up at the very beginning, because I think sometimes we overlook it. Because obviously there's so many other benefits when it comes to socialization and participating, but there are actually some really important health benefits too.
Dr. Byron Lai:
Yes. And if it's okay, if I can share the screen right now, I'd like to share this.
Rachel Byrne:
Yeah. Absolutely.
Dr. Byron Lai:
You can hear me talk about it in several days, but I think it's better if I just show you. Give me a second.
Rachel Byrne:
I'd love that. And just so you know, we've got a lot more other people joining us. And one has actually asked, "Can we delve more into the metabolic part?" So we'll do that just after we get through this next slide.
Dr. Byron Lai:
Awesome. So I'm not going to go through this whole presentation, because that's not what we're here for today. But this was from an actual review of randomized controlled trials of exercise for people with cerebral palsy, children and adults. So randomized controlled trials are kind of like... If you don't know what those are, those are essentially one of the highest levels of evidence for conducting a study that examines, essentially, the benefits of exercise, at least for here. And so, we took all these studies, put it together and put all the outcomes that can be improved from it in this table here. So on the left side, you have the number of studies, published randomized controlled trials, and you have the different benefits that we kind of lumped them into here. And then, we even broke it down by all children and then... Oh, I'm sorry. Not children.
Dr. Byron Lai:
All people and then people with Gross Motor Function Classification System level of four to five here. I can explain what that is in second. But if you look at this, I mean, the benefits are across the board. You can experience benefits in musculoskeletal health. That includes muscular strength, muscular endurance, improvements to spasticity, as well as just general increased range of motion. You can improve gross motor skills, physical function. As exercise or physical activity can improve walking ability, walking endurance, just general local motor function. It can improve cardiorespiratory health, as in someone's aerobic capacity, and give them more energy and it can generally improve their quality of life. There's a little bit of evidence for mental and metabolic health, but that's for another topic and another point of discussion.
Rachel Byrne:
Yeah.
Dr. Byron Lai:
But one thing I do want to take home from this picture is that, even for GMFCS levels four through five, which I can go through here, which are these levels right here, there's exercise for everyone, essentially. No matter what physical function that you have, essentially. And that's really what our field really focuses on. And our field is really adapted in physical activity. So what I mean by this is, exercise is for everyone. There's some kind of evidence that demonstrates that exercise is beneficial for everyone with CP and that's really one of the take-homes from this graph right here, which is really exciting.
Rachel Byrne:
And I think... This is a wonderful sort of representation, as you said, of all the different benefits and how it can impact in so many different parts of somebody's life. And just to sort of make it a little bit clearer. So when you're looking at all GMFCS levels and then these GMFCS levels four and five... So there are people that may use a power wheelchair or may need a sort of extra assistance with their mobility. What are some of the activities that you can do? We've got a lot of people putting recommendations already in the comment section about some of these activities and what is good for cerebral palsy. We've got a lot of people saying swimming, other people are saying yoga and pilates. Now, before we get into some of those specific things, you've just actually recently published something on leisure activities and the benefits of what people would perceive as a leisure activity. Can we sort of... Let's just start talking a little bit more about that.
Dr. Byron Lai:
Yeah. That's great. So that's actually this slide. So this actual presentation I'm pulling from, I had to do for that paper that was published recently on leisure time physical activity interventions for cerebral policy. And so, I love that someone in the comments mentioned aquatic exercise, because I was actually a swim instructor for like eight years for kids. But yes, aquatic exercise is great, especially adaptive aquatic exercise. So if I'm looking at this graph right here... In the last graph, we were looking at the actual benefits of exercise intervention. I'm going to say exercise leisure time for their activity interventions. I'm just using those terms interchangeably. These are the types of interventions that led to those outcomes in that last slide. So you have general strength interventions here, which are the typical weights, resistance stands, assistive strength exercise, you name it.
Dr. Byron Lai:
We have combined conventional exercises, which are essentially strength and aerobic exercises. Note that flexibility is generally mixed into here as well, within these studies. You have active video games, which is really cool. I was actually surprised see quite a bit of evidence for this to improve health. And active video games are really the Nintendo Wii, the Xbox Kinect. You might've heard of these or might even have these, these are really popular within the past decade, I'd say. There's sports, leisure, recreation, which would include the aquatic exercise. There's hippotherapy, horseback riding. There's a lot of really cool programs here. Group class exercises. One of the studies was, I believe it was wall mountain climbing. If you know what I mean. Rock climbing, sorry.
Rachel Byrne:
Rock climbing. Indoor rock climbing.
Dr. Byron Lai:
Indoor rock climbing. [crosstalk 00:15:09]
Rachel Byrne:
Wonderful adaptive locations, actually all across the country for indoor rock climbing.
Dr. Byron Lai:
You've got it. There's balance training, functional motor skills training, which is a little bit more on the therapeutic exercise side. But there's also this piece right here, which is behavioral coaching. And a lot of public health professionals and exercise professionals like this piece, because behavioral coaching is really what I do a lot with families. Instead of being there exercising with the family, we use behavioral strategies to coach them, to engage more in exercise, and that's an easier way for us to reach more people. And there's actually evidence for this too. So a lot of different types of exercises. There's also sports. Right?
Rachel Byrne:
Yeah.
Dr. Byron Lai:
Adaptive wheelchair. I'm sorry. Adaptive tennis, adaptive basketball, adaptive rugby, so there's a lot of different sports out there too.
Rachel Byrne:
And so we've got a question that's coming from Bob, and sorry Bob, I'm not quite sure how to pronounce your last name. "How does active video gaming provide exercise and movement?" And I think this is sort of a question that a lot of parents think about going, "Okay, my child wants to do video games. Is this good for their health?"
Dr. Byron Lai:
Yeah. Active video games are really cool. So that's actually one of my current research focuses right now, actually. And so, how you can get exercise through active video gaming, is generally through the arms only. The reason why that's great, is because people who use wheelchairs can get full cardiovascular exercise from just exercising the arms. So the Nintendo Wii and the Xbox Kinect, those older consoles, they always have handheld controllers like this, and you can essentially play the video games while you're exercising or exercising while you're playing the video games.
Dr. Byron Lai:
So it's essentially a means of kind of like distraction while you're playing the game, and you can actually get serious cardiovascular benefits from this. And that's really what these studies are showing. It's kind of interesting. I was going to go into this a little later, but what I'm kind of working on right now is... Is kind of the newer system of active video gaming. So I would mention the Nintendo Wii and the Xbox Kinect, and those are kind of... Unfortunately, those are actually discontinued right now, I don't even think you can buy them in the store. You have to buy them from eBay or something like that. So the newest active video gaming consoles or devices... Oh. You can't see it on my screen.
Rachel Byrne:
Virtual reality.
Dr. Byron Lai:
Yeah. So actually these virtual reality devices that you can see right here. They're essentially the same thing as the Nintendo Wii and Xbox Kinect, except you can just put it on your head and do the same thing. Now, the reason why these are the new kind of latest trends, is because they're actually cheaper than video game consoles now. So three years ago, to be able to use this kind of headset, you'd have to plug it into an expensive computer that costs like $2,000, a strong computer, to be able to play these high intensity games. Or high demand games. However, now you can just buy this headset for like $300 and it comes with everything you need, essentially, to get going, and that's cheaper than a PlayStation 5 even. But I digress.
Rachel Byrne:
But I think it's so important. When we are thinking about the opportunities to exercise, that there are so many things available to us. It's not a one size fits all. And this is sort of what I want to go into a little bit next, because we've sort of spoken about all these different types of exercise. Who should someone go to for an exercise program? I'm a physical therapist and obviously I have helped develop different exercise programs. But I've got actually, I suppose, a bias in wanting people to be more out in the community, and being part of sports teams, going to the gym, or finding friends and exercising that way. But where do people go? Where can people go to actually start developing these exercise programs?
Dr. Byron Lai:
That is a tough question, Rachel. So our field, adaptive physical activity or adaptive physical education. Right? So you get certifications in essentially how to train and how to exercise with people with disabilities. And physical therapists are also great resources, but essentially these are the three kinds of people, if I was a parent or a person with disability that I would reach out to. So I reach out to adaptive physical educators, adaptive physical activity specialists, or therapists or your physician who can perhaps coach a little bit about exercise. But if you're really looking for someone who can provide these specialized adaptive opportunities, you're really looking at the three, therapists, adaptive physical educators and adaptive physical activity specialists. And so how do you reach those? Those aren't everywhere and that's kind of the challenge. So I work with a lot of families from our children's hospital.
Dr. Byron Lai:
Some families are very lucky at their school to actually have an adaptive physical educator, who works at the school. So that's fantastic. But I would say that's the exception, that doesn't happen everywhere. So where can you go to? Well, if your therapist is quick and easy to access to, you could probably go to them. Or you could go to these online resources like NCHPAD, nchpad.org, that have access to coaches online even that you can really sync with. I think even Lakeshore Foundation even offers online, as in like virtual exercise classes, for people with disabilities. And so, with COVID now hitting, there's actually a transition towards a lot of online exercise opportunities for people with disabilities, including people with cerebral palsy. Right now, I'd say if you don't have someone nearby that you can actually contact, or with COVID related concerns you don't really want to contact right now, there's a lot of web based opportunities. I'm sure Rachel and myself can direct you to those if you really-
Rachel Byrne:
Yeah. Definitely. We'll make sure that after this, we'll have them in the comments section, because I think this is one of the silver linings for what's happened in the last 12 months with COVID. It's that there now are online opportunities. And we know these online, whether it's an exercise class, whether you're actually now able to just have a consultation to develop an individual wise program for you, that there are so many more available. And I think really excitingly, hopefully more will become available in the future as well.
Dr. Byron Lai:
Absolutely.
Rachel Byrne:
That's one... My next thing, Byron, that I wanted to ask you about. What are you working on next? Because I think this is the piece in this space that I'm really excited about.
Dr. Byron Lai:
Yeah. So it's interesting. We're kind of... It's all coming together here. So one thing I was really excited about, one project we're writing up right now for publication. It just finished. We did a group virtual reality exercise program. So I mentioned... Maybe it's better I'd share the screen again. Maybe a little easier. So we did a group exercise class at Lakeshore Foundation. Well, it wasn't conducted at Lakeshore Foundation. But we sent about 10 headsets home to kids who are Lakeshore members, and so they're able to exercise at home with the headset. And we all met up twice a week online in a virtual world and actually exercised together. It was really cool, because we interviewed the kids after and they said, "Hey. I didn't go to the gym once COVID hit, because of obvious health related concerns."
Dr. Byron Lai:
But since we were able to get in the virtual world where you have a virtual avatar and you see the other people and you interact with them, we were able to exercise together and play video games while we're exercising, and get some socialization which is really some something that everyone right now in this time period is kind of lacking. So it's really cool, because we had a group exercise program using virtual reality that we did at the home, and it was really exciting. It's still ongoing right now at Lakeshore Foundation. But this is one of the things I'm working on. We just submitted a grant to NIH, the National Institute of Health, to try and get this on a little bit of a larger scale, for more kids. So this is one thing I'm really excited about. This is one of my kind of major areas of research. The second thing we're doing is actually a movement to music home-based telehealth program for people with cerebral palsy as well. And so...
Dr. Byron Lai:
Classes that were actually created at Lakeshore Foundation, the adaptive fitness facility, and we... That has different levels for people with different... And so we're able to prescribe this home-based video program with music, and then we have this weekly coaching with them to... and getting involved in just general exercise within their community as well. So those are the kind of two main things we have going on.
Rachel Byrne:
We've got some wonderful and different comments coming in as well. But one question I have. We've talked about different options that people have. Is one better than the other? I know if you can't access in-person, obviously you could go to video gaming and virtual reality. Or are they equal? Like what's their research saying in regards to that?
Dr. Byron Lai:
Oh Gosh. Yes. So that is something that is still debated. So generally, our field is transitioning towards this, "exercise is medicine" term. Where we can prescribe exercise and it can improve health like medicine. The problem with that is honestly, we don't know the specific dose of exercise that is necessary to get specific health benefits. So the general recommendation that any health professional will generally prescribe to anyone, not just people with physical disabilities, is to reach a 150, one five zero, minutes of moderate intensity physical activity per week. So 150 minutes of moderate physical activity or exercise per week. And how do you measure that? Usually heart rate. So moderate intensity exercise is like... Let's say I'm jogging or something. I might be breathing a little bit rapidly. I'm definitely working, but I'm not so exhausted that I'm like panting and I'm about to pass out. Right?
Dr. Byron Lai:
Not extremely vigorous, and it's not light intensity exercise as well. So it's somewhere in the middle. And so, the general recommendation is to get 150 minutes of moderate physical activity per week. Now, the tricky part is, having said that, there's actual cerebral palsy specific exercise recommendations created by Verschueren and colleagues. They're excellent researchers. Where they actually demonstrate... They looked at the literature as well and looked at kind of what benefits that people can get from exercise.
Dr. Byron Lai:
And without saying specific numbers, they're able to recommend that even if you don't reach this 150 minutes, you can actually get a lot of benefits from doing a lot less. They actually said a minimum recommendation was 20 minutes, twice a week, for health benefits. And so, it's really tricky on what to prescribe. I would just say, start from a baseline. Whatever your baseline is, continue to try to do more. Don't stress too much about how much you're doing. Yes. Try to do 150 minutes of moderate per week. Start from where you're at, slowly work at it and just keep progressing until you're getting towards this point where maybe you are reaching those guidelines down in the future.
Rachel Byrne:
I think that's such a great recommendation, because sometimes it can be quite intimidating starting an exercise program going, "Oh my gosh. 150 minutes? That's a lot to do." But you know, as you just said, start off small. Start off with five minutes, 10 minutes, 15 minutes. Start off with something that you might have not thought was exercise. There are some wonderful activities you can do.
Dr. Byron Lai:
Yeah. So you said, what kind of activity would you recommend over the other? Right?
Rachel Byrne:
Yes.
Dr. Byron Lai:
And so this is coming down to that answer. The real answer is, whatever you think you or your child will do for a long period of time. If that makes sense. So generally, yes, if we can get people exercising with weights and all these kinds of traditional things you'd see at the gym, that's great. But really whatever is enjoyable and something that you will stick to, is my personal opinion on what you should prescribe. Right? So if someone enjoys swimming, like someone did into comments, like yeah do adaptive swimming. Or like swimming period. That's great. I was a swimming instructor. I love swimming.
Rachel Byrne:
Yeah.
Dr. Byron Lai:
I could do that for a long period of time. Could you get me on a treadmill personally? And would I do 150 minutes on treadmill per week? No, but I might prefer swimming. Every one has their own preferences. So my real answer is, something that you will stick to for a long period of time and probably preferably something that has evidence for it as well.
Rachel Byrne:
Yeah. No. Definitely. And we've had, as I said, some wonderful recommendations coming through. We've had tai chi, yoga, meditation. We've talked about different sports clubs for wheelchair users and obviously the adaptive sports. Thank you, Stephanie Thea. She's a board member for Wings of Steels sled hockey as well. So I think all of these different examples, all these different recommendations, are really a great place for a lot of people to start. Think about what you enjoy and what you love, and go from there. And you can be creative, I think. I don't think you have to do the same thing. Is that right? You could do many different types of exercise throughout the week. You don't just have to do the one thing.
Dr. Byron Lai:
Definitely. More is better. More is better, period. Right? Different kinds of activities. There's actual exercise principles for this, just doing different kinds of activities, stretch your body in different ways, it's going to be beneficial. So yeah. More is better. Always. Yeah.
Rachel Byrne:
So next sort of type questions that I have for you. Was something that you sort of did mention around this sort of behavioral modification sort of training, can you talk a little bit more about that? I know it was up on your previous slide. So for those who are just joining us, please make sure you go back and watch the rest of the video at the start. But you know, it sometimes is about, "Well, how do we actually change our behaviors?"
Dr. Byron Lai:
Yeah. Great question. So right now, myself and a couple of other people on our team here, we're publishing a paper in the Lancet on general benefits of exercise for people with disabilities in general. And the consensus of that paper, without getting into details, is that really the benefits are essentially almost the same. Right? As for people without disabilities. And so what that means is, great, exercise is beneficial for everyone, so we shouldn't really get hampered on the benefits. We should really get people in exercise. And so in our field, in the past 30 years, research has really been looking at these clinical benefits. The problem is, we have so much research on benefits, we actually don't have that much research on how to get people engaged in and sustaining exercise behavior over a long period of time. And so, the current... I would like to believe, that researchers are now transitioning into, "Okay. Benefits are great and we still need to do this. Yes."
Dr. Byron Lai:
But we're going to transition into getting into developing strategies on how to get people active. And so, behavioral coaching is kind of the... I don't want to say it's the... It's the most generally accepted kind of technique right now that's cost-effective into getting people active. What I mean by that is, what we use is these behavioral strategies that are underpinned by theory. One of the big ones is social cognitive theory, and so we use kind of specific strategies, such as goal setting, confidence building, barriers removal, and just teaching or understanding the benefits of exercise to really... We do that very precisely. I'm kind of butchering it and over-
Rachel Byrne:
Yeah. Yeah. No. I get it.
Dr. Byron Lai:
Yeah. We use these prescriptive strategies to get people to kind of overcome the challenges that prevent them from exercise, as well as engage in it and sustain that behavior. And so, we do that combined with adaptive exercises to really try and get them going for the long run in exercise.
Rachel Byrne:
So I think the great thing that I'm sort of hearing here though, is that there is actually a lot of research to back up these recommendations. There is actually a lot of information, potentially for adults with CP as well, that in a lot of other fields, research is lacking for adults with cerebral palsy. There's no doubt about that. There're huge gaps and we've got a lot more work to do. But it actually sounds like around exercise and the benefits of exercise particularly, the evidence is there. It's there, it's shown and now it's just the fact, "All right, well, how do we get this to happen? How do we implement these different strategies?" Things like goal getting, things like scheduling, organizing with a friend, all those different things that will help change behaviors.
Dr. Byron Lai:
Yes and no again. So in research there's never a black and white. Right? Always a little bit gray.
Rachel Byrne:
Yeah.
Dr. Byron Lai:
I'm going to share my screen again. I'm definitely generalizing, in that we do need promotion more than benefits. The problem with that is, we still definitely do need research in benefits. And so, I'm taking up this study again, where we looked at the randomized controlled trials of physical activity for people with cerebral palsy. And the problem with this is, is that there were actually only really seven randomized controlled trials for adults, and there were actually 42 randomized controlled trials for kids and/or more than that, 47. Actually, we probably do really need to build a lot more evidence for interventions that are capable of getting adults active, is what I'm saying, while also kids. I mean, we need research everywhere.
Rachel Byrne:
Yeah, definitely.
Dr. Byron Lai:
But there is a little bit of discrepancy there, in terms of research in age groups, is what I wanted to put very quickly.
Rachel Byrne:
Okay. That is good to know. I think from our foundation perspective, we are committed in this area. Pushing research forward, but also pushing outcomes forward and pushing ideas for this implementation to make sure it's available to everyone. Now, we've got a question coming in, which actually talks about exercise specifically affecting spasticity. So then, that's a good one and we may not know the answer to some of this yet, I don't know if it's actually out there in the literature. But can the length of time one does exercise affect spasticity? Is there anything there that shows that hitting your 150 minutes improves things like spasticity? Or what does the literature say?
Dr. Byron Lai:
Yeah. That's a tough question. First off, I was actually looking through these studies a little bit in more detail before I came on here, just so I can prepare for a question like this. So I am going to be very careful in how I address this question, because honestly, the evidence isn't really there. So there was really only like one or two studies, within all of these 40 or 50 studies, that had a benefit to spasticity. What I mean by that is, I'm not confident in really answering this question definitive, to give you some specific prescription to improve spasticity. All I can confidently say is, exercise can improve spasticity. So in theory, without looking at the evidence and just going off of kind of my own personal opinion, I was saying that more exercise is always better. Well, there's a kind of a border to everything. Too much of a good thing is always a bad thing. Right?
Rachel Byrne:
Yes.
Dr. Byron Lai:
When I coach one of my kids right now, he's walking a lot. He walks like five miles in a day sometimes, and I go, "Okay. You got it. You're doing great. I'm really proud of you for doing that much. But we're going to have to add some flexibility in here to loosen you up a little bit, because tightness is something we have to worry about for you." So over training is a thing, is what I'm trying to say. So too much of exercise, perhaps in theory could be detrimental to spasticity, but I can't tell you that for sure, honestly. Because like I said, the evidence isn't a hundred percent there.
Rachel Byrne:
And I think it's not that the evidence is there saying that it does or it doesn't, it's this fact that there just isn't even studies that have looked at it.
Dr. Byron Lai:
Yeah. We can't come up with a specific prescription, in like this many minutes will improve spasticity or this many will be too harmful. And that's what I was coming back to when I was saying, we like to believe we prescribe exercise as medicine. But we're not at the point where we're prescribing exercise so specifically that it is medicine. As such as that question was like, "Okay. I should do 30 minutes of exercise of this to improve spasticity this much." Right? We're not quite there yet, but hopefully we get there in the future. That's why we need more research on benefits or health outcomes.
Rachel Byrne:
Which is amazing and I am so thankful, obviously, for you taking so much time with us here today. If anyone has any final questions... And thank you for everybody who was sharing their resources in the comments section as well. That's amazing. That'll be there, so please take the time, go click through, have a look at NCHPAD. They really do have a lot of exercise guidelines in there. So have a look at it, sort of obviously emphasizing everything. And we'll also share some of your latest research in the comment section too. But I just wanted to say such a big thank you for you joining us this afternoon and I hope everyone enjoyed having you on.
Dr. Byron Lai:
These are great questions. Come on people. Throw them at me.
Rachel Byrne:
Oh. Okay. Well, we actually... Hang on. All right. So there's one person that has just asked, "When is your next gaming session?" I'm not quite sure if I understand that question. Do you do... So for the gaming, I suppose the gaming sessions that you've spoken about with what you're doing as part of the study, can people get involved? Like what do they do if they want to get involved?
Dr. Byron Lai:
Yeah. So the research that our team does is really focused on telehealth, exercise and disability. Those kind of three key terms. And so, the beauty of that is, unlike other research sites where you have to do research onsite at a facility, since we use telehealth... Right? Like information and communication technology, like video conferencing, et cetera. We're able to recruit people from across the country. Right? Which is really cool. Versus what we've done, what we used to do before this kind of era. And so, if someone is looking for some kind of opportunity, like the virtual reality gaming session, we still do have opportunities like that. So by all means, reach out to myself or Rachel if that works and we can try and hook you up with some of these things. Lakeshore Foundation specifically has a home rental VR.
Dr. Byron Lai:
Actually like several sets of home rental VR systems. So their members can actually rent the system, I just ship it to their home or they pick it up at Lakeshore Foundation and they can rent that out for a period of time. They're not paying for it. It's a loaner system, I should say. And they can play the exercise games, everything's installed on the system. There're instructions, like YouTube videos of me instructing people through it.
Rachel Byrne:
Yeah.
Dr. Byron Lai:
And so, there is actually a home loan program, but then we also have those group exercise programs where we meet, to do that as well. So there are opportunities, do reach out.
Rachel Byrne:
So we've just had another question come in, and this is a really great question when we're thinking about research, particularly in cerebral palsy. But does variability have something to do with not being able to answer the question of spasticity and exercise. No two persons with the same disability are the same, and exercise might work differently in each participant. So why I love this question is, because it comes down to sometimes research methodology and how you can actually look at finding these answers.
Dr. Byron Lai:
Yes. Absolutely. And so what I love about this population, cerebral palsy, is that it's so heterogeneous. It's so diverse. Right? No one person is the same. In terms of physical function too, particularly. So we've been talking about sports a lot actually, but that actually might not be appropriate for a lot of people. Right? And so, there's a whole spectrum. If you talk to an adaptive exercise professional, or a specialist, or adaptive physical educator, they'll know that there're exercises for everyone on this spectrum that we like to call, this transformative exercise spectrum. So on one end of the spectrum, you'll have these sporting recreation opportunities and that might be appropriate for a lot of people. Then you have on this other side kind of a more, I don't want to say therapeutic exercise, but it is kind of a therapeutic exercise in nature of activities.
Dr. Byron Lai:
Where the exercise is not really focused on this sport where you're going to perform this kind of activity that's based on success or failure against other people. But it's really focused on improving a certain condition like spasticity, for example. There's actually opportunities across the spectrum for all sorts of people, and that's why it's so hard to make specific prescriptions as well, because everyone's different. So I do recommend someone reaching out to an adaptive fitness professional or a physical therapist, for example, to kind of get that specific prescription for you. I'm making these generalizations here, but just know that-
Rachel Byrne:
And that is part of, when we are looking at research methodology in cerebral palsy, it is sort of part of the tricky beast that we do. Because obviously, when you're thinking about a randomized controlled trial and potentially research, is you want groups to be the same. Because if you can have one group is a control and one group where everyone else sort of has what you would say the same, I suppose makeup or whatever we want to call it, you can do comparisons. But yes. That is a very tricky thing when it comes to see CP, is that sometimes in the research studies, we can't get enough people recruited to the study to be able to do these comparisons and to look at the answers. But does it also depend on the outcome measures that you are using? Because I think that's sometimes really important, to make sure that the research that you're doing is actually measuring what you want it to measure or what outcomes that people think are useful.
Dr. Byron Lai:
Oh. Yeah. We could talk about this all day.
Rachel Byrne:
Yes.
Dr. Byron Lai:
I don't want to get too much into the research.
Rachel Byrne:
No. Totally.
Dr. Byron Lai:
We certainly could, but the answer is yes and yes. It depends on the methods you use and that's probably what research is all about. Making sure you're using tools that measure what you're measuring correctly, or as accurate as you can, or as valid and reliable as you can. We can get into the details, but I don't know if we should here.
Rachel Byrne:
But I think the answer is... Yeah. But I think the answer is though it's not going to be impossible to find out some of these things, because I think some of the research just hasn't been done. And so, the studies actually just need to get done. People like yourself need to be interested and want to do these studies. So it's so wonderful to see all the research that you're doing. And with different recruitment strategies now, we can do things across networks. We've got opportunities to actually look at some of these and find some of these answers.
Dr. Byron Lai:
Absolutely. So coming back to the question a little bit.
Rachel Byrne:
Yeah.
Dr. Byron Lai:
Our research studies right now are kind of grouping people and classifying people to kind of put them into this group where they can compare at this kind of generalizable level. They're typically using the Gross Motor Function Classification System, GMFCS level. And that has limitations, but also has benefits. We don't have to get into that. But there are better ways of doing this too, and I don't don't know if we have to get into this kind of nitty gritty research details. But I would actually say using the ICF, which is probably a better method... If someone's curious about that, they can reach out to me after. We probably better not dive into too much of those kind of details.
Rachel Byrne:
No. And we've actually done quite a few videos around the ICF, and actually cerebralpalsyresource.org is based on the ICF model. So yes, if anyone has any further questions, please let us know. But I think we are almost at time, so I'll have a look. There's one more that, actually, I think I'd like to sort of put to you. Because it's a question from Hannah and she says, "For my son, as soon as he just thinks about moving, his legs get very tight. Is there anything we can do to prevent that?" And I think it comes down to potentially... Are there different choices with exercises that might be more beneficial for that?
Dr. Byron Lai:
Oh goodness. Yes. So this is a very interesting question and I probably wouldn't have been able to answer it until a couple years ago, until I started working with the population a little bit more hands on and working with families. And so, it's really interesting. Like we said, no one person is the same. Right? So some people have different cues. Some people with cerebral palsy have different cues that make them tight up or loosen up a little bit more. So for example, one mother was telling me recently that, "Oh. These exercises we're doing are great, because they have music. And whenever I try to do any general exercise with my child, they tighten up immediately when I try to exercise with them, like as I assist them through the movement. But as soon as I turn on this music that they love, she gets into it, she's smiling, she's loosened up. She's not fighting me anymore."
Dr. Byron Lai:
And so, I would say there's something about music... It's just my personal opinion. I don't have evidence for this. Right? I would say there's something about music that can loosen somebody up, in terms of spasticity. I don't have evidence for it, it's just personal opinion. Right? But there's general cues that will work for, I would say, not necessarily everybody. But there's sometimes these cues that can work for an individual to essentially loosen them up. And so for this family... And this is not the only one I heard this from. But for this family, getting the kid to listen to her favorite music, essentially while she was doing exercises, was her cue to loosen up and not fight the mother while they were doing exercises together, as assisting the exercises.
Rachel Byrne:
Yeah.
Dr. Byron Lai:
I also heard that from another family as well, recently. So there's something perhaps about music, it's just my personal recommendation, but everyone has cues to essentially have them loosen up. It could just be verbal cues too. Like some kind of a word or phrase that might lighten up the kids.
Rachel Byrne:
Oh. So I think the great thing is, is that there probably is something that can be done and can be helped. And potentially finding this exercise specialist in your area will be a really good place to start and start asking these questions.
Rachel Byrne:
Well, Byron, I just want to say, thank you. Thank you. I know I've taken so much of your time this afternoon, but we're so grateful that you've taken the time and I hope everyone has enjoyed the conversation.
Dr. Byron Lai:
Yeah. It's been wonderful to do this. So if anyone's curious about opportunities, like we were talking about, NCHPAD is great. Cerebral Palsy Foundation is a great website. So I mean, there's so many resources these days due to COVID honestly, that are just out there. Just knowing how to get those is usually the hard part, so please do reach out to either myself, or Rachel, or someone at NCHPAD and we'll definitely get you sorted out.
Rachel Byrne:
Amazing. Well, thank you so much. And thank you everybody for listening in this afternoon.