Rachel Byrne:
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 of 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 Modlesky:
Thank you, Rachel, for having me.
Rachel Byrne:
Of course. Of course. 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 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 Modlesky:
Sure. It depends on the level and the degree of involvement of cerebral palsy and how active the children and adults are. The muscles tend to be smaller. The quality is not as good. It tends to be infiltrated with fat and in collagen. Also, the belly of the muscle tends to be shorter. The belly of the muscle, that's the part that contracts. So overall, muscle is smaller. The quality is 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. We need to do more studies to look at that more closely.
Rachel Byrne:
Why is it so important to understand, I suppose, what is happening at the muscle level? Because obviously, we know that there are 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 Modlesky:
Well, the muscle is what allows the person to move. 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. Protein, not only it's a metabolic fuel, not a major metabolic fuel, but it is. But also, it's important for other tissues in the body, like 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. That's important for reducing your risk for chronic diseases like cardiovascular disease and diabetes.
Rachel Byrne:
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.
Rachel Byrne:
Now, if we think about the bone, what's going on at the bone level for cerebral palsy? Is it the same sort of outcomes as what we see in the muscle, for example, increased fatty deposits? Or is it different?
Chris Modlesky:
Well, the muscle and the bone are very connected. The muscles, many of them attach to bones. So in some ways, they'll mirror what the other is doing. Like I'd mentioned, smaller muscles, the quality of the muscle is not as good. The architectural properties, depending on the muscle, may be compromised or not as you would expect. And the same with bones. So bones tend to be smaller, thinner, and the marrow within the bone tends to have a higher concentration of fat.
Chris Modlesky:
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. Also, if you have a lot of fat in your bone, then you have cells in the marrow and they could go in different directions. So they can become bone cells, or they could become fat cells. And if you're doing things, loading the bone and doing things that you would expect someone 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.
Chris Modlesky:
Also, the structure of the bone. If you look at a long bone, it 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. And if you're not loading the bone, like a lot of people with cerebral palsy, then the walls aren't as thick, and it's a weaker bone, and it's more susceptible to fracture. And then also, on the ends, you have spongy bone, which is a lot more porous, but there's a network of bone. And that in people with cerebral palsy, tends to be a lot less connected, thinner structures, and more susceptible to fracture.
Rachel Byrne:
You just use the term loading the bone. Can you just explain a little bit what you mean by that?
Chris Modlesky:
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 the stress, and depending on the level of stress and the strength of the bone, will dictate how much strain there is on a bone. 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 risk for fracture is greater.
Rachel Byrne:
I think it's really important when we are 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. Has research shown anything that this changes as you age for people with cerebral palsy? 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?
Chris Modlesky:
Sure.
Rachel Byrne:
But 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 Modlesky:
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 the loading. But also dietary, so you need dietary support. So taking in enough minerals and taking in enough good proteins, and coupling that with activity.
Chris Modlesky:
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. 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? 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 talked to clinicians, they would have a better sense. But we actually don't have a tremendous number of physicians who treat exclusively adults who have cerebral palsy.
Rachel Byrne:
Yeah. No, it's definitely a gap in the research and something that as a foundation, we are 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 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 Modlesky:
That's right. It does. Yeah.
Rachel Byrne:
And we'll get into your research now. Has there been things 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 need to study in the future?
Chris Modlesky:
Well, I'm not sure. 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 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 I think really would have a lot of promise and help create some better guidelines for people in nutrition.
Rachel Byrne:
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 an important piece for them to discuss with their doctor. 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 Modlesky:
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 ambulate, then that's going to provide the most loading on the bone. And if you're not able to, 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. Standing itself is loading the bone. And the less support you have, the more your muscles work, the better. And then if you're able to move around, then you can walk and run. The more of those things, the better.
Chris Modlesky:
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. Exercise is physical activity, but it's a structured form of physical activity. And during a 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. If you can move weights, then that would be good, so a certain percentage maybe of your body weight. Anything that would involve resistance.
Chris Modlesky:
And I think there are studies showing that it's not just strength training, but also 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 with 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 Byrne:
Yeah. I think it's this sort of really fine balance 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. And 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, if you are 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. But I think what we're seeing now is actually sometimes these structured exercise programs that actually do focus on strength, like you said, do focus on loading and power and all those different things, may give more benefits in the long run and allow then, you to participate in all the things that you love.
Rachel Byrne:
So I think it's definitely watch 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.
Rachel Byrne:
Now, I would really love to discuss your study that you've currently got going on. Could you describe to everybody the current study that you're recruiting for?
Chris Modlesky:
Sure. We have a study that's funded by the National Institutes of Health. We are looking at the effects of a mild vibration intervention, where people stand on a mildly vibrating platform, and we want to know the effect that it has on the muscle properties, so some of the things that we described as far as the muscle, the size, quality, and architecture. So we want to look at those things, also look at muscle function. We're also interested in seeing how the vibration affects balance and coordination, and then how do those things, the vibration and hopefully some of the changes that you make in balance and muscle, and how does that affect physical activity. So children wear activity monitors, and we track their changes over the course of the study.
Chris Modlesky:
We're enrolling children who are five to 11, who have ability to ambulate independently. And it's a six month intervention, and then there's a six month follow up. And there's a lot of testing. We do many, many different things. So there's a very scientific component to it. But we also hope that there's a fun component where the children and the families interact with the students and the staff who are on the front lines and actually collecting the data and making the study work. I think they really enjoy that.
Rachel Byrne:
So when you're thinking about vibration ... because obviously, people might have thought, hang on a second. That's not really something that I would have included in an exercise routine. I'm sure people have potentially seen the vibration plates. Is a hypothesis or thinking behind it that it's increasing load, or what is the thinking behind why vibration might be beneficial?
Chris Modlesky:
Yeah. I think it depends on the type of vibration. The vibration that we use is a very low level. We think it may be creating some local changes, so activation, potentially activating the muscles, so making the muscles work a little bit or stimulating them to contract. And we're thinking that maybe that will increase the size, also the quality of the muscle. So if there's activity, the muscle's active, then it's using fuel that's in that area. So fuel would be fat. So if it's using fat to contract, then that would be good because it would improve the quality of the muscle and long-term, potentially reduce your risk for developing chronic diseases.
Chris Modlesky:
But yeah, there's a local effect, and then we think there may be a central effect where it's potentially affecting the central nervous system and improving balance and coordination. And there are some studies suggesting that it does, and not just with cerebral palsy, with other conditions. So we're optimistic.
Chris Modlesky:
And then there like I said, there are different types of vibration. Some are really more vigorous, and they probably have much more stimulation, a greater stimulation of the muscle. Unfortunately, there are studies coming out, but there need to be studies where you have good controls. So you may have a study, and it doesn't have a control group, and so I don't know if it's the vibration or if it's something else. And usually the vibration is coupled with something else. It's not just vibration. It may be some sort of therapy. So is it the therapy or is it the vibration, or is it a combination? So a lot of the studies that have come out haven't been able to tease those things apart.
Rachel Byrne:
I think that's the tricky thing when we're thinking about cerebral palsy and researching cerebral palsy. The quality of research really needs to be there for us to be able to find these definite answers, I suppose. So question for you. You said five to 11 year olds, and it's over six month time period. Is this an intervention that they're then doing at home, or are they having to come in to UGA to do this? What does it look like in that regard?
Chris Modlesky:
Yeah, they come to UGA. We screen them ahead of time. We talk to them, talk to the families, the parents, and the child. And then if they qualify and they seem to be good candidates, then they'll come in and they'll sign a consent form, and we do all of our baseline testing, which is a lot. It's a lot of testing, but we're trying to find as out as much as we possibly can. And then the families will take the vibration platform home, and the child stands on it every day for 10 minutes, and they do that for six months. And they'll come back for testing at one month to see if there are any short-term changes, and then they come back at six months to see, after the full intervention, if there are changes. And then we look a month after that to see if there are positive changes, are they sustained in a one month period? And then we look again at six months and see if there are the longer term sustaining of the changes that we hope to see.
Rachel Byrne:
For those watching, do you have to be local to your area, so local around Georgia to do this? Or can you be from other areas to participate?
Chris Modlesky:
Well, it would be great if you were local. It would be easier. Initially it was a lot easier for us. But we've done a lot to make it so anybody could participate in the study. So we have a hotel that the families can stay in. Usually at each time point, you'll be here for two days. So you may come on a Friday, fly in on a Friday, stay at the hotel. And then in the morning, we'll start our testing. And then you stay in the hotel again and then come back for testing in the morning, and then fly out. Some will do if they come early enough, some testing on Friday, just to kind of make the days a little shorter. And we actually just got approval from the NIH, or we're in the works of that, where we may be able to ... We weren't able to pay for flights, but I think we're going to be able to contribute or pay for flights up to a certain amount. And we already give a travel stipend, so there is money to help with the families.
Rachel Byrne:
Well, I do think for anyone listening, if your child is between five and 11 and they are ambulatory and can move around and do those different things independently. Is that right, Chris?
Chris Modlesky:
Yes. Yeah, because some of the tests that we do require the child to walk, and we want to look at their gait. And so yeah, they'll need to be able to walk independently.
Rachel Byrne:
So if you do have a child that meets that category, I think this is a wonderful opportunity because as you said, obviously supported to actually participate in any of the assessments, but the fact the vibration plate actually goes home with you, and for the majority of the six months, it's actually getting done at home. And it is 10 minutes a day, but really, in the big scheme of things, that's actually quite a minimal time. And I think one of the biggest things you're finding is that kids are actually finding that it's fun and they're finding that it's enjoyable.
Chris Modlesky:
Yeah. We're trying to make it where it's an experience, so we have a local mascot, or a mascot for the university, Hairy Dawg. We've scheduled some appointments where he comes and he'll meet with the children. And we would like every child to meet him because it's fun to do that sort of thing. And then we also have a scavenger hunt. So families come, and then we give them a little description of the university places they can visit. And so they have to go out and find them, and it's a good way to find out about the university. And our football team didn't win the national championship this past year, so it's good that they can see those sorts of things.
Rachel Byrne:
So we've got lots of questions and comments coming in, and I think some of them are really interesting. One asks, could someone send me the name of the study with the vibration plates? Yes, absolutely. Michelle, we will send that to you. And we'll make sure all the links to how to reach out and how to contact Chris and his team is there. You can also go to cpresource.org and look at our clinical and research trial section.
Rachel Byrne:
We've had other people asking a little bit about 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.
Rachel Byrne:
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 Modlesky:
Therapy is not working anymore. Well ...
Rachel Byrne:
Yeah. And I think this is something good, I suppose, when we're 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 Modlesky:
Yeah. That's so true. And so, you could try to find some other therapists 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. 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 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. But until we finish the studies, we can't move on to other studies.
Chris Modlesky:
So 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 really 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 Byrne:
Yeah. I think it's such a great point when we are thinking about, how [inaudible 00:32:53] the community involved in research. 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. Private foundations like ourselves and like others, they're too small to try to fund those huge studies. I think we are great for looking at funding pilot projects and [inaudible 00:33:34] ideas, but 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.
Rachel Byrne:
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 those out for you. But just wanted to say a huge thank you for joining us today.
Chris Modlesky:
Thank you.
Rachel Byrne:
Yeah. Look forward to hearing the results of this study.
Chris Modlesky:
Yes. So do I.
Rachel Byrne:
Amazing. Thank you.
Chris Modlesky:
Thanks for having me.
Rachel Byrne:
[crosstalk 00:34:29].
Chris Modlesky:
I really appreciate it.