← Living Well with Multiple Sclerosis
Living Well with Multiple Sclerosis
The latest research in exercise for MS with Dr Robert Motl | S6E18
00:38:21
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- [00:00]
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People who have low levels of lifestyle physical activity have more relapses, have more lesions, they have greater deterioration of white and gray matter. You know, they have a faster rate of disability progression over time.
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Welcome to Living well with Ms. This show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Help others discover Living well with Ms. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let's meet our guest.
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C
So, hi everyone, and welcome to this episode of the Living well with Ms. Podcast. My name is Veronique Gautier Simmons, and I'm one of the facilitators of Overcoming Ms. With a special interest in exercise and physical activity. So I'm really, really delighted to welcome our guest today. Professor Motto. So thank you so much for accepting our invitation.
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A
Yeah, it's really an honor to be here.
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C
Thank you. So you are professor of Kinesiology and Nutrition and also professor of Rehabilitation Sciences at the uic, which is University of Illinois, Chicago. You are internationally known as a top researcher in the field of exercise and physical activity for people living with Ms. So as a person living with ms, I want to personally thank you for all your work because that is so important. It really makes a huge difference. So thank you. And you've been very, very busy because you have authored so over 650 and maybe closer to 900 research articles, is that correct?
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A
That's correct. We've been very busy. And I emphasize the collective we. It's a team. It's me, it's colleagues, it's postdocs, graduate students, undergraduates. It's collectively a large number of individuals who contribute their life and soul to this work. And it is. I mean, I appreciate your appreciation for the work we do because the people with Ms. Who we do research on really provide unique meaning and value to us as researchers because it gives us something really important to shoot for and really meaningful to shoot for. Because a lot of times I think people do research, but they don't really have a why. And people with Ms. Give us a big why in what we do, and that that powers us every single day. Okay.
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C
And actually, that was one my first question. Why this interest in ms? And what I mean is, did you find something in your earlier research? Do you find something where you thought, oh my God, I need to research that this sounds really interesting. And what is it that you found?
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Yeah, so that's a great question. And I get asked that question all the time. I think a lot of me finding Ms. And exercise was Ms. And exercise finding me, if you will. So I had completed a large number of trials for my dissertation work that were looking at single bouts of exercise and how they affected spinal reflexes and people who have anxiety disorders. Okay, that sounds like a long way off from multiple sclerosis. So I did these studies, and all eight of them for my doctoral dissertation failed to demonstrate what I was interested in showing. But what happened is I always kept in the back of my mind, know, our results. And. And I also had this really voracious appetite to read. And so I go to the library every day and pick up journals and just random journals and read things. And so one day I was reading this article about spasticity in people with multiple sclerosis, and they were using a drug called baclofen, which is a GABA agonist, to reduce spasticity, and they were measuring spasticity with the exact same techniques I was using in my dissertation research.
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C
Right.
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So I thought, wow, I'll write a grant to the National Ms. Society of the United States to look at bouts of exercise to manage neurophysiological processes involved in spasticity and people with multiple sclerosis. They funded it. Oh, my gosh. It was like the greatest day in my life, right. To get a grant for something that you don't think anybody will fund. And really, it took off from there. And I. I will tell you that it really. And. And I mean this like, very sincerely. It really provided a lot of meaning to the research that I do. And, and working with people with Ms. Very closely in our research and, and helping to design some of our studies has really been one of the most valuable, rewarding experiences that you can have in your career. And I could tell you stories that we could go on for, like, the rest of the day, but we'll just leave it at. It's been really rewarding, and that's where it started.
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C
Okay, thank you. And what is the main or what are the key findings from your research? For someone who doesn't know anything about, you know, exercise and ms, what would you say? What are the key findings?
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That's a good question. I'm going to keep it broad, and then I'll dive into kind of what I think is a little bit more detail. I think the most important thing is that people with Ms. Need to know that exercise has profound benefits for a lot of the functional consequences, symptomatic consequences, and quality of life consequences. I think people with Ms. Need to understand the exercise is very safe. The adverse event profile and serious adverse event profile is very positive. It's no different from the general population. And then I think people with Ms. Need to understand that there are guidelines and very specific guidelines about the dose of exercise that people with Ms. Should engage in to safely accrue the benefits. So when I talk about the benefits, you know, we, we know that, that exercise has effects and beneficial effects on some of the most prevalent symptoms in Ms. So you think about fatigue as an example. You know, just about everybody with Ms. Will tell you I have fatigue in various degrees, some very severe. And there is a wealth of evidence that exercise is very effective at reducing fatigue in people with multiple sclerosis. Same thing occurs with depression. We know depression exists in, in, you know, 30, 40% of people with multiple sclerosis. And exercise is very powerful there. When we move into other things, like walking as an example, you know, that's the most obvious symptom of Ms. That is, people with Ms. Start to have a little bit of difficulty in their ambulatory capacity, and that transitions to canes and rollators and sometimes wheelchairs. And we know the exercise can, can reverse that loss of ambulation. And then, you know, some of the really important things I would say are quality of life and independence. So, you know, sometimes I think researchers underestimate the importance of quality of life and independence. But as humans, you know, our underlying spirit is to live a good life and to be able to do the things that we want to do on a daily basis. Right? Yeah. And, and we've demonstrated that exercise improves quality of life and it optimizes the ability to live an independent, high quality life where you're able to do things like maintain employment, you know, do simple things. Like in America, you know, we talk about basketball a lot. Go out in the driveway and shoot baskets with your kids. Right. Go take a bike, ride around the neighborhood with them. All of those things that are the little things that just mean so much.
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C
They do, they do, definitely. But I'd like to come back to a key definition. I think for me is you talk about exercise. Yeah. So exercise means it is structured and with a purpose. And over the last couple of years, there's been more and more people saying that we don't need to exercise, we just need to move and walk the dogs. They are not talking about people with Ms. For the general population, but this argument has slowly moved into the Ms. Community. And I work with a lot of people with Ms. I teach yoga and physical activity. And a few times people told me, but actually, it's enough if we walk. And I say, no, but what do you think? This is my answer, but what do you think?
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A
You're going to put me in between a rock and a hard place? So, you know, to be quite honest, we've pursued both research on structured formalized exercise, where, for example, you go to the gym and we'll ride a bike or a treadmill for a specific period of time at a specific intensity, or go lift weights. And we know that that is beneficial and we have prescriptive guidelines, and we can talk about those later. On the other side is this thing that we call lifestyle physical activity, that is being active in everyday life. And we actually wrote this paper. It was kind of a goofy paper, but it was lifestyle physical activity and ms, the new kid on the block, right? Like, you know, bringing lifestyle physical activity into Ms. What do we need to know? What do we need to do? And so we established this agenda to understand what do we know about levels of lifestyle physical activity? It is very low. People with Ms. Don't engage in physical activity as part of their life. I think that there are a number of reasons for that. We then looked at the variables that explain that from a theoretical behavior change perspective. We also studied how low levels of lifestyle physical activity are related to outcomes in Ms. So people who have low levels of lifestyle physical activity have more relapses, have more lesions, they have greater deterioration of white and gray matter. You know, they have a faster rate of disability progression over time, higher fatigue, depression, you know, all of, all of those things. And so then we started to say, okay, well, how do we change lifestyle physical activity? So we, we have spent about, you know, 15 years developing these interventions that are called behavioral interventions. And what we do is we teach people skills like self monitoring, goal setting, tracking, all of these different behavioral skills. And then we also help them identify opportunities to be physically active in everyday life. So, for example, people who are still working, oftentimes we work in close enough proximity that we can just get up from our desk and walk over to a coworker's desk. It might take two minutes and have a quick conversation instead of sending an email, and then we walk back, and that's two minutes. That's lifestyle physical activity. That's just walking. And if you can do that, you know, 10 times a day, what people don't realize is that adds up to 40 minutes of physical activity. And this walking, this physical activity can have great benefits. And so we've developed these interventions to teach people these skills. They're very successful at changing physical activity during three to six month periods of the formalized intervention. Then we take the intervention away and all the coaching away and everything. And then we follow them six months later. And people still maintain that physical activity level that they learned because we've taught them skills, strategies, techniques to be more physically active and they've learned how to put physical activity in their life. And so they can maintain it, it's easier. And as a consequence of that, we've demonstrated that this approach reduces fatigue, reduces depression, it improves processing speed, it improves walking performance and quality of life. But to me, the real bang for the buck was we did some research where we, we did a DEXA scan to get someone's body composition. And it's a very objective measurement of body fat, lean muscle mass and bone. And we were able to demonstrate that this intervention reduced body fat, increase lean mass and increase bone mass. And that's not something that you can influence the machine to do better at. It's just, it's like an mri, it's biological data. And it really convinced us that this approach works. So we've really spun this approach off. And I would say the good thing is people with Ms. Have two approaches, two choices, right? They can engage in exercise or they can do this thing that we call sitting less and moving more, that is trying to reduce the amount of time that you spend sitting or laying and, and not moving and increase the amount of time you spend moving during every day. And you know, really one of the next steps is we want to combine this, right? Because what happens sometimes is people will engage in exercise and they drop their lifestyle physical activity, right? And it's a compensatory response like, I'm doing more here, so I have to save energy here. And we get it and we want to know, well, could we actually deliver an intervention where people start to exercise more and more and engage in lifestyle physical activity, and does that have a even greater benefits?
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C
But what about the body adapting? So once you do more, the body adapts, so you still need to keep doing more. And how far, how many hours a day? Well, when is the limit?
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A
Yeah, that's, that's a good question. You know, I don't know that we know what the limit is, right? We have thresholds or ideas of how much people should increase to obtain benefits. So, for example, a person with MS, if they can get an extra 1500 steps per day, five days a week. That's enough to have a meaningful effect on their physical activity levels. If they can get closer to 3,000 steps per day, we see even greater benefits on their multiple sclerosis. You know, but being cognizant that, you know, there's only a certain number of hours in the day, I think one of the things that we're working on right now is looking at how people take those steps during the day. Right. So one of the things that we're working on is this idea of step based metrics and looking at the speed at which you walk during everyday tasks. And the idea being that we don't necessarily have to have you do more than 1500 steps per day, but rather if we can get you to do 30 minutes over the course of the day and each of those minutes be at a faster walking speed, that actually has greater benefits, progression, accumulation. And that's something that people can always bump up a little bit, right? Like, uh, so it, it's complicated, it's nuanced, um, and there's no clear guidance right now on, on how much. But I would say shooting for 1500 steps per day over what you're currently doing is good. Shooting for 3,000 steps per day over what you're currently doing is even better. Should you go past that, uh, you know, just listen to your body. It will tell you whether that's good or bad.
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Have you signed up to the new Overcoming Ms. App? If not, download the LiveWell Hub in your app store and join the Overcoming Ms. Community. Get support, find connections and feel motivated to live well with Ms. Download the LiveWell Hub today.
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C
And you've described before the exercise as disease modifying behavior. So how does regular exercising compare to current dmt? Or can we, or should we?
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A
Oh, that's a, that's a very loaded question. So we, we, you may have seen, we wrote this paper to the Multiple Sclerosis Journal. We were invited to to make the argument that exercise is indeed a disease modifying behavior. What we did is we looked at how you establish medications as a disease modifying behavior. They oftentimes focus on lesions, relapses, progression of disability, as well as neural performance outcomes like walking speed and cognitive processing speed. What we did is we adopted those same metrics and went and looked at the exercise literature and to see if exercise reduced those same measures that we would use to approve a regulatory medication. What we found is that exercise is associated with a lower burden of lesions. The lesions are smaller, and the number of lesions is lower. That exercise is associated with about a 27% reduction in relapse rates compared to control. And that's important because that's comparable to the very early classes of disease modifying therapies that were showing about a 25% reduction. Now the newer classes are more powerful. We provided data that exercise is associated with a flat disability trajectory, whereas those who don't exercise have an increase in disability. And the exercises associated with beneficial effects in walking speed by the time 25 foot walk and processing speed by the simple digit modalities test. This suggested to us that exercise indeed has disease modifying effects. Now that should not mean that you should stop your disease modifying medication and replace it with exercise. What I think it means is that you should be on a really good disease modifying medication program that you develop with your neurologist and that you can add exercise on top of that and expect there to be even more powerful benefits than just your disease modifying medication alone. You know, but there are still a lot of questions to figure out in this like over a 10 year period of time what happens. Right. You know, because we still have this idea of smoldering Ms. And underlying, you know, low level inflammation that, that, you know, maybe exercise helps with that. We, we got to figure that out.
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C
Yeah, actually that's what I was going to ask. Ms. Is both degenerative and inflammatory. And do we know which part exercise influences or is just both?
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And I guess I would say when we look at the evidence of exercise and its effects on, on kind of the common measures of inflammation that we, we obtain from, from blood draws, which are serum, and they don't necessarily reflect what's going on in the brain. We don't really see a lot of effective exercise on these serum biomarkers of inflammatory processes. When we look at exercise and we look at serum biomarkers of neurotrophic factors and neurotrophic factors are the biological factors associated with, you know, loss of tissue like gray matter tissue and neurodegeneration. We do see the exercise is associated with an increase in particularly brain derived neurotrophic factor. And so that would be suggestive that exercise exerts more of an effect on neurodegeneration than it does on inflammation. The one thing that I want to really point out though is that in these studies the majority of people are on a disease modifying therapy. And so that's already suppressing the amount of neuroinflammation that you're going to see. And so it may be hard to imagine that exercise could actually show an effect in the context of these medications. So I wouldn't rule it out.
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Right.
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I think we have to get better tools to understand neuro inflammation and then apply exercise to that paradigm to understand if there is a neuroinflammatory reduction with exercise training.
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C
And what about exercise and the brain? So I think you done research in this area as well.
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A
Yeah. So, you know, a lot of what we've studied has, has focused on different nuclei or specific, you know, areas of the brain that are associated with, with very specific functions. So for example, we focused on the thalamus and as an area of the brain that's associated with processing speed and not just the volume of the thalamus, but how the thalamus is connected to other areas of the brain that are associated with cognition. We've also studied the basal ganglia. The basal ganglia are areas of the brain, the caudate, putamen, globus, pallidus, that are associated with movement related patterns and also their connections to other areas of the brain. What we're showing in this literature is that exercise is associated with larger volumes of the thalamus of the basal ganglia structures and is also associated with better connectivity. These hubs of neurons that are very important for regulating cognition or mobility are developing stronger, better connections with other regions of the brain to form a better system for regulating cognition or regulating movement mobility. We're seeing these great changes. I would say one of the most important studies in this area actually wasn't done by our group. It was a group out of Italy that studied balance based training and connectivity in the cerebellum. They just show these really wonderful changes with balance training, suggesting improvements in balance and that that was really accounted for by connectivity in the cerebellum, which is an area associated with balance and motor control. It just a really, really strong, well designed study. And so this is something that we focus on every day now in our labs is trying to understand exercise in the brain because I think for two reasons. One is I think people with Ms. Want to know more like can I exercise and help restore brain and prevent brain loss? And I think that neurologists and other healthcare providers, they really want those data to show that exercise is doing something within the brain. So they can say, hey, you should exercise not just for your fatigue or your depression, but, but also exercise because it will help to produce brain health, improve the structure function of the central nervous system.
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C
You said last year that exercise activates the central nervous system, the peripheral nervous system, the endocrine system, the Skeletal muscle system, the cardiovascular system. And it does so in a very integrative and systematic manner. And by repeatedly exposing yourself to bouts of exercise, all of these systems adapt in an integrated manner. They learn how to work better, they grow stronger, they grow better. And I think as a person living with ms, this is what I need to know in a way that when I exercise, everything is improving. So in a way, the details, you work on it and you can explain, but it's just nice to remember everything is going to be better with exercise. But are there some people with Ms. Who don't benefit from exercise or maybe benefit less?
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A
Yeah, that's a great question. I'm glad you found that quote, because that is something that we live and breathe by, this notion that exercise is the only stimulus that activates every system in the human body in a systematic, integrative, organized way. And literally every time you activate it, it's a stressor to those systems. And those systems in response to stress learn how to adapt and work better together. And that is just the beauty of exercise. There's nothing else like that. When, when I think about, does exercise benefit everybody equally? That's getting into this whole idea that we've been working on lately called response heterogeneity. That is, if I give 10 people the exact same exercise prescription, will all 10 show the exact same adaptations? The answer that we're learning is no. Okay. That is that some people with a stimulus will maybe show a little bit of worsening, some people will show no change, and some people will show great adaptations or benefits. So one of the keys in this is learning how to create precision based prescriptions for people with multiple sclerosis. And what that relies upon is trying to understand characteristics of people with Ms. And how those characteristics portend how they might respond to one program versus another program and make sure that we match the program optimally based on those characteristics. That's like the holy grail that we're working on over the next 10 years. And it's really complicated. It's the same thing that's happened, if I can for a second in the world of cancer and medications for cancer, is that they used to have this kind of one size fits all approach where you have cancer, we're going to do this medication. And then they saw that some people get better, some people don't change, some people get worse. And then they've started to identify these biomarkers that say, oh, if you have this biomarker, we're going to give you this medication. Because everybody who has this biomarker and receives it gets better. And that's what we have to do with exercise and Ms. Is figure out those biomarkers.
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C
So that's how you see the future of exercise therapy. So who do you think would be in charge of prescribing this? Do you think the neurologist or the GP would need to be involved?
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A
That's like a 10 hour discussion as well. So this has been something that we've been working on quite a bit is trying to understand the promotion pathway. And so we, we started about 10 years ago asking people with Ms. Who they want their exercise prescription, guidance, promotion from. And you know, to, to my chagrin they told me neurologists and they were very clear that it wasn't like a, a kinesiologist, exercise professional such as myself. They, they really said neurologist and then you know, as we press them a little further then they, they opened up to well, maybe the nurse practitioner or you know, other, other professional in the neurologist's office, then maybe the PT and ot. And then lastly someone like yourself. So you know, like, then the next question we went to is we went to the healthcare providers, particularly the neurologists, and said, what do you think? Do you think you're the right agent of change? And they said, yeah, absolutely, we can promote exercise, we just don't know what to tell people. Right. And the nurse said the same thing. PTs and OTs have more information to tell people, but they're still not 100% equipped with the exercise prescription. Because PTs and OTs. It's really a clinical practice to restore function through very specific movement based systems and parameters. And it's not a more globalized thing like helping individuals engage in exercise. So what we learned, if you will, is that there's this convergence. People with Ms. Want the healthcare providers, particularly the neurologists, the neurologists are willing to do it, but we have to create the knowledge base and the system for this dialogue, this interaction and everything. So we're working on that right now. That's something that some of my colleagues are working on, is developing these kind of scripts and trainings and things along those lines. The one thing that we do have that's, that's already ready to go is we already have the toolkit. So both the neurologist and the patient said I need a toolkit, like you got to give me something that I can go exercise with. We've created that and we have the full program to go with it. That's, that's Done. Now we have to figure out how to get people to that point.
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C
So your, your latest study I think is on the mood and exercise training study for Ms. Y. Can you tell us about that a little bit?
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A
Yeah, absolutely. It's one of the most important studies we're doing right now. What we realized when we looked at the literature on exercise and depression in people with Ms. Is that there wasn't a single study that actually recruited people with major depressive disorder, people who have a clinical diagnosis of depression. We wrote a grant to the Department of Defense in the United States, which sounds odd, but they have a congratulation mandated research program that funds research for diseases like Ms. And they funded this study to deliver exercise training as a way to treat depression in people with Ms. Who have major depressive disorder. And so we work very hard with our neurologists in Chicagoland area and a little bit beyond to identify people with Ms. Who likely meet criteria for having major depressive disorder. We do very extensive screening to make sure that they meet clinical criteria for major depressive disorder. We then bring them into the lab and do a lot of testing with them. Mood testing, cognitive testing, other symptoms, fitness, the whole baseline gamut. And then we give them one of two evidence based programs and they do these programs at home, but we support them remotely through coaching from our lab. One of the programs is structured aerobic and resistance exercise that they do three days per week and they progressively move from a very light short duration up to meeting guidelines within six to 10 weeks. And then they maintain that over the remainder of the 16 week period. The other protocol is range of motion. So one of the things that we find is that people with Ms. Are very tight and restricted and they lose range of motion and that has all sorts of secondary complications. So we focus on that as another modality and we have a program, we give them all the equipment they need, we give them manuals, we give them the logbooks, calendar is everything they need, and then we coach them remotely. So one day a week they get on a zoom with our behavioral coaches who are amazing people, really highly trained to work with them on their exercise program, their behavior change and sticking with it and adherence and complying. And so we're examining how all those baseline parameters change after the intervention. And then we follow these people up four months afterwards as well where we've stopped giving them coaching. But they still have all the materials and we're hoping that they're still doing it. And what we hope to demonstrate is that these programs are effective for reducing depression. In individuals with major depressive disorder who have Ms. And if so, this would provide the first class one evidence that exercise could be prescribed for treating depression in Ms. And that would be a game changer of a study.
- [34:32]
C
That's brilliant. I saw on the website of the exercise Neuroscience research laboratory that there are so many different projects going on. Could some of our listeners volunteer on this program if they qualify? I mean, there are so many different topics.
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A
Yeah, we study lots of different things. I mean, some days I wonder how we do it all, but we do a lot of different things. And our lab is very big. We have lots of dedicated people. And so, yeah, if you can connect people to our lab, if they go to Google and type in University of Illinois at Chicago, an exercise neuroscience research lab, they'll find us. And there's a link on there for research projects. And, you know, we've purposefully designed these projects to be things that anybody anywhere in the United States or the world for that matter, could participate in. Because, you know, we really, one of our missions is to create a global movement of exercise in Ms. And particularly because when you look at what's being done, it's largely done in large industrialized countries. And. And there's lots that a lot of people who are in places that need this evidence. And so we're trying to create that as well, but that's a side point.
- [36:01]
C
Thank you so much. Again, thank you for all your work. Is there anything else that you would like to. To add to this conversation? Anything else that you would like to share?
- [36:15]
A
Yeah, I think that we're learning more and more every day that living your best life involves doing things like exercising, eating well, diet, lifestyle. And so I would encourage people that it doesn't have to be exercise, but exercise is probably the most potent of these agents. But as you start to change your exercise behavior, think about doing some other things, like maybe trying different ways of eating and things along those lines and trying to get a little bit better sleep quality. And I think it's the totality of those things that will really make the biggest difference in the end. But exercise first.
- [36:57]
C
You are describing the Overcoming Ms. Program that is actually holistic and includes exercise and stress management and diet and mindfulness. And so, yeah, it's a whole new lifestyle. Thank you so much. That's very motivating and I wish you a wonderful rest of the day. Thank you so much for talking to me. Thank you.
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A
Thank you.
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B
Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode, and please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mav Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share? Email us@podcastovercomingms.org we'd love to hear from you. The Living Room with Ms. Podcast is for private, noncommercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.