Webinar highlights – Physical activity with Dr Robert Motl | S7E20

Summary

Podcast Summary: Living Well with Multiple Sclerosis – Webinar Highlights: Physical Activity with Dr Robert Motl (S7E20)
Date: September 24, 2025
Host: Overcoming MS
Guests: Dr. Robert Motl (University of Illinois Chicago), Frances Loy, Duarte Valente, Heather O’Neill (facilitator)

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Episode Overview

This episode focuses on the role of physical activity in managing Multiple Sclerosis (MS), exploring both the scientific understanding and real-life experiences. Moderator Heather O’Neill guides a panel discussion with leading researcher Dr. Robert Motl and OMS community members Frances Loy and Duarte Valente. The conversation covers the benefits of activity at all levels of ability, practical ways to start and maintain a routine, overcoming barriers such as fatigue and mobility challenges, and the motivational power of finding your “why.”

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Key Discussion Points & Insights

The Science: Physical Activity's Broad Benefits for People with MS

• Physical activity benefits people with MS on every level—from reducing inflammation at the cellular level to improving brain health, cognition, fatigue, mood, and participation in society.
  • “We talk about physical activity in the context of ‘exercise is medicine’ in MS, because there is really no other behavior that you can engage in that has such broad-based evidence for benefits.” (Dr. Motl, 07:58)
• Physically active people with MS show:
  • Lower inflammation and higher nerve growth factors (neurotrophins)
  • Larger gray/white matter in the brain and stronger inter-brain connections (MRI evidence)
  • Better cognitive speed, learning, memory, balance, and walking
  • Less fatigue, depression, pain, and anxiety, plus better sleep and higher quality of life
• Physical activity slows or prevents MS progression:
  • “In those who were physically active, their disease didn’t progress, it stayed flat. But in those who were inactive…it slowly progressed.” (Dr. Motl, 37:02)
• Reduced relapse rates:
  • “Relapse rates actually went down by 25% in those who were exercising versus those who are not exercising—which is the same magnitude as many common disease-modifying therapies at the time.” (Dr. Motl, 18:19)

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Finding Your “Why” (Motivation)

• “The first step…is we always talk to them about their why. The range of reasons is very broad…when people have that why, particularly when it’s meaningful for them, that is such strong motivation.” (Dr. Motl, 09:15)
• Frances was motivated by his family—wanting to stay active with his children. Duarte emphasizes the desire for independence as his core “why”.
• “When you hear those words [MS diagnosis] for the first time…you have to work so hard in mindset and have confidence. As Rob says, start small, but those marginal gains all add up over time.” (Frances, 20:59)

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Real-Life Experiences & Successes

Duarte Valente

• Follows the OMS program, no relapses in four years
• Gradual, incremental approach: “Start with a program that fits your level. Step by step, it’s an incremental thing. There’s actually no rush.” (Duarte, 11:03)
• Enjoys yoga, running, cycling, surfing, and group classes
• Becoming social and enjoying activity, not just focused on performance gains

Frances Loy

• Ex-endurance athlete, diagnosed in 2021
• Initially motivated by family, later by his own sense of identity and achievement
• Has completed the demanding Mallorca 312km cycling challenge post-diagnosis—“My bike fitness is far stronger now than it was before, even before my diagnosis. We don’t have to reduce our wish list.” (Frances, 15:09)
• Started CrossFit to focus on strength, now a semi-finalist in the adaptive CrossFit Games
• Emphasizes the power of community, accountability partners, and inspiration from others overcoming diverse challenges

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Starting Small & Adapting for All Abilities

• Everyone can benefit—regardless of ability or disability:
  • “Being physically active has these benefits from cell to society across the spectrum of disability…We’re not just talking about elite athletes. This benefits everybody with MS.” (Dr. Motl, 24:06)
• First-ever major exercise study in MS used a stationary Schwinn Aerodyne bicycle (which uses both arms and legs, and keeps participants cool and safe).
• For people with greater mobility impairment:
  • Seated exercises (arm/leg steppers, resistance bands, even using canned vegetables as weights)
  • Focus on strength to aid independence and reduce fatigue
  • Gradual increases: “Don’t try to go out and do 30 minutes at once. Go for a 1-minute walk and see how your body responds…success starts with these really small bouts.” (Dr. Motl, 42:53)

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Fatigue: Challenge & Paradox

• Counterintuitive benefit: Movement can reduce fatigue in the long run, though it may feel draining at first.
  • “My mantra is you need to spend energy to get energy. I feel worse if I don’t exercise.” (Frances, 27:49)
• Both Duarte and Frances experience less fatigue and better daily productivity with regular morning activity.
• For those with intractable fatigue:
  • Start with energy conservation and pacing strategies
  • Once balanced, slowly introduce gentle activity, allowing the body to adapt over time

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Safety and Exercise Types

• Reduce fall risk:
  • Assess both personal risk and the exercise environment
  • Use devices (canes, walkers) as needed
  • Safer choices: recumbent bikes, seated steppers, aquatic exercise (though evidence is not as strong as for land-based activities)
  • Home adaptations: Walking in hallways, holding onto furniture
• What type of exercise is best?
  • “The best exercise is the exercise that you’ll do.” (Dr. Motl, 34:19 & 45:19)
  • No single modality: Benefits for aerobic (walking, cycling), strengthening (bands, machines, weights), stretching, and balance exercises
  • Experiment to discover what you enjoy and will repeat
  • Short bouts add up; does not have to be 30 minutes at once

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Mindset, Enjoyment, and Community

• “Don’t compare yourself…these stories are meant to inspire, not to create anything else…hopefully they generate some ideas, open some doors, or even start a friendship.” (Duarte, 41:16)
• Find accountability partners: Community support, exercise buddies, or online platforms help maintain motivation and consistency
• “Just enjoy it. Do it for pleasure—don’t see it as a chore. Be creative and solution-focused.” (Frances, 46:20)

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Notable Quotes & Timestamps

• Dr. Robert Motl (07:58): “There is really no other behavior that you can engage in that has such broad-based evidence for benefits is physical activity.”
• Dr. Motl (18:19): “Relapse rates actually went down by 25% in those who were exercising versus those who are not exercising.”
• Frances Loy (15:09): “My bike fitness is far stronger now than it was before…we’re really still capable of doing hard things.”
• Duarte Valente (11:03): “There’s actually no rush…having that mindset of no rush, actually I started to love it quite a lot.”
• Dr. Motl (42:53): “Don’t try to go out and do 30 minutes all at once. Go for a 1-minute walk…see how your body responds.”
• Frances Loy (27:49): “You need to spend energy to get energy. I definitely feel a different person when I come out of the gym.”
• Dr. Motl (45:19): “The best exercise is the exercise that you’ll do.”

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Recommended Resources & Advice

• Start small, build up gradually; success comes from consistent small steps
• Creativity counts: Adapt activities to your environment, needs, and abilities
• Don’t compare yourself to others; focus on personal progress and enjoyment
• Utilize community support: Accountability partners, local groups, OMS resources
• It’s okay to break up activity into several short bouts across the day

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Segment Timestamps

• [02:52] – Dr. Motl’s research background and overview
• [10:31] – Duarte’s personal experience and incremental approach
• [13:19] – Frances’ experience & athletic goals after diagnosis
• [18:19] – Research on relapse reduction through exercise
• [22:27] – Exercise adaptations for all levels of ability
• [26:05] – Strategies and stories for managing fatigue
• [30:32] – Exercise for those at high risk of falls
• [34:19] – Which exercise types are best; importance of personal preference
• [38:14] – Community advice for struggling to start or maintain activity
• [42:53] – The risk of “too much” exercise; importance of gradual build-up
• [45:19] – How to choose where to start with exercise

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Conclusion
Physical activity is a cornerstone of managing MS—backed by science, adaptable to all abilities, and deeply personal. Starting small, staying safe, and focusing on what you enjoy, while leaning on community support, can help everyone reap the full benefits, both physically and mentally.

Transcript

[A]

Particularly if you're a non active person, very small amounts of physical activity to begin with. Don't try to go out and do 30 minutes all at once. Instead, go for a 1 minute walk, go for one 1 minute bout and see how your body responds. And based on how your body responds, you might be able to, after doing that for a few days, do two minutes. And I know that that sounds ridiculous like one minute and then two minutes, but you know, the road to success starts with these really small bouts that you're successful with that don't compromise you, that don't result in you being so fatigued, so overwhelmed that the next day you just can't do anything.

[B]

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. Receive monthly tips and ideas about Living well with Ms. By signing up for our [e-mail] newsletter and now let's meet our guests.

[C]

My name is Heather o' Neill and I'm a facilitator with Overcoming Ms. And I'm a clinical social worker in private practice joining you from Denver, Colorado in the states. So in today's webinar we're going to be exploring the theme of physical activity for people living with Ms. And we're going to be welcoming Dr. Rob Model from the University of Chicago and overcoming Ms. Community members Frances Loy and Duarte Valente to the virtual stage for a panel discussion. We're going to hear about their experiences, sharing tips about physical activity, as well as answering some of your important questions. Physical activity has a disease modifying effect. It improves physical and mental health and it slows the effects of the illness. So we're going to hear more about that as we go along. Today, the Overcoming Ms. Program recommends working out or doing physical activity, vigorous movement for up to 30 minutes a day, eventually getting up to five days a week. So again, that kind of meets that 150 minutes you often hear as far as the general public as well. And some of you maybe aren't exercising or doing physical activity at all. And so hopefully you'll also hear today lots of encouragement and information about how it can be helpful to you with this disease. So without further ado, I would like to welcome Dr. Rob Mottle to the virtual state. Hi Rob.

[A]

Hi Heather. Thank you for welcoming me today.

[C]

Yeah, you can just Introduce yourself and talk a little bit about your background with the importance of physical activity in ms, of course.

[A]

So obviously. My name is Robert Model. I'm a professor in the Department of Kinesiology and Nutrition and the Department of Rehabilitation Science at the University of Illinois, Chicago. And I started really focusing my research on physical activity and people living with Ms. Over 20 years ago, was when we. We started our first research project and we were interested in studying the effects of physical activity on physiological markers of spasticity in people living with multiple sclerosis. That was really based on a lot of the work I'd done for my dissertation, for my PhD that had nothing to do with MS, but it turned out that it had a lot of relevance for Ms. And, and so we proposed some. Some research to the National Ms. Society in the United States. They funded the research, and boy, did that kick off quite a ride, because over the last, I would say, 22 years, we have done a lot of research looking at physical activity and its effects in individuals living with ms, from cells all the way to outcomes related to societal participation. And if you'd like, Heather, I'm happy. An overview of kind of what we found regarding physical activity from cells to society. Is that, is that within discussion?

[C]

Absolutely.

[A]

So first, what do I mean by cells to society? So what I mean by that is, you know, we all know that Ms. Involves some dysfunction of basic immune cells, and that dysfunction of immune cells causes lesions or scarring in the brain that causes a variety of other related brain changes, ultimately resulting in problems such as walking dysfunction, cognitive dysfunction through fatigue, depression, anxiety, all the way out, through quality of life and community participation, I. E. Maintaining employment, being able to go outside and take care of matters around the house, being able to go to community events. So that whole span from cells to all the way out to societal participation. And we've been doing research examining physical activity and its relationship across that whole spectrum. So some of the research that we've done has, has demonstrated that individuals with Ms. Who are more physically active have lower levels of inflammation based on markers that we record in the blood, and they also have higher levels of these neurotrophic or nerve growth factors, which are really important to maintain brain health. Okay, so we're seeing effects or relationships between physical activity, reducing the inflammatory problems in Ms. And increasing the nerve growth factors to maintain the brain integrity in Ms. When we move from that to markers of brain health itself, where we look at MRI or we look at optical coherence tomography, where we can look at the nerve cells in the back of the eye. What we see is people with Ms. Who are more physically active have larger gray and white matter volumes overall, based on mri, but they also have larger volumes of specific nuclei in the brain, such as the thalamus or the basal ganglia or the hippocampus. And why that's so important is because those are areas of the brain that are associated with cognitive processing speed or movement or learning new memory. On top of that, we see that more physically active individuals have better connections between areas of the brain. So for example, they have stronger connection between the frontal cortex or the area in the front of the brain and the thalamus. And that's important because it allows for better communication between information that's coming into the brain and has to be processed and outflow of that information for different tasks. When we move forward from there, we, we see that physical activity is associated with better cognition. So individuals who are more physically active have better processing speed, they're faster at processing information, they have better learning and memory, so they can take in information and store it and later retrieve it better. They have better walking performance, they have better balance and vestibular functioning. Then when we move into symptoms, people who with Ms. Are more physically active have less fatigue, they have less depression, they have less pain, they have less anxiety, they sleep better. So I hope I'm giving you the picture that this ultimately results in better quality of life. So we know people with Ms. Who are more physically active. They're having these benefits from cells to the brain structure, to cognitive and physical functions, to symptoms. And that's translating into this improved sense of high quality of life, A life that's really meaningful and valuable and really full of vigor and zest. And ultimately that translates into being able to participate more, to be independent, to be able to do all those things that I think sometimes we lose sight of as being really valuable, like simply being able to go and drive oneself to the park and sit in the park and enjoy a nice afternoon or you know, you know, some of us may not appreciate this, but the ability to go to work and work a full day, but you know, really physical activity, we oftentimes because we see these benefits from cell to society, we talk about physical activity in the context of exercise is medicine and multiple sclerosis, because there is really no other stimulus that and behavior that you can engage in that has such broad based evidence for benefits is physical activity. So pretty comprehensive, I'd say.

[C]

Yeah, thanks, Traub. I know for myself and I'm sure we're going to introduce Duarte and Francis, our community members as well. Knowing the why, right? Like, for me, okay, I know physical activity is helpful, but the why behind my Ms. Journey and like, okay, I'm more motivated to do it when I have some, some data and some reasoning. So thank you.

[A]

Yeah. And you know, when we talk about this, I'm glad you brought that up, Heather, because, you know, one of the things that we constantly do is try to create these programs to help people become more physically active. And you know, the first step in this is we always talk to them about their why. You know, why do you want to become more physically active? And you know, the, the range of, of reasons is very broad. You know, we hear things that are really meaningful. Like, you know, I, I had a person who told me this was like, you know, 15 years ago. Well, my son's getting married in six months and I want to engage in this program because I want to be able to walk with him down the aisle. And then this person came back and said, not only did I walk him down the aisle, but I danced with him at night. When people have that why, that is such, particularly when it's a very, very poignant and meaningful why for them, that is such strong motivation that it's really hard to get in their way and get them to not be physically active. Right?

[C]

Absolutely. Yes, absolutely. I want to introduce Duarte to the stage. And Duarte, if you could come on board and maybe share a little a bit about your experience with physical activity as well as successes and challenges.

[D]

Definitely. For me, exercise, you know, physical activity is medicine. And I'll tell you why in a second. The name is Duarte, actually the ambassador for the Circle in Portugal as well. I've been following the program oms program for about four years now. Close to four years now. Slightly no, you know, no relapses. I do see a lot of improvements. Even if I compare, you know, where I was five years ago versus now. And I'm very happy to talk about, you know, my favorite pillar of the program, which is, you know, physical activity. So starting with my why on the sports part. Yeah, that's definitely something important and something that I remind myself quite often. My why for the sports bar is just to be fully independent. You know, I want to keep my mobility, I want to keep my strength, I want to keep my independency from everything. So I do see the benefits from the physical activity directly impacting that part. Exercise helps me achieve that. So it's kind of a no brainer. Once you have the why Very clear stated out from the physical perspective. I started, you know, in a fitness level much different than what I am right now. And all of us will have that, right? We'll have different fitness levels. So we'll have to start with a program or some exercises that, you know, fit to your level. Right. So you don't want to be running a half marathon if you haven't been very active running, or you don't want to lift 100 kilos if that's not your weight that you can do. Right. So it's a step by step is an incremental thing. So definitely, you know, a challenge that I had in the beginning personally is that I was always very anxious to see results. I was always very like, you know, trying to very quickly get to some of the results. And that was a lesson that I learned that, you know, the gains, the incrementality gains will come as we do, you know, exercises and we move on to a next step and to a next step and to a next step. And there's actually no rush. You know, I having that mindset of no rush, actually I started to love it quite a lot. So I started to incorporate classes. You know, I go to yoga once or twice a week where it's a group setting. I started to do more activities, mixing running, cycling, going for surfing as well. So, you know, things in the water, things on the ground, things with a bicycle, just two different ones. And I really started to enjoy again this. This pillar which became my favorite above the foot. Foot is amazing. But the pillar for physical activity became my favorite because of that. I had my why I had my, you know, goal of being, you know, of keeping my independency. I started to do different types of exercises, you know, become more social as well. And that just made it so the beginning wasn't easy, but it's definitely worth it. That's my quick message here.

[C]

So, Francis, I want to invite you to the stage to just kind of share your story and kind of around physical activity and what that's like for you and successes and anything else you would like to share with us.

[E]

My name is Frances Loy and I'm from Northern Ireland. I'm a dad of three and I was diagnosed with relapsing Ms. In 2021. So I wouldn't like to labor myself as an athlete, I suppose. But prior to that I was really physically active and I did complete three endurance ironman races prior to the diagnosis and it sort of took a big hit out of the blue for me. If you like. Once I was diagnosed, I suppose what Rob spoke about, the why has resonated with me an awful lot. And it was very clear at the very start that the first big why for me was my family. I wanted to be really active with my kids growing up, and then secondary after I sort of conquered that mindset, it was because sport was such a part of my identity for so long. And so my journey, really, my diagnosis came out of the blue. I was on a Cyclone Honda with my cycling buddies in Mallorca, and I took a real bald throat infection and like most people do to sort of try and ignore on the sort of psych, work through it. And then one of the days in the bike, I just completely lost the feeling in my arms, developed some other sensory issues. So I knew something was up and naturally led to MRIs and all sorts of things. And then the Ms. Was mentioned by my neurologist. On that very day, I found out about the OMS program and I jumped on it cold turkey again. Like Jereta, I haven't looked back. So just in terms of importance, to motivate others and to share my achievements, it was really important to me. One of the challenges I've set was to go back to Mallorca. Mallorca has a challenge called the 31 2, and basically it's a bucket list race for cyclists where you cycle 312km around the island. And for me, it was important to go back and look the island in the face because that was the first place that I got my diagnosis in, and I was able to finish that race this year. So that was really important for me. And looking back, just being a sort of data geek, my bike fitness is far stronger now than it was before, even before my diagnosis. And for me, what it shows is that we're really still capable of doing really hard things, that we don't have to sort of reduce our wish list or think we're not capable of doing things, but we still really are. And then just as a way as well, trying to bring up new skills. This year I took up CrossFit, and this is completely new to me. I didn't really engage as somebody was part of sort of endurance and cycling and running that much in strength. So I knew how important strength is even as we age in terms of longevity. So I went to the gym, took up CrossFit for the first time, and I've worked really hard this year. I managed to make the semifinals for the CrossFit Games in the neuroadaptive category. And next month I'm heading out to Marbella and Spain and I'm going to give the neuroadaptive category a go there too. And for me, CrossFit has been amazing. It's completely new to me. It puts me completely out of my comfort zone. Last year I couldn't do one pull up without a band and this year I've up to six. And I'm now trying handstands push ups quite bad, but I'm trying them. And so I really do it out of a wish for neuroplasticity because we're constantly learning new skills, constantly being challenged in the, in the gym and again just showing that we're still really capable of doing hard things and really just inspire, inspire others on my kids, etc. One thing I wanted to say is that one blessing of this diagnosis for me has been enabled me to link in with motor people, motivating people all over the world who are thriving and really doing really well. And I've made friends with people in the UK I know I also have been on with Ross, who was lucky enough to be my accountability buddy after we met at the retreat. And we keep each other motivated daily, making sure we go to the gym and what we do is we try to motivate each other and hold each other to account, which I really, really enjoy. And as for the CrossFit in particular, they were really driving adaptive community. And I believe it's really motivating when you see people with other conditions. It doesn't have to be neuro conditions, but we've adaptive athletes who's really overcome all sorts of obstacles in their life. And for me that's really, really inspiring and motivating. I always feel that I feel better every day after I train. So that's just a wee bit about me and my journey.

[C]

I wanted to see if there was anything Francis, Duarte or Rob, if you wanted to say, based on what you've heard from the three of you so.

[A]

Far, to Duarte and Francis is really, you guys are really inspiring and it really, I think lends a lot of, of credibility to everything that we've discussed so far. Francis, your comment about I started being physically active because my family, that's one of the top reasons that we, we hear people say I'm being physically active because I want to be able to go out in the driveway and shoot baskets with my kids, right? I don't want to have to sit on the sidelines while they're growing up. And so I think that that really reaches the heart of many people who have Ms. And one of the things that, that Duarte mentioned, you know, we, we published a paper, you know, about 10 years ago looking at the safety of physical activity in people with multiple sclerosis. And one of the things that we focused on was relapse rates because there was this idea that maybe being more active would cause disease activity and relapse rates to go up. But surprisingly, what we found in this really big synthesis in the literature is that relapse rates actually went down by 25% in those who were exercising versus those who are not exercising. And that was the same magnitude as many of the common disease modifying therapies at the time. Now this isn't a recommendation to go off disease modifying therapies and use exercise, but it just shows that exercise has an effect on relapses. Which is, I think, Duarte, something that you mentioned as a very big benefit to you is you're not seeing disease activity since you've started to exercise on top of the other medication management programs that you've been doing. So I really just wanted to emphasize those two points because I think they're really good ones.

[D]

Yeah, sort of a follow up question actually, kind of for Dr. Rob, was there any particular exercise or, you know, just exercising actually that would have an impact on relapse?

[A]

That's a great question. None of these studies were specifically designed to understand modalities of exercise that might be more or less beneficial to relapse rates. And so I think the take home message from, from that and subsequent research that we've done is just being physically active, whether that's aerobic exercise, whether that's resistance exercise and strength training is beneficial. You know, we also believe that there's a dose response relationship between physical activity and many of the outcomes of ms, including relapse rates. What that means is that the more you do, the greater the benefits. Now that's not asking someone who's doing nothing to jump up to doing two hours of exercise a day, seven days a week. What that means is even the least active individuals can begin to experience benefits by doing just a little bit more. So this idea of a dose response suggests that all people with Ms. Can do a little bit more than they're currently doing to, to achieve the benefits of physical activity. And that as you get those, as you add a little bit more, you continue to experience benefits. So I think the simple answer is there's not a specific do this exercise, it will have this effect, but rather being physically active, engaging in a Variety of types of physical activity, whether that's exercise, whether it's sports, whether it's doing chores around the house, gardening. I mean, I love it when people tell me they garden as their form of physical activity because they're outside, they're doing something. Those are all beneficial for people with.

[E]

Ms. And I just encourage people to dream big, I suppose. I think I know personally speaking at the start, I lost an awful lot of confidence in those very early days. When you hear those words mentioned to you for the very first time, out of the blue, your mates might be thinking of going on a cycling hole and you're thinking, really, should I book that? That's six months away. What, what way am I going to be in six months? And you have to work so hard in mindset and have some confidence in yourself. You know, as Rob says, you start small, but those marginal gains all add up over time. So not for a million minds that I think three years ago when I got diagnosed that I was going to be doing the 3, 1, 2. But if you have it in your head that we're capable of still hard things, which we all are, and hard is different to each one of us, you know, and we all have to be on that journey, but we have to find our own heart, if you like, and aspire to be the best we can. But because we've this label doesn't mean we can't do it. I think that's a really important message for everybody on the call to hear. Just to dream big and to challenge ourselves. And we're incredibly strong as a community to motivate each other to do the best we can.

[C]

Yeah, I love that. Francis and I. When I first got diagnosed, I was a skier and I quit skiing because I had difficulty in my feet and legs. And over the last two years I was just like, why don't I quit skiing? I don't need to quit skiing. I can ski again. And it's been lovely. And so, yeah, like, don't diminish that. Like you can't do something like keep trying. So I love it.

[A]

Yeah, there's, there's a related theme that I think is a really important theme brought up by a few people.

[C]

Okay.

[A]

And it's along the lines of it's inspiring to hear of the guests achievements, but it's not possible for all ms'ers to run or walk. And on a related one, it's, you know, it's really impressive to see, hear these stories, but what about someone who's been in a very impaired State of mobility rather than kind of high performing athletes. And I think they're very important questions. And there was an earlier question, are the benefits of physical activity independent of disability status? Right. And so what we see is that being physical act physically active has these benefits from cell to society. Across the spectrum of disability, when you go from people who have, you know, what looks to be like no Ms. At all, all the way up to individuals who are, you know, a wheelchair or other kind of mobility related device on wheels. So we see this benefit across the spectrum. And you know, I think it's important to talk about those who are more impaired in other forms of exercise. So, you know, walking and running are not what all people can do. And you know, interestingly, one of the first and probably one of the best studies that's ever been done on exercise and Ms. Involved a bicycle. And it involved a Schwinn Aerodyne, which is a bicycle that you pedal with your legs and move with your arms at the same time. And it has a fan on it. And the reason why I bring this up is because the fan on it is blowing air on people to keep them cool. And the arms and the legs are there because some people who have weaker legs might have stronger arms, so they can compensate a little bit by using their arms. And you're in a seated position, so you're not having to get up and navigate in the world and run the risk of tripping, slipping, falling and injuring yourself. And so, you know, going back to something as simple as, as riding a stationary bike actually was the first evidence from randomized controlled trial published in Annals of Neurology for the benefits of exercise training in people with Ms. So there are a lot of other things that can be done. And you know, we've been doing a lot of programs for people who are in a wheelchair or don't really have good ambulatory function. So they get around in like a scooter. And we've been developing programs that involve using their arms as a form of cycling. So getting kind of one of these desktop bikes and pedaling it, but also getting things like cans of vegetables or what have you, it doesn't have to be complicated. And going through a variety of different exercises that they can do to increase their physical activity levels. And when we do these sorts of things, we see people begin to regain their strength. And as they regain their strength, they're more able to get out of their chair and move around and not be as fatigued. But it takes time, it doesn't happen overnight. It takes time, and it's something that we have to work on. So I just. I want to make sure that people realize that we're not just talking about the upper spectrum of mobility. We're not just talking about elite athletes. This is something that benefits everybody with Ms. And anybody can start a physical activity program and reap benefits, is my opinion. And there are data behind that.

[C]

There is. This might piggyback that. There's a question in the Q and A. My fatigue means that any minor activity, even typing or writing or trying to walk around my house, results in heaviness in my limbs. Is there any way of exercising that doesn't exacerbate that?

[A]

Yeah, I think, you know, I'll respond, but before I do, I'd like to hear Duarte or Francis talk about how they've managed fatigue in the context of their regimens for exercise and physical activity.

[D]

Yeah, sure. Actually, I think that's probably the best thing you can do to avoid fatigue. That what works for me the best is actually to exercise. It does feel a bit weird, you know, something that you're spending energy on or, you know, something that you're, you know, wasting your calories on. It's what prevents, you know, fatigue from happening in the first place. I. I do feel that, you know, if I go. I have an injury earlier this year on my left knee. I couldn't run, so I was trying to do other types of exercises, but Nephilo never, you know, was getting my heart rate so up as running does. And during that recovery time, I was actually feeling more tired, you know, more fatigued, because I thought at the time, and, you know, then later with the exercise kind of proved it, that I just couldn't exercise. So, you know, I was feeling more tired. It is tough at times, and it kind of. You need to motivate yourself or push yourself a little bit. You know, sometimes I go to the gym before work. You know, I'm just like, waking up in the morning, I'm, you know, feeling a bit lazy, you know, feeling. Feeling a bit tired. Don't really want to do it. But I know that after the gym session, you know, I know once I finish, even while I'm there, you know, my mood, my energy levels, my. Just everything kind of improves along the way. So it's sometimes that needed push, which can come, you know, from internal motivation, could come from this accountability partner, could come from the people around you. Just that little push, whatever source it comes from. Sometimes, yeah, it's all I need because I know that after the workout, I'm gonna feel much better. And for me it is the main thing that I do to prevent fatigue.

[E]

I just like to echo what Jeretta said. I suppose my, my mantra is that you need to spend energy to get energy. And I firmly believe that like Tourette, I feel worse if I don't exercise. So I start every day with training. It's non negotiable for me. And I definitely feel a different person when I come out of the gym compared to, I go into the gym and I'm far more productive for my day. Even my day at work, I'm far more productive. So. And sometimes I would get heavy legs too, but I try to, in my mind I say I'm flushing them out. So basically if it's sometime on the bike or if I try and do a run or something, it feels much, much better after the exercise than before the exercise. But definitely the mantra for me is spend energy to get energy. And I think that's counterproductive sometimes, but I think that that's works for me.

[A]

Yeah. And I do think it's really important to recognize it that there are some people with Ms. Who have really intractable fatigue that is so consuming and so life altering that when they do begin a physical activity program, oh man. I mean it's, it's really a, a rough road. And one of the things that, that we've been recommending for individuals with really severe intractable fatigue is to start out with kind of an energy conservation program that is looking at how to manage their fatigue through strategies where they're spending less energy or they're rebucketing their energy things along those lines. So as they begin to do that and they start to get in balance with the things that are causing them fatigue, then they can slowly begin to add physical activity into their life so that they're, they're not having this really severe effect of physical activity on top of their really severe fatigue at the same time, because they've kind of started get it the fatigue back into balance and they can start being physically active. And then what we see happening, which both Duarte and Francis brought up, is that people becoming more physically active after they've learned to manage the fatigue a little bit in the first place, start to have a reduction in their fatigue. That is, they start to accommodate to the physical activity and they actually get this reversal from it, causing them to have long term impactful fatigue for the rest of their day. To actually giving them more energy, more vitality, more vigor to be able to do more things. But that's a process, right? It doesn't just happen overnight. It's something that takes some time. I hope that helps address that a little bit.

[C]

This might be a good one for you. Rob is there, she says hi and thanks for the info. Is there any particular type of physical exercise that can be recommended if the risk of fall?

[A]

Yeah, you know, the last thing that, that you need is to become more physically active and then fall. So, you know, the first thing that, that we do is with any research program or recommendation that we, we take is we do a fall risk assessment. That fall risk assessment includes two things. One, looking at the individual to understand is that individual at fall risk. But the second area is to look at the environment that they're going to be physically active in. Because falls are a consequence of the person by environment interaction. Right. You're predisposed. You put yourself in the wrong environment, you fall. And if someone falls, although I know there are a lot of people with Ms. Who tell me, oh no, I know how to fall safely, I don't think there's any such thing as a safe fall. I think anytime you fall, you're at risk. So I think the first step is learning how or having that audit of yourself in the environment that you're going to put yourself in. I think the second thing is looking for exercises that become safe if you are at a very high fall risk. So for example, if, if you're at a high fall risk, going and doing squats, for example, if you want to do something like that, probably is not the right thing for you to do. Instead there are machines that you could sit on and do leg presses and have a comparable benefit. So choosing the right machinery can help when it comes to actually like aerobic activity. And someone who might be at fall risk if they want to do aerobic activity. There are things like I saw in here, someone mentioned arm leg recumbent stepper. So this is a seated device that your feet are on some pedals and you're pushing back and forth and your arms are moving as well. You're not going to fall on that. That's a very safe bike or a bicycle, you know, either upright or recumbent. If someone wants to walk, I would recommend that they really make sure that they're using a device that helps to reduce the likelihood of falling. So if you use a cane, when you go walk for exercise, use a cane. If you use a walker, bring the walker. If you use a cane, it also.

[C]

Feels like rob swimming too. Like things in the pool? Yeah, yeah.

[A]

Anything in the pool is seemingly good. The only thing I will say about that is the evidence for aquatic exercise is not quite as strong as the endorsement that we give to it a lot of the time. So, like, there's this huge endorsement. The evidence is a little bit lagging behind it compared to other things like walking or cycling. But when you go move, use your device, bring someone else with you to hold onto. You know what a great way to combine friendship and social interaction with physical activity, right? Bring a friend, hold onto, and go to safe places. If your neighborhood has ruts and roots and undulations, probably not the safest place in the world to walk, try to find a safer place. You know, in some of our research studies, people will tell us, well, I just walk up and down the hallway in my house, and the benefit to that is I have walls that I can lean up against and push up against, or I walk back and forth along the back of my couch because I know that there's something there for me to grab onto when I get tired and I need to sit down and take a break. So, you know, there's, there's a million and a half ideas that people can come up with, and it's just being clever and being smart and not putting yourself at undue risk. That's the last thing we need people to do.

[C]

I'm wondering, Robbie, you mentioned the swimming piece. This next question asks what do we know about the types of exercise that play the largest role in preventing Ms. Symptoms from progressing? Is it weight bearing, is it aerobic, is it stretching? And then also, how rigorous does aerobic exercise need to be to make a difference? So maybe we can touch on that.

[A]

That's a million dollar question right now. If I had a couple million, I could answer it more readily. You know, to me, the best type of exercise is the exercise that you'll do, right? I mean, at the end of the day, the best type of exercise is the exercise that you'll do on a regular basis. If you don't know, then that's where I think you should experiment. I mean, we have data that show that walking is good, cycling is good. You know, steppers are good. There are some data that swimming is good. You know, there are lots of different ways of getting the aerobic activity. Don't forget about resistance training. We know that strength training is really good. It doesn't have to be going to the gym and lifting super heavy weights. It can be very simple things like using cans of vegetables, things like that. It can be using resistance or elastic bands. It can be using weight machines and things like that. One of the things that you know, like stretching is always good, right? I mean as, as someone who's prone to injury, stretching is, is really key. There are lots of manuals out there on what to do with stretching for flexibility and range of motion. The one thing I think a lot of people miss is balance exercises. You know, there are things you can do safely in your home with like a chair for support, things like that, where you can stand on one leg and hold onto a chair with varying degrees of sport and begin to change your balance and improve your balance as, as well. So I hate to say that there's not one type of exercise. There are some data coming out of, of Europe looking at high intensity interval training in people with Ms. Versus kind of this more moderate intensity continuous exercise. So high intensity interval training is like you work really hard for a short period of time and then you rest, then you work really hard for a short period of time and rest. And, and the data seem to be really good about that as a more efficient way of people getting the benefits. And I'll point out that you can even do that in people with really high level disability. We've actually developed a protocol for doing high intensity interval training on one of those arm leg recumbent steppers that people who have arm or leg function can get into and do a high intensity interval training. So I think the data are pointing towards there are additional benefits with high intensity interval training, but I think for the majority of people with ms, they're not at that level, they're not pushing to that stage yet, they're at the lower level. So just being a little bit more physically active as part of everyday life and moving up the spectrum towards that is really the desired goal. So people with Ms. Are, are always fighting the progression of the disease through a number of different approaches for treatment, whether that's through their neurologist or through psychological mental health services. Because you know, we know that Ms. Is a disease where people decline over time. Physical activity slows that, that decline. We, we actually published a study, it wasn't a long, long period of time where we followed people over a three year period of time. And we looked at those who were physically active before this three year period of time and those who were not physically active. And in those who were physical activity, their disease didn't progress, it progressed, it stayed flat. But in those who were inactive at the initial starting point, their disease slowly progressed over time, which is typical of Multiple sclerosis. So I think physical activity actually slows or stops the progression of disease, you know, with a very far and large margin.

[C]

Thank you, Duarte and Francis. This might be one that you guys could chime in on. What advice would you give to people who struggle to start or maintain an exercise routine due to mobility issues or fatigue?

[E]

Just say, I suppose, as Rob said, find something that you can do and it doesn't have to necessarily mean going to the gym as just trying to be creative in your own. In your own home. And even it might be just stretching on yoga at the very, very start and try to build small steps. Like I always speak about the marginal gains, being able to build that by 1%. And if you're building even 1% every week, that all adds up over time. And for some people, it's just the unknown. It's like an intellect. Community in a gym can be quite daunting. I know that. But if you can find a friend that will go with you or an accountability partner, someone with Ms. Or doesn't have ms, like, I went into that gym and to be honest, I spoke about this as the retreat. I had a very difficult time disclosing that Ms. Because I didn't think people needed to know it wasn't part of what the identity was. But through time I've evolved and I suppose I've become more transparent. And that's why I sort of got myself involved in the adaptive category of CrossFit. And there's so many people with variants within that category. There's people who have minor, moderate and quite major disability, but each one of those is actually doing the best what they came with, their level of ability, and some of it's actually really, really incredible. So, yeah, if you're looking some inspiration, I would say, how about we look that. Because you can see people with all levels of disability just trying their best. My advice is to start small and build and just try your best and enjoy it. That's the most important thing for me. I love exercise and I love training, so that's a blessing. So you have to enjoy what you're doing. So it helps if it doesn't feel like a chore, if you like. And that's where something like an accountability body might help.

[D]

Just to add a couple of things on the inspiration, you know, there's quite a lot of nice resources that OMS has put together and even more on the LiveWell Hub too. And you see, you know, stories directly from people. Right. So it's always a bit more personal. You know, somebody in the community that says, I started, you know, doing exercise, xyz, I'm not a runner. I hate runner. So I started with the bicycle, or I'm not, you know, a cyclist. I started, you know, going for classes, group classes or individual classes. So you always find. You always would need to find, like, an exercise or a sport that you feel, you know, good doing it. Same thing with foods, right? The healthiest vegetable is the one that you eat. So, you know, it's the same thing with exercise. But one thing that you mentioned, and I think it's really crucial, it's the creativity part, right? You can do very simple things. You know, if you take out the trash out, don't take the elevator, take the stairs, right? There's little things you can incorporate. I wouldn't necessarily call them physical activities, like physical activity or exercise, but it will help, you know, with that step count at the end of the day, or it will help, you know, even get your mind, you know, into a new path, right? You know, walk a dog in a different direction, you know, see where it goes from there. But, yeah, those little things that you might need to start with, but at some point, you know, after trying out different sports, after trying out, you know, different modalities, it's solo. Is it in group setting. I think at some point you will start to narrow down your options and say, hey, I really like going to the gym, or, I really like, you know, exercising in a static bicycle at home, or, you know, I love, you know, going for a walk, medium pace, listening to a podcast. You know, there's just get creative. Like, at some point, you'll find something that you really, really enjoy. And once you have that, you know, two or three exercises that you do or two, three different routines that you like doing, just keep up, you know. You know, I think it was mentioned earlier, those gains will always happen. So, you know, if you do five minutes today, six minutes tomorrow is great. You know, like seven minutes the day after is great. So, you know, start building up. Don't compare yourself. That's really important. You know, like, Francis and myself were talking here from a lucky position, so to speak, that we can, you know, exercise. We don't even remember that we have ms, you know, most of the days, like, you just there in the background. So don't compare yourself, right? These stories and these perspectives that we share are meant to inspire, not to create anything else, right? So hopefully they will generate some ideas. You know, hopefully they will open some doors to you. And as Francis said in the beginning, you know, keep up, right? There's a very inspiring community all around. If you feel a bit demotivated, lack of ideas, ask, speak with people. You know, that brings, that can bring a lot. And who knows, you might start a friendship, you know, you might start having an accountability partner. Those are really good things that will help, you know, build up on the physical activity.

[C]

Is there also such a thing as too much exercise causing a negative impact for ms? So, Rob, is that something you can answer?

[A]

So, you know, one of the things that we advocate for is doing physical activity but listening to your body. I think that individuals who do such a great amount of physical activity that the next two, three, four days, they're completely incapacitated, have done too much. And so we, we advocate for, for really, particularly if you're a non active person, very small amounts of physical activity to begin with. Don't try to go out and do 30 minutes all at once. Instead, you know, Duarte brought this up. Go for a 1 minute walk, go for one 1 minute bout and see how your body responds. And based on how your body responds, you might be able to, after doing that for a few days, do two minutes. And I know that that sounds ridiculous, like one minute and then two minutes. But, you know, the road to success starts with these really small bouts that you're successful with that don't compromise you, that don't result in you being so fatigued, so overwhelmed that the next day you just can't do anything. And, and so is there a point that exercise could be harmful? Well, we know in marathon runners, as an example, that when they get up to these very, very, very high volumes of exercise, that they have immune compromised states. But we're not advocating that people with Ms. Need to run marathons. We're advocating that people with Ms. Need to try to engage in a little bit of physical activity and slowly build on that physical activity over time until they, they get to a point where they feel comfortable and they can maintain that and get the benefits. There was one other quick question in here that says, do I have to do 30 minutes all at once? And the answer is no. You can do a minute here, three minutes there, two minutes here, a minute there. We actually advocate that people try to do what Duarte's describing. Add a minute to take out the garbage, add two minutes doing the dishes. You know, dishes count. That's, that's bodily movement. That's, you know, expending energy. You know, do a purposeful walk around the house or the street. But you can accumulate These bouts of physical activity in really small amounts that aren't so fatiguing. And it's the accumulation that at the end, really has big benefits. So I hope that that helps.

[C]

If you, you know, needed to start somewhere, what exercise would you start?

[A]

I think one of our attendees said it best. The healthiest vegetable is one you eat. The best exercise is one you do. So I think, you know, the issue is, if you know what you like, go do what you like. If you don't know what you like, then try a variety of different things until you find one that, you know, really kind of works for you, resonates with you. You know, it's. It's my. My kids used to always tell me, you know, dad, stop riding the bike and start doing the. The Stair Stepper. You know, you need more benefits from exercise that you're not getting from the bike. I hate the Stair Stepper. It's absolutely the torture device that is of all torture devices. But I started doing it, and I realized I liked it after I got it. And now it's my preferred choice of aerobic exercise equipment when I go train is get on the Stair Stepper. Because I've now figured out that I like it and I like how it makes me feel afterwards. So that was through a little bit of trial and error and willingness to try something new, right?

[E]

No, I was going to say, Jereta, just enjoy it. Do it for pleasure. Don't try and see Nautilus as a chore, just to enjoy it and embrace it. Do it as mindfully as you can and find something you love. Mightn't enjoy the first thing that you try. Go and try something different. Be creative. We all face obstacles at different times, but I think if we can be sort of solution focused and just to try, just explore new things and cross new paths with people, I think you will find something you enjoy, and it doesn't have to be anything massive or big, but just something you like, enjoy doing. And I think it really helps if you have somebody with you on that journey. So if you can try, use the. Get the platforms or somebody in your local circle to sort of link in with and create that wee bit of an accountability body with you, I think that will help.

[C]

Well, thanks, you guys. We're at the end of all this, and it did fly by, and there are more questions. Hopefully I was looking through. We kind of seemed to answer a bulk of the things. So I hope that you got what you wanted today. So thanks again to our participants and thanks to all of our people here take care of.

[B]

Thank you for listening to this episode of Living well with Ms. Please check out this episode's show [e-mail] 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 [e-mail] we'd love to hear from you. The Living Mo with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. Please we do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.