Living Well with Multiple Sclerosis
Health & Fitness:Fitness
Bio:
Dom Thorpe has been working with MS patients to help improve their lives through health and fitness coaching since 2008. He was raised by his mother, who had MS for as long as he can remember and has made helping people with MS his career choice after seeing the effects MS had on his mother. He’s the creator of The MS Warrior Program, which has been completed by over 1,000 people with MS since its launch in 2018.
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S4E49 Transcript
Exercise Tips for All Abilities
Geoff Allix:
Welcome to Living Well with MS. The podcast from Overcoming MS. The world's leading multiple sclerosis, healthy lifestyle charity celebrating its 10th year of serving the MS community. I'm your host, Jeff Alex. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode, show notes for more information and useful links. You can find these on our website@overcomingms.org/podcast or on whichever podcast platform you use to tune into our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast, have questions or ideas to share, email us at podcast@overcomingmess.org or you can reach out to me directly on Twitter at Jeff Alex. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform.
Geoff Allix:
So you never miss an episode and now let's meet our guest for this episode. Welcome to the latest episode of the Living Well with MS podcast. This week, we're talking about exercise tips for all abilities with Dom Thorpe. Dom Thorpe has been working with MS patients to help improve their lives through health and fitness coaching since 2008. He was raised by his mother who had MS for as long as he can remember and has made helping people with MS his career choice after seeing the effects MS had on her. He's a creator of the MS Warrior program, which has been completed by over 1,000 people with MS since his launch in 2018. So welcome to the program Dom, and thanks so much for joining us on Living Well with MS.
Dom Thorpe:
Thank you for having me.
Geoff Allix:
So to dive straight in, you've got quite an interesting background. Could you tell us a bit about how you became a fitness trainer and what was your path to becoming a fitness trainer?
Dom Thorpe:
So the fitness thing happened a bit by accident actually, because I came to London, I say came, I'm not there anymore. I've just moved out. But I arrived in London in 2000 to do university where my degree was an engineering design type thing. But my original goal was to design sports footwear. And so like with trainers and things like that, like Nike and those kind of things, but because of that, there were various units in my course that were sports specific. So they lumped us in with the sports science students and occasional lectures here and there. And so I think that was where I started learning a bit about fitness, but one of my jobs to keep me afloat throughout the university days and pay for my beer money, I suppose, was working in the gym.
Dom Thorpe:
And by the end of university, I think I established, I probably wasn't a great designer, but quite enjoyed the fitness industry. And so I moved from a part-time position into a full-time role, and it went from there really, but as a manager, and I don't know, if you want me to expand upon the [inaudible 00:03:21] at this stage in terms of how that went into my career, but there was a leak from gym management to wanting to run a disability specific fitness company.
Geoff Allix:
Okay. We'll get on to that in a bit, but that relates to what you're doing right now. So what are you doing now in the fitness space and what's your online fitness enterprise now?
Dom Thorpe:
Through a massive stroke of luck, I had moved entirely online actually just a few months before coronavirus actually hit or struck. So I'd been doing prior to that face-to-face personal training, just traveling around London, visiting clients with all sorts of disabilities, but the majority of those clients would be people with MS because they could see the backstory of me and my mom having MS, which was what led me into this niche, if you like. So that was where a lot of my experience came from seeing clients face to face, but the knowledge accelerated massively when I started reaching out to an online audience and speaking to a lot more people with MS. And that enabled me to launch what was my first program for people with MS, which is the MS Warrior program.
Dom Thorpe:
And it all coincided as a bit of a fluke, completely random stuff happening, right? I had a client who had no physical limitations at all. He was just somebody that met me from word of mouth. And I trained him for a number of years and then he stopped training. And then he called me back a few years later and said, "Oh, my wife would like to also do a bit of this exercise." And so I was training them both. And I said, "Oh, Jen, what are you up to these days knowing that she'd previously worked in charities." And she said, "Oh, I'm now at the MS society." And I was like, "Oh right, interesting." Because that's what I do with a lot of my clients. And she was like, all right, interesting.
Dom Thorpe:
And again, another massive fluke at that time. They were looking for a fitness instructor to present and deliver their online fitness videos. And she said, let me speak to so and so, and I wonder if we can get you in. And within a couple of weeks, they'd brought me in. We were filming in the same studios as Dragon's Den, or Shark Tank if you are from the US, filming the fitness videos and then they launched them. And I think that again helped expand people's awareness of me. And yeah, everything's online now. I don't do any face-to-face anymore. And the MS Warrior program is one of them, but they also offer a program called the Custom Fit program, which is a more customized one-to-one coaching approach as well. But again, done remotely. So yeah.
Geoff Allix:
Heads up Living Well with MS listeners. This month is movement March at overcoming MS. Keep an eye on our social media channels for tips, videos, and ideas on how to keep your body moving this month. And on a related note, have you joined any of our live movement sessions? Overcoming MS has partnered with Dr. Gretchen Hawley to offer our community live movement classes. Find out more on our social media channels and website, but more importantly, make sure you sign up, so you don't miss out.
Geoff Allix:
And so what is the connection with your mom then? So you said your mom had MS?
Dom Thorpe:
So yeah, my mum had MS as far back as I can remember. And she was one of these invisible illness MS people, if you like initially. Right up from when I was a teenager, I just knew she had MS, but to me, it didn't really look like anything was going on. So I was quite naive in that respect, didn't know a lot about it. Until I came away, left home and at that point, her physical condition declined quite rapidly. And within the space of about six years, she'd gone from walking seemingly fine to being in bed, unable to really move herself very much at all. So, yeah. And that was the point I'd visited her with my granddad and seen her in this state and recommended that the hospital come and collect her.
Dom Thorpe:
Because I thought this was not a way that someone should be able to live, she was just having a carer coming three times a day, taking her to the toilet, feeding her and stuff. And I'd never seen this before. So I just thought this is not acceptable and took her to hospital, left her there that night. And the next morning got a phone call from them saying that they thought she had had a stroke, but after lots of tests over many, many months they established that it was actually a massive relapse, which had caused some brain damage through lack of oxygen to the brain. And from that point on, she spent the next six years in her home, basically motionless being fed through a tube and we didn't really know if you could communicate with her.
Dom Thorpe:
We would visit, we would say, hello, awkwardly try and talk to her and tell her what's going on. But with no idea of can she hear me? Can she understand? There were occasional reflex actions and stuff. And eventually I lost her in 2012, by which point I'd already stumbled across the fitness for disabilities course that I didn't even know existed. I remember thinking at the time when I saw the course, I was thinking, well, disabled people can't exercise, what's this all about? But I went on the course, and it completely opened my eyes. It kind of blew my mind a bit. And I just thought this is something I need to do, need to get into, and that was when I was…
Geoff Allix:
And so she wasn't, your mother wasn't particularly encouraged to exercise when she was [crosstalk 00:09:31].
Dom Thorpe:
No. That was it. As we discussed earlier back then the advice was to save your energy and not do any exercise for people with MS. She'd gone to, I think like a little local aerobics class one time or something. Now you must understand my mum was someone that had never exercised. So for her just a complete lack of understanding of what it feels like to exercise. I don't know, this a hundred percent sure, but I think what she was experiencing was like the typical muscle pain that you get with lactic acid buildup in the muscles. So the burning sensation and stuff, but because it was a numb, familiar feeling, she put it down to MS, which is something that we see quite a lot. And I'm sure you are aware of it, the question, is it MS or is it something else? And it's very easy to say, "Ah, you know, that must be the MS." So she tried it once and never did it again after that. Exercise wasn't something that she was doing.
Geoff Allix:
Yeah, it is a difficult one I am familiar with exercise. I'm not somebody who went to the gym a lot at university. In fact, my son is looking at universities now and is looking at the same. I went to Leeds University and he's asking about the gym there. And I had to admit that I'd never actually been in the gym at Leeds University. I had been rock climbing and running and other things. I'm familiar with exercise, but I have to say if you've got MS and it is different for everyone, but personally, certainly if I work really hard on exercise, then it will affect my balance a bit and my walking a bit more so than prior to that, where I just feel that burn and I'd be fine, but my legs would burn a bit, my arms would burn a bit. It is worse now, but that's not a relapse. That's something that you get over in a couple of hours.
Geoff Allix:
And I think maybe that's where historically my father wasn't encouraged to exercise that they were thinking it was sort of something that was starting out, maybe starting a relapse, but it's not, it's just your recovery is certainly worse.
Dom Thorpe:
Well I think that's probably to do with, you've heard of Utah syndrome?
Geoff Allix:
Yes.
Dom Thorpe:
So when you're exercising, of course the body temperature or the temperature of the core and the neurological system increases, which can exacerbate symptoms, generally legs, and things like that. The thing that I try and remind my clients and anyone that I speak to with MS is that this is, it's temporary and you are not doing any further damage. And I think that's the important thing. When someone tries that and they're like, "Oh, all of a sudden I came in there and I could walk and now I'm trying to leave the gym and I can't walk." And I've spoken to clients that have gone to gym and then had to be carried out by the staff. Because the legs, which I can imagine that must scare the out of you if you don't know what to expect or you are going to come away a few hours later and be back to what is your current normal, I suppose. Quite scary.
Geoff Allix:
So OMS promotes evidence-based lifestyle modification for improving health with MS. And one of the pillars of that is exercise. So what's your belief on how increasing exercise and movement might actually correlate to improvements in MS symptoms? Do you see improvements in clients?
Dom Thorpe:
It kind of goes, if I was to do a broad summary, I might say that we see improvements in how people feel symptoms and things like that. I would often put that down more to the nutrition side of things. But one of the things that we know taking MS out of the equation is, we know if exercise is done properly, structured exercise, not just like walking the dog or things like that, structured training sessions with the goal of increasing your physical ability. We know people can improve their balance, get stronger, get more supple, faster, anything like that. And although there's a massive lack of research into the effects of exercise and we're starting to see more of the effects of exercise for people with MS. The way I come from is, we apply logic.
Dom Thorpe:
There's no, we don't have any research suggesting that the typical thing or the common principles of exercise work any different for people with MS. We know you need to modify exercise. We know you need to be aware of things that we've just discussed, like the aftereffects of a training session, which happened for some people, not everybody, but the fundamental principles and this is one of the approaches that I take. We've got to remember that for more or less everybody whatever your condition, disability, chronic illness, the basic principles of fitness remain the same. To increase strength, you have to load the body with increased weights or resistance to improve cardiovascular fitness. You have to get your heart rate up to improve endurance, it's about doing things for longer. And the same principles apply to people with MS. In terms of scientific evidence, I've seen this time to time again with people I've worked with. We see people finishing their programs stronger than when they started or with better balance.
Dom Thorpe:
But personally, I think there needs to be a lot more time, money, or effort put into research in the subject, because there's a lot we don't know about how those methodologies might differ or need to vary.
Geoff Allix:
It's a difficult one, isn't it? Because the drug companies are obviously funding most of the research, because there's a financial benefit.
Dom Thorpe:
They're making some money back there.
Geoff Allix:
If Nike got in involved maybe in MS.
Dom Thorpe:
Well that's it. And the bottom line is what you get is very small studies done by people like me or like if one of the MS charities gets a smaller amount of funding that can be allocated towards this. There is hope for studies, but there are not enough people and probably not done for a long enough duration, so the data's not great and it's difficult or not even ethical to do like a sort of double-blind controlled test where you can say, right, you're not allowed to exercise, and you are. And we think the people that are going to be better off, but [crosstalk 00:16:27].
Geoff Allix:
[inaudible 00:16:27] is it the people who are not exercising.
Dom Thorpe:
You can't exercise without realizing it. I think that to some degree, you're going to get some sort of placebo benefits of, "Oh, I feel so much better." And I think that happens as well, which is no bad thing. If you are doing exercise and you feel better, whether that's placebo effect or genuinely being better, it shouldn't make a huge amount of difference here. If something's making me feel better, it's good. But I know from working with clients that people will get stronger. And I think this is as much down to nutrition is the exercise. They will feel more energy and less fatigued if they apply the right sort of principles.
Geoff Allix:
And could you tell us a bit about the key elements of your MS Warrior program?
Dom Thorpe:
So the MS Warrior program is sort of the lower cost one, which is, it's like a DIY follow along. So it requires you having some element of motivation to stick to it. But what I give people is a series of home workout videos for those people that prefer working out at home, but also gym alternatives for those that do have a gym membership and they will vary throughout. And the idea is that the exercises become more advanced throughout the 12 weeks of the program on the assumption that people will have improved physically, they will be stronger or have better balance and capable of slightly more than they were at the start. So I give them nutrition guidance as well. And lot of that is more, a bit more focused on the weight loss side of thought.
Dom Thorpe:
Because I see a lot of people coming in that have gained weight as a result of their MS, largely due to a drop in activity levels. They don't really know how to address this. So I try and give them tips on that. But again, I think this is where we probably see eye to eye with OMS and my stuff is the kind of the whole foods approach and trying to make sure that you're getting plenty of fruit and vegetables into your diet. Because they are really the things that move the needle in terms of your general health and wellbeing and again a low saturated fat approach. So trying to give people guidelines on that. I want people to finish the program more knowledgeable than when they started. So yes, exercise videos; yes, nutrition guidelines, but also an education component.
Dom Thorpe:
And every day they wake up to find an email that arrives in their inbox at 5:00 AM with a mini lesson. And what I've tried to do every day is a different lesson that covers various subjects, symptom management, mindfulness, principles of exercise. So they finish the program far more knowledgeable and confident in their own ability to maintain their health going forward. And that's part of the motivation package as well. So those daily emails, I think if you read that thing, first thing in the morning, it gives you a boost and should help you sort of adhere to the program throughout.
Geoff Allix:
It's not that I've done all sorts of various programs. It is a strange thing. When you do something that is online and remote, it still makes a difference. I don't know how it may be for different people, but to try and do it completely on my own, I really have to diarize. I know that the person on the Internet's not actually looking at me or I could just lie and say I did it and you'd never know, but there is still something about that daily email or something daily, this is what you're supposed to be doing today. And I was like, okay. So yeah, there's no reason why you couldn't like that motivation, isn't there? And it still works even if it's remote, but yeah, I guess it might be different for different people, but certainly for me, I think it works.
Dom Thorpe:
You do. You get different type of people, don't you, there are some people and I know this, and this is why the custom fit program exists as well.
Geoff Allix:
So custom fit is the level above MS Warrior.
Dom Thorpe:
Yeah. That's the one where if you're not exercising, you're getting a phone call each week from somebody that's going to be saying why, what, what's going on? Why are you not exercising? Whereas with the warrior program, although the daily emails are designed to be enjoyable, entertaining, and educational, and to read the next stage to try and keep them engaged. There are people that will just stop opening them and stop doing it at some point throughout. And the goal is to try and minimize the number of people that do give up. But with the custom fit, it's a bit different. It's quite hard to give up because you've got the accountability of the person. I have a couple of accountability coaches, they're people that have MS and they are personal trainers, they'll be having weekly phone calls with the clients to support them and answer any questions.
Dom Thorpe:
But also, it's the fact that I know I'm going to need, I'm going to be speaking to one of these guys. So I need to make sure I do my workouts and it tends to motivate them. And how some people just.
Geoff Allix:
Sorry, go ahead.
Dom Thorpe:
I was going to say some people just need to be told what to do. With something like MS and exercise, it's such a scary concept. You don't want to make things worse. You don't want to do stuff that's going to damage yourself. So it's very common for people to completely shy away. So if you can just say, look, "I know how you can do this. I've done it with tons of people, just follow these steps, do it this way." That is often just enough to spoon feed people the answers. And if you make it easy for them, they'll follow along. Try and remove all the barriers, the little hurdles that someone would need to overcome to do the exercise. And then it happens a lot more easily.
Geoff Allix:
And how do your programs deal with different ability levels? Because you're getting from wheelchair bound to completely running, even.
Dom Thorpe:
Yeah. So the Warrior program, because it's a template style program, what we've got is three categories, A, B, and C. Category A is for people that will walk, category B is for people that use assistance to walk, and category C is for wheelchair users. So what that means is the exercise is firstly suitable for people in that scenario designed to be safe and effective, someone using a wheelchair or crutches, but also designed to target the specific needs of somebody in that position. So yeah, someone who's walking with assistance, they'll be a bit more focused on kind of balance and mobility stuff there. Then obviously the person who's in the wheelchair and we kind of assume that for them, it's going to be more about core strength, upper body strength, being able to transfer and move yourself, propel yourself in your wheelchair, for example. So without having a completely customized program, which is what the custom fit is, this is kind of the next best [inaudible 00:23:31] if for a condition where the spectrum between different [crosstalk 00:23:35].
Geoff Allix:
But you can still exercise if you are not walking. It's not something where you would say give up on exercise. You should still exercise.
Dom Thorpe:
That's right. That's one of my pet peeves it is when people think, because their legs don’t work well, they can't do exercise anymore. I'll never stop hearing from people that say, "Well, I can't exercise, because, you know, my legs don't work." And I think they're not the only part of your body. I mean, you can even do cardiovascular exercise using your upper body or your core muscles. It's perfectly doable. You just need to adapt things and think outside the box to some degree.
Geoff Allix:
No, I find that certainly having historically run as cardio exercise, I ran a marathon and other things. I ran a lot and now running is very difficult for me. So it's how do you get that cardio? So I've got cycling, but also one I came across was just standing running. So you're not actually running anywhere, your legs, aren't, feet aren't leaving the ground, but you're still doing the running motion with your arms, and you can get your heart rate up quite high. And essentially doing that you can still get cardio. And there's swimming. They are all different things you can do. So if you could give us tips, I mean, so let's say three tips for people with MS of any ability who want to develop regular exercise into their lives, what might those be?
Dom Thorpe:
So my first one is, start with what you can do. And that's an approach I've taken ever since I started working with people with disabilities and chronic illnesses. It's very common for people to focus on I can't run, I can't do this. And I said, "Just say, forget about what you can't do. Just look at you and work out how you can. Get your arms to work. You can stand up out of your chair. These are all things that if you can do them, that will make your exercise [inaudible 00:25:42] first of all. So I'll always start with that, because it's more empowering, if you are trying to work on doing something that you can't do with the goal of eventually being able to do it, it can be demoralizing at the start. But if you start with the cans, then you can build up and perhaps once you've started building your regimen, then you can start to look at, okay, now let's maybe address some of the things that I can't do and work out how we might be able to improve our ability.
Dom Thorpe:
You can get to that. So, point one is, start with the can. Point two is, remember that exercise is specific to the goal and assuming you obviously employ the can principle first and foremost, but then think about what it is you want to achieve, because it's not, we don't just do exercise for the sake of doing exercise. Because your doctors told you that it's good for MS or because the government are telling you need to exercise or whatever. Think about what you want to achieve. Whether that's increased flexibility, increased strength, improved balance, cardiovascular fitness, whatever your goals are that should determine what type of exercise you do. And this is where we see people go a bit wrong with MS. The doctors will say, just do something that you can do. And that person might have really, they might be really focused on improving their lower body strength or their balance to help them walk further.
Dom Thorpe:
Meanwhile, the doctors say, go and swim because you can do that. Okay. And you're absolutely right. Start with what you can, but then think, "Okay, but I want to increase the strength in my legs." What activities are actually going to increase that and improve my balance and then let that shape your regimen so that whatever you are doing has a goal and a purpose to get you to whatever physical improvements you want. So that would be my second point. And the third, I think is start small and build up because what we often see in someone like you, perhaps who has previously been quite active and run and done, rock climbing. We sometimes see people have their first relapse struggle for several months. And when they feel like they're ready to get into it, they want to pick up exactly where they left off.
Dom Thorpe:
And it almost always ends in tears because the body's just not, it's no longer used to doing it at that sort of level or intensity. And that's not to say that you won't be able to in the future, but we do need to build up. You got to remember, you didn't immediately start at that point previously. You'd spent years, years, years building up to it. So it might be that you need to start low again, smaller, smaller duration, smaller intensities, and as your body's tolerance increases, then you can build up over time in a safe fashion. It's less likely to make you feel bad and injure yourself.
Geoff Allix:
Yeah, I think, I mean, I'm certainly someone who used to be a beast at fitness or just like, I've never been skillful at sports, but I always just go for it to the max.
Dom Thorpe:
The hard work and stuff.
Geoff Allix:
Yeah, but you mentioned the Utah phenomenon and I can't do that anymore. And that's where I really, I think one of the things where I didn't, I was not diagnosed with MS, but it was the running, it was sort of like that running further, running faster, doing like [inaudible 00:29:11] where you do lots of short sprints, things like that. My foot would start to catch on the pavement and stuff and so that ability to just like really go for it with exercise, I think you're right. We need to exercise, but we also need to be sensible and stay within our limits as well.
Dom Thorpe:
Absolutely. Yeah. To be safe.
Geoff Allix:
I wanted to call that out as well. Because you mentioned MS Warrior and sorry, I forget the name of the other one. The custom fit?
Dom Thorpe:
Custom fit, custom fit.
Geoff Allix:
But also you've got some free resources. [inaudible 00:29:52] and will link to those in the show notes. So if people want to have a try with you as a fitness coach, there are free resources. As well as MS fitness essentials, so people can try it out first.
Dom Thorpe:
Yeah, definitely. Because one of the things that is apparent when, if you can't work, which often happens as a result of MS, money's short. So I always try to make sure I offer a lot of free content and those MS essentials, there are online workouts on YouTube, access to my YouTube channel videos that I film with the MS Society. But not just me, there is access to others like there's some yoga stuff in there, and some Pilates. So there's plenty of stuff for people to get started and if you're stuck and you're like, "Well, I don't know what to do or I can't find any online videos that suit my physical ability." If you download those resources, there's plenty of stuff in there that will help and offer opportunities to try things.
Geoff Allix:
Okay. And so thank you so much for being our guest on Living Well with MS. And we are thrilled to learn about amazing work you're doing to encourage fitness to people with MS at all levels of ability.
Dom Thorpe:
Thanks for having me. It's been good to chat.
Geoff Allix:
Thank you for listening to this episode of Living Well with MS. Please check out this episode show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode.
Geoff Allix:
Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS circles, our global network of community support groups and more, please visit our website at www.overcomingms.org. While you're there, don't forget to register for our monthly e-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time. The Living Well with MS family of podcasts is for private non-commercial 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. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.
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