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S2E21 How to juice up exercise for people with MS with Trevor Wicken

Listen to S2E21: How to juice up exercise for people with MS with Trevor Wicken

Welcome to  the Living Well with MS podcast, where we are joined by Trevor Wicken. Trevor is the founder of The MS Gym, the largest and most comprehensive platform for movement and mindset training for those living with MS and other neurological conditions. Since its inception, it has transformed the lives of thousands of people throughout the world. 

Topics and timestamps:

01:28 What is The MS Gym? 

04:45 Can you tell us a little bit about yourself, where you’re from, and the journey that brought you to launching The MS Gym? 

13:45 How is your fitness philosophy particularly tailored to people with MS? 

18:53 Is it worth getting an MS specialist approach rather than just a normal physical training instructor? 

21:10 What are the biggest obstacles to getting people – with or without MS – to adopt a regular exercise regimen? 

28:39 For the people you serve under The MS Gym umbrella, how do you measure their success or progress? 

44:06 If you could articulate one specific outcome you can say you really nailed in your work through The MS Gym, what would that be and why? 

54:53 What motivates or inspires you as a human being? 

Episode transcript

Read the episode transcript

Geoff Allix  00:00

Hi everyone, Geoff Allix here, your host of the Living Well with MS podcast. To all our listeners, I hope you and your families are staying safe and healthy during this COVID 19 crisis. While social distancing and other restrictions may seem like a drag, in the long run, it will prove critical to stemming the tide of this epidemic and returning to a sense of normality. I have faith we will come out of this stronger, smarter and a bit more enlightened as a result. In the meantime, we at Overcoming MS and the whole team behind this podcast are here for you, to keep you informed and help you keep on track with your personal journey to a healthier you. Now, on with the show. We’re pleased to welcome to the Living Well with MS podcast a very special guest, world renowned fitness practitioner and the founder and CEO of the MS Gym, Trevor Wicken. Trevor, welcome to the podcast.

 

Trevor Wicken  00:54

Thank you very much, Geoff. It’s an honour and a privilege to be here. Like you and I were kind of just discussing beforehand, I like what OMS is doing. The people that are using OMS and I’ve seen in the MS gym are getting great results. And you guys just have a cool community here. And I love that you’re taking a holistic, comprehensive lifestyle approach instead of just a one way, one direction type thing. So I’m excited to participate in this community.

 

Geoff Allix  01:22

Thank you. And so can i start, just as a very broad question, what is the MS Gym?

 

Trevor Wicken  01:28

So the MS Gym is an online platform where we focus on movement, mindset, education and community support. So I myself, I’m a neuromuscular movement specialist. And so I mean, that’s where my passion lies. That’s what we teach, is we give a structured exercise programme that is brain based, neuroscience backed movement programmes to help people with MS and other neurodegenerative conditions rebuild their body through the process of neuroplasticity. We also really focus on mindset and motivation, which is another form of neuroplasticity, behavioural medicine and behavioural therapy has been talking about neuroplasticity for a long time. And so that’s intertwined. So, the better you think, the better you move, the better you move, the better you think. And then one of my passions as just a practitioner and a person is to be an educator. I feel like knowledge is power, and then applied knowledge becomes wisdom, and gives you the ability to really fight back from the fear of the unknown, which is what a lot of people with MS suffer with, is what’s going to happen tomorrow? Where am I going to be a month from now? What’s my life going to be two years from now? Is the diagnosis they actually gave me one in which I end up in a nursing home or assisted living not being around the people I love and not being able to take care of me? So I feel like one of my jobs on this planet is to educate people about their nervous system, about the pathology behind neuro degeneration and how to recover from it. And really learn how to use your body, use your mind and just use your lifestyle to heal.

 

Geoff Allix  02:58

Yes, and I think there’s a lot of stuff on the internet as well. When I was first diagnosed, I saw something that the average time to wheelchair was five years from diagnosis. Right? You think that’s I mean, I came from a slightly different place because my dad had MS. And that wasn’t his story. Even though he, this was pre treatment, there was no treatment, there was no advice. So he was actually well, the advice he had was wrong. So basically, he had terrible diet. He was discouraged from doing any exercise.

 

Trevor Wicken  03:32

Oh, man.

 

Geoff Allix  03:33

And he smoked all the way through to the end. He wasn’t told not to, he did everything wrong, basically. But even then he wasn’t really wheelchair bounduntil very late on. So yeah, I knew that wasn’t necessarily the story. But yes, there’s there is stuff on the internet still saying that sort of thing.

 

Trevor Wicken  03:49

 Yeah. And it’s unfortunate, you know, and why we started the MS Gym is because I just felt like the MS community as a whole was really underserved. And in a way that they had a lot of information to choose from as far as medication goes. But when it came down to actual lifestyle intervention and preventative progression intervention, there just wasn’t a lot of guidance. And there wasn’t any specific plan for people to follow. There was a lot of good guidelines, you know, like do yoga or do cardio or you know, or do pilates or walk or whatever. But there was no real strategic plan that I felt was adequate to help people really, really start to improve in a way that I saw with my clients that I was seeing in person.

 

Geoff Allix  04:38

And can you tell us a bit about yourself? So where you’re from, the journey that brought you to launching the MS Gym?

 

Trevor Wicken  04:44

Yeah, so I’m from Boulder, Colorado, here in the United States. And so for me, where I’ve kind of really experienced the first power of movement as medicine was I got hurt playing American football when I was 16, I had a back injury. And I had three different physicians telling me that I needed my spine fused. And my dad was like, that’s not happening, there’s got to be another way. And in my mind, I was like, well, if exercise hurt it, because I got hurt in the weight room because of inadequate coaching. So if exercise injured me, why can’t I just do the opposite and retrain my body to heal itself. Like it just made sense to me at 16 years old. So I went on a long journey of studying sports medicine, studying biomechanics, studying kinesiology, I got a master’s degree in biomechanical analysis, I rehabed multiple injuries for myself. So I really fell in love with the whole you know, biomechanical way that the human body moves. And then in slightly or right after, actually, I guess, while I was in grad school, I got hooked up with a chiropractor. I didn’t even know anything about chiropractic until I was like, done with school, which blows my mind. But I, they kind of came from things from a neurologic angle and really talked about the nervous system first and the concept of what a subluxation was, and you know, neurologic disruption. And all that was fascinating to me. So I really started studying the human brain. And I started studying how nerves work and how nerves and muscles interact and what neurotransmitters you know, interacted with this, that and the other. And then once I became an official, licensed, or I guess, certified fitness professional, I started applying these concepts to my clients. And the change that I saw in them was remarkable. It wasn’t just about doing the exercise better. It was about let’s figure out why your body is not performing well, why it is not moving well, from a neurologic standpoint, let’s figure out what neurologic pathway we need to fix and create an exercise program around it. And so I was in practice for about 20 years before we launched the MS Gym. And then in amongst that, you know, about seven years ago, I was just feeling really, really poor, like, everything I ate was bad, everything, my eyesight was starting to go, I was having bladder issues, my joints hurt, I was weak. My workouts were just tanking left and right. And I could not figure out what was wrong with me. And so I ended up seeking out after three or four attempts of traditional medicine, kind of not knowing what to do with me, I sought out a functional medicine physician, who was also skilled in acupuncture and naturopathic medicine, and they discovered that I had undiagnosed celiac disease, which is why I was feeling so awful. And then after going through about six to seven months of treatment, I still wasn’t feeling better. I went back and they tested me for Lyme disease. And I had like, I had like, I think it’s like stage three, or whatever it is Lyme, and it didn’t make any sense because I didn’t have the bullseye rash and all this kind of stuff. But when we started tracking my medical history, it was discovered that I probably got bit by a tick when I was on the east coast of the United States. All my symptoms fit, I had heart palpitations, my vision was going, my feet were dropping, I was stumbling, my hand stop working, my bladder was giving out. I had cog fog, I had depression, I had anxiety, it was I was having panic attacks, like it was really, really, really bad. And so through that process of treating myself using the mobility stuff that I knew, the movement stuff I knew, the fitness, exercise and strengthening stuff I knew, following a diet that was appropriate to a person with celiac disease, and then, you know, working on kind of the mindset of like, what does it really take to heal? How much of a priority do I need to make healing? I can’t just fit exercise into my already crazy life. Like I have to literally make my world kind of revolve around my healing process. Otherwise, I’m just gonna get worse and worse and worse. And out of the, probably the darkest and the deepest despair that I have because of my symptoms where I legitimately felt like I was a burden on everybody in my life. There was really not a lot of purpose left. I didn’t know why I was actually like suffering the way I was. I kind of had to make a decision. And it was a leap of faith being like, Well, God need to take me home or show me what you want me to do with this. And about three or four months later I got and Misty at the same time, independent of each other. We just kind of had this ‘aha’ moment of why don’t we start working with, exclusively with MS. So I had been dabbling around with online training programmes, actually put a couple out there. I had worked with people with Alzheimer’s, I helped develop the exercise programme that medical practitioners are actually using with the Alzheimer’s population now all across the world. My back programmes, my neck programmes, my arthritis programmes were being used by practitioners all over the United States and those actually didn’t do anything, like I actually put the programs out there and nothing happened. And when I started thinking about who my passion people are, who are the who are the clients that have fed my life, as a practitioner, and as a person on a very deep, profound level, it was my it was my MS warriors, it was the people with MS because of their character, their resilience, just their will, their sheer will and their work ethic to want to get better, and fight off the erosion of themselves physically, emotionally, spiritually, financially, relationally, all that kind of stuff. My wife looked at me and she’s like, “You have always talked about your MS people is such a special place. And it was those people that kept you going as a practitioner, even when things weren’t going well, you showed up for them, you showed up for them day in and day out, and they just fed you so like, let’s find a way where you can actually help more people across the entire world, rather than just in the four walls of a brick and mortar business.” So that’s where this thing launched. And even though I wouldn’t wish, you know, suffering upon anybody, the pain and the suffering and the symptoms, and all of that, that I went through, really helped me understand and walk with people who are going through neurodegenerative lifestyles, because it sucks, pardon my mouth, but it’s brutal. And it doesn’t just affect your physical. Like I said, it affects your relationships, your marriages, your finances, your job, your purpose, your vision, you know, everything, your self worth, you know, a lot of people feel like a second class citizen, because a lot of people have been neglected or cast out or said there’s I’m sorry, this is as far as we can go, you do realize you have MS so don’t get your hopes up too high. And now it just wasn’t okay with me. I mean, I’ve always been a person that’s like, it’s just not okay with me that somebody else tells you what your fate is going to be. Like, let’s design your life. Let’s let’s create your future. And let’s figure out a way to build your brain and build your body back so that you can live the life you want. It may not be what you thought it was going to be. It’s going to be different. But who’s to say can’t be better and more fulfilling, even though you have this, this condition that’s going to follow you. It’s not to say that your quality of life can’t be something that you’ve never even dreamed of. It’s even better than that. So I’ve had that same philosophy with my professional athletes I’ve worked with, the Olympians I’ve worked with, the seniors population that I’ve worked with that are told that you’re just old. So just deal with it. And I’m like, no, just because you’re over the age of 60 doesn’t mean your life stops, right. And then especially with the neuro clients that I’ve had, brain injury clients and Parkinson’s and ALS, and you know, and then MS and transverse myelitis, and cerebellar, dysfunctions and paralytics and amputees. I’m like, this isn’t the end of your story. Like this is just part of it. And like, let’s be a hero now. Like let’s inspire other people now, let’s inspire yourself. And let’s let’s let people around you that love you and know you see you thrive and see you succeed and see you overcome something that most people couldn’t handle. So you guys as an MS population are my heroes, and you’re my inspiration. And as much as I help people on a daily and weekly basis, I get fed and I get healed by my gymers. My athletes every single day, every single time I get to an opportunity to speak, or speak about them or like brag about them, because they’re awesome. In all their victories, it’s it truly allows me to realize that I am living out my calling and my purpose by helping people find their calling and their purpose by realizing that you can live a life by design and not by diagnosis.

 

Geoff Allix  13:36

And in general terms, what modifications do people need to make to their fitness regime if they have MS?

 

Trevor Wicken  13:45

Oh, it’s pretty individualized. I mean, it’s going to be based on the individual person of what modifications they need, like, somebody may not have an issue standing up out of their wheelchair, but they may not be able to walk, someone else may have a really, really hard time getting out of a wheelchair, but then they can walk a little bit more normal once they get up, right. It’s all based on your brain’s movement mapping, your brain’s movement patterns, like what skills has your brain learned to compensate around the neurologic disruption and the neurologic damage done by MS. And then how is that manifested in how your body moves? Right? So it’s individualized in a way that, you know, some people are going to do better with some exercises, some people are going to struggle with the same exercises. But the way that the MS gym is set up is there is a framework of neuro muscular exercises, and brain based movement progressions that are set up as the template and then within that template, and within that framework, there is freedom for the brain and freedom for the individual to actually kind of tailor it to what they need. Right? So somebody comes in and their main symptom is foot drop, or somebody else comes in and their main symptom is balance deficiencies or an eyesight problem, we hit it from two different angles, right, we need to get that foot corrected, we need to get that vestibular system, you know, back online. But we do that in a certain framework and curriculum of brain based movement progression. This comes from 20 years of studying motor learning, studying the nervous system, studying how movement actually happens in the body. It’s just science, right? So there are some things that every human brain and especially the MS brain need to learn. But then there’s ways to modify it with certain programmes in the MS Gym that we call companion guides that are symptom specific, and work on the biomechanical patterning that is necessary to counteract a specific symptom. So there is a core curriculum that we go through. But then there’s what I call electives or companion guides, that allows a person to kind of customize their programme to fit their individual needs, right. So with modifications to exercise, it’s basically kind of a, try it and figure out what works and what doesn’t like are you need to become your own scientist of your body, your own movement specialist, right. But what I can say about my approach is, it’s a lot different than a lot of fitness programmes, because it actually works on the three parts of the nervous system. So your brain works on sensory input, your brain works on integration within your brain, and then your brain creates a motor output program, which is how you move. So probably 90% of a fitness programmes and therapy programmes out there, movement therapy programmes are all based on and they only focus on motor output. Right? So they’re missing exercises and approaches and progressions that actually improve the brain’s ability to integrate information, decide what is good for it, and what’s not good for it. And also to allow the sensory system or your sensory inputs in your body, which is your vestibular system, or your inner ear, and your spine, your visual system, which is not just being able to look at an eye chart and see but things like depth perception and eye movements and visual acuity and peripheral vision, and then also the proprioceptive ability of your body to actually know what is going on around it and what’s going on inside of it. So a true neurologic recovery programme must include sensory exercises to improve sensory input, neural integration and also motor output. Otherwise, you’re missing like two thirds of the equation.

 

Geoff Allix  17:42

So you’re not just training muscles, you’re training the brain and the nerves and the balance and everything.

 

Trevor Wicken  17:48

Correct. And you’re also training the autonomic nervous system, you’re training the body to know how to use the bladder better, to thermo regulate better, to work on things like vertigo better, or, you know, things like nystagmus, better cog fog, anxiety, depression, like all of those are what are called interoceptive disruptions. So you’ve got to work on that extra-roceptive function, which is your nerves and your muscles and your joints. But then you got to also work on the intero-septive function, which is your brain’s ability to feel safe and connected to itself. Otherwise, you feel like many MSers describe is they feel disconnected from their body, I can’t even feel my feet, I have numbness, I have tingling, my feet are purple and swollen. I don’t even know what to do with my hands like, stuff like that. That’s a sensory disconnect. And we work on that stuff. And it’s built into all the programmes of the MS Gym.

 

Geoff Allix  18:43

And so it’s worth getting an MS specialist approach rather than just a normal physical training instructor to build a programme for you.

 

Trevor Wicken  18:53

Yeah, I would say I mean, I would say yes. However, I’m a big proponent of cooperative care, or integrated care, right. So the way that I train people is pretty specialized and unique. But a great complement to that would be going to a exercise trainer or a, you know, a physio that really knows about strength and conditioning or fitness and can watch you in person and all that kind of stuff. But you’re using the MS Gym exercises, and you’re complementing that with traditional strength and conditioning. That combination is fantastic. Like, that’s how I trained myself. You know, I do MS gym stuff as a movement prep and a neurologic prep and also practice during the day, but I still throw around kettlebells and TRX straps and heavy barbells and whatever. And like the full spectrum, your brain likes all that. So, you know, you need to start by retraining your brain how to actually use movement pathways differently. Otherwise, it’s always going to keep trying to use those demyelinated pathways. And then once that’s accomplished, that new neural plastic behavior, then adding strength training on top of it and conditioning protocols and stuff like that can be very, very beneficial.

 

Geoff Allix  20:10

Yeah, so another one is swimming, I like to throw in swimming because I can do a cardio workout swimming without overheating because of the water.

 

Trevor Wicken  20:17

Yeah, I’m a swimmer, like, that was my sport. So I’m all about swimming. And it really decreases people’s fear, it helps out with thermo regulation, people, if you fall in the water, it’s not gonna hurt you, you’re not gonna break something right, like, so I think pool workouts are great. And a lot of the exercises that we have in the MS gym can be done in the water. And I actually recommend that a lot of times for people that have major sensory and vestibular issues and fears of falling, and thermo regulatory issues. The pool is an amazing place, like water is great to workout in.

 

Geoff Allix  20:54

So what are some of the obstacles that people have adopting an exercise regime recommended, particularly people with MS. But I mean, people in general as well, but trying to keep up that regular exercise?

 

Trevor Wicken  21:10

I think, number one, I think at the core of it. I think belief that this can actually work stops a lot of people. I think that’s kind of number one thing people have to overcome, they go through this crisis of belief, especially if you haven’t been inundated with information like the OMS community or the MS Gym, you haven’t heard a lot of stuff, you’re just kind of following the traditional path of the traditional allopathic path of, you got MS, here’s what to expect. Here’s your medication, exercise a little bit, try to eat right, good luck. If they’re in that mindset to really believe that the body can heal itself, the body can regenerate itself, that oh, that MS symptoms can be overcome. That’s a big crisis of belief for people. And I think everybody has to go through that when they’re making a change. Anything that you do is habitual, the brain thrives on predictability and habits and creating transformation in your life, whether it’s like anything, whether it’s financial, whether it’s mindset, whether it’s physical, whether it’s a new job, whether it’s moving, whether it’s a marriage, or whatever, your body always has to go through this, this crisis of like, changing the way things are because it likes predictability, the brains number one job is survival. And the best way for an organism to survive is to know what’s going to happen next. Right. So I think that crisis of belief is the first thing that people run into. The second thing is, I would say unrealistic expectations, meaning that a lot of people come in to the MS gym or start exercising and they try it for three to four weeks. And they’re like, oh, it’s not working, this isn’t for me. See, I told you, this doesn’t work. And they’re out, right, where I always tell people like “Well, have you had MS longer than a year?” And most people that we work with, like 99% are like, yeah, like five years plus, our average is like 11.8 years is what most people in our MS Gym, have. So think about, 11 years of doing something one way, and you expect to stop in four weeks.

 

Geoff Allix  23:26

Yeah, even if you haven’t got MS.

 

Trevor Wicken  23:27

Exactly, anything, any kind of behaviour change, like you’ve been smoking for 15 years of your life and like I’m done in a month. Now there are some people that quit cold turkey, but for most people, there needs to be a progressional reduction in nicotine intake so that your brain doesn’t flip out, right? Or any kind of addiction, because your brain just gets used to it. So there needs to be this like people have got to stick and stay. And that leads to kind of the third obstacle is really creating and knowing how to create a lifestyle, where nutrition and exercise and mindfulness and stress reduction and building positive relationships and seeking out support and educating yourself really has to become the priority. And that’s very tough when a lot of people with MS oftentimes are caregivers, meaning they’re moms, or they are wives, a majority of people with MS are women. But then on the flip side with men, we are expected to be the providers, the protectors, you know the rock and the stabilizing factor in a family like that’s just stereotyping things, but those are, if you look at general culture, that’s that’s kind of what expectations are a lot of times and when those expectations are oftentimes put first and people taking care of themselves is put last and that is where people need to make a major shift, not only in themselves of being like, you know what I’m worthy to invest in. I’m worth this time. It’s important for me to heal too because if I’m not my best version of myself, how can I be the best husband, wife, parent, employee, volunteer, citizen, right? But a lot of times people are met with their own internal resistance and struggle to that. And they’re also met with that, that role shift from family members, and friends, and kids and employers, and just society as a whole, you know. And like, honestly, like their medical providers, too, oftentimes, they’re like, I don’t understand what you’re getting your hopes up, like, you know, and they, they’re dream killers, and they’re energy vampires, a lot of times, they don’t like, you got to rid yourself of that. And a lot of times, there’s a pruning process and extraction process, that a person with a chronic condition has to make if they are going to heal, right. So if somebody has cancer, if somebody comes in, they’re like, I got cancer, I gotta take the next six months off to heal and get chemo and radiation and whatever. Most people are like, Oh, my gosh, do it, you focus on you, you do your own thing. But with something like a neurodegenerative condition, a lot of people with MS. There are people are like, “You look fine. You don’t look sick, like look like you’re moving pretty well, you can still exercise, you can still work.” And there’s not this, this grace, right? This this, this mercy on people, when they’re like I really have to focus on me, I really have to focus on healing, like people feel guilty, like they’re being selfish. And the thing is, like, you’ve got to be a little bit selfish, because you have one life to live. And there’s only one of you that can contribute to your life and your world in the way that you do. And if you are a broken vessel, there’s no way that you are going to be able to help people in the capacity that you want. And that’s going to continue on your negative narrative of I can’t do what I used to. I’m so sick and broken, I’m, you’re going to be in a constant grieving and mourning process over who you think you should be. Or you once were, rather than having a vision and some optimism and hope and belief that you can actually become a new version of yourself that could possibly be better. So I know that’s a long winded answer. But this is the motivation, mindset stuff that OMS talks about with their mindfulness and meditation and centering. And that we talk about with with like, really neuroplastic change in your brain and working on your mindset. Because if you don’t believe it can happen, you can do the best exercise programme in the entire frickin world. It ain’t going to have the results that you want, if you’re just going through the motions and really kind of be like, I don’t know if this will work.

 

Geoff Allix  27:48

Yeah, see, like, I think in the original OMS book, he talks about faith, and he’s saying not, it could be religious faith, but not necessarily in it’s you need to have that belief structure. And, and I think there is that, people who are following these sort of programmes, that’s really common, they want to get better, they and certainly I see my future as, I’m not looking out for the best wheelchair, I’m looking out for, I’d quite like to go snowboarding again, and surfing and things like that. And yeah, I think you need to have that positive mindset, don’t you? Then how would you measure success or progress for people who are following MS Gym or following exercise regime?

 

Trevor Wicken  28:39

Um, well, it can be answered a couple of different ways. So when you, when you ask that, are you talking about quantitative, qualitative, subjective, objective?

 

Geoff Allix  28:50

How would I, so if I’m following programmes, how could I measure how, you know if I’m succeeding at this? I mean, is it some people it will be, you know, getting no worse? Some people it would be you know, is it worth having a target? You can be saying, I’m gonna do a 5k run, or should they? Are you someone who thinks okay it’s worth setting those sort of targets? Or could it just be, do you feel okay?

 

Trevor Wicken  29:26

Yeah. No, thank you for clarifying. So for us, what we focus on is small victories, right? So I feel that I’ve witnessed in like over 20 years of practice now, that having big goals, it kind of depends where you enter, right? So you know, if you enter and you’re pretty mobile and you’re walking unassisted, and you can jog a little bit. Could a 5k be in your future? Probably or possibly. If you are in a chair most of the day, and you want to run a 5k in a year. That’s, I don’t know, I don’t know if that’s a realistic expectation, Could you, could you run a 5K eventually? Yes, but putting a timeframe of 12 months on it, after you’ve been in a wheelchair for the last five years, most of your day, there’s a lot of repatterning that we need to work through. There’s a lot of progressive threat reduction that we need to do in your brain, so that your brain actually feels safe enough, strong enough and confident enough to actually stand up first, then actually walk, then learn how to walk well,then learn how to walk quickly, well, then how to start jogging, then how to start jogging well enough so that you can carry out a 30 to 45 minute run. Right? So I’m one and I, you know, I’m just gonna say this, like, I believe anything is truly possible, because I’ve seen it happen and some crazy stuff. But it has, it’s due to the person’s mindset, it’s due to their commitment level, it’s due to their, really their commitment to creating a lifestyle that facilitates that type of healing, right. So to answer your question, we always focus on small victories. And so somebody comes in and they have massive foot drop, and or let’s say they have weak hip flexion, and they can’t lift their leg and all they want to focus on is I need to lift my leg, I need to lift my leg, I need to lift my leg. If you’re gauging the success of the programme that you’re in, whether it’s mine, or someone else’s, or a therapy, or a drug, or whatever it is, on that one leg lifting, you may be setting yourself up for failure. Because if every single day you go in and your gauge of success is did I lift my leg or not. And there’s multiple days where you didn’t lift your leg and maybe one day you could and then you couldn’t again, and maybe a couple of days that you did and then you didn’t again, and you constantly think about and obsess over that one result, then that one result could very easily become a threat to your brain. And so therefore every single time you go to exercise, you think you’re going to you think it’s going to be a failure, therefore, you probably you’re not going to improve very quickly. But if you can suspend that, and you can actually focus on the effort of connecting with your body, learning how to move well and actually allowing movement as a global whole to be less threatening to your body. Believe in the process of neuroplasticity, because it’s just science, right? Trust in it, and follow a structured program that has been put together by someone who has studied this for 20 years of their life, their entire professional career, you probably your chances of success will go way up. And success to us and the MS gym culture is, you know, it may not be that your foot drop is gone right away. But do you notice that you’re thinking clearer? Do you notice that you went through an entire day without having to take a nap? Do you notice that you sat through a whole movie or a date with your spouse? And you didn’t even think about? Am I going to have a bladder issue or a bowel issue? Did you take a shower by yourself? Did you put your pants on? Did you walk today for 500 more steps? Did you have a whole conversation with a family member and you felt energized afterwards? Instead of feeling like you need to go sleep for the next five hours? Did you exercise and not have symptoms? Did you cook Thanksgiving dinner and not have a threat response? Have you returned to the activities of daily living in a way that you feel empowered, feel equipped and feel a little bit more sense of control. That’s a success. Because those little successes breed confidence to know that something is changing, something’s improving. And when you start to build those beliefs over and over and over and over, not only does it build confidence that things are working. But if you end up having a bad day, a relapse, a flare up, just a bad day in general, a stress response, whatever it might be, then, you know, like I’ve been here before, but I got out of it before. So therefore I have more faith and hope that I can get out of it again. And so that resiliency starts to build and that will starts to get stronger and that spirit starts to get stronger so that even when you get knocked down, you have confidence and faith enough in yourself and what you’re doing in the community that you’re in, that you can actually stand up, rise up and move again. And I think that is the essence of success for literally any human being because life is just tough in general. But especially for someone with a chronic condition like this or that has MS or that has whatever that is victory because those big victories and those big symptom counteract or I guess the counteracting of those big symptoms, it will happen. It just may not happen on your timeframe. And you need to be okay with that. Because that foot drop may be the one thing in your brain that’s like, I can’t find the map to my foot. And until the rest of my body gets stronger, and I know I can trust every other joints in my body, I can’t pay attention to that foot drop until the rest of my body is strong enough to actually put weight on that foot. Does that make sense?

 

Geoff Allix  35:28

Yeah. And so it’s, it’s very salient to me, because you mentioned about the hip flexors and leg, because I don’t so much have foot drop, let’s talk about foot dropping, one and my foot doesn’t really drop. But what I do have problem with is raising my heel up to my butt and raising my knee upwards. And those are different things. It’s not foot drop as such, but but kind of it’s been like this sort of certain tick boxes that there’s like, have you got optic neuritis, have you got foot drop, and it’s like, okay, you’re just limiting to these things, and it can be different things. But but specific to that. One thing I’m going to ask is, so I sort of work raising my heel up. And if I really work at it, then I’m feeling it the next day. And that’s normally I’ve had, I was a fairly active person, pre MS. So I’m used to feeling it after working out. But now, if I really work out, then that will cause me walking problems the next day, so it’s not going to work so well. So would you encourage people to push it, you know, to that sort of push it to failure? And then, okay, it’s gonna be it’s not gonna be great the next day, day and a half, two days. But that’s doing you good, or should they rein in and search, you know, you need to, to limit your exercise so that you can make sure that it’s not causing any problems in the next few days.

 

Trevor Wicken  37:05

Right? That’s a good question. So it’s kind of dependent on the person again, because there’s a certain, like, different people have different tolerances for things. And it all it really does come down to perspective, it does come down to perception, it does come down to your attitude. Okay. So from a straight science perspective, there’s a concept that I use is called neural edge. Okay, so neural edge, as you know, as I talked about it in the MS Gym is that point of no return when your nervous system and your brain’s like the amount of activity, the volume of activity, the intensity of activity, that the duration of activity that you just did is way beyond my limits, I’m going to start creating symptoms in your body in order to protect you from doing more of this because it’s a threat. It’s a neurologic threat, and a survival threat to us. And so the way that people find neural edge is they either start getting symptoms, so they’re exercising moving along, and I get a lot of while I walk a half a mile, but right at a half a mile, my leg starts dropping, or my legs get weak or I start falling forward and my balance gets off, I would say your neural edge is that half a mile. So just like an endurance trainer that’s trying to improve their VO2 Max, which is the ability of your body to take in oxygen and then utilize it to create energy. So you can perform long distance exercising, people train VO2 Max, they train at a sub VO2 max level over and over and over again like 70%, then they’ll go to 75%, then they’ll go to 80% and then I’ll go to 85 or 90 whatever, they never really truly hit that VO2 Max, once they figure it out, they trained sub VO2 Max a lot of times because they don’t want to over-train, so the same concept, it can be kind of applied to the MS brain is that neural edges that point when your brains like, I was good up until we hit mile like until we hit 21 minutes of walking and then that’s just too much for me. And so I’m going to start shutting things down and causing things to shut down so that you stop, out of protection.

 

Geoff Allix  39:20

So, as someone who did a lot of exercise before, it’s almost like hitting the wall when you run a marathon because that was I mean explained to me when you hit the wall it’s a physical thing you that’s when your body starts to run up, it’s like run out of its glycogen stores and I think it starts to burn muscle next. You’re doing yourself harm, so it’s your body’s telling you this is a really bad idea to carry on running. You’re gonna carry on running cuz you want to get to the 26 and a half miles but, but your body’s saying that’s a really silly idea. You should stop now and you feel better instantly when you stop. Having done it you still Right. Yeah. And you’re right. Yes. Great.

 

Trevor Wicken  40:01

Yeah and you’re right, I mean, that bonking or that hitting the wall is exactly at that concept is the end. The problem with with the MS brain is because there’s so much neurologic disruption, a lot of times there’s a fueling issue or a fueling deficiency, meaning it takes the MS brain a lot longer and your MS nervous system a lot longer to recover once you hit that neural edge. So for you, you got your hit, you get your hamstring store, when you really work on him and stuff like that, like you’re an ex athlete, so you kind of dig the soreness, right. And even though you may not function well that next day, you’re like, you know what, I’ve had this happen before. And I know I’ll come out of it. So you’re willing to go there. To you that’s not, it isn’t neural edge physically, but it may not be mentally because you can, you can walk yourself out of that and make adjustments. The other side of that of the coin, I guess, are people that will flip out because the next day they have more symptoms, or the next day, they’re more fatigued, or the next day, they may have more spasticity, or the next day, they may have more foot drops. To me as a practitioner, that’s an indication that you probably did a little bit too much, I would probably try to stop 10 minutes earlier, or break up your workout into two sections. Take a little bit like you just said, when you hit that wall and you stop, you almost instantly feel better. There’s nothing that says that a 40 minute workout cannot be divided into two 20 minute sessions with a 15 minute, let’s get something to eat, because the brain is fueled by breathing, by nutrients and by movement. Those are the three things neurologically the brain is activated by. Science has shown it over and over and over again. So in amongst your training session, if you’re working really hard, and you start to feel that, eat something that you know is good for you, that your body likes, do some breathing exercises, because oxygen and CO2 gas exchange that feeds the tissues and it fuels your brain. And then you’re already moving. So you’re already activating it, but a lot of times that neural edge is hit because of a fueling issue, in addition to oxygen, carbon dioxide imbalance, and also just straight up muscle fatigue and neurologic fatigue. So the neural edge concept and how hard you should push yourself is pretty individualized. But a lot of the programmes in the MS gym, the way that they’re progressed through the programme, I thought about that. And there’s different time levels. And there’s different ways that we move, meaning different training speeds, different training intensities, different training reps. So I’ve applied fitness programming to brain based neurologic, you know, recovery programming, and so you have a nice combination of both. So somebody that just enters the MS gym, they’re doing like 20 minutes, 25 minutes, seated in a chair, because that’s safer for their brain, they’re probably going to be good. And if somebody comes in and they’re like I made a bed, I can’t hardly sit up, I got a program for that. And it’s 18 to 22 minutes, and you’re literally doing all the exercises in the safest place for your brain which is flat on your back in a supine position. And they they’re 18 minutes long to 20 minutes long. There’s seven of them, they just keep repeating that along with some breathing exercises and all that until they get to the point where maybe they can do an exercise program seated in their chair, seated in their rollater or we call it their wheelie walker. So there’s a progression built in to allow for that adaptation in that learning process. So that people don’t hit that neural edge and be like this exercise makes me feel awful. Because that’s the last thing that I want is for someone to be like this doesn’t work for me, it just makes me feel worse. If it makes you feel worse, you’re probably doing too much or the wrong type of exercise.

 

Geoff Allix  43:52

And is there, would you say there’s one thing that you think, I’ve absolutely got that right, I’ve nailed that, in your time at the MS gym.

 

Trevor Wicken  44:00

Me personally?

 

Geoff Allix  44:02

Well as an organization as much as anything.

 

Trevor Wicken  44:06

Community. Like the members only corner, so when you join our membership, you’re actually put into a private Facebook group with other people that are in the same thing. They’re all going through the same programmes, they’re going through the same stuff. And the miraculous thing about the MS Gym is the support community that people get. It’s like, amazing, amazing doesn’t even do it justice. Because I feel like that community is the most supportive. The most accepting, the most diverse, the the most understanding, the most caring, the most loving, the most empowering, the most educational and the most committed group of people that I’ve ever seen. And I truly truly, truly believe, like I know I’m good at what I do, but honestly, it’s the support of my MS Gym athletes for each other, that have carried people through some of the darkest days that we’ve seen in there. Because it ain’t Disneyland in there. I mean, people come in, and they share their struggles, because it’s a safe place. And they also share their victories, because it’s a safe place. People feel okay to struggle, but they’re also optimistic, and they know that they’re gonna get help. They know that there’s people in there that have gone through something similar to them. And they’re like, I get you, I been where you are, I once was where you were, when I first came in here, I have the same fears and and hesitations and all this. And let me tell you, this is what I did. Here’s where I was, here’s what I did. Here’s what happened. And then furthermore, like, people are cool to share victories. And even if somebody is struggling, they celebrate the person having a small victory or a big victory. And so there’s not this like constant, like, I feel kind of bad that I’m doing well, when I just read that someone’s struggling. Like, that doesn’t happen. It also doesn’t happen where it’s like, everybody’s doing well and I’m struggling and I don’t want to feel like a failure, so I don’t want to say anything. That doesn’t happen, because I won’t allow it. And what’s cool is that the rest of my original gymers, I call on my OGs. They don’t allow that to happen. Because we’re a family, like, we are a team, we win together, we lose together. And literally, like, I get goosebumps, even talking about it, and I get super emotional because like, the amount of like, love that is in that community is amazing. It is amazing. It is a true miracle on the planet, when so many people with neurodegenerative conditions are made to feel like they’re not worth someone’s time. They’re not worth someone’s caring, they’re not worth someone’s love. They’re not worth someone’s attention. Because it’s just too much work. To have a place that’s safe and secure. That’s diverse and that is filling is it’s invaluable. Like it’s truly invaluable. And so the one thing that I know we have done right as a leadership team, Misty, myself, Ken, our other MS Gymmers that have become leaders, paid for staff members of the community, and also our volunteer army of ambassadors. They know there’s something special there. And they’ve done such a good job of creating and fostering and nourishing a community of people that every single time they come in the MS Gym, they know everything is going to be okay. And they leave their day in the members only corner feeling better than when they went in. If I can leave this earth knowing that we helped and participated and played a role in creating an organization and a group of human beings that have that attitude and compassion and care and love for each other. While empowering them with resources. Like you guys talked about inform, educate and empower. Then I know I’ve been a success in this life, and it’s it’s happening. And so I love my MS Gymmers man, I will do anything for them.

 

Geoff Allix  48:21

We should probably say as well. I mean, you mentioned a members only area and membership. I mean, you actually give away a phenomenal amount of free videos, advice, there’s a free Facebook MS Gym area. So you do actually, it’s not just about paid subscriptions, you actually do, you’ve given away an awful lot of stuff. I started out with a there was a daily program and you did a sort of daily calling, and that wasn’t something you have to pay for. So there’s actually you do provide an awful lot of resources as well.

 

Trevor Wicken  48:59

Yeah, and that’s part of our initiative, too, isnt it, I mean, we have, I don’t know, I think it like last time I looked, it was like, we have over 700 and something videos out there. And I mean, we are on YouTube, and we are on Instagram, and we do have a free Facebook group. And we do give away a ton of free resources, like seven day free resource guides based on your symptoms. And you know, we do things like $1 trial into our membership and stuff like that. We even have done like free trials for people. And because it’s really important for me, like I just want people to know that movement is medicine. And I put a lot of free stuff out there because I don’t want money to be a barrier. Like when you pay for our membership you pay for structure and you pay for like, you know the programming and time that goes on behind the scenes and facilitation of admin and all that kind of stuff, whatever. But the free resources are super duper important to me and it’s good that we get good information out there. That people can follow like yourself, Geoff, because you said you used it. And obviously, you got some benefit out of it. Because otherwise I wouldn’t be here. If you’re like, this is this is garbage, this is garbage, this is rubbish, right? That you’re not going to, you’re not going to recommend. And so we always want to meet people where they’re at. And if you’re in a place where you’re like, I don’t have the money, I know I need to move. I know there’s someone out there, where are they, boom, here we are. And we do jump onto Instagram and help out a lot. I do make comments on YouTube videos, we give out a ton of free stuff in our Facebook group like education and motivation and exercise circuits and all this kind of stuff, because I just want you guys to start moving because movement is life and movement is the one thing that will actually counteract your MS symptoms, because movement reduces threat in your body. It’s it’s in your joint receptors. And I could go through and geek out on neurology, but movement literally inhibits the threat responses in your body that cause your MS symptoms. And so thank you for bringing that up, Geoff. But I mean, we’re gonna keep adding to our free resources. I’m going back into free resource mode, probably in the next couple of weeks, you’re gonna see some cool stuff come out on our Instagram page and also in our free Facebook group and in YouTube. That really goes into like neuroplasticity, what exercises are good for what, what actually improves the effectiveness of exercises no matter what you’re doing, all kinds of cool topics, because I want to educate and empower people with MS so that they can feel like they can become their own best advocate and their own best expert really of their body so that they can take control and they can get in the driver’s seat and drive their own car.

 

Geoff Allix  51:38

I don’t remember, I paid $1 for the program. I did. And it was explained why you charged $1. Because I think it was a week long, so I was paying, what’s that, 15 cents a day at but actually, by paying $1 there was some form of commitment there. And I think that was I think I’ve probably not necessarily all fitness things, but definitely other things where you think it’s free. And then you don’t worry about it because it’s free, like paying $1. Because that is actually a nominal amount. It wouldn’t work. Because it wouldn’t buy your coffee. It wouldn’t buy you buy right? How on earth coffee cost too much. That’s a whole nother podcast episode.

 

Trevor Wicken  52:18

Amen, brother, boy, and you nailed it,

 

Geoff Allix  52:21

But, paying $1 meant I turned up every day and I did those exercises.

 

Trevor Wicken  52:26

Yeah, you’re like, I’m gonna make this dollar count for something. And that’s important to me. You know, I mean, there’s a lot of time, a lot of heart, lot of commitment that goes into creating what we create. But there’s also a lot I understand that like, there’s a lot of time, attention and effort that you, as an MS Gym athlete are going to need to put into this, right. So when there’s an exchange of value there, no matter whether it’s $1, or a monthly membership or an annual membership. There’s skin in the game, there’s an investment, there’s a commitment. And I can tell you from experience of working with 1000s, I’ve done like 150,000 sessions in person before the MS gym. The most non-compliant people that I had were the ones that were covered by insurance. Because they were it was like, well, insurance is covering it, just charge it, charge my insurance today, I’m not gonna come, this happened, and this happened and whatever. But when people are literally taking their hard earned dollars and handing them to me, they’re like, “Okay, cool, I gotta make this happen.” And when I know that’s happening, I’m like, Okay, we need to make this happen, like, tenfold what they gave us, right? And that’s really what we pride ourselves on is it 10 times return on the value we provide, versus what you invest. And, you know, the free resources is an amazing place to start to kind of tread the waters and figure out what your body likes, and what it doesn’t. We had amazing success stories just using the free resources before we even had a membership. And since we had a membership, and but that’s an entry point. And when you’re ready for more, we have another step that is still free. And when you’re ready for more, maybe you go to $1 trial. And when you’re ready for more, maybe then you go to a month trial. And when you’re really ready for more and you’re like dude, I believe you I trust you. You’re not a schmuck. I kind of like you. You’re kind of weird, but I like it, then you’re like, I’m in, let’s do this thing. And so we always want to meet people where they’re at and not force them to make a decision that they’re not ready for because they’re just not going to do it otherwise. And there’s no point in me telling you or showing you or selling you on something and then you get in there and you’re like I’m not going to do this. That’s done. That just that just pushes you further away from where you’re supposed to be.

 

Geoff Allix  54:46

And as a final question, just as an aside, really, what motivates or inspires you as a human being?

 

Trevor Wicken  54:53

Uhh,  people’s fight, like the fight within a person to overcome adversity. And rewrite the story that they were told that they have to live out. And that’s, I mean, you guys, like you guys as MS Gym athletes, like you inspire me because, like you said, Geoff, you’re like, I I’m not gonna go look and see what the best wheelchair is, I’m gonna go figure out how I can actually beat this thing. Or at least manage it enough that I can still live the quality of life that I want. And I’m going to do whatever it takes, I’m going to, I’m going to commit to this, I’m gonna get after it, I’m gonna get knocked down, but I’m sure as heck gonna get back up and I’m gonna keep fighting. So like resilience, persistence. And the underdog story is what drives me to have you guys stand up and change the narrative in the MS community and really kind of in the world, to basically be like, you know what, yeah, I got dealt a crappy hand and I got to deal with it. But I’m gonna win. I’m a victor. I’m not going to be a victim. And I’m going to do this. I’m going to do this with a bunch of people who are doing it alongside me and we’re gonna go change the world together.

 

Geoff Allix  56:11

And with that, I’d like to thank you very much for joining us, Trevor Wicken on the Living Well with MS. Podcast.

 

Trevor Wicken  56:18

Absolutely, Geoff. Thanks for having me.

 

Geoff Allix  56:23

With that, I’d like to thank you all for listening to this episode of Living Well with MS. Remember, there is a wealth of information at overcomingms.org including show notes and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips. Connect with other OMSers in your local area though our OMS circles programme, and learn about the latest research going on in the MS world generally and related to OMS specifically, I encourage you to register on the site, and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode. And please feel free to share it with others who might find it of value. Let us know what you think about the podcast by leaving a review. And if you have ideas for future episodes, we’d love to hear from you. So please contact us via our website overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and living well with multiple sclerosis. I’m Geoff Allix and I’ll see you next time.

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Trevor's bio:

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