S4E33 Disrupt Move and Transform with Kathy Chester

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, Geoff Allix. 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 at 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 us a review wherever you tune in to our podcast. Have questions or ideas to share? Email us at [email protected]. Or you can reach out to me directly on Twitter @GeoffAllix. We’d love to hear from you. Finally, don’t forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. And now, let’s meet our guest for this episode. Welcome to the latest edition of the living well with MS podcast. Joining me on this edition is Kathy Chester. Kathy is both the host of the Move It or Lose It podcast, as well as being a certified fitness trainer for individuals for groups for prenatal fitness training, as well as an MS fitness trainer as well. And Kathy actually has both MS and rheumatoid arthritis. So she brings a great deal of insight into this area. And it’s great to have her on the podcast. So welcome to the program, Kathy. And thank you very much for joining us on the Living Well with MS podcast. So you’re a pretty dynamic member of the MS community from being a podcast host to fitness program guru. But before we talk about all of that, I wanted to discuss a bit about how you got to where you are today. So could you tell us a bit about yourself and where you’re from and so on? 

 
 

Kathy Chester   

Sure. So my name is Kathy Chester, and I’m from Royal Oak, Michigan, nowhere near you. We are very, very, very far apart. So I was diagnosed with multiple sclerosis in my early 20s. And before the MS diagnosis, I was actually diagnosed with RA (rheumatoid arthritis). And so throughout my diagnosis so young, I never understood when we got the glossy pamphlets, and we’re told, you know, choose. And that was confusing to me. Also, what on earth when you’re that young is multiple sclerosis, right? No one knew what it was. And the idea that you would just go to bed and rest. And that didn’t make sense to my brain, I was always coaching, I was into a lot of athletics, I was always very much on the go. So knowing what I knew about that, I didn’t understand how your body would not atrophy if you’re just lying down or sitting all the time. So it didn’t make sense to me. So I kind of thought, This is rubbish, I’m going to run this disease out. So I started doing some workouts and things like that nothing that was safe for MS. By the way, in the 90s. We didn’t know anything like that. So I started to do some things. And then as the MS changed, and as I grew in my knowledge and more certifications, then I was able to understand what moves for us that needed to be done to strengthen our bodies, our legs, the foot drop, keeping the MS hug away, and things like that. So I started working with the MS and the autoimmune world. 

 
 

Geoff Allix   

And I believe you had optic neuritis as one of your symptoms. It is quite common symptoms. You need to actually go to the neurologist because something wrong with the brain getting the signals from you. I mean, does that inform the work you do with your podcast and fitness program? 

 
 

Kathy Chester   

Definitely. So that was like you said so there was tingling, there was numbness in my hands, my feet, my legs in the beginning. And I would chalk it up to oh, I probably did this too much, or who’s going to think MS, that never even entered my mind. What finally brought me and plus I’d already had the RA diagnosis, which was definitely there. But the MS was missed. So what really finally was the nail in the coffin was losing my eyesight. It’s always on a holiday. I never understand that one. But it was losing my eyesight on Mother’s Day. So the next day I went to see an ophthalmologist. And he was just the nicest man and young and just looked at me and said, you know, he found the optic neuritis and then sent me from there asked me about other symptoms that I had. And I thought he’s living in my house. How does he know this? So he knew about kind of in the maintenance side that sent me to a neurologist at the hospital. I started, because what did we do back then? We did steroid infusions. So I started on those, and then went from there. So through that, I think, the empathy and going to crazy support groups, I went to a support group, actually, in a scooter shop, my first one in my 20s. That was like, this is depressing as I can imagine. So that really started my empathy and wanting to work more with new patient. So I would be in getting my infusion. And they would ask me, Are you feeling well enough to talk with a new patient that was diagnosed? So that became something I really enjoyed, hence, the things that I do now. 

 
 

Geoff Allix   

And so I don’t know how much you know about Overcoming MS. But it’s based on sort of scientific research for lifestyle interventions, as well as medication. It’s not saying don’t take medication. But it’s also saying that there’s a part to play in exercise, but also diet, lifestyle. So how did you sort of come to understand that these factors affected you? I mean, was it it’s almost like personal experimentation, trying things out? 

 
 

Kathy Chester   

100% especially back then, because back then if you remember, they would always say there is there’s no diet, food does not affect you. Again, that didn’t make any sense to me. So because I realized that “wait, when I eat this, I feel worse. When I eat this, I don’t feel as well,” Because of my background, I had a pretty good diet as far as the vegetables and things like that. But I didn’t understand gluten. I didn’t understand that I needed to stay away from all dairy. So there were things I didn’t I didn’t really understand. So I think learning more now and the philosophy that you guys go by with I know very well tends to lean itself much more what I believe. So that’s really where I’m at. 

 
 

Geoff Allix   

I was diagnosed in I think 2016. But my dad had MS. He actually died in 1998. You don’t die of MST, but they said yeah, but you probably wouldn’t have died if you didn’t have it, because complications. He was very much the same. Yeah, no, there’s no diet, he wasn’t encouraged to do more exercise. There were no real medication. There wasn’t really much. He was very much aware that  stress had a factor. But there was certainly nothing like we have nowadays and the amount of different medications on the market is huge and, much more understanding, I think that is starting sort of this healthy diet and lifestyle is starting to almost get to the edge of being advised to people. 

 
 

Kathy Chester   

100% that allows you to then get rid of a lot of the medications that were thrown at us, right? Yeah, you go and it’s like, here’s a new one. Here’s another one. So it allows us because of the eating better. And the philosophy that I know you go by that I personally believe in is it allows for us to feel all of a sudden better, and then you realize, oh wow, this played a lot into why I was feeling so bad. And why I wasn’t sleeping. Why I wasn’t able to function the way I can now. 

 
 

Geoff Allix   

Yeah, if I find the dairy a really fascinating one because that’s when I think will be really resisted for them to officially say because it’s still in this country and official food group is dairy. And it was only when someone said, ‘But it can’t be normal to have breast milk as an adult. And it can’t be normal to have breast milk from another species that we didn’t evolve to do that.’  

 
 

Kathy Chester   

I get that a lot with my clients I train. It’s almost like a bargaining, you know, like, well, what if I just do cheese? There is a bar and I get it, because right we have it. So we get it. There are things that we’d love and but if you want to feel good, it’s a trade off. 

 
 

Geoff Allix   

Yeah, I did used to like cheese, but I wouldn’t. Yeah, now I and that it is difficult this country because we have our cup of tea with milk in it. And so now I’ve switched to coffee, which works much better with like oat milk. So speaking about your fitness program, so you’re the creator of Disrupt, Move and Transform, a specialized fitness training program delivered online for people with MS and other autoimmune conditions. So can you tell us a bit about the program and how you started how it came to be? 

 
 

Kathy Chester   

Yeah. 100%. So what I found is that, as I looked more and more into what was provided for us, what we wanted to program, what I found a lot of were big programs. And what would happen is, you’d be sent a video, right? So when we have MS, we can’t do certain things, right? We either cannot get out of the chair. Or if we are, our feet are turned in weird ways. We can’t come down and sit down properly. So the idea to me of handing someone a video with multiple sclerosis, and saying do this, and no one watching them, it made no sense to me, I could not understand that. So I needed to come up with a program, I’m still in the midst of promoting it and trying to get people to understand I’m with you, I don’t leave you I’m here the whole time. And if I see your foot turned a different way, or you’re starting to lead, a lot of times, when we exercise, and you’re watching a video, you’re trying to do the same thing they’re doing. So let’s say you’ve got a band and you’re doing a shoulder press, you’re not understanding that the weaker arm is here, still, and you’re taking the stronger arm and you’re doing this, right. So I’m able to watch and say Stop stop, or to stay where they’re weak your arm is until this gets stronger, and that stronger arm is not going to go up any higher. We’re gonna wait. And we’re going to keep working with this arm. So those are things again, I would say you can’t teach it unless you have it. Right? We know it because we have it. So I’m better able to catch those things and work with them. So and not just do the one I want. But I also do it via Zoom, in a sense, where there could be seven to 10 people, and I’m showing seated moves and standing moves. I’m able to watch and say ‘Hold on. Stop that. Let’s do this instead.’ So I can watch always asking, ‘Is it cool enough where you are? Do you have water?’ And I think that’s a personal touch that I’m able to give rather than throwing a video. 

 
 

Geoff Allix   

So it’s online, but it’s in person, if that makes sense. 

 
 

Kathy Chester   

I do have patients that come into the studio that live near me as well. 

 
 

Geoff Allix   

And just to mention, there are loads of links to Kathy’s offerings, and also podcast in the show notes. So do check out the show notes because there’s links to everything there. So before you moved focus to Disrupt, Move and Transform you were a successful fitness trainer, and you actually took a step back financially to serve the MS community and other autoimmune conditions. So how did you and why did you make the choice to to risks known financial income to jump into an unknown market? 

 
 

Kathy Chester   

Well, fortunately, we had a chance to get to know each other and chat before. Right before COVID started we had realized that we were finally at a point growth enough that investors were wanting to do a second gym. And all I can say is that terrified me, because with my disease progressing a bit, and my autoimmune, my MS clients already trying to fit them in and not having the space in the room. When COVID happened, I was able to really what we all quieted down, we had to. So I was able to sit back and really think about what do I want to do that’s going to make an impact? And what feels good, and what can I do for the MS community? And so speaking to my husband, and taking a huge financial loss, but this feels good, this feels so much better when you’re done with what I do. And I get a phone call or text that says, I stood in the shower for the first time. I still cry. I still get weepy. It’s just is. I can’t explain enough that rewarded in that. 

 
 

Geoff Allix   

Yeah, it’s a bit different. Just saying I can benchpress this much. You make people’s lives better. So it if people want to learn more about Disrupt, Move and Transform, what’s the process of getting involved and contacting yourself. 

 
 

Kathy Chester   

So all they have to do is go on to the website. So which is moveitorloseitpodcast.com So if they go on to that they will see all this whole structure of what that is. And they are always welcome to DM me and ask me questions, I’ve done lots of phone calls with with different clients to really explain it. As you know, cognitively we can, we can forget things quickly. So I like to be able to really explain it so that there’s an understanding. So if it’s a phone call that they need, and DM me after an email 100% That’s always welcome. 

 
 

Geoff Allix   

So you’ve mentioned a bit there about the podcast and Move It or Lose It podcast now in its second season. So can you tell us a bit about your podcast and why you started decided to start? 

 
 

Kathy Chester   

Again, have you on it soon. But now, so what I did is I wanted to do a podcast for a long time. The gym just took so much of me. And so what I did is I listened to several different podcasts for years, and trying to get my idea of what I want it to be more conversational. And what I really decided is I wanted my guest with the autoimmune disease, a lot of them have MS. And then to get something that is inspirational, something that they do, and then have a doctor come on and really talk about the issue. So for example, I’m going to be talking about cannabis and MS. So I have a patient that is using cannabis and how it works for them. And then I’ll have a doctor who will then discuss it as well. So that we really have that. That more conversational, like what we’re doing. And then I have a doctor that will then talk to me about the effects of it, and how does it help with spasticity. And are we to drink a gallon of CBD? Because we hear that and I’m like, that doesn’t make any sense. That’s kind of how I started doing it. So I’m enjoying it tremendously. 

 
 

Geoff Allix   

Yeah, I mean, I personally find I just learned so much as well. I’ve recently interviewed Misha, Mikhail, he is a cannabis doctor. It’s fascinating actually, in this country, because we have a very old fashioned can’t even really get medical cannabis.  

 
 

Kathy Chester   

My clients will say mail it to me. I’m like, I’m gonna go to prison.  

 
 

Geoff Allix   

Well, now I was told this and because I do a lot of work in Seattle. And I was told that they said, oh, you’d be able to take this back with you because you’ve got MS. And I said, no, I wouldn’t. Yes, so hopefully, things might be moving. So as another thing that came out of the podcast is you have a group called Women Who Disrupt MS. How did that start up? And what are the goals of that group? 

 
 

Kathy Chester   

So what happened during COVID, you really became connected to a lot of us who had MS. I think it was a time because we are shut down that we really connected and in that, I found a lot, especially through the podcast, a lot of I did, I’ve done it with men. So I’ve been in men’s groups where I’ve worked with just the men. And I found a large group of women newly diagnosed, and women who’ve been diagnosed for 30 years, I have a woman who does the group with me. And we do this every third Wednesday. And we really just sit down. And I’ll tell you, I’m absolutely stunned by the amount of women that are in this group. But the newly diagnosed is stunning to me, and their openness. But there’s still the fact that we are still in the same issues like the workplace stuff. We can talk then about food. But still, that’s been a very rewarding thing to be able to have these women come on, we’ve developed a Facebook group that’s private that they can discuss things. And it really tried to keep it encouraging. So as you know, sometimes you’ve always got that one person that will take over. And so you’ve got to kindly moderate and say, ‘well, now we’re gonna give this person a chance to chat.’ So really keeping the topics that are very on the forefront of the movement and MS, like the next one’s going to be about about work the workforce. And as we’re working, when is that the time to tell your employer? When is that the time to tell your coworkers things like that? 

 
 

Geoff Allix   

And so if people are interested in joining Women Who Disrupt MS, how would they go about that? Is it all available in that same place? 

 
 

Kathy Chester   

We collect emails, once we have your email, you’re immediately sent a link the day before, so that you have it. And also it works as a reminder, again, we need reminders, alarms, and everything, right? So just as a reminder to once we have the email, so we can then send an email as a reminder, and we also promote it on Instagram and Facebook so that so that the clients patients can see it, the women can see and say, ‘oh, yeah, don’t forget this.’ So that’s, again, welcome. DM me is the best way. And then I can get your email and we go from there. 

 
 

Geoff Allix   

So this is sort of a multi topic podcast is actually and there’re multiple reasons people might want to check it out. It could be that it’s the Women Who Disrupted MS group, it could be they’re interested in listening to podcasts, they’re interested in your fitness programs. So I’d like thank you very much being a guest. I mean, I would definitely encourage people to have a look at the show notes. It might be they’re interested in your podcast, it might Disrupt MS group. So yeah, have a look at all the shownotes for all the amazing stuff that you’re doing. And there’s links as information in there to get more information about you. And I’d like to thank you very much for joining us on the podcast.  

 
 

Kathy Chester   

Absolutely. Thank you so much for having me. 

 
 

Geoff Allix   

Thank you for listening to this episode of living well with MS. Please check out this episode shownotes at overcoming ms.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@overcoming ms.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. 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 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 overcomingms.org. While you’re there, don’t forget to register for our monthly e newsletter so you can stay informed about the podcasts and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time. Living well with MS family of podcasts is a 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 expressed are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity its affiliates or stuff.