Get Out There... AND LIVE

Summary

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The MS Gym Podcast: "Get Out There... AND LIVE"

Co-hosts: Brooke Slick & Jodi Feltham
Guest: Sarah (MS Gym Member, UK)
Date: January 8, 2025

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Episode Overview

In this episode of The MS Gym Podcast, co-hosts Brooke Slick and Jodi Feltham have an in-depth conversation with Sarah, an MS Gym community member from Lancashire in the northwest UK. The discussion explores Sarah’s decades-long journey with multiple sclerosis (MS), her adventurous spirit, adaptability, and the tools and routines she uses to live a vibrant, self-determined life—despite her diagnosis. The conversation touches on themes of resilience, innovation in MS management, the importance of social and family support, and the value of seeking out joy and connection.

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Key Discussion Points & Insights

1. Sarah’s MS Journey and Independent Spirit

• Early Symptoms and Diagnosis

  • Sarah recalls experiencing her first symptoms at age 11 (a persistent ankle issue) and later, at 13, a bout of Bell’s palsy. Despite these early warning signs, she continued to lead a busy and fulfilling life, excelling at languages, traveling, and embracing new experiences.
  • “I just lived my life as you live your life and that was it really.” (Sarah, 01:17)

• Adventurous Young Adulthood

  • Sarah spent time studying in Germany and traveled solo through South and Central America, volunteering and teaching English.
  • “I really, really enjoyed it. It was just a really good time.” (Sarah, 03:14)
  • Her international experiences shaped her self-view and resilience.

2. Life in the UK and Diagnosis

• Work and Onset of MS Symptoms

  • On returning to the UK, Sarah joined her family’s demanding catering business, which ultimately aggravated her MS symptoms due to heat and physical strain.
  • She was officially diagnosed with MS at 28 after experiencing increasing weakness and mobility difficulties.

• Early Management and Family Business

  • Sarah initially tried medication (Copaxone) and soon after, her family sold their business—a shift that coincided with her growing physical challenges.

  • “I walked really badly. Really, really badly... I think I got a wheelchair almost as soon as we got married.” (Sarah, 08:25)

3. Treatment Innovations and Progress

• HSCT (Stem Cell Therapy) in Mexico

  • In 2017, Sarah underwent Hematopoietic Stem Cell Transplantation (HSCT) in Mexico, a pivotal intervention in her journey.
  • “Post-HSCT, I’m an awful lot better. My eyesight is a huge amount better. My tremors are a huge amount better. My walking’s quite a lot better.” (Sarah, 09:41)

• Discovering the MS Gym & Community

  • Sarah became an early member of The MS Gym, crediting the program—and its founder, Trevor—for helping her regain function and confidence.

• The Mollii Suit: New Technology for MS Symptom Management

  • Sarah uses a Mollii Suit (a neurostimulation suit akin to a wearable TENS unit), describing transformative cognitive and physical effects.
    • “It just makes me really clear... my eyesight just like, oh, you look around and it’s like... But when I’ve done my Mollii suit, I can see families.” (Sarah, 12:35)
  • She typically uses the suit three times a week, combining the sessions with MS Gym exercises for maximum effect.
  • The suit also enhances her core strength and gives her a stronger sense of bodily awareness.

4. Adaptive Tools and Embracing Life

• Mobility Aids & Remaining Active

  • Sarah describes her fast power chair, scooter, and her determination to engage in social and recreational life, including going to concerts and outings with her husband.
    • “MS is not managing me, I’m managing it by getting all these things together that make a big difference to my life.” (Sarah, 15:23)
  • Sarah sees her adaptive tools—Mollii suit, MS Gym, mobility aids—as empowering, enabling her to take charge.

• Support Networks

  • Sarah shares that, in addition to her husband and family living nearby, she has a network of local friends and enjoys a supportive, community-oriented town.
  • Her current dogs, while not assistance trained, provide companionship and motivation to get outdoors.

5. Living a Life by Design, Not Diagnosis

• Attitude & Mental Health

  • Sarah stresses the importance of remaining active, social, and positive, even on difficult days. Nature, social outings, and her dogs are her go-to strategies for boosting her mood.
    • “Going outside... walking the dogs out in the wind and the rain.” (Sarah, 20:10)

• Perspective on Disease-Modifying Therapies

  • Reflecting on the evolving landscape of MS treatment, Sarah notes that while new drugs offer options, there’s no “one size fits all”—everyone’s MS is different.

    • “How you manage it, isn’t it? It’s how you, how you live your life with what you’ve got.” (Sarah, 23:54)

• Advice to the Newly Diagnosed

  • When asked what she’d tell someone newly diagnosed, Sarah’s advice is direct and uplifting:
    • “Get out and live your life. Active as you can be. Be as social as you can be, as happy as you can be.” (Sarah, 24:36)

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Notable Quotes & Memorable Moments

• Sarah on HSCT’s impact:
  “Post-HSCT, I’m an awful lot better. My eyesight is a huge amount better. My tremors are a huge amount better. My walking’s quite a lot better.” (09:41)

• On using the Mollii suit:
  “It just makes me really clear... my eyesight just like, oh, you look around and it’s like... But when I’ve done my Mollii suit, I can see families.” (12:35)

• On resilience:
  “MS is not managing me, I’m managing it by getting all these things together that make a big difference to my life.” (15:23)

• On advice for the newly diagnosed:
  “Get out and live your life. Active as you can be. Be as social as you can be, as happy as you can be.” (24:36)

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Timestamps for Key Segments

• [00:48] – Sarah’s first symptoms and early years
• [03:01] – Traveling and volunteer work in South America
• [05:53] – Entering the family catering business and MS symptom escalation
• [08:21] – Initial management and transition to using a wheelchair
• [09:22] – HSCT in Mexico and resulting improvements
• [10:23] – Finding the MS Gym and early community involvement
• [11:03] – Mollii suit experience and transformative effects
• [15:23] – Philosophy of managing MS
• [18:20] – Role of social and family support
• [20:10] – Coping strategies for hard days
• [22:05] – Reflections on advances in MS therapies
• [24:36] – Sarah’s advice to newly diagnosed listeners

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Episode Tone & Closing Thoughts

The conversation is candid, warm, and empowering—reflective of both hosts’ positive support and Sarah’s adventurous, pragmatic outlook. Listeners walk away with a sense of Sarah’s undiminished zest for life and practical hope: that living well with MS is possible through adaptability, self-advocacy, and the embrace of new opportunities and technologies.

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Transcript

[A]

Join us for a new season of the Ms. Gym podcast and learn from Ms. Veterans and newbies alike as they share their own stories and how the Ms. Gym has shaped their journey towards healing. Hello, Mississippi family. So glad you could join us for another episode of the Ms. Gym podcast. I have so enjoyed getting to know our members a little bit better and today we are once again traveling over the seas to talk with Sarah. So, Sarah, thank you so much for meeting with me today.

[B]

Okay, you're welcome.

[A]

So Sarah, where are you joining us from?

[B]

I live in the northwest of the uk. It is a town called L in Lancashire.

[A]

Perfect. So, Sarah, obviously this is the msgym podcast. So can you tell us a little bit about how Ms. Showed up in your life? How did you suddenly figure out something's not quite right?

[B]

Okay. When I was 11, I was doing cross country running at school and I twisted my ankle and I had it looked at and they put me in plaster and nothing ever really helped. So I was always struggling with that. I carried on at school. I just lived my life as you live your life and that was it really. And then when I was 13, so again a couple of years later had a Bell's palsy that was just a facial palsy, so my eye was a bit wonky and what it was. And then it all went away. It all went away. I finished school, I did my A levels, I did A degree, I did some of it in Germany, I worked in Germany. So it's quite an Exciting. Exciting for sure.

[A]

That sounds very exciting.

[B]

It was quite exciting. So that was that. And then I went on to university from that and I did German and marketing and that was quite exciting.

[A]

What drew you to Germany then?

[B]

I was always really good at languages at school.

[A]

Okay.

[B]

I used to. We always had sort of foreign students to stay at home during the summer holidays and that sort of thing. So I was always interested in people who came to stay and we had French and we had Spanish and we had German and we had all sorts. I just really like languages.

[A]

Were you in Germany when you started having symptoms again or were you back home at that point?

[B]

No, no, in Germany I didn't really have any symptoms at all. And what else? Yeah, then I came home from uni and then I went away traveling and I went to South America on my own and it was good.

[A]

You are an adventurer.

[B]

I just traveled about. I started in Mexico and went down through Costa Rica and that sort of place and then I went to Peru. I taught English and I worked in an orphanage as well. I didn't work there, I just volunteered. But it was super. I really, really enjoyed it. It was just a really good time.

[A]

Wow. It sounds like you had many adventures in probably your early 20s. You got a lot of life experience. And what drew you back then to the uk?

[B]

Zen and I think my husband too, but I didn't know, so that that's what happened, really, I think. And I thought, yeah, I've done traveling, really. I want to start to do something sensible rather than just messing about.

[A]

Well, you know what, you might, you might say it like that, but I'm sure those children that you taught actually, you were. You were doing something very kind and generous in that. I think, I think you were. You were contributing. You were contributing to other people. So I, I don't think that it was on in whatever the word is. It was. It still was sensible that you were giving to other people.

[B]

Yeah, and I enjoyed it. And it. I really, really enjoyed doing it. And it's made me who I am now, I suppose.

[A]

But that's awesome. So you, you went. You did all this traveling, You. You did volunteer teaching. You went back to the uk and I'm assuming you got married or started. You kept dating.

[B]

Yeah, yeah, we kept sort of dating and I couldn't find a job in the uk. It was really tough to find work. And my, My husband, my mum and dad live locally, so that's quite nice.

[A]

Okay.

[B]

And his parents have lived here forever. He was, he. He wasn't. Yes, he was. He was born in Blackpool, fairly luckily to us now, and my mom was obviously, and Zen was born in Blackpool as well. So there was still quite a draw to come home, I think.

[A]

Okay. For sure. It sounds like you were. That you were the adventurous and the travel. That you had the travel bug.

[B]

Well, yes, yes, I did a little bit. Zane and I have traveled quite a lot recently in the past, so. Yeah.

[A]

Okay. All right. So you're. So you're back home in the uk. When did, when did you start experiencing other symptoms?

[B]

I was work. That's what happened. We. I didn't get a job in the uk. I joined a business with my mum, dad, so it's a family catering business in the uk. That was hard work, physically. It was hard, really hard. It was seven days a week, late nights. I eat all the stuff. And you had to do everything from talking to the customers to making the batter, cooking the fish, taking the money, doing the shopping. It was hard work. And then I just started being really, really weak in my legs and hips and it was just too hard because I was working in a hot kitchen as well. So that was not a nice place to be on your feet the whole time lifting things. So that was that. So I just got diagnosed with MS, basically. I was about 28, I think.

[A]

28. Okay. So probably at the time, if you weren't diagnosed it, you know, now we know that heat can really aggravate Ms. And make things worse. So if you were working in a hot kitchen, like, no wonder your weakness would be amplified, that things would just be getting worse and worse.

[B]

And it was all the things, of course, because I was on my feet and absolutely walking badly and lifting and carrying. Oh, are you okay?

[A]

So, 28 diagnosis. What, what happened after that? Did, did your doctor put you on medication? Did you decide not to work? What, what was the next step for you?

[B]

Yeah, I, I did take Capaxone for a bit and I suppose. I don't know whether it helped or not. And I wasn't, I wasn't working. It was a family business. We just sold the business.

[A]

Okay.

[B]

So that. Because my mum, dad, I don't know, in the 80s now. So it.

[A]

Okay, that makes sense.

[B]

It was, it was quite a work for sure.

[A]

No, that makes, that makes sense. So what did the next few years look like after. After your diagnosis?

[B]

I was not in a good way. I walked really badly. Really, really badly. I struggled. Yeah. I think I got a wheelchair almost as soon as we got married. So that was that. And I walk in with two sticks, but I didn't move well at all. And I just gradually got more and more disabled. And I had HSET in 20s, 17. So that's seven years ago now. Yeah. I'd had HSCT in Mexico and that was. I was having treatment. But it was a really good time. It was enjoyable. I went with my husband. Oh, it was just nice to be in. In a sort of environment. We weren't in a hotel, we were in a flat. So we were just living a life for four weeks, even though I was broke. Someone.

[A]

So you had, you, you went and you had your stem cell done. What, what, what came of that? Like, do you feel like it maybe slowed things down a bit? Did you see any, any help, any stop to your progression?

[B]

Yes, yes.

[A]

Okay.

[B]

I, I couldn't do Trevor's exercises now. Pre hse. No way. Well, I might have done, but I'd have been really frustrated and crossed that I couldn't do it and it would have been like that. So, yeah, post hscd, I'm an awful lot better. My eyesight is a huge amount better. My tremors are a huge amount better. My walking's quite a lot better.

[A]

Oh, that's wonderful. I'm glad to hear that. Okay.

[B]

I work hard though, and Trev really makes a big difference.

[A]

That's wonderful to hear. How did you go about finding the Ms. Gym then?

[B]

From HS?

[A]

Okay. Other. Other people? Well, 2017. Because the Ms. Gym started. The Ms. Gym started in 2017. So that's. You found it, you found it kind.

[B]

Of right around the time I found it quite early.

[A]

That's great. That's wonderful.

[B]

So I'm still here and I've now got a Molly suit. Have you heard of those?

[A]

Yes, I heard. So from what I mentioned, a Molly suit is like. Well, I guess it's a suit that you put on and it helps combat some spasticity in your body.

[B]

And it, it's a bit like a huge giant TENS machine.

[A]

Okay.

[B]

Like a, A wetsuit really. It looks like a wet. But it's got 10 tens machines at different areas of the.

[A]

Oh.

[B]

And I think that's fantastic.

[A]

That's great. Do you wear it, do you wear it all the time?

[B]

No, no. I do one hour sessions three times a week probably.

[A]

Okay.

[B]

And when I'm doing my Molly suit things, I combine it with doing Trevor stuff and other things. So it's, it's useful. Very useful.

[A]

I think that's great. So does it. It helps with like arm movements or leg movements. Like it helps you bend limbs easier.

[B]

I think it's a bit like the hyperbaric oxygen chambers. Have you heard of those?

[A]

I've heard of them, but I don't have any personal experience at all.

[B]

I don't either. But I know in the olden days the Ms. Around here definitely used hyperbaric oxygen. And they say, I think they just get a feeling of elation, of joy. It just makes me really clear.

[A]

Really? That's, that's interesting that it gives you mental clarity.

[B]

Absolutely. And my eyesight just like, oh, you look around and it's like, how dirty is my house? How can this be so dusty that I don't see it? But when I've done my Molly suit, I can see families.

[A]

That it. That is so interesting. I've certainly. I've only heard very small snippets about the Molly suit. But I never knew that, that it had those kind of effects. I. For some reason I thought it, it had to do specifically with leg spasticity and walking. But that's, but that, but that's fantastic.

[B]

It definitely helps your Core for sure. And I've had mine updated because I think I was getting to the stage where doing deep breathing stuff, I could almost feel like my Molly suit was working before I'd connected the things, connected the power. So turned it on, basically. So just having the physical tightness of wearing a tight suit with things and it's obviously, it's skin on skin, you don't. So it's. You can really feel it and I can feel that my breath activates the. I don't know, I can just feel every movement in my body. It's bizarre.

[A]

Oh, that's wonderful.

[B]

Wonderful.

[A]

So my, my question is then, so you said for three times a week, is it something that you rent or is it something that's in your house.

[B]

Or is that I deliberately.

[A]

You. And so. So the protocol is just three hours a week at this point?

[B]

Yes, to start with, they did it a bit more, but I think my body's got used to the sensation of the suit so I think I can sort of activate it and my body is so much better afterwards. I can stand up to feed the dogs.

[A]

Wow. That I can stand up and do.

[B]

My trousers up, do my zip and my button and do that in standing and that's like.

[A]

It's wonderful. Yeah, I guess it's a more. It's a newer technology, but that'll be exciting over, over time to see how it, how it plays out. Like, I'm in Canada and I don't, I don't imagine that that's approved in Canada. Ken seems to be behind in a lot of things that. But that's exciting though, that it works so well for you and that the after effects, like you said, you benefit even after you, you take the suit off.

[B]

I do. And it's the combination of things that make a big difference in my life. And I've always been determined and been a bit sort of outrageous about certain things, but just going out with the dogs and we live in a really nice place and I've got a fast chair, so it means that Ms. Is not managing me, I'm managing it by getting all these things together that make a big difference to my life.

[A]

So the Molly suit is one of the tools that you have. The Ms. Gym is another tool you have. Getting out and enjoying, obviously your dogs give you a lot of joy and you have, you have. You said you have a scooter or power chair to.

[B]

Is super great. And I've got a little power chair that I use when I go to gigs with Zenin, so I can Be in the top deck on the.

[A]

Oh, good.

[B]

Platforms and whatnot. And my big chair has got racy seats, so I can be up on top. So when they're at the encore with their hands in the air, I can be up there as well.

[A]

Oh, that sounds. That sounds fantastic. That's great. So when. When you were diagnosed with ms, had you heard of other people? Like, you're only. You said you were 28, but was.

[B]

My. My grandmother's cousin had Ms.

[A]

Okay.

[B]

My father's cousin had MS, so there's been a bit of Ms. In the family.

[A]

So you. You had a lot of exposure to Ms. Already. So. So it wasn't anything new. Was because you have family members and obviously older family members. Was that diagnosis, like, really scary for you or what were. How did you first feel about getting in?

[B]

I wasn't exactly happy. No, of course I didn't. I didn't think it was Ms. To start with. And then I thought, maybe it is. And you just put it out of your mind, don't you? You don't want it to be Ms. You don't think it could be. It is what it is. You just got to make the best of what you can do for sure.

[A]

Now, what does your support look like? Obviously, your. Your dogs can't offer you too much physical support, but they're a huge part of your life, and I used to.

[B]

Have an assistance dog.

[A]

Oh, you did have it. Okay. You did have an assistance dog. Okay.

[B]

Mine are not capable of being assistance dogs.

[A]

No, the ones you have now. Oh, okay. They're too chatty. Okay. So you have. You have your dogs, you have your husband. Do you have any other friends or family? Like, do you have a. Do you have a support network near where you are? What does your community look like for you?

[B]

I've just got some friends. If I go out in Litham, I've got some friends that I meet for coffee or we go to theater in Litham and you see people there. So it's just. It's just a friendly place, I suppose. Mum and dad don't live far away, so I can easily get them. I can go there on Friday lunchtime. Normally not today, but normally.

[A]

Okay. Okay. That's nice. It's nice having friends and family nearby. And obviously there everyone's very understanding of any accommodations that you need. And it sounds like you have some great power. Assistance there to help you get out there and do what you want to do.

[B]

Determined to do what I want to do.

[A]

That's fantastic. That's. That's what we all need to do. But it's great that you are determined because there's a lot of people that when the challenges come, they just kind of isolate and, and they don't go out and they don't, they don't live their life. But it sounds like, it sounds like with all your years of doing travel and being on your own, like it's, it's, it's part of your own DNA. It's part of who you are as a person. Like you're going to keep. You're going to keep living, even if it looks a little bit different. Do you have any plans now to travel or upcoming event?

[B]

We are going to Wales next month, so a few days.

[A]

Okay, that's great. Is that now, is that, is that a plane trip? Is it a driving trip?

[B]

No, it's a shortish driving trip.

[A]

What do you do when. When maybe things feel harder for you? Like when you have like bad Ms. Days or you just feel kind of down in the dumps? How do you, how do you move from a really difficult space to a more positive one for yourself?

[B]

Going outside? I think walking the dogs out in the wind and the rain.

[A]

In the rain. I guess that's a hazard of living in the uk.

[B]

In Canada too?

[A]

Pardon?

[B]

It rains in Canada.

[A]

Yeah, but not like, not like the uk, but yeah, no, we, we. Well, we get more snow, but not yet, thankfully. So. So being out, being out nature, being out with your dogs, like.

[B]

Yeah.

[A]

That really lifts your spirits.

[B]

Yeah. Going out for coffee, just socializing. Being out and about. Going to concerts with Leon when he's singing his head off and they're all. I've got ear. Earplugs.

[A]

Okay. Do you, do you find actually that they're really loud noise? Do you find the crowds and the loud noise, does that aggravate your symptoms?

[B]

Like, does.

[A]

Do you get overwhelmed?

[B]

No, I don't think. I don't think I do. But I'll go in my little chair and it's still quite fast. And I just put the same. Had a bike shop, so it got bike lights on my wheelchairs and he likes messing about with them.

[A]

Okay. You've got like a hybrid chair just.

[B]

With ramp and Galway. So.

[A]

Yeah, that sound. That sounds like a lot of fun. Now you've had, you said you were, you were diagnosed in like the late. I have here. Diagnosed in 1989.

[B]

Yeah.

[A]

You've had, you've had Ms. For a long time now. Like 35 years. 35 years. That's a, that's a long Time you're like an ms, an Ms. Veteran and the landscape looks a lot different from when you were diagnosed. Like you said you were on Capaxone and, and that probably was the only drug in the late 80s.

[B]

Yeah.

[A]

So now they're, now for people that are diagnosed, there are like up to like 20 drugs. I don't, I don't even know the amount, but there's at least 20 different disease modifying therapies.

[B]

There's also, I think a lot of them are more trouble than that with the side effects.

[A]

Yeah, for sure. There, there's, there's a lot, there's a lot of debate and there's, and because a lot of them are new, they don't, they don't know exactly what's going to happen long term.

[B]

So say I went to an Ms. Meeting, a local Ms. Meeting and it was a dinner thing, so we all went there. But the people there were nowhere near as disabled as they used to be. When I used to go in the olden days, I just noticed that. And they're obviously all taking some DMDs, but I think a lot of it is a waste of time.

[A]

Yeah. Choosing medication, it's, it's such a, it's such a personal choice. And, and the thing, the thing is that everyone's Ms. Is so different and I, I've had the same thing. I've met people that have done the same treatments that I, as I have done and I started out in much better shape and they were worse off and we did the same drugs and it switched. I got much worse and I progressed and they got so much better. So everyone's body is so different and we all respond so differently. So it's, there's, there's no way of saying which medication would work and maybe some people would do better without medication at all. Like, there's no, there's no hard and fast rule. It like it, it really is a snowflake disease that everyone's going to respond.

[B]

Differently and how you manage it, isn't it? It's how you, how you live your life with what you've got.

[A]

Yeah, that's, that's true. And that, that's definitely, that's definitely the challenge. You know, it's looking sometimes, sometimes it's helpful knowing that everyone's different and everyone's disease looks different and sometimes it's hard because we can get into, you know, to the comparison thing and thinking that. But I think what, what you're saying though, you need to get out there and live your life regardless what other advice would you give to someone who is maybe newly diagnosed? Like what? What would you say because you've got a lot of. A lot of years behind you with this diagnosis?

[B]

I would say get out and live your life active as you can be. Be as social as you can be, as happy as you can be.

[A]

Well, thank you, sir, again for taking the time to chat with me today.

[B]

Thank you very much.

[A]

Be sure to check out our show notes to learn more about this episode and how to connect with our online community.