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Move It or Lose It | Episode 138 | Adam Powell: MS Questions & Myths answered - Move It or Lose it - The Podcast | Wave AI Podcast Notes

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Move It or Lose It | Episode 138 | Adam Powell: MS Questions & Myths answered

Move It or Lose it - The Podcast

Wed Oct 08 2025

Summary

Move It or Lose It | Episode 138 | Adam Powell: MS Questions & Myths Answered

Date: October 8, 2025
Hosts: Kathy Chester & Adam Powell

Episode Overview

In this lively and candid episode, Kathy Chester teams up with Adam Powell for the first of their new monthly Q&A podcasts, aiming to tackle the most common questions and persistent myths around Multiple Sclerosis (MS) and other chronic illnesses. Both hosts share their personal experiences, address concerns they hear most from their support groups, and debunk the misinformation that often circulates online. They also dive into key social and emotional challenges, such as the fear of losing friends, stigma around mobility aids, and the ongoing process of accepting and adapting to MS.

Key Discussion Points & Insights

1. Why “Don’t Go to Google” Is Sound Advice

Mixed Messages & Anxiety: Kathy warns newly diagnosed listeners against immediately searching symptoms and outcomes online due to “mixed messages” and unvetted information (02:00 – 04:00).
Adam’s Tip: Adam recommends sticking to credible sources like university or hospital websites over anecdotes on platforms like Reddit (04:07).
- Quote: “You can find whatever you want to find on there. Whatever you’re focusing on, that’s what you’re going to click on… it’s a death sentence… you’re gonna be in a wheelchair… You gotta wade through it...” – Adam (04:07)

2. The Importance of Finding Your MS “Tribe”

Support Networks: Both hosts emphasize the value of connecting with others with MS for practical tips and emotional support, but remind listeners to be wary of negative or dogmatic groups (06:42, 19:35).
- Quote: “You can find your tribe… people that have like-minded emotions and feelings… those become super close to you…” – Kathy (11:49)
Real-World Example: Adam and Kathy became friends after connecting via social media and discovering they lived near each other (11:26).

3. Will MS Change My Friendships?

Evolving Relationships: Kathy discusses how chronic illness can cause social shifts—sometimes for the better, sometimes not (09:30).
- Quote: “We’re going to change, right? Our bodies are going to change, we’re going to change mentally… Some of it’s us shutting people out for many different reasons.” – Kathy (09:30)
The Value of Peer Support: Finding people who genuinely “get it” helps compensate for misunderstandings from old friends or family (11:49 – 13:39).

4. Stigma Around Mobility Aids (Handicap Stickers, Wheelchairs, etc.)

Emotional Hurdle: Both hosts candidly share their initial embarrassment and self-consciousness around using disability permits and mobility aids, especially as younger adults (13:39 – 17:36).
- Quote: “I was embarrassed about it because I didn’t want to use it… being a guy that looks like I’m not disabled, but going into a store and having to use like the little cart at the grocery store…” – Adam (14:08)
Reframing Mobility Aids: Over time, using these tools is seen as empowering and simply “another tool” to preserve independence and enjoy life events (15:00–15:12).

5. Family, Food, and Navigating Social Events

Peer Pressure: Kathy details how dietary needs can trigger awkward or judgmental reactions at family gatherings, and encourages listeners to focus on their own needs and boundaries (21:02 – 23:44).
- Quote: “I still struggle with that where I’m going to an event and I know food is going to be prepared… If I want a salad instead, I’ll constantly get asked, ‘Do you just want a slice?’” – Kathy (21:38)
Adam’s Take: “It goes back to the not caring what other people think… because we’re doing it for ourselves, for our body…” (23:10)

6. The “But You Look Fine” Myth

Invisible Illness: Both Adam and Kathy address the frustration of being told they “don’t look sick,” emphasizing that symptoms aren’t always visible (24:03 – 24:49).
- Quote: “For the most part, it’s an invisible illness. Mine is more visible than yours is… but if I’m not walking, then you can’t tell…” – Adam (24:21)

7. Telling Others About Your Diagnosis (Work, Family, etc.)

Disclosure Choices: The hosts reflect on how, when, and to whom to reveal their diagnosis, and the workplace considerations and anxieties involved (27:03 – 32:30).
- Quote: “It is tough… it’s hard to admit that you were not who you used to be or not as good as you once were.” – Adam (31:29)

8. Support Groups & Mental Health

Therapy Recommendation: Adam strongly advises seeing a therapist after diagnosis, not just leaning on physical fitness (33:44 – 34:41).
- Quote: “Don’t be afraid to go to a therapist… I think the doctors… that’s one of the first things they should do…” – Adam (33:44)

9. Common Myths Debunked

MS is a “Death Sentence”: Both hosts stress that MS isn’t itself fatal, and clarify confusion around complications versus direct causes (37:19 – 38:06).
- Quote: “MS is not actually going to kill us... it might be complications, but MS is not going to kill us.” – Adam (37:21)
Parenthood and MS: Contrary to outdated medical advice, women with MS can safely have children; heredity risk is low (38:23 – 39:29).
Who Gets MS?: Myth that MS only affects older white women is debunked; MS does not discriminate by age, gender, or ethnicity (40:05 – 40:20).

10. Independence vs. Asking for Help

Isolation & Shame: Kathy admits to struggling with asking for help, especially after her divorce, and notes that pride, stigma, and independence culture make it hard for many (41:44 – 46:41).
- Quote: “Try not to think of yourself as a burden… this shit just happened to us, we didn’t ask for it… but we also need help.” – Adam (43:04)

11. Living Independently: Practical Tips

Accessible Services: Kathy recommends using delivery services like CVS and Walgreens for medications as a practical way to remain independent (50:33).

Notable Quotes & Memorable Moments

On peer support:
“You’ll find most likely a person or two or three that you really do click with... That means so much.” — Kathy (11:49)
On MS being visible:
“For the most part, it’s an invisible illness... But if I’m not walking, then you can’t tell.” — Adam (24:21)
On grief and adaptation:
“It’s not a one and done grieving... every time something changes, you're gonna grieve that and it's okay.” — Kathy (49:43)
On persistent myths:
“MS is not a death sentence. More of a life sentence.” — Adam (37:52)
On tough love:
“People are assholes and people don’t understand, so they lash out… But you get over it. It's just another tool.” — Adam (16:43–15:12)

Segment Timestamps for Easy Reference

Don’t Google Everything: 01:54 – 06:42
Support Groups—Finding Your Tribe: 06:42 – 13:39
Mobility Aids & Stigma: 13:39 – 18:17
Food & Social Gatherings: 21:02 – 23:44
Invisible Illness & “You Look Fine”: 24:03 – 24:49
Talking about MS at Work/Friends: 27:03 – 32:30
Therapy & Mental Health: 33:44 – 34:41
Myths (Death Sentence, Parenthood, Demographics): 37:19 – 40:20
Asking for Help vs. Independence: 41:44 – 46:41
Practical Tips (Pharmacy Delivery): 50:33

Groups, Resources, and Calls to Action

Monthly Newbie Support Group: Second Thursday of each month at 8:00 PM ET (52:30)
Women’s MS/Chronic Illness Group: Third Tuesday monthly at 7:00 PM ET (53:09)
Men’s Group (Modified by MS): Mondays, 6:00 PM ET (53:50)

Tone and Style

Kathy and Adam keep the conversation upbeat, honest, and humorous, balancing serious advice with relatable anecdotes and candid confessions. They foster hope without sugarcoating lived MS realities.

Summary Takeaway

This episode is a rich, real-world guide for anyone living with MS or supporting someone who is—packed with myth-busting, validation, peer wisdom, and practical advice for navigating diagnosis, self-advocacy, and adaptation. Whether you’re newly diagnosed or a seasoned “MS Warrior,” Kathy and Adam’s banter, encouragement, and tips will help you feel less isolated, more informed, and more empowered.

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Transcript

A (0:00)

Foreign.

B (0:04)

Your host, Kathy Chester. And welcome to the Move it or Lose it podcast, a podcast about all things that move the mind, body and soul. The Move it or Lose it podcast is for information, awareness, and inspirational purposes only. I am not a doctor and I don't even Play 1 on TV, so please consult your doctor before making any medical decisions. The views expressed by advertisers, guests, or contributors are their opinions and not necessarily the views of the Move it or Lose it podcast. Hello, it's Kathy Chester with Move it or Lose it, and this is going to be a surprise. Once a month, Adam and I are going to do a podcast together. So it's Kathy with Move it or.

A (0:49)

Lose it and Adam, ms, not ms, Disrupted.

B (0:54)

I was like, you are.

A (0:55)

And that's the wrong mfer.

B (0:58)

That's right. So we have fun together and we're a little crazy, but we thought we'd been doing some support group stuff and we thought once a month we'll just join up together and we will do this podcast together. So in with our newly diagnosed or newbies and stuff like that, we thought we'd do something a little different today. And we go over questions that a lot of you have, and since Adam is really crusty and he's had it for so long, he would be the best person to answer. Now. We're going to go over some and answers that we know just from having it for a while and being with our doctors and things like that, and just some of the things that we can answer and also some of the myths that come with having a chronic disease, not just ms, but other chronic diseases as well. So that's what we're doing today. You want to do yours first? Do you want me to do one?

A (1:51)

Go ahead. We'll just go back and forth, whatever.

B (1:54)

Sounds good. All right, so here's one of the questions we get asked a lot, especially with the newly diagnosed. We've all done it. So why do we say, don't go right to Google? You'll hear a lot of us say that immediately. Don't go to Google. And it's not because we've not done it. We've all done it. It's just, why not? It's right there. It's right at our fingertips. But it's the mixed messages. It's the everybody's got an opinion. There's so much stuff on there. It's awesome that we've got the Internet, everybody, what we do without it, we don't. We can't even. Can you remember not having Internet I don't. It's been so long now. But with that becomes a lot of mixed messages. And that's the scariest thing, is that when you're dealing with a chronic illness, I think that you want to make sure you're going to places that are giving you correct information. And it's scary enough finding out you've got something, but then to find out things that are completely misleading is even more terrifying. So when you hear people say, don't go to Google, that's really what we're saying is don't. On top of this diagnosis, don't go somewhere you're going to get misled. And the other is, you know, fake news. We all know that now. You don't want to hear. You don't want to hear fake news. You don't want to hear, oh, by the way, you may have five years to live, which is completely false, but you're going to read like crazy things like that. And so those are kind of things that, that you'll see. And you'll see things like blogs, which are different, which is a person's opinion. And I've read blogs that are amazing, but I've also read blogs that I'm like, who is this person and where they come from? And what does that mean? So it's those kind of things that a lot of people will come in. And we've seen it in our newly diagnosed group and in my women's. I'm sure you see it in the men's where you're like, where on earth did that come from? And please don't ever speak again about this disease or any other. So what would you say to that? What are some of the questions, some of the crazy questions that we get asked that you're just like, I'm going.

B (28:25)

Right. Educate that well to that. I have a client that is. Hopefully, he won't listen to this is close to 60. And it makes me so angry because he's right here and he is divorced. And if he needs something, I'll help him. And I can't tell you how many times he will say, oh, no, I just. He doesn't. Why he hardly walks. He walks with. Just really struggles. And I'll say, oh, I have a torn meniscus. And I'll be right there as somebody's talking to me about what I do for a living. And I'm a coach with Ms. And I help people. And so they're no, obviously see that he has a mess and he's lying to them. And I'm like, I can't do this. Like when, you know, you pretend like you don't have this. And so. But that's his decision. You know, it's everybody's decision when they're going to come out with that. And so I do. I. It is curious to me if it's. If it's easier because it's. It's faster, you don't really have an option. So it's kind of like you're kind of hit with it fast. And it's like I don't get time to, like, figure it out if I want to tell people where I had time. I. And I ended up having to tell like, my boss. You know, we always talk about that. Like, when do you have to tell your boss? Sometimes, never. And that's still a scary thing. But when I was, you know, in a studio and I was managing the lights, I didn't know I had epilepsy at. But the lights, it was, you know, the black lighting and it was, see, I can do all this. Then I could do like the. You had, like. It was like a hallway and you walked one trainer walked one way, one the other way. In the middle of it, you had treadmills and people on benches with legs flying. And so it's not like I. I mean, I'm tiny, but I'm tall. And so I could do all of that. And cognitively I never lost and I still haven't my ability to understand teaching. And I think it's just because I do it every day. But I didn't want anyone to know. But what would happen and why I ended up having to tell is that I would work so hard and so many hours as a single mom that I would get three hours of sleep at night and then my body would just crash and I would miss. All of a sudden they'd be calling me. I wouldn't hear the phone and I just miss my class. Or I would get really sick and I'd be in the hospital. And so eventually I had to sit down with the owner and say, this is what's wrong with me. A lot of people then didn't understand what the world was, but I think you'll know when it's time that you gotta say something. I didn't have to quit, but I needed them to understand. And that was really embarrassing for me to say I think I need a backup. And I didn't want to say that because for me, I wanted to be the very best at everything I did.