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

Summary

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

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

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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.

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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).

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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)

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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

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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)

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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.

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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.

Transcript

[A]

Foreign.

[B]

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]

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

[B]

I was like, you are.

[A]

And that's the wrong mfer.

[B]

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]

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

[B]

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.

[A]

To go on to like the whole Internet thing, the Google thing, yes, it's great that we have it, but you can find whatever you want to find on there. So whatever you're focusing on, that's what you're going to click on. And then you can go down a bad path and get caught in that path where, like you said, it's like, oh, it's a death sentence. That's another one. You're going to be in a wheelchair, you're going to be this. It's going to affect you only physically.

[B]

Right?

[A]

You can find any of that because like you said, it's what somebody has said before. You just gotta wade through it and, you know, understand where it's coming from. I actually did not Go down that I didn't. The rabbit hole. I didn't. I was completely ignorant, too. I didn't know anything about ms, but I chose not to do that. Like, I researched some stuff, but I made sure to do it on like, you know, through university websites, stuff like that. That's more accredited and not just a dude on Reddit saying, my aunt, my aunt has Ms. And she's in a wheelchair and she died from it right now.

[B]

Do you think that's because. Just kind of same topic. But you were diagnosed what year?

[A]

I was 19.

[B]

Okay. So I was. Well, a long time ago. So I was almost 2000. So back then we didn't really have anything. It was like snail mail, VMS magazine. And then. So it was really tempting to go on Google because you'd ask your neurologist and you'd be like, what? So it was really hard to not go on Google because it was like. I mean, remember Google was like the dial up. I mean, it was like, right?

[A]

Oh, yeah.

[B]

So it was like, well, I'll know in about 20 minutes if Google's going to answer.

[A]

So.

[B]

But it was really tough to not. Because you really didn't have those things that we've got now where. Okay, I'm going to go on, you know, with podcasts, I'm going to go on to the hospitals that I've interviewed, and I'm going to go right to this question and I'm going to get an answer that I know has been researched. And, you know, now we've got access to neuroscientists and all that kind of stuff. And so I know you and I always say that to patients, like, don't go on something that. When they don't even know anything about this disease or whatever disease it is. So that would be the big thing. Biggest question I think we both get asked is, I went on Google and I heard this, this, and this. And now I'm really afraid. So that would be one big question we get. And then what do you want? What do you want your second one to be?

[A]

I got. I'm going to kind of just tag onto that. I think the most important thing you need to do is you need to find a group of people that have Ms. That fully understand it. Sure, some of those people might give you bad advice, but you don't have to stick with them. You can find your tribe. The people that you know, you're going to be getting a lot of different stuff from people. It's all different because we're all different, right? So you don't have to take everything you know as truth, but at least there's ideas that you can use, right? And you can try to get be like, all right, though, that might work for me, that might work for me, right? But it's not. You got to watch out for the people that are telling you this is the only way. This is. This, this. That's what you have to watch out for, because it's not the only way. There's a ton of different ways you can do this.

[B]

I cannot tell you how excited I am to announce my partnership with foot Scientific. Their Elevate360 drop foot solution is amazing. It's lightweight, it has customized sizing, which is amazing. I've been in braces where they are much too big and bulky. This one has memory foam. It's comfortable. I have walked my dog, I have run with it already, I have danced in it. And it is amazing. It has stainless steel anchors which you can wear them in any shoe you want to. But to be able to have them connect to your laces so that you can lift the foot so that the drop foot isn't so bad and know that they're safe in there is so incredible. To be able to have this, to be able to have it on your ankle and then attach it to a tennis shoe, to attach it to a heel actually, or a sandal, is absolutely amazing. I cannot tell you how excited I am to be a part and partner up with Foot Scientific. They are truly here to meet our needs. So I encourage you to go onto the [e-mail] check them out and of course, use my discount code. It is Ms. Disrupted, all caps 30 and you'll get $30 off your pair. And also, don't forget 60 day guarantee. If it doesn't work for you, then you can return it. And that is why I love But Scientific. They're a company that truly cares about our needs. So don't forget, check them out. I love my partnership with them. Have a great day. Yeah, I agree. And I would say. Okay, so I'll go into. The question is, is, will I. Will I lose my friends with this disease? Right. So it kind of goes back to what you said about different groups. Will you?

[A]

Maybe.

[B]

Probably, yeah. I mean, there is a chance because you're going to change, right? Our bodies are going to change, we're going to change mentally, and some of it's going to be us shutting people out for many different reasons.

[A]

Many different reasons. Some good, right?

[B]

Exactly. We're going to do it because it's probably healthy. And some. Because maybe not a great decision. We're just. We can't deal with it. And we feel sometimes like they're not going to want to be with us. This is too big, and it's insecurity, and we shut them out and. And that's going to take time. Just like you're trying to deal with what in the world, whether it's ms, Parkinson's, whatever it is, you're trying to figure out, what is this? And I can't deal with this relationship right now because I'm trying to deal with what this is. So I think it's really. When you get that lonely and you're not able to be with people, that's when the question comes in, do you need a support group? And that can have a bad name. It's like a support group that means that this is for real. That means this is ongoing. But the idea that there are not just, like, in person, but virtual, you know, groups that you and I both are in is so important because these people that could be in different countries, different states, become super close to you because we're dealing with the same crap, and they may have information for us that we didn't think about or are able to really help us. I love it the most when you've got people who all of a sudden, you know, in our groups that are like, hey, wait, I know how to help you with this, or I live right near you. And then, boom, there's a friendship made, right? And those are my favorite. And I know you love that, too, when you can, like, put people, all of a sudden they're together and organically that happens, and there's a friendship. And you and I both.

[A]

Which is exactly how Cassie and I met, exactly like we. She saw what I was doing on social media, she does the podcast, she reached out to me, and I was. It was early in my diagnosis, too, and I was like, oh, cool, you know, I'll get a chance to talk to my story and tell it right? This is awesome. And then we realized we live 45 minutes away from each other. And then we just became friends and can actually hang out and see each other.

[B]

And then working out and all that, it was great to be able to support you with that because it was all new. And you were like, I'm gonna kick ass and work out. And I was like, yeah, you will. And you won't stop. And you've not. And so you find, like you said that tribe. You find those People that have like minded emotions and feelings that you do and kind of beliefs that you do. So I like that a lot. And yeah, it's, it is, it is a very. People that love you the most but don't have the things that you have will love you to death, but they still won't get it. Finding someone like a group is so important because they get what we have. Doesn't mean you're going to connect with every person in the group, but you will find most likely a person or two or three that you really do click with. And then those, whether it's you guys are, you know, on the phone together or whether you're, you know, whatever you're doing online together, you've got that person. And that means so much because, you know, Adam, I love to text you and like, and bitch to you about my life and what's happening and my, oh my gosh, you won't believe this and this is happening, but sometimes you need to because the frustration is there and we're all different. You know, for my, my thing that caught me in the beginning was cognitive. And it's like, you know, I can walk, I can run, I can do all this stuff cognitively. I'm like, did my brain just leave? And I didn't know And I'm the opposite. Right.

[A]

Mine's mostly physical. I have some of the cognitive issues, but my memory sucks. Short term memory sucks, but it's mostly physical for me.

[B]

Yeah. So it's a tough one. And then. Okay, here's my next question. How tough is it for our newly diagnosed or for someone like me who's had it forever? But I get still, and I've talked about this a lot and people get embarrassed to get that handicap sticker for you. It was a no brainer. Obviously you need it. Right?

[A]

And I was, And I was embarrassed about it too when I first met.

[B]

Because how old were you?

[A]

I was only 37. And I was embarrassed about it because I didn't want to use it. I didn't want to have to be 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. Like, I had to get over a lot of that early on because I was so young and I still looked so healthy, minus not being able to walk. Like, you know, it's a weird misconception, but you get over it. And like, I finally realized that, you know, I spent a long time getting out of the wheelchair and I don't like using My wheelchair. But I've gotten to the point now where I do use my wheelchair.

[B]

Yeah.

[A]

I'm not upset about my. I'm not upset at myself for it because.

[B]

Right.

[A]

I know that if I'm not using that wheelchair, I can't do what I'm trying to do.

[B]

Exactly.

[A]

It's just become another tool for me. Do I like to use it? No. But I will, because that means I went to this concert or that means I went to the sporting event, or that means I would, you know, it's just another tool that I can use.

[B]

Yeah. And that's.

[A]

Takes a while to get there. It really does.

[B]

And that's a big question. I think what I'm getting is that when you're newly diagnosed, that's this cough. Oh, my gosh. That's a big thing, is you see yourself immediately in a wheelchair. Now, I've always been afraid of that, but I'm not there now. Now I'm more afraid of my mind just being gone. But, you know, there's. There's so many things that can happen with each of these crazy autoimmune things. And it takes so long to accept something. And for me, the idea of having the handicap sticker was people are going to look at me and they're going to think I'm faking it. But there are times when my legs are just lead and I can go into a store and do something. And the idea of walking to my car sounds like I'll just sit here. I just don't want to get. I can't get there. And, you know, going there took a long, long time. I mean, my kids were grown before I would use that sticker because I just felt like. I felt humiliated. I felt like if someone was coming in a wheelchair, like, they're looking at me like, what is she doing? So it takes a long time, I think, to get past that and just know I need to use this. And I'm not going to look at anybody. I'm not going to care what they think. I think that takes longer.

[A]

That's the biggest thing is that's where you have to get mentally, is.

[B]

Yeah.

[A]

I don't care what other people think or say because people just say stupid stuff.

[B]

Right.

[A]

People are assholes and people don't understand, so they lash out. Like, I. Yeah, when I pull up into a handicap spot, I have my heavy metal music blaring, you know, my sunglasses on, I'm fully tatted up. You know, I pull into this high handicap parking spot, I get the funniest looks of everybody.

[B]

Right.

[A]

But then I get out and I have my walking sticks and I can barely walk and it's like you can see the looks on people's faces that they wanted to say something to me. People have.

[B]

Yeah.

[A]

But it's like they. Then it's like, okay, well, people suck. That's really what it is.

[B]

Yeah. I mean, I got now in my yoga pants after training and they're looking at me like, really? And I. It's so hard because I want to say something and I want to say, wait, wait. And I've learned to say nothing and just.

[A]

Yeah, you just go about your business because it's not their business. It's that if they like actually approach you and say something to you, then yes, of course, say something, but, you know, don't. And I think a lot of it is more in our heads than what it's actual reality.

[B]

Oh, for sure.

[A]

You know, because we think that this person's looking at us. We think they're gonna say, you know. Yeah, it probably isn't. Most people are. Most people are decent.

[B]

Yeah.

[A]

And they'll understand. And I have noticed that when I am in my wheelchair or I do have my walking sticks, like, people genuinely are usually nice and we'll open doors and we'll get out of the way and we'll do this and that. I mean, obviously you're going to have assholes, but it's a low.

[B]

People are nicer to me if I have Sophia. Yeah, I mean, they are. They're always like, oh, and they're nicer to me. But it is, it is a tough thing to get over, you know, I mean, when I was diagnosed, they gave you. Now don't laugh. VHS tape. Vhs, your handicap and all the Norco you want. I was like, thanks. So that was like, you know, your. That was getting Ms. And that was like how it was done or whatever. My RA was different and, and epilepsy was different. So I think it's just, it's. It's just a crazy thing. And again, going back to the Google or whatever, even in the support groups, you have to be careful and do your research. And sometimes even in the, even in the Google or even in a different group, which is why it's so important to pick a group that fits for you, is you might get into a group where there are just negative people. We've both been in there a lot of doom and gloom, right. It's like DMT suck. All neurologists suck. And that's not true. There are DMTs that do great for our bodies, and they're.

[A]

And it's all different. It's all just exactly related to your body. Your body may not like some of them.

[B]

Right. Didn't work for me. Well, Ocrevus works great for you. It sucks for me, and I wish it didn't, but it did. And I think that that's a tough one. A neurologist that was great for you. Wasn't for me. And so it's like. But it. Does it mean that every neurologist sucks? No, no. It doesn't mean that some neurologists don't work with you for sure, but it doesn't mean that you're done. It means that you've got to find one that works with you. And so I think that when you're in a group and they're just like, blasting negativity, get out, get out, get out. Way too many. And research. I mean, I know that we found in our new one and in my women's one where they're like, I didn't know where to find you. And so we've been really pushing, promoting, promoting, promoting it because they've not been able to find it. But I think that when you hear that, that's like a red flag immediately. All of this when it's. When it's this. This is 100%. Neurologists all suck. DMTs all suck. Get out. I think that's a big one. Or the neg. I mean, here's a question that I get asked. Should I just not go to family events because I need to eat differently? What do you say when they ask us that?

[A]

It's ridiculous.

[B]

I mean, that happens. I mean, I know, right? Or they want to serve us alcohol and we're like, that's not going to work with me.

[A]

I mean, we eat what we eat, and it's not going to stop us from doing things it shouldn't. You know, if we go to an event, we're not going there to eat whatever they're doing. We're going to hang out with people we cannot eat. We can bring our own food. We can bring. You know, I have no problem doing that stuff. Like, I'll go out and hang out with my friends at the bar. I don't drink. Also go hang out, whatever.

[B]

And what if I want a glass of wine?

[A]

So be it right now.

[B]

Sometimes I'll get judged for that, but a lot of times I'll go and I'll say, I really can't. I can't today. I Don't feel like it's. It's going to be good for my body. And that's again, on us. We have to have that thicker skin, and that takes a while for us to get that where we can say, you know, I'm not. I'm going to be here. And, gosh, I. I still struggle with that where I'm going to an event and I know food is going to be prepared, but it's going to be for me. I can't do pizza. That's one that makes me really sick. But other people can. And if I want a salad instead, I'll constantly get asked, do you just want slice? And I'm like, no, thank you. And it's. They'll get. I'll get things like this said to me, you just don't want to lose your figure. Nope, that's not. If you want. That's not why I eat whatever I like. So I work out enough that I can eat what I want. So it's not that. But you've got to figure out how you want to word it, how you want to say it, because probably we don't want to stay away from every family event. Some. But, you know, it's. You don't want to be alone all the time that causes big depression. So I know that's a question that we get. I get asked a lot is, what do you do when it's a family event and everybody's staring at you and mad because you're not eating their. Their family, you know, tradition.

[A]

And I think, again, just goes back to the not caring what other people think or whatever.

[B]

Exactly.

[A]

Because we're doing. That's a big one for ourselves, for our body, not for, like, vain purposes, like keeping your figure. It's because I know if I eat that giant piece of cheesecake, I'm gonna pay for it for days.

[B]

For sure.

[A]

I'm just not gonna eat it.

[B]

Exactly. I mean, I can see it try.

[A]

To push that a lot. And they're like, hey, just try it. Just have some sweets. Like, I will every now and again. But, yeah, it's just I don't do well with sugar, so I stay away.

[B]

From it for sure. And we know at this point what works for us, what doesn't. Like, I know I can get away with this. That. No. So, I mean, you'll. You'll figure that out, but give your body time. So that's. That's one I had too. What. What's the question you got?

[A]

It's not more questions. It's I'm more of the. It's the. The. Not the myth, but the stuff that people say that are ridiculous. And the one that gets me the most is like the whole, you look fine, so you must not be sick.

[B]

Yeah, I get that. Well, yeah, I get that often because the misconceptions of.

[A]

It's an invisible. For the most part, it's an invisible illness. You know, mine is more visible than yours is.

[B]

Right.

[A]

But if I'm not walking, then you can't tell, right? And I look like I'm in shape and I look like I'm healthy and I am all those things, but I also still have ms, and it's still a debilitating illness for me.

[B]

Right?

[A]

And so it's stuff like that. It's just. You gotta just let it go in one ear and then right out the other.

[B]

And then. Honestly, Adam, sometimes I feel like, you know when people say that, but you don't look sick. I'm like, do I wanna look sick? Like, I don't know that I really wanna look super sick. But I also just need you to understand I've got these three autoimmune diseases and I just need you to be. And going back now, I know you're gonna have to spider web with me. It's a woman thing. We spider web. We get to the point, but we go all the way around. If there's one thing I would say to moms and dads, I hit it. But back then, that's what we did. We hid it because it was terrifying. We didn't know if our kids would be taken away. I'm dead serious. They threatened and we'd be fired. So I hid. I hid this like you would not find it. And I didn't tell my kids when it was getting bad. I didn't tell them anything. In all honesty, when, like, Ty Sabri came out and stuff, they truly thought we were going to be fine. Like, that was the magic drug. And so I. I went hog wild with it. I was like, kids, mom is great. We don't even have to worry about Ms. Again. And even back then, cognitively, they believed we would never. Whatever we had cognitively wrong, it was never going to get worse. Well, hello. Well, I'm here to tell you it will get worse. So that's what my kids knew. Now looking at them, they're like, I don't know what happened, but you messed up because you are way worse. So it didn't give them. We didn't know. But I think hiding it, which we can Do. A lot is so wrong for us, but it really confuses the people that we live with or friends. I think as we have it longer and we are more confident with it, it's okay to say that. I don't know what it's going to do. It could do this.

[A]

That's like, another difference between us. Like, I didn't have a choice. I couldn't hide it. There was no hiding it for me.

[B]

Nope, you had to be right out.

[A]

There, because it was right out there instantly. And it was, you know, being healthy and then six months later being in a wheelchair. Like, do you have a choice?

[B]

Looking back now, do you think that. And then I want you. I'm on. To hear back about this, too, from others. Whenever we do a podcast, we get a lot of feedback. Either they don't like you. Most people, they like me. Do you think that that was easier for you to be quicker about being specific about things that were driving you crazy? Because it was so out there fast where I could hide mine for so long?

[A]

I think I. I mean, I don't really have anything to compare it to. It just. It was what it was.

[B]

Don't be difficult, Adam. Just to answer the question.

[A]

It was. It was there, and it was different. And I'm not gonna just sit and, you know, lie to somebody if they ask me what's wrong with me, that was like, one of those things, like, sure. Most people thought, like, when they would see me, they thought it was like a sports accident.

[B]

Right, right.

[A]

You know, stuff like that. Because that's. And I just. I'm not the type that's just gonna lie to somebody, so. But I just told them, said, no, it's Ms. And, yeah, as I got doing that more and got more into the advocacy stuff, that's what I realized is talking about. It just. It enlightens others, it teaches others. It gives you that time that you can actually explain it and maybe make someone learn something that they didn't know already.

[B]

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.

[A]

Yeah.

[B]

And it is.

[A]

It's hard to admit that you were not who you used to do or.

[B]

Not as good as you once were.

[A]

Right.

[B]

It is tough. So you were at ups. How did you tell them?

[A]

I mean, I. As soon as I started getting this stuff and, you know, started realizing that my legs are being weird, like, I just flat out told them, I said, I don't know what's wrong with me, but there is something wrong with me.

[B]

Yeah.

[A]

And I need to figure out what this is.

[B]

Yeah.

[A]

Like, originally they thought it was like a hernia. And so that's what I told them first. And I was like, I can't go on road anymore. I can still work. I'll still be in the office. I'll go to physical therapy. And so that's what I told them. They thought I was making it up, but that's a whole different story.

[B]

Yeah.

[A]

But then, like, once I got the diagnosis, I. I mean, they're first people I told because I. To me, it was like, okay is in my head. But I, you know, I wasn't making this up. There was something wrong with me.

[B]

Right.

[A]

Like, I just told them right away.

[B]

Yeah.

[A]

They didn't do anything for me, but, you know.

[B]

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[A]

The other big thing is, as much as Kathy and I both preach the physical side of it, don't be afraid to go to a therapist. Don't be afraid to talk to somebody. Like, I think the doctors, when you get diagnosed, I think that's one of the first things they should do is be like, here, you need to go see a Therapist talk to somebody about it because they only just say, oh, yeah, this is. That. You have Ms. See you later.

[B]

Yeah, it's.

[A]

To us, it's life changing.

[B]

Absolutely.

[A]

So don't be afraid. Especially with guys. Guys are a lot less likely to go to therapy and talk and.

[B]

Yeah.

[A]

You know, express their feelings. I did it. I did a couple bouts of it and it helped me.

[B]

Yeah.

[A]

Oh, my God. I don't do it anymore because I don't feel like I need it anymore because I think I've got my. I've got. Well, maybe not for the ms, just in general.

[B]

Yeah.

[A]

But I think my mind's all right or I've come to terms with it. I understand what it is. I know what it does, and I know what I can do and what I can't do. And I just keep trying to do as much as I can.

[B]

Well, changed a lot since we first met. I mean, you really, you. You give out so much. You're able to give out. So, I mean, I wouldn't be doing this with you. You are able to do so much advocating not just for yourself, but for others. You do a lot of things that help others now, which I think is super cool to watch how you've grown. I mean, I don't know how, because I've not aged. But you have. And I just think it's amazing to watch as you've aged, how you've been able to help so many. And I think it's super cool.

[A]

The reason that I do it, the reason it all started when me getting into advocacy stuff, is because that first year, I didn't have anyone. I didn't have anything. I was completely alone. I didn't have any groups. I didn't have any people that I could talk to that fully understood it. Sure. I had, like, my family, and they were great.

[B]

And they are the most amazing family.

[A]

They are. They are. But they don't fully get it right.

[B]

And none of ours do.

[A]

And they understand me of how I used to be. Like, I'm not a complainer. I don't go to the doctor. I just. I just. I plow through things, you know, it maybe not have been the best sometimes, you know, when I go around with a broken arm for weeks. But, you know, that's how I.

[B]

Well, that's you. And I do that.

[A]

So when I. When I told them that something was wrong, they didn't question it because they know that's not how I am. So they. They accepted it. They were the. They are still amazing. And they Were there for me.

[B]

Yeah, for sure.

[A]

And that's what I needed. But I didn't have the stuff I have now, the group, the Ms. People that fully know you. So that's why I did it, because I didn't have that. And I think if I would have had that early on, it would have made that first year a lot better, because that first year was awful.

[B]

I think for everybody, it is. Because you don't know what the heck this is. And even. Okay, I had my grandfather. We didn't know. I know now he had it. My aunt had it in Canada, but I didn't know that she had it. You know, I didn't see her as. She was my favorite. One of my favorite relatives. But I didn't understand. I was living in Tulsa, and I didn't. I didn't know it was getting worse and worse until I saw her right before. Not long before she passed. And now when I say pass wasn't from ms, it was. She was a smoker. And so she ended up passing from lung cancer.

[A]

And that's another common misconception that I think.

[B]

Yeah. So there's our myth. Myth number one.

[A]

Ms. Is going to kill you. It's not right. We're all gonna die. We're all gonna die of something. It's not gonna be Ms. It might be complications from that. I said this or that, but Ms. Is not actually going to kill us right now.

[B]

If you're on a DMT that leaves you open and you're smoking like a fiend. You're smoking pot, you're smoking cigarettes, you're drinking. Like, do you leave yourself more open for things? Absolutely.

[A]

You sure do.

[B]

So.

[A]

But that's all just. That's all choices. And, like, the Ms. Is not going to do it. It's going to be there forever.

[B]

Yeah.

[A]

It's like when I remember thinking about it early on when. Because I heard that, too, because people were like, it's a death sentence. And, yeah, I was like, it's not a death sentence. More of a life sentence. That was when I was a little more negative.

[B]

Yeah.

[A]

It was like, it's a. It's a life sentence. Like, I'm gonna have this forever.

[B]

Yeah. You know, and now I remember back in the day, they would come to terms with that. They would say, your mom will. Probably not, but my. My mom. My aunt died from it, and my kids were little. I'd be like, what the hell? You don't ever tell them that, right?

[A]

No.

[B]

It make me furious. But that was definitely a myth. Another Myth was back in the day, I understood was. And I had three healthy kids, but my doctor was very adamant that I don't have any children. And I think for a long time, women were told no kids. Now we know. Absolutely, you can safely. And. And I love that. There's nothing I love more than to see an Ms. Photo of. Of moms having kids and mom and dad there with their babies, and you can. And I think that that was a myth that women look at now. And they were diagnosed back when I was. And they didn't have even. Even one. And it's like, I could have done this, but, you know, back then, it was like they didn't know anything. So.

[A]

Yeah, they didn't, because they think you can pass it on. And, I mean, you can. There's like a very. It's a very low.

[B]

I mean, my son has it.

[A]

It's a very low percentage, though, which is insane. 3% from what I looked lower than that. Is it.

[B]

Okay, we'll know. A mom passing it to her is the lowest.

[A]

Okay.

[B]

And my son has it. I'm like.

[A]

And it just. It just happens, though. Like, for me, there is nobody in my family ever that's had it. And my mom kept track of all that stuff really well with all the family. I mean, so what happened to me, you know, right then, because it wasn't hereditary.

[B]

It just seems to be moving around like little popcorn kernels.

[A]

It's just. Who knows? That's the thing about ms, is it. It does not discriminate at all.

[B]

It does whatever the hell it wants.

[A]

It does to whoever.

[B]

So you can't live, like, okay, it's going to do because you cannot predict it.

[A]

Yeah. And that's the other. That's the other myth, too, is like, it only affects older women.

[B]

Right. White people.

[A]

Older white.

[B]

That makes me mad. That makes me furious.

[A]

It only affects older white women.

[B]

Yeah. And I've done podcasts.

[A]

I was a younger white male when I got diagnosed. It happens to anybody.

[B]

Yes. Yeah. I remember having Tyler Campbell on, and he was talking about going into an Ms. Center, and this white older woman said, what are you doing here? And I was like, sorry for every old white woman. But it's. It's just humiliating how dumb people are and the ignorance in there. But. But yeah, leaving. I like the myth part. See, I have another one that. Oh, this is one you don't need to get. Like, there's. I guess it's a question. And one living alone can be. You don't feel like, how do you get support and you want to live alone. But when you live alone, it's kind of like, I need to be independent. And it's okay to ask for help. We're all going to need help. And, you know, you've got your parents. You're there because when everything happened, it was bonkers. What else are you going to do? I don't have parents and I have been alone. And it's that scary thing of who would I ask and who. Who can I ask for help? And so it's that scary feeling. Or if you. If you've asked someone and they don't, you kind of retract back and say, okay, I'm never asking for help.

[A]

Yes.

[B]

So it's like you can ask. Like, I would ask you if I was crying and saying, adam, can you help me find people that can. That can help me? Because I was rejected and I feel too embarrassed now to ask. So I know that you would sit with me. We go through whether it was can do Ms. Or something, people that would help me to, you know, figure some things out. And because it is a scary feeling when you're all alone and you're like, crap there. I could, like, have a seizure today. And I don't know who would help me. So there's things that you can ask people for help. And I think that that's a big myth, that I'm on my own, I'm independent. I'm not going to bother people. And that's, I think, a feeling that we have is that it's a big bother and you don't want to do that when on all actuality, there's people that have wanted to help but haven't known that you are just kind of waiting for you to ask. So try it. And don't. Don't be mad at yourself if you asked the wrong person. You know, there's people in my life that I know that love me, but they're not the right person to ask for help.

[A]

And that's.

[B]

You know, I know the hard thing.

[A]

Is, like, personally not try not to think of yourself as a burden.

[B]

Yeah.

[A]

And that's a hard thing to do because I still think about that at times, you know? Yeah, I still do. And that's. I mean, this. This shit just happened to us. We didn't ask for it.

[B]

Right.

[A]

We're trying to do the best we can. We try to be as independent as we possibly can, like you've said. But we also need help.

[B]

Yeah.

[A]

Better at actually asking and accepting it and also accepting.

[B]

Right. So going to that, like, we know what I've gone through. So I'm going through, almost finished with the divorce. So that's been horrific. And you've been a great support to me through this. And so there's gonna be a part where I back away because I'm like, well, my husband didn't love me enough. He. He thought it was too hard. He just took off. So the idea of going to someone to ask for anything, I'm like, not even the person that was supposed to love me through sickness and health thought I was worthy. So who the hell else is gonna want to help me? So I think that there's a lot of that where they've been left. Men and women who've been left because they said, I've had Ms. Or I have whatever, a chronic illness. And that person had been like, okay, too much, goodbye. And so the idea of asking for something is terrifying. So I don't think that there's anything that I could say to them that could make them run out and ask for help right now. I think it's something that they really have to. Again, my therapist has probably been the best person. And if you are another red flag. If you are at your neurologist and you ask for a cognitive therapist and they look at you like, not sure. Leave, run. Because if they have to look at it up, then they do. Are not your right. Not a neurologist. You want you. They should know cognitive therapists there. They should know them so well because their patients go to them.

[A]

They should push cognitive therapy. Physical therapy.

[B]

Yes, they should do both.

[A]

Whether you think you need it or not, you need it.

[B]

And the after. Because that's what we're pushing through.

[A]

Why wait till you're bad to try to fix it?

[B]

Yes.

[A]

Do it all the time.

[B]

The big thing we're pushing through Washington is like, okay, physical therapy. And then they leave you. Okay, good luck. That's where I'm supposed to come in and help. And it's like, do I get paid for that? No. Did we think years ago I would? Yes. But it's like, hello, hello. And Ms. Society. You still need to do the other part after physical therapy. We know it's our biggest defense. So there's a lot of that. There's a lot of. A lot of, like, help that we need going back to that. You know, our culture places a huge value on living independently. And we get to that point especially I think as women now, we fought so hard for that independence and people seeing us as equal. That the Idea of going in and I need help is really tough for us. And I think it is obviously still extremely hard for men to do that, but it is really tough in a culture that really, really puts such a high value on. I got this. I don't need anybody. So it is. I think that's. That's one of the keys that make it so difficult for us to get to a point where we are dependent. It's embarrassing.

[A]

It's your own pride is what it is. And I fell into that. I still do sometimes, you know.

[B]

Yeah. Did your mom have good scriptures for that?

[A]

Oh, yeah, Those worked really well. But being as, like, independent as I was my whole life, it was really hard to have that all stripped away from me.

[B]

Yeah.

[A]

You know, to lose the ability to drive, lose the ability to walk, like, what the.

[B]

Yeah.

[A]

What the fuck? That's how I was. I didn't.

[B]

And that's such a good thing, too, because that's not forever. I mean, look at you now. You're driving. It's not normal driving. I'm afraid to drive with you. No, I'm just kidding. No, I mean, hey, I can't. See you can't use your legs, but, hey, we do.

[A]

I'd rather drive with me than you, that's for sure.

[B]

Anyway. But you're riding a bike way better than last. Last year or year before.

[A]

I'm walking. I'm walking without my sticks a lot more than I ever have with my psionic legs.

[B]

Yes. I love that.

[A]

Which are.

[B]

Sexy.

[A]

There they are.

[B]

I love them. I like them very much. I just rode and covering your tattoos.

[A]

I know, I know. That's unfortunate.

[B]

Yeah.

[A]

Which is. You're going to find this amusing. So I rode today. When I talked to you, I called you while I was riding and I.

[B]

Was like, why are you calling me while you're riding?

[A]

Guess how much. Guess how much I rode today. Take a while.

[B]

How much? 10.

[A]

6.66.

[B]

Nice. I like that. I went right. That's awesome.

[A]

6.66.

[B]

It's encouraging because it immediately. Don't tell your mother that. Right. When you said that to me, I was like, I am not missing my workout. So I take all my weights and my stuff and I put them in the living room. So I can either keep them there or because I'm gonna have to move them later in the day. So that's kind of how I force myself to do it. So I think it, like hearing other people do it, it's a really good thing because it forces you to get off Your butt and. And do it. And Lord knows I tried so hard to. To get people on. I'm going to launch something soon that's going to be for everybody to do. So I'm excited about that. But I think that it is. It is just, you know, really kind of just ask yourself, like, sit down with your own self. Are you comfortable asking anyone for help? Because this could just be a you thing that you need to work through. Like you said, prideful. Are you comfortable asking anyone for help? Or are you just like, no, I'll figure it out. Or I just. I'll just.

[A]

And you need to be comfortable with yourself.

[B]

Yeah.

[A]

Because if you're not, then nothing else is going to come together. Like.

[B]

Right.

[A]

You have to be comfortable with yourself. And it's hard. That's a hard thing to do. When your body changes is fast and quickly or slow. Whatever it is, it's still changing. You're still not who you used to be.

[B]

Yeah.

[A]

You got to come to terms with that. You got to be okay with that.

[B]

Yeah, for sure. And we've had, like, in the group. I'm sure you've experienced this in the men's group is something will change. Right. Something. Something else will happen through the years. And I always say it's not a one and done grieving. It's okay that you're going to grieve again. It may be a small little loss, but every time something changes, you're gonna. You're gonna grieve that and it's okay. It's totally, like, it's totally normal to grieve that.

[A]

Because, yes, it is.

[B]

That's how our body and as we do that, grieve it. But the big thing, don't stay in that. No, don't stay in that.

[A]

Grieve it, Go through it, feel it, but move on from it.

[B]

Yeah.

[A]

Find a way around it, through it, whatever it is.

[B]

Yeah, absolutely. Um, so the other thing. Oh, this was a great thing. So let's say you're about. You're on your own. My goodness, this was great. Find pharmacies that deliver. I mean, cvs, Walgreens, those big ones, they deliver. So if you're unable to get there, find pharmacies, find health. Things that make our lives easier. I thought that was a great one. As you reflect on things is like finding support in ways that. That you can do even if you don't. You're alone, like I am right now. So I was like, dang, I don't have to get to CVS every time I Can like have a CVS get it to me. And those were like some really good things that, that you can do. Any other myths that you want to go through before we're done?

[A]

No, I think we got most of them.

[B]

Yeah.

[A]

Well, other than the whole, you know, just take Ivermectin and it'll cure you. Or go do bee sting therapy. Yeah, gosh, you know, drown yourself in a pool for seven, it'll cure you. You know, all that stuff, Dr. Igabawe is going to cure you.

[B]

You know, always you're going to get.

[A]

Told there's so much snake oil. There's so much snake oil out there.

[B]

So much. And just, you're going to have to let that go and know that uncle Fred, who's 90, has got like a great idea for you and just say thanks so much and let it go. But really what we want to cover today is just like some of the questions that we all have or had in the beginning and then some of the myths that are out there that are just kooky. And when you're newly diagnosed or going through stuff, it's like, well, maybe, maybe this is true and, and a lot of it's not. And if you're, if you're questioning something, go to a source that you know is, is true and now link to the bottom of the podcast, some of those places that are safe to go to that we can look up.

[A]

So, I mean, I don't know when this is, when you're gonna release this, but probably newbie support group meeting is always the second Thursday of the month, so that'll be next week, which is the eighth, I believe, at 8:00 Eastern. So we do three ish years diagnosed. Yeah, it's around there. We don't really care too much.

[B]

Yeah.

[A]

But it's just, it's a great, safe space for people to come ask their questions. Just lay it all out there. That's what we're here for. Kathy and I have. What are you, what are you, 20 some years in? 40, I thought 40 some. I got like six years in. We got some, we got some knowledge here.

[B]

Yeah, it's a lot of stuff that I think really helps people that are, that are new. It's, it's an awesome. So please feel free, join us and we'd love to see you at your faces. And we. Word of mouth is the best, obviously. And then you've got the men's. We have the women's group that meets every Tuesday. The third Tuesday. No. Yeah, the third Tuesday. I'm like wait, the third Tuesday of every month and we meet at 7:00pm Eastern Standard Time and that's for MS, but chronic illness across the board. So that's something we added that we're really excited about. Okay. But that's just for women. And then you've got your men's group and that meets.

[A]

We do Mondays at 6pm Eastern Time. That's through modified by Ms.

[B]

Okay.

[A]

And it's a great group. They get a lot of people on. There's usually like 30 some guys on there every week.

[B]

That's awesome. And so yeah, yours meets weekly.

[A]

Yep.

[B]

That's cool. Yeah, I've been kind of playing around with doing like a mid morning one or something like that for people that can't get on later. But we'll see how much time I have. But no, this was. So give us your feedback. So we're going to do this once a month where Adam and I do the podcast together and, and we're just going to go over different topics and go over some fun things and some.

[A]

We're going to get some people. We're going to get some people in too that we can actually interview the two of us.

[B]

Yes, we are. We're going to interview some people. So we'll come up with our next interview person. But this was our first one so let us know what you think. And we love you guys and we're really excited to do this. So for today we're gonna say goodbye. Goodbye. And we love you and we'll see you guys next time on Move it or Lose it and can't wait to hear your questions. Bye guys.

[A]

Bye everybody.

[B]

Love you. Talk to you later.

[A]

Bye.

[B]

Thank you so much for joining me for another episode of the Move it or Lose it podcast. It would mean the world to me if you subscribed and left a review. Remember, you can find me on Apple, Spotify, Stitcher and YouTube. New episodes of the Move it or Lose it podcast air every other Wednesday. If you have any suggestions for future guests or topics, please visit my [e-mail]. until next time. Next time.