Best of CMT 4 ME

In honor of CMT Awareness Month, this episode is dedicated to helping listeners navigate the vast seas of Charcot-Marie-Tooth disease. As we sail through September, dubbed #CMTAM23, we're amplifying voices that echo the experiences, challenges, and hopes of over 3 million individuals affected by CMT worldwide. In this special compilation, we weave together the best of 'CMT 4 Me' to highlight both the scientific strides and the deeply personal tales of acceptance and resilience. It's more than just individual stories; it's a collective testament to the spirit of a community striving to spread awareness. So, whether you're familiar with CMT or hearing about this commonly inherited neurological disease for the first time, join us in making waves of change. And while you're at it, consider honoring a CMT star in your life by adding their name to the CMTA's virtual Sky of Fame, a luminous tribute to those navigating the challenges of CMT.

Guests Featured:

• Dr. Zuchner
• David Tannanbaum
• Arda Ozdemir
• Camilla Stivinson
• Bev and Frank Wurzel
• Aron Taylor
• Ashley McLeroy
• Dan and John Morgan
• Yohan Bouchard
• Dr. Glenn Pfeiffer

And More!

Episode Highlights:

• The promising landscape of gene therapies and what the future holds.
• Embracing and navigating the emotional journey post-CMT diagnosis.
• The importance and strength of community in the face of CMT.
• Stories of hope, acceptance, and the lessons life with CMT teaches us.
• The tireless advocacy efforts shaping a brighter future for those with CMT.

As we reflect on the stories and insights shared, it's evident that the CMT journey is one of challenges met with determination, heartaches soothed by community, and a collective drive to push forward. Together, we're not just raising awareness; we're building a brighter, more informed future.

Want to Share Your Story? Inspired by today's conversations? If you have your own CMT story to share please complete our interest form here to be considered to be a guest on CMT 4 Me.

Stay Connected: To dive deeper into the world of CMT and stay updated on future episodes, join our email community.

Behind-the-Scenes: For those curious about the candid moments and raw conversations behind each episode, don't miss our "Raw and Unedited" series on youtube here

Tell Us How You Navigate CMT!

Within the CMT community, every individual's journey is a testament to resilience and strength. How does one navigate the ups and downs of Charcot-Marie-Tooth disease? The podcast encourages listeners to dial in at (941) 233-5172 and share their strategies, experiences, and stories of navigating CMT. These shared moments have the potential to inspire, bring comfort, and foster deeper connections. Selected stories might even find their way into upcoming episodes, offering insights and encouragement to others. It's a collective effort, weaving together the voices of many into a tapestry of support and understanding. Share your voice and be part of this narrative. #CMT4Me #ShareYourStory

CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people who have CMT (Charcot-Marie-Tooth disease), their friends, family, and the general public. CMT 4 Me provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges, and share successes. Another goal is to spread CMT awareness and unite as a community. We will also cover research updates, fundraising, unique stories, inte

For more information about CMT and to support the CMTA, please visit www.cmtausa.org

Transcript

Chris Ouellette: 0:00

It's just such an awesome community. You know, you don't find people that are sitting there looking for sympathy. And they are talking about what they have accomplished and what they can do. Some folks say, hey, if I had a chance, I don't know. It's hard, right? Some folks would be like, obviously I wouldn't want CMT. But CMT has really made me into this incredible person. And that is very heartfelt warming and touching to me to hear those stories, parents or siblings,

Elizabeth Ouellette: 0:27

our community, our family. Everybody's involved. I met hesitate.

Chris Ouellette: 0:33

I hope mom's listening because we need her to make a big donation this year. I

Elizabeth Ouellette: 0:36

know this is the reason we're mentioning her.

Chris Ouellette: 0:40

your checkbook mumsy, Mama Hello, everyone. This is Chris and Lizzo.

Elizabeth Ouellette: 0:50

We are a brother sister team.

Chris Ouellette: 0:52

And on behalf of the Charcot Marie Tooth Association, aka CMTA. We are I'm in NACHA.

Elizabeth Ouellette: 1:02

From coast to coast, I'm in California, and Chris is in Green Mountain State of Vermont.

Chris Ouellette: 1:08

That's right, folks. And yes, excuse him there mon vanamo Vermont we this is another episode of our podcasts named what lists CMT, for me CMT the number for me. That's right, folks, CMT. For me, a community focused podcast dedicated to those with CMT, given them a voice in the community to share their stories, good or bad successes, challenges and much, much more. Every

Ashley: 1:37

episode, I've wondered how y'all coordinate this beginning conversation?

Chris Ouellette: 1:43

Oh, it's pretty interesting.

Elizabeth Ouellette: 1:46

Last minute,

Chris Ouellette: 1:47

let me get my voice going here.

Elizabeth Ouellette: 1:53

Usually likes to start with the Darth Vader voice

Chris Ouellette: 1:56

sometimes, but did you have your cigarette? Elizabeth? No, here actually the cigarette comes out so should actually change smoker.

Elizabeth Ouellette: 2:08

I'm allergic to laughter It gives me asthma. And he tells me that I smoke and I don't

Chris Ouellette: 2:13

you wait to hear

Ashley: 2:18

this che use the sick all the time.

Elizabeth Ouellette: 2:22

She's heard the podcast. All right.

Chris Ouellette: 2:24

Okay, so are we ready?

Elizabeth Ouellette: 2:26

Why are you fixing your hair?

Chris Ouellette: 2:27

I'm just itching my head. Oh,

Elizabeth Ouellette: 2:31

our next guest the distinguished and most reputable Dr. Stefan Zeichner.

Chris Ouellette: 2:37

Isn't that a German name? Cool. A great opportunity to brush the dust off my German vocabulary. As you can recall from other episodes, I spoke French and even spoke with the British accent. Allo, we get this dear Stefan.

Elizabeth Ouellette: 2:53

I think that means Hi, Stefan. How are you? Yes, it

Chris Ouellette: 2:57

does. Well becomes the diner schneiden.

Elizabeth Ouellette: 3:02

Chris, I think that means it's the fun. Understood. Where do you get your haircut?

Chris Ouellette: 3:07

Oh, it does do guess me are often awful.

Elizabeth Ouellette: 3:11

Now it says, And this is true for you. You're getting on my nerves.

Chris Ouellette: 3:14

Liz. Oh, so what do you think my incredible German

Elizabeth Ouellette: 3:18

czar slashed very bad.

Chris Ouellette: 3:21

So let's move on. Well last Stefan to clarify some commonly asked questions and misinformation, a great learning opportunity for all of us.

Dr. Zuchner: 3:31

It is really the night 10 years ago pharma and the research community. There was little in the so called pipeline therapeutic pipeline that has truly changed. There are now gene therapies for some rare forms of CMT. They're related disorders like spinal muscular atrophy. It's for doctors, even though it's different from patients. It's related to disease. There are functioning gene therapies. Industry has many projects now that they want to bring forward. Academia has many more ideas. It feels a bit like a domino game where you know, it flips faster and faster. I think we had the beginnings of the age of therapy. You know, we were in the age of diagnostic finding the root causes. We see signs that we are entering an age of therapy.

Elizabeth Ouellette: 4:27

Yeah, I love that. Episode

Chris Ouellette: 4:31

that Yeah, yeah, exactly. Therapy

Dr. Zuchner: 4:33

in those patients who went through this age that will benefit all the generations going forward.

Chris Ouellette: 4:40

And I'm really fired up about this next speaker. Me too

Elizabeth Ouellette: 4:43

because he's going to help you with your meditation among other issues that you may be carrying around on your

Chris Ouellette: 4:50

shoulders. Exactly. Thank you.

Elizabeth Ouellette: 4:53

So I'd like to introduce our to Austin year. Yeah, Jesus spiritual mentor. He's awesome executive life coach. He's written several books The latest is the art of becoming unstuck. He is the founder of rice realized coaching school, ask Garda, welcome arta

Arda: 5:13

I want to start off with the with the most important concept, which is your emotions. Your feelings are not negotiable. Okay? Period. So whenever you're feeling anger, sadness, anxiety, worry, they are all legitimate. They're all real. You're feeling inside maybe not good enough. We talked about it not recognize this mess and, and lonely and completely ignored and not appreciated. Those feelings are real, and they are yours. And they are not negotiable to this key concept helps you go through this grief cycle. When you first learn about that you have CMT. What was the experience? Like? I'm inviting everybody to go back to that moment. Maybe it's it's painful. I understand that. But I'm asking and inviting gently and kindly to go back to that moment. Because, again, no one can imagine how it was like for you, but you can experience that and you can feel that maybe the shock, maybe the trauma, that is the first stage of grieving process.

Elizabeth Ouellette: 6:34

It might not be just the individual with CMT, but it also could be the parents who just learned their child has CMT.

Arda: 6:41

Everyone involved somebody with the CMT, just learning and friends, people reflect on your pain, a lot of people will be Oh, my God. And immediately after that shock, sometimes, and I'm sure there will be some of you who will deny that no, that's not true. That could be a stage that some people go through. And right after that, Chris Elisabet, right after that, when you are diagnosed, you start to feel that anger that is bubbling up, you will be like, you want to cry, like you want to scream and scream from the top of your lungs and say why me? So after denial, slowly goes into the anger stage. And I'm inviting everybody to reflect on that. Did you feel the shock? And where did you feel the shock in your body, sometimes it just like, like a little cramp in the stomach, the whole punch in the stomach. Sometimes you feel this hollow feeling in the in the lower belly. Very important to really feel that. And then you can inhale and exhale to ease the pain. And whenever you feel the anger, I bet that anger will show up in your body in that spot where you felt the shock where you felt the punch, where you felt that contraction.

Chris Ouellette: 8:03

And what happens after anger. He's saying that experience sadness next. Yes,

Arda: 8:08

you got it. Because after anger, you basically exert your energy. Like when you're angry, like you want to fight, right? So you start to feel that, oh, I want to fight this. I want it. Yeah, exactly. Yeah, the fists are up. And then you're just like screaming and like, I'm gonna fight this. And then all of a sudden, you realize, Oh, it's here. So then you sit down, you almost like collapse, if you can visualize it, that someone going through that, that stage sadness comes in.

Elizabeth Ouellette: 8:44

So yeah, and then even after living years and years and years, maybe you don't even know you're angry. But everything has a shadow or a negative tone, like this damn disease. I can't do this. And I can't do that. And I totally get that and you get so angry. How do you? It seems like it's impossible to let that go. But a lot of our guests do, I don't know, how do you how do you let it go? So they, they switch

Arda: 9:10

that fight and sadness, into acceptance, and through the acceptance, they start to bring their inner strength into their lives. After acceptance, I call it New Beginnings. Because you had life, a certain floor and you got diagnosed. Now you have a new life, a different life. After going through the grieving process, you have a new life, a new beginning, because your energy will be different. After processing that anger and sadness.

Chris Ouellette: 9:51

Isn't this great? Yeah. And just podcast is a gas. Can you dig it?

Elizabeth Ouellette: 9:56

Why are you pulling all these words out of the 60s and 70s You just been yours I'm like thrown off I can't even focus a CES

Chris Ouellette: 10:03

Listen, don't come on glued. Alright. No need to flip your wig girl. Just mellow out sister piece.

Elizabeth Ouellette: 10:11

Right on okay, I'll just try to hang loose just trying to dig this vibe man. All right,

Chris Ouellette: 10:17

as usual, you are now being very weird. Name this pan Lizzo trucking got my chips cashed in keep trucking. Locked do dumb man. Call play. Oh my god. This is a Grateful Dead. All right. Enough's enough says let's move on to today's guest. Mr. Jonah Berger, a true deadhead.

Elizabeth Ouellette: 10:41

Jonah has been a longtime friend. I just sent him a video yesterday, of him talking out of support in action group at the time. It was like 11 years ago. And John was sitting there. I didn't listen to the whole thing. But he was just getting started. I'm sure you were with the CMT before him. But he's a poet. He's an artist,

Chris Ouellette: 11:03

and Jonah, what would you like to leave our listeners with? Or what advice would you love to give our listeners?

David: 11:09

Let's see, I've got a small one and a big one. Okay. The small one is, and again, it's biased because I work for the CMTA. And I'm paid by the CMTA. But I also see frontline what the CMTA does and accomplishes. And I've never been a part of an organization that does it better. I just never have. And so the small one you can do is keep supporting, and that could be financial, ideally. But it can also be participation in things. It can also be connection, volunteering, like there's so many ways to support this organization. But I'm here to tell you all from the frontlines. This organization is worth every minute of your energy and effort and every penny you donate, right, it's beautiful, because not every organization I've worked for, I could say that about but I can about the CMTA. And then I guess the bigger one that I would say that comes directly from my exposure to the youth of the CMTA. And to my work is don't ever, ever believe that the world is a bad place. Yes, the world is going through a lot of issues. And we have a world of work to do on our culture and on the way we prioritize and treat each other. But from the front lines, if you are lucky enough to do the work that I do. You see this side of humanity, there's beauty, there's strength, man, that same thing, as I said about parenting and marriage, we have a lot of challenges on our plate as a community as a larger world community. But it's worth the effort. You gotta keep doing the word because the golden moments are still very much alive. And there's nothing but hope in the future as long as you're willing to stay focused on it.

Chris Ouellette: 12:53

Kenny B's in the house. I love I love it Kenny be one thing we always do on this podcast with our guests, is really asked them based on their experiences, right? Because I picture the listeners listening to this podcast. And it might be someone recently diagnosed with CMT, or not diagnosed with CMT, someone who might be struggling, emotionally coming to grips with their CMT. So just on your experience, what would you say to this community here?

Kenny: 13:21

So when you're first diagnosed with CMT, and you hear those words that nobody's ever heard before, it can be difficult because you're told look, you have this disease, there's no cure, we really can't treat it, we can maybe manage the symptoms, but here you go get out of here. And that's typically the the extent of what it is. And it's unfortunate. But how do you deal with hearing something like that you have something you're born with, you're going to have it for the rest of your life go away. It's difficult to the silver lining in it, at least for me is that although the words are hard to hear, and to digest, CMT itself is not anything new for anybody who's newly diagnosed, they've already been living unless they have an established family history. They've chased that diagnosis for years, sometimes decades. So while the name itself might be new, the disease itself isn't they've already been dealing with it. They've already figured out how to work with it. They've already figured out how to survive with it. And thus far, everybody has survived their worst day ever. What the diagnosis did for me was it provided answers to all the questions I already had. And then for many more questions I didn't even know I had.

Chris Ouellette: 14:39

Yeah, and I think you referenced very powerful prior was like something along the lines like hey, don't stop pushing for answers. They are they're just they are there heat going there. They're

Elizabeth Ouellette: 14:50

never not phrase up, keep go answers

Kenny: 14:53

are there, even after your diagnosis when everybody tells you CMT doesn't cause breathing issues. Keep pushing for that answer. When you meet with a pulmonologist and they tell you now you're fine. If you still can't breathe, guess what? You're not fine. Keep pushing for those answers. They are there.

Bev: 15:14

So folks,

Chris Ouellette: 15:16

we have yo on Bouchard. And you're one. So great to have you on this podcast. I'm really excited to learn.

Elizabeth Ouellette: 15:26

I think you should do the whole Chinese samurai thing

Yolan: 15:29

you got and your question not so like, in the middle of a sense, like play, I was about to say, I'm so excited to be here, but it sounds like you're gonna keep going with something. Sorry.

Unknown: 15:39

Okay, go ahead.

Chris Ouellette: 15:40

You mean to the whole, the whole intro again on

Elizabeth Ouellette: 15:43

our next guest is a young 28 year old Chinese.

Chris Ouellette: 15:46

I'll let him explain that. So. Okay, our next gas. And as I referenced, I am so excited to interview him is Johan Bouchard, my nephew, and I could say a lot about him, but I'm going to hand it over to him and he can give us a lot of information, his age where he lives, what type of CMT he has, etc, etc. And don't forget, he is a Chinese samurai.

Yolan: 16:12

Oh, boy, Chris, I tried to fix that mistake of yours for years. It's Japanese. Okay, sorry.

Chris Ouellette: 16:18

Sorry, Jack Ma. Okay. Okay. I'll get it eventually.

Elizabeth Ouellette: 16:20

But you know what, he's a warrior. He's a CMT warrior. And why do I say that? Yawn? What?

Yolan: 16:27

I'm sorry, I'm not sure where you're going with this. I was going to answer Chris's questions. And then you intervened. I'm very confused. What do you want me to answer

Chris Ouellette: 16:35

for someone who may just have received a diagnosis? And or someone going into surgery? And maybe we go more to someone who's just learning they have CMT? What type of advice or encouragement would you give them as a result of your experiences? Right? Well,

Yolan: 16:50

one important thing is always to find some people that you can lean on, to talk to, to be able to discuss this about so I mean, I don't know what type of CMT you may be diagnosed with. I don't know how severely or affected but I think this is true for all people who are diagnosed with CMT, you know, it's important to have people to be able to talk to to discuss this to be able to rely on to confide into, you know, the CMT isn't like, oh, I can deal with this on my own type thing. It's, I feel, it's something that you need to have a group of people that can help you out. Not necessarily, you know, help help, but like, that you can talk to about any problems you run into that can give you advice on how to deal with things, people that will try to understand ways of helping you in ways that you want help in and not misunderstanding, you know, that yeah, you have CMT, but you can still do things. It's not like you're completely disabled, and can't do anything. I mean, there's always some activities that you can participate in, and it's finding those activities that's so important, and finding that group of people that you can talk to and work with.

Chris Ouellette: 17:53

That's awesome. And um, we want to transition over to Alyssa Lizzo as a parent, and advice for parents who are now experiencing either CMT themselves and or have a child with CMT, what advice would you give them?

Elizabeth Ouellette: 18:07

My advice would be to stay positive. And to talk about CMT, talk about CMT, to your kids normalize it, because a lot of people, a lot of parents feel very guilty to have given the CMT gene to one of their kids. Luckily, we didn't have that because yawns a spontaneous mutation. But even you know, and I think about it this way, we all give certain traits. And genetically we give things to our kids that we don't even know about can be risk for cancer, or heart disease, or high cholesterol or anxiety. So we all have things that we give to our kids. And if the child has CMT, well, okay, you can't go back, you can't change it. So take it as it is. Talk about it. Acceptance is huge. I think parents role model behavior. And if the children feel that the parents are really anxious, or the parent is hates living with CMT, and is very negative, then they're going to emulate that kind of attitude and behavior is not a great disease to have. But again, we can't change it. We're working on a cure, get involved, get involved with the CMTA. Get involved with your kids, you'll be an advocate for people with CMT, and meet others when we have a great camp for kids and great support groups around the country. So I would really say there's a lot of people that kind of want to hide the fact that they had seen the kids have CMT. And, you know, our philosophy has always been do what you can now we did a lot of traveling when y'all was younger, because we didn't know what the effects of CMT were going to be. And I'm really glad we did that. And we talked about it and accepted it and look at you, you're involved to Chris and how have you seen humans evolution over the years?

Chris Ouellette: 19:47

How have I seen his evolution? Yeah. Why now a question that I need to answer. I think, as I stated, he's, again a very confident individual. I think he's very realistic. I love the fact that his positive attitude is getting out there and biking and looking at ways that he can continue to do things and his involvement with the CMTA. And sharing his stories with others is just remarkable. So it's encouraging. I hope it's really encouraging for our listeners. I was just thinking in closing, and I can tell we need to wrap up because yawns kind of yawning and ready to go to sleep again.

Elizabeth Ouellette: 20:21

We received a complaint on the podcast. Oh,

Chris Ouellette: 20:24

come on. Yeah, we

Elizabeth Ouellette: 20:25

did. I met the person gave us a five star review. But then, yeah, planning about well, they wanted me to clear this up right from the beginning. They just said that your Forrest Gump accent was horrible. It was it was like it needs a huge tune up and I was like, yeah, he thinks Okay,

Chris Ouellette: 20:45

well give me one more shot. One more shot.

Elizabeth Ouellette: 20:48

Okay. Well go. I hope you've been practicing because it really wasn't good. My

Chris Ouellette: 20:51

name is Forrest Gump. You want to chalk go lit. could eat about a million and a half on Mondays? My mama always said life was like a box of chocolates.

Elizabeth Ouellette: 21:03

Well, I'm not an expert. We have a woman here with us today. Who is our guest, actually, from Alabama. Love it. Ashley MC Leroy. And I think she's going to help you with that accent.

Chris Ouellette: 21:20

The one who complained? Are you perhaps if you're just such an accent Pro, let me hear your Forrest Gump impression.

Ashley: 21:31

You're ago, okay. Mama always say Good. Laugh is like a box of chocolates. You know what you're gonna get?

Chris Ouellette: 21:44

Me I love it. Is there anything you'd like to say to our listeners or community or any words of wisdom or advice?

Ashley: 21:51

Definitely, with my disability, I've dealt with a lot of challenges, obviously. But, you know, that's just been part of my life, my ability to focus on my abilities, seems like it's harder as I get older, and the responsibilities and the stresses compound. And the limitations in Greece, in 2018, I decided that I was going to do a couple of things, I was going to set a five year plan. And I had three things that I wanted to do, which was get a master's degree, build an accessible home and go to Hawaii. Well, I was lacking so much confidence that I could achieve those things, that when I posted it on social media, just as some images, because I didn't want people to be able to understand what those goals were, and asked me about them later. And a lot of that had to do with my self doubt. I just thought, I'm gonna post this just for myself. But I don't want other people to understand what it means. Each year that I was facing these challenges, took two years to get a master's degree, I beat myself up that entire time thinking you're not able to do this, you're not able to do this. And it was unnecessary, because I did it. And I did it well. And then I started the pursuit of a home and I thought this is too much, you're not going to be able to do this. I just beat myself up the self doubt. Absolutely. None of that had anything to do with my disability. And so what I want other people to realize is your self doubt, can be more of a limitation than any kind of diagnosis you have. What you need to do is find a support group, a group of cheerleaders who will encourage you and remind you what your abilities are. And then also just take it day by day and just achieve those goals. Write them down and work on them. Let's do sir,

Bev: 23:44

yes, do our friends.

Elizabeth Ouellette: 23:46

I said my friend in the notes, David. And he's like, Hey, wait a minute. It's our friend. I know. So our already been excluded. David Tannenbaum. I've known David for quite a long time. He's a psychotherapist in New York, while in New Jersey now because he does Skype or zoom or whatever. But he's been intimately integrated and involved in CMK community. He's a treasure trove of information and knowledge and wisdom, introducing David Tannenbaum. Welcome.

Chris Ouellette: 24:14

Welcome, David.

David: 24:15

I thank you for having me

Chris Ouellette: 24:17

thinking about all the listeners out there listening to this podcast. Is there something you'd like to leave them with some words of wisdom and or something insightful that you'd like to share? Fall was just easy.

David: 24:35

I don't know. I don't know how, how insightful was but having CMT certainly have challenges in your life. It's a difficult life, but it absolutely can be a good life. People forget that. Just because you have challenges doesn't mean that you can have a great life. And I think that needs to be really imprinted in people's heads minds from a very early age because we're so accustomed to thinking okay, if I have some condition or limit pation that that's it, that means I'm not going to have a good life. No, it means that yes, you have to deal with some tough stuff. But you know, in the, in the dealing with this tough stuff, it actually opens up other things in your life. You know, it helps you deal with other things in your life a lot easier. So don't see it as a curse. I'm not going to be pollyannish and say, Oh, great, it's a gift. But in a sense, it's the one thing that will push you forward in your life. Everybody has something some big challenge. So for me and for others, CMT years having CMT, okay, that's their challenge. But that's also what's going to propel them. Some people

Elizabeth Ouellette: 25:35

are just, I feel like, you know, wondering, why are just innately positive? And have they made that choice along the way and others just can't get there? It's so much harder to look at the positive side than the negative side. Is that just attitude? How we were raised a little bit of both nature and

David: 25:53

nurture? It's a good that's a good question. I think some people have generally a higher setpoint on positivity, and I must, in full disclosure, I'm not one of those people. I'm a, I'm a whiny Jewish guy from New York. About a lot of things. So I don't think you have to generally being a inherently positive person. But I do think that you have to get really fed up with your feeling negative to say, Okay, enough with that I got to work on myself to feel more positive.

Chris Ouellette: 26:24

Sometimes you have to hit a low that really will propel you forward, absolute in and not only CMT, but in a lot of different things. And what I find is that it is very common people that have a disability or just for this podcast focusing on CMT. I think everyone we've spoken to Elizabeth has had kind of that low, and we are talking to them. And I'm like, my gosh, they are so positive. But they have gone through some challenging times, and have come out better as a result.

Elizabeth Ouellette: 26:54

I'm really glad. It's really good to get expansion on this youth program.

Chris Ouellette: 26:58

Exactly. And it makes me think it's just great to be young again. You're not young. Totally. I am.

Bev: 27:06

You're so old.

Elizabeth Ouellette: 27:08

I heard your social security number is three.

Chris Ouellette: 27:11

That's pretty funny. Awesome. Well, you're only one year closer to being back in diapers, Liz. Oh,

Bev: 27:18

dude, that's not something you can say on this podcast.

Elizabeth Ouellette: 27:22

That's our podcast. You're really funny. You're so old. Your first car was a wagon and horse.

Chris Ouellette: 27:28

Okay, well, three things at age. Well, wine cheese. And you, Liz. Oh,

Bev: 27:32

Cass enough. Let's

Elizabeth Ouellette: 27:33

get back to our younger generations. today. We

Chris Ouellette: 27:36

Okay, hold on one second. So it's listen. I have these moments, right, where I was listening to the pre recording for our upcoming guests. And I noticed the whole time they're talking I just in the background. I'm like, yep, yes. Okay. Yep. Yep. So real man, if I do that again, I'm like, what an idiot. So no, it's just. Okay, I know. I've literally just caught myself doing it. Oh, there we go. Yes, exactly. So with that, welcome, Dan and John Morgan. And it's so awesome to see you guys again. But you guys participated in the cycle for CMT event last year. And I'll tell you, I just had such a great, great time with you guys. And you are very inspirational and to our audience, you definitely want to listen to this podcast, these guys are awesome. They've taken different paths and lives. They help each other great brothers and awesome perspective on life and challenges. And you're going to learn a lot from these two lists so psyched to have these guys on.

Elizabeth Ouellette: 28:38

Yeah, so um, I if you had advice for the CMT a community out there, what would it be? And I'd like each of you to think that over and maybe given the answer,

John: 28:48

sure, I can go first on this one. Awesome. I think my subtle message is you have to focus on what you can do, and not what you can't. Because focusing on what you can't do doesn't get you anywhere, focusing on what you can do opens new doors to finding other things that you can do. You just have to stay positive. I know it may sound like I'm I'm beating a dead horse with the positivity stick. But keep your head up. And that's great. Dan, yourself. Yeah,

Dan: 29:19

I think John and I feel the same way about a lot of these things. But to build on that, you know, life is hard. You know, CMT won't be the only challenge that you face in life that is going to test your limits and life is definitely not fair. The faster that you accept that and get over it, you know, the faster you're going to be happy and be able to take your future. In your hands. I get really frustrated when I see a lot in today's society, of perpetuation of victim culture, where you have just a lot of people wasting a lot of time complaining about how things soccer that life isn't fair and Talking about how other people should fix these things for them so that, you know, they can live a better life. Whereas, you know, I think that you need to put more of your focus on making yourself better, because there are always things that you can do to achieve better outcomes in life where, as John says, there are a million things that you can do. And if you focus on those things, you know, you can build a really productive career and, and a happy life, I would say, in general, to anyone with CMT, who has any concerns about jobs and employment, don't hesitate to reach out to me because there are so many jobs out there that you can do. There are so many amazing adaptive technologies that can allow you to interface with computers, which can allow you to do whole time different jobs. I'm 100% Positive video find your way there. You just need to focus on the reality of of what you can do.

Elizabeth Ouellette: 31:04

And you guys are great. You are do this, like talk to you every week know what to say? No, I

Chris Ouellette: 31:10

don't think they're excited for that was outside. Okay with maybe John Wood. I just find such a positive environment with those that do have CMT. It gives you encouragement and strength to continue to try to fundraise and find a cure, because it's just such an awesome community. You know, you don't find people that are sitting there looking for sympathy. And they are talking about what they have accomplished and what they can do. Some folks say, hey, if I had a chance, I don't know. It's hard, right? Some folks would be like, obviously, I wouldn't want CMT. But CMT has really made me into this incredible person. And that is very heartfelt warming and touching to me to hear those stories,

Elizabeth Ouellette: 31:54

parents or siblings, our community, our family. Everybody's involved, I meant to hesitate.

Chris Ouellette: 32:02

I hope mom's listening because we need her to make a big donation this year. I

Elizabeth Ouellette: 32:05

know this is the reason we're mentioning her.

Chris Ouellette: 32:09

your checkbook mumsy, Mama, press.

Elizabeth Ouellette: 32:13

These two are amazing. They're really longtime friends. I've known them for like 20 years. Seems like that. Yeah, but 20 years and they're CMT advocates. These two have been married for 60 years. That's how old I'm going to be in December 60 years. So that's a that's a long time and

Chris Ouellette: 32:31

I've been married 27 Wow,

Elizabeth Ouellette: 32:33

we don't care. So let me talk to you about it's about our guests. Okay,

Chris Ouellette: 32:38

let's refocus, keep me on track.

Elizabeth Ouellette: 32:41

Today we have Beverly and Frank Roselle. Beverly was a cmp, a branch leader and she started around 2005. And is to date the longest standing branch leader with her husband, Frank. And she's even one Volunteer of the Year award. I mean, she is amazing. And we're going to hear from both of them very soon. But Frank is always by our side. She's a determined fundraiser, a natural people person, and a fierce advocate for people with CMT. And Frank, he always makes people laugh. He just makes people laugh. He's funny. They make a great pair. Wow. A couple Beverly and Frank was out.

Chris Ouellette: 33:23

These two have a lot to say, folks, and they have a great approach to fundraising, strong beliefs which drive them every day in everything. They do a commitment to the CMTA finding a cure for CMT, and are definitely not a pair who sit on the sidelines. They are engaged. So welcome, Frank. Welcome, Ben.

Bev: 33:46

Thank you so much for having us.

Elizabeth Ouellette: 33:48

Let's start from the beginning. For our listeners. Tell us a little bit about yourself and your relationship to CMT and CMTA.

Bev: 33:55

I knew something was wrong and about 35 years old, and was my lateral stability from one foot. And I said something was going on, but when two Shoemaker, and he put a lateral wedge on his shoes, and it was good for years after that each time sneakers and have that lateral wedge put on. And it wasn't until years later that I developed foot drop many, many years later. And I said no, there's something definitely wrong here. finally diagnosed with CMT. At about that time, I found that that there were actually groups that meant they will call support groups.

Elizabeth Ouellette: 34:34

That's right, our support groups and member when they were called support and action groups.

Bev: 34:40

It was very far the one that was closest to my house was at least an hour away. But I did reach out to the branch leader at the time.

Elizabeth Ouellette: 34:47

Why did it take you so long? So when were you diagnosed?

Bev: 34:50

I was diagnosed just a couple few years earlier than that when I didn't know for drugs. I didn't know what to expect from a branch. I didn't know what to expect from going to We're meeting what type of people that I've made, I was already reluctant. It was a brand leader that cold and over and over, please come join us. And I said, I'm not ready for this yet, you know, maybe maybe next time, and she was just could not have been kinder. And she said, please come. She said, you will feel very comfortable. I promise. I said, Fine. I said, you know, took me a while it took me about a year, I said, but don't expect me to say anything. So Frank, and I finally went, and I was just blown away. I mean, I didn't stop talking the whole time.

Elizabeth Ouellette: 35:36

Miss Hart, it's

Bev: 35:37

a hard disease. You know, sometimes I feel very sorry for myself, I have friends who are my age, and then some of them are losing their spouses, others are struggling with other disabilities, or other illnesses. And in my head, I know, I'm glad for what I have. Thank God, it could be worse. But I also know how challenging it is for me. And how much over the years how much of a change there has been. It's been slow. It's been it's been it's been progressive. And I get angry, because I can I can I, why can I go to the supermarket? Why is it so difficult? To me to to get out of the house to walk with the braces? Do I take the cane? Do I not take the cane I I'm angry at my dependents. I think if I have to say one thing, I'm angry at my dependence on Frank, but on the same flip of the coin. Bank is dependent on me for so many things. So I think it equals itself out, you know, he does so much for me, but I do for him as well.

Chris Ouellette: 36:43

One thing that I recall you You both said yesterday, is also some of your motivation and getting engaged is it keeps your mind off of all those things you just talked about. Where you can sit there and just worry about all of that. And you staying engaged or going for walks or running the branch and fundraising keeps your mind off of that.

Bev: 37:02

It's the most gratifying feeling I've said, I said this at the beginning of the podcast, when somebody calls up, and they don't know what to do, and they just had been diagnosed themselves or had a child recently been diagnosed, and they don't know where to turn. And for me to say, perhaps I can be of help to you, perhaps it helps so many people along that way. I've told them about centers of excellence. I've told them about some of the doctors, some of the researchers that I know and, and to feel hopeful. And that's what I'm feeling I feel because of all the years that I've been doing this, I feel very, very hopeful for the future, but not so much that I will benefit by by the research. But research is definitely on target. It's definitely advanced so much that 20 years. And I am hopeful by the time that this child needs any type of intervention, there's going to be treatment, there'll be a cure, there'll be no issues. Get it out of your head, that child is going to be fine. The CMTA and the people, Elizabeth and Gina and so many have become family. To me, it's a second family is somebody I know who will get on the phone and say what's wrong. I haven't heard from you or what can I do? What can I do to help you? You know, many of the people I don't know, but the newcomers there was so few. And now there are so many.

Chris Ouellette: 38:27

So you guys do an unbelievable job. I hope I hope now I'm part of your family now that I've got well.

Elizabeth Ouellette: 38:36

Next match for one a Bev, you got to call Chris and ask him for a donation. And have him double it. Challenge me

Bev: 38:44

Chris on that one.

Chris Ouellette: 38:47

I know I will lose Lizzo we've been getting some feedback from some of our listeners, has anything surfaced in the last week?

Elizabeth Ouellette: 38:54

You know, I was talking with a gentleman who did the cycle for CMT. And he said, Boy, we really liked that podcast. I saw you listen to what he said, You know, I came home and my wife was sitting there after listening to the podcasts and she was crying. And she wasn't crying because she was sad. She was crying because she listened to Erin and Emily and she empathized with those two young women and their courage and the way that they spoke about CMT and embraced it really affected her emotionally. And since then, she's been more open about her CMT. She got out her cane, she's been using it, and thanks to the inspiration of our young adults in our podcast interview is so there you go.

Chris Ouellette: 39:37

Wow, that blows my mind. I mean, it's just just a good feeling inside. The podcast is having an impact. And, you know, that's why we're doing it folks. And more importantly, it's hearing from our guest speakers that have a lot to offer. What would you like to say to the CMT community, whether it's any advice or through your experiences and a big part of our podcast is that people sharing their stories and what would you like to say? And what could people learn and the floor is yours.

Aaron: 40:05

First of all, thank you again for having me on. And I would love to come back some time if you guys need a guest. So I guess part of it, you can hear from my own story of trying too hard in some ways to be normal, or just whatever normal is, you realize at some point that really there is no normal, everyone's different everyone is unique in their own way. So if you get involved with the CMT community, on whatever level that might be stepping outside of your, your own household, you're going to find some awesome people out there. And I mean, tons of awesome people, our community is just unbelievably supportive, encouraging. And not only that, but they need us and we need each other because of the way life you love came out organically. And I wanted to get that message across to some kids, because I actually just put one foot forward and did it. I've been again a camp counselor for years now. And now probably hundreds of kids have heard the songs and growing so get involved and try not to be too clammed up. And in your own shell, I guess, Step on out and do something big, awesome message.

Elizabeth Ouellette: 41:07

Thank you so much,

Emily: 41:08

Aaron, just look up in the mirror, you are beautiful as you are, you're unique. I would ask myself before like, why on earth? Did I get this? Why would I get this? Why can I just be normal, and then just hit me I am normal. I'm normal the way I am. This is my normal state. This is my body that I was given. And all of a sudden, I started to appreciate myself in another way, in a whole different way. And I still do that actually still. Do you look on the mirror and talk to myself? That's great. My sound a bit crazy. But

Chris Ouellette: 41:38

no, oh, it's very inspiring. So listen, I just want to jump through the screen and give you a big hug. I

Elizabeth Ouellette: 41:45

know, I know.

Chris Ouellette: 41:48

I am like teary eyed with joy just on your story. You are an amazing individual. Jeff, before we get to the fun questions, what advice do you have for the CMTA? Community? Well,

Jeff: 42:00

I would say get on the blogs, right and follow those because they're oftentimes fun, like people will post really fun things. And the questions people asked might be really relevant for you. I know as a teacher, I tell my students like when you ask a question, you're doing other people a favor, because they may be too shy to ask the question, they may feel like it's stupid, ask the question, or they may not be able to formulate it properly. But there's people out there that will really help you with your own problems, I think and have great ideas, and then also work within your limitations to be just a little bit more active. Because it does do a lot for your attitude. And then you overtime, you might, you might find that you can really do a little bit more, just find yourself, because I know that they have enormous challenges. I mean, it's really overwhelming, don't,

Julia: 42:53

I like really appreciate the little thing. And I really think I learned that from my dad, because I'll come in at night to go in my room. And my phone's plugged in. And my computer's plugged in and there'll be juice boxes next to my bed and a cold water and clean out my needles out of my insulin kick. And I never do it. And I'll do it cleans it out. And he puts fresh ones in. And that's actually something that I like, just love about him so much. And it's actually something that I've noticed Michael does too, like he'll leave my charger, kind of on my like dresser instead of on the floor if I can reach it easily. And that's why I really wanted to say like the little things. You're, you're the best at

Unknown: 43:40

that. Yeah,

Elizabeth Ouellette: 43:41

so some

Chris Ouellette: 43:42

things. I think big things are great. But I think more little things matter than less big thing.

Elizabeth Ouellette: 43:49

Thank you. That's awesome. What advice can you provide our listeners, like some words of wisdom going forth in their lives with CMT?

Stephanie: 43:58

I remember I was giving a talk in Michigan once to a CMTA support group. And there was a young girl in the audience. And I was like, oh, man, I feel bad. She's probably bored and dragged here by her parents. And after the talk, I took a q&a and she raised her hand. I was like, Oh, yeah. You she said I have CMC. What advice would you give me? I was like, Wow, all right, Bethany, like, screw this up. And so I told her life can be fantastic. I told her that growing up, I looked at my mom who doesn't have CMT. And I looked at the life she had lived. She had been to 30 countries. She lived in a castle she lived off ship. She was a black belt. She lived this incredible, vibrant, adventurous life. And for a while I thought that that was inaccessible to me because of my CMT. And I learned that I was wrong. Right there may be limits on my body weight I test, I test them regularly. But there are not limits on the quality and the vibrance of the life that I can lead. So that's what I told her. And that's what I would tell anyone listening is that life can be fantastic.

Chris Ouellette: 45:15

Do you have any advice and or insights, as we close that you would like to share with the CMT community?

Male: 45:22

I think you've said it, I understand where the hope is dead in so many when it comes to their feet. And it doesn't come from having a bad disease. It comes from having been given hope so many times and have it taken away today more than ever, with groups like the CMTA, you can find someone who can truly assess not just for surgery, but for other aspects of your care, physical therapy, bracing, whether or not there is hope. And there is. And I think, in general, what we said before is, if there's something you can fix in your life, fix it, whether it's your feet, or your relationship with your spouse, because there's so many things that just are not going to be fixable for us. And I commend and I admire and you've given me strength all the CMT patients that have taken their fear and put it in their pocket and look life right in the eye. And forged ahead. And I know almost all of you are better because of it. Fantastic.

Female: 46:24

One of the things that I do often if I'm having a bad day, and by no means am I saying that I don't bad days, I do like there, it's tough, this isn't easy. One of the things that that I will do is I'll listen to a podcast or listen to a podcast of something that is going to be not just uplifting, but it's going to remind me that I am the creator of my life, it's going to remind me that I have a choice of how I want to think today and who I want to be today, reading something listening. Sometimes when things are bad. I'll wake up in the morning and I'll put on like dance music. And every time I'm doing that, I'm like, Why do I not do this every day? Why don't I remember this every day, it puts me in a completely different state of mind. barging in the kids rooms and being like your lane, I can't believe how hard is it to be on time I just walk in their room and I start doing like, how different of a day is that kid gonna have just based on me. So that's one piece of advice I give breathwork. I always like I always want to say it's not brain science, except that it is literally breathing, literally breathing in and out of your heart, focusing on gratitude, focusing on appreciation, focusing on a fond memory for 60 seconds, a minute, two minutes, five minutes, you can physiologically change your brain and body, literally. And we can see it with your heart rhythms. I have actually a device from Heart Math that I use that I can literally see my heart rate values change as I'm breathing. And you can do it while you're talking to somebody it doesn't even have to be a big deal. Meditating is huge. Get on that app, that Insight Timer app, they have every type of meditation you could ever want music guided five minutes an hour, spend time going inside, so that that you can begin to become more conscious of the thoughts that you're having, that are really derailing you all day long.

Elizabeth Ouellette: 48:13

So

Chris Ouellette: 48:14

so if someone wants to learn more about CMT, and or to donate to our cause, where should they go?

Elizabeth Ouellette: 48:20

www dot CMTA usa.org There's so much information on the website, you'll be blown away.

Chris Ouellette: 48:27

And you got it folks go to the site, save this as a bookmark ongoing information daily. And you know, live so as we've heard from our guests as well, it takes a lot of money to fund research in order to find a cure for CMT. If someone was so inclined to generously donate to our cause. Please go to cmta.usa.org

Elizabeth Ouellette: 48:48

No, it's not. Let me do that. Oh, yeah. PMTA usa.org. Okay, okay. That's all right. And turn listeners to have a good story. Would you like to be a guest on our podcast, CMT, for me, will write to us, and it's CMT the number for me. podcast@gmail.com CMT the number for me. podcast@gmail.com Tell us about you. And we'd love to

Chris Ouellette: 49:20

hear. And Lizzo reviews are so important for promoting this podcast. Absolutely. Where does someone go? Who wants to write a review? Yeah. So

Elizabeth Ouellette: 49:29

if you listen on Apple podcast, you can leave your review right there. And we've gotten some great reviews, so keep them coming.

Chris Ouellette: 49:36

All right, Liz. Oh, you have a good one. Love you.

Elizabeth Ouellette: 49:39

I love you too, Chris. Oh,

Chris Ouellette: 49:41

and let's finish strong. Here we go. Ready, Liz? Oh, yeah, right. Yeah. All right. Two, three. stod spread, spreading the news.

Elizabeth Ouellette: 49:52

I'm the evented Hey,

Chris Ouellette: 49:55

want to be a part of it. New You're in New York.

Elizabeth Ouellette: 50:04

Those Vagabond shoes.

Chris Ouellette: 50:07

Oh my goodness. They're longing to stray right through the very heart of it. New York All right, we definitely don't have a music career folks. Take care everybody. Till next time adios. Bye