Stories of the much Admired

Groovin’ With Jonah Berger: Camp Footprint and So Much More……….

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In addition to providing services to adults with CMT, the CMTA provides services to children and teens who are also aware of the struggles that they face every day. Jonah Berger and his team have helped the CMTA transform youth into leaders and fulfill their dreams at Camp Footprint for nearly twenty years. His book The Strangest Of Places was published in 2021, and it is a collection of stories that will leave you laughing, crying, and inspired.

As part of episode 18 of the CMTA’s official podcast, CMT 4 Me, Chris and Liz O. discuss Jonah Berger’s experience with CMT and his role with the CMTA, as well as who Jonah is and what he is passionate about.

Jonah: My role at the CMTA, my official title is the National Youth Programs Manager. So, to boil that down into human talk, I run the youth program and I am responsible for working side by side with the team and with the leadership of the youth to come up with programming and offerings for the youth, connecting the youth throughout the year, and then the big shiny diamond at the top of the mountain Camp Footprint every year.

Chris: Jonah, how did you stumble upon the CMTA? Did you hear about us in a support group?

Jonah: I remember the very day I went to a Patient/Family Conference in Washington, D.C. My mom had signed us up to go and I went with her and I met Jeana Sweeney that very day.  That was my first kind of true introduction to someone official with the CMTA. I met Jeana when I first arrived at 9:00 AM. She was the first one I met. By the end of the day, I had also met Elizabeth, who also blew my mind. There are probably thousands of people out there who could easily agree with me. Jeana’s enthusiasm and passion for the mission was infectious. By the end of that day, I had met many people through the organization that just impressed me with their grounded nature in what they were up to, and the fact that they weren’t afraid to have fun and laugh while they were doing it. I caught that day one, and I would say that from then on it was just trying to volunteer or help in any way that I could, and the rest kind of took over organically.

Chris: What type of CMT do you have and some indications of your existing symptoms, and whether those have progressed over the years or where you were 10 years ago? Tell us a little bit about that history?

Jonah: I have CMT 1X, as does my mother, as did my grandmother, as do two of my aunts, and three total out of nine cousins on that side of the family. I have two kids now. I have a three-year-old daughter who does have it. I have a three-month-old son who does not. We know this because with CMT 1X for men, such as myself, every daughter I have, I’ll have given my X chromosome, therefore she will have it. Every son I have, I’ll have given my Y and he will not have it. So we didn’t know what we were having both times, but when they showed themselves to us, we knew right away if they would or would not have CMT.

 I would say that my overall effect is pretty balanced. I’m quite an active person. I bike a ton. I’ve done a lot of hiking and crazy things physically in my day. I would say that I have been noticing in the last few years, especially in the last year to two years, that I’m having more trouble with balance than I did before. And as Dr. Shy explains it to me, that is not necessarily at my age.It is the progression of CMT as much as it is CMT working with an ever-aging body. So at the same level, you kind of plateau at a certain point in my case, but as I get older, that same level will appear to be more severe because I’m getting older. 

Elizabeth: I was reading your book,The Strangest of Places. Is that the whole title? 

Jonah: The Strangest Of Places, which is a Grateful Dead quote.

 “Once in a while, you get shown the light in the strangest of places if you look at it right” -The Grateful Dead

Elizabeth: I’m just reading that and devouring it. I’ve learned a couple of things about Jonah, Chris. He was traumatized at a young age by a very mean teacher who brought vegetables in every morning and cut them up, so he never eats healthy. I mean, never even celery. It’s fun reading his stories and he loves nature and he’s out camping. But Jonah, you never mentioned CMT in this book. I’m halfway through. All I know is your father’s chasing after you. You jump in your room, lock the door, and he’s grabbing your foot. I mean, there’s no mention of hobbling over. So I was wondering when you were younger, did you have any symptoms? When did they start? 

Jonah: When I was that age, no, I was pretty quick, or else he would’ve caught me. No question about it. You did not raise your voice to my mother when you were in our house, which is a good rule now in retrospect, but my biggest concern being the pickiest eater on the planet was what was gonna be for dinner every night. I would call out to my mom, “Mom! What’s for dinner tonight?” She had her canned answer. You’ll find out when you get to the table. Which is for me, you’ll find out in an hour if you’ll eat or not.  

I wasn’t having that. So one night, I had it. I don’t know how old I was. I was probably eight or nine. I said,”Mom, what’s for dinner?” She said,”You’ll find out when you get to the table.” Don’t ask me what came over me. But out of my nine-year-old mouth, I said, “Mom, what the F is for dinner?” And all I heard was my father coming up the steps… My father’s giant feet. I ran and I managed to make it to my room and close the door and push my bed against the door. That’s before my dad got to me.  

I didn’t really start showing symptoms per se until I was closer to 13. I would say that’s when I really could tell that my feet were getting a little weaker, that I was having a little bit of trouble doing things that should be completely normal for a 13-year-old. And then, by the time I was 15, you can tell in pictures of the way I walked in videos that I was stumbling more for sure. 

Chris: Jonah, were you engaged in sports when you were in school? 

Jonah: I was. I played soccer for a few seasons as a kid.  I was the manager of the girls’ volleyball team in high school. They were seven times state champs and they were tall and lovely. So it was a great situation for me. I had found a way to become part of a sports team without having any athletic ability.

Elizabeth:  It sounds like you were never really shy. You mentioned a lot of crushes in your book and like the sun rose and set in her eyes, you know, like things like that. It doesn’t sound like you were a shy kid, even though you were traumatized about going to school when you were younger.

Jonah:  I was not a shy kid by nature. I was a very outgoing spirit by nature. I think what happened in kindergarten (which we laugh about a lot) was a teacher who just lost her cool on me as a kindergarten kid and it did traumatize me for several years. I became shy as a result of that, but I think through a lot of love for my parents and through summer camp. Quite honestly, that’s what brought me back out of my shell and kind of into my natural way. 

Chris: Jonah, if you don’t mind, what happened? What was that experience in brief? 

Jonah: Mrs. Preston, who we call the Pickle Witch in my family. There is a chapter, by the way, about CMT. You’ll get to it in the second half of the book. I had the best kindergarten teacher in history. Ms. Gillespie. She was so great that they promoted her in the middle of the year to a high-level position in the county. First mistake. You never take a teacher out of the classroom at that age unless you have to. They replaced Ms. Gillespie with Mrs. Preston, who decided she was going to earn the favor of these kindergarten-age kids by instituting a vegetable tasting day every Wednesday.

I was already a picky eater. So she would bring in a vegetable, cut it up, and we’d all have to come up, take a bite, and say what we thought of it. I was having nothing to do with vegetable tasting day, and it all came to a head on pickle day. She brought in a pickle. Cut it up, we came up to try it. She said, “Jonah, will you come up and try it?”

I said, “No, no way.” She said, “Jonah, come up and try it.” I said, “No.” And then, evidently, I don’t remember her screaming, but the room mother told my mom, she just lost her cool and started screaming at me. I went under a table and grabbed the table legs. Mrs. Sullivan, the room mom, went to the office, called my mom, and said, “You better get down here.” They peeled me off my mom kicking and screaming every day for the rest of kindergarten, first, second, and part of third grade. 

Chris: Wow. So that went on for quite a while.

Jonah: It was a very traumatic pickle incident. 

Elizabeth: How did these experiences of early life help you? Because you’ve always been interested in helping kids with differences with different abilities. Did that have anything to do with the future of helping kids be themselves or find themselves? 

Jonah: I would say CMT was major. My dad is like the king of all times with a teacher, camp director, and childcare. He was just the maestro.  I think I was always kind of inclined towards working with kids, but my disability helped me to steer that passion into working with kids with disabilities. I think what happened to me as a kindergartner made me extra attentive to the kids who are on the fringes. So on the first day of camp, I am always laser-focused on where the homesick kids are. Let me give them extra love because I know exactly what’s going on in their gut at the time. 

Chris: I want our listeners to learn more about Camp Footprint and what you have done, and it’s just such an incredible event. So why don’t you tell our listeners a little bit about Camp Footprint and what that’s all about in your role and your attitude towards it and what you get out of it, et cetera. 

Jonah: Well, in 2016, the organization decided it was time to get a camp together just for kids with CMT because the avenue had always been a Muscular Dystrophy Association camp, which is a beautiful avenue. I’m a huge fan of the MDA’s Camp Program. But MDA is an umbrella term that encapsulates 50 different disabilities and diagnoses. I think that CMT, being as prevalent as it is and specific as it is with its symptomatology, needed its own program and they happened to have someone on their advisory board, myself at the time, who was a camp director. His whole career with CMT and was used to working with kids with CMT, so thank goodness it was a no-brainer because it is the greatest joy I’ve ever experienced professionally in my entire life. I’ve been directing eight different camp programs now, including Footprint. And I’ve never seen anything like it.

Jeana Sweeney and Jonah

I’m biased because I help to plan and run it, but there’s something bigger than any one of us that goes on when we get kids together who are used to being the one in their friends’ group, some of them, the only one in their family to have a physical disability, the one that is looked at as abnormal and all of a sudden you put them into a situation where a hundred other kids or 99 other kids and three-quarters of the staff and the director has CMT and not only are they understood, but they are understood about one of their most personal challenges without them having to say one word and they know it. And as a result, everyone relaxes. And I don’t put a lot of value on normalcy, as you can probably tell. They are allowed and gifted the ability to feel normal, some of them for the first time in most of their lives. And it is so cool to watch what happens to a kid when they’re not trying so hard to cover something up, when they can just relax. And that’s the bottom line behind the success of Footprint.

Elizabeth: Bring us through a day in the life. 

Jonah: This was the first year of Footprint 2016. On the first full day when the kids were there, the first morning I got up, I grabbed my braces with my right hand, and my shoes with my left hand, and I came out and I sat down on the couch in the common area of the boys’ cabin, and I started doing my morning routine of five minutes of getting my legs strapped on. At one point, I turn my head to the right and two little boys are sitting next to me on the couch putting their leg braces on. And it was the first time in my 43-year-old life at the time that I had company, and I had company that got it, and it was really a pretty incredible moment. We have breakfast, we do chair dancing every morning after breakfast, which is our way of exercising without having to have balance be a part of it.

So everyone sits in chairs. Bridget, our unbelievable Director of Greatness, is leading it. She’s a dance instructor and so many other things, but brought chair dancing to the kids and it is one of everyone’s favorite parts of the day. We just rock out and get our hearts pumping and no one has to worry about tripping or falling. I love it.  After dancing, we go to activities in the morning. We have activities in the morning and afternoon. They are traditional camp activities. We do boating and swimming archery! Wall climbing, zip-lining, and fishing. It’s just so fun. And it’s a camp that is designed for disabilities. So everything is adaptive. Their attitude and our attitude is, if you want to do it, we will figure it out. We will find a way to get you to do anything under the sun. 

Chris: I think that’s so cool. All the activities you offer and I can only imagine, you must have some of the attendees very hesitant to try some of these new things, right? They’ve never done them and maybe in their mind they’re thinking, I don’t think I can do this. So it’s gotta be such a cool feeling to see them participate.

Jonah:  When we are there we ask, “What do you want to do?” We’re never saying, “you can’t, you shouldn’t, you need to do this activity instead of that activity.” We’re saying, “What do you want to do?” If a kid wants to get up to the top of the climbing wall, we’re gonna get that kid to the top of the climbing wall. If it takes three people climbing around them and helping them, they’re gonna get up there. I think that’s different from what they experience in typical days of their lives. 

Jeana Sweeney, Jonah and Laurel Richardson

We do lunch. We have rest time after lunch where no one rests, but we all hang out and talk. I think honestly, my favorite activity at Camp Footprint is sitting around and talking to the kids, and the other counselors. It’s as important a part of our day as any other part of our day because the whole goal here is connection.  Tapping into the understanding, you get from these other people. So we don’t want you just running around the whole time doing activities. We want you balanced between running around doing activities and sitting there and just talking or listening as other people say. Things that sound like they’ve come directly from your own experience. 

We swim in the afternoon, which is so much fun. Then we do dinner, and then we do an evening activity every night. The evening activities are always a blast. We have a dance, we have a talent show. Usually, at one point or another, we do a campfire the first night of camp where I do a drumming circle with everyone and we sing and it’s just wonderful.

It’s funny as a camp director and as someone who’s done triathlons and climbed mountains and done all these big things, I tend to get an inflated sense of ego from time to time. My wife will tell you. But then you hang out with these kids who are facing some unbelievable challenges in the most graceful of ways, and I’m reminded of humility every year at camp, I am reminded of the absolute vital value and importance.

Connection to others, not just of your own tribe, but of each other. I think the biggest gift that CMT gives us and that Camp Footprint gives the kids is the reminder that we need each other. We can’t really function, especially happily unless we’re together. We were designed to be in a community, and that’s why camp is my favorite place in the world and that is why almost every kid and counselor who comes to Camp Footprint goes home thinking the same exact thing. It’s a yearly reminder for me to keep on going even though I appear to be pretty confident with my disability.

My disability causes me a lot of internal struggle and I am aware that people are looking at me all the time and I am self-conscious as a result of my disability. Whether I show it on the outside or not, I am. Camp is a reminder that you’re great the way you are. 

Elizabeth: There are times I have an internal struggle. Do you bring your struggles to camp and talk about it?

Jonah: Yeah, I am completely honest with the kids and counselors.

Anyone at Camp Footprint will tell you. They know me inside and out. There’s no holding back. At that point, the kids, for the most part, are so mature. They just get it because they deal with struggles. They don’t have the luxury of ignorance. They have to be engaged. And as a result, we get some pretty amazing kids.

Jeana, for example, while she’s amazing, is an example of adults being children locked in adult bodies. So not all adults are mature. That’s why Jeana and I get along so well, but everyone’s on the same level. At Camp Footprint,there’s no separation between admin and counselors and campers. CMT cuts through all of it and we all function on the exact same plane, and I think, as a result, it’s just easier to develop a connection that way. 

Chris: Jonah, do you have an experience at Camp Footprint that you can remember where you feel like you really influenced one of the campers, or maybe they were struggling with something?

Jonah: There are two that come to mind. There’s a chapter in my book, Elizabeth, it’s called The Golden Pine Cone, which is kind of my wife and I’s love story basically. Let’s just say it has to do with the Golden Pine Cone, but one year earlier, at camp, we got back from Lake Day, we got back and there’s some downtime where we’re all sitting on blankets on the field and I happened to sit down with a group of about 10 kids. I don’t know why, but somehow the Golden Pinecone story came up. So I told the whole story and now it’s a tradition. Every year on Wednesday afternoon, I find a new group of kids.

I sat down and told them the Golden Pine Cone story. 

So far it’s been going over well. That’s an example of sharing my 50-year-old wisdom with these kids any chance I get in any creative way that I can model for them. That no matter what your circumstances, you don’t stop. You keep on going. 

The one story that sticks out in my mind is there was a camper who was pretty shy and didn’t want to be in front of others but made it clear that she loved to sing. But she was terrified of singing in front of other people. That year, on Wednesday night at the Night Swim, I think it actually was Jeana who encouraged this kid to come to the edge of the pool and got everyone to be quiet.  I was in the pool at the time playing ball with the kids and everyone was quiet. Everyone came over to that side of the pool and this kid sang her song. Wow. An entire song for the camp, and her voice was shaking like nothing you’ve ever heard. She was scared to death, but she was doing it. And the applause that erupted when she was done with her song was the most magical thing I’ve ever seen. I’ll never forget it. Hannah Roberts and I looked at each other and we had tears in our eyes. Unbelievable moment because that’s it, it’s an illustration of what Footprint’s all about. It’s like whatever it is, that’s your mountain to climb. If you climb it during camp, you’re gonna have a lot of people cheering you on. That was kind of a shiny example of that. And you could see this kid just growing. Infinitely in that one moment, and I see that about a hundred times a day. It’s pretty cool. 

Elizabeth: I can’t thank you enough for doing what you do. I was skeptical at first of camp when the idea came up, and I told you that many times and throughout the years the feedback has been phenomenal. 

So tell me, we have Camp Footprint, but we have other youth programs, so I get confused about Youth Council and Compass and what are we doing at the CMT with all these programs.

Jonah: So my kind of focus in the first few years was to establish infrastructure within the youth program. That was the first big step to that was the youth council. The youth council and a lot of the ideas for the youth program came from one of the youth council members who is about to age out of it in three weeks. But Erin Black came to me one day and she said,”The youth at the CMTA don’t have enough of a voice. We don’t have a seat at the table.” And I said that’s something that ought to be fixed and is fixable. Because I knew that the adults at the CMTA were heart filled. Like you just have to push and so we did. 

The youth councils are a group of kids who show themselves to be organized, passionate, and dynamic. Natural leaders.We gather them, we use them as a kind of a youth board of directors to bounce ideas off of. We develop fundraisers, develop programming. A lot of my ideas throughout the year, I’ll bounce off of them because they are the ones representing the very kids who are going to be benefiting hopefully from those ideas. I get a lot of my ideas from the youth council and then I go run with them as things I institute into the youth program. So it’s an invaluable group of kids. We meet once a month. They’re on committees. They have a fundraising committee, a special projects committee, and a social media committee. They do unbelievable work and it’s all voluntary.  Navigating the world of CMT or life with CMT with other young adults. 

Elizabeth: I just wanted you to say a word or two about Compass. What are the age groups for that? 

Jonah:  Compass is our newest program for 19 to 29 or 30 years old. The youth program is primarily for 10 to 18-year-olds. I believe the CMTA should be supporting someone from birth to death and everything in between. We do a ton of that already, but there are some holes in our system just because it hasn’t been done yet. So we’re filling those in.

I have a lot of ideas. They have to be futuristic but for the whole infant, toddler, and young kids. phases. We connect parents as an organization, but there’s just even more that I would love to develop around that. Once a kid is 10, they can come to Camp Footprint. They’re involved in programming for the youth program. When they turn eighteen or nineteen, that’s when they start evolving into being young adults and applying for colleges and needing to keep accommodations in mind and dating and sexuality and all of these things. We decided that was the next step in the process. So we created Compass. 

It is a monthly meeting online to start with that covers a different topic each month. They’ve done a month on symptoms and what you use to help you. They’ve got a list of unbelievable topics, including accommodations at college, dating, and sexuality. Who better to talk to than other young adults in your position? And young adults especially are a group that was overlooked because I think the branch system that we have developed over many years, tends to run in older adults. So younger adults don’t often flock to that model. It’s not their jam. We wanted to create a jam that was just for them. My huge belief is that I can help to plan it, but I don’t run it. I’ve got Julia Beron who was on your show. Katerina Ballsmith and they are two young adults with CMT who are running this program with my support and help. I want young adults to show up and be served by young adults. The youth movement’s slogan is Youth Empowering Youth. Not a 50-year-old empowering youth. It’s empowering youth. 

Chris: So, Jonah, if someone in our audience with CMT, a youth, et cetera, how would they go about learning more about these opportunities to participate in these programs? Would they reach out to you directly? Do they go to the website? What’s the information you can share with the community? 

Jonah: They can do one or the other. So my information, I’m hoping you’ll spread it far and wide, is Jonah@cmtausa.org. People can contact me any time of day. The best way to get all the information under the sun in one place is our website, which is CMTAUSA.ORG 

Chris: What would you like to leave our listeners with or what advice would you love to give our listeners as we close?

Jonah:  I’ve got a small one and a big one. 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.  It can also be participating in things. It can also be a connection or volunteering, as there are so many ways to support this organization.I’m here to tell you all from the front lines. This organization is worth every minute of your energy and effort and every penny you donate. It’s beautiful because not every organization I’ve worked for I could say that about, but I can about the CMTA. 

I guess the bigger one I would say comes directly from my exposure to the youth of the CMTA and my work. Don’t 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 in our culture and on the way we prioritize and treat each other. But the same thing from the front lines. If you are lucky enough to do the work that I do, you see this side of humanity, this beauty, this 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 work 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. 

Guest Blogger: Kenneth B Raymond Tackles the Question – How Do You Explain CMT?

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Eleven years ago, late CMTUS founder, Gretchen Glick and I talked about starting the first ever CMT Awareness Week. The 2 organizations (CMTA and CMTUS) worked collaboratively to get the word out about CMT. At the CMTA, I had posters created, wrote email blasts, and asked our branch leaders to spread awareness through groups across the country.

This first CMT awareness week was so successful, that the following year, we dedicated an entire month to CMT awareness, and somehow, Gretchen got American radio host, Shadoe Stevens, to do a PSA about CMT. Listen to this 29-second clip from 2012:

Eleven years later, it is still hard to explain CMT. I read Kenny Raymond’s latest blog post where he addressed this issue, and he brilliantly defines some of the challenges of explaining what CMT is. Thanks, Kenny B. Raymond for putting your thoughts on paper for reflection. How do you explain CMT? Before you answer, read Kenny’s article and then, come up with your elevator speech and share it in the comments. I’d love to hear your ideas!

Kenny Raymond at Cycle 4 CMT, VT

We All Know the Drill

Exploring the Burgeoning Question: “What is CMT?”

by Kenneth Raymond

“Why are you wearing shin guards? You play soccer?”

“What’s wrong with your hands?”

“What’s wrong with your legs?”

Etc., Etc., Etc.

We all know the drill. The answer to the seemingly never-ending questions involves those three lovely letters, C-M-T. And then, the proverbial follow-up, whether it’s a random person in public or even a healthcare provider, requires us to dig deep in hopes of giving them a straight-to-the-point answer that’ll leave them knowing just enough about our disease to remember the name should they hear it again, all the while hoping we give them enough information to know it’s not a tooth disease and that it has nothing to do with sharks.

What is CMT?

“What is CMT?” I’m always trying to improve on how I answer this question. I can easily rattle off some quick factoids, such as CMT is a heterogeneous group of inheritable peripheral polyneuropathies whose name comes from the three doctors who first described it in 1886: Drs. Charcot, Marie, and Tooth; and this name, CMT, has since become an umbrella term that refers to many different inheritable sensory and/or motor neuropathies. Quick and to the point, right? This doesn’t say much about what the disease is though.

Medically, CMT is a genetically caused neuromuscular disease—neuro because peripheral nerve, muscular because the disease in the peripheral nerves causes symptoms in muscles. Genetically caused because each subtype is caused by a mutation in any one of many different genes.

Medically, CMT is an inheritable multisystem neuromuscular peripheral polyneuropathy. Inheritable because each of the genetic mutations that cause CMT are inheritable. Peripheral because CMT is a disease of the peripheral nerves. Polyneuropathy because CMT affects more than one peripheral nerve at a time (poly), as opposed to only one peripheral nerve (mononeuropathy). Neuropathy because peripheral nerve disease. Then, multisystem because CMT can affect hearing, vision, breathing, genitourinary, and much more, in addition to feet/legs/hands.

Statistically, CMT is the most commonly inherited neuromuscular disease nobody has ever heard of. This one is a weird dichotomy unto itself. CMT is a rare disease by every statistical and modeling measure. At the same time, when it comes to inheritable neuromuscular diseases, in totality, CMT is the most commonly inherited. In this context, common and rare can peacefully coexist even if it seems like they shouldn’t.

These above are just a select few examples of how CMT can be described. All of these descriptions are fine and dandy, but not only are these difficult to remember, firing off any of them to Jane Q. Public tends to render confusion about a disease they’ve never heard of. Is there a viable solution—a grand unifying answer, so to speak?

The Elevator Speech

I’m often asked to give my “45-second elevator speech” on what CMT is. My response typically hits several talking points and is usually along the lines of “CMT stands for Charcot-Marie-Tooth disease and is a rare inheritable neuromuscular peripheral neuropathy named after the three doctors who first described it more than 130 years ago. Although rare by definition, affecting only 1 in every 2,500 people, and totaling about 3 million people worldwide, CMT is the most commonly inherited peripheral nervous system disease. CMT causes the peripheral nerves to stop working correctly; and this leads to muscle weakness and atrophy, joint changes, difficulty with walking, and hand issues. Some who have CMT have breathing issues, hearing impairment, vision problems, bladder issues, and GI issues. The disease progressively worsens over one’s lifetime, there is currently no treatment, the disease can’t be cured, and it affects everybody very differently from one another.” Sometimes, people will ask follow-up questions. Other times, we part ways with only a, “whoa,” and maybe they’ll recognize the name the next time they hear it.

My “elevator speech” has been a go-to for many years, having evolved only slightly since my initial CMT diagnosis. It’s very easy for me to throw it out there anytime I’m asked. Does it say enough about what CMT is as a whole that it could be adopted by anybody who needs a quick go-to description? Until a week ago, I thought it did and I thought it could. What changed?

Bicyclists as a Catalyst

Kate Lair and Kenny Raymond

For the first time, I attended the Charcot-Marie-Tooth Association’s Cycle 4 CMT fundraising event held annually the last weekend of August in Charlotte, Vermont. This event is huge and people from all over the place, not just locals, attend and/or participate. I met and spoke with many CMTers. Some CMTers were cycling participants riding a treacherous 40-mile course through the western Vermont mountains even though there were shorter less-challenging routes. Some CMTers were there to participate in non-cycling activities. Some were event volunteers. Some were parents who do not have CMT, but their child does (or children do). Some were members of the CMTA leadership and social media teams.

Some of the CMTers at Cycle 4 CMT used wheelchairs, canes, walkers, etc. Some CMTers wore leg braces. Some CMTers had breathing issues. Some CMTers had severely twisted and deformed feet. Some CMTers had hearing loss. Some CMTers had speech impairment. Some CMTers had <fill in the blank>. I’m confident there were many hidden symptoms that went unmentioned and unnoticed. Without a doubt, it was the most diverse single-source representation of what CMT is that I have experienced in-person. As I spoke with CMTers and as I looked around, it became apparent that my go-to elevator speech is grossly inadequate and under-represents what CMT is.

It’s well established that CMT can and does affect everybody differently, and even within the same family. CMT can cause many things. Not everybody who has CMT will experience all symptoms of CMT. The mix of symptoms, the severity of individual symptoms, the rate of disease progression, and the overall disease severity can be quite different for every CMTer. What one CMTer experiences cannot be used to gauge or to predict what the disease will be for the next CMTer, regardless of subtype. It’s one thing for me to read it, and another for me to witness these concepts firsthand.

Is There a Solution for the Question?

What is CMT? The answer to that question, as it turns out, is quite different for every CMTer. My CMT is different than somebody else’s CMT. CMT, for me, looks quite different than does CMT for another. CMT, for me, is twisted, contorted, crooked feet that have led to tendons tearing requiring corrective reconstruction surgery of my right foot (and upcoming surgery for my left foot). CMT, for me, is weakened hands that easily cramp, a knee that used to dislocate before corrective surgery, bilateral hearing loss, unrelenting fatigue, chronic whole-body pain, progressively weakening upper leg muscles, spine changes (kyphoscoliosis), premature degenerative joint changes, speech/vocal difficulties, and for me, CMT is breathing issues. For another CMTer, CMT is wheelchair dependency, is an inability to hold and use a pen or pencil, is 24/7 mechanical ventilation via tracheostomy, and is total deafness. Yet, for another, CMT is none of these things, or a is a combination of these.

What is CMT? True to CMT, there isn’t a one-size-fits-all answer. The answer to the proverbial question is unique to the CMTer who is asked. The answer is even unique to the healthcare provider and to the scientific investigator. There are wrong answers to the question, such as a suggestion that CMT is an autoimmune disease. While CMT might share symptoms with some autoimmune diseases, such as Multiple Sclerosis (MS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) for example, CMT is decidedly not an autoimmune disease. Nonetheless, the answer to the burgeoning question is dependent on what CMT looks like for the one who’s giving the answer.

If you were to line up ten random CMTers—somebody who has CMT or somebody whose loved one has CMT, and ask each, “what is CMT?” each of the ten answers are likely going to be very different from one another. The differences are not born of inaccuracy or of a misunderstanding of their disease. The differences instead come from how differently CMT looks for each individual and from how each person individually experiences CMT.

What is CMT? For me, CMT is a cruel and often debilitating neuromuscular disease that looks very different from person-to-person. For me, what was once an easy answer to a complex question, or what was a complex answer to an easy question, has become exponentially more difficult to answer. As a CMTer, it’s easy to answer the question by simply describing what CMT looks like for me. As an advocate, however, I’ve learned my “45-second elevator speech,” while it gives a lot of information, is a disservice to the CMT community as a whole. The solution? I resolve to do better. I have to do better. I will do better.

About the Author

Kenneth Raymond was first diagnosed clinically with CMT1 in late 2002, at the age of 29. He was genetically confirmed to have CMT1A a year later. Kenneth has since devoted his life to studying, researching, and learning all things CMT, with an emphasis on the genetics of CMT as they relate to everyday CMTers. As a member of the Charcot-Marie-Tooth Association’s Advisory Board, Kenneth serves as a CMT genetics expert, a CMT-related respiratory impairment expert, and as a CMT advocate who is committed to raising CMT awareness through fact-based information rooted in the latest understandings of CMT. Kenneth has just published,

Charcot-Marie-Tooth Disease Gene and Subtype Discovery: The Complete Bibliography – Fall 2022 Release: A Desk Reference for the Everyday CMTer, the Practicing Clinician, and the CMT Researcher Paperback which is available on Amazon. Kenny also has an excellent website and blog to check out: expertsincmt.com

Kenneth Raymond is an administrator of several Facebook groups. He helps people with their CMT questions, especially those related to breathing and genetics. The CMTA is fortunate to have such a well-versed, well-educated Advisory Board member willing to work tirelessly for the CMTA community!

Seeing From the Heart

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I was flagged by Sister Helena in 5th grade; she sent me down the hallway to a dark room, where I sat until a woman instructed me, “Read the eye chart.” I started at the top row and slowly made my way down to the third row, “E, F, P, no, Ummm B, F? no, no E?” The lady told me to stop squinting, making the next letters even harder. “L, uh, T or, wait… E?” “That’s good enough,” she said. “Bring this letter home to your parents. I cringed. What had I done now? I was scared, but did not really know what I’d done wrong. I just want to hug that semi-blind 10-year-old with crow’s feet who’d been stumbling around in an unfocused, blurry world all her short life. Sad face. 😦

I will never forget the day I put on my first pair of glasses. I was not particularly fond of the frames my dad picked out. Old people have horrible taste. Seriously! I really wanted cool wired-framed “hippy glasses” just like John Lennon’s, but he picked out geeky blue plastic spectacles; I hated them. The lenses were so wide they hung over the thick plastic frame. “This sucks,” I thought. “I’m never going to wear these stupid glasses.” As ordered, I put them on, went outside, and was astonished. OMG! I could see the leaves high in a tree, the eyes and individual feathers of a bird, and people’s faces from across the street. It was a miracle!! Sister Helena… a miracle!

John Lennon Glasses

This childhood memory came waltzing along after a particularly illuminating personal coaching session with my executive life coach, Arda Ozdemir. With my thick-lensed spectacles, I still see pretty well, and the crow’s feet…..well, I still squint so they are even a bigger problem today. But it’s not about the glasses or the crow’s feet anymore.

Through Arda’s teachings, I realize I have been going about my day, blind to choice, possibility, and insight. My mind wears the pants in my psyche, leaving little room for emotion or self-reflection. I had become an automat living day to day without intent, feeling, or direction.

At first, I wondered what I had gotten myself into with these coaching sessions. The first couple of months were tough. I resisted. We talked about sandbags, anxiety, past events. We talked and talked and talked. Arda encouraged me to feel, but I told him I couldn’t. He asked me to close my eyes. I didn’t want to.

I started to trust. His method made sense. One day, I decided I was ready. I finally took that leap of faith and glimpsed within; I found my heart, bound by layer upon layer of imposed belief systems and rules, which were squeezing the life right out of me. I wanted to break free, but shedding my heart bandages was much too scary; I thought they protected me from past wounds. They did not. Personal growth begs openness, careful introspection, and exploration of deep-rooted fears and vulnerabilities.

Through my work with Arda, I’ve learned that change is not always easy or fast-moving, but it is possible and there is hope! Today, I’m more in tune, trusting my gut and paying careful attention to emotional triggers like anger, anxiety, sadness, and guilt. Before reacting, I try to remember to pause, breathe, work through the emotionally-charged situation, and explore the root cause of my reaction.

I have a secret! Did you know we all have the power to see reality in a multitude of different ways? Life is multi-dimensional. When you look at situations from diverse perspectives, it’s like looking through a prism…….every angle offers a unique view, some more appealing than others. I get more curious than angry and look for limiting life patterns when I’m triggered. Once identified, it’s possible to step out of the old ways and into the new by creating alternative pathways.

Looking through a prism

 My heart is healing. With Arda’s guidance, I’ve been able to peel off the strips of gauze constricting my life pulse. Today, I see not only with my eyes (and glasses), but also with my heart, which is fluttering with joy. Seeing with the heart opens new horizons, illuminating a path to a happier, more authentic life.

 Join me. Come along for the journey. Empower yourself with Arda’s teachings and lead a more fulfilling, meaningful life.  It works.

For more information on Rise 2 Realize, please visit: https://www.rise2realize.com/

Read Arda’s book: The Art of Becoming Unstuck – Available on Amazon

Take a workshop! Emotional Mastery
When: 5 Wednesdays in June; 6/1, 6/8, 6/15, 6/22, 6/29
6 – 7:30 pm Pacific
Where: Zoom, please register to receive the link
Program Fee: $375 ($75 per session)

Now Open for Sign-Ups:

Register now: https://www.rise2realize.com/emotional-mastery?utm_source=mailchimp&utm_medium=newsletter

5 transformative sessions to master your emotions and shift every aspect of your life

WEEK 1: Letting go of Conditioned Reactions
WEEK 2: Connecting with True Inner Power
WEEK 3: Creating Healthy Self-Boundaries
WEEK 4: Honoring Essential Heart Values
WEEK 5: Activating New Rewarding Dynamics

Life with CMT: When he left, I yelled, “Break a Leg!” So he did. 🤦‍♀️

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We’re back! Yohan yelled, sliding the door to the garage open. I noticed he was walking funny, not CMT funny, but like he had a stiff leg, a heavy foot, an injured limb? My perplexed look begged the question… What now?

He brushed off my concern, acting if I were being overly paranoid and concerned (like usual). “We had a great ride and of course, on the last mile, I was tired and I took a spill. I just sprained my ankle… and…well my elbow is banged up. Oh…. and sharp stick pierced the palm of my hand when I hit the ground, but overall, I’m fine. It’ll be better in a couple of days, he said, limping down the hallway.”

After a hot shower and short rest, I took a look at the damage. “My ankle is hardly swollen,” he insisted. I pointed out that the last time I had looked at his ankle, I could see a prominent ankle bone. Now it looked puffy and bloated, as if a small jelly fish had snuck in there and took up residence. So, the crutches came out of the closet, along with the sickening memories of past orthopedic surgeries, months and months of plaster casts, pain, boots, stinky feet, scars, blood and sores.

Our bald kitties ran across the hardwood floor to greet him, but one look at the clanking crutch made them hit the brakes and off they went sliding uncontrollably, face planting into the wall. Thank God the cats make us laugh!

Recognizing the all too familiar clunk, thud, clunk, thud of Yohan’s footsteps as he made his way across the room, I too wanted to hit my head against the wall, cursing CMT to eternity and back.

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Curious Cats

Yohan’s had so many trips, falls, ankle sprains and surgeries, he knew the drill. No, not RICE. We changed that acronym to RICED. Rest. Ice. Compression. Elevation. Drugs…can’t forget the Tylenol, Aleve, etc.

There wasn’t a lot of pain, but by Monday, Yohan intuitively knew he’d better get it checked out by his doctor. This was the foot on which he has had 2 reconstructive surgeries, with mediocre results.

When the films were placed on the viewing pane, there were a lot of aahs and oohs. His x-rays lit up the room like lights on Christmas tree. The techs were amazed at the hardware holding his foot together. But who was the jokester who took a pen and drew a fine line across the outer leg bone?

What’s in your toolbox?

Fractured Fibula

Diagnosis? A hairline fracture of the fibula requiring 2 months in a walking boot, 24/7, except to bathe. Ugh. Well, it could have been worse, but it still sucks.

Home we went, trying to wrap our heads around the news. The first order of business was to purchase an even-up foot riser to avoid throwing his opposing hip out of joint. He learned pretty quickly that the even-up foot risers are treacherous as they get caught on everything…..even air. The utmost caution is warranted. And if you don’t catch the edge of the foot riser on something, the cats will make sure you fall…..hard.

Walking on 2 CMT feet is tough. Put one of those in a boot and now balance on one very high-arched foot, whose toes curl in and up, and sprinkle in some ankle supination (outward turning ankle). Not for the faint of heart!

Supination

Typical CMT Foot

Next, he looked for additional boot liners. Seriously, they send you home with 1 boot with liner. The “hand wash only” liner smells like death after the foot is enclosed within its sweaty fabric for only 24 hours. Yohan ordered a second boot (the lux version of the same brand) so he could wash the liner every other day. Luckily, when a piece of the plastic from the first boot started digging into his heel, he had a cushy alternative.

The pain from the fracture was bearable, but he started to get a painful pressure sore on the bottom of his foot which thankfully abated when slipping his orthotic into the boot. The first several nights sleeping with the boot were tough, but gradually his body got used to the inconvenience.

This morning, he woke up with a smile!! He was celebrating his 2 weeks down, six weeks to go in a boot! He’s a glass half full kind of guy.

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Taking a step back, here are my reflections:

Yohan’s new electric mountain bike offered a rainbow of opportunity, where, for the first time in quite a long while, Yohan could just be one with his friends, his dad, and his people. He did some pretty amazing rides, going places and seeing things not seen before. And these days are not gone, just suspended for a short period of time. Not the end of the world, but a bummer all the same.

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What was and what will soon be.

I guess we all have ups and downs. Personally, I prefer the ups, but don’t we all? I believe the ups build experience and self-esteem and the downs build strength of character. And then there are all the in-betweens. Every emotional state –happiness, sadness, anxiety, fear, anger – is transient, so accepting the peaks and valleys with calm and acceptance makes each situation a little easier to handle.

Life’s highs and lows are an inevitable part of being alive, so I try to enjoy the highs, learn from the lows and experience everything else in between with an open heart. I know….easier said than done.

Yohan will get through this small setback. It will become a faint but unforgettable memory that will be part of his ongoing arsenal when dealing with upcoming challenges, setbacks and successes. He’ll get back on that bike…of this I’m sure. Why? Yohan is no stranger to adversity.

He’s not giving up or giving in. He’s found an activity he thoroughly enjoys, an activity which is exhilarating and fun, creating long-lasting memories of freedom and adventure. Also, he’s determined to cycle in the Cycle 4 CMT event with his Uncle Chris, his dad and maybe even me! The Cycle 4 CMT (in person or virtual) is so much more than a cycling event……It’s a celebration of strength, resilience and community.

Vincent and Yohan

Want to know more about the Cycle (and Walk!) 4 CMT? www.cycle4cmt.com

Join us in the spirit of uniting with like-minded people, to fund research to put a stop to CMT. There is no cure for CMT… yet. But there will be because we, our CMT warriors, friends, family, loved ones, are going to make it happen. Grateful, so grateful for our community. Xo

UK’s Peter NEVILLE: CMT Warrior

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By Peter Neville

How should I start? The beginning’s always a good place! Join me on my journey!

 Childhood Struggles

As a child, all the tell-tale signs were there; you know, the not being able to run fast, tripping over your own feet or hanging onto the old rope swing across the river. Yes, I got wet EVERYTIME!

I was also diagnosed with Perthes disease (a condition where the top of the thigh bone in the hip joint loses its blood supply, damaging the bone.) and treated accordingly, with 2 weeks in traction. My leg was set in a cast and weights were added daily in the hospital to pull the joint apart.

At about 17/18 years of age, I spoke with a GP (general practitioner) with regards to my hammered toes. The response was, “We wouldn’t do anything about them unless you couldn’t walk.” It occurred neither to him, nor to me anything more was wrong. 

Apprentice Chef

 I left the field of education at 19 after 3 years working as an apprentice chef in Jesus College, Cambridge University. I evolved within my time here from boy into man and was worked hard by my mentor (sous-chef), but he saw the potential I had. In my 3rd year, the college turned 500 years old and on my shift, we celebrated the new £1billion library; HRH Queen Elizabeth & Prince Philip visited for lunch….. The very lunch I had to cook!! Apparently, I was the youngest ever apprentice in 500 years and was being presented to the Royals in the afternoon.

Early Career

From here, I progressed in different establishments, one that Jamie Oliver’s dad, Trevor, owns. At 29, I was running my own catering business and had 3 different kitchens to run. Several years later, I was diagnosed with carpal tunnel syndrome I had surgery, which made little difference. The odd pot of soup or sauce would hit the floor or occasionally I’d trip. only to dump yet another plate in the bin.

Garden Center

I went back to work for another company and closed mine down. It was an easy little job in a busy garden center. It didn’t change me though and physically, nothing changed either. But gradually, it became apparent I had lost partial hearing. We worked around it for a few months. I got hearing aids….Great! At least I could hear the birds again. Then came the wrist pain again, so back to the GP I went. “I’m sending you to see a neurologist,” he said, somewhat puzzled.

Charcot-Marie-What?????

I walk into the neurologist’s office and offered to shake hands. The next line from her totally threw me: “Can you remove your socks and shoes for me please?” A rather strange request for someone with wrist issues! Looking at my high arches, she pointed out my pes cavus feet. With this, she announced, “Mr. Neville, I’m sending you for a genetic blood test and I’ll see you in 3 months time. I believe you may have Charcot Marie Tooth disease (CMT).” At this point in time, I was 38 years old.

 In the UK, we’re fortunate to have our NHS or National Health Service for which we pay in a national insurance scheme on all earnings. If we have treatments, certain medicines or appointments, it’s all covered.

De Novo or New Mutation

Anyway, the results were in and verified. I’m a CMT 1A mutant, meaning I have the first known case of CMT in my family. I knew nothing about it, knew no one with CMT and was directed to speak with someone at Muscular Dystrophy, UK. Muscular Dystrophy UK has a fantastic advocacy service which is free and many CMTers who have trouble with grants, equipment, etc. MDAUK helps these people in a number of ways. They even helped me with a grant for my mobility scooter! 

Surgeries

Surgery wise, I’ve been quite lucky in that I’ve had toes 2,3 & 4 fused on the right foot. Both big toes have had Jones procedures ( fixing and screwing the big toe so it no longer bends and the tendon is removed to keep it from moving.) I’ve had both Achilles tendons lengthened and one ruptured Achilles tendon I still need to deal with. I’m awaiting surgery where a tendon from my shin will be moved to support my left Achilles.

Peer Support

The Charcot-Marie-Tooth Association (CMTA) was the first Facebook group I joined and decided the UK would benefit from a similar group, so I created the Facebook group – CMT Friends UK – England. We are now 5 years old, with over 1600+ members. I’ve had specialist training in peer support and I’m also about to take a course in adult safe guarding (a framework which safeguards employees from exploitation).

Today, I’m dedicated to helping others as they get diagnosed with Charcot-Marie-Tooth disease. I am able to empathize with their struggles in daily life with simple tasks. I believe we have to push ourselves daily because if we just sit back, CMT wins.  Over the last five years, cmtfriendsuk has made a difference in people’s lives.

I’ve had several people telling me that they no longer feel lost or lonely and have a safe place to rant, ask silly questions (they turn out to be vital) and most importantly of all, be understood. The first thing we say is, “Welcome aboard the CMT crazy train!” We have 1500+ members who have walked in your shoes and sung from the same song sheet.

I have a very close friend who I came across in CMTA Faebook pages around 5 years ago. Sophie was diagnosed with CMT 1A at a similar time as me and now we’re like brother & sister. We both reached out and found each other. Adam Miller is a good friend and admin on cmtfriendsuk. Adam often tells me that I saved him from the pit of destruction. We’re like brothers. 

In fact, I keep myself positive by engaging with many people across the UK with CMT and strengthen bonds with those who are in the shoes I wore 5 years ago. Peer support work is a fantastic opportunity to work with people who are in need of help, a shoulder or a virtual hug. I’ve found that by helping others, it then in turn helps me as I stay focused. 

For newcomers to the group, the most vital information is: “You are not alone anymore!” There are others out there. The best thing to come from CMT? The CMT Warriors! 

Test Subject

On occasion, I’ll be contacted by the local hospitals to be a live model for training purposes of new neurological doctors in training. Each appointment I attend, I’m armed with CMT literature for both patients and medical staff.

About Me

I’ll be 44 in August. I’ve had 7 operations and more to come. I try to live as normal a life as I can with CMT. I go fishing in my spare time and love the great outdoors and fishing (I caught the biggest known fish from the nearby lake, (27lb 4oz) . Last year, my stepson Danny jumped out of an airplane from 10,000ft and raised £520 doing so.   

I also love birds and taking different pictures or videos. 

I live with my partner Tracie and we share our anniversary on April 26, 2021 ( 8 years together). Tracie is my rock, soul mate and love of my life. I have 3 children: a 21-year-old son with mild CMT1A, my princess daughter, 17, who also has CMT 1A and my youngest is 9 with no signs yet. Although they live on the opposite side of England, we often facetime with them. 

My moto in life is a simple one. If I can make one person smile each day or feel better about themselves, then I’m winning in life. 

If anyone wishes to follow me on Instagram please feel free to do so:

            #the_cmt_warrior

I chose the name the_cmt_warrior as felt it fitting for myself as I battle in many ways against CMT and often refer to it as a realm within which we live. We all battle for the long run and a cure for the future to come but until then, we must fight.

One thing that stands out that I did achieve was turning the town purple for purple Tuesday. Attached is a video of me on UK TV about this. Enjoy!

CMT – What are your thoughts? Got a story, suggestions, wisdom to share? I’d love to get to know you and possibly share your story. Write to me at:

elizabetho@outlook.com

Old Man’s Journey with CMT

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By Jeff Dols

My name is Jeff Dols. I am 71 years old and I have Charcot-Marie-Tooth disease. I don’t mean for that to sound like an AA meeting, but it’s just a few basic facts. While it’s not my intent to preach at anyone, a little preaching may be involved.

Some background:

I was diagnosed in 1964 at age 14. The clumsiness, sprained ankles, strange walking gait, hunched shoulders, and spinal curvature were all there but not connected. It was a broken hip from a fall to finally lead my parents to try to find out what was going on. That evolved into a day at Stanford University Hospital Clinics where I sat in an exam/conference room for 5 hours in a thin cotton gown as 5 teams of doctors poked, pricked, measured, prodded, tuning forked, zapped and generally explored. At the end of the day, I was excused and my parents were told I had Charcot-Marie-Tooth disease. I was told a few weeks later, but there were no details except that the disease was inherited, degenerative and had no treatment.

My mother was diagnosed too, but only after a lifetime of being treated as a Polio patient.

At age 16, I looked CMT up in a Medical Dictionary. It said, “a progressive, neuromuscular disorder, occasionally fatal.” So far, the fatal part has proven to be wrong, like so many things about CMT in the early years.

I have been lucky in that my disease is fairly mild. I had a mostly normal childhood and did the things most kids did, just not very well or as fast. There were things I could not physically do and things I was not allowed to do. I was just “a bit off”.

My diagnosis in 1964 gave me the starting point for answers to the question of what was going on with me. I learned I was never going to make a living with my body, so the NFL was out. I figured I better get an education to make a living. My mind is the one part of me CMT has never touched.  While some may  disagree, this is my letter, my life and so my reality.

This letter is not a complaint about my life or CMT. I went on to college, had a 40 plus year career in Sales and Marketing that took me all over the county and around the world. I met all types of people and experienced many different cultures. I would not change any of it. I worked hard, had a good time (mostly), and learned a great deal about myself along the way. CMT taught me how to deal with people and made my career choice ideal.

Now to the point, this letter is about the lessons I learned in 55 years of dealing with CMT.

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Jeff in his workshop.

Lessons like,

  • I don’t use CMT as an excuse to get out of things. It’s dishonest and an abuse of those around you.
  • I learned to work around CMT issues because it was the only way I could live my life. Early on, when no one had answers, you had to be creative and make it up as you went along. That ability is key in dealing with CMT.
  • I am not hesitant to ask for help when I need it, but I don’t let people volunteer to help when they think I need it.
  • If I can do something, I will do it, no matter how long it takes. Eventually, CMT may tell you to go find a different way but CMT has probably been telling us that for years.
  • When people stare at the way I walk or at my leg braces or how my hands cramp up at the worst times, I make a joke about it or ask if they are having a bad day too. Not in a confrontational way, but with a smile and a genuine desire to help put both of us at ease and to remove the barrier CMT can be, especially with kids.
  • Treat your doctors with respect, the same respect you show your plumber. You hire either one because they have an expertise you don’t. Treat both with respect until a time comes when respect is not mutually viewed as required. Then tell them how you see things and realize it may be time to find a new plumber.

I am 71 years old now and I still manage an independent life. It’s a more limited life than 20 or 30 years ago but whose isn’t. I make it a point to always look for tools and tricks that make life just a bit easier.

Julie and Jeff in the kitchen!

By tools and tricks I mean:

  • A button hook to buttoning my shirts and pants.
  • A small hook I keep on my key chain for those time when I can’t manage to pull my zipper up. It’s embarrassing to walk into a public restroom with your shirt tucked in and come out with it untucked. Can be a bit drafty too.
  • A sock puller aid to get my socks on and off.
  • My AFO’s allow me walk in a mostly straight line. And I do walk, three to four times week, with my special walking stick to help keep me going in one direction at a time.
  • My AFO’s are great shoehorns too.
  • My Velcro strap shoes save me time, frustration and limits the use of bad words that come out with trying to tie shoelaces.
  • I drop things all the time and to pick them up, I keep BBQ tongs handy. My wife calls them my “Geezer Tweezers”. I have 4 pairs scattered around the house and garage.
  • Soft handled knives and utensils make it possible to safely grip a knife so I can still cook. Yes, I can cook. Soft handled flatware is in the future though.
  • My Kindle means I can read most any book I want without the struggle of turning actual pages. When you spend so much time trying to turn a page, you tend to forget what you just read. Reminder, I’m 71.
  • I love my glass of wine and I found a cork puller I can use. Because of balance issues, I limit it to just one glass and only with dinner. I really miss that second glass though.
  • I still drive. Thank God for all the safety features cars have now. They keep innocent people safe.
  • I type 22 words a minute with 7 errors. Voice to text software is in the very near future.
  • An often-used tool of mine is a large master closet with no exterior walls. On bad days, when things really get to me, it’s where I go to shut myself in and rail at the gods and yell at the top of my lungs. Never mind what words I may use; the neighbors can’t hear me and why would I care anyway.
Jeff and Julie (His secret weapon).

But even with all the helps and the aids, the secret weapon that makes my life work is my wife, Julie. We have been married for 30 years. She has seen the best and the worst of me and she is still here. She knows what may be coming and she is still here.

When I am being an ass, she points out that I am being an ass, not always in the most tactful manner but she has rights and I tend to be “insensitive” on occasion. Remember the closet.

She laughs at me on a regular basis, even when I can’t see the humor. Example, in a furniture store, I got my AFO caught under a piece of furniture and no matter how hard I tried, I could not get it free. Julie laughed so hard I though she going to pass out.

When I do something especially stupid, she will yell, “Jesus Jeff”. She has yelled it so often and so loudly I think the neighbors wonder if I am some sort of demented deity.

Julie always has my back and will help when asked, even when she doesn’t think I deserve it.

Everyone needs a Julie in their life. If you have CMT, the need is greater.

So, the advice I would give kids and families dealing with CMT based on my 71 years of dealing with it:

  • CMT is going to win most battles. The trick is to make sure you lose on your terms. Don’t just accept, fight back and look for workarounds.
  • CMT affects many aspects of our lives, but it will not define who you are unless you let it.
  • As much as possible, don’t let CMT limit or constrain your life.
  • Don’t be afraid to ask for help, but always look to yourself first.
  • I keep physically active and exercise regularly. CMT will rob your physical abilities so do all you can to keep the strength and muscle tone you have.
  • Ask questions of your doctors and care givers. If you don’t understand the answers, ask again. Remember, you’re the one paying the bills and, in the end, they’re all just better educated plumbers.
  • Nurture friendships and make sure they feel free to call you an ass when you need it. If nothing else, it starts a conversation.
  • On bad days, don’t be an idiot and bring everyone around you down. You may have CMT, but the world does not revolve around you. Remember the closet.
  • On the good days, share it with the people who make the days good. They should share the good too.

A life with CMT is a life with lots of twists and turns, roadblocks and cliffs. Deal with them as best you can but always remember, each new issue is a shift to your new reality. Use the tools you have, adapt, and keep moving.

A life well lived is an adventure. If you have CMT, it can be a bit more adventurous but that just means the rewards are greater and the memories more impactful. And when you get older (and you will) and look back on your life, don’t just look back, but turn around, look forward and go see what’s next. The adventure ends only when you allow it to.

Here’s to cures and treatments to come so today’s CMT kids will be the last generation to be challenged by CMT.

Thanks so much to Jeff for his CMT story. It’s full of life experience, humor and common sense strategies. I feel grateful to have been given the opportunity to share his story with the CMT community. There is something for everyone, so enjoy!!

Do you have a CMT story? Would you like to share it? If so, write me: elizabetho@outlook.com I’d love to hear from you!

My Uncle Chris is Phenomenal

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My son Yohan was diagnosed with CMT at 7 years old. We have no prior history of CMT in our families. Yohan has CMT due to a new spontaneous genetic mutation. He’s the first in our family to have CMT. Though Yohan’s CMT has thrown roadblocks and presented challenges in his life, it’s also made Yohan resilient, empathic, loving and kind.

A huge thank you to all our friends and family who have supported Yohan throughout the years. My husband, Gilles has always been so good at finding ways to spend quality time with Yohan, engaging him in so many activities: camping, horse riding, kayaking, and now, mountain biking. Yohan’s Uncle Chris has also had a profound influence on Yohan throughout his lifetime. Here is a chapter in their story.

Chris flew in to Claremont, CA to attend my Grad School Graduation. It was a total surprise!!!

Yohan’s CMT Story – Uncle Chris

By Yohan Bouchard

VT summers: me and Uncle Chris

Since I was 4 months old, every summer (and a few below-zero Christmas holidays) were spent visiting my mother’s side of the family on the east coast. Vacations in Vermont were a blast – often the highlight of my year. I have such fond childhood memories of our adventures, which included spending time with my grandparents, aunts, uncles, cousins and longtime friends.

Yohan, cousin Warren, my mom, Kevin, James, my grandmother, Uncle Chris, Aunt Mia and cousin Lila.

In particular, I spent a lot of time with my Uncle Chris; we’d go fishing, hiking, and swimming. In winter, he’d also take me skiing and snowboarding. But, as my CMT progressed, it was more and more difficult for me to keep up. I realized I was participating less and less in those outdoors activities, which we both enjoyed so much.

Snowboarding in VT with my dad and Uncle Chris.

Throughout the years, Chris and I had grown very close; he was always there for me regardless of my limitations. He knew my muscles were getting progressively weaker and noticed I was becoming more limited in my physical capacities. It was hard for both of us to embrace the effects of CMT, but we always managed to find alternative activities, like fishing, swimming and just some plain ol’ goofing around.

Goofin’ around with Uncle Chris and Warren

When Chris first brought up the idea of organizing a CMT fundraising event centered on cycling, I was impressed by his drive to actively raise money for a CMT cure. Witnessing his passion first hand, I too got excited by his vision which was to launch both an in-person and virtual Cycle event to fund treatment-driven research.  I was convinced it would be a phenomenal successful, and I was not wrong. .

Over the last eight years, the Cycle 4 CMT has shown me just how far my uncle, and all my family and friends everywhere are willing to go to support me and so many others struggling with my CMT.

A surprise visit to the 1st Annual Cycle 4 CMT event

After the second or third annual event, I decided to face my fears and try to ride a bike again. My childhood adventures of being scared and unbalanced came back to haunt me, but I persevered. I wanted to show my Uncle Chris how much his effort, time and love meant to me. I biked around my college campus a bit, but that was the extent of my efforts.

Last year, with my dad’s encouragement and help, I gained confidence while I peddled on streets and swerved around people; I got back in the saddle. I was determined to actually ride alongside Chris and my friends on one of the Cycle 4 CMT routes. Of course, COVID had other plans, but it did not stop me. I did cycle in the Virtual Cycle (and Walk!) 4 CMT event with my dad and a group of friends over the Golden Gate Bridge in San Francisco. It was extremely fulfilling to do the actual ride with my dad and peers instead of sitting on the sidelines. My new electric bike was a game-changer!

Me and my dad, Gilles. We don’t go around obstacles, we face them straight on!!

I’m so pumped to go to Vermont this year and finally ride with my Uncle Chris in the 8th Annual Cycle 4 CMT. I will realize this dream as I want to show Uncle Chris how all his work has inspired me to face my fears and overcome them. I am extremely fortunate to have a supportive, loving family and an Uncle who is willing to go the extra mile.

Want to join us? Go to: www.cycle4cmt.com

Registration opens March 15, 2021. We are having both an in-person event in Charlotte, VT, on Sunday, August 29 and a virtual even from March 15-August 31, 2021, an anyone, anytime, anywhere can participate!!

Active Living with CMT: Exploring the Health Benefits of Urban Living for People with CMT

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By Mike Driedger

As someone living with CMT, I’ve found that living in a city — in my case, Toronto — has made living a healthy and active lifestyle easy.

Of course, urban living might not work for you. But I’d like to share with you how I owe much of my health, mobility, and happiness to living in a walkable and cycleable community.

To start, let me introduce myself. My name’s Mike. I’m a 39-year-old male living in Toronto with my wife, and I have CMTX. While I haven’t begun using AFOs yet, my CMT has progressed to the point that I do regularly walk with a cane for stability — like many of you, I’m a wobbly guy who’s prone to falling down.

I live just outside of Toronto’s downtown core in a 25-storey apartment building. I originally moved in because it had both a swimming pool and a gym, which has made daily exercise, especially in our harsh Canadian winter, so much easier — all I have to do is go downstairs! Even at the end of a long day, having the pool and gym only a few floors away makes it hard to be lazy. On average, I swim about two km (1.2 miles) each week. And now, after 12 years of living with these amenities, I can’t imagine living without them.

Mike at the pool!

Toronto is a dense metropolis with many walkable neighborhoods. Most of central Toronto has a high walk score, which means most amenities — such as grocery stores, pharmacies, community centers, restaurants, and bars — are within walking distance to residential areas. So, I walk a lot. I walk for groceries with a wheeled “drag bag.” I walk to run errands, go out to restaurants, and to meet up with friends and family.

Using a “drag bag” in town.

For distances a little farther away, I walk to public transit stops, take a bus, subway, or streetcar, and then walk the rest of the trip. As I already mentioned, I walk with a cane most of the time, but occasionally switch to walking poles in the winter.

When I’m not walking, I’m biking. I bicycle to work most of the year, except during the iciest and snowiest months of winter. During those months I drive my car — yes, I have a car, but only drive about 6,500 km (4,000 miles) a year.

My office is about 8 km (or 5 miles) from home, so it’s a reasonable bike ride both ways. I’m also lucky that my employer values active transportation and has shower facilities for employees. This seems to be something that more and more urban-based employers are providing, and it’s definitely appreciated.

So I’ve managed to set myself up with an active lifestyle where I can swim, walk, and bike regularly: urban living has allowed me to stay physically active on a regular basis. In fact, many urban centres like Toronto actually make it harder and more expensive to drive than to walk, cycle, or take public transit. By default, I’m active and getting physical exercise just going about my daily life. Whether heading to work, shopping for groceries, running errands, visiting friends, or heading out on the town, I’m using my own body to get there. Plus, having a gym and pool in my building means I don’t have any excuses, even when I’m home.

Luckily for me, my wife loves being active and exercising too, and maybe even more than I do — she often pushes me to keep going. We often joke that our hobby is exercise.

As someone with CMT, I find that this works really well to ensure I’m fit and staying active. Not only do my daily routines and life keep me mobile, but I actually enjoy swimming, cycling, and going on long walks in my spare time. Urban living has made all of this easy.

I’ve found that the best path for physical health is about making exercise as easy and as part of your daily routine as you can. Look, even if big-city living won’t work for you, maybe it would benefit someone you know. If you’re young and still trying to figure out where you want to live for school or work, at least consider the simple health benefits of living in a more accessible and walkable city or town. As a person with CMT, you don’t need to “find time” to be active — it’ll just happen.

________________________________________________________________________________________________

Mike Driedger is the Co-Leader of the CMTA Toronto, Canada Branch. He’s also on the CMTActive Facebook team, moderating the group and encouraging members to be active in their daily lives. Mike himself is passionate about keeping active and a proponent of active transportation. He cycles to get to work and walks, swims and cycles in his free time. He’s a Program Director focused on work engaging people and businesses on issues related to health and the environment. Mike has a BA in environmental studies with a sociology stream and a graduate certificate in environmental management and assessment. Mike lives in Toronto with his wife, Adrienne, and their mischievous cat, Diego. He loves to explore the sights, sounds and tastes within his own city, as well as in destinations around the world.

Mike participated in the VIRTUAL Cycle 4 CMT, riding 1,000 km throughout the month of August, raising an amazing $3,800 for CMTA research – STAR or Strategy to Accelerate Research. If you’d like to donate to Mike’s efforts, go to: https://cmta.akaraisin.com/ui/cycle/participant/6048747

If you’d like to contact Mike, his email is: mdriedger@gmail.com

Never Say Never: How an Ebike Rocked Our World

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The training wheels came off my own bike so long ago; I’d forgotten the emotions, challenges and vulnerable feelings of trying to balance on two wheels for a few pedal strokes without crashing to the ground. In fact, I had always taken riding a bike for granted until my 5 year-old son, Yohan, attempted to ride his bike without stabilizers. The experience was stressful, defeating and frustrating.

“This is not fun. Not fun at all. I’m done.” he said as he walked slowly back in the house, head down. “I keep tipping over. I can’t get my feet on the pedals. I’m going to die out there. Biking’s dangerous and stupid!!” When Yohan sets his mind to something, there is no going back. He gave up biking on the spot – forever?

Fast forward 15 years to the excitement of leaving home for University. Yohan was thrilled to have been accepted to Pitzer, a small college in southern California, expanding over 35 acres of relatively flat land. At 20 years old, Yohan’s arches had become extremely high, his toes curled and his ankles, unstable. Chronic burning pain and fatigue were also issues to taken into consideration. Pitzer did not offer transportation between classes, so we discussed alternative solutions.

How about trying a moped, a scooter, a golf cart, or a Segway (I was half joking about the Segway)?  Every single idea was shot down in a blink of an eye, until Yohan’s dad mentioned a bike. There was a pause before Yohan said, “Lemme think about it.”

Segway I2 SE – Blue Ridge Electric Fun
Segway? No Way!

The following week, we were looking for a bike with a low crossbar. “Oh, you are looking for a girl’s bike?” joked the salesperson. No one laughed. “Idiotic comment.” I muttered under my breath. “No, we are looking for a low top tube for people who have a hard time swinging their leg over that bar.”

At about the same time we purchased Yohan’s bike, my brother, Anthony, happened to be in town. He spent an hour with Yohan in our long driveway, providing the guidance, confidence and tips Yohan needed to succeed. With a little practice, Yohan overcame a lot of his fears, stayed upright and felt comfortable enough to bring the bike to campus, where he used it a handful of times to get back and forth to class.

Look Mom! No training wheels!

Riding a bike on campus comes with its own challenges, including other student bikers doing wheelies, skateboarders weaving in and out of people, inattentive students tuned into their cellphones, etc. At graduation, we packed up all his belongings, minus the bike, which was in a state of complete disrepair, still attached to a bike rack, with a kryptonite lock whose combination had been long forgotten.

Just when we thought biking would never be in Yohan’s future, we rented a Scott e-bike during a trip to Tahoe….and overnight, a cyclist was born. He was able to go farther, faster, and for the first time in his life, could accompany his friends and his dad on some longer rides. It has a low step-through design (aka a girl’s bike), and in pedal-assist mode, you still get a great work out and have backup power when needed.

Photo Credit: Yohan’s friend – the one and only, Vincent Billard

So, this year, for the VIRTUAL 7th Annual Cycle (and Walk!) 4 CMT, Yohan rode his e-bike across the Golden Gate Bridge, up the Marin Headlands, and back for a 20 mile ride with 2200 feet of climbing. Never would we have thought that the child who could not ride a bike due to lack of balance, sensation, and confidence would one day ride over the Golden Gate Bridge, maneuvering around pedestrians, cyclists, kids, dogs, etc… There were setbacks, spills, road rash, fatigue, but with the support of friends, family and our CMT community, he conquered. The smile says it all….and more! Thanks to all our supporters and cheerleaders – You are CMT Champions!

To learn more about the Cycle (and Walk!) 4 CMT, click here: www.cycle4cmt.com

The smile says it all!

Honoring Vicki Pollyea: A Woman of Great Strength, Courage and Conviction

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Vicki Pollyea – October 27, 1956 – September 15, 2019

When I first met Vicki over 12 years ago, she was the leader for the Tampa CMTA/MDA branch, the largest CMT group in the country. We hit it off immediately, and I knew she’d be a forever friend, and I was right. Over the years, Vicki has played a variety of different roles at the CMTA, all in which she’s poured her heart and soul. When I wrote this article, Vicki was recuperating from radiation therapy for recurrent lung cancer, and from her hospital bed, she continued to moderate the CMTA’s Facebook Group, giving fact-based answers and helping other find resources, comfort and support.  

With Bethany Meloche in California

Born into a family with CMT1A, Vicki grew up in Tampa Bay, Florida. Her CMT prevented her from riding a bike and running, but she could swim and catch needlefish to sell for bait to tarpon fishermen.

After undergoing a lot of physical therapy in her youth, Vicki decided to get a degree in occupational therapy from the University of Florida. She worked as a pediatric occupational therapist until her  CMT forced her to change her life path. Undeterred by this setback, and soon on full disability, Vicki became a CMTA branch leader and neighborhood activist. She was part of a former Mayor’s Neighborhood Task Force and helped draft Tampa Bay’s tree-protection code. Vicki was also president and one of the founders of Bayshore Gardens Neighborhood Association, where she and her husband, Archie Giannella, live in a 1921 bungalow they restored. Her hobby was fishing, a passion she and Archie shared.

Archie and Vicki

Since 1985, Vicki had more than two dozen orthopedic operations. Over time she became more homebound, but turned to the phone and the computer on CMT chat rooms. Soon thereafter, she stepped up as a CMTA Branch Leader.  Her mantra?  Vicki often said, “I cannot control the things that happen in life, but I can control my attitude about the things that happen.”

True to her word, Vicki valiantly battled lung cancer, and the most recent occurrence was found to be inoperable. After 6 weeks of intensive radiation therapy, pneumonia set in, delaying her progress. Yet, whenever she had a chance or a little extra energy, she continued to spread CMT awareness and moderate the CMTA Facebook group, sharing her lifelong experience and knowledge of CMT. 

In addition to her sister, Vicki has two cousins who live in New Zealand and also have CMT. She knows that all the research currently underway will make a difference in their lives. Vicki reflected, “I don’t know how much longer I’ll live, but Archie will be by my side. It teaches you to live in the moment, to tell the people around you that you love them. You never know what will happen tomorrow.”

As a person dealing with Charcot-Marie-Tooth condition, she was always 100% committed to the community, supporting the newly diagnosed, helping find resources for those coping with CMT as well as increasing awareness of this condition. These have been her most meaningful life goals. Vicki believes that increasing Awareness + Raise Research Funds = Treatment/Cure. And I could not agree more.

CMTA Branch Leader Meeting


Vicki Pollyea, your selfless volunteerism has made a tremendous difference in the world of CMT and beyond. You’ve touched more people than ever you could imagine and we are eternally grateful for your relentless drive and motivation to make positive change in the here and now.

On behalf of the CMTA board, staff and community, I want you to know that you are deeply appreciated and truly missed. Your spirit lives on and there is not a day that passes that I do not think of you!

True to form, here is one of Vicki’s favorite quotes from Cornel West: “I’m a militant for tenderness. Justice is what love looks like in public, just like tenderness is what it looks like in private. Love is a steadfast commitment to the well-being of others.”

As a post script, Jeana Sweeney and I were invited to speak at Vicki’s Cerebration of Life. The room was overfilled with people who wanted to honor Vicki. Vicki was so loved and admired by family, friends, local community advocates and CMTA supporters. It was a beautiful ceremony, filled with tears, laughter, and reminiscence.

We’ve lost a CMT warrior extraordinaire, but in her name we will fight on to cure CMT, which was a big part of her life’s work. She will always be remembered as a CMTA advocate, fighter and visionary and her spirit and energy will live on.

Therm-a-Rest Founder Offers Unforgettable Gifts to CMT Community

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James Lea

It was in the winter of 2012 that we met the elderly man sitting in a bulky hospital-style wheelchair, covered from shoulder to toe with a plush blanket. Jeana Sweeney and I had flown to Seattle, WA to speak at a local CMTA branch meeting. We had just begun the presentation when a bright and lively young woman entered, pushing an old man to the front of a fully-packed room.

He put “Jim” on his nametag. Jim listened intently to our talk, not missing a beat. He even asked a few questions with his quivering, shallow voice, which betrayed an inability to completely catch his breath while speaking. He must have been around 90 years old, 100 even! And, he was obviously affected by decades of living in a body with CMT, but he forged onward.

At the end of the meeting, once  Jeana had finished her pep talk about CMT awareness and fundraising, a few people hung out to ask questions, socialize and munch on home-baked sweets!  While I was speaking to the branch leader, stuffing brownies into my mouth, I spied Jeana who was making a most definite beeline for Jim and his caretaker. Hmmmmmmmmmm…

45 minutes had passed and I was more than ready to hit the road and make our way back to the airport. Most people had left, but Jeana was still chatting away with Jim and his caretaker. As I was packing up my stuff, I overheard Jeana ask, “Have you ever thought about getting involved or giving to the CMTA?”

“OMG, really?” I thought as I struggled with the zipper on the projector pouch. “Really? Tell me she didn’t. Did she just ask that elderly man we do not even know for money? Seriously, we have to have some boundaries here. She’s great at fundraising and all, but taking advantage of the elderly is not right!” I made a mental note to talk to her as soon as we were out of earshot.

On the way back to the airport, I expressed my concern. Jeana just started laughing. “You only heard like one tiny part of our conversation, Elizabeth. And I was not taking advantage of anyone! I can’t believe you would even think that of me!” she added with a serious scowl.

Long story short, Jim or James Lea is known for his invention of the Therm-a-Rest mattress. If you do any outdoor activity or camping, you’ve probably heard of Therm-a-Rest! Throughout the conversation, he willingly mentioned his philanthropic activities and admitted that he wanted to help people with CMT. Having been diagnosed with CMT early on in his life, he wanted to give back to a cause close to his heart. But first, he had to do some homework.

thermarest

He asked Jeana if she would be willing to go back to Seattle and spend a couple of days with him to talk about the CMTA, its mission, and financials. More than anything, he wanted to get to know Jeana better, to understand her values, her work, and her purpose.

Jeana ended up spending 3 full days with James, from 9am-7pm  with James, who was still very busy with his various business ventures. Later, I called James and interviewed him. Here is the article I wrote for the CMTA Report:

James Lea is one of the original founders of Cascade Designs and the developer of Therm-a-Rest, the world’s first self-inflating camping mattress. Born in Tacoma, Washington, on October 22, 1920, this spritely nonagenarian shows few signs of slowing down any time soon. When asked what he does in his free time, Jim was quick to respond, “What free time? I am very busy!” When he is not working in his office, he tries to remain as active as possible. He enjoys being on the lake and working on boats, always trying to improve their function. Jim also put a lot of emphasis on taking care of himself by eating right and maintaining good lifestyle habits. Once in a while, he might even play his ukulele, which is increasingly difficult due to his CMT. Yes, Jim Lea has CMT, as did his siblings, father, and grandfather, who got around using two canes.

Jim was in his thirties when he first noticed signs of the disorder, “When I walked, it felt as though my socks were bunching up under my feet.” It was not until he was in his late 50s that neurologists from the University of Washington officially diagnosed him with Charcot-Marie-Tooth. As a successful engineer and businessman, Jim has managed his CMT over the years. “Truthfully, I just try to ignore it, work around my difficulties, go ahead with my day and do the best that I can, every day.”

 

Jim Lea “poses” for a picture. Later he admitted, “This picture was a hoax! I never rock climber in my life. Look at the shoes I am wearing!”

 

 

 

 

 

Forever inquisitive, Jim has also done quite a bit of research on CMT to better understand treatments, therapies, and current CMT research. Choosing to accept his CMT as an undeniable presence in his life, Jim never shied away from telling others about the heritable disorder passed on from generation to generation in his family. In fact, just last year at his 90th birthday party, he took it upon himself to spread awareness of CMT by passing out brochures and educating his guests about the disorder. How I admire James Lea and his positive, upbeat attitude! Despite the fact that CMT is affecting his breathing, his hands, his feet, and body, never once did I hear him complain or lament about his struggles. Moreover, encouraged by recent progress in the CMTA’s STAR initiative, he does hope that treatments are forthcoming for our younger generations.

His message to younger people with the disorder is to “stay strong, accept the condition, and find alternative ways to achieve your goals and dreams.” Not missing a beat, Jim also hopes that scientists will hurry up and find a way to create … another Jim Lea, at 65, who could do some of the many things he still wants to do in this lifetime! At 91 years old, Jim Lea is one of the most positive and upbeat souls I have ever had the opportunity to meet. His never-give-up attitude, inquisitive mind, and perseverance are most admirable, making him the legend and role-model he is today.

Jeana passed all his tests with flying colors, as did the CMTA.  Jeana and Jim created a true friendship which grew and blossomed right up until the day he passed on December 20, 2016. When talking on the phone was no longer possible due to hearing loss, Jeana sent him cards and letters, always making sure to include one of her daughter Rylee’s drawings.

Jeana Sweeney and her beloved Rylee.

James Lea gave a large part of his estate to the CMTA after his passing as he not only believed in the work of the CMTA but also in one of the Association’s most well-known, hardworking and genuinely caring CMT advocates – Jeana Sweeney. Jim will remain in our hearts forever, and his investments into the CMTA will help many for a very, very long time.

 

In Flora’s Memory – Just Say It! Again and Again and Again!

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“My high school years?” she shuddered. “After the doctors diagnosed me with polio at 13-years-old, they wanted to straighten my misshapen feet. So, for the next 5 summers in a row, my school vacations were spent either in the hospital or at home, immobilized, with heavy plaster casts weighing me down.”  With raspy, uneven breath, Flora described those dreadful Mississippi summers as muggy, sticky and hot – really hot. “Neither the hospital nor my home had air conditioning in those days, so I was pretty uncomfortable –  but I got through!”  she added with her usual determination.

 

I first spoke with Flora in 2003, when I was getting to know the CMTA group leaders throughout the country. She told me that after her orthopedic surgeon “straightened her out”, she had left her polio diagnosis behind and moved forward with her life. She went to college, married her husband of 52 years – Billy Joe Jones in 1960 and had three children. After the birth of her youngest child, Cindy, she decided to stay at home to be a mother, wife, and homemaker.

Flora and her husband, Billy

Over the years, her legs weakened and her hands slowly lost function. In 1982, at the age of 45, she was finally diagnosed with Charcot-Marie-Tooth disease or CMT at an MDA clinic. Okay. There was a name for her progressive symptoms, but she wondered what she was supposed to do with the name. She couldn’t just “Google It” because home computers had not made their debut in society.

 

Luckily, by word of mouth, she heard about a CMT conference in Toronto, hosted by CMT International. No way was she going to miss this opportunity to learn and gather more information about CMT. Upon arrival, she was stunned to meet others with similarly-looking feet and hands – 200 other individuals with “the walk” including 30 people who admitted to breathing difficulties, like herself. One of her favorite parts of the conference was educating CMT clinicians about her own CMT.

In 1993, she was elated to discover a CMTA support group in her area. With her passion for spreading awareness and teaching others about CMT, it was not long before Flora stepped up as the leader of the Brandon, Mississippi CMTA support group. In fact, she involved the entire family in her mission and many weekends were devoted to mailing educational information, calling new members and organizing CMTA meetings.

Flora and Jeana Sweeney at the CMTA Support Group

Due to severely atrophied leg muscles, she lost her ability to walk at the age of 58, but that did not make one bit of difference. She continued to lead her group enthusiastically, informing the members about the CMTA, its research, and resources.   Over the course of her lifetime, she touched innumerable lives, informed countless medical professionals and supported others who had a CMT diagnosis.

Toward the end of her life, she could barely use her hands, and her violent tremors made holding or sipping from a cup virtually impossible. Her paralyzed diaphragm made breathing harder and harder with each passing day and her weakened vocal cords affected her ability to talk. Yet, Flora did not let any of those worsening symptoms stop her from fulfilling her mission in a positive, cheerful and comforting way.

I just spoke to Flora a few months ago. She called to check in, to see how Yohan was doing after his foot surgeries. She told me he was always in her prayers. She admitted that her CMT was wreaking havoc on her body, but it would never, ever dampen her inner spirit. Even in her final months, she would not leave home without her brochures. She wanted to be ready to educate everyone and anyone who would listen to her about CMT. In a recent letter from Flora’s daughter, Cindy, she confided, “Even up to her last doctor’s appointment, she educated her doctors about CMT.” In February, Flora was given a new doctor, “a cute one!” she said with a wink. Super impressed that he really was interested in CMT, he  even explained how he could help her live a productive life despite her limitations.

Flora and her daughter, Cindy

Following in Flora’s footsteps, I try to spread CMT awareness wherever I go, even if Yohan rolls his eyes out of his head like he’s screaming loudly. If we all speak about this progressive disease to our doctors, nurses, family, and friends think how many people would recognize the name, the symptoms, and the signs. “It’s CMT.” I say. “Charcot-Marie-Tooth disease.” And when the person looks puzzled, which they usually do, I remind them of the acronym – CMT.  To make it stick, I joke that CMT does NOT stand for Country Music Television. And I might add, “ It’s the other CMT-the one that destroys nerves, causes muscles to weaken, and disables the young and old. It’s Charcot-Marie-Tooth disease and we desperately need a cure.” And a cure starts with awareness.

In memory of my friend Flora, who passed on April 1, 2018, at the age of 81 from CMT-related breathing complications, please help raise awareness of CMT. Think about it – even the most worthy causes won’t receive a dollar in donations if no one knows about them. Putting a face and a personal story on CMT may spur people into action, especially if they know their support will lead to a cure.

Flora, you are my inspiration to wake up every day and fight for a world without CMT. And now, I imagine you moving freely among the stars and dancing with angels. And I smile.  I may not have told you during our phone conversations, but I admire you and love you deeply. Your memory will never be forgotten.

To find out more about CMTA research, please visit:  https://www.cmtausa.org/breakthroughs-for-cmt/