What I’ve learned about finding an exercise regimen with CMT

Addressing some of the ongoing challenges of staying active with a disability

Young Lee avatar

by Young Lee |

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Those of us with Charcot-Marie-Tooth disease (CMT) know that it takes things from us in profound ways. For example, it chips away at our balance and leads to muscle atrophy. Because CMT symptoms often manifest in unpredictable ways, we can’t effectively plan for our future. As a result, many of us face a shorter health span than our able-bodied peers.

This can lead to feelings of shame. Because a huge part of our society revolves around exercise, sports, and physical activity — arenas that often aren’t built with people with disabilities in mind — many of us feel isolated and ostracized, incapable of connecting to some of our friends in certain ways. Navigating this world with poor proprioception is challenging, making us feel as though we’re at odds with our own body.

Every “CMTer” needs to find individualized ways to address these concerns. For me, few things have helped as much as finding an exercise routine that resonates with me — one I find safe, sustainable, and fun.

No, exercise isn’t a magical panacea. However, I’m gaining an appreciation for the many CMT advocates who encourage us to find an activity that gets us moving.

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Adapting my exercise regimen to fit my needs

For a scientific perspective, I reached out to Katherine Forsey, PhD, the Charcot-Marie-Tooth Association’s chief research officer. In response, she cited academic studies that suggest exercise can potentially improve both strength and aerobic capacity, even in a body affected by CMT.

“In the current era of clinical trials, and with new treatments for CMT on the horizon, it’s more important than ever for people with CMT to be in the best possible shape, to keep as strong and mobile as we can, while we wait for approved treatments to become available,” Forsey wrote in an email.

That is why she often recommends that CMTers seek out a physiotherapist or other appropriate care providers to find exercise options that work for them.

Exercise has also helped me regain some sense of control over a body that seldom grants me opportunities to feel that way. Becoming a regular at my local gym has helped connect me, in a very small way, to a fitness world I once thought wasn’t built for someone like me. While that hasn’t prevented me from tripping, falling, or feeling CMT-related pain every now and then, getting stronger has made me more confident about moving through the world, which is now less exhausting and more comfortable.

I found an exercise regimen that works for me only a few years ago. It took time and energy, self-reflection, and putting myself in spaces where I felt awkward and new. However, I fully expect that I’ll eventually need to go through this process again. What works for me right now probably won’t work years down the road.

As I move through different chapters of life, my schedule will inevitably change as I take on or relinquish different responsibilities. My physical abilities will change with age and as my CMT symptoms progress or manifest in different ways. My interests will also change.

Truthfully, it worries me that my fitness habits might not be as resilient as I’d like to think. A few weeks ago, I reached out to Julie Stone, a personal trainer certified by the National Academy of Sports Medicine and a CMT advocate, to hear her thoughts on the matter.

Our conversations encouraged me, and Stone assured me that there is a lot of support out there for CMTers. At this point, she said, almost every CMT interest group has resources for fitness-related topics. She also reminded me that even as my abilities and mobility begin to wane, there are often ways to adapt the activities I’m already passionate about to fit my “new normal.”

She also impressed on me the importance of listening to my body and honoring it.

“Celebrate progress, celebrate keeping habits,” Stone said. “But also, when you can’t, celebrate listening to yourself.”


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

Comments

Shona avatar

Shona

Great insight. I have late onset CMT and so went from planning to run a marathon to struggling with stairs. I'm in Australia where there are fewer resources (they are growing, but still not to the extent that my regular physio knows anything about CMT) but I've found that Reformer Pilates three or more times a week, together with a functional strength class run by my physio once a week, keeps my joints oiled and the aches and pains away. I've also advanced from not wanting to walk my dog out of fear of both falling and also being looked at (I've been approached in shopping malls a few times by middle aged men demanding to know what's wrong with me and why I walk strangely), to not caring and just taking my time. It's been beneficial for both me and my dog. I think the key is, as you say, to not comparing to how you used to be able to do things but to adapt and change as new obstacles arise. And, as that physio said, listen to your body - I've learned the hard way that pushing through just results in a flare-up that knocks me off my feet for a week or more.

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Jillian Raewyn anderton avatar

Jillian Raewyn anderton

Thankyou Lee for your advice ❤️ congratulations on keeping positive 👏 I'm 63yrs only just got drop foot and need help walking.being positive and Appreciating life is very important. BE HAPPY MY FRIEND,

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Christine L Wodke avatar

Christine L Wodke

I have been exercising for a lont gime
8
I hve been exercising with CMT for some time. I ski, run, swim, bike, hike, and kayak. I would be happy to answer any questions you might have. You can contact me through my website or facebook page.
www.run4cmt

i

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April Agostinello avatar

April Agostinello

Thanks for your advice! I’m in Advance, N.C. and wish there was a way to meet you so I could officially say that I actually met another human being who not only knows about CMT but also has it and can understand what I go through on a daily basis. I feel so alone and sick & tired of having to educate people about what it is and how it affects my feet and has nothing to do with my teeth and I am not drunk when I’m stumbling around. I sometimes even have to print things out for my own doctors who have never heard of it in hopes that they will provide better care or be willing to choose a different medication from the ones known to adversely affect us. I really appreciate you spreading the word about the condition as much as I do the tips you’re providing us with! Best of luck to you and anyone else who suffers from it!

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Janice avatar

Janice

Thank you for the insight Young. We miss you at our meetings. Congratulations on your new job.

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Millie Walker avatar

Millie Walker

I am 83 years old and have been suffering from cmt since age 65. I can't drive anymore so rely on my husband. I have an 80 year old brother who also has it. I use a cane and walker and sometimes an electric wheelchair to get around. I have not been formally diagnosed, but. I think this is what I have. Is there anyone out there on gabapentin (sp) and does it help at all?

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