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

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.