My Family Understands the CMT Challenges I Face

Last week, I wore my ankle-foot orthoses (AFOs) while taking an evening stroll. I marveled at how much easier walking is with AFOs than without them. It was one of the highs of my week.

But I also had some lows, when what I call “CMT moments” happened. For example, I had an embarrassing moment when my strength failed me, and the result was that I ended up on the floor — along with a dropped container of blueberries.

I also found myself examining my hands for a few minutes. I was disappointed to realize that with each passing year, I can see the muscles in my hands atrophying and revealing the metacarpals beneath the skin of my hands. Sometimes I feel like my hands are little more than skin and bone, a symptom of Charcot-Marie-Tooth disease (CMT). More CMT moments.

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But at least I didn’t experience all of these CMT moments alone, as I had driven to Ohio from North Carolina to see my parents. While I always appreciate time with my family, I am particularly grateful during moments like these, because it’s good to have other CMTers like my father and sister around. Fellow CMTers can marvel with me in moments of joy and commiserate with me during the low periods.

Although I appreciate how in these past two years I have had more opportunities to connect digitally with other CMTers around the world — due to time spent indoors because of the pandemic — I still also find something special in meeting them face-to-face, when it’s safe to do so.

Being able to chat with my sister and vent about our progressing CMT symptoms has been a great help to me. And I hope it has been for her as well. I genuinely believe that fostering healthy relationships with others with whom we can discuss both our victories and our struggles when it comes to our bodies and our chronic conditions is beneficial.

It’s also something I discounted when I was younger. For much of my life, I didn’t know any CMTers outside my family. And even among my family, we didn’t talk about CMT much until recently.

As a child, I simply trusted the guidance of my parents. Recently, however, we’ve had more discussions about the subject. My trip last week reminded me of how important this type of dialogue is.

I hope that everyone in the CMT community has someone, whether it’s family members or friends, who help to facilitate a dialogue about this disease. No one should have to battle through the worst of what CMT brings on their own.

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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.