Evolving, Not Ending: My Journey with Charcot-Marie-Tooth Disease

I have CMT—Charcot-Marie-Tooth disease. And to be completely honest, I’m not a fan.

Looking back, the signs were always there, quiet and easy to dismiss. My whole life was filled with subtle hints: flat feet, rolling my ankles constantly, and as the years went on, more sprains than I could count. But the real shift happened about six months after my loving husband, Keith, passed away. In the midst of grief, my body started sending signals I couldn't ignore.

It started with a persistent numbness in my left big toe. Then came wrist pain that sent me to the doctor to check for carpal tunnel. During the exam, the doctor thought the nerve conduction machine was broken—my EMG showed a mere 20% reactivity when it should have been at 100%. That sent me straight to a neurologist for a full-body EMG and genetic testing (which is very painful). The results confirmed what already ran deep in my family tree: like my older sister, my mom, Grandma, several aunts, and an uncle, I had CMT.

In the two years since my diagnosis, the progression has been noticeable. Neuropathy has settled into all the toes on both feet. Stairs have become a major struggle—going up and down takes serious effort, though I can still manage when I have to. My stamina for walking long distances has plummeted; anything over a mile is a real battle. When I took my son to the mall a few times this summer, I found myself having to consciously concentrate on just swinging one leg forward, step by arduous step, leaving me with severe lower back pain by the end of the trip.

Finding Tools, Not Excuses

It would be easy to let these physical limits shrink my world, but I’ve decided to adapt instead. I recently bought a recumbent trike, and it has been a total game-changer. I’ve been riding several miles a few days a week. Oddly enough, while I’m pedaling, my legs feel as strong as ever; the fatigue only hits once I stand back up. To keep my independence intact, I also just ordered a "cool" mobility scooter. My goal isn't to avoid going places—it's to equip myself with the right tools so I can keep going everywhere I want to go.

Life isn't over. It's just evolving. I refuse to sit on the sidelines, so I'll keep making the upgrades I need to fight CMT and keep winning at life.

“‎Hold yourself responsible for a higher standard than anybody else expects of you. Never excuse yourself. Never pity yourself. Be a hard master to yourself-and be lenient to everybody else.”
― Henry Ward Beecher