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There was a time during my childhood when in my mind, I was “Braces Boy” — part boy, part brace. I was in middle school and already wearing ankle-foot orthoses (AFOs) to help with my ankles, which were and continue to…

Do you ever have to rush to the bathroom? Are there times when you feel you cannot control the urge? Or perhaps you urinate frequently — more than eight times in a 24-hour period — or awaken more than two times a night to urinate? This is not uncommon as…

I felt like a child again — and not in a good way. It was a shock and I felt pathetic. But while holding the cheap pair of disposable chopsticks in my trembling hand, unable to pick up my food, I came to a few realizations about my…

I have days when I cannot catch my breath. I may not be exercising or doing something strenuous when this happens. It can happen after walking around a store or loading the dishwasher. Could shortness of breath be another symptom of Charcot-Marie-Tooth disease (CMT)? According to research, CMT can…

At the beginning of every episode of “Mister Rogers’ Neighborhood,” Fred Rogers walked through a door and greeted his audience by singing the show’s theme, “Won’t You Be My Neighbor.”  I’ve…

Growing up with Charcot-Marie-Tooth disease, I had no idea that other people — including celebrities — might have it. I rarely heard of a celebrity with a disability when I was young. These days, famous people with chronic illnesses and disabilities are much more visible. I recently learned that…

For many years, my childhood bedroom featured a photo of Mr. McFeely, the friendly mailman from the beloved children’s television series “Mister Rogers’ Neighborhood.” It was as a souvenir from a meet and greet my family attended. While…

It’s hard to believe that we are in a new decade. I have grown and changed so much in the last 10 years. Looking back, I am amazed at how far I have come. A decade ago, I wasn’t so open about my Charcot-Marie-Tooth (CMT). I told some people close…

Meeting a new neurologist is always an adventure. My son and I recently had our annual appointments at the Johns Hopkins Charcot-Marie-Tooth (CMT) Center in Baltimore. Our appointments were with a new neurologist because ours left the center for a new job opportunity. I had the usual assessments:…

For the past few weeks, I’ve been studying sequences of hand movements and letter combinations. For example, U, R, U’, L’, U, R’, U’, L was one combination I had trouble with. As were F, U, R, U’, R’, F’ and R’, D’, R, D, U. If these…