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When I was in college, YOLO —  the acronym for “you only live once” — became popular. I think it was supposed to be inspirational, encouraging us to take advantage of our time and do something worthwhile. However noble the intention was, that’s not what it became. I…

“Movement is medicine.” I have heard this saying a few times, and I wondered what it was about. Years ago, doctors typically told Charcot-Marie-Tooth (CMT) patients that exercise is not the best option. The Hereditary Neuropathy Foundation is working to change that. The foundation suggests that people with CMT…

“Why does your dad walk like that?” a friend once asked me. At the time, I hadn’t even noticed. He had always walked that way. I knew we had Charcot-Marie-Tooth disease (CMT), but it never occurred to me that he walked funny — or that I did, too. Daddy has…

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…