Columns

A friend and I surprised each other recently. I casually mentioned that I have Charcot-Marie-Tooth (CMT). And she revealed that I had never previously brought up the subject. We have been friends for almost 10 years. In college, we spent many late nights together working on articles for the…

The other day, I had to climb the bleachers at my son’s high school. I admit the prospect scared me a little, not only because of the height factor but also because there weren’t adequate railings for me to hold onto. I have Charcot-Marie-Tooth type 1A and…

At my son’s Individualized Education Program meeting, the team asked what accommodations he requires due to Charcot-Marie-Tooth disease. He has little impact from CMT, with the biggest issue being motor dysgraphia. This is a learning disability that affects handwriting and fine motor skills. Our doctor…

I don’t particularly like hiking. Steep inclines and unpaved pathways make me nervous. And sometimes it feels like I have pogo sticks instead of feet. I don’t always know which direction my body will propel me. Nevertheless, the hiking trails along the Blue Ridge Parkway are gorgeous. And whenever…

We pulled up chairs so that we could sit closer to each other. She pointed at her shoe, to a place about an inch from the tip. “See, my toes only come up to about here,” she said. “But you know we buy shoes more for the width than the…

Someone asked me what I miss the most since being diagnosed with Charcot-Marie-Tooth disease (CMT). I had to think hard about it, as I’ve had CMT for as long as I can remember. Has it always been this bad? No, it has definitely progressed more than I…

In grade school, I used to launch my ankle-foot orthoses (AFOs) from my foot and into the air by twisting my toes as I kicked as high and as hard as I could. I would watch my AFOs spin in the sky before they fell to the ground. The…

I recently realized that I have had no lower back pain for a few weeks. Wow! I am almost afraid to say anything, in fear I might jinx it. I typically suffer from pain in my sacroiliac (SI) joint, lower back, and hip. Some days I can…

Recently, my father sent me a copy of doctor’s notes he received in 1989. Those familiar with Charcot-Marie-Tooth disease (CMT) would recognize many of the phrases scattered throughout: “chronic weakness in lower extremities” and “increasing grip weakness,” to name a couple. It was when he first learned he had CMT,…