CMT and Me — Jill Price

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.

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…

Winter brings cold, wet weather. That means it’s time to begin the search for winter boots. I dread shoe shopping, and I probably dread boot shopping even more. Because of my Charcot-Marie-Tooth disease (CMT),…

Sleep issues are not uncommon for Charcot-Marie-Tooth (CMT) patients: obstructive sleep apnea and restless leg syndrome have been associated with CMT1. Fatigue is my most frustrating symptom, so I have tried…

Someone asked whether males are more severely affected by Charcot-Marie-Tooth (CMT). I thought about how this seems to be true in my family. I have CMT type 1A, as do my father, son, uncle,…

My sweet cat, Shadow, hasn’t left my side in days. I have been experiencing increased joint and muscle pain due to my Charcot-Marie-Tooth (CMT) and changes in the weather, particularly the colder temperatures.

Ugh! I twisted my arm, and now I need to see a specialist. Several years ago, I fell off my bike and dislocated my right elbow, and I still have issues with it. The…

Listening to the song “Things That Make You Go Hmmm” by C+c Music Factory got my wheels turning. There are times when I wonder what in the world people are thinking. I have…

I was recently reminded why I avoid the grocery store on a Sunday morning: the crowds! I find it difficult to navigate a crowded store, especially when there are shopping carts and other items…

I burned my finger the other day. I didn’t feel it right away, which is not that odd of an occurrence for me. Often, I don’t feel the heat and don’t realize I have…

I recently read an article in the Virginia Journal of Education that made me think about my feelings toward my mobility aids. The author, Kelly Hickok, is a wheelchair user, and she described…

I’ve been seeing a lot of articles on the importance of self-care. Self-care involves looking after your mental, physical, and emotional health. Self-care is not a new concept, but it seems to be…