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. 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:…

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), it is difficult to find boots that fit my needs. They have to be extra wide…

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 many strategies to help me sleep better. A few friends recommended that I try a weighted…

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, sister, brother, nephews, nieces, and cousin. We think my paternal grandfather had CMT, but was undiagnosed.

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. Sometimes, I think that Shadow knows when I’m feeling unwell. Though Shadow can’t understand why I’m…

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 other day, I went to pick something up and twisted my arm the wrong way. Now…

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 Charcot-Marie-Tooth (CMT) and mobility issues. That means I use a cane at times and have a…

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 blocking the aisles. This is not only an issue at the grocery store. As my Charcot-Marie-Tooth…

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 burned myself while cooking. I have Charcot-Marie-Tooth (CMT) type 1A, which may affect the feeling in…

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 how mobility aids give her a sense of freedom. She wrote, “We don’t view our wheelchairs…

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 increasingly popular, maybe because people are becoming more aware of the mind-body connection. As a…