Jill was diagnosed with CMT 1A at the age of 2. She is a fourth-grade teacher and mom to a teenage son, who also has CMT. Jill loves photography, travel, and spending time with family and friends. She researches and writes tips that make life with disability a little easier.
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…
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…
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…
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