Last weekend, I realized how tough it is to do certain things due to Charcot-Marie-Tooth disease (CMT). It affects my balance, coordination, gait, and dexterity in my hands. That means that simple things like putting on jewelry or zipping up a dress can be frustrating. I have discovered a…
CMT and Me — Jill Price

Recently, I joined a photography group for moms, and with them, I’ve been learning new techniques to feed my passion. However, there are times that I find these techniques difficult due to Charcot-Marie-Tooth (CMT). My hands sometimes shake which makes the photo blurry, or I hit the shutter too soon…

A lot of people on the internet are talking about the benefits of celery juice. Scores of people, including celebrities, claim to feel better after drinking 16 ounces of pure celery juice each morning. Some claim that it gives them relief from a variety of diseases and disorders. I decided…
Can Having CMT Be a Good Thing?
The other day, someone posed the question, “What do you hate the most about having Charcot-Marie-Tooth?” I could probably write a book about what I hate about this disease. The same person also asked, “What do you like the most about having Charcot-Marie-Tooth?” That proved to be harder…
Proud of Me for What?
Why do people tell me they are proud of me for going to the gym? Is that something that I should be proud of? Yes, it is true that going to the gym and working out is not always the easiest thing to do, but does that make it a…
After walking around Jamestown Settlement this past week, I’m really wondering how much longer I, as a schoolteacher, can go on these big field trips. I am not one of those people who uses my disability as an excuse, but this trip took a toll on me. I have…
At my Weight Watchers meeting, the coach asked us what activities we would do if we had no restrictions. I began thinking about it. I have Charcot-Marie-Tooth type 1A and wear ankle-foot orthoses; therefore, I am somewhat limited in my choice of activities. Some things are just not…
I recently read a post on social media about “mom confessions”: the good, bad, and ugly things we do as moms. Trust me, I have my fair share of those confessions. I began to think about it in terms of my Charcot-Marie-Tooth disease (CMT), the good, bad, and ugly…
This week at Friday night services, my rabbi’s sermon was about the Torah portion Leviticus 14:1-15:33 and how people were excluded because of illness. He spoke about the isolation and exclusion caused by their illness. This got me thinking about how those of us with disabilities can…
Finding a New Doctor with CMT
When you have a chronic illness, finding a doctor who is knowledgeable about your condition can be a long process. Depending on your disease it may be difficult to locate a medical expert close to where you live. I have Charcot-Marie-Tooth (CMT) and following my diagnosis, I…
I heard Brad Paisley’s “Letter to Me” the other day. It got me thinking about what I would tell my younger self about growing up with Charcot-Marie-Tooth (CMT) 1a. Dear younger self, First of all, everything will work out. I know it does not seem like it,…
Ableism is discrimination or prejudice against people with disabilities. It can occur in many ways — some ways subtle and others overt. A person with a disability may experience ableism as unwelcome stares or a building or event being inaccessible. Though I have encountered ableism for ages,…
The Center for Eating Disorders defines body image as the “subjective picture or mental image of one’s own body.” It is how one feels about their body, and can be positive or negative. Having a positive body image is difficult enough without having a disability. In today’s…
Recent Posts
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- Ankle, foot surgery allows adults with CMT to achieve personal goals November 13, 2025
- Existing in the tension between thoughts and actions, part 2 November 11, 2025
- Existing in the tension between thoughts and actions, part 1 October 21, 2025
- Partners team up for long-awaited trial of CMT4J gene therapy October 8, 2025
- Advocates aim to raise visibility of CMT during Awareness Month September 10, 2025
- In youth fitness programs, inclusion is the key September 9, 2025
- Zeus KAFO brace aims to support mobility in CMT, other conditions August 13, 2025
- Unraveling the Gordian knot of sleep issues and CMT health July 31, 2025
- Cure CMT, Tamarack join to expand patient access to orthotic devices July 9, 2025