I was released from physical therapy, finally! Don’t get me wrong, I liked my physical therapist, even though he made me work hard during our 45 minutes together each week. So, what did I gain from physical therapy? I feel like I gained…
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…

How do you know you are important to people? What is a sign that you are not only loved but really important to them? The other day, my dearest friend told me she was getting a tattoo. I thought, “OK, that is great, I’m…
My AFO Saga Continues
In my continuing ankle-foot orthosis journey, I picked up my new AFO for my left foot. It has been a very different experience from where I started this journey. The journey began in December 2017…
Dealing with My Son’s CMT
My 14-year-old son has Charcot-Marie-Tooth disease, but you would never know it. He is an active, adventurous, and goofy teenager who does not let CMT stop him from doing anything. When he was learning to walk, we noticed some minor issues…
“I appreciate the struggle. I have mobility issues, too.” A person I had just met said this to me one day. I was uncertain about what she meant. Did she think I struggled with things? Did she think I…
Lately, I have been doing a lot of reading about mindsets. I am taking an online class about how mindset impacts our learning. It’s about how by changing what you say to yourself, you can change how you think and feel. This got me thinking…
Summer Is for Wearing Shorts
“What did you do to yourself?” That was the first thing the saleswoman at the dress shop said to me before she even said hello. I was taken aback by her question. My good friend realized this and started to answer, “Nothing …” Then I…
Have you ever had a headache so severe that all you can do is stay in bed? The kind in which every sound and bright light sends ripples of pain through your head? I have. Many times. I finally decided to speak to my doctor about these horrific headaches. They…
It was a busy week of doctor appointments — and decisions. First, I went to see my new orthotist. I’m so glad I decided to speak up about how the other orthotist made me feel. My new doctor listened to my concerns. She adjusted the…
Summer Is a Time to Recharge
Why is summer break so important? Because teaching is tough and exhausting. Throw in a physical disability like Charcot Marie-Tooth, and it is even more challenging. People often ask why I do not work over the summer. When…
How should I exercise? Which activity is best for me to do? Those are always repeated questions when you have a chronic progressive disorder. I have Charcot-Marie-Tooth. I would like to lose weight and improve my overall health. However, it is not always easy when you are dealing with…
It’s been a week of firsts for me. It was an overwhelming week in many ways, although I did learn a few things along the way about myself and the importance of speaking up. It all started after a visit to my orthotist. My ankle-foot orthotics (AFOs) are causing pain…
Recent Posts
- Rare mutation drives woman’s unusual CMT symptoms: Report December 11, 2025
- 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