CMT and Me — Jill Price

I cleaned the bathroom yesterday and it now shines and looks and smells great. The downside? I needed a nap after cleaning the tiny room. I am slowly finding that household chores are becoming more and more tiring. I have Charcot-Marie-Tooth, and the disease is slowly progressing. Although I…

One person has stood by my side through it all. This person supports me in everything I do, even if she doesn’t agree with my decisions. She is there for me at any time of the day or night, even when I call her in tears at 3 a.m. She…

I did not realize physical therapy could be such an adventure. WOW. Not only was it informative but it was also a workout! Boy, my muscles ached after the first session. I had an evaluation done a few weeks ago, but the other day was the first session. The…

“Can you repeat that?” “I am sorry, but I cannot hear you, please speak louder.” I am saying these things more often than I used to. It is worse when there is background noise, like an air conditioner or a running projector. This is particularly problematic in the classroom. I…

“To tell or not to tell people about my disability?” That is always the question. When I meet someone, how do I know how they will react to my disease? How can I be sure they will not laugh or turn away? It is not easy to tell people you’ve…

Today, I sat in a cultural proficiency teacher training designed to raise awareness of cultural differences and stereotypes.  The class did an exercise in which we filled in the sentence: “I am_____ and I am not ____.” This got me thinking about how people see others who…

Shoes. Most women have a closet full of them. Most women love to go shoe shopping and get the latest, cutest trend. Not me. I truly hate shoe shopping and always have. It always has been a struggle to find comfortable, cute, wide shoes with enough support for my unstable…

I have been told by many that stress can exacerbate the symptoms of Charcot-Marie-Tooth, and when I am stressed, anxious, or feeling overwhelmed, my symptoms are worse. So, I’m working hard to add balance to my life. Each…

I love to travel. Traveling is tough enough to begin with, and adding in physical conditions like Charcot-Marie-Tooth doesn’t exactly make things easier. But this past summer, I took the risk and embarked on a tour of the United Kingdom with my son, through a CIE coach tour. I have…

It has been almost three months since I received my ankle-foot orthosis braces (AFOs), and I am finally learning to accept them. I have been wearing them almost all day and to all types of functions. They do help me walk better and decrease my typical fatigue levels. But as I…

I woke up and could barely get out of bed. My right hip was throbbing and the pain radiated through my sacroiliac joint (SI joint). The pain is caused by the bone graft that was done on my hip when I had a spinal fusion due to scoliosis…

Ever have one of those days when you drop everything you touch and trip over everything? That was my day recently. I even tripped over my students. I am a teacher and usually have no major issues with my Charcot-Marie-Tooth. It was a rough day, but thankfully my students were understanding…