CMT and Me — Jill Price

As the holiday season approaches, so does the opportunity to travel. However, traveling with a disability can be more difficult and require additional planning. Many websites are available to provide advice on traveling with a disability. I have found that some of the tips do not apply to…

What do I wish I knew about Charcot-Marie-Tooth disease (CMT) when I was younger? That other people have it, too. I have had CMT as long as I can remember. I am not even sure when I was actually diagnosed — it seems as if it were…

I have an ongoing concern: My feet are cold all of the time! The temperature outdoors can be 90 degrees, yet my feet still will be ice-cold. They are not always cold to the touch, but they feel cold to me. This is most likely due to poor…

I’ll be frank about how I’m feeling about my disease. Lately, I have been struggling with feeling overwhelmed about Charcot-Marie-Tooth disease (CMT). I don’t usually let CMT get to me. However, over the past few weeks, I have had mixed emotions about this crazy disease. I can’t pinpoint…

I have AFO woes … again. I am becoming very frustrated with my ankle-foot orthoses. They may be better for my ankles, but what good are they if they are uncomfortable? Yes, I shared that with my orthotist many times. But each time she adjusted one area,…

I used too many spoons today. I will pay for it tomorrow. According to the “spoon theory,” I have a limited number of spoons to use each day. Spoons represent energy expended when doing everyday chores and activities. Different tasks require different amounts of spoons: Loading the…

This week, I really did not like this disease. I have Charcot-Marie-Tooth disease type 1A, and for some reason this week was a rough one. I fell twice. Thankfully, I did not get hurt, although one day I woke up with random bruises and a strange cut…

Two months ago, I had an interesting conversation with my eye doctor while she looked at photos of my eyes. “Do you have joint pain?” Yes, I have chronic hip and ankle pain due to Charcot-Marie-Tooth, I told her. “Do you have trouble sleeping?” Yes, all the…

Mom guilt will always get you. Why do I feel guilty when I cannot do something or be somewhere for my son? It’s probably because society has this ideal for moms. We are expected to be everywhere and do everything. Social media sites like Pinterest can add…

I constantly say sorry by instinct and without reason. I’ve even been apologizing for my disability. No more apologies! I have Charcot-Marie-Tooth disease Type 1A and I wear ankle-foot orthoses (AFOs) to help with stability and walking. At times I use a cane if I’m walking or standing…

The other day, I watched a video about the late Claire Wineland. In it, she said many people believe that if someone is sick or disabled, they must be unhappy. When someone who is sick or disabled receives that type of message over and over, they may…

“Fair does not mean equal.” I always start the school year by teaching my class that concept. I start by giving each student a paper with the name of an injury or illness written on it. Then, they visit the “nurse,” and I give each of them a…