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…

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…

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…

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…

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?…

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…

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…

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…

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…

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…

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…

“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…