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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…

“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…

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…

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…