Why do people tell me they are proud of me for going to the gym? Is that something that I should be proud of? Yes, it is true that going to the gym and working out is not always the easiest thing to do, but does that make it a…
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Once, while I was walking down the hallway with my classmates, my high school Spanish teacher asked me if I had hurt my ankles. It may have been the first time he had watched me walk. He then proceeded to walk ahead of my group to demonstrate my…
After walking around Jamestown Settlement this past week, I’m really wondering how much longer I, as a schoolteacher, can go on these big field trips. I am not one of those people who uses my disability as an excuse, but this trip took a toll on me. I have…
Charcot-Marie-Tooth. The first word is pronounced like “Shar-ko.” And it has nothing to do with shark teeth. That’s how Arlene, the protagonist of “Arlene on the Scene,” clears up the confusion related to her disease’s name.
At my Weight Watchers meeting, the coach asked us what activities we would do if we had no restrictions. I began thinking about it. I have Charcot-Marie-Tooth type 1A and wear ankle-foot orthoses; therefore, I am somewhat limited in my choice of activities. Some things are just not…
I couldn’t help but smile when I saw Bernadette Scarduzio pop up in the final moments of Episode 3 of the sixth season of “Orange Is the New Black.” Her character has no dialogue, but she and her scooter are on screen long enough to make an impression…
The 2013 documentary film “Bernadette” was a milestone for Bernadette Scarduzio in many ways. It wasn’t just the first movie project she was a part of, it also was a coming out for her. The documentary marked the first time she came out as gay and her first time…
I recently read a post on social media about “mom confessions”: the good, bad, and ugly things we do as moms. Trust me, I have my fair share of those confessions. I began to think about it in terms of my Charcot-Marie-Tooth disease (CMT), the good, bad, and ugly…
A few days ago, my sister messaged me on Facebook about a documentary regarding Charcot-Marie-Tooth disease (CMT) called “Bernadette.” I hadn’t heard about it before, but because I had nothing else planned for the evening, I decided to check it out. It’s a touching film, but what struck me…
This week at Friday night services, my rabbi’s sermon was about the Torah portion Leviticus 14:1-15:33 and how people were excluded because of illness. He spoke about the isolation and exclusion caused by their illness. This got me thinking about how those of us with disabilities can…
Recent Posts
- Unpacking my beliefs about physical strength, part 1 February 24, 2026
- NMD Pharma’s oral drug ignaseclant improves muscle strength in CMT study February 17, 2026
- Healthy eating can be challenging for adults with CMT, new study finds February 12, 2026
- Considering the impact of AI on the disability community February 10, 2026
- CMT patient advocate to be honored by MDA for helping advance research January 15, 2026
- 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