Jean Walsh hails from Massachusetts. You will find a mental health perspective in her writing, reflecting her two mental health graduate degrees. She has years of work experience, the most pertinent being her experience as a grant writer. Jean was diagnosed with Friedreich’s ataxia (FA) when she was 19, and has been an avid FA volunteer since. She is 40 years into her journey with FA and so has a lot of experience to share with her shared FA, rare, and chronic disease communities.
Last week, I had my annual echocardiogram, known informally as an echo. My doctors want to keep an eye on my heart function because I have Friedreich’s ataxia (FA), and one of its…
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I recently went to Philadelphia for rideATAXIA, a fundraiser bike ride benefiting the Friedreich’s Ataxia Research Alliance (FARA). The event was followed by a symposium focused on summarizing the current research…
Saturday, Sept. 21, was a sloppy one. Skies were gray and rain poured down, but there were lots of smiles to go around. It wasn’t an ideal day for the Race for Matt…
I just got back from a walk with my service dog, Wendy. It’s a beautiful fall day in my neighborhood. The mums are starting to burst with brilliant colors, and some of the…
I just began the process of getting my legacy service dog. A legacy dog follows a current service dog and is super important for those who rely upon these animals for independence. I…
When doing patient advocacy, I’m frequently asked, “Tell me your rare disease story.” My initial response is to sigh on the inside. Why the sigh? After all, I’m fortunate to have been given a platform…
During a recent drive home from an appointment with my new primary care physician (PCP), I felt a dark cloud dissipate that I didn’t even know was hanging over my head. The sun was…
Back-to-school season is almost here again. I see advertisements for it everywhere. Kids want clothes with sharks on them, teachers want kids with calculators, and parents want new backpacks (for their kids). Here in…
I recently read a column by my colleague Ben Hofmeister for Multiple Sclerosis News Today. He wrote that, for him, disability pride is about celebrating the advocates who came before us…
I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a…
My husband, Dave, and I have been watching “Red Election” on Hulu. One of the ads we’ve seen repeatedly is for a medication for Dupuytren contracture (DC). DC is a treatable, but not…
I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to…
Walking my service dog, Wendy, is fun, relaxing, and, oddly, one of the things I do daily that makes me feel independent. Yesterday, the sun was shining down on us even as we inhaled…
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