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.
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 need a service dog because…
Read more
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 to advocate for myself and…
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 shining, and I sang a…
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 New England, the climate changes…
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 and who made the…
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 vast understatement. For example, when…
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 curable, disorder in which one…
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 replace it before it gets…
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 the warm, musty smell of…
I just finished reading “The Beauty of Dusk” by Frank Bruni. It is largely a memoir of his experience having a stroke that caused partial blindness in one eye. He must also contend with his other eye…
Recently I had to purchase shoes. I’ve always loved shoes and clothing, and I feel creative when I select an outfit that reflects who I am. Also, I simply feel better when wearing an outfit that feels like…
Even after 42 years, I still remember the day a neurologist diagnosed me with Friedreich’s ataxia (FA). He told my parents and me that I had about 16 years to live and six years before I’d start using…
Visit the Friedreich’s Ataxia News forums to connect with others in the FA community.
Get regular updates to your inbox.
