Defining Yourself - a column by Jean Walsh

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 symptoms of my rare disease, Friedreich’s ataxia (FA), have…

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 my disease community. But one reason is because I internally grapple…

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 couple of stanzas along with the car radio. It was my…

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 as fall approaches. The days are getting shorter, the nights are…

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 Americans with Disabilities Act possible. He also made the point that…

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 I was 9 months old, I could walk. I know I…

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 or more of the fingers is permanently contracted. People with DC…

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 to that point. If you want to save for yourself or…

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 the previous night’s rain evaporating. (I think Wendy smelled the same…

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 possibly being affected. In trying to figure out how best to…