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 Monday, my husband, Dave, and I were on the last leg of our journey home from vacation in the Shenandoah Valley. The GPS interrupted our Audible book and said, “Take exit 90 toward…
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Unsurprisingly, after steering my wheelchair into a wall for the fifth time that day, I found myself amid a temper tantrum. For me, these usually involve yelling curse words at Friedreich’s ataxia (FA),…
Today is another brutally cold January day here in Massachusetts. Both my Friedreich’s ataxia (FA) and my wheelchair use mean I don’t spend as much time outside as I’d like. Why? FA limits…
Like many people dealing with traumatic medical problems, I vividly remember when I was diagnosed. For me, that happened before they had even identified the Friedreich’s ataxia (FA) gene, so I had to…
“The Real Housewives of Beverly Hills” is one of my pleasures. I’m intentionally not writing “guilty pleasure” because I don’t feel guilty for watching the show, even though it’s silly and does…
Every time I shower, I wrestle with the competing emotions of being a little afraid of a fall and wanting to relax into that delicious feeling of hot water beating on my back. A…
I recently saw a short YouTube video extolling the importance of accepting that life is bittersweet. In this acceptance, we can become content. If you’ve been reading my columns, you’ve heard me say…
Note: This column describes the author’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The holiday season is upon…
A couple weeks ago, I wrote that I was planting bulbs in my garden. I’m still doing that because I always buy too many. They’re just too beautiful for me to pass up! OK,…
I’ve been thinking a lot about the stories I tell myself about my life, as they can make a big difference in how I feel. Telling myself a productive story has especially helped me…
Last week, I had a bump in navigating my Friedreich’s ataxia (FA) road. The wheelchair I use because of my FA symptoms went offline. I use a Whill C2 wheelchair, and I…
While attending a recent Friedreich’s ataxia (FA) symposium, I tried, as I always do, to take in the science. I’m grateful that the annual symposium, held by the Friedreich’s Ataxia Research Alliance (FARA)…
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…
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