Thanking my dad for the best advice I ever got
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…
Defining Yourself — Jean Walsh
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.
Featured Post
Ways to cope when life with FA involves post-traumatic stress
The other day I was listening to a podcast. (I think I’m addicted to podcasts.) The interviewee had post-traumatic stress disorder (PTSD), though she preferred that it be called post-traumatic stress injury (PTSI) because…
Read more
Whether you have or don’t have Friedreich’s ataxia, you are relevant
“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…
Falling in the shower is a daily worry in my life with FA
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…
Being content in the face of FA and other adversity
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…
How I respond when people ask, ‘How are you doing?’
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…
The benefits of spending time in nature as someone with FA
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,…
Being intentional about the stories I tell myself helps me navigate FA
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…
Reflections on my power chair now that I can’t use it
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…
2024 FA Symposium left us hopeful and yearning for more
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)…
Connecting with my FA community sparks joy and hope
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…
In life with FA, I’m lucky to have the support of friends who love me
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…
Cracks, slopes, and curbs, oh my: Addressing sidewalk accessibility
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…
