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,…
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
Frustration, so common in life with FA, can hijack my morning routine
This morning I was practicing my pre-getting-out-of-bed routine. I take a pill, do breathing exercises, and meditate for about 10 minutes. I mostly follow this routine, but not always. It’s my way of trying…
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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…
Moving forward, reluctantly, with retiring my service dog
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…
Telling my FA story is a complicated labor of love and advocacy
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…
Finding a good primary care physician is challenging for me
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…
My life is not boring due to FA, but it can be frustrating
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…
Grappling with opposing ideas in the disability community
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…
