I crave more on-screen disability, rare disease representation
My husband, Dave, and I love to watch the TV show “Top Chef,” which we stream on Peacock on Friday nights. It’s a little treat to end the work week.
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.
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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…
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It can be challenging to eat healthily with FA, but for me, it’s worth it
Almost every morning I wake up intending to eat well. Sometimes I do eat healthily, sometimes not. This sunny May morning I plan to make myself a berry smoothie with lots of healthy stuff…
New equipment marks a loss of ability, but gain in independence
I was struggling to transfer unassisted from the couch into my wheelchair when I slowly fell on the floor. I worried that my osteoporosis-weakened bones had broken, even though I wasn’t in pain.
Friedreich’s Ataxia Awareness Month reminds me I’m not alone
“He was in a jam/ He’s in a giant clam!/ Rock, rock, rock lobster!/ Down, down …” The B-52s were blaring from the megaspeakers at the crammed party. I was doing…
With Friedreich’s ataxia, a small thing can become a big deal
It was 6 a.m. I was still in bed when my van alarm started going off. Such alarms make me tense, particularly first thing in the morning. My husband, Dave, was up and ran…
After years of meditating, I’m now trying to practice mindfulness
My mind was whirring at what felt like 1,000 miles an hour. I had a paper due, a doctor visit out of state to plan, a dog to take to the vet, and more.
Friedreich’s ataxia fundraisers help me feel empowered and connected
My dad — a vital yet balding older man with a gray beard and merry blue eyes — pedaled alongside me. We were participating in a rideATAXIA event, one of the main fundraisers…
2 small ways I boost my mood with Friedreich’s ataxia
I recently complained to my husband, Dave, that taking care of my health is all I ever do. It isn’t, but that’s how I felt at that moment. Dave replied with some version of…
Why I can personally attest to the benefits of having service dogs
The disease I have, Friedreich’s ataxia (FA), causes loss of mobility among other things, which prompted me to get a sweet service dog named Wendy. Last December, I took Wendy to the…
Hobbies reenergize me when Friedreich’s ataxia symptoms hit
The other day I decided to try watercolor painting again. That may sound like an extremely frustrating activity for someone who signs their name like a 5-year-old. No offense to 5-year-olds. Poor motor skills…
Fatigue management is a key part of living with Friedreich’s ataxia
A while ago, a friend of mine with Friedreich’s ataxia (FA), a disease I also have, told me that she only plans one activity a day. That sounded like sage advice, but it…
I try to keep FA from hijacking my health-related quality of life
I recently returned from a fun vacation with my husband, Dave, and two friends at the Grand Canyon and Las Vegas. We saw a lot, ate a lot, and laughed a lot. At this…
