This month and beyond, let’s cultivate our disability pride
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…
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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We all should advocate for our healthcare rights
Last week, I had my annual echocardiogram, known informally as an echo. My doctors want to keep an eye on my heart function because I have Friedreich’s ataxia (FA), and one of its…
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Shoe shopping with FA is tough, but worth the effort
Recently I had to purchase shoes. I’ve always loved shoes and clothing, and I feel creative when I select an outfit that reflects who I am. Also, I simply feel better when wearing…
Medical trauma never goes away in life with chronic diseases
Even after 42 years, I still remember the day a neurologist diagnosed me with Friedreich’s ataxia (FA). He told my parents and me that I had about 16 years to live and six…
Travel is challenging for people with disabilities, but to me, it’s worth it
Mother’s Day is a tough one for me. My husband, Dave, and I lost a much loved, wanted, and planned-for baby in 1999. My mom died in 2016, and Dave’s mom died in early…
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.
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…
