Feeling frustrated is a regular part of my life with FA
I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a…
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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The dangers of making comparisons between FA and other diseases
My husband, Dave, and I have been watching “Red Election” on Hulu. One of the ads we’ve seen repeatedly is for a medication for Dupuytren contracture (DC). DC is a treatable, but not…
Living with disability makes everything more expensive
I’ve been saving for a new van with my ABLE savings account because my current one is getting crotchety and old. It’s not breaking down all over the place, but I want to…
Living independently looks different for those with disabilities
Walking my service dog, Wendy, is fun, relaxing, and, oddly, one of the things I do daily that makes me feel independent. Yesterday, the sun was shining down on us even as we inhaled…
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…
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…
