Air travel with my service dog is well worth the planning
As you read this, I’ll be on my way home to Massachusetts from a family wedding in Georgia. Right now, I’m getting excited about seeing family I haven’t seen in a while. Because I…
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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Past doctor visits made me feel more like a specimen than a person
About 11 years ago, I visited Voyager Therapeutics. The company was, and still is, working to develop a gene therapy for my disease, Friedreich’s ataxia (FA). My dad joined me on that visit,…
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Survivor’s guilt is my companion in living my life with FA
I sometimes feel afraid to open Facebook. I’m curious about how my friends are doing and what they’re up to, so I log in. Beyond many happy updates, however, I also see that some…
Magical thinking was ever-present in my early days with FA
Before my neurology appointments, I practiced tasks like touching my forefinger to my thumb, forming the “O” of the “OK” symbol. Part of my exam was, and still is, measuring how quickly I can…
The privilege and hardships of growing older with FA
Late-onset Friedreich’s ataxia is a rare form of the disease that begins after age 25 and typically progresses more slowly. Though symptoms may be milder, it can still affect balance, speech, and daily life.
Sometimes I feel powerless when dealing with Friedreich’s ataxia
Walking my service dog, Wendy, in the winter poses quite a challenge. When I take her out, she’s clipped to my wheelchair, which I use because of my Friedreich’s ataxia (FA). Then she…
A threat to Section 504 could put our disability protections at risk
On a muggy Fourth of July in Georgia in 1993, my husband, Dave, and I walked along the side of the road, returning to our car after watching fireworks. There weren’t any sidewalks, so…
Making a stand with the many Rare Disease Day advocates
Like many of us who get diagnosed with a scary illness, the question of “why me?” ran circles around my head. I chased that voice hard, wondering what I did to deserve Friedreich’s…
Getting diagnosed with FA made me afraid of wheelchair users
When I was diagnosed with Friedreich’s ataxia (FA) in 1981, I was a sophomore in college. I lived in a newly renovated dorm that was wheelchair accessible, and, naturally, a woman who used…
Why I’ve made plans to donate my body to science after I die
My husband, Dave, and I had a tough year in 2023, when Dave lost both parents. Our grief has lessened, but we’re still working through it. At times our ability to grieve was blocked…
When losing our abilities to FA, the feeling of grief is real
Unsurprisingly, after steering my wheelchair into a wall for the fifth time that day, I found myself amid a temper tantrum. For me, these usually involve yelling curse words at Friedreich’s ataxia (FA),…
The challenges of managing FA and using a wheelchair in the winter
Today is another brutally cold January day here in Massachusetts. Both my Friedreich’s ataxia (FA) and my wheelchair use mean I don’t spend as much time outside as I’d like. Why? FA limits…
