I have been attending a leadership training for people with rare diseases. The training is fueled by fierce moms trying to pave the way for their children to live in a better world full of cures. I am envious of those kids. As a preface, I must say that 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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I have started fundraising for my next service dog so Wendy, my current service dog, can retire. It has not been easy, but I know it’s time. Wendy is always happy to help me, mainly by picking up things I drop, and she is always spot-on in public — except…
Last week, I took a slow-motion fall. While transferring from bed to my wheelchair, I tried to reach for something — so I could be quicker — and landed on the floor. I am no longer able to transfer from the floor to my wheelchair. Wendy, my service dog, can…
I’m a regular at my gym. Because of transportation issues — a story for another column — I didn’t get there for about three months. Last week was my first week back. So I had to mentally prepare myself for the questions coming my way: “I haven’t seen you in…
I was transported to a joyful memory while listening to the radio a few days ago. I’m in the home where I grew up, and it’s sunny and cheerful. My sisters, Lisa and Tricia, and I are dancing around the living room, yelling first “I will get by, I will…
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, and we were overwhelmed by the care, respect, and kind curiosity we were shown. It was…
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 have Friedreich’s ataxia, I use a wheelchair and have a service dog. I hate the…
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 people in my Friedreich’s ataxia (FA) community are not doing well or have passed away.
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 do that repeatedly. I was determined to excel in my neurological exam. Now, I look back…
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.
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 jogs alongside me. Like most dogs, Wendy is thrilled when she knows she’s going out. Wiggling…
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 I walked on the edge of the road to avoid tripping in the dark while Dave…
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 ataxia (FA). The answer I came to and always give that voice in my head is…
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