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.
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…
Read more
About 12 years ago, I went dog mushing with my local disabled sports organization, Northeast Passage. It was a once-in-a-lifetime experience. Those of us who participated have various disabilities, and we got to…
I am a work in progress, just like everyone else in this world, so I need to give myself grace. The meaning of grace is essential. Several of my columns, including the…
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…
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…
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…
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,…
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,…
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…
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…
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…
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.
Get regular updates to your inbox.
