Defining Yourself - a column by Jean Walsh

The disease I have, Friedreich’s ataxia (FA), causes loss of mobility among other things, which prompted me to get a sweet service dog named Wendy. Last December, I took Wendy to the vet for her annual checkup. Like all of her previous appointments, Wendy kissed the vet, got…

The other day I decided to try watercolor painting again. That may sound like an extremely frustrating activity for someone who signs their name like a 5-year-old. No offense to 5-year-olds. Poor motor skills are one of the symptoms of the disease I have, Friedreich’s ataxia (FA). I’ve always…

A while ago, a friend of mine with Friedreich’s ataxia (FA), a disease I also have, told me that she only plans one activity a day. That sounded like sage advice, but it was advice I haven’t been following in my own life. Last week, for example, I scheduled…

I recently returned from a fun vacation with my husband, Dave, and two friends at the Grand Canyon and Las Vegas. We saw a lot, ate a lot, and laughed a lot. At this moment, my quality of life (QoL) feels great. But that’s not the case all the time.

Imagine standing on top of Mount Everest screaming “Help!,” but the wind is so fierce that your words blow back and no one hears you. Could people do anything if they did? That’s what being diagnosed with my rare disease, Friedreich’s ataxia (FA), felt like. My parents and…

Today I fell getting out of bed and into my wheelchair. Don’t worry, reader, I didn’t get hurt. It was a slow-motion fall. However, I was then stuck on the floor. Finally, after an hour of trying to get up, I called my husband, Dave. He works locally and is…

I am often asked a familiar but bothersome question: “What do you do all day?” When I hear this question, I instantly feel abysmal. It has never been asked with any intention of making me feel flawed, but it does. I feel like I have to take inventory of everything…

One thing I am, because I want to be, is a gardener. I love the feel of warm soil in my hands, the smell of jasmine, the beauty of a big peony bloom, and more. I’m also a Friedreich’s ataxia (FA) patient. I was diagnosed more than 40…