The time has come for yet another transition in my journey with Friedreich’s ataxia (FA). Since my diagnosis in 2013, I’ve had to adapt to my ever-changing needs. As my disease progresses and I lose abilities, I need more assistance. I used a walker from 2018 until 2024,…
My Darling Disability - a Column by Kendall Harvey
At the end of June, I sustained a fall that resulted in a leg fracture. It happened while boarding the plane home from a fabulous vacation with my husband, my children, and my parents. My son and daughter were very concerned about what, if anything, was broken. After we…
Enduring three fractures over nine months — my femur in September, my nose in February, and my fibula in June — has certainly taken its toll on me. Not only are fractures and recoveries disruptive, painful, and exhausting, but they’re also emotional for me as someone with Friedreich’s ataxia…
Lately, I’ve noticed a word used very frequently in casual conversations. It can have multiple meanings, depending on the context, but in my case, as someone living with visible differences, it seems to imply a problem. In public, I’ll hear kids ask their parents, “What’s the matter with her legs?”…
My family, including my parents, recently took a grand vacation. We started in West Yellowstone in Montana, where we watched a juvenile black bear hunt a squirrel, swim across a river, dig for grubs in a downed tree, and relax in the sun. We also saw waterfalls, canyons, thermal pools,…
When you have school-age kids, summer can be quite an adventure. Establishing sustainable and achievable routines that will serve me and my Friedreich’s ataxia (FA) is a priority when summer arrives to my home each year. Since we no longer have homework or alarm clocks to mind for a…
A few years ago, I heard some advice about the power of perspective. It was framed as parenting advice, but it translates so well to nearly every life-planning situation. Julie Richard, founder of the Fearless Mom ministry, explained that the “most common question I get is, ‘I don’t want…
As I get further into my journey with Friedreich’s ataxia (FA), I realize how important smiling is. When I smile, it not only conveys to those around me that I am at least fine, if not better, but it also tells my brain the same. I get a lot…
My family and I recently started streaming season 20 of the popular show “America’s Got Talent,” also known as “AGT.” I love seeing my children react to the beautiful singing, athletic dancing, mind-blowing magic, edge-of-your-seat danger, and much more. To quickly summarize, all acts must audition for four judges, who…
I like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other. But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my…
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- People with FA don’t need to explain how they spend their time
- Compound found in broccoli may be ‘strong’ drug candidate for FA