Sometimes life with Friedreich’s ataxia (FA) can feel smooth, all things considered. Now and then, the accommodations my disabilities demand or the adaptations my symptom progression requires don’t seem that intrusive. I feel like I am, for the most part, able to take part in my life. My participation…
My Darling Disability - a Column by Kendall Harvey
I’m 100% dependent on mobility aids due to my current stage of Friedreich’s ataxia (FA) progression. Given that, there’s never been a shortage of reactions by others to my various walkers and wheelchairs. In my personal experience, most toddler boys are fascinated by anything with wheels, so I’ve…
Being able to recognize your needs is a big sign of maturity. As a parent, I’ve had a front-row seat as my two young children, who have very different personalities, learn to recognize when something is “off” in their body. The Gottman Institute explains that anger is a secondary…
I’ve been struggling with my mental health lately. I’ve been grappling with feelings of inadequacy rooted in my Friedreich’s ataxia (FA) and subsequent inability to be an independent and effortless helper in my family, integrally or physically. I’ve felt like a burden, incapable of benefiting those around me —…
Friedreich’s ataxia (FA) can feel incredibly isolating. I’m fairly certain that rings true for most people going through life with a rare disease. Because FA is so rare, affecting only about 1 in 50,000 people in the U.S., few folks have even heard of it, much less understand…
Friedreich’s ataxia (FA) is hard. Its symptoms are far-reaching and its progression can feel relentless and inescapable. When you give it the power, FA can make good or mundane days feel bad, and make bad days feel like the worst. I notice that when I view life through the…
Last week, my family and I were in Destin, Florida, for my 10-year-old son’s baseball tournament. We intentionally built in a substantial amount of time to play on the beach, swim, enjoy fun restaurants, fish, and relax. His baseball team, coached by my husband, Kyle, has played together for four…
I’m a firm believer that life should be celebrated. I love decorating the house for holidays, birthdays, the first or last day of school, and anything else that provides my family with an excuse to get excited about life. It helps to break the monotony of our weekly routine and…
May is always a hectic month for my family. With school functions and class parties, youth sports, birthdays, Mother’s Day, and the approach of summer, life moves quickly this time of year. While part of me can hardly believe that the school year is already coming to a close for…
As I adapt to this new stage of my Friedreich’s ataxia (FA) symptom progression — being 99% dependent on seated mobility aids when I’m away from the comfort and adaptive safety measures I rely on at home — I’ve been given the rare opportunity to reshape my perspective yet…
Recent Posts
- Scientists link shrinkage of key brain pathway to FA motor symptoms
- My to-do list always looms, but self-compassion helps me manage
- How FA influenced our decision when it was time to buy a car
- I shed the ‘How does she do it?’ dream to be a helpful person who needs help
- New FA drug nomlabofusp on track for US filing in June seeking its approval