Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA patients. An integral part of my efforts to make a real difference is the event rideATAXIA. rideATAXIA takes place…
My Darling Disability - a Column by Kendall Harvey
I’m always alarmed when I notice the progression of my Friedreich’s ataxia (FA) symptoms, which highlight the harsh reality of my progressive neurological disease. Recently we got a new puppy, and training her has highlighted my FA progression. The last time I had a puppy was 2008. I got…
One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I knew something was wrong because I was falling more than I did previously, and it happened more frequently than the average person my age. I am participating…
I was an athlete until my mid-20s. I swam competitively for 14 years and was a cheerleader, a volleyball player, and an avid runner. My involvement in organized sports ended with my formal schooling. However, that didn’t stop me from keeping in shape. I went to the gym at least…
Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is a magical month full of joy. It’s hard not to notice the progression of my Friedreich’s ataxia (FA) symptoms during the holiday season. I have vivid…
As a Friedreich’s ataxia (FA) patient, I use a walker 95 percent of the time. FA interferes with my balance and coordination, so my walker prevents falls by providing something stable to hold on to. Rationally, adjusting to a mobility aid was easier than I thought. For me, it…
I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. This hat is too big, ugly, and dominating. I don’t feel like myself in it. It doesn’t feel right on…
Columns
Wishing Away Friedreich’s Ataxia
Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute. I don’t want to have FA. I want to be “normal.”…
As a mom, I am obviously around kids all the time. But not just my own. I am around kids when I take my children to school, T-ball, church, play dates, restaurants with playgrounds, etc. I encounter countless kids each week. As an FA patient dependent on a mobility…
Earlier this year, I was extremely nervous about using my walker in public. Previously I had been able to “hide” the effects of my Friedreich’s ataxia (FA). I used shopping carts, friends, or strollers for stability. However, my FA progressed to the point that I needed more…
Recent Posts
- I’m living proactively with FA, but going with the flow, too
- Friedreich’s Ataxia Awareness Month to focus on education, community
- The strength of today’s FA community is a result of hard work and progress
- The two types of people who ask questions about my disability
- Hope has a way of quietly appearing when we least expect it