David Riley

3 weeks ago | friedreichsataxianews.com | Matthew Lafleur |Lindsey Shapiro |Kendall Harvey |David Riley

Note: This column describes the author’s own experiences with Botox injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.​Living with Friedreich’s ataxia (FA) is a journey that tests the limits of one’s resilience. The progressive nature of this rare neurodegenerative disease leads to symptoms that make daily activities increasingly difficult.

Jul 29, 2024 | friedreichsataxianews.com | Jean Ker Walsh |Andrea Lobo |Elizabeth Hamilton |David Riley

I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a vast understatement. For example, when I was 9 months old, I could walk. I know I fell a lot, but I could walk. At some point in my late 40s, I couldn’t walk anymore. Majorly frustrated, sad, and angry are some of the emotions I feel about that.

Feb 8, 2024 | friedreichsataxianews.com | Kendall Harvey |Elizabeth Hamilton |David Riley

Life with a progressively degenerative neurological disease like Friedreich’s ataxia (FA) is a lot to handle. Not only is it incredibly frustrating and heartbreaking physically, but it is also relentlessly emotionally draining. In the decade that I’ve been living with FA, I think my most common complaint is the daily struggle to find a balance (no pun intended) between harmoniously embracing my life and physical limitations and giving life to my negative emotions.

Jan 5, 2024 | friedreichsataxianews.com | Elizabeth Hamilton |David Riley |Kendall Harvey |Matthew Lafleur

The cold, rough surface of the bricks beneath my cheek snapped me out of my shock. I had passed the fallen fire-pit lid in our backyard numerous times with the boomerang thinking that someone would trip on it. And here I was, that someone. We’ve all done it, walked by a hazard with arms full and the to-do list actively engaged. Recognizing its presence and what’s needed to remedy it, we place it in the queue of things to be done. Then life happens.

Dec 19, 2023 | friedreichsataxianews.com | Sean Baumstark |Margarida Maia |David Riley

I always joke a lot about getting older. Although there might be some perks to remaining in my 20s forever, I’ve never been afraid to grow old. I do fear, however, that some of my goals might be cut short by Friedreich’s ataxia (FA). I’ve grown comfortable with the constant readjusting that comes with having a progressive condition. But sometimes I worry that I’ve settled too much in life, at least as it is right now.