When I was diagnosed with Friedreich’s ataxia (FA) in 2013, my family and I had never heard of the disease. So we had a lot to learn about this new, lifelong character that was now a part of our story. My father, the kindest, wisest, and most generous and…
Columns
Lately, it seems like my journey with Friedreich’s ataxia (FA) has been a major focus of my life. Between sustaining three fractures in nine months, meeting new people, and refusing to let my symptoms dictate how I spend my time, I’ve had to accept and adapt to many…
A few days ago, I celebrated my birthday. I love a party, so I love this occasion. It’s a reason to be with friends and family and eat cake. It is one of my happy places. My birthday is also a reminder of my journey with Friedreich’s ataxia (FA).
At the beginning of September, I turned 39. As I enter the last year of my 30s, I feel both gratitude and resolve. Since I was diagnosed with Friedreich’s ataxia (FA) a few weeks before my 26th birthday, it is safe to say that the condition has been…
I’ve been reading Wally Lamb’s latest novel, “The River Is Waiting,” and somewhere along the way I realized that this isn’t just another book I’m enjoying. It’s a reminder of why I keep coming back to Lamb’s work. That realization sent me back to the first time I picked up…
About a week ago, I sat in my husband Dave’s car with butterflies in my stomach. My new service dog, Fresco, sat calmly in the back seat. Fresco and I were about to take the public access test for service dogs. I didn’t want to do it. After only…
One good thing that came out of fracturing my leg this summer is that I’ve resumed physical therapy. I went to physical therapy once or twice a week from 2017 to 2023. We would work on everything. If I had an injury or problematic pain, we would work on…
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,…
Sometimes people ask me what I do with myself all day. I know the question is probably meant casually, maybe even kindly, but it lands hard. I’ll feel myself get flustered, the way I often do when a question carries an assumption I cannot quite name in the moment. Before…
Today, the cabinets, tiles, and other materials for our new kitchen were delivered, and suddenly the renovation feels real. I love the cabinet colors, flooring, backsplash, and everything else I picked out. But now that it is all here, stacked in boxes and waiting to be installed, I keep worrying…
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…
Aug. 13 marked eight years since I first started working with Bionews as a columnist for Friedreich’s Ataxia News. Anniversaries have a way of making us look backward, and this one has me thinking about how different my career looks from the one I once imagined before Friedreich’s ataxia…
Recent Posts
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- Choosing hope even after Friedreich’s ataxia dictates logistics
- Movie ‘The Highest Road’ tracks 2 cyclists with FA on Himalayan journey
- Finding joy in cultivating resilience with Friedreich’s ataxia
- Developer gains rights to experimental FA therapies in $21M acquisition deal