Life has not been easy lately. On top of the constant daily struggles with Friedreich’s ataxia (FA) and its various symptoms that I must adapt my life to accommodate, hardship has surrounded my village. I fractured my femur in September and required surgical repairs. Our Great Dane, Hank,…
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My husband, Dave, and I worried about the possibility of rain on a recent cool, cloudy October Sunday. He was getting his bike ready for the 26-mile rideATAXIA’s Philly ride. If it had rained, it would have been slippery for a touring bike, like the one Dave and many of…
“You can’t miss us. We have a huge metal ramp attached to the front porch,” I explained while giving directions to our home recently. That particular line made me both chuckle and sigh. Getting the ramp installed was emotionally challenging. The former landscaping, once vibrant with spring bulbs and cheerful…
Yes, Friedreich’s ataxia (FA) is hard. Yes, its widespread symptoms are always on my mind. When I am at social events, I am overwhelmingly aware of my disability and the lifestyle adaptations it demands. Despite all of that, it is not the only thing I am capable of discussing,…
Surprises fuel me in life with Friedreich’s ataxia (FA). I normally don’t celebrate my birthday for more than a day, so I didn’t expect a party in September, especially considering that my birthday isn’t until mid-November. I’m turning the big 4-0 this year, but I’d planned to have a…
As my Friedreich’s ataxia (FA) symptoms have progressed, my abilities have deteriorated, forcing me to adapt. My progression has been fairly steady and predictable, all things considered. Except for temporary circumstances like injury or illness, I usually know what the next morning will bring, physically. When it became…
Last Monday, I decided not to listen to political podcasts. I get FOMO (“fear of missing out”) when it comes to political news, so I keep listening to it, even though it doesn’t nourish me. In fact, things I have little or no control over tend to upset me. I…
My son, Brooks, turns 11 this week. Birthdays tend to make me nostalgic, especially my children’s. As the day approaches, I reflect on the passing of time and the coming and going of phases. One of the most memorable phases of my parenting journey coincided with one of Brooks’…
Here in the United States, fall is back-to-school season — something I’m very aware of as the mom of two elementary-age children. This year, the logistics of this season have looked different for my family and me, thanks to our community. Because my balance has been deteriorating due to…
I recently told my husband, Dave, a silly dad joke, but I had to repeat the punchline three times. By that point, it wasn’t even funny — if it ever was. Dave was simply trying to understand me, but I was frustrated that I had to put so much effort…
Last in a series. Read part one. After a traumatic whirlwind of a day, a sleepless night, and surgery to repair my broken hip, I woke up in the postoperative room. That’s always disorienting because you have no clue how much time has passed, how the surgery went, what…
I’ve been reading “The Book of Delights” by Ross Gay. In it, he describes the small, everyday experiences that bring him joy. I am trying to follow that example, but, unlike Gay, I don’t write down my delights. With Friedreich’s ataxia (FA), the physical act of writing is extremely…
Recent Posts
- Finding grace for the FA caregiver during a long winter
- Finding meaning amid the darkness within
- New gene therapy may correct nerve and heart problems in FA: Study
- Redefining independence when faced with Friedreich’s ataxia progression
- Wearable sensors accurately detect FA in walking test, study shows