Much like fingerprints, many experiences are similar at a glance but unique upon closer examination. This is especially true in the rare disease community. Although our conditions are very different, we have many things in common. This has been on my mind recently due to an unexpected source. My friend…
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“So, does it ever get easier?” My eyes slid off the curly mop of brown hair belonging to a curious toddler and up to the questioning eyes of her mother. Pulled in by the pile of snacks my girls had left out on the picnic table, the 3-year-old had come…
From the minute I wake up each morning, my disability and limitations are in my face, demanding attention, adaptation, and adjustment. In other words, I’m not allowed a moment of bliss when I can forget that I have Friedreich’s ataxia (FA). I guess you could say that feeling…
Note: This column describes the author’s and interviewee’s own experiences with Skyclarys (omaveloxolone). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Hope is crucial for those in the Friedreich’s ataxia (FA) community. For me, facing a rare degenerative…
After nearly a week of learning to use my new wheelchair, it was time to venture out in public. Why, you may wonder, did I hesitate? And why dramatize such a trivial thing with such foreboding language? When the chair arrived, and after I was finally able to sit in…
As August marches onward, the memes around children returning to school abound. But the ads for back-to-school sales have triggered a new feeling in me this year, and it’s unpleasant. Once again, our 11-year-old daughter’s diagnosis of Friedreich’s ataxia (FA) has made normal feelings abnormal. Surrounded by other parents,…
On Aug. 19, 2013, my world was turned upside down as my five-month diagnostic journey came to a shocking conclusion: I had Friedreich’s ataxia (FA), a cruel, progressively degenerative genetic disease I’d never even heard of. Some days, it feels like I’ve been managing the symptoms for…
I feel fortunate that I still enjoy a lot of independence and mobility, despite Friedreich’s ataxia (FA). My progression has been slow and mild compared with many folks with the disease. I’m 42, my heart is healthy, and I still walk. Although I started using a rollator a few…
While the research on the benefits of mindfulness is strong, my ability to engage in the practice is weak. I’ve discussed the positive outcomes of being present as a professional and then, in my personal life, tackled my never-ending to-do list like it’s a race. This builds up an anxiousness…
Last weekend, I did something for the 10th time that I never imagined doing even once. I signed up Team Kendall for the annual fundraising event rideATAXIA in the hopes that I can contribute enough to tip the scales to save my life. For the 10th time, I will…
Across a little wooden bridge, with the creek underneath and the manufactured habitat surrounding and running alongside, was the home of three small, gray foxes. One of them ran with the others under the bridge, onto the quiet meadow, and through the trees, distinguishable only by its three legs. I…
Unknowingly, I spent most of my life preparing to be the mother of a child with Friedreich’s ataxia (FA). Former life lessons show up again in the form of old friends, gentle reminders, or sometimes a smack on the head telling me I need to change my thinking. When…
Recent Posts
- Confronting the illusion of choice with Friedreich’s ataxia
- Mouse model shows iron imbalance in FA varies by tissue and age: Study
- How I field the question, ‘Why are you in a wheelchair?’
- Scientists link shrinkage of key brain pathway to FA motor symptoms
- My to-do list always looms, but self-compassion helps me manage