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…
Columns
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…
Scrolling through Instagram recently, I was left teary-eyed and introspective when I happened upon one particular reel. It features an oft-used voice-over of a sweet older woman talking, set to pictures and videos of precious moments with children as we hear the following: “I’ve reached the last years…
Because of my mom’s poor health, I’ve been spending more time lately talking with my family. I recently spent a few days with one of my brothers helping Mom settle back into her house after nearly eight weeks in the hospital. My brother’s kids are regular topics of our…
I have yet to find the secret to living a life where I wake up every morning rejuvenated, motivated, perfectly calibrated, and ready to tackle my day with gusto. I don’t think anyone has, but it’s especially difficult when I’m at the mercy of the wild card that is…
Recent Posts
- Redefining independence when faced with Friedreich’s ataxia progression
- Wearable sensors accurately detect FA in walking test, study shows
- I can honor my heritage by bravely managing my FA symptoms
- When I focus on what I can control, problems become opportunities
- Researchers spot new ultrasound patterns across peripheral nerves in FA