Living with a progressive condition like Friedreich’s ataxia (FA) means consistency can be hard to find. I’m sure you can imagine the ups and downs I deal with concerning my health. FA’s progression forces me to adjust my routines weekly and sometimes even daily. I’m blessed to still be…
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One thing I am, because I want to be, is a gardener. I love the feel of warm soil in my hands, the smell of jasmine, the beauty of a big peony bloom, and more. I’m also a Friedreich’s ataxia (FA) patient. I was diagnosed more than 40…
I saw the smile on the face before me tighten as the words from my mouth registered. I needed to duck out of the gathering early to go home and care for my 11-year-old daughter, Amelia, who has Friedreich’s ataxia (FA). My family was having an “FA is getting…
As we approached the end of 2023, I didn’t feel like myself. I was overwhelmed by most things in my life, and I constantly felt inadequate. That made it easy for me to retreat, curse my circumstances, cancel plans, and spread my bad mood like a plague. I’d been functioning…
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…
Bionews CEO Chris Comish often repeats the phrase “We’re just getting started.” He’s said it so many times that it’s become an unofficial motto at the company. But the phrase is more than a well-wish; it’s also a call to action and a reminder to stay the course because…
The magic of the season belongs to children — their laughter, joy, and beaming smiles. Though the pediatric population isn’t always seen at events for Friedreich’s ataxia (FA), their value and presence are no less real in our community. I’ve met many incredible caregivers with a…
Actor and activist Michael J. Fox, 62, has been publicly battling Parkinson’s disease since 1998. Although Parkinson’s and my diagnosis of Friedreich’s ataxia (FA) are very different, they are both neurological diseases that affect your ability to function “normally,” cause pain and heartache, and are currently…
When life gets overwhelming, my mind will often escape the reality before me, at least momentarily. I’m unsure if these brief internal retreats are daydreams, escapes, or the products of an overactive imagination; maybe all of them. But I’ll refer to this tendency as “dreaming” in this column. To me,…
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…
I’ve heard it a thousand times: “Experience is the greatest teacher.” And although there’s a lot of truth to that, I’m not sure it covers every situation. I, for instance, often repeat frustrating or disappointing experiences and wonder how I let myself continue the behavior that led me there. In…
If you’re unfamiliar with Fanny Crosby, allow me to introduce you to one of the greatest poets America has known. After singing one of her great hymns one Sunday as I worshiped at my local church, I later recollected the words and recognized their affinity to this column,…
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