It’s so easy to get down about the daily struggle of becoming progressively more disabled. Every single day, more of my abilities and independence slip away, and I rely more heavily on my village for support. Although this brings up a lot of hard, sad, heavy, difficult-to-process feelings, it…
Columns
I’ve never been a fan of making big resolutions at the start of a new year. I don’t like the idea of a “new year, new me.” I think the reason I’m harsh on New Year’s resolutions stems from the onslaught of my progressive disorder, Friedreich’s ataxia (FA). As…
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…
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…
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