What do my email inbox and toothpaste have in common? They both have started to wear me out. I always prided myself on my tenacity and work ethic. I knew how to hustle, get things done, organize, streamline, and then reassess to do it better next time. Then Friedreich’s…
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Life with a progressively degenerative neurological disease like Friedreich’s ataxia (FA) is a lot to handle. Not only is it incredibly frustrating and heartbreaking physically, but it is also relentlessly emotionally draining. In the decade that I’ve been living with FA, I think my most common complaint is…
I am often asked a familiar but bothersome question: “What do you do all day?” When I hear this question, I instantly feel abysmal. It has never been asked with any intention of making me feel flawed, but it does. I feel like I have to take inventory of everything…
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…
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…
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