“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I hadn’t seen them in over a year due to the pandemic, and in that time, they’d gotten engaged. When they…
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The word “hope” has been woven through many of my conversations lately, especially in the last week. I’m participating in a clinical trial, and I had my first in-person visit in nearly two years. I am supposed to go every six months, but flying across the country for an…
‘We’re All in This Together’
Welcome, friends! I hope you are staying cool and spending some quality time with those you love. I am so thankful for you and the part you play in this community. It’s July and super hot here in Alabama, where I live. My family and I have probably been watching…
As a Friedreich’s ataxia (FA) patient, my options for exercise are limited. I can’t go to kickboxing or step classes with my friends, and I can’t go for a run or a hike. While many popular types of exercise, such as dancing, high-intensity interval training, and the bar workout, are…
I’m no stranger to this question, but I wasn’t the one who posed it recently. Ever since I was diagnosed with Friedreich’s ataxia (FA) in childhood, I’ve dealt with its progressively disabling symptoms, including the transition from awkwardness to quitting sports to using a wheelchair — all during puberty.
Dear 2013 Kendall, Your world was just rocked and turned upside down. I know you feel like your future is an impossibility now that Friedreich’s ataxia (FA) has clouded your blue skies. I am here to tell you that yes, that future is gone. But it doesn’t mean you have…
I pride myself on getting a lot done and being a productive individual. Although I enjoy some downtime here and there, I often feel pressure from my unfinished tasks or my never-ending to-do list. That pressure makes it hard for me to watch TV, especially a series I can…
While Friedreich’s ataxia (FA) is a physical disease that happens to my body, I have noticed that my physical symptoms affect my mental outlook on life. I have always been the type of person that is part of the action. Whether I am the mastermind behind planning the fun or…
Tonight’s the big night. He’s been preparing for this moment for a long time. He will win. He has to. In about half an hour, I’d watch Damon Vincent’s first professional MMA fight. I’m not a big mixed martial arts fan. (I figure if I want to watch belligerent…
As the Fourth of July approaches, I’m thinking about the word “independence” a lot. At 32, my independence looks different than I’d once imagined. As a Friedreich’s ataxia (FA) patient, my body is progressively losing so many abilities. Most noticeable and problematic is my degenerating coordination and balance.
Today at work I participated in a meeting, which was really just a gathering of co-workers for the purpose of connecting and visiting with one another for a couple hours. We all worked through a version of an icebreaker activity commonly referred to as “Rose, Thorn, and Bud.” In…
As a Friedreich’s ataxia (FA) patient well along in my symptom progression, I have a strained and emotional relationship with my mobility. Over the last three or so years, that same internal struggle has extended to my mobility aid. I am lucky that I lived a wonderfully carefree and…
Recent Posts
- ‘Iron overload’ in mitochondria linked to heart damage in FA: Mouse study
- Getting the flu always makes my FA symptoms worse
- Yet another fall results in nose reconstruction surgery, part 2
- What it’s like on the hard days, when hope comes up short
- Skyclarys improves nerve cell function in new Friedreich’s ataxia lab study