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May is an exciting time for the FA community. It’s Friedreich’s Ataxia Awareness Month, a time for all of us who are affected to let our voices be heard! Additionally, May 16 is Friedreich’s Ataxia Awareness Day. Friedreich’s ataxia affects about one…

The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I have an additional big thing: Friedreich’s ataxia. Before I was diagnosed with FA in 2013, I was just like…

About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best able to survive an apocalyptic scenario. Although the real-life coronavirus…

Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA patients. An integral part of my efforts to make a real difference is the event rideATAXIA. rideATAXIA takes place…

On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit or an inability to correct my balance. After the initial thud and the…

As I write this, I just received word that a friend and co-worker passed away in his sleep last night. Unbelievable shock consumed me for several moments. My friend was in his early 30s and a fairly healthy guy who’s been working at the same…

Focusing on times of plenty and excess amid the COVID-19 pandemic seems foreign, or even rude. However, this calamity and all the pain it’s wrought cannot be all we see. Its prison walls are not opaque, just murky. We must look beyond them, look past…

During this pandemic, one of my most important goals is to keep busy and throw in any available distractions. I need to keep my mind from dwelling in negativity. So many things can shove me into a negative rabbit hole so I’ve had to fight hard to stay…

I’m always alarmed when I notice the progression of my Friedreich’s ataxia (FA) symptoms, which highlight the harsh reality of my progressive neurological disease. Recently we got a new puppy, and training her has highlighted my FA progression. The last time I had a puppy was 2008. I got…

I’m really fortunate. My life hasn’t undergone a drastic change even though I’ve rarely left my house in three weeks because of the COVID-19 pandemic. I work remotely and don’t drive, so I’m used to spending most of my time indoors. Since I am…

As the impact of COVID-19 continues to loom over the globe, our concerns and worries seem to increase as well. What started for many as an issue in some faraway region of the world is now a pandemic felt by all humanity.

One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I knew something was wrong because I was falling more than I did previously, and it happened more frequently than the average person my age. I am participating…