Sometimes holding on to hope looks a lot like desperation. I’ve been dealing with the unstoppable progression of my disorder, Friedreich’s ataxia (FA), for most of my life. Since there is no treatment or cure for FA yet, nothing stops it from ravaging me and sapping my abilities little…
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A big part of my experience as a late-onset Friedreich’s ataxia (FA) patient is the disease’s impact on my role as a mom. My life is action-packed from the minute my busy 6-year-old son and 4-year-old daughter wake up until the minute they go to sleep. Toddler life doesn’t pause…
There’s nothing quite like the realization that you aren’t following your own advice or philosophies about personal growth as well as you could be. At least, that’s the case for me right now. Yet again, I’m feeling grateful for this platform and the ability to write on a regular basis.
A few weeks ago, I fell and fractured my foot. The recovery process, thankfully, hasn’t been too painful. It has, however, been unexpectedly emotional. The truth is, I am not at all surprised that I fell. My Friedreich’s ataxia (FA) symptoms have been progressing quickly and felt insurmountable…
Hello, and may I be the first to wish you a happy fall! Of all the things I find pleasure in, pumpkins and changing leaves are close to the top. Even if fall isn’t your favorite season, I hope you can find some joy in the beauty that nature brings…
Despite using a walker 24/7, taking my clinical trial study treatment daily, getting ample rest, going to physical therapy weekly, working out daily, maintaining a balanced diet, and making safety modifications around my house, accidents happen. Especially with Friedreich’s ataxia (FA). We had friends over for dinner on the Sunday…
I recently wrote about finding value in allowing myself time and mental energy to contemplate my reality, especially the hard parts. I don’t remember exactly how this initially came up for me, but it’s been on my mind a lot lately. I’ve also begun to realize that there’s a…
Although I believed that the COVID-19 pandemic was beginning to wane, the delta variant has caused a huge increase in cases. Social distancing and mask mandates are on the rise again, much to my disappointment. The U.S. Food and Drug Administration’s current health guidelines aren’t very different from…
One of the most emotional and heartbreaking obstacles to overcome with a progressively degenerative disease like Friedreich’s ataxia (FA) is the use of mobility aids. I know the struggles firsthand because I’ve been entirely dependent on a walker for nearly three years. I’m very open about my journey with FA,…
“Are you sure you’ll be OK?” my three friends asked after they sat me on a picnic table, pen in hand and journal before me. It was 2006, and we were on spring break. The late afternoon sunlight wasn’t getting any brighter, and I knew they wouldn’t want me to…
It seems that the best time to plan ahead is always yesterday, or several hours ago. No matter how much thought or energy I put into planning ahead, it rarely seems sufficient. I suppose I should remember the alternative to not planning ahead at all; such a situation could easily…
Historically, Aug. 19 is a hard day for me. That’s the day in 2013 when I was blindsided by a Friedreich’s ataxia (FA) diagnosis. My emotional journey of advocating for myself to find answers to seemingly random neurological symptoms had reached a difficult, unexpected, and dramatic turning point. I was…
Recent Posts
- The ethics of time: Setting boundaries as a rare disease caregiver
- The power of smiling in life with Friedreich’s ataxia
- New gene therapy uses blood cells to deliver key Friedreich’s ataxia protein
- Friedreich’s ataxia places heavy daily burden on patients, caregivers: Study
- Living with FA has taught me the difference between pain and suffering