If life with Friedreich’s ataxia (FA) were charted through a GPS navigation system, it would constantly say “recalculating.” The relentlessly progressive nature of this disease affects all areas of my life, both expectedly and unexpectedly, bringing changes to both path and destination. Before my ankle break and reconstructive…
“This isn’t a good start to the trip,” I thought while trying not to topple to the floor. I’d missed my wheelchair seat while trying to transfer into it. I was at the Lafayette Regional Airport in Louisiana, and the only bathroom beyond the security checkpoint wasn’t even close…
The first thing I experienced after my Friedreich’s ataxia (FA) diagnosis in 2013 was fear for my future. I remember reading words like “wheelchair-bound,” “terminal,” and “average life expectancy of 35.” That meant I had already lived more than half of my life. And while my first 25 years had…
It’s peculiar how much of life occurs in cycles. One day I feel like I’m on top of the world, and a week later I’m lying in bed due to exhaustion or sickness. One day I feel like I’ve learned so much and am excited to earn my degree, and…
Last weekend, I had an old experience in my new, disabled body. I went to a wedding. Most of my friends are in the “married and having babies” phase of life, so I haven’t been to a wedding in about four years — before I was dependent on a mobility…
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…
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…
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