I’m spending a couple days on the road right now, sharing some of my story and philosophies at a fundraiser. This is the first in-person event I’ve participated in since friends at Amicus Therapeutics invited me and my podcast co-host, Kyle Bryant, to their office in…
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Hello, everyone! I am so grateful you are taking a few moments of your day to join me here. I hope you can spend some time reflecting on happier days in the past and looking ahead toward a brighter future. Even if your current reality feels overwhelming, please know that…
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…
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