Columns

I No Longer Let Fear of the Future Control My Life With FA

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…

Coyotes, Roadrunners, and a Cure for My Rare Disease

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…

Friedreich’s Ataxia Forces Me to Be a Spectator Mom

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…

Learning to Grow Through What I Go Through With FA

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…

Learning How to Do ‘The Next Right Thing’

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…

Taking Another Friedreich’s Ataxia Setback in Stride

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…

Putting My Challenges Into Words Lightens the Load

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…

I Overcame My Hesitancy to Use Mobility Aids, and You Can, Too

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,…