Friedreich’s Ataxia News Columns

September 17, 2021September 17, 2021

Learning How to Do ‘The Next Right Thing’

Friedreich’s Ataxia News Columns

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. ... Read more

September 16, 2021September 16, 2021

Taking Another Friedreich’s Ataxia Setback in Stride

Friedreich’s Ataxia News Columns

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 ... Read more

September 14, 2021September 14, 2021

Putting My Challenges Into Words Lightens the Load

Friedreich’s Ataxia News Columns

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 ... Read more

September 13, 2021September 13, 2021

Social Distancers and Rare Disease Patients Can Learn From One Another

COVID-19 Columns, Friedreich’s Ataxia News Columns

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 ... Read more

September 2, 2021September 2, 2021

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

Friedreich’s Ataxia News Columns

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 ... Read more

September 1, 2021September 1, 2021

How I Hiked Down the Grand Canyon in a Wheelchair

Friedreich’s Ataxia News Columns

“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 ... Read more

August 31, 2021August 31, 2021

Planning for Tomorrow Is Worth the Effort Today

Friedreich’s Ataxia News Columns

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 ... Read more

August 26, 2021August 26, 2021

Acknowledging the Anniversary of My Diagnosis

Friedreich’s Ataxia News Columns

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 ... Read more

August 20, 2021August 20, 2021

Let Them Try Out Their Wings

Friedreich’s Ataxia News Columns

Happy August! I don’t know about where you live, but here in Alabama, instead of waiting until after Labor Day, school starts early this month. While August doesn’t tend to ... Read more

August 19, 2021August 19, 2021

Feeling Like a Burden on Vacation Because of My Disability

Friedreich’s Ataxia News Columns

Last week, my family and I went to the beach with our neighbors for a fun end-of-summer getaway. We stayed in a precious beachside rental that had a room full ... Read more

August 18, 2021August 18, 2021

Sometimes I Just Want to Be Average

Friedreich’s Ataxia News Columns

Everyone could see me grimacing uncomfortably. “Here we go again,” I think as I feel an uneasy lump in my stomach. I find myself back in 1999 in a recurring, ... Read more

August 17, 2021August 17, 2021

Allowing Time to Contemplate My Disabilities Is Helpful

Friedreich’s Ataxia News Columns

If you’re anything like me, you spend a lot of mental energy thinking about “what might be” and dreaming about “what could be.” I’ve always had big aspirations, and I ... Read more

August 5, 2021August 5, 2021

Slow and Steady Doesn’t Always Win the Race

Friedreich’s Ataxia News Columns

One of the most frustrating effects of the progression of my Friedreich’s ataxia (FA) symptoms is how slow I’ve become lately. Physically, I do everything more slowly. Not only am ... Read more

August 4, 2021August 4, 2021

rideATAXIA Philadelphia, FA Symposium Offer Opportunities to Connect, Raise Funds

Friedreich’s Ataxia News Columns

“Man, I didn’t realize how great it feels to be in the same room with friends,” I thought late one night as my friends Kayla and Mike were leaving. I ... Read more

July 29, 2021July 29, 2021

Navigating Hope and Worry With Friedreich’s Ataxia

COVID-19 Columns, Friedreich’s Ataxia News Columns

The word “hope” has been woven through many of my conversations lately, especially in the last week. I’m participating in a clinical trial, and I had my first in-person visit ... Read more