Friedreich’s Ataxia News Columns

July 14, 2020July 14, 2020

Stay on Point and Avoid Distractions

Friedreich’s Ataxia News Columns

An underlying principle keeps revealing itself to me through many different things. I’ve heard the principle said in multiple ways, namely phrases such as “stay the course,” “stay on mission,” ... Read more

July 9, 2020July 9, 2020

Seizing What I Can from Life

Friedreich’s Ataxia News Columns

Friedreich’s ataxia (FA) is a progressively degenerative neurological disease. It targets almost every aspect of my body, especially coordination, balance, dexterity, and energy. My abilities are slowly diminishing, and my ... Read more

July 8, 2020July 8, 2020

Gaining Perspective As I Learn to Tolerate Needles

Friedreich’s Ataxia News Columns

“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix of ... Read more

July 6, 2020July 7, 2020

Reflections on the Joys of Parenting an FA Teen

COVID-19 Columns, Friedreich’s Ataxia News Columns

It’s been a while since I have had the courage to write a column. I don’t want to seem melodramatic, but the vulnerability of sharing about parenting a child with ... Read more

July 2, 2020July 6, 2020

Growing Bigger Than Friedreich’s Ataxia

Friedreich’s Ataxia News Columns

People respond to adversity in many different ways. You can rise to the challenge or crumble under its weight. You can push through or bail. Sometimes, you have to pick ... Read more

July 1, 2020July 1, 2020

A Vision Test Helped Me See the Need for Self-care

Friedreich’s Ataxia News Columns

“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into a ... Read more

June 30, 2020July 1, 2020

I Can’t Live in the Past, but Can’t Ignore It Either

Friedreich’s Ataxia News Columns

A year ago, I wrote about the yearly calendar’s halfway point being a great time to check in on my annual goals and the routines I employ to accomplish them. ... Read more

June 25, 2020June 25, 2020

Behind Closed Doors: Why I Share the Reality of FA

Friedreich’s Ataxia News Columns

I am an open book about most areas of my life. I’ll answer just about any question I am asked, even questions about my Friedreich’s ataxia (FA). FA is a ... Read more

June 24, 2020June 24, 2020

Now Is All We Have, and Sometimes That’s Enough

Friedreich’s Ataxia News Columns

The clanky metallic sounds are what I remember most.  Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that sound ... Read more

June 22, 2020June 23, 2020

Questions for a Future Personal Trainer With a Neuromuscular Disease

COVID-19 Columns, Friedreich’s Ataxia News Columns

In my previous column, I announced I was becoming a certified personal trainer. I understand there may be curiosity around my decision. I also want to clarify things for future ... Read more

June 18, 2020June 18, 2020

How I’ve Adapted to Being Disabled in an Able-bodied World

Friedreich’s Ataxia News Columns

Before I developed symptoms and then was diagnosed at 25 with Friedreich’s ataxia (FA), a progressive and degenerative disease, I was healthy, active, and able. Since my symptoms progressed, I ... Read more

June 17, 2020June 18, 2020

Rolling Toward Empathy

Friedreich’s Ataxia News Columns

About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this house-turned-business ... Read more

June 15, 2020June 15, 2020

I’m Kicking My Health Education Into Hyperdrive

COVID-19 Columns, Friedreich’s Ataxia News Columns

One of the biggest lessons I have learned this year is to sit back and genuinely listen. I was usually the type to insert myself in situations that didn’t apply ... Read more

June 11, 2020June 12, 2020

Fairy Tales, Dreams, and a Cure for FA

Friedreich’s Ataxia News Columns

When you are the parent of kids ages 5 and 3, you read lots of fairy-tale books and watch countless Disney movies. You become part of the wonderful stories and ... Read more

June 10, 2020June 11, 2020

I’m Confident rideATAXIA Dallas Will Happen in November

COVID-19 Columns, Friedreich’s Ataxia News Columns

The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks for ... Read more