I was recently interviewed about my diagnostic journey. I am used to answering a lot of the questions but one stuck with me. It was a very simple ask: “Without mentioning Friedreich’s ataxia (FA), what do you do?” The thing is, almost every aspect of my life…
Columns
Friedreich’s ataxia (FA) is a cruel, degenerative genetic disease that attacks the central nervous system and deteriorates muscle coordination, strength, energy, and dexterity. It steals motor skills, making FA patients progressively more disabled. As an FA patient working my way through the symptom progression, I can tell you…
Editor’s note: This week’s column is co-authored by Kyle Bryant, founder of rideATAXIA, spokesman for for the Friedreich’s Ataxia Research Alliance, and co-host of the podcast “Two Disabled Dudes.” A few weeks ago, I wrote “I’m Confident rideATAXIA Dallas Will Happen in November,”…
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,” and “remain focused.” There are many ways of saying it but the message essentially supports one…
Columns
Seizing What I Can from Life
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 energy is constantly draining. With no approved treatments or cure, I have no tools to fight this inevitable deterioration of…
“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 pride and wonder. One of the treatments he uses is dry needling. Neither…
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 FA wipes me out emotionally, and I tend to be down for a few days afterward. Writing about it…
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 your battles and know when to fight or when to fold. That discernment takes maturity, strength, experience, and wisdom. Now…
“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 strange head-shaped contraption. I looked up at the mirror and saw the reflection of a bright…
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. Although we are halfway through 2020, I’m sure I’m not the only one…
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 rare, progressive, degenerative neuromuscular disease that few people have heard of, and even fewer are truly knowledgeable about.
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 echoed down the high school hallways, I knew what it…