Columns

Will We Ever Accept FA?

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…

Battling ‘Mobility Envy’ as My FA Symptoms Progress

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…

Stay on Point and Avoid Distractions

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…

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…

Growing Bigger Than Friedreich’s Ataxia

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…

Behind Closed Doors: Why I Share the Reality of FA

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.