With Friedreich’s ataxia (FA), I am used to the reality that my abilities are progressively deteriorating. I am losing coordination, dexterity, cellular energy, and strength every single day. I am all too aware of the ticking clock that has started the countdown on my ability to do just about…
My Darling Disability - a Column by Kendall Harvey
Friederich’s ataxia (FA) has taught me a lot about intentionality. As an FA patient, I must be intentional both physically and emotionally to function at the capacity I desire. I used to take my physical abilities for granted before my FA symptoms started. I practiced hard at swimming,…
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…
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…
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…
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.
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 no longer am “able,” at least not without assistance. Being disabled was not part of my plans for…
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 see hardworking ladies becoming princesses, toys saving the day, friendships defying the odds, families overcoming adversity, romances growing stronger,…
Friedreich’s ataxia is a daunting, life-altering diagnosis. It changes every aspect of your life, especially as your disease progresses. It changes your ability to do the things that once came easily, and takes away your ability to do the things your peers can do without thinking twice. I…
Because of my Friedreich’s ataxia (FA), I use a walker as a mobility aid. The walker helps provide the stability that I can’t accomplish on my own, which helps prevent falls. My walker is with me wherever I go, so I am pretty well-known for being “the mom…
Recent Posts
- Scientists link shrinkage of key brain pathway to FA motor symptoms
- My to-do list always looms, but self-compassion helps me manage
- How FA influenced our decision when it was time to buy a car
- I shed the ‘How does she do it?’ dream to be a helpful person who needs help
- New FA drug nomlabofusp on track for US filing in June seeking its approval