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.
My Darling Disability - a Column by Kendall Harvey
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…
I am the proud mother to two children: my 5-year-old son and my nearly 3-year-old daughter. We just celebrated Mother’s Day last weekend. My family always does a wonderful job of making me feel loved and cherished. Annual celebratory events tend to turn me introspective. All weekend, I was…
Columns
It’s OK to Ask Me About FA
The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I have an additional big thing: Friedreich’s ataxia. Before I was diagnosed with FA in 2013, I was just like…
Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA patients. An integral part of my efforts to make a real difference is the event rideATAXIA. rideATAXIA takes place…
I’m always alarmed when I notice the progression of my Friedreich’s ataxia (FA) symptoms, which highlight the harsh reality of my progressive neurological disease. Recently we got a new puppy, and training her has highlighted my FA progression. The last time I had a puppy was 2008. I got…
One of the harsh realities of life with Friedreich’s ataxia is falling. That was my first major symptom and a red flag. I knew something was wrong because I was falling more than I did previously, and it happened more frequently than the average person my age. I am participating…
Recent Posts
- Recovering from a fractured bone takes an emotional toll
- Early-onset FA tied to greater relationship challenges in later stages
- How Friedreich’s ataxia blurred my personal and professional missions
- Putting mind over matter minimizes FA’s impact on my life
- Partnership aims to automate production of ataxia cell therapy