Author Archives: Kendall Harvey

A Springtime Perspective on What FA Has Given Me

I love springtime in Texas, and all that comes with it: baseball season, wildflowers, rodeo season, longer days, warmer sunshine, home projects, live music at local restaurants, and more. Everything feels happier and more vibrant. This year, springtime feels different. We had a historic and catastrophic snowstorm at the end…

How I Learned to Shine Rather Than Whine

I recently heard an interview with a local high school principal about the message he is sharing with his staff and students during these unprecedentedly hard times of COVID-19. In response to the pandemic, he said we can either “rise and whine or rise and shine.” How profound and…

How I Respond to Pity as a Friedreich’s Ataxia Patient

The word “pity” has a pretty negative connotation. I don’t know many people who seek pity or want to be pitiable. I certainly don’t aim to make people feel sorrow for my misfortunes. Yet, as I’ve become increasingly disabled by Friedreich’s ataxia (FA) since publicly announcing my diagnosis seven years…

The FA Community Needs Your Help to Advance a Potential Treatment

The Friedreich’s ataxia (FA) community has been abuzz with excitement recently. The first two phases of a clinical trial sponsored by Reata Pharmaceuticals showed that the oral therapy omaveloxolone (RTA 408) is safe and led to improvements in some participating patients. However, the U.S. Food and Drug Administration (FDA)…

Calming the Friedreich’s Ataxia Storm

Lately, I have been falling into a funk easily. All of the “little things” that bother me about life as a Friedreich’s ataxia (FA) patient seemed insurmountably huge and sucked all of my drive away. I didn’t feel joyful or enthused about much of anything except sleeping. So, I…

Acknowledging My Disability Is Empowering

I was diagnosed with Friedreich’s ataxia (FA) in 2013. At that point, I was still pretty “normal.” I could still do almost everything except walk in high heels or perform well in sports. I was independent and capable. After seven years of symptom progression, I am now disabled. I am…

I’m Thankful for So Much, Even With Friedreich’s Ataxia

2020 has been a wild year. Thanks to the pandemic, growing civil unrest, and a tumultuous and pivotal presidential election, we are all leading a life we didn’t anticipate or plan for. Add in a progressively degenerative disease like Friedreich’s ataxia (FA), which doesn’t pause to consider any external…

Friedreich’s Ataxia Has Taught Me a Lot

Before I was diagnosed in 2013, I had never even heard of Friedreich’s ataxia. I learned a lot during the diagnostic process as we assessed the viability of possible diagnoses to rule out. For example, I never knew there was such a thing as gluten ataxia, but I…

The Importance of Being Your Own Advocate

When it comes to your health and future, you are your own best advocate. Only you know what you are feeling, so only you know what is or isn’t “normal” for you. When I was 23, I began noticing that my balance was different than it used to be. I…

After Quarantine, I Am ‘the Disabled Mom’ Again

Given all of the uncertainty and unpredictability in the world, it is fairly safe to say that nearly everyone has had moments of frustration, fear, and disappointment. Life in Texas is getting back to normal, and our routines are crazy. We went from being quarantined in our house for over…

Let’s ‘Walk and Roll’ With Our Mobility Devices

As my Friedreich’s ataxia (FA) symptoms progress, I become increasingly dependent on assistance to walk and to generally function productively. When my symptoms first started, I was able to get by holding onto someone for support. I would loop arms with my husband, parents, or friends for extra balance.

I Have a Strange Relationship With Adrenaline

In my humble, nonmedical opinion, adrenaline is an amazingly complicated feature of the human body. It always seems to have tricky and unpredictable effects on my ever-changing Friedreich’s ataxia (FA) symptoms. Here’s why I think this: My late-onset FA began exhibiting symptoms that were worrisome enough that I began…

Acting Together to Cure Friedreich’s Ataxia

One of my favorite Friedreich’s ataxia (FA) quotes comes from Ron Bartek, co-founder and president of the Friedreich’s Ataxia Research Alliance (FARA). He said, “Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will not accomplish!” Getting diagnosed with…

If These Wheels Could Talk

We’ve all heard the phrase “if these walls could talk.” We guess about the secret conversations that have taken place in a room and wonder what it would be like if the walls could tell us the story. What celebrations, collaborations, conspiracies, or moments of genius have those walls witnessed?…

Informing Children About Friedreich’s Ataxia

They say there is no parenting handbook. There is no universal system or code that can set you up for foolproof success in raising your children to be confident and competent adults. As the mom of a nearly 6-year-old son and a 3-year-old daughter, I can certainly confirm that.

Feeling the 7-Year Itch With Friedreich’s Ataxia

I was diagnosed with Friedreich’s ataxia (FA) on Aug. 19, 2013. Before that day, I had never even heard of FA, let alone expected to think about this progressive, degenerative, life-shortening disease in any capacity. So much has happened since that day in August 2013, and my seventh…

Finding the Ideal Life Partner

When I was a young girl making a list of my “dream guy” qualities, it was probably like everyone else’s. I wanted him to be kind, handsome, smart, funny, nice to his family, hard-working, and my best friend. I met my dream guy in high school, and Kyle and…

Maintaining Abilities With Friedreich’s Ataxia

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…

I’ve Chosen to Be Intentionally Courageous

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,…

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…

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.

Fairy Tales, Dreams, and a Cure for FA

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,…

Choosing Hope Over Fear with Friedreich’s Ataxia

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…

Instagram vs. Reality with Mobility Aids

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…

Pros and Cons of Mothering with Friedreich’s Ataxia

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…

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…

Training a New Puppy Isn’t Easy, But It’s Worth It

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…

Journaling Helped Me Document My FA Progression

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…

I Have a Complex Relationship with Physical Therapy

I was an athlete until my mid-20s. I swam competitively for 14 years and was a cheerleader, a volleyball player, and an avid runner. My involvement in organized sports ended with my formal schooling. However, that didn’t stop me from keeping in shape. I went to the gym at least…