Author Archives: Kendall Harvey

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…

Navigating the Holidays with Friedreich’s Ataxia

Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is a magical month full of joy. It’s hard not to notice the progression of my Friedreich’s ataxia (FA) symptoms during the holiday season. I have vivid…

The Pros and Cons of Using a Walker

As a Friedreich’s ataxia (FA) patient, I use a walker 95 percent of the time. FA interferes with my balance and coordination, so my walker prevents falls by providing something stable to hold on to. Rationally, adjusting to a mobility aid was easier than I thought. For me, it…

Donning My Friedreich’s Ataxia Hat

I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. This hat is too big, ugly, and dominating. I don’t feel like myself in it. It doesn’t feel right on…

Wishing Away Friedreich’s Ataxia

Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute. I don’t want to have FA. I want to be “normal.”…

Navigating Curious Kids and Friedreich’s Ataxia

As a mom, I am obviously around kids all the time. But not just my own. I am around kids when I take my children to school, T-ball, church, play dates, restaurants with playgrounds, etc. I encounter countless kids each week. As an FA patient dependent on a mobility…

Austin Knows How to Treat People with Disabilities

Earlier this year, I was extremely nervous about using my walker in public. Previously I had been able to “hide” the effects of my Friedreich’s ataxia (FA). I used shopping carts, friends, or strollers for stability. However, my FA progressed to the point that I needed more…

What Fundraising Means to Me

I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when Ellen DeGeneres has handed a life-changing check to a single parent or a disabled child. I become fascinated with their…

Becoming Dependent Restored My Independence 

One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing a device to get around in my day-to-day activities was soul crushing. I thought that it signified the…

When Life Hands You Lemons

“Life isn’t fair.” “No one said this would be easy.” We have all heard these platitudes and we’ve all repeated them. And yes, there is truth in these well-worn phrases: Life is hard, messy, emotional, and unexpected, and it’s also predictable, inevitable, and complicated. But it can be…

A Friedreich’s Ataxia Explainer

Describing a progressive genetic disease like Friedreich’s ataxia (FA) is difficult. It has a wide range of symptoms, most of which are unique to FA and not easily understood unless you have firsthand experience or a loved one with the condition. In this column, I will address some…

How Friedreich’s Ataxia Redefined My Faith

I grew up in a church-going family that was always involved in ministry. We spent at least three days a week at church. I had a sound knowledge of Christianity, the Bible, and what it meant to be a Christ follower. I felt invincible when I was close…

My Journey to a Friedreich’s Ataxia Diagnosis, Part 3

Third and final in a series. In a previous column, I discussed the tests I underwent to diagnose Friedreich’s ataxia. “Kendall, I was afraid that this might be the case: You have Friedreich’s ataxia.” My doctor looked as shellshocked as us. He studied Friedreich’s ataxia (FA) in his…

I’ve Adopted the Concept of ‘Besides FA’

I recently began participating in a 48-week, Phase 2 clinical trial for Friedreich’s ataxia. The way I understand it, the study’s investigational treatment is designed to make the cells in my body that are damaged by FA work more efficiently, or more normally. I’m hopeful that this can slow…

New to Friedreich’s Ataxia?

  The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was in shock is an understatement. I was scared, overwhelmed, confused, angry, eager, and desperate. So, I am going to try…

I’m Not Yet Sure How to Fight My Fatigue

Friedreich’s ataxia causes a wide array of symptoms. Every FA patient experiences the disease differently. For me, fatigue is a major symptom. Before I experienced FA, I thought I understood what “fatigued” meant — being really tired. Boy, was I wrong. Oxford Dictionary’s definition of tired is:…

Seasons of Life with Friedreich’s Ataxia

Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the mental and emotional stress has surprised me. It is a factor in almost all of my…

The Emotional Workout of Physical Therapy

In Friedreich’s ataxia (FA) care, we don’t really have treatment options. There are clinical trials taking place to work on treatments and hopefully one day, a cure. But until then, we are left at the mercy of this progressive, degenerative disease. Wow. That is heavy. And disheartening. The…

My Big (Literal) Break

Editor’s note: This post includes images of a bone break that may be disturbing to readers. For some time now, I’ve needed to use a walker (or another mobility aid). My physical therapist, Kelli, has been encouraging me to use my rollator around the house. It is…

Fight or Flight in FA Patients

Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By definition, the fight-or-flight response is a physiological reaction that occurs in response to a perceived harmful event, attack, or threat to survival. Friedreich’s ataxia (FA) patients have to choose to fight every single day.

What rideATAXIA Means to Me

Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel very isolating. My immediate family and I had never even heard of FA until my diagnosis in 2013. When we started telling family and friends about this disease, my aunt remembered seeing a…