Columns

August 6, 2020July 31, 2020

Is the Grass Greener Without Friedreich’s Ataxia?

Columns, My Darling Disability - a Column by Kendall Harvey

I keep thinking about the saying “the grass is always greener on the other side.” This is usually thrown around when you wish for something. We get it set ... Read more

August 5, 2020August 3, 2020

First I Swim, Then I Drown, Now I Float

Columns, Little Victories - a Column by Matthew Lafleur

I remember getting to the pool early one summer morning before swimming lessons began. I wasn’t a swim teacher per se; I was more of a teacher’s assistant. The ... Read more

July 30, 2020July 28, 2020

Maintaining Abilities With Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

July 29, 2020July 27, 2020

Even Though My Body Is Failing, I’m Not Hopeless

Columns, Little Victories - a Column by Matthew Lafleur

“Well look at that,” the doctor remarked, obviously impressed. The wonder in his voice made me grin a little bit. Any positive physical change with progressive Friedreich’s ataxia is a ... Read more

July 28, 2020July 24, 2020

Push to Get the Results You Want

Columns, No Good Excuse - a Column by Sean Baumstark

I’m confident we can all agree: We have no idea what tomorrow may hold. Whether we are talking about the stock market, our individual health, or simply the weather, ... Read more

July 23, 2020July 21, 2020

I’ve Chosen to Be Intentionally Courageous

Columns, 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. ... Read more

July 22, 2020July 20, 2020

Why I Choose to Use a Wheelchair

Columns, Little Victories - a Column by Matthew Lafleur

My alarm goes off at 6 a.m. I open my eyes to my service dog, Zeego, who still has his eyes closed. He is definitely not ready to get ... Read more

July 20, 2020July 28, 2020

Will We Ever Accept FA?

Columns, Fighting FA - a Column by Frankie Perazzola

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: ... Read more

July 16, 2020July 14, 2020

Battling ‘Mobility Envy’ as My FA Symptoms Progress

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

July 15, 2020July 14, 2020

Kyle Bryant Announces the First-ever Virtual rideATAXIA Global Challenge

Columns, Little Victories - a Column by Matthew Lafleur

Editor’s note: This week’s column is co-authored by Kyle Bryant, founder of rideATAXIA, spokesman for for the Friedreich’s Ataxia Research Alliance, and co-host of the podcast “Two Disabled Dudes.” ... Read more

July 14, 2020July 10, 2020

Stay on Point and Avoid Distractions

Columns, No Good Excuse - a Column by Sean Baumstark

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 ... Read more

July 9, 2020July 7, 2020

Seizing What I Can from Life

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

July 8, 2020July 6, 2020

Gaining Perspective As I Learn to Tolerate Needles

Columns, Little Victories - a Column by Matthew Lafleur

“Forty needles! I think that’s a record over here!” I was lying on my stomach on the adjustable table as my physical therapist said this with a laughable mix ... Read more

July 6, 2020July 31, 2020

Reflections on the Joys of Parenting an FA Teen

Candy Shell Life - a Column by Lauryn Smith, Columns

It’s been a while since I have had the courage to write a column. I don’t want to seem melodramatic, but the vulnerability of sharing about parenting a child ... Read more

July 2, 2020June 30, 2020

Growing Bigger Than Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

July 1, 2020June 29, 2020

A Vision Test Helped Me See the Need for Self-care

Columns, Little Victories - a Column by Matthew Lafleur

“Look at the mirror on the wall. Can you tell me what letters you see?” I sat there in the darkened optometrist’s office with my face pressed forward into ... Read more

June 30, 2020June 26, 2020

I Can’t Live in the Past, but Can’t Ignore It Either

Columns, No Good Excuse - a Column by Sean Baumstark

A year ago, I wrote about the yearly calendar’s halfway point being a great time to check in on my annual goals and the routines I employ to accomplish ... Read more

June 24, 2020June 23, 2020

Now Is All We Have, and Sometimes That’s Enough

Columns, Little Victories - a Column by Matthew Lafleur

The clanky metallic sounds are what I remember most. Pap-pap! And then a small sound of straining as someone’s body weight shifts as they are dragged forward. Whenever that ... Read more

June 22, 2020June 18, 2020

Questions for a Future Personal Trainer With a Neuromuscular Disease

Columns, Fighting FA - a Column by Frankie Perazzola

In my previous column, I announced I was becoming a certified personal trainer. I understand there may be curiosity around my decision. I also want to clarify things for ... Read more

June 18, 2020June 16, 2020

How I’ve Adapted to Being Disabled in an Able-bodied World

Columns, 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, ... Read more

June 17, 2020June 12, 2020

Rolling Toward Empathy

Columns, Little Victories - a Column by Matthew Lafleur

About a decade ago, I read a local news report about a pizzeria being taken to court because it was inaccessible to people with disabilities. Opened in 1990, this ... Read more

June 15, 2020June 15, 2020

I’m Kicking My Health Education Into Hyperdrive

Columns, Fighting FA - a Column by Frankie Perazzola

One of the biggest lessons I have learned this year is to sit back and genuinely listen. I was usually the type to insert myself in situations that didn’t ... Read more

June 11, 2020June 8, 2020

Fairy Tales, Dreams, and a Cure for FA

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

June 10, 2020June 8, 2020

I’m Confident rideATAXIA Dallas Will Happen in November

Columns, Little Victories - a Column by Matthew Lafleur

The original date for this year’s rideATAXIA Dallas was March 28. This would have been my fourth year participating in the event. RideATAXIA is a day of bike treks ... Read more

June 4, 2020June 2, 2020

Choosing Hope Over Fear with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

June 3, 2020June 1, 2020

Reconciling with My Past, My Self, My Dream

Columns, Little Victories - a Column by Matthew Lafleur

I’ve been thinking a lot about identity lately. Who am I to myself? To others? Is Friedreich’s ataxia fundamental to who I am? Would I still be me without ... Read more

May 28, 2020May 26, 2020

Instagram vs. Reality with Mobility Aids

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

May 20, 2020May 18, 2020

Learning to Shift from ‘I’ to ‘We’

Columns, Little Victories - a Column by Matthew Lafleur

It doesn’t make sense to be this fragile, I thought, as my stomach dropped and I wanted to … fight? Punch a wall? Sob? I had no logical reason ... Read more

May 14, 2020May 12, 2020

Pros and Cons of Mothering with Friedreich’s Ataxia

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

May 13, 2020May 11, 2020

Playing the Cards We’ve Been Dealt

Columns, Little Victories - a Column by Matthew Lafleur

The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month. I gazed out my van’s windows as tree ... Read more

May 11, 2020May 8, 2020

Raise Awareness by Joining the ‘Lend Us Some Muscle’ Campaign

Columns, Fighting FA - a Column by Frankie Perazzola

May is an exciting time for the FA community. It’s Friedreich’s Ataxia Awareness Month, a time for all of us who are affected to let our voices be heard! ... Read more

May 7, 2020May 6, 2020

It’s OK to Ask Me About FA

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

May 6, 2020May 4, 2020

Parallels Between 2018’s ‘Bird Box’ and the Coronavirus Pandemic

Columns, Little Victories - a Column by Matthew Lafleur

About a year ago, I wrote a “Little Victories” column about the 2018 Netflix movie “Bird Box.” I was struck by its message that people with disabilities were best ... Read more

April 30, 2020May 5, 2020

This Year’s rideATAXIA Was Postponed, but We’re Not Giving Up

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

April 29, 2020April 27, 2020

Choosing Our Own Identity

Columns, Little Victories - a Column by Matthew Lafleur

On an otherwise typical day of my self-quarantine, I careened to the side of my wheelchair and couldn’t stop. I wasn’t sure if the culprit was a coughing fit ... Read more

April 28, 2020April 24, 2020

Life Is Fragile, So Handle with Care

Columns, No Good Excuse - a Column by Sean Baumstark

As I write this, I just received word that a friend and co-worker passed away in his sleep last night. Unbelievable shock consumed me for several moments. My friend ... Read more

April 22, 2020April 20, 2020

The Zeego Tales: A Little Something Extra

Columns, Little Victories - a Column by Matthew Lafleur

Focusing on times of plenty and excess amid the COVID-19 pandemic seems foreign, or even rude. However, this calamity and all the pain it’s wrought cannot be all we ... Read more

April 20, 2020June 10, 2020

Healthy Distractions and Keeping Busy

Columns, Fighting FA - a Column by Frankie Perazzola

During this pandemic, one of my most important goals is to keep busy and throw in any available distractions. I need to keep my mind from dwelling in negativity. ... Read more

April 16, 2020April 14, 2020

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

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

April 15, 2020April 13, 2020

Keeping a Homebound Physical Therapy Routine

Columns, Little Victories - a Column by Matthew Lafleur

I’m really fortunate. My life hasn’t undergone a drastic change even though I’ve rarely left my house in three weeks because of the COVID-19 pandemic. I work remotely and ... Read more

April 14, 2020April 6, 2020

Remembering What Matters During the Pandemic

Columns, No Good Excuse - a Column by Sean Baumstark

As the impact of COVID-19 continues to loom over the globe, our concerns and worries seem to increase as well. What started for many as an issue in some ... Read more

April 2, 2020March 30, 2020

Journaling Helped Me Document My FA Progression

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

April 1, 2020March 30, 2020

My Family’s Legacy Is Centered on Grandma’s Cajun Food

Columns, Little Victories - a Column by Matthew Lafleur

Long before COVID-19, a little girl named Eula walked to the end of the road to catch a school bus. It was 1935, so her bus ride to the ... Read more

March 25, 2020March 23, 2020

Thank You for Your COVID-19 Response — from a Rare Disease Patient

Columns, Little Victories - a Column by Matthew Lafleur

It’s finally happened: the first outbreak within my parish (or “county” for you non-Louisiana folk) has been reported at the time of writing this column. While this pales in ... Read more

March 24, 2020March 23, 2020

Don’t Forget About Self-care During the Pandemic

Columns, No Good Excuse - a Column by Sean Baumstark

There’s never a “good time” for the world to face a pandemic, or for a region or community to deal with such a significant threat to our health and ... Read more

March 23, 2020March 20, 2020

What We Can Take Away from the Coronavirus Pandemic (So Far)

Columns, Fighting FA - a Column by Frankie Perazzola

In times like these, I wish I had superpowers or a magic wand to make everything better. The fear and panic caused by the coronavirus pandemic are taking a ... Read more

March 19, 2020March 18, 2020

I Have a Complex Relationship with Physical Therapy

Columns, My Darling Disability - a Column by Kendall Harvey

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 ... Read more

March 18, 2020March 18, 2020

My Physical Therapy Progress: Mastering the Dead Man’s Crawl

Columns, Little Victories - a Column by Matthew Lafleur

At my latest physical therapy appointment, I was out of my wheelchair and on the floor mats, struggling to maintain a “table” position. Mastering that position is the beginning ... Read more

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