Playing Catch with Dad Despite My FA’s Progression
Those days were sticky hot. Or, at least, that’s how they are in my memory. I made my way to the backyard; the bright green of the summer grass gave off a…
Little Victories — Matthew Lafleur
Louisiana native Matthew Lafleur’s life isn’t what he expected following his 1994 diagnosis of Friedreich’s ataxia, a rare and debilitating disorder. Instead of giving up, he obtained degrees in English and mental health counseling. Unable to find a job after grad school, he applied to write a column at Friedreich’s Ataxia News. Years later, he now serves as the Associate Director of Patient Engagement for that site’s parent company, Bionews. Through his column and his role in patient engagement, Matt hopes to elevate the often overlooked voices of the rare disease population. We are not victims. We matter.
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From fumbles to fortitude: Learning to quiet my inner critic
Living with Friedreich’s ataxia (FA) involves daily challenges that often go unnoticed by others. Coordination, balance, and speech impairments may be brushed off as simple clumsiness, but the consequences can be more than…
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The Zeego Tales: Graduating Puppy College and Coming Home
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. Read the first installment here. My dad pushed me up the ramp and to the center…
My Cousin Served as My First Wheelchair
“Ready?” my cousin asked. “I guess,” I said halfheartedly, ashamed, and eager for this to be over. My cousin easily lifted me onto his back. I…
The Zeego Tales: Earning the Trust of My Service Dog
“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. It has never been my style to ask for help. Call me “strong-willed,” if you…
Louisiana FA Community Helps Ease Loneliness
“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old restaurant buzzed with the lunchtime rush, but the gathered members of the Louisiana FA community — five of…
Planning for My Unpredictable Future
“I can’t believe we found this,” I said to my friend Jennifer, holding the manila folder against my lap. “Do you think we should open it?” The sun shone brightly…
Little Victories Really Matter with FA
Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column. *** Despite all of…
Despite the Storm, rideATAXIA Dallas Was Worth It
My eyes shot open in the middle of a pleasant dream. The scene was familiar: There was a pool, perhaps a beach? But the dream vanished shortly after I woke…
Finding Friends, Family, and Vulnerability at rideATAXIA Dallas
On the long drive home from rideATAXIA Dallas, I asked the driver, my buddy Ryan, for his overall takeaway from our weekend trip. “I feel like I understand you and…
Because Saying ‘No, I Won’t’ Just Isn’t My Style
They couldn’t understand why I wouldn’t try, and my absolute refusal surprised me, too. Downtown Los Angeles in 2005 was unfamiliar to me, in a good way. It was a…
Waiting to Meet My New Service Dog
I first encountered a service dog accompanying a person with Friedreich’s ataxia (FA) three years ago. I had met my friend and fellow FARA ambassador Andrea and she had…
Consistency in the French Quarter with FA
My unharnessed wheelchair swerved unexpectedly. I reached out to grab onto something so that I wouldn’t flip over. Riding in the back of my former wheelchair-accessible van was…
