Columns

This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the underbelly of the LSU football stadium, known by Tiger fans as Death Valley. As I rolled through the Valley of Death, the lump in…

I recently saw a news article about a bridal store in England that not only made a positive impact on one future bride’s life but also on others’. The White Collection Bridal Boutique displayed a mannequin in a wheelchair while wearing a wedding dress. Someone posted a photo of it on…

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…

Bionews Services is launching a new project on Jan. 22: the Friedreich’s Ataxia News Forums. This will be a place for all of those affected with FA — patients, caregivers, family members, close friends, and significant others — to sign up, post, and comment on messages about…

By the time you read this column, I hope to be celebrating a win for the Los Angeles Rams over the Dallas Cowboys — my favorite football team will move one step closer to the Super Bowl. Even if they lose the game, the team has had an…

Everyone has a morning routine, a plan that sets the mood for the day. Most people become so used to the regimen that they carry out tasks on autopilot. However, when living with a rare, neuromuscular disorder such as Friedreich’s ataxia, the routine can become irregular and require additional concentration,…

Spoiler alert: In this column, I’ll review the popular Netflix movie “Bird Box.” I explore the movie’s ending. If you like suspenseful sci-fi movies, I recommend watching it first, then returning to this column. Be aware that the movie plot includes mass suicides. *** Across…

Let the New Year’s resolutions and “fresh start” cliches pour in to overwhelm timelines and news feeds. Ringing in the new year has always been a favorite time of mine — the energy shifts. Many people, including me, desire to change and become “better.” When thinking about resolutions, I…

An approaching new year means multiple things to different people. A new year can mean starting over or aspiring to new goals or resolutions. It is an appropriate time to be happy and to seek a fresh start to be the best version of yourself. Regarding life with Friedreich’s ataxia,…

“What’s your resolution?” This time of year, redefinition is almost a buzzword. Resolutions and goals are a hailstorm assault on social media. As the calendars mark another complete orbit around the sun, the timing seems perfect to redefine yourself, to create a better…

Let’s talk about what to do during the “calm before the storm.” And no, I am not talking about going to the grocery store during the holidays to fight through fanatical crowds for butter, milk, and eggs. I am talking about how to take advantage of calm days to prepare…

Writing this column has really been a joy for me. A significant source of worry with a progressive disorder like Friedreich’s ataxia (FA) is the difficulty of finding a job. As my physical abilities lessen, my job prospects shrink. It would seem like…