Columns

To my dearest Lucia, By the time you are able to read and understand this, I am not sure what Friedreich’s ataxia (FA) will have done to my body, so this is kind of my “insurance policy” of life lessons and memories I want to offer you in 2019.

August is coming to an end. This is always my favorite time of year because my birthday rapidly approaches. To me, fall indicates a fresh start and signals new beginnings to look forward to. Tomorrow, Aug. 24, I will be turning 29 years old. It’s scary to think this is…

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…

The day I got my big idea, I received a package in the mail. Other than that, it was an average, unremarkable Tuesday.  Speaking of unremarkable, the package itself was just that — a thin, brown, rectangle of fraying cardboard, about the size of a throw…

I know I have to practice before it is reasonable for me to meet my expectations or achieve what I set out to accomplish. Although practice sessions can be tedious, time-consuming, and sometimes frustrating, the “routine” practice is commonplace. Routine practice…

One of the first things we did when we learned of our daughter’s Friedreich’s ataxia (FA) diagnosis was to make sure she had all the accommodations she needed in all areas of her life. Since she is still in school, this included working with teachers and administrators to come…

As a 27-year-old, I enjoy going out on the town with a couple of girlfriends. However, going out now takes a lot more effort than when I turned 21. When planning a night out, I assess my level of fatigue and decide which assistive device I need to…

Friedreich’s ataxia (FA) patients face multiple symptoms that can help confirm a diagnosis. The five most common symptoms are difficulty walking, sensory changes (such as hearing loss, involuntary eye movements, vision impairment, and speech problems), scoliosis, diabetes, and heart failure. FA patients are affected differently by these…

My mom took me and my 10-year-old nephew Andrew with her to the movie, probably because we were the only members of our family who wanted to see the 2019 remake of Disney’s “The Lion King.” Andrew wanted to see it because, well,…

In my previous column, I focused on the thought processes that prevent us from doing our best. This subject has been on my mind a lot recently. In a somewhat related vein, I wonder how I’m ever going to get good at…

I have been going back and forth about this column. But I think it’s important to show my readers and myself that I am being authentic, so here we go. Self-accountability is an everlasting process. Like cleaning out the junk drawer in the house, it can’t just be a…

There is nothing better than the feeling of the ocean air in my hair while I bask in the hot summer sun on a beautiful beach. I’ve just described my family’s happy place: Stone Harbor, New Jersey. We look forward to spending a weeklong vacation here every year. As a…