Our family has the good fortune to spend summers at a beautiful lake in central Alabama. For the past nine years, my in-laws have had a summer home and they’ve graciously invited the entire family to gather there each weekend. Since the lake is less than an hour from home,…
Columns
For those of you who continue reading my columns, thank you for sticking with me. To those of you who are new, welcome to “Fighting FA.” I’m glad to have you here and appreciate the time you take to read my writing. I know that…
I am originally from Bucks County, Pennsylvania, about 25 miles outside of Philadelphia. This beautiful area combines countryside with villages and downtown charms. It is rich in history, art, and culture, with gourmet dining, breweries and wineries, and award-winning accommodations. When I describe the area to people, I classify it…
“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 remember thinking how strange it was to be carried around by another high school senior, but…
I recently visited my neurologist and FA clinical team at UCLA. I am participating in a clinical trial, and UCLA is my nearest study site. Oftentimes, clinical trials are “blind” and placebo-controlled, meaning multiple patient groups take an investigative therapy or…
“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 want to put a positive spin on it, or “stubborn,” to be more accurate. …
I was sitting on a plane yesterday thinking about some of my deadlines when I recognized that I was feeling overwhelmed and exhausted. While I wasn’t frustrated and my level of functioning wasn’t affected, I noticed that I was tired and feeling as if time was getting away…
When I have an initial conversation with someone about my FA diagnosis, the person almost always asks, “Are you in pain?” At first, I didn’t experience any pain whatsoever. Later, I started having restless legs and sporadic, debilitating foot cramps after the days I pushed a little too…
After months of planning and executing, my family’s grassroots event, the 7th Annual Mother’s Day 5K Race for Christina, took place last Sunday, May 12. Two months ago, I wrote the column, “How to Plan a Grassroots FA Event,” which includes our planning checklist. My family and I…
Columns
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.”…
“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 us affected by Friedreich’s ataxia, along with those who had traveled with us — managed to…
Columns
On Being a Bridesmaid for a Day
I remember feeling overjoyed and honored a year ago after I received a package in the mail. It was a small box containing beautiful gold-knot post earrings and a note that said, “Will you be my bridesmaid?” It was from one of my closest friends, Erica. Without a second thought,…
Recent Posts
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