Columns

Marriage is wonderful, but it comes with challenges. When one partner has Friedreich’s ataxia (FA), the challenges may be overwhelming. Now imagine the second partner also lives with a chronic illness. My husband, Justin, has Fabry disease. Like FA, Fabry is a rare genetic disorder. It results in a…

Before I knew it, I was face down on the tiled floor. When I started to fall forward, seated in the handicapped-accessible shower, my arms made a last-ditch effort to grab onto the bench.  This plan failed. Without my arms to impede my crash, my forehead…

I’ve been thinking about the “bare minimum” in the context of guest or customer service. Many companies would argue that their success, or a healthy amount of it, is due to the extraordinary service they provide their patrons. This makes sense. In a world of plenty…

We made it! A new decade is here, and the atmosphere seems a little fresher. For now, at least. I hope everyone enjoyed their holidays and spent them however you wanted to, with or without family. My previous columns about the new year consisted of sharing my plans for…

Many people aren’t aware of how sensitive people with Friedreich’s ataxia (FA) can be about using a mobility aid. I struggle with feeling like a “minority” in society by standing out and looking different, so when people throw out negative words and actions, I feel awful about…

I was grateful to be around my large extended family at our yearly Christmas party. Zeego, unleashed in the huge building where the festivities took place, sniffed beneath the rows of white plastic tables. I had hoped that he would bring some holiday…

The start of a new year always seems to bring new goals and commitments. I’m sure you’ve thought about a thing or two, or have created a long list of resolutions for 2020. Whether we’re talking about specific actions such as exercising three times a week, or vague…

It’s the end of a decade and the beginning of a new year. At this time, many of us make New Year’s resolutions and set our goals for the year ahead. In the past, I have made resolutions that weren’t realistic or achievable; whether it was losing a lot…

Happy New Year! I hope all my readers had a great holiday with their loved ones and are ready for 2020. I had three main goals for 2019 regarding the progression of my Friedreich’s ataxia (FA): accept help when needed; know that my disease is in…

It’s the most wonderful time of the year! Isn’t that what everyone is singing and saying? Christmas music is playing wherever you go, houses are decorated with lights, and the aroma of wood fires fills the cold, winter air. It is also a time of gift-giving, marketing campaigns, parties, and…

I learned a new word this year: “mFARS,” which stands for the modified Friedreich’s Ataxia Rating Scale. The mFARS measures the overall effect of Friedreich’s ataxia (FA), rating abilities such as upper body function, lower body function, speaking, and swallowing.  Unaffected functioning scores a zero on…

I grew up as a picky eater. I was very “basic” in what I liked: graham crackers, mac and cheese, pizza, and popcorn. I didn’t dare venture out to vegetables or anything remotely green. And kettle corn is still nasty. If you were to ask me to share…