Columns

Since my diagnosis with Friedreich’s ataxia (FA), I have learned something about myself. I realize that when making plans, I must consider my needs, including accessibility, and I try to help other people understand, too. When I arrange an outing with my family or friends, I easily become anxious and…

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. The day Zeego decided to make a break for it, the autumn air was unseasonably warm. I should have noticed that something strange was about to happen. But in the moment, I expected an…

I’ve been contemplating a metaphor of sorts, inspired by festivities of my family’s holiday traditions. I’m not sure if this is a thought process I’ll cling to very deeply, as it’s still new to me. However, I wanted to write about it now and invite you along on…

According to authors Elisabeth Kübler-Ross and David Kessler, people go through five stages of grief after losing a loved one or experiencing a catastrophic life event. The stages are denial, anger, bargaining, depression, and acceptance. When our daughter was diagnosed with Friedreich’s ataxia (FA), I began a grieving…

Every fall, I find myself being thankful for my family and friends and hoping that they are in good health. I am also grateful for the relationships I have with other Friedreich’s ataxia (FA) patients and their families. These individuals leave me full of gratitude, not only because they teach…

Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is a magical month full of joy. It’s hard not to notice the progression of my Friedreich’s ataxia (FA) symptoms during the holiday season. I have vivid…

­ It was a good day at physical therapy. I was exhausted from doing leg, arm, and back stretches with the help of my physical therapist. I sat up on the matted floor, legs stretched out in front of me. “Look,”…

It has always been a challenge for me to remain in the present. I frequently reminisce about the past and think about what I should have done. Does your brain remind you of your embarrassing moments when you are about to fall asleep? Same with…

I took off the hood that blacked out my vision and covered my face. My friend Ryan and I were in a dimly lit room. We had 60 minutes to reunite with our friends and figure out how to unlock the exit. When time was up,…

I recently wrote about my gratitude for the people I’ve been privileged to meet and build friendships with since my Friedreich’s ataxia (FA) diagnosis. My frame of mind when writing that column was affected by the outpouring of love and well wishes…

“It is time,” I thought to myself. A number of loved ones had presented the idea of transitioning from a rollator to a wheelchair out of concerns for my safety. But I believe it’s a decision that should be made by the patient. Recently, I came to terms with the…

“The Zeego Tales” track the wonders of my life with my service dog, Zeego. I am in my new standing frame, clumsily clicking on my laptop’s keyboard. Zeego, my service dog, is sleeping beneath me. The shades are open in my bedroom and sunlight is flooding in,…