Columns

Living happily with limb-girdle muscular dystrophy, as I do, requires patience, a positive attitude, and a good support system of family, friends, and a professional care team. But I’ve learned there’s another huge component for me to succeed: planning. Abilities that able-bodied people take for granted often require well-thought-out…

I am going at a pace I can’t maintain. As a former half-marathon runner, I can feel the burn in the pit of my stomach as I write this. I can feel the heat in my legs and cheeks as I push myself to the finish line. Except this time,…

In a recent column, I talked about paring down my music rig and retiring my accordion. Over the years, I’ve transitioned from a 120-bass professional accordion to a 32-bass student model that, while less than 15 pounds, is now too heavy for me to handle. Because of my facioscapulohumeral…

I’m writing this column as my husband, Jason, drives our family through the last rolling hills on the eastern side of the Rocky Mountains. Last week, we took an epic road trip from our quiet hometown in Nebraska to the eclectic sounds and neon lights of the Las Vegas Strip.

Two days ago I marked the second anniversary of my relationship with my girlfriend, Amanda. As I celebrated this milestone, I found myself reflecting deeply on how much our lives have changed since we became a couple. Duchenne muscular dystrophy (DMD), my lifelong companion, has undoubtedly influenced…

I recently penned a column that took a surface look at the history of the disability movement in the United States. As many readers pointed out, my list of world changers and their accomplishments was far from exhaustive. I’d like to share another small part of the movement that…

I have friends and family who seem to be living on a medical merry-go-round. Every day they go to doctor’s appointments, have medical tests, or go through therapy. Their lives revolve around their healthcare. I haven’t been on this type of merry-go-round for a long time. I had a…

I recently had the opportunity to attend a Singaporean theater production titled “Supervision,” thanks to the SingHealth Patient Advocacy Network (SPAN). SPAN is a collective of patients and caregivers who provide feedback to improve healthcare here in Singapore. I’ve been part of it since 2022. The invitation to the play…

This August will mark 40 years since I was diagnosed with what we eventually discovered was limb-girdle muscular dystrophy. Though it’s taken me many years to accept my condition, it’s progressed slowly over the past four decades — and in that way, it’s somewhat akin to the…

I don’t gamble. I don’t know how to do it. I wouldn’t even know how to place a bet, and the only gambling game I recognize by name is poker. However, for someone who’s never gambled, I sure understand what it must feel like. How? Because I’m the caregiver of…