Columns

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…

I was tempted to do a play on the show “America’s Got Talent” and title this column “FSHDers got talent,” but I knew the improper grammar wouldn’t get past my excellent editors. That being said, after participating in a recent FSHD Society wellness group session, I know that my fellow…

Each of my writings in this column has focused on living life with limb-girdle muscular dystrophy. While the mission of Bionews, the parent company of this website, includes sharing what it’s like to live with a chronic progressive condition, I believe it’s also paramount to share other aspects of…

“Mommy, hold me. Mommy, hold me.” These were the words I heard repeatedly from my 3-year-old daughter, Callie, during the four days we spent in the neuromuscular clinic with her older brothers last week. It wasn’t normal for her to want to be held. I’ve never traveled with a stroller…

Tomorrow evening, my longtime caregiver, Glenda, will leave her job after 18 years and 10 months of faithfully serving our family here in Singapore. She’ll be returning to the Philippines to be reunited with her husband and three daughters, whom she hasn’t seen regularly for the past eight and a…

My husband, Jason, and I are parents to seven children: Lexi, 23; Max, 19; Chance, 17; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. This week we’re traveling with five of them: Max, Rowen, and Charlie, who are our three sons with Duchenne muscular dystrophy (DMD), and our…

When I was 13 and my brother, Tim, was 16, we got skis for Christmas. I’m not sure why Mom and Dad decided to get them for us. Jeannette High School, my alma mater, had a ski club, but Tim and I weren’t members. I don’t recall asking for skis.

A close friend of 30 years recently asked what my life was like before I was diagnosed with limb-girdle muscular dystrophy. When I met this man, we were both in college, studying music and playing drums. It was 1991, and I’d been diagnosed with muscular dystrophy for only…