I’ve always had a robust sense of humor. Some people have told me that I’m witty and quick to respond to a funny situation while also defusing tense conversations with laughter. I think it’s a piece of my armor that protects me from my rare chronic illness, limb-girdle muscular…
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In the past couple months, I’ve had more medical challenges than usual. My right arm hasn’t been working well, leading to some additional struggles with activities of daily living. In June, what I thought was a bug bite appeared on the knuckle of my right middle finger. It would swell…
Moms worry about their children. As a mother of seven — Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 11; and Callie, 3 — I know firsthand what it’s like to be anxious and concerned about kids. My children’s ages span 20 years — another thing to…
A couple weeks ago, I co-emceed the Zero Project Asia Pacific Symposium 2025 with my girlfriend, Amanda. The event, a collaboration between SG Enable and the Zero Project, took place at Enabling Village, a community space here in Singapore designed for accessibility. The symposium gathered leaders in Asia to share ideas…
“He who has a why to live can bear almost any how.” — Friedrich Nietzsche I love a good quote as much as the next person. When I was teaching music in middle school, I’d sometimes write inspirational or thought-provoking quotes on the whiteboard to encourage conversation or reflection. At…
Mondays are one of my favorite days of the week as a busy mom to seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 11; and Callie, 3. I’m also a caregiver to Max, Rowen and Charlie, who all live with Duchenne muscular dystrophy (DMD).
My daughter Jill and my wife, Wendy, are my primary caregivers. In August, Jill and Wendy traveled to Iceland together. The day before their departure, we had a “bon voyage” family picnic. It was a lovely gathering, but I ended up with a couple of bug bites on my left…
Dear doctors, I am writing to share my knowledge about living with a rare, chronic condition called limb-girdle muscular dystrophy. There are many types of muscular dystrophy (MD), ranging in age of onset, severity, and common symptoms and comorbidities, such as heart and lung involvement. But…
One thing I love about living in the Midwest is enjoying all four seasons. The last week of summer is nearly over, and autumn officially begins next week. On a walk yesterday, I noticed the first leaves changing and drifting to the ground. Another thing about me is that I…
Living with Duchenne muscular dystrophy means every trip to the hospital is key to my survival. From heart scans to routine medical appointments, leaving home is never simple. I rely on my mom to ferry me to every checkup in our family’s wheelchair-accessible vehicle. Earlier this year, when…
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