Having just moved to Pittsburgh from rural Somerset County, Pennsylvania, one of the many things I had to attend to was finding a new primary care physician. Back in Somerset, there weren’t many choices. Around 2003, I started with a doctor who was fresh out of residency and didn’t…
Three boys with Duchenne muscular dystrophy (DMD), plus one mom, plus three clinic days equals much preparation. On Tuesday, the four of us left our home in Nebraska to drive to Denver for the boys’ neuromuscular clinic visits at Children’s Hospital Colorado. When my boys were younger, getting…
I hope my columns haven’t sounded repetitive lately. I know I’ve mentioned more than once that my oldest son with Duchenne muscular dystrophy, Max, fell and broke his leg almost four weeks ago. But I continue to learn, adjust, and come to realizations that inspire my column. In…
As I start a new adventure writing for Muscular Dystrophy News Today, I’d say the first sentence is the hardest. I’m so glad I got that out of the way! I’ve joined the team at Bionews, the parent company of this site, to share my experience dealing with…
On Feb. 18, I attended an ART:DIS event at the Singapore Art Museum (SAM) to kick off this year’s Arts and Disability Forum. It was a panel held with Project Art Works (a neurodivergent artist collective based in Hastings, England) to discuss the creative and diverse value…
Life feels a little messy right now. It feels like I have no control. As a full-time caregiver to my three sons with Duchenne muscular dystrophy (DMD) and a mother to my seven children, my days are often timed down to the minute and centered around their schedules…
The past week has been difficult. Our oldest son with Duchenne muscular dystrophy, Max, fell last week and hurt his leg. In the past several days, we’ve figured out how to dress him and help him in the shower and restroom. He was doing these tasks independently or…
Note: This column includes thoughts about suicide. Resources for help are listed at the end. On the verge of this new year, I was struck by what felt like a surrealistic event. It was a surprise I never expected, coming just three days before the end of my tumultuous 2022.
I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. Rowen stopped walking three years ago at the age of 11, after he fell and broke his lower leg. Of course, we did everything we could to encourage fast healing, as we…
Most days, my husband, Jason, and I take our kids to school in the same van. It’s an excellent time to be with them before school, and I get a nice 10-minute date with Jason after dropping off Charlie, the last of the kids to exit. I was especially…
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