A tribute to my dedicated nurses, who go above and beyond
Second in a series. Read part one. My mum likes to say that my home-care nurse is like a second mother to me, and I’d have to agree. Ever since my SMA care was…
Columns
Why I hate (part of) the 21st Century Cures Act
Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique…
Finding light in the winters of life with SMA
A few weeks ago, I glanced out my window and instinctively squinted. Before me was my backyard covered in a blanket of ice and thick snow, blinding me with the sun’s reflection. The rocky hills were now shiny…
The towering pine that stands watch over Jeffrey’s resting spot
The revelation that my husband, Randy, and I were becoming newborn parents again called for a comprehensive to-do list. Our other children, Matthew and Katie, were in elementary school. With no intention of needing baby items…
Seeing myself in the world of the ‘Wicked’ film
When the movie version of “Wicked” hit theaters last fall and skyrocketed to critical and commercial success, musical theater enthusiasts everywhere felt validation. The blockbuster adaptation of the hit musical struck a chord with devoted fans, casual viewers,…
MDA Clinical & Scientific Conference starts on March 16
The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place on March 16-19 in Dallas at the Hilton Anatole. The four-day event…
Chiseling away at inaccessibility, slowly but surely
When I backed off my van’s wheelchair lift, I didn’t find what I expected to. We had just parked at a restaurant we’d never been to in a different town, and I knew there would be a ramp onto the…
I rely on caregiver support to maintain my independence
A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how hard this is.” That…
The journey that led to an incredible rare disease community
In September 1995, my parents began running the family’s newly acquired lodge on the stunning Blue Ridge Parkway. My husband, Randy, our two children, Matthew and Katie, and I lived about an hour away at the time.
‘What can a pain specialist do for you, anyway?’
First in a series. “All right, I have to go. Bye, Sherry,” my then-new pain specialist said. “I hope I won’t see you for a few months.” That was a few days after he’d administered a caudal…