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 moment stuck with me — not because I was surprised, but because…
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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. I drove up every day to help with lodge business. As the parkway’s…
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 epidural nerve block for my chronic neuropathic pain, almost a month after…
It was another appointment in an appointment-packed January. My hopes weren’t particularly high, but no one will ever accuse me of being a less-than-perfect patient, so I braved the cold bite of the new year. I was seeing an ear, nose, and throat (ENT) specialist based out of…
I didn’t expect to find myself participating in a Valentine’s Day card exchange as an adult. I thought such festivities were (sadly) reserved for kids. But then a friend shared a Facebook post last year inviting people to join a card exchange for anyone with SMA and their…
My husband, Randy, and I moved our family to the North Carolina mountains in the final hours of 1995. Adventures in our old farmhouse commenced immediately. We considered a newsworthy blizzard and the escape of two flying squirrels from the wall into the dining room ample excitement for a long…
Last month, the biotechnology company Scholar Rock submitted an application to the U.S. Food and Drug Administration requesting approval of an experimental add-on therapy to treat spinal muscular atrophy (SMA). The investigational drug apitegromab is intended to target a protein in the bloodstream that inhibits muscle growth with the…
The weather can affect those of us with SMA in ways that many people wouldn’t think of. For example, I wish I could just enjoy looking out of the window as the snow falls, with everything I need to wait out a winter storm. But in my reality, ice,…
I learned my vision needed assistance in fifth grade. Although I unwittingly squinted at the chalkboard, my report cards never indicated a problem. I was a model student because I adored my teacher, Mrs. Chandler. I didn’t want to disappoint my teacher parents, either. They never needed to prod me…
Stephen King’s “The Shining” shows what happens when someone spends too much time cooped up indoors. Sure, supernatural forces provide the basis for the main character’s descent into madness, but a defining element of the novel is that it takes place in a remote hotel during winter snowstorms. I imagine…
