The fall of 1996 brought the usual glorious colors, cooler weather, and a whammy of a news bulletin: I was pregnant. In our 40s, my husband, Randy, and I adjusted as well as possible, as did our equally stunned son, Matthew, who was 10. Our ecstatic daughter, Katie, then 7,…
Columns
A few years ago, a good friend of mine named Essie found out that her newborn daughter had been diagnosed with SMA. She reached out to me then, as she knew I had SMA, too. She had so many questions, so I went to my mom because she is…
Have you ever solved the world’s problems? I have. Well, sort of. That’s what we say we’re doing when Mom and I get together for coffee with our friend Connie Chandler, a fellow SMA News Today columnist. Our deep conversations often feel like they provide answers…
Last in a series. Read part one. “How are you feeling today, Sherry?” my director asked. We were about to rehearse for a play we’re working on. I’m still new to performing, and SMA makes me prone to fatigue, so before we start, she always checks on how…
Last week, I ran 4 miles in 50 minutes. “Big deal,” you might say. “You ride in a power wheelchair that can go 6 miles per hour.” All very true. Because I have SMA and cannot walk or bear weight, I use a power wheelchair as my primary…
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs of weakness. I couldn’t roll over, wasn’t able to hold my head up, and had minor…
Of the 43 years that I’ve been on my SMA journey, home health nurses have accompanied me for 39 years. I know a lot about home healthcare, particularly how registered nurses and licensed practical nurses work in one’s home. Unfortunately, not everyone is familiar with home health nursing and…
The 2023 film “American Fiction” follows a frustrated writer named Thelonious “Monk” Ellison (portrayed by Jeffrey Wright). While his books receive critical praise, his lack of commercial success stems from his resistance to writing more popular literature. When Ellison visits a bookstore, he groans when he finds his…
“Come on, girl, just use your four extra arms!” I often tease my friends like this when we’re trying to accomplish a tricky caregiving task together. Some things would go a lot smoother if we had more hands helping out, but because my spinal muscular atrophy (SMA) weakens my…
Today is my 28th birthday! As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day — is worthy of celebration. But 28 years of life is not something I…
