Spoiler alert: This column discusses the plot of the 2024 film “The Substance.” Hollywood was abuzz about Coralie Fargeat’s 2024 film “The Substance” when it arrived on the scene. It was a controversial contender for attention and awards. People seemed to either love it or hate it; audience…
Did you know dogs can be diagnosed with SMA? I did. As a child, I used to stare up at a news clipping of research about the condition in canines, which was pinned to the wall in the office of the Muscular Dystrophy Association (Singapore) (MDAS). My…
At the time I applied to be a columnist for SMA News Today, I knew just one piece of career advice: what you do in your personal life matters — especially if you’re a volunteer for anything. I was 19 when I received that advice. I had no formal…
Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I hadn’t meant to fall asleep. “I’m going to close my eyes for just a few seconds,” I told myself.
Last in a series. Read parts one and two. I bought shoes I wasn’t sure I’d wear. That seems like a trivial statement, I know. Except the shoes cost 119 SGD ($89) including shipping, and I hadn’t had any income for six months at the time of purchase.
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 transferred from a pediatric to a general hospital after I turned 18, my home-care…
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…
I’ll confess: When I wished for a spinal fusion in my teens, it was for cosmetic reasons. This was before kyphoscoliosis — an abnormal curvature of the spine both sideways and forward — had caused me severe pain and numbness that spread throughout my body. I hated…
I’ve never understood why some people are weird about wheelchairs. Why the pity? Why think needing to use one is one of the worst things someone could face? I blame my first power wheelchair for my inability to understand. I got it when I was about 9 from Make-A-Wish.
“Let me go, Mum,” I begged. It was Day 2 of a harrowing hospital stay. My chest had been hurting and feeling tight, nonstop. I couldn’t sleep. I couldn’t eat. I was tachycardic, with a heart rate in the 120s to the 140s. I needed a urinary catheter. I…
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