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.
Columns
The best sitcoms capture the chaos and unpredictability of everyday life. In the new Apple TV+ series “The Studio,” co-creator and star Seth Rogen plays Matt Remick, a disgruntled movie executive who lands his dream job when he becomes the head of the fictional Continental Studios. Yet while…
When I close my eyes, I see the world as it should be — a place where accommodation isn’t something to fight for; where people with disabilities don’t have to plan every step, hoping the next doorway isn’t too narrow, the next curb isn’t too high, and the next space…
Now that I’ve been living in my new house for a month, I better understand what I love about it. In my last house, where we’d lived since I was 13, I had my own home within the home, which included my bedroom, bathroom, kitchen, and medical supply room.
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.
My husband, Randy, and I had our first baby while I was teaching students with a variety of difficult diagnoses. Our son, Matthew, was followed three summers later by our daughter, Katie. During both pregnancies, I never worried that they wouldn’t be healthy. Then, before I blinked too many times,…
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement recently when they came across a large trash bag filled with some of my stuffed animals.
Memories are like windows that look inward. Living with spinal muscular atrophy (SMA) certainly adds a special framework to that window, allowing light to pour in on all the unique experiences I wouldn’t have otherwise had. I consider that a blessing. SMA has taught me to treasure my…
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…
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 vibe. My neurologist catches me up on all the books he’s read recently.
