I had a date with Count Dracula. An award-winning ballet adaptation of Bram Stoker’s immortal creation — “Dracula: Ballet at its Darkest” — was to arrive in my homeland of Singapore for the summer, and a friend of mine got wind of the news. The production promised an…
Video Blogs
Here you will find our collection of vlogs created by people with SMA for SMA News Today. Each week, they share their personal stories and perspectives with the SMA community. Watch the latest videos below and follow us on YouTube for more.
SMA + Kidney Stones = A Recipe for Hospitalization
In this episode of the Morale Monologue, Michael discusses his recent battle with kidney stones. A few weeks ago, he was admitted to the hospital to have a kidney stone removed. He discusses the procedure and what doctors did to correct the problem. He also offers tips on what to do if you have a urinary tract infection.
Further reading
You know you’re in trouble when your orthopedist uses words like “sclerosis.” After several excruciating months of pain, I was exactly where I needed to be: Gillette Lifetime Specialty Healthcare in St. Paul, Minnesota. I’d been dealing with hip and lower back pain since early…
July is my favorite time of year to be active, travel, and chase adventures. Like many people with SMA, cold weather is hard on my body — my muscles get tense, my fingers and toes get icy, and the heavy layers of warm clothing make it hard for me…
Every March, I connect with a county worker to reassess my waiver, which is a federally financed Medicaid budget covering home- and community-based programs. The questions are always the same: How has my health been over the past 12 months? What do I like to do in my free time?…
Note: This column describes the author’s experiences with Cymbalta (duloxetine), Prozac (fluoxetine), and Celebrex (celecoxib). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. After months of agony — and I mean agony — I finally decided to go off…
Note: This column describes the author’s own experiences with fentanyl and other pain medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “You really know pain, huh?” someone asked me, eyes wide with concern. In response to their offering me…
I’ve been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while I was in bed, as usual. My mom also happened to be in…
My mother tried persuading me to get a hospital bed at home for years. “Your uncle can help us source one that the pediatric hospital doesn’t want,” she said at one point. “Our neighbor doesn’t need hers anymore. She offered it to us. Do you want it?” Mom asked…
