Another day, another trek to Gillette Children’s Specialty Healthcare. This time, though, it’s for something I’ve never done before: a cortisone injection in my right hip. For all I’ve written about chronic pain over the years, I don’t think I fully understood how debilitating it can be until just recently. It…
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
Another day, another devastating headline in the realm of video games. “Layoffs Leave The Future Of Xbox’s Award-Winning Accessibility Efforts In Doubt,” announces one story from the gaming news website Aftermath. The article, published on July 22 and written by a fellow journalist with SMA named Grant Stoner, details…
A community-driven campaign called SMAshing My Limits And Going Places aims to make it easier for people with spinal muscular atrophy (SMA) to find accessible places to stay when they travel. The campaign is spearheaded by Becoming Rentable, an online platform dedicated to helping people with disabilities find…
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…
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…
