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…
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
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…
A sick feeling sank like a rock in my stomach. My wheelchair would not fit in the airplane cargo hold, the airline employee told me. My only options were to refund our tickets or reroute us through another airline. My caregiver and I sat there, surrounded by our carry-on bags…
“Do you remember when Dad took us kite flying?” I asked my brother, Gabriel. We were on a train ride home from the Sands Theatre, where we’d just seen an international production of Disney’s live musical, “Beauty and the Beast.” “Nope,” he said. “I thought that was with the…
The Lights, Camera, Action! attraction at Universal Studios Singapore was just as I remembered it. Without missed or delayed cues, fans blew harsh winds, sprinklers rained, sound effects thundered, lights flashed, and a ginormous boat barged in — all to simulate how a special effects team could recreate…
When you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life. My pain isn’t as severe as that of some people I know, so I’ve never needed long-term treatment for…
Alice Wong, a disability rights activist with spinal muscular atrophy (SMA), devoted herself to fighting for the rights of people with disabilities and other underrepresented communities. When she died at age 51 in November, she left behind a legacy of advocacy and action. In her 2022 memoir, “Year…
In her anthology “Disability Visibility: First-Person Stories from the Twenty-first Century,” the late activist and writer Alice Wong offers profound insight into the power of storytelling. She says in one of her essays, “Storytelling can be more than a blog post, essay, or book. It can be an…
