I Treasured Every Moment of Hanging Out at the SMA Conference
“Dude, use your robotic arm to grab my leg!” Superstar blogger Shane Burcaw said these words to me when I met him a couple of weeks ago. Having read his…
Embracing My Inner Alien
— Kevin Schaefer
Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.
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Spending Time Alone Is Part of Living With SMA
The other day, I had my annual evaluation with a nurse to make sure I’m still disabled. This is one of the things that those of us who use government services for caregivers just have to do. It’s no…
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Flying with a Disability: National Lampoon’s Airline Extravaganza
Thanks to the fine folks who handled my wheelchair at the airport a few days ago, I’m now writing this column while sitting in my bathroom seat. My mom is going to…
I’m Learning to Recognize My Own Limitations
Since I started receiving my Spinraza (nusinersen) treatments in November 2017, my energy level has skyrocketed. Often, I don’t even realize just how good I feel now. Then I think…
My Bobblehead Days Are Behind Me
One of the ways that spinal muscular atrophy (SMA) has affected me physically is my posture. I’ve always had difficulty sitting up straight, and to this day I have lateral supports attached…
Finding the Sweet Spot
A few weeks ago, when I was preparing for my eighth Spinraza injection, I had to indulge in an activity that many of us with SMA dread. We manage everything from pneumonia to travel…
Research Advancements and Adults with SMA
On May 24, Zolgensma (previously known as AVXS-101) became the second FDA-approved treatment for SMA. This gene therapy from pharmaceutical companies AveXis and Novartis is a major milestone for the SMA…
Staying Home Alone When You Have SMA Takes Planning
Those of us who have SMA live surrounded by other people. We rely on others to bathe us, get us dressed, help us eat, move our hands, drive us to work, and to be available…
No Accessible Room at the Inn
I now know what it was like for Mary and Joseph when they were trying to find a room in Bethlehem. While we didn’t have to resort to sleeping in a manger, my parents and I had…
Making Connections Through SMA Enriches My Life
A couple of months ago, a woman stopped me in the hallway of the clinic I go to for physical therapy. She overheard me talking with one of my physicians about my Spinraza (nusinersen) treatments, and…
Everyone into the Pool: How I Learned to Love Physical Therapy
If someone had told me a few years ago that I would love going to physical therapy every week, I would have laughed. Let’s just say that the idea of letting other people stretch my arms and…
My Care Network Is Vast, and That’s the Way I Like It
They say it takes a village to raise a child. If that’s true, then it takes an army to care for someone who has SMA. Though most of us tend to have one or two primary caregivers,…
Making Big Occasions Inclusive
When it came time to plan for my brother’s bachelor weekend festivities, I was adamant about participating as much as possible. Events like this aren’t always inclusive for people with disabilities, but the two guys who planned…
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