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…
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.
Featured Post
Spinraza Update: Why I Still Get a Needle Jammed in My Neck Every 4 Months
A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved by the U.S. Food and Drug Administration. Every four months, I go to the hospital for a maintenance dose…
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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…
Marvel Movies, Day Trips, and Other Alternative Forms of Adventure
On Tuesday, April 2, I embarked on a noble quest. At one point, I thought I would need to summon the power of all six infinity stones to accomplish my goal.
Finding Comfort in the Absurd
Between frequent migraines, sleep deprivation, losing significant strength in my arm and upper body, and the universal growing pains of being a teenager, my high school experience came with plenty of…
About that Episode of ‘Dr. Phil’
A few weeks ago, reality television host Dr. Phil sparked a major controversy with his statements about interabled relationships. Much like Ken Jennings’s infamous 2014 tweet, a single statement…
How Aides in School Prepared Me for Having Caregivers
From the time I was in kindergarten to when I graduated high school, I had a full-time aide accompany me to all of my classes. This person helped me with my…
SMA Is Part of My Identity, But It Doesn’t Define Me
A few days ago, I was talking with my friend Young, a fellow journalist and comic book enthusiast who now writes a column for Charcot-Marie-Tooth…
From Homebody to Road Warrior
I write a lot about defying the odds and being adventurous despite my disability. I’m not keen on being called an inspiration by people who don’t even know me, but…
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