While spinal muscular atrophy is strictly a physical condition, it can still take a mental and emotional toll on those who have it. Between having to be dependent on others for physical needs, feeling like a burden as a result, and constantly being reminded of the things you…
Embracing My Inner Alien - a column by Kevin Schaefer
The upcoming film “Don’t Worry, He Won’t Get Far on Foot” by director Gus Van Sant and starring Joaquin Phoenix is already stirring up controversy in many disabled communities. Depicting the life of the late quadriplegic cartoonist John Callahan, the film is just one of many movies…
I’m often told by friends that I’m a pretty chill, go-with-the-flow kind of guy. In my podcast group, I’m the peacekeeper, if and when a dispute ensues among my co-hosts. When I was on the editorial staff of North Carolina State’s student newspaper, I was the guy who…
Since starting my full-time position here at SMA News Today, I’ve had the opportunity to take part in several multimedia projects. The podcast I do for this site is one of my favorite parts of my job, as I’m always fascinated to talk with other SMA individuals…
For the longest time, I thought New Year’s resolutions were one of the corniest, hokiest, most pointless traditions in our culture. Every year, people set unrealistic goals that they never follow through with, which only leaves everyone feeling disappointed and apathetic by the time March or April rolls…
I was maybe 4 or 5 years old the first time I saw the original “Star Wars” trilogy. It was a VHS set, and I still remember the old-fashioned covers that featured characters like Yoda and Darth Vader. For those of you ultra-millennials out there, VHS tapes are…
As Christmas lurks around the corner and everyone is hustling and bustling for last-minute gift deals, I’m reminded that this time of year requires extra preparation for myself as well. The holidays are great, but it’s the weather that accompanies this season that I have to handle with…
At the time of this writing, I’m halfway through my Spinraza (nusinersen) loading doses. As I mentioned in a previous column, I’m receiving mine through the neck instead of doing the standard spinal tap injections. It’s certainly not for everyone, but it’s worked great for me.
We’ve all heard the saying that PT is short for “physical torture,” and for the longest time I clung to that notion and refused to go. I did physical therapy when I was in preschool and early elementary school, but all throughout middle and high school I…
A few days ago, I found myself strapped to an operating table while a radiologist injected a needle into the side of my neck. From there, I felt a tingling sensation in my body as a specialized spinal fluid flowed throughout my insides. All the while a…
