Embracing My Inner Alien – a column by Kevin Schaefer

May 26, 2020May 22, 2020

Thoughts About Risdiplam: Pros and Cons of Starting a New Treatment

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

As I lay sideways on the operating table for my most recent Spinraza injection, my neurologist asked me about an upcoming SMA therapy. He and I like to make ... Read more

May 19, 2020May 15, 2020

That Pesky Pre-Spinraza Injection Fatigue

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

When I began my journey with Spinraza (nusinersen) in November 2017, I had little more than an inkling about what to expect. At the time, I was more concerned ... Read more

May 12, 2020May 8, 2020

Managing SMA Is Like an Ongoing Chess Match

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

Puzzles are all the rage these days. Since the onset of the COVID-19 pandemic, countless friends on my social media have turned to jigsaw puzzles as a newfound hobby. ... Read more

May 5, 2020April 30, 2020

SMA Humor Writes Itself

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

The comedian Brad Williams has a great one-liner about writing jokes. Williams’ observational humor is predominantly rooted in his experiences as a man born with achondroplasia, a type of ... Read more

April 28, 2020May 1, 2020

My Marvel-inspired Workout Routine for COVID-19 Lockdown

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

As I entered week six of COVID-19 lockdown, I knew I had a choice to make. I could continue to experience the effects of being unable to go to ... Read more

April 21, 2020April 16, 2020

A Tale of Two Kevins

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

The receptionist at my physical therapy clinic looked up from his computer, meeting my eyes. I could see the lightbulb shine in his brain. “That’s right, I remember your ... Read more

April 14, 2020April 10, 2020

The Truth About My Plastic Obsession

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

Amid the cluster of medical equipment, my childhood bedroom had an even more distinguishable feature: buckets and buckets of plastic action figures. I had everything from six-inch “Star Wars” ... Read more

April 7, 2020April 2, 2020

Harmony and Revolution in Netflix’s ‘Crip Camp’

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

Editor’s note: This column discusses some of the plot of Netflix’s documentary film “Crip Camp.” A new Netflix documentary called “Crip Camp” opens with an eclectic credits sequence set ... Read more

March 31, 2020March 26, 2020

A Different, Better Kind of Isolation

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

A blue body cast covered me from my waist down. The pain in my right leg skyrocketed each time I moved. I intentionally tried to avoid going to the ... Read more

March 17, 2020March 17, 2020

Should I Panic About the Coronavirus?

Columns, Embracing My Inner Alien - a column by Kevin Schaefer

Almost every aspect of my life with SMA comes with a risk factor. Whether I’m traveling out of town or going to a movie with friends in the wintertime, ... Read more

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