31 Days of SMA: Family and SMA
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Kevin Schaefer, —
Articles by Kevin Schaefer
31 Days of SMA: Finances and SMA
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31 Days of SMA: Confronting an SMA Diagnosis
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31 Days of SMA: Life With SMA Type 3
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Dreading the Bed: Sleep Brings Vulnerability
“So, do you sleep in your wheelchair?” Believe it or not, I have been asked this question more than a few times. Granted, I don’t recall hearing it after I finished middle school; but even then, the fact that any kid thought this was the case…
How to Hug a Wheelchair User with a Robotic Arm
Of all the technologies that I use in my everyday life, the two most important ones are my wheelchair and my JACO robotic arm. My chair keeps me moving from one place to the next, and my robotic arm compensates for many of…
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 books, and watched him and his fiancee, Hannah…
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 get my chair looked at, and until then, I needed 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 back to when I was a teenager, struggling with sleep apnea…
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 to both sides of my wheelchair to help with this. I…
