When I was a kid, my family used me to bump to the front of the line for the Haunted Mansion ride at Disney World. Despite my kicking and screaming because I was scared of the ghosts and creepy effects on the ride, my parents made me…
I’ve written in the past about my Echo Show from Amazon Alexa, but I wanted to provide further updates on how this device is helping me in my daily life. At the time of writing this, Skynet still hasn’t achieved total world domination, so I’m still OK…
February was a pretty exhausting month for me. I kicked it off with a two-week stint of pneumonia and a weekend in the hospital, then I got straight back to work once I felt better. To top it all off, I ended it with a 24-hour stomach virus…
Having SMA means that strangers approach me on a regular basis. From the onlooker who’s infatuated with my service dog, to the 10,000th person who sees my wheelchair and asks me if I “have a license for that thing,” I’m quite used to comments from people that range…
Alas, after a long couple weeks of constantly spitting phlegm into a cup and spending hours attached to my Vest Airway Clearance System, I’m finally getting over this pneumonia and back to “normal.” Normalcy isn’t exactly something that factors into my life at any point, but I…
It’s been a pretty lousy week for me, to say the least. What started as a ridiculously annoying cough in the middle of the first week of February eventually resulted in a trip to the emergency room the following Saturday. “Please don’t say the P-word, please don’t say…
In addition to providing a space for SMA patients, parents and caregivers to talk about their daily lives and ask each other questions, the SMA News Today forums are also designed so that the SMA community can discuss the latest news regarding research and treatments. Specifically, the research and development…
Since the launch of the SMA News Today forums, SMA patients and caregivers from all over have taken part in various discussions pertaining to life with spinal muscular atrophy. Topics that have so far been covered include acquiring assistance in college, disability and dating, using feeding tubes, having able-bodied siblings…
On Sunday, February 4, 2018, a feature-length documentary about SMA News Today columnist Alyssa Silva will air on ESPN 2. The film, Dare to be Remarkable, chronicles Silva’s life with SMA, as well as her lifelong love for the New England Patriots. Silva has been filming this documentary since…
Kevan Chandler, founder of the nonprofit organization We Carry Kevan, made national headlines in 2016 when some of his closest friends carried him on a specialized backpack across Europe. Chandler has SMA type 2, and since returning from his Europe expedition he’s written a book about the experience and helped…
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