When you or a family member has SMA, chaos management becomes second nature. You come to expect the unexpected, and you learn to adapt to whatever absurd obstacles come your way. Case in point: the majority of my family’s vacations. You could easily…
As a child of the mid-1990s and early 2000s, I still remember when Saturday morning cartoons were still a thing. Every Saturday of my childhood consisted of my parents propping me on my bench in our bonus room so I could watch everything from “Power Rangers”…
We often talk about the qualities of an ideal caregiver and what one should look for, but we rarely talk about what we as patients can do for our caregivers. The patient-caregiver relationship works both ways, and it’s important to keep in mind that our…
There’s that old saying about how when one door closes, another opens. The original quote by Alexander Graham Bell is, “When one door closes another door opens, but we so often look so long and so regretfully upon the closed door, that we do not see the ones…
There’s no denying that SMA can be brutal, taking more than just physical ability from those it afflicts. It can be a burden mentally, emotionally, and financially, as this recent study noted. However, if you have read my columns for…
Last week, I wrote about the personal impact that this year’s Cure SMA conference had on me, as well as the relationships I built during that week in Dallas, Texas. In this column, I’ll be sharing my perspective on the research component of the conference.
I guess the cat’s out of the bag. The featured photo here is the first official cast photo of Amazon’s upcoming “The Lord of the Rings” television reboot. Apparently, they wanted something different and modern, hence the name “The Fellowship of…
At the time of writing this, I’m sitting in my hotel room for the 2018 Annual Cure SMA Conference. My caregiver and his girlfriend are here with me, my parents are at dinner enjoying themselves, and this room is both accessible and spacious.
With my SMA, one might think that pretty much any kind of physical activity is out of the question for me. I use a power wheelchair, have severely limited use of my arms, I struggle to turn my head to the side, and if my driving…
As I’ve written in previous columns, my college years were some of the best years of my life. I discovered my passion for journalism, made lifelong friends, became more independent, and most of all, I acquired the perfect nickname: Schaef-Dawg. Credit to my former…
