After my first injection of Spinraza (nusinersen) last November, I posted on Facebook to tell all of my friends and family how it went. Amid the “Glad it went well!” and “Praying for you” comments, my former youth pastor said that he couldn’t help but think…
As I’m writing this, my butt is pretty freaking sore. No, I didn’t go bungee-jumping this weekend or hurt myself bull riding; nor did I go to a marathon of all the Marvel movies leading up to “Avengers: Infinity War” and…
Twitter is an interesting place. On one hand, it provides a platform for me to share the things I love with like-minded people and to connect with other internet and pop-culture addicts. I love waking up in the morning to memes, witty one-liners, movie conversations, and…
Last week, I wrote mostly about my trip to New York City, and how my parents and I managed to drive through rush-hour traffic in Times Square. Once we made it into the heart of the city, plenty more adventures were to be had that…
Before I go any further with this column, let me go ahead and get this out of the way: My parents are awesome, and I saw “Hamilton” on Broadway with my mom last week. Go ahead and throw your virtual pitchforks at me…
Growing up, I only had a handful of friends with SMA. As a result of my desire to be “normal,” I didn’t show much interest in engaging in any kind of disability community. Aside from participating in the annual Muscular Dystrophy Association (MDA) Muscle Walk fundraiser with…
Last week, I wrote about how living with SMA requires me to be proactive. When I want something or I desire to be more independent, I often have to develop creative solutions to overcome physical limitations and logistical issues. This applies to acquiring caregivers, getting transportation, and…
Over the years, I’ve talked with many SMA individuals and people with other disabilities who crave more independence in their lives. Beyond the physical limitations that come with having a disability, the biggest frustrations have to do with finding resources to become more independent. Society doesn’t exactly make…
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…
