I was recently asked about resources in the SMA community — what’s available, but also what’s missing and what we would most benefit from. Before I started this column, I didn’t really have much contact with the community. I went to…
I recently asked my brother, Adam, what his earliest memories of SMA are. At the time of my diagnosis, he was only 2, but his sharp memory has served as a powerful tool whenever we’re reminiscing about our childhood. Adam has always been like that. Growing up,…
New life experiences are welcomed when you’re a columnist. I’ve already written about notable stories from my past, and I generally don’t enjoy sharing my two cents on current events. I don’t want to beat a dead horse, or perhaps more accurately, beat Dr. Phil with a reusable…
Ella has been in therapy since before the day of her diagnosis with SMA. We knew she was late meeting many milestones, so we went to Early Intervention and started physical therapy. For every step forward, she took two steps back. We were dumbfounded. It…
Spinal muscular atrophy (SMA) can cause a lot of things, including muscle weakness, fatigue, and pain. It’s different for everyone. It also changes. One of the best side effects of my life with SMA is that I’ve been able to exercise my adaptability and my creativity. For me, the…
Between frequent migraines, sleep deprivation, losing significant strength in my arm and upper body, and the universal growing pains of being a teenager, my high school experience came with plenty of challenges. There was also that time I mustered the courage to ask a girl…
I finally got a tattoo. It may not seem like that big of a deal; people get tattoos all the time, sometimes they decide to get inked on a whim. You can show up at a parlor and leave an hour later with your…
Do you ever hop on social media and come across a post you feel was written for you, and only you? I know social media sometimes gets a bad rap. But at the same time, I don’t want to write social media off entirely. I love my online…
Play dates come and go for Ella, just as for any other 8-year-old. She usually has her friends come over to our house because of her wheelchair. The kids play on the first floor for a while, then they want to go upstairs…
We’ve all had some cruddy parking experiences. But when you have a disability, it’s usually a little more complicated. The difficulties typically occur due to other people parking. Sometimes, the problem is the parking spot. My current van is a side-entry model with a manual fold-down ramp. It’s similar…
