As a kid, there were two things I really couldn’t stand: math and pulmonary function tests (PFTs). I was too young and naive to have an angry fanboy mentality toward the “Star Wars” prequels. Math, however, didn’t coincide with my interests or adolescent…
Along with all my other health problems, I’ve been dealing with cystic acne since high school. At the time, I hoped it was nothing more than regular acne that would run its course and become a non-issue…
As I get set up to type this column, the rain is steadily falling from the window behind my couch. The house is quiet and the coffee is still warm. It is Sunday morning, my favorite part of the week. I love the slowness this weekly time brings,…
For a couple weeks, I’ve been in a malaise and I couldn’t pinpoint the source of it. Of course, the occasional bad day will happen, but this was prolonged. Reading various columns and SMA News Today Forum comments has reminded me just how brutal winter is for…
Ella is beginning to look to her future. She realizes that all of the hard work she puts into her physical therapy sessions will help her in the long-run. She accepts that the Spinraza (nusinersen) injections, which she doesn’t like taking, are also…
I live my life surrounded by machines. I wake up every day wearing a soft nasal mask, which is connected by a large tube to my BiPAP machine. The steady flow of air pumping through the tube is the first thing I hear in the morning.
Earlier today, I signed the paperwork that will officialize my change in major. It wasn’t that big of a deal. It involved two minutes of my time, most of which was spent trying to figure out my projected graduation date, and a quick email to…
Allow me to begin this column by traveling back in time to the days of middle school mathematics. Now, my memory may not serve me as well as it did during my school days (I’ll blame it on “old” age), but I do particularly remember sitting in class…
Ella has had a full week. Her school held parent-teacher meetings over two days. At Ella’s school, the students lead the conferences. She made a slideshow to showcase her work and then practiced her presentation at home outside of our hearing. The kids had Thursday and…
To any parent who has a child with SMA: Recently, I had a conversation with my caregiver Randy about our goals for the future. We talked about career goals, relationship goals, and all of the things we each wanted to do with our adult…
