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If you’re a regular reader of my column, you might have noticed that it usually ends with a positive spin. Once, I even wrote about being thankful for things that don’t seem very good. I won’t deny that life with SMA has negative aspects, but whenever…
If you’re a regular reader of my column, you might have noticed that it usually ends with a positive spin. Once, I even wrote about being thankful for things that don’t seem very good. I won’t deny that life with SMA has negative aspects, but whenever…
The other day, I had an appointment at the hospital to change my nasojejunal (NJ) feeding tube. Since the tube is placed in my jejunum, a part of the small intestine, and not my stomach, these procedures have to take place under…
The other day, I had an appointment at the hospital to change my nasojejunal (NJ) feeding tube. Since the tube is placed in my jejunum, a part of the small intestine, and not my stomach, these procedures have to take place under…
Thinking about parallel universes can be scary. Sometimes, though, it’s necessary to think about the scary what-ifs in order to be more aware of the positive things in life. More on this in a minute. For my friend and fellow columnist Halsey Blocher and me, looking at the bright…
The homework assignment in fifth grade involved music. I probably wrote a few short reports about composers and attempted to draw some instruments with my dual-ended map colors. I wrote “Music” on the outside of the blue folder and added some spiffy artwork. Good spelling came…
I recently attended my first pop culture convention since the onset of the COVID-19 pandemic. Masked up, I felt right at home among the crowds of “Star Wars” and “Stranger Things” cosplayers passing by. Though it had been three years since my last con, I eagerly anticipated a…
As part of this column, I’ve taken to recording encounters with ignorant — if well-meaning — healthcare providers. Fortunately for me, those encounters have been few and far between. But that doesn’t make those few-and-far-between encounters any less frustrating. A few months ago, I wrote about a trip…
Rehabilitation sessions using a robotic suit called ATLAS 2030 improved joint strength and mobility in three boys with spinal muscular atrophy (SMA) type 2, according to data from a clinical trial. While wearing the device, the boys, who could not walk independently, were able to complete tasks involving…
SMA Awareness Month is upon us! To celebrate and remind everyone that raising awareness includes talking about our daily lives and relationships, I’m honored my best friend, Brianna Albers, said yes to the crazy idea of us interviewing and challenging each other publicly. Please read her interview…
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