Stephen King’s “The Shining” shows what happens when someone spends too much time cooped up indoors. Sure, supernatural forces provide the basis for the main character’s descent into madness, but a defining element of the novel is that it takes place in a remote hotel during winter snowstorms. I imagine…
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It takes a rather large team of specialists and various medical professionals to help manage my care alongside me and my mom, who’s my primary caregiver. That means I have to attend lots of doctor appointments. I’d like to tell you how many of those appointments and medical meetings I…
As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been spreading across the country. All I could do was roll my eyes. After the past several…
Empathy is often described as the ability to imagine yourself in another’s shoes, see the world through their eyes, and feel the weight of their experiences as if they were yours. But empathy is more than just a fleeting sense of understanding. It’s the heartbeat of human connections. It bridges…
I’ve mentioned before that I don’t always know what I’ll cover in this column when the time comes. It sure eases the anxiety level when I have a clue, though. Our SMA assignment with our third baby, Jeffrey, led me to appreciate “angel intervention” in all facets of…
Let me explain something called “pee math.” I was familiar with the concept, but didn’t realize it was a common experience in the SMA community until a colleague brought it up. It goes like this: When boarding a flight, you calculate how much liquid you can drink before…
Four must be my unlucky number, because the worst years of my life have all ended in four: 2014, the year of major depression, and 2024, the year of suck. (I’m sure 2004 was bad, too, given that I’d just undergone a spinal fusion the year before. Thankfully, I don’t…
“Wicked” is the musical movie superstar of the moment. I loved “The Wizard of Oz” growing up, and while I haven’t seen the wildly popular adaptation on stage or screen, it’s impossible not to know at least some of the music. Stephen Schwartz, composer of both the score and lyrics…
Have you ever dreamed of being a princess (or a prince)? I think most of us have, adults included. I’ve always been a Disney fan, and it has no shortage of princesses to choose from. Each one is unique, so it’s usually easy to find at least one you can…
As I reflect on 2024, I see that some great things have happened for me. I’m trying to figure out how to multiply those great things so they happen more often. This is one way I can gain an advantage while living with…
Recent Posts
- This Rare Disease Day, honor a caregiver in your life
- Trial of next-generation SMA gene therapy GB221 doses first patient
- I’m working to resolve some home equipment malfunctions
- Blood vessel damage may contribute to nerve cell loss in SMA: Study
- The major life changes that led to our family’s SMA assignment
