As Ella Fitzgerald and Louis Armstrong softly sing Christmas classics in the background, I ask my mother to set me up on my iPhone so I can gear up to write another column for you this week. There’s something both terrifying and wonderful about a blank page before…
Ella again had a Spinraza (nusinersen) injection last week. As per the regular routine, she had a physical therapy (PT) assessment using the Hammersmith Motor Function Test. The last time she did this test, she improved her score by four points, which…
At the time of this writing, I’m halfway through my Spinraza (nusinersen) loading doses. As I mentioned in a previous column, I’m receiving mine through the neck instead of doing the standard spinal tap injections. It’s certainly not for everyone, but it’s worked great for me.
I’ve always had a weird relationship with my body, and I’ve always struggled to put that relationship into words. I don’t struggle with self-image; my reflection isn’t distorted. Most times, I just wake with an impossible disgust. It’s not that I hate my body,…
Free time is a beautiful and wonderful thing to have in a day. It allows time for the activities we love most, breaks up our days so we’re not wearing ourselves thin, and gives a moment to rest and re-energize. It also is a rarity in my life…
Fall slips away softly as the brilliant colors of fallen leaves let go of their color and begin to dry up, preparing for decomposition. The time comes when all leaves must be lifted from the grass and placed in the leaf piles we so…
We’ve all heard the saying that PT is short for “physical torture,” and for the longest time I clung to that notion and refused to go. I did physical therapy when I was in preschool and early elementary school, but all throughout middle and high school I…
Cold winds are beginning to blow the leaves off of the trees. A circus of colors swirl in the air, never resting on the ground. Winter is on its way. Getting Ella ready to leave the house during the summer and spring…
A few days ago, I found myself strapped to an operating table while a radiologist injected a needle into the side of my neck. From there, I felt a tingling sensation in my body as a specialized spinal fluid flowed throughout my insides. All the while a…
I’ve been having a lot of headaches lately and, naturally, my anxiety had me convinced I was going to die of a brain tumor. I knew, of course, how improbable it was. Every article I read — and I actually read quite a few —…
