If you had a chance to fictionalize your life in a children’s book, how would you do it? Would you make the protagonist yourself, or would it be a loved one while you are relegated to a secondary role? Would you depict an ideal version of yourself, a character with…
My life often echoes the absurdity of a Monty Python sketch. When my primary care physician called me on a Friday night in early May, I wasn’t thinking about my health. I hadn’t experienced any unusual SMA symptoms that week, and thus wasn’t expecting the urgency in…
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I thought it’d be different. I thought I’d be celebrating my 30th Spinraza injection with excitement and…
It’s almost a wrap for this year’s May madness. Whew. For me, the month commences with the birthday of a favorite former student and ends with that of a good friend, as well as my nephew’s wedding anniversary. In between are Mother’s Day, spring sports, end-of-school chaos,…
Note: This column describes the author’s own experiences with naturopathy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I started naturopathy over a year ago without much hope. I was living with a skin condition that no one but…
If you haven’t met this celebrity of the SMA community, I’d like to introduce you to my friend Angela Wrigglesworth-Titcombe. She’s 46 years old, has SMA, and is a fifth-grade teacher. She and her husband of six years, Justin, love to travel and enjoy…
Being diagnosed with a progressive neuromuscular condition like spinal muscular atrophy (SMA) often brings a range of physical challenges that significantly impact both the people with the disease and their loved ones. One of these challenges is scoliosis. According to the American Association of Neurological Surgeons,…
“So, how are you? What have you been up to?” I asked my friend Phoebe Chua back in November. It’d been a decade since we last saw each other. But we’d spontaneously reconnected and decided to go to a movie together. I wanted to know everything about her life…
For the past couple of years, I’ve been playing a Star Wars role-playing game (RPG) with friends from church. Yes, you read that sentence correctly. My church is progressive and a number of us in the congregation are self-professed geeks. Once a month, we gather for several hours…
Mom and I always bring another person or two to my specialist appointments at the SMA clinic. It’s out of state — about three hours from our home — so it’s easier when we have extra helpers throughout the long journey. It’s also nice to have company.
