Some people live for cold weather. They hate the heat, for some strange, inexplicable reason, and live for the day when they can pull out their chunky knit sweaters and thick, fuzzy socks. I am not one of those people. Aesthetically, I love the colder months. I love candles and…
Throughout my life, the doctors, nurses, and other medical personnel who have cared for me have filled out a collective mountain of paperwork. I’m willing to bet that far more of my days have been documented than not. Most charting is electronic now, but there are certainly boxes full of…
Contrary to what others may perceive, living with spinal muscular atrophy (SMA) doesn’t come with an instruction manual. Trust me, though, there are many days I wish it did. A common question I’ve been asked throughout my lifetime is how I manage the daily nuances of my life…
One thing I’ve learned from not going through Singapore’s formal education system is this: When it’s time to be a working adult, to earn your keep, it’s incredibly hard to persuade someone to hire you if you have a blank résumé. Everyone has to start somewhere to gain employment,…
“Please don’t feel sorry for me when I don’t feel sorry for myself.” These are the words I wish I could tattoo across my forehead anytime I’m out in public. OK, maybe that would be a little over the top. Perhaps I’d settle for a sign hanging from my…
Note: Spoilers ahead for the novel and play. My dad and I recently saw a play adaptation of Stephen King’s “Misery,” perfect viewing for the spooky season. Anyone familiar with King’s novel or the iconic 1990 film starring Kathy Bates and James Caan knows the story. When novelist…
Every person with SMA deserves to have comprehensive care and to know they'll be taken care of, no matter what happens, from birth to death, says patient advocate Brianna Albers.
Tim Burton’s “The Nightmare Before Christmas” is a family favorite around here, with my brother being the biggest fan of us all. He even dressed up as the movie’s main character, Jack Skellington, for Halloween one year. This beloved stop-motion animated movie has become a pop culture icon,…
Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into my lower spine. After a handful of injections, I understood the drill. I knew what to…
The insidious nature of SMA type 1 that was affecting our baby Jeffrey intensified in October 1997. While relatively calm moments occasionally appeared after a disastrous pulmonary consultation earlier in the month, Jeffrey began experiencing respiratory distress to the point of needing morphine. My frazzled mind filled with…
