As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm.
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When living with SMA, building a survival toolkit is essential. These are the resources and strategies that help me navigate any challenges that come my way. While most items are obvious, such as…
Once upon a time, a pandemic enveloped the world and put my life on hold for years. With a weakened body due to SMA, and without knowing what the virus that causes…
Whenever it snows, I feel like I’m inside a snow globe. The sparkling flakes daintily scurry down, covering the glistening trees and other surroundings. Everything feels magical for a moment in time until, suddenly,…
This may be an unpopular opinion, but I don’t buy into the hype of New Year’s resolutions anymore. For years, I would set goals and articulate my intentions. I made vision boards. I…
This column describes the author’s own experiences with Spinraza (nusinersen). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When trying to decide on…
As I check off the last item on my long list of gifts for the family I adopted this Christmas, I say a little prayer that they’ll feel utmost joy and kindness…
Entering the hospital recently for what felt like the millionth time was not my idea of an afternoon well spent. Nevertheless, it wasn’t like I had much of a choice. My nasojejunal feeding…
With a brisk chill in the air and an impending snowstorm near, I’m reminded that it’s officially the time of year when people start asking me, “Where’s your coat?” It’s a valid concern on…
If you’ve never shivered at the sound of someone coughing, chances are you’ve never experienced the weight of a respiratory infection. For someone living with SMA, that’s not usually the case. Getting these…
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…
“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…
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…
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