I was apprehensive when I was wheeled into my neurologist’s clinic on Jan. 18. I had taken my last dose of Evrysdi (risdiplam), a life-changing oral treatment that can improve motor function in SMA patients, during the last week of September. That was four months ago. “Why…
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Content warning: This column discusses medical trauma. First in a series. Who really knows what time it is? 11? 12? 1? Time blurs when you’re on the precipice of something that will throw a wrench in all of your plans. I’m lying in bed in our newly purchased recreational…
It seems there are hacks for everything now — little tips and tricks designed to help us get the most out of life while saving time, energy, or money. The internet and media are full of hacks for interior design, organization, cooking, budgeting, traveling, fashion, mindfulness, and just about anything…
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 my medical equipment and assistive devices, my toolkit contains one unusual item that I…
First in a series. As someone with SMA, I often think about the safety of my care. Many years ago, I told someone I’d been busy training a new nurse, and the person I was talking to responded, “Ari, you made me laugh out loud!” What was so…
My husband, Randy, and I sat across from the pediatric neurologist, eagerly anticipating his opinion of what was affecting our 8-week-old baby, Jeffrey. I say eagerly because I’m an optimist, and I’d taught kindergarteners at a self-contained school for children with multiple disabling conditions. I felt confident that we’d…
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 COVID-19 was capable of, I decided to hunker down and prioritize my health. But while I…
When rumors began circulating years ago that a certain blue police box time machine might be getting an accessible makeover, my interest was more than piqued. Would a ramp truly be added to the TARDIS when the British sci-fi show “Doctor Who” returned to the air late…
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, the reality of being in an actual snow globe hits me. I’m trapped. Every year, I’m…
At a routine dental cleaning over a year ago, the dentist informed me that a molar with an old root canal would need to be removed at some point. To prolong the tooth’s stay in my mouth, she applied a special gel then and at subsequent cleanings. All was fine…
