Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with SMA Type I through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.I have a confession to make. When the time comes to write this column, I often cry out to my parents, “What do I write about?!” I’m usually met with eye rolls. I don’t blame them. I’ve asked this question so many times that it’s become a running joke…
In 2019, I had my first videonystagmography (VNG) test. A VNG test uses ski-like goggles to test a person’s involuntary eye movements when moved into certain positions. Inside the goggles, a camera tracks these movements while the doctor assesses the problem on a computer screen. Though vertigo is…
A few years ago, I bought a book that I thought would change my life. It was during my self-help era, when I devoured any book I could find that would make me a better version of myself. With thousands of reviews and such high praise, I was curious to…
With Super Bowl LVIII around the corner, it’s a bittersweet feeling for avid football fans like me who enjoy watching countless hours of football every week. On the one hand, the thrill of the most exciting game of the year fires me up. But on the other hand, I…
For most of January, my calendar was filled with appointments and procedures. I’ve found that a crowded schedule isn’t out of the ordinary when living with SMA. Taking care of myself is a full-time job — one that I didn’t sign up for, but still face with strength and…
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…
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…
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…
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 followed the traditions that come at the start of each new year. However, with introspection and…
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 a topic for this week’s column, my procrastination got the best of me, as it usually…
