Have you ever felt like there could be someone spying on you by listening to your private conversations? Well, perhaps that sensation is being caused by your virtual assistant. Yes, I’m talking about those helpful little devices that sit on the corner of the table or dwell in your smartphone’s…
One glance at my medical records will very clearly tell you that I’m not exactly healthy. The information contained within my chart includes a primary diagnosis of spinal muscular atrophy type 1 and a list of medications prescribed to treat that disease and manage its…
Last month, I sat at the kitchen table intently wrapping a birthday present as the sunlight began to fade. My home health nurse sat beside me in the dwindling light, with a piece of tape on her extended finger for when I would need it. “I wish…
I tend to attract attention while out in public. It’s not really because I behave in a way that draws attention. It’s just that people in wheelchairs toting a menagerie of medical equipment and an entourage are highly noticeable, whether we want to be or not. Ironically, we stand out…
It takes a lot to manage daily life with SMA. From the mundane to the extraordinary, everything I do — although it takes much more than just myself — requires a practiced juggling act consisting of medications, specialists, assistive technology, medical equipment, appointments, adequate rest, and helping hands. One…
Right about now, most people in the U.S. are preparing for Halloween by buying candy for trick-or-treaters, making costume alterations, and planning parties. That’s all fun, but since childhood, I’ve been drawn toward a different holiday: el Día de los Muertos, or Day of the…
I love to go out and explore bits of the world with family and friends. Dinner at a restaurant, coffee dates, shopping trips, festivals, vacations — all of these are awesome activities. It takes some effort and teamwork to get my medical equipment out the door and…
The passage of time is a strange thing. A quarter of a century seems like such a long time to have been alive, yet at the same time, it’s like the blink of an eye. Somehow, as of Sept. 26 (the day I’m writing this), that’s exactly how long I’ve…
As a young teenager, I went with my mom to a workshop at a Cure SMA conference about living with SMA as a woman. A room full of young ladies and their mothers spent the afternoon asking questions of the panelists and seeking to gain wisdom and…
When I say “inaccessibility,” what’s the first thing you think of? You might envision something like a set of stairs, a broken elevator, or a car that’s been carelessly parked in front of a ramp. These do create accessibility barriers for people with mobility challenges such as spinal…
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