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…
From Where I Sit — Halsey Blocher
Halsey Blocher is a young woman who was diagnosed with SMA Type 1 in 1999 after a blood test revealed a deletion of the survival motor neuron gene. She now lives with her loving family in Fort Wayne, IN and spends her free time reading, cooking, creating, and enjoying life’s blessings. Halsey is passionate about her work as a Column Lead at Bionews Inc. as well as volunteering with various local organizations. Writing is her lifelong dream, so she uses this gift to advocate and offer glimpses into everyday life with SMA in the hope that it will inspire readers to seek the positive in every situation
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When I was little, SMA wasn’t widely known or understood. Its rarity meant that few people had heard of it unless they were confronted with it. Families like mine carried much of the responsibility of sharing our knowledge and experience to educate others, from friends to medical professionals, about…
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…
If you’re a regular reader of my column, you might have noticed that it usually ends with a positive spin. Once, I even wrote about being thankful for things that don’t seem very good. I won’t deny that life with SMA has negative aspects, but whenever possible,…
With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom. But believe…
It’s not uncommon to plan for the future. Most of us have at least an idea of what we’d like our lives to look like five, 10, or 20 years from now. Some people even lay out detailed plans for how they intend to accomplish their goals regarding careers, marriage…
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