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Jan 17, 2025 | 
smanewstoday.com | Alyssa Silva |Steve Bryson |Ari Anderson |Katie Napiwocki
As I lay in bed, willing my body to find some energy to write this column, a notification popped up on my phone. According to USA Today, a “quadruple whammy of viruses” had been spreading across the country. All I could do was roll my eyes. After the past several weeks, I didn’t need a news article to tell me how rampant viruses were in the community. I also didn’t need my anxiety levels to be higher than they already were.
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Jan 13, 2025 | 
smanewstoday.com | Brianna Albers |Steve Bryson |Halsey Blocher |Katie Napiwocki
Let me explain something called “pee math.”I was familiar with the concept, but didn’t realize it was a common experience in the SMA community until a colleague brought it up. It goes like this: When boarding a flight, you calculate how much liquid you can drink before takeoff without it making you need to go to the bathroom in the air. Pee math gets exponentially more difficult the longer you’re on board. How do you go 10, 11, 12 hours without going to the bathroom?
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Aug 13, 2024 | 
smanewstoday.com | Kevin Schaefer |Margarida Maia |Steve Bryson |Katie Napiwocki
My 7-year-old niece, Lily, has an unparalleled level of curiosity. She asks questions about the world, when we’re going to Disneyland next, and whether I’ve seen every episode of “Full House.” The answer to the latter is yes. Lily also inquires about my life with SMA, and specifically, my caregivers. Every time she comes over she wants to know which of my personal care assistants (PCAs) is scheduled to come that night.
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Jul 29, 2024 | 
smanewstoday.com | Brianna Albers |Marisa Wexler |Halsey Blocher |Katie Napiwocki
I was supposed to be preparing for an upcoming work trip to Austin, Texas. Instead, I was sitting in a hospital room, waiting for the doctor on call to look at the area around my gastrostomy tube (G-tube). I’d spent the past several months in a nebulous state of health. A hospitalization in December had highlighted a whole host of underlying concerns, from a fatty liver to potential food allergies.
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Jan 26, 2024 | 
smanewstoday.com | Halsey Blocher |Marisa Wexler |Kevin Schaefer |Katie Napiwocki
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 else you can think of. Did you know there are even hacks for navigating life with a disability?
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Jan 8, 2024 | 
smanewstoday.com | Brianna Albers |Katie Napiwocki |Mary Chapman |Patricia Silva
Last updated Jan. 8, 2024, by Mary Chapman Fact-checked by Patricia Silva, PhDBecause every person with spinal muscular atrophy (SMA) can have many different issues they may be dealing with, there isn’t a single combination of physicians and specialists who are involved in SMA care. So your SMA healthcare team won’t necessarily look like someone else’s.
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Jan 8, 2024 | 
smanewstoday.com | Brianna Albers |Katie Napiwocki |Susie Strachan |Marisa Wexler
Last updated Jan. 8, 2024, by Marisa Wexler, MS Fact-checked by Patricia Silva, PhDOver the course of a lifetime, most people with spinal muscular atrophy (SMA) will require medical care from many types of specialized providers to help maximize their health, well-being, and mobility. Coordinating among these various providers can be a challenge.
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Sep 29, 2023 | 
smanewstoday.com | Halsey Blocher |Katie Napiwocki |Steve Bryson |Alyssa Silva
I just turned 26 on Sept. 26, which makes it my . Never heard of a golden birthday? You’re not alone. It’s believed they were invented by American author and teacher Joan Bramsch in the 1950s. She celebrated each of her five children’s golden birthdays, and the idea seems to have become more of a trend in recent years. There’s little information available about where she got the idea or why we celebrate golden birthdays today, but in preparation for my own, I wanted to find out more.
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Jul 28, 2023 | 
smanewstoday.com | Alyssa Silva |Marisa Wexler |Katie Napiwocki
Even under perfect circumstances, flying with kids can be tough—especially for the first time. So, mom Samantha Lackey planned extensively and hoped for no surprises. She researched airline accommodations, including seating, bathrooms and wheelchair storage, and how to get through TSA with her daughter’s medication. Of course, there were certain things Samantha couldn’t anticipate—like how her four-year-old would react to turbulence. Luckily, little Stella decided quickly: she is a big fan.
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Jul 28, 2023 | 
smanewstoday.com | Alyssa Silva |Brianna Albers |Marisa Wexler |Katie Napiwocki
When I was in college, I had a professor doubt my abilities because I was disabled. I started struggling in their class early in the semester, so I went to their office for two reasons: to get extra help and prove I was determined (and doing what I could) to excel in the class. Instead, the professor undermined what I was capable of and claimed the class was beyond my comprehension. Because of my disability, they assumed I’d never be able to hold a job or amount to anything. Great logic, right?
