It is always an interesting and fun challenge to navigate my limits and needs while living on my own with SMA. I have a wonderful community of friends and caregivers who come to my house throughout the day and night to assist me. Still, I am constantly on the…
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At the beginning of the year, I felt a sense of calm because I finally had enough nurses to complete my home nursing staff. There was no pressure to find a replacement for a nurse leaving my case. That kind of calm is priceless in my life with SMA.
As a college freshman pursuing a degree in special education, I assisted in two nearby elementary classrooms. The students all had moderate cognitive challenges. I remember a few even now: Roger, with his suspenders and his family’s pigs (Fred and Ethel), and Tina and Richard, adorable twins. All three had…
As someone living with SMA, I’m really thankful for the creative products that have been designed and invented to make mobility easier for me. Some of these are add-ons to my wheelchair that we’ve purchased, some my dad has made or modified, and some are things my friends have…
Like many pop culture enthusiasts, I currently devote my Thursday nights to the HBO Max series “The Pitt.” Hailed as the most realistic medical drama on TV, the show follows an emergency department crew in a Pittsburgh hospital, led by veteran physician Michael “Robby” Robinavitch (played by Noah…
To its credit, “The Beauty,” a new sci-fi, body-horror miniseries from Ryan Murphy, co-creator of “American Horror Story” and other acclaimed projects, dives deeper into the topic of genetic editing and disability than most sci-fi shows I’ve seen. Typically, as in “Jurassic World: Rebirth,” genetic editing is framed either as…
How can I possibly show the deep appreciation that I have for the caregivers in my life with spinal muscular atrophy (SMA)? This is a question that burdens me often when I feel weak, inadequate, and overwhelmed by their compassion. But today is Caregiver Appreciation Day, so…
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…
One of my rules is that nurses cannot care for me when they’re sick. Although this creates challenges, I don’t want to risk exposure. Because I live with SMA, the repercussions of a virus or other cause of illness on my health would be severe. Another thing that creates…
Countless events shape the course of our lives: marriage, career changes, parenthood, the loss of loved ones, and health crises, to name just a few. The list is almost endless. After eight years of marriage, my husband, Randy, and I decided we were ready to start a family. Overnight, my…
