My caregiver held the toothpaste tube in both hands, meticulously squishing it flat from the bottom all the way up to the nozzle. I laughed: “It’s OK, I have a whole new tube ready to go in the closet.”…
When people think about exercise, they often picture movement that is visible, measurable, and easy to quantify, such as miles walked or weight lifted. But for people with SMA, staying fit can look…
School is out in my area, and summer has officially started! Living with SMA means that my independence is made possible through a network of practical, daily support from friends in my community, and caregiving is…
Like most humans in the world, I do not like to cry in front of other people. My life with SMA does not allow me a lot of grace to conceal my physical weaknesses and vulnerabilities. It…
My aunt, who doesn’t throw anything away, recently sent me an artifact from my childhood: a pink paper pamphlet titled “Meet Connie.” I was diagnosed with SMA type 2 when I was…
Caregivers are an essential aspect of my life with SMA, because I need assistance to do most of my activities of daily living. But I am learning more and more that caregiving…
I’m not one to turn down a compliment, but as a woman living with spinal muscular atrophy (SMA), I do not consider physical balance to be among my strongest skills. So,…
There are many disabilities out there that significantly affect people’s lives but are not immediately noticeable to the general public. That is not the case with spinal muscular atrophy (SMA). As an adult living with SMA type 2,…
I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable…
In my life with SMA, my favorite thing to talk and write about is my caregiver community. They are truly exceptional and amazing people who faithfully show up, step up when my needs change, and…
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