People with SMA often have very little privacy. Because we lack the strength to independently complete most activities of daily living, we rely on others to accomplish those tasks with or for us. Even intimate activities that warrant total privacy, such as bathing, dressing, and toileting, require the…
From Where I Sit - a Column by Halsey Blocher
In the late summer of 2021, we took a family vacation to Orlando, Florida. Our resort had an accessible outdoor pool, so we couldn’t resist spending a sunny morning relaxing in the glittering water. As I sat in my mom’s lap, my smaller, floppy body held upright by…
My feeding tube became a part of my life amid a series of illnesses that required hospitalization when I was 13. I’d lost a dangerous amount of weight as my body burned through every available resource in an attempt to fight off infections. I was far…
As humans, we so often want everything to fit into tidy little boxes with labels that clearly identify the contents. But while we may be able to draw a few parallels, life isn’t exactly like organizing a storage closet. It’s more complicated than that. That knowledge doesn’t always stop us…
It’s been nearly two weeks since most of the U.S. “sprang forward” into daylight saving time (DST), and no matter how many times we go through the biannual time changes, it always seems to take this long for everyone to fully adjust. Some people may even still need to update…
I still remember exactly what I was doing when news broke that Evrysdi (risdiplam) had been approved by the U.S. Food and Drug Administration (FDA) in August 2020. Up until that point, it had been a pretty ordinary day. It took only a moment to become so…
It’s hard to say exactly what impact rare disease awareness has had on our world. What has it taught us? Those of us with SMA and other rare diseases are keenly aware of the benefits that years of advocacy, research, fundraising, and education have brought to our disability communities…
Who would’ve thought that something as mundane as straws could become a hot topic? Yet in recent years, they’ve been featured in countless news stories, sparked debate, and been targeted by well-meaning environmental movements. I like to think I know a few things about straws. I’ve been utilizing them daily…
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…
