What I would’ve missed out on if I’d said no to life with a disability
“Thanks for inviting me on this trip,” my 9-year-old friend Forrest said to me last weekend. His parents were in the gas station convenience store, and we were alone in the car…
Author Archives: Connie Chandler
To find a team of caregivers, I had to rethink my ‘ideal’ criteria
In my favorite movie of all time, “The Princess Bride,” there’s a scene I love because I can relate to it and have learned a valuable life lesson from it. And today…
Why can’t my new wheelchair help me dance?
I recently got a new wheelchair! Thanks to the good folks at Numotion, I’m happy with the upgrades, including a new seat cushion, a phone holder, and headlights. My friends have been asking me what it’s like to be…
When SMA symptoms make me feel ‘Muppety,’ I rely on my friends
“I’m feeling a bit Muppety today.” It’s an adjective I made up for myself years ago (meaning “like a Muppet”) because there are just some aspects of having a neuromuscular disability that are hard to…
Recent Posts
- Finding inspiration in the new year to make a positive impact
- High-dose Spinraza regimen approved in Europe for spinal muscular atrophy
- A spreadsheet reset helps me manage my caregiving team for the new year
- Ringing in the new year with public health insurance woes
- Adding torso exercises to breathing exercises shows gains in SMA