A celebration of breakthroughs, mine and my parents’
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know that for now, I’m where…
Author Archives: Connie Chandler
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…
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
- The sustained intensity of indelible memories of SMA, and of Jeffrey
- SMA culture is changing, but love and joy are still the best treatment
- Preclinical study finds antidepressant may boost SMN
- An invitation to the community to experience joy together
- SMA Europe online tool helps patients find clinical trials