Dec 082008
For me and others with physical disabilities, comfort is a game of inches. An almost imperceptible shift of the hips or tug on a leg can separate “just right” from “totally messed up”. My body’s unique curves and twists, combined with a form-fitting seat, only increase my positional sensitivity. To give you an idea of my fussiness, here’s a typical exchange between me and my nurse:
ME: Would you move my pillow to the right?
BELEAGUERED NURSE: Sure. How’s that?
ME: Down a bit.
NURSE: Okay.
ME: Slightly to the left.
NURSE: There?
ME: Up a little.
NURSE: That’s where it was to begin with.
ME: Perfect.
LOL now THAT converstaion brought back a billion memories rushing in… James was famous for move my leg this way or my arm that way and in the end we were right back where we had started but I guess the moving made it seem different… He had no feeling from his shoulders down… but dont let his foot be crooked on the foot rest or he would hurt all over… Makes perfect sence to me.
thanks for the good memories!
Laura
Hi Mark,
You probably don’t remember me, but I commented on one of your posts about music several months ago. I’m a regular reader and have had Arthrogryposis since birth. The disability is often mistaken for MD at first glance.
But I digress! I’m seeking your advice, based on your post about positioning and past ones about clothing. Do you wear a cape/poncho in the winter? If so, where did you get it? I wear a jacket, but it’s becoming increasingly difficult for people to tewist my arms into the sleevesw. I did a thorough online search and found a few possibile companies, all in California, but I’d like input from a wearer.
Hey, congratulations on your new position. I’m in northeast PA and am a Community Organizer with an ILC.
Thanks,
Keith Williams
wreg60@aol.com
I think it’s more like a game of millimeters