Thanks so much for having a board ike this for people with disabilities.....I get such support from reading stories of "you guys" making light or giving words of encouragment
to others in the same situation.
I have Syringomyelia (with a syrinx {a blockage} from C2-C5 blocking 82% of the width of my cord) by the grace of God and lots of steroids drugs, I am nuero "OK". I can get up and walk and talk and use my extremities....I can't feel my right leg in a portion or my left arm in a portion, I have extreem twitches and tremors in my legs, I have issues of control anything from the waist down and I get awful headaches and burning and ripping in my neck and back if I stand longer than a 1/2 hour......... but I am functioning. I have had two surgeries (one a bogus Tethered Cord Surgery by the genuises at TCI in NY) without any relief.
When I go to Disney I cannot tell you how many dirty looks I get for getting out of my scooter to let my hubby load it onto the bus because I cant really turn to look at where I am aiming that scooter onto the ramp. Cant tell you how many times I hear teenagers call me a "line cutter" if I decide to leave my scooter outside a ride and walk in. Cant tell you how many hums and complaints I hear when people have been waiting for a bus for a long time after the fireworks and we get have to load the scooter while they are standing there.
EVERYTIME I read a simliar story, or one of support for you guys to each other, I feel so much better. I KNOW I AM NOT THE ONLY ONE. I would trade the energy and the ability to walk or feel my leg and be able to stand up for 5 hours on a bus line than have to travel in the D**N SCOOTER!
Thanks again for being so supportive
, I always keep it in the back of my mind when I hear those heartless people and their comments!

I have Syringomyelia (with a syrinx {a blockage} from C2-C5 blocking 82% of the width of my cord) by the grace of God and lots of steroids drugs, I am nuero "OK". I can get up and walk and talk and use my extremities....I can't feel my right leg in a portion or my left arm in a portion, I have extreem twitches and tremors in my legs, I have issues of control anything from the waist down and I get awful headaches and burning and ripping in my neck and back if I stand longer than a 1/2 hour......... but I am functioning. I have had two surgeries (one a bogus Tethered Cord Surgery by the genuises at TCI in NY) without any relief.
When I go to Disney I cannot tell you how many dirty looks I get for getting out of my scooter to let my hubby load it onto the bus because I cant really turn to look at where I am aiming that scooter onto the ramp. Cant tell you how many times I hear teenagers call me a "line cutter" if I decide to leave my scooter outside a ride and walk in. Cant tell you how many hums and complaints I hear when people have been waiting for a bus for a long time after the fireworks and we get have to load the scooter while they are standing there.
EVERYTIME I read a simliar story, or one of support for you guys to each other, I feel so much better. I KNOW I AM NOT THE ONLY ONE. I would trade the energy and the ability to walk or feel my leg and be able to stand up for 5 hours on a bus line than have to travel in the D**N SCOOTER!
Thanks again for being so supportive
