April 24, 2008 at 4:57 am

Hai jack,
Hows ur brother now………….as far as my case ……….pls give the total support of ur family to him. Make him comfortable in every concern. Dont leave him alone. Make him turn from left to right and vise versa in the bed to get rid of the bed soars. Tell him that this is to be defeated by himself..he should have more will power to fight this thing. Nothing is impossible. in my case i myself am not beleiving what i am today. Its my second life. Now he is like a baby to take care in every aspects. May god bless him to recover soon.



November 5, 2007 at 12:20 am

I would appreciate if you would post that info about renting power chairs while traveling. I do walk with AFOs & a cane most of the time, but if I really want to walk a lot, a power chair would be nice. I do own a folding manual chair, which I know I could take on a trip, but then my husband would have to push me, as I have a permanent broken collarbone on my right side. Well, that is true, but the real truth is I am terrible at pushing a wheelchair myself, it is a lot of work!


June 20, 2006 at 6:31 pm

Hello Crystal,
Our foundation has a liaison in Broomfield, CO, which is the Denver area. Her name is Ann Brandt. Try to contact her at 303-438-1428


June 19, 2006 at 2:10 pm

And welcome to this forum. We become a family here because we feel what you feel. We understand. If you will let us know where you and your uncle are, we might be able to find a member in your area and we might have a liaison in your area who can visit you.

NEVER NEVER NEVER NEVER give up hope (not with this syndrome).