By corkie on Thursday, April 29, 2004 - 09:17 am:

I haven't heard anyone say they have outgrown this. Is my daughter just going to get worse as she gets older?

By oldlady on Wednesday, September 29, 2004 - 06:44 pm:

Nope. I'm 47, everything still flops and bends like it did when I was a kid. It won't get "worse", but it won't get "normal" either.

By trish on Thursday, September 30, 2004 - 06:33 am:

Just found your site and reading messages 29.4.04 I dont hold much hope for getting help really, just hope I can manage what mobility I have left

By Dumbass Bastard on Monday, November 01, 2004 - 03:32 pm:

well i think that all of that is about canues that roll around in the sky and lose their third wheel while scientists figure out how many pancakes can fit in a dog house! but it could be about how fish sticks drive in 7 wheeled boats that sink in the lava at rout 66 while scientists try to find out why dogs lick their balls.

By helen sunshine on Monday, November 15, 2004 - 05:51 am:

I think the best thing to do is develop lifestyle habits which prevent suffering. I have found that dry heat and very very gentle excercise helps. If you live in a cold country it will be worse.
Information sharing is also an important way of helping each other as we have to figure out how to deal wih our condition ourselves.