i was totally suprised when the advice to run over it with hard work because it never gets worse turned out to be wrong. if i'd know how aging was goimg to be with the cp, i'd have done some things differently. -----Original Message----- From: Anee Stanford [mailto:[log in to unmask]] Sent: Saturday, October 30, 1999 10:16 PM To: [log in to unmask] Subject: Re: Aging with CP (was pain) Hi all- I think another part of the equation is to make kids, young teens, and parents awar so that if and when these problems (incresed fatigue, pain do to spasticity, or pain due to joint brakedown, and the host of other things) that they are real...that these things do occur and that they are part of CP albeit some of them are secondary to it. When my family doctor refured me to a othopedist when I was 16 because of the sholder pain I was having the othopedist basicly told me in no uncirten terms that this wasn't happening, that I had no reason to have pain, that there was nothing othopedicaly or otherwise wrong with me...I saw this basicaly as a denile that this whole issue even existed. I went to a nurologist a year later who didn't seem to know or accept anything either but she said I had osteoarthritis did give me a rx for Lodine 300mg which helped some what. I had never heard of this problem before I started to experience and started trying to find out about CP and aging. I would have really appreciated knowing that there was this problem with aging and CP before hand so I would know it was really real and liget. Also Knowing about the existence of these type of problems ahead of time would have helped me deal with the onset better emotionaly. I knew the pain was real but I did not know about what this was untill I joined the list and this was/is one of the most frustrating parts. Anee Webmaster, CPIC http://www.geocities.com/aneecp/CPIC.html In a message dated 10/30/1999 10:33:28 AM Central Daylight Time, [log in to unmask] writes: << I agree that we have to make people realize that Cerebral Palsy doesn't disappear once a kid with CP turns 13 years old. Even on this list. . . (I'm thinking back to a post from a mother who has a kid with Cerebral Palsy who wanted to see her daughter playing hopscotch without her wheelchair). I have had people tell me that I could walk and get over CP later in my life and as a result I have depression and a suicidal history.:((( >>