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On 10/19/96 David Langridge wrote: >What is certainly evident is that the bulk of advice contributions come from >subscribers who have had PD for several years or their PD is particularly >severe and also a lot of requests for advice are re worst case >scenarios.This I believe tends inevitably to promote an unbalanced view of >the disease because there is no input from the thousands and thousands of >sufferers who could be jogging along quite happily without any of the awful >side effects mentioned so frequently.If you look at the results from >independent clinical trials it is evident that the incidence of particular >side effects are much less prevalent than would appear to be indicated by >list 'gossip' >Also in the list one tends to hear most noise from or about pd people with >difficult or intractible problems. >Having said all this I still think the list is great and required reading >for anybody seriously interested in this baffling disease but although in >the past I have been active in promulgating its merits to the 'unconverted' >I am beginning to wonder whether there should be a 'HEALTH >WARNING'--'Reading this might confuse you and seriously damage your peace of >mind.Access denied to anxiety prone people'And when somebody from a National >PD organization said to me recently 'No we are not keen on giving out >information about the Internet as we have no control on what appears and >might appear to be endorsing the views or information put forward' I began >to wonder whether she was making some sort of valid point.? **************************************************************************** ************** David, I really don't know what anyone SHOULD expect from a forum on Parkinson Disease. I personally, am so glad that these people who have PD much worse than I do, are willing to take the time and SHARE their experiences with us. For those "thousands and thousands who are jogging around quite happily without all those side effects" all I have to say is "God Bless 'EM", but I don't believe they have an insurance policy which states that they WON'T get some of these side-effects later on and then they will wish they had listened to their elders!!!! As far as anyone having control over what is put on the Internet, there are MANY of us who have fought very hard in the U.S.A. to keep it that way. Also to keep what you read in a library, and what you check out from a library, as confidential information. To read uncensored and to speak uncensored is the most important asset we have in the U.S. To me that is the most important part of the PD Listserve also. So we don't always agree with everything everyone says--- When you talk on the telephone all you have to do is smile to put a smile in your voice, but on email you can SMIRK at the keyboard if you want to, and it still won't put a smile in your post. When someone finally figures out a way to convey meaning( "it's not what she said, it's the way she said it") to email, then part of this misunderstanding will all stop. In the meantime---carry on!!!! As Ever, Marjorie Moorefield just another librarian (with PD)