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In a message dated 12/11/00 12:08:24 PM Eastern Standard Time, [log in to unmask] writes: > > Direction of the List > > I have felt for some time that the list was moving away from > high profile PD issues and more towards social chit chat or > what ever seemed to be the topic de jeur. Since this seemed > to satisfy some of the list subscribers I quietly, but not > silently, observed the transition. > > As a caregiver my interest in the list is to get as much > insight as I can into the day to day fight of each PWP and > caregiver as it relates to PD. This I believe will give my > wife and I as many tools as possible to deal with the day to > day fight. > > Equally important is the long term fight for a cure. In this > regard I am always looking for the latest basic and clinical > research efforts and the progress that is being made. > > Finally, PD advocacy is high on my radar screen because the > day to day fight and our long term PD fight did not have a > profile commensurate with the scope of the problem. Hence > political advocacy reached the playing field. > > The kinds of things that I would keep to a minimum on the > list include most of lifes joys and sadnesses. We all have > life experiences of birth, death and illness. This is the > common bond that all people share. Any forum public or > private could be used as a vehicle to express those life > experiences. This may not be the best place to do that. > > This list , I had hoped, would focus on the PD experience of > the participants and the efforts of others to improve the > quality of life for those of us that are caught up in this > lousy disease. > > Managing the technical (hard) information about the disease > may actually be easier that managing the non-technical > (softer) side of the disease. > > The hard side deals with drugs, surgery, therapy, > injections, walkers, wheel chairs tremors, rigidity etc. We > seem to do a good job of policing mis-information in this > area. That is an important component. I have found this > aspect of the list to be invaluable. > > The soft side deals with the emotional trials, the > loneliness, lost memories, and many of our life experiences > that may be related to PD, often are unrelated to PD yet may > impact PD because it is a neurological disorder. We do not > like this area to be policed. > > Poetry, praises, sympathies, day to day courtisies and > rudeness are all part of the soft side of life. They are > common to all of us and because of this commonness they are > thought to be "in our province" or within our right of free > expression. This makes them very difficult to reign in. > > Unfortunately this may be exactly what the list needs to do > if it is to serve our PD needs first and foremost. While we > can not deny ourselves of these feelings, perhaps this list > should not be used for that pupose. > > I think it may be time to reign in the softer more general > part of the list and expand the more focused commentary > about PD. There is a time and a place for everything. > > This place (The List) is for PD sharing. The time for a > shift back to a PD focus may be now. I for one would welcome > that change. > > Respectfully, > > Bob Martone > WELL SAID, Bob ! Don Karen & Don Berns 110 Delano Dr. Pittsburgh, Pa 15236 [log in to unmask]