In a message dated 12/11/00 12:08:24 PM Eastern Standard Time,
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>
>  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
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