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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