Sunday musings:

It is a beautiful day here in central New Jersey (USA) and before I go
digging in my garden I wanted to convey some thoughts about this support
group, the istserv and the people. Thank you Barbara Yacos for giving me the
starting point to give form to my thoughts.

The list: I tune in many times a day with great expectations: to read about
a person's developing story, to await a reply from someone to whom I posted,
reading new comers' bio, and ofcourse keeping up with the Udall bill. I
admit that I take this wonderful resource for granted. Barbara Patterson,
the owner of the listserv and the greeter to all newbies, deserves
recognition for all the hard work, headaches and frustrations managing a
list this size must entail. To those who sign on and are greeted again &
again by long and not necessarily interesting posts of lists and messages
'pushing' Udall cards and other paraphernalia of grass root lobbying
(Barbara Schirloff and I are guilty), I say thanks for your patience and
willingness to keep ordering  and writing postcards.  The ambiance of this
listserv is conducive for the sharing of thoughts, experiences and
knowledge. Successes, failures, doubts, fears and very personal 2 AM
thoughts on 'facing the enemy' are offered by trusting open souls.

The people: expressions of warmth, caring, willingness to share feelings,
knowledge and personal experiences are the core of the forum. The roster of
active voices change, the topics of interest are like waves; sometimes a
storm brews about a particular issue and then it quiets until the next
person raises it. The 'circle of elders' (my designation of respect, not
age) are thankfully always available to send the list their advice and/or
suggestions about how & where to obtain additionally needed information.

The Gate-Keeper and Archives: one doesn't really appreciate
something/someone until they are lost! The months between the old system's
expiration and John Cottingham's developing software to gain access to the
memory banks and history of this listserv were HELL! While I saved certain
pieces of information on my hard drive, I regarded the archive as my
personal library source and knew that I could always go the stacks and
search. I hope that we will continue to have this access to our collective
psyche! I know that a resource "Library" also exists on the IRC chat
channel, again thanks to John and other hardworking, behind the scenes
people. And while I have, in the past, joined that merry group of people, I
have a lot of trouble typing the dialog and therefore much
to my sorrow, have not recently taken part in that rich and fun experience.

How do I fit into this living organism? Aside from the obvious benefits
described above, I continue to grow as a person, draw strength from the
collective energy and try to give back information and most definitely
affection to the members.  Discovering the internet as a tool and you, the
people, as an extended family keeps me interested and active. What would I
like to see happen? We have often extolled the vehicle of the listserv and
the membership as a unique living laboratory. We know that the information
we exchange has a value that is not available anywhere. We have, in the
past,collected and tallied information about our meds, symptoms, personal
and family history, etc.. We tried to postulate PD's relationship to other
diseases, i.e., diabetes. We have looked for possible causative factors in
our genes, the environment, personality traits. We keep searching for
alternative medications, share our stories of surgical results -- and all
this is in the archives! I want to find a way to organize and present these
'pearls' as a continually evolving resource. Among our membership we have
incredible talent.  There are teachers, scientists, librarians, medical
professionals, --- there are 900 + complete lives. While we are all busy
with our private lives and coping with our debilitating condition, there
must be a way to avail a portion of ourselves to invest in a common purpose.
I am seeing this happening with the passage( I hope) of the Udall bill. My
previous lack of interest in politics has only been surpasses by my lack of
knowledge in the political process. I cannot believe that I am reading
information about the legislative process because I need to
know what comes after Kassebaum and the Senate committee's unanimous
approval?  The same curiosity is spurring me on to find a way to benefit
from our stories.

I would like to ask each of you - and not only the active voices, but all
those who read the postings - to think about ways to compile information
that would benefit the majority of our membership. What are our interests?
If you scan the subject topics of our daily mail, you will see topics we
have been talking about. There are a number of us who enjoy surfing the net,
we could have a list of "information needed" topics and report back to the
group. The recent postings about drugs that are dangerous are good examples
of information that could be kept up to date and provided to new comers. A
questionnaire could be given to all new comers asking for information
similar to Patrick Martin's 900+ Survey and the result of analysis could be
fed back to the group and to the scientific community. Perhaps we could
generate interest for research?! Development of pharmaceuticals, clinical
and surgical discoveries, trials, news items about the brain and other
related topics, nutrition, exercise, etc. are all subjects that we share an
interest. Fortunately, we have members who regularly provide information to
the group, we can ask for volunteers to select their areas of interest and
do the same. Ofcourse, the beauty of this forum is that you can delete this
whole post, which has grown like my zucchinis with all the rain, and I still
derived benefits from having put form to my thoughts and provided me with an
avenue to express these thoughts.

Thank you, enjoy the Olympics and tomorrow call all the representatives who
have not co-sponsored yet. John Walker provided lists with e-mail
addresses,etc. Both Barbara Schirloff([log in to unmask]) and I would be
happy to e-mail lists to anyone requiring the info. We thought that this may
be a better way to handle the volume of mail.
The list menu is:
Senate Labor and Human Resources Committee
House Committee of Commerce
House sub-committee on Health and Environment
List of non-sponsors, both House and Senate
You can order in any combination you desire.
Hope to hear from you.


Margaret Tuchman (54, dx 1980)
[log in to unmask]

"Service is love made visible.  Generosity is caring made active.
Friendship is trust made manifest." - William Arthur Ward