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Forwarded message:
From:   [log in to unmask] (Tebay, Wendy)
To:     [log in to unmask] (PDList)
CC:     [log in to unmask] (athome), [log in to unmask] (Kirta), [log in to unmask]
(PAN), [log in to unmask] (Return requested)
Date: 95-08-03 12:41:17 EDT
 
Hey everyone,
 
I called about the upcoming conference on the possible link between
environmental factors and pd (which is actually going to be held in
Research Triangle Park, NC, Sept. 17-19) and requested some info, as I
intend to go and stir up some trouble there.  (I told her how I'm
trying my best to do it here too!).
 
The subject of the workshop is to determine which areas related to
this topic (environment and pd) should research focus on.  She said
some attendees believe that a link does exist, with probable genetic
influence on susceptibility, but also that a few of them aren't
convinced of any relationship between the two.  I don't know how many
other of us victim-types are going, but I'm thinking of not only going
down there armed with all the arguments and info I've got (some of
which I've posted to the list), but I'm also thinking of  soliciting
input from everyone on the list as to:
 
1)  what, if any, outside causes (pesticides, metals, solvents, etc)
have they been exposed to that they feel may have played a role;
2)  at what age were they diagnosed with pd (the younger they were,
the more likely environment was a factor);
3)  what ideas can everyone come up with as to the specific research
areas related to this topic that they think researchers should focus
on in the near future.
 
Even tho' our input would be more anecdotal than scientific, if
they're looking for ideas on which directions their research should be
focussed, they've gotta start somewhere, and I think we can provide
some useful input.  I really think we'll get to all kinds of solutions
faster if they seriously consider our input and if related information
is better disseminated outside of the medical circles into the
mainstream.  In this way, research and it's conclusions will not only
be influenced by abstract science (not that I'm against science - I'm
a physicist/engineer), but it will take into account also the
perspective of those who  have to live with this annoyance every day,
an entirely different perspective from those researching it.
 
Any and all inputs are welcome.  You can either post them to the list
or send them to me directly at [log in to unmask]  Already  I know of a
few good examples to relate - I've already heard myself of two cases
of high school age women being diagnosed with it and even a 4-year old
(whom Pat Schark recently brought to our attention).  These don't even
include my own experience, and that of many of this list, whom have
also shared their stories in the past.
 
As much as I support the Udall Bill for getting more research $$ for
PD, I also advocate more dialogue between researchers and "victims".
Not only could this help guide their focus and allow us to be better
able to keep abreast of developments and provide our 2 cents worth
(which is actually worth more than 2 cents), but think, it might even
save them some money!!  What could be better than having people with a
vested interest in finding both causes and solutions willing to help
for free?  Sounds like a bargain to me!
 
Well, I really hope this stirs up some interest and everyone who's
interested  will participate.  I'll leave people's names off of the
info I pass on to them if anyone does not want their's given out.  My
main intent is to not necessarily given them a list of names, but a
tally of sorts of the types of substances (and anything else in our
lives) which we feel may have played a role, a general chart showing
the overall age distribution at which people were first diagnosed, and
a list of research ideas that hopefully they can make some use of.
Might as well make good use of the information highway!
 
Also, if anyone else is planning to attend, please let me know.  Maybe
we could all get together ourselves and do some additional
'brainstorming'.
 
I'm looking forward to this!  (....Stir that pot good!)
 
Wendy Tebay