PART II
This is to inform everyone that, by request,
THE HOW DID WE GET HERE ANYWAY SURVEY is being extended until Jan. 31, 2002.
Included in two sections is the story behind the request. If you have not
participated, there's no better time than the present.
Subject: FW: HOW SURVEY
The HOW DID WE GET HERE ANYWAY SURVEY will close on January 31, 2002. That
will give everyone who wants to do the survey an opportunity to participate.
There will be no additional extensions.
Bonnie, sorry for not replying sooner. You have so much food for thought in
you post, I got to thinking about what you wrote and didn't realize I hadn't
read the entire message! We are extending the time. Send the survey
wherever you wish.
It is with deep sincerity that I express my gratitude for your interest and
enthusiasm. May I add that everyone who contributed did so with the same
caring.
When this whole thing began, and Mario and Maryse offered to help, they did
so because they, too, were interested and believed that the survey was
worthwhile. All of us hoped that with a good sample we might spark the
interest of someone in the scientific community. In addition, by doing the
survey, we became participants not onlookers! Believe it or not, we even
cut it by four pages to ease some of the burden!
Now, as I understand it, there are about 1500 PIEN members and probably an
equal number on Dr. Lieberman's list. We posted on both. I found a PD
organizational list and not only posted but sent packets to various groups
throughout the US, Canada, and Nova Scotia. We hoped the membership of
both lists plus the additional posts/mailers would supply the large sample
we needed. In truth, it would be unfair of me if I didn't tell you that I
was informed by a number of experienced, caring, long-time list members not
to be disappointed at low numbers which previous surveys delivered.
Together we would have to wait to see.
I still believe that we were born with genetic mutations that made us
initially susceptible to particular events/occurrences in our lives. This
does not mean that the events/occurrences are all the same for each of
us-though some might be. We come to the PD umbrella from many different
paths. To go one step further, I believe we each had/have precursors along
the way. While the HOW DID WE GET HERE ANYWAY SURVEY is an unscientific
survey, I feel it had/has the potential of pointing to some of these
commonalities.
As you might suspect, that large sample we hoped for hasn't occurred. Any
numbers we can add through your efforts are more than gratefully accepted.
We still believe that this survey is worthwhile and more than appreciate
your efforts.
Most sincerely,
E of the headdress
P.S. Please inform your friends that data sheets will be shared with
all participants.
Subject: Re: HOW SURVEY
Edith
I am sending this survey to everyone I know. Just forwarded it to someone
in The Yukon and Holland. This is so worthwhile.
Because I am single with pd, live in Prince Rupert, B.C. (40 miles south of
the Alaskan border) and don't know anyone up here that also has pd - I had
this idea to get a singles site going. I posted to this idea on a few pd
sites but couldn't get anyone interested. I figured it was because no-one
knew me. I finally asked Bren and Nan on the PLWP MGH site if they could
get it going. They jumped at the idea and it was up and running that day,
March 12, 2001. It is in Yahoo. I wanted the MGH format where you have
thread capacity, spell and grammar check, e-mail this to (all the goodies)
but that costs money - or takes more computer knowledge than I have. If one
and half million people have pd in North America (1/3 of these are Canadian)
think how many of these may be single. Bren and Nan made themselves the
Founder's of the Singles Site which is inconvenient at times because we
can't change anything and they are so busy - but heh - don't look a gift
horse in the mouth. I made myself the promoter. We have 68 members so far.
This is what I send out Internationally.
PLWP Singles Club was created for single people of all ages and on-set who
have P.D. It is an International site for singles with P.D. to meet, share
information and promote advocacy. Could you please pass along this
information to your Support Groups members, PD publications or newsletters.
The url to this site is
http://clubs.yahoo.com/clubs/plwpsinglesclub
Due to my own self interest I am aware of lots of sites and if you like I
can help you promote it or send the urls to you. I just got an e-mail back
from my friend Sam Stein in Burney Calif - I sent him the survey this
morning and he has already completed it and sent it in. I am also on
Editorial Advisory Committee of the Parkinson's Post. I would like to send
this survey to them. I'll see if it is to late for the November issue.
OK about putting it on the singles site - If you want me to do it - and the
reason I asked you to do it because you are someone new, catches the eye
don't you think. I may ask Sam, or Clem to do it if you don't - anyways
what do you want put on the post? What cover letter? Also I know sites in
England, Australia and Ireland or do you want to have your survey basically
North/South American?
I really think this is such a bloody good idea I will help get your survey
out if you send me exactly what you want sent out and the attachment so
people can do it right away and pass it on.
Bonnie
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