Dear List Family,
Will wonders never cease! Thank you, Ivan. You couldn't have brought up a
subject closer to my heart!
To all newcomers and list family members who haven't participated, I am
reposting the cover letter for an already existing survey that has been on
PIEN for some time. It's the HOW DID WE GET HERE ANYWAY SURVEY, AND IT RUNS
UNTIL THE SECOND WEEK IN NOVEMBER.
We want answers, too, Ivan, and this may be a beginnng. While it's not a
scientific study, it may shed light on enough information to catch some
scientist's eye. We feel IF THE SAMPLE IS LARGE ENOUGH, and that CALLS FOR
COOPERATION, we may be the windows into our own illnessess! This survey is
an opportunity for PDers, PD+ers, and the still undiagnosed to finally have
a voice!
We are proud to say that our survey has received accolades for its depth
and its intentions. We're proud of it and would like to share it with you!
Is it time consuming. For some it can be. Is your illness time
consuming? You bet. Is it worth your time and effort to find a way out?
You answer that one.
There's a copy of the survey on PIEN. I have plain text, formatted and
email copies available. We have a way to get the survey to you! I can be
reached at: [log in to unmask] and Mario is at: [log in to unmask]
He is doing the spreadsheets.
COVER SHEET FOR HOW DID WE GET HERE ANYWAY SURVEY
>>>
>>>>The idea for the HOW DID WE GET HERE ANYWAY SURVEY formed as the result of
>>a post (seen below) to PIEN on May 9, 2001.
>>>
>>>Dear List Family,
>>>
>>>Have you ever taken the time to think about how we got on this PD/PD+ road
>>>we travel? Have you ever wondered what illness, what accident, what
>>>environmental cause brought us here?
>>>
>>>This is a List Family thing, and I need your help. I would like to see how
>>>many of us may have had the same things happen to us that might have led us
>>>on this path. I'm interested in numbers-not names, etc. I even have my
>>>med team interested in looking at the information which will go to the List
>>>Family first. For example: Have you ever had mono or an illness, even a
childhood disease with a very high fever? Have you ever been diagnosed
with the>Epstein Barr Virus or had a diagnosis of Chronic Fatigue Syndrome?
At some>point in your life, have you been in an accident or a fall, etc.,
did you suffer some>kind of head or spinal injury? Did something happen to
your vision befor you were diagnosed? Did you have poor balance as a
child? What about>Restless Leg Syndrome? Consider, too, herbicides and
pesticides. Did you>work with or around them? Did you suffer from any
health problems because
of them? Did you suffer from memory problems and/or depression?`
>What we're looking for is the possibility of common ground. Something or
some things caused the dopamine to disappear. Everyone else is
researching. Why don't we?
>>>
E of the headdress
>>>
>>>Everyone who responded to the post with information had his/her
>>contributions included>in the survey wherever possible. Mario and
Michiel not only contributed to the survey, they volunteered to assist in
its development. Michiel and I>will work on the survey; Mario will do the
spread sheet(s) and Maryse>offered to translate the survey into French for
some of our international>members. What you see is a concerted effort. We
are a team, and we are looking for commonalities!
>>>
>>>Any success we achieve is success for everyone. Anything we discover is
>>discovery for all of us.
>>>
>>>We urge you to participate. In addition, share copies of the survey with
>>other PDers and support groups in your areas. Let's be counted!
>>>
> Developed by,
>>> Edith Love
>>> Mario A. Gonzalez
>>> Marco De Michiel
>>> French Translation,
>>> Maryse Schild
>>>
>>>I believe that PIEN members are capable of miracles!
E of the headdress
>>>
>>>
>>>
>>>
>>>
>>>
>>>
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