>
>
>Dear List Family,
>
>To those of you who contributed information to the short survey:  I thank
you all for your efforts and your graciousness.  Some of you responded
under the most trying conditions!  It was more than obvious that you cared
about the idea, its purpose and were interested in whatever results were
found.  Unfortunately, there weren't enough surveys returned to draw any
conclusions.
>
>The letter  below is a copy of the one I sent to Barbara Patterson.  I
have since apologized to John Cottingham whom I forgot.
>
>>Dear Barbara,
>>
>>I have a two-fold task here today.  The first is to thank you and Simon
for all you've done.  There would be some lost lambs out there were it not
for the List and the gracious efforts on the parts of those involved.
>>
>>My second task is to seek advice, comments, hopefully, your approval and
cooperation regarding what I have to relate.
>>
>>Mario, Marco and I would like to develop a survey based on subject matter
that pertains to us:  illnesses, medications, symptoms--those subjects that
involve the interests, concerns, and realities of daily living that come
from PIEN members. We believe that there are enough of us on the list to
offer data that will be pertinent to all of us.  It is data that will give
us a picture of what is going on around us.  Further, if we are truly
fortunate, this survey will supply data to someone somewhere who might
eventually make a difference in our lives.
>>
Along with working with Marco on the survey, it will be my job to keep the
membership informed about our plans, ask for input that pertains to our
topics, and, hopefully, plant a bug of importance in the members' minds.
By that I mean that each member of the list is an extremely vital piece to
the
"PD-family" puzzle whether he/she be patient or caregive.  We need
everyone's cooperation.  We need input!
>>
If our numbers go high enough, we could easily have the largest sample of the
>>"PD-family's" living information around.  That takes us to a downright
hope.  Someone mentioned that there are 1600 members on the PIEN List. If
we could get 1500 members to contribute, we'd be in data orbit!
>>
>>As a team, we have a very vital concern.  As a team, we want to protect
the privacy of all concerned.  Further, we believe that more PIEN members
will contribute to the survey when they know their identities are protected.
>>
>>We now turn to you for advice, assistance and our proposal.  Mario has
graciously agreed to do the spread sheet(s).  You are a PIEN owner and
highly respected by all(Simon, too).  When the time comes, we would like to
have the surveys sent to you.  All identifying information, names and email
addresses, etc., would be removed with felt pen, etc., and be replaced with
a number before being sent to Mario as attachments.  By doing this everyone
would be protected and information would be supplied that might, at least,
improve someone's quality of life!
>>
>>If you agree with our project and accept our proposal, please give us
permission to post this letter.  Our aim is to work together for a better
life, and it's going to take our whole village to do it!
>>
>>Respectfully submitted,
>>E of the headdress

Barbara and  John have graciously agreed to our proposal.  Now it's up to
the rest of us.

Now that you've read the letter:  I took Marco's survey and the short
surveys of all those who volunteered them and included those subjects into
the present survey.  I have divided the survey into sections, and I'll make
the printing as large as feasible.  Please remember that some wonderful
miracles are out there, and we may be able to contribute just by
volunteering some incognito information.  Please also remember that this
survey is based on interest and caring.  I am no analyst nor am I a
professional at surveys.  Marco will critique, but any blame will be mine.
I, along with Mario and Marco, am just one who would move mountains to see
all of us well!
>
For my part, what I need from the membership now is input.  Is there
anything you would like included in the survey?  Another thing to think
about is opening the survey to your support and caretaker groups.  That way
those who don't have PC's etc., will also have representation.

To save time, please post suggestions directly to me.

Thank you in advance for your efforts.
E of the headdress






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