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> > >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 >> >> >> >> >> >> >> >> >> >> ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn