[paula_w]

in PD chat room. when you enter the chat, you will be in the lounge and see the pd chat room on the right hand column. This, however does NOT get you there lol. You must scroll down using the arrow on the top menu bar that goes across.

pasting agenda here:


Here's a tentative agenda written last night for the chat - feel free to rearrange or modify:

1. mission statement outline

http://neurotalk.psychcentral.com/thread52201.html
scroll down to indigogo

2. lindy's ideas - we can pick and choose. I like numbers 4 and 5, suggest calling #5 case studies and go into backgrounds of people in detail
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1. an email database of orgs
2. an email database of patient contacts
3. a database to include existing data on PD research (drawing from already existing resources)
4. a database that will collect a wide range of data from patients about the experience of PD, (in the form of an objectively targeted questionaire)
5. a collection of patient stories documenting their more personal or subjective experiences of living with PD.

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3. presentation of ideas for our own database research. Jaye has some non-database ideas to add which she can talk about.

4. naming - [Opinion alert] IMHO i think it should include the words international or global,patient of course and neurotalk...we want to make neurotalk a forum used by health professionals and it will validate us immediately because it is already an established site [cited as one of top 50 by Time.com] also suggesting that we drop the 's from Parkinson's to parkinson....hate typing that ' and others are doing it. No one seems to want to move to yahoo. but its great for emailing and storage.

5. this is already a lot....it would be helpful if people could post here what they want to say ahead of time and we could reference it instead of typing everything from scratch

6. Bob's ideas - are you looking for a petition of some type for Daschle or examples of letters? Don't know if we have time tomorrow but that is what this forum and yahoo email is about. Suggest creating and send through either of these formats. Keep the project going. Someone start one and ask for additions and edits from others through email.

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Hopefully the topics can be limited to database development existing and/or proposed. As for Lindy's other suggestions: 1. Unique name looks ok but not a priority at this time. 2.areas of activity= database development 3. mission statement- See #2 and add the word "patient" 4. I suggest we simply develop a new thread titled something like "HELP WANTED--CONTACT SENATOR DASCHLE" I'll bet Curious and a few hundred others will open it! No need for anything more formal but Lindy could probably do an outstanding invitation for the thread directing volunteers to our project. My two fingers don't work very fast and my head is often too fuzzy to be that creative.

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7. Assignments

8. Rick I am assuming you are still working on the wiki. Is Anne able to attend the chats? I included the wikis in development on my mjff patient input survey as a method of communication with multi-disciplinary health professionals .

9. Who knows how to write a database? [giggle]


I'm sorry if I left anything out....tired. I've been posting on this forum more than ever today - all day long.

I will pm doc john about this meeting. We need him to be there. As usual, always, feel free to add, subtract or not agree

[Curious]

i'm sorry i can't be there. i have to get kids picked up from school.

pm me if there is anything you need me to do.