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07-01-2009, 09:19 PM | #1 | ||
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Member
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I just wanted to say thank you to Linda H for her wonderful offer. (been having a hard time keeping up with posts..) I would so go to Scotland, if it would help....
Since Rick has taken on project leader for this one, I am awaiting marching orders, very calmly... |
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07-01-2009, 09:46 PM | #2 | ||
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In Remembrance
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i consultingly agree tbat fiona would make a great representative/
paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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07-01-2009, 10:16 PM | #3 | |||
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In Remembrance
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They don't make 'em like Tricky **** anymore.
While I admit to being Project Instigator, I would prefer to be part of a small project committee rather than Leader of anything. If Fiona and Girija are going to hawk it at WPC, I'd like them to be in the Core Group. Maybe two more of the Editors' choice and max out at five. The Core Group would, briefly and quickly, put together a one page description by consenus of what they think they are working on to put before the Editors. The Editors will, briefly and quickly, merge the Core Group's ideas with what they think they are working on. Presumably this will be a group of subjects. Then individual Contributors will be assigned to an Editor who will scan back through the archives and collect the good stuff, paste it into a Word doc, and present it to the other Editors. Once everything is in a big pile, the Editors will put it all together. See, that wasn't so hard
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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07-02-2009, 04:47 PM | #4 | |||
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In Remembrance
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Going back through and listing only those who have explicitly agreed to use of their posts and those who have offered editorial time:
Posts: Myself, Fiona, Bluedahlia, Lindylanka, Sasha, Girija, bandido1, chicory, olsen, WendyS, RLSmi, Shake 'em up, Violet Green, TommyI, Editorial: Myself, Fiona, Lindylanka, jcitron, bluedahlia, bandido1, chicory, LindaH, olsen, RLSmi, Shake 'em up, Sasha, Violet Creen, Who have I left out and who have I miscategorized? When do we have enough? Is the Core Group approach acceptable? If so, is five a good number? Do we want to nominate and vote? I don't care if I lose, but if Fiona and Girija really take it to the WPC they need to be in the thick of it.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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07-02-2009, 05:33 PM | #5 | ||
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In Remembrance
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rick, you can use my posts but please clear them with me first for everyone's protection.
paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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07-02-2009, 11:43 PM | #6 | ||
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Junior Member
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This is a great project, well suited to the talents and resources available, unlike prior data base projects that need additional resources to do effectively. For example, I am writing proposals to fund development of personal health records However, I hope to start the design of the PD diary before getting funding.
I was a contributor to Linda's book, as a participant on the Univ Toronto PARKINSN listserve, and recently several of us have been encouraging Linda to update her excellent book. As Linda has indicated, the project was more difficult than imagined initially, with many revisions, not unlike any writing project. But it was well worth the effort and something to be proud of, and ]n my opinion, It provides a window on the world of PWP that only we can provide. I do not think I need to be on the central writing group, (you seem to have a talented group assembled. i will offer my posts on this forum which are few and the previous Brain talk forum, where I wrote more. I will go a step further to offer some of my emails to address the topics that I have the most contact with, most likely the issues relating to the application of web technology to political action, and advocacy generally that have germinated in ths forum (including braintalk). My friend who is dean of information sciences at the Univ of Maryland has written about on-line communities as an academic subject. WE have been doing just that, creation of online communities, with no prior experience. I would think no matter what positive or negative influences that the Pipeliners have had, it was a result of this forum, that this group existed and continues to exist. A significant group of the active participants of this list have been official pipeliners, and many continue to be, so for better or worse the ppp is a product of this forum... a subplot of interest that should be told In sum, an important audieence for this book, in addition to medical people will be sociologists and information scientists, and we should go beyond the posts to fill in gaps as Linda did and tell the whole story. Perry Quote:
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