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07-10-2009, 11:46 AM | #71 | ||
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[QUOTE=bandido1;534306]--editing my own posts!
Looks to me like the stage is set. Paula will be consulting with Doc John and/or other Administrators setting up a new forum with restricted participation by present core/editor volunteeers to be recompiled (soon??) by Rick. Look for the new "Parkinsons Perceived Project" topic when it appears at your next logon.Then try adding in just one of your suggestions for a separate thread e.g. Introduction Preface History symptoms diagnosis treatments YOPD Social Relations PD and the Workplace the role of science, researchers, pharmas,medical community etc, Patient participation in the process the best of the forum posts misc commentary PICK UR OWN THREAD Friday July 10 addition: A chapter covering clinical trials " " " the pipeline project Note the use of the REPLY function with quote deletions to add this .
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Be not by whom the first is tried nor the last to lay the old aside. . |
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07-10-2009, 02:16 PM | #72 | |||
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In Remembrance
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Unless you have specifically declared, you are not on the list and now is the time to correct that.
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, paula w, vlhperry, Ronhutton, indigogo, Editorial: Myself, Fiona, Lindylanka, jcitron, bluedahlia, bandido1, chicory, LindaH, olsen, RLSmi, Shake 'em up, Sasha, Violet Creen, girija, LindaH, indigogo, Now, one more time, if you are not listed then there was some dubt about your intent and now is the time to be plain. Pegleg? Perryc?
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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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07-10-2009, 04:53 PM | #73 | |||
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Two voices reached out and grabbed me, because I can relate to both. Carey and Fiona. Since giving up mirapex I too have a softer focus. It actually has changed my personality, but this thread is not about Mirapex (I wander off the trail).
Information in a concise pkg is always good, but I have worked on a book project before and I will say up front it can rapidly run into a bad case of "too many cooks spoil the stew".....in this case too many voices may do the same thing. I don't have the energy for such an ambitious project, but I wondered how complex it is to publish an e-book online. One could download it for a specific fee using paypal or whatever credit card options available. and that would cut out the great hunt for a publisher and the costs involved in producing and mailing a hardcopy. (not to mention storage and inventory control.) I have no idea how this is set up, but I run across it with increasing frequency, so it can't be too difficult Like Carey, I am wanting control over my comments -how they are used and the right to edit them. Many of the discussion threads I have commented on are very opinionated and represent a cross section of perspectives. For the most part I think I have been sane and tried to write with humor and candor so I have no serious concerns. Just exercising caution. Someone said K-I-S. I agree and would add keep it focused. What the heck does "Pakinson's Percieved" mean? Just curious.... Maybe I'm just old and tired but without a powerhouse project leader, this idea will never get off the ground.
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I would never die for my beliefs because I might be wrong. Bertrand Russell |
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07-10-2009, 05:32 PM | #74 | |||
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Senior Member
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I agree with Rosebud, and will repeat for the third time that you should not wait to get blanket permissions in advance - choose the comments you want to use and the context they will be used in, and then ask those posters for permission to use those specific quotes. This is the kind of permission I believe I have given - I want to know how my words, and what words, will be used before I say yes - I then may say yes to some and no to others.
You will not ever get started if you wait for permission.
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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07-10-2009, 05:46 PM | #75 | ||
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In Remembrance
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hey rosebud,
can you stick around a bit? can you send a link to an ebook? someone mentioned this before and i think it was a good idea - have a cut off date after which people are no longer added but contributions will still be accepted. linda h expressed concern about too many people as well. waiting on forum- in touch with docjohn. wanted to add - don't drop out! instead organize! 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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07-11-2009, 06:09 AM | #76 | ||
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Senior Member
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An e-book is simply a book-sized PDF document that has been saved in a universally accessible format for web distribution. Software that helps do this include adobe acrobat pro and indesign (page layout programme). These two pieces of software are not the only ones used, but the most common. The real issue with e-books is whether they are distributed free via the web, or whether they go through a marketing process, i.e. an online shop, or somesuch. As most books nowadays are produced digitally anyway, using one of the major page layout programmes, it is a simple matter to save to PDF, and in fact this is a method that is used not just to produce e-documents, but as an integral part of the editing process, allowing multiple editors the ability to annotate and edit books during the whole production process. It also allows for elegant book design from the outset which can make a things a whole lot more interesting for proof-reading etc. Currently there are several e-book readers being developed, some of which use a proprietory format for e-book delivery. It is important to know, however, that distribution of e-documents using e-readers is a very small fraction of the e-docs that are distributed in many ways; peer-to-peer via email, web sites, intranets, and on digital media such as CD, DVD, pen drives, etc; broader distribution via websites, online book retailers and so on. So publishing can actually mean something much broader than it used to be, as is the definition of 'book'. This gives the possibility of an awful lot more than the traditional paper-based object. For instance, it could be possible to create a CD/DVD in time for the WPC at very little cost to produce, and still be in the running for a 'real' book as soon as the means to do so appears. Or even to produce sample chapters to whet the appetite? It gives a lot of possiblities.........
lindy |
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07-11-2009, 06:54 AM | #77 | ||
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I am so impressed by this thread...just not ready to take on any projects right now other than summer vacation with my boys. On a challenging day, even that seems impossible!
Still, here's a resource you might want to know about if you don't already: Lulu.com -- a self-publishing site for creating print books, ebooks, CDs/DVDs, photo books, etc. The staff is super nice, helpful and professional. The prices are shockingly low and the services flexible. (We used them for the book (script & lyrics) of a musical last month to market to theatres.) Just a thought...good luck! |
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07-11-2009, 12:31 PM | #78 | ||
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Member
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I used juno.com a couple years ago to self publish a book titled "PUT IT UNDER THE MATTRESS". ---a semi-confidential look into what was then blossoming as the mortgage loan crisis that ultimately led to our economic recession. Oprah's people were apparently not interested, nor was Bill O'Reilly's crew so I limited my out of pocket self publishing expenses to just a couple hundred dollars. While no one else paid much attention to the title (or the author) I heeded my own advice and missed out on losing 40% of the value of my retirement portfolio(LOL) I went into T Bills until about 2 months ago and am now just beginning to take it from under the mattress. My caretaker/spouse believes the scientists,researchers, educators, and others totally uninformed about PD and other presently incurable neurological disorders/diseases will also ignore any atttempt at patient driven education. Neverheless, I shall remain a volunteer. What else can I do other than die? Bob C
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Be not by whom the first is tried nor the last to lay the old aside. . Last edited by bandido1; 07-11-2009 at 01:30 PM. Reason: typos |
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07-11-2009, 01:10 PM | #79 | ||
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Junior Member
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Better late than never, I would be happy if you accept my contribution as one of yours
Anne |
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07-12-2009, 02:55 AM | #80 | ||
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Quote:
Jaye |
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