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06-20-2009, 11:13 AM | #1 | |||
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In Remembrance
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I think it is important that we do something before we lose our energy. I have talked to Fiona and she is on board, so I would like to propose a joint effort that could accomplish a lot with minimum trouble.
We have briefly entertained ideas of communication directed toward various segments of the medical and research communities, the newly diagnosed, the public, the orgs, etc. I propose that we produce a book - its working title "Parkinson's Perceived: A Handbook for Understanding" and its authorship credited to "The Parkinson's Collective." Those are both fluid and will no doubt change, but will do for now. The goal will be to use our knowledge of PD to educate in our own voice. For the first time, a patient initiated, produced, and promoted communication of the realities of PD. The great part is that we have already written it. Here, in this forum. My understanding is that we each control the rights to our own posts. In those posts we have said enough to fill a dozen books. So, the first level of participation is open to all of us - simply granting the anonymous use of your words in this effort. No matter how sick you are you can be a part of it if you wish. The second level is a group of editors, the more the merrier. Their first job will be to take the names of those who have signed on and go back through the archives in search of material. At the same time, by identifying subject areas we would shape the book. Then add a preface, design a cover, and get it out there. It would be non-profit and probably not generate any money, but if it did, I propose that it be used to seed the second project, whatever it might be. This is unique enough that it should be possible to get some media exposure and publicize our views, perhaps to a bigger audience than we expect. So - what do you think? I will be the first to release my postings to the plan as stated. Anyone else? -Rick
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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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"Thanks for this!" says: | DejaVu (06-22-2009), lindylanka (06-22-2009) |
06-20-2009, 12:49 PM | #2 | |||
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Member
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Not that I think my contribution to this forum was educational in any way, but feel free to use any of my posts.
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"Thanks for this!" says: | DejaVu (06-22-2009), lindylanka (06-22-2009) |
06-20-2009, 01:32 PM | #3 | ||
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IMHO - until we wrest pd from the neuro bread and butter role it plays, there will be no help for us. Remember, they were educated by the drug companies.
I'm not into throwing blood bags but think it will take something dramatic to get attention - we don't have to shoot a neuro but SOMETHING BOLD is required. I'm thinking - WAY OUTSIDE THE BOX! A book is fine but a movie would be better! THEN the book would be read. |
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"Thanks for this!" says: | DejaVu (06-22-2009), lindylanka (06-22-2009) |
06-20-2009, 05:54 PM | #4 | |||
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In Remembrance
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Maybe a video would be a good second project. It will pose more problems - i.e. not every one has a camera, more difficult distribution, etc. The compilation of our past conversations would be simple. Right now, I think we need something doable.
Your first paragraph would be great in the chapter on the relationship with our doctors, BTW Quote:
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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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"Thanks for this!" says: | DejaVu (06-22-2009) |
06-20-2009, 06:45 PM | #5 | ||
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Senior Member
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Agree with your idea Rick, and would be more than happy to help.
Also agree that a video is a good longer term project. Struggling a little with a dental cycst, but will think on aabout these great ideas! Lindy |
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"Thanks for this!" says: | DejaVu (06-22-2009) |
06-20-2009, 07:35 PM | #6 | ||
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Member
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by all means include it! This board has such a wonderful ability to touch others, expressing our shared sense of pain that is still infused with hope and determination to somehow make things better - When I was first diagnosed, I would sit in my cubicle at work and sign on to this site (well, it was a different one in '04) a dozen times a day just for the support implicit in knowing that others were going through similar difficulties and understood - and yet they kept going and kept seeking answers. I think a book is a great idea!
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"Thanks for this!" says: | DejaVu (06-22-2009), lindylanka (06-22-2009) |
06-22-2009, 06:30 AM | #7 | ||
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Senior Member
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Given a little time a video could be possible, and there is more than one way to skin a cat. Would love to make a viral video, but that would need a GREAT idea. Any suggestions? In the meantime I think that your book idea is fantastic, wholly doable, and would give us all a morale boost. Am happy to volunteer as an editor, and have no problem in any of my posts being used; hope to see more people support this, perhaps there should be a thread especially requesting permission, or something similar.
Lindy Quote:
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06-22-2009, 08:59 AM | #8 | |||
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In Remembrance
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I had really meant for this thread to serve as kind of a "sign up" thread, but maybe we need a more clearly dedicated one. I'm not sure, though, that we have the support needed. I mean, granting permission is about as easy as it gets and the idea hasn't exactly elicited a flood of such yet.
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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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07-01-2009, 07:55 PM | #9 | |||
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In Remembrance
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...so who else is going to belly up to the bar?
You can get off light, just turn over all your griping and moaning over the last few years to us. We make no promises other than to keep things anonymous, but you could be part of something important without doing much more than you have already done. If you REALLY want to make a difference, there are plenty of seats at the editing table. We are getting closer to critical mass, but aren't there yet IMHO. We need more of the long time posters to give us permission. If you maintain email contact with any of them, please ask them to stop in. If you are tired of talking and want to do something, just raise your hand. While we can be done sooner, wouldn't it be neat to launch the book by handing out CDs at the WPC with a nice poster? I propose that to be our goal. Anybody second the motion? I'll amend it to say "Send Fiona and Girija to Scotland with 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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07-01-2009, 09:05 PM | #10 | ||
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Junior Member
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I have just a few posts but you're free to use them and I would be willing to help with editing.
I've received much help from your posts, Rick, on the previous forum site. Thank you! |
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"Thanks for this!" says: | reverett123 (07-01-2009) |
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