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11-30-2006, 07:38 PM | #1 | ||
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In Remembrance
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Well of all the letters I fired off to editors during election week, this little comment made it into this week's U.S. News and World Report
1 of 1 DOCUMENT Copyright 2006 U.S. News & World Report All Rights Reserved U.S. News & World Report November 27, 2006 Monday Campaigns for a Cure Parkinson's disease patient Michael J. Fox is uncomfortable and suffering, but he is not a desperate patient as described by Lerner in his interview. Fox never fails to call this illness a blessing and his experiences, as a result, enrichment to his life. PAULA WITTEKIND Florida State Parkinson Action Network Coordinator Parkinson patient for 17 years Rockledge, Fla. With bad formatting, it looks almost as long as the heading and signature...lol Im a national yapper now; good time for a study to come out saying women naturally talk much more than men. Oh and a point was made- don't call us desperate patients and describe us as pitiable. So Houston, we have a problem.....everywhere you look. No one is going to save you....we are the hope. Will you think about tracking one treatment in the wonderful database we are launching that took us five years to get with lots of help from good people. NOw it's perfect but must stay updated. Think about it - just one treatment - and you don't have to enter it. Much communication works. BUt you have to have the knowkedge to have anything to talk about or make them look at it from our view.Then the real feelings come out - like the two aforementioned.......oops slip of the tongue - tell that to Mel Gibson. Thanks for reading the ramble.
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paula "Time is not neutral for those who have pd or for those who will get it." Last edited by paula_w; 11-30-2006 at 07:43 PM. |
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11-30-2006, 08:52 PM | #2 | ||
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I was pretty excited that night.
Quote:
michael |
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11-30-2006, 09:01 PM | #3 | ||
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...and you thought yours was a ramble, Paula. Oh by the way. I appreciate all the effort that you put into all you do for the Parkinson's community. I know it must feel like a thankless task at times, so.......Thank you, Paula., and thanks to all the other advocates and researchers out there who work so very hard.
michael |
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11-30-2006, 09:51 PM | #4 | ||
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Senior Member
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Paula,
keep on going, as you must, and be as vocal as you are for as long as you can! You are a treasure as are all the people who push for a better future for PWP's. I for one have no objection if those who seem to want us to look pitiable instead see that we are ------ off by being expected to lie down and take this disease. Especially those wearing the snazzy gold-plated blinkers. I wonder if they will ever get round to using the databases to ask the real questions, from real people with real lives. Or will they just use it as another pharma tool.... I could go on at length about why I feel that the whole overview of PD needs a re-definition, but I would enter into the realms of rant, rather than ramble I am currently fantasizing about developing an outfit on the lines of the gear they use so that men can feel what it is like to be pregnant, but for people who I would like to get to understand what it is like to walk in our shoes ............... any suggestions, both for the outfit and the people !! Actually, I would rather this disease than the one that makes people see those with long-term conditions as pitiable - you meet much nicer people! |
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12-01-2006, 08:34 AM | #5 | ||
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In Remembrance
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Thank you Michael and Lindy.
Michael I think we all go through stages of "craziness" for lack of a better word, but it's often a productive craziness. Joel Havemann, of the La Times just wrote an article called "The Best medicine may be hope." We got permission to reprint so here it is at: http://grassrootsconnection.com/HaveHope.htm He refers to our diagnosis as our own "personal 9.11". Havemann has also written a book A Life Shaken: My Encounter with Parkinson’s Disease
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paula "Time is not neutral for those who have pd or for those who will get it." Last edited by paula_w; 12-01-2006 at 10:37 AM. |
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12-01-2006, 03:22 PM | #6 | |||
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Our material and intellectual advances have outrun our moral progress… It is not enough to have the power of concentration… but worthy objectives upon which to concentrate."
Together we can move mountains |
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12-01-2006, 07:13 PM | #7 | |||
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I read Joel Havemann's article in last Sunday's LA Times and it was nicely done. I've put his book on my Christmas list as I've heard really good things about it and am looking forward to reading it. And I'm hoping we can work it out for him to come and speak at the next NPF young-onset convention in Chicago next July. He's very well spoken and has great insight that I hope he'll share.
Thanks Paula for putting his article on your site. I hope everyone takes a few moments to read it. Todd PDTalks.com
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Todd . . |
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