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Edith, I can't thank you enough for the time and energy ( a declining commodity for us PWPs) that you have put into the How Survey. I don't go back to my doctor at Duke for 3 months (if I can make it that long without having to have my meds adjusted) and I will be glad to mention to him about taking a look at the survey. They are doing a big study at Duke now on the genetics of PD. As a matter of fact there is a PD forum that Duke is putting on in April. Maybe I will have the chance to mention it to someome then. I'll let you know. Would you just send 1 copy of the survey with the results summarized? If you would go ahead and send it via 'snail mail' I'll just take it with me in April and hopefully I can give it to the right person then. The mailed out copy just looks much better to give i think. I'll be glad to reimburse you for the postage if you will let me know how much. I'm sure that can get to be expensive. I figure if we all give a copy to our neurologists it will eventually get in the hands of some doctor who really takes interest in it and runs with it! At least we can hope. I for one would not have even had the know how to set up the survey to begin with. Thanks for taking this on for all of us!! I am kinda new to the list so just out of curiosity, how long have you been diagnosed with PD? I figure your knowledge of the subject must unfortunately come from years of personal experience. And just out of curiosity too, what did you use to teach? Thanks again. Let us know anyway we can help you. Debra Sutton 353 E. Haywood St. Wendell, N.C. 27591 ----- Original Message ----- From: "edith love" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, March 09, 2002 12:54 PM Subject: The Survey, a Dream and Activism-From Where I Stand > Good morning, List Family, > > This is a copy of something I sent the other day. It sort of "tailed" at > the bottom of the page in oblivion. I'm sending it again because I need > feedback. Good or bad, I can handle it! > > You all know how deeply I believe in the HOW survey. I'm no > scientist. I'm a member of the EVERYMAN CLAN. The only credential I carry, > other than my educational credentials, is CARING. > > However, it is my belief that the paths for PD, PD+ and for those of us > under the PD umbrella, though different, begin at birth. I feel there are > benchmarks, precursors on each of the paths-either alike or varied-that > finally progress to diagnosis. > > Now the reason I'm saying all this is because I have a dream. Yesterday > someone graciously and kindly humbled me by noting, "Edith's survey". I > thank that person, but I must clarify. The survey belongs to everyone. It > doesn't matter who wrote it. It is an > EVERYMAN property, and the reason it wasn't "copywrited" is because we want > it to spread. > > Bless Mario. He asked me what I was looking for in the survey results. My > response was and is PRECURSORS! > > I would like to see the survey in physicians' offices whether or not the > surveys ever reach our data sheets. > If enough dilligent medical professionals pay attention to and/or compare > what their own patients' surveys indicate, who knows what miracles may > occur! > > My neuro team agreed to look at our data sheets. Next month when I have my > appointment, I'm taking copies of the survey with me. Should you wish to > join me, I'd be willing to send fresh email copies, even use the US Postal > Service where necessary as I have been doing. THIS IS A LABOR OF LOVE FOR A > CAUSE AND PRAYERFULLY A CURE! > > Jorge and Bob, you are two medical professionals I respect and admire. I > invite you to participate and to comment. > > Finally, in response to posts about hospital care and activism: It occurs > to me that no one knows more about how we should be handled than we do. > Since support groups are valued, accepted andrespected, what are the > possibilities of support groups making contact with the PR officers of > community hosptals to set up one or more "PD, etc., in hospital educational > awareness sessions"? Such a meeting could be held where PDers, etc., meet > and feel comfortable enough to share. > > Respectfully submitted, > E of the headdress > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn