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I'll mail a copy. Mario is working on the data sheets. We should have something by then. He's waiting a bit for our numbers to increase. I'm on my 6th yearof whatever I have, Debra. My first neuro said I'd have 20 years before symptoms progressed. He was supposed to know about neuro muscular degenerative diseases. He guessed wrong. That's what makes us all so special. No one really knows! Re the genetic theory as a " genetic-mutation theory" at birth and the precursors that go with it: It's just what it is-a theory. I went over all I the symptoms I was exhibiting and went back as far as I could remember. Some of the signs were there in elementary school. I have definite precursors. What I'd like to know is whether anyone else shares them. Then, too, my younger child was in an absolutely horrible accident in which many of her friends died. She had amnesia and was somewhat a medical veggie.Among her injuries was severe head trauma. It's a long story. The important thing about it is that in those days-twenty + years ago-no one knew what to do with her type of trauma. As a result, doors were shut all along the way. I knew she could be reeducated. :Even now I can see them shake their heads. My job was to keep pushing a boulder up the hill! until I proved it! I made a case study out of it in order to attempt to be objective and to control my own emotions. I still had to support us. Three years of our lives went into those sheets for medical professionals as well as for myself It was my hope to write about it, but she didn't accept herself or the truth about the damage for over 22 years. Head trauma victims are, "another life to experience". Today, part of her is in the 40's; the other part, a permanent 16. Only now she knows who she is and admits that she has cognitive damage. She masks her disappointment, but she has worked her posterior off to accomplish. She was gifted in the language arts and is very conscientious, had proved that with effort and time she could accomplish. After 20+ years of running from herself and life, with the assist of state rehab, she is a certified massage therapist, is completing equine massage, and is working on canine massage certification. She has reason to be proud of herself! In writing all of this, my intent is not to be longwinded. My intent is to mention that symptoms I dealt with so long ago are happening to me. So when you ask me about the basis of my writing, re my spot under the PD umbrella, I'm a Pilgrim First Class! I'm learning as I go along. Head trauma I know something about! Mainly, my writing is about what everyone(include me) is experiencing. Sometimes I can literally feel the need, emotion, frustration through the keyboard. Sometimes a thought comes-at strange times-and must be stated. I only know we 're here to be here for one another. Last but not least, I became the teacher I said I'd be when I was five years old. My experience has been varied-many grade levels, many loves-from grammar, reading, composition to Enlish as Second Language to Current National and World Affairs-better classes than some they now offer. While I have to admit I was headed elsewhere, I fell in love with junior highers and recognized this to be the last stand for many. I couldn't pass it by. I was the teacher whose reputation preceeded me. High expectations, lots of homework, classroom open early AM, lunch, PM, with very few disciplinary problems. I loved every minute of it! Thank you for joining me. E of the headdress Subject: Re: The Survey, a Dream and Activism-From Where I Stand > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn