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Hi Beverly. I'm glad to hear you too are interested in "our stories". It sounds like we have some things in common, other than what I prefer to call My-Opportunity-From-The-Universe-to-Grow-Bigtime! This way of referring to PD is so much better for ME in that it allows me to focus on the positive gifts as opposed to feeling dis-eased... I too am 49, single, and hope to finish my PhD (forest ecology) as "soon as possible". I too am self-employed and work from my home, love to write (it's a big part of my work), live life ABSOLUTELY as fully as possible, witness my Opportunity, turn ever and always to my faith, and definitely share the joy! Onset for me was in 1993, in the middle of my dissertation research. Diagnosis didn't come until 5 years later when I could barely walk; the docs (even at prestigious medical centers here in the NW) were telling me it was psychosomatic... The diagnosing neurologist in 1998 told me that he felt it was because "they" didn't like having an articulate, knowledgeable woman who could recite in perfect sequence the onset of symptoms, that "they" failed to diagnose. I had every symptom in the book, and then some! Further, whenever "they" offered a tentative diagnosis I would ask them how we were going to test that hypothesis. "They" labeled me as a "hysterical, over-involved woman" in order to hide their ignorance. Quite a story... Stories are very important. Would you like to co-author a proposal with me to compile them? How about we submit it to MJ Fox Foundation? All proceeds to go to education, research, etc., assuming the grant covers our time and expenses. Maybe a teeny royalty to the compilers, in the event either or both of us needs some income (that is the case for me at present, but I hope it will change soon... lots of irons in the fire!). Two heads are better than one, and it sounds like our two heads are in similar places... How about our bodies? I'm on the central Oregon coast. Where are you? To the folks on the listserver, whatcha think? Will you write your stories and send them to us, allowing us to select from them the best that we are able to, so as to present the most eloquent and compelling Faces of Parkinson's? We will do well by you. I can promise that from myself, and from what Beverly has said of herself, I'm sure she's in the same category. As before, if there are a lot of replies to this I (we?) may need to reply generically... please understand. I'd like to see the stories from the caregivers also. You know, both 'sides', yin & yang, etc. etc. etc., otherwise affectionately referred to as the-kit-and-the-caboodle OR the-whole-nine-yards, and somewhat more restrictively in academic circles or other bastions of intellectual proclivity... a holistic perspective. Let's hear what you have to say, and if you're willing to write your stories!! Be well, Marla Marla L. Gillham PO Box 343 Yachats, OR 97498-0343 541.547.4090 [log in to unmask] ----- Original Message ----- From: Beverly Forte <[log in to unmask]> To: <[log in to unmask]>; <[log in to unmask]> Sent: Monday, June 11, 2001 6:31 AM Subject: Telling our story > I, too, believe it is important to document our stories....of hope, of fear, > of learning, of love, of struggle, of life. I am 49 and was diagnosed in > 1992. I am a single parent, self-employed writer and trainer with a PhD in > psychology- behavioral medicine. I live life as fully as possible - more > fully than most people I know without the challenge of chronic illness. I > see clients and go in public even when my symptoms are obvious. I witness > about my illness, my stuggle, even my fears, but then share the joy I found > in living every day fully, with my faith being the source of my strength. > > I am dismayed by much of the medical patient literature and websites that > paint despair for our future and by the stories that it is not a huge > challenge to us and those who love us to live with this illness. > > I would love to compile the book of our stories. Is anyone else interested > in helping with or contributing to the stories? > > Beverly Forte > [log in to unmask] > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn