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To all: *Since this is PD Awareness Month *and Murray and various others have been providing us with easy access information &/or sites related to PD *I have taken the liberty of putting together the following ORIGINAL REQUEST / RESPONSES made in December and asking that this be addressed now by any who might be able to assist in the effort. . . Everything Paul stated in December holds true for so many people without the means or ability (for whatever reason) to educate themselves about Parkinson's Disease - This is a project that I had already started working on over the past couple of weeks when I ran across the following messages that I had filed under Advocacy / Ideas - It's something I'm doing anyway - so the more the merrier. . . ! Anyone interested - please let me know OFFLINE and I'll update the list this week - . . . and in the beginning there was . . . Subj: Re: Just an idea Date: 12/16/99 3:47:48 AM Pacific Standard Time Dear list: Over the weekend, I bumped into an acquaintance who I hadn't seen in 3 or 4 years who had developed PD, as I had, in the intervening period. After a short while, it was painfully obvious how little he knew about the disease even though he was in his third year with it. As it happens, he and is wife are not computerized, so my intended suggestion to get on the list would have gone nowhere. But I began to think about all the other pwp who are not on the list and wonder what their extent of knowledge was. Aside from what I learn on the list directly, the references which pop up from time to time about other sources of info are invaluable and leads one to the sites fro information gathering. For example, I recently added 'Ask Dr. Lieberman' to my list membership and receive as much mail from that source as from the pienet. Anyway, I digress. I was wondering if there would be any sense in trying to mount an informational campaign, centered say on Neuro's offices, in an attempt to make more pwp aware of the list. Perhaps someone with PR skills could compose a flyer which we could download (for uniformity) and then with Neuro permission, leave a batch of them in waiting rooms or on bulletin boards for patients to pick up. Any merit? Any other ideas? Or should I shut up. Paul H. Lauer From: [log in to unmask] (Joan Hartman) Paul.....great idea......go for it......originally when diagnosed I called three hospitals in my area (at my neuro's suggestion) looking for support groups and all they could give me was their once a month mtg which didn't have too much to offer.....people just weren't friendly, just speakers and no group interaction..I felt so alone with this....and I seemed to need the support in the middle of the night when I couldn't sleep....and I was getting really scared .by all I was reading that could/would happen to me........I was still in the "who me?" "why me" denial stages and feeling so alone...then one sleepless night I stumbled on the dumpster gang site and somehow found out about this LIST.......and all of a sudden there were 1,800+ people out there just like me with PD ....it helped me overcome that feeling of being all alone with PD.....it got me to the point where I could actually say the words "I have PD" outloud where I couldn't before.....I told my neuro about the list and said had heard about this List but never told me about it........and yet it helped me so much......pls do what you can........if we come up with a flyer, I'll be sure to give it to my neuro and the 3 hospitals...... Joan Hartman From: [log in to unmask] (Cathy Morse) Paul, I like the idea. and I'm sure my neuro would be happy to have the reference to give to his pateints. Let me know if I can do anything to help. And please keep me informed on this project. Thanks, Cathy Michel Margosis <[log in to unmask]> wrote: Support groups all over the country should be able to provide much info too. Michel Hilary Blue wrote: <[log in to unmask]> Ah, but do they? Perhaps they could use a little incentive! Carole Hercun <[log in to unmask]> (Carole Hercun) wrote: Hi Paul: I am amazed at the paucity of information available in the average neuro's office, even in the medical centers like Johns Hopkins and St.Elizabeth's. The wonderful resource that is this List was only discovered by me (and I'm sure by others)by accident. So please don't shut up. Suggestions, anyone? Michel Margosis [log in to unmask] The neuro's office is not a library, meaning that it's no place to get information unless it comes directly from the neuro himself. The neuro's office is for treatment! Public libraries, organizations like the NPF (National Parkinson Foundation), APDA (American Parkinson Disease Association), etc. can give you mounts of information about the disease and various support groups. This list is but a tiny fraction of the PWP population and it is fraught with misinformation as well as correct information, and it is often difficult for an untrained person to differentiate. Thus, do not accept anything stated here unless properly verified or corroborated because the wrong information may be hazardous to your health. Michel Margosis 'Carpe Diem' Carole <[log in to unmask]> (Carole Hercun) wrote: Dear Michel: Perhaps the neuro's office SHOULD BE a library, or at least a gateway that points you in the right direction towards accessing resources like the national Parkinson's organizations, and this List. When faced with the davastating diagnosis of an incurable, chronic, degenerative neurological disease, it would be helpful to learn about the wonderful available support and education that many patients and caregivers don't know is out there. This was reinforced for me when I volunteered for the N.Y.C. Parkinson's Walk and sat at an information booth on a N.Y.C. streetcorner giving directions to the Walk. So many people asking for brochures, etc. So many people starved for information about this disease. I am a health-care professional, so I know where to look. What about the others? Fondly, Carole From: Paul Lauer <[log in to unmask]> Sent: 17 December, 1999 9:18 PM Subject: Just an idea - version 2 Dear list: After originally proposing the idea of using neuro's offices to spread the gospel of the list and encountering a big yawn from the list, I gave up on the thought. .....together in a one-pager? If someone has the writing capability but doesn't know all of what to include, we can call for suggestions and (he) (she) (they) will get flooded. For my part, I will work on an implementation theory with suggestions and input from anyone who cares to chip in. Happy Holidays Paul H. Lauer Joan Hartman wrote: <[log in to unmask]> (Joan Hartman) Paul..........I think people have not been reading the emails with Christmas shopping and other busy stuff this time of year.........I think we OUGHT TO DO IT.......I will help in whatever way I can......how about taking this on after the 1st of the year.....when things slow down a bit......I bet other members will agree to be in on it.........wha'cha' think????? Joan From: [log in to unmask] (Cathy Morse) Paul, I concur with Joan. first of the year would be a good time for a project like this. I will help. Cathy From: Paul Lauer <[log in to unmask]> Joan: As I assume you've been reading, the reaction to the idea has been mixed and more importantly, not particularly overwhelming. Since it isn't something I can do only by myself, it looks like the idea will pass away quietly. Paul From: [log in to unmask] (Joan Hartman) As I posted earlier................I, too, stumbled on the List...........and all of a sudden there were 1,800+ people out there just like me with PD ....it helped me overcome that feeling of being all alone with PD... We need to spread the word that there is a viable SUPPORT GROUP out there in cyberland and it's a 24 hour 7 days a week group that we have....we don't have to leave home, we can be in our night clothes, etc....and when we feel we need the support, we're only so many feet from our computer and the LIST......also, when I was looking for info I bounced all around the place looking...and, now, thanks to list member Phil Tompkin all that info has been put together in his Index........we have people retired with various backgrounds or currently working as doctors, pharmacist, nutrition expert, psychologists, research chemist, etc., we've got alot going on here, folks, it's all here.......let's share with those in need who don't know about us.......Joan Hartman From: [log in to unmask] (Cathy Morse) I have to agree with Carol, I found this LIST by accident also. Best accident I've had in a while. These doctors should have, at the very least, a source list of addresses (both snail and e-mail), phone numbers, etc. that he/she can give to newly diagnosed patients as a starting point for information. AND PIENET SHOULD have a prominent place on that reference list. maybe a general source list for pwp's is the approach to take. any thoughts? Apart from hard core information, this list provides a support that is invaluable from a whole person perspective For people like me whose mobility is limited, it is a god-send. (include SPARKLE in that too!) I don't know how many times in the last few months when just reading some of the postings has given me a smile or warmed my heart or made me think beyond my little world to share in the world of others. I want to share this list with as many in need as i can reach. Even with the petty bickering that goes on at times.. Let's face it, a fair number of us are diagnosed by a general neuro. Parkinson's is only one of many diseases they deal with. Actually same can be said of a movement disorder specialist. Personally, I don't take anything I read from any source as written in stone. (I constantly engage my own filters, for better or worse )And I would be a little suspicious of any doctor who wasn't open to a source like this one. But as "they" say, "to each his own. It never hurts to ask. Fondly, Cathy (50, 48,,46) From: [log in to unmask] (Bill and Lenore Olson) Hi Paul:. . . Did you take a look at our support group's web page. If you have an interest, please take a look at the inspirational page. These people list anyone who reciprocates. (without endorsing them.) I suspect there may be lots of web sites out there who would be willing to list a non-profit organization. I hope that I am not biting off more than I can chew, but would like to assist your idea along. Our web site has the following URL <http://www.cjnetworks.com/~nekpa> Cari daughter of Dempsey-PWP (71/16+) & Jo Ann-CGiver