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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 ----- Original Message ----- From: Cathy Morse <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, December 16, 1999 10:11 PM Subject: Re: Just an idea and one person's opinion > 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) > > > > Michel Margosis wrote: > > > 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? > > > > 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' >