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As newly diagnosed with PD, I have found this group to be a good source of information. I scan thru the posts, deleting those I'm not interested in, and learning from those I take time to read. I do believe the posts should adhere to postings applicable to all and not merely personal posts meant primarily for one person and yet sent out to all. When that happens, our computers are flooded with extra personal e-mails we have to spend time deleting, which can become tedious and discourage us from bothering with any of it, or causing us to accidentally delete the informative posts we became a part of the group for. My input is to keep personal posts personal and continue with the postings of information applicable to all - even the controversial ones. Ron -----Original Message----- From: Marla Gillham [mailto:[log in to unmask]] Sent: Sunday, July 08, 2001 10:15 PM To: [log in to unmask] Subject: Change is not only inevitable, it's GOOD for you, me, us Jo Ann... and all "Others" with the same attitude: This email doesn't mince words. I'm laying it all out here, and the reason is: This list needs to think seriously about whether it really DOES serve the Parkinson's community. It seems to me that it does not, although I hope it WILL. Before you begin, my words in caps below are not "yelling", they are merely emphasis. I am a lively, passionate woman, and I have only caps to highlight the important concerns I feel about this subject. If you interpret it as "yelling", you're absolutely wrong. First and foremost: the name of this list is the PARKINSON'S INFORMATION EXCHANGE NETWORK. At present, this is only partly true... it is also quite clearly the personal chat room of, I suspect, a rather small proportion of the total list. I think all those with "Jo Ann's" attitude believe you have some sort of "right" to trash others who are GENUINELY [and repeatedly] pointing out a PROBLEM! It seems that those who like it the way it is fail to realize something: This list reaches many many PWP. Clearly it is recognized as an excellent source of info, or people [like myself] would not be drawn to it. While the original intent of the listowner may be other than that being requested by MANY over time [including myself], it may be that, IF the intent of the list is to SERVE the PWP community as an INFORMATION EXCHANGE NETWORK, a re-evaluation of intent may be in order. Change is natural and inevitable. Without change EVERY system becomes ingrown, stagnant, decadent... as increasingly the few "exclude" via their forceful voice and the excluded leave for the clear, sweet air of open-minded and creative discourse. I have read enough vituperative slams to see WHY [apparently] quite a few, very knowledgeable FORMER posters to this list have left. To some, their absence is keenly felt. I have been told that many who had MUCH INFORMATION TO EXCHANGE left out of frustration with the "chatters". I fail to comprehend why it is so inconvenient, to those who use the list like a chat room, to reply ONLY to the person who asked for answers. A few days ago I sent a message describing basic e-etiquette. Why is it to much to ask this of "you"? Why do "you" insist on staying fixed in the past? Haven't you learned yet from PD to JUDGE NOT lighten up ACCEPT CHANGE GRACEFULLY acknowledge that united we stand, divided we fall LIVE IN THE NOW etc. etc. etc. So here's the gig: Slam the hell out of me because I have the COURAGE to call "you" on this most unfriendly and exclusive attitude and behavior and I will sign off so fast it'll make your head spin! I KNOW I've contributed useful info to this list, far less than I would have if I hadn't been wasting so much time with the delete key... Are you sure that I don't have some REALLY good info to share? I'm actually investigating something right now that I think has great promise. Frankly, I'm reluctant to "share" with the entire list because of what I'm willing to bet are a few, loud, unfriendly, nay... NASTY voices! "You" don't want to change, or even be respectful? Well what kind of role models are "you" for those who come after us? OR "diplomats" for PWP? Quite simply, when you hear a request over and over and over and you deliberately ignore it rather than trying to find creative solutions you have demonstrated something ALL OF US EXPERIENCE EVERY DAY AND I WOULD WAGER FIND ABHORRENT, namely Narrow-mindedness and prejudice. So, how about putting down the gloves and trying to find solutions? I would rather "stay" but I will CERTAINLY leave if there aren't some serious, constructive replies to this posting, NOT DIRECTED AT ME BUT RATHER TO THE ENTIRE LIST! DO WE GROW TOGETHER AND FIND HEALING, AND ACKNOWLEDGE THE VALUE AND NECESSITY OF CHANGE? OR DO WE DO WHAT NON-PD PEOPLE DO TO US: POINT FINGERS AND STARE AT THE "BAD" PERSON WHO MUST BE ON DRUGS? Think carefully, those of you who want to slam me and others, lately Katie who was VERY diplomatic in her message. Open your minds, open your hearts, open your SPIRITS, and look for SOLUTIONS that will keep us together and GROWING STRONGER!!! Think carefully before you slam me for my position. I AM ONE OF YOU more than not. Would it make a difference to you if I shared my own, particularly devastating tale? Would you feel I was more "like you"? Would it help if we ate hotdogs and potato salad together at a 4th of July picnic for PWP? Maybe, but you're just going to have to trust me on this one... I AM ONE OF YOU AND MY VOICE COUNTS AND DESERVES RESPECT. My Heart is already heavy with the weight of living with PD.... How I LONG for a TRUE SUPPORT GROUP! One which listens to each and all... and is INCLUSIVE! The sniping has to stop. Don't you see what you're doing by refusing over and over to consider the same plea? If the plea were coming from your partner/spouse you'd have been divorced a long time ago! IS this list an "exclusive" club, or is it an "inclusive" list "serving the Parkinson's community".... as a TRUE Information Exchange Network? Marla L. Gillham PO Box 343 Yachats, OR 97498-0343 541.547.4090 [log in to unmask] ----- Original Message ----- From: Jo Ann Coen <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, July 07, 2001 4:47 PM > Katie - I think the policing of this list belongs to the list owners and > not someone who MIGHT be offended . Jo Ann > > ---------------------------------------------------------------------- > 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