kathywebster 34 posts 11-May-05 3:12 PM	We, as members of the board of directors of the Young Onset Parkinson's Association,have discussed previous examples of reasons why we would ban someone joinging the chat room, or posting of messages. A person who degrades fellow PLWP's, or chooses to degrade YOPA itself, may not be allowed to be in our chat room or post messages. Call it what you may, but it seems very odd to me that the people causing the problems always seem to be the ones causing problems on other sites as well. This is the policy that the board has agreed upon. No exceptions. If you want to bath the organization, or other PLWP's, then I suggest you go to another site. As far unity, i think our "regulars" all reached out to help. And help is hard to provideif the person is not known. I think YOPA members do show unity through their caring replies to a PLWP's cry for help!
janjanhiggs 13 posts 11-May-05 4:25 PM	Who was banned? I am fairly new here and I have to say that I have really been put off by all the bickering. It seems to me that this is an open forum and people should be allowed to express their feeling. We are all in a different place right now. Anyway, that is my two cents. I feel bad that a plwp would be banned. Was the offense really that bad? I read alot of the posts, although it looks alot of what some people said has been deleted, and while some of it was taken way too personally, I found myself agreeing with alot of what was being said by the person who seems to have been deleted. Hopefully we can get pass this. I like the look & feel of this message board but I have to say the negativity the last few days has really gotten me down. Thanks for listening! ---------- Janice Diagnosed November 2004 at age 35 Married to husband Paul 10 yrs Son, Brian 9 years
pdmike2 18 posts 11-May-05 4:47 PM	my sincere apologies to all if i was one who was contributing to the negativity as that was not my intention. michael
gbirdboy 8 posts 12-May-05 3:23 AM	I may have missed some of the key posts that were at the center of the controversy, and i did read some of the exchanges, and other posts as well. We wonder sometimes where all of a sudden these negative flare-ups come from. Lets face it the phsycological, emotional, and physical toll that PD has on us all is a factor. We feel strongly about so many things as we struggle day to day, between the good-days and bad-days (often more bad than good). I neither condone nor condem Jim's behavior, or the boards actions at this moment. Only to say that i hope the board reviews the incident after a short grace period, and consider reinstatement at an appropriate time. I dont know anyone whose been around for more 2-3 years, who doesnt know and respect James McCumber and appreciate all of his hard work. We wont sacrifice our old friends for new ones. If our legacy has bagage we carry it. ps. We dont need to confuse the issue (Tom) with state-of- the-union editorials and advertisement. Just say: "Free Huey, Dewey, and Louie and leave it at that! To the board; "Getter-Done". To the rest; No loitering "Move-on. Gary Boyd
pdmike2 19 posts 12-May-05 4:42 AM	Marcie, i am not sure that i am a "regular" but i know i am not immune from anything. for the sake of clarity i removed my own posts after some of you expressed the fact that they were negative personal attacks--the board did not move to censor them. as to why james was banned and not me i do not know for the sake of peace in the "family" i am voluuntarily banning myself from this message board i sincerely apologized and i sincerely hope that this action resolves the issue for all concerned Michael
LoraR 12 posts 12-May-05 10:35 AM	Michael, I hope that you reconsider. I am fairly new here, and just lurk most of the time, but I have enjoyed your posts and I think that everyone here is valuable. We are all in this together. Lora
trevor-1 15 posts 15-May-05 1:56 AM	Tom: there are a few issues you left out. First of all there is no mention of Gina Reilly - president of YOPA - perhaps the hardest worker and most committed to the young onset community. She is a true beacon of light. Also, I would have to challenge your statement and say that YOPA has GAINED alot of respect over the last year or so; not lost. At least that is the feedback we are getting. In regards to the other organizations, I can speak from personal experience. Having been a founding member of YOPN and workng under the direction of the fabulous Heidi Slewett and Adolfo Diaz - two people I still consider friends, I remember no slandering of the other organizations or the people representing them. YOPA and PAL are working together to put on a symposium in New Orleans in October. This is only possible due to friendships made between the 2 organizations. I would call this Unity. Do you realize that one of the organizations and leaders that you are commending banned every board member of YOPA from his site simply because they belonged to YOPA? All I hear is "unity" yet all I see is criticism. You did not mention one member of the present YOPA board of directors and yet you decided to post it on YOPA's message board. I'm sorry Tom - but I have to question your motives. YOPA has great and wonderful things planned for the upcomng year. Please have faith in our abilities. Your friend, Trevor Jonasson
gbirdboy 10 posts 15-May-05 4:07 AM	Again!! This does'nt help Jim or the board resolve this particular banning issue. In fact it probably exacerbates the situation. We'll give you the benefit-of-doubt, knowing that your intentions are "perhaps" good. And i say "perhaps" good in the same way that someone might say: "Perhaps Rick Stake is the kindest man they've ever met." And that your ambiguitous and somewhat skewed recallections give creedence to the belief that a Parkies short-term memory is for Sh@t. Lets, for the time being just work on getting Jim back on the same page, so to speak. Gary Last Edited: by gbirdboy on 2005-05-17 12:25:40.463
nola 1 post 16-May-05 11:02 AM	Tom, I appreciate the compliments but wanted to set the record straight on a few comments you made. 1. Yes I started PAL and have raised a lot of money for PAL not NPF! The year before I started PAL in 2002 I held my first fundraiser which I did for APDA, which resulted in the largest most profitable 1st year walk for Parkinson's in the USA. Unfortunately, after sending just over 39,000.00 to this National Organization they felt the need to send us a form letter thank you and we here in Louisiana never made the quarterly FYI glossy magazine which included other states being honored for raising as little as two to seven thousand dollars for APDA. In July 2003 myself and Chuck started PAL. 2. Secondly, PAL's financial gain does not go to NPF, APDA! Our 501c3 is a independent organization and we are not tied to any let me repeat ANY National Organization. Not to say we haven't been approached numerous times by these and other organizations. This way we see fit to keep our funding here in house and distribute as we see fit. I think we have done a hell of a job in two years for PAL in fundraising and in March 2005 rewarded our first research grant to LSU in Shreveport, LA. Also, this goes without saying that the UNITY between YOPA and PAL will be shown here in New Orleans in October. Even though you truly believe that having a symposium in New Orleans that everyone would be intoxicated and not attend the conference. 3. You met me at the 1st YOPA Conference, not the 2nd as Marcie and I were the two people who coordinated the 2nd conference in Albuquerque from Seattle and New Orleans and if I remember correctly, that year YOPA came out making a large profit due to our dedication to this organization. It was the first time YOPA could say they had money in the bank to help people. Then Gina Reilly followed up and funded YOPA even more with that magnificient gala she held in New Jersey and had donations that paid the way for so many of us parkies to attend. 4. As far as the pictures go which I must say were quite interesting pictures (woo-hoo), you can continue to believe what you would like and blame me for the call to APDA but me including a few others know who really made the call and it wasn't me. I had no reason to do this to you and can not believe you would even think I would. 5. Tom, as I told you last time I saw you in Albuquerque. You lit the fire in me and gave me inspiration as you have for so many others and I thank you for that. But molded........ ughhhh I can't agree sorry! You have to get over your feelings from the past and move on so that you can continue to help those in need and work together to beat this crap just as we all are trying to do. 6. I'm not sure what Jim posted and would like to read it as Jim is a dear friend to me as he was the first other young pd'ers that I met along with you & Marcie. But I can also say I miss him not being with YOPA it would be great to get to spend time with him here in New Orleans for the conference along with my new friends Gina, Trevor, Kathy, Tom, and Leanne. Hope this doesn't set off a whole new topic of irriate postings but thought it would be correct to state the facts especially on the issues of PAL. Looking forward to seeing everyone in New Orleans Sept 30 - Oct 2, 2005 Michelle Lane
kathywebster 36 posts 16-May-05 5:36 PM	"Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you too can become great. " ---Mark Twain
aussiebron1 1 post 16-May-05 5:56 PM	For Heaven's sake, get your acts together.... As an aussie, I hang from the ceiling down under by my toenails and watch the ebb and flow of information and thoughts (feelings) that flow across the forum boards at various PD sites I visit. But all this drivel re “unityâ€쳌 and “sorryâ€쳌? I ask myself, is this simply graffiti or self-destruction on a grand scale? Is this the image the forum boards wish to portray? This “he said – she saidâ€쳌, malicious character assassination and self-justification must stop. In your effort to be “rightâ€쳌 have any of you stopped to think what this all looks like from the outside? Put yourself in the place of a person tentatively seeking help for PD. These people do not care what the initials (for all those organisations) stand for nor how good you were/are at raising money! They want your help, encouragement and advice. I can assure you that, from the outside, the site is not looking good. It is in danger of going under, internally self-destructing, yet I know it contains many fine people who have worked long and hard to create it. Please do not spoil your own handiwork and go back to using the forum appropriately. Bron from Oz
pdmomof3 13 posts 16-May-05 8:00 PM	Always do right. This will gratify some people and astonish the rest. Mark Twain ---------- Marcie Gruenewald dx'd 11/2/01 at age 37
judi vander hoek 8 posts 16-May-05 9:31 PM	This is nothing new..in between the positive support-related messages... there has been bickering and bantering going on for a long time with just a change in subject matter. I too wonder-why this recurs. One person's facts and perceptions seem convoluted and skewed to other people. When I read these things, I figure that when someone posts something, they know what kind of reaction theyre gonna get whether they preface it by indicating that they mean no harm or add that they consider you a good friend. I also wonder why people dont use the e-mail forum, instead of the message board to let someone know how wrong they are or to bust their chops for something they did or said. Maybe that could be handled in private, not in public? Sometimes I feel embarrassed for the person being chewed up, live on the bulletin board. Judi
trevor-1 16 posts 16-May-05 10:36 PM	Within this thread, people have spoken up to state their opinions. From the U.S. , Canada, and Australia; North, South, East coast and West; male and female of all ages. People....this is UNITY. Can we take something positive away from this; learn; and move on. Lets hope so. Trev
nola 2 posts 17-May-05 1:30 AM	"Hain't we got all the fools in town on our side? And ain't that a big enough majority in any town?" Mark Twain HA! Michelle
David 13 posts 17-May-05 4:15 AM	Does anyone remember how this all got started? I think since so much as been deleted lately that this whole thread should be deleted and a new topic get started. Any suggestions for a new more upbeat topic? I come here daily and need a friendly "fix". David
slenderymaryal 55 posts 17-May-05 4:40 AM	David, I agree. I had hoped we had moved on. I saw an interesting idea posted in the guest book. The suggestion was made that we have a page for family, especially children and teens. I think that is a terrific idea. Does anyone else have thoughts about this and ways that we can give forum to those who are closest to us, to share and voice their concerns? ---------- Mary Alice
gbirdboy 11 posts 17-May-05 1:46 PM	I remember how it got started. A little venting can be a good thing but when they get off-track and start clouding the subject or issue with soap-box diatribes and agendas, the wheels are bound to come off and all heck breaks loose. I try not to convolute the subject matter too much. I dont like to see the deck get shuffled i.e. deletions and edits So... Mean what you say but mind what say and think of others. Attitude is what you are, and what you say. Have a good one, Gary ps I'm off to the library to check-out a book on Samuel Clemens. I hate being out of context!