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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Would it work to send a private message to a person that you feel you may be butting heads with? Might that be a solution for some? It does seem that there's been a bit of "forum policing" and that really ought to be the role of the moderator or someone official from LBDA, not from the members. (at least that's my humble opinion) I think other members perhaps get a little resentful when that happens. Lynn

Sun Feb 14, 2010 12:13 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
I encourage everyone to let this issue go, we are all here for infomation, support and comfort because we have or had a loved one with LBD, this is the reason we are here so lets just move on please.
Tomorrow is a new day!

Irene Selak

Sun Feb 14, 2010 12:58 am
Profile WWW

Joined: Wed Aug 06, 2008 2:24 pm
Posts: 40
Post A reminder of LBDA Forum Guidelines
Dear Forum Members,

The LBDA Discussion Forums were established to create a place for the LBD community to gather and share their personal experiences and information relevant to Lewy body dementia. And we are glad that you have all come to this forum, as nobody should have to face LBD alone!

Having said that, all communities, whether physical or virtual, need guidelines or rules, and it seems this is a good time to remind everyone of one of them.

While we encourage forum members to provide each other with emotional support, the forum has been organized to be topic-based and we ask that all posts remain relevant to the topic where they are posted. In order to keep our forums easy for users to find the information they need most, the moderator from time to time may request that certain discussions be taken offline. The moderator may also move threads to different topical areas so that the content is organized efficiently.

Your help in ensuring our community remains a welcoming place for all LBD caregivers is greatly appreciated. To that end, I’d like to highlight one section of our forum guidelines. The following excerpt comes from our forum guidelines posted at

Derogatory messages
Derogatory messages will not be tolerated. Derogatory messages include, but are not limited to, the following:

Name calling
Swear words
Personal insinuations/attacks about other online community members
Complaints about other online community members
Sexually inappropriate comments
Disrespecting the wishes of others

If members are engaging in any of these behaviors, their posts will be deleted. If the behavior continues, the individual may be banned from the community. Decisions around the deletion of posts and removal from the community are at the discretion of the site administrators.

As this thread has veered off topic and some of the posts violate our guidelines, I am locking this thread and deleting select messages.
Thank you for your understanding. Please feel free to email me directly at ataylor with any questions or concerns you may have.


Angela Taylor
Director of Programs
Lewy Body Dementia Association

Sun Feb 14, 2010 5:50 pm
Profile WWW

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post to Martha
Martha, I had to laugh - I hope you are around to read this - I too want to have an autopsy on my husband if only to prove I was right.... I am sure you have heard of a headstone that says "I TOLD YOU I WAS SICK". I actually saw one that said that,,,, So I am going to have my own headstone say 'I TOLD YOU HE WAS SICK!!!"

About Lewy Body diagnosis. My husband had a pet scan recently because I told the psychiatrist I just wanted something that would PROVE he has LBD or something... The results did show significant evidence of LBD (in very scientific terms of course)... BUT, the amazing thing is that after death it might not show up as LBD.... go figure.... but for now the list of drugs used are pretty much the same across the dementia board with the docs adjusting which ones for which patients.... i think they guess as best they can... These gals that post on this website have lots of information and history and know a heck of a lot more than I do - we have all sort of been through hell with it so you just hang in there and maybe just read the posts if you want to for awhile....

Tue Feb 16, 2010 12:43 am

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post chat
Lynn, how did you go into a "chat" room successfully? I tried it and was denied access and now can't remember where I went to find the chat room... :oops: thanks, Cheryl

Tue Feb 16, 2010 1:00 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Cheryl -
Go to and you'll find instructions for the chat room there.

Tue Feb 16, 2010 1:31 am

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Robin, just realized you sent the info about the chat room.... I will try it but last time I was blocked BUT before completely making a fool of myself by further explaining my inability to access it, I will try again and even if I can't access it will say I was a raging success!

Tue Feb 16, 2010 1:40 am

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Robin, I am not quite sure which thread is supposed to be locked but will figure it out and go to the other one.... I do have a mac so will work through it - thanks so much for your help. Cheryl

Tue Feb 16, 2010 2:24 am
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