The comments to which this post refers were posted under the FTD Stages topic. Since that discussion is about FTD, I wanted to keep it as such, and not get off topic with the other comments.
Everyone was commenting about sharing information, and the disappearing comments. They did not disappear. I deleted them, but since everyone kept re-posting them, I have decided it is time to post an explanation:
I was really trying stay out of this and keep the situation private. For more than a month, I chose to take the high road and not comment, but everyone keeps bringing it up, and will not let it go, so I will explain.
I am, at heart, an educator, and I believe in building webs and networks to share education. The administrators of the Alzheimer’s Association Message Boards do not agree with me.
Per directive of the Administrators of the Alzheimer Association Message Boards, neither I nor anyone from this site or anywhere else, is allowed to mention this site, its address, or give any links to information from this site if you go onto the Alzheimer Association Message Boards. According to their directive to me, they are concerned about "driving traffic to the Alzheimer Spouse website." They have removed all links and information that were offered on their message boards from this website. I also am fully aware of the situation behind the scenes that precipitated it, but I prefer not to comment on that either.
In order to legally protect my copyright, no information from this website, including all blogs or informative links can be shared anywhere, including the Alzheimer’s Association Message Boards, WITHOUT citing the reference as www.thealzheimerspouse.com. That is standard legal practice pertaining to anyone’s “intellectual property”, which is the classification for the website and my writing. I have shared many links to blogs and information on my message boards that I felt were informative and educational,with hundreds of other websites, publications, and forums, as well as shared links with you from those other places. The information and links I shared on the Alzheimer Association Message Boards from this website have all been removed with a stern warning to me to KEEP OUT. Any information you receive contrary to this is simply not true. I have the documentation to prove it.
As an educator, I find their position abhorrent, but that is their position, and they are entitled to it. Anyone can use any resource they wish for information, but to protect my copyright, I have to ask that any information you share from this website is cited as taken from www.thealzheimerspouse.com. It will, however, be removed from the Alz. Assoc. message boards by their administrators. Other sites, publications, and professionals with whom I have shared information have sent e-mails thanking me.
Thank you, Joan. I certainly don't understand their position when everyone needs all the information they can garner while traveling this awful road. Thank God for this place, however. Don't know what I'd do without it.
Joan, it's an unfortunate situation, but I commend you for taking the high road, regardless of whatever road others take, and letting us post links to other information that might be helpful. Thank you.
Absurd! And amen to what you just said, Vickie. I would be lost. I was on the Alz Assoc. message boards before coming here and, no offense to them, but this has been so much more helpful. Thanks, Joan.
One would think they would want people to get all the help they can regardless of where that comes from. They evidently think they are the only true source of info and help for people and I feel sorry for those who think such a thing. I haven't gone there since except mostly for some info, but I always come back here for the family and support atmosphere. Sorry Joan for the added stress this puts on you.
Their attitude reminds me of a doctor who is upset and/or forbids you to go for a second opinion.
To clarify - The adminstrators of the Alz. Assoc. Message Boards are NOT against sharing information from other avenues or sites, just this one. I did not mean to imply that they feel they are the only appropriate source of information. Not at all. They allow links, articles, and information from many sources. It is that they do want this site referenced or mentioned by me or any of my "associates". They do not wish to be a part of, as I mentioned, "driving traffic to this site", nor do they approve of the advertisements on my home page.
Joan, Just to let you know,I found your website all on my own,not on any link from the Alz Boards. Your site is by far the homeist ( is that a word) and informative, supportive and in many ways, fun of the ones I have ventured into looking at. You are doing a good thing here with this site and we all appreciate you and it and it is a good time for all of us to put our paws together and clap out loud and stand up while doing so!
Hip Hip Hooray for Joan and all she does for so many! ; )
Perhaps when there is something we think should be shared--like memory walk info or candlight vigils,we can just reference the Place That Shall Be Nameless.
What a totally bizarre claim. I'm sure you misunderstood, Joan.
The last time I looked (five minutes ago) I found:
310 hits for www.thealzheimerspouse.com (The most recent was March 29, 2010.)
218 hits for http://www.thealzheimerspouse.com (The most recent was March 17, 2010.)
That's 528 links to The Alzheimer Spouse on the Alzheimer's Association discussion forums ... and that does *not* include links to specific threads or blogs or articles on this site.
I know for a fact that Alz Assoc members are allowed to post links to this site, because I've done it myself, many times.
In fact, there are at least three dozen of you who belong to The Alzheimer Spouse because I posted a link to this site for you on the Alzheimer's Association discussion forums ... and those are just the ones I know for sure who joined here.
But, carosi, would that be an honorable thing to do? I am very upset by all of this. We are all hurting and vulnerable. I will accept help and good advice from any source I feel is solid and well grounded.
April fool Joan...I finally managed to finish my research on Hipaa Law violations, and since no one on here has posted their poa and consent to release information, I am busy printing 3,243,896,242 citations to anyone who posted. I have launched a low class action suit for all the Alzheimer patients and FTD patients, and will be initiating the suit against all the spouses. Additionally, some patients could not remember if their spouses posted, so we will include them in this massive suit. Additionally, since most spouses have spent great sums of money , including near bankruptcy, we will attempt to recover that money from the patients, and force others into bankruptcy. As part of the new health care reform, it will soon be illegal to talk about alz with other caregivers.
I reallly do not understand what you are trying to say about the alz organization.... I thought all they were good for was to solicit donations....not to make life more difficult for the caregivers.... SUNDAY,MONDAY, TUESDAY, even the calendar says WTF
Joan. I really do not understand this situation...Is this part of the Medical reform?? I am sure it must have been included in the Medical Reform Bill....snuck it in there somewhere.
It's been a long time since I read or posted any comments on Alz. Assoc. message boards. THIS site, Joan ... YOUR site ... is far and away the most helpful site available to AD spouses. Whereas I may not post comments on your various message boards each day, I cannot think of a day when I haven't checked your site to read your articles, various board postings, etc. How you manage to keep this site so informative ... and easy to access ... just amazes me. Keep it up!!
Joan- Your site is not intended to provide information about Alzheimers- I feel it is a reference and a support for the alz caregivers... I am over educated with Alzheimer's, but seriously stupid about coping, caring, and learning how to apply makeup. SO,keep doing what you are doing... I need caregiving support, not alz descriptions and research and funding requests.....THANK YOU FOR YOUR GREAT SITE....
We ARE Family, just as Mary said. Where else can you go and cry, sputter, scream, laugh, cry, tell stupid jokes, share the intimate details of a bizarre life and NOT BE JUDGED???
I also found this site thru the Alz assn website. Maybe it was sunshyne who told me about it, I don't remember, but I do know that I have mentioned it to others who are in our situation on that site. I don't understand what you're saying Joan. However, I do know that the alz org site now has an entire area devoted to spouses, so i guess they learned from you. Imitation is the sincerest form of flattery.
This is exactly why I have kept the situation quiet - it is a total distraction from the purpose of this website, which is to address the "unique issues" and provide support and information to spouses of Alzheimer patients. I received a letter from the Message Board Administrators of the Alzheimer's Association online forum, stating exactly what I said in the beginning of this post - that they are "weary" of hearing about The Alzheimer Spouse Website, and that I and any of my "associates" are NOT to post any links to this website, as it appears its purpose is only to "drive traffic" to this site. They informed me that they removed the links that I and "my associates" posted. The letter was dated March 15th. I do not have the time that Sunshyne has to go through every post on that site and see what has been removed and what has not been removed.
As far as I am concerned, the matter is closed, and I will return to my original position, which was not to comment on it. I need to get back to my work, which is to write blogs to which we can all relate, and to find resources of information for everyone.
Anyone and everyone should take advantage of every avenue of information, no matter where it comes from. I absolutely do not want this forum to be used to argue back and forth the veracity of this claim or that claim about who did what. I am closing this subject, so we can get back to our important business, which is to discuss our spousal issues.
SS, I have found both this site and the AA forums to be helpful and a good source of support. I hate to see a "rift" and people talking about boycotting one site or the other. Can you offer any clarification here? Thanks.