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Goodbye
JAB
Posted: Friday, February 17, 2012 6:44 PM
Joined: 11/30/2011
Posts: 740


Dear friends:

 

It is time for me to say goodbye.

 

 

As many of you know, my purpose for belonging to these message boards is to try to help our members by tracking down information that you need, whether it's about healthcare, legal, or financial issues.  I post links to the best sites I find, so you'll know the information I find for you is reliable, and so you can get additional details if you're interested.

 

 

For as long as I've been a member of the Alz Assoc boards -- in fact, since long before I joined in 2007 -- board policy has stipulated that we could not post links to sites that offer products or services for sale when such sales would personally profit the person who posted the links.  This was a very simple and sound policy, easily interpreted, and intended to protect members against spammers.

 

 

Those of you who have been around a while may remember that, in late 2010, Admin abruptly changed board policy, without warning, without notifying us of the change, and even without posting the new policy anywhere for us to read.  The revised policy -- as explained to me when I emailed Admin trying to understand it -- forbade links to any "commercial" website.  The definition of "commercial" included websites operated by companies that sell products and/or services, whether or not anything was sold at the site in question.  The definition even included sites run by entities that do not offer anything for sale, ever -- that do not charge anything at all for the information and resources they provide -- but which have pay-per-click advertising to help defray their costs. 

  

 

I first discovered the revised policy when, out of the clear blue, Admin reprimanded me for posting links that I'd posted many times in the past -- and for which many of our members had thanked me.  They began censoring my more recent posts, deleting the links.  The same thing happened to a number of other members.  Even younghope1 was reprimanded for posting the link to her camp for young children of Alzheimer's patients -- a camp, and a website, that are supported by her local chapter of the Alzheimer's Association.  When we protested, Admin censored our protests.  The slightest reference to the change in policy -- or even to Admin -- was ruthlessly quashed.  

 

 

There was a huge furor over the change in policy, the way Admin had handled it, and the way Admin censored any and all references to it, that resulted in many of our best members leaving the boards.  

 

 

Eventually, Admin reversed their decision to revise the policy ... and went back to the original, tried-and-true rule for unacceptable links:  "No hyperlinks promoting a member's own products or service for which a fee is charged will be permitted within the community."

 

 

I went back to posting links from my voluminous files of helpful websites.  Those websites are selected on the basis of the quality and the quantity of the information available at the sites.  Admin made no further objections to any links that I posted ... for months and months and months.

 

 

This brings us to Feb 06, 2012.  

 

 

Admin has, once again, revised their policy about links, without warning, notification, justification, or, to my knowledge, encoding it in written form.  Per their emails to me, they have just now decided that posting links to websites with pay-per-click ads violates the "Terms & Conditions" for use of this site that members agree to as part of the registration process.  The  Terms & Conditions for use of AlzCon are the same as the Terms & Conditions of use for the old site.  They haven't changed a bit.

 

 

Admin has, once again, reprimanded me for posting links that have been allowed since I joined the boards in 2007, with the exception of the brief period covered by the earlier change in policy.

 

 

This time, their reason is:  "After reviewing our Terms & Conditions and discussing this issue with the ALZConnected Admin Team ... we have decided ... we are simply uncomfortable with these types of affiliate marketing websites."   Not only that, but they admit that I, personally, have not been posting links to any objectionable sites ... no, they "worry about others whose intentions aren't so good who may be using the community to link to these types of websites."

 

 

Many of us have been having problems posting on AlzCon for nine days now, because the site is suddenly incompatible with Firefox, one of the most popular browsers in existence.  And how has Admin been using their time during that period?  Trying to fix problems?  No -- they've been plowing through the nearly 900 posts I've put up on AlzCon so far, to locate any offending links and censor my posts.  At least 60 have been edited so far, some butchered to the point it's impossible to figure out why I posted in the first place.  At least four other posts of mine have been deleted in their entirety.  All of that time and effort that I spent, trying to help other caregivers -- while also caring for my stage 6e husband -- wiped out.

 

 

Warning me to stop posting specific links in the future is one thing.  Destroying what I've been doing for months without warning is something else entirely, especially when they admit this interpretation of the T&Cs is something new that we'd have no way of knowing they'd dreamed up.

 

 

There were those who "speculated" that I might have "misrepresented" the situation the last time Admin changed policy.  The email correspondence with Admin is in the attachment, in its entirety, unaltered and verbatim, so you can see for yourselves what was said.  (Oh, geez ... there's some sort of glitch that won't allow uploading attachments.  The email correspondence is in the following post.)

 

 

And in case you wonder what "member survey" they're talking about, see:  

http://www.alzconnected.org/discussion.aspx?g=posts&t=2147485433

 

 

Some of you may not know what Admin means when they're talking about "affiliate marketing" and all those technobabble abbreviations.  

 

 

Do you Google?  Every time you search for something that interests you, Google posts clearly-labeled ads on the pages containing links to the sites your search pulls up.  The ads are relevant to your search.  In fact, one or more of them may be exactly what you were searching for.  If you click on an ad that interests you, you are taken to the site you wanted to look at, just as you are taken to any of the other sites your search turns up if you click on links to them.  The only difference is that Google receives a little money -- as little as a few pennies -- if you click on an ad.  The advertiser pays Google because the advertising successfully caught your attention.  It's called "targeted marketing" ... ads are only shown to people who might be interested in them.

 

 

You don't have to click on an ad.  In fact, per the most recent statistics I found, only 2 or 3 people out of 1,000 who visit a site with pay-per-click ads actually click on one.  Fewer and fewer people are clicking on the ads because they're so used to seeing them -- they're everywhere nowadays.

 

 

Do you blog?  Free blog-hosting services typically post pay-per-click ads on the more popular blogs, to help defray their hosting costs.  (If you begin seeing ads on your blog, it's a sign your blog is a "success".)  The ads that are shown are related to the topics the readers were searching for when they found your blog. 

 

 

In short, Admin is trying to save you from ... ads that may help you.  Ads that might be the very information you were seeking.  Ads you're free to ignore if they don't interest you.  And Admin is trying to save you from websites that contain a wealth of information and resources, all totally free.

 

 

Well.  There is no reason for me to be here, if I cannot continue to provide you with the most reliable information that's available.  Many of the very best sites in my files fall under a "commercial" and/or "affiliate marketing" category.  In my experience, clear and concise information on many of the topics that interest you may not be found at any other type of site.  

 

 

And I'd hate to try to guess which of my other links Admin might suddenly decide are objectionable in the future and what other posts of mine they'll wipe out in their efforts to protect you from me.  

 

 

And so, I am saying goodbye ... to AlzCon.  (And Admin!)  I am not, however, saying goodbye to the many dear friends I've met on the boards, or even the newbies who may come here in the future.  I intend to find ways to continue to help caregivers and dementia patients.

 

 

I am currently planning to focus my efforts on my "blog", Alzheimer's Compendium, which comprises articles I write on various topics of interest to dementia patients and their caregivers.  I'd post the link but ... see earlier comments about blog hosting sites.  It should be easy to find by googling, however.

 

 

Several of us are looking for another discussion forum to join.

 

 

And as always, if you have questions or concerns and would like my input ... or you just want to say "hi" ... post a comment at Alzheimer's Compendium or please feel free to email me at AlzCarer at gmail dot com.


JAB
Posted: Friday, February 17, 2012 6:46 PM
Joined: 11/30/2011
Posts: 740


The email correspondence that I couldn't attach ... Forgive the formatting, that's all screwed up again, too:

 

 

Email from Admin@AlzCon to JAB, dated Mon, Feb 6, 2012 at 1:02 PM

Subject: Request for Call

 

 

Hello JAB,

 

 

I am the main product development person at the Alzheimer's Association. I've noticed that you have been and continue to be an active member and leader of our online community. You (and others) have made some valid points and observations about ALZConnected. I'd like to get the chance to speak with you to discuss them along with a couple of other items.

 

 

If you'd be open to doing so would you send a phone number where you can be reached? We can then schedule a time at your convenience for a quick phone conversation. We'd very much appreciate your time.

 

 

Sincerely,

 

Alzheimer's Association

 

 

________________

 

Email from Admin@AlzCon to JAB, dated Wed, Feb 8, 2012 at 6:46 AM

Dear JAB,

 

 

Thanks so much for your participation in ALZConnected and the valuable advice you provide your fellow members. In our email to you yesterday, we expressed our hope to talk with you via phone. Since we have not heard back from you yet, we are contacting you by email regarding both your suggestion to implement a member survey and the content of some of your recent posts.

 

 

Regarding the member survey, our product developers think this is an excellent idea and would like to discuss this with you in more detail. You have been and continue to be an active member and leader of our online community, so we feel you could generate a good deal of interest in this.

 

 

Also, we wanted to address the URLs you recently have been including in your posts that link to boomja.com. Since we’ve discussed this issue before, we hope you understand our continued concern with these URLs. We know that boomja.com is driven by affiliate marketing (lead generation-CPL, CPA, traffic revenue-CPC, CPM, etc.). This conflicts with our guidelines as they pertain to solicitation and commercial ventures, where they state, “You agree not to use ALZConnected to…post…or otherwise make available any unsolicited or unauthorized advertising, promotional materials…or any other form of solicitation.” Therefore, we will need to delete any links to boomja.com, and we’d appreciate it if you could refrain from posting these kinds of links in the future. As an alternative, you could post URLs that take members directly to the articles and websites of interest, which will make the member experience easier as well.

 

 

Please let us know if you have any questions or concerns about this. We’d still love to connect with you via phone to discuss these ideas more in depth. If you are open to this, please send a phone number where you can be reached so we can schedule a time at your convenience. Thank you again for your interest in ALZConnected.

 

 

Sincerely,

ALZConnected Admin Team

Alzheimer’s Association

 

 

_________________

 

Email from JAB to Admin@AlzCon, dated  Wed, Feb 8, 2012 at 11:31 AM

 

 

I am beyond dumbfounded.

 

 

You'll forgive me if I'm not up to speed on technobabble terms such as "affiliate marketing" and all those acronyms in your email.

 

 

But I'll agree that we certainly have "discussed" links to commercial sites and those with pay-per-click advertising before ... in fact, there was a rip-snorting huge fight, board-wide, over Admin banning them, which caused many of our better members to permanently leave the boards.  I myself left for several months until you'd come to your senses.

 

 

When the dust had settled, it was agreed, quite clearly, that the links that are in conflict with discussion forum policy are those that SELL products or services AND from which the POSTER personally profits by those sales.

 

 

IT WAS AGREED THAT SITES WITH PAY-PER-CLICK ADVERTISING WERE OKAY.

 

It was agreed that even links to sites which sell products or services were OK, as long as the person who posted the links did not profit from the sales.

 

 

The members ARE NOT CHARGED ONE SINGLE PENNY to access the information at the boomja site.  No services are sold.  No products are sold.  To my knowledge, nobody makes any money whatsoever unless someone visiting the site finds one of the ads to be USEFUL and clicks on it.  And that still doesn't cost the visitor one red cent.

 

 

I cannot believe you're raising this issue again.  It's getting hard to find a site that doesn't have pay-per-click advertising these days.

 

 

Many of the board members have blogs.  The blogs are free to them ... but the cost of the web hosting is defrayed (at least, in part) by pay-per-click advertising.  Are you going to go back to forbidding members to post links to their blogs if they have pay-per-click advertising? 

 

 

I myself have a "blog" that contains articles I've written on dementia-related topics that I've spent hundreds of hours researching.  Some of those articles have been recommended to their members by other Alzheimer's organizations, such as the Fisher Center.  The website itself is free to me as long as I allow discrete pay-per-click ads to be posted.  Are links to my "blog" banned, too?

 

 

My sole purpose for being a member of your message boards is to help other caregivers and dementia patients find INFORMATION -- medical, financial, legal -- that they cannot find for themselves.  And I back up the information I provide with links to websites that have solid, accurate, and useful data.  That way, members can determine for themselves whether the information I post is sound, and get details about the subjects I've summarized in my posts if they're interested.

 

 

I choose the links I post on the basis of the quality and quantity of the information that is available.  I don't choose them by whether or not there's pay-per-click advertising.

 

 

I keep a list of the sites to which I post links most frequently.  I USED to be able to simply copy-and-paste from that list, and the boards created hyperlinks.  Now I can't do that, thanks to this new site of yours being so incredibly dysfunctional.

 

 

I spent a lot of time converting my extensive list of most-frequently needed sites to hyperlinks that I can paste into this idiot new site of yours.

 

 

And every time I search out new information on a new site for one of the board members, I have to create hyperlinks in a draft gmail and copy that, which is a flaming pain in the keester and takes even more of my time.

 

 

You have lost all of the voluminous information that has been developed by and for board members over the years with the very poor archiving and the total lack of a search engine for it.  My list of useful sites USED to include URLs back to threads on the old Alz Assoc boards that had the best information to be found.  Now that's lost, too, and I've been spending even more time trying to recreate some of my older posts that members have been interested in.

 

 

All of this extra required effort means I have less time to actually HELP THE BOARD MEMBERS.

 

 

As we "discussed" previously, I like the boomja site because I can post a single link to page that has an accumulation of different websites on the subject of interest, rather than having to post a dozen or more different links.  I am not about to waste more of my time converting each of the boomja links in my list into the many links to the individual articles and websites that are at a single boomja page in a format that this idiot new site can accept.

 

 

And I am not about to waste even more of my time looking at every site in my list and my recreated posts to see whether they have pay-per-click advertising and then, if they do, tracking down different sites with the same information (if it can even be found) just because your memory about the previous "discussion" is so poor that you've gotten another bee in your bonnet about pay-per-click ads.

 

 

You are paid for your time on the boards.  I am not.  ON TOP OF THAT, I am trying to care for a husband who has stage 6e Alzheimer's and parkinsonism.  It's becoming increasingly clear that the "Admin Team" doesn't have a clue what it means to be a caregiver.  (And please note that when I say it's clear you don't have a clue what it means to be a caregiver, I am just echoing what many of the board members have said, since you don't seem to be able to understand our frustration with the new site.)

 

 

For the record, the reason I had not yet responded to the previous email -- which purportedly came from a single individual, as opposed to this email, which purportedly comes from the "team" -- is that I was trying to decide how to respond.  I find it rather disconcerting (you can interpret that as meaning "rude", if you'd like) to receive an email from an unidentified person who apparently intends to continue being unidentified, requesting a conversation for unknown reasons about unknown/unspecified topics -- especially when there is some indication that there are "a couple" of intended topics which appear to have nothing to do with that person's stated role at the Association.  And I find it even more disconcerting to be asked to send my reply -- with my personal phone number -- to a generic email address that, as far as I know, dozens of people have access to, some of whom may not even be on the Association staff. 

 

 

Further, ringing phones upset my AD husband ... and his schedule for hallucinating or wandering or needing to use the bathroom or wanting pain meds or food or attention isn't exactly predictable, so it can be difficult to set up appointments.  At the very least, any call would have to be initiated at my end, within a window rather than at a set time, and might have to be cut short and/or rescheduled without warning.  Email correspondence is much preferred, since I can work on that whenever I have a free minute.

 

 

It's just as well that I did not agree to the call before finding out what one of those "couple of" topics was, because if you'd hit me with this pay-per-click crap out of the blue on the phone, the eardrums of the people on the other end might not have survived.

 

 

Let's get one thing clear.  I'd be happy to talk with your team about a survey, by phone if necessary but preferably by email ... provided I'm going to continue to be a member of the discussion forum.

 

 

But if you're going to CHANGE your policy about hyperlinks AGAIN, without warning and without clearly announcing it AGAIN, and without any justification or explanation AGAIN, back to one that forbids links to "commercial" sites or sites that have pay-per-click advertising ... I'm leaving the boards.  For good.  I'm sure I can find something to do with my time that will actually be useful and appreciated.  Heck, I might even find something that will provide some income, to help pay for the ever-growing costs of my husband's care.

 

 

And if you decide once again that the old policy about hyperlinks was perfectly adequate, clear, and well justified ... but there is indeed another "item" above and beyond the survey to be discussed, that needs to be identified beforehand.  I don't much care for being blind-sided. 

 

 

________________

 

Email from Admin@AlzCon to JAB, dated  Thu, Feb 9, 2012 at 9:02 AM

 

Dear JAB,

 

 

Thank you so much for your open and honest reply. We understand that you are frustrated and that this message may not resolve those feelings.  After reviewing our Terms & Conditions and discussing this issue with the ALZConnected Admin Team, we have decided that we are uncomfortable with links to boomja.com. Therefore, we will be removing those links from your postings. We are sorry if you disagree with this decision and we encourage you to contact us via email if you would like to discuss this further. Please understand that we are trying to maintain a safe and supportive community and we are simply uncomfortable with these types of affiliate marketing websites.  

 

 

Because you have been such an active and respected member of the community for so long, we know your intentions are good and that you care only about providing helpful information to fellow community members. However, we worry about others whose intentions aren’t so good who may be using the community to link to these types of websites. Sometimes when working with a large community, we have to make decisions (like this one) that may not seem fair on an individual level, but are necessary on a community level. 

 

 

We also wanted you to know that we are still interested in working with you on a user survey, as previously mentioned. Whether or not you decide to participate in this process, we deeply appreciate you introducing this concept to the community.

 

 

Thank you again for your continued support you provide to our community members.

 

 

Sincerely,

ALZConnected Admin Team

 

 

________________

 

 Email from JAB to Admin@AlzCon, dated  Thu, Feb 9, 2012 at 11:06 AM

 

There is nothing to discuss.

 

 

You implemented this policy once before, and ended up reversing it ... but not before you'd lost literally hundreds of members, and infuriated many local chapters.

 

 

I meant what I said.  I've put in a great deal of time and effort trying to help our members, posting links that have -- aside from that one, brief episode -- ALWAYS been in keeping with forum policy.

 

 

Now you've gone and changed policy again, without warning or notice again, and without any justification.

 

 

And you're going to waste time much better spent trying to fix the @#$%! AlzCon site so it actually works censoring my posts.

 

 

I did a quick look-see to determine how much revenue my posts might have earned for the sites you find so offensive.  I figure boomja made somewhere in the neighborhood of 50¢ since AlzCon started up.  Yeah, that sure is worth you getting upset over.

 

 

I have no intention whatsoever of wasting any more of my time trying to help you.

 

 

 


GardenersDaughter
Posted: Friday, February 17, 2012 6:57 PM
Joined: 1/5/2012
Posts: 4


I am so very sorry you are leaving....and hate the reason for your departure.

 

I have added you blog address to my bookmarks...thank you for providing it to us. Many, many thanks for your past help!!

 


cowboys
Posted: Friday, February 17, 2012 7:09 PM
Joined: 12/10/2011
Posts: 337


What a revolting development!! JAB I will be contacting you and visiting your blog. Thank God you have one. I am sorry this admin is so nuts and this whole thing makes me want to leave also!! I hope that you will let us know on your blog what forum you find because many of us will go there.

God Bless you for all you have done for so many, please know it is so very appreciated. Take Care friend, see you on your blog!


Gidget P
Posted: Friday, February 17, 2012 7:56 PM
Joined: 12/15/2011
Posts: 62


JAB, I could not believe that they did this the first time, and am absolutley floored they have done it again.  I don't blame you one bit for walking away.

 

I only hope some newbie comes along with the background and dedication to researching accurate information that you have.  But wait, they won't be permitted to share what they've found even if they find it. 

 

Thank you JAB for the endless hours you've devoted to this community over the years, researching, reading and translating scientific information into language the rest of us can understand and use.  You have helped many more people than you can possibly imagine - those that post and the lurkers as well.

 

You will be sorely missed.

 

I've been trying to patiently wait out the fising of this fiasco of a message board, depite the increasing frustration level and worsening instead of imporvement in funcitonality. But this is the last straw for me. I've just been pushed off the fence.

 


Teppie
Posted: Friday, February 17, 2012 8:44 PM
Joined: 12/16/2011
Posts: 122


Censorship.

Not for me. 

I will join you, JAB.

Goodbye.

 


Susan M
Posted: Friday, February 17, 2012 8:47 PM
Joined: 12/21/2011
Posts: 5


JAB

 

We didn't always agree, but I always thought your posts were informative and very helpful.  You offered help to all of us, gave us the latest in scientific information and you were there when we needed you. You directed us to new sources for trials, you gave encouragement, and answered our questions in a very timely and exact manner.

 

I understand your frustration, I understand your life with a spouse with AZ, and I wish you could stay.

 

I too find the latest renditions of the Alzconnected message boards less than what they once were, and have decided not to post unless I feel compelled to do so.

 

That being said, I'm glad you've started a blog.  And if you don't mind I will follow you there, and I wish you the very best.

 

 


PatF
Posted: Friday, February 17, 2012 9:04 PM
Joined: 12/15/2011
Posts: 701


JAB:  Thank you for the information and support you have provided to me and to others in need!!!

 

I will continue to post your blog address for people who need help and hope that, when I don't get a chance, someone else here will post it so no one who desperately needs help will lose such an informative, compassionate friend.

 

I send my prayers for you and your husband as you continue you own journey.  Bless you for all you have done for the rest of us!!

 

To the administrators of alzconnected.org:  None of you have provided those of us using your site with the quality of information that JAB has shared with us.  I wish that you would spend your time offering help rather than causing so much distress!! 


EFT
Posted: Friday, February 17, 2012 9:18 PM
Joined: 12/16/2011
Posts: 393


JAB, I am one of the many who were first welcomed to these boards by you, and educated by information you provided. 

What an utter insult to you and, indeed, the rest of us. We all lose.

I will be using your blog as a most valuable resource and will put your email addy in my file - no doubt I will use it.

My very best to you,

Ellen


in the moment
Posted: Friday, February 17, 2012 9:39 PM
Joined: 11/30/2011
Posts: 53


JAB, your valuable posts helped me so much in the early stages of caregiving.  I believe I found this website in late 2006  and did nothing but browse the message boards and read all of the information to educate myself on this disease.

 

Eventually I did setup a log in and started posting.  I always read your posts and it is sad that they will not be available in the future for other 'newbies'.

 

I will follow you on your blog and I am very sorry it has come to this.   


madamme
Posted: Friday, February 17, 2012 9:54 PM
Joined: 12/15/2011
Posts: 149


JAB- 

 

I remember when I came to the boards, frustrated, and hurting you reached out to me with gentle but firm language that reminded me to stop and breathe before going forward.. as time passed on my journey with Mum you were always a touchstone on these boards..I know I thanked you for it when Mum passed..but i want to thank you again..hopefully you will see this..and know how important your "presence" was to me on the path. 

 

It saddens me that it has come to this again for you..I do not post often now..as 

someone whose LO has moved on the boards became a different place for me.. 

 

The changes to the boards have not made them better..have actually to my mind created a static environment..not the warm and nurturing one that it was before.. 

 

I will follow your blog..and I will ask the universe to watch over you and your husband.. 

 

WIth warmest wishes, and many hugs to you.. 

{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}}}}}}}}}}}}}}-M 


*Linda*
Posted: Friday, February 17, 2012 10:21 PM
Joined: 12/14/2011
Posts: 80


I don't know about which I am most saddened:  JAB leaving, Alz.org management's handling of this situation or the poor functionality of this new message board.

 

What I do know for sure is that the Alzheimer's Association will not be receiving any more of my donation dollars.

 

This is a shame.  It really is. 


dutiful deb
Posted: Friday, February 17, 2012 10:24 PM
Joined: 1/1/2012
Posts: 1725


Sorry to see you go, JAB.  I'm finding that caring for a loved one with dementia is frought with legal issues, assisted living arrangements, consulting with medical personnel, financial woes, and so on. It's hard enough dealing with the politics of caregiving in daily life without your having to deal with it in this place you've come to care about and be cared for by so many. I have valued your insight and information; a long time ago I came to these boards as a confused, frightened newcomer and you were one of the first to welcome me. At that time my sign on name was Deb Jo.  After joining, a period of time went by where I didn't sign on...I was in denial about my Mom's condtion and frankly, what I saw that I'd have to go through scared me to death. I did heed the advice, though, and am glad I did. After a while I realized I couldn't do this journey by myself. I remembered how much support I'd gotten in my brief stint on the boards so I came back. I'd just had surgery and was home recuperating; my mom had just been offically diagnosed and I needed support in a bad way, so I came back.   I was dismayed to find the old board closed and was redirected to this one; for some reason or other ended up signing on using a new name and I was welcomed anew.  Over the course of time I have been advised by one of my mom's doctors, one of the nurses, and a social worker to join a support group such as this one, the purpose being a place for me to come with questions, where I could  get information, and receive advice from others who are in the same boat. Thank you for being on board here. I'm sorry to see you go but I understand, too. Many blessings to you.
smiley
Posted: Friday, February 17, 2012 11:26 PM
Joined: 12/25/2011
Posts: 7


JAB, both CAthy and you were a blessing to me.  Your provided me the proper insight, the proper orgranizations to contact.  You provided me with so much information, I don't believe I  would have been provided elsewhere.

 

I will visit your url. ..gladly.  I full agree with what you say.  You are in the right with this. 

 

I am backing you up 100 percent.


imissbrisco
Posted: Saturday, February 18, 2012 1:57 AM
Joined: 1/23/2012
Posts: 155


JAB, I am so saddened that you will not be continuing your great work here. 

 

It was only recently that I began lurking, but yours was one of the voices that kept me coming back and ultimately becoming a member.  I've welcomed other newbies and specifically mentioned you by name as someone whose vast references would be helpful.  It's hard to believe The Powers That Be have decided that depriving us of information is the way to go, since gaining information is our objective in visiting the site.

 

Thank you so much for all you've done, all you've tried to do, and for leaving us with a way to follow you in the future; I just looked at the Alzheimer's Compendium page and added it to my bookmarked favorites.

 

I'm so glad to have crossed your path.


purl
Posted: Saturday, February 18, 2012 3:53 AM
Joined: 12/1/2011
Posts: 73


JAB

I am so sorry that this has happened again.  I can't count the number of times you have helped me on this journey.  You have provided this community with something the administration has never provided... actual help for the issues we face and the questions we have.


I am sad to see you go.  I totally understand your reasons.  You do not need this kind of stress.  Please be kind to yourself and remember to take care of you.  I will definitely look for your blog.

HUGS

Barbara

 


formymotherinlaw
Posted: Saturday, February 18, 2012 5:00 AM
Joined: 2/18/2012
Posts: 1


Alzheimer's dementia

HELP My wife has been telling my motherinlaws doctors for months now that we think ( her mom ) has problems and that we are worried she has Alzheimer's. My wife has also told those doctors the many different problems (AS THEY ARISE) , an time after time they say. O no she is just old. But I, we, did NOT EVEN KNOW untill today at 3am 02/18/2012 of all the different stages or even the ten signs or even what to look for. If we would have put them all together maybe we could have seen them. We trusted the doctor to know what to look for WHAT TO ASK etc. Where do we find a doctor in Metropolis ILLINOIS to check her out to see whats going on. I am somewhat fearful now it seems as if all of a sudden boom she changed. friday 02/17/2012. About 1am Her mom begain to ramble grunt and talk jerberish to not even knowing my name, to then spitting on me as she. She does NOT do this !!!!!! My wife's mom is tough but NEVER does anything bad like this. She is in hospital getting test today. Sometimes not even able to talk right. We have asked many doctors to test her but it is like they think it is just old age period. I am worried that it could be to late to help. Alzheimer's has been found in one of her mom's sister.but the doctor's do nothing and we will be fighting with my wife's mom if she is having a good day and we take her to a different doctor. My wife and I have had some health problems also, BUT I FEEL I HAVE LET EVERYBODY DOWN AND DONOT WANT TO LOOSE HER MOM YET. WHAT DO I DO??????


muncher
Posted: Saturday, February 18, 2012 7:55 AM
Joined: 12/21/2011
Posts: 9


Dear JAB,

 

   This is disgraceful and heartbreaking.    I absolutely cannot believe that the Alz Assn would do this AGAIN - they obviously have learned nothing.    Your contributions are invaluable and they should be THANKING you and PAYING you for the many hours of research, compassion and dedication that you have shared.   Not to mention the specialized scientific & medical research expertise that you can providee to help us weed out the real possible solutions from the nonsense.  

 

  I will certainly access your Alzheimer's Compendium blog and sincerely hope that another Forum can be found to replace this one.    I know that the Alz Assn provides many, many services - write-ups, awareness campaigns, political advocacy, hotline, etc, tools for finding demential residences, etc - but NONE of these, IMHO, is as important to the Caregivers as the ability to share the expertise of other Caregivers, both from current and past Forum members.   This expertise is simply IRREPLACEABLE and the fact that they have so carelessly replaced the previous Forum with this deficient one is inexcusable.  

 

   I will never raise monies for Alz Assn again - there are other organizations doing valuable research which deserve my monies more.

 

   I thank you from my heart for all of your fantastic support and expertise - and sincerely hope that a better Forum venue can be found in the future.

 

 


Marjk
Posted: Saturday, February 18, 2012 9:44 AM
Joined: 11/29/2011
Posts: 799


JAB, I just don't have words to express what I am feeling.  I can only hope that things work out again between you and the admins.  You are way too valuable here and I will miss you something awful.  I think most of us on here recognize your name as one who welcomed us and helped us tremendously when we first joined.  I will certainly follow your blog.
Marjk
Posted: Saturday, February 18, 2012 9:45 AM
Joined: 11/29/2011
Posts: 799


Formymotherinlaw, please start a new thread.  You will for sure get lost in this one.  There are many people on here will welcome you and give you great advice.
Mrs. Peanut
Posted: Saturday, February 18, 2012 9:53 AM
Joined: 12/21/2011
Posts: 10


JAB~I have not been visiting the site much since it changed, but when I do, I look for JAB postings. Much of what I have learned over the past three years have been from your responses. (For quite some time, I assumed you were employed by AA.)

 
I am so glad you have you are still reaching out on your own site, it has been very valuable.
 
AA--what are you thinking? What a disservice you have done to your site and your caregivers!

Heidi Liane'
Posted: Saturday, February 18, 2012 11:18 AM
Joined: 12/20/2011
Posts: 66


jab I tyoo will llook up yuor blog andbe e-mailiong  you too  I am so sorry AA did this to yuo too so veryvery sorry itwas done tome byanew co owner too witha fibro board so sorry but I will keepin touch with yuo too and willmiss yuo here too stay well take careof yuorself my fuirned who has givenme manymany good links toreadnad get thibgs for myDh tooheidi
Geege
Posted: Saturday, February 18, 2012 11:32 AM
Joined: 12/15/2011
Posts: 31


JAB, may God bless you for all you have done for others. 

 

I have written down you blog address before Admin decides to delete this stream of posts.

 

I truly wish you and your husband the best. And you're absolutely right about them not having a clue what caregiving entails. I think anyone in the decision making branches of Alzheimer's Organization should have at some point been a full time caregiver so they would 'get' what we're going through and the needs we require just to keep going each day - 'friends' on the board who are so willing to help and just an ear to our voice when we need to talk and no one else wants to listen.


KatK4
Posted: Saturday, February 18, 2012 12:20 PM
Joined: 12/2/2011
Posts: 100


The 3 shining stars....JAB, Grassflower, and Cathy JM...all gone?  What a pity.  Things just aren't the same on this board and I really long for the good ole days-if there are good ole days in the land of Alzheimers.
Zolly
Posted: Saturday, February 18, 2012 12:31 PM
Joined: 12/15/2011
Posts: 2286


JAB

I know you wil come back and read these responses. And I highly suspect I have seen your Blog before? Sorry, I have forgotten the link. But to save you another trip to the woodshed, send me your Blog address:

 

Good people sign their personal requests. Photo if you need one:

 

Ken Garrett

kg777@comcast.net


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folly
Posted: Saturday, February 18, 2012 3:00 PM
Joined: 12/6/2011
Posts: 31


I find the calculated destruction of a valuable resource at the expense of members in need unspeakably sad.
MLB61
Posted: Saturday, February 18, 2012 3:19 PM
Joined: 12/2/2011
Posts: 726


Dear JAB -- I want to thank you from the bottom of my heart for the support you have given me the past two years.  I wish you and your husband all the best as you continue on this journey.  

 

In large part, it is because of you that I was able to find the strength to "pull up my big girl pants" and do what needed to be done for my parents.  It wasn't easy.  When I came here as a newbie, my parents were in danger, and I was completely unprepared to handle them.  When I needed to know which way to turn, you were usually the first one to answer my questions or point me in the right direction.  

 

Both of my parents are nearing the end of their journey.  I have complete confidence that I did the best that I could for them.  Your support was invaluable in reaching this point.  You will be missed.  Thank you.


skericheri
Posted: Saturday, February 18, 2012 6:31 PM
Joined: 12/10/2011
Posts: 260


JAB---From day one you tirelessly attempted to help anyone and everyone.  Shame on the Alz. Assoc. for re-initiating an old policy without informing you...and...then being petty enough to go through your posts editing and deleting links.

 

We have been on opposite sides on a couple of issues.  I 've been sitting trying to find the right words to convey my thoughts.  I can't.  The best that I can do is to say...

 

I'm so sorry...and...You will be missed.


Iris L.
Posted: Sunday, February 19, 2012 3:39 AM
Joined: 12/15/2011
Posts: 14451


JAB wrote:

  

Regarding the member survey, our product developers think this is an excellent idea and would like to discuss this with you in more detail. You have been and continue to be an active member and leader of our online community, so we feel you could generate a good deal of interest in this.

 

 

    

 

  

 

Email from Admin@AlzCon to JAB, dated  Thu, Feb 9, 2012 at 9:02 AM

 

 

Dear JAB,

 

 

  

We also wanted you to know that we are still interested in working with you on a user survey, as previously mentioned. Whether or not you decide to participate in this process, we deeply appreciate you introducing this concept to the community.

 

 

 

As a three year member of these boards I am appalled at all of this.

 

JAB posted about a Member Survey, but why should she have to do this when we members have been posting our concerns and complaints since December 2011, when this board opened?  We have been REPEATING OURSELVES constantly about our concerns and complaints.  If the Design Team wants a Member Survey, they, who are paid consultants, should perform the Member Survey.

 

I posted a link to this thread on the two patient boards, "I have AD" and "Younger Onset AD" so that the patient members can read for themselves why JAB has been forced out.  JAB has been on these boards daily to help us patients, giving us more information than we have learned from our own doctors and other professionals.  She has been a lifeline for us.

 

I see no reason why this is even an issue.  JAB has done nothing wrong!  The Association posted Terms and Conditions threads at the top of each message board on the old board.  This has not been done on this new board.   In any case, we are all adults here.  We know how not to click on links we don't want to view. 

 

The Association made changes to attract new members.  How can they attract new members but run off a valued emeritus member? 

 

JAB, I thank you from the bottom of my heart for all your wisdom and support for me. 

 

Your blog will become one of my daily sites to visit.

 

Iris L.

 

 



txghostwriter
Posted: Sunday, February 19, 2012 8:29 AM
Joined: 2/10/2012
Posts: 4


I thought personal attacks were against policy. What Admin has done to JAB and a few others who dared to speak their minds sure looks like a personal attack to me.

 

Just a side note to Admin, most of us are aware of pay-per-click ads. That is hardly the same as selling one's own product or services. It might behoove you to rethink your interpretation of that particular policy.


elena
Posted: Sunday, February 19, 2012 8:51 AM
Joined: 1/10/2012
Posts: 5


Dear JAB,

 

I can't imagine this forum without you. But then I could never have imagined the loss of years of threads from experienced caregivers with information and support that was priceless, easily accessed with the "Find" function or bookmarks. Nor could I imagine that links to sites with essential information would be banned because of ads, in essence putting blindfolds on those in desperate need of every bit of info available.

 

Thank you for your tireless efforts and delivery of critical research always provided with care and kindness.

 

Keeping you and your husband in my thoughts and prayers.

 

Goodbye to our precious JAB.


John891
Posted: Sunday, February 19, 2012 8:52 AM

Too bad many of the good and supportive people who have been here for years are leaving.  I have also felt discouraged since I suffer with memory problems as well and don't see much support there anymore. I mean in the boards where people suffer with EOAD and JAB was most definitely a major contributor there.  As a result of seeing the supporters and encouragers leave, I have not visited this site much lately.

 

I'll continue to come here for advice since I know I will need help dealing with mom as her disease progresses, but I am also dissatisfied with this new forum.

 

John


AlphaLeah
Posted: Sunday, February 19, 2012 9:41 AM
Oh JAB, no words. 

Thank you for everything, and we'll stay in touch.
jfkoc
Posted: Sunday, February 19, 2012 10:07 AM
Joined: 12/4/2011
Posts: 12555


While the reactions of the "new. improved" format of the message boards run from "I love it" to "help, I can not get on" the fact remains that what used to be a five course meal is now just dessert and a Twinkie at that. 

 

There will be some who are content, even happy  with a Twinkie. It may be all they wan/needt. There will be some who will miss the full meal but be OK with the Twinkie. There are some who will not fare well on just dessert.

 

There is a seriousness to the demise of the old boards. I personally believe that many lives were heavily impacted by them....relationships were saved, legal and social systems navigated, medical care improved. All this was accomplished in a supportive and caring manner and carried out by those who took the time to share more than a shoulder. They shared the cumulative (sp) wisdom of all who had ever posted. The boards themselves were a library of knowledge.

 

Yes,  "it is what it is. If " what is" is all you need this will be a great place for you. However, please  take a moment to appreciate the changes  brought about just this year by the efforts of those who took their time for the benefit of all.

 

On behalf of the many to whom these boards were a life line, the many that will need that line in the future and those who know not what has been lost, I say thank you, bravo and well done!!!

 

 

 


Debbie 1951
Posted: Sunday, February 19, 2012 1:21 PM
Joined: 1/1/2012
Posts: 138


Dear JAB

Like many others have said, you are a wealth of information and will be truly missed. I am very slow when it comes to even using goggle, as many of you know since I still can't do much of anything on this site. I appreciate everything you have personally helped me with. All of the information on this site is so valuable I am so lucky to have found it. I will follow you also, especially if I need help. My mom is about where your husband is, and your ideas are so close to the things that I need. I know there are so many great people here that are always willing  to take that extra step for someone. Thanks to them also. God Bless you and your DH, and keep your faith, and take care of yourself also.

Warmly, Debbie 1951


 
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