Nora KleinPort Saint Lucie, Florida (USA) Born in 1969 tradition: Jewish
(Submitted August 03, 2008) Alzheimer's disease has stolen all my hopes and dreams. My once vibrant husband now exists in a dementia facility. He no longer knows who I am or that I am someone who cares about him. Former friends no longer call. I am a married widow.
This quote from our site somehow made it to a national web site "Speaking of Faith". As you can see it includes my home town, religion and age. This info was NOT from our site. What concerns me is that outsiders are farming our site and it makes me uncomfortable.
I believe JOAN has copywrite protection on her blogs, I somehow thought our comments were also safe. Imagine, in our litiguious society, someone using our posts against us in court...especially people like me who used their real first name.
Anyone who read our posts here can also copy and paste them. As we are always being warned, don't post anything ANYWHERE that you don't want put out there for anyone to see.
If you're a married woman, you have used your maiden and married name, people use a nick name--Bob for Robert, Peggy for Margaret, etc. We may use a middle name or initial, it's endless. Recently I had a financial transaction and used my personal preferred name. When the papers arrived for me to sign, my name had been changed to one I used some years ago with an initial. It was still my name, it was legally OK, but I realized someone had looked up my name and saw an alternative use and simply put that in. It bothered me no end and I have no way of finding out who, what, when, why or how it happened. There is simply NO privacy for anyone, AD list or not. It's scary as hell.
Here is the web site-actually very good reading http://speakingoffaith.publicradio.org/www_publicradio/applications/formbuilder/projects/your_story/category.php?name=alzheimers&list=1
That was a couple of years ago that it was submitted, Nora. Are you sure you didn't send it in yourself? I might have done something similar a couple of years ago and not have the slightest memory of it now..
But I agree - one should not post here things one doesn't want others to read. thealzheimerspouse.com is not a private web page and although we can't post without registering, we can read and many of us read for years ("lurked") before posting. The alzspouse group on facebook IS a private group; I agreed to be the keeper of the key and people can request to join by emailing me (name in profile) but I don't monitor it or often even visit it. I don't visit facebook much, period.
Everyone must understand that ALL message boards and forums on ALL sites, including the Alzheimer's Association, can be read by anyone. You cannot WRITE on message boards unless you register. All information you provide on this board and others when you register is PRIVATE, and neither I nor any other message board administrator who is ethical will provide that information to anyone. I NEVER, EVER, EVER, give out the private registration information to ANYONE unless I have the person's specific permission in writing. Also, I DO NOT have anyone's passwords or real names unless you provide them in the registration information.
Be careful what you put in the PUBLIC PROFILE that can be seen by anyone.
Nora,
It's unlikely that the information you found on yourself came from this site, because you never provided that information here. By the way, the DOB is wrong. At least I don't think you were born in 1969. ( >>>grin<<<<<)
Joan-you are a very bad person-I like the DOB they posted (GGGG). Actually if you click on the red balloons the proper age does show up. I know the personal info didn't come from this site and that is part of the reason I am upset. "outsiders" troll the site and can find out too much about any of us. I did email the site to protest the invasion of my privacy. The site is legitimate. Clare-I know I never sent that post anywhere else but here.
Nora = you can google your name and it shows your address and phone number. google has an option where your name is removed from their search engines. I remember doing that a few years ago.
It even has the link to the quote you are referring to.
I've googled my name, in all its variations including both Starling and a compound name with my maiden name where a middle name would be. I've been on the Internet forever. I'm pretty sure that netcom had the first dial up service in the US, but there is information about me out there from when I was "doing" Usenet and email through a local BBS.
There is a huge amount of info out there. The funny thing about Starling is that what I've done with that is mostly hidden since the name is also the name of a common bird.
The only reason I have a photo on this site is that the photo was also attached to the Starling handle from other sites because I was doing a lot of digital scrapbooking for several years.
I was reading 'about' this web site. Sounds like their quotes can also come from statements made on their radio program or meetings. It is a fact that our information is assessable and when someone wants something, they will get it. Just think of all the places we have entered our SS# - you can't get credit, bank accounts, apply for jobs (I have been rejected because I refuse to give it before hired), doctors/dentist office (a dentist we just went to refuses to accept anything but credit card with drivers license unless you give them your SS# - this includes cash), utilities, and the list goes on. YET - the SSA says not to give out your SS# except for SS business. That is a big laugh.
I agree, Charlotte; Medicare also says carry your card with you at all times. Look at your medicare number - look familiar?!!
I'm like Starling; I've been on the internet for many many years, both with my own name and with "briegull". First of all, I don't really mind and several old friends have found me, long before Facebook. Some things I used to be able to find when google had the old internet lists searchable - opining about the marvels of Mac's System Seven, for instance. I just don't attach much importance to my name. Now pinpointing where I LIVE, I might object to in something like Nora's case. OTOH, I really appreciate being able to find people's phones in Searchlight.
Very Interesting and my own recent experiences are disgusting. Just two as examples: I called our insurance carrier last week where me and my wife each have a policy to give them change of address. Guess what. They changed my address, but, said that she would have to call them to change her address. Hyppa. A few weeks ago, before I got moved here, my DW had a terrible nose bleed (they had given her to much Warfarin). They sent her to the ER and I had our son go there. The Dr would only talk to my DW because of privacy. Hyppa and Dumb. She can't call the insurance company (or anyone else) and change her address and she couldn't communicate with the ER doc.
Our son finally got to tell the Dr that she has Altz and that he would speak for her and it finally got worked out. But, this was after 20 futile minutes had passed.
On the ins co., I sent them a change of address with their check for our premium and they processed the chg of add.
Frustrating and I don't handle frustrations as good as I used to.
I get lots of 'scarey' e-mails warning me of identity theft, stuff like this occurring. But, when I check things out, I am told that, basically if I cancel out all of my personal information ( address, satelite photo info, telephone, etc.,) it screws with the 911 system. BUT, that has nothing to do with the information we post here or anywhere else, right? I'm wondering.....when you post anything ANYwhere, is it considered "public domain"....I'd have to ask my lawyer stepson (ARE YOU READING THIS, JOSH??), but we aren't talking......as usual.
My opinion - anything put out in the WWW is public domain. Unless it is a secure site like banks, it is open for all to find. In fact, probably banks are too. If all the programs like NCIS, Criminal Minds,etc are even close to true, if they want it they can get it.
I'm with briegull and so far nothing scary has happened. Facebook has been fun for me. I have been friended by so many of the kids who grew up in my neighborhood who are now living all over this great country of ours. It has been so good to hear from them and share in their lives.
I was told by somebody never to put anything in writing, ANYWHERE, if you were not willing to chance seeing it on the front page of a newspaper. There is no such thing as privacy anymore.
As far as I can discover, the bank sites, brokerage sites, etc, are secure and you don't need to worry about them. A level down are the merchants like Amazon which does keep track of your purchases. Remember all those pages you have to "read" and agree that you abide by their terms? usually they say something to the effect that "we may use your data in the aggregate (to suggest stuff you'll like) but not in the particular - not your name or personal information. A few sites of this level HAVE gotten hacked and it's taken very seriously and, for instance, if you ever bought something ever at TJMaxx, which had a security breach, they've given you free credit reports for a length of time.
Agreed that you should be careful about what you write but honestly, most of us are so insignificant and our activities so mundane that people aren't going after our info. too much trouble! I did, however, have a scary thing happen to me the other day on Facebook - I opened a message from a friend I hadn't heard from in a while and whoosh! like that, a message similar to hers (which was a scam) had gone out to many other people in my address book. Not all. I'm sure she'd done the same thing from others. And just as fast as it arrived, it disappeared!
I use a mac, so my exposure to viruses is almost nil, but you still have to watch that you don't fill out info on any site that doesn't have the "secure" mark. I also keep track (sort of) of several passwords - one minimal one, as for here, another for sites where I buy things, and a very different one for the really secure sites like banks, etc.
I've been mugged twice (in Europe) and had to cancel cards. Online, I did have services I didn't order charged a couple of times, so I am careful not to buy unless I see that secure lock at the bottom of the site.