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 Use of information 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Use of information
Irene,
Where is that information on privacy posted on the LBDA Forum? I couldn't find it anyplace.
Robin


Tue Oct 11, 2011 12:34 pm
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Joined: Mon Feb 14, 2011 10:22 pm
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Location: Portland, Or
Post Re: Use of information
Quote:
Frankly, I am dismayed by this adversarial attitude. We should be delighted that someone is writing another Lewy book. We should be proud that one of us is making a contribution to the small pile of material available for new caregivers. Instead we assume that our "privacy" is being invaded. Nevermind that anyone with internet access can already read everything we ever wrote. Nervermind that none of us has read the book yet and that the author assures us that she has not used any personal information from these forums, we jump to the conclusion that she is being disloyal.


Well said, Jeanne! I agree.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Tue Oct 11, 2011 12:39 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 727
Location: LA
Post Re: Use of information
Quote:
Dorthea said at that time "I think your writing will prove to be quite valuable as time goes on. Not only to yourself but to caregivers everywhere."


I stand by my previous post. I was, nevertheless, shocked to find one of my poems on google. If resding the poem without knowing about Lewy Body it gave the wrong impression of Mr. B. I also found the final report from Mayo of his condition.

I know anything we put on the internet is there forever. That was in my first lesson learning about my computer! I tell it to my grandchildren all the time!

When we wrote our poems, it was with the understanding that perhaps they would be included in a book. All that has faded into the past with nothing being done and when I looked on the forum for the "Proems" so I could have copies for myself, I could not find them. Irene searched to no avail. We talked about it being our contribution to 'spreading the word'. It did not happen. I found great comfort and understanding in that project. I wish it could have been completed for the general public.

When Pat has her book published, I am standing in line for my copy. I would be pleased if she included something I have written on her pages. She need not say I had given her the thought, I would know and I would smile.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Tue Oct 11, 2011 2:26 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Use of information
Robin,
It is not and that's why I couldn't locate it either but it was on the LBDA website which was located with help . I have included a copy also in the Welcome area for any future newcomers, because I can see how a person might think it is a private forum and we needed to clear that up !

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Irene Selak


Tue Oct 11, 2011 2:33 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Use of information
Dorthea,
Yes the missing proems is sad as I know many who wrote did pour their hearts out in their's but during our crash some months back it was the one thing we weren't able to locate!

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Irene Selak


Tue Oct 11, 2011 3:23 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
katelu wrote:
Jeanne, the posting you provided a link to is titled "The need for social support," not "I am writing a book." If you will look, you will see that this is a thread that I paid very little attention to.
Kate


The first sentences in that post are "I am working on a book for Stage One LBD Caregivers that addresses ways to adjust and cope when you first get the diagnosis or while your loved one is still in Stage One. The quest is to find any and every thing that will extend this stage of the disease as long as possible---to "preserve personhood", as my husband's neurologist says is our primary goal."

Kate, Pat mentioned again and again that she was writing a book. It is entirely possible that the topics she posted on were not of particular interest to you so that you did not read them. That's certainly OK. Lurkers or people who never register don't tell us what, if anything, they are going to do with the information they see here. Pat, as a loyal member, did tell us. She told us, for example, that she wanted our feedback on some of her text. She told us that she was not including anything personal from the forums. I cannot understand your hurt and disappointment, though I certainly respect your right to your feelings. I just think Pat is getting a bum rap here, and that doesn't seem in keeping with the mutual respect I see so much of on the forums.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Oct 11, 2011 7:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Use of information
BayouCajun wrote:
6) now for the part that I need explaination for…
Sometime back I reached out on this forum and asked if anyone was researching early stage as I still have tremendous insight into this…I am special…Mayo diagnosis, Mayo research subject, Dr. Boeve is personal doctor who diagnosed me, I getting ready to attend Mayo Habit program….I have something to offer, and I am in the open….I was warned for that….and I respected that request and deleted some of those posts…..which I thought was unfair…..to me….for in possiblity of information exchange with a researcher…..the exchange with hopefully be mutually beneficial…..
So….how is this different….?

I was specifically that researchers were not allowed on the forum….they did not come here….by PM….please explain…in the open….

It is okay to be a researcher on the forum and post this? and ask specifically for answers to questions to be put into the book?
It is not okay for a patient to ask if there is a researcher on the forum? so the paitent might be helped?


Craig, I trust that Irene's post explained what is allowed/discouraged on this site, and that Kate's post clarified the rules of journalism. I'd like to try to address your more personal concerns.

I think that we have multiple uses of the term "research" going on here. On this site we usually mean scientific/medical projects usually sponsored by a grant and with published outcomes of the type Robin kindly shares with us. In this sense Dr. Boeve is a researcher. Laurel (labeckett) who has a PhD talks about working with researchers. In this sense Pat is not a researcher.

Another common use of the term is just to mean looking up data. A homeowner may research bathroom designs and a hostess can research what is typically served at afternoon teas. In this sense I did research when I wrote my published book, but it has nothing to do with medicine or science. Pat is also this kind of researcher.

I remember the post you are referring to and remember that I was very confused -- I didn't know what you were asking/looking for. By the time I was going to ask for clarification it got pulled. Someone assumed you wanted to be part of a scientific research study. (As you now are -- congratualtions) They pointed out that researchers (such as Dr. Boeve) don't typically hang out on discussion boards, so this wasn't a good place to get a response.

I wondered if you were looking for a researcher in the other sense -- someone who could help you look up data. I thought maybe you wanted a ghost writer or a co-author. But as I say, before I could inquire further the post went away.

If you were treated unfairly, I suspect that it was confusion over what you were asking rather than a matter of intentionally treating you differently.

Pat wrote her book to tell her husband's story, and to share what they've learned that has helped them in the early stage. As you write your book you will be telling your story. If you learn things at seminars, in the research program, from these forums, in your reading that are relevant to what you are writing I expect that you will use those things, without violating anyone's privacy.

I wish you every success with your writing! (And I am not nervous knowing that there is yet another writer among us. Who can predict who might be inspired to turn their journeling into a book? 8) )

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Last edited by JeanneG on Wed Oct 12, 2011 12:09 am, edited 1 time in total.



Tue Oct 11, 2011 10:45 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: Use of information
Jeanne,

I also asked about the ghost writer,
and also a straight journalism researcher….looking for info…someone just like this author…..

it takes me awhile to reassemble all my thoughts….

I was trying to cover all the bases….I was reaching out to anyone out there who might be crawling along on GOOGLE….surprise, surprise….
and stumble across my plea….before I go further down this road and am not able to ask, nor share the TREMENDOUS insight (that you Jeanne have no clue)….
I was told no…..this was a private forum and all the implied secretcy and mutual respect and things don't go further than here….and the troops might get startled….

I was just asking for clarification…..

I asked to be recogonized as available to help others, or for others to help me…..and was told that might disturb the troops…..

and lo and behold….there is someone doing what I was asking about….and lo and behold the troops are disturbed….

troops….get a life….I will gladly trade with any of you….

as a patient I have no choice in this crap….none….
as a caregiver you are choosing to do this….or in the case of someone close to me….they choose not to….

there is honor in being a caregiver…..tremendous honor….
and I recogonize all of you for this….and shame on those who don't recognize this….you guys are the heroes….

patients….are just sick

so, since, there is no privacy, implied or otherwise, google crawls here like crazy….
the troops are up in arms….

If there are any researchers out there looking to gain tremendous insight into this disease…..PM me on the forum….don't disturb the troops….
researching for books and being research material is allowed on this forum….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Oct 12, 2011 12:00 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
dorthea wrote:
When Pat has her book published, I am standing in line for my copy. I would be pleased if she included something I have written on her pages. She need not say I had given her the thought, I would know and I would smile.

Dorthea


You are a classy lady, Dorthea! (But we knew that.)

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Oct 12, 2011 2:12 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Use of information
I said I wasn’t going to post anymore on this thread. But I feel this needs to be said.

Do you know what it is like:

To not be able to communicate with your loved one?

To be grateful if your loved one would call you ANYTHING?

To lift your loved one from wheelchair to bed to chair to toilet to car to – well, you get the picture?

To change your loved one’s diapers?

To have to shampoo your car seat because of your loved one’s digestive accident?

To watch your loved one panic and cry every time she feels the need for the toilet?

To have to massage a bowel movement out of her because her brain can’t tell her muscles what to do?

To have to explain to your loved one, every night, why she can’t “go home”?

To watch your loved one break down when you tell her who you are and she realizes just how much of her life she can’t remember?

To have to lift your loved one’s hand to help her maneuver her spoon to her mouth?

To sit with her while playing Bingo, only to realize that she doesn’t recognize more than half of the numbers, or even understand the simple game?

To watch her put stickers (name labels) on her food because she doesn’t understand what either thing is?

To take your loved one for an outing knowing it will take a week for her to recover her strength?

To wish your loved one would die and end her suffering?

To consider helping her die?

If you don’t know what these things are like, then you don’t understand just how personally devastating mid to late stage LBD is. Perhaps you don’t understand how badly we needed to be able to confide in each other. Maybe you can be forgiven for your callous attitude toward those of us who crave confidentiality. And maybe you’ll be lucky enough to never reach this stage.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Last edited by katelu on Wed Oct 12, 2011 3:33 pm, edited 1 time in total.



Wed Oct 12, 2011 1:53 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Use of information
Kate and Jeanne
You missmy point
I amcrying out
I was denied here to do thT
I am sick
It is a crying shame
You guys I worship
Y
Ou Missy derstand
I cry for help
May e here whe it could happen no more

I meant and mean no insult to anyone
I cry for help
I attended al-anon meeting Monday night
There I look for help too

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Oct 12, 2011 2:52 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Use of information
Craig,

I'm sorry if what I have written hurts you. I am just trying to explain that a caregiver for someone in the early stages of LBD is unlikely to have any idea what things are like in later stages.

Your posts and Tonya's have been very special to me. Much of what you have described are things I am feeling right now. I am going through cognitive testing. I won't get the results yet for a while. Next would be a sleep study and, if warranted, a PETscan. My family may be one of those in which "familial dementia" is featured. (I have another "do you know" list of the things that are scaring me.) You and Tonya have given me the courage to investigate my own problems. If you do nothing else in the world, I am very grateful for what you have done for me.

Despite what I am experiencing, I don't know how to help. Maybe my mom's LBD and my own worries are all I can handle. I have no answers for how to handle being the person with LBD. I'm terrified that I think I'll soon have the opportunity to find out. And you're right - no one gets it. The things that scare me are dismissed by my family and friends. And that makes it worse. I can commiserate, I think, but I don't know what else to do.

Thank you, Craig, for everything you have written.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Oct 12, 2011 3:08 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Use of information
Kate,

I don't have a caregiver….

I have been a caregiver for about 4 years now while at the same time getting to a point where I can no longer take care of myself…

I went to a Al-Anon meeting….

I don't have a alcohol problem….the person that lives with me has an alcohol problem….

now I am going to Al-Anon to recover from that persons addiction….

I am learning that I can not control the actions of my person that I care for….

by, but contrast, to help that person I have to abandon them….

which is what they have done to me….

and I learned that I shouldn't cover up for them, that they need to face the consequences of their actions….

which is me now being able to say, I don't have a caregiver and the reason why….

I truly am sorry for any hurt I have cause any of you at any time on here….

I don't understand what you are going through…I honor you all, and thank you all, that is very sincere…(even if I can never come back here)….you have helped me so much

you can at least bond through some mutual pain from a good number of people….

I don't have that number of people to bond with, I am an outsider everywhere, including here, and you are my best hope, my greatest resource

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Oct 12, 2011 4:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Post Re: Use of information
Craig, we all live with or work closely with people with LBD. I can't imagine that we would be hurt by anything you might write here, even if we don't always understand just what you mean. Do not worry on that account.

I am very sorry for your domestic situation. Is your care partner willing to go to AA? Are you still trying to work things out, or is this a final parting of the ways? (Not that you need to tell us. But whatever you do want to share is OK to share.)

I hope you will continue to be a regular contributor here.

I'll really looking forward to hearing about HABIT. I hope it is a very positive experience for you. It sounds like a strenuous schedule, and I can see why it is aimed at very early stage folks. Coy couldn't handle a schedule like that. I hope you can!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Oct 12, 2011 4:48 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Use of information
Kate,
I DO understand all the things you write about with the every day losses in this illness, I watched it first hand with my own husband, there were days I would hurt for him and then some days I hurt for myself and I also know the pain of not having that dear man with me anymore, sadly I don't know what Craig is going through except for what he writes and shares with us which I hope he continues to do.

I would like if we all can take a deep breath and please move on, it is now up to each person what they would like to post or not, I still believe we are all brought here in the name of Lewy Body Dementia, each seeking information, hints, tips and most of all comfort and sharing.

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Irene Selak


Wed Oct 12, 2011 7:37 pm
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