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 Use of information 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: Use of information
Privacy and confidentiality are deeply emotional themes, for all of us, I suspect, and even more so when it comes to our families and our health.

As Jeanne mentioned, I'm a researcher by profession, for many years, and a big chunk of my work (probably more than half of my 200 or so publications) are in AD or other chronic diseases of aging. Our professional leadership - NIH, the med school administration - tries really hard to keep us all extremely conscious of the ethics of doing research with human beings. We all have to get NIH training and recertification on research ethics every couple of years. Privacy, informed consent, and related topics form a big part of this training. So from my standpoint as a medical researcher, I would never, ever, in a zillion years, consider making any professional use of any posting on this forum. And if I ever tried to do so, I'd be in deep doo-doo with our institutional review board.

I do hope that my professional background can occasionally be of help to people here. Robin is a huge help to everyone in this regard, with her very attentive tracking of the literature. I may bring a different critical perspective to some of the papers, and occasionally to questions where I have specific background. In addition, there may be occasions where I can help raise questions and shape new research, drawing on what I've learned here about the general picture of living with and caregiving for people with LBD, but not any specific postings or examples. I hope my professional expertise is a feature, not a bug, in my participation.

But I want to be really clear that I'm not here in any way because of my professional work in dementia. I am here as the caregiver for a mother with LBD, hoping to learn more about how to cope, from the boots-on-the-ground experts. I'm pretty cautious myself about the internet; I try to act as if anything I write might just as well have been published on the front page of the NY Times. I'd be unhappy to see it there, and yes, I'd question the principles if not the integrity of someone who would do that. We don't have to make the kind of pledge here on confidentiality that you have to agree to if you have medical records access, and if you violated the terms, the sanctions here wouldn't have much in the way of teeth, compared to getting fired and sued. Still, I personally would prefer to have a forum sensibility that we keep a reasonable degree of confidentiality and build a community of trust.


Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Wed Oct 12, 2011 8:14 pm

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Use of information
on a lighter note….we can take to another thread or anyone can PM me…Kate….

I know….that I can help anyone…that is currently going through the maze of trying to get a diagnosis…whether for Lewy Body or just a Cognitive Disorder (NOS), MCI (Mild Cognitive Impairment)

the tests….
the symptoms…..many more than listed in any one place…
some of the personal shared stuff with people at Mayo and other places….

the feelings…
the information that I have been able to find...

from someone that truly gets it….while I can still pass it on

I am losing ground…just like everyone before me

thank you Irene for you comment….that means a lot to me….it feels like a big hug...

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 11:10 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Use of information
When I share, I tend to confide. I am too open.
When I confide, I need to trust. I trust too easily.

This is what I have lost here. Not solely because of a book that is being written, but even more because of the reaction of some that I trusted to my simple question and expression of concern. Thank God there were others who understood. Some of them, though, are leaving, or considering leaving, the forum. Without them, I feel alone.

It is always painful for me when I realize that my trust has been misplaced. It is never easy for me to recover that trust.

There are still people here that I respect and care about. But I feel that I am being accused of something. I just asked a question about policy and guidelines. The rest of you carried it beyond that. So then I expressed my worries. Some didn't like that. If this is not a place where I can express worries and confidences, why am I here?


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]

Thu Oct 13, 2011 9:15 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of information
Kate, if you left the board it would be a huge loss to the rest of us. You are a valued contributor. I value your insights; I would miss you.

You and I have had a clash of views on one specific topic. I would hope that will not color all the rest of our interactions on other topics. I am not sorry that I hold the view I do, but I am sorry that my presentation of it came across as callous.

I think that what you did to make your identity less discernable was smart. I hope that will decrease your discomfort level enough so that you can continue to add to discussions and feel the support of other members. This seems to be an especially rough time for you with concerns about your own health on top of everything else. You've given a lot to the board. It is time to receive, also. Please do not let this episode drive you away.

Hugs to you, dear Kate. I sincerely care about what you are going through.


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

Thu Oct 13, 2011 12:04 pm

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Use of information
i agree kate.. i hope by making your changes, it will allow you to feel more anonymous if read by others, not on board..

the internet is wonderful thing.. but one of the faults is not being able to see folks faces, smiles and emotions as they write and sometimes they come across sharper than meant... or completely different, than the poster wanted to express..

we are all going thru trying times in our lives. this board is wonderful haven and source of information and people like yourself, add so much ..

sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Thu Oct 13, 2011 12:42 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Use of information
I know it's a lot of work but you may be interested in deleting some of the posts you've made that contain personal info. Unfortunately most posts can't be deleted entirely; you have to leave one character in them, I believe.

Thu Oct 13, 2011 3:16 pm

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Use of information

Don't go, I would miss you. I've always felt that you wrote so beautifully and so intelligently that you said what I wish I could have said. I also have benefited from your experience with your LO; for a long time it seemed like my Mom was at the same stage and had many similarities. Even though her body is failing now, I know there is still much to learn. If you do choose to leave the board, please know that I appreciate you and wish you and your LO all the comfort that is possible. Annie

Annie, daughter of brave Marie, dx 2007 and in ALF

Thu Oct 13, 2011 8:56 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Use of information
Robin has offered an interesting thought and if you want to delete some posts and need help doing so I would be happy to help in any way that I can.

Irene Selak

Thu Oct 13, 2011 9:53 pm
Profile WWW

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Use of information
Kate, please, please don't go.
Ger xxx

cared for Dad who passed away on January 28th 2013 R.I.P.

Fri Oct 14, 2011 3:26 am
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