View unanswered posts | View active topics It is currently Thu Oct 30, 2014 2:31 pm



Reply to topic  [ 43 posts ]  Go to page Previous  1, 2, 3
 Stages of Lewy Bodies 
Author Message

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Hallucinations
Oh, yes, I've gotten to the acceptance part long since, but when he is paranoid and wants to leave the house or the room and shushes me because I might antagonize the boogeymen, I'm not always sure how far to go along or what might calm him. I use relaxation techniques with him that I know, tell him they haven''t hurt him yet so probably won't, but sometimes it takes a long time to calm him.


Mon Apr 05, 2010 7:49 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Kathy,

The best advice I have to offer is to read Dr. Boeve's Continuum paper so you can figure out other meds that might work so you don't have to use antipsychotics.

You might consider tacking your post on to this one about hallucinations:
http://community.lbda.org/forum/viewtopic.php?t=1896

There are many posts about treating and coping with hallucinations. You can browse the forum areas for topics about hallucinations or start a search here:
http://community.lbda.org/forum/search.php

Robin


Mon Apr 05, 2010 8:55 pm
Profile

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post Stages document
Please be advised that the "stages" document posted on this forum was not posted in it's entirety. Nor was permission to post sought from the authors.
Sincerely,
Sue Lewis - faciliator of the Caring spouses "Phases" project


Fri May 21, 2010 1:25 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Sue,
Can you post the official version of the stages document? Is there a reason it needs to be under wraps?
Robin


Fri May 21, 2010 1:30 am
Profile

Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
Post 
Hmmm you'd think the project would be interested in what the caregivers here know and would be sharing.

the Stages information whether posted in its entirety or not.... with permission or without.... I certainly found it extremely helpful.

I am interested as Robin says - It would be great to get the official complete document and information. It would help the 'project' to get feedback from the caregivers on this site.


Sun May 30, 2010 11:04 pm
Profile

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
Goodness sakes...lets not allow ego to prevail here...we are/were all caregivers, have much information to share and need all the help available. Stages would have been a helpful guideline to follow no matter who the authors were. I don't think accolades have anything to do with it. All associations can learn from and support each other. Lets not politicize the issue of dementia. We are all here for the same reason....help...support..information. Share everything possible be it stages, stories or other. I know I could not have made it through to the end without this forum and will always be thankful for those who helped me while on the path and to the end. As always, my continued thanks to all. Blessing to those of you who are on the journey.

_________________
Dianne C.


Mon May 31, 2010 12:42 am
Profile

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post Phases Document
Egos and accolades had nothing to do with attempts to keep the Phases document in it's original form. When created we had no idea of how it might be "misused" but knew there was probably potential for such activity.
The document is intended for anyone to use but, there is no convienent way to make it accessible.
I understand and respect the reasoning behind LBDA deciding not to post the Phases as part of the LBDA site. In fact, I never asked them to consider posting it. Unbeknownst to me, someone else had. It was not their place to do so but, there you have it. The first inkling of potential misuse.
I must say, when you painstakingly give of yourself and work hard on something, you don't appreciate seeing someone's else's name on it. That's ethics, not ego.
Good stewardship and integrity are what I'm aiming for (and some revisions - now that I have retired from caregiving).
Sue Lewis



Mon May 31, 2010 1:52 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post 
So, how can those of us who could use the info. see the original document and its authors' names? It says at the beginning of the posting that it is a document being compiled by members of the Caring Spouses group. Was that not true? To whomever wrote it - can we please see the whole document now and with the authors cited? I have found it helpful in my understanding of the disease whether it is 100% accurate or not, it does give a general outline of some specific symptoms and observations of the order in which some people may experience them. It wasn't presdented here like it was meant to be a 100% perfect explanation for all with LBD, but a useful guide. Lynn


Mon May 31, 2010 11:23 am
Profile

Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post No Sweat
At this time, all I can think to do is send folks who request a private email with the correct document attached. A bit lame I know but better than nothing.
Regards,
Sue


Mon May 31, 2010 1:04 pm
Profile

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
No intention of getting into a contest here about what is sharing and what is misuse. I don't like to assume things but it sounds like perhaps some form of legal paperwork issue. If someone posted something they shouldn't have that issue should be addressed with that person specifically. That said, when people post, as we do here it is already public knowledge as anyone can view it. At times in my professional career I too shared many things without compliments or renumeration but did so because others could benefit by or utilize information which bettered their lives. LBD is a very wicked disease and anything anyone can do to help the caregiver or their LOs get through their journey in a more informed, educated manner should be made available to them in a selfless, positive mode.
My thoughts of support to all of you today. You are all doing a wonderful thing for your loved ones. Stay strong and take care of yourselves.
And... to all Veterans out there...thank you for your service to our country!

_________________
Dianne C.


Mon May 31, 2010 7:57 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post 
Ditto on thanking our veterans and current service personnel.


Mon May 31, 2010 8:27 pm
Profile

Joined: Fri Jul 23, 2010 3:34 pm
Posts: 6
Post Re: Stages of Lewy Bodies
How do I check a private message? Or how do I send one? Bobbie


Sat Jul 24, 2010 12:26 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Stages of Lewy Bodies
At the top of the forum pages it'll say "no new messages" or "1 new message" and you click on that. That will get you to your messages. To send one to someone, when you look at their posting and there is a tiny little almost unreadable thing that says "PM" that means "private message". The person will get it and be able to answer you via another PM.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jul 24, 2010 2:15 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 43 posts ]  Go to page Previous  1, 2, 3

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr