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 Looking for PROGRESSION OF Lewy B DISEASE list (unofficial) 
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
Post Looking for PROGRESSION OF Lewy B DISEASE list (unofficial)
Hello.
A while back I found an unofficial listing of Lewy Body Disease Progression on this site. It may have just been a link to another page.

I know it was unofficial and there is no set progression but this was very helpful to me and followed what was happening to my dad well (especially when you took all the fake symptoms caused by medications removed from the mix) .

I gave a copy to a nurse a while back and now I cannot find my original or where to find it back.

Can anyone help?


Sat Dec 11, 2010 6:48 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
It was removed as per request of the LBDA as it orginated with the caringspouse support group !

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Irene Selak


Sat Dec 11, 2010 9:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
Feel free to *email* (no PM) me and I'll send you a copy.


Sat Dec 18, 2010 5:32 pm
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Joined: Wed May 26, 2010 12:53 pm
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Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
Robin, may I have a copy as well? I wanted to ask your permission instead of emailing you out of the blue.


Tue Jan 18, 2011 9:35 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
Please email me out of the blue!


Wed Jan 19, 2011 12:34 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
We could all use it without it being posted, if we all get a copy and refer to it in our postings as the Caring Spouses List or something. I found it helpful and it would make a good base line for our discussions.


Wed Jan 19, 2011 2:26 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
since we are still trying to figure things out at this end, would appreciate a copy as well.
thank you so much..

cindi

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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..


Wed Jan 19, 2011 11:18 am
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Joined: Thu Dec 30, 2010 12:52 pm
Posts: 19
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
If this list is still available I sure would appreciate a copy.


Wed Jan 19, 2011 7:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
As indicated above, email me if you want me to send you a copy.


Wed Jan 19, 2011 7:33 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
I can understand the desire to have some idea -- even some unofficial idea -- of where in the progression our LOs are, and what might be coming next. There are several out there, if you do a Google search. The trouble is, anyone can put out such a list. Some are no doubt much better than others, and the one referred to here from the CaringSpouse website may be one of the better ones. I sure don't know.

BUT, since CaringSpouse does not want it distributed outside their site, and LBDA does not want it associated with this site, is it really fair of us to continue this kind of exchange? I really, really think LBDA is offering a very valuable support medium with these discussion boards, and I'd like to repay them by observing their requests -- even if I don't always agree with them.

Doesn't that seem fair to you ... we get the benefits of this site, and we respect the rules and requests of this site?

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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


Thu Jan 20, 2011 7:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
Not sure you are specifically addressing what I'm doing or not. In case you are, note that I received permission back in 2007 to distribute the stages/phases list via email (text) when it was completed. I never asked for permission to post it to a public forum, so I have not. I never asked for permission to distribute the Word document, so I have not.

I assume others who circulate the Word or PDF document that they obtained from the caringspouses website do so in belief that they are permitted to do this. (Someone previously posted to the LBDA Forum that they would email another Forum member the document.)


Last edited by robin on Fri Jan 21, 2011 12:02 am, edited 1 time in total.



Thu Jan 20, 2011 10:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
I haven't circulated anything. I e-mailed a copy of the document to another member of the Caring Spouses forum--who would have had access to it anyway--but that's all that I know of.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 20, 2011 10:56 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
Indeed, the Word document of the phases/stages is available on two of the three LBD-related Yahoo!Groups - caringspouses and LBD_caregivers. Check their websites under the FILES section.

And the stages/phases are posted publicly to the ElderCare Forum. If you do a google search on the title, "LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES," you'll find the stages/phases quite easily.


Thu Jan 20, 2011 11:10 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
Ok enough about the stages document, it doesn't matter who has it and what they are doing with, or where is is listed just so long as it isn't listed here on the forums !

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Irene Selak


Thu Jan 20, 2011 11:32 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
robin wrote:
If you do a google search on the title, "LBD APPROXIMATE PHASES AS SEEN BY CARING SPOUSES," you'll find the stages/phases quite easily.


Actually, anyone Googling "lbd stages" will run across it and others as well. I don't see a particular need to be offering it through these forums.

I know that people are acting out of a wish to be helpful. We are a very helpful bunch of people! I just want us also to be respectful of LBDA's wishes in this matter.

_________________
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 Jan 20, 2011 11:37 pm
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