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 Looking for PROGRESSION OF Lewy B DISEASE list (unofficial) 
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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
Well, there's a whole other discussion about whether such documents are even helpful. When first diagnosed, you are desperate to find anything you can. But I think eventually you realize that these sorts of stages "guidelines" are not very useful, particularly when the stages overlap!

Fri Jan 21, 2011 12:00 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Looking for PROGRESSION OF Lewy B DISEASE list (unoffici
I agree with you on both points, Robin. In the beginning most of us are either in denial or we want to know everything we possibly can -- even things that aren't really knowable. (Or first we are in denial and then we want to know everything.) But when we actually have lived with Lewy a while we realize that even what we thought we knew isn't always helpful or accurate, and we take it on a more day-by-day basis.

(This isn't unique to us LBD caregivers. I was the same way about diabetes when I was first diagnosed with it.)

I find it useful to many threads here to know whether people are talking about an early stage person, one with more advanced symptoms, or someone probably in end stage. But it really doesn't make any difference if they label it "stage 2" or "stage 17" or what list they are basing it on. What works in the earliest stage(s) is often not appropriate at more advanced stages, but it is also true that what works for one person may not work for another who is supposedly in the exact same stage. To me it is enough to make a vague stab at "early, middle, end" for stages, without strict definitions of what that means. And that is just for the purpose of putting a conversation in context. But I know I had a different attitude in the beginning.

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

Fri Jan 21, 2011 12:21 am
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