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 Stages and Life Expectancy? 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
Sorry, I am unable to locate that document now. I looked for it for someone else and it seems to have vanished when I got a new laptop. If I run across it I'll make a posting to that effect. The caregivers who wrote it asked that it be taken off the forum a while ago, but I'd received a copy before that, which is stored "somewhere". I can tell you that it was a "stages" document, written by caregivers about their experiences. It was not a "scientific" article so maybe that was the issue? Don't know. I found it useful myself and wish I still had for those who might find some use from it. So sorry, Lynn

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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.


Sun Jan 19, 2014 6:20 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 310
Post Re: Stages and Life Expectancy?
ddaschel, It sounds like you need to call in the football fans and ask for a little help! It is very hard to talk about all this with our LO but everyone, including your LO, will feel better once you've talked about it and made a plan. Worry itself (and exhaustion) may kill us before any disease does!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Sun Jan 19, 2014 7:38 pm
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Joined: Wed Jan 08, 2014 8:01 pm
Posts: 4
Post Re: Stages and Life Expectancy?
Me too. All I can say ddaschel is me too. I can identify with every word you said. I feel desperate to get my hands on that report - so how do we send you a pm, Lynn? Please explain.


Thu Jan 23, 2014 5:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stages and Life Expectancy?
I have it in my files but I'm not sure how to post it or even if I should, as it was taken from another source, is not scientific, etc. If anyone would like, I could email it to them. Just PM me.

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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 23, 2014 5:53 pm
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Joined: Tue Oct 09, 2012 11:29 pm
Posts: 10
Location: North Bonneville, WA
Post Re: Stages and Life Expectancy?
how do you pm on this board?

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Diana (53), married 32 years to Mike (57). His symptoms started probably around 2008, we started knowing something was for sure going on in 2011. LBD dx made March 2014.


Sat Jan 25, 2014 4:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stages and Life Expectancy?
Good question! Maybe you can't. How about I email it? Just let me know.

_________________
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.


Sat Jan 25, 2014 5:09 pm
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Joined: Tue Oct 09, 2012 11:29 pm
Posts: 10
Location: North Bonneville, WA
Post Re: Stages and Life Expectancy?
I would really appreciate it if you could e-mail it. I completely understand that it isn't official researched document, but I'd appreciate knowing what others have experienced. Can you send it via this board or should I post my e-mail address?

_________________
Diana (53), married 32 years to Mike (57). His symptoms started probably around 2008, we started knowing something was for sure going on in 2011. LBD dx made March 2014.


Sat Jan 25, 2014 11:43 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stages and Life Expectancy?
If you use the email in my address and send me your email I can send it to you. I don't think emails from the forum allow for attachments. I have it in a Word file.

_________________
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.


Sat Jan 25, 2014 11:54 pm
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: Stages and Life Expectancy?
While not exhaustive or extremely verbose, the following link from the Mayo Clinic has information relative to life expectancy if you click through the information.

http://www.mayoclinic.org/diseases-cond ... n-20025038

Wishing you the best on your journey,
Alan


Mon Jan 27, 2014 4:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
That's a good site to look at Alan, especially for people who are just learning about LBD for the first time.

The "stages" document that various people have referred to, if my memory serves me correctly, was something a bit different. I think it was divided into at least 3 - 5 stages, which listed symptoms that may be somewhat typical of that particular stage. Eg., "Early stage" might have something like "starting to lose interest in social relationships" or "has difficulty walking and shuffles a lot", etc. "End Stage" might be "has stopped eating & drinking" or "sleeps 22 hr. a day", etc. It was helpful to those of us trying to get some handle on life expectancy so we could make a more educated guess at planning things like living arrangements, financial issues like paying for home care vs. facility care, whether we should move our LO, etc.

I wish that I could find it even though it wasn't scientific and even though it had to be taken off the LBD forum site. It at least gave CGs a rough idea of what to expect, when.

Peace, Lynn

_________________
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.


Mon Jan 27, 2014 5:10 pm
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: Stages and Life Expectancy?
While I can't find the specific document you are looking for, the research I have done suggests that the stages of LBD are very similar to those experienced by Alzheimer's patients.

The following link contains information from another blog and speaks about the seven stages of dementia progression - there is a reference to the researcher but not to peer-reviewed medical research. As such, I provide it simply for information purposes.

http://livingwithlewybodyebook.blogspot ... pdate.html


Tue Jan 28, 2014 10:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
Thanks for posting this - it might be generally helpful to many people. Since LBD can present itself very differently from one person to another, it will be useful to remember that this is 1 person's observations about 1 person. Much of it does not fit what I observed in my dad - his personality changes, "masked" face, toileting issues, inability to put on his socks and shoes, leg pain with ankle swelling (1 ankle only) & Parkinson's shuffle were noticed before I ever knew anything was really wrong. It was through those early symptoms I began questioning his PC dr. about what was going on, and he said "probably Parkinson's". Interesting how some of those symptoms are way down the list for this person. It's basically impossible to come up with a real definitive list of symptoms and assign stages to that, but this does give you a general idea of what is to come…

Best to all of you today, Lynn

_________________
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.


Tue Jan 28, 2014 2:17 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 88
Location: Canada, Ontario
Post Re: Stages and Life Expectancy?
Hi All; I read a book I got from the Alzheimers Soc. Library here called the 'Lewey Body Roller Coaster' or the Roller Coster of Lewey Body'. Think I'm losing my own memory sometimes! And another book the authors are a couple whose last name is Scobel or something like that. They follow from diagnosis until a year after their death. They lived in Toronto, Canada during this time. I found this book helpful and supportive for me. I believe the title is 'Loving and Forgetting', this is one couple's experience with LBD. Anne


Sat Feb 08, 2014 2:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
Sounds like a good resource - thanks for posting! Lynn

_________________
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 Feb 08, 2014 3:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
Sounds like a good resource - thanks for posting! Lynn

_________________
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 Feb 08, 2014 3:47 pm
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