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 Final diagnosis: Severe Lewy Body Dementia 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Final diagnosis: Severe Lewy Body Dementia
My husband, Coy, had an obvious melt-down in early June of 2003, was diagnosed at Mayo clinic, with probable LBD, had extremely severe symptoms for several months, then settled into "early stage" symptoms for several years. He died in late November 2012, having been on hospice care at our home for five weeks. He donated his brain for research. I have now received a letter explaining the result.

He did indeed have Dementia with Lewy Bodies. The pathology in the brain was severe, as was his atherosclerosis. It is a wonder he lived so long and with such relatively mild symptoms. Why did that happen? The basic answer is, "We don't know." Three factors cited include "stamina" (ie, genetic luck), good care, and good response to drugs. Why did he respond well to drugs? "We don't know." It would be awesome if research could uncover some predictors of who is most likely to respond well.

Is there a hereditary component to this disease that his descendents should be aware of? "We don't know." The expectation is that this will be much better understood within the next five years.

It was extremely important to Coy that he contribute in some way to greater knowledge of this terrible disease. I am so grateful that conditions allowed the donation of this brain.

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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 Oct 10, 2013 12:06 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3336
Location: Vermont
Post Re: Final diagnosis: Severe Lewy Body Dementia
Hi Jeanne - my condolences on the loss of your husband. That is certainly positive that some researchers think there will be more answers in the next few years, especially for those of us who have had a person with LBD in our families. Let's hope the research continues. I hope you are finding some peace in your life knowing that Coy is no longer suffering with this debilitating disease. Take care, 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.


Thu Oct 10, 2013 9:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Final diagnosis: Severe Lewy Body Dementia
Jeanne, I am sorry to hear about Coy. You did your best to make his life with Lewy meaningful. Has it taken nearly a year to get the results of the brain autopsy?

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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 Oct 10, 2013 9:52 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Final diagnosis: Severe Lewy Body Dementia
Yes, Pat, it took 10 months to get the results.

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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 Oct 10, 2013 11:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Final diagnosis: Severe Lewy Body Dementia
I guess it's good to know for sure. Hope his contribution will help to further knowledge about the disease. I'd like to think that, in the future, no one will have to suffer from Lewy.

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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 Oct 10, 2013 11:15 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Final diagnosis: Severe Lewy Body Dementia
Hi Jean,
So sorry to hear about Coy! I am glad you were able to get the findings, and hope with all my heart that the generosity both of you have shown in sharing this information will help to move research forward. We keep trying, and someday we will find a path to treat those who are ill, and even to prevent LBD.
Laurel

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


Mon Oct 21, 2013 12:01 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Final diagnosis: Severe Lewy Body Dementia
jeanne...
so sorry to hear of coys passing....thank you both, for doing all you could , to help advance research on this horrific disease.i read so many of your posts with awe... and i'm sure coy did better than expected, because of your excellent care... like others, i hope you are doing well...have thought of you often..
((()))
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..


Thu Oct 24, 2013 9:34 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 251
Post Re: Final diagnosis: Severe Lewy Body Dementia
Jeanne, Thank you for sharing Coy's results. The more information that gets out, the sooner a cure will be found!

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


Fri Oct 25, 2013 5:38 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Final diagnosis: Severe Lewy Body Dementia
Dear Jeanne,
Please except my deepest condolences on your loss of Coy, we can only hope he is in a better place.
Please take time to take care of you now !

_________________
Irene Selak


Sat Oct 26, 2013 6:07 pm
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