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 Summary of clinical features in DLB 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Summary of clinical features in DLB
Dorthea, what a kind and elegant caregiver you seem to have been. You are a role model for all of us.
Thank you for sharing.
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Dec 04, 2011 4:59 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Summary of clinical features in DLB
Your Dr. Smith's theory/observation is very interesting, Craig. I'm not sure I fully accept it, but it is thought-provoking. I suppose that most positive characteristics or characteristics that have been chanelled into postive uses could indeed be corrupted with the loss of inhibitions or executive function. Generosity could become vulnerability. Intense work ethic could become obsessions, self-reliance could become a liability, etc.

Does seeing if/how it fits into the past have a practical value in dealing with the behavior now?

Thanks for taking the effort to share these observations, Craig.

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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


Sun Dec 04, 2011 6:31 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Summary of clinical features in DLB
This is very interesting.....I feel that my personality has changed....not to my liking..... I have more OCD....but I used to have only a little very mild bit about neatness....now I am rather obsessed with having light bulbs turned off when no one is in a room.....bugs me....hubby takes it well.....I can let it go, but it bugs me...never used to....

Another thing Jeanne mentioned was loss of inhibition.....I overeat and hate it....that was not something I ever did before getting symptoms.......maybe it was manifest some other way....

Another change I don't like is that I feel I forget my manners or to be considerate, thoughtful, compassionate -to remember what is going on for others-this one is so important to me and my identity that it's the change that upsets me the most.....my meds have helped......I am hopeful I can work to make it a habit if it isn't going to come naturally.....

Edit to add: I think I dont forget other's needs, I just sometimes do not graciously express my thanks at the right time or with the words I would have once chosen......I hope I will always remain grateful and cognizant of other's needs even when I can no longer express it....it is strongly in my heart......


Best,
Tonya

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First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Dec 05, 2011 7:18 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Summary of clinical features in DLB
Tonya,
These sound more like FTD symptoms than LBD symptoms.
Robin


Mon Dec 05, 2011 3:14 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Summary of clinical features in DLB
Robin could be-genetics point to Lbd but who knows for sure without brain biopsy or autopsy, neither of which I am signing up for right now......
In the meantime ill trust my Neuro doc......

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Dec 05, 2011 11:27 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Summary of clinical features in DLB
Tonya, Coy has been less "considerate" throughout his journey. I don't see this as a personality change so much as a behavior change. For example, I recently had an overnight sleep study that extended through the following day. Obviously Coy was aware I was gone -- other people helped him to bed, got him breakfast, etc. Also I talked to him about it before I left. He never asked about how it went or what the results were. Certainly this behavior is very different from pre-Lewy days. I have accepted that he can't "be there" for me as he used to be able to. But I don't doubt that he loves me and cares about what happens to me. The Real Coy is still warm and caring. Lewy mostly gets in the way of expressing that.

Keep discussing these concerns with your wonderful husband. When you are up to it, help him to see that the real you is still there.

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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


Tue Dec 06, 2011 12:05 am
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Summary of clinical features in DLB
Thank you Jeanne! :)
Hope your sleep test went ok and that you get the care you need!
Best wishes,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Tue Dec 06, 2011 9:37 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Summary of clinical features in DLB
My husband was definitely an auditory learner, and at one time, a great story teller. He also mentioned many times that he could not get the words/thoughts in his head to stop. We always thought it might have been ADHD, but in reality it may have been lewy bodies operating at an earlier age. I forgot to mention that he has had very few [if any] visual hallucinations that I am aware of. However, he did have the REM sleep disorder for many years. To me these vivid very "real" nightmares are almost like a hallucination.
Roxanne [broken by lewy]

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My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Thu Dec 08, 2011 5:13 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Summary of clinical features in DLB
very interesting craig..

hubby has ptsd.. but he has been able to control most of it, by not feeling and shutting down all emotions.. but once this started, he couldnt control it .. and the emotions are just spewing out.. some are good, laughter, silliness, etc...others, not so good.. paranoia, anger etc!! lots of talk about vietnam...he is finally starting to deal with it after 40 some years.. all his hallucination are very violent... very!! its scary!! sometimes this quiet gentle man.. becomes someone i dont even know.. my heart breaks for him!!

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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..


Fri Dec 09, 2011 11:51 am
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