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 Brain autopsy 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 694
Location: LA
Post Re: Brain autopsy
No, Julianne, do not be discouraged! You continue to act "as if" and know the treatments are the safest possible or else you will have harmful meds that could cause all sorts of problems. It seems to me that you have recieved outstanding advice and your loved one is in the best possible care. The "probable" diagnosis is more to understand what meds should NOT be given than which ones can be tolerated. Each and every case of this illness is a personal one and not one size fits all except such things as NO Haldol, etc.

As more brain study is done, the real diagnosis can be given up front. Good luck as you continue to give care.

DrP


Sat Jan 22, 2011 7:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
I think this is a key point: (by DrP)
"As more brain study is done, the real diagnosis can be given up front."

The *only* way an MD can know that he/she got the diagnosis right or wrong is if there's autopsy confirmation. I feel confident that all the MDs who diagnosed LBD but now see that it was AD or mixed dementia (AD plus VaD, usually) think twice before giving an LBD diagnosis to a patient. As MDs learn more about the clinical-pathological correlations, their diagnostic accuracy will increase. An important step that enables those clinical-pathological correlations is brain autopsy.


Sat Jan 22, 2011 9:32 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain autopsy
Ah, Julianne, it blows my mind, too, to see how low the accuracy rate is for diagnosising LBD. Amazing! But it is probably better to err on the side of caution. No matter what the "real" diagnosis is, the best we can do for dementia now is to treat each symptom as it appears. We know that certain drugs agitate that tempermental guy called Lewy and if there is a strong suspicion that the symptoms and the order in which they appear matches Lewy's MO, then playing it safe and avoiding those drugs makes sense. It is also very helpful to understand the fluctuations in LBD, and if we experience that to know it is "normal" for this disease.

The fact that the diagnostic rate is so low is another reason, I think, to support the research in any ways we feel comfortable.

One of our local support group members was seeing a doctor considered a local expert and who is used by most people in the group. A few months before her LO's death that doctor told her, "I originally had my doubts if this was LBD, but now it is quite clear that he definitely has LBD, with perhaps some other condition as well." That autopsy came back with NO Lewy bodies, but identified other conditions. I would think that at the very least that particular doctor might be able to learn from the results.

What we all want, of course, is a test that doesn't have to wait to be done post mortem, and has a high degree of accuracy. But we are not there yet, and many of us feel there is value in knowing what it was we were dealing with, and in contributing to better knowledge via donating brain tissue to research.

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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


Sat Jan 22, 2011 9:33 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Brain autopsy
Since the rate of actual LBD is so low, why can't we have a more accurate list of pre-conditions and symptoms? If the numbers are that low, one would think the researchers would come to some conclusions.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 22, 2011 9:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Brain autopsy
From my non-medical perspective, it seems like there are so many neurological conditions and diseases which have very similar symptoms. Many overlap, some symptoms appear in many but not all people with, say, LBD or PSP or whatever. So, it seems like the chemical analyses that are being done post-mortem are the defining method for determining exactly what disease(s) someone had. With my dad, he had long list of possibilities. When I read in depth about each one of the possible diagnoses, I could check off about 3/4 of the symptoms of each of those diseases, but not all. And many of them had the same symptoms as the others, with a few unique symptoms thrown in. It was all very confusing, and it's no wonder I couldn't find a dr. who could say pretty definitively what the most probable causes of his symptoms were.
As several have previously said, it's a matter of trying to treat the symptoms as they appear without doing any more harm. 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.


Sat Jan 22, 2011 9:47 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain autopsy
Believe me, Leone, the researchers are diligently working on that kind of outcome. And a lot of money is being poured into research into dementias related to aging, because as the baby boomers age, the cost of caring for people with dementia -- not just the obvious costs of drugs and institutions, but the more hidden and very real costs of decreased workplace productivity as caregivers are distracted or must stop working, etc. -- will simply bankrupt us. Even if it weren't for humanitarian considerations, the costs are a huge motivator to direct great medical minds to this subject. This is not only going on in the US, but it is a global effort.

But no matter how much money is devoted to research, and how many brilliant minds are devoted to it, it cannot be done without donated brains.

Drs Brad Boeve and Carlos Shenck are very actively looking at a specific possible precondition -- they are trying to determine the relationship of RBD to LBD and PD. Other researchers are looking at other pieces of the puzzle. The global research community will, indeed, come to some conclusions. It won't be in time to help any of our LOs. We hope it will be in time to make care for our children's generation better, and to prevent or reduce the seriousness of dementia in our grandchildren's generation.

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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


Sat Jan 22, 2011 9:55 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Brain autopsy
Now that I think about it, the symptoms of even the common cold vary from one person to another because there are so many different bugs.

Dale does not drool - though he occasionally chokes on his food and drink. He is quite objective even now about his disease and condition.

However, he sweats and his temperature and blood pressure variations swing widely during the day. His mobility also varies a great deal during the day.

The one thing that is constant are the delusions and hallucinations.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 22, 2011 10:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Brain autopsy
Good news! The neuropathologist who will be doing my husband's brain autopsy when the time comes will use the brain tissue in his research! Derek would like that, I'm sure [being a former research scientist], and it makes me feel better about the whole thing in addition to determining the true pathology.

_________________
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.


Mon Jan 24, 2011 7:18 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain autopsy
Oh good! That is a nice situation for you, Pat.

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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


Mon Jan 24, 2011 7:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
Pat,
You might check to see if that neuropathologist actually publishes his research. You can do that through a PubMed search on his last name and "Dementia with Lewy Bodies".
Robin


Mon Jan 24, 2011 7:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Brain autopsy
Yes, he is published and is affiliated with the University of Washington in Seattle and board certified in neuropathology.

_________________
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.


Mon Jan 24, 2011 8:05 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
Well, if you are talking about Dr. Montine, he's well-known. But it's odd that UofWA wouldn't accept your husband's brain into their brain bank!

We have one local family who flies to Seattle once a year for research. UofWA is particularly strong on genetics and they have funding to pay for the genetics tests (while other programs do not).


Mon Jan 24, 2011 8:47 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Brain autopsy
Robin, I found the same situation with the UofW. Over a year ago I checked with Dr. Leverenz about the possibility of brain donation for research in WA. He looked into it through his contacts and told us that no-one was taking them. He did offer that he might be able to do or arrange for a family study since 3 out of 3 of my LO's siblings (and her, of course) have or had dementia (kind of scary, huh?). A family study was not possible for us logistically.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Tue Jan 25, 2011 11:49 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain autopsy
What a missed opportunity for UofWA.

AnnieN - what are you doing, if anything, about your mother's brain donation?


Tue Jan 25, 2011 2:25 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Brain autopsy
I've contracted with a neuropathologist in WA for a brain autopsy. If the neuropathologist can use the tissue for study and research then that's fine. If not, I will be satisfied with the results of the autopsy.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Tue Jan 25, 2011 3:13 pm
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