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 Brain autopsy 
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Brain autopsy
Robin or others: If there are no venues for brain donations for research in one's area and there is a neuropathologist willing to do a post-mortem brain autopsy for a fee, is it of any value other than just knowing for sure if it was Lewy? Could medical records somehow be paired with the autopsy results so someone can glean information from them? I'm asking because it's not that important for me to know whether my husband has LBD or not. I feel quite certain that he does but it would not necessarily serve any purpose to know for sure.

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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.


Fri Jan 21, 2011 8:02 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Brain autopsy
I feel the same way you do, Pat. When Del is gone, I know that it will have been from Lewy. He has every symptom. We would donate his brain if there were to be some avenue of research done with it. But if not, why do the autopsy. Nan


Fri Jan 21, 2011 8:11 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 699
Location: LA
Post Re: Brain autopsy
Quote:
Report is in
My dear forum friends, Some of you may remember that my husband, Mr Bobby, passed away on the 20th of November, 2009. I have received the report. I cannot begin to tell you how I feel having my thoughts validated. This was signed by Dr Dickson, himself.

I have said before, we are the first generation to suppy the scientists with information and for it to be acknowledged in this way lets me know we are going in the right direction.

DrP
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Mayo Clinic

Neuropathology Laboratory Birdsall Medical Research Building 4500 San Pablo Road

Jacksonville, Florida 32224

December 21 , 2009

Mrs. Dorthea Perrin

Dear Mrs. Perrin:

Enclosed please find a copy of the neuropathology report on your late husband Robert. He had multiple pathologic processes, including Alzheimer's disease (AD), Lewy Body dementia (LBO), and multiple infarcts (strokes). He also had changes consistent with long standing blindness. The tissue has been saved and will be used for experimental research.

I would like to extend our condolences to you along with our appreciation for allowing us to study tissue from your husband. I also appreciate your efforts in obtaining clinical information for our records. These are useful for understanding the pathology. It is only through the generous donation of tissue from loved ones, often at very difficult times, by individuals such as yourself that we are able to make any progress in research towards better understanding what causes, as well as how we may one day better diagnose, treat, and prevent disorders of this nature.

If I can be of any further assistance, please do not hesitate to contact me.

Sincerely,

Dennis W. Dickson, M.D. Neuropathology Consultant


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Pat, this is such a hard decision, isn't it? You want all the answers. Maybe my experiance will help. Robin helped me with all the plans eight months before Mr Bobby passed away. He died in a local hospital in Louisiana and, as you can see by the letter above, the research is being done in Florida. Everything went smoothly.

The decision you make will be honored by your friends of this forum. Everyone walks their own path and we care for you.

Dorthea

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"See this lady, she's 85, but she's nice"


Fri Jan 21, 2011 8:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Brain autopsy
Dorthea, I would love to donate his brain to research [preferably, post-mortem :lol: ] and, when he was cogent, he expressed a desire to do so. But no one in the Pacific NW is currently accepting brains for research purposes. I'm wondering if any useful information can be gleaned from an autopsy other than just his family's knowledge.

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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.


Fri Jan 21, 2011 9:03 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain autopsy
Pat and Nan,

I think it is generous of you to consider donation for science if the outcome is not of personal interest to you. So the question is, is there some way you can be assured that the brain will be used for research?

I suppose you have read Robin's detailed description, here http://community.lbda.org/forum/viewtopic.php?f=14&t=1290&start=0

It looks like others have found ways to get the tissue into the hands of researchers. I guess one factor would be whether the cost of procurement is consistent with what you can/want to donate. (Is this tax deductible, I wonder? I can just see it listed on the charitable contributions form: Furniture to Goodwill,$200, Miscellaneous items to Salvation Army, $150, Brain to research center, $1500 :lol: )

I hope you find a resolution that satisfies you.

Jeanne

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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


Fri Jan 21, 2011 9:23 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Brain autopsy
His daughter-in-law is a neurosurgeon--maybe she'd do it for free! :lol:

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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.


Fri Jan 21, 2011 9:41 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,

I continue to recommend that people donate brains to the Mayo Clinic as they are actively conducting LBD research. Chances are low that anyone diagnosed clinically with LBD actually has LBD. Given that, you may like to know that Mayo is actively conducting AD research as well.

If you are not interested yourself in knowing the results, then perhaps you can simply tell Mayo that you don't want to know. Do any of your husband's blood relatives want to know the results?

A lone neuropathologist cannot make use of the tissue. (Is that what you were asking?)

Robin

PS. Two LBD families I helped awhile back got their neuropathology reports -- one today and one last week. Neither had LBD. Both had AD and vascular dementia. (I don't know if either will post here. Many are embarrassed to post if the results are not LBD.)


Last edited by robin on Sat Jan 22, 2011 1:52 am, edited 1 time in total.



Sat Jan 22, 2011 1:46 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Brain autopsy
How would we get the brain from western Washington State to Mayo in a timely manner??

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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.


Sat Jan 22, 2011 1:51 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
FedEx


Sat Jan 22, 2011 1:52 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 699
Location: LA
Post Re: Brain autopsy
I hope I would have advised the Forum members if Mayo Clinic had diagnosed something other than Lewy Body because that in itself would have contributed to research. [Monday morning Quarter backing, right?]. Just as we have no wrong questions here, there are no wrong answers. We're all searching for a Yes or No, if not Lewy then what?

Something took over the body of my sweetheart. It turned out to be numerous things, one of them being Lewy. How hard it must have been for him. I know now that I could not make him well no matter how hard I tried, I had to let him go.

DrP


Sat Jan 22, 2011 2:18 am
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Location: Acton, MA
Post Re: Brain autopsy
I had posted yesterday, who knows where it went. My thought, could be wrong, but my grandmother and I had breast cancer so my girls started getting checked years before suggested, because of the family history. Who knows, science may have some answers in the future and knowing ones family history could be beneficial.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Jan 22, 2011 8:50 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Brain autopsy
I want to know at the end for an irrational reason. I want to know, for sure, what I've been fighting all these years. I'm so darned angry that my LO has had to suffer and struggle with this dementia for the last years of her life. We've worked really hard and done the best we can and she has had periods of good quality of life but I'm sure she would have preferred to continue traveling, reading, cooking, drinking an occasional glass of wine, knitting, owning a pet, living independently, etc. All those things have been denied to her. I want to know whether plaques and tangles or LBD proteins (or both or others) have been the enemy.

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


Sat Jan 22, 2011 11:52 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain autopsy
Gerry wrote:
I had posted yesterday, who knows where it went.


I've had this happen several times, and it is very annoying! But I think I know now what triggers it. If while I am typing a response someone else posts a response, the system doesn't post mine immediately when I click "submit". Instead it tells me that there are new posts in the thread and suggests I might want to read them before continuing. I can read them or ignore them, but in either case I need to click submit again to get my response posted.

So, sometimes we need to click Submit twice. It is easy to miss this prompt since we are so used to the response "taking" the first time.

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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 12:34 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Brain autopsy
Annie, are you going with the brain autopsy or are you donating for research [per FedEx]?

_________________
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 22, 2011 12:37 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Brain autopsy
It is a mindblower to think that the chances of someone diagnosed with LBD actually having it are so low. My mother's doctor already figured out my mother had dementia before my mother went to a big teaching hospital for further testing and diagnosis.

When that was done, the attending neurologist sat me down and explained all about why the diagnosis was LBD (well, technically probable LBD because there was no brain autopsy, but he spoke quite confidently about why nothing else made sense).

So I figure I have gotten The Word from a highly reliable source and until finding this forum, never realized that the diagnosis could be wrong, or that she could have more than one thing going on, or anything else of the kind. Wow.

It seems to me that all most of us want to know is what is wrong so we can have some idea of what to expect--though of course I now know that it can be only a general idea. What are we to do if we can't even be sure of the diagnosis? Seek more medical opinions, or at the end of the day, does it really matter?

I feel very discouraged, though I would always rather know the truth.

Julianne


Sat Jan 22, 2011 6:57 pm
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