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 ordered an autopsy "dementia work-up" only 
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 58
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Post ordered an autopsy "dementia work-up" only
I wanted to share that I ordered an autopsy for my mother to confirm/deny the presence of Lewy bodies. I will share the result in and around 90 days. It was a challenge to find out how to do this. The Hospice social worker discovered the only place in the state of North Carolina that would do a private autopsy is Duke University for the cost of $1,500. I called the Pathology department and spoke to someone immediately who helped me arrange this along with the funeral home. It really bothered me knowing her entire brain had to be removed, but I was assured that her body would not be compromised for the viewing at her funeral, and it was not. She looked like herself. I learned that had she died at Wake Forest Baptist Hospital or any other, I could order an autopsy free of charge. Since she was a Hospice patient, I knew this would not be the case, so it took some careful planning. Well, knowing her brain can be used for research is somewhat comforting, if it helps even one person avoid this nightmare. I will definitely be sharing the results as soon as I hear something.

Tue Jan 27, 2015 12:39 am

Joined: Wed Oct 01, 2014 1:49 pm
Posts: 120
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Post Re: ordered an autopsy "dementia work-up" only
Denshaw 1, I live in Wilmington,n.c., I think they do autopsies in Jacksonville n.c., Do you think they do that ? As fear as Robin Williams it sounded as if they took just a bit of brain tissue,Do you know about that? I want to do the same with my mom one day,Away to give back the Lewy community. Research is a great thing.I would donate her body if I could,I read that and heard from one of the doctors connected to lbda.lewy bodies are also found in the walls of the gut,I need to lesson to them again,we learn something new about this disease every day.My brother heard about just taking tissue from the brain and wants to do that one day for himself. But little does he know we could already have it,he's 50 and I'm 55,and learning all I can for my Mom and my children. My Mom has two other siblings that have lbd. The new leader of the Parkinson's and Lewy body dementia support group is a registered nurse and she did the same as you and he had lewy only.He was only in his 60's. PaulaL.

Fri Feb 13, 2015 7:20 pm
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