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 Body donations 
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Joined: Wed Jan 28, 2009 2:34 am
Posts: 10
Location: Boise, Idaho
Post Body donations
I am new to the forums, but have been reading them for about a year. My husband has been bedridden for over 18 months because of inability to stand and support himself. I have diagnosed LBD, and the doctor says I could be correct. He had indicated he thought he had vascular dementia. I think the symptoms started around the time he had an ostomy because of bowel leakage in 2005. He has always had leg problems (had a new knee in 1998) and he fell a few times prior to 2005. He had to have support to walk, started the slow gait and bent over body in the early 2000's. I am his caregiver, 24/7. We had hospice when he first went into the hospital bed, but they had him listed as failure to thrive. He was eating and doing well physically so they moved him to home health because of catheter care. The first part of January they moved him back to hospice services because of dementia.
UTIs have been a big problem, he has been sleeping more lately and is now becoming less communicative. I will ask him a question and he will just look at me. Eating is becoming more difficult lately.
Knowing the end will come, I have begun looking into the best use of his and my body when the time comes. It has been mentioned to have his brain autopsied. Places that want bodies will not take them if any part of the body has been removed other than the eyes. I even contacted a research university thinking they could do both, but they do not have anything that will help. Not having medical records to verify his illness, I am not sure how much good his brain will do and wonder if giving his whole body will be better.
I know this is not the most comfortable subject, but I want our deaths to benefit those still living.
Any advice or suggestions. I don't want to wait until it is too late and some of his symptoms give me a feeling he is slowly leaving me.

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Thu Jan 29, 2009 7:08 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post No medical records to verify?
If this comes down to "either/or" please consider this. One of the hardest part of our loved one's treatment is because most of our medical team is still in the process of denial... Sharon your story follows the same path as so many others that we read about over and over again. The brain study is in its infancy and it will go nowhere without the brain study of people who have shown these symptomes. I'm sure you have medical records with whatever the doctors think is wrong with your husband. Who are we to go blindly along with what may be a possible diagnosis? The doctors have not sat in your home many of the nights at three o'clock in the morning while you wonder where in the world did the man that I married disappear to. Are the symptoms that you see and no one sees but you really the symptoms of someone with vascular dementia? Or is it something else entirely? I'm sure you want to know. Are you right or wrong? It is a noble thing for you to want to do something to help the most people. I have always felt the same but somehow finding out about this Lewy Body dementia seems to be left up to us to give such overwhelming evidence that "this is the way he/she was in life and this is the way the brain looks now". If, indeed, we are wrong then we should go meekly to a corner but I think not.

Perhaps it does not need to be "either/or". When you start asking questions, you may find some where to make use of more.

As usual, my heart cries when I read your story. We all know what you are saying.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu Jan 29, 2009 10:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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SharonN,

Wonderful that you are thinking of a loved one's death as benefiting the living.

All I can tell you is that at the university hospital where we had my dad's body autopsied, the brain tissue had already been removed (so that it could be donated to the Mayo Jax brain bank), and the pathologist who did the body autopsy had no issue whatsoever with the brain having been removed. Dad did not want his body donated but he was willing to have it autopsied and then cremated.

The brain is the most precious item in the body to be autopsied. But donating a body to science is not an insignificant gift. I would think that a teaching hospital would be very appreciative of this gift.

I don't entirely understand what this means: "Not having medical records to verify his illness, I am not sure how much good his brain will do and wonder if giving his whole body will be better." Why won't you have medical records?

The brain autopsy and the body autopsy are two separate things, done by two separate specialists. Having both is extremely helpful to all blood relatives. Medical records are important to have for the brain autopsy, but you need only provide the records from the neurologist/psychiatrist who treated for LBD symptoms. In the LBD diagnostic criteria, technically the neuropathologist cannot diagnose LBD unless he sees that there are clinical symptoms of dementia. The medical records are not even sought for a body autopsy.

Let me know if I can help you make arrangements for the brain donation to Mayo Jax.

Robin


Fri Jan 30, 2009 12:11 am
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Joined: Wed Jan 28, 2009 2:34 am
Posts: 10
Location: Boise, Idaho
Post Body donation
I appreciate the input. I was hoping someone could help me find the right location for donation of either/or brain and body.
Robin, the doctors have not really treated my husband for LBD. We only have a general practice doctor and he has only seen him a few times after being in the hospital for other things. We had just met him and started a file with our doctor when my husband had the bowel problem and was admitted for emergency surgery. We followed up with the surgeon after surgery. He then had a TURP performed by the urologist. The urologist also diagnosed his prostate cancer but suggested just watching it. My husband then had colitis and saw another doctor in the hospital and was followed by him. Next came pulmonary embolisisms with hospitalization. We did see the family doctor after that for testing of his blood thinner. That is about the only real contact we have had. Of course the dementia and hallucinations have been observed mainly by me and reported through home health nurses. My husband has not seen a neurologist. I have to call an ambulance to transport him anyplace so we don't go unless it is to the hospital for emergencies.
I am hopeful someone can direct me to someplace doing research on Lewy Body and maybe someplace that will accept bodies minus the brain.
Thanks for your help.
sharon

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Fri Jan 30, 2009 1:43 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Donna,
Welcome to the forums and I am sure you will recieve the help you are looking for, as to the DX none of us here had the true DX until after our loved one was gone.How in the world did you ever receive hospice care without some sort of DX because I know so many people who are turned away from Hospice? Just wondering.
I am glad that you have found a place to be able to come and share and ask.

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Irene Selak


Fri Jan 30, 2009 6:23 am
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Joined: Sat Jan 17, 2009 1:27 pm
Posts: 29
Location: Maryland
Post brain donation - special girl
Hi Everyone,
My 59 year old sister was DX with LBD w Parkinsons but she also was born with brain damage and has inoperable brain tumor which has made any DX very difficult since most Dr.'s don't want anything to do with her. "Why bother, she will still be retarded" is what we get ALL the time. Anyway, we finally got her accepted to one of the leading research hospitals Johns Hopkins in Baltimore last August (however we had to go thru the Emergency room and then demand that she be looked at). I called their Parkinsons (w LBD) brain donation registry and if you are a patient at Hopkins they will do it all for free. They even will drive up to 2 hours away to your funeral home to harvest the brain. However I understand the problem of people not wanting a brain (or body) for research. They have told me that because of her retardation and other issues that she may not be a welcome candidate for their research. Again, I am banging my head against a wall with prejudice. Even in her death, I personally think my sister would be a plethora of information to be learned in many different areas but alas......The person I spoke to was very kind and said she would get back to me and if they did not want her brain she would check around for other places. That was a week ago and I have not heard anything. Keep your head up, I am sure there is an answer for your dilemma out there and if anyone can lead you in the right direction it would be these caring people on this forum. Good luck to you and your family.
Tricia


Fri Jan 30, 2009 1:22 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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SharonN,

I can help you make the arrangements for brain donation to Mayo Jax, if you are interested in that. The advantages of brain donation there are: (a) some of this country's top LBD researchers (Boeve, Dickson) and clinicians (Ferman, Van Gerpen) are there, and they are actually doing research into LBD; (b) you get the neuropathology report back in 6 weeks' time. The disadvantage is that you have to find someone who can do the brain procurement, and this can cost between $500 and $1500.

There are two easy ways to verify that Mayo is involved in LBD research. First, go to pubmed.gov and type in "DLB Mayo." You get 20 papers. (I don't know any institution with as many research papers. Most institutions have none.) The reason Mayo can do this is they have MANY LBD brains. Most other brain banks in the US don't have nearly as many.

Second, you can go to the Search section of the LBDA Forum and type in "DLB Mayo" with author "robin." That's less exact than the first method because not all of the topics listed are Mayo research papers on LBD.

It doesn't matter that the MD has not treated your husband for LBD. Since there is no neurologist (or psychiatrist?), then you'd request the records in writing from the GP. If there was a GP before the current one, then you'd request those records too. The surgical and urological records are not needed. If a lot of the records are at the same hospital, then that's what I'd recommend you request.

Why do you want to donate your husband's body? Would an autopsy of the body be insufficiently generous? And the hospital your husband has been seen at will not accept a body minus brain donation?

Robin


Fri Jan 30, 2009 2:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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A few more points....

No research institution that I'm aware of is interested in looking at the whole body of a person AND KEEPING THE BODY, with the possible exception of a research facility near Sun City, AZ. (And I don't know if they'll pay for the shipment of a body from Boise, ID. They are interested in all sorts of bodies, not just those with LBD.)

There is nothing to be gained from an LBD research perspective in donating the body. I'm not aware of any LBD research that occurs on the deceased.

A body autopsy is an important part of the medical record (particularly in identifying the cause of death), but brain banks don't require this info.

Robin


Fri Jan 30, 2009 2:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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SharonN,

I read a report tonight of some Japanese research into cardiac tissue analyzed post-mortem in those with DLB to understand what sort of cardiac issues they had. The Japanese are far and away the leaders of cardiac research in DLB, PD, and MSA. You could look through some of my posts (author = robin) containing the words "cardiac" and "MIBG" to see if there are any US institutions involved in this research. That would be a place your husband's body could be donated to. (There might be great expense in transporting a body but this is something a funeral home could help investigate....as they are probably licensed to transport bodies.)

Robin


Wed Feb 11, 2009 4:35 am
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Joined: Wed Jan 28, 2009 2:34 am
Posts: 10
Location: Boise, Idaho
Post 
Robin,
I appreciate your help. I am currently in communication with Medcure in Portland,Or. They work with agencies needing tissue or body parts. I have asked if they have anyone working with Lewy Body. At this time they are not aware of any group requesting brain tissue for that reason, but they will try to find groups needing the brain for research or teaching. I am waiting to talk to them tomorrow to see if they will take the body if I have an autopsy done on the brain.
This seems like such a dread subject, but I am trying to find the best alternative. I looked up the Mayo site, but I am then left with how to use the rest of his body for a good purpose. It also will require a large distance to get the brain to them. I am also looking to donate my own body so I am not truly being gruesome. I am just trying to look ahead.

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Fri Feb 13, 2009 2:55 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Hi SharonN,

There are MANY brain banks that want LBD brain tissue for research, including Mayo Jax. I don't know anyone who wants the body or other body parts for LBD research.

Brain tissue is easily shipped via FedEx. Mayo Jax pays for the shipping charges.

Perhaps I'm strange but I don't find this subject gruesome at all!

Robin


Fri Feb 13, 2009 3:03 am
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Joined: Wed Jan 28, 2009 2:34 am
Posts: 10
Location: Boise, Idaho
Post Mayo Jax
Robin,
I am getting closer to concluding my search. Medcure will take my husband's body for research and/or education after I harvest the brain. I have been looking for donation information for Mayo Jax, but I am not finding it tonight, maybe it was another site I found that listed the requirements for donation. Anyway, do you have the site or information for contacting Mayo Jax? I have to contact the funeral home in Boise tomorrow to make sure they will harvest the brain before arranging with Medcure. Of course, none of them will guarantee acceptance of the body until death.
His body will not be autopsied, only used for research purposes. I believe you indicated Mayo Jax could notify me if they do find Lewy bodies.
Thank you for your help.
Sharon

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Tue Feb 24, 2009 2:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Hi Sharon,
I will email you.
If you have children or if your husband has any siblings living, I'd encourage you to request the body be autopsied. There's a goldmine of info there.
Robin


Tue Feb 24, 2009 3:21 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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I heard from my father's pathologist today. He said that bodies are either donated or autopsied. Bodies that are autopsied can't be donated, and bodies that are donated can't be autopsied. So you have to pick which is more important.

If you are working with a brain bank, brains must be donated in order to be autopsied. With a brain bank, you can't have one without the other.


Fri Feb 27, 2009 7:26 pm
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Joined: Wed Jan 28, 2009 2:34 am
Posts: 10
Location: Boise, Idaho
Post Body Donation
Robin,

I thought I would let you know and anyone else interested, I have finally after several months, completed the plans for donation. When he passes, the body will be taken to the hospital where the brain will be harvested for Mayo Jax. The doctor signed the order for the "autopsy" of the brain yesterday so I can have all the papers ready to go when the time comes. Because my husband is served through the hospital's hospice program and the doctor signed the order, I will not have to pay for the process. The rest of his body will be sent to MedCure in Portland, Or. to be used for research or tissue donation. Those papers have also been signed and sent. I have the forms filled out for Mayo Jax and they will be completed and sent with the body to the hospital.

I am glad that I started when I did because this has been a long process but I am feeling good about the decision. I have now addressed the death and can go back to dealing with the living with Lewy Body and I won't have to think about dying until it happens.
Sharon

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Fri Mar 20, 2009 1:29 am
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