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 Pertaining to Brain Donation 
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Pertaining to Brain Donation
I have enough time "After the care" to move on into the world and I'm doing quite well, I think,. I have family and friends and many interests. I make my own schedule and live alone as I am wont to do. I still feel connected to everyone on the forum and wish I could help. I devote a portion of my day to reading the new posts.

...and I think! A few minutes ago I was shocked when the thought hit me. I would like to believe that I participated with the brain donation gift because I wanted to help with scientific research. I sincerely hope that was part of it but I know the truth of the matter is that I felt the strong need to know without a doubt exactly what it was that took Mr Bobby away from me after we were married 67 years but dating and in love a total of 70 years, since 1940. So now you know, I'm really not that noble, I just wanted to be able to say, factually, "this is the way it was" and I am so thankful that I did. Yes, it was LEWY BODY and Alzheimer's [and I could not make him well-- only as comfortable as possible].

Feet of clay???

Dorthea

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


Mon Mar 21, 2011 8:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Pertaining to Brain Donation
Dorthea,
I think another point you made so well in the past* is that brain donation for you was the logical extension of giving care to your husband. In a sense, it was the final act of care.
Robin


* viewtopic.php?t=1570


Mon Mar 21, 2011 9:07 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Pertaining to Brain Donation
Dorthea - I think that's great that you still feel good about the decision you made re: brain donation. It is a difficult and very personal choice. I feel just as good that my sons, sister and I made a different choice and that none of us regrets that choice either. It's important to be comfortable with the choices that we make, and sometimes we wish we'd done things differently, but we do the best we can do with the data and feelings that we have at the time. That's really all we can ask of ourselves and each other, isn't it? And, it's important to be respectful of others' philosophies and opinions, and not badger each other with our personal beliefs.
I hope everyone has a good restful night, 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.


Mon Mar 21, 2011 10:36 pm
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Location: SF Bay Area (Northern CA)
Post Re: Pertaining to Brain Donation
In encouraging brain donation for several years now, I've learned that there is definitely a group of people who cannot countenance broaching the subject of brain donation (or, anything related to death, for that matter) with family members. And there's a much larger group of people who have never even heard of brain donation -- never knew such a thing was possible, never knew this is the *only* way to get a confirmed diagnosis, and never knew that brain research is critical to discovering the cause, treatment, and cure for all sorts of neurodegenerative diseases. It's like encouraging people to write advance care directives and discuss these with family members -- it can never be brought up too often in the community dealing with these conditions.


Mon Mar 21, 2011 11:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Pertaining to Brain Donation
I agree with all but your last statement, Robin, and will respectfully agree to disagree.

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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.


Mon Mar 21, 2011 11:37 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Pertaining to Brain Donation
Dorthea, I'm glad you had the satisfaction of knowing the true diagnosis. That in no way detracts from the benefits you and Mr Bobby provided the research community and through them future generations.

Feet of clay? That surprises you? Why should you be different than the rest of humanity? :lol:

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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 Mar 22, 2011 12:45 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Pertaining to Brain Donation
I don't think any amount of research, at this point, will help my children, IF, they should develope this horrible disease, but with the donations and time, maybe my grandchildren and their children will benefit. I would guess that most of us are organ donors, brain donations won't save someones life but dementia is not the way anyone should have to live out their final years. :cry: We all do the best we can and appreciate the respect we receive from this family of caregivers, they truly have saved my sanity. Have a good day!
Gerry

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


Tue Mar 22, 2011 6:05 am
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Joined: Wed Sep 30, 2009 8:25 am
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Post Re: Pertaining to Brain Donation
This is not a topic I could bring up with my husband or his family (my MIL lives with us and is a Lewy sufferer). Mostly they are in denial. One sister-in-law still cannot talk about her father's funeral, and that was ten years ago. My MIL has never visited her husband's grave and refused to even discuss a tombstone. Definitely not something I can bring up.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Tue Mar 22, 2011 7:34 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Pertaining to Brain Donation
Donna, My sister has a problem discussing anything about death, or actually "after" death. Frank and I talked about brain donation several years ago, he was still with it. We both filled out the forms to donate our brains and I've told and showed our girls where the info is, just incase.

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


Tue Mar 22, 2011 7:53 am
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Joined: Tue Feb 23, 2010 10:32 am
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Location: Kalispell, MT
Post Re: Pertaining to Brain Donation
If you are the one making the decisions, how would the other relatives even know? You could, if it seemed appropriate, tell them about it after the results come back.


Tue Mar 22, 2011 11:12 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Pertaining to Brain Donation
Dorthea,

IF I were to request brain donation for my mom or an autopsy, I'm with you and a big part of it would be for my own needs, I'm not that altruistic.

But I have other problems. I have Mom's POA and my sister is her designated medical representative. My sister has a very strong personality and she has already stated to Mom's doctors that her brain will be donated. Personally, I'd like to have that autopsy done, at the least.

But, Mom very specifically stated in her Medical Directive that she did not want any part of her to be donated. I was there when she made that decision and I tried very hard not to voice my own opinion. This was completely her desire. I understand that. Her background would make her more comfortable, even if cremated, if she had assurance that she will go to her Maker whole. The fact that her mother went through 5 amputations and God knows where her legs ended up may have something to do with it.

When Mom passes, I will assure her that her wishes will be faithfully followed, no matter which, or how many, of her daughters disagree with them. I'll have the directive to back me up, and if the sister who is med rep wants to challenge Mom's ability to make that decision she will in effect be challenging the paperwork that makes her medical representative. And, if she won that argument, the entire thing would end up in the hands of our bipolar sister. So, I think I'm pretty safe. But it still hangs in the back of my mind that the arguement could be pending.

Dorthea, congratulations for having the courage to say "this was for me." I think, for many of us, the same would be true - or at least partly true.

Does anyone know what an autopsy costs or if it even costs? And does donation really have to be the whole brain? Or does some donation for research involve only tissue samples or "slices?" In my case, I'd rather they do some non-invasive studying of my brain than break my promise to honor Mom's wishes. We know that LBD probably showed up (and is showing up) in the two generations before me. They might get more out of it.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Mar 22, 2011 2:08 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Pertaining to Brain Donation
katelu wrote:
very specifically stated in her Medical Directive that she did not want any part of her to be donated.
I understand completely. Dale also made it a part of his 'Advanced Health Care Directive' that no part of his body should be used for research. In fact, it says, "I direct upon my death that my bodily organs NOT BE DONATED for any purpose." That is quite specific.

It was a change from his wish earlier.

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


Tue Mar 22, 2011 2:35 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Pertaining to Brain Donation
I firmly believe that each person's wishes regarding the disposition of their body should be honored if it is possible to do so. (A body lost at sea may not be able to be buried in the hometown cemetary, but most wishes can be honored.) The time for discussion is when the directive is being drawn up, or ideally long before that.

If Kate's mother wishes for her body to remain intact, that is what should happen. If Dale does not want to donate any part of his body, that should be the end of the matter.

I like to see the option presented and for everyone to know the possibilities, but I'm opposed to pressure or even persuasion. Each person should be allowed to decide and have that decision carried out. If there is no directive, persons making the decision should honor what they know of the person's genral outlook and beliefs.

Many years ago, before his fall on his head and long before Lewy, Coy and I were discussing with his sleep doctor the interesting things science is finding out about the sleeping brain. I asked how they knew some of these things, and Dr. Schenck explained about studying postmortem tissue. Coy said, "Could you use my brain for that study?" The upshot of that was Coy signed up for brain tissue donation, and Dr. Schenck assured him that he didn't want that particular gift for a long, long time. 8)

In an early post-Lewy visit to the Mayo clinic, Dr. Boeve offered us a brochure about brain tissue donation. Coy said, "I've already promised my brain to the Sleep Center. Can you share?" Dr. Boeve assured him that, indeed, the tissue could be used in both sleep and dementia studies.

I will be glad to know exactly what has been going on in Coy's brain. But his decision was his, for his reasons. It is very important to him. He has asked Dr. Boeve what should happen if he dies away from our home area, and he reminds me to take his directive with us when we travel.

I firmly believe that each person's wishes regarding the disposition of their body should be honored.

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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 Mar 22, 2011 3:30 pm
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Location: SF Bay Area (Northern CA)
Post Re: Pertaining to Brain Donation
As part of the announcement of the $1 million gift to Mayo to study LBD, Mayo's world-famous neuropathologist Dr. Dennis Dickson and neuropsychologist Dr. Tanis Ferman made a video on the role of brain donation. It's terrific. Here's a link to the video and some notes I took:


Role of (Brain) Autopsy - Mayo Video, 7 minutes
http://www.youtube.com/watch?v=Gc0CklPfkU8

Dr. Ferman brings up brain autopsy at the very beginning of her interactions with patients, when death is not an immediate concern. Dr. Dickson discussed the benefits of brain autopsy -- it brings a sense of closure, it provides a confirmed diagnosis, and it contributes to research. Dr. Ferman talks about those families who weren't sure at first if they'd go through with brain donation. She says that they wanted to know the diagnosis for the sake of their children. And there were lots of families who just really wanted to know. Dr. Dickson notes that the diagnostic accuracy was less than 50% for LBD but he says the accuracy is greatly improved now. He says that it's an under-recognized disorder. Dr. Ferman makes the points that there are so many atypical presentations of LBD that autopsy is the only way to know for sure. Dr. Dickson talks about doing a genome-wide association study in LBD. Dr. Ferman points out that we know about the usefulness of acetylcholinesterase inhibitors in LBD because of brain donation. And we know that other medications are not as helpful because of brain donation. Dr. Dickson points out that the autopsy improves the clinical diagnosis. He points out that we've learned what the signature symptoms of LBD are through brain autopsy.


Tue Mar 22, 2011 5:25 pm
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Location: SF Bay Area (Northern CA)
Post Re: Pertaining to Brain Donation
I've helped over 100 families make the arrangements for brain donation. Perhaps one-third (maybe even as many as half) fall into the category of "never discussed with donor." The healthcare POA solely made the decision about brain donation. Most people wait until the person is on his/her deathbed before making these arrangements. (This is one reason why I bring up the topic of brain donation often. People are receptive to the message at different times and often not until hospice is called in and death is near.) Of the "never discussed with donor" group, I would say most healthcare POAs "justify" the brain donation on the basis of "my spouse/parent/sibling was an organ donor and would want to help others" or "my spouse/parent/sibling was a research-minded person and would want to help others through making research possible."

As long as Kate's mother appointed the sister as the healthcare POA, that sister can make the decision about brain donation. I don't know what will happen if Kate protests the brain donation. I've never known of a pathologist to request to see the medical directive (or the document naming the healthcare POA). The healthcare POA extends beyond a person's life so that would be considered the spokesperson for the body of the deceased. Further, some medical directives state explicitly that the person doesn't want to donate his/her organs upon death. Brain donation is different because the brain is not being transplanted into another person. I guess you won't know, Kate, until the time comes what will happen. It's very unfortunate that this couldn't have been discussed while your mother was able to have the discussion.


Tue Mar 22, 2011 5:59 pm
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