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 Pertaining to Brain Donation 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pertaining to Brain Donation
While I happen to favor donating brains for research or getting brain autopsies performed, I can certainly understand why some would be emotionally upset at the prospect of their LOs brain being extracted from the skull, shipped by FedEx across the country and cut into numerous pieces for research. Yes, it's necessary for researchers to get brains to study, but for heavens sake, don't make people feel that, if they don't like the idea, they are wrong. They are not wrong. They just don't make the choice you would have them make. :|

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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.


Last edited by mockturtle on Tue Mar 22, 2011 6:15 pm, edited 1 time in total.



Tue Mar 22, 2011 6:06 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
Kate -

You asked: "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."

I assume you are referring to brain autopsy rather than body autopsy. If so, these questions are addressed on the first page of this post on "Brain donation":
viewtopic.php?f=14&t=1290&start=0

If you paid someone to do it, the cost is about $3K. You'd have to work hard to find a neuropathologist to do it as usually it's pathologists who perform autopsies. Not all neuropathologists have seen the various mimickers of Lewy Body Dementia so wouldn't know what pathology they are looking at. If you donate a brain to a medical research facility, there is no cost to the family for the analysis. There can be a cost to the family to have the brain removed; it depends on the medical research facility. (Brain procurement for Mayo Jax costs between $500 and $1500 for nearly all cases.) The entire brain is removed. How would pathologists know what slices to take if they only took slices? And they'd have to remove the entire brain to even cut a slice. You can certainly donate your own brain upon your death. Many neurologically normal people who have donated their loved one's brains intend to donate their own brains upon death.

Robin


Tue Mar 22, 2011 6:11 pm
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Joined: Thu Jun 10, 2010 11:18 pm
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Post Re: Pertaining to Brain Donation
Wow, this thread made me log-in for the first time in months. I soooo agree with the thought that brain donation is a personal decision and no one should be judged either way. I remember when I posted for the first time back in June...my Dad had just gone into the hospital and I was a nervous wreck and looking for some support/answers on here. Most of you were so beyond wonderful, BUT I think almost the first reply was if we were donating my Dad's brain. Really? He had just entered the hospital, the entire family was devastated, and I was going to discuss with my 72 year old religious mother if she wanted to donate his brain? As I read more posts on other threads, I noticed this happening there as well. Someone would post for the first time, and almost immediately be asked about their plans for brain donation.

I think there is a time and place for this type of discussion, but it is definitely NOT when someone is first posting, distressed and asking questions about symptoms, length of illness, when to call in hospice, etc... Maybe there could be a separate section titled "Info on Brain Donation" or something. I almost was scared off permanently and I'd hate to think someone else will experience the same.

I wish all of you luck with your loved ones. I think you are all amazing and your stories often bring tears to my eyes.


Tue Mar 22, 2011 7:27 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
Jill,
I think that people should know about the option to donate brain tissue, but I agree with you about the timing of such information. In the discussion between Mayo doctors that Robin refers to above, it is clear (and I know from my experience there) that the topic is brought up in a low emotion context. Not at the first meeting where diagnosis is discussed, but soon thereafter, long before end stage. It is just one more piece of information that patients and family should know about.

It does give some people comfort to know that "there is something I can do. Some small good can come of this." And that is a good thing. So the information and opportunity should be available, but certainly without pressure or judgment.

I'm sorry you felt uncomfortable on your first visit. I'm glad you didn't entirely give up on us.
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


Tue Mar 22, 2011 8:14 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pertaining to Brain Donation
There should be some place in the forum introductions where new people could voluntarily answer some questions which might include the 'brain donation' question. The list of questions might include whether the one posting is the child or the spouse of the patient and perhaps the length of time since the diagnosis. One of the questions might be 'what name do you want to be known by?' It's something to think about.

It is somewhat annoying to be asked the 'brain donation' question several times. I've answered it more than once and I've seen it too often to count.

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


Tue Mar 22, 2011 8:37 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: Pertaining to Brain Donation
Since this was my memo to begin with I hope I can put every mind at rest by letting you know that it was never intended to be debated for what was right or wrong. In 2007 I joined this forum and have made numerous friends. We have laughed together, prayed together, cried together. As my journey with Mr Bobby came to an end, I revealed many strong emotions and how I reached decisions. I thought the friends who are still here would be pleased to know where I am in this stage after all is said and done. I don't think anyone who has known me for very long could ever accuse me of wanting others to be carbon copies of me or my care giving... instead it would be just the oppisite, I have often remarked at how different every situation is and would never presume that it is my way or nothing. I hope you all realize this has not been very easy for me to share my innermost thoughts and feelings but I did believe we could share.

I am aware that this is a subject many shy away from. I do myself. That is the reason I started a new topic so " Pertaining to Brain Donation" would be in big bold letters and only those readers interested would enter.

I must admit that I feel very sad that things I have written were not accepted as I intended.

Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Tue Mar 22, 2011 8:43 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 haven't read anything in this topic thread to make me think anyone has an issue with what your decision was. I do, however, think this is a topic around which there is a lot of tension.
I have seen postings where a person just gets on the forum, is obviously under tremendous stress about theirs or their LOs situation, and almost immediately they are asked about brain donation. (obviously we have a post today from one of those people) That would feel uncaring and innapproprate timing, in the least, to me. Obviously there are others who feel the same way. There are people no longer posting here who've had similar feelings as well. There are people who have made the decision NOT to donate because of feeling pressured.
This should be a caring, informational place, and none of us should feel pressured into brain donation or anything else.
BTW, there was just a statement that it was unfortunate that Kate and her mom hadn't discussed this before. What I had just read a little further up from Kate said "But, Mom very specifically stated in her Medical Directive that she did not want any part of her to be donated." How is that interpretted as a discussion that didn't take place? Her mom wrote that a while ago - how much clearer can that statement be? How many ways can that be interpretted or misinterpretted? I just don't get it. Her mom stated "no donation". If that's not clear, I don't know what is.
I think there should be a topic or a link or something re: brain and other organ donation, and if people are interested, they will go there.
I tried to donate any/all of my mom's organs when she died, but they could not be used because of a malignant melanoma diagnosis. My dad was NOT an organ donor and we all thought he would not have wanted his brain or any other organs donated and none of us was comfortable with it anyway.
It is very personal and private. Lynn

_________________
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.


Tue Mar 22, 2011 9:17 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
LTCVT wrote:
I tried to donate any/all of my mom's organs when she died, but they could not be used because of a malignant melanoma diagnosis.
I did not know that about your mother, Lynn. When Dale made his decision against donation, he based it on his own malignant melanoma. Robin wrote something about melanoma not ruling out donation but Dale felt that he didn't want me having to make the arrangements with that factor involved. He was being kind.

I knew I wanted him to be at home with me at the end. I'm very glad I don't have the burden of making those arrangements right now. Donation from a hospital or hospice might be a different story.

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


Tue Mar 22, 2011 9:33 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, being relatively new here myself I did not know you "back in the day." But I have enjoyed/respected your postings since I've joined.

I read your initial comment as saying you made a decision, you still feel good about the decision, and you are now seeing motivational aspects to that decision that you didn't necessarily see before. Insight into our own behavior can be a very useful thing, and it was kind of you to share that.

Discussion board threads take on a life of their own, and it is not surprising that this one would attract some comments about the decision to donate brain tissue. While there are some strong feelings on this subject, and especially on the subject of if/how/when the topic should be introduced to other people, I don't see anything in this thread to indicate that what you wrote is not accepted. I certainly didn't get the impression that anyone has felt pressured by you on this topic.

Your introduction of this topic inspired some venting. It isn't directed at you. Maybe it is a healthy thing to air our differences. At best it can encourage some sensitivity and tolerance.

_________________
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 9:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pertaining to Brain Donation
No, Dorthea, I don't think the discussion here was either pro or con brain donations. The discussion was about the amount of pressure applied to influence people's decisions even after they have stated they are not interested and the fact that newcomers to the forum were pounced on immediately about brain donation.

_________________
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.


Tue Mar 22, 2011 10:49 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
Thank you Pat. You have stated it much more succinctly than I! 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.


Tue Mar 22, 2011 10:56 pm
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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, please don't take any response as criticism of your decision. I think your post has made some of the rest of us feel like we are in good company as we admit our own concerns or even just that we will not be donating our LO brain.

robin wrote:
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.


Robin, any pathologist that doesn't check the medical directive to be sure he has the permission to take any part of the deceased body for research or to save or improve a life is likely to find himself in deep doodoo. Any "healthcare POA" (we use the term "medical representative") that tries to circumvent Mom's properly executed medical directive is going to find herself facing our very competent attorney, who drew up these documents first for Mom and then for me. And it holds that a medical representative who decides that some part of the medical directive is invalid is calling into question the complete document, which made her medical representative in the first place. I am not a person who would let this pass. Even if it is family, I would be on the phone to the attorney immediately.

Again, thanks Dorthea for being so forthright and courageous in speaking your mind. It helps.

Kate

if the "healthcare POA" or medical representative which is the term used by our attorney,

_________________
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 11:12 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'm sure your mom would be very appreciative of you standing up for her very clear and specific requests. I had to do that for my mom at a very traumatic time, when my dad wanted to ignore her AD (and he was POA). It was very difficult but it felt like the right thing to do. Good for you for trying to implement what she wanted. Lynn

_________________
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.


Tue Mar 22, 2011 11:20 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
What may strike one person as the appropriate time/place for a discussion about brain donation, will not strike the next person as the appropriate time/place. Dr. Ferman says she brings it up the topic in the first interaction with patients. That won't suit everyone. For every person who believes the topic is inappropriate, there are several more who thank the person raising the topic ("I never knew about this. Thank you for the information.").

If someone thinks it's an inappropriate topic at some given time, that person will *never* consider brain donation.

Don't we all ignore topics we find off-putting or ignore the posts of those whose views we don't care to know?


Wed Mar 23, 2011 12:13 am
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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
DrP,
There is great peace of mind in having absolute certainty that Mr. Bobby had LBD and AD -- for you, your children, and even Mr. Bobby's MDs. I look back on some of your old posts and realize that you were speaking as someone who was in fact dealing with LBD. And you came up with the clinical diagnosis yourself!
Robin


Wed Mar 23, 2011 12:19 am
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