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 Brain Donation 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
In another thread, mockturtle asked:

Robin, I understand you make brain donation arrangements for Mayo. Would you mind telling us if you are compensated for this, or is it purely voluntary. Thank you.


My reply:

I receive no compensation from Mayo Jax, Mayo Rochester, any other brain bank (I do occasionally recommend others, depending on circumstances), pathologists, funeral homes or families. It's strictly unpaid volunteer work (about 20 hours/week). I've helped well over 100 families make the arrangements. I'm very close to having 100 brains donated through my efforts. I think this is important work, and one person can make a difference.


Fri Mar 18, 2011 2:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
Thank you for clarifying that, Robin, and my hat is off to you for your tireless efforts. Thank you on behalf of all of us whose LOs still suffer from this horrible disease. Hope the question was not inappropriate.

_________________
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 Mar 18, 2011 2:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
In the interest of full disclosure... I will say that some very generous families have made charitable contributions in appreciation of my efforts to Mayo Jax, LBDA, or other charities. And a few kind families have sent me thank-you gifts, including books on my Amazon wishlist for the local support group. Charitable contributions or books/gifts are not expected but are always appreciated.


Fri Mar 18, 2011 2:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
I didn't mind the question at all. Many families do ask what I expect to be compensated for my time. Because of that, I've been saying "I do this on a volunteer basis." I don't know if it's clear that volunteers are unpaid.


Fri Mar 18, 2011 2:28 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: Brain Donation
I positively could not have gone through the donation process without Robin walking with me and holding my hand [though two thousand miles away]. Purely on a voluntary basis with no reward expected, in fact she made me feel like I was doing it for her instead of the other way around. She became "family" and I will be forever in awe of the way she works. Dorthea

_________________
"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.


Fri Mar 18, 2011 4:18 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Pat,
I don't think your question was inappropriate at all, I think we live in a society that many people think that most people are paid for their services, but I can tell you personally that when you commit yourself to a certain thing such as LBD or any other thing that is near and dear to your heart you just do what you feel will help others and I am sure all of volunteers have their own reasons, Robin is able to do something I can't and it does help many familes when they choose Brain donation is the way they want to go, For that I am thankful.

I can't tell you how many times familes have asked me if I get paid for what I do, and I of course like Robin, I don't and I have had families make sizable donations in my name for their LO. I wish I could say that I spend 20 hours a week on my volunteering but when I get involved with a family in need its hard to break away.

I had a gal call the helpline sometime ago requesting a call after 8:30 PM , well for me that is 11:30 EST, I was all set to make the call and say we need to set something up for the next day and it turned out the woman was in a crisis, How do you not help someone like that ?

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Irene Selak


Fri Mar 18, 2011 6:12 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
Irene, you have been a blessing to us all. Thank you for all you do! :P

_________________
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 Mar 18, 2011 6:26 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Brain Donation
Irene and Robin both, and no doubt many other volunteers I don't know about. I am so grateful!

Julianne


Fri Mar 18, 2011 7:51 pm
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Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Getting back to the topic of 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 5:28 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Brain Donation
Although Dale changed his mind about having his own brain donated, I have requested that those who wanted to give a gift in memory of Dale contribute to the Mayo Clinic research on Lewy Body Disease. I was very pleased to receive a very nice letter from Mayo thanking me for that suggestion and the funds that have been donated.

What Robin has committed herself to doing with regard to LBD is extremely valuable. We need answers and so brain donation is essential. I am grateful that she has been faithful to this task and I applaud her. Let's continue to support her efforts.

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


Thu Apr 14, 2011 8:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
And contributions to the LBDA would be nice, too! :P

_________________
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.


Thu Apr 14, 2011 8:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: Brain Donation
That was what I requested in my dad's obit - donating $ to LBDA. It's also important to put charitable causes in our own wills, which we recently did. 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.


Thu Apr 14, 2011 8:56 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Lynn,
On behalf of the LBDA I thank you for the request !

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Irene Selak


Thu Apr 14, 2011 9:19 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: Brain Donation
Leone,
Thank you for your support! Many people here thought it inappropriate that I ask you about Dale's brain donation when he was in his final days. Perhaps your response will be eye-opening for them. It is eye-opening to me; obviously you were fully-focused on your love for Dale and providing him the most peaceful exit possible.
Thanks,
Robin


Fri Apr 15, 2011 9:04 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Leone,
I think contributing to Mayo is wonderful, whether it be a donation earmarked for their brain bank (to support brain research made possible through brain donation), earmarked for DLB research, or a general donation to fund all of their research activities. Many in our local support group prefer to donate to the Mayo Clinic rather than an organization focused on a specific disorder. Or they may wait until they receive the neuropathology report and then donate to the organization focused on the disorder that their family member had.
Robin


Sat Apr 16, 2011 5:34 pm
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