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 Brain Donation 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
It's well and good to contribute to Mayo--I'm sure many do. But let us not forget two important facts:
1. LBD is a common but too little-known disorder. It needs as much support and publicity as possible.
2. This is the LBDA forum [which, I might add, has helped in your efforts to secure brain donations for Mayo]. Let's give much-needed credit where it is due! Thank you. :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.


Sat Apr 16, 2011 6:04 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Another important factor when considering donation is also what Organization helped you during your journey, I still donate to the LBDA yearly in my husband's memory because it was the one place that helped me see my way through the illnessof LBD.

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Irene Selak


Sat Apr 16, 2011 8:32 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
As Leone had mentioned in this brain donation thread her friends donating to the Mayo Clinic, I wanted to support that effort. (Perhaps a separate thread can be started about donating to the LBDA.)

I do hope that the LBDA will one day be in a position to fund LBD research and support brain donations.


Sat Apr 16, 2011 11:03 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
Research can help people in the future. Education and support can help people right now. Both are worthy goals, IMHO.

_________________
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.


Sat Apr 16, 2011 11:13 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Brain Donation
I committed donate my brain to Mayo and Dr. Boeve…timing on their part…they asked

I just committed with the 'like' button to support LBDA on facebook a few days back…it was a hard decision…as it strips off more of my old identity

I did both…because I think both are worthy for me

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Apr 16, 2011 11:21 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
Craig,
Thanks for agreeing to donate your brain to Mayo! That combined with your Mayo clinical records and research history will be very powerful! I hope you get to hang on to your brain for a good long time.
Robin


Sun Apr 17, 2011 12:48 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Craig, my husband takes great satisfaction that is brain is going to be used someday (not soon, we hope) to benefit future generations. I hope your decision will give you satisfaction, too. All donated brains serve a good purpose, and those of people in a study, with well documented histories, are especially helpful.

Thank you for your generosity.

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


Sun Apr 17, 2011 12:55 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
mockturtle,
Certainly we all have our own ideas as to worthy causes and organizations. Only Leone can say why she chose to ask her friends and family to donate to the Mayo Clinic to support LBD research (though Dale didn't donate his brain there).
Robin


Sun Apr 17, 2011 1:53 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Brain Donation
robin wrote:
Only Leone can say why she chose to ask her friends and family to donate to the Mayo Clinic to support LBD research
The reason is simply that I don't know if Dale actually suffered from LBD. His case seems unusual in many ways. He was a sleep-walker from his 20s and his downturn was spectacularly swift.

I think research is badly needed. It would be good to know why so many suspected cases of LBD turn out to be something else upon autopsy. It seems to me that doctors who refuse to identify the illness specifically do so with good reason.

By saying that, I don't mean that support of LBDA is not needed. Giving to Habitat for Humanity does not preclude giving to the Salvation Army. There are many worthy causes.

P.S. In addition, Dale's late son (44) was bipolar. He died in prison two years ago. The son's daughter (10) is autistic. Are these conditions related to Dale's mysterious illness?

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


Last edited by Leone on Sun Apr 17, 2011 7:24 pm, edited 1 time in total.



Sun Apr 17, 2011 7:07 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Brain Donation
Yes, I hope to wear it out before turning it in…

good causes are definitely an individual choice….many good ones

I am looking at my donation as something that could possibly help others…and if there is genetics involved…especially my children and theirs

I am looking at my donation as price of admission….for the research….to be complete…I am ready…eager…to start on this journey…but, hope it lasts far longer than any can imagine…

Lewy has been 'the' factor in my life for a long time…affecting everything….since it will grow in importance….I want the full immersion…whole body experience…

this is how I have tried to live my life….winning…so I will try to win this….it might be decided in a textbook, a petri dish, or a glass slide…this will be physical non memory treasure I leave to my children…

this is not how I envisioned the end of my life….but, I embrace it….I know my final physical act on earth…I have chosen it...

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Apr 17, 2011 6:04 pm
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Joined: Sun Apr 25, 2010 8:24 pm
Posts: 5
Location: Michigan and Indiana
Post Re: Brain Donation
My dad passed away on April 7, 2011 after several years of suffering with LBD. With Robin's help, we had all the arrangements in place for the brain donation to Mayo Jax. I am so glad we had that set up before his death. We did still run in to one last minute snags, but Robin was very helpful in sorting that out. If you are considering this at all, it was really helpful to have it set up ahead of time. I did occasionally check on the arrangments but in retrospeck I would recommmend revisiting the arrangements every 3 months.


Fri Apr 22, 2011 12:05 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
Kay,
My condolences again on your dear father's passing. Thank you for donating his brain to medical research. It will help us all.
Best wishes,
Robin


Fri Apr 22, 2011 1:11 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Kay,
Please except my condolences on your loss of your father,I am glad that the gift process was prepared in advance and I am sure it made things go as planned, I also thank you !

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Irene Selak


Fri Apr 22, 2011 4:08 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
One of the LBDA SAC members diagnosed a gentleman with DLB a few years ago. The gentleman died about 6 weeks ago. The family has received the neuropathology report -- not a single Lewy body found in the brain. The gentleman had Alzheimer's Disease. So even DLB experts can get the diagnosis wrong.

The gentleman's treatment wouldn't have been any different. But the family is actually relieved to know it was AD, not DLB, because there's lots more research $ being poured into AD.


Wed May 04, 2011 4:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
That's interesting, Robin. Do you know if the gentleman had any/many PD-type symptoms?

_________________
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.


Wed May 04, 2011 7:44 pm
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