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 Brain Donation 
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Brain Donation
Received Mayo Clinic, Jacksonville, report on my husband's brain:

"As expected, he had diffuse Lewy body disease which is the most common cause of Parkinson's disease and Lewy body dementia. He also had the aging changes of the Alzheimer's type, but insufficient to diagnose Alzheimer's disease."

Again, I want to thank Robin--it would never have occurred to me to think donation. It is such a positive thing for me. The diagnosis confirmation is good, but the donation was not about that, it's about part of him still out there helping people. I do hope most of you will consider this avenue when your LO's time comes.

Gail


Fri Oct 14, 2011 12:26 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Gail, thank you for sharing that.

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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


Fri Oct 14, 2011 12:35 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
Gail,

Thanks for the info from the report. As you probably know, LBD commonly co-occurs with Alzheimer's, so your husband had "classic Lewy Body Dementia."

It's wonderful that you feel so positive about the sheer act of donating such precious tissue. Charlie definitely lives on to help others.

Robin


Fri Oct 14, 2011 12:49 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Brain Donation
Gail, and Charlie,

Thanks for your donation.

Thanks in a very personal way.

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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


Fri Oct 14, 2011 11:12 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Brain Donation
Gail, thank you so much both for your (and Charlie's) generosity in participating in this research, and in telling us what you've learned.
Speaking as a researcher using post-mortem data in our studies, I want to tell you how very helpful this is - bit by bit, with every person who helps, we are learning how better to match up what we see in people clinically during their lives with the definitive information from the autopsy. And we hope, with better imaging techniques, someday (soon?) to be able to track not only what the disease is doing, but also whether different treatments have an impact on the brain itself. You and Charlie are a part of this effort - making a difference for the future.
Take care and thank you again -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Oct 14, 2011 11:35 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
Good to know that this can be done. My mother has requested repeatedly that my sister and I arrange this for when she dies. It is wonderful to know that there are people who know how to do it when the time comes.

Liz


Sat Oct 15, 2011 12:11 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Liz, it is best to make some arrangements earlier, long before time of death.

It is a great comfort to my husband to know that he is making this contribution. When we go out of town he always reminds me to "bring the paperwork" so if he dies away from home this can still happen.

Since your mother feels strongly about this, too, I'm sure she would appreciate knowing that it is all arranged.

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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


Sat Oct 15, 2011 2:58 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Brain Donation
Liz, Frank and I filled out the forms a few years ago. When it "seemed" like he was going down hill fast, I called our funeral home and she was very familiar with the brain bank we signed up with and told me what I needed to do when the time came.

It's a wonderful gift, and for us, I want our children and grandchildren to know their family history and what disease their father/grandfather suffered with for so many years.

I hope you and your family follow through with your mom's wishes.

Take Care, Gerry

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


Sat Oct 15, 2011 7:20 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
Liz,

Wonderful that your mother wants to donate her brain!

If you are interested in donating your mother's brain to the Mayo Clinic, let me know. I volunteer to help people make these arrangements. Over 120 brains have been donated (mostly to Mayo) due to my efforts.

These arrangements need to be made in advance of death. As a general rule, I no longer assist people after their family member has died. There's too much stress to get involved at that point.

Robin


Sat Oct 15, 2011 11:34 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Robin,
How far in advance do you think people should make arrangements and also the same question as the person nears the end do they have to set this up? I think that would be helpful information .

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Irene Selak


Sat Oct 15, 2011 9:09 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 think the best case is that the arrangements are made years before death, and the person with the neurodegenerative condition is involved in the discussion and makes the decision to donate his/her brain. Many people have great pride in the fact that they are donating their brains upon death. If arrangements are made this far in advance, it's a good idea to review the arrangements periodically. And certainly review them when the person is placed on hospice or enters a hospital.

When someone calls me for assistance, I greatly prefer that their family member not be on his/her death bed -- hours or days from dying. It's best to make the arrangements months ahead of time.

One good reminder is as soon as someone is placed on hospice, that would be a good time to make the arrangements. Another red flag is as soon as a person goes to the hospital; that would be a good time to make the arrangements. Again, hopefully the person is not on his/her death bed.

In September, four people died and donated their brains in cases where I made the arrangements. Of the four, one family had made the arrangements 11 months ahead of time; 11 months ago there was no urgent need to make the arrangements -- the family member simply wanted peace of mind. One family made the arrangements 3 months ahead of time; 3 months ago was a real rush because the hospital advised the family that the person was not expected to recover from pneumonia. One family made the arrangements 2 months ahead of time; 2 months ago hospice told the family that the person could go any minute.

And one family made the arrangements less than 12 hours before the lady died. The lady died the day after the family called me. Fortunately I could drop everything else in my life the day before the lady died, and devote 8 hours to phone calls and emails. In that case, I knew the lady as I had exchanged many emails with her in the past. I knew she wanted to donate her brain and her body; she was a retired nurse and very focused on helping others. Charity and generosity were what her life were about. She had been in the hospital with pneumonia for the preceding two weeks. It seemed that she was hanging on for some reason, not letting go. I asked the family if perhaps she was hanging on because she wanted to know that the donation arrangements had been made. At that point, they asked me to make the arrangements. Once I finalized the arrangements, I told the family to give the lady a message from me -- "Your online friend Robin has made the arrangements for the brain and body donation. Don't worry about anything." She died the next morning.

In the three cases where the arrangements were made 2 months, 3 months, and 12 hours ahead of time, there was absolutely no reason why those arrangements couldn't have been made 6 months or 12 months ahead of time. To me, "not wanting to talk about death" is not a good reason. Don't we all know we're going to die?


Sat Oct 15, 2011 9:36 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Brain Donation
When my husband got pneumonia and I decided not to treat, it was obvious that he would last only days and I got in touch with Robin, who actually was busy with other stuff, but found time to get the info I needed. I had known from the beginning of joining this forum that I would choose this, but didn't take any action to do so. Why? Not sure, just didn't seem time to make any kind of final arrangements for anything. But then the pneumonia came (the "dementia patient's friend") and every thing needed to be arranged within less than a week.


Sat Oct 15, 2011 10:37 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 743
Location: LA
Post Re: Brain Donation
Gail, I don't know how you did it... yes, I do, we do what we have to. I know it was hard.

My husband [age 91] also died from pneumonia and even though I allowed treatment, it did no good because he was so ready. I had made arrangements eight months before for his passing to be at our home but I found us in the hospital and the end approaching. I contacted Robin giving her the name and phone number of the Hospital Patient Advocate who worked with us. They did the rest as I stood quietly by, as if in a dream. Thank you Gail [and Charlie], our numbers are growing.

Robin is so dedicated, she keeps on going and going and going... amazing!

Dorthea


Sun Oct 16, 2011 12:20 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Robin,
Thanks for the time frame and I agree Death is something that should be talked about but many people can't , so having a time to make these arrangements helps others that might be thinking about this for their LO!

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Irene Selak


Sun Oct 16, 2011 9:47 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
I greatly doubt that reading about the suggested time frame will have an effect on behavior. In the years that I've been doing this, the only thing that seems to make a difference in whether months-in-advance arrangements are made is my having a relationship with the family (or donor).


Sun Oct 16, 2011 4:16 pm
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