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 Brain Donation Information 
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Brain Donation Information
http://www.lbda.org/feature/1949/brain- ... ations.htm

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Irene Selak


Sun Apr 17, 2011 4:22 pm
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Joined: Tue Oct 25, 2011 2:57 pm
Posts: 9
Post Re: Brain Donation Information
Please send info for brain donation in the Houston, Tx area. My husband is getting worse and I want to be sure all is done so nobody else has to go through what he has gone through. This is the only way he can help and I will continue to try to educate others about LBD. Thanks


Thu Dec 06, 2012 5:33 am
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Brain Donation Information
Trugie, I so agree. I will do my level best to make sure it happens when Ted's time comes. We are going through a tough time now again. He's lost more swallowing function and is aspirating--it's breaking my heart to see what it's done and it's not finished yet. My only solace is that I can still hold him for now.


Thu Dec 06, 2012 10:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation Information
Ladies,
That is why I posted the link above, you have to do your homework to find out where you can get one done, I can't just pull that information out, read through the link and see where you can start your research! Often medical teaching Universities are a good place to start !

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Irene Selak


Sun Dec 09, 2012 8:59 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Brain Donation Information
Don't worry, Irene. I think we're as set as we can be. I had originally signed the consent paperwork last year when they first told us to go on hospice at Mayo clinic. Then, Mayo clinic worked with me to find a pathologist near where Ted is now placed and we've given the funeral home a copy of the consent and discussed with them. I also have had a discussion with the social worker at the nursing home and with the care plan group. The social worker knows how important this is to us (actually, everyone does) I hope I have everything in place. The worst part is chasing paperwork, but I'll continue to do my best to make sure it happens when the time comes. I believe we're getting much closer, which is what I meant. It's just so hard no matter what, but so important.


Mon Dec 10, 2012 7:04 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation Information
Jean,
I am glad your set, I feel bad as not to help others in this way but honestly I don't have that kind of info I just have what the LBDA supplies me, after doing this for many yrs I often find some people just want some one else to do the look ups and there just isn't enough time to do them all, I have some lists but not many, I know there isn't much research going on right now either not for LBD. Thanks for letting me know !

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Irene Selak


Mon Dec 10, 2012 11:20 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation Information
I have made an arrangement with a neuropathologist in Seattle for a brain autopsy on my husband when he dies but it will only be used for research 'if the pathology is interesting'. Even so, knowing the true pathology might be worthwhile. It was my feeling that, as a scientist, he might want his brain to go to research but when we discussed it several years ago, he said he didn't care one way or the other.

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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.


Mon Dec 10, 2012 12:12 pm
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