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

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.

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 !

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.

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 !

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.