SharonN,
Thanks for the update. Good for you that you got it all worked out! It sounds like a great plan -- one that meets your husband's and your key goals of furthering research and knowledge about LBD or whatever neurodegenerative disease your husband is found to have. How satisfied you must be after six weeks of hard work, and it's finally come together so beautifully. I like your thoughts about putting the "death planning" aside now that it's complete and focusing on the living. I hope your husband has much living left to do!
Best wishes,
Robin

Robin,
Thank you! Without you letting me know about contacts, it would have been much more difficult. You do a lot of contact work for people needing answers and direction. I would hope someday the process would be much easier. I have left copies of the Mayo Jax and MedCure information with my doctor who works with many nursing homes. He was interested so he had the information if someone else wanted to do the same.

I am anxious to get on with the living and I too hope we have lots of time. Thank you again. I will let you know the results when I get them.
Sharon

Here is a website, I'm sure someone else has listed it, that gives brain donation places, state by state...for the USA:
http://www.ninds.nih.gov/research/parki ... nbanks.htm
It's good to contact different places way beforehand to find out what the criteria is. Different places have different needs. The place I chose, Columbia Presbyterian, wanted my husband to come in to be evaluated. It was really going to be a complete waste of time, but not harmful and I was going to do it, but he got sick and eventually died. Luckily, if I can use that word, he had been evaluated at their memory clinic many many years ago, and they used that and were able to accept his brain.
By the way, there was absolutely NO cost involved. They even paid for the funeral parlor's transportation to and from their location.
At the time of death, it was a little complicated to arrange, but it all went smoothly. I also had contacted the funeral parlor ahead of time about this so they were able to take his body immediately to the facility.
In the process of getting all this done, I decided to donate my brain too to them. Hopefully it will be a non-dementia brain that they can use as a control study. But who knows what time will bring.

Hi Iffy,

That URL has been posted before but there's no harm in re-posting it.

I'm not sure I knew that your husband had passed away. Did you post about it? If I missed it, let me express my condolences now.

It's good you had made most of the arrangements in advance, and that your husband had been seen previously there. Thanks for following through with your husband's brain donation. Have you received the results yet?

You posted under the topic of "body donation." Did you also donate your husband's body to science?

I know many such as yourself who have signed up for brain donation, in support of their loved ones. It's wonderful!

Unfortunately, many brain banks have been cutting back with these tough economic times (and even before). The brain bank affiliated with UCLA no longer accepts brain. John Hopkins wouldn't accept the brain of a member here. Mayo Rochester no longer accepts brains of those with particular diagnoses. Duke no longer runs a brain bank. Bad times.

Robin

I find it almost, just almost, amusing, that research facilities are rejecting brain donations. How will they do their research without them?
I didn't donate his body...woops, posted in the wrong topic.
And yes, I guess I didn't mention that Wil passed away in May after a sudden illness weakened him. Thanks for thinking of us.

That's just the problem....less and less research is being done because there's no money available for it!

To anyone interested in body donation....

I've been helping a local support group member investigate the same path that SharonN took -- brain donation to Mayo Jax, and body donation to MedCure. Just today I received word from MedCure that they will no longer accept bodies for donation if the brain (or any other tissue) has been removed by another organization/researcher.

It is most unfortunate when there are such generous families out there that these donations are not accepted.