Re: 5 Mayo Videos on LBD - Brain Donations - My experience

[Guest guest]

Dear Patti

It is good to read that you are going to discuss with your brother the

possibility of brain donation when your mother dies. I can only say that it

has been a very positive experience for me and I'm sure it will be the same

for you. I am not familiar with the situation in the US but I would be

confident that you will be treated with the same compassion and

understanding as I have been here in Australia. I think we all crave

solutions to this heartbreaking disease and this is one way we can all help

medical scientists to increase understanding of how LBD works.

Elaine

Elaine (61) from Sydney Australia

Carer for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

symptoms began at least 5 years before.

Jim died peacefully in hospital on 12th February 2011.

[Guest guest]

Elaine,

I am sure glad you answered my email. I don't know now what I was asking for

now, when I looked into it. Knowing there could be two difference things might

make a big difference to some of the people here who would like to do the same

thing. Maybe I was asking for the pathology test. I know I was going through

the AD group. But wasn't told there was a difference.

Thanks for the clarification.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

Re: 5 Mayo Videos on LBD - Brain Donations - My

experience

Donna, I was interested in your comment about the cost of brain donation.

I have not paid any money for donating Jim's brain to Neuroscience Research

Australia.

As part of the brain donation I will receive a report in about three months

which will be free of charge.

We were not part of any research program while Jim was alive, though they

have access to all his medical records to assist them in understanding the

progress of his disease.

I think if I had requested an analysis of Jim's brain purely to find out the

cause of death - without the donation of the brain - I would have had to pay

for this like any other pathology test.

By donating the brain, I have given the research institution the brain

tissue for them to use as they see fit. This is a highly valuable resource

for them, hence there is no cost to me.

Elaine

Elaine (61) from Sydney Australia

Carer for husband Jim (82) who was offically diagnosed LBD Oct 2009, but

symptoms began at least 5 years before.

Jim died peacefully in hospital on 12th February 2011.