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

[Guest guest]

I would encourage you to watch the video from the Mayo Clinic on the Role of

Autopsy.

It is exciting to hear what progress has been achieved by the study of

different brain tissue donations.

I would also encourage you to think about being involved in brain donation.

I donated Jim's brain to Neuroscience Research Australia (NeuRA) which is

linked to the University of New South Wales and the Prince of Wales Hospital

here in Sydney. My experience with this has been a very positive one.

By the time I found out about the possibility of brain donation, Jim was not

in a position to make a decision or discuss this.

Thankfully his agreement was not necessary. However they encouraged me to

discuss the donation with family members.

Our son's comment was " Dad is not going to need it and if it can help

others, why not? "

After I had filled in the application and been accepted into the programme,

I was given clear instructions about the steps to follow when Jim died.

Basically this involved acting as promptly as possible after death - though

we still had time as a family to spend time with Jim and to be involved in

the preparation of his body. At no time did we feel under any pressure. I

had to make two phone calls - one to a 24-hour phone number to speak to the

brain donor coordinator and another to the funeral director. It then became

the role of the funeral director to get the process going.

I had previously contacted the funeral director (when it became clear that

Jim's health was deteriorating) and discussed the brain donation procedure

with them. They were familiar with the NeuRA research program and with the

process involved.

When Jim was admitted to hospital, I gave the staff a copy of the procedure

to be followed on his death, just in case I was not available to make those

phone calls. I printed the instructions on bright yellow paper so they could

be easily found in his medical/clinical file.

When Jim died, all I had to do was make the two phone calls. The hospital

and the funeral director coordinated the transfer of Jim's body to Westmead

Hospital, another hospital in Sydney, which has the equipment to remove the

brain. The funeral director kindly kept me in the loop about what was

happening - when Jim's body had arrived at Westmead Hospital and when it had

arrived safely back at the funeral home.

The donation of the brain does not disfigure the body in any way and it is

still possible, if you wish, to view the body in the usual way.

I had several questionnaires to complete for the researchers and I also

provided them with all the information I had collected over the course of

Jim's illness - such as CT Scan reports, reports from specialists and

doctors, blood test results, and my own daily observations that I had kept,

where possible, in diary form including blood pressure readings. I had also

taken photos of his Lewy Lean. They found this extra material of great help.

As yet I do not have the autopsy report - that will take at least 3 months.

Although I am curious to discover what diagnosis they give, this is not my

main focus. I feel so pleased that Jim's disease and suffering will not be

in vain. It is a wonderful feeling to know that he is contributing in this

significant way to helping learn more about LBD and to discovering improved

treatments and the potential for a cure.

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 -

Thank you again for donating Jim's brain upon his death. Brain donation is an

act of tremendous generosity. His donation will help many people.

I find it fascinating that you aren't focused on knowing the confirmed

diagnosis. With a lot of the families I've worked with, the spouse is less

interested in the confirmed diagnosis as compared to the adult children.

Hope all's well,

Robin

>

> I would encourage you to watch the video from the Mayo Clinic on the Role of

Autopsy.

>

> It is exciting to hear what progress has been achieved by the study of

different brain tissue donations.

>

> I would also encourage you to think about being involved in brain donation.

>

> I donated Jim's brain to Neuroscience Research Australia (NeuRA) which is

linked to the University of New South Wales and the Prince of Wales Hospital

here in Sydney. My experience with this has been a very positive one.

>

....

[Guest guest]

Elaine,

 

What an amazing thing you did in order for meuroscientists/LB researchers to

continue to do research into this terrible disease and how fortunate you were to

have the support of your family.  I commend you, and I will consider discussing

this possibility with my brother regarding our Mother who has been in a care

center with LBD since early Nov. 2009.

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

experience

To: LBDcaregivers

Date: Wednesday, March 23, 2011, 5:40 AM

 

I would encourage you to watch the video from the Mayo Clinic on the Role of

Autopsy.

It is exciting to hear what progress has been achieved by the study of

different brain tissue donations.

I would also encourage you to think about being involved in brain donation.

I donated Jim's brain to Neuroscience Research Australia (NeuRA) which is

linked to the University of New South Wales and the Prince of Wales Hospital

here in Sydney. My experience with this has been a very positive one.

By the time I found out about the possibility of brain donation, Jim was not

in a position to make a decision or discuss this.

Thankfully his agreement was not necessary. However they encouraged me to

discuss the donation with family members.

Our son's comment was " Dad is not going to need it and if it can help

others, why not? "

After I had filled in the application and been accepted into the programme,

I was given clear instructions about the steps to follow when Jim died.

Basically this involved acting as promptly as possible after death - though

we still had time as a family to spend time with Jim and to be involved in

the preparation of his body. At no time did we feel under any pressure. I

had to make two phone calls - one to a 24-hour phone number to speak to the

brain donor coordinator and another to the funeral director. It then became

the role of the funeral director to get the process going.

I had previously contacted the funeral director (when it became clear that

Jim's health was deteriorating) and discussed the brain donation procedure

with them. They were familiar with the NeuRA research program and with the

process involved.

When Jim was admitted to hospital, I gave the staff a copy of the procedure

to be followed on his death, just in case I was not available to make those

phone calls. I printed the instructions on bright yellow paper so they could

be easily found in his medical/clinical file.

When Jim died, all I had to do was make the two phone calls. The hospital

and the funeral director coordinated the transfer of Jim's body to Westmead

Hospital, another hospital in Sydney, which has the equipment to remove the

brain. The funeral director kindly kept me in the loop about what was

happening - when Jim's body had arrived at Westmead Hospital and when it had

arrived safely back at the funeral home.

The donation of the brain does not disfigure the body in any way and it is

still possible, if you wish, to view the body in the usual way.

I had several questionnaires to complete for the researchers and I also

provided them with all the information I had collected over the course of

Jim's illness - such as CT Scan reports, reports from specialists and

doctors, blood test results, and my own daily observations that I had kept,

where possible, in diary form including blood pressure readings. I had also

taken photos of his Lewy Lean. They found this extra material of great help.

As yet I do not have the autopsy report - that will take at least 3 months.

Although I am curious to discover what diagnosis they give, this is not my

main focus. I feel so pleased that Jim's disease and suffering will not be

in vain. It is a wonderful feeling to know that he is contributing in this

significant way to helping learn more about LBD and to discovering improved

treatments and the potential for a cure.

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]

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,

It sounds like you had it done for free? I know when I checked into it for Mom,

it was a considerable amount of money here in the US, unless you were in some

kind of research program. And she wasn't.

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

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]

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.

[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.