Re: Don't know what to do??????

[Guest guest]

Hi Sharon G.,

I think that there are several brain banks out there and some

others here may be able to give you additional information. I am

aware of The National Parkinson Foundation/University of Miami Brain

Endowment Bank. 1-. (24/7)

Some things noted on their fact sheet.

1) Legally, the brain autopsy must be requested by the next-of-kin or

guardian if prior arrangements before the demise do not exist.

2)A brain autopsy will not delay or complicate the family's plans for

a funeral , cremation or burial. In additon, a brain autopsy will

not in any way interfere with a family's desire for an open casket

funeral.

3)The brain autopsy should be performed within 12 hours from the time

of death in order to maximize the research value.

4)Cost incurred for transportation (one way) of the deceased from the

location of demise to the designated pathologist, and cost incurred

for brain removal will be absorbed by the UM/NPF Brain Endowment Bank.

5)Funeral expenses remain the responsibility of the family.

6)A neuropathology report of the final diagnosis will be mailed to

the family within 3-5 months.

7)A brain autopsy is the only method by which Alzheimer's disease can

be confirmed and Parkinson's disease and Schizophrenia disorders can

accurately be diagnosed.

8)Verification of a particular diagnosis in individuals allows

researchers to assess the possibility of genetic transmission of

these disorders and can help determine the risk of a relative being

affected by the disease.

Hope this helps with your decision.

Ann in Tennessee

In LBDcaregivers , " Sharon G " <sboumees@p...> wrote:

> We know the end is coming soon for mom and my sister and i are

> talking about donating mom's brain for research. She has always

been

> a person who helped anyone in need. She was a giver not a taker.

> We don't know too much about how to go about this. Does anyone know

> about donating for research?

> I have to admit this somewhat bothers us yet i guess we really want

> to know if this could help in some way.

> Thanks for any input on this.

> Hugs-

> Sharon G.

[Guest guest]

Sharon G, I asked the same question about a year ago and Russ was

his usual wonderful stuff and explained all that happens. I've included it

here for you and others to read.

Courage

..........................................................

Courage, I think you are very brave for asking about this. Also, I think

you are very smart in terms of collecting information ahead of time. So,

I'll do my best to answer your questions w/o being overly graphic.

Typically, the body is transported (via ambulance or the funeral home's

hearse) to the hospital that has agreed to do the procedure, ideally within

12 hours. You should REGISTER your LO for brain-only autopsy with a

hospital willing to do the procedure ahead of time. Also, you should make

sure that people in the nursing home and funeral home have been notified

about who to call & how to act at the time of passing. Upon registration,

most places will send instruction letters to nursing home, funeral home, and

next-of-kin.

LEGAL CONSENT is never given until after the person has passed on. Then,

next-of-kin are able to legally give consent for the procedure. It is

ILLEGAL for anyone to obtain consent for this procedure ahead of time.

Typically, as next of kin, you'd faxed the just signed consent form to the

facility doing the procedure. They must have this consent before they can

do anything.

A " brain-only " autopsy alone is sufficient for making a definitive diagnosis

of LBD.

The body is brought into the morgue, and the back-top of the skull is

removed. The whole brain and part of the spinal cord are removed through

this opening. The empty cavity is then filled with material and the skull

reassembled. Thus, it is possible to have an open-casket wake w/anyone

knowing that the person's brain was removed. The removal of the brain organ

and the reassembling of the skull takes about 20 minutes. Then, the body

can be taken to the funeral home to be prepared for viewing.

No hat is required.

The brain is not returned to the body.

Different institutions have different procedures, but for the most part...

Half of the brain is frozen and half of the brain is sectioned. This is

where it is very helpful for a neuropathologist to have a clinical history

and any brain imaging that has been conducted handy, as it will help him

determine which half to section. He'll want to section the half that is

more likely to have a stroke (or many strokes), as he'll be slicing through

the tissue in order to look for the area of stroke (It looks like a hole in

Swiss cheese, but the tissue around the hole is darkened, as it is dead).

The brain is cut by hand w/a scalpel, similar to how you'd slice an onion.

Each section is 1/2 to 1 cm thick, depending on how difficult the tissue is

to partition. In learning institutions like s Hopkins there are

normally a number of medical students and others surrounding the autopsy

tray. The lead neuropathologist leads the discussion re: what is found,

what certain regions are called (believe me, it's often difficult

[especially in a diseased brain] to identify neuroanatomy on a real brain...

this kind of learning if far different than the " perfect/clean " diagrams

you'll see in neuroanatomy texts), what is normal and abnormal about the

color, texture, appearance of the tissue, etc. Sections are taken of each

brain region and are stored & catalogued for future research. For example,

in my study we were able to go back and re-sequence DNA extracted from this

catalogued tissue, based on new ideas we had about genetic make-up and risk

factors. To have this tissue available to researchers, especially if a

clinical history was collected on the person while alive, is invaluable.

Often the discussion is a series of difficult questions put forth by the

lead neuropathologist, in order to challenge medical students.

Once the macro-examination of the tissue is concluded. Tissue from

different brain regions (especially those involved with memory) are put on

slides, stained with Silver (and Ubiquiten, and/or numerous other agents) so

that the number of Lewy Bodies, plaques, and tangles can be counted. Then

the neuropathologist synthesizes all the findings into a autopsy report and

concludes with a definitive diagnosis. Often the report is four or more

single-spaced typed pages w/very technical writing. However, it is very

useful for research purposes, and people (like me) who are familiar with

brain anatomy.

" My sister has power of attorney and I feel pretty certain that my father

will not agree to an autopsy. Does my sister's power to attorney trump his

refusal for an autopsy? "

Whether a medical power of attorney is binding after death or not, likely

varies from state to state. However, consent is for the procedure is, in

fact, NEVER obtained from the subject of study him/herself. It is assumed

that the LO's next-of-kin will have the LO's best interest at heart once

they have passed. Hence, legal consent is only obtained from next-of-kin

after the time of death. Unless the LO has stipulated in a will that his

body is not to be autopsied, the decision of whether or not his body is, is

left to the next-of-kin. Thus, it's a good idea to have a discussion with

everyone in the family (including your LO), so that everyone is on the same

page.

Here's information I give directly to people in my study to help them decide

if they want to participate in brain donation:

The Predictors of Severity in Alzheimer's Disease study was designed to gain

understanding about the natural course of the disease. Increased

information about Alzheimer's will ultimately lead to improved care of

Alzheimer's patients, as well as the ability to provide patients and

families with a reasonable prediction of the progression of the disease.

Although the clinical information we have gained on our participants is

invaluable, our ability to understand how Alzheimer's disease affects the

brain and causes debilitating memory loss, confusion and eventually death is

dependent upon studying brain tissue.

The following should answer some of your questions about postmortem

examinations. If you have further questions, please contact our research

coordinator, A. , at .

" Why is the donation of brain tissue important? "

The diagnosis of Alzheimer's disease (AD) can only be made with 100%

certainty by examination of brain tissue after death. Many families want to

know for sure what condition affected their relative. This is especially

important when more than one person in the family has suffered from

dementia. For researchers, donation of brain tissue fills an urgent need to

examine brain tissue from deceased patients who were studied closely during

their illness. The study and comparison of clinical and pathological

information is the only way that scientists can gain a better understanding

of how diseases such as AD affect the brain. This type of research may

eventually lead to the treatment and prevention of AD and other dementias.

Therefore, each donation makes an invaluable and significant contribution to

the health of future generations.

" How is the donation of brain tissue made? "

When prior arrangements are made, the body is transferred to s Hopkins

Hospital where it is treated with dignity and respect. With a pathologist

in attendance, the brain is removed at autopsy. No noticeable marks are

left on the body so that an open casket viewing is possible. The tissue is

carefully prepared for examination by the team in the autopsy room and then

the body is returned to the funeral director.

" Does the entire body have to be examined? "

An examination of brain tissue only is sufficient to enable us to make a

diagnosis of AD or another type of dementia.

" When is the autopsy performed? "

To assure that the most important studies can be performed, the autopsy is

best performed within 12 hours of the time of death. Prompt removal of the

brain also assures that there is no delay in the funeral arrangements.

" When and how will the family know the results of the examination? "

Many scientists are involved in

the process of the examination. The tissue is carefully prepared, and

numerous procedures are conducted to look at the structure and chemical

nature of the brain. This study will take several months to complete

because of its complexity. When the results are available, the family will

receive a letter informing them of the results. The investigators of the

Predictors study will be available to answer any questions the family has

about the results.

" Is there any cost involved? "

There is no cost to the family for the autopsy of participants in the

Predictors Study. We will arrange to pay for transportation of the body to

and from Hopkins or the closest hospital. There is no charge for the

removal of the brain, examination of tissue or the diagnosis.

" How do I consent for an autopsy? "

To consent to an autopsy, complete the attached Participant Form by

designating next-of-kin or power of attorney (when available, two names may

be given), the participant's physician, and a funeral director, if you have

chosen one. If the participant lives more than two hours from s

Hopkins, please give us the name of a local hospital that may be contacted

to perform the autopsy. Please return the form in the enclosed stamped

envelope. The indicated parties will be notified and furnished with

appropriate instructions.

" How are arrangements made? "

After completing and returning the Participant Form, the family will

receive a fax or telegram script that allows permission for the autopsy. If

your relative is no longer living at home, the staff of the s Hopkins

Brain Resource Center will inform the nursing home staff of the procedures

to be followed at the time of death.

" How is permission given? "

At the time of death, the designated next-of- kin gives permission by

sending a telegram over the phone, or sending a fax, to the Admitting Office

of the hospital. The next-of-kin will be given the necessary phone numbers

and wording of the telegram to use at the time of death.

Predictors of Severity in

Alzheimer's Disease

Brandt, Ph.D., Principal Investigator

Russ , M.A., Research Coordinator

Munro, Ph.D., Investigator

Iracema Leroi, M.D., Investigator

Ivana Kusevic, B.A., Research Assistant

The s Hopkins University

School of Medicine

Department of Psychiatry and Behavioral Sciences

Division of Medical Psychology

600 North Wolfe Street, Meyer 218

Baltimore, land 21287-7218

Fax

Supported by grant AG07370

from the National Institute on Aging.

Sensitive Questions - Maybe not for everyone

[Guest guest]

Sharon G

Here in the UK I donated my dad's spinal cord and brain to The Brain Bank in

London. It was greatly appreciated by the researchers and also helped me

considerably because I eventually got the definite diagnosis of LBD. In many

ways it was like 'closure' to know for sure exactly what we had been up

against.

I have no idea how the USA system works but surely the doctors or hospital

staff can advise?

Thinking of you

Sally xx

[Guest guest]

Sharon,

We tried to do this when my dad passed. We were late in getting the

process going....and there is quite a process. If you are working

with hospice, they can give you information and possibly direct you

to the right place. If there is a teaching medical university in your

area, they also can provide information. Good luck with

this...unfortunately, we gave up...as dad passed before we could get

things together.

I am thinking about you in this difficult time. Your mom's condition

sounds much the same as Dad's just days before he passed. He also ran

a temperation of well above normal for the last week or so. His

breathing became very rapid and shallow for the last 24 hours or so.

He had stopped taking food, and fluids in the last 72 hours. Someone

mentioned that they believed their LO chose a time...I believe that

Dad also chose his time. I know he is without pain now and I feel the

love he had for me...and probably will for the rest of my life.

Thoughts are with you!

Lynn

> We know the end is coming soon for mom and my sister and i are

> talking about donating mom's brain for research. She has always

been

> a person who helped anyone in need. She was a giver not a taker.

> We don't know too much about how to go about this. Does anyone know

> about donating for research?

> I have to admit this somewhat bothers us yet i guess we really want

> to know if this could help in some way.

> Thanks for any input on this.

> Hugs-

> Sharon G.

[Guest guest]

I would contact your local teaching hospital and ask your doctors. They

should know how to help you.

M

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Don't know what to do??????

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>

>We know the end is coming soon for mom and my sister and i are

>talking about donating mom's brain for research. She has always been

>a person who helped anyone in need. She was a giver not a taker.

>We don't know too much about how to go about this. Does anyone know

>about donating for research?

>I have to admit this somewhat bothers us yet i guess we really want

>to know if this could help in some way.

>Thanks for any input on this.

>Hugs-

>Sharon G.

>

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