Re: Brain Donation to Mayo Jax

[Guest guest]

To those who are interested, this was our experience with the brain donation. 

My husband's family is in a DNA study with the University of Indiana, and part

of that study is the retrieval and autopsy of brain tissue at no charge.  I

understand Mayo's does the same, and they do provide a faster report.  I had

asked for as quick a report as possible and did get it within three months.  The

University would have or did pay for the transportation there.

As Robin has said, you need to contact the funeral home that you will be using. 

Generally, they will transport the body to the retrieval place.  We used the

local coroner, and the tissue was shipped to the U of Indiana as quickly as

possible by them.  The funeral home then transported the body back to the

mortuary.  You will also need to have all the paperwork with the facility doing

the autopsy in place before anything happens.

I had a full-body autopsy done, as I wanted to know the actual cause of death  I

had some concerns, which is a long story of its own.  That cost was $800, which

I did pay for myself, but it answered a lot of questions, and I am very glad

that it was done. I do wish I would have had them test intestinal tissue as

well, as there is some indication that Lewy Body may begin in the " gut. "

 

There was absolutely no indication that the autopsy had been done in case anyone

is concerned about viewing the person.  I am glad to hear that you are

considering this, as this is the only way we are ever going to be able to find

out causes and/or possible treatment for this horrible disease.  I know this is

a very sensitive issue for a lot of people, but in our case, there is an

extremely high rate of dementia in my husband's family, and I have 4 children

and 24 great/grandchildren, so I feel very stronly about getting to the bottom

of the disease.

June C.

 

________________________________

To: LBDcaregivers

Sent: Wednesday, November 12, 2008 10:58:10 PM

Subject: Re: Brain Donation to Mayo Jax

Kat in IL and Dorene,

Thanks to your loved ones for their willingness to donate brain

tissue, and to you for making these arrangements now.

If you have the resources (cost* is usually $500 but can be as high

as $1500), I highly recommend donating tissue to Mayo Jax. The main

reason is that you'll get the neuropathology report in less than 6

weeks post-mortem. (Some receive their reports as soon as 3 weeks

post-mortem. The neuropathology report and analysis are free.) This

is unheard of in the brain donation world. Most places take a year!

Further, many of the key clinicians in the LBD world are at Mayo

facilities. So I'm confident that when the key clinical-pathologic al

research is done, it will be done utilizing tissue at Mayo Jax.

There are already many LBD and LBD/AD brains at Mayo.

The big disadvantage in donating to Mayo Jax is that the family has

to do the legwork to find someone to handle the tissue procurement. I

can possibly help you with this. I just helped three families in the

last 10 days make these arrangements -- Raleigh, NC; ville,

NC; and Kansas City, MO. Two of these three have just died, and

everything went fine for the brain donation. Please email me

privately about this. Unfortunately the brain bank coordinator at

Mayo Jax has been out of the office for the last several weeks so

I've been making lots of blind calls into hospitals and autopsy

service providers (but with success).

What you need to do right away is contact the funeral home to be sure

that they support brain donation. Tissue procurement must occur

within 24 hours of death -- 12 hours is best. Most funeral homes are

OK with this, but not all. While you are at it, ask the funeral home

if they have any local contacts for tissue procurement. (This is

done by a pathologist, certified pathology assistant, or experienced

individuals. )

You can also inquire with your family member's neurologist about

this. Very rarely do I find that any MD knows someone for tissue

procurement, and few have been involved in brain donation before.

Harvard's Brain Bank is no cost. I don't recommend people donate

tissue there because (a) they don't do any LBD research, and ( it

takes a long time to get the autopsy report.

Good luck,

Robin

* Very rarely it's free. I helped an LBD family in FL get this

service for free but that's the first time in a year of supporting

brain donation on a national basis (outside the local support group)

that this has happened.

>

> I have this question also, as Mom and I discussed this in a

somewhat lucid moment last week.  She wants the Dr to open her brain

now and find out what is going on.  I told her that can't happen

until after her death.  She wants to donate and try to help others.

>

> Kat in IL, caregiver to Mom, Jane, 86, brainstem stroke survivor

2/06, dx LBD 3/08

>

> ____________ _________ _________ __

> From: dunnlease <dmolise@... >

> To: LBDcaregivers@ yahoogroups. com

> Sent: Wednesday, November 12, 2008 1:20:00 PM

> Subject: Brain Donation

>

>

> Hello All:

>

> Some time ago there was a post about brain donations for research.

If I recall corrected the donation when to the Mayo Clinic. My Dad

and I are in the process of finding the best way to have my Mom's

brain used for research after her death, as is her wish.

>

> Does anyone remember how it worked? I have been in contact with the

> Harvard Brain Bank, but I am wondering if the Mayo Clinic might be

> better. Is anyone doing study on LBD specifically?

>

> Thanks in advance.

>

> Take care,

> Dorene

>

>

[Guest guest]

In addition to donating brain tissue, one very clever person I

recently worked with had CSF (cerebrospinal fluid) collected. So if

there turn out to be tests later on where living people can have CSF

tested to see if they have a certain amount of alpha-synuclein

protein, for example, to diagnose LBD, there will be some CSF around

for at least one gentleman with path-confirmed LBD.

Like June, I also support the idea of full body autopsy. Children

can learn a great deal about what they are inheriting. We had no

idea my dad had severe heart disease until the post-mortem exam. Now

I know I have to be especially cautious with cholesterol intake and

get the C-Reactive Protein test (rather than the standard cholestoral

test).

I know of others who want to have a toxicology exam for their loved

ones post-mortem.

FYI - in our local support group, not everyone clinically diagnosed

with LBD ends up having path-confirmed LBD! You'd be amazed...

> >

> > I have this question also, as Mom and I discussed this in a

> somewhat lucid moment last week.  She wants the Dr to open her

brain

> now and find out what is going on.  I told her that can't happen

> until after her death.  She wants to donate and try to help others.

> >

> > Kat in IL, caregiver to Mom, Jane, 86, brainstem stroke survivor

> 2/06, dx LBD 3/08

> >

> > ____________ _________ _________ __

> > From: dunnlease <dmolise@ >

> > To: LBDcaregivers@ yahoogroups. com

> > Sent: Wednesday, November 12, 2008 1:20:00 PM

> > Subject: Brain Donation

> >

> >

> > Hello All:

> >

> > Some time ago there was a post about brain donations for

research.

> If I recall corrected the donation when to the Mayo Clinic. My Dad

> and I are in the process of finding the best way to have my Mom's

> brain used for research after her death, as is her wish.

> >

> > Does anyone remember how it worked? I have been in contact with

the

> > Harvard Brain Bank, but I am wondering if the Mayo Clinic might

be

> > better. Is anyone doing study on LBD specifically?

> >

> > Thanks in advance.

> >

> > Take care,

> > Dorene

> >

> >

>

>

>

>

>

>

>

[Guest guest]

We also had the toxicology report, mainly because of all the meds he was given,

but the only thing that showed was the morphine that he was given for the last

several days.  The other meds had left the system by then, I guess.  I still

believe he may have had NMS, which might have accounted for his extremely high

WBC (26,000), but the hospital denied that; however, they couldn't come up with

a reason for that high WBC.

The body autopsy showed amyledosis in the heart muscle, which we would never

have suspected.  From what I understand, there is a connection with that and

AD.  They called the COD acute pneumonia, but the hospital said he didn't have

that less than a week before.

I had been after them for weeks for giving him Seroquel  and Ativan, but they

wouldn't stop.  However, after I mentioned NMS to the doctor and he denied it,

when they sent him back to the NH, there were orders not to give him either of

those.  Strange????

________________________________

To: LBDcaregivers

Sent: Thursday, November 13, 2008 9:45:40 PM

Subject: Re: Brain Donation to Mayo Jax

In addition to donating brain tissue, one very clever person I

recently worked with had CSF (cerebrospinal fluid) collected. So if

there turn out to be tests later on where living people can have CSF

tested to see if they have a certain amount of alpha-synuclein

protein, for example, to diagnose LBD, there will be some CSF around

for at least one gentleman with path-confirmed LBD.

Like June, I also support the idea of full body autopsy. Children

can learn a great deal about what they are inheriting. We had no

idea my dad had severe heart disease until the post-mortem exam. Now

I know I have to be especially cautious with cholesterol intake and

get the C-Reactive Protein test (rather than the standard cholestoral

test).

I know of others who want to have a toxicology exam for their loved

ones post-mortem.

FYI - in our local support group, not everyone clinically diagnosed

with LBD ends up having path-confirmed LBD! You'd be amazed...

> >

> > I have this question also, as Mom and I discussed this in a

> somewhat lucid moment last week.  She wants the Dr to open her

brain

> now and find out what is going on.  I told her that can't happen

> until after her death.  She wants to donate and try to help others.

> >

> > Kat in IL, caregiver to Mom, Jane, 86, brainstem stroke survivor

> 2/06, dx LBD 3/08

> >

> > ____________ _________ _________ __

> > From: dunnlease <dmolise@ >

> > To: LBDcaregivers@ yahoogroups. com

> > Sent: Wednesday, November 12, 2008 1:20:00 PM

> > Subject: Brain Donation

> >

> >

> > Hello All:

> >

> > Some time ago there was a post about brain donations for

research.

> If I recall corrected the donation when to the Mayo Clinic. My Dad

> and I are in the process of finding the best way to have my Mom's

> brain used for research after her death, as is her wish.

> >

> > Does anyone remember how it worked? I have been in contact with

the

> > Harvard Brain Bank, but I am wondering if the Mayo Clinic might

be

> > better. Is anyone doing study on LBD specifically?

> >

> > Thanks in advance.

> >

> > Take care,

> > Dorene

> >

> >

>

>

>

>

>

>

>

[Guest guest]

We also had the toxicology report, mainly because of all the meds he was given,

but the only thing that showed was the morphine that he was given for the last

several days.  The other meds had left the system by then, I guess.  I still

believe he may have had NMS, which might have accounted for his extremely high

WBC (26,000), but the hospital denied that; however, they couldn't come up with

a reason for that high WBC.

The body autopsy showed amyledosis in the heart muscle, which we would never

have suspected.  From what I understand, there is a connection with that and

AD.  They called the COD acute pneumonia, but the hospital said he didn't have

that less than a week before.

I had been after them for weeks for giving him Seroquel  and Ativan, but they

wouldn't stop.  However, after I mentioned NMS to the doctor and he denied it,

when they sent him back to the NH, there were orders not to give him either of

those.  Strange????

________________________________

To: LBDcaregivers

Sent: Thursday, November 13, 2008 9:45:40 PM

Subject: Re: Brain Donation to Mayo Jax

In addition to donating brain tissue, one very clever person I

recently worked with had CSF (cerebrospinal fluid) collected. So if

there turn out to be tests later on where living people can have CSF

tested to see if they have a certain amount of alpha-synuclein

protein, for example, to diagnose LBD, there will be some CSF around

for at least one gentleman with path-confirmed LBD.

Like June, I also support the idea of full body autopsy. Children

can learn a great deal about what they are inheriting. We had no

idea my dad had severe heart disease until the post-mortem exam. Now

I know I have to be especially cautious with cholesterol intake and

get the C-Reactive Protein test (rather than the standard cholestoral

test).

I know of others who want to have a toxicology exam for their loved

ones post-mortem.

FYI - in our local support group, not everyone clinically diagnosed

with LBD ends up having path-confirmed LBD! You'd be amazed...

> >

> > I have this question also, as Mom and I discussed this in a

> somewhat lucid moment last week.  She wants the Dr to open her

brain

> now and find out what is going on.  I told her that can't happen

> until after her death.  She wants to donate and try to help others.

> >

> > Kat in IL, caregiver to Mom, Jane, 86, brainstem stroke survivor

> 2/06, dx LBD 3/08

> >

> > ____________ _________ _________ __

> > From: dunnlease <dmolise@ >

> > To: LBDcaregivers@ yahoogroups. com

> > Sent: Wednesday, November 12, 2008 1:20:00 PM

> > Subject: Brain Donation

> >

> >

> > Hello All:

> >

> > Some time ago there was a post about brain donations for

research.

> If I recall corrected the donation when to the Mayo Clinic. My Dad

> and I are in the process of finding the best way to have my Mom's

> brain used for research after her death, as is her wish.

> >

> > Does anyone remember how it worked? I have been in contact with

the

> > Harvard Brain Bank, but I am wondering if the Mayo Clinic might

be

> > better. Is anyone doing study on LBD specifically?

> >

> > Thanks in advance.

> >

> > Take care,

> > Dorene

> >

> >

>

>

>

>

>

>

>

[Guest guest]

We also had the toxicology report, mainly because of all the meds he was given,

but the only thing that showed was the morphine that he was given for the last

several days.  The other meds had left the system by then, I guess.  I still

believe he may have had NMS, which might have accounted for his extremely high

WBC (26,000), but the hospital denied that; however, they couldn't come up with

a reason for that high WBC.

The body autopsy showed amyledosis in the heart muscle, which we would never

have suspected.  From what I understand, there is a connection with that and

AD.  They called the COD acute pneumonia, but the hospital said he didn't have

that less than a week before.

I had been after them for weeks for giving him Seroquel  and Ativan, but they

wouldn't stop.  However, after I mentioned NMS to the doctor and he denied it,

when they sent him back to the NH, there were orders not to give him either of

those.  Strange????

________________________________

To: LBDcaregivers

Sent: Thursday, November 13, 2008 9:45:40 PM

Subject: Re: Brain Donation to Mayo Jax

In addition to donating brain tissue, one very clever person I

recently worked with had CSF (cerebrospinal fluid) collected. So if

there turn out to be tests later on where living people can have CSF

tested to see if they have a certain amount of alpha-synuclein

protein, for example, to diagnose LBD, there will be some CSF around

for at least one gentleman with path-confirmed LBD.

Like June, I also support the idea of full body autopsy. Children

can learn a great deal about what they are inheriting. We had no

idea my dad had severe heart disease until the post-mortem exam. Now

I know I have to be especially cautious with cholesterol intake and

get the C-Reactive Protein test (rather than the standard cholestoral

test).

I know of others who want to have a toxicology exam for their loved

ones post-mortem.

FYI - in our local support group, not everyone clinically diagnosed

with LBD ends up having path-confirmed LBD! You'd be amazed...

> >

> > I have this question also, as Mom and I discussed this in a

> somewhat lucid moment last week.  She wants the Dr to open her

brain

> now and find out what is going on.  I told her that can't happen

> until after her death.  She wants to donate and try to help others.

> >

> > Kat in IL, caregiver to Mom, Jane, 86, brainstem stroke survivor

> 2/06, dx LBD 3/08

> >

> > ____________ _________ _________ __

> > From: dunnlease <dmolise@ >

> > To: LBDcaregivers@ yahoogroups. com

> > Sent: Wednesday, November 12, 2008 1:20:00 PM

> > Subject: Brain Donation

> >

> >

> > Hello All:

> >

> > Some time ago there was a post about brain donations for

research.

> If I recall corrected the donation when to the Mayo Clinic. My Dad

> and I are in the process of finding the best way to have my Mom's

> brain used for research after her death, as is her wish.

> >

> > Does anyone remember how it worked? I have been in contact with

the

> > Harvard Brain Bank, but I am wondering if the Mayo Clinic might

be

> > better. Is anyone doing study on LBD specifically?

> >

> > Thanks in advance.

> >

> > Take care,

> > Dorene

> >

> >

>

>

>

>

>

>

>