Joy,
I've sent you an email with details about brain donation in Melbourne, FL.
Thanks,
Robin

Tricia,
I sent you an email last week about details of brain donation in Maryland. I listed the specific questions you need to ask the funeral home. It's preferable if you do that part because it can involve a negotiation about money. If you need my help, let me know. I am willing to make the call.
Robin

Since this post about brain donation seems more comprehensive than the other one, I will add this here too:

If this is something you are considering, please take action NOW. Don't wait until your loved one is on his/her death bed.

As evidenced in the case of F2D, someone's health status can change on a dime. Much better to already have the plans in place.

One thing that was very useful today is that one family member (F2D) was available to me when working out the brain donation details while another family member could be with their father. In your own situations, you might assign another family member or close friend the responsibility for being the primary contact point with regard to brain donation arrangements. Of course we don't all have the luxury of several family members investing so much time and energy as Frank's three daughters have.

Robin

Here's another issue that came up recently when someone asked me to help make arrangements for brain donation: The spouse was in favor of brain donation for the LBD loved one but the LBDer's children were not all in agreement with regard to brain donation. I am happy to help anyone with brain donation. Please ask for my help if this is something you are committed to doing, not just if you are thinking about. I do think there's enough info particularly in this post but also in other posts on the Forum that provide sufficient info as to what it's all about.

I received this email today and thought the questions/answers should be posted here:

"My family has been reluctant to agree to a brain donation with my [loved one] and I would rather have most in agreement before making that decision. However, in the event that does not happen, does having a DNA test done prove helpful (in the event this does prove ultimately to be a genetic issue)?

I think the major objection is two-fold...first, let [my loved one] be after [the] battle is over. Second, if the knowledge doesn't help as far as prevention, why pursue the knowledge...

...And, explaining to family members all that is involved. I'm just curious about how to convey any benefits in the knowledge beyond what I have already done. Oh yes, the issue of expenses involved has been mentioned, too."

Others can post their answers to these questions. Here's my reply: (please note that I'm a layperson so this reflects my simplistic understanding of things)

Q: "...does having a DNA test done prove helpful (in the event this does prove ultimately to be a genetic issue)?"

A: I'm not exactly sure on whom a DNA test would be done. If you are thinking that a DNA test would be done on blood relatives of the loved one, note that there's NO DNA test available that is diagnostic for Lewy Body Dementia. If there were, I think many of us would have taken it! If you are thinking that a DNA test would be done on your LBD loved one, the same answer applies.

The only way a genetics test for LBD could be developed is to have brain tissue. So, the idea is that researchers have a repository of brains from those with pathologically-confirmed LBD, allowing for the DNA of these (deceased) people to be analyzed. Once a genetic marker can be identified, then a test can be developed that can be used in living people.

There are four genetic mutations for Parkinson's Disease. These tests are available now. (See 23andMe.com, for example.)

I hope that others more knowledgeable will weigh in here.

Q: "I think the major objection is two-fold...first, let [my loved oned] be after [the] battle is over."

A: Everyone will have his/her own view of this. It is impossible to say what the "correct" view is. My view is that the person is dead and has no need for his/her brain any further.

My father's view was the same. Presumably, he donated his brain because I told him the knowledge derived would be of great benefit to me. My husband and I both signed up for brain donation at the same time my father did. This took the sting out of the discussion, I think.

What I did not truly appreciate until after Dad's death was how enormously proud I am of him that he did donate his brain. It is the ultimate in generosity. Not only has he helped his blood relatives but he's helped all of us by making brain research possible. My view now is that this was one very positive thing that came out of my dad's negative experience.

It's also given me closure that can only come with the certainty behind his diagnosis. The value of that cannot be minimized.

Q: "Second, if the knowledge doesn't help as far as prevention, why pursue the knowledge..."

A: I do think the knowledge derived from brain research will ultimately lead to identifying the cause and a cure.

Q: "..And, explaining to family members all that is involved."

A: Please read above as to what is involved.

Q: "I'm just curious about how to convey any benefits in the knowledge beyond what I have already done."

A: Please read Dorthea's post here:
http://community.lbda.org/forum/viewtopic.php?t=1570 (this link updated as of 2/15/10)
She conveys the idea that brain donation is the natural progression of caregiving.

Q: "Oh yes, the issue of expenses involved has been mentioned, too."

A: The most I've heard of people paying is $1500 for the tissue procurement. (That's what I paid for my dad's brain procurement.) Most people I've helped with these arrangements pay $600. Some families also have to pay for transportation; this depends on the circumstance.

If you live in South Carolina, there is a pathologist there who will do the tissue procurement for free. The family will have to pay for transportation.

If you live in Florida, there are some circumstances where the tissue procurement is free. Basically, a long application has to be filled out, the person has to be seen at a nearby medical facility, and the person has to agree to brain donation. This all takes time. The family may have to pay for transportation. If this "free" route doesn't work, families can still participate in brain donation; they simply pay the procurement cost.

I hope that others will share their answers to these questions.

Do you have any info on Michigan? Mother has agreed to brain donation
Thanks
Sharon

syt -
Great news! MI is a big place. It depends on what city the funeral home is in (Grand Haven?) and what medical facility in MI (eg, U of MI Ann Arbor?) your mother may have been seen at in the past. Please email me that info, and I can look into it or advise you how to look into it. I do know of a facility about an hour away from Grand Haven that has done brain procurement before for Mayo. I'd suggest using Mayo Jax rather than Mayo Rochester, unless Rochester can guarantee the same turnaround time Jax can (which is 6 weeks) for the neuropathology report.
Robin

Robin
I'll do some hunting -she has not been seen at any of the big facilities- we are closest to Grand Rapids (about 45 miles from GR and about 200 miles north of Chicago). I can call some of the local funeral homes- what do I ask them? we have not picked a funeral home- she has opted for cremation with a memorial service.
Thanks
Sharon

Hi! My dad has LBD and is in the latter stages of the illness. I've been reading the posts about brain donation and have talked to my family about the possibility. My dad is a retired doctor and thus a scientist so I know he would want to help with scientific research.
I was hoping somebody could point me in the right direction about how to begin the process. My mom is starting to do some funeral planning and I wondered if doing a brain donation will affect our choice of a mortuary? My parents live in Oxnard, California so I'm trying to figure out how we would do the procurement.
I spoke with my dad's neurolgist who agreed that Mayo JAX is a good choice. He wasn't sure if it was too far away but based on Robin's post I don't think so. We can handle the fee for the donation so that isn't an issue. I mostly need to figure out how it works and take this information to my family for a final sign off. (I think they will want to do it now that we have spoken to my dad's doctor.) Thanks!

Hello Lucille,
I am sure Robin will get back to you, she really is the one to talk to on this subject, right now we are having many technical issues on the forums, But I have seen her post a few times in the last few days. So hang in there!

Fortunately "lucille" emailed me directly and I got her three price quotes on Friday. Her father is located in SoCal, where I have a fair number of contacts now.

Robin,

I wanted you to know my husband, Cliff North, passed away on Sunday, Aug 9. His brain went to Mayo's in Jacksonville and the other remains went to MedCure in Portland as I had reported to you in March. The process was very smooth and I appreciate the help you gave if helping me pull all the pieces together.

I had contacted Mayo Jax just a day or two earlier because I had heard many repositories were not accepting brains because of the recession and I wanted to be sure we were still on the list. They got back to me that same day and verified they were still accepting brains. I would recommend anyone go this route if possible. We also were able to avoid the cost since my husband had been using the hospital hospice program and the pathologist said they could do it for no cost.

Thank you again for your assistance and I will post again when I get the results.

Sharon North

Sharon,

My deepest condolences on the passing of your dear husband. What a generous donation he made of both his brain and his body for medical research! And thanks to you for making it all happen.

I'm glad I was able to play a very small part in figuring it all out. Coincidentally, just yesterday I began helping a family who wants to do something similar to your husband, and I looked up this post for the MedCure info! So others will benefit from your family's efforts too!

I did hear recently that Mayo Rochester is no longer accepting certain types of brains (unless you are an established patient there) but Mayo Jax is rock solid throughout. We are very lucky we have them around.

Please keep us posted on the neuropathology results. (You should get these in about 6 weeks, assuming your husband's medical records are there. And, knowing you, they've been there for awhile.)

Best wishes to you as you enter a new phase of your life. I'm very sorry for your loss.

Robin

Sharon,
Please except me deepest condolences to you and your family, now it is time to take care of you!

By the way, lucille's father died in January. The brain was donated to Mayo Jax.