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 Brain Donation 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Thank you for sharing that Mary, and condolences on the loss of your mother. I hope you are at peace, and that the brain donation contributes to that peace.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Jan 03, 2012 5:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
MaryM,
Thanks again to you and your family for donating your mother's brain and for making advance arrangements for this. The research such a precious donation enables helps us all. I would think that her case is especially interesting to researchers, given her age. It's wonderful you and your family derive such great satisfaction from the brain donation, and that you want to encourage other families to participate as well.
Robin


Tue Jan 03, 2012 5:49 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
Thank you Mary for your insights. I do need to get on this. I am so disorganized and trying to juggle way too many things in my life right now. However, this is important. Thanks to Robin who is providing everyone with the resources to do this and to help make things better for future generations of folks with DLB and DLB loved ones.

Liz


Tue Jan 03, 2012 6:53 pm
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Joined: Tue May 22, 2012 6:13 pm
Posts: 1
Post Re: Brain Donation
On Sept.7, 2011, my husband Bryan, lost his battle with Lewy Body Dementia. Upon his death our family decided we wanted an autopsy on his brain to get a definitive answer on whether he suffered from Lewy Body or Parkinson's. He had been diagnosed with Lewy Body at Mayo's in Nov. of 2009. His local neurologist was not convinced it was Lewy Body because Bryan did not have visual hallucinations. His brain was harvested at our local medical facility and sent to a forensic neuropathology consultant. She found frequent Lewy Bodies throughout the brain but did not give a definitive answer on Lewy Bodies vs. Parkinson's. In her report she said the saved brain tissue retained in formalin in storage could be submitted to a brain bank for possible further evaluation. I could not find a brain bank who would accept the brain matter. Four different brain banks responded they were unable to accept the tissue because Bryan had not been enrolled in any study of Lewy Body disease that followed certain protocol. They were all sorry they could be of no help. I highly suggest if your family is dealing with Lewy Body, find a university or facility that is running a study you can participate in. Brain autopsy would most likely be part of it. It was never suggested to us by anyone that this would be a good idea.


Tue May 22, 2012 7:11 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
Thank You Gayle -

That is important information. I will be sure to bring this up with my mother's neurologist at our next appointment. I know that Robin has connections, but I did not know that one might need to be involved in a study first.

Liz


Wed May 23, 2012 5:55 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Brain Donation
Frank was not part of a study, I called the Harvard Brain Tissue Resource Center and signed both Frank and myself up for brain donation. When I knew the end was nearing, I called them and they told me what to do. Our funeral home was familar with the process so the procurement when very smoothly. I needed to know what we had been dealing with and am pleased with our discision. The bank was more than appreciative and my hope is that, in some way, it will help others.

Fondly, Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed May 23, 2012 8:50 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Brain Donation
The neuropathologist with whom I have arranged to autopsy my husband's brain when the time comes told me that the tissue would be used for research 'if the pathology is interesting'. My husband is not part of any study and we have arranged to have the autopsy performed only to get a definitive diagnosis.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed May 23, 2012 9:21 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
Yes - My mother, when she isn't being paranoid or crazy, has requested to have her brain donated. She wants to help other people. We seem to be in an "early" stage of the disease, though. I am not sure how long the early stage lasts, she has been in it for awhile, but she seems to cycle from near fine with some personality issues and paranoia to absolutely unable to get out of bed or do anything for herself and hysterics and lack of connection with reality. It is amazing how much fluxuation this disease can cause.

Thanks for info ladies.

Liz


Wed May 23, 2012 10:55 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Gayle,

My condolences on your loss.

I'm so sorry that the neuropathology consultant your family dealt with was not able to provide you with a definitive diagnosis. I believe a definitive diagnosis was not provided to you because of the lack of skill of the consultant. This is one reason I highly recommend brain donation to Mayo. The neuropathologist at Mayo Jax is one of the top few neuropathologists in the world. He co-authored the diagnostic criteria for Dementia with Lewy Bodies.

Several years ago I saw a neuropathology report by a neuropathologist in NY. The report said "the patient may have this or may have that." Totally unacceptable! I suggested the family order the brain bank to send *all* of the tissue to Mayo Jax, who provided a second opinion at no charge. The Mayo Jax neuropathologist was able to provide a confirmed diagnosis. (In the case of "maybe this or maybe that," the neuropathologist there also co-authored the diagnostic criteria for both of those disorders as well.)

The donation of a brain is the most important donation a family will make. Lots of time needs to go into assessing the brain bank. I have provided earlier in this thread the reasons why I think Mayo Jax is the best brain bank in the US for LBD. It also does not require anyone to have participated in a study. The key downside is that the family must pay to get the brain there. Once it's at Mayo, it's autopsied at no charge to the family and kept in the brain bank for years to come for research. (Harvard, for example, publishes no LBD research. Active research is another criteria for evaluating a brain bank, IMHO.)

We've discussed brain donation a fair amount here on the Forum. Unfortunately, the topic has been relegated to its own area due to "sensitivities" with the subject. I agree with you -- it's a critically important step. Dorthea (a member here) refers to it as the last step of caregiving. I'm sorry this was your first post to the Forum as I hope we would've been able to provide some assistance to you on this topic!

Robin


Sat May 26, 2012 4:33 pm
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
Post Re: Brain Donation
Hi every one, I just got the autopsy report from Mayo Jax on my husband, and he did indeed have Lewy Body, I brought a copy of the report to his Primary doctor, who is also the doctor for the nursing home, I hope he will actually read it, and perhaps make more of an effort to learn more about Lewy Body, I didn't feel that they knew much about what they were dealing with, and sometimes didn't care. The nursing staff and aids were much better.

The report gives me comfort in knowing that it was Lewy Body, and that my insisting on their checking his meds to make sure they were compatible was worth it.


Mon Jun 04, 2012 7:15 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Mary,
Thanks again for donating your husband's brain. It is satisfying when the confirmed diagnosis is Dementia with Lewy Bodies, but it doesn't often happen that way!
Robin


Mon Jun 04, 2012 8:51 pm
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Joined: Tue Jun 12, 2012 10:19 pm
Posts: 2
Post Re: Brain Donation
I have been reading the LBDA forum for a couple of weeks now and have found it to be very helpful with lots of issues. This is the first time I have written a post. My father (age 79) was diagnosed with PDD in September of 2010. He has been at home with my mother (age 73) taking care of him since then. He has definitely declined over the last year and a half but when he was hospitalized two weeks ago for a reaction to Seroquel he took a rapid turn for the worse. His neurologist tried to find the right combination of drugs to help him sleep and control the agitation but the longer he has been in the hospital the more he has declined. I think we were just expecting to have a middle stage of his condition but it seems like we are at the end much more quickly than we expected. He will be released from the hospital to a hospice facility either tomorrow or the next day and the palliative doctor who saw him today estimated that the end could be 10 days to 2 weeks. After reading the forum's posts concerning brain donation and talking it over with my mother and brothers, we would like to donate his brain and have it autopsied for a definite diagnosis. His neurologist was all for it also and told us that a local autopsy would not be sufficient. Even though he was diagnosed with PDD, I feel pretty strongly that he had LBD after all that I have read about it from this website, the Boeve article and the book by the Whitworths. I am seeking advice on how to have the process in place so that when the end comes we will know what to do. I am concerned that he could die at any time and I won't have had time to get it figured out. I live in another state and have just flown home today from being there with my parents at the hospital where they are in East Texas. If those of you who are knowledgeable about brain donation could let me know the details and whom I should contact for retrieval and transport, I would very much appreciate it.

Also, I am interested in hearing from children caregivers about concerns over the genetic possibilities of developing LBD. My father was the youngest of 9 children. His mother had some kind of early onset dementia and two of his sisters had some form of dementia also. Of the other siblings, many died at younger ages of heart attacks before they would have had a chance to develop LBD, AD or PDD. There doesn't seem to be much information out there about this but my brothers and I are obviously interested in this subject.

Thanks in advance for all the people who write on this forum. Even though I did not have the opportunity to write with questions during my father's experience with dementia, the information I read here was very helpful to me.

Thanks,

Jenny


Wed Jun 13, 2012 12:58 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
Jenny,

I'm sorry to know about your father. Please contact me right away about your father's brain donation, if you'd like. I help families make these arrangements on a volunteer basis with the brain being donated to the Mayo Clinic. Your family may have to pay as much as $1200 to accomplish the brain donation. I need to know the name of the funeral home your family intends to use.

Last Thanksgiving, I helped an LBD family that lives in Jacksonville, TX. So we'd probably use the same pathology technician as we used in that case. Unfortunately that family wrote the technician two bad checks (so embarrassing!), so we'll have to be extra careful to avoid such problems this time.

Just so you know...in terms of brain pathology, LBD and PDD are the same.

These arrangements do need to be made in advance. I don't know of anyone willing to make the arrangements after death has occurred.

If other family members didn't donate their brains for autopsy, it'll be very hard to say with certainty what they had. Alpha-syn is one gene that is associated with DLB. Or perhaps the family has inherited Alzheimer's? Knowing your father's confirmed diagnosis will be very helpful in figuring out what may be going on there.

Good luck,
Robin

PS. You can contact me via email. My cell phone number is listed on the lbda.org website under support group leaders (Northern California).


Wed Jun 13, 2012 1:19 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Brain Donation
So sorry for your situation, Jenny. My thoughts are with you and your family. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Jun 13, 2012 7:25 am
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
Post Re: Brain Donation
Jenne, I hope you have contacted Robin, She is so very helpful in making the whole process simple, she was able to make contact with the people necessary, get the proper consent forms
to me, so that when my husband passed, just a few days after contacting Robin, I was a ble to have everything in order, and check written to to pathologist and in the hands of the funeral home that would be handling the transfer to the pathologist, and burial just in case I was not with my husband when the end came. She did this in just a few days, although I know that she would much prefer to have more time to work out the arrangements, but in our case time was not to be had.

Her help was invaluable, and just last week I recieved the autopsy report which confirmed that my husband did have LBD. Not quite 8 weeks after my husbands death.

Without Robin's help I would not have been able to donate the brain, something so important, for my family to know what really was wrong with my husband. Although I had planned on donating the brain from the first time I heard about it, my problem was I did not know of course when my husband would die, but I did not know where we would be, because if I was not able to stay in our home, and had to move in with my daughter, with my husband in a different nursing home, 200 miles from our home and the nursing home he was in. The people that would handle the removal of the brain, would be totally different, the reason I had no arrangements in place, when his final illness occured.

Robin stepped in and made it possible, she is a marvel.

Mary73


Wed Jun 13, 2012 10:16 am
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