View unanswered posts | View active topics It is currently Tue Sep 30, 2014 4:24 pm



Reply to topic  [ 177 posts ]  Go to page Previous  1 ... 8, 9, 10, 11, 12
 Brain Donation 
Author Message

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Jenny,
I am sorry to hear that you have come to this point with your Dad's illness, I am glad you have been reading for a few weeks and are getting some answers here for your question at hand.

_________________
Irene Selak


Thu Jun 14, 2012 9:57 pm
Profile WWW

Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
I have not made these arrangements for my mom yet and I would like to, but like Mary, I have no idea where or when this is going to happen. My sister and myself are trying to keep mom in a facility, but mom gets frustrated and the facilities are often not really equipped to handle her DLB (the one she is currently in wants us to get even more home health care at 20 an hour in addition to the outlandish that it costs for her to be in the facility). Anyway - is there some way to set this up for her in both Michigan and Indiana so that it will be in place regardless of where she is at the time? I so appreciate all the information I get from all of you. Robin, you are the most amazing source of information. I have learned so much from your posts!

Liz


Tue Jun 26, 2012 12:35 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Brain Donation
You could make arrangements for both places. This would require that you have a funeral home selected for both places.


Wed Jun 27, 2012 2:13 am
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Brain Donation
Received Brain Autopsy results for Ted today from Mayo Clinic. Excerpt from the pathologist's report: The final neuropathologic diagnosis is Lewy body disease, transitional (limbic) type.

Comment: moderate-to-severe neuronal loss in the ventrolateral cell grouop of the substantia nigra with Lewy bodies in residual neurons is consistent with clinical Parkinsonism noted in this man. Considering the disttribution and density of cortical Lewy bodes and the absence of Alzheimer type pathology, the likelihood that he would have had clinical features of dementia with Lewy bodys (DLB) is high. The available clinical information clearly indicates that in addition to Parkinsonism, he had progressive cognitivie impairment, visual hallucinations, fluctuations, as well as sleep disorder consistent with RBD, which are typical in DLB.

They said cell loss was severe in the subcortical or middle regions of the brain. They said there was no microscopic evidence for Alzheimer's disease. There were no problems with the blood vessels, and no sign of any narrowing of the blood vessels. There was also no sign of cerebrovascular disease or stroke.

For me, I arranged for a pathologist with the help of Mayo clinic, which was lucky. I found that the social workers and staff at the nursing homes were a little unsure about the process, but were great allies when the time came. I also luckily was able to talk with the funeral home. Between my many conversations with them, and multiple copies of the brain donation paperwork, I was able to make sure this most important thing happened.

A couple of BIG things: 1. Make sure you talk to BOTH the facility people (and remind them AGAIN when things seem close) and the funeral home staff. Also, you can never have too many copies--make sure it's on the chart and that ALL staff on ALL shifts are aware of this special request: 2. Be clear as to where the incision will be made if this might make a difference (originally we were told it would be a small incision in the back of the neck--but this particular pathologist did not do so. Because Ted had been military, his Special Forces beret covered nicely (AND I was ok with whatever needed to be done anyways since the brain donation was so important).


Thu May 16, 2013 11:18 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 740
Location: LA
Post Re: Brain Donation
Thank you, Jean, from the bottom of my heart. I hope that you are well and coping with everything. Sincerely, Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu May 16, 2013 11:32 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Brain Donation
Jean,
I too would like to thank you for posting the finding of the brain study and the important tips for others here !

_________________
Irene Selak


Fri May 17, 2013 10:36 am
Profile WWW

Joined: Mon Mar 18, 2013 9:05 pm
Posts: 2
Post Re: Brain Donation
I see that this topic hasn't had much recent activity so I'm not sure if there is still help available but thought I'd ask anyway. We live in NC and Mom is 84. Over the past year, no two doctors have agreed on a diagnosis. One MD at a major teaching hospital in the state was convinced it is LBD. Another says there isn't a dementia component and it's late, late (in this case, very late) onset paranoid schizophrenia. Mom certainly has symptoms that suggest LBD. Generally, we haven't found a physician who is particularly interested in helping - and we've looked. In the end, in terms of her care now we deal with symptoms and medication reactions and those happen regardless of diagnosis. One thing our family does agree on is our desire for brain autopsy/donation. We brought it up at an appointment with a physician at one of NC's major centers but we were blown off more than once. I saw that the Harvard brain bank can no longer accept brains from dementia patients. If anyone knows where we might find help with this, we would appreciate the information. Thanks very much!


Mon Oct 28, 2013 10:39 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 740
Location: LA
Post Re: Brain Donation
I'm sorry to hear that you are having trouble getting a diagnosis to help you care for your mother. As you know a true diagnosis cannot be made but if you can work with a physician who has dealt with LBD with an open mind and is willing to use the medications which others have found to be helpful, your life will be much easier in caring for your loved one. As to the brain donation, I am pleased to hear that you are interested. I received help and guidance from Robin Riddle. You can look back at some of my entries for more information. To contact Robin go to this website: :Brain Support Network is now a 501(c)(3) non-profit charitable organization. " We make advance arrangements for families to donate a loved one's brain for research and for diagnostic confirmation. And we provide education and support for those dealing with DLB, PSP, CBD, or MSA. Check out our simple website at brainsupportnetwork.org. " Dorthea

robin.riddle@brainsupportnetwork.org

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Last edited by dorthea on Fri Dec 06, 2013 3:25 am, edited 1 time in total.



Tue Oct 29, 2013 4:20 am
Profile

Joined: Mon Mar 18, 2013 9:05 pm
Posts: 2
Post Re: Brain Donation
Thank you for the information and direction! I will definitely follow up. We've seen neurologists, psychiatrists, neuro-psychiatrists, and every combination, including evaluation at what is supposed to be one of the major centers. Right now, the medication combination is better than anything else we've tried, but that's not saying much.


Tue Oct 29, 2013 9:35 am
Profile

Joined: Wed Nov 13, 2013 3:04 pm
Posts: 44
Post Re: Brain Donation
Can someone tell me step one of getting a brain autopsy? I understand through the hospital if the death occurs there, it can be done there. However, if the death occurs elsewhere, a private autopsy must be arranged elsewhere. We live in the triad area of NC. Duke and UNC are relatively close by.
I would like to:
1. get brain autopsy
2. arrange for tissue to be sent to MAyo/Jax

Any help in getting to step one would be greatly appreciated as we are in a behavior crisis at the moment and I can't think straight.

THANKS A LOT!


Mon Jul 14, 2014 11:20 am
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 740
Location: LA
Post Re: Brain Donation
I am so sorry for this late answer but I have been out of town and away from my computer. Your request is very important to me. I think all of your questions can be answered by Robin Riddle. She left no stone unturned in her volunteer help for me. I cannot say enough about her generosity when I knew nothing about the procedure, she was so knowledgeable and willing to carry the ball for me. Yes, I live in Louisiana, she is in California, and the brain was studied in Jacksonville, Florida. Mayo Clinic. I had the results in about six or seven weeks.

After helping over 125 families accomplish brain donation, Robin has now turned her efforts into a nonprofit, Brain Support Network. Anyone can contact Brain Support Network for assistance with brain donation http://www.brainsupportnetwork.org.

I think she will be more than willing to help. Tell her DrP sent you.

robin.riddle@brainsupportnetwork.org

As an EDIT: I see that Robin has helped someone in Wilmington N.C. .. She will ask you for the name of the funeral home you plan to use, so you may want to consider that while you wait for an answer.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Wed Jul 23, 2014 12:18 am
Profile

Joined: Sat May 25, 2013 3:53 pm
Posts: 268
Post Re: Brain Donation
You can also type "brain donation" in the search line of the main LBDA site and they have some information there that might be helpful... Sorry you have to think about all this at once!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Aug 05, 2014 4:06 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 177 posts ]  Go to page Previous  1 ... 8, 9, 10, 11, 12

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr