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 Brain Donation 
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
Robin:

You really are amazing! To be willing to help people with this is such a gift to everyone. I think people don't do this ahead of time because they don't really know what to do. I know I don't. I am going to talk to my mother about this and discuss this with the neurologist. My mother is currently going to the Indiana University Medical Center for neurology but is living in Michigan. I have no idea how to arrange this sort of thing. What paper work needs to be done? How does one arrange this with the local hospital? What does one do if one isn't near the hospital one has arranged this with? It seems to me that it is rather complicated. If my mother isn't in hysterics (she typically is), I will try to ask the Doctor's advice next week when she sees her neurologist. I think this is a terrifying disease myself and I spend much of my time now worrying not only about my mother, but the rest of the family. I don't want this disease for myself, my sister, my aunt, and especially not for my children - so any help that can be made via science and donations is a wonderful thing.

Liz


Thu Oct 20, 2011 2:48 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
Liz,
Please email me directly. You can accomplish that by clicking on the EMAIL button at the bottom of any of my posts.
Robin


Thu Oct 20, 2011 3:09 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Re: Brain Donation
Liz, try to not worry about this. It is a daunting experience but you will find by taking one step at a time, it can be done. Robin will be at your side [so to speak]. You have already taken the first step, which may be the hardest. I had a dear friend help me check out the paper work for accuracy and then, because I almost got cold feet, I gave her everything to put in the mail... I could not do that. But you will find a feeling of relief when it is done. Try not to concern yourself about the "what ifs". You cannot know those answers until the proper time. The main thing is, you will be prepared for whatever you face. For now, do it and forget it. Knowledge is growing in leaps and bounds. I'm proud of you!

Dorthea


Thu Oct 20, 2011 3:30 pm
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: Brain Donation
Dear Robin ~ Wayne is in the very last stages of his LBD/Parkinsons would it be possible for you to lead me through what I need to do to Donate his brain for study. We live in Michigan about 45 minutes from Ann Arbor in a small village called Onsted. I know that time is short and there may not be time. He is shutting down and refusing food. We are using the Purse Funeral home in Adrian, MI. My email address is: jeaniewayneweeks@hotmail.com. With all the emotions I am going through I am not sure I can do this....but will try. Jeanie


Wed Oct 26, 2011 9:18 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Brain Donation
Be strong, Jeannie. I can't guarantee, but strongly believe that you will feel really good about the donation. I have posted many times about that. Your husband and mine may offer the breakthough needed to conquer this nasty affliction.


Wed Oct 26, 2011 9:46 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
Dear Robin (and all the other wonderful, supportive people out there):

I have been waiting to have a "good" constructive conversation with my mother again before contacting you. Although, she is consistent about wanting to do this. However, she is rather paranoid right now and angry with us. My mother has a personality disorder that precedes the LBD. As a result, she has always been a bit emotionally abusive as a means of controlling the people around her (she grew up under extremely challenging circumstances). Anyway - we have had a bad week or two in which she has been worried that my sister and I are out to get her (put her in a nursing home, steal her assets, keep her from getting meals in her room, etc.) We took her to the neurologist today and had her medications increased, so we hope this will help. Anyway - I will contact you as soon as she is calm again and I can have a constructive conversation with her. It is really wonderful that you are so willing to help other people through this. It is also so wonderful to have all of the great people on this list to share with. This may be the most difficult and frustrating thing I have been through.

Liz


Thu Oct 27, 2011 8:27 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Brain Donation
Liz:

If you know her true wishes are to donate, trying to get her to talk about or confirm that position while she is not her real personality-self could backfire if she is perceived to balk. You could be criticized and/or have a heavier guilt factor involved in your decision. I'm not sure my husband wouldn't have been a little creeped out at the idea, but my belief is that he no longer needed his brain and we all do.

Gail


Thu Oct 27, 2011 9:12 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Brain Donation
Liz, I think that I agree with Gail on this. Don't you want to act on what your mother wanted, consistently, when she was herself? It seems kind of unfair to her to let Lewy take over the decision-making now.

This is very hard, isn't it? Our loved ones are entitled to make their own decisions, but are those decisions really theirs when they aren't themselves? I can see why you would be waiting to talk to her about this until she is more in control. But what if that doesn't happen?

Could you go ahead with starting the arrangements, and if later in a clearly lucid period your mother instructs you that she does not want this to happen, cancel them?

I think I had this easy, since Coy has had plenty of lucid time to state his intentions, and I know that they are entirely consistent with his past actions and beliefs. When it isn't so clear-cut, it must be harder on the caregiver.

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


Thu Oct 27, 2011 10:52 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
Jeanie,
Sorry, I'm a bit behind this week. I just read your post tonight on the LBDA Forum. I can work on this tomorrow (Friday 10/28). A couple of years ago, I had a case in Pontiac, MI, and we used someone in that city for a reasonable price ($500 at the time....don't know if it's higher now) for the brain procurement. Probably your funeral home would charge you something ($200?) for transportation there. I can make the phone calls on Friday about this but I only want to take the time if you are for sure going to do this. I don't know of anyone who regrets donating a family member's brain though I do know of many, many people who regret not donating their family member's brain.
Let me know,
Robin


Thu Oct 27, 2011 11:05 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
To anyone interested in brain donation,
Please don't wait until your family member is near death before making these arrangements! Most cases take 3-5 hours of phone calls and emails, and another 2-3 hours to type up detailed instructions. In both cases, it's very hard for the person consenting to the brain donation to focus on the details because they've got more important things on their minds. So, if you are interested in this, make the arrangements when your family member is doing well, and death is a long way away. There's no such thing as "too early" in making these arrangements.
Thanks,
Robin


Fri Oct 28, 2011 5:58 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Brain Donation
I agree with Robin, for your own sake, if you plan to make a brain donation, make the arrangements NOW. After Frank passed away, it only took a phone call, printed the consent form from the computer and faxed it to the brain bank, 1/2 hour, and then they take care of the rest. I called again when Frank was on his way to the funeral home and the pathologist arrived there within the hour. There will be some paperwork being mailed in a week or so but the important part was done.

I will post the results when I get them, it may be 2-3months, I'm anxious to KNOW and so pleased that Frank and I decided to do this a few years ago.

Gerry

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


Sat Oct 29, 2011 3:41 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Brain Donation
Hello Everyone:

I definitely plan to arrange this ahead of time. I don't think we are very close to the end of her life at this point, though, and my mother has some mental illness that is more than just DLB. I am not sure her mental illness and HER DLB aren't related, but it is clear that they aren't for most people. Right now she is in a paranoid stage of her cycling. We also upped the exelon patch which both helped - and hurt. She is mentally more alert, but certain that we have all failed her by not taking her into our homes and spending all of our time with her. She is absolutely certain that we are trying to commit her to a nursing home or a mental institution right now (sigh). She is extremely demanding and disruptive. I would have loved to be able to keep her at my house - but we tried for over 6 months and it was very very hard on my kids. She is angry now about the fact that she is in assisted living and that they aren't taking care of her the way that she feels they should (and they aren't - I have issues with them too). I am waiting for her to be in a more reasonable and calmer stage to talk to on this. It is her idea. So I feel like it is the thing to do. The question is timing. If I bring this up while she is paranoid, it is just more evidence (somehow) that we don't love her. If I do it when she is feeling good or fairly normal mentally, then we are helping her to accomplish something that she feels strongly that she wants to do. However, I am going to contact Robin and see what can be done to start the process.

Liz


Tue Nov 08, 2011 12:51 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Brain Donation
I also didn't think my husband was near the end of his life. I hadn't made arrangements, not out of reluctance, just out of lack of pressing need, or so I thought. Then he contracted the pneumonia, which I chose not to treat, and he was dead in a week. With Robin's help, there was nothing to do except sign some papers. That would be because she is experienced with the brain bank at Mayo Jacksonville and everything is simple. Trying to find another institution to donate to and making the arrangements could be very daunting. I never questioned, and still don't, that Mayo was the best recipient.

Also, note from the postings in these forums how often any illness or other incident can send the LO into a sharp decline, which could quickly bring on the end.


Tue Nov 08, 2011 2:36 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
Liz,
Sorry if we "discussed" this before. Your mother's consent to donating her brain is not needed from a legal perspective. Most families do not discuss brain donation openly and do not get the consent of the donor. Most families decide that the donor would want to donate his/her brain if he/she could think rationally about it. Some families base this on the fact that the loved one had signed an organ donation card. Some families base this on the fact that their loved one was a generous person and would do whatever he/she could for family. Some families base this on the fact that their loved one had a scientific mind and would want to further research.
Robin


Tue Nov 08, 2011 3:35 pm
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Joined: Fri Jul 20, 2007 1:53 pm
Posts: 24
Location: MA
Post Re: Brain Donation
It has been several years since I posted here. My mother was diagnosed with LBD in 2007 after several years of symptoms, and passed away at age 92 on 22 November 2011. Two years ago Robin helped me make arrangements for brain donation, and about a week before my mother's death I reviewed the arrangements with the funeral home and with Mayo Clinic's Jacksonville, FL brain bank to make sure all was in place. Everything proceded smoothly and today I received the pathology report confirming the diagnosis of LBD.

A sentence from the clinic's cover letter, "the tissue has been saved and will be used for experimental research on Lewy body disease" is comforting beyond words. For my family and me, this donation was absolutely the right decision and I would regret it forever if we hadn't done it.

And by the way, Robin is THE BEST.


Tue Jan 03, 2012 3:26 pm
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