mockturtle -

You have italicized this: "even after they have stated they are not interested."

If you are suggesting that I have done this, please email me privately. It would certainly be a waste of my time to suggest brain donation to someone if they've stated they are not interested.

Robin

I heard her say "from the very beginning" which is a little different wording than "the first interaction with patients." She also emphasizes that it is at a time of calm, when the need is not imminent. She has the huge advantage of seeing the caregivers and/or patients face to face and can judge their reaction and adjust her communication style. We often don't have that in addressing fellow posters -- especially new ones. She is also in a very different setting than we are here. She runs a study. The people she is talking to want/need to know what being in the study means -- what is optional, what is expected, how the greatest contributions to the study can be made, etc. In a sense they come to her expecting to receive all kinds of information, and that she would bring this topic up is not a surprise in that setting. The context is very different here.

We share all kinds of information with each other – about things as diverse as fidget toys, condom catheters, hospice, respite care, feeding tubes, runny noses, and brain donation. We don’t need to hit every newcomer with every topic in the first interaction!

I have to agree that timing is everything! I found this forum after Mom passed and had been virturly alone in Lewy Land. As you all know a very stressful time of life.

When I first wrote, I was immediately told why brain donation would have been worhwhile. I had made the decision not to have an autopsy and had come to peace with not knowing definitively. It was quite upsetting to be approached like this on the anniversary of my mother's passing.

I like the idea of having a place to go ( a topic) to learn about such things when the time is right!

Sharon E.

Oooh, this is a touchy subject.

Everyone has personal emotional reactions to the idea of brain donation. For myself, I am science oriented and see no downside at all.

Robin, it would be helpful to know in some detail the Mayo research that uses brain tissue.

Dorthea:

Feet of clay? Nonsense. Donations needn't come from lofty and noble ideals. Practicality is just as good, maybe better.

Donating the brain is a very personal decision and I respect
everyone's right to make the best choice for his or her family. If this is a subject that you are not interested in just pass it over like we do anything else we aren't interested in.

Everyone should feel comfortable here, no matter what the subject is!

I think because this is such a personal and touchy subject, and people have expressed some pretty strong feelings about the timing and no. of times they were approached about brain donation, it is not all that simple to just "pass off".
This isn't like "I'm not interested in condom catheters" or "I don't like to bake so I'm not going to read the things about recipes in the Respite Room" or whatever.
It is a subject that many, many people are really sensitive about, and when they haven't asked about or expressed interest or info. in the subject and either the timing is off or they have been approached several times, I think we all need to listen to that. People leaving the forum because they are uncomfortable in having been asked about donation right off the bat is not a good situation. I don't think people should feel uncomfortable when they first get on here, or even after they've been on here for a while. Lynn

Lynn,
I don't disagree with anything you are saying, and if people have left the forum because of this issue then I am unaware of it, so with that said if anyone feels uncomforatable about it please step forward and let me know,I can always be reached privately (Jselak4495@aol.com) I certainly don't want members leaving for any reason other than by their choice or no longer needing the forums ! When I mentioned passing over it I didn't mean it lightly but again if people don't step forward and let us know this is such an issue. and if someone can show me where this is a repeated question to a person please do! In all honestly I feel if a member asks about Brain Donation that is the time to discuss it and not before because it is such a personal issue !

I looked back at my posts to see when I had my first conversation with Robin and I found that I had been a member for some time, months in fact. I read a conversation where someone else asked about when and where and how,etc. Later, I jumped in and asked, "So, Robin, if I am caring for Mr Bobby and I want post-mortem brain donation and death should come like a thief in the night but I have made no previous arrangements, it is too late?" Robin answered me with a simple, "That's right". It was quite a while later before I talked with her again but I found her easy to speak with and that is when I tentatively moved forward with my plans but only after I had questioned her some more.

Dorthea

Dorthea, that sounds exactly the way it should be. You ask, and you get answers, and you make up your mind, and you ask for help (if you need it) and you are given guidance. That is a wonderful service Robin provides, and one I'm grateful for. I believe in the value of research, too. I am glad to see the brain banks enriched because of Robin's voluntary efforts.

The concern arises, at least for me, when people who have not asked or indicated any interest in the topic are approached, especially on one of their very first posts. A post like this, with a clear topic in the subject line, is a perfect place to discuss the topic. Any one not interested in that topic (or not ready to consider it) can just skip it. An introductory post with a subject line like "My mother was just diagnosed and I'm distraught" is not a good place to bring it up, in my opinion, unless the poster asks for that kind of information.

Jeanne,
Very well said, no one should be approaching anyone in this matter or any other unless they ask or show interest first.

No one asked me to consider brain donation. And if it was not an active topic, I would never have thought about it.

Gail,
Thanks for passing this along and I am glad the topic was there for you, I am all for research and finding medications and possible cures for our LO's.

I recieved several positive notes privately how this has helped them make decisions in their own situations but I also think that people must be open to the idea to begin with and if you are a new comer just trying to wade through the tons of information here and not even grasped the idea that your LO has this disease, no less possible death of a LO, it is a hard concept to wrap your mind around !

There are over 1800 members that have at one time read these pages and we are all very diffferent with very different opinions !

With that said I would like to close this subject as far as comments, there is no right or wrong here and that's what makes us all special we are different, we could beat this to death and still come up with some are ok with it and others arean't !