A former co-worker of mine died yesterday, she was only 22. Her father was also a co-worker. I told my former boss today about a poem here that said something to the affect, please don't stand at my grave and cry, I am the stars, etc. and he really liked it & asked if I could find it.
I have been through 9 pages of posts, but came up empty. It is so tragic to lose a child. I told my former boss I would try to send it to him, so any help would be appreciated. This time, if someone finds it, I will keep it. I was remiss not to do it before.
Have been "stalking" the boards and remember reading about drug trials. Can anyone tell me where to find comments. DH has been invited to join trial for infusion of Bapineuzumab. Wondering if anyone else has participated in this and if you had any positive - or negative - results.
I am sceptible about these trials since he is, so far, in the very early stages. My heart says go for it! -Do all you can to prevent the inevitable, but my head is screaming NO!!! You don't know what you'll get into!
Would appreciate direction and advise from anyone who has been there.
The primary thread on this topic is "Drug trials / drug vaccines". Brought it to the top for you.
There are also a bunch of blogs by Joan ... they struggled to get Sid into a Bap trial, and then he ran into a problem and was dropped. So sad. But most of that is briefly summarized on the thread.
I was very interested in getting my husband into that trial, but they won't take him because he's on huperzine A. Despite the fact they'll take people on any of the other cholinesterase inhibitors, they consider this one to be investigational, so no dice. (He was in the Phase III clinical trial on huperzine A, for 2.5 years. He is continuing to take it now that the trial is over.)
Since then, I began to be ever so slightly concerned about the potential problem for bleeding in the brain to develop. There is another trial on another immuno-type drug, GammaGard, which has either just started or is just about to start. It looks as if there might be fewer safety issues, since GammaGard is already FDA approved for other disorders. You might want to look into that.
Then there's also the RAGE inhibitor trial (receptor for advanced glycation endproducts, if I recall correctly), which looks very promising, and started recruiting recently.
I'm hauling my husband in to see his neuro tomorrow, to discuss those. His neuro is the Principal Investigator on the RAGE trial, and possibly will be on GammaGard, too.
With regard to the battle between your heart and your head ... many treatments are more effective in the earliest stages of a dementia syndrome. So in my book, you do whatever you can to stop AD in its tracks, and hope that the miracle cure will be found before it's too late for your spouse. My husband was already "moderate" when he was diagnosed. The huperzine A was, I believe, very effective at slowing down the progression. Now I'm looking for something else to help reduce the damage being done to his brain.
I do, however, research the new drugs thoroughly with regard to what is known about safety, and about the mechanism of action. I have crossed off my list a number that I don't believe are going to prove out, and refused an invitation to participate in a trial that I felt was too dangerous. (It involved drilling holes in the skull to inject a gene therapy drug directly into the brain.)