JOAN’S BLOG – TUES/WED, NOVEMBER 11/12, 2008 – THE NEUROLOGY APPOINTMENT –NOT THE BEST NEWS FOR US/ HELPFUL INFORMATION FOR YOU

Another 3 ½ hours at the memory disorders clinic on Monday, mostly devoted to extensive cognitive testing that exhausted Sid. Although we received some discouraging news, I was able to return with interesting information for those of you who are considering, or already participating in drug trials.

First of all, there were definite indications on the MRI that Sid had experienced some minor brain bleeds at one time. It was most likely before the trial began. To those of you whose spouses are in the BAP III trial – Elan has completed the re-examination of the MRI’s of every trial participant. 5-6% were found to have had “abnormalities”, and were immediately dropped from the trial. You know how scientifically challenged I am, so I can only report in the simplest of terms that Elan used a different, more extensive MRI technique in their re-examination.

The doctor explained to me that the plaques and tangles  in the brain are tied up in the blood vessels of the brain. The drug is designed to pull the tangles out of the brain, but the risk is that in doing so, a blood vessel will be damaged and leak.

My next question was, of course, about the possibility of putting Sid in another trial. Here comes Catch-22. Because there is still BAP vaccine in his brain, it would throw off any data if he were in a different drug trial. So while the drug from the first trial is dissipating, and not doing him much good, he is ineligible for another trial. AND just to make things more complicated, it is unlikely that any other drug company would accept him with evidence of previous brain bleeds.

My main reason for reporting all of this is to give you information that you can factor into any decisions you are considering regarding drug trials. 

Next up was the “elephant in the room”  – the driving issue. The doctor brought it up, because we had not really discussed it during the last two trial visits. He told Sid that his memory problems were making it too risky for him to drive, that a momentary lapse in judgment could cause a long lasting disaster, and that once there is an AD diagnosis, the lawsuits in the event of an accident are monumental. He said that it was better to err on the side of caution and cease driving.

Previous to this declaration, Sid had insisted that he would listen to no social worker, no lawyer, no support group buddy, no insurance agent, no friend, and no other doctor, EXCEPT his own neurologist concerning the driving. Once the news was delivered from his own neurologist, whom Sid respects and likes more than any professional on earth, Sid.........did not accept it. Were you expecting otherwise? Much to his credit, he did not cause a scene, but my heart sank as I saw the sadness and depression in his eyes. I could see his body slump, as if hope had been drained from it. That is another cruelty of this damn Alzheimer’s Disease. It steals hope.

In one visit, he had been told that there was little chance of another trial in the near future, and that he definitely should not be driving. The one glimmer of hope we have is that once the vaccine is out of Sid’s system, our neurologist will do everything possible to get him accepted into another trial. In the meantime, we must go forward. We are working on ideas that will not only keep Sid busy, but that he will like, and not feel he is being forced into like a child.

Now I am extra thrilled that we are going to Chicago to be with family for Thanksgiving - it will keep us both busy and involved, instead of sitting here alone.

©Copyright 2008 Joan Gershman        

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