We visited Brigid the Nurse Practitioner, at the Memory Disorders Clinic at Georgetown University Hospital last week. Seems we've about stumbled to the end of our tour of duty in the Merck vaccine trial. I know two new things: Everyone in the trial received vaccine--there were no placebos, and although nobody in Phase 2 (our phase) achieved immune response, the results are not yet available from Phase 3, which got a bigger dose. Not that it's of any consequence to us even if Phase 3 suddenly mounts an immune response that would make any rebel alliance proud. We (as in Jeff) are ineligible for the "open-label" phase (in which all participants may receive the effective-level dose) because of microbleeds, as revealed by the MRI.
Ho hum. It would greatly surprise me if, even with immune systems everywhere locked and loaded, any reversal or containment of the Alzheimer's process were realized. For reasons that amount to little more than whimsical hunches, this is not the avenue where I anticipate advances in the cause. Don't ask me where I do anticipate advances, because then I'd have to pretend to have a grasp of biochemistry, and I most certainly do not. But, from the 2 new things I learned, there is one take-home point: Every time I tell the Red Cross people that Jeff can't donate blood because he was the recipient of an experimental vaccine, I am not merely blowing smoke.
Brigid did point me in the direction of a researcher at NIMH who is interested in the more unusual variants of Alzheimer's, of which Jeff's version appears to be one. I discern from the website that they are conducting shorter term studies, mostly involving PET scans. Part of me says, "Oh why not, what else do we have to do?" And the other part--the more phlegmatic twin--says, "Of what possible efficacy could it be to stick Jeff in a hour or so-long scanner several more times?" (Apart from the general contribution to research which, truth be told, was really the only driving factor the first time around.)
But now, even considerably less than 3 years ago when we started the Merck trial, he has so little personal interest in or grasp of the whys, wheres, and hows of these clinical trial processes that, frankly, it would only be of interest to me. Jeff would just be going along, as he usually does, wherever I go, gently accepting the needlesticks and cognitive hoop-jumping, while enjoying the simple perks of food, coffee, and the same 4 iPod playlists over and over on the way to and from D.C. (It might be time for me to snag some new tunes.) So, I'm inclined to consider his days as a research monkey over. I'm not 100% sure of that, but it's a decided inclination.
This has been a curious year of somewhat inscrutable disease progression. Progression has undoubtedly occurred. Getting in the car presents new levels of challenges as Jeff must be guided to the proper car, the proper door, and the proper car appendage on which to pull. (the door handle, not the side view mirror.) Getting dressed has gone from semi-reliable, to a ritual where--at shower time--I lay the jeans on the bed, spread out so it's clear they're jeans. I place the briefs on top of the jeans, to insure they are approached first. I select a clean shirt and set it next to the jeans, and just south of Jeff's wallet, belt, and hanky. I can still expect him to turn up needing help with the belt. The dirty clothes I must grab as they drop, or else they'll likely be re-worn for days, jammed into mystery drawers, or handled in such a way as to cause the handful of mixed nuts and dog treats that have been stuffed in the front pocket to scatter all over the bedroom rug.
The inscrutable aspect is that I still don't see this beginning to look like the inexorable march toward the time when I may need to, justifiably, consider seeking caregiving help. Realistically, it cannot be other than that very inexorable march, but I'm not yet seeing the landmarks that tell me I'm getting close. I still have this weird sense that this is how it will be forever. "This" being a life condition wherein I'm the spouse-parent to an unusually compliant toddler, who happens to be in his 60s.
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