In 2020, when we published the second edition in paperback of Beating the Dementia Monster, I knew we had just captured a moment in time. It was a moment in the progress … or regress … of my own disease. It was also a moment in time with respect to research on Alzheimer’s disease. In the book, we pointed people to this blog as a resource regarding what would subsequently transpire with me and with research on Alzheimer’s. I think I’ve done a reasonable job in both areas.
However, we recently published the audiobook, and I listened to it. I actually kind of cringed a bit. Not because there was anything wrong with the book for 2020, but that so much had changed since those days. We’ve now sold over 13,000 copies of the book, and people continue to buy it. But it’s badly out of date, and I don’t really have the time or energy to produce a third edition. While I’m pleased with how much distribution Google gives us on this blog, all of those 13,000 readers aren’t getting the latest news. Especially since there have been some recent newcomers to the blog, I thought I’d summarize the things I heard in the audiobook that should be clarified.
First and foremost, at least with respect to Alzheimer’s disease, I continue to do well. My wife and I get to the gym pretty much every day, and we make a serious effort to stick with the MIND diet. They say they want to test me every three years at the University of Washington’s Harborview Medical Center, and this is the third year. So, if they haven’t forgotten me, I should be tested this summer. We’ll see how that goes. But I’ve been participating in several research projects, and I know my memory and cognition have been just fine. My own assessment is that there’s been some deterioration, but it seems consistent with the experience of friends my own age. So it’s consistent normal aging.
My balance is terrible, and I’m wondering if I won’t be needing a walker in a year or two. But they attribute that to a separate brain syndrome, cerebellar dysfunction. Cerebellar dysfunction may also be causing my insomnia, and they’re investigating that. But I’m 100% happy with my memory and cognition right now. In the future, will the Alzheimer’s reassert itself, especially if I can’t work out at the gym as I have until now? That’s likely, but there’s no sign of that now.
At the time we went to press with the paperback in 2020, I was looking forward to the outcomes of several important studies. But then covid happened. It, of course, played havoc with pretty much every study out there. I was interested in what was to be the definitive study of the MIND diet as well as the US POINTER study. The US POINTER study was to replicate the results of the FINGER study we discussed in the book. The FINGER study was closer to a randomized controlled trial rather than the much more common and more easily conducted longitudinal studies. In longitudinal studies, they study populations with respect to, for example, exercise and the incidence of dementia. They often rely on surveys and assume people accurately report what they ate and how much the exercised. In the FINGER study, they had actually changed people’s habits and measured the results. So it was more reliable and produced remarkable results. And so it was to be for the US POINTER study. The US POINTER study was to have produced results by early 2023, but that didn’t happen. I’m sure that’s because of covid. According to the web site, the study is still in progress.
We also expected results from the “MIND Trial to Prevent Alzheimer’s Disease” in early 2021. That, too, fell victim to covid. When the results were finally published July 2023, they were disappointing. In my opinion, covid so disrupted the study as to cause me to doubt it. Also, I had some issues with their protocol. Other published studies of the MIND diet have produced more encouraging results.
In our book, we we had a positive sense about the monoclonal antibody treatment code named BAN2401. We said that a phase 3 trial was still required to prove whether it worked and if it was safe. That trial was conducted, and the results were reasonably positive. The drug, subsequently named lecanemab, is now approved and marketed as Leqembi. In use, Leqembi does somewhat slow the progress of Alzheimer’s, but it’s not a cure. Like all of the monoclonal antibodies for Alzheimer’s, it can cause microhemorraging in the brain. Patients taking Leqembi must be monitored with periodic MRIs.
So these are the things that most struck me when I listened to the audiobook, things that could use updating. I hope this is helpful to people who read the book recently, but could benefit from an update.
No comments:
Post a Comment