Where I'm At

In Beating the Dementia Monster, we discussed an interview I had with a researcher/neuropsychologist about my condition and path forward.  This was in 2016 (or maybe 2017) when I was about 66 and had just begun to experience improvement from my lifestyle changes.  He indicated (a bit indirectly, due, I think to professional considerations) that I was on track to be dead from Alzheimer's disease by 75.  But, he said, if I would just keep up what I was doing, I would last to 85.  I was buying 10 years.  (Again, he indicated this kind of indirectly, but that's what I took from the conversation.)  Considering that I was, at the time, on the edge of a transition to actual dementia, the 75 number is consistent with research I've read.

Of course, with the changes in my exercise habits, sleep, diet, and other lifestyle improvements, I improved steadily until 2019.  But in 2019 I hit something of a speed bump, and I was concerned that the trend was now downward.  So did I peak in 2019?  Or maybe in some subsequent year?

Well, I certainly bounced back in 2020.  Since then I've experienced a few more milder hiccups, but I have bounced back again each time.  As part of a research project at the University of Washington, I've been tested weekly for about 18 months, and I'm happy with how I've been doing.  Also, I practice speaking in Spanish a couple of times a week (in addition to reading in Spanish), and I'm happy with how that goes.  I don't seem to be able to add to my vocabulary, but I can still hold up my end of the conversation.

These measures give me feedback on certain special functions of my brain (notably short-term memory and language).  When I'm tested at Harborview in Seattle, the tests last at least 3 hours, and they probe just about every nook and cranny of my brain.  But I'm not doing any more of those for the foreseeable future.  The results are interesting, but they won't lead to any changes in my treatment ... unless some totally unexpected medication appears on the market.  We drive four hours to get to Seattle, and the tests are quite expensive ... both to us and the insurance company.  So I continue to rely on feedback from the various studies that I participate in and from my personal experience.

I'll turn 75 this summer, but I don't plan to be dead by then.  But will that be the turning point for a steady decline down to 85?  I'll leave that in the Good Lord's hands, but I seem to be doing about as well as other men my age that I know.  We compare notes, and we all seem to be having the same experiences.  

In Beating the Dementia Monster, we cited a study that I've used as a basis for the amount of exercise I get per week.  Basically, it showed that people known to have Alzheimer's disease, but who were getting about six hours of exercise a week, experienced nearly the same level of cognitive decline as people in the control group (those without Alzheimer's disease) whether they exercised or not.  Exercise very much affected the rate of decline for people with Alzheimer's disease, but it did not affect decline among people without the disease.

My personal assessment is that my rate and level of decline at this point is consistent with others my age who have not made lifestyle changes and do not have Alzheimer's disease.  They are experiencing cognitive decline consistent with normal aging.

I have one major fear that we discussed in Beating the Dementia Monster ... the return of what I believe was Benson's Syndrome, or posterior cortical atrophy.  Or "the visual syndrome."  My assessment is that this was what caused me to stop driving in 2015.  My vision was quite good, but I might miss seeing the pedestrian in the crosswalk, even though I looked.  Before changing lanes, I would look but not see the car right there.  My eye might see something, but my brain was struggling to discern what was in the image being presented.  I absolutely would not drive with that kind of thing going on, but the deficiency responded really well to my lifestyle changes.  I now drive as well as I ever have.  But will that problem return?  I'm constantly alert for any changes in vision that might be caused by changes in my brain.

A Crisis in Alzheimer's Research

No, I haven't posted in a while.  For various reasons.  We are presently in Colorado to attend the wedding of our nephew to a wonderful young woman.  But something showed up on my news feed that was worth a comment.

According to the philosopher of science, Thomas Kuhn, a paradigm in a scientific theory ends when the evidence no longer supports the theory.  This is called a crisis for the theory.  So the theory of the solar system with earth at the center went into crisis when Copernicus showed evidence that the sun was the center.  From that crisis grew the heliocentric model (which is not as straightforward as believed in popular culture).  Well, some are saying that "the amyloid hypothesis" of Alzheimer's disease is now in crisis.

We discussed the amyloid hypothesis in Beating the Dementia Monster, noting that it's the most widely accepted hypothesis about how the disease begins and progresses.  Amyloid plaques build up on brain cells, interfering with the information passing between cells and killing the cells.  We also noted that this could be a complete misinterpretation of the data ... that amyloid plaques may actually be part of the body's effort to fight off bacterial or viral causes of the disease.

For sure, Aduhelm and Leqembi remove amyloid plaques and also produce some limited improvement in symptoms of the disease.  The assumption is that the disease slows because the plaques are being removed.  But now another monoclonal antibody successfully removes the plaques, but there has been little or no improvement in the condition of the patients.  This challenges the assumption that has underpinned the vast majority of Alzheimer's research and the pursuit of pharmaceutical treatments.

The monoclonal antibody is gantenerumab.  We did discuss this failure back in 2020, but the implications of this now seem to be sinking in.  Here's the article that caught my attention.

My early manuscript of Beating the Dementia Monster was actually quite skeptical of the amyloid hypothesis.  But reviewers led me to think I should tone that down, and so I did.  Maybe I should have kept my original treatment.

 

My interview at the Hip Senior online magazine

A few days ago, I was contacted by Marianne at The Hip Senior magazine, where they wanted to feature Beating the Dementia Monster.  The Hip Senior is an Internet resource for all things senior living-related.  I, of course, thought this was a really good idea, and the book is now available on their web site.

As part of the book promotion, she also taped a podcast (video interview) with me about my experience and about the book.  She posted it with the book entry.  So click here for the book entry.  You can then scroll down to see the interview.  (I am grateful for her editing skills...)  You can also see it here on YouTube.