Saturday, September 30, 2023

Return to Paradoxical Lucidity

Back in 2019, we wrote about a journal article on a phenomenon called "paradoxical lucidity."  What is that?  It's the observation that a dying person with severe dementia may apparently recover their cognition shortly before death.  A friend tells me about how this happened to his father on the afternoon when he died.  There has been interest in the subject, but I haven't seen much actual investigation.  Articles I've read seem to conclude much as with everything else in the world of dementia research, "More research is necessary."  But what research?

I guess they're going to do some more research.  A research team at Mayo clinic is beginning to get organized to pursue this question.  I got a notification email about it, but details for participation have yet to be worked out.  I'll be curious to see how that shapes up, and I plan to share information on it if and when it comes to me.

An obvious objective of the research will be to gain new insight into memory and brain function and help facilitate a deeper understanding of neurodegenerative conditions.  But this touches on some questions people have been asking since the days of Plato and Aristotle.

"Lucidity" is very much wrapped up in the concept of consciousness.  But what is consciousness?  Scientists and philosophers refer to "the hard problem of consciousness."  Is it, as Dr. Daniel Dennett proposes, a phenomenon that arises from the collective activities of the brain?  This is called materialism or physicalism.  Or is consciousness an entity that cooperates with the biology of the brain, but nevertheless exists separately from the brain?  This viewpoint is referred to as dualism and was proposed by RenĂ© Descartes in the 17th century.

So it seems to me that a question the researchers need to investigate is whether biological deterioration of the brain results directly in deterioration of the cognitive function because they are unified, or if consciousness is somehow preserved separately from the brain and is sometimes restored shortly before death.

While scientists sometimes dabble in these questions, from Aristotle until now, these matters have generally been considered to be in the realm of philosophy -- and religion.

Thursday, September 28, 2023

Please support me!

Friends, I am again participating in the Tri-Cities, Washington Walk to End Alzheimer's.  It's coming up on October 14.  

Behind the governments of the United States and China, the Alzheimer's Association is the biggest funder of Alzheimer's research in the world.  And the Walk is their biggest single source of funds.  So I believe my participation in the Walk, with the support of others, makes an important contribution to beating this disease.

I have walked in previous years, and some of you have supported me then.  I'm hoping you will again.  Here is the link to my page with ways you can contribute.

Thanks so much.

My Annual with my Neurologist

This past week, we traveled to Seattle for my annual review with my neurologist there.  Or a couple of neurology people.  We also went for an annual inspection of the retinas of my eyes, which we wrote about before.

The eye research seemed to go as planned, but my data gets anonymized, and no one gets to look at it in the context of a single person.  I don't even get to see my own data.  Instead, maybe someday they'll produce some interesting results and publish them where I can read them.  But this is a multi-year study, and they're tracking a number of us over time.  The way I've seen these things go, I don't know if I'll ever see what came of it.

The meeting with my neurologist may have been pivotal.  While I meet with my neurologist at the University of Washington Brain Wellness Center at Harborview every year, they have not tested me since 2021.  The tests take at least 3 hours, and they are both grueling and expensive.  They have begun to skip years, because my results have been consistently pretty good.

This year, when they called to schedule, I said I didn't see why we needed to test again.  In fact, I said I didn't see why we even needed to meet again.  What are they going to find that would cause a change in my treatment?  The only thing they could add is treatment with Aduhelm or Leqembi, but I wouldn't be interested in either of those.

My neurology meeting began with a resident I'd never met before.  She was very nice and asked good questions.  Of course, I gave her a copy of Beating the Dementia Monster.  Then my regular neurologist came in, and we talked about my future with them.  They clearly wanted me to stick around, but we decided we should move from annual reviews to meeting every second year.  We'll only test if I become concerned that there has been a change.

I told them that I have a number of things I watch to monitor where I'm at.  Most importantly, I look for problems with my driving.  Like close calls with pedestrians.  That caused me to stop driving once before, but for the past several years, I've had no problems.

I also watch to see if I remember to lock my car door when I go into a store.  This was a big problem for me in 2019, but not now.  Also, if I park in a big parking garage or parking lot (like the garage at Harborview!), can I find my car again easily?  (Yes I can.)

Also, for more than 2 years, I've been participating in their Clinical Core Study.  Essentially, I take short memory tests every week.  I don't get a score, but it's easy for me to see how well or poorly I'm doing.

And then, there's using the Spanish language.  If you read Beating the Dementia Monster, you know that I began learning Spanish when I was 59.  (I'm now 74.).  I read from the Bible every day in Spanish, and I speak with friends in Ecuador and Mexico over the Internet a couple of times a week for practice.  The parts of the brain that deal with language are attacked directly by Alzheimer's disease, and I watch for any changes in my ability to converse in a foreign language.

So I have things to watch, and they tell me a lot.  Maybe not as much as their tests, but as much as I think I need to know.

They observed my gait, which has really gone down hill.  I mentioned before that a neurosurgeon diagnosed me with cerebellar dysfunction ataxia, and this is a separate disease from Alzheimer's disease.  He said I should expect my gait to continue to deteriorate, and they have no cure for the problem.  The neurologist also observed that, in my speech, my diction has deteriorated.  I said I had noticed that myself, although it has seemed to come and go as a problem all the way back to 2015.  (We wrote about this in Beating the Dementia Monster.)

So for now, things are really pretty good, at least with respect to my cognitive impairment.  They have pretty smart people there at the University of Washington Brain Wellness Center, and I know I can turn to them if things start to go bad again.

Friday, September 22, 2023

We know that exercise is a powerful treatement for Alzheimer's disease. But how?

In Beating the Dementia Monster, I tell the story of my dramatic walk-back from the cliff-edge of dementia.  My first step in reversing the effects of the disease was to get off the couch and get to the gym.  I did this when my care team and scientific material I read said that lifestyle changes are necessary for someone confronting the disease.  And initiating physical exercise was the most powerful of these changes.

But why is exercise so powerful?  We discussed the hypothesis that's most popular among neuroscientists, and that is that the brain generates the protein "brain-derived neurotrophic factor" (BDNF) during exercise.  That certainly happens, and BDNF has the power to repair damaged brain cells as well as to prompt stem cells in the hippocampus to form new neurons.  

So that's an explanation.  But is that the whole story?  Maybe not.

According to new research published in the journal Neuron, there is a hormone generated during exercise with similar power.  It's called irisin.  The research was conducted at Massachusetts General Hospital.

So what's the deal with irisin?  According to the researchers, they found that "irisin significantly reduces beta amyloid levels by elevating the levels of soluble NEP secreted from astrocytes."  So NEP attacks beta amyloid plaques.  What's NEP?  NEP is an enzyme secreted by special brain cells called astrocytes.  We briefly discussed astrocytes about three years ago, noting that their failure contributes to the advance of Alzheimer's disease.  Apparently that's because they play a role in controlling beta amyloid by secreting NEP.  Note that the latest monoclonal antibody treatments, Aduhelm and Leqembi, work by attacking and removing beta amyloid in the brain -- just like NEP.

Here's a simpler, more easily understood narrative on this research.

So what's our takeaway from an increasingly complex picture?  Physical exercise fights Alzheimer's disease in at least two different ways.  First, it generates BDNF that heals and generates new brain cells.  But we now learn that it also encourages generation of irisin.  Irisin fights the amyloid plaques that interfere with the flow of information between cells and also kill cells outright.

Moral of the story?  Get to the gym!

Sunday, September 17, 2023

Will vitamin D supplements help prevent dementia?

We have been a bit skeptical about many of the claims for various dietary supplements as preventative for Alzheimer's disease and other dementias.  Certainly, if your cognitive issues are caused by a deficiency of vitamin B-12, logic says that taking vitamin B-12 supplements will likely help.  But what about other vitamins?  Evidence has been scant.

About two years ago, I began with a new primary care provider.  He looked at our book and became quite excited.  The story I told and the dementia toolkit were exactly the things he'd been telling his patients.  But he did say he thought I should add vitamin D supplements to my diet.  I followed his plan and then had my vitamin D measured.  The value measured was through the roof, so I significantly backed off.  Nonetheless, I have continued to take 50 mcg of vitamin D3 twice a day since.

Vitamin D is technically not a vitamin, but rather a hormone.  It is manufactured in the bodies of mammals when their skin is exposed to sunlight, and it works to signal the regulation of certain biological processes.  That is what hormones do - signal processes.

So does taking vitamin D supplements affect someone's susceptibility to Alzheimer's disease and dementia?  There is some evidence that it does.  An article published in the March 2023 journal Alzheimer's and Dementia; Diagnosis, assessment, and disease monitoring provides the results of a study of a large population of subjects (12,388) with regard to use of vitamin D supplements and incidence of dementia.  Data on the subjects were found in existing databases from several sources.  The results?  "Across all formulations, vitamin D exposure was associated with significantly longer dementia-free survival and lower dementia incidence rate than no exposure."  In other words, people who took vitamin D supplements had a lower incidence of dementia.

But, as usual, the devil is in the details.  This was a longitudinal study.  Longitudinal studies infer cause and effect relationships by studying behaviors of populations.  They are not "interventional" or "experimental" studies.  The latter will make a change and measure results, often comparing results to a placebo.  Cause and effect relationships can be much more reliably established with experimental studies than with longitudinal studies. Also, variation was found in sex differences, which variant of the APOE gene one carries, and other variables.

Nevertheless, the results were intriguing.  

How might this work?  Vitamin D is involved in many biologic processes.  One suggestion is that it is involved with the clearance of beta amyloid in the brain.  Sort of like those monoclonal antibodies that have been in the news.

I will continue to take vitamin D supplements -- as recommended by my primary care provider.

You can read more about this study here.

Tuesday, September 12, 2023

Does pupil dilation during exercise predict effects on cognition?

There is a lot of interest in the eye as a window into the brain.  In a couple of weeks, we travel to Seattle for another installment in my participation on a study of the eye and Alzheimer's disease.  We said before that some scientists consider the eye to be an extension of the brain, and bad things happening in the brain might also be happening visibly in the eye.  So they are looking inside my eyes for evidence of the advance of Alzheimer's disease.

I came across another study of an association between the eye, the brain, and neurodegenerative disease.  This one found an association between pupil dilation during light exercise (yoga or walking on the treadmill) and cognitive improvement.  The researchers reported that they could associate the dilation of the eyes during light exercise with improvements in cognition.  The amount of change in pupil dilation could be associated with improved cognitive test scores.  They propose that the part of the brain controlling pupil dilation is also involved in cognition.  While this area of the brain is improving (during exercise), the pupils are dilating.

The researchers wanted to reassure people that even light exercise would improve their brain function. 

This is interesting, and it's in line with was learned by the HABIT study.  You will recall from Beating the Dementia Monster that Dr. Phatak was principal investigator for the Seattle site for the HABIT study, and she said that the only lifestyle change they measured that improved cognition was taking up yoga.  The HABIT study has since advanced from being a scientific study to being a regular program at the Mayo Clinic.

On the other hand, other research we discussed in Beating the Dementia Monster found that six or so hours a week (quite a lot for most people) was required to maximize the effect of exercise among patients with young onset Alzheimer's disease.  The study did not say how light or hard the exercise was.  And I've seen varying opinions on how hard exercise must be to produce results.  

In my case, I go kind of hard, but I'm really happy with my results.  Would my results be just as good if I went 2.5 mph on the treadmill with zero degree incline, rather than the 3.5 mph at the 15 degree incline that I do now?  There's only one way to find out, but I'm not willing to pursue it.



Sunday, September 3, 2023

Over 10,000 Sold!

This week, we passed a new milestone.  We have sold 10,000 copies of Beating the Dementia Monster!  Stacked one on top of another, that's a stack 1,500 feet high, or 0.28 miles if all were sold as paperback with the dimensions of the current edition.

That is both the first and second editions taken together, paperback and Kindle versions; English and Spanish editions.  Also, for a while the first edition was available through "Amazon Ultimate," where I only receive reports of page reads.  So I counted 200 page reads as one book sold.  And the first edition was a bit skinnier than the second edition and the Spanish edition.  So almost apples to apples, but not quite. 

When we started this project, I had no idea where it would lead.  Initial sales suggested I would get to 100 or so books and die there, but even that looked like an uphill slog.  I had some poor initial reviews that hurt sales.  Reviews are very important.  One negative review was from someone unhappy with the glue used to hold his book together, and another was from someone who simply didn't believe my story.  I don't know if either of them ever read the book.

But as time went on, the reviews got better, and sales rose.  I connected with some enthusiastic people in the medical field, and some in the Alzheimer's Association were supportive.  So the word got out.  Whenever a new group of people got excited about it, there would be a spike in sales.  I also engaged Brian Berni (in Italy) at Bookads.co, who is a real magician when it comes to working the Amazon algorithm. Today, we stand at 4.5 stars on Amazon from 270 ratings, which is just fine for a book like this.

If you are reading this blog post, you likely bought a copy of the book and may otherwise have contributed to the creation and popularity of the book.  So thank you very much!

Still Me; Accepting Alzheimer's Without Losing Yourself, by Rebecca S. Chopp, PhD

Back in October, I wrote about Dr. Rebecca Chopp who was writing a book on her experience with an Alzheimer's diagnosis .  I had stumbl...