Slow News and an Update

I have been assiduously scanning my favorite medical news feeds for news on Alzheimer's disease research.  But there hasn't been much lately, at least not anything I can condense into something my Mom would understand.  That's what I do.  When I find something, I see if I can make it something she can understand and enjoy, and then I post it.  She's pretty smart, so I'm not dumbing it down. But things have been slow lately.  The most recent real news was about aducanumab, but that's getting to be old news.

I recently scheduled my next psychometric testing.  It will be mid-June at Harborview in Seattle.  You will recall that I've been tested annually since 2015, but my neurologist had me take a break in 2019.  My test scores were very favorable year after year, and they wanted to assess whether the practice effect might be a factor.  Or that's what I inferred from what my neurologist said.  I am, of course, eager to see what the test finds.

I posted earlier that I had a subjective sense that I had lost some ground beginning in April 2019.  I had repeated trouble remembering to perform simple routine tasks, like locking the car door when I parked.  I also experienced the return of the episodes of mild depression that had occurred several times per week in 2015 and 2016.  While they only occurred once or twice a month in 2019, it was still disturbing to have them back at all.  My neurologist attributed the regression to problems with sleep and encouraged me to do what I had to do to improve my sleep.  So I've been doing what I know how to do.

One thing I know how to do is intermittent fasting.  I've settled into a regular 18 hour fast, and I feel quite well about it.  I said before that the arthritis in my neck seems relieved, but I have a lot of other painful joints.  I will need to be tested by a professional to see where I'm at cognitively.  Subjectively, I believe that I may be back where I was before the April 2019 hiccup, but I can't say for sure.  I'm confident that I'm better than I was at the end of April.  I'm sleeping better than I was when I began intermittent fasting, but I don't know if there's an actual relationship between fasting and good sleep.  When I'm tested in June I'll have been intermittent fasting for five months, so we'll see if it's possible the fasting has improved my measured cognition.  There's research associating improvement in Alzheimer's disease with intermittent fasting, but I don't know how long it takes to make a difference.

The NY Times Weighs in on Intermittent Fasting ... and my Interim Report Card

Jane E. Brody, the Personal Health columnist for the NY Times recently posted an article in The Times on intermittent fasting, "The Benefits of Intermittent Fasting."  The original title was "Intermittent Fasting, Its Benefits and Risks," and she does make an effort to discuss risks.

Apparently, Brody was prompted to write the article by inquiries she received from people about intermittent fasting after they read the December 26 article in the New England Journal of Medicine.  We discussed the article on January 18.  She confesses that she was initially skeptical of fasting, and so she interviewed Mark P. Mattson, a neuroscientist at the National Institute on Aging and Johns Hopkins University School of Medicine.  Dr. Mattson is a strong proponent of intermittent fasting, and we discussed his perspective in our post of January 10.  The interview and the NEJM article appear to have persuaded her to take it seriously.

The NEJM article has certainly stirred a lot of interest!

Brody discusses something that has concerned me, and that is appropriateness for those at risk for eating disorders.  She was interested in this, because she struggled with eating disorders when she was younger.  (She acknowledges the risk, but doesn't have a prescription for these people fasting other than to say they should probably avoid it.) 

Like the NEJM article, Brody came down on a daily fast of 16 or more hours, rather than eating normally for five days and fasting two whole days (the 5:2 plan).  I've seen other doctors who say a 16 to 20 hour daily fast is best, depending on what condition you are trying to deal with, and plans like 5:2 are not a good idea.  Dr. Eric Berg breaks down what type of fasting is appropriate for which condition you want to address.  I was disappointed to hear him conclude that a full 20 hour fast is appropriate for Alzheimer's disease.  (Maybe I missed it, but I'm not sure how he found that out.)

After a bumpy start, I have settled into an 18 hour daily fast, occasionally going the full 20 hours.  As I mentioned before, I finish eating at 7 in the evening, and I don't eat again until 1 p.m. the next day.  This has not been terribly difficult, because I consume relatively few carbohydrates when I do eat, and I'm just not hungry when I get up in the morning.  The relatively low carbohydrate MIND diet prevents insulin spikes that encourage hunger.

I mentioned in our post of February 10 that I got new relief from arthritis pain in my neck when I started intermittent fasting, but I don't know if this is an actual connection or a coincidence.  Other arthritis pains seem to be lower but have not gone away.

But what about cognition?  Even subjectively, I can't say after this short time that there has been any improvement.  My cognition will be tested again at Harborview this summer for the first time since 2018.  I believe that, after four years of gradual improvement, I've had some erosion of cognition, beginning in April 2019.  It hasn't been dramatic, and only I have been able to notice it -- or perhaps, out of anxiety, imagine it.  So we'll see what happens this summer. 

Two More Go Down

After five years of testing, two more proposed Alzheimer's drugs have failed to improve cognition in test subjects.  This is according to an article in the AP.  The drugs are solanezumab by Eli Lilly & Co., and gantenerumab by Swiss drugmaker Roche and its U.S. subsidiary, Genentech.  (There's a system for coming up with these names, but good luck learning to pronounce them.)

This was not a big surprise, because the mode of action for both drugs is removal of amyloid beta from the brain, and this strategy hasn't lived up to earlier hopes.  Of course, aducanumab and BAN2401 may yet show the way to at least slow the advance of Alzheimer's, and this by removal of amyloids.  But solanezumab and gantenerumab are out of the running for that job.

According to the AP article, the tests involved about 200 test subjects carrying genes for younger onset Alzheimer's disease.  People carrying these genes are almost certain to develop the disease, perhaps in their 40s or 50s.  This form of the disease is also often called early onset Alzheimer's disease and familial Alzheimer's disease, but the Alzheimer's Association prefers younger onset Alzheimer's disease.  This is because "early onset" gets confused with "early stage." 

People carrying the genes for younger onset Alzheimer's disease are good test subjects, because you can be reasonably confident that stabilized cognition or failure to develop the disease are due to your drug, and not just chance. 

  

Beating the Dementia Monster, 2nd Edtion

I don't think I mentioned it before, but I have been working on a second edition of Beating the Dementia Monster for about two years.  I have had several people from the publishing world advising me, and the manuscript has now been reviewed by a neuropsychologist, a neurologist, an internist, and an official from the best known Alzheimer's advocacy organization.  (I'm avoiding saying their name.)  They all gave me very helpful comments. 

Currently the manuscript is in what will hopefully be two last reviews -- one from a medical school professor of neuropsychology and another review from one of her colleagues.  I'm hoping they'll complete their reviews in early March.  Once those reviews are completed, I have an editor who will do copy edit.  (Hopefully, they won't have any comments requiring major surgery.)  In parallel, I have a cover designer under contract who will hopefully take the cover "to the next level."

I had never tried to get Barnes and Noble or any big book store to carry the original book, thinking that they wouldn't carry a self-published book.  But then I saw a self-published book on someone's experience with dementia on the shelf at our local Barnes and Noble.  I asked the manager about getting my book on their shelves (the new edition), and she said they didn't have a problem with a self-published book.  In fact, she said I should come down and to a book-signing!  That would be great.  And perhaps local success could be magnified in other parts of their system.

So far, we've sold about 3,500 copies of Beating the Dementia Monster.  (I'm counting about 500 equivalent copies from Amazon Ultimate page reads.)  I've learned a lot from this, finding in particular that public appearances make a big difference.  So I've been fishing for these.  When I speak and have a video, I post them on my Dementia Monster YouTube channel. 

Even More on Intermittent Fasting

We wrote on January 10 and January 18 that I would be experimenting with more aggressive intermittent fasting than we had recommended in Beating the Dementia Monster.  In the book, we recommended fasting 12 hours between dinner and breakfast.  After reading the article in the December issue of The New England Journal of Medicine (NEJM), I decided to pursue this further. 

For the past month I have been fasting about 18 hours, rather than 12.  I have my last bite for the day at 7 p.m. and don't eat again until 1:00 p.m. the next day.

So, is my cognitive impairment going away?  It would be silly to say I can tell anything on my own after 1 month.  However, I will be tested again this summer, and I'll be (very) curious to see what happened to my cognition over the previous 24 months.

In the past, I've been tested at Harborview annually, the tests normally taking about two hours.  But I'd done so well in 2017 and 2018 that my neurologist decided I should take 2019 off from testing.  I went in to see her for a 2019 evaluation, but we omitted the neuropsychological testing. 

But I did clearly have some kind of hiccup on my cognition beginning the first week in April 2019.  This was my subjective assessment, but it was pretty clear to me that I was having trouble.  This continued for a few months, but seemed to bottom in late spring.  Things seemed to improve marginally after that (again, my very subjective assessment) but I seemed to stumble again in early 2020.  Nothing serious, but in April 2019, I couldn't remember to lock the car door no matter how hard I tried.  More recently, I find that I've put garbage in the recycle container.

While it's too early to see if intermittent fasting is helping my cognition, there is one thing that has gotten noticeably better.  And I didn't expect it.

The NEJM noted that an effect of intermittent fasting is to reduce inflammation.  This helps with Alzheimer's disease, because inflammation plays in important role in how the disease proceeds.  The article said that this effect will also help with arthritis.

I have troublesome arthritis in both my neck and my back.  This usually comes out at the gym when I start stretching to exercise.  It's a problem while driving when I want to look over my shoulder.  And then when I'm on an airplane and I want to look back to see if there's a line at the bathroom.

So after intermittent fasting for about three weeks, I was pleasantly surprised to find my neck pain had almost completely gone away.  Just a coincidence?  Will it come back?  Who knows.  But I'll take it.

When I talk to people about intermittent fasting they are usually horrified.  For one thing, we've been told "breakfast is the most important meal of the day!"  The breakfast cereal manufacturers have promoted this concept, but it has failed when tested scientifically.  It turns out that breakfast may be the most worthless meal of the day.  There's still plenty of debate about this, but the NEJM article and other reading I've done suggests to me that the breakfast paradigm is in the process of change.

But also, people worry about being hungry for so long.  All I can say is that, if you're on a diet that keeps carbohydrates low (like the Mediterranean, the DASH, or the MIND diets), you don't experience nearly as much hunger.  The insulin spike that follows the intake of carbohydrates increases your level of hunger, so suppressing intake of carbohydrates suppresses your hunger.  I won't try to tell you that you won't miss eating in the morning, but being on one of the recommended diets makes it a lot easier.

I don't intend to try the other forms of intermittent fasting that involve fasting for a whole day, twice per week.  But I do plan to continue on my current path for the foreseeable future.  I definitely want to see if I can perceive an influence on my cognitive test scores this summer -- likely early July.  

WTC Responders Are Developing Cognitive Impairment in their 50s

WTC responders went through a lot, and they continue to suffer the effects of chemical exposure and other consequences of their work.  These include cancer, respiratory disease, and PTSD.  According to an article in this week's ALZForum, this list now also includes people experiencing cognitive impairment in their 50s.  The article is "Do World Trade Center Responders Get Early Onset Plaques and Tangles?"

The answer to the question is "Yes."  But why, and is this Alzheimer's disease?

As far as the "why" goes, the authors point to exposures to known chemical agents that could cause inflammation in the brain.  Neuroinflammation is correlated with the Alzheimer's disease process.  Also, a significant number continue to suffer from PTSD which may cause changes in the brain that eventually lead to the famous amyloid plaques and tangles.

When the responders are subjected to cognitive testing, many show cognitive decline consistent with someone 20 years older.  So does that mean they are developing Alzheimer's disease?  Likely not, because the plaques and tangles, when imaged in PET scans, are distributed in areas of the brain that are not typical for Alzheimer's disease.

This topic is attracting a lot of attention, and there will be more research.  For the people affected, the future is uncertain.  No one knows if this is just a new form of Alzheimer's disease.  If it's not, no one knows if their cognitive impairment will continue just like Alzheimer's disease, or will it perhaps stop or even self-correct?  Pausing and even return to normal cognition sometimes happen when cognitive impairment has a cause other than Alzheimer's disease.

We will be curious to find out what future research discovers ... and if it yields help for people facing the consequences of their work.

I Spoke Recently -- See the Video

On January 19, I spoke at the Community Unitarian Universalist Church in Pasco, WA.  I was very nicely received, and they did a nice video of my talk.  You can see it by clicking here.