Over 8,000 Sold!

When I was a boy, McDonald's was new, and I loved their hamburgers.  But the nearest location was 12 miles away, and we went there rarely.  On the sign over the building it said "Over 1 million sold!"  Later they changed it to "Over 2 million sold!," and after that, 3 million.  Later I saw that they had modified the sign to make it easier to change the number.  Eventually it said "millions sold" and now over a billion sold.

So two weeks ago we reached "Over 8,000 sold" of Beating the Dementia Monster.  That includes the first edition that we launched in February of 2018 and the second edition that we launched in July 2020.

When we launched the second edition, we were initially selling about 25 copies a day as a consequence of advertising campaigns on Amazon.  But during the pandemic, Amazon changed their advertising policies to prohibit advertising any book that claimed to tell how to treat a disease.  So more recently we've been selling about 3 copies a day, although some days we don't sell any at all.  Nevertheless, they are selling, and I get encouraging mail from people who believe they've been helped by my story.  And we have 4.5 stars on Amazon, which is respectable.

This is very gratifying to me.  So all of you who have bought our book, especially if you have given us favorable feedback on Amazon and other review sites, thank you so very, very much!

Insomnia and sleep meds ... my adventure

We've written before about my challenges with insomnia.  Except for three days when I had covid, I hadn't slept the whole night through since early 2020.  I've been following all of the advice on sleep hygiene and meditating, but to no avail.  Until recently, anyway.  Good sleep is a tool from The Dementia Toolkit, and it's probably the second most important factor in Alzheimer's disease behind aerobic exercise.

Insomnia is not new to me, but until 2021, it had never been that I would always wake up in the middle of the night and be unable to get back to sleep.  When I was in my 50s, I tried zolpedim (Ambien) on a few occasions, but then saw some scary stories about what could go wrong with it.  It was known to be habit forming, and I read somewhere that it prevented you from going into the "deep sleep" phase of sleep.  As we discussed in Beating the Dementia Monster, this is the phase most important for preventing or slowing Alzheimer's disease.  To minimize the risk of becoming dependent on zolpedim, I cut the pills in half and only used it rarely.  And then, for most of my 60s, insomnia seemed to be less of a problem, and I didn't use zolpedim at all (or so I recall).

But that all changed in my late 60s and into my 70s.  My neurologist (200 miles away) suggested that my primary care provider prescribe trazadone, but I didn't want to go the drug route.  When I mentioned the neurologist's suggestion to my PCP, he expressed hesitation about any medication for sleep at all.

My sleep doctor was less hesitant, and in early 2021 he prescribed doxepin, which he preferred over trazadone.  The very first time I took it, I knew we weren't going to get along.  I was already having trouble with balance, but this threw off my balance completely.  I also read that doxepin is bad for Alzheimer's disease, and my neurologist was horrified when I told her I had used it.

So my sleep doctor went ahead and prescribed trazadone, but I didn't get along with that either.  It didn't seem to help much, it seemed to disturb my balance, and it gave me a rash on my face.  Doxepin and trazadone are both antidepressants that promote sleep when given in low doses.

Next stop was ramelteon.  Ramelteon, like zolpedim, is classified as a hypnotic.  You can also think of it as a "super-meletonin," because it binds to all of the same receptors as melatonin, but more effectively.  What ramelteon and melatonin do is signal the entire body that it's dark outside.  

That's all they do.  Melatonin is not truly a sleep hormone, it simply signals the body on what time of day (and night) it is.  The hope is that the brain will take a cue that it's time to go to sleep because it's dark.  But both my doctor and Professor Matthew Walker say that melatonin is simply an effective placebo.  (But it never worked for me at all.)

Ramelteon, however, is not a placebo.  It's supposed to help you get to sleep quickly, but it's said not to keep you asleep.  Which was true for me.  But I wasn't having trouble getting to sleep, I was having trouble staying asleep.  And, while I did continue to wake up at about 1:00 a.m. every night, it also caused me to start falling asleep the next day.  Even when I was driving a car!  So when I experienced that, I stopped taking it immediately.  

All of the drugs I've tried included warnings about causing depression.  Ramelteon is the only one that did with me, although my depression experience was mild.  That was another reason for me to give up on ramelteon. 

Which brings us to suvorexant, or Belsomra.  My sleep doctor gave me a medium dose (10mg) sample of it, and I fell in love with it immediately.  I knew already that the FDA had conducted clinical trials specifically for Alzheimer's disease patients, and found that this was the only sleep medication that they would approve for them.

I read the clinical trial results on the FDA's web site which supported what I had read before.  At least according to the trial reports, it is not habit forming and continues to be effective after extended use.  (I'm not sure they followed the study subjects long enough to prove that.)  It was also shown not to affect the balance of patients taking it.

My insurance company didn't seem to agree with the part about it not creating a dependency.  They allowed me only a 30 day supply in 2021, which I used sparingly.  But my doctor doesn't think that's a problem and has gotten the insurance company to allow me to have access to a bigger supply.

There are many review forums for this drug, and I've scoured them for as many user experiences as I can find.  One thing I found is that, unlike me, a lot of people don't have a very good experience with it.  Some find it simply ineffective (a couple of times it didn't work for me too), some reported bad dreams, some reported somnambulism (sleep walking).  Some reported a fear that it would lose effectiveness with extended use, but I didn't see a report of this actually happening.  And I didn't see anyone report that it created a dependence.  

My big takeaway from reading the reports is that it seems to affect people differently.  For me, I get to sleep quickly enough, and I usually sleep all night.  If I wake up, I can usually get back to sleep easily.  And I also feel that I sleep more deeply, and I am more rested the next day.  I still dream, but no differently than when not taking it.  I normally take it one night and then skip it for the next two nights.  I find that I usually sleep well the first night when I skip it.  Sometimes (not always) I sleep better than usual the night after that as well. 

Will I develop a tolerance for it?  So far, there's no evidence of that.  So far, life is so much better than before I began using suvorexant.

And another MAB bites the dust.

Using monoclonal antibodies to eat up amyloid plaques in the Alzheimer brain continues to be an important focus of Alzheimer's research.  Aduhelm/aducanumab traveled a rocky road to get to a tentative and controversial FDA approval.  While approved for use, it's best to view its current use as a continued clinical trial. Lecanemab/BAN2401, on the other hand, is still in a phase 3 clinical trial, and (as we said earlier) is looking more promising.  Nevertheless, there are naysayers who contend that, long term, the monoclonal antibody is the wrong horse to bet on.  (You know them by the "mab" on the end of their names.)

This morning, I received news from my friend Mike about the failure of another mab -- gantenerumab.  It made its way to a phase 3 clinical trial but failed to significantly impede the progress of the disease.  So its sponsor, Roche, is giving up on it.  You can read more here.

For my money, this and other failures and weaknesses of the mabs indicates that researchers should be looking harder at other ways of treating the disease that we have discussed.  It's not clear that removing amyloid plaques from the brain does more than slow progress of the disease; it's not a cure.  (Of course, significant slowing of the disease is still a blessing to a family struggling with it.)

What other ways?  We've written about the possible role of gum disease in initiation and progress of the disease.  Research continues on that.  We also wrote about research on a vaccine approach to dealing with it.  

There's still a lot going on in the world of Alzheimer's research, but it's complicated by what an incredibly complex and poorly understood disease this is!

Perils of the Plant-Based Diet

In early September, Amy and I visited Maui.  While there, I was stricken by a very nasty kidney stone.  I've never had a kidney stone before, and I was slow to realize what was going on.  My son took me to a doc-in-the-box, where they treated me with a muscle relaxant and lots of ibuprofen.  The symptoms faded over then next week, and I assumed I was done with it.  

In mid-October, I went for my annual visit with my urologist, and I told him what had happened.  While I was free of symptoms, he thought it best that I have an ultrasound and x-ray to see if there weren't other stones forming.  So I went yesterday for both.  They found a stone in my right kidney that is, according to the x-ray, 13mm x 15mm.  I haven't spoken with my urologist about this yet, but if YouTube is right, a stone that size requires surgery of some kind.

When I discussed the Maui kidney stone with my urologist, I wondered what causes kidney stones, and why I should be getting one now.  One likely possibility is that, in implementing the MIND diet, I have added a lot of spinach to what I eat.  Spinach is high in oxalates, which cause kidney stones.  When I look at the material he gave me on kidney stones, I've become convinced that I need to cut back on spinach.  I can make up the difference with broccoli and other vegetables.

The material suggested that oxalate is in so many foods, that you can't just cut it out.  But I should go light on the particularly high oxalate foods.  Unfortunately, many of these show up in the brain-healthy diets, including mine -- spinach, of course, but notably nuts, beans, and chocolate. 

I hope to see my urologist soon to review the imaging results.  Hopefully he'll have some more suggestions for me.

It's Alzheimer's disease awareness month

Or is it?  It depends on what country you live in.  For the United States, it's November.  Here is President Biden's declaration that he just signed on Monday.  But September is World Alzheimer's Month, and September 21 is World Alzheimer's Day.  And then June is Alzheimer's and Brain Awareness Month.  

Of course, there is a multi-part message to get out, and we want to bring attention to it.  What are the message's parts?

- Alzheimer's is a deadly disease that strikes older people - the sixth leading cause of death in the United States.

- We don't understand the disease, so research is needed.

- There is no cure for the disease, so more research is needed.

- Families affected by the disease need support.

- Fully forty percent of all cases are preventable through lifestyle changes. 

- The course of the disease in many who are already affected can be significantly moderated through lifestyle changes.

Spread the word!