My Experience with Treatment for Dementia (Alzheimer’s)

Loss of mind is terrifying.

In the past few years I had the experience of a colleague and friend with signs of dementia. It became clear to me, although a physician probably wouldn’t diagnose it. The symptoms were:

• A pattern of nearly invariable misunderstanding of papers — inversion of the meaning.
• This colleague insisted on using a mini-laptop with a screen that was nearly impossible to read.
• Instead of one phone, there were two, in case one got lost for a while, and to confuse the Chinese. The “desktop” on these phones was such a mess it was hard for me to use them.
• There were glib confabulations, which taken one-by-one might not be noticed.
• Paranoia. The paranoia came out after a while. This is a common symptom used to explain or justify what is happening. The Chinese were spying through the smart TV set. They were messing with the cell phones.
• Meltdowns. For example, at an automated gas pump, the program changed to ask a new question. This caused a meltdown with yelling because the pump was broken. Help was required to past it.
• And there was a month of working in the same room on a document. Lots of apparently intelligent questions, some repeated — but people do this sometimes. At the end, though, after all that, and appearing to be industrious, the product was… nothing. Could not string two sentences together to capture any of a month’s conversation.

Shock. This last was a huge shock, but one I was probably preparing for unconsciously. One doesn’t want to look straight on at a friend falling apart. It’s like dealing with alcoholism that way. I made excuses for things. But when I saw the results of a month, then it all fell in — I couldn’t stay in denial. After this, came some confabulations that were fantastical. We talked. My friend admitted to knowing, and to being terrified.

We dove into finding out what could be done. Pretty quickly, the 40 Hz light and sound became a daily mainstay. My friend did hyperbaric oxygen treatments, 25 of them at 1.4 bar of ppO2, minimum 3 times per week.

Vitamins and supplements seemed to help.

Vitamin A resulted in quick healing of a sore on a hand, which suggests a degree of probable deficiency. A supplement of 1000 IU per day of vitamin A was taken most days, after a quick 2 days at 10,000 IU.

Correcting sub-optimal vitamin A should have a positive effect on the immune system, so there is some theoretical justification for a possible effect on Alzheimer’s.

Vitamin D was started at 5000 IU per day, which resulted in a stable level at around 65 ng/ml. That’s a good level, although not optimum for disease resistance —disease resistance optimum level is 95–100 ng/ml.

Note that there is a “rule of thumb” for adults that each 1,000 IU of vitamin D increases blood level by about 10 ng/ml. Most people get some vitamin D, enough to prevent extreme deficiency, from milk and a bit of sun. A sun-worshipper who gets torso tanning, can generate on the order of 3000–10,000 IU per day of exposure. There are very rare cases of mild overdose of vitamin D in people who have taken high doses (10,000 IU per day and up) who then go on vacation and get a lot of sun. But most Americans and Australians these days have quite low vitamin D from sun exposure. A quite small adult will get a bit higher blood levels than the rule of thumb, and a large one will be a bit lower. But it’s good enough for most people. (Hafthor Bjornsson who weighs 400 lbs with a six-pack is probably an outlier.)

Based on this rule of thumb, the vitamin D blood level at the start was probably in the 8–15 ng/ml range. That is much too low.

Vitamin D is essential for proper operation of the immune system.

B-complex Taking a B-50, 3 times per day improved quite a few things, although urine color caused complaints. There had been a long-standing problem with pathologically low cortisol, and cortisol normalized into the bottom tertile of normal. My friend experienced this as feeling much better. The object here was to ensure that B-vitamins were saturated all day. The dose could have been half or 1/4 of that per dose taken. However, we didn’t find a dose in the 10–15 range. And, B-complex won’t hurt you, plus I remembered older surveys of contents and in the USA quantities of claimed B-vitamins varied quite a lot. The only vitamins in that set of assays that were right on the money with what they claimed, were made in Germany for sale in Germany.

Vitamin C A simple 500 mg per day was started.

DMAE at 260 mg/day seemed to help fairly quickly.

Diet changed to include more variety of foods. My friend and colleague had a long standing gluten intolerance that was very severe. This included hives on hands after touching gluten sources. Unfortunately, that cuts out a lot of prepared foods, and this problem led to a tendency to cling to a relative few foods that were known to be ok. Having such an extreme reaction to a food is hard to live with, and many people don’t take it seriously.

Vegetables, fresh salad, a variety of chicken, fish, shrimp, omelettes, and some steak became mainstays. A bit more fruit is eaten, but my friend doesn’t like it. Not a big deal with the fresh vegetables. We let this one go.

Exercise was increased after the first set of hyperbaric oxygen treatments. A gym membership was started, and regular sessions with a physical therapist helped. An odd gait had developed in the year previous, which is not uncommon with dementia, although it could also have been from a mini-stroke.

Results — We didn’t expect a great deal. I had to tell my friend that based on the literature, it seemed unlikely we could do anything more than slow things down. However, what occurred is beyond that.

• Paranoia ended. No more blaming the Chinese for interfering and spying.
• Adopted using a laptop with a large screen that is easy to read.
• No known meltdowns in almost a year.
• Has been able to solve simple problems although still scared to try. The first big one was that the front door had an electronic lock and the battery needed changing. After procrastinating for a week, the lock was taken apart, battery replaced, put back together and it all works. This may not seem like much, but it would have caused a meltdown before.
• Able to remember new things. For instance, changed a password and then after forgetting it, remembered it after a night’s sleep.
• Got into sudoku and word games instead of avoiding challenges.

Now let me talk about the problems that remain.

What is lost is gone. When improvements began to become visible, my basic expectation was that vocabulary would come back, and my friend would “just get better” etc.. Except for reasoning and being able to keep order of things, “getting better” hasn’t “just happened”. What has come back though, is the ability to form new memories, and remember them — this “just happened”. It’s not perfect, but it’s definitely better. Vocabulary has definitely improved, and perhaps it is easier to relearn words, but doing so takes some work. Another thing that seemed to “just happen” was a decline and then end of the paranoia. We did discuss this paranoia a fair amount. I tried to be patient rather than confrontational after the initial shock. (Yes, when I “got it” I did confront about the issue. In that context it worked. But after that, I practiced patience.)

When I thought about it, this makes sense. In Alzheimer’s dementia, cells actually die, and cells are the bearers of memory. If that process stops, and the remaining cells improve so that they can make new connections again, this is a victory, but it means that there is work to get things back.

Future — What the future holds is unknown. The plan is to do a course of 25 hyperbaric sessions every 4–6 months. Vitamins and supplements are “steady as she goes Mr. Sulu”. Exercise is the same.

DBNF stimulants are something we are looking at. At this point, that is 7–8-DBF.

Is a clinical trial possible to get into? We shall see.