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The Arrow #258 Keto and Alzheimer's

Greetings all. I’ve been working on a post to go out today, then I read this article that appeared in the Wall Street Journal a couple of days ago, though I just read it today. It’s sad and infuriating in a way, and it just won’t let me alone.

Here is how it starts:

I had heard the adage many times: Man plans, God laughs.

I just never imagined it would apply to my retirement.

Ten years ago, my wife, Karen, and I walked away from full-time work. Just four years later, Karen was diagnosed with Alzheimer’s. Within a year, I was a full-time caregiver, a role I still play today. And the retirement we had spent so much time planning and working toward ground to a halt.

The irony: I had worked for more than three decades as a reporter and editor for The Wall Street Journal—and had spent my final years at the paper writing columns and editing articles about retirement and retirement planning. I even co-wrote a book about later life and “how to plan it, live it and enjoy it,” as the subtitle promised.

So, when I left the Journal and Karen retired from teaching, we were about as confident as any new retirees could be. We had our blueprint. We had our nest egg. We had our health. All that was left was to toast our good fortune and enjoy the ride.

Karen didn’t have a slowly progressive version of Alzheimer’s disease; She had the full blown dose.

To start, and there’s no need to sugarcoat this, our days revolve almost entirely around Karen, who needs help with everything: eating, dressing, washing, using the bathroom, taking her medicine, brushing her teeth, combing her hair, getting in and out of bed—the list goes on. Saddest of all, Karen rarely speaks any longer. Alzheimer’s has robbed me and my best friend of conversation.

All the above is set against a backdrop of paranoia, a common feature of this type of dementia. At times, Karen thinks “bad people” are coming to get her and, as such, insists she must leave our house. Which is what she did one cold evening two years ago, slipping out the back door while I was on the phone. Almost three terrifying hours later, the police found her, huddled on a neighbor’s porch. (We now have an alarm system that alerts me whenever an exterior door is opened.)

By any measure, this is a terrible situation. And it’s no cake walk for Karen’s husband, who is her caregiver.

Fatigue is far and away my biggest problem. I am always tired, primarily from helping Karen navigate each day, but also from losing sleep over what lies ahead. Namely: How, and how quickly, will her symptoms worsen? (And they will worsen. That’s how this illness works.) Can I continue to care for her on my own? (Yes, I can hire help, but I have this notion—part principled, part foolish—that this task is my responsibility and mine alone.) Will I need, at some point, to move Karen to a memory-care facility? (Or should I do so now? A good friend thinks Karen could benefit today from the specialized care in such settings.) And how will our nest egg hold up when it comes to paying for such services? (The cost for quality care in our area starts at about $12,000 a month.)

Worse, these anxieties, at times, are salted with moments of anger and self-pity. I recognize, of course, that life isn’t fair and that many families are grappling with circumstances far crueler than ours. That said, I can’t help but wonder about what might have been: the classes and lectures we had hoped to attend, the volunteer work we had planned to pursue, the trips we had wanted to take.

I debated long and hard about showing the picture of Karen below. You can see that one and more if you click the link above and open the article.

I am certainly not trying to fat shame Karen in any way, but, with most people, obesity comes at a price. Sometimes a great price.

It’s obvious from the photo above and others in the article that Karen has upper body obesity, the worst kind in terms of health risk. She probably has elevated glucose, impaired insulin signaling, widespread mitochondrial damage, and doubtless a host of other issues. I don’t know what kind of diet Karen has been following, but I suspect it’s the same one she was following before she came down with Alzheimer’s.

I know beyond the shadow of a doubt that if Karen could lose a substantial amount of weight, she would do better. She might not get rid of her Alzheimer’s, but might at least temper it. I know she would feel better, and I’m sure her husband would have an easier time caring for her.

There aren’t a lot of studies looking at ketogenic diets as treatments for Alzheimer’s, but there are a few. And there is a lot of anecdotal data showing improvement in the disorder.

A year or so ago, I watched a 3+ hour interview of Chris Palmer on the Andrew Huberman’s show. Chris is a psychiatrist at Harvard, and he stumbled onto the ketogenic diet. He’s found that it works brilliantly for many serious brain disorders: bipolar disorder, schizophrenia, paranoia, and the like. The talk turned to Alzheimer’s, and here’s what he had to say.

I’ve cued it to 02:10:16. Sometimes this platform takes you right there, and other times it starts at the start. If it starts at the start, just scroll forward to 02:10:16. (I would encourage you to watch the entire three hour video, especially if you have any interest or any family members with brain disorders.)

Basically, the crux of the matter was revealed when Huberman asked why there were not more studies since the small ones out there and the anecdotal data showed promise. Dr. Palmer’s answer floored me. He said that researchers at Johns Hopkins decided to do a large randomized controlled trial to see if the ketogenic diet bested a control diet in the improvement of cognitive function in Alzheimer’s patients.

The researchers interviewed 1,300+ subjects interested in being a part of the study. In the end, only 27 people signed up to participate. And only 14 completed the study. But those who did complete the study had improvement in cognition.

The problem was that given that data—even though those who did the program improved—the funders for a larger study basically said, What’s the point. Even it it works, people aren’t interested in doing it. So we would be wasting our money on the study.

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I would have been shocked when I heard that, but I had already encountered a similar situation I posted about on my blog almost 20 years ago.

Researchers initiated a small pilot study in which terminal cancer patients were recruited to try a ketogenic diet. These weren’t just cancer patients grabbed at random. The folks had been through chemotherapy, radiation, and/or surgery. They were on their last legs and basically sent home or to hospice to die.

A small group of these patients took to the ketogenic diet, and their results were pretty spectacular. According to the report:

The good news is that for five patients who were able to endure three months of carb-free eating, the results were positive: the patients stayed alive, their physical condition stabilized or improved and their tumors slowed or stopped growing, or shrunk.

What about the others? The ones who didn’t stick to the keto diet?

 

[Some] dropped out because they found it hard to stick to the no-sweets diet: “We didn’t expect this to be such a big problem, but a considerable number of patients left the study because they were unable or unwilling to renounce soft drinks, chocolate and so on.”

I find this to be absolutely mind boggling. It’s difficult for me to come to grips with the fact that people would prefer carbs to better health, or, in this case, even life.

I would think the man who is the caretaker of the lady who kicked off this post today would jump at the chance for better days for his wife by starting her on a ketogenic diet. But based on these other studies, perhaps not.

It just seems insane to me that it isn’t offered. Maybe not enough Alzheimer’s caregivers know about it; I don’t know.

But what I do know is the Wall Street Journal article broke my heart.

That’s about it for this week. Keep in good cheer, and I’ll be back soon.

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This newsletter is for informational and educational purposes only. It is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice.

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