Tuesday, October 15, 2024

The first Alzheimer's survivor is out there. And the second. And the third...

As you know, I support the work of the Alzheimer’s Association.   They do wonderful things to support families in their terrible struggles with dementia, and, behind the governments of the US and China, they are the third largest sponsor of Alzheimer’s research in the world. 

That being said, I have been thinking recently about their fundraising hook, “The first survivor of Alzheimer’s is out there…”  Hey, I’m a survivor of Alzheimer’s disease, and I’m not the first one.  From 2015 through 2018, the evidence of my disease was as strong as it could be, but the symptoms are now apparently behind me.  So, I count myself as a survivor of the disease. 

I didn’t make up the “Dementia Toolkit” on my own.  It’s based on the experience of others who overcame the disease through lifestyle changes.  Others had similar experiences, such as those involved in the FINGER study and the subjects of Dr. Dean Ornish’s work.  In Beating the Dementia Monster, we discussed the success Dr. Dale Bredesen has had, although I’m skeptical of some features of his program outside of lifestyle changes.  So, I’m not alone.  We don’t know who that first survivor was, but he or she has been around for a while. 

What has me thinking about this is the book, Blind Spots.  I’ve been considering it along with what RFK Jr. has been saying about chronic diseases.  A way of looking at the practice of medicine is to identify an ailment, name it, and search for a medication that will cure it. 

For example, I remember when polio terrified parents, as many thousands of children succumbed to it.  I remember the rows of iron lungs working to keep so many four- and five-year-olds alive.  Today, I know a couple of people who are living in wheel chairs or are otherwise physically impaired due to having the disease in the 1950s.  The March of Dimes raised the money to do the research that led first to the Salk vaccine and then to the Sabine vaccine. Many lives were saved. 

But RFK Jr’s point is that, for the chronic diseases presently advancing in the culture, just inventing pills to fix things isn’t the right approach.  Most of the chronic diseases—heart disease, high blood pressure, type 2 diabetes, Alzheimer’s disease, some cancers, etc.—are a consequence of poor lifestyle choices.  We call Alzheimer’s disease “type 3 diabetes,” because the same factors that drive metabolic syndrome—leading to diseases like type 2 diabetes—also drive Alzheimer’s disease.  You may invent a pill or come up with an infusion to help control symptoms, but the disease itself is a consequence of lifestyle choices, and pharmaceutical treatments here are not cures.

After speaking with quite a few knowledgeable people, it appears to me that no one believes there will ever be an outright pharmaceutical cure for Alzheimer’s disease.  Instead, there will ultimately be a cocktail of medications that, coupled with appropriate regimens of exercise, diet, sleep, and social activity, will get us as close as possible to a “cure.” 

Regarding Blind Spots, Dr. Makary’s point is that the medical profession gets stuck on certain paradigms, and it is too slow to recognize it’s not on the best path.  My take is that, when all the focus is on coming up with a pharmaceutical solution, the best path forward—lifestyle change—is overlooked. 

Now, this ain’t easy.  I’ve had a number of people approach me for help with their issues on cognitive decline.  Usually, when someone is concerned enough about cognitive issues to seek help, they probably are actually dealing with disease, not the consequences of normal aging.  But the people who come to me are usually spouses of people with issues. 

Of course, the first thing I do is tell them I’m not a doctor, and I recommend specific specialists I trust. Nevertheless, I do explain my experience and suggest that, in addition to seeing a real doctor, they adjust their lifestyle.  But when I get to that part, they usually lose interest.  Get daily exercise?  Cut out desserts?  Stop eating processed foods?  For many people, these are non-starters. 

Every morning when I wake up, I can’t believe how wonderful my life became after I got control of my lifestyle.  Beyond that, the reason I get up is to share my experience with those who could benefit from it, even if not everyone is willing to listen.

2 comments:

  1. You are such an inspiration! I'm sure you have answered this question before but I am new to the blog. I am curious if you have the APOE4 gene (one or two copies). Thanks so much for your response and I am so happy to see your progress!

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    1. Thanks so much for you kind words. The answer is that I do not carry the APOE4 gene. However, as time goes on, they have identified at least 30 genes that can play some role or another in the development of the disease. I don't know about any of these others. Regardless of my genetic makeup, my guess is that the shingles virus (herpes simplex) is the cause of my own disease. They have identified a strong correlation between occurrence of the disease and a history of shingles. I had shingles three times.

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The first Alzheimer's survivor is out there. And the second. And the third...

As you know, I support the work of the Alzheimer’s Association.   They do wonderful things to support families in their terrible struggles w...