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Thursday, January 2. 2020
Everybody knows that academic politics are ugly. Alzheimer's is uglier than that, and there is lots of money available too.
The problem with searches for cures is that the #1 risk factor for Alheimer's is genetic, via the maternal line. If your Mom has it, your odds for it are worrying but not certain. The second risk factor is being overweight. The viral idea doesn't really seem to fit with the genetic. Maybe they are synergistic? Who knows?
Genetic testing for Alheimer's risk is available at any age. With certain genetic conformations, your risk is almost certain. Bad news.
From all I have read about it (not an expert at all), the brain rot begins long (years, even decades) before there are obvious clinical symptoms other than, maybe, being less energetic, social, and driven. My amateur guess is that the brain tangles and brain shrinkage are not causal, but results of a genetic brain rot, a sort of programmed obsolescence.
"Cures" for genetically-weighted diseases are elusive, of course, because they are baked in the cake. Unbaking a cake is a tough challenge.
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Glad my mother lived to 103 and had her marbles all along.
I wondered as I had an experience that caused me to lose interest in academic research. I did a paper analyzing outcomes of dialysis results using the Medicare claims database. It was 1995 and the reviewers at NIH had never heard of the method. It was subsequently widely used in outcomes research. Too soon. All dialysis patients are on Medicare after 6 months and 100% followup.
The only way to cure Alzheimer's is to cure aging in general. In addition to Aubrey de Grey's SENS Foundation, there are a fair number of bio-engineering start-ups working on the problem. As Glenn Reynolds would say, "faster please".
While there are good medicos out there, there are also pikers. My Mother, as an example, had some senile dementia. Guess what they labeled it as? You got it! Went on the record as Alzheimer's, but it was NOT Alzheimers by any measurable test such as the 'fold a piece of paper', put it on the floor, pick it up.... She was fine on my visit in May, when I went back to visit (sadly, 2200 miles away...) in August, she had 'lost' her short term memory. Ask her anything that happened previous to May and she nailed it.
But the point is, I believe that because it is the shiny new 'jump on the medical bandwagon' disease, everything that has to do with brain dysfunction gets labeled as Alzheimer's.
As to 'ugliness'. You do, of course, remember the diet wars waged in the 60's and the food pyramid. Diabetes and the 'eat a balanced diet' BS advise (still on that freaking criminal site), heart disease is 'caused' by cholesterol - oh yeah, the BAD cholesterol. Sigh... Just step off the track onto the third rail and you are now out o business. You could have your medical license removed for giving 'bad advice'. My heart doctor has a poster in his office concerning the dangers of cholesterol. Between him and me, however, he is pretty convinced it is BS, but he has to tow the company line. Company line? Few docs run their own practices these days.
Got long, sorry. Didn't have time to shorten. But my point is clear.
My sister is currently finding out how difficult it is to be the full time caretaker of someone with Alzheimer's. My brother-in -law is getting worse by the day with an inherited type evidentially coming from two separate genes. His mother had the same thing for years. One of their children has at least one of the genes and I don't know if the other kids have taken the genetic tests to find out. Pretty scary to know what will happen in the future. He also has a type of Parkinsonism that goes with the Alzheimer's. It has taken them years of testing and re testing to come to this latest conclusion. My sister is doing as well as can be expected for the stress level but it is beginning to wear on her. We can go out to eat with them as we know what to expect. Right now he is going into the wandering stage and uninhibited behavior stage. Their future is not very happy right now. Unfortunately or not his health seems to be good right now so this may be a very long road indeed. The film "Still Alice" is a sad but instructive film.
It is a very hard road. "When pain is to be borne, a little courage helps more than much knowledge, a little human sympathy more than much courage, and the least tincture of the love of God more than all.”
― C.S. Lewis, The Problem of Pain
re Cures" for genetically-weighted diseases are elusive, of course, because they are baked in the cake. Unbaking a cake is a tough challenge.
That seems like a good way to explain genetically weighted diseases in a nutshell. I had not thought of them along those lines before.
The rest of your comments were interesting as well.
Thanks for taking the time to comment.
Thank you, Dr Bliss, for taking the time to answer my question. As mentioned, I've followed the research for several decades, always thinking surely there will be an effective treatment by the time my children start entering their 50s. In the case of my late husband's family, onset and death occurred at a younger age with each subsequent generation. The pattern, left me to wonder if the defect was autosomal dominant. A couple of years ago, there was a flurry of promising drugs that failed and that is when the lack of progress really hit me. The only light at the end of my tunnel, is that my own family tree is free of Alzheimer's. I can only hope that my genetics will make a difference for some of my children.
Best wishes to anyone dealing with this.
THE FACT THAT ONSET IS SO LONG BEFORE SYMPTOMS EMERGE REALLY COMPLICATES THE SEARCH FOR A CURE OR EVEN A SLOWING TREATMENT. YOU HAVE TO IDENTIFY CANDIDATES FOR STUDIES LONG BEFORE THEY HAVE SYMPTOMS AND THEN FOLLOW THEM FOR A DECADE.
I'm living with a spouse with (undiagnosed) Fronto-temporal dementia-behavioral variant and what were quirks and occasional blips in behavior 25 years ago, are now full blown obsession/compulsion and big behavior problems.
Having grown up with two grandmothers in the house with dementia and mental issues, this is much worse.
I am taking care of my husband who has late onset, severe Alzheimer’s. He is the 6th child of 10 and the 4th male to get it. He has one copy of the relevant gene. The 4 brothers who had/have it were in the best shape - active, not overweight. Those who did not get it and those showing no signs are overweight, inactive.
Mother did not have it and neither did father. They died of heart disease and stroke old enough to have shown the signs. I believe the relevant gene is a mutation. We tried Aracept at one point but there was no improvement.
So, overweight, inactive, mother who had it?. I say we know very little about cause at this point. The science is definitely not settled and the article cited about the “cabal” sounds like a lot of science these days. Money for research concentrated in a few hands and refusal b6 those few to re-evaluate.
Anyone in the Washington DC area should look into Insight Memory Care Center - a wonderful day program for people dementia. Saved my life.
"Schizophrenia" is a catch-all phrase, which wrongly overgeneralizes the specific illness that each person who is suffering from mental illness may have. There are a number of symptoms which indicate mental illness; such as loss of memory, confusion, behavioral problems, anger, sadness, etc. Right now, these are all just lumped together.
In India, the use of natural drugs is much more widely accepted than it is in the United States. Indian doctors have, of course, been dealing with mental illness for a long time. If someone appears to be suffering from absence of mind, weakness of memory, and confusion, then the Indian Doctor will prescribe a drug called "Kreosotum". It's commonly sold as a derivative of coal tar. But there was a man named Dr. Meredith, who claimed that the only good Kreosotum is fresh- made heavy distillate of hard green wood. Strangely, homeopathycenter.org doesn't even list Kreosotum as a treatment for mental illness, even though it is used for that purpose all over India.
I think we can all appreciate the power of the band wagon effect even over very smart, disciplined scientists. It seems reasonable that anyone would have a lot of ego involvement and emotional investment in their work product whatever their occupation. We are so enmeshed in our environment and peers, it's hard for anyone to step outside the box, even though that's what scientists are paid to do. Up until recently, I had assumed, the financial incentives would be sufficient to drive fresh ideas and innovation, but maybe not if access to the financial resources is too centralized.
Even a modestly effective Alzheimer's treatment would be a Bonanza.