Anyone familiar with the prion connection to Alzheimer's disease, Parkinson's disease, Multiple System Atrophy, & Creutzfeldt-Jakob disease?

I have read about this before, but, I'm not aware of any concrete findings. Who knows where these amyloid seeds really come from. And why wouldn't healthcare workers and those who care for Alzheimers patients have high rates, since they handle a lot of bodily fluids caring for patients over the course of their career. I think there is a lot still to be learned.

I agree there is a lot to be learned. Health care workers usually wear gloves when handling bodily fluids and aren't exposed as much as are family members particularly spouses. I hope we can keep this thread going.

I am not familiar with the prion theory of dementia transmission. It really needs to be researched thoroughly, don't you think? It certainly fits the "epidemic" nature of the disease development now.

But dementia is not new. Why haven't cases in the past triggered epidemics?

I am familiar with the statistics that caregivers, especially spouses, have a higher rate of dementia than the general population. The prion theory would fit that. I also think that if you have one family member with dementia you are far more aware of symptoms and far more likely to seek treatment for another family member that starts to show symptoms.

I am happy to see all possibilities thoroughly explored.

There have been periods throughout history when diabetes looked like an epidemic, when certain populations have had very high rates of the disease. This has been a case of a population experiencing similar conditions, rather than the disease being transmitted from person to person.

Me too. I'm always trying to explore new information about this and other issues. The problem is that I don't think we are supposed to post links, so, we can't see what the poster is referring to on some of these studies. Feel free to PM them to me though, if you see one of interest.

NYDIL, Dr. Thomas Wiesniewski is familiar with autism families, too. He has some interesting theories, lots of lab research, and promising lines of testing that have yet to make it out of animal studies. I hope he has some opportunity of human testing, but it seems far away at this time. HOWEVER, I've also read that the statistic of 600% higher likelihood of spouses getting Alzheimer's is actually related to a higher diagnosis level - that you are looking for it knowing symptoms, not necessarily getting it from a spouse. He's working clinical studies with spider monkeys to check some of his findings, but he's been doing a lot of the Alz research actively since 2010. So far, it's all still in animal testing stages. We do know that some cases of CJ are transmissible by handling tissue. If prions are transmissible for autism purposes, we parents and siblings would all have it, too. The biggest factor that I've seen is that genetic weaknesses or flaws in DNA/RNA are damaged by prions and those flaws manifest in one of the most dramatic ways as protein deposits. If I hear more, I'll come back and post. The autism community is always looking for connections like these to explain why and possible cures or prevention. We're still looking....:(

I happened to be specifically interested in Vascular Dementia, since, that's what I have dealt with with my LO. I think that I overthink it though. I keep trying to figure out if I'm doing enough to protect myself. I've lost weight, started exercising, gotten my insulin levels in good control, blood pressure good, cholesterol excellent, eat right, etc. I see my doctor regularly and just got my blood work back and it's better than ever! I'm quite pleased, but, still....is it enough? Do we really have control over things like that?

I could not find any reference to "A statistic cited was that spouses of people with Alzheimer's are 600-percent more likely to also contract the disease." Can you provide the source for that statistic?

CJD - most cases are sporadic and very few are acquired. The quote below is from a website run by National Institute of Neurological Disorders and Stroke.

"In acquired CJD, the disease is transmitted by exposure to brain or nervous system tissue, usually through certain medical procedures. There is no evidence that CJD is contagious through casual contact with a CJD patient. Since CJD was first described in 1920, fewer than 1 percent of cases have been acquired CJD."

This means it is not highly transmissible, as was claimed by the webpage (alzheimerdisease.tv/alzheimers-disease-risk-by-country) that said that spouses of people with Alzheimer's are 600-percent more likely to also contract the disease. No reference was given for this figure.

I think there is a lot of hyperbole in this article. The more legitimate sources with the National Institute for Neurological Disorders and stroke say that research is ongoing.

Source: "Alzheimer’s Disease Spreading Through Bodily Fluids" by Gary Chandler. He quotes the 600% statistic at the top of his article, which I found alarming.

NYD - Yes, I saw that, but he did not say where he got the figure from. There are other things in that article which are not accurate. I looked on the internet for a reference to the 600% and could not find it.

Guest - you made reference to the 600% Can you provide more information about it?

I've searched more for more information from Thomas Wiesniewski, M.D. the prion and Alzheimer’s researcher at New York University School of Medicine. He weighed in after the death of Pat Summitt, the legendary women's basketball coach.

"It's clear that Alzheimer's is a syndrome, so it has a number of different causes and the optimum treatment may be dependent on what the underlying cause of the particular form of Alzheimer's disease," he said. "With the greater spectrum of different approaches to treatment being tried, I think that increases the probability of finding approaches that will be more efficacious in at least a subset of cases."

I believe the normal way that prions are transmitted is through eating material contaminated with the prions. CJD was spread in societies that ate the brains of infected people. Cows receiving contaminated food ended up with mad cow. There were some thoughts that CJD in people came from eating mad cows, but I don't know anything definitive was written about that. I would have to read more about the ideas for prion transmission. I thought it was only in the diet, but I haven't read anything in a long time.

There is a genetic component for dementia -- even the late onset variety. If our parents have Alzheimer's, we are at greater risk. If they don't find a cure, maybe I'll make sure I don't live too long. I wouldn't want to, or be able to, go through what they have.

Sunny....one of the things I notice about my Mom is that she does everything right (except for the years of drinking wine and diet coke)
She stays at a steady weight
She exercises, walks, weights etc.
She makes great food choices (lots of veggies & salads and variety etc.)
She even does all the brain things like learning to be a flower show judge in her 60s (she had to study books and take tests etc.) Constantly challenging herself physically and mentally....and she still got Dementia.

Not that you shouldn't make all those choices for yourself, just saying, sometimes we do everything right and it is NOTHING we can control.

I think about that a lot. How much control do we really have?

My Mom's Dad had Parkinson's, she has Dementia, her brother has Alzheimer's...there is a good reason for me to suspect a genetic component exists. Now to think that maybe there is a transmissible form???

Anyway, my daughter did a research paper on a prion disease, so I asked her to see if she could find it, now I'm super curious.

JJGood19, yes, that's disappointing, but, what can we do. The person that I know with Vascular Dementia, had long term hypertension and diabetes, that was not treated. Not sure about cholesterol, but, her diet was about as horrible as it gets. No real food for years. Only fried, processed, salty and sweet foods. No water, only sodas. So, I do what I can. Still, we can't predict the future. If I'm spared, I'll be grateful.

I know several people my age, who have parents with Alzheimers. They don't seem to worry about themselves that much, but, I wonder if they do in secret. I would think it would enter your mind. None of my ancestors had (have) dementia, that I am aware of, but, some of them died before they were past 80. Does that count? Does young onset Alzheimers run in families too?

Early onset dementia runs in family. There are two genes that are the ones that have been shown. If someone has early onset in their family and want to know if they will get it, there is a genetic test. If they have the genotype, they know they will get it.

It was thought that later onset Alzheimer's was not inherited, but in the last couple of years they have identified genes that they believe contribute to the damage. They've also shown that children of people with Alzheimer's get it more frequently.

I am reading an NIH paper right now on the prion receptors in nerve cells in relation to beta amyloid. Interesting and definitely worth a read. I am off to learn more. Thanks, NYDIL.

Well, I have come back a bit smarter than I was before I left. First let me correct a mistake I made earlier. The disease people got by eating brains was kuru -- similar to CJD, but different. The disease was pretty much eradicated in humans when they quit cannibalism of the body parts.

Many of the neurodegenerative diseases have two common properties -- improperly folding proteins and the prion receptor on nerve cells. The proteins in the different diseases are different. In prion diseases, the protein is the prion itself. In Alzheimer's it is believed to be the soluble form of the beta amyloid that can work with the receptor to replicate itself and spread. In Parkinson's and multiple system atrophy it is alpha synuclein. It may be the same for Lewy body dementia.

The labs are doing a lot of work on this, so maybe there will be treatment in the future. How long, no one knows. From what I gathered experiments haven't made it beyond animal models, so it will be a while.

Before we get too concerned about contagion through air or fluids, we have to remember that these are proteins and we don't know if they shed in any fluids. Maybe if they got into the blood and the kidneys were damaged, they could pass in the urine. That is a big multi-step if. I doubt that large particles would be shed into the saliva or nose secretions. Maybe if there was bleeding into the nose or mouth. But again, that is a big if. 

Maybe it is good not to eat the brain of someone with any type neural disease. Sorry -- being silly. I don't plan to eat the brain of anything. People did get mad cow (variant CJD) from eating infected cows. I suppose it was through eating the muscles (steak, roast, etc.). So we know that it must have been disseminated somehow.

All the more reason to become a vegetarian. I hope there isn't an unknown carrot prion out there. Brrrr. Scary.

I just thought about the Jewish tradition of not eating animal organs. Many of the things that were "unclean" were indeed known to lead to disease. Maybe what the Jewish people did was very wise. They may have noticed that eating certain things (pork if undercooked, liver if diseased, brain) made people ill.

Jewish people love chopped liver but that's made from chicken livers, not mammal livers.

From what I gathered from Johns Hopkins: Prion diseases are rare. About 300 cases are reported each year in the U.S.

Types of prion diseases include:

CJD. A person can inherit this condition, in which case it's called familial CJD. Sporadic CJD, on the other hand, develops suddenly without any known risk factors. Most cases of CJD are sporadic and tend to strike people around age 60. Acquired CJD is caused by exposure to infected tissue during a medical procedure, such as a cornea transplant. Symptoms of CJD (see below) quickly lead to severe disability and death. In most cases, death occurs within a year.

Variant CJD. This is an infectious type of the disease that is related to “mad cow disease.” Eating diseased meat may cause the disease in humans. The meat may cause normal human prion protein to develop abnormally. This type of the disease usually affects younger people.

Variably protease- sensitive prionopathy (VPSPr). This is also extremely rare, it is similar to CJD but the protein is less sensitive to digestion. It is more likely to strike people around age 70 who have a family history of dementia.

Gerstmann- Sträussler-Scheinker disease (GSS). Extremely rare, but occurs at an earlier age, typically around age 40.

Kuru. This disease is seen in New Guinea. It's caused by eating human brain tissue contaminated with infectious prions. Because of increased awareness about the disease and how it is transmitted, kuru is now rare.

Fatal insomnia (FI). Rare hereditary disorder causing difficulty sleeping. There is also a sporadic form of the disease that is not inherited.

Risk factors for prion disease include:
1. Family history of prion disease
2. Eating meat infected by “mad cow disease”
3. Infection from receiving contaminated corneas or from contaminated medical equipment

Yes, I found where cow liver is permissible, but the fat around it is not kosher. The rules would drive me crazy. :) If you grow up with the rules, it is probably simple.