This doesnt make any sense

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corbenic
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This doesnt make any sense

Post by corbenic »

All the stuff i've read on this site is talking about risk, but that doesn't make any sense to me, either I get alzheimers or I don't, I don't understand what these percentages are supposed to mean.
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Re: This doesnt make any sense

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corbenic wrote: Sun Feb 20, 2022 3:18 pm All the stuff i've read on this site is talking about risk, but that doesn't make any sense to me, either I get alzheimers or I don't, I don't understand what these percentages are supposed to mean.
If you don’t mind getting Alzheimer’s, and you have the finances to pay for years of nursing home care (I hope you aren’t planning to let our taxpayer dollars from Medicaid pay for your decision) and you don’t care about the enormous emotional turmoil and stress your Alzheimer’s will inflict on your loved ones, then yes, it doesn’t make sense to concern yourself/mitigate your risk of getting Alzheimer’s.

But it’s as if you seem to assume there’s nothing that can be done. Not true! That’s mostly true of Familial Alzheimer’s Disease also known as Early Onset Alzheimer’s Disease. But that’s a different set of genes aside from ApoE4 and those cases make up less than 5% of all Alzheimer’s diagnoses.

From our wiki https://wiki.apoe4.info/wiki/Main_Page
“Although being an E4 carrier increases the risk, the number one risk factor for AD is not E4, but aging! According to Genome-Wide Association Study of Brain Connectivity Changes for Alzheimer’s Disease (Samar S. M. Elsheikh, et al Jan 2020) the effects of ApoE4 account for only 27.3% of the overall disease heritability. Research shows that Alzheimer’s takes a long time to develop and is influenced by numerous factors that can increase risk or provide protection, of which ApoE4 is only one factor. There are many modifiable risks that you can control.” (bold font added for emphasis).

Dr Bredesen, (see https://wiki.apoe4.info/wiki/Bredesen_Protocol_ neurodegeneration disease researcher and author of many papers and books on Alzheimer’s and preventing/reversing it has said Alzheimer’s should be a rare disease. There are other doctors/researchers who believe this also. In other words, it is in large part preventable. There is a lot you can do. We don’t yet kow everything there is to know about Alzheimer’s, but we know enough that Alzheimer’s statistics should be heading down, not up as projected.
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Re: This doesnt make any sense

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corbenic wrote: Sun Feb 20, 2022 3:18 pm All the stuff i've read on this site is talking about risk, but that doesn't make any sense to me, either I get alzheimers or I don't, I don't understand what these percentages are supposed to mean.
Hi corbenic and welcome :)
Thank you for sharing your post. I see that TheresaB has already shared some valuable information and links as to ways that you can positively influence your risk factors. I can certainly understand a sense of confusion around the complexity of Alzheimers and the varying risk levels of developing it. One of the important messages shared by this community is that "genes are not our destiny", and each of us has the ability to decrease our risk of developing Alzheimer's Disease by managing lifestyle factors like diet, exercise, sleep and stress.

I can offer some additional resources for you to explore as you navigate the site:

If you would like to learn more about ApoE4, the Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

The How-To Guide offers tips on how to navigate forums and respond to posts including how to quote members (use the quotation icon in the upper right of any post) so they get an email notification of your post. It also demonstrates how to use the Search function for topics, and how to subscribe to topics of interest in the forums.

If you are interested in sharing more details about your own story or just learning about other community members' experiences, you can link to Our Stories.

I hope you find these tools useful, and please feel free to reach out if you need additional support!
Take care and be well.

Warmly,
Sue
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Re: This doesnt make any sense

Post by NF52 »

corbenic wrote: Sun Feb 20, 2022 3:18 pm All the stuff i've read on this site is talking about risk, but that doesn't make any sense to me, either I get alzheimers or I don't, I don't understand what these percentages are supposed to mean.
Hi corbonic! I have to agree that the way percentages are used, or even worse (in my opinion) phrases like "3x the risk" isn't helpful! I have a strong family history of Alzheimer's and also heart disease. I also have two copies of the ApoE4 allele (or gene) that is always cited as a big risk.

But I also worked with kids with brain injuries and saw dozens of them beat the risks and predictions--with luck, with great doctors, incredible families and teachers and therapists and real hard work, so I know that risks never tell a specific person's future. Yet I also believe we don't have to wait and see what happens.

The "risks" you might have seen in different posts here are from lots of different sources, and often people are looking for how to think about having ApoE 4. I think of it as finding out about relatives who've had colon cancer (also in my family) so maybe I need to go in for that colonoscopy!

I choose to look less at risk and more at resilience--what do people do who do NOT get Alzheimers? It seems like they have education at least through high school, preferably beyond, enjoy physical activity or exercise, have occupations that challenge their problem-solving, eat mostly foods that are haven't spent a year on a store shelf or are full of sugar and find reasons to enjoy life.

Very few people claim to be able to offer anyone a crystal ball into their future and I don't think our members are into that either. We're more about trying to focus on what we can control and following new developments with interest and a healthy dose of reality-testing.

Hope you tell us more about yourself--you sound like someone who enjoys a good discussion!
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Re: This doesnt make any sense

Post by corbenic »

Those resources to read are cool and they're full of good suggestions but I still don't understand what the percentage means, how can you say I have a 27.3% chance of getting alzheimers? It really doesn't make any sense to me, either I get it or I don't, like what does that 27.3% actually mean? I am e2/e3 actually but allot of my relatives got alzheimers and I want to know if I am going to get it or not like they did. If I can't have a crystal ball to tell me for sure then what is the point of having a percentage? Like, there is only one me, you can't say that 27.3% of me get alzheimer's and the other 72.7% don't.

Thank you all for the help but I am still confused as what it actually means.
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Re: This doesnt make any sense

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corbenic wrote: Sun Feb 20, 2022 8:22 pm Thank you all for the help but I am still confused as what it actually means.
What do the odds at a horse race mean? It indicates what is likely, but doesn’t determine anything. Longshots still win horse races.

Same with ApoE4. The percentages don’t really mean anything. Statistics are based on history, a collection of numbers centered on one certain variable, in our case, the ApoEε4 allele. Although ApoE4 strongly influences health outcomes, it does not work in isolation, we all hold other genes and respond to other environmental factors that contribute to the likelihood of good or poor health outcomes.

What will actually happen to an ApoE4 individual is largely based on epigenetics which is the influence of factors that turn genes off and on. Statistics cannot factor in all variables regarding other genes, racial composition, diet, exercise, sleep, stress, family trauma history, pollution exposure, etc.

When it comes to percentages, I boil it down to:
* if you hold one ε4 and maintain a modern western lifestyle/diet then your chances of getting Alzheimer’s, cardiovascular disease, or a shortened lifespan are good,
*if you hold two ε4s and maintain a modern western lifestyle/diet then your chances of getting Alzheimer’s, cardiovascular disease, or a shortened lifespan are really good.

But nothing is 100%. There are healthy ApoEε4/4s in their 90s. If ApoE ε2/2, ε2/3, or ε3/3, you can still get Alzheimer’s, cardiovascular disease, or a shortened lifespan, the biochemistry of those folks just seems to be better adapted to modern lifestyle, thus their odds are better.
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Re: This doesnt make any sense

Post by Tincup »

corbenic wrote: Sun Feb 20, 2022 8:22 pm Thank you all for the help but I am still confused as what it actually means.
I concur completely with what Theresa says. Life is not deterministic. However adopting certain behaviors can influence the outcome. Driving/riding in a car carries risks. Per the NTHSA 90% of car occupants wore seat belts and 47% of those who were killed in an accident were not wearing seat belts. So assuming that wearing a seat belt does not change your chance of getting in an accident then the 10% of those who don't wear seat belts had 47% of the deaths. So nothing is guaranteed, but you can certainly improve your odds of not dying in an accident.

I look at ApoE4 similarly. The fact I'm in a population with higher risk motivates me to adopt practices or activities to mitigate that risk. Statistics only predict for populations, not for the individual. Nothing I do will guarantee the outcome for me one way or the other.
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Re: This doesnt make any sense

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corbenic wrote: Sun Feb 20, 2022 8:22 pm... It really doesn't make any sense to me, either I get it or I don't, like what does that 27.3% actually mean? I am e2/e3 actually but allot of my relatives got alzheimers and I want to know if I am going to get it or not like they did....Thank you all for the help but I am still confused as what it actually means.
Hi again corbenic!

I get to spend some time with great folks who love statistics, so will approach this from examples in real life, starting with your genetics. You have ApoE 2/3, which mean you got one copy of ApoE 2 from a parent who may have lived a very long time with no Alzheimer's, and one copy of ApoE 3 from your other parent. Your siblings, aunts, uncles and cousins may have completely different ApoE combinations!

Only about 5% of people have ApoE 2--and those 5% of people generally live longer and have much less chance of having any kind of dementia than the rest of us! Here's an estimate of your risk getting a diagnosis of Alzheimer's by the age of 85, from a study of many thousands of people who were followed for decades in the US and the Netherlands:
10%–15% [risk of a diagnosis by the age of 85] for individuals with APOE 3/3, APOE 2/3 and APOE 2/2 [and] that risk might be lower for those with APOE 2/3 and APOE 2/2...
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

People who study who gets Alzheimer's for their living believe that you have roughly an 85-90% chance of NOT getting Alzheimer's in your lifetime! That means that they believe if 100 people with your genes (ApoE 2/3) were followed for their entire life, 85 or 90 or more would NOT get Alzheimer's.

Now you don't want to get other diseases like diabetes, or have high blood pressure that aren't good for your brain--or if you have those conditions you want to work to manage them. But your relatives who you said had "Alzheimer's" either had something else (like mini-strokes or diabetes-caused brain inflammation) or had different genes than you. My dad was bald the time he was 25, but both of my sons have great hair in their 30's--so just because a relative had Alzheimer's doesn't mean you will also.

So don't worry about "having it or not having it" --just focus on having a healthy life with some good food and exercise and good people to be around.
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Re: This doesnt make any sense

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NF52 wrote: Mon Feb 21, 2022 4:52 pm
corbenic wrote: Sun Feb 20, 2022 8:22 pm... It really doesn't make any sense to me, either I get it or I don't, like what does that 27.3% actually mean? I am e2/e3 actually but allot of my relatives got alzheimers and I want to know if I am going to get it or not like they did....Thank you all for the help but I am still confused as what it actually means.
Hi again corbenic!

I get to spend some time with great folks who love statistics, so will approach this from examples in real life, starting with your genetics. You have ApoE 2/3, which mean you got one copy of ApoE 2 from a parent who may have lived a very long time with no Alzheimer's, and one copy of ApoE 3 from your other parent. Your siblings, aunts, uncles and cousins may have completely different ApoE combinations!

Only about 5% of people have ApoE 2--and those 5% of people generally live longer and have much less chance of having any kind of dementia than the rest of us! Here's an estimate of your risk getting a diagnosis of Alzheimer's by the age of 85, from a study of many thousands of people who were followed for decades in the US and the Netherlands:
10%–15% [risk of a diagnosis by the age of 85] for individuals with APOE 3/3, APOE 2/3 and APOE 2/2 [and] that risk might be lower for those with APOE 2/3 and APOE 2/2...
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

People who study who gets Alzheimer's for their living believe that you have roughly an 85-90% chance of NOT getting Alzheimer's in your lifetime! That means that they believe if 100 people with your genes (ApoE 2/3) were followed for their entire life, 85 or 90 or more would NOT get Alzheimer's.

Now you don't want to get other diseases like diabetes, or have high blood pressure that aren't good for your brain--or if you have those conditions you want to work to manage them. But your relatives who you said had "Alzheimer's" either had something else (like mini-strokes or diabetes-caused brain inflammation) or had different genes than you. My dad was bald the time he was 25, but both of my sons have great hair in their 30's--so just because a relative had Alzheimer's doesn't mean you will also.

So don't worry about "having it or not having it" --just focus on having a healthy life with some good food and exercise and good people to be around.
Ok thanks this is all really useful. Both of my parents are still alive and alzheimer's free actually, I am 21 and they are in their fifties. I get all the stuff about the healthy life, but what I'm stuck on is the actual idea of probability. When you say 85-90% chance of not getting it, is what you're saying that I might be able to move myself from the 10 to 15 people out of 100 who will get it to the 85 to 90 who don't? I don't even know which group I'm going to be in though ...
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Re: This doesnt make any sense

Post by NF52 »

corbenic wrote:Ok thanks this is all really useful. Both of my parents are still alive and alzheimer's free actually, I am 21 and they are in their fifties. I get all the stuff about the healthy life, but what I'm stuck on is the actual idea of probability. When you say 85-90% chance of not getting it, is what you're saying that I might be able to move myself from the 10 to 15 people out of 100 who will get it to the 85 to 90 who don't? I don't even know which group I'm going to be in though ...
Thanks so much for sharing your age and your parents' ages!

It makes it much easier for me to say that you don't have to move yourself FROM the group that will get Alzheimer's--that group isn't pre-marked at birth or at age 21. Right now, you are in the group that can look forward to living a very long, very healthy life with no Alzheimer's.

The easy part for you (I hope!) is that you just have to keep doing what makes sense for every person to do when they are young--and not young:

* Enjoy lots of different kinds of food that isn't sold by fast food places!
* Enjoy getting outside and being active!
* When you find yourself worrying about something too much, try to do a mental re-set by doing something you enjoy.
* Do almost everything in moderation--including drinking--and try to avoid getting a head injury (no professional football as your career!)
* In your careers (you'll probably have more than one job or career) find something you can enjoy or feel good about doing and make time for what you really love outside of work.

Be well, corbenic--you are going to be fine!
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