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Just found out APOE 4-2 copies

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tori0417
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Just found out APOE 4-2 copies

Postby tori0417 » Mon Jun 22, 2020 11:46 am

I just found out from 23andme that I carry 2 copies of the E4 gene. I am 34, married and have 2 small children and I cant help but feel like Im going to lose my 60's+ to Alzheimers. What I have read seems to have shown a significant chance of being diagnosed. By nature I am a planner and feel like I need to go on a crusade to further genetic testing and find out what I can do to possibly slow things down. Has anyone received these results and what did you do? I am so upset.

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Re: Just found out APOE 4-2 copies

Postby Tincup » Mon Jun 22, 2020 12:06 pm

Welcome tori0417,

I'd relax a bit. My 4/4 wife and I (she's 60 & I'm 65) both are on the track that there are things that can be done to materially mitigate this risk. This is especially true for someone who is 34. First off, much of this just relates to being as healthy as you can. This can mitigate many of the other risks that can pop up between your age now and your elder years. In my family, my 32 year old son has a glioblastoma brain cancer. If he makes it to the age where Alz risk genes play a role, it will be a cause for celebration. Paying attention to your health now may help avoid issues like this along the way and either eliminate or push a long way into the future any issues with Alz D.

A place to start is our Primer, written by a doc who is 4/4 and a GP in a country, not the US. Dale Bredesen MD's book is also an excellent resource.

Personally the big issues - avoiding hyperinsulinemia, sleep, stress & exercise can go a long way. If the whole country did this, we'd likely have even a very different outcome with COVID (since almost all COVID deaths have comorbidities).
Tincup
E3,E4

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Re: Just found out APOE 4-2 copies

Postby AKA » Mon Jun 22, 2020 2:21 pm

tori0417 wrote:I just found out from 23andme that I carry 2 copies of the E4 gene. I am 34, married and have 2 small children and I cant help but feel like Im going to lose my 60's+ to Alzheimers. What I have read seems to have shown a significant chance of being diagnosed. By nature I am a planner and feel like I need to go on a crusade to further genetic testing and find out what I can do to possibly slow things down. Has anyone received these results and what did you do? I am so upset.


Hello Tori0417 and Welcome to the forum!

Finding out I was a carrier of the Apoe4 threw me back as well. After some research and a new focus on managing lifestyle strategies, things eased up. A few deep, calming breaths helped too!!

In addition to the Primer that Tincup shared, you might want to take a look at the "Just found out you're an E4 carrier?" page in the Wiki section of the site. It will direct you to the Welcome page, give you the 'quickest set of preventive strategies' link and more. I'd also like to point out the "How-To" get the most out of the Apoe4.info site, it will help you navigate and find the info you are looking for.

You are on the right track tori0417 and this is a supportive community with a huge amount of experience and research to share.
You're not alone!
Again, Welcome to the community!
Andrea

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Re: Just found out APOE 4-2 copies

Postby NF52 » Wed Jun 24, 2020 9:26 am

tori0417 wrote:I just found out from 23andme that I carry 2 copies of the E4 gene. I am 34, married and have 2 small children and I cant help but feel like Im going to lose my 60's+ to Alzheimers. What I have read seems to have shown a significant chance of being diagnosed. By nature I am a planner and feel like I need to go on a crusade to further genetic testing and find out what I can do to possibly slow things down. Has anyone received these results and what did you do? I am so upset.
Hi tori0417!

As Tincup and Andrea have shared, your feelings upon learning that you have ApoE 4/4 are common--and with time can become less fearsome. I am exactly twice your age (68) and have ApoE 4/4 also. I have not lost my 60's to Alzheimer's, and hope to not lose my 70's to it either. Nor have I experienced heart disease, although my dad died of cardiac arrest at 67. Like you, I am by nature a planner, so I had a coronary calcium scan two years ago that reported my "cardiac age" was 39, with zero plaque.

Take-away mantra: Your ApoE 4/4 status is only a risk, not a destiny.

Here's some science to back that up: A 2017 meta-analysis of three large population cohorts and a 4th cohort of people with family history of Alzheimer's in the US and Netherlands found that in people ages 60-85, the risk of AD was not as great as earlier studies using Alzheimer's clinic patients found:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4...; and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

So at twice your age, Tori, I have a 45-70% chance of NOT having to face a diagnosis of mild cognitive impairment or Alzheimer's in my lifetime! I participated in the Generations Study mentioned in that quote and had hours of testing every six months for 36 months. I learned in March 2020 that all my scores on in-depth cognitive testing are in the normal to the superior range. I'm not an outlier: several friends with ApoE 4/4 in their 60's have had similar results in the Generations study. An active 78 year old with ApoE 4/4 on the forum was told his scores showed NO decline for the last 3 years by Stanford researchers in a different study of "resilient" at-risk individuals. A woman with ApoE4/4 remains fine five years after she joined this forum at age 77.

It may well be within our power to keep using our brains throughout our lives. The strategies suggested in Dr. Stavia's Primer are endorsed by leading researchers with overwhelming consensus on the big ideas and you should feel empowered by using them.

Our forum has great resources and support ready for any questions you have. You may want to check out a new resource aimed at women: The XX Brain: The Groundbreaking Science Empowering Women to Maximize Cognitive Health and Prevent Alzheimer's Disease by Dr Lisa Mosconi, PhD. I haven't read the book, but am eagerly awaiting its arrival in the mail on Friday.) Dr. Mosconi is the director of the Women's Brain Initiative and associate director of the Alzheimer's Prevention Clinic at Weill Cornell Medical College and has been committed to improving the research on brain health for women and prevention of Alzheimer's since her grandmother died with the disease. Aside from Alzheimer's, it sounds like this is a great book for any woman--and I plan to get it for my 36 year old ApoE 3/4 daughter who also has 2 small children!

People my age are doing our best to show that lifestyle factors, social and cognitive engagement and participation in clinical trials can help people like you and my three adult children to plan for long and fulfilling lives. As a mom and grandmother, I want you to know how much I respect your honest emotions, and believe that your planning skills are exactly what you need to prove your own resilience!
4/4 and still an optimist!

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Re: Just found out APOE 4-2 copies

Postby Eric » Sun Jun 28, 2020 8:11 am

I feel your pain. I have the same genes, as does my older brother. I believe you have jumped to reasonable conclusions. But, as you probably know, anxiety is trouble in itself. I am 67, so too old to be your peer. Still, if you wish, please write me at ericlouisrosenblatt@gmail.com

I do not believe that it is known what can avert the outcome you fear, though at your age it is reasonable to hope for a cure before it threatens you. For instance, I have been in contact with a trial which literally injects Apoe2 riding on adenovirus into cerebrospinal fluid, converting neurons into makers of the protein e2. It sounds like science fiction, right? But this is a real trial. I have some far simpler ideas as well, from reading a lot of academic articles on the topic ( though I sure don’t understand them all). They may or may not help. They are not as simple as eating more fish or getting more exercise. My reading tells me those are generally good things to do, but I don’t see the evidence that they will fix our problem.

As you may know, two in a hundred share your problem. (14% have one e4). You are not alone, though, to be honest, I only so far know my brother that is homozygous. Presumably, I know other people, but rarely does someone know there genes, or at least speaks of it. Anyway, I will look for your reply, personally, or on this site.

Eric

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Re: Just found out APOE 4-2 copies

Postby MiniJunkie » Sun Aug 09, 2020 4:34 pm

NF52 wrote:
tori0417 wrote:I just found out from 23andme that I carry 2 copies of the E4 gene. I am 34, married and have 2 small children and I cant help but feel like Im going to lose my 60's+ to Alzheimers. What I have read seems to have shown a significant chance of being diagnosed. By nature I am a planner and feel like I need to go on a crusade to further genetic testing and find out what I can do to possibly slow things down. Has anyone received these results and what did you do? I am so upset.
Hi tori0417!

As Tincup and Andrea have shared, your feelings upon learning that you have ApoE 4/4 are common--and with time can become less fearsome. I am exactly twice your age (68) and have ApoE 4/4 also. I have not lost my 60's to Alzheimer's, and hope to not lose my 70's to it either. Nor have I experienced heart disease, although my dad died of cardiac arrest at 67. Like you, I am by nature a planner, so I had a coronary calcium scan two years ago that reported my "cardiac age" was 39, with zero plaque.

Take-away mantra: Your ApoE 4/4 status is only a risk, not a destiny.

Here's some science to back that up: A 2017 meta-analysis of three large population cohorts and a 4th cohort of people with family history of Alzheimer's in the US and Netherlands found that in people ages 60-85, the risk of AD was not as great as earlier studies using Alzheimer's clinic patients found:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4...; and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

So at twice your age, Tori, I have a 45-70% chance of NOT having to face a diagnosis of mild cognitive impairment or Alzheimer's in my lifetime! I participated in the Generations Study mentioned in that quote and had hours of testing every six months for 36 months. I learned in March 2020 that all my scores on in-depth cognitive testing are in the normal to the superior range. I'm not an outlier: several friends with ApoE 4/4 in their 60's have had similar results in the Generations study. An active 78 year old with ApoE 4/4 on the forum was told his scores showed NO decline for the last 3 years by Stanford researchers in a different study of "resilient" at-risk individuals. A woman with ApoE4/4 remains fine five years after she joined this forum at age 77.

It may well be within our power to keep using our brains throughout our lives. The strategies suggested in Dr. Stavia's Primer are endorsed by leading researchers with overwhelming consensus on the big ideas and you should feel empowered by using them.

Our forum has great resources and support ready for any questions you have. You may want to check out a new resource aimed at women: The XX Brain: The Groundbreaking Science Empowering Women to Maximize Cognitive Health and Prevent Alzheimer's Disease by Dr Lisa Mosconi, PhD. I haven't read the book, but am eagerly awaiting its arrival in the mail on Friday.) Dr. Mosconi is the director of the Women's Brain Initiative and associate director of the Alzheimer's Prevention Clinic at Weill Cornell Medical College and has been committed to improving the research on brain health for women and prevention of Alzheimer's since her grandmother died with the disease. Aside from Alzheimer's, it sounds like this is a great book for any woman--and I plan to get it for my 36 year old ApoE 3/4 daughter who also has 2 small children!

People my age are doing our best to show that lifestyle factors, social and cognitive engagement and participation in clinical trials can help people like you and my three adult children to plan for long and fulfilling lives. As a mom and grandmother, I want you to know how much I respect your honest emotions, and believe that your planning skills are exactly what you need to prove your own resilience!


I found out a couple of years ago (I’m 47) that I have double 4E, but it has only now started to sink in because my mother was just diagnosed with Alzheimer’s. Feeling quite down and hopeless about it but your post is very reassuring!
47, married with 3 kids, mom with Alzheimer’s, and
I am 4/4

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Re: Just found out APOE 4-2 copies

Postby NF52 » Sun Aug 09, 2020 5:19 pm

MiniJunkie wrote:...

I found out a couple of years ago (I’m 47) that I have double 4E, but it has only now started to sink in because my mother was just diagnosed with Alzheimer’s. Feeling quite down and hopeless about it but your post is very reassuring!
Welcome, Minijunkie!

I'm so glad that you found our site and that my earlier reply to another new user is reassuring! Life takes us down some very unexpected paths, doesn't it? The good news is that you are not alone on the ApoE 4/4 path--neither is your mother in her recent diagnosis.

I don't want to overwhelm you, so let me just offer a few thoughts, first about your health:

Researchers are zeroing in more and more on the specific risks and pre-clinical phases of Alzheimer's disease in those with ApoE4. Partly that's because there are an estimated 7 million people just in the U.S. who have ApoE 4/4 (about 2% of the population). Many population-based studies here and in other countries provide strong evidence that up to 40% of dementia cases could be prevented using the kinds of strategies recommended by Stavia, the ApoE 4/4 doctor who is the author of our Primer. In fact, the "incidence" of Alzheimer's is down about 20% in the US and many first-world countries, attributed in large part to public health efforts to improve diets, reduce smoking and alcohol abuse, prevent diabetes, treat mental illness, provide clean air and water and extend higher education to more people.

We also know that women may be at particular risk after menopause and may need to consider with their primary care provider hormone replacement therapy for a relatively short period of years.

We are very close to a blood test that would identify people with the biomarkers of pre-clinical Alzheimer's changes in the brain (amyloid-beta and tau) 15-20 years before any signs of brain changes in neurons or observed changes in behavior. I recently heard a leading researcher predict that similar to people with a family history of heart disease or cancer, she thinks it will soon be common for people ages 50-55 to get a test for signs of preclinical changes and then have an array of possible drug and non-drug treatments to remove amyloid and tau and improve vascular and metabolic health, reduce inflammation and prevent infections that can cross into the brain.

I'm guessing that your mother may be in her mid-70's or so, which for many people has been the point at which some of the memory or language or planning difficulties lead to a diagnosis of Alzheimer's disease (AD). Assuming that your mother is still in the early (mild) stages of the disease, you may want to use the same strategies in the Primer to optimize her diet and have her doctor check for some key markers (See Biomarkers for suggestions by Dr. Stavia on what to prioritize if you have to pay out of pocket.

Although opinions on the Alzheimer's Association tend to vary based on people's individual experiences with either their local chapter or the website, I'd encourage you to consider informing yourself of their supports here: Live Well and Just Diagnosed.

I have recently met three people diagnosed with Alzheimer's disease more than 3 years ago. All are still active in their communities, speaking in public on the need to treat Alzheimer's as a chronic disease and not a stigma. All are able to continue areas of interest, including travel--sometimes with help of others for planning or for note-taking.

FInally, one of the most affirming views I have seen and believe is this:
The Canadian Charter of Rights for People with Dementia
Your mom is still your mom, and also a person "who happens to have a diagnosis of dementia" as one friend put it. This is a new journey for both of you, but may be the most meaningful path you will walk with her.

Hugs from another 4/4
4/4 and still an optimist!

MiniJunkie
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Re: Just found out APOE 4-2 copies

Postby MiniJunkie » Sun Aug 09, 2020 5:29 pm

NF52 wrote:
MiniJunkie wrote:...

I found out a couple of years ago (I’m 47) that I have double 4E, but it has only now started to sink in because my mother was just diagnosed with Alzheimer’s. Feeling quite down and hopeless about it but your post is very reassuring!
Welcome, Minijunkie!

I'm so glad that you found our site and that my earlier reply to another new user is reassuring! Life takes us down some very unexpected paths, doesn't it? The good news is that you are not alone on the ApoE 4/4 path--neither is your mother in her recent diagnosis.

I don't want to overwhelm you, so let me just offer a few thoughts, first about your health:

Researchers are zeroing in more and more on the specific risks and pre-clinical phases of Alzheimer's disease in those with ApoE4. Partly that's because there are an estimated 7 million people just in the U.S. who have ApoE 4/4 (about 2% of the population). Many population-based studies here and in other countries provide strong evidence that up to 40% of dementia cases could be prevented using the kinds of strategies recommended by Stavia, the ApoE 4/4 doctor who is the author of our Primer. In fact, the "incidence" of Alzheimer's is down about 20% in the US and many first-world countries, attributed in large part to public health efforts to improve diets, reduce smoking and alcohol abuse, prevent diabetes, treat mental illness, provide clean air and water and extend higher education to more people.

We also know that women may be at particular risk after menopause and may need to consider with their primary care provider hormone replacement therapy for a relatively short period of years.

We are very close to a blood test that would identify people with the biomarkers of pre-clinical Alzheimer's changes in the brain (amyloid-beta and tau) 15-20 years before any signs of brain changes in neurons or observed changes in behavior. I recently heard a leading researcher predict that similar to people with a family history of heart disease or cancer, she thinks it will soon be common for people ages 50-55 to get a test for signs of preclinical changes and then have an array of possible drug and non-drug treatments to remove amyloid and tau and improve vascular and metabolic health, reduce inflammation and prevent infections that can cross into the brain.

I'm guessing that your mother may be in her mid-70's or so, which for many people has been the point at which some of the memory or language or planning difficulties lead to a diagnosis of Alzheimer's disease (AD). Assuming that your mother is still in the early (mild) stages of the disease, you may want to use the same strategies in the Primer to optimize her diet and have her doctor check for some key markers (See Biomarkers for suggestions by Dr. Stavia on what to prioritize if you have to pay out of pocket.

Although opinions on the Alzheimer's Association tend to vary based on people's individual experiences with either their local chapter or the website, I'd encourage you to consider informing yourself of their supports here: Live Well and Just Diagnosed.

I have recently met three people diagnosed with Alzheimer's disease more than 3 years ago. All are still active in their communities, speaking in public on the need to treat Alzheimer's as a chronic disease and not a stigma. All are able to continue areas of interest, including travel--sometimes with help of others for planning or for note-taking.

FInally, one of the most affirming views I have seen and believe is this:
The Canadian Charter of Rights for People with Dementia
Your mom is still your mom, and also a person "who happens to have a diagnosis of dementia" as one friend put it. This is a new journey for both of you, but may be the most meaningful path you will walk with her.

Hugs from another 4/4


Thank you, I have been reading the primer, and I just ordered a Fitbit for the exercise and sleep tracking :). I have a few things in my favor: I don’t smoke or drink, and I am male. However, I’m pretty sedentary so that has to change ASAP.

My mom is 69. I’ll share some of the primer info with her and my dad.
47, married with 3 kids, mom with Alzheimer’s, and
I am 4/4

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Re: Just found out APOE 4-2 copies

Postby MicheleCC » Sun Aug 09, 2020 9:31 pm

MiniJunkie wrote:I found out a couple of years ago (I’m 47) that I have double 4E, but it has only now started to sink in because my mother was just diagnosed with Alzheimer’s. Feeling quite down and hopeless about it but your post is very reassuring!


Welcome MiniJunkie! As you've already seen here, there is much hope and support from other apoe4 carriers through this site. You are not alone on this journey. While it's completely normal to feel down and hopeless in the face of an Alzheimer's diagnosis or learning your ApoE status, knowing it helps to put you in control of your health and future. Personally, I look at ApoE status kind of like looking under the hood of your car to see what type of engine it has. You wouldn't put propane gas in a diesel engine! You need to learn what fuel and maintenance program is best for your type of engine.

It sounds like you're already well underway in understanding apoe4 by reading the Primer. I welcome you to share more of your story and perhaps even encourage your mom to join the conversation here on apoe4.info if you think she's up for it. The "Our Stories" section of the site is a great place to begin getting to know other users and help us get to know you. Sharing your story really allows us to support one another and share our struggles as well as our successes.

How to get the most of the Apoe4.info website
If needed, you may find the "How to" portion of our Wiki helpful for learning how to navigate the site, subscribe to threads or generally help you find what you're looking for.

Information is power. Good luck to you and your mother on this journey.

Warm regards,
MicheleCC
Functional Medicine Certified Health Coach
Certified Nutrition Educator & Consultant
Board Certified in Holistic Nutrition (NANP)

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Re: Just found out APOE 4-2 copies

Postby stanleyfg » Sat Sep 05, 2020 2:23 pm

Hi,
Just registered and joined the conversation. Bredesen's first book is remarkable and shows a path. Crazy difficult to implement ALL his ideas, but just doing a portion has to be helpful, and the more the better. I just ordered his 2nd book. I read the first 2 years ago. It is a serious commitment to adopt as much of the protocol as possible, but what are the other choices? The protocol represents healthy living for more than the brain anyway.
The only hesitation I have about all this is that there aren't enough participants on this site. I'm attributing that to the fact that it is such a serious commitment to dive in, and too many people don't have the discipline. To me, a 1-APOE4 person in my 70s, I have chosen to trust the protocol and implement as much as I can, period.


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