Partner found out she's 4/4 - she's OK with it, I'm not

A primer for newbies and old pros alike.
AlB
New User
New User
Posts: 2
Joined: Tue Apr 13, 2021 1:35 pm

Partner found out she's 4/4 - she's OK with it, I'm not

Postby AlB » Tue Apr 13, 2021 2:00 pm

Hello, Newbie here.

about 6 months ago my wife (50) undertook a genealogical DNA test, and 'ticked the box' about other medical aspects, of course curious about various family members who have had cardiovascular problems, but with no family history of Alzheimers I think she never thought for a second that this would be an outcome.

I should stress, I don't blame her for this in any way, it simply wasn't a consequence she foresaw.

Of course, the results came back confirming that she is E4/E4. After a bit of initial confusion and reading, she is fairly blase about it.

I (47) however am a natural worrier with a history of depression and anxiety, and lost my grandmother to Alzheimer's, and have been really struggling with the knowledge. It's hard to explain the complexity of my emotions, but I think I am going through anticipatory Grief, almost mourning, not my wife, but the future I saw for us, if that makes sense?

My parents are baby boomers, and fit and healthy, so in my mind I could very easily be looking at loosing them, and my wife at around the point I should be retiring. And facing that period we all look forward to alone.

I am not sleeping well, have recurring bad dreams I KNOW relate to these fears, but also feel it is not easy to discuss this with my wife, as I know she already feels awful at the consequences of the results she inadvertently brought into our lives. As I say, I don't blame her, and don't want her to feel more guilt than she does for the suffering she knows I'm going through (though I admit I am bottling a lot of it up for that reason, and yes, I know that doesn't help)

We have 2 kids, and she's fit and well. Rationally I know I should be living in the here and now - any of us could be hit by a bus tomorrow, but she's 50, Female, obese and APOE4/4 - I know nothing is certain, but my anxiety also knows the odds are not the way we'd like them to be stacked.

On the up side, she is trying to be more healthy, and much more positive in outlook than me.

I can find a lot of info on 4/4 on-line (perhaps too much for a layman!) but little on the impact of the knowledge on the partners of those getting their results - we know (too late) that such tests are not recommended, but what else is there?

sorry for the long intro, but I really would appreciate any advice / experience in this area

A

User avatar
seachangehealthcoach
Support Team Intern
Support Team Intern
Posts: 29
Joined: Wed Feb 10, 2021 5:31 pm

Re: Partner found out she's 4/4 - she's OK with it, I'm not

Postby seachangehealthcoach » Tue Apr 13, 2021 3:01 pm

AlB wrote:Hello, Newbie here.

about 6 months ago my wife (50) undertook a genealogical DNA test, and 'ticked the box' about other medical aspects, of course curious about various family members who have had cardiovascular problems, but with no family history of Alzheimers I think she never thought for a second that this would be an outcome.

I should stress, I don't blame her for this in any way, it simply wasn't a consequence she foresaw.

Of course, the results came back confirming that she is E4/E4. After a bit of initial confusion and reading, she is fairly blase about it.

I (47) however am a natural worrier with a history of depression and anxiety, and lost my grandmother to Alzheimer's, and have been really struggling with the knowledge. It's hard to explain the complexity of my emotions, but I think I am going through anticipatory Grief, almost mourning, not my wife, but the future I saw for us, if that makes sense?

My parents are baby boomers, and fit and healthy, so in my mind I could very easily be looking at loosing them, and my wife at around the point I should be retiring. And facing that period we all look forward to alone.

I am not sleeping well, have recurring bad dreams I KNOW relate to these fears, but also feel it is not easy to discuss this with my wife, as I know she already feels awful at the consequences of the results she inadvertently brought into our lives. As I say, I don't blame her, and don't want her to feel more guilt than she does for the suffering she knows I'm going through (though I admit I am bottling a lot of it up for that reason, and yes, I know that doesn't help)

We have 2 kids, and she's fit and well. Rationally I know I should be living in the here and now - any of us could be hit by a bus tomorrow, but she's 50, Female, obese and APOE4/4 - I know nothing is certain, but my anxiety also knows the odds are not the way we'd like them to be stacked.

On the up side, she is trying to be more healthy, and much more positive in outlook than me.

I can find a lot of info on 4/4 on-line (perhaps too much for a layman!) but little on the impact of the knowledge on the partners of those getting their results - we know (too late) that such tests are not recommended, but what else is there?

sorry for the long intro, but I really would appreciate any advice / experience in this area

A


Hi AIB,
Welcome to the Forum! We are so glad you found us and hope that you will find some comfort and relief as you look through the plethora of evidence-based information housed on the Forum. It sounds like you are feeling a bit overwhelmed by this new revelation your wife found and rightfully so as there is so much conflicting information our there on the Internet. You also sound like you are curious and like to learn which will undoubtedly help you sift through information. One sentiment that is very popular on this Forum is that genes are NOT our destiny. There are many things we can do to alter the way our genes are expressed and impact our health outcomes. I hope you will find the lifestyle modifications that are discussed and presented on this Forum to be of encouragement to you. I also encourage you to read the Our Stories section (link below) as there are many people living very full, healthy and happy lives with ApoE4. Following are some suggestions on how to navigate the sight, I also included some links here to some of the the lifestyle suggestions in the Wiki. For example, managing sleep, exercise and stress are ways to help improve cognitive brain health. Information can be found in the WIKI section or by clicking on the links above. Please stay in touch and keep asking questions. This is a community that welcomes inquiry and is here to help people feel not so alone in their worry, anxiety and discovery. I wish you a better nights sleep soon.

How-To Guide

Primer

Our Stories
Jennifer Balzano
Founder, SeaChange Health Coaching
M.A., B.S., Functional Medicine Certified Health Coach

NF52
Support Team
Support Team
Posts: 1590
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Partner found out she's 4/4 - she's OK with it, I'm not

Postby NF52 » Tue Apr 13, 2021 6:08 pm

AlB wrote:...
Of course, the results came back confirming that she is E4/E4. After a bit of initial confusion and reading, she is fairly blase about it.

I (47) however am a natural worrier with a history of depression and anxiety, and lost my grandmother to Alzheimer's, and have been really struggling with the knowledge. It's hard to explain the complexity of my emotions, but I think I am going through anticipatory Grief, almost mourning, not my wife, but the future I saw for us, if that makes sense?

My parents are baby boomers, and fit and healthy, so in my mind I could very easily be looking at loosing them, and my wife at around the point I should be retiring. And facing that period we all look forward to alone.

I am not sleeping well, have recurring bad dreams I KNOW relate to these fears, but also feel it is not easy to discuss this with my wife, as I know she already feels awful at the consequences of the results she inadvertently brought into our lives. As I say, I don't blame her, and don't want her to feel more guilt than she does for the suffering she knows I'm going through (though I admit I am bottling a lot of it up for that reason, and yes, I know that doesn't help)

We have 2 kids, and she's fit and well. Rationally I know I should be living in the here and now - any of us could be hit by a bus tomorrow, but she's 50, Female, obese and APOE4/4 - I know nothing is certain, but my anxiety also knows the odds are not the way we'd like them to be stacked....A
Welcome "A"! You have come to a place where we acknowledge what we don't know--and then go about trying to make our own path through what can at first seem like a deep, forbidding wilderness. None of us can foretell our future, so I settle for what modern day Stoics suggest: Plan for a life. with purpose, meaning and joy while you take reasonable steps to increase resilience and manage risk. Let the future get written in the future--never today!

I WAS your wife 20 years ago--although I didn't know my 4/4 status then. BUT I did have 3 teens and a job that required 12-14 hour days and little time for fun or exercise. And yet now at age 69, I have tested well within the normal range on extensive neuropsych assessments as part of a clinical trial (Generations 1) that recruited thousands of healthy ApoE 4/4 ages 60-75. People with ApoE 4/4 started this forum and I know of many on this forum and working in roles as advisors to clinical trials and as professors, as advocates, as treasurers, as mentors and as busy grandparents caring for infants, toddlers and school-age grandkids.

It's possible your boomer parents will reach the end of a long, active and healthy life by the time you're ready to retire at age 65 or so--or they could still be enjoying life at 101, like the father of one of our ApoE4.info Senior Support Staff. It's almost certain that your wife will be retiring in good health along with you! Remember when you read scary statistics that most of them are based on people closer to your grandparents' generations, not yours. Many of those studies had to rely on people who were referred to memory care clinics before people learned their ApoE 4 status on 23& me!

Here's the conclusion of a well-validated meta-analysis of thousands of people in communities in the US and Europe to better assess risk. it was part of the information given to me at the beginning of the Generations clinical trial--and has proven reliable based on people I know.
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 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty.

APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

You'll notice that someone who has ApoE 3/3 (like my husband) still has a 10-15% risk of Alzheimer's, so my husband's risk is smaller than mine, but not infinitesimally smaller.

Here's even more encouraging news, from a 2017 peer-reviewed article looking at the effect of education beyond grade school or high school, having a job which provides cognitive challenge and some latitude for decision-making and having late-life social engagement. [All of these are areas in which my mother and your grandmother likely faced some barriers prior to their Alzheimer's diagnosis.]
Using a life-course approach, we found in our cohort that cognitive reserve-stimulating activities during early, adult, and late life were associated with a lower risk of dementia occurrence, ...The risk of dementia...was reduced irrespective of individuals’ genetic predisposition to dementia
. Association of lifelong exposure to cognitive reserve-enhancing factors with dementia risk: A community-based cohort study

You and your wife have the benefit of great knowledge on this forum. The Primer, written by a Stavia, a practicing family physician with APOE4/4 who is thriving at about age 58, in spite of two serious brain injuries, made me realize that my future was not written in stone. It is a handy guide to "low-hanging fruit" strategies that you can support for your wife. For example, while it's not healthy to be obese, some research suggests it's not an additional risk to be overweight, as long as the person is fit and doesn't have insulin resistance. Maybe your wife should take this opportunity to schedule some "me" time--I wish I had 20 years ago! What she does with that time should be her choice; I bet she'd love that as an anniversary, Mother's Day or birthday present this year. (Even as a "we got vaccinated" present!) You can also encourage your wife to talk to her doctor and maybe older family members about the cardiac risk factors her relatives had and how to monitor or test for those to stay ahead of that risk.

You also need some self-care. You are riding a rollercoaster right now--even if your wife is on the lazy river ride. You might want to consider one or more of these ideas--or brainstorm with a trusted family member or friend or therapist:
    *Tell your wife you are having a hard time with this and have decided to join this forum so that you can learn more and feel more of a sense of how to cope with the rollercoaster. If the feelings were reversed, you wouldn't tell her to stop worrying; you might even be glad she shared her fears with you.
    *Since you have dealt with anxiety and depression before, you may have used the self-talk strategies of visualizing yourself on the other side of this feeling.
    *People who have just been given a difficult medical diagnosis, or even have a spouse or child with one, often benefit from being told that it's normal to feel unmoored and even angry for a period of time. We have been there ourselves, or with our loved ones. It's awful--and it gets better with time.
    * Try out some ways to imagine a future far less grim than the one currently residing in your dreams. You can plan a trip for her 55th birthday, or for your 50th. You can talk together about your values and preferences for your 50's and promise to do it again for your 60's.
    * If anxiety is interfering with your life in a big way (and it sounds like it is) consider talking to your doctor about options for medications, if that is something that has helped in the past. No one gets a medal for suffering from gout or IBS silently--you shouldn't suffer silently either.

We feel best when we write our own stories. Write this one together with your wife, and only worry about the next chapter--not the ending credits.
4/4 and still an optimist!

AlB
New User
New User
Posts: 2
Joined: Tue Apr 13, 2021 1:35 pm

Re: Partner found out she's 4/4 - she's OK with it, I'm not

Postby AlB » Wed Apr 14, 2021 1:23 am

Thank you both for your considered replies.

I understand from your replies and what I have read so far that many on this forum manage to maintain a very optimistic outlook, something I hope to achieve - NF52 is absolutely right that at the moment I am very much on a roller coaster, and this exacerbates / is exacerbated by my underlying depression. Given the possible (though I agree certainly not definite) long term ramifications, I know this is a normal reaction during this period after receiving such results.

I know I just need to work on and adapt existing strategies to help me cope with the complex feelings and anxieties this has prompted until I get through this depression 'dip', without swamping myself with too much (often complex research based) information that it becomes obsessive and self perpetuating - I need info to process the doubts, but have to balance that against information overload fuelling my anxiety. By its nature depression makes me focus on the most negative outcomes, so positivity is hard and needs me to maintain significant effort over extended periods to see a brighter outlook, hard at the best of times, but nigh on impossible during a depressive period.

So, whilst I really do applaud and indeed envy the many on here who have reached a point of contentment, or even empowerment following the receipt of 4/4 results, I am still struggling to understand how it is legal or indeed morally justified for such information to be provided by DtC testing organisations in contradiction to seemingly endless research findings highlighting just such concerns, both for individuals and their partners (particularly those with pre-existing mental health conditions). But that's a fight for another place, and probably others to lead.

Many thanks again for the replies, I'm still fairly early in this 'journey' and my reading / processing continues, hopefully with a progressively more positive outlook

A

User avatar
floramaria
Support Team
Support Team
Posts: 1024
Joined: Tue Jul 04, 2017 11:22 am
Location: Northern New Mexico

Re: Partner found out she's 4/4 - she's OK with it, I'm not

Postby floramaria » Wed Apr 14, 2021 8:10 pm

AlB wrote:I understand from your replies and what I have read so far that many on this forum manage to maintain a very optimistic outlook, something I hope to achieve -
Many thanks again for the replies, I'm still fairly early in this 'journey' and my reading / processing continues, hopefully with a progressively more positive outlook
A
I also want to wish you well, AlB. Developing a positive and empowered outlook does’t happen overnight, especially when you got broadsided by unsolicited results. That is an extra level that you have piled on in addition to the information itself. This is all new stuff that you are dealing with. Be kind to yourself. As you say, you are early in this journey. I hope that this community can be a source of support for you.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
Qualified ReCODE Practitioner

Tincup
Mod
Mod
Posts: 2938
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: Partner found out she's 4/4 - she's OK with it, I'm not

Postby Tincup » Thu Apr 15, 2021 2:13 pm

AlB wrote:Hello, Newbie here.


4/4 Doc, Stavia, who wrote our Primer, said when she told one of her children, also a doc, he said, "that just means you have to live healthy." Stavia reflected on this and said he was correct.

I'm a 3/4, age 65 married to a 4/4 woman, age 61. When I tested my genetics through 23andM3 in 2014, in the US, the FDA enjoined them from providing interpretation. I downloaded the raw data and did my own analysis. If there was nothing to be done, then knowing your status would be pointless. However, it is our view that there are a vast number of things that can be done to influence the outcome, so knowing is extremely beneficial. My 30,000' view of ApoE4 is that it is really good at inflammation, which is great in an acute setting and bad in a chronic setting. It is also really good at surviving deprivation. This is a mismatch in a world of excess. If this mismatch is allowed, inflammation is sure to follow. The challenge is to adapt the environment to match your genetics. My wife and I consciously introduce deprivation into our lifestyle.

Also, life hands you many surprises. A family member developed an aggressive form of brain cancer at age 30. They are still alive at 33, beating the statistics. However, whatever risks their ApoE status may bring are moot. If they live long enough to where ApoE status makes a difference, it will be a huge win. Hence, do the best you can to be healthy for today and the future, but enjoy today, because that is what you have for certain.
Tincup
E3,E4

User avatar
Julie G
Mod
Mod
Posts: 8682
Joined: Sat Oct 26, 2013 6:36 pm

Re: Partner found out she's 4/4 - she's OK with it, I'm not

Postby Julie G » Sat Apr 17, 2021 8:24 am

AIB, I get it. As a 4/4, it's been tough on my husband as well. He's gotten uber-fit with me and largely practices the same regimen that I do which makes it much easier for me to follow.

While I certainly don't want you to unnecessarily catastrophize, you do mention some risk factors that your wife is facing— her obesity and likely perimenopausal/menopausal state. Both are modifiable risk factors. Creating insulin sensitivity and optimizing hormones with bHRT (if appropriate) can offer a tremendous amount of neuroprotection. I think you instinctively know that she's at higher risk... perhaps leading to your fears. I would encourage you to talk to her and help her to understand that there are things she can do now to protect herself for decades to come. The handbook portion of The End of Alzheimer's might be helpful and a good starting place.

Sending cyber hugs. You're clearly a loving husband. I want the best for both of you.


Return to “Getting Started”

Who is online

Users browsing this forum: No registered users and 1 guest