Help me understand what your APOE experience has been

[5Brains]

HI! I'm a 4/4 and hoping to chat with a few 4 and 4/4 women to get a better understanding of your experience:
Why you decided to find out your status and what it was like to find out, etc. If you're willing to answer a few questions like these, I'd be grateful as it will help inform a program I'm putting together for women.
Please let me know if you prefer email, text or phone.

Thanks! Lauren

[NF52]

HI! I'm a 4/4 and hoping to chat with a few 4 and 4/4 women to get a better understanding of your experience:
Why you decided to find out your status and what it was like to find out, etc. If you're willing to answer a few questions like these, I'd be grateful as it will help inform a program I'm putting together for women.
Please let me know if you prefer email, text or phone.

Thanks! Lauren

Hi Lauren,

As one of the Moderators and Senior Support Staff, and someone with ApoE 4/4 who found out my status in 2014 when 23&me didn't have to provide a "warning", I think I can speak for many women that many of us found out while looking for ancestry, or other health data, or simply because a doctor included it in a blood lab. If you take a look at Stavia's experience the Primer, you'll see how an M.D. with ApoE 4/4 reacted to the news, knowing she had a history of two severe brain injuries:

It’s very scary to open up 23andMe results or run your raw data through Promethease or similar and see red words flashing at you “high risk”. When I did this naively a year ago (2019 update: it's now several years ago and I promise the pain fades, and now I just live my life) I went to pieces and cried for a week. Thank heavens I found this group very soon and everyone rallied and helped me over those awful first weeks. The first thing is to stay calm and think carefully.

FWIW, I've seen women who joined this forum recently much more informed about both ApoE4 and advances in Alzheimer's preventiont than people whose experiences were similar to mine 9 years. ago.

Most of our members prefer to stay anonymous, and so might be reluctant to communicate by text or phone. You may want to offer the option of sending you a Private Message to offer their experiences.

It may also help if you tell us more about what you envision for this "program": An informational forum, a talk to a local group, a virtual social event? Of course, once you develop the program, you would not be able to promote it here, per the Community Guidelines.

Trust. Ulterior financial interests complicate our interactions. Do not self-promote or advertise.

https://www.apoe4.info/community-guidelines/

Nancy

[JULESt7]

My diagnosis of MCI came as quite a surprise. It was my spouse, who noticed my memory was off. After meeting with a neurologist and having a standardized memory test, it was determined that my memory deficits were serious. My doctor requested testing re APOE status. Bad news, double APOE4 genes. Post diagnosis was hard to take. A worrisome fate. I’ve spent many hours researching Alzheimer’s; specifically how APOE4 genes influence memory & related deficits. It’s a worrisome fate. I am trying to keep myself mentally and physically healthy. I walk four to six miles per week, and swim two hours a week. Perhaps, Geneticists and Alzheimer’s researchers will devise a safe and effective treatment to treat the disease.

[Lyre Taylor]

My diagnosis of MCI came as quite a surprise. It was my spouse, who noticed my memory was off. After meeting with a neurologist and having a standardized memory test, it was determined that my memory deficits were serious. My doctor requested testing re APOE status. Bad news, double APOE4 genes. Post diagnosis was hard to take. A worrisome fate. I’ve spent many hours researching Alzheimer’s; specifically how APOE4 genes influence memory & related deficits. It’s a worrisome fate. I am trying to keep myself mentally and physically healthy. I walk four to six miles per week, and swim two hours a week. Perhaps, Geneticists and Alzheimer’s researchers will devise a safe and effective treatment to treat the disease.

Hello there! As a support team intern , let me extend the warmest of welcomes to you on this site! I know that receiving a difficult diagnosis can feel overwhelming, but please know that you are not alone. I'm truly glad that you've found your way to this community. Here, you'll discover a wealth of understanding, support, and assistance.

I want to commend you for the incredible strides you've taken to prioritize your health. It's truly inspiring! Remember, while genetics may set the stage, your lifestyle choices hold incredible power. There's a famous saying that resonates deeply: "Genetics loads the gun, but lifestyle pulls the trigger." You're in control, and we are here to support you every step of the way.If you haven't already checked out apoe4.info, I'm happy to share several tools & resources to help you get the most out of your experience here. 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.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

Wiki Main Page contains a wealth of information.

If you are interested in learning more about other members check out Our Stories.

Again, I am so glad you joined our forum. Stay positive and curious. Please feel free to reach out anytime.

Warmly,
Lyre

[NF52]

My diagnosis of MCI came as quite a surprise. It was my spouse, who noticed my memory was off. After meeting with a neurologist and having a standardized memory test, it was determined that my memory deficits were serious. My doctor requested testing re APOE status. Bad news, double APOE4 genes. Post diagnosis was hard to take. A worrisome fate. I’ve spent many hours researching Alzheimer’s; specifically how APOE4 genes influence memory & related deficits. It’s a worrisome fate. I am trying to keep myself mentally and physically healthy. I walk four to six miles per week, and swim two hours a week. Perhaps, Geneticists and Alzheimer’s researchers will devise a safe and effective treatment to treat the disease.

Welcome!

I have been lucky to listen to many researchers in the field of Alzheimer's research over the last few years. Like you, I have two copies of ApoE4 and I also have a strong family history of Alzheimer's and vascular disease. Research is moving ahead very fast. One of the best discoveries is that exercise may keep your brain healthy for years to come. Exercise seems to help many different processes in the brain, and your choice of walking and swimming is great!

Below is the abstract (overview) of an 18-month trial of both aerobic (50% of participants) and stretching/balance exercise (50% of participants) in people with Mild Cognitive Impairment (MCI) who went to a gym and worked with a personal trainer 2-3 times a week. "Amnestic" MCI refers to cognitive impairments tied to memory, which is what you have experienced.

Both aerobic training and stretching and balance workouts had the same effect--people stayed at the same level overall in independence and in "executive function" (things like planning, organization, decision-making, time management) over 18 months--results that would be great for all of us!! I put the key points in bold, and the best parts in blue!

Abstract
Background
The EXERT trial (NCT02814526) was a Phase 3, multicenter, randomized single-blind study that examined the effects of regular exercise on cognition and other measures of brain function in a planned sample of 300 older adults with amnestic mild cognitive impairment (MCI).

Method
The Alzheimer’s Disease Cooperative Study (ADCS) coordinated the trial, in partnership with Wake Forest and the YMCA of the USA. Participants were randomized to moderate intensity aerobic training (AX), or to stretching, balance and range of motion (SBR) for 18 months. In the first 12 months, exercise was supervised 2x/week and completed independently 2x/week. All exercise was unsupervised in Months 13-18. Outcomes assessments were completed at baseline and every 6 months. The primary endpoint was 12-month change from baseline on the ADAS-Cog-Exec, a validated measure of global cognitive function. In addition, 12-month changes in the ADAS-Cog-Exec and CDR-SB were compared for EXERT intervention groups relative to other cohorts to estimate effects of intervention versus no intervention (i.e., “Usual Care”).

Result
296 participants were enrolled, and over 31,000 exercise sessions were completed during the first 12 months. Attendance remained high (AX: 81%; SBR: 87%), and >60% of participants reported continued exercise through the pandemic. Neither the AX group nor the SBR group showed 12-month declines on the ADAS-Cog-Exec and CDR-SB....

Conclusion
Global cognitive function did not change over 12 months of follow-up for MCI participants in EXERT, suggesting that both the AX and SBR interventions may have stalled cognitive decline. EXERT is the longest exercise trial conducted in MCI to date, and greater ‘volume’ of exercise may have provided more protection, regardless of exercise intensity. Both groups received equal amounts of weekly socialization, which may have contributed to this protection....

In this post hoc subgroup analysis study, we investigated whether the beneficial effect of an exercise intervention in patients with mild AD was driven by the patients’ APOE genotype.
We found that patients who carried the APOE ε4 allele benefitted more from the exercise intervention than noncarriers on cognitive, neuropsychiatric, and physical measures. These findings are in line with the results from epidemiological studies showing that exercise improved cognitive and physical performance especially in carriers of the APOE ε4 allele .
We found that patients who were carriers of the APOE ε4 allele in the exercise group maintained their performance in the SDMT test, whereas the carriers of the APOE ε4 allele in the control group deteriorated in performance. The effect of exercise on SDMT seen in this study is in line with the studies in patients with MCI [28] and in older adults [27] where executive function and performance on SDMT was improved by exercise. Furthermore, carriers of the APOE ε4 allele who exercise experienced an improvement in neuropsychiatric symptoms compared to a worsening in the control APOE ε4 carrier group.

Topline Results of EXERT: Can Exercise Slow Cognitive Decline in MCI?

I have been lucky to meet and work alongside several people with MCI and mild AD as a participant in clinical trials and as a member of an advisory board. It has opened my eyes to both the stigma of disclosing a diagnosis of MCI and the need to better understand how people with MCI can --and should--continue to be actively involved in their communities, and in doing what brings them joy.

As an example of that, here's an interview on Being Patient with a retired minister who has ApoE 4/4 and was diagnosed with MCI at the age of 57--a dozen years ago! It's about 25 minutes long and begins 17 seconds in: Rev. Dr. Cynthia Huling Hummel: “Here’s How I Think Alzheimer’s Clinical Trials Need to Change”

In the video, Cynthia does much more than talk about clinical trials. She talks about how people with a diagnosis need to continue to be actively involved in their communities, and in doing what brings them joy and gives examples of workarounds that allow her to live an active life independently. I think you and your spouse would both find this uplifting and hopeful. I know other people with MCI who joined support groups for MCI and found those helpful, and started art classes that they never would have considered before while working. Doing what you love is always a good practice.

Cynthia elsewhere has said she audits community college classes on subjects she likes (no homework!) joined observational clinical trials (where she has tests and provide blood samples, but is not in a drug trial) and has partnered with groups like Dementia Action Alliance, that believe that people with MCI, Alzheimer's and other diagnoses can advocate and speak for themselves. I'm not a member, and don't have any ties to them. But I do like the idea of people living with a diagnosis to have a strong voice, especially if they are speaking as someone with ApoE 4/4.

I hope you keep us posted about how you are doing and become an advocate with your friends and family to say "I'm living with, not suffering from" this diagnosis.

Nancy

[LeighBee]

Hi, I jumped on here to write a post and this seems as good a place as any to put it.
The topic is regarding testing, so seems relevant to this post and I am probably 1. looking to offload a bit, but also 2. to gather some advice.

So I'm 55 with no cognitive decline, my father is in end stage AD so I decided to find out my status. I am 3/4. I wasn't devastated. I decided to test my father to close the loop and decide what I would do with the information next. I had it all sorted in my mind... his mother also had dementia, so I was curious if he was a 3/4 or a 4/4.

I am doing the ReCODE training, so I came across the info on here about "Thinking about testing" which is an excellent resource and I have read the article and gone through the quiz. It is a great thought promotor for sure.

So yesterday my dads test results came back. My first response was that can't be right. He is 3/3. My second response was well he cant be my father then! Unlikely. The penny then dropped that my mother must be a carrier. She is 78, under the huge stress of ?10 years of my fathers decline into AD. She has no obvious cognitive decline, has good cognitive reserve and education. I did a bit of an audit of what she could do - probably a bit more exercise and a bit of diet modifications. She has a tendency to ruminate though and worry about things. Which is why I hadn't told her that I was a carrier. So... should I tell her that I suspect she is a carrier?

On one hand she is proactive about her health and we joke that we don't want her going the same way as dad. Goodness, I am not sure I could cope with a second parent doing all this. So this is my chance to help her.

The interesting thing is that my father is exactly the statistic we hear about - he doesn't have the genetics but does have AD. He had rugby concussions, severe sleep apnea, low exercise, social isolation, likely toxicity and poor glycaemic control.

So the whole exercise has been an eye opener to me and makes me realise how important the questions are to consider prior to testing.

Welcome any gems but appreciate I likely need to make this decision on my own. xxx

[NF52]

Hi, I jumped on here to write a post and this seems as good a place as any to put it.
The topic is regarding testing, so seems relevant to this post and I am probably 1. looking to offload a bit, but also 2. to gather some advice.

So I'm 55 with no cognitive decline, my father is in end stage AD so I decided to find out my status. I am 3/4. I wasn't devastated. I decided to test my father to close the loop and decide what I would do with the information next. I had it all sorted in my mind... his mother also had dementia, so I was curious if he was a 3/4 or a 4/4.

I am doing the ReCODE training, so I came across the info on here about "Thinking about testing" which is an excellent resource and I have read the article and gone through the quiz. It is a great thought promotor for sure.

So yesterday my dads test results came back. My first response was that can't be right. He is 3/3. My second response was well he cant be my father then! Unlikely. The penny then dropped that my mother must be a carrier. She is 78, under the huge stress of ?10 years of my fathers decline into AD. She has no obvious cognitive decline, has good cognitive reserve and education. I did a bit of an audit of what she could do - probably a bit more exercise and a bit of diet modifications. She has a tendency to ruminate though and worry about things. Which is why I hadn't told her that I was a carrier. So... should I tell her that I suspect she is a carrier?

On one hand she is proactive about her health and we joke that we don't want her going the same way as dad. Goodness, I am not sure I could cope with a second parent doing all this. So this is my chance to help her.

The interesting thing is that my father is exactly the statistic we hear about - he doesn't have the genetics but does have AD. He had rugby concussions, severe sleep apnea, low exercise, social isolation, likely toxicity and poor glycaemic control.

So the whole exercise has been an eye opener to me and makes me realise how important the questions are to consider prior to testing.

Welcome any gems but appreciate I likely need to make this decision on my own. xxx

Hi Leighbee,

You are carrying so much love and pain at the same time, for each of your parents. I want to gently recognize that you have probably not even had time to say to yourself or your friends and other family, "It is really hard to watch one parent slowly progress to the late stages of a disease that his mother had, and to know I have the same risk gene."

At 78, your mom is 6 years older than I am, and I have two copies of ApoE4 and last fall planned a great trip to Spain and Portugal. I'm not a savvy traveler--just someone who decided to revisit Spain after 50 years using apps and online forums! Your mom (and you) are like 25% of people worldwide (generally) with ApoE 3/4. According to a well-designed population based study of people in the U.S. and The Netherlands, people the age of your mom and me (I'm 72) who have 1 copy of ApoE 4 have a 20-25% chance of a diagnosis of EITHER Mild Cognitive Impairment (MCI) or Alzheimer's or other dementia by the age of 85, which is the current expected lifespan of our generation. That means she has a 75-80% chance of NOT having AD in her lifetime.

Your's dad's ApoE 3/3 status is what about 40-50% of people with AD have, which is less than their 70-75% share of the population. It's possible that your dad's dementia actually is caused by late-life effects of repeated mild traumatic brain injury (R-mTBI) from rugby, combined with coronary artery disease from poor glycemic control, sleep apnea (which can be both a cause and effect of TBI and cerebral vascular disease) and air, water and other toxins. Like many people now in their 70's and 80's, he would not have known about, or likely been able to avoid, most of those before they started affecting him.

At 78, your mom has two enormous protective factors: early high level of education (i.e. anything post-high school) and cognitive reserve . If she gets 2-4 days a week of moderate exercise, she's doing what recent research showed in especially effective in ApoE4 carriers--improving circulation, reducing inflammation, maintaining executive function skills (complex problem-solving). Here's a recent post in which I highlighted results of the EXERT study in people with MCI; they would be even more likely in someone like your mom if she's been a moderate exerciser for a while: viewtopic.php?p=92477&hilit=EXERT+study#p92477

You have a good handle on your mom's tendency to ruminate and worry, although I think most women of my generation thought that ruminating and worrying is how we forestalled problems! You might be able to help your mom understand how worrying and rumination is affecting her (and you) in seeing the various types of "cognitive bias" that we can all fall into here: CBT Techniques: 25 Cognitive Behavioral Therapy Worksheets

Most of us don't want to be told that we shouldn't worry or shouldn't assume the worst will happen, but it can be helpful to realize that some people are hard-wired pessimists, or learned through early experiences, to view situations as "personal, pervasive and permanent". Others are hardwired optimists (or like me can learn to) view most situations as "external, specific and temporary". An example your mom might identify with is thinking "ALL my friends are dealing with cancer, heart disease, Alzheimer's, falls. There's nothing to look forward to in turning 80. I m going to be a burden to my family soon."

You can ask your mom to talk about how she views her life and her future and ask her to think of ways that she is doing great at age 78. What she needs most, I suspect, is a mental and physical break from worrying about your dad for the last 10 years. I hope she can see how he is safe now and living in the present moment. She may have been socially isolated herself with caregiving, so this might be a good time to ask about her values and preferences.

If feasible, you could together make plans for a project or new or fondly remembered experience that she and you can do: A trip from New Zealand to Japan or Australia, a refresh for her home, a girls' day out for a mani-pedi or massage; a pet to keep her company and take on walks. At age 78, I don't plan to have a perfect diet; I plan to have an adventure that my future self will thank me for.

She and you both can live with the uncertainty of the future, and find joy in what makes you feel more alive. I want that for my husband and my own children if I am in the same situation as your dad.

Hugs from your mom's genetic "cousin".

Nancy

[LeighBee]

Thank you Nancy for your lovely and generous reply.

You have touched on many accurate points and yes, at present my wish is that the situation with my father would be completed. I know he wouldn't have wanted this but he was a fairly physical man, so his body is still holding on unfortunately. For now, Mum is trapped in the process with him, but the situation suggests it might only be a few more months.

I am proud of the fact that when mum was caregiving at home, we set up a project like you have suggested. It was called the The Joy Delivery and I grew, arranged and gifted flowers to people in our community, and mum was "the delivery lady". It got her out connecting with people and she enjoyed talking to people. Interestingly, once Dad moved into full time care, that directed need was not there any longer and slowly my emphasis has changed to this more academic pursuit. We joke at times about booking her a room in with Dad, but in reality, that is a long way off and while she probably isnt a natural optimist, I keep pushing her that way.

I will enjoy referring back to your note, so thank you again.

Leigh xxx

[Jackie6358]

Im 61 and my mother has Alzheimers and is 86 and we both carry one copy of the APEO 4 gene.
I found out through a DNA test to search for my father’s side of the family.
They say it only gives you a slight increase in the chances of developing AD but my mother hasn't been lucky.
She is so physically fit for her age and always has been.
Good diet, cycling , swimming and even at 86 can still walk up steps and has very little wrong with her joints. She only takes one blood pressure tablet and the doctors think physically shes fantastic.
Mentally there is not much left and I look at her and think if anyone should have dodge the bullet as they say it should have been her.
Her brother and sister are of a similar age and are both still active and mentally fit.
It scares me, I just think that if my mum can get it then I’m not confident that I will be so lucky.
I really wish Id never had that DNA test because that wasn't the answers I was looking for.
I feel like i’m living with a countdown and honestly hope something else gets me before my family have to watch me end up like my poor mum.

[NF52]

Im 61 and my mother has Alzheimers and is 86 and we both carry one copy of the APEO 4 gene.
I found out through a DNA test to search for my father’s side of the family.
They say it only gives you a slight increase in the chances of developing AD but my mother hasn't been lucky.
She is so physically fit for her age and always has been.
Good diet, cycling , swimming and even at 86 can still walk up steps and has very little wrong with her joints. She only takes one blood pressure tablet and the doctors think physically shes fantastic.
Mentally there is not much left and I look at her and think if anyone should have dodge the bullet as they say it should have been her.
Her brother and sister are of a similar age and are both still active and mentally fit.
It scares me, I just think that if my mum can get it then I’m not confident that I will be so lucky.
I really wish Id never had that DNA test because that wasn't the answers I was looking for.
I feel like i’m living with a countdown and honestly hope something else gets me before my family have to watch me end up like my poor mum.

Welcome, Jackie,

On behalf of the Support Team and this whole community, I'm so glad you posted here about your mum and you both having ApoE 3/4. Thank you for sharing your experiences. It's normal to have "heavy" feelings around ApoE4, with the knowledge being both empowering and sometimes daunting. It's true that someone your mother's age with Apoe 3/4 status had about a 20% chance of Mild Cognitive Impairment or a diagnosis of Alzheimer's by the age of 85. Just living to the age of 86 means she did in fact do everything right that was in her power. She just didn't have all the information we have now, and the information you will have in the net 10-20 years.

We now have a huge increase in the understanding of the many possible causes of Alzheimer's and vascular dementia, which your mum's high blood pressure may actually have caused more than Alzheimer's. We have ways to prevent those vascular problems in many people. Just within the last couple of years, we have blood tests which are being validated to show the early proteins associated with Alzheimer's (amyloid beta and tau) years before any changes in thinking. That in turn is leading to clinical trials of drugs. Your generation should be available to PREVENT, not just treat, these diseases within a few years.

I'm truly sorry that your wonderful mum is low living with Alzheimer's, and that you are having to grieve the loss of who she was, which she may be less aware of day by day. I hope like your mum, like mine, still finds reasons to smile and enjoy the small joys in life: family, memories from her childhood and youth, listening to music, eating favorite foods and using that physical strength!

My own mother died of congestive heart failure with moderate dementia at age 86. Yet none of her 4 children, all of us in our 70's and at least one (me) with ApoE 4/4 has heart disease or high blood pressure or the risks both of our parents had from that. We're not perfect, but we did have healthier air, water and access to exercise and health care than they had growing up--and that's even more true for you!

At your age you can confidently look forward to the news that I heard Alzheimer's researchers (who are not quick to predict success) say at a conference in 2023: "Alzheimer's will become a risk that we can prevent in most people through lifestyle and early interventions (education, health care), monitor for its earlier signs in those at higher risk, treat well before cognitive symptoms occur, and manage--the same as we manage many other conditions that led to hugh rates of death in previous generations."

My own children all have Apoe 3/4 and I believe that you and they are not on a countdown--and should live life knowing that your mother would want you to live in the moment with her now--but plan for a long and happy future for yourself.

Here are some resources about the current thinking in strategies that may be helpful, along with how to navigate our forum.

The Primer is written by Stavia, a practicing M.D. with ApoE4/4.

The How-To Guide shows how to quote members (use the " icon in the upper right of any post) so they get an email notification of your post. It also shows how to use the Search function for topics, and how to subscribe to topics of interest.

You have every right to be hopeful, Jackie!

Nancy