Interested in stories about 4/4 folks

[kayakmac08]

Hi all,

My name's Justin. I just found out that I'm e4/e4, through 23andme. Despite the unsettling news that my brain is (probably) hardwired to self-destruct in the next 30-40 years, I feel very blessed to be finding this out in my early 30s, with lots of time to pursue prevention.

But it's been a bit of a lonely road so far. While I've been learning a lot about the science behind AD prevention strategies, and about about the link between Apoe4 and AD, I have yet to meet anyone else with the 4/4 genotype (my parents are now in the process of getting tested, so that may change soon...). I know there are at least a few of you floating around out there, so I'm just hoping to meet you and hear about your journey.

For those comfortable with sharing, I'm especially interested in how things have gone for you as you've pursued prevention/treatment. And I'm curious about family history, how you found out about your genotype, and how your parents have fared, since they each have at least one copy of the e4 allele.

Another random thing I'm wondering about is if there are any stereotypical "phenotypical" characteristics associated with being 4/4--like trends when it comes to physical appearance, personality, mannerisms, interest, cognitive issues that show up early in life (or at least well before cognitive impairment proper). I've read that Apoe4 alters brain development and may be associated with cognitive difficulties besides memory loss. I'm interested in this partially because I've always had certain weaknesses in executive functioning and attention, and a kind of disorderly and impulsive mind, despite being fairly (?) intelligent and functional overall. I'm wondering if this is common in 4/4 people. What's more, I've heard at least one AD expert (Richard Isaacson) make some (sort of weird) comments about how he can "sense" when a patient is 4/4 based on their physical appearance, mannerisms, personality and handwriting. Sounds kooky, but you never know.

Well, anyway, I'm happy to hear from anyone, and look forward to sharing my journey with other Apoe4 folks.

Thanks!
Justin

Anyway, I'm glad to be a part of this online community

[Tincup]

Another random thing I'm wondering about is if there are any stereotypical "phenotypical" characteristics associated with being 4/4--like trends when it comes to physical appearance, personality, mannerisms, interest, cognitive issues that show up early in life (or at least well before cognitive impairment proper).
Justin

Hi Justin. Welcome.

I don't have a specific answer to your question. I'm a 3/4 married to a 4/4.

One thing that has been shown is 4's can exhibit cerebral glucose processing deficits as early as their 3rd decade. I related this story about my mother. Not sure if she was the parent I got my 4 from. Dad died at 77 from cancer, without cognition issues. Mom died at 87 with dementia.

My 4/4 wife is cognitively well at age 61 and I'm well, too at age 65. Our doc, Steven Gundry, has 4/4 patients that drive to see him in their late 80's and 3/4's who are in their 90's (transcripts linked here).

I personally think there is a lot that can be done, especially starting early. I look at 4 alleles as a mismatch between environment and genetics. 4's are good at acute inflammation and surviving deprivation. A society of inactivity, no thermal (heat/cold) challenges, and 24/7 food (processed!!!) availability, it a huge mismatch. I fast at least 16 hours a day, just finished a 5 day fast a week ago. Workout daily with KAATSU, optimize breathing to increase CO2 tolerance, meditate, focus on sleep & etc.

[lgoring]

Hi all,

My name's Justin. I just found out that I'm e4/e4, through 23andme. Despite the unsettling news that my brain is (probably) hardwired to self-destruct in the next 30-40 years, I feel very blessed to be finding this out in my early 30s, with lots of time to pursue prevention.

Anyway, I'm glad to be a part of this online community

Hello Justin and welcome to the ApoE4 community!

I am happy to see that you are hopeful about prevention. I found out that I was an E4/E4 in my mid 20's and I worked with my primary care provider on a holistic plan that I try to stick to daily - supplements, food, exercise, stress management - but I am definitely an amateur being so young. Luckily, there are many individuals on this site that will be able to help you out. One place to start is the Primer thread posted by a physician. You may find this interesting if you haven't found it already.

Some other helpful tips and tricks to navigate the site include the How-To Guide. This guide is a great resource I found helpful when I started posting. 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 this button will automatically alert the member of your response. It really helps keep the conversation rolling.

If you have any questions about responding on the site please let me know!

See you around the forum,

lgoring

[rrmolo]

I'm 4/4, 80, walk lots, cycle, strength train, dance, meditate, read, play lots of bridge (now on the computer) and generally feel pretty normal. I found out through a research study I enrolled in because my dad had dementia. They mistakenly told me my blood results. On retrospect it was a blessing as I've come to learn so much more about what I can do to stay healthy. Take it a day at a time. You're young! Enjoy what you have right now! You're moving way too fast...slow down and take some deep breaths.
We're all on this journey together...we must find the blessings in each day.

[TheresaB]

For those comfortable with sharing, I'm especially interested in how things have gone for you as you've pursued prevention/treatment. And I'm curious about family history, how you found out about your genotype, and how your parents have fared, since they each have at least one copy of the e4 allele.

I’m guessing you haven’t had many responses because many of us learned our status many years ago, the novelty has worn off, and now we’re just living a normal life, a new normal after learning our status, but normal neverthless.

Many of us who hold one or two 4s have come to understand the frailty of our ApoE4 allele comes largely from recent dietary and lifestyle exposures. For 96% of humanity everyone was an ApoEε4/4, so obviously our genetics served man well. However, modern lifestyle and diet has brought drastic changes with respect to diet, chemical exposures, lighting changes, medications, stress, etc. Yet it takes 40,000 to 100,000 years to physiologically adapt to changes in diet and environment. So many of us have changed our diet and lifestyle to live more “ancestrally.”

I am in my 60s, experiencing no cognitive issues, and in no way do I anticipate my brain to self-destruct. I attribute my optimism to living a basically healthy life most of my life and more importantly to the changes I made after starting to read from these forums back in 2014. My biomarkers are now much better and I plan to keep them that way.

I admit I was shocked to learn my 4/4 status as no one in my family has had Alzheimer’s. My grandmother developed dementia in her late 90s, but I give that a pass. There have been other family health issues (mother passed of cancer, father with atherosclerosis) but it's hard to say the importance ApoE4 interplay.

Regarding ApoE4 and brain development, you may wish to read through this thread apoe4 children have lower IQ`s ?. In particular read the cited paper published earlier this year Genetic Burden for Late-Life Neurodegenerative Disease and Its Association With Early-Life Lipids, Brain, Behavior, and Cognition which held this conclusion, “We found no evidence that genetic burden for late-life neurodegenerative diseases associates with early-life cognition, internalizing behavior, or global brain structure.”

I am also not aware of any stereotypical "phenotypical" characteristics associated with being 4/4. ApoE4 is an important gene, but we hold many other important genes, not to mention the importance of epigenetics, the mitochondria we inherit from our mother, our inherited and nurtured (or starved/destroyed) microbiomes, an individual’s personal fat threshold, environmental exposures, etc.

I find it interesting that Richard Isaacson has made comments about how he can "sense" when a patient is 4/4 based on their physical appearance, mannerisms, personality and handwriting, because I’ve met a number of other 4/4s over the years and we all look, act, and have different personalities to me. The only common “characteristic” that I’ve heard cited has come from Dr Steven Gundry who’s been testing for ApoE4 among many other biomarkers in his patients for ~20 years, he says he can tell an ApoEε4 from their love of cheese, which he says is not our friend.

[Morazan]

Hi Justin, I don’t know how universal it is, but definitely in my family there seems to be an association between the gene and having a “disorderly and impulsive mind” ...and also musical talent... and yes, loving cheese. But you could just as easily characterize our minds as “curious and creative,” or “marching to a different drummer.” And hey, APOE4 protects against intestinal parasites, so we have that going for us. You are indeed lucky to be so young and to have so much time to focus on prevention, as well as to enjoy future medical breakthroughs. The important thing — the only proven preventative measure — is regular, blood-pumping, vigorous exercise, so focus on that. It’s hard for me, in mid 50s, to re-envision myself as an athlete, but I’m trying. I can’t afford all the blood testing and blood tweaking that others seem to be doing, and I’m not sure I buy into it, since many of the protocols contradict each other. Eat more plants, good fats, less junk, and less in general, is the takeaway.

Meanwhile, I’m curious if your gene discovery has affected your thoughts on having children. It has definitely affected my daughter... not only the worry of passing on the genes, but also of not being to count on grandma being around in sound mind to help out. It’s sad, but no sadder than the thousands of other ailments that plague the human race. Here’s hoping the scientists who brought us the Covid vaccine will next focus on a warp speed solution for Alzheimer’s.

[Starfish77]

Hi Justin, I haven't looked at the APOE4 site for a long time. I got here by accident. I was doing a genealogy search and must have hit a wrong key and the site popped up so I logged on. I then saw your message. I had to smile reading about your description of yourself.
It sounds like me with a couple of differences. I will be 84 this month and am female. I discovered I had ADHD when I was 60. I discovered I was an e4/e4 when I did 23andme about eight years ago. I looked into testing so that I would have a baseline when I got older in case I had mental issues so I could know if I had AD or just ADHD. They did very comprehensive testing, about 3.5 hours.
They said I had tested well and had no signs of impairment. They said I could come back for retesting at any time. I haven't found it necessary.

I don't think I noticed anything that the e4/e4s that I have known had in common. The people who come to this site because they want to get more information and continue with it probably have more intellectual curiosity and ability to follow through than the ones who never bother to look up any additional information. That might make us look as if we had something in common.

About disorganization, I am a hoarder, I always think almost everything has real possibilities to repurpose or repair. I collect everything and always have big plans to get organized. I finally have accepted that when I die, someone is going to get lots of bargains, just like I did at Auctions and EBay over the years. Just be yourself and whatever that is, is fine that is if you are kind to other people. You don't get any pass to treating others badly. You do need to keep yourself as healthy as you can and the APOE4 site will give you lots of good information. I am in much better health than I would have been without this site. Welcome!

[CarrieS]

About disorganization, I am a hoarder, I always think almost everything has real possibilities to repurpose or repair. I collect everything and always have big plans to get organized. I finally have accepted that when I die, someone is going to get lots of bargains, just like I did at Auctions and EBay over the years. Just be yourself and whatever that is, is fine that is if you are kind to other people. You don't get any pass to treating others badly. You do need to keep yourself as healthy as you can and the APOE4 site will give you lots of good information. I am in much better health than I would have been without this site. Welcome!

I LOVE this Starfish77. Thank you for posting.
Carrie

[kayakmac08]

Thank you so much, everyone, for your responses! It's informative and in many cases encouraging to hear your stories.

[NFS_918]

Hi Justin,
I'm 45 yo woman, do not "love" cheese (I'm just OK with it), and recently found that I'm e4/e4. I'm not sure if there is a common e4/e4 pattern, but I can tell you a bit about me. I'm a former college athlete (track, climbing, and basketball), always did great in school, have a Ph.D. in microbiology/virology from a top institution and have a great career. I have a very academic work and rely on my executive functions and memory to perform well. So far it is going well. I'm a just bit concerned, but not particularly scared about my e4 status. Three of my grandparents lived 95+, and only one of them developed dementia at 90+, which doesn't really count for me. So there is something else that protected them from developing the disease. My mom at 68 is currently finishing an MBA.

I should add that I'm following Dr. Bredesen's protocol partially. I do 14-16h of daily fasting, exercise, and eat mostly a Mediterranean diet. As supplements, I only take VitD and Omega3, for now. I do a yearly bloodwork to look at diabetes, hormonal, cholesterol, etc markers.

I hope this is useful. Do not worry too much- just watch your diet and keep your mind and body active. Scientists are working hard to find us a cure soon.

Best,
N.