37, just discovered I'm ApoE3/4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
HopefullyOptimistic
Contributor
Contributor
Posts: 6
Joined: Thu Dec 01, 2022 8:55 am

37, just discovered I'm ApoE3/4

Post by HopefullyOptimistic »

Hi all, I know there is a Primer thread that may answer most newbie questions -- and I've done a ton of research myself these past few days after discovering my 3/4 genotype. I'm writing just for catharsis and support. From what I've read thus far this place is nothing but supportive and has done wonders to assuage my existential dread.

I recently had genetic testing done for reproduction and overall health and I requested to see what sort of predisposition I had to AD. Maybe that was a bad idea because I am now completely consumed with the news and re-considering if I even want to have children. Granted it has only been 3 days since finding out so maybe this will fall into the background but strangely it also feels like I have a newfound purpose in life. A dedication to healthy living and an obsession with AD research and progress.


My story & family history;

On my dad's side there is history of AD. My dad's parents however both lived into their 80s.
But his maternal grandfather, a heavy drinker, died at 63 from AD. My father, also an alcoholic, was diagnosed at 57 and also passed at 63 with what was believed to be vascular dementia / Lewy Body.

On my mom's side there is no history of AD. My maternal grandparents lived until 87 and 89.

We did not do genetic testing on my father but I am assuming that my 4 alelle was inherited from him. Which also leads me to believe that he inherited it from my grandma, who inherited it from her dad. She lived into her 80s, and only showed signed of cognitive decline in her late 70s. She had a poor diet, was agoraphobic, never worked out, etc. So I guess that's a comfort in some way?

Since my father's diagnosis 7 years ago, I stopped drinking excessively -- I have less than 3 drinks a month, if that. I quit smoking completely. No more marijuana at night to take the edge off. The social circles I used to run in laugh at my drastic transition from party guy to tee-totaler. It has been challenge, but a rewarding one.

My approach
I figure if there are lifestyle choices and therapies that can slow the progress of cognitive decline AFTER diagnosis that putting the Bredesen protocol into practice immediately makes perfect sense.

I have always been into IF and ketogenic diets, I never eat before bed. Always skip breakfast. But I never was super strict about them because I didn't have to be. I was fit for awhile, an athlete, wrestler, and crossfit freak. But I let COVID turn me into a sedentary person -- skinny fat would be an accurate description. I am getting back into it now and plan to do 45 minutes of cardio daily with another hour of weight training. And a 30 minute sauna (I only have access to IR which isn't ideal but better than nothing).

For my supps, I am taking Choline, Lion's Mane, Reishi, Cordyceps, and Phosophilipid DHA daily. Then it's Magnesium Threonate for sleep. Am I missing anything I should add to this stack? All my mushrooms supps come from Oriveda so I know they're not just filler.

I don't really have a question per se, just would love some support and some words of wisdom from the older Apoe4s here who have lived full and happy lives and are still managing their cognition into their 70s. I know genes aren't destiny, but watching my father waste away and the burden it put on my family haunts me.

It has made me think "how do you want to spend the next 20 years if that's all you have." If I were to map my life trajectory to my fathers.

Bless all of you. Thank you.
User avatar
Tincup
Mod
Mod
Posts: 3558
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: 37, just discovered I'm ApoE3/4

Post by Tincup »

HopefullyOptimistic wrote: Thu Dec 01, 2022 9:17 am re-considering if I even want to have children.
HopefullyOptimistic, welcome! Just wanted to frame this thought a bit. I'm 67 and a 3/4. I'm cognitively well. My mother passed with dementia at 86. She had a great life and even the dementia time wasn't awful. I'm sure if I'd asked her if she'd have rather not been born knowing what she would deal with in the last few years of her life, she'd have wanted to be here.

I've got two kids in their 30's. Both have my 4 gene. My daughter is on top of her lifestyle and if the 4 presents a problem for her, my hypothesis is it will be very late in life. My son sadly is 5 years into a glioblastoma brain cancer diagnosis (only 2% survive to 5 years). If he survives long enough for the 4 to be an issue, it will be a huge win.

You are young enough to make lifestyle changes (and it sounds like you are!) that can have a material effect on how much the 4 will impact you. Many of us here are very optimistic that we can mitigate the 4 risk.

Your reaction is natural. I learned of my risk 8 years ago and though I work to mitigate its risks, it is not something that I worry about. My 4/4 wife is one of 5 children {she's not my children's mother}. She let her sibs know her status years ago, but nobody cared. You can see here post here. The moral of the story is to take the steps you can to mitigate the risks and you'll likely do fine.
Tincup
E3,E4
Kmlseattle
Contributor
Contributor
Posts: 74
Joined: Tue Aug 09, 2022 9:46 am

Re: 37, just discovered I'm ApoE3/4

Post by Kmlseattle »

HopefullyOptimistic wrote: Thu Dec 01, 2022 9:17 am Hi all, I know there is a Primer thread that may answer most newbie questions -- and I've done a ton of research myself these past few days after discovering my 3/4 genotype. I'm writing just for catharsis and support. From what I've read thus far this place is nothing but supportive and has done wonders to assuage my existential dread.

...

My approach
I figure if there are lifestyle choices and therapies that can slow the progress of cognitive decline AFTER diagnosis that putting the Bredesen protocol into practice immediately makes perfect sense.

I have always been into IF and ketogenic diets, I never eat before bed. Always skip breakfast. But I never was super strict about them because I didn't have to be. I was fit for awhile, an athlete, wrestler, and crossfit freak. But I let COVID turn me into a sedentary person -- skinny fat would be an accurate description. I am getting back into it now and plan to do 45 minutes of cardio daily with another hour of weight training. And a 30 minute sauna (I only have access to IR which isn't ideal but better than nothing).

For my supps, I am taking Choline, Lion's Mane, Reishi, Cordyceps, and Phosophilipid DHA daily. Then it's Magnesium Threonate for sleep. Am I missing anything I should add to this stack? All my mushrooms supps come from Oriveda so I know they're not just filler.

I don't really have a question per se, just would love some support and some words of wisdom from the older Apoe4s here who have lived full and happy lives and are still managing their cognition into their 70s. I know genes aren't destiny, but watching my father waste away and the burden it put on my family haunts me.

It has made me think "how do you want to spend the next 20 years if that's all you have." If I were to map my life trajectory to my fathers.

Bless all of you. Thank you.
Welcome Hopefully Optimistic!

As exhibited by the response from TinCup, your observation about this site being a supportive community is a good one. I am sure you will receive plenty of other responses to your post. I too, have tested with ApoE4 heterogeneous and my mother recently passed away after a 10-year battle with dementia. As you have described, it can be a very overwhelming experience to process your diagnosis and the various ways to move forward. It is obvious to me that you have very strong qualities of curiosity and love of learning. These qualities will serve you well as you go.

As a welcome intern on this forum, I'd like to make sure you are aware of several useful resources. First of all, the Primer is authored by a member physician who carries two copies of the APOE-ε4 allele. The Primer offers accessible science background and prioritized sensible preventative measures. Other good resources include the search engine on PubMed, and the internet at large in your quest for information.

Another useful resource is the WIKI. Here you can use the Table of Contents or search on various topics and treatments.

Finally, a great place to read about the experiences of other members is Our Stories. Feel free to post follow up questions to any posts of interest. If you'd like, you're more than welcome to post your own story, as well.

Please feel free to continue to use this site in whatever way works for you. I hope the supportive nature of this community will be helpful to you, both on an intellectual as well as a mental/spiritual basis. I encourage you to post questions, comments and concerns.

All the best,
Kathleen
HopefullyOptimistic
Contributor
Contributor
Posts: 6
Joined: Thu Dec 01, 2022 8:55 am

Re: 37, just discovered I'm ApoE3/4

Post by HopefullyOptimistic »

Apologies, wasn't paying attention and inadvertently used my mod powers to edit your post instead of quoting you to my own post. Sorry!!
HopefullyOptimistic wrote: Thu Dec 01, 2022 2:55 pm My fear now is that I will become obsessive about the diet, lifestyle, etc. While that's a good thing, I worry that it may come at a detriment to socialization. Celebratory dinners with friends. Anniversaries. Holidays. Date nights. Everywhere I look now all I see are seed oils, sugar, contaminants and garbage that is putting em at risk of AD.
Well I'm "that guy." I ended up with afib 18 years ago. Had a 2.5 month episode in the first 4 months. I constructed a plan to keep the afib at bay, which included moderating exercise (chronic fitness was my path to afib), while remaining fit, electrolytes and lifestyle. I also got the doc to prescribe a med I can use on demand to convert back to normal rhythm quickly. Afib is generally considered a progressive illness. I've generally gotten 1-3 episodes/year lasting 1-3 hours. A few years ago a friend from childhood also got afib. I offered to coach him to see if we could mitigate the afib. He declined saying I had "a 6 sigma" lifestyle and he had no interest :lol: So then I offered to point him to the best ablating EP in the world, if he felt he needed an ablation.

As mentioned, my wife is a 4/4. We socialize and it really isn't an impediment. Our friends know we do what we do, and that's OK with them. We often host gatherings at our home. We feed our friends the cr@p they want (like our T2 diabetic friends that want full sugar soda) and we eat the stuff on our plan. When we go out with others, we either bring our own food or fast. I tip servers well when I'm sitting at a table fasting. In our age group, the general population is starting to fall apart. I weigh what I did in grade 10 and am actually leaner now than then. I don't have physical impairments. I'm not on a laundry list of meds. I few days ago I was out shoveling snow at 18 deg F wearing only shorts, no shoes, shirt, gloves or hat and we have a lot of concrete to shovel. Most neighbors use a snow blower.
User avatar
Tincup
Mod
Mod
Posts: 3558
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: 37, just discovered I'm ApoE3/4

Post by Tincup »

HopefullyOptimistic, tagging you so you see the above. As I mentioned, I inadvertently hit the edit button and not the quote button on your post when I responded. Didn't realize till I'd submitted it and it was too late. My appologies.
HopefullyOptimistic wrote: Thu Dec 01, 2022 2:55 pm
Tincup
E3,E4
HopefullyOptimistic
Contributor
Contributor
Posts: 6
Joined: Thu Dec 01, 2022 8:55 am

Re: 37, just discovered I'm ApoE3/4

Post by HopefullyOptimistic »

No worries TinCup. Your posts have been wonderful for my mental health and calmed my spiraling thoughts. I had a moment there where I felt like I was already diagnosed with AD and the future felt bleak. Now it does not.

I have yet to share my genetic test with anyone in my life, including my wife, mom and sister as I know it will hang on their minds like it does mine but your wife's Christmas letter inspired me to share in a similar way.

The more I think about the Apoe4 allele and how it is only recently that geneticists identified it as a risk factor, the more I find comfort in knowing rather than ignorance.

My only struggle is understanding the math behind 2-3x and 10-12x greater chances. If the average 3/3 has a 25% chance of getting LOAD, what does 2-3x or 10-12x do to those chances.

And of that 25% getting LOAD how many are practicing healthspan techniques.
User avatar
Tincup
Mod
Mod
Posts: 3558
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: 37, just discovered I'm ApoE3/4

Post by Tincup »

HopefullyOptimistic wrote: Fri Dec 02, 2022 9:24 am My only struggle is understanding the math behind 2-3x and 10-12x greater chances. If the average 3/3 has a 25% chance of getting LOAD, what does 2-3x or 10-12x do to those chances.

And of that 25% getting LOAD how many are practicing healthspan techniques.
I haven't looked at these numbers in quite a while, but I think 3/3's have a 10% chance. I'm going to ping NF52 as I think she may have posted better data.
NF52 wrote:
Here is a link to one of her posts.

Also there are places in the world where the E4 doesn't show a LOAD increase or decrease in longevity. Specifically in more primitive populations. My 30,000' view is that E4's are really good at surviving deprivation and are also good at inflammation. Surviving deprivation in a society of excess is a mismatch, which I view I must rectify by imposing some deprivation myself. Inflammation is great surviving acute insults (getting infected from stepping on a stick when you come down out of the trees or live with lots of parasites), but not in an acute setting. Hence doing things to minimize chronic inflammation are a hot option for me.

{edit}
In my age group, falls are a big health risk. Hence when you go to a doctor they commonly ask if you've fallen recently. I have to ask which ones do you want to talk about? Leading rock climbs, alpine skiing, or off my slackline that I have at home and am on daily?
Tincup
E3,E4
HopefullyOptimistic
Contributor
Contributor
Posts: 6
Joined: Thu Dec 01, 2022 8:55 am

Re: 37, just discovered I'm ApoE3/4

Post by HopefullyOptimistic »

I may have mixed up the numbers. 10% seems almost like a rounding error. And like NF52's longer post stated -- the statistics are a mess anyway and they really set you down a dark path when you first get the results. If APOE3/3s can still get LOAD then APOE3/4s can also NOT get LOAD. Framing that up in my mind has been helpful.

I share her 30,000' view of things. I am rarely ever sick and when I am it is always mild, my wounds heal in days, I have never been overweight, all my blood work is pristine (I have been routinely getting it checked every 6 months since I was 30. A bit OCD when it comes to health). I've always been one of those "he can eat whatever he wants and stay skinny" type of guys much to the frustration of my sister.

My father was a fit and athletic man but I hope that his other lifestyle choices - namely the daily heavy drinking (6+ a day) that led to poor sleep - was the cause of his early onset and that my sobriety may be my saving grace.

He had a stroke at 53 and was diagnosed at 57 with MCI. He continued to drink heavily despite the doctor telling him to stop and myself and my mom begging him. By 60 he was immobile and mute. At 63 I stood by his side while he faded in hospice. I hope that the choices I make now will stop me from sharing a similar fate.

Now my biggest hurdle is how much I'm going to miss ice cream and cheese.

Bless you again for taking the time to share with me.

I hope that in the future I can show similar support to the recently diagnosed.*

-Andrew
User avatar
Tincup
Mod
Mod
Posts: 3558
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: 37, just discovered I'm ApoE3/4

Post by Tincup »

HopefullyOptimistic wrote: Fri Dec 02, 2022 11:15 am My father was a fit and athletic man but I hope that his other lifestyle choices - namely the daily heavy drinking (6+ a day) that led to poor sleep - was the cause of his early onset and that my sobriety may be my saving grace.

He had a stroke at 53 and was diagnosed at 57 with MCI. He continued to drink heavily despite the doctor telling him to stop and myself and my mom begging him. By 60 he was immobile and mute. At 63 I stood by his side while he faded in hospice. I hope that the choices I make now will stop me from sharing a similar fate.
One time during the last few years of my mother's life, I happened to sit next to a woman on a flight who ran a large memory care home. She told me how alcohol could bring on a dementia that mimicked AlzD. Wasn't an issue so didn't do further investigation.

As to ice cream and cheese. In autoimmune testing, I react to all dairy. My wife doesn't and our doc, Steven Gundry, has her eat a small amount of goat or sheep cheese daily because of the short chain fatty acids in them. He talks about these in this book, "Unlocking the Keto Code." Depending on what you are avoiding, there are some great recipes in the keto world for things like ice cream.
Tincup
E3,E4
HopefullyOptimistic
Contributor
Contributor
Posts: 6
Joined: Thu Dec 01, 2022 8:55 am

Re: 37, just discovered I'm ApoE3/4

Post by HopefullyOptimistic »

Rather than create a new thread @TinCup. Are there any members of this forums that have mutations on PSEN1, PSEN2, or APP? Or any geneticists that may be able to help me interpret some of my other results.


23andMe is showing a ton of PSEN1 variants. But all homogenous alleles that are listed as "common in clinvar" and not pathogenic. But I am still scared beyond words.
Post Reply