Just discovered I'm 4/4, rocked.

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Trevor
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Just discovered I'm 4/4, rocked.

Postby Trevor » Fri Jan 31, 2020 12:11 am

Hi, I'm a 35 year old male from Canada. I'll try to share what's brought me here.

A few months ago my Grandmother passed away from Alzheimer's. Her Mother, my Great Grandmother, had suffered from it before her. My Mom just turned 64 and was a little anxious, knowing it had come for her Mom and Grandmother, and of course, being her son, I was too. I decided to get us 23andMe tests as a Christmas gift and after I studied a little about how Alzheimer genetic testing works, I fully expected each of us to come back 3/4 and be ok with that. Well, I was half right. My Mom did come back 3/4. I came back 4/4.

It's hit me a lot harder than I could've predicted, knowing that I have what is a fairly rare roll of the genetic dice and a hugely increased risk of AD. I was really expecting 3/4 for me, as to the best of my knowledge, there's no real AD or dementia in my Dad's side of the family. My Mom took her news fine, but I've been stunned by mine all day. I feel like a ceiling is slowing lowering onto me, like there's a limit to my life now.

I've always been more of an indoor kid, the brainy one of the family. I love reading and learning new things. I could deal with some pretty severe physical problems if I knew I still had my mind intact, and the idea of losing any bit it, of losing myself, terrifies me. My Grandma was smart, kept extremely active socially, did crosswords, danced every week, and it was horrifying to see her personality and memory fade, and then her ability to even understand or communicate.

Obviously, I have a huge fear of Alzheimer's hitting me when I'm 55, 65, 75. But what scares me just as much is the here and now. I have a lot to learn about Alzheimer's, but I know the damage builds over time. My mind, my mental sharpness, it's super important to me, and just the idea of it slowing eroding away year by year until the actually disease presents itself in it's obvious forms, that's what's paralyzing me. Already in the last two or three years I've noticed not being quite as mentally quick as I used to be, forgetting things a little more, a little duller at times, some brain fog. I chalked that up to hitting my mid-30s and aging, I mean, my body is slowing/sagging a little bit too, but now in the wake of my Grandmother's death and this test result, it's hard not to just constantly worry that it's part of a slow process.

I've spent some of the day reading online. I'm going to read The End of Alzheimer's by Dale Bredesen, I've found this forum, and I'm going to try to make positive changes. I don't drink, smoke, or hit my head (More than the average klutzy 6'2" man, anyway), but I'm overweight and haven't had a physical in my adult life, so I know those two things need to change. I actually decided to start losing weight a year ago and have gone from 285 to 235 in that time, although I still have another 35 to go to hit that normal BMI. I think the harder part for me is it sounds like I'm going to have to avoid carbs and sugars, and those are my two huge weaknesses. I'm a carb junkie with a sweet tooth and I've lost the weight by regularly exercising and eating a diet that's very low in calories and fat but still high in carbs and processed sugars six days a week, and then allowing myself one cheat day a week to let loose. It's worked for my weight, but obviously, I'm now far more worried about what my brain needs than what my waist does.

I'm kind of in awe and how proactive and brave you all seem to be. I'm terrified and depressed and feel kind of paralyzed. Hopefully that's just the shock of learning this and it wears off. I know my next step should be seeing a doctor and getting some blood tests, but I'm not even sure what I should say and what I should ask for. Thanks for creating this forum.

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Re: Just discovered I'm 4/4, rocked.

Postby mountaineermd » Fri Jan 31, 2020 5:59 am

Trevor, Finding out that you are 4/4 is your wake up call to start living a healthy life style. Alzheimers is a disease of modern civilization, highly correlated with refined sugars, flour and seed oils. You may have a genetic risk, but you can significantly minimize that risk thru epigenetics. In addition to Dale Bredesen's book, I would recommend The Obesity Code by Jason Fung, Lifespan by David Sinclair, and The Switch by James Clement. Once you gain control of what you eat, and when you eat (time restricted eating), you can turn on autophagy, which is IMO the key to preventing Alzheimers as well as many other diseases of modern civilization. You now have a very strong incentive to make the change. There are several good podcasts on You tube interviewing Jason Fung, David Sinclair and James Clement to get you started. So start the journey, Mountaineermd.

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Re: Just discovered I'm 4/4, rocked.

Postby NF52 » Fri Jan 31, 2020 8:05 am

Trevor wrote:Hi, I'm a 35 year old male from Canada. I'll try to share what's brought me here.
... I fully expected each of us to come back 3/4 and be ok with that. Well, I was half right. My Mom did come back 3/4. I came back 4/4...

Hopefully that's just the shock of learning this and it wears off. I know my next step should be seeing a doctor and getting some blood tests, but I'm not even sure what I should say and what I should ask for. Thanks for creating this forum.
Hey Trevor,

This is a virtual hug coming your way from someone who very much could be your virtual mom--and a virtual Canadian, since I spent most of my life in the part of NYS that is closer culturally and physically to Canada than to NYC.

More importantly for what's rocking your world: I'm also a 67 year old ApoE 4/4. I too was the "indoor reader" of the family and still view myself as a lifelong learner. You can be that person for decades more! I went back to get another graduate degree at age 57 at a great university--and enjoyed it as much as college 40 years earlier. Since then, I've had a variety of challenging roles that required me to learn new skills, not just dust off old ones.

I'm not unique: I know someone with 4/4 who has moved across country to head up a prestigious law program; another who is a state-appointed advocate for people in assisted living (and is older than some of them), another who gives presentations to community groups and legislators to bring about legislative changes, another who wins bridge tournaments at a level that matches her skill 30 years ago. I was recently in a clinical prevention trial for healthy people ages 60-75 with ApoE 4/4--and they were able to recruit hundreds of us! So if we, with a background in which none of us knew what was healthy for us, can still function well into our 60's and 70's and beyond--so can you!

You are not your ancestors and their fate is not your fate!
Your grandmother and great-grandmother may well have had typical undiagnosed or untreated health problems in those generations:
* High blood pressure: the rule I learned as a kid was "your age plus 100= a great blood pressure" !
* Coronary heart disease: Men died of heart attacks at young ages (my dad died at 67); women were thought to be immune. The first time my mother saw a cardiologist was at the age of 80; when she had atrial fibrillation and congestive heart failure.
* High cholesterol: No one had their cholesterol tested; everyone assumed that highly processed foods were safe loaded with trans fats were safe.
* Low thyroid and low Vitamin B-12: Again, no one tested for B-12, which tends to drop with age and is important for brain health.
* Second-hand smoke in the home, workplace, restaurants, etc. And widespread pollution: ask you family if they remember when Lake Ontario's fish would kill you and Lake Erie caught fire. Or when "acid rain" came to Canada from factories in the Midwest.
* A perception that women should NOT exercise in public, except in sports like golf, or maybe tennis. My mother loved to play tennis and softball as a kid; but REFUSED to go into the sparkling gym a mile from her home because it would wreck her carefully permed hair.

I could go on, but the point is that you should view your life as on a completely different path than theirs!

Here's some more good news:
Those changes you see in how fast you think and how sharp you feel may be caused by glucose spikes and dips from the high carb diet. I totally followed a diet like that 30 years ago--we actually were told "bagels are your friend; nuts will ruin your colon and what the heck is an avocado!" So follow some of those links that have been suggested, and read our Primer for basic strategies.

GENES ARE NOT DESTINY! Here's just some of the research being done on ApoE 4 and on Alzheimer's in general:

* Machine-replicated human induced pluripotent stem cells (iPSCs) from people with ApoE 2, which confers immense resistance to Alzheimer's, is currently a hot topic of research. It may be possible to use the gene editing CRISPR technology to "clip" out one of those ApoE 4 genes and replace it with ApoE2, which provides exceptional resilience to Alzheimer's disease. (The first examples of editing out the sickle-cell anemia gene are now being done in humans.)
* Lifestyle studies such as the FINGER study from Finland show conclusively that basic strategies of controlling insulin resistance, blood pressure, promoting a healthy diet (maybe Mediterranean, maybe keto--lots of debate on this!) and having exercise that raises your heart rate to a moderate level (high-intensity interval training) as well as social engagement, cognitive challenges (check that box already for yourself) are all linked to delaying or preventing dementia--even in people who don't start until their 50's or older!
* Billions are now being spent around the world on basic and applied research and clinical trials related to Alzheimer's and other dementias with most of the funding now geared toward collaborative efforts by national or international consortiums using sophisticated machine learning and statistical analysis to speed up and dive deeper into complex factors that may be inter-acting to cause the complex, multi-factorial disease we currently call "Alzheimer's".

My three adult children are all ApoE 3/4. I don't worry about them; and I don't want you to feel paralyzed by this news. You have knowledge--which is always the best start to a complex issue. Give yourself time to ride the rollercoaster of emotions, knowing that it will get better. You don't have to be perfect; your brain is going to be a great partner as you figure out what works best for you!
4/4 and still an optimist!

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Melanie R.
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Re: Just discovered I'm 4/4, rocked.

Postby Melanie R. » Fri Jan 31, 2020 10:07 am

Trevor wrote:Hi, I'm a 35 year old male from Canada. I'll try to share what's brought me here.

I'm kind of in awe and how proactive and brave you all seem to be. I'm terrified and depressed and feel kind of paralyzed. Hopefully that's just the shock of learning this and it wears off. I know my next step should be seeing a doctor and getting some blood tests, but I'm not even sure what I should say and what I should ask for. Thanks for creating this forum.


Hello Trevor (from a fellow Canadian on the west coast!) and welcome to the site,

We're so glad you found us. This is a supportive community and one where we hope that you can gain the information that you are looking for, and in the meantime reduce some fears. You are on the right track with educating yourself and beginning to implement lifestyle changes. Dr. Bredesen's book will provide you with a wealth of information and arm you with additional knowledge when you're ready to see a doctor and start to dig into your whole health. As NF52 so wisely commented, you are on a completely different path, this is your own personal journey, and those positive changes you're referring to will take you a long way.

The Wiki is a great place to begin on this site (along with the Primer as already mentioned). This is an introduction to ApoE4, biochemistry and possible prevention strategies.

Warmest regards,
Melanie
Functional Medicine Certified Health Coach
Reversing Cognitive Decline for Coaches (ReCODE)

Trevor
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Re: Just discovered I'm 4/4, rocked.

Postby Trevor » Sat Feb 01, 2020 12:48 am

Hi, thanks so much for your responses. At the bottom I have some questions for anyone reading this, but up top I've got replies for each of you so I don't make three posts.

mountaineermd: Thanks for the extra book recommendations. I'll also definitely have to try to get to the Youtube videos. I used to do time-restricted eating when I was younger and was told it was a bad thing, it's wild how that's gone the other way in recent years. That should be the easiest part of this for me.

NF52: Thanks so much for the lovely post. I almost feel bad being scared at 35, laying in bed, when you were in your 50s getting a degree. That's amazing. I wish bagels were still my friend, when I say goodbye to them in the coming months/years, I will shed a tear.

Melanie: Hey, I've been on the west coast my whole life too! Thanks for the links.

So my questions are:

1. Where should I ask questions? haha. But really, I don't want to clog things up or bore people.

2. What's a good way to contribute to the community? I'd like to add to things but being so new, I feel like I have little to offer that none of you already don't know.

3. How should I go about getting tests? I read the first two chapters of The End of Alzheimer's today, but leafing through the rest of the book I found a list of things to be tested. My problem is I haven't seen my doctor in years and he's kind of a grump, so I'm worried about the implications of me coming in, at 35, with a list of things to be tested. Is that even a reasonable request at my age? I know the book suggests starting to get things checked in your 40s, would I be jumping the gun doing that now, even as a 4/4?

4. This plays off the last question, but at my age of 35, should I be experiencing any signs of problems already? Like I said in my first post, I have already been kind of paranoid about feeling me losing a slight step in the last couple years. I know Alzheimer's usually manifests fully in it's 60s-70s, but is it a case where I should be expecting slight delines now?

5. My APOE4 test was done by 23andMe, but after I got the result, I ran their raw data through a service site called Promethease and saw this message:

"Possible false positive: This variant is rare in the general population and it may be a miscall. If it is indeed a miscall, this variant's frequency based on genotyping would be too high compared to what is expected in scientific literature, causing a false positive. If you are concerned about this variant or have a family history of a condition associated with this variant, we strongly recommend taking a clinically validated DNA test to verify it and/or consulting with a genetic counselor. "

Should I get a retest or is this just wishful thinking? Also, is there anything else I should get tested that hasn't been covered? Something for early AD?

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Re: Just discovered I'm 4/4, rocked.

Postby BradleyD » Sat Feb 01, 2020 5:33 am

I’m just like you in that I’m a 37 year old man, 4/4, great grandmother died of Alzheimers at 84, and grandmother getting it now at age 80. I was crushed mentally when I found out and was depressed for a couple of months. It does get way better after the initial grieving stage. I promise. What fixed me is really knowing my actual odds by age, and focusing on the tremendous amounts of research that are happening and accelerating. With the gene editing that science is doing today, it seems almost certain that in 15-20 years E4 will be a non issue for us. Studies are already being done in humans where E4 is being switched out for the protective E2. Getting brain E4 removed 15 years from now could be like getting a flu shot. It gets better emotionally, trust me, and since we know our status, we can be the first ones in line when this this thing is finally cured. Until then, it gives you the gift of appreciating each day of your life a little bit more.

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Re: Just discovered I'm 4/4, rocked.

Postby Trevor » Sun Feb 02, 2020 1:26 am

BradleyD wrote:I’m just like you in that I’m a 37 year old man, 4/4, great grandmother died of Alzheimers at 84, and grandmother getting it now at age 80. I was crushed mentally when I found out and was depressed for a couple of months. It does get way better after the initial grieving stage. I promise. What fixed me is really knowing my actual odds by age, and focusing on the tremendous amounts of research that are happening and accelerating. With the gene editing that science is doing today, it seems almost certain that in 15-20 years E4 will be a non issue for us. Studies are already being done in humans where E4 is being switched out for the protective E2. Getting brain E4 removed 15 years from now could be like getting a flu shot. It gets better emotionally, trust me, and since we know our status, we can be the first ones in line when this this thing is finally cured. Until then, it gives you the gift of appreciating each day of your life a little bit more.


Thanks for the reply. I've read up on that CRISPR gene editing and it's definitely exciting, although I don't want to get my hopes too high. It seems like there's a lot of work to do there, especially in making sure it doesn't alter things we don't want altered. Hopefully it has a smooth ride to solving those issues.

Do you do anything in terms of diet/otherwise now as a preventative thing, or are you waiting until you see early warning signs?

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Re: Just discovered I'm 4/4, rocked.

Postby slacker » Sun Feb 02, 2020 6:39 am

Trevor wrote:
1. Where should I ask questions? haha. But really, I don't want to clog things up or bore people.

Chose whichever forum seems most reasonable for your new post. You might be able to find a conversation on your question by doing a search first; magnifying glass upper right tool bar. I use the word "conversation" rather than "answer" since most questions don't have hard and fast responses. When I use the search function, I usually have to do a lot of digging, but invariably find other interesting information along the way. You can also do a more limited search just in Stavia's primer or in the wiki space.

What's a good way to contribute to the community? I'd like to add to things but being so new, I feel like I have little to offer that none of you already don't know.

You contribute by asking questions! (after attempting to search first :D )

How should I go about getting tests? I read the first two chapters of The End of Alzheimer's today, but leafing through the rest of the book I found a list of things to be tested. My problem is I haven't seen my doctor in years and he's kind of a grump, so I'm worried about the implications of me coming in, at 35, with a list of things to be tested. Is that even a reasonable request at my age? I know the book suggests starting to get things checked in your 40s, would I be jumping the gun doing that now, even as a 4/4?


I don't live in Canada, but my perception is that your health system doesn't have as many options as the US system. In the US, it's possible to order many of your own tests and pay out of pocket at direct to consumer labs. If you are close to the US border, you might be able to travel to a US direct to consumer lab. It also seems that you have less options in changing doctors if you aren't content with the one you have. At your age, you may want to focus on the insulin resistance labs that Stavia recommends in her primer; it is much shorter than Dr Bredesen's list. And perhaps Dr Grumpy would be open to ordering this short list for you.

At my age of 35, should I be experiencing any signs of problems already? Like I said in my first post, I have already been kind of paranoid about feeling me losing a slight step in the last couple years. I know Alzheimer's usually manifests fully in it's 60s-70s, but is it a case where I should be expecting slight declines now?

It appears that brain changes start to occur around 20 years before diagnosis of Alzheimer's. You are still young, and may benefit most from focusing on improved nutrition, sleep, exercise, stress management, and strengthening social connections.

My APOE4 test was done by 23andMe, but after I got the result, I ran their raw data through a service site called Promethease and saw this message:

"Possible false positive"...Should I get a retest or is this just wishful thinking? Also, is there anything else I should get tested that hasn't been covered? Something for early AD?


Some members have repeated ApoE testing through other lab companies. My sense is that most repeat testing results in confirmation of E4, with occasional different results. What would you do differently with the information? I personally don't recommend looking for proof of early AD genetics. Presence is usually obvious through strong family history of AD occurring at a young age, before age 65 and often starting in one's 40's and 50's.
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Re: Just discovered I'm 4/4, rocked.

Postby daydreams1991 » Sun Feb 02, 2020 6:57 am

Hey Trevor.

I just wanted to chime in as a 28 year old 3/4 who also had her world rocked two years ago when I found out as well.

What a lot of people won’t tell you when you find out about this news is that it’s OK to feel awful about it. It really is. Take some time to acknowledge how it scares you. I know this sounds like strange advice but the only way I got through my trauma was staring it right in the face and seeing it for what it was. Then, I was able to cope with it better and realize that what I was fearing was something I could have control over. Maybe I will get AD when I’m older, but it will be far later than I would have gotten it had I not known I had the gene.

Secondly, as others have said and will say, you will feel better. I don’t follow everything posted here. I take a lot of supplements, especially B12. I exercise near daily and cut artificial sugars from my diet (I was already on a gluten free diet before I found out). I’ve lost about 15ish pounds and hover between a 20 to 21 BMI. I feel amazing and my attitude has never been better. Turns out that taking care of my future self is making my present self all the more better and that’s really what I should have been doing in the first place! I’m really not doing much now compared to a lot of these users but I feel like I’ve done so much already.

Finally, we have TIME. You and I likely have about 40 to 50 years before we would ever have to worry about this disease affecting us. You know what also is going to have happen in that time? Advancements in research. AD is one of the most crippling illnesses to the world economy. Countries like Japan are working their butts off to try and come up with solutions to solve the problem of their aging populations. We already have solutions like gene editing that will surely become more viable and available in the future.

It’s OK to feel sucky now but know that it’s going to get better. You are not your grandmother and great-grandmother. I am also not my great-grandmother who died at 72 not knowing her own name. We will live better lives. I promise.

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Re: Just discovered I'm 4/4, rocked.

Postby Fiver » Sun Feb 02, 2020 12:29 pm

A similar experience here, though I am a bit older at 48. You've found the right place. Welcome to the group!
Four relatives with AD. Concerned, but hopeful. Introverted, but will talk about science.


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