New 4/4 member introducton

[bikerman]

Hi everyone,

My name is Kevin. I received my results via 23andMe a few weeks ago, and was completely shocked to learn I was 4/4, especially since I did not remember even asking for the DNA results other than ancestry. Since then I have been thinking about it 24/7, first feeling helpless and then feeling that I need to do something. This website and group has been tremendously helpful with the information, and I am now feeling like I may have a path forward - and that it may actually be a positive to have received the results.

I am 56 years old, relatively fit at 6 ft tall, 160 lbs, waist 32". It does seem as though I am having some memory issue with recalling of specific words at times in the past year. It wasn't a concern of mine since I have always had a not so good memory, but now I am a little concerned. I have loosely followed the Mediterranean diet for the past several years and exercise regularly - but a hip injury has limited activity for a while and will likely need surgery. I have always had sleep problems and have taken sleeping pills and ativan occasionally - but understand that I will need to discontinue that. Any advice on sleep would be helpful. I have two teenage daughters in high school. My wife died of Appendix cancer about 3 years ago, so I am feeling somewhat alone with this news bombshell, and also feeling like I went through a similar experience with her health issues given it was such a rare cancer with no cure. Should I share the 4/4 news with family? On one hand I would like someone to talk with, but on the other hand I don't want them to suspect that I am slipping. I will not tell my daughters until many years down the road, as it would freak them out too much now.

I have read the primer, and also the summary of Bresden's book. My main questions are about how I should modify my diet. I understand that I need to stop all sugar and processed foods, but what about dairy and complex carbs such as brown rice and oatmeal? What about beer and wine? I didn't see alcohol mentioned in the primer. Moderate consumption is advocated in the 2015 Alzhimers Association's "Summary of modifiable risk factors fro cognitive decline and dementia", as is the Mediterranean diet. Or should I go all in with the keto type of diet and ReCODE protocol recommended by Bresden? Should I see a integrative doctor, or even see a doc at the Buck Institute since it is only an hour away from where I live?

The diet plan in the primer makes intuitive sense, and is backed with scientific data. In addition to that, are there any studies done of people or societies that have followed the diet/exercise/sleep/connection protocol outlined here, or keto diet; and prevention of AD, especially in 4/4 types? The only thing I know of is a great book by John Robbins called "Healthy at 100" in which he studies the habits of 5 societies that live to be past 100 and stay healthy physically and mentally. But this is not a specific study on AD.

I am so happy to have found this group and look forward to being a part of it. My sincerest appreciation in advance for any advice on above items.

Kevin

[CarrieS]

Hello Kevin and Welcome to the Community.
I'm sorry about how you found out about your APO status. You've had a tough go with your wife's unique cancer so I can only imagine the emotions when you read your 23andMe report. This website is such a great source of hope for us and I'm glad that you are finding the information here helpful and hopeful too. You'll find people follow a variety of dietary guidelines based on what works for their individual bodies and genetics. The interesting part is figuring out the tweaks that work for you. Yes, stopping sugar and foods that primarily turn into sugar and processed foods is a great start. Dairy is based on your personal tolerance and complex carbs based on your physical activity and tolerance.
If you are having cognitive issues, it may be worth your time to talk to a doc at the Buck Institute (cool that you are so close) or at least get the initial tests that are mentioned in Dr. Bredesen's book done to know where you are at and what you may need to optimize. Julie G has a post "Can I practice the Bredesen protocol without a trained practitioner?" that you may find helpful as you are trying to figure out your next step. You can find it here: viewtopic.php?f=33&t=4459&p=52043&hilit ... sts#p52043. Another way to hone in on your unique needs is to check out Ben Lynch's book about genetics called Dirty Genes. You can run your genetic results through his Strategene engine to see your unique pathways to help take some of the guess work out as you try to optimize your wellness.
I'm glad that you have found Stavia's Primer to be intuitive. There is a series online right now called The Human Longevity Project that looks at people living in the "blue zones". I found it to be very interesting and engaging on all aspects of health. Here is the link to Day 2 https://humanlongevityfilm.com/episode-tgai2/ Day 8 is about Cancer and Alzheimer's.
You've absorbed a lot in a short amount of time. Give yourself time, grace and a big hug.
We're all here to support each other.

[NF52]

Hi everyone,
... I did not remember even asking for the DNA results other than ancestry. Since then I have been thinking about it 24/7, first feeling helpless and then feeling that I need to do something...and I am now feeling like I may have a path forward - and that it may actually be a positive to have received the results.

A warm welcome, Kevin, from another 4/4, who could be your 66 year old cousin--genetically speaking. If you can't talk about this with family, which is a choice I also have made for now, this is a safe place to share. I don't know you, so have little right to offer my feeling of sorrow on the death of your wife. But I do have both friends and family who have raised children after their spouses died too young, and know the love that goes into that commitment to keeping your daughters safe from worry.

Carrie is right that you could certainly have some tests at the Buck Institute to give you a better sense of where you are. My own, non-medical suspicion, as someone who went through a similar stress-reaction to this news is this: That's what happens when people learn they have ApoE 4: they not only feel their memory slipping; their memory actually does (temporarily) slip. Below is a link to a recent and fascinating study. Their results: People who have just learned they are ApoE 4 positive do worse on a memory test than people who are ApoE 4 positive but who do NOT know their results. And people who have been told that they are ApoE 4 negative (ex. ApoE 3/3) do the same on memory tests as ApoE 4- negative people who have not been told that happy news. But knowing they don't have the ApoE 4 allele, they THINK they did better on the test than they did! So don't sweat your memory: it's much more likely to be the product of stress, sleep deprivation and judging yourself too harshly.
Effect of Knowledge of APOE Genotype on Subjective and Objective Memory Performance in Healthy Older Adults https://ajp.psychiatryonline.org/doi/pd ... 3.12121590

The science is far from settled about what are assumed to be multiple factors that can protect against the risk of Apoe 4/4 and provide resilience through compensatory mechanisms. Clearly such risk reduction and resilience occurs: a recent meta-analysis found wide ranges of risk within 4 cohorts of people studied for years. The estimates they derived from the meta-analysis are that those with ApoE 4/4 who are currently between 60-75 years old face a "lifetime" risk of mild cognitive impairment or dementia by the age of 85 between 30% and 55%. Or more positively, people my age, and slightly older than you, have a 45-70% chance of NOT being diagnosed with either MCI or dementia in their lifetimes.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
http://journals.plos.org/plosmedicine/a ... ed.1002254

Here's another article that explains the concepts of "cognitive reserve" and "brain reserve", which appear to be well associated with significant risk reduction. Cognitive reserve in ageing and Alzheimer's disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3507991/

Be well Kevin. We are all better for those who join this community and share their stories. Yours is an inspiration.

[SandyK]

Welcome Kevin. I feel for your situation. Being a sole parent makes it all the more complicated. One thing to keep in mind is that your genes are not your destiny. You can have an effect on keeping on the right side of health. Read all of Dr. Bredesen's book. Sleep is a really important piece. Finding a doctor who you can work with is worth considering.
Dr. Bredesen and Dr. Verdin (CEO of the Buck) are speaking tomorrow night at Dominican College through TEDx Marin.
Knowledge is power and knowing your 4/4 status gives you the opportunity to learn more about what you can do before it is to late.

[slacker]

Any advice on sleep would be helpful.

Hi Kevin; there is some information about sleep in the primer. There have been some excellent threads on how to improve sleep in the past, but that being said, it can be tedious to find them with the search function (magnifying glass in toolbar).

Should I share the 4/4 news with family?

If you haven't read "Thinking about testing?", there is a small section on effects on family. Since you are homogeneous for ApoE4, your children have at least one of these alleles.

Should I see a integrative doctor, or even see a doc at the Buck Institute since it is only an hour away from where I live?

My understanding is that Buck is a research facility which doesn't provide direct patient care. I might be wrong. It happens!

[Fiver]

Hi Kevin. My experience has taught me that the best first step is to either find a good, 4/4-aware doctor OR one who is willing to learn and order tests you suggest, and have some basic labs run. Otherwise you won't know what specific issues you want to work on, and whether or not they improve. Dr. Bredesen recommends some basic tests in his book. Many of them would be relevant to anyone at any risk of heart disease, diabetes, depression, etc. - in other words, pretty much anyone. So most test are easy and natural for doctors to order, even if you have to fully interpret them yourself.

The tests can give you peace of mind - some results will be fine. And if you identify areas of need you can track your progress, which also feels good.

If you have a good doctor to talk with (or someone else) it can provide an outlet and makes it easier to decide if/when to tell family members. Read those posts about disclosing - they are helpful - and keep the info off your medical charts.

Family members might notice that you are stressed about something. But at the same time, as you said, they might not need to worry about this, now or ever. Especially our kids. Also, they aren't necessarily the best to provide support if they are also processing it and what it means for them at the same time.

[woleile]

Hi everyone,

My name is Kevin. I received my results via 23andMe a few weeks ago, and was completely shocked to learn I was 4/4 [snip]

The diet plan in the primer makes intuitive sense, and is backed with scientific data. In addition to that, are there any studies done of people or societies that have followed the diet/exercise/sleep/connection protocol outlined here, or keto diet; and prevention of AD, especially in 4/4 types? The only thing I know of is a great book by John Robbins called "Healthy at 100" in which he studies the habits of 5 societies that live to be past 100 and stay healthy physically and mentally. But this is not a specific study on AD.

[snip]

Kevin

Hi Kevin,

I'm new here too, and also found out my status accidentally on 23andme.

This study doesn't answer the exact question you asked, but it does concern AD risk in 4/4s who aren't Americans:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2855121/

They found that homozygous APOE4 status in Nigerians did *not* increase their risk of dementia. They were compared with (African-) Americans of the same age, for whom of course it does increase risk. There's no discussion of why the Nigerians are healthier, other than some speculation about the American "high-fat" diet. Well, they got the

[woleile]

Hi everyone,

My name is Kevin. I received my results via 23andMe a few weeks ago, and was completely shocked to learn I was 4/4 [snip]

The diet plan in the primer makes intuitive sense, and is backed with scientific data. In addition to that, are there any studies done of people or societies that have followed the diet/exercise/sleep/connection protocol outlined here, or keto diet; and prevention of AD, especially in 4/4 types? The only thing I know of is a great book by John Robbins called "Healthy at 100" in which he studies the habits of 5 societies that live to be past 100 and stay healthy physically and mentally. But this is not a specific study on AD.

[snip]

Kevin

Hi Kevin,

I'm new here too, and also found out my status accidentally on 23andme.

This study doesn't answer the exact question you asked, but it does concern AD risk in 4/4s who aren't Americans:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2855121/

They found that homozygous APOE4 status in Nigerians did *not* increase their risk of dementia. They were compared with (African-) Americans of the same age, for whom of course it does increase risk. There's no discussion of why the Nigerians are healthier, other than some speculation about the American "high-fat" diet. Well, they got the American part right, anyway!

[bikerman]

Thanks for the info and link. I think that the leading theory is that the Nigerians eat less processed food and red meat, or more of a Palio type of a diet, than Americans. This is also true of the China Study, in which the more affluent parts of China had a higher incidence of cancer and cardiovasuclar disease - assumed to be driven by hither intake of processed foods and red meat that come with wealth.

[Rmrebner]

Hi Kevin.

Bottom line, I recommend you sign up with a doc educated with and using the Bredesen protocol.
They are expensive but peanuts compared to what developing Alzheimer’s will cost you in quality of
life terms as well as financially ( maybe 3 weeks in a good nursing home?). I just signed my wife with
a local doc with super credentials. We are hopeful.

Before you sign up for the Recode, email them and ask for docs trained in the protocol in your
area. They will also give you info on each doc (but not their name) as well as costs and certain
capabilities. Once you have signed up for the $75 a month for 1 year, you will get the names of
those trained in the protocol as well as other info/benefits. You can then look at their websites,
call selected docs and see if the are taking new patients, confirm billing info, etc.

Good luck. I really believe this is the way to go. You probably can do 80 percent of his Protocol on
your own but that other 20 percent that may be the key.

God bless,

Ron