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Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Rainy
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby Rainy » Wed Feb 21, 2018 10:39 pm

Thanks, everyone! I do need to get better at relaxing! I am working on seeing the risk as a continuum, with more factors than just E4 status and a 60% chance of AD at age 85. I have taken a bit of a break from figuring out how to manage, how to have the best chance at staving off AD. So now I am re-reading all these terrific suggestions to take steps such as having levels tested, getting familiar with the Bredesen Protocol, lowering cortisol level, searching out studies to join...
My doctor is supportive, so I could probably get the testing Jan suggested: Vitamin D level; HbA1c level; hormone levels; thyroid testing (normal range in recent blood work); B12; homocysteine. Are all of these usual requests that my doctor would recognize and order for me? I have heard that hormone levels can fluctuate and are not too reliable? I have always had high cholesterol with high HDL that my doctor has not worried about, but what is the thinking on cholesterol and E4? What about testing for heavy metals such as lead?
Thanks again for all your collective wisdom and compassion, it helps a LOT!
Rainy
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"Live your life, live your life, live your life!" Maurice Sendak

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SusanJ
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby SusanJ » Thu Feb 22, 2018 6:53 am

Rainy wrote:I have heard that hormone levels can fluctuate and are not too reliable?

Edit: Sorry, read homocysteine, not hormones.

Hathaway (you can search the site for some of her info) recommends testing at the same time of the month.

And if you are on HRT:
if you cycle progesterone, then at the end of your progesterone for the month (at it's peak)
if you are on a patch, at the mid-point of your estrogen patch.

Anna
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby Anna » Thu Feb 22, 2018 9:53 pm

Rainy wrote:I have taken a bit of a break from figuring out how to manage, how to have the best chance at staving off AD. So now I am re-reading all these terrific suggestions to take steps such as having levels tested, getting familiar with the Bredesen Protocol, lowering cortisol level, searching out studies to join...

I also had to take a break (actually several breaks!) from dealing with this new info, and I found that my reading/research became much more productive after I let the dust settle. I can now read about ApoE or listen to talks about Alzheimer's without stirring up too much emotion -- unless something else in my life is bothering me; then I know to take a break.

It seems like you are off to a great start. I found that too many test results at once can also be overwhelming, and I truly believe each of us needs to be in charge of the pace we tackle all the assorted components of this new mission. One thing I did from the start was to decide to not make any major decisions (like joining a study or disclosing beyond a very small circle) until I was a least a year into learning my 4/4 status.
~Anna
4/4 but so much more

Rainy
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby Rainy » Sat Feb 24, 2018 10:05 am

Great advice, thank you so much, everyone! I am looking to fine-tune my approach to a happy and healthy life as a 4/4 in a calm, science-based manner.
Does anyone have any insight into cannabis (legal in Washington) for sleep and relaxation, as it specifically affects E4?
What about alcohol, which I have read is harmful, not beneficial, to E4 folks?
Are these questions better asked in new strings?
Rainy
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"Live your life, live your life, live your life!" Maurice Sendak

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Jan
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby Jan » Sat Feb 24, 2018 10:15 am

Rainy wrote:Great advice, thank you so much, everyone! I am looking to fine-tune my approach to a happy and healthy life as a 4/4 in a calm, science-based manner.
Does anyone have any insight into cannabis (legal in Washington) for sleep and relaxation, as it specifically affects E4?
What about alcohol, which I have read is harmful, not beneficial, to E4 folks?
Are these questions better asked in new strings?

Hi, Rainy. There have been recent threads on both subjects. Have you tried our site search engine? Click on the three stacked squares at the top right (next to your name), and put each term in. Lots of discussion and opinion on each topic. Glad you are settling into the site!
mrc cfnc fmchc
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What is, is. What is, can be changed.

Rainy
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby Rainy » Sat Feb 24, 2018 10:28 am

Thanks much for the search function instruction to use the 3 stacked squares next to my name, somehow missed that guidance earlier! Found the info on E4 and alcohol, darn it, I do love my dark beer...
Rainy
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"Live your life, live your life, live your life!" Maurice Sendak

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ZenGinner
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby ZenGinner » Mon Feb 26, 2018 6:58 pm

Welcome!

I love your (already) tempered approach.
I was pretty panicked for a few weeks. All I could focus on was the doom and gloom.
I am single and childless. There will be no caretakers, even if I take that route.

But, as the sage advice from these kind folks promised, that panic subsides.
Now, I just look at it as another annoying risk. (So far, all of my members have died of something else, first.)
I read this forum as I can. I try to get overwhelmed by all of the information I don't fully understand.
And, I try not to let the constantly conflicting studies depress me.

Eat well, exercise, and look at the primer for the markers to watch.
Most importantly, live your life. Be happy.

K
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Vegan

Rainy
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby Rainy » Sat Mar 03, 2018 11:08 pm

Thank you for your kind and calm guidance, K! Panic is subsiding a bit. I have come to the conclusion that most of all I feel empowered knowing my 4/4 status.
Rainy
E4/E4
"Live your life, live your life, live your life!" Maurice Sendak

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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby Shayo33 » Thu Mar 29, 2018 9:47 pm

Hi,

I just found out today through a blood test that I have both of the apoe4 genes. I am not even sure if I am pronouncing that right. I did not even know I was having any genetic testing done. I am still In Shock and I am not exactly sure what this means. I am so overwhelmed...not really sure what to do. I found you through the book end Alzheimer’s

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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby NF52 » Thu Mar 29, 2018 10:38 pm

Shayo33 wrote:I just found out today through a blood test that I have both of the apoe4 genes. I am not even sure if I am pronouncing that right. I did not even know I was having any genetic testing done. I am still In Shock and I am not exactly sure what this means. I am so overwhelmed...not really sure what to do. I found you through the book end Alzheimer’s

Welcome, Shayo33!

If you're posting this from the Eastern U.S., I'm guessing you can't sleep because of this news. Wherever you are, you're no longer alone--and we're glad you found us through Dr. Bredesen's book, which has so many helpful and reassuring suggestions.

You are not alone in finding out your ApoE 4/4 status from a blood test that you didn't ask for. No one should find out that way! Yet doctors sometimes order "routine" blood tests and check off genetic tests or "APOE" without discussing with their patient why they are doing that, whether the patient understands the possible implication for both the patient and possibly the patient's family, and knows that s/he can refuse that test. You certainly have the right to ask to speak with your health care provider about HOW you came to get this information.

I bet you are pronouncing Apoe just fine, although the "right" way is long-vowel "A" followed by POE (as in the writer Edgar Allen Poe), followed by Long-E. The answer to the question of "what this means" is different for each of us, depending on our age, our family history, our health, our interest in diving into topics in which the settled science isn't very settled.

For almost everyone here, with the exception of people who sought out testing because they were pretty sure from family history that they must have at least one ApoE 4 allele (or gene), being "overwhelmed" is something we struggled with, along with emotions like anger, fear, anxiety, guilt (if we have kids who know have one of those genes). But we can tell you that it does get better--because the more you know, the more you realize that GENES ARE NOT DESTINY.

You may find articles in popular magazines, even in "science" websites, that say that having two ApoE 4 genes increases your chances of getting Alzheimer's (AD) or other dementias by about 9-12x. Don't believe everything you read!
it does raise the risk of EITHER mild-cognitive impairment (which in most people does not require intensive support) or late-onset Alzheimer's disease after age 65 (abbreviated LOAD) to somewhere between 30% and 60% by age 85--according to a 2017 analysis of 4 large studies. That's a big spread--largely because most likely a whole bunch of factors, from air pollution to what we eat, whether we smoke, whether we have untreated high blood pressure or uncontrolled diabetes, or never exercise or have little access to health care, all those things and many more probably affect whether any one person will keep a healthy brain for most, or all of our life.

For now, here's a very unscientific, but personal reassurance. I don't know your age, but I am almost 66, and also a 4/4 and I am still able to be a Moderator on this site, read medical journals, play dinosaurs with my 2 year old grandson, plan two week overseas trips to wonderful places like Wales, Ireland and Scotland with my husband. I can't draw and I can't play the piano, but since I never could do those things, I'm not going to blame my genes or my brain. I put a priority on sleep, on eating fresh food as much as possible, on not beating myself up when I am not perfect, and on finding much to celebrate in life. There are many others on this site my age or older who are similarly re-writing the "destiny" about what it means to have Apoe 4/4 on a report.

Take some time to read Dr. Bredesen's book. Read our own Dr. Stavia's Primer (You can find it under the Getting Started category in the second forum topic, or on the Welcome page.) One of our wonderful interns, all of whom are budding health coaches, will offer you a welcome post, probably tomorrow morning! Feel free to tell us more about yourself, and to let us know how we can support you in the next few weeks and months.

Hugs from a fellow 4/4.
4/4 and still an optimist!


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