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

Postby Rainy » Thu Jan 25, 2018 2:59 pm

Just received my 23andme results - Jackpot!!! Two shiny APOE E4s in all their glory have been assigned to me! At least I was truly expecting this dark news. I have had long-term care insurance for a few years already. Both my parents used their own long-term insurance policies, Dad for a couple years and Mom for 6 years - she used every last penny of her policy, quite rare!

In my direct line both my parents died of Alzheimer's, in addition to my maternal grandmother and paternal grandfather. My father also had Parkinson's, but I apparently do not have that risk assigned to me, and I do appreciate that consolation.
After my dear husband and I take a couple weeks to settle into this new 4/4 (love the lingo) reality, we plan to discuss with our grown, married children so they can be prepared. Hopefully a cure will be here in time for them, if not for me. Our son has a daughter of his own now, and our daughter is expecting her first child in a couple weeks. Both of our kids were very close to and involved with their grandparents' care, so this will not be a completely new experience for them, should I not dodge this fat bullet. I will also gently broach the subject with each of my two sisters; all of us are now in our early 60s.

I don't plan on widely sharing my status with extended family at this point. I don't want to feel like I am being monitored for signs of dementia, and I don't want people to worry about me. I am concerned because my baseline lifestyle is already health and fitness focused, as was my Mom's. She was a very early (1960s) adopter of exercise, lots of vegetables, no desserts, broad interests, multiple careers and university degrees, diverse friendships, glass of wine with dinner. She was an avid birder, gardener, backpacker, traveler, seamstress, hospital volunteer. Everything you are supposed to do to avoid AD. And all that did NOT save her, although she did enjoy several happy, active years into her early 80s after her diagnosis.

Even before my 23andme testing I had signed up for organizations such as GeneMatch. I am fit and trim and active with family and community. My husband and I are mostly Paleo, so not much sugar. So how do I up my game here? I would really appreciate any ideas! I truly appreciate being part of this kind and generous community, thank you so much!
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 Searcher » Thu Jan 25, 2018 3:45 pm

Rainy, welcome! Congrats on your daughter's approaching confinement. Hope everything goes well there.

Your game seems to be near the very summit, what with your accepting approach which does a lot to keep your cortisol levels controlled. That gives you an excellent foundation.

I suspect when you read through the wonderful primer written by Stavia, you'll find some ways to tweak your excellent game.

Whatever you do, keep your wonderful spirit. I'm just a pleb here, I'm sure the great and the good will soon give you an even warmer and more informative welcome.

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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 » Thu Jan 25, 2018 3:59 pm

Welcome, Rainy, so glad you found us! Though you're scared by the news, you're already forming your action plan to fight it, and I sense you will fight it on multiple fronts. I'll point you first toward our site Primer It was written by physician member Stavia and is filled with explanatory and helpful information. I would venture to say it contains answers to questions you don't yet know you have. :-)

I don't think you mentioned knowing about Dr. Dale Bredesen, and his recent book: The End of Alzheimer's: The First Program to Prevent and Reverse Cognitive Decline. Dr. Bredesen's ReCODE Protocol focuses on '36 holes in the roof' as it were, with suggestions to 'plug' those holes. Many on the site find the ReCODE program helpful (though not all work directly with Dr. Bredesen himself, of course).

Others on the site are followers of Dr. Steven Gundry, whose latest work is Plant Paradox. We have some members who see Dr. Gundry personally, and are kind enough to post information about their visits.

It seems you're ahead of the game, having focused on exercise and diet for a long time already. How are you at relaxing? Have you had lab testing recently (Vitamin D level; HbA1c level; hormone levels; thyroid testing; B12; homocysteine)?

We are always improving our site, and are developing Wikis. You can access those by clicking on the three stacked squares to the right of your name. At that same location, you'll find our site Search function. The total files on the site are voluminous, and there probably has been a thread on pretty much any topic you come up with.

A major plus for health is a supportive and understanding community - and that you have walked into here. Welcome again!
Last edited by Jan on Thu Jan 25, 2018 4:07 pm, edited 1 time in total.
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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 » Thu Jan 25, 2018 4:04 pm

Good catch on the cortisol mention, Searcher! That's what I was thinking when I asked Rainy about 'relaxing,' but I wasn't very specific in my choice of words. Thanks for adding something I didn't even realize I forgot. :-)
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Re: Hello! I'm a brand new 4/4 member, scared but relieved and grateful to find you all!

Postby TheresaB » Thu Jan 25, 2018 5:29 pm

Welcome! No words of wisdom, just another 4/4 here to say welcome to the club. :) The description of your mom could almost apply to me, I just need to take up sewing and become a hospital volunteer. But now through this website we'll both beat the odds, right? You betcha!
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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 Jan 25, 2018 10:54 pm

Welcome, Rainy. I too hit the 4/4 jackpot and discovered my status just over a year ago at a similar stage of life. It's one thing to know, based on family history, that you have increased risk; it is quite another to suddenly find yourself staring at those two shiny ApoE4's. My head was spinning as I tried to be industrious in the process of educating myself (I had never even heard of ApoE!), as well as pragmatic in my decision making.

Coming to this group was a very important first step. One member advised me to give it time and let it sink in; I really didn't know what that meant at the time, as I felt it had sunk quite deep. But it really did take time to sink in. I will also be forever grateful for another member's support and words of wisdom. She insisted that the anguish I was feeling then would get better. I held that promise tight until one day I realized she was right; it was no longer constantly on my mind, and I was mostly just living my life. I can now read about AD, hear about it on the news, or discuss it without getting upset.

Like you, my mind quickly went to my (mostly) adult children. I told them that I have genetic risk but did not explain the details. I figured that if they to know more, they will ask. They really don't seem to want to discuss it at all. I am still pondering the issue of disclosure; all I know is once you disclose, you can't un-disclose. I did tell my husband fairly soon -- first just that there was risk, but I was so visibly shaken over the next week or so, that I decided to tell him the details. I don't think it occurred to me at the time how difficult this news might be for spouses.

Also, like you, I was already eating healthy and attempting to make healthy lifestyle choices and wondered how I could step up my game. At first I got super intense about it and even took up jogging (I am not a runner!), but hyperfocusing on AD was making me a crazy person. So I backed off and am now SLOWLY stepping up my game.

I hope at least something here was helpful. Hang in there!
~Anna
4/4 but so much more

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

Postby Searcher » Fri Jan 26, 2018 3:57 am

Anna wrote: hyperfocusing on AD was making me a crazy person. So I backed off and am now SLOWLY stepping up my game.


Anna, that is profound wisdom.

As you probably know, your wise approach helps control your cortisol levels. Get that one thing right, and a huge list of health benefits come to you automatically.

I love how you keep the APOE4 gene in perspective. There's a whole world out there, and a whole new day to celebrate life. Thanks for the reminder.

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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 » Fri Jan 26, 2018 11:27 am

Searcher wrote:I love how you keep the APOE4 gene in perspective. There's a whole world out there, and a whole new day to celebrate life. Thanks for the reminder.


Searcher, that's exactly it. Maintaining perspective is difficult but necessary. In some ways knowing my 4/4 status makes it more difficult to have perspective, but in other ways it makes it easier.

Rainy, when I first got my results, I was desperate for facts that would stop me from feeling doomed. Some concrete things that helped along the way were Dale Bredesen's research, Dr. Perlmutter's insistence that Alzheimers is largely a preventable disease, an older 4/4 member on this site who reports doing just fine, and looking around and seeing that there are so many people with even greater challenges, health and otherwise.

It has also helped to reframe the risk as being on a continuum, rather than a percent chance of being diagnosed with AD at a particular age. Everyone has some degree of AD/dementia risk (ApoeE4 is not the only thing that elevates risk; diabetes, for example is a huge factor.). ApoE4 status alone is not a measure of overall AD/dementia risk and is even less predictive of longevity. With so many variables, I figure all we can do is focus on the variables we can control.
~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 » Tue Jan 30, 2018 4:10 pm

Omigosh, terrific to take a deep, deep breath and truly appreciate such wisdom so generously shared here in this community! I am working to calmly, not frantically, eliminate aluminum and reduce cortisol. Each day is a gift to savor!
Rainy
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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 » Tue Jan 30, 2018 5:03 pm

Good things to focus on, rainy. Here's a link to the Bredesen Protocol in one of our Wikis. It might give you additional avenues to check. https://www.apoe4.info/wiki/Bredesen_Protocol
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