Where my APOE 4/4s at?!

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radkam01
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Where my APOE 4/4s at?!

Post by radkam01 »

Hello!

I'm a 35 y.o. female - found out I was APOE 4/4 probably about 5 years ago. My grandmother died of Alzheimer's at 72 and started showing symptoms around 65.

I'd like to just hear from other 4/4s. I know people feel anxiety about being APOE 3/4, but I would feel more comfort hearing from the lucky 2-3% of the population who are 4/4 with me (special shout to to Chris Hemsworth! LOL). Who are you? How old are you? Have you made lifestyle changes already? How do you handle the anxiety/stress of being 4/4? Anything you'd like the share - I feel like just being in touch with others in this same situation would help me.

I'd love to hear from those who are 65+ with no symptoms. I'd like to know if we think gene therapy will be an option for the average person in the next 10, 20 years?

I often see that the likelihood of getting Alzheimer's is 50-60% by the age of 65 for APOE 4/4s. Is that correct?

Thanks :)
Amanda
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Re: Where my APOE 4/4s at?!

Post by TPE »

radkam01 wrote: Thu Jan 04, 2024 11:22 am Hello!

I'm a 35 y.o. female - found out I was APOE 4/4 probably about 5 years ago. My grandmother died of Alzheimer's at 72 and started showing symptoms around 65.

I'd like to just hear from other 4/4s. I know people feel anxiety about being APOE 3/4, but I would feel more comfort hearing from the lucky 2-3% of the population who are 4/4 with me (special shout to to Chris Hemsworth! LOL). Who are you? How old are you? Have you made lifestyle changes already? How do you handle the anxiety/stress of being 4/4? Anything you'd like the share - I feel like just being in touch with others in this same situation would help me.

I'd love to hear from those who are 65+ with no symptoms. I'd like to know if we think gene therapy will be an option for the average person in the next 10, 20 years?

I often see that the likelihood of getting Alzheimer's is 50-60% by the age of 65 for APOE 4/4s. Is that correct?

Thanks :)
Amanda
Hello, Amanda, and welcome to the site. Thanks so much for posting.

I applaud you for choosing the sunny side. There is much hope and evidence to live long and well with ApoE4/4. I expect many on this site to chime in to share their experience.

As you may already know, the APOE4 gene does not guarantee that a person develops AD/ Dementia. There is now so much more known about the impact of nutrition and lifestyle on the development of the disease and so many resources to help support those with higher risks in making choices that can help avoid Alzheimers. At 35, you have time to take stock of how you're living and determine, one step at a time, where change can benefit your health and quality of life. There are many people in their 50, 60s and 70s living very full and cognitively healthy lives while being 4/4 as well. You will find them here.

If you haven't already checked out apoe4.info, as a Support Team Intern I'm happy to share several tools & resources to help you get the most out of your experience here. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

Wiki Main Page contains a wealth of information.

If you are interested in learning more about other members check out Our Stories.

Again, I am so glad you joined our forum. Stay positive and curious. Please feel free to reach out anytime.

Warmly,
Therese
Daughter of Mother living with Vascular Dementia
Registered Dietitian Nutritionist (RDN)
Functional Medicine Certified Health Coach (FMCHC)
Nationally Board Certified Health and Wellness Coach (NBC-HWC)
Still learning
NF52
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Re: Where my APOE 4/4s at?!

Post by NF52 »

radkam01 wrote: Thu Jan 04, 2024 11:22 am Hello!

I'm a 35 y.o. female - found out I was APOE 4/4 probably about 5 years ago. My grandmother died of Alzheimer's at 72 and started showing symptoms around 65.

I'd like to just hear from other 4/4s. I know people feel anxiety about being APOE 3/4, but I would feel more comfort hearing from the lucky 2-3% of the population who are 4/4 with me (special shout to to Chris Hemsworth! LOL). Who are you? How old are you? Have you made lifestyle changes already? How do you handle the anxiety/stress of being 4/4? Anything you'd like the share - I feel like just being in touch with others in this same situation would help me.

I'd love to hear from those who are 65+ with no symptoms. I'd like to know if we think gene therapy will be an option for the average person in the next 10, 20 years?

I often see that the likelihood of getting Alzheimer's is 50-60% by the age of 65 for APOE 4/4s. Is that correct?

Thanks :)
Amanda
Hi Amanda!
I'll happily include myself in any group with Chris Hemsworth--although I suspect the only thing we have in common is ApoE 4/4 and ancestors from the UK. But I love that he's been open about his discovery and is using it to create awareness of just how lucky we are to have this knowledge. I'm a 71 year old female--72 in a few months, and here's some of what I've learned since finding out my status 10 years ago:
  • It's okay to feel periodic waves of anxiety; and to recognize that people without ApoE 4/4 may not "get it"
  • It's important to take that anxiety and stress and channel it into empowerment, in whatever forms work for you. That might be a playlist of your favorite songs (Katy Perry's Roar is one my two wonderful grandchildren sing in their sweet voices:
I got the eye of the tiger, a fighter
Dancing through the fire
'Cause I am a champion, and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion, and you're gonna hear me roar
  • Take the advice of stoics, who don't take anything, but reframe what they do and think about adversity: “A Stoic is someone who transforms fear into prudence, pain into transformation, mistakes into initiation, and desire into undertaking.”― Taleb Nassim Nicholas
  • Tell yourself you are not your grandmother, who was born two generations before you. If she's like my almost-35 year old son's grandmothers, she was born in 1921, grew up with air pollution from smokestacks, limited educational opportunities, limited opportunities for a fulfilling career, and no referrals to cardiologists, no understanding of high blood pressure or high cholesterol and a 'typical" American diet of lots of meat, processed foods and trans fats. There's at least a 30% chance that she didn't have Alzheimer's, but had vascular dementia, from heart disease, because that was found in studies of people in the 1980's and 1990's and early 2000's who were diagnosed as having "Alzheimer's" when they went back and tested their blood or looked at autopsied brain for amyloid or tau.
Most importantly, tell yourself that you have your whole adult life to make 1000's of small and big choices that will help your brain, and to see what science comes up with, given intense interest in our lucky cohort!

At age 71, I planned out every detail of a 16-day trip this past fall to 8 cities in Spain and Portugal with my husband, with planes, trains, buses and 4 to 7 miles of walking each day! While I was there, I mentored a new Consumer Reviewer over a Zoom call for a grant review panel of TBI grants funded through the Dept. of Defense, and then another new person the week after I got back, along with completing 12 critiques of applications myself and then driving in rush-hour traffic round trip to the DC area three different times in the last month! I'm not a super-ager; we have Board members and Moderators in their 60's with ApoE 4/4 and I know of a recently retired law professor and a still-sitting judge with ApoE 4/4--the latter in her late 70's. I also know of forum member close to 80 who in the last decade consistently scored in the average or better range on testing in a study in CA, who was a state-appointed ombudsman for people in assisted living facilities.

Most, possibly all of us, have cared for relatives with AD or other cognitive impairments. We are working to make this a diagnosis that is preventable, modifiable, treatable and reversible. You can make us proud by being the Millenial generation that will prove our optimism right!

Nancy
4/4 and still an optimist!
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Re: Where my APOE 4/4s at?!

Post by rrmolo »

What a great response we just read from Nancy. I'm soon to be 84 and love to be active. I walk daily, play pickle ball, belong to two book groups and live with my husband and help keep up the house and yard. There is so much more info coming out daily and aren't we lucky to have these on line resources? The secret is counting all your blessings every day!
aradke11
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Re: Where my APOE 4/4s at?!

Post by aradke11 »

Thank you for the encouraging, funny and hopeful
replies! This is the kind of response and feedback I need to see in order to remind myself to look on the bright side of things when I start to turn too far inward. So grateful to have this community to turn to.
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Re: Where my APOE 4/4s at?!

Post by TPE »

aradke11 wrote: Tue Jan 09, 2024 10:30 am Thank you for the encouraging, funny and hopeful
replies! This is the kind of response and feedback I need to see in order to remind myself to look on the bright side of things when I start to turn too far inward. So grateful to have this community to turn to.
Hello, and welcome to the site! Isn't this an amazing place? I agree, so much information, encouragement and hope is here with a sprinkle of humor. It sounds like you're in tune with what you need when you need it.
We'd love to hear a bit about yourself when you're ready.

You may be brand new to the site or have been exploring for awhile. As a Support Team Intern I get to adorn you with information about the site and provide a hardy welcome.

The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

The Wiki tab above is a treasure trove of information of all sorts.

If you are interested in learning more about other members check out Our Stories.

We're so glad you found us and we hope you get what you need here. Please feel free to reach out, ask questions, and share your story. Know that you are very welcome here.

Warmly,
Therese (TPE)
Daughter of Mother living with Vascular Dementia
Registered Dietitian Nutritionist (RDN)
Functional Medicine Certified Health Coach (FMCHC)
Nationally Board Certified Health and Wellness Coach (NBC-HWC)
Still learning
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K-dot
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Re: Where my APOE 4/4s at?!

Post by K-dot »

::poking out of hiding::

Just learned I was 4/4 two weeks ago. This is my first post. 45/f, suspect my grandmother [maternal] and aunt [maternal] died with AD, so decided to have the test at this year's physical after reading Outlive.
Last edited by K-dot on Wed Feb 21, 2024 6:13 pm, edited 2 times in total.
"The future is not set. There is no fate but what we make for ourselves." John Connor, Terminator 2
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Re: Where my APOE 4/4s at?!

Post by JennyR »

K-dot wrote: Wed Feb 21, 2024 6:11 pm ::poking out of hiding::

Just learned I was 4/4 two weeks ago. This is my first post. 45/f, suspect my grandmother [maternal] and aunt [maternal] died with AD, so decided to have the test at this year's physical after reading Outlive.
K-dot! Thank you so much for poking yourself out of hiding and taking the brave step to post. You've definitely found yourself a warm and supportive community to welcome you.

First things first, you're in good company. I know it can feel really overwhelming getting the news, and maybe even connecting the dots about family history, etc, but hopefully you are feeling empowered with the information and the knowledge that you can take steps to mitigate your risks going forward. Besides testing, did you have other takeaways from Outlive?

I know you've had a couple weeks to poke around the site and I'm sure you've already found a plethora of information but as a Support Team Intern, I wanted to make sure you had a few basic tools & resources to help you get the most out of your experience here. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4 like you. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-to-Guide. It includes topics such as navigating the forum, private messaging, and searching.

Again, I am so glad you joined our forum. We're all here to support you in whatever way is most helpful for you! Please feel free to reach out anytime with additional questions and do please keep us updated on your journey.
With love, in health,
Jenny
Functional Medicine Certified Health Coach (FMCHC)
National Board Certified Health and Wellness Coach (NBC-HWC)
MBA
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