New Member with one e4 copy.

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
CurlyMJM69
Contributor
Contributor
Posts: 3
Joined: Tue Feb 05, 2019 6:52 pm

New Member with one e4 copy.

Postby CurlyMJM69 » Tue Feb 05, 2019 7:49 pm

Hi, My name is Mark I am 61 years old and just found out tonight I have one copy of the e4 variant. My Mom started showing signs of Alzheimer's at 65 and spent 18 years wasting away from this hideous disease. I was her caretaker for those 18 years and she passed in my arms from pneumonia. Her brother also contracted Alzheimer's in his mid 60's. He passed away the day after my Mom's funeral also from pneumonia. Now, my Mom's youngest sister is showing signs of the disease in her late 70's. I have been going back and forth on when to retire. With this news, I may just retire tomorrow. Looks like I won't need my money to last till 90 :( No more nursing homes for me. If the disease strikes I will go out on my terms. Let's pray there is a major breakthrough soon. I will be reading all I can to see what steps I can start now to hold this disease off as long as possible. Prayers to all!!!

NF52
Support Team
Support Team
Posts: 866
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: New Member with one e4 copy.

Postby NF52 » Tue Feb 05, 2019 8:55 pm

CurlyMJM69 wrote:Hi, My name is Mark I am 61 years old and just found out tonight I have one copy of the e4 variant... I have been going back and forth on when to retire. With this news, I may just retire tomorrow. Looks like I won't need my money to last till 90 :( No more nursing homes for me. If the disease strikes I will go out on my terms. Let's pray there is a major breakthrough soon. I will be reading all I can to see what steps I can start now to hold this disease off as long as possible. Prayers to all!!!
Welcome CurlyMJM69!

You will receive lots of welcomes from our members, but I wanted to share a few quick thoughts:

First, you can certainly retire tomorrow if that makes sense! I found out that I was ApoE 4/4 when I was your age, and it felt like a gut punch. I was semi-retired, working as a consultant full-time for part of the year. Yet, I'm glad I didn't retire immediately and kept taking on new jobs until early 2015. By then I had one grandchild and another on the way, and had read enough to realize that I was not doomed to get Alzheimer's, even with two copies of ApoE 4 and a mother, several maternal aunts and a paternal grandmother who all had mixed dementia (vascular and Alzheimer's) in their 80's.

Here's some reasons why my fate will be different than their fates, I think:
1) I don't have the same risk factors they all had: uncontrolled high blood pressure, untreated diabetes, untreated anxiety and/or depression--although all were smart, capable women who endured hardship and suffering during a childhood in the Depression--probably like your mother and her brother.
2) I was lucky enough to have more education than my mother, which allowed me to have a challenging career with opportunities for problem-solving, new roles every few years, and lots of engagement with diverse people who taught me that we can't always choose the roads our lives take, but we can adapt our responses to find purpose and joy and feel empowered.
3) I am lucky to live in a country that cleaned up air and water pollution, took lead out of gas and paint and took chemicals out of food. My mother grew up in a poor neighborhood with 10 siblings and her early brain development may have been compromised because their were 13 mouths to feed (and she was the 12th).

Research meta-analyses of several thousands of people in four cohorts studied over decades in the U.S. and the Netherlands, (Including the famous Framingham Health Study), resulted in a 2017 prediction of the risk of either Mild Cognitive Impairment (MCI) or dementia by the age of 85 (the average US lifespan) for people like you and me--those ages 60-75. Here's a quote:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2).
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

So at almost 67, I am still able to read scientific articles, and am in a clinical study which required that I be cognitively healthy to enroll 18 months ago, and have done no worse on the semi-annual tests since then. I have no guarantee that I will be among the 45-70% of people with ApoE 4/4 who do NOT get Alzheimer's. I only know that the more I learn about what we can control and how fast the science is progressing about both the disease itself and the methods to attack it, including lifestyle interventions, the more confident I feel.

So stick around, and see if you don't feel better also in a month or two!
4/4 and still an optimist!

User avatar
Sara
Support Team
Support Team
Posts: 208
Joined: Mon Jul 03, 2017 4:44 pm
Location: Between PA and FL
Contact:

Re: New Member with one e4 copy.

Postby Sara » Tue Feb 05, 2019 10:10 pm

CurlyMJM69 wrote:Hi, My name is Mark I am 61 years old and just found out tonight I have one copy of the e4 variant.


Greetings Mark and welcome to the apoe4.info site! You have been through so much with your family. Yet, there is so much information and opportunity available today to prevent and reverse Alzheimer's Disease and you are at the perfect point in your life to initiate some of these strategies! An excellent place to learn more about prevention is the Primer which was compiled by Stavia, our physician member and E4/E4. Another great source is Dr. Bredesen's book, The End of Alzheimer's Disease. If you read through Our Stories on this site you will find many stories of optimism and success - of individuals who have halted and reversed decline. In Dr. Bredesen's book there are documented cases of individuals who stopped work and then returned to work. Wishing you the best!
Functional Medicine Certified Health Coach, FMCHC, MBA
IFM / Bredesen Trained - Reversing Cognitive Decline - ReCODE 2017
FMCA / Bredesen Trained - Reversing Cognitive Decline For Coaches, 2018

mike
Contributor
Contributor
Posts: 412
Joined: Fri Mar 09, 2018 4:55 pm
Location: CA - Sonoma County

Re: New Member with one e4 copy.

Postby mike » Wed Feb 06, 2019 9:35 am

[quote="CurlyMJM69"I have been going back and forth on when to retire. With this news, I may just retire tomorrow.[/quote]

Hi Mark, and welcome! As was mentioned, as a 3/4, you have a 75-80% chance of NOT getting AD by age 85. And these odds can be bent in your favor. I'm not sure what you do for a living, but the brain is like a muscle - if you stop using it, it withers. If you are doing something that is mentally challenging, and you enjoy it, then no reason to stop. There are also social benefits - interactions with others is also helpful. If you don't enjoy it, or it causes stress, and you can afford it, then maybe retirement is the right choice. If you do retire, make sure to do things that stimulate your brain, and make sure to stay socially active. And remember, this is not a sprint. Don't do anything rash. Evaluate your life style and look for areas to improve. Step by step. Become educated.
Sonoma Mike
4/4

Gillyp
Contributor
Contributor
Posts: 62
Joined: Sat Aug 18, 2018 3:22 pm

Re: New Member with one e4 copy.

Postby Gillyp » Wed Feb 06, 2019 10:28 am

A warm welcome to the community CurlyMJM69.

I couldn't agree more with the other posts here. You've been through so much with your family. Your story shows your love and resilience. With the family history and experiences you have had it's easy to look at being a 3/4 through that lens. Your story can be very different. If you enjoy the work you do; if it stimulates you and brings you more connections in life then savor it for as long as you can. Keeping engaged is just one of the many strategies you can use to keep healthy - and it's an important one.

You'll find lots of support from this community. We are here to learn from one another as well as share our experiences, thoughts and insights to help each other. As mentioned already the Primer is the best place to start. See what subjects resonate with you and dig further. If you have questions make sure to post them. Again, welcome.
ND, Functional Medicine Certified Health Coach
FMCA/Reversing Cognitive Decline - Pending Fall 2018

CurlyMJM69
Contributor
Contributor
Posts: 3
Joined: Tue Feb 05, 2019 6:52 pm

Re: New Member with one e4 copy.

Postby CurlyMJM69 » Wed Feb 06, 2019 12:53 pm

23andme test states I have one e4 variant. How do I find out what the other variants are?

Its Me
Contributor
Contributor
Posts: 33
Joined: Tue May 02, 2017 10:16 am

Re: New Member with one e4 copy.

Postby Its Me » Thu Feb 07, 2019 6:16 pm

CurlyMJM69 wrote:23andme test states I have one e4 variant. How do I find out what the other variants are?

You can click to download your data set from 23andMe to your computer (look to the right of your name at the top right for menu choices - browse raw data). From there you can upload the file to the promethease website. $12 is all it costs to have your data viewable in their reports. Their reports lists data by various filters, and has link to the SNPedia for explanations and links to more.

https://promethease.com

And here is a great video on how to use promethease.
https://www.youtube.com/watch?v=xwendzsqtkE

You are like me with one 4. I found I am 4/3 at promethease. Did you consider that your relatives were 4/4 or had other medical conditions that predisposed them more to alzheimers? I am in my 70's and doing great. Great cholesterol, and very good health. Regular moderate exercise, eat healthy (think Mediterranean and Weight Watchers). Don't drink or smoke. Challenge my brain.

Its Me
Contributor
Contributor
Posts: 33
Joined: Tue May 02, 2017 10:16 am

Re: New Member with one e4 copy.

Postby Its Me » Thu Feb 07, 2019 6:21 pm

I would also say that caregiving can be hell. I belong to the local United Way Caregivers Coalition. I go actually for caring for myself. Lots to learn and share, very supportive. And I see such difficult situations that caregivers have in caring for others, often multiple people. Do you have good support ?

mike
Contributor
Contributor
Posts: 412
Joined: Fri Mar 09, 2018 4:55 pm
Location: CA - Sonoma County

Re: New Member with one e4 copy.

Postby mike » Fri Feb 08, 2019 12:16 pm

CurlyMJM69 wrote:23andme test states I have one e4 variant. How do I find out what the other variants are?


The most common is e3, much less common is e2. You are probably 3/4.
Sonoma Mike
4/4

CurlyMJM69
Contributor
Contributor
Posts: 3
Joined: Tue Feb 05, 2019 6:52 pm

Re: New Member with one e4 copy.

Postby CurlyMJM69 » Wed Feb 13, 2019 4:50 pm

It's Me, thank you for the information on promethease. I uploaded my data and I am 3/4. However, I found I have a genetic variant of the Sortilin 1 Gene that is associated with reduced risk of Alzheimer’s disease. So, maybe it's a wash, one can only hope and be positive.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 4 guests