Scared!

A primer for newbies and old pros alike.
User avatar
CindiRN
Contributor
Contributor
Posts: 7
Joined: Tue Dec 24, 2019 11:33 am

Scared!

Postby CindiRN » Tue Dec 24, 2019 11:44 am

My name is Cindi. I just got my results yesterday from the DNA health test I did with 23andme. I have 2 copies of apoe4, one from each parent. I am a nurse and have seen first hand the devastation Alzheimer's does to families and patients. I am in shock and scared. I am 50 and have no immediate family members with Alzheimer's so I had hoped it would detect no genetic risk when I did the test.

I am happy I found this group and I think it will be helpful for me to interact with others out there with the copy of this gene also.

Merry Christmas my friends!! :)
E4/E4

“We have nothing to fear, but fear itself.” – Franklin D. Roosevelt

NF52
Support Team
Support Team
Posts: 1311
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Scared!

Postby NF52 » Tue Dec 24, 2019 4:07 pm

CindiRN wrote:My name is Cindi. I just got my results yesterday from the DNA health test I did with 23andme. I have 2 copies of apoe4, one from each parent. I am a nurse and have seen first hand the devastation Alzheimer's does to families and patients. I am in shock and scared. I am 50 and have no immediate family members with Alzheimer's so I had hoped it would detect no genetic risk when I did the test.

I am happy I found this group and I think it will be helpful for me to interact with others out there with the copy of this gene also.

Merry Christmas my friends!! :)
Merry Christmas to you also, Cindy, from someone who could be your older ApoE 4/4 sister! You initial reactions are exactly how I felt in February 2014 (just before Valentine's Day) when I saw my results on 23&me. Getting the results before Christmas is, as another member said, "Not funny!"

Here's some things to remember during this first days and weeks:
Genes are not destiny!
The single greatest association with a diagnosis of Alzheimer's is advanced age, not ApoE 4. In 2017, a meta-analysis of four large cohorts that was done as part of the informed consent for participants in the Generation Study of healthy Apoe 4/4s between the ages of 60 and 75, found that the population-based risk for a diagnosis of either Mild Cognitive Impairment (MCI) or Alzheimer's by the age of 85 is far less than studies based on referrals to memory care clinics:
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 Those percentages may be much lower for you. They were analyzed for study participants between 60-75.

And even for my age group, it seems we may be able to change our destiny. I'm 67, and have been fully tested twice a year for almost 3 years and am still well within normal ranges (I used to test kids in school, and know what the normal ranges are.) So the often-cited "average" age of diagnosis of AD at 68 for 4/4s is based on OLD information!! I know of people in their 60's and 70's with ApoE 4/4 who are teaching law school, writing books, tutoring refugees, acting as ombudspersons in assisted living centers, driving across country, and reading scientific articles I could only begin to comprehend. All of us hope to prove that ApoE 4 is a risk that can be managed!

Unfortunately, many people who have been diagnosed with Alzheimer's, including those you have seen and those in my own family, had multiple unrecognized risk factors, including diabetes, uncontrolled high blood pressure, untreated mental health issues, unrecognized coronary artery disease or vascular disease, obstructive sleep apnea and high trans fat diets. Most didn't know that Vitamin B-12 is important to brain health, and Vitamin D-3 may be also. Few women of my mother's age thought it was "lady-like" to exercise enough to sweat, and so developed osteopenia and frailty. Many had limited educational opportunities and occupational challenges.

You have likely avoided all those serious risks! Prevention in mid-life (right where you are) seems ideal for a long, healthy brain.
People on this forum are committed to the idea that we have many tools available to us to support our brains. Some of the best ideas for this are described in the Primer, written by a physician who is also ApoE 4/4. She reminds us to be kind and patient as we adjust to this news.

I hope you take a few moments this holiday season to give yourself permission to feel on a rollercoaster, and to trust that you will feel more empowered and more ready to live life with purpose and joy very soon. We are all here to support you whenever and however you need!
Hugs from your genetic "sister".
Last edited by NF52 on Wed Dec 25, 2019 11:32 am, edited 3 times in total.
4/4 and still an optimist!

User avatar
HopefulCaroline
Contributor
Contributor
Posts: 63
Joined: Thu Aug 08, 2019 3:54 pm
Location: New York City

Re: Scared!

Postby HopefulCaroline » Wed Dec 25, 2019 10:40 am

CindiRN wrote:My name is Cindi. I just got my results yesterday from the DNA health test I did with 23andme. I have 2 copies of apoe4, one from each parent. I am a nurse and have seen first hand the devastation Alzheimer's does to families and patients. I am in shock and scared. I am 50 and have no immediate family members with Alzheimer's so I had hoped it would detect no genetic risk when I did the test.

I am happy I found this group and I think it will be helpful for me to interact with others out there with the copy of this gene also.

Merry Christmas my friends!! :)



Dear CindiRN,

Merry Christmas and welcome to the site! You have certainly come to the right place. NF52 shared some hopeful and more current information regarding risk. She also pointed you to the Primer which was written by a 4/4 physician member of our team and is a useful guide with super helpful information such as prevention strategies. The Wiki is also something I would read through as it includes details about protocols that some members have followed with great success such as the Bredesen Protocol. You can also find a list of ApoE4 Aware practitioners and other resources. The search function is a handy place to look for answers to specific questions.

Thank you for visiting us. We hope you stay engaged with our community. You will find support, knowledge and a very caring group of fellow ApoE4 carriers.

Have a happy and hopeful holiday!

Sincerely,
Caroline
Caroline
ApoE4.info Intern
Functional Medicine Certified Health Coach
“What grows never grows old.” -Noah Benshea

User avatar
CindiRN
Contributor
Contributor
Posts: 7
Joined: Tue Dec 24, 2019 11:33 am

Re: Scared!

Postby CindiRN » Wed Dec 25, 2019 11:27 am

NF52 and Caroline thank you so much for replying. I can't express how much better I feel after reading the reassuring information you gave to me. I am also looking forward to having time to go through all the wealth of information in this group!

Thank you so much for making me feel like I am not alone, that's a great feeling!
E4/E4

“We have nothing to fear, but fear itself.” – Franklin D. Roosevelt

Online
User avatar
floramaria
Support Team
Support Team
Posts: 814
Joined: Tue Jul 04, 2017 11:22 am
Location: Northern New Mexico

Re: Scared!

Postby floramaria » Wed Dec 25, 2019 12:34 pm

CindiRN wrote:NF52 and Caroline thank you so much for replying. I can't express how much better I feel after reading the reassuring information you gave to me. I am also looking forward to having time to go through all the wealth of information in this group!

Thank you so much for making me feel like I am not alone, that's a great feeling!

Hi CindiRN, I want to add my welcome to those you have received for NF52 and Caroline. You have found a good place, with boundless information and an active and wonderfully supportive community. I have learned a tremendous amount here; the information provides a brighter picture by far of our potential futures than the bleak one often associated with our ApoE4 alleles.
Getting and keeping ourselves healthier than the general population and monitoring basic biomarkers of health serves us well. In sidestepping the increased risk of Alzheimer’s by reducing inflammation, keeping blood pressure within healthy range, maintaining insulin sensitivity, getting enough sleep and exercise, and reducing stress, we are following steps that increase our odds of living long healthy lives in mind and body, since problems with these factors underlie other chronic diseases as well. ( as I am sure you know as an RN)
We have a growing body of information available on how to maintain optimal cognitive function regardless of genetic alleles. And you’ll be able to tap into a great deal of that here, on the website.
Sending best wishes to you!
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)

User avatar
CindiRN
Contributor
Contributor
Posts: 7
Joined: Tue Dec 24, 2019 11:33 am

Re: Scared!

Postby CindiRN » Wed Dec 25, 2019 7:49 pm

floramaria wrote:
CindiRN wrote:NF52 and Caroline thank you so much for replying. I can't express how much better I feel after reading the reassuring information you gave to me. I am also looking forward to having time to go through all the wealth of information in this group!

Thank you so much for making me feel like I am not alone, that's a great feeling!

Hi CindiRN, I want to add my welcome to those you have received for NF52 and Caroline. You have found a good place, with boundless information and an active and wonderfully supportive community. I have learned a tremendous amount here; the information provides a brighter picture by far of our potential futures than the bleak one often associated with our ApoE4 alleles.
Getting and keeping ourselves healthier than the general population and monitoring basic biomarkers of health serves us well. In sidestepping the increased risk of Alzheimer’s by reducing inflammation, keeping blood pressure within healthy range, maintaining insulin sensitivity, getting enough sleep and exercise, and reducing stress, we are following steps that increase our odds of living long healthy lives in mind and body, since problems with these factors underlie other chronic diseases as well. ( as I am sure you know as an RN)
We have a growing body of information available on how to maintain optimal cognitive function regardless of genetic alleles. And you’ll be able to tap into a great deal of that here, on the website.
Sending best wishes to you!


Thank you for the warm welcome! ❤️
E4/E4

“We have nothing to fear, but fear itself.” – Franklin D. Roosevelt

Starfish77
Senior Contributor
Senior Contributor
Posts: 397
Joined: Mon Nov 25, 2013 4:36 pm
Location: San Francisco,CA

Re: Scared!

Postby Starfish77 » Thu Dec 26, 2019 12:29 pm

Hi CindiRN, I want to add my welcome to the list. I like NF52 description of herself as being an older ApoE 4/4 sister. I'm another older ApoE 4/4 sister who will be turning 83 soon. As others have commented, there is lots of valuable information on this site that, if followed, will help keep your brain and other parts working well for a long time. I'm sure my health, in all respects, has benefited from what I have learned here.
I'm glad you found us.

User avatar
CindiRN
Contributor
Contributor
Posts: 7
Joined: Tue Dec 24, 2019 11:33 am

Re: Scared!

Postby CindiRN » Thu Dec 26, 2019 2:23 pm

Starfish77 wrote:Hi CindiRN, I want to add my welcome to the list. I like NF52 description of herself as being an older ApoE 4/4 sister. I'm another older ApoE 4/4 sister who will be turning 83 soon. As others have commented, there is lots of valuable information on this site that, if followed, will help keep your brain and other parts working well for a long time. I'm sure my health, in all respects, has benefited from what I have learned here.
I'm glad you found us.


Thank you so much Starfish77! You're amazing at almost 83! :)
E4/E4

“We have nothing to fear, but fear itself.” – Franklin D. Roosevelt


Return to “Getting Started”

Who is online

Users browsing this forum: No registered users and 6 guests

 

 

cron