Just discovered I'm 4/4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Julestra
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Just discovered I'm 4/4

Postby Julestra » Mon Mar 09, 2020 8:23 am

Hi everyone,

Like a lot of people, I imagine, I'm here after receiving a genetic heritage and health testing kit as a gift (and what a gift! :roll: ) and discovering I'm 4/4. I was and still am really shocked - I can't think of anyone in my family ever having had Alzheimer's, although my father died young and so obviously I don't know what would have happened to him as he aged.

Alzheimer's had never affected me simply because it had never happened to anyone I know. I'm 38 and until now had felt quite youthful, but now all of a sudden I feel old and have this sense of impending doom whenever I think about the future. I'm Scottish but have lived in Italy for nearly all of my adult life, so one thing I'm feeling fairly positive about, I suppose, is the fact that I have eaten a Mediterranean diet for the last twenty years without even having to think about it. The threads on these forums have filled me with some hope and also some good advice, which I hope to follow carefully as I aim to really take a serious look at my diet and how I can improve. But I am also getting really concerned when reading other stories about people with 4/4 status who are being diagnosed at a very young age, and it makes me wonder if this is all really worth it, or if lifestyle changes can really do as much as we hope? I am divorced, live alone and don't have children or indeed any family here, so I am having all these bleak, panicked thoughts about facing an early decline with nobody to look out for me :( . I suppose I just have to try to remain calm and draw strength from the many positive stories here! Sending you all good thoughts and positivity!!!!

AKA
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Re: Just discovered I'm 4/4

Postby AKA » Mon Mar 09, 2020 12:06 pm

Julestra wrote:Hi everyone,

Like a lot of people, I imagine, I'm here after receiving a genetic heritage and health testing kit as a gift (and what a gift! :roll: ) and discovering I'm 4/4. I was and still am really shocked - I can't think of anyone in my family ever having had Alzheimer's, although my father died young and so obviously I don't know what would have happened to him as he aged.

Alzheimer's had never affected me simply because it had never happened to anyone I know. I'm 38 and until now had felt quite youthful, but now all of a sudden I feel old and have this sense of impending doom whenever I think about the future. I'm Scottish but have lived in Italy for nearly all of my adult life, so one thing I'm feeling fairly positive about, I suppose, is the fact that I have eaten a Mediterranean diet for the last twenty years without even having to think about it. The threads on these forums have filled me with some hope and also some good advice, which I hope to follow carefully as I aim to really take a serious look at my diet and how I can improve. But I am also getting really concerned when reading other stories about people with 4/4 status who are being diagnosed at a very young age, and it makes me wonder if this is all really worth it, or if lifestyle changes can really do as much as we hope? I am divorced, live alone and don't have children or indeed any family here, so I am having all these bleak, panicked thoughts about facing an early decline with nobody to look out for me :( . I suppose I just have to try to remain calm and draw strength from the many positive stories here! Sending you all good thoughts and positivity!!!!


Hello Julestra!

Welcome to the community, you are in the right place! I am impressed that you have already found the apoe site and are motivated to optimize your already healthy habits. It certainly is a shock when first learning that we carry an allele, I think most of us felt the same way. Overtime, I have come to learn that there are many modifiable lifestyle factors that are noted in the research and being so young, you have plenty of time to put them into place.

It looks like you have had a chance to look around the site, but I would like to direct you to a few places that might be helpful to you. First, the primer is a great introduction to apoe4, it was written by a member physician. Also the Wiki pages are chock-full of information, you can find the main page here. There are forum topics, meetup information and so much more on the site, you can search topics under the Forum.

Again Welcome, Julestra! You are not alone, I look forward to moving along the journey with you.

Warm regards,
AKA

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floramaria
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Re: Just discovered I'm 4/4

Postby floramaria » Mon Mar 09, 2020 12:53 pm

Julestra wrote:The threads on these forums have filled me with some hope and also some good advice, which I hope to follow carefully as I aim to really take a serious look at my diet and how I can improve.
Hello, Julestra, welcome!
As AKA says, Your sense of impending doom on learning your ApoE4/4 status is a natural and quite common reaction. Fortunately you are also getting a really early start on addressing lifestyle changes that according to many studies have a huge impact on long term cognitive health. I hope you will find it reassuring to know that the ApoE4/4 genetic type is not generally associated with Early Onset Alzheimer’s Disease. It is surprising to me that you are reading a lot stories about people who are ApoE4/4 being diagnosed at a very young age; I would surmise that there are other major contributing factors. It is no wonder that you you have questions about efficacy of making changes as you grappling with fear and considering a whole new aspect of your life; you’ll notice as you read through threads on this site that there are MANY people here who share your ApoE status and who are enjoying excellent cognitive health through their 60’s 70’s and 80’s.

Julestra wrote: and it makes me wonder if this is all really worth it, or if lifestyle changes can really do as much as we hope
As you read the about the personal experiences of many people on the website, I think you’ll see that making the changes really is worthwhile. And as you say, remaining calm and drawing strength from the many positive stories here is a good way to go.

Sending you best wishes,
Floramaria
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)

donbob
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Re: Just discovered I'm 4/4

Postby donbob » Mon Mar 09, 2020 2:16 pm

Julestra wrote:Hi everyone,...Alzheimer's had never affected me simply because it had never happened to anyone I know...!!

Genetics is outside my area of experience. I don’t know what the false positive rate is for APOE4. An error could occur in obtaining the raw data or in the analysis and reporting results. However, occasionally in my engineering career unexpected test results were retested.

Your age is in your favor. Time to sort out the validity of this test and still plenty of time to formulate your plan of action. Best wishes.
DonBob
e3e4

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Re: Just discovered I'm 4/4

Postby slacker » Tue Mar 10, 2020 9:46 am

Other members have expressed concern about the accuracy of their ApoE results with direct to consumer lab companies. Some of these folks have retested with other companies. Finding these stories on our website would be challenging! I don't recall anyone announcing different results, but this is completely anecdotal. It's doubtful that anyone knows what the true false positive rate is.

That being said, here is one person's experience with inaccurate genetic test results.
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PRESCOTT
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Re: Just discovered I'm 4/4

Postby PRESCOTT » Thu Mar 12, 2020 7:14 am

Assuming your test results are correct, my thoughts are with you, I too am APOE 4/4, I too discovered this fact “unwittingly “. I too had parents, various aunts and uncles that died young, I have no known cases of Alzheimer’s n my family line, though in hindsight, I realized that two of my uncles died of heart disease. It took me a while, following my genetic news to consider getting a Cardio checkup, me, a healthy relatively thin person, presuming I was on a good diet. I found to great surprise that I have moderate heart disease through Lipid Panel blood work and a Cardio CT scan. What a wonderful relief to learn this, to actually have the chance to take serious action that has changed my Cardio risk factor in a tremendous and calculated fashion. I am about to turn 69, I do have subjective mild cognitive impairment, diagnosed a year ago. I have actually greatly improved that through dietary and lifestyle changes, some challenging. All of this has been a journey and continues to be, though I am so grateful, I feel empowered. If you have not already discovered Dr. Dale Bredesen, look him up, get his book by ALL means, check his RECODE Program. I have found the topic of Epigentics to be quite interesting, very encouraging. This forum, the stories, vast informative resources, members, is the foundation and basis of my A4 response. I wish you the best of luck with your response to the news.



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Julestra
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Re: Just discovered I'm 4/4

Postby Julestra » Sun Mar 15, 2020 1:34 pm

Thanks so much, everyone, for your considerate, sympathetic replies and in particular for your helpful advice. It's so great that this community exists and I feel really comforted to know that I am totally alone to deal with this information! Regarding the possibility of a false positive result, I believe this is unfortunately unlikely. My results have now been tested twice and the outcome is the same, so there is really little to no chance of them being wrong. I hadn't heard about Dr. Bredesen until now and I'ver just placed an order for the book, which I look forward to reading whenever it finally arrives (here in Italy everything is in full lockdown due to the COVID-19 situation). I've also purchased the meditation app "Headspace" which I am really enjoying - not sure what people's thoughts are about meditation and whether it can do any good, but I've found it really helpful with keeping calm and focused and I figure that can't be a bad thing! Thank you again and sending the very best to everyone.

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RAJ64
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Re: Just discovered I'm 4/4

Postby RAJ64 » Mon Mar 16, 2020 5:33 pm

Julestra wrote:I've also purchased the meditation app "Headspace" which I am really enjoying - not sure what people's thoughts are about meditation and whether it can do any good, but I've found it really helpful with keeping calm and focused and I figure that can't be a bad thing! Thank you again and sending the very best to everyone.

Hello Julestra! You will find many people do experiments of n=1 here, which means experiments on themselves. The situation in Italy with COVID-19 would indeed be very concerning and stressful. You have done an experiment with Headspace which has been of great help to you at this time. Fantastic! Reducing stress always provides a boost to the immune system and to our mental health states. That's a win/win in my estimation. ;) Keep up the good work and stay calm, my thoughts are with you and the rest of the world at this time. <3

Warmly,
Rachel
RAJ64, BSN, RN
ApoE4.info Intern
Functional Medicine Certified Health Coach
With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt

Starfish77
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Re: Just discovered I'm 4/4

Postby Starfish77 » Thu Mar 19, 2020 12:51 am

Hi Julestra, I discovered I was an e4/e4 on 23andme. I had joined because I wanted to use the genealogy info and the health info was a bonus. Like you I only had no close family members with Alzheimers. When I joined APOE4.info it inspired me to improve my health.
I had yoyo dieted all my life. Now for the past seven years have been normal weight. One of the best things that happened to me was having a calcium heart scan that many of us took advantage of before one of our conferences. My results showed that only ten percent of people my age had more calcium in their hearts than I did. I took the results to my primary physician and I was assigned a cardiac specialist and am doing very well. All the things you learn to do here will keep you in good general health so you will be less likely to suffer from other diseases like diabetes, heart problems and many other things. That you have eaten a Mediterranean diet for so many years is a marvelous start. I've been a member of this group for about seven years now. I know I'm in so much better health than I would have without it. Starfish77 e4/e4 female age 83


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