Anxiety and APOE4

[NikiB]

I’m new here. I have struggled with health related anxiety my entire life. Alzheimer’s has always been a fear of mine as I knew it ran in both my mother and father’s families. My husband forced the issue of me being tested through 23&Me so that I didn’t have any reason to worry anymore. Against my better judgment, I listened to him and while my BRCA genes came back clean, I have two copies of the late onset Alzheimer’s gene. I found out a week ago and have been in a tailspin ever since. I have had crippling anxiety and recurring passive suicidal ideations the first time in my life. I am a 45 year old woman with four children - 18,13,4 and 2. I’m so worried 24/7 about early onset, etc that I’m making myself sick. I started Dr Bredesen’s book and it made me feel even worse two chapters in. The diet itself is so overwhelming that I’m hardly eating. I lost six pounds in the first four days and I don’t have a lot of extra weight to lose (5’5” and 116 lbs last week). Can someone give me a grounding, balanced, straight forward look at reasonable things i can do to be healthy, because this isn’t living and i wish I could just go back in time and unlearn this awful news.


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[frankiesfriend]

Your anxiety is understandable, and it is overwhelming to read about the many aspects of lifestyle changes that would favor brain health. You are fortunate, however, to learn your status when you are so young and can evaluate and modify your lifestyle to avoid developing Alzheimer's. It must have been heart breaking to observe the journey into dementia of both parents. Their path is not your path.

The hopeful message you might take home from the Bredesen protocol is that Alzheimer's is preventable, and even in those already in early stages of disease, can be reversible. You can begin making changes to improve your health gradually, and as you keep learning, then incorporate more of what you believe is achievable. I am 68, and I have modified my lifestyle significantly in the last eight or so years to be faithful to exercise, eat more fruits, vegetables, some fish, nuts and whole grains, and to ditch most sugar and processed foods...in other words, a heart healthy diet. Almost no one I know eats enough fruits and vegetables. That is a good place to start.

Not everyone who is 4/4 will develop Alzheimer's. With sensible lifestyle changes now, you will lower your risk dramatically. Remember, your parent's path is not your path.

[TheresaB]

I’m so worried 24/7 about early onset, etc that I’m making myself sick.

Take a deep breath. You literally do make yourself sick when you worry.

Yeah, being an ApoE4/4 sucks, but for me learning of my status has been a blessing because there are things that can be done! That’s so awesome, there is hope! I know I don’t have to be a sitting duck waiting for dementia. At your age you’re in a great position to make positive strides, the longer you go down a negative health path, the more you have to do and the harder it is to turn and make a complete 180 degree turn.

Genes are only a person’s framework, they predispose, but they most certainly don’t predetermine. The “care and feeding” of your genes plays a HUGE influence. I saw the ball was in my court and I chose to run with it rather than run away from it. I have educated myself on the allele and know its pitfalls and try to maximize my lifestyle choices to keep my ancestral ApoE4/4 allele happy in today’s modern environment where most of the time it feels very confused. I'm not perfect with everything I do, but I try to do the best I can given certain obstacles I face.

You don’t have to do everything all at once, take things step by step attacking the one area that will likely make the biggest difference first – resolving any insulin resistance, and then go on to the next strategy. I’ve been on this road a few years now and I still change modify my health journey.

[NF52]

... I am a 45 year old woman with four children - 18,13,4 and 2. I’m so worried 24/7 about early onset, etc that I’m making myself sick...Can someone give me a grounding, balanced, straight forward look at reasonable things i can do to be healthy, because this isn’t living and i wish I could just go back in time and unlearn this awful news.

Welcome, NikiB!
It's hard for our husbands to realize just how much we truly do wish we could "unlearn this awful news". If you're like me 5 years ago and a few of my friends, it took a while to let go of the "why did you ever suggest this?!" feeling. Hopefully, over time, your husband will be the person that you know you can rely on to support you through the rollercoaster parts of this news.

We can't unlearn the "news"; but what we can do is put it into context so that it doesn't make us feel suicidal, hopeless and bereft. So I'll give some bullet points of science, and some personal perspective:
Genes are not destiny. They are turned on and off by other genes, by our environment, and by the complex interactions of millions of lifestyle factors--of which diet isn't unimportant, but isn't all-encompassing either.
The greatest risk factor for any kind of dementia is advanced age, not genes. People with ApoE 4/4 who are between the ages of 60-75 (and thus have a lot of choices already set for everything from college to how many bologna sandwiches we were given as kids) have probably only a 30-55% chance of getting either Mild Cognitive Impairment or dementia by the age of 85. That compares to the risk of Apoe 3/3 people of about 10-15%. APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

Your risk of getting either condition in your lifetime will likely be far less than mine. and I will be 67 in a few months with NO signs of cognitive impairment on batteries of tests given by a research center every 6 months as part of a clinical trial. I know of several women and men my age and in their 70's and even 80's with ApoE 4/4 who are still healthy and living independently--including one who is an ombudsperson for an assisted living facility and another who is working on an environmental law textbook!

Old statistics are almost certainly incorrect statistics. When you read in on blogs or popular news articles that you have a 90% chance of getting Alzheimers, or 9-12x risk compared to other people, just know that some of those articles are using studies like one I saw cited recently on this forum: a 1997 study of 47 families in a small region of Italy, or similar very sketchy statistics. You wouldn't read a 1997 article to pick out a new phone. Don't trust an old article to judge your health risks!

Your parents and grandparents had different risks than you: dirty air, toxic water, high rates of smoking, unhealthy diet, little recognition of cardiac risk. For example, until very recently, doctors didn't worry about high blood pressure unless the "top" systolic number was over 160; this summer a major study showed that for people with other chronic illnesses, keeping systolic pressure at 120 or less extended their cognitive health by about 7 years.
The research around the decades-long processes that lead to a diagnosis of mild cognitive impairment is being funded at more than $ 2 billion a year by the federal government, a huge increase over even a decade ago. That includes multiple studies of lifestyle interventions (diet, exercise and social networks) As a result, multiple lines of cutting-edge research are being developed. Just since 2012, CRISPR technology, a mind-boggling technique to snip out tiny parts of DNA in a gene and replace the with a corrected part, is showing the promise of radically changing how we treat people at risk of serious diseases. It's not yet ready for human trials, but it already being studied in human pluripotent cell lines and in mouse and other animal studies. So long before you have to worry about late-onset cognitive impairment , we will have a much better ability to give you personalized recommendations.

One of our wonderful health coaching interns will be welcoming you soon, but in the meantime, I'd suggest putting down Dr. Bredesen's book for a bit and instead reading Stavia's Primer . She is a doctor and 4/4 member in her late 50's who has written an easy to browse guide to how to live well with this news, and is also clear about what is known and the many things that are not known--those are the ones people here love to debate in forum posts!

She encourages all of us to prioritize a few things first, and you'll be relieved to know that diet is not among them. Don't worry about the firehose of information here, just remember that this is a site devoted to supporting each other as we find our own best path forward. For me, with 3 healthy adult children, and 2 grandchildren, and a great husband and the ability to still read, learn, travel and find purpose in life, ApoE 4/4 is not who I am--it's just a smidgen of what my DNA is.

Hugs from a 4/4 friend, Niki.

[dcox]

I’m new here. I have struggled with health related anxiety my entire life. Alzheimer’s has always been a fear of mine as I knew it ran in both my mother and father’s families. My husband forced the issue of me being tested through 23&Me so that I didn’t have any reason to worry anymore. Against my better judgment, I listened to him and while my BRCA genes came back clean, I have two copies of the late onset Alzheimer’s gene. I found out a week ago and have been in a tailspin ever since. I have had crippling anxiety and recurring passive suicidal ideations the first time in my life. I am a 45 year old woman with four children - 18,13,4 and 2. I’m so worried 24/7 about early onset, etc that I’m making myself sick. I started Dr Bredesen’s book and it made me feel even worse two chapters in. The diet itself is so overwhelming that I’m hardly eating. I lost six pounds in the first four days and I don’t have a lot of extra weight to lose (5’5” and 116 lbs last week). Can someone give me a grounding, balanced, straight forward look at reasonable things i can do to be healthy, because this isn’t living and i wish I could just go back in time and unlearn this awful news.

Welcome NikiB!
I'm always amazed by the hope filled and compassionate responses members of this community give to new members who are struggling to find their next steps or path once they find out their ApoE status. My heart goes out to you, and I send you prayers of hope and peace. As everyone else has stated your genes are definitely NOT your destiny, we now know that how we live our lives and what we eat are HUGE contributors to how our genes express themselves. There are people out there who are well into their 80's and beyond who are ApoE4/4 who have no symptoms!! Please try to find some peace and joy, turn your anxiety on its ear by finding a new perspective so eloquently given by those who have posted already.

NF52 gave some great advice if Dr. Bredesen's book seems overwhelming, I highly recommend The Primer too, it is amazing, giving you great information about ApoE4 and the journey to prevention, reversal and stopping AD. One of our of our most active members, Stavia, put it together she is a Dr. and E4/E4 herself, she truly put her heart into writing it. Here are a couple of other places you may want to check out to make using the site and navigating all the information a little easier: this page will help you learn how to use the site more efficiently "How-To" Get the most out of the ApoE4.info website, and the Wiki Page, is where you will find specific topics that can help you get started, and delve a little deeper into certain topics. For example here is a list of Simple preventive steps (found in the Wiki) that may help settle your overwhelm.

As you find your "sea-legs" look for steps that resonate with you as something you CAN do, don't worry if it is not exactly what others are doing, your path will be unique to you listen to your body. Keep the steps simple, for example try adding in more colorful vegetables to each meal (eat the rainbow), don't try to jump into everything all at once, you'll be amazed as you begin to add new things how other areas start to fall into place without much effort. Reach out here as often as you need to, there will always be someone ready with an idea, encouragement, compassion and hope to get you started and to help guide you along your journey to prevention.

Find your joy and hope in each new day and each new discovery along your path,
Deb

[Fiver]

Hi NikiB. Welcome. I hope you're able to get some rest and enjoy a little time with your family, or make some time for yourself to process everything. Sending good wishes your way. I have some experience with this sort of thing. My advice would actually be to focus on the anxiety first. Everything you do to address that will help you make progress on a long-term plan for cognitive health. And it will greatly improve your day-to-day life and health. The advice for those with anxiety - and it is fairly common - usually includes exercise, stress reduction, diet, stress relief, making good connections with people, and sometimes medication. There is evidence that all of these things can help with long-term cognition. In many cases, it is good, strong evidence that every step you take to address anxiety would be a step towards long-term cognitive health at the same time. Happy to send you the studies if reading them would help.

There was an article written about the first responses of people upon learning their apoe4 status that showed that the shock wears off over time and in replaces with a feeling that the knowledge was a good thing, that they were grateful to be able to take control of their health. (Google: Genetic in Medicine. “Well, good luck with that”: reactions to learning of increased genetic risk for Alzheimer disease by Doris T. Zallen, PhD)

Keep in mind that most people here aren't adopting lifestyle changes by themselves or all at once. Don't be overwhelmed. Take it step by step, involving your family in exercise or cooking/eating well is a win-win, and find good healthcare support of whatever type you need.

[SusanJ]

I have had crippling anxiety and recurring passive suicidal ideations the first time in my life.

This is hard news to deal with for sure, but please, please, please, call your therapist/psychiatrist right away and get in to talk this through. Long-term anxiety that spikes is not something you will get over by yourself (I have a loved one who suffers from long-term anxiety). I'm guessing you already have a support team in place but if not, get some - check with your local NAMI group for recommendations. The people involved there know the good ones.

Once you have that in place, then you can start to figure out where to make slow changes to your diet and other parts of your life, preferably with a skilled practitioner to help you prioritize.

NikiB, your life matters to your kiddos, family and friends regardless of your ApoE4 status. I also want you to know, I care. Let us know how it's going please.

[PeterM]

NikiB, please listen to these people. They are extremely knowledgeable, honest and wondrously kind. Believe them, you are NOT fated to have Alzheimer's. NOT NOT NOT. Let that soak in a bit and then go about planning a strategy that works for you now. One small change at a time. You have YEARS to figure this all out.

There are numbers of 4/4s on this site in their 70s and even 80s who are in full possession of their cognition. Can you be one of them? Of course you can. (And as you go deeper into the threads on this site you will encounter some conversations around apoe4 gene intervention that will likely become applied science in the decades to come.) There is hope around every corner. Hang in. You can do this.

[NikiB]

Thank you, thank you - everyone. I appreciate your thoughts and support so much. I am actually a licensed clinical social work who specializes in anxiety - lol. We teach what we want to learn! I am schooled personally and professionally in CBT, ACT/mindfulness and ERP. I also exercise regularly, practice yoga, meditate and eat relatively healthy - low sugar, no caffeine/alcohol. I have tried meds in the past and I don’t like how they make me feel. I have also learned what my triggers are and avoid them, when possible. That’s why this really set me off. I have a therapist I am seeing who is very helpful. I just felt so overwhelmed by all of the information out there - like most folks with GAD/OCD, I tend to take things to the extreme. So THANK YOU, thank you for speaking reason to me. It is invaluable and gives me great hope.


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[Torimintz]

Many of us here are 4/4 and have taken great measures to weigh less, eat better, and do all of the "best things" to increase our chances of thriving past 80.
Many of us have family memeber who have suffered from this and we want to not be a victim. You can do it. Let's all stick together and share our success stories. Don't despair! You can do it. Read Dr. Perlmutter and Dr. Gundry's books.