Anxiety and APOE4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
PeterM
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Re: Anxiety and APOE4

Postby PeterM » Mon Jan 21, 2019 7:13 am

You actually made me laugh out loud so that's a good sign already. Gotta keep the humor. And how fortunate you are have such a skill set to more efficiently move you forward. And just to reiterate: You're only 45! So much time to take smart measures while letting the apoe4 science emerge. And in the meantime this site is a near bottomless well of information and encouragement.

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Re: Anxiety and APOE4

Postby Jdeppe123 » Wed Jan 23, 2019 12:25 pm

Hello NikiB,
I agree with TheresaB that you can absolutely make yourself sick by worrying... I my self carry the 3/4 combination which increases the risk of Alzheimer's. Just because we carry this combo (4/4 3/4) it doesn't mean that this is our future. I am a 62 year old man. I eat all organic, no added sugar and try to stay away from all sugar, I am in the gym 3 to 5 days a week and for me I choose to eat a very low fat diet. The only oils including cooking that we use are high grade olive and grape seed (cooking). It is my understanding that with any 4 combination that we do not process certain proteins and fats the way we should. I also keep my carbs to a min as well. My family history is riddled with Heart Disease and Dementia all due to lifestyle... For the past 5 years I had been having chest pains only during Cardio but because I was in great shape it never dawned on me that I was having heart problems. 23&Me revealed the 3/4 combination and it made sense. I was told that I was it would greatly benefit me to eat good fats including clean meats etc. Sounds like Paleo huh? Well with this 3/4 combination it was literally killing me. Feb 12th of 2018 I had a triple bypass and Heart Valve replacement. All that to say is there is quite a bit of info out there regarding our condition. I know intermittent fasting and lots of cardio has helped me and I feel amazing. The fact that you know what you have gives you an awesome opportunity to really commit and change everything. To be clear, my condition (bypass) is not a symptom of the 3/4 or 4/4. Had I known of this when I was years younger, I would of probably not have had to have the surgery. This is why I say that if you change your perspective to "now I know and lets do this" there is absolutely no reason why you cannot have an amazing life with your husband and family. Everything that I have shared with you has been my experience. I would also suggest blood work regularly to watch cholesterol. If you would like to you can send me a private message as I have blood panel suggestions as well. These panels were suggested to me and are not just the normal lipid panels.
Seriously Niki.... If you have questions please reach out... Stay Positive and know that "You are not your thoughts"

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Re: Anxiety and APOE4

Postby GemmaJ » Sat Jan 26, 2019 6:23 am

Hi NikiB,

I have been a member of this forum for nearly two years now but rarely post as I feel very 'plebian' compared to some of the amazing people on here who are far more expert than me. I too am an incredibly anxious person and it knocked me for six when I found out my 4/4 status in April 2017. As a naturally skinny person, I have always struggled with my keeping my weight up and more so than ever now that I adhere to the 'Alzheimer's Diet' (Try to follow Gundry but end up on Bredesen as he's less strict and sometimes there's no option - I'd rather eat beans than nothing at all as I currently only weigh 100lbs and am 5'5!)

The reason I'm telling you this is that you sound a bit like me with your worrying and what I have learnt and try to remind myself is that this CANNOT define my life. I could be run over tomorrow, who knows? With this in mind, I am sometimes just kind to myself. I do allow myself a glass of red wine once a week or on special occasions my absolute favourite, a glass of champagne, or a few squares of dark chocolate or whatever because the thought of never enjoying/tasting/sharing those things again in my life is a lot sadder than the thought of dying of Alzheimer's after starving myself of the joy they can occasionally bring.

This forum is amazing. So much advice, sometimes overwhelmingly so, but you will always find a friend here.

I hope you can relax a bit and begin this new adventure more calmly now. I send you lots of positivity. X

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Re: Anxiety and APOE4

Postby JudyH » Sun Feb 03, 2019 7:39 pm

Niki - I am e3/e4 , not e4/e4 but let me give you a different perspective. My grandmother died at 42 years old from a heart attack, orphaning my mother at age 9. My mother, in turn, died at at age 42 from a heart attack leaving three children from age 12-16. I knew nothing about APOE at that time but knew I had a strong genetic background I had to fight. My mother and my grandmother never got a chance to raise their children. This had a profound impact on my life and I made it my goal to live long enough to raise my children. I had 3 children and when I hit my 43rd birthday, we had a party. I was the first woman in my maternal side of the family to reach age 43. At age 48, my youngest son reached the age of 18 and graduated from HS. I had achieved my life goal. I didn't set another goal. Instead, I enjoyed the bonus time I was granted. Since then, my three children have graduated from college and now have master's degrees, they have all married wonderful people and I danced with my two sons at their weddings and had a wonderful time being the mother of the bride for my daughter. I have 5 grandchildren and my 6th due in August. I have a wonderful life. My mother and grandmother never held and rocked their grandbabies in their arms, I have and understand how blessed I am. I have experienced so much more than my mother and grandmother ever got the opportunity to experience.
I found out in Dec 2018 that I was an e3/e4. I suspect my mother and grandmother were e4/e4 but I will never know. I am 58, for me this news tells me I have to work a little harder on my health in the "bonus time" I have been granted. Medical science has advanced and it gives me an incredible advantage over my mother and grandmother.

You too have this advantage. Live for today and set the most important goals for you. Enjoy your beautiful children. Tomorrow is never promised to anyone and you need to choose what goals are most important to you and work towards those. Eat healthy, exercise, understand your risks and minimize those. I am a newbie in this arena and I am still studying mine and trying to make improvements.
e3/e4
No family history of AD, they drop dead of heart attacks in their early 40's!
Celiac and Hashimotos

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Re: Anxiety and APOE4

Postby slacker » Mon Feb 04, 2019 5:28 pm

JudyH wrote:Niki - I am e3/e4 , not e4/e4 but let me give you a different perspective.


Thank you Judy for sharing your beautiful story, and for being an inspiration for me!
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Re: Anxiety and APOE4

Postby NikiB » Mon Nov 30, 2020 12:47 pm

NF52 wrote:
NikiB wrote:... 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.

Checking back in - would love to reconnect. Feeling triggered, anxious and sad today.


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NF52
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Re: Anxiety and APOE4

Postby NF52 » Mon Nov 30, 2020 1:29 pm

NikiB wrote:Checking back in - would love to reconnect. Feeling triggered, anxious and sad today.
A big hug, Nikki. Something about grey November days (and frankly, the demands of holidays) that can make looking for sunny skies and rainbows really tough. I saw your earlier post and replied to it here: Anxiety.

If it's easier to share specific triggers in a Private Message, feel free to do that by clicking on the "contact" icon below my user name to the left of this post.

And Niki, be as kind and generous to yourself as you are to others. For me that means knowing that indulging in dark chocolate and a rom-com, or re-connecting on Zoom, email, text or phone to friends, extended family, or work colleagues may be exactly what I need in the moment. A great clinical psychologist I used to know, who worked with traumatized kids, said it helps to visualize yourself on the other side of painfully strong anxiety and sadness. (For example, visualize yourself when you can go out to a restaurant with friends, or if you got the results of a test that showed your cognitive skills as excellent.) Her second piece of advice was to use a ranking of 1-10 on how anxiety-provoking something was, with no numbers larger than 10 allowed. Then think back to other "10's" you have gotten through and what worked then, and try using those or other self-talk reassurances to bring the "10" down to something that is not nothing, but not overwhelming.

Although some people are very leery of medication, anti-anxiety medications have not to my knowledge been linked to increased risk of dementia, and may in some people be highly effective in avoiding increased stress-responses that may affect overall well-being.

Many of us on this site have been where you are and are sending good thoughts your way.
4/4 and still an optimist!


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