Anxious and fearful

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
chronophylos
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Anxious and fearful

Postby chronophylos » Wed Aug 26, 2020 1:28 pm

Hi everyone, I'm almost 44, and I have two defective alleles. I wish I'd never found out about it, though. I'm terrified and I can't find much relief. Anxiety and depression have gained a foothold on my life. I have tried counseling, but unfortunately it hasn't helped much. Sometimes I emerge out of my fearful obsession for a few weeks or a few months, during which I don't think much about what awaits me. But, inevitably, I come back to the research, to days wasted browsing through dozens of papers with nothing but obscenely disgusting odds against us 4/4 people and no hope in sight. And then, of course, I'd find a paper that correlates worrying too much with odds of developing Alzheimer's. Then my doctor would prescribe anti-anxiety medication, but what would you know, those are also correlated with increased odds of dementia, so I end up not taking them. When I feel a bit more positive, I try meditation, or exercise, or a slightly improved diet.

I'm a scientist, I work with my brain, and I often wonder how much time before it begins to rot in my skull. It may be already happening for all I know, there are plenty of studies showing accumulation of biomarkers in the brains of younger people with no symptoms. I'm also multilingual, and I wonder what it will be like to go from four languages to meaningless gibberish. I cannot know much about family history because my parents are 68 and all of my grandparents save one died of other causes before age 65. The one who made it to 81 had dementia by 77.

I'm not sure what I can get from this forum or how I can contribute, but I thought that I would introduce myself since I've been reading it a lot lately. I apologize for the darker tone of the message, but it reflects how I feel about this predicament most of the time.

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Re: Anxious and fearful

Postby Tincup » Wed Aug 26, 2020 1:55 pm

chronophylos wrote:Hi everyone, I'm almost 44, and I have two defective alleles. I wish I'd never found out about it, though. I'm terrified and I can't find much relief.

I'm not sure what I can get from this forum or how I can contribute, but I thought that I would introduce myself since I've been reading it a lot lately. I apologize for the darker tone of the message, but it reflects how I feel about this predicament most of the time.


Welcome chronophylos,

I'd like to convey optimism to you. I suggest that all the people they were studying in the papers you are reading were not doing the things we are doing here.

First, is our President, Julie G's, story. Julie's cognition was going badly in the toilet as she turned 50. Through her own resourcefulness she turned it around. Forming our non profit, in the mean time. She also now works with Dale Bredesen MD and they published a book on Aug 18th of this year. She tells her story in this 2015 presentation, following Bredesen's presentation.

Bredesen's first book.

Bredesen's 2nd paper.

Our Primer, written by a 4/4 doc.

I think this is a decent interview to understand Bredesen's approach as is this one.

Neither are new, but his point is this is a multifactorial illness and you need to address the issues that are impacting you, not just addressing it randomly or with a single agent.

My 4/4 wife and me as a 3/4 (at 65) with a mother who died with dementia are quite optimistic we will have long, cognitively healthy lives. There are many others here who share the same view.
Tincup
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Re: Anxious and fearful

Postby SusanJ » Wed Aug 26, 2020 2:21 pm

chronophylos wrote:I apologize for the darker tone of the message, but it reflects how I feel about this predicament most of the time.


No need to apologize. You are in the right place, because many of us felt exactly the same way when we first found out our status. My first words were, "no surprise, but that just sucks." It's all I could think about for several months.

All I had to do is to look at my Dad's dementia, and the others in his family who suffered the ill effects of Alzheimer's to conjure up what could happen to me.

I'll be honest that working with this group, understanding more about the science, piecing together all the genetic things that I could control (like MTHFR or VDR variants) and looking at the underlying metabolic issues my Dad had, well, they all helped me understand there were many things I could control. By changing my lifestyle, including the way I eat and what supplements I take, my overall health has improved.

Are things perfect? No, but I do know I'm on the right path.

Hang in there, and come back and check in from time-to-time. We're here to listen and lend a hand where needed.

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Re: Anxious and fearful

Postby NF52 » Wed Aug 26, 2020 3:10 pm

chronophylos wrote:Hi everyone, I'm almost 44, and I have two defective alleles. I wish I'd never found out about it, though. I'm terrified and I can't find much relief. Anxiety and depression have gained a foothold on my life....
I'm a scientist, I work with my brain, and I often wonder how much time before it begins to rot in my skull. It may be already happening for all I know, there are plenty of studies showing accumulation of biomarkers in the brains of younger people with no symptoms. I'm also multilingual, and I wonder what it will be like to go from four languages to meaningless gibberish. I cannot know much about family history because my parents are 68 and all of my grandparents save one died of other causes before age 65. The one who made it to 81 had dementia by 77.

I'm not sure what I can get from this forum or how I can contribute, but I thought that I would introduce myself since I've been reading it a lot lately. I apologize for the darker tone of the message, but it reflects how I feel about this predicament most of the time.
Welcome, chronophylos, from another person with two copies of ApoE4. You don't say how long ago you found out this news, but it sounds like it's been more than those "weeks or months" you mention. Taking the step of posting here is a deeply courageous move. That seems to me a sign that your brain wants a re-set to a different way of thinking about all of this.

I get that. I was in a dark place also when I found the news at age 62, and saw references to studies from 20 years before that predicted I would be diagnosed with Alzheimer's at age 68. And yet, here I am at age 68, participating as a reviewer of detailed research proposals on the links between traumatic brain injury and Alzheimer's, watching in-depth presentations from the recent virtual Alz. Association's International Conference. I know from reading and from sitting on advisory boards of the progress in ApoE4. I know that dementia prevention and risk reduction through lifestyle choices is real. I know that upcoming clinical drug trials are being targeted specifically for people with ApoE 4/4. I am still able to do all the things I did when I was 48 and 58, many of them actually better now since I've prioritized sleep, exercise, eating better and reading about Stoicism.

Like you, i needed to admit in my 40's that I couldn't be perfect at everything, and couldn't fix everything. I also realized that I needed medication for anxiety. I was able to get to the point of no longer having that anxiety, but I would take medication again if needed. Research suggests it is untreated depression and anxiety which is associated with the risk of cognitive decline, possibly through the effects on social isolation, lack of exercise or other downstream effects. You may want to find someone who is willing to look to some of the newer medications with fewer side effects, if you go that route. I also think cognitive behavioral therapy can be very helpful, especially for people who enjoy self-reflection.

Here's the words I would use to describe you: You have two excellent variations on ApoE4, which have been shown to be associated with higher education levels, higher verbal skills and higher executive functioning in young adulthood. You used that and superior intellect to gain high, protective levels of education. Your multilingual skills represent over-learned semantic and phonological skills which give you vast cognitive resources. You are a scientist, so you engage in complex problem-solving and frontal lobe executive skills every day, increasing your brain's network connectivity and priming your hippocampus for new learning. It is as irrelevant to your future that three of your grandparents died in their 60's and the last one died with an unspecified dementia at age 81 as it is to say that my grandmother died of a stroke at age 45 after having 11 children in 15 years, or that my father died at 67 of diabetes and cardiac arrest because no one in the 1980's knew that 20 years of poorly managed diabetes could cause massive silent coronary artery damage and aortic stenosis. We don't have to repeat the past.

A long-term study of the "oldest old" in Finland, found that people with ApoE4 were more likely to have amyloid and tau in their brains when they died (only about 1/3, of them) but no more likely than others to have a diagnosis of Alzheimer's. In other words, they died in old age with Alzheimer's pathology, but not from Alzheimer's disease. Prediction models for dementia and neuropathology in the oldest old: the Vantaa 85+ cohort study

Similarly, a large, well-designed meta-analysis of four longitudinal cohorts found that the risk for a diagnosis of Alzheimer's was very low before the age of 70 even in those with Apoe 4/4 and the risk of a diagnosis of EITHER Mild Cognitive Impairment or dementia by the age of 85 (the average life span for someone my age) was within a broad range of 30-55%. So with 2 fewer decades than you to make changes, I still have a 45-70% chance of not having the diagnosis of even a mild cognitive impairment during my life.

If you start looking at articles on Alzforum, a compendium of current research into Alzheimer's, you will quickly realize that the foundational research is progressing exponentially, and it's now accepted that probably 40% of dementia cases could be prevented with the kind of strategies recommended in the Primer. Here's a link to a post I made last week; the drug ALZ801 that I mentioned in the post has just gotten $47 million from the NIH to target a very specific, toxic form of beta amyloid (AB42) in those with ApoE 4/4 and early Alzheimer's. It's likely that if successful in the next few years it will quickly be extended to people with normal cognition who have that same elevated level of AB42 before they develop any damaging tau tangles or neuronal synapse loss 4 drugs which may get approval in 3-5 years

Life can get better; you can visualize yourself speaking in all of those 4 languages to those of us who have forgotten most of our HS or college French. C'est vrai! Bon chance, mon ami.
4/4 and still an optimist!

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Re: Anxious and fearful

Postby KendrahB » Wed Aug 26, 2020 3:26 pm

chronophylos wrote:I'm not sure what I can get from this forum or how I can contribute, but I thought that I would introduce myself since I've been reading it a lot lately. I apologize for the darker tone of the message, but it reflects how I feel about this predicament most of the time.


Chronophylos - welcome! You have definitely come to the right place. I hope the above three replies have already opened you up to some hope. Further hope can be found from Stavia’s story at the Primer.

I encourage you to use the search function on this site to find other stories of success, and check out other Our Stories as you feel ready.

Other housekeeping items - feel free to visit our Wiki for more information on navigating the site, and click here for “how to” guides on posting, private messaging, and quoting others so they are alerted to your messages. Make sure you are logged in when reading posts so you can see all links and images embedded within.

I hope you find these resources helpful, and don’t hesitate to reach out to any of us if you have technical, or personal, questions on your journey. While not ApoE4 myself, I have struggled with health issues in the recent past that caused a lot of anxiety and depression. You are not alone here, and there are answers for getting to a place of contentment, and living well!
Kendrah

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Re: Anxious and fearful

Postby floramaria » Wed Aug 26, 2020 5:59 pm

chronophylos wrote:Hi everyone, I'm almost 44, and I have two defective alleles. .....
When I feel a bit more positive, I try meditation, or exercise, or a slightly improved diet. ...
I'm not sure what I can get from this forum or how I can contribI thought that I would introduce myself since I've been reading it a lot lately.

Hi chronopylos, it is a measure of how much my opinion has changed as I have learned more about AD that when I read your post , my first thought was a somewhat defensive “ApoE4 is not a defective allele!” I don’t think of it as defective anymore, only mismatched with some elements of the modern world. In my experience, the more I have embraced the kind of changes described in the Primer and that you name above...improved diet, exercise, and meditation....the less fearful I have felt. Over time, the changes have accumulated, to the point that now I look at the statistics and figure that I am surely healthier than 80 or 90 % of the people who carry the ApoE4 allele, which I think is enough to put me outside high risk zone.
You are young and have time to slowly incorporate changes that will contribute to your lifelong cognitive health. These same changes support overall good health. And before the time that you might have begun to manifest symptoms of Alzheimer’s , there will almost certainly be other interventions. Before long, if you want, you”ll probably be able to choose to exchange your ApoE4 ‘s for ApoE2 alleles.
I predict you’ll still be fluent in 4 languages into y0ur 90’s. Or maybe 5 or 6 languages. Why stop at 4?
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
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Re: Anxious and fearful

Postby Catherinewl » Thu Aug 27, 2020 11:39 am

Hi there. 42 and 4/4 here too. I found a lifestyle medicine practitioner in my area that takes insurance. It’s been hard for me to on-ramp the changes recommended here, but I keep at it. I hope to have hope someday too. In the meantime, I understand. I have 3 kids, and I fast forward to what I’m going to miss all the time. I told my family it’s like finding out there’s a bomb under your house, and it will almost certainly detonate someday unless you constantly work to unearth and neutralize it (with no guarantee that work will be successful.) And some days you’re too tired or scared or worn down for the work.

Anyway. I see you. It’s okay to be scared.


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Re: Anxious and fearful

Postby RAJ64 » Thu Aug 27, 2020 1:48 pm

Catherinewl wrote:Hi there. 42 and 4/4 here too. I found a lifestyle medicine practitioner in my area that takes insurance. It’s been hard for me to on-ramp the changes recommended here, but I keep at it. I hope to have hope someday too. In the meantime, I understand. I have 3 kids, and I fast forward to what I’m going to miss all the time. I told my family it’s like finding out there’s a bomb under your house, and it will almost certainly detonate someday unless you constantly work to unearth and neutralize it (with no guarantee that work will be successful.) And some days you’re too tired or scared or worn down for the work. Anyway. I see you. It’s okay to be scared.


Hello Catherinewl, and welcome to the ApoE4.info Forum! My name is Rachel and I am a support intern here on the site. I wanted to reach out to you and thank you for your compassionate reply to Chronophylos.

I would like to suggest that today is definitely a hopeful day to be alive with ApoE4! We know now that our genes are not our destiny as once was thought. There is so much we can alter in our environment that can turn on and off genes to allow us to live healthier lives than even our recent ancestors of just 20 years ago were able to attain. We do not have to perform perfectly for the health benefits to be realized. Giving it our best as often as we can goes a long way to keeping the negative effects of any gene under control. None of us is perfect when it comes to making and sustaining healthy lifestyle changes but, the body is resilient allowing our imperfect progress to create better health in spite of ourselves. :)

I am glad to hear you have found a practitioner to help you implement lifestyle changes to support healthy aging. There is a lot of evidence to support the success of lifestyle changes to improve both cognitive function and physical aging. Many members here are ApoE4/4 and are living vibrant healthy lives in their 60s, 70s and 80s... and beyond. Knowing their ApoE4 status has been a blessing in disguise, allowing them the time to reverse course and create better health outcomes. We are living in a new era of personalized medicine, again, such a hopeful time to be alive - after working through the appropriate grief of finding out your ApoE4 status, of course.

Since you are new to ApoE4.info, I would like to share some links for getting the most out of the site:

You will see, if you haven't already, that the site is organized into Forums like this one and a Wiki. This link will help you get the most out of your time here. How to Get the Most out of the Site

As you may have already discovered, there is a wealth of information available here. This link will help you find information on topics of interest, when you have time to search. I know time must be a premium to you with 3 children. ;)
Searching the Site for Information

Using the quote feature is like "tagging" someone in your post. Here is a link to show you how to quote someone. Using the Quote Feature to Tag Members

One last tip is to be sure you log in so that any attachments on posts are visible. If you are not logged in the post will let you know you don't have permission to view attachments - logging in solves this technical issue.

Thank you again for sharing your compassion with our community. You are appreciated! Best to you as you step into brighter days.

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

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Re: Anxious and fearful

Postby Fiver » Sun Aug 30, 2020 4:10 pm

Hi Chronophylos, you and I have some things in common. Similar ages, occupations, risk factors, and worries. As for your feelings about your apoe4 genes, it is totally natural to feel this way. I felt the same. Many of us did, or still do. It really is a roller coaster of a journey. In terms of the science, there will be big advances in the coming decade. I get it - there are sooooo many papers that are fascinating but don't seem to move the ball towards a treatment or cure. There have been lots of disappointments. And without a reliable, easy to use diagnostic test it's very difficult to know if lifestyle changes are helping. But this is changing. Finally. And by the time you are 55 the landscape will be very different. Meanwhile we can do what we can. Consider NF52, who dove into the field and contributes as a peer reviewers, helping to connect funding with the best research projects. (And, as mentioned, her stoic learnings - which I also find helpful.) We don't have to be passive, just waiting for breakthroughs. We can contribute. I've found this to be the absolute best way to put the worries aside. As for the lifestyle changes that is a personal journey - but there are so many helpful guides here to make it a bit easier. Just remember, all evidence suggests that you don't have to make *all* of the changes and be perfect about them to lower your risk. By the way, you mentioned anti-anxiety medication making the risk worse.....I'm not convinced of this; I find that data to be a bit thin. But you can read the studies, of course, and decide. Exercise is a good anxiety reducer and part of most anti-AD programs. I guess I just wanted to say that the sting of "knowing" becomes less of a burden to bear over time. And I really do see real, practical progress coming.
Concerned, but hopeful. Introverted, but will talk about science.

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Re: Anxious and fearful

Postby JuttaH » Fri Sep 25, 2020 10:15 am

I feel you there. I have nothing to share but want to add to the vent.
I'm also really kind of resentful as I've come to realize I literally inherited the worst of both parents based on Promethease reports and process of elimination.
My mother doesn't have the Apoe 4, but the Apoe 3-- I got the Apoe 4 from my father. My father's side of the family was a complete train wreck of heart disease, cancer, blindness, senility. Even the women seemed to drop dead from heart attacks in their 40s. My mother's side had some early deaths, including severe lung problems and pancreatic cancer. Lucky me, I inherited her mutation related to lung disease and pancreatic cancer!
Not only did I seem to get every genetic mutation either one had, I didn't even get the convenient Y chromosome OR the nice colored eyes...
What also makes me fearful is that I KNOW I will have to keep working until my very last breath, as I don't have a high-income job nor do I have a safety net in terms of supportive family. I've definitely clung to less-than-ideal jobs to keep my medical benefits, as I already developed hypothyroidism by my 20s (THANKS DAD) and needed to get frequent lab tests and thyroid medications filled. God forbid I "lose it" before I am eligible for Medicare (if it even exists by that time) as I've seen some much older coworkers go through. I've seen quite a few older women end up being pushed out of their much needed jobs and/or fired for making mistakes that were probably related to early-onset Alzheimers.


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