33 year old 4/4 - big shock and struggling to process it

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Ajwilliams11
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33 year old 4/4 - big shock and struggling to process it

Postby Ajwilliams11 » Mon Apr 23, 2018 10:29 am

Hi all,

I am so glad this forum exists as I need to share this information with somebody.

I don't think I have a new story but found out a few weeks ago I am a 4/4 and I have been obsessively thinking about it ever since. Day and night. I sort of stumbled in to the results without really considering the impact the information would have!

I am struggling to see positivity in anything at the moment, I'm sure as time passes it will be easier to digest but I will never 'unknow' this information and as a result all of my hopes and dreams now seem futile.

I have read the primer and very grateful for the information, I

I also don't have a support network around me so this battle is taking place inside my head. I had managed to get myself to a positive outlook in my life before getting this result, now it seems like an impossible objective.

Finally, since the result I am hyper sensitive to my cognition, noticing every time I forget anything when speaking or every time I forget what I was doing.. Thinking these are my symptoms starting.

I know this is a negative post, I'm feeling very down about the whole thing and would appreciate any advice or support.

Anna
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Re: 33 year old 4/4 - big shock and struggling to process it

Postby Anna » Mon Apr 23, 2018 12:04 pm

Welcome Ajwilliams11. You have definitely come to the right place. And no worries about what you consider to be a "negative post." That's what we are here for. Many of us 4/4's were blindsided and completely devastated by the news. I was. I felt like I was grieving a death, except, like you, the battle was mostly a quiet one inside my own head -- possibly the most difficult thing I have ever done. You can do a search on Processing Promethease (my newcomer post and follow-up a year later) and see just how much I was "struggling to process it" and that I came out the other side with a new perspective. Many of us have found, that with time, we are grateful to know, and we spend less time dwelling on it and more time taking steps to prevent AD (and cardiovascular disease). Dale Bredesen's work and protocol brought me hope. (You can Google him to find some YouTube interviews; I think his book, The End of Alzheimer's, is a must.)

The isolating nature of this news (that you many not necessarily want to share with all your friends and family) makes this journey especially difficult. I don't have great advise around this one. But I do understand how hard this is.

Remember, ApoE, is a risk factor, not a death sentence. Lifestyle interventions (diet, exercise, avoiding toxins, and much more) are hugely impactful. Other genes play a role too. You are young, which gives you many years to take steps to mitigate the impact of ApoE4. And the research is exploding, so who knows what interventions will be available IF you need them a few decades from now.

Many of us are hypersensitive about our cognition too. But again, you are young; any cognitive imperfections are likely either in the normal range or are being caused by something else (like the stress or sleep loss from learning this result!).

Hang in there!
~Anna
4/4 but so much more

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby NF52 » Mon Apr 23, 2018 12:24 pm

Ajwilliams11 wrote:I don't think I have a new story but found out a few weeks ago I am a 4/4 and I have been obsessively thinking about it ever since. Day and night. I sort of stumbled in to the results without really considering the impact the information would have!

HI AJ,

Just joining this group and being brave enough to share your fear is the first step to being able to cope with news that most of us sort of stumbled into. And I'm pretty sure that most of us (me for sure) obsessively thought about it day and night for at least a few weeks.
So let me try to light a path through the darkness, and not just with b.s. poster sayings!
First, I'm going to label what you're experiencing right now in a way you might not think of: Acute Stress Disorder.

I actually studied this not that long ago with a professor who has devoted her life to studying trauma. What most people don't realize is that lots of things involving health and medicine and feeling acutely that your life is in danger cause one or more predictable reactions:
    The person can't stop thinking about the news and picturing worst case scenarios.
    The person worries that how she/he feels is "not normal" and "will never get better".
    The person feels an overwhelming sense of dread, and panic and inability to self-calm.
    Sleep is disrupted and often the person feels like he/she has tunnel vision and is not able to follow conversations and hear advice or information from others.
    The person may feel guilty that she/he somehow caused this or is making it worse or feel others should feel guilty for contributing to this problem.

This happens to people whose newborns are premature, to parents whose kids are in a car accident, to people who get a diagnosis of an unexpected health crisis. All of these reactions are perfectly normal and they are acute, meaning they get better gradually and eventually go away for almost all people. So many people will post messages to tell you that they, like you, hated this news and worried, but that it got better. They're not kidding, and you can tell yourself that you are like them and it will get better for you too.

Second important news: Nothing that you forget, and no lapse in your attention right now, at the age of 33, is due to ApoE 4/4. Zilch! It's due to what's happening in your amygdala right now, which is basically running an air raid siren of alarm in your brain, which is drowning out all the normal brain capacity to have sustained attention and focus, to remember what you are doing and going to do and why. I spent years working with kids (and some adults) with minor and not so minor brain injuries, and more than a few told me "I was in a fog for months and didn't even realize it." You haven't had a brain injury, but you've had an emotional shock and your brain is just saying "OK, I'm going on vacation from hard thinking for a while."

Third important news: You are 33, meaning you are 32 years away from the age at which the risk of Late Onset Alzheimer's Disease begins Right now, for people my age, which is twice yours (66!) that risk is only between 30% and maybe 60% up to the age of 85. And science is moving really fast to understand specifically us apoe 4/4, with clinical trials involving 1000's of people. It's seems likely that within 5-10 years we will have tools to first identify which people are at risk, what lifestyle factors are best to reduce that risk And we already know that EASY stuff, like this from our Wiki: Simple Preventive Steps

I have three kids ages 29 to 36 and they are all 3/4's and I don't worry that their "hopes and dreams are futile". You may not have a lot of support right now from family or friends to help you believe that about yourself, so if it helps to share more about that, this is a safe place to do so. You may also want to share any family history or personal experiences of knowing someone with dementia; what you heard or saw as a child is very different from knowledge and support for people today, in my view.

You can also ask for some online coaching from one of our amazing interns, most of who have direct experience with ApoE 4 in themselves or their families. Here's a link if you want to read about our coaches: An opportunity to work with a health coach And here's the form if you want to have a coach get in touch with you; the first session is free and the next five are practically free!
http://coachingcenter.functionalmedicinecoaching.org/intake-form/

Hugs from your virtual mom or aunt, or much older, still healthy friend!
4/4 and still an optimist!

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby Lucy5 » Mon Apr 23, 2018 12:56 pm

Hello AJwilliams11 and welcome to our community.

First, I want to say that you are not alone here! I am also a 4/4 and learned my status quite accidentally a few years ago when I was 59. It was devastating and I do remember completely obsessing about my situation, which I think is very typical and certainly understandable. There are many 4/4 members here who have similar stories to tell. But I can assure you, with updated information about the risks of this gene (not remotely as bad or hopeless as some of the so called "information" you may have found in your first internet searches!), as well as knowledge about what you can do to positively and significantly impact your health going forward, you absolutely will start to feel better. Honest. Most importantly, please keep in mind that the E4 allele is a risk factor for LATE onset Alzheimer's (after age 65, and likely years beyond that!). So you should have NO worries whatsoever about forgetting something...it's very normal for everyone and of course something that everyday stress may contribute to.

I'm glad to hear you've already read out site Primer, written by Stavia, also a 4/4 and a practicing physician. As you continue to explore our site, you may find our Wiki of interest (accessed along the top of this page). Our Search function is located by clicking on the magnifying glass icon along the upper right section of this page.

AJ (if I may call you that?), we have a very supportive, knowledgeable community here. Please don't hesitate to ask questions as they come up and feel free to share with us how you're doing. We've all been where you are right now and understand how you're feeling. It's why I think of this group as my extended E4 family, and I hope you will too.
warmly...Lucy

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby Ajwilliams11 » Mon Apr 23, 2018 1:35 pm

I can't put into words how grateful I am for your replies. I know I'm not a special case but hearing what you have to say to me directly really helps.

Timing is also a big factor in why this has hit me hard. My relationship has just ended, my mum is recovering from a stroke, my brother is in supported housing after a breakdown a few years ago and I really don't have anybody to open up to about it. Until now.

I'm sure my tone will become more positive as the weeks go by. In the meantime, my focus needs to be on my mindset to prevent things getting worse internally. NF52, I have never heard of acute stress disorder but your description is very accurate. I will try and look into this more although I am very wary of going off track with researching things at the moment and stumbling across yet more worry. I have already applied for the intern appointment and will be searching for the book tomorrow.

Once again, thanks for taking the time to reply, it means the world :)

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby Priya » Mon Apr 23, 2018 2:10 pm

Aj I am 36 and basically posted the same post as you today, it’s called 36 and terrified of 4x4. I would happily join your support network if you need someone. This has been the worst 48 hours I can remember happening in the past 10 years, I have felt terrified for 48 hours shraight but this board has really really helped.
4x4 and Hashi - Currently anxious but searching for calm

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby Cas » Mon Apr 23, 2018 2:58 pm

Hi AJ,

Thank you so much for your post,as the others have said above what you are experiencing is normal, especially as there are a lot of things going on for you at the minute already, without this news. Take your time processing it all and try to be kind to yourself and exercise a lot of self care - you deserve it right now.

It’s great that you have been reading the primer too as there is so much supportive guidance within that. Do you have a copy of Dr Breseden’s book? That would also be a great resource for you.

The network on this site is fantastic and there are so many people on here with great stories that will help to restore hope for you. One of the sayings I love is that our genes just load the gun, it’s our environment and lifestyle that pull the trigger (hopefully someone on here can tell me who that quote is from as I’m not sure where it originates!) so basically that puts the control back to us and shows we are not at the mercy of our genes nothing is set in stone for us! And as NF52 has commented there are health coaches on here too like myself who can support you in making the changes as and when you feel ready to.

Take care
Catherine
Functional Medicine Coaching Academy Student

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby Priya » Mon Apr 23, 2018 4:52 pm

NF52 wrote:

I actually studied this not that long ago with a professor who has devoted her life to studying trauma. What most people don't realize is that lots of things involving health and medicine and feeling acutely that your life is in danger cause one or more predictable reactions:
    The person can't stop thinking about the news and picturing worst case scenarios.
    The person worries that how she/he feels is "not normal" and "will never get better".
    The person feels an overwhelming sense of dread, and panic and inability to self-calm.
    Sleep is disrupted and often the person feels like he/she has tunnel vision and is not able to follow conversations and hear advice or information from others.
    The person may feel guilty that she/he somehow caused this or is making it worse or feel others should feel guilty for contributing to this problem.

This happens to people whose newborns are premature, to parents whose kids are in a car accident, to people who get a diagnosis of an unexpected health crisis. All of these reactions are perfectly normal and they are acute, meaning they get better gradually and eventually go away for almost all people. So many people will post messages to tell you that they, like you, hated this news and worried, but that it got better. They're not kidding, and you can tell yourself that you are like them and it will get better for you too.

Second important news: Nothing that you forget, and no lapse in your attention right now, at the age of 33, is due to ApoE 4/4. Zilch! It's due to what's happening in your amygdala right now, which is basically running an air raid siren of alarm in your brain, which is drowning out all the normal brain capacity to have sustained attention and focus, to remember what you are doing and going to do and why. I spent years working with kids (and some adults) with minor and not so minor brain injuries, and more than a few told me "I was in a fog for months and didn't even realize it." You haven't had a brain injury, but you've had an emotional shock and your brain is just saying "OK, I'm going on vacation from hard thinking for a while."

Hugs from your virtual mom or aunt, or much older, still healthy friend!



Amazing advice!
4x4 and Hashi - Currently anxious but searching for calm

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby McGido » Mon Apr 23, 2018 9:40 pm

Hey AJ!

I'm 31 with 4/4. My father also recently passed from complications with AD. Being through that, combined with the thought of that being my ultimate fate, provided some dark days. But those dark days were some of the most important.

Eventually, it became a catalyst for a healthier lifestyle and became more of an inspiration to ensure I live each day as best I can. I actually started looking at it in a positive light.. because it's put my health and well being at the forefront of my life, where before it was well down the totem poll.

As you can see by NF52's reply, this community is an amazing resource!

It's okay to feel what your feeling currently, it's natural and somewhat necessary! We all have to allow ourselves to feel vulnerable and discovering a 4/4 status does just that. Just know, it gets much better :D

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Re: 33 year old 4/4 - big shock and struggling to process it

Postby Ajwilliams11 » Tue Apr 24, 2018 3:26 am

Cas wrote:Hi AJ,

Thank you so much for your post,as the others have said above what you are experiencing is normal, especially as there are a lot of things going on for you at the minute already, without this news. Take your time processing it all and try to be kind to yourself and exercise a lot of self care - you deserve it right now.

It’s great that you have been reading the primer too as there is so much supportive guidance within that. Do you have a copy of Dr Breseden’s book? That would also be a great resource for you.

The network on this site is fantastic and there are so many people on here with great stories that will help to restore hope for you. One of the sayings I love is that our genes just load the gun, it’s our environment and lifestyle that pull the trigger (hopefully someone on here can tell me who that quote is from as I’m not sure where it originates!) so basically that puts the control back to us and shows we are not at the mercy of our genes nothing is set in stone for us! And as NF52 has commented there are health coaches on here too like myself who can support you in making the changes as and when you feel ready to.

Take care
Catherine


Hi Cas,

Thanks for the message. I have applied for an intern to contact me but not heard anything as yet. I would be very interested to discuss the next step with yourself if possible?

Thanks


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