How do you not define yourself by your APOE4 status?

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HopefullyNotDoomed
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How do you not define yourself by your APOE4 status?

Post by HopefullyNotDoomed »

I have had chronic insomnia for many years, sometimes it has been worse, other times, better but I remember a phase for about 2 years when it was really, really bad. I began to think of myself as insomnia, not a person who suffers from it because of how relentless and constant it was. Now I find myself teetering on the edge of an identity crisis of genetic making; increasingly, I don't feel like I am just a person but I am an APOE4 person. The fact that I carry a copy of that gene changes everything and all the research and obsessive interest I have taken in my condition only fuels it. It seems like folly to ignore it; it is a very real risk. On the other hand I am well familiar with the the descend into the depths of obsessive madness and fixation where everything is defined by a single condition you have or suffer from. I am struggling at the moment; on the one hand I do not wish to think about APOE4 and Alzheimers day and night, but on the other I do not wish to live in blithe ignorance and indifference. I do not think there is a ready solution but I am wondering if anyone else here has gone through this, allowed him/herself to be consumed by the unfortunate knowledge of having lost the genetic lottery? Perhaps it is similar to the phases of acceptance when one is terminally ill. There is a period of rage and then as the fires of anger die you begin to accept but for the life of me I cannot find a happy medium, somewhere where I do not ignore the unfortunate genetic reality and somewhere where I am not ground to dust by rumination. Again, I don't expect solutions at all, rather I would appreciate any sort of commentary of commiseration and relatability. Best.
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floramaria
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Re: How do you not define yourself by your APOE4 status?

Post by floramaria »

HopefullyNotDoomed wrote:I have had chronic insomnia for many years, sometimes it has been worse, other times, better but I remember a phase for about 2 years when it was really, really bad. I began to think of myself as insomnia, not a person who suffers from it because of how relentless and constant it was. Now I find myself teetering on the edge of an identity crisis of genetic making; increasingly, I don't feel like I am just a person but I am an APOE4 person. The fact that I carry a copy of that gene changes everything and all the research and obsessive interest I have taken in my condition only fuels it. It seems like folly to ignore it; it is a very real risk. On the other hand I am well familiar with the the descend into the depths of obsessive madness and fixation where everything is defined by a single condition you have or suffer from. I am struggling at the moment; on the one hand I do not wish to think about APOE4 and Alzheimers day and night, but on the other I do not wish to live in blithe ignorance and indifference. I do not think there is a ready solution but I am wondering if anyone else here has gone through this, allowed him/herself to be consumed by the unfortunate knowledge of having lost the genetic lottery? Perhaps it is similar to the phases of acceptance when one is terminally ill. There is a period of rage and then as the fires of anger die you begin to accept but for the life of me I cannot find a happy medium, somewhere where I do not ignore the unfortunate genetic reality and somewhere where I am not ground to dust by rumination. Again, I don't expect solutions at all, rather I would appreciate any sort of commentary of commiseration and relatability. Best.
Hi HopefullyNotDoomed, Many people here have gone through what you describe, a period of being defined by the knowledge that one carries the ApoE4 allele. That didn’t happen to me when I learned about my ApoE4 allele because I had already been there in a defined-by-disease state with another condition. At one point when I began having tremors, my MD told me that I had Parkinson’s. Disease. The more I read, the more desperate I became because everything I read was 100% negative; I had “ an incurable progressive degenerative disease”. I could not find one ray of hope. That was the darkest period in my life, and I was , indeed, defined by Parkinson’s , or at least by my overwhelming fear of Parkinson’s and of what my future might look like. Though I searched the internet as if my life depended on it, trying to turn up any tiny shred of hope, the more I read, the bleaker things got.
At one point , a friend suggested an internet search that yielded an entirely different world view. It was as if a curtain parted: Hidden in parts of the internet I hadn’t discovered with all my searching, there were people who had recovered. That was the hope I needed.
One of the tools that really helped me get through that difficult time was a CD set I bought at that time : Meditations to Change Your Brain. Besides the Meditations, there were presentations on neuroplasticity and using your thoughts to create neural pathways that would actually change your brain structure. That was a long time ago, and by now there are abundant tools out available.

From my point of view, you are already on the right track, HopefullyNotDoomed. You already have hope, right there in your user name. And you will find a lot of hope here on the ApoE4.Info website, because there are many ApoE4+ individuals here who can provide you with the positive and hope-supporting example of people who share your genetics and are still cognitively strong as they age. You already recognize the trap that fixation can be; One way or another, I hope you find your way to free yourself from that. There are many tools out there. Hopefully you’ll find something that works for you to move you out of obsession and let you channel your energies towards growing and maintaining health instead.

Sending you a virtual hug and warm best wishes. I understand your struggle and wish you well with all my heart.
Floramaria
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
HopefullyNotDoomed
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Re: How do you not define yourself by your APOE4 status?

Post by HopefullyNotDoomed »

Thanks for the response. I was never good at meditation but I suppose I will have to work on it. I tend to get distracted rather easily. Thanks again
BrianR
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Re: How do you not define yourself by your APOE4 status?

Post by BrianR »

Floramaria said everything so well, but if you want an easy sound bite to remember:

Genes are not destiny

APOE4 does increase your risk for dementia, but you can find many life changes on this site which will not only lower your risk of dementia, but also lower the risk of many other poor health outcomes.
tesslo
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Re: How do you not define yourself by your APOE4 status?

Post by tesslo »

what Brian said and sometimes I forget...like when deciding to get a shot with a metal adjuvant and that I also have the MTHFR mutation, so for me it was a good process
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TheresaB
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Re: How do you not define yourself by your APOE4 status?

Post by TheresaB »

HopefullyNotDoomed wrote:increasingly, I don't feel like I am just a person but I am an APOE4 person.
HopefullyNotDoomed wrote:I do not think there is a ready solution but I am wondering if anyone else here has gone through this, allowed him/herself to be consumed by the unfortunate knowledge of having lost the genetic lottery? Perhaps it is similar to the phases of acceptance when one is terminally ill. There is a period of rage and then as the fires of anger die you begin to accept but for the life of me I cannot find a happy medium, somewhere where I do not ignore the unfortunate genetic reality and somewhere where I am not ground to dust by rumination.
I am so sorry you feel this way. I wish I could offer you words of advice of how I went through the same feelings and worked through it, but I can't.

When I learned of my status my general thought was, "Well that sucks" but I didn't go through deep depression and rumination. My then partner (also ApoEε4), now husband, and I sought out what we could do. We educated ourselves, started following Dr Bredesen, found ourselves a good functional doctor, changed many lifestyle practices, and continue to adjust and tweak to this day. This website and the ApoE4.info organization was a saving grace.

Yes, being ApoEε4 positive is an identity that I carry that with me every single day. It’s my strength. It’s my motivation to make good lifestyle choices. I've written about it in Christmas letters, because it's a happy story - there are things that can be done!

It's just genetics. How genes are expressed depend heavily on lifestyle influencers.

I am eternally grateful that I live in an era where we know much about this allele that I feel my health is in my hands. I’m not blind to the issues my genetics predisposes me. But I have choices, and I find that empowering, I’m not inevitably doomed. I'm also not perfect, when I make a mistake, I try not to be critical of myself I just get back to trying to do the best I can.

I’m grateful I learned my status years ago and was able to nip negative health patterns in the bud before, hopefully, permanent damage occurred.

Genes are not destiny, especially ApoEε4. There are 4/4s who live healthy, long, mentally clear lives. Alzheimer’s is not determined by APOE status, we’re just at higher risk. Dr Dale Bredesen has said Alzheimer’s should be a rare disease. He means that for all everyone, not once has he said except for ApoEε4s. I've often said I'd rather be an insulin sensitive 4/4 than an insulin resistant 3/3.

There are many influencers that tip the scale towards Alzheimer’s and everyone has control over most of those influencers. Yes, that's a lot of spinning plates that can be overwhelming at first, but it gets easier with time. Yes, as 4s we cannot afford a laissez faire attitude, we must have focus and intention. It takes dedication, but it’s doable.

I guess I don't feel bad because I'm doing something about it. If I go down, I'm going down kicking and screaming.
-Theresa
ApoE 4/4
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