Saying hello

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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hendeja
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Saying hello

Post by hendeja »

Hello fellow members of the e4 club. I learned yesterday that I am e4/e4, which is rotten news as I'm 66 and I recall my mother showed first signs of AD around this age. Anyway , I now know that I'm part of a small 2-3% of the population who hit the e4 jackpot, and that it means I have a 5x average chance of getting AD before 85, and moreover likely to get it earlier than our singleton e4 brothers and sisters.

I was wondering today whether there might, somewhere, be a private club of e4-squared members where we could share gallows humour about our prospects of sinking into the grey fog - which is how I found your site. But that sort of remark may be against the rules and philosophy of this site so feel free to kick me off (or join me, if of similar disposition).
Knowing my status can be empowering too of course - a prompt to put a few some plans in place, think about advance directives, take up more dangerous sports etc. But I'd still rather not. Too bad.
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CarrieS
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Re: Saying hello

Post by CarrieS »

Good Morning hendeja! Sending you a warm welcome to the community and forums. As a fellow e4/4 (I'm 58) with a familial history of AD, I agree that it's rotten news BUT I also agree that it's powerful to know and even more powerful to have this community of knowledge to draw from and find support in. A sense of humor is a great asset but I do not know of a specific "club" to share "gallows humor" in. This would be a good subject to search for within the forums to see if someone has started a thread on using humor to help them cope. A valuable resource for navigating around can be found here. You will find tips on posting, responding, searching topics, etc. Good Stuff! Again, Welcome. I look forward to your participation and contributions.
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mike
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Re: Saying hello

Post by mike »

Hi, I'm also a 4/4. Turning 59 next week. My dad just died of AD last month. Yes, it sucks. Yes, makes sense to make some plans if the worst were to happen. But genes are only part of the picture. At worst, half of 4/4s get AD by 85, but even that says you have 50% chance of not getting it. And these are past statistics. We know much more now. Lifestyle changes can better your odds considerably.
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hendeja
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Re: Saying hello

Post by hendeja »

Dear Carrie, thanks for the welcome and the tips. Sure I'll be back here before long sharing stories...

And Hi to you too Mike - I'd like to think that lifestyle changes would change our odds; sure they may do a bit, but sadly dwarfed by the impact of our genetics, and in my case of being female - seems that the e4 gene has a bigger effect on women, blast it!
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Re: Saying hello

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hendeja wrote:Dear Carrie, thanks for the welcome and the tips. Sure I'll be back here before long sharing stories...

And Hi to you too Mike - I'd like to think that lifestyle changes would change our odds; sure they may do a bit, but sadly dwarfed by the impact of our genetics, and in my case of being female - seems that the e4 gene has a bigger effect on women, blast it!
yes, but now they probably know why - women create more Tau than men, regardless of the amount of AB plaque. This will likely end up being key. Regardless, it looks like ApoE4 is involved at the end of the cascade of events. If you can keep proper nutrition to the brain and do what you can to keep the blood brain barrier intact, or work to heal it, you can limit the need for activation of ApoE4. Lifestyle will turn out to be HUGE!

Let me edit this to say that I also just found where ApoE4 was less effective at glucose uptake and metabolism, but better at ketone uptake and metabolism - so it is not just the end of the cascade, but also at the beginning, which makes it even more important to get to a keto diet. Here is a link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4937039/
Last edited by mike on Fri Feb 22, 2019 4:34 pm, edited 2 times in total.
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hendeja
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Re: Saying hello

Post by hendeja »

Thanks Mike for the information on Tau production - the sex difference is news to me and very interesting. Do you have any references on that I could look up?
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Re: Saying hello

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Sonoma Mike
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PeterM
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Re: Saying hello

Post by PeterM »

This more recent study from 2017 might add some clarity to the male vs female Alzheimer’s risk.

https://www.sciencedaily.com/releases/2 ... 124531.htm
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Re: Saying hello

Post by mike »

That is a big data study without saying why. Here is a more recent article discussing Tau and sex.

https://www.alzforum.org/news/research- ... 4-carriers
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Re: Saying hello

Post by Gillyp »

A warm welcome to the community, hendeja. What a great idea to start a gallows humor group. Humor and those special connections we make always help us in so many ways. I'd like to recognize the courage you showed in being vulnerable enough to share your story and to explain how you are feeling about your news. It does suck to find out that you are a e4/e4 but knowing that gives you power and control over things. Life style choices can have a big impact on whether genes express or not. There is so much information on the site that you may find useful. You might want to start with the Primer (viewtopic.php?f=33&t=1418) and read what other people are doing and how it is helping them. You may also want to think about working with a health coach who would be able to support and guide you as you start out on this journey. There are a number of coaches listed on the site if you think that may be helpful. Once again, welcome to the community hendeja.
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