New 4/4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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goldenlvr
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New 4/4

Post by goldenlvr »

Hello all! I have been overusing this site and have sound so much useful information. I found out by accident I was 4/4 when I submitted my 23andme data to promethease. I thought it would be interesting, not devastating. I've known for 3 years now and have been tweaking my diet and exercise.

I recently read Bredesen's book and am finally hopeful and encouraged that I do have the ability to control my fate. I found a functional medical practitioner who is trained in the Bredesen protocol in Colorado where we plan to move within the next year. I have had my initial appointment (online video) and he has sent my blood test requests to my existing internist.

My older sister is in the end stages of AD. She is 76 and I believe her symptoms became obvious in her mid-sixties. I will be 62 on Monday and although I am hypersensitive about any lapse of memory, I really don't believe I am symptomatic at this point. I did "pass" the initial cognitive test during my appointment. :)

I am sure I will have lots of questions. Thank you all for being here and sharing your stories.
rianlees
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Re: New 4/4

Post by rianlees »

Hello goldenlvr,

Firstly a very warm welcome to the community. I have no doubt you will find the site an ongoing source of information, inspiration and support. You have mentioned that you've looked around the site. I just want to make sure you know whereto find the primer; a very informative read written by a medical practitioner.
Here is the link viewtopic.php?f=33&t=1418

Also, up in the top right hand corner, beside your user name you'll see 3 dots, which is a drop down menu and a great way to navigate around the site.

I am so sorry to hear about your shock on finding out your Apo status, I know many others have shared similar stories and will very much empathise with you. On the other hand, I am thrilled to hear how you have put this information to good use with diet and exercise adjustments over the years, presumably with good affect?

It's fantastic that you've found Bredesden's book inspiring and hopeful, like lots of other people and I look forward to hearing about your progress from here on.
Many of our members utilise Dr Bredesden's protocol so do reach out with questions, comments or concerns as they arise as our community is a very rich resource of information and support.

Good luck with the move to Colorado, hopefully a rich and rewarding stage of your journey.
Until next time...

Rian
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slacker
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Re: New 4/4

Post by slacker »

Welcome Golden;

Two helpful functions accessed through the 3 vertical dots that Rian mentioned are now available with one less "click". In the same area of the website (right upper corner), you can check out the Wiki directly. The link is inbetween the words "Forums" and "About Us". To search the website, you can use the magnifying glass icon.

We look forward to learning more about you and working together.
Slacker
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NF52
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Re: New 4/4

Post by NF52 »

goldenlvr wrote: I will be 62 on Monday and although I am hypersensitive about any lapse of memory, I really don't believe I am symptomatic at this point. I did "pass" the initial cognitive test during my appointment. :)
Happy Birthday (almost), goldenlvr!!

As someone who just turned 66, and who found out my 4/4 status 2 months before turning 62, I can very much identify with the "who cares about that Norwegian ancestor?!" feeling in the pit of your stomach.
Having passed the cognitive assessment, and having no "subjective memory complaint" (the term researchers use), you have reason to celebrate. Researchers and clinicians are making great strides in understanding the long, usually slow progression to mild cognitive impairment and dementia from lots of population-based studies of large cohorts of people, and more targeted studies following people at "increased risk" due to either Apoe 4, family history or subjective memory complaints. Understanding both the many paths to progression and the basic research on the brain will allow many interventions to change the impact of those "devastating" reports. It's clear that not everyone at risk of AD goes to to develop it. Even among people with 4/4, the latest meta-analysis of 4 large cohorts suggest a wide band of variability, with 40%-70% NOT developing either MCI or AD by the age of 85.
It's possible your poor sister had risk factors either genetically or environmentally that you do not have. As a quick example, my grandfather and his only sibling, a brother, both died of stomach cancer at the age of 48. Pretty scary sounding! Yet none of their descendants has had stomach cancer, or any other kind of early cancer. My assumption, from reading accounts of the rapid decrease in the prevalence of stomach cancer over that last 70 years, is that their cancer might have been "nudged" by genes, but was unleashed by unregulated amounts of toxins in smoked meats in the early 20th century, and when that "risk factor" disappeared, their offspring became healthier. Your decisions around diet and exercise (which may be a very important protective factor) are wonderful! And I hope moving to Colorado provides you with decades of happy health!
4/4 and still an optimist!
Anna
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Re: New 4/4

Post by Anna »

Hi goldenlvr, and happy birthday! I am glad you finally feel encouraged that you can impact your fate.
goldenlvr wrote:I found out by accident I was 4/4 when I submitted my 23andme data to promethease. I thought it would be interesting, not devastating.
Me too :(
NF52 wrote:Even among people with 4/4, the latest meta-analysis of 4 large cohorts suggest a wide band of variability, with 40%-70% NOT developing either MCI or AD by the age of 85.
I wish Promethease would update their statistics to these far more encouraging numbers. I suspect that many of us found this experience to be far more devastating than it needed to be.
~Anna
4/4 but so much more
NF52
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Re: New 4/4

Post by NF52 »

Here's the article that my statistic came from, and two interesting quotes. Having seen repeated articles with the phrase "9-12X the risk of dementia for Apoe 4/4" I especially like their conclusion that being a 4/4 may confer about 3 times the risk of the "general population". I can live (i hope happily) with that.

APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
http://journals.plos.org/plosmedicine/a ... ed.1002254
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty. The regression models are insufficiently precise for “personalized medicine” incidence estimates based on sex, education, or other factors, but they do allow for qualitative adjustments to overall stratified risk estimates.

On the basis of our regression findings (S1 Appendix Table E), for APOE-e4/e4 homozygotes, the adjusted relative risk for MCI/dementia is 2.7 for NACC, 3.4 for the Framingham Heart Study, and 2.4 for the Rotterdam Study, so disclosing a relative risk of about 3-fold compared to the general population would make sense.
[Emphasis added]
4/4 and still an optimist!
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