New 4/4 here - no family history

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
allisong
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New 4/4 here - no family history

Postby allisong » Sun Jul 07, 2019 9:15 am

Hello all! I'm Allie, 30 years old, married 8 months and hoping to start a family soon. This information has thrown me for a loop and made me question if it is responsible for me to have biological children knowing that I'd pass on at least one copy. I should add that I deal with pretty significant anxiety and OCD daily so that is probably partially at play here. My husband is not concerned and doesn't even think we need to meet with a genetic counselor - I can't tell whether my own issues are playing into my extreme emotions over this news. I don't have any family history of AD. Is this unusual? Sorry for the rambling post! Happy to have found this community and interested to learn all I can from you guys!

Allie

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TheresaB
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Re: New 4/4 here - no family history

Postby TheresaB » Sun Jul 07, 2019 11:14 am

Welcome Allison.

I'm a 4/4, my parents were obviously 4 carriers. I’d say it’s not irresponsible to have children, many 4’s live healthy, full cognition lives. Having one or two 4s doesn’t mean one is destined to get Alzheimer’s or cardiovascular disease. What’s awesome is, with this knowledge you have an opportunity to raise really healthy children. Just be mindful of setting good healthy habits for your children with emphasis on keeping them insulin sensitive, staying away from fast foods and vegetable oils, keeping active, staying away from bad light/too much screen time while getting real sun exposure, and practice good sleep habits. Also, always make sure they wear a helmet when riding a bike or similar activities and strongly insist they stay away from activities where head trauma is common.

Dr Bredesen, who has researched neurodegeneration for decades and is the author of The End of Alzheimer’s has said repeatedly, Alzheimer’s should be a rare disease. What he means is, if we all would just exercise certain lifestyle/diet practices, Alzheimer’s would be rare. Remember, for the vast majority (something like 96-98%, I forget the exact statistic) of humanity, APOEe4 was the only APOE allele that humans held, and we thrived! But there are so many lifestyle and dietary practices that are “new” in modern society, that it seems to really be stressing our genes, all genotypes, but particularly APOEe4s.

So much is being learned everyday, I think your children will have an excellent chance of never getting Alzheimer’s if you/they’re mindful about lifestyle choices. I don’t even think you’d have to be particularly radical as a parent. I ate ice-cream,brownies, twinkies, etc as a kid, but I don’t think I ate as much sugar as kids today do. My mom wasn't a particularly good cook, we ate a lot of frozen/canned foods so my diet as a child was FAR from pristine, but it was also at a time where additives, preservatives, hormones, and all those other foreign things weren't added to foods as much. I also spent a lot of time outside playing, went to bed at the same time at night, and as an adult kept active and ate okay such that I didn’t seem to damage myself.

I’m almost 60 now, don’t seem to have any cognitive issues, and am grateful I learned my APOE status, because for the past few years I’ve been extra diligent with food choices and lifestyle practices, hoping the “sins of my past” don’t catch up to me. But overall my biomarkers are good now, so I’m optimistic for my future. I’ve often said, I’d rather be an insulin sensitive 4/4 than a non-carrier with insulin resistance.
-Theresa
ApoE 4/4

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Re: New 4/4 here - no family history

Postby NF52 » Sun Jul 07, 2019 12:47 pm

allisong wrote:Hello all! I'm Allie, 30 years old, married 8 months and hoping to start a family soon. This information has thrown me for a loop and made me question if it is responsible for me to have biological children knowing that I'd pass on at least one copy. I should add that I deal with pretty significant anxiety and OCD daily so that is probably partially at play here. My husband is not concerned and doesn't even think we need to meet with a genetic counselor - I can't tell whether my own issues are playing into my extreme emotions over this news. I don't have any family history of AD. Is this unusual? Sorry for the rambling post! Happy to have found this community and interested to learn all I can from you guys!
Allie
Welcome, Allie!
As Theresa said, I think most 4/4s are glad that our parents were brave enough to have kids! My own parents each lost a parent while young--one to stomach cancer, the other to a stroke. They lived through the Depression and WWII and in my dad's case, survived dangerous runs on the North Atlantic. They started having kids around the same time that "drop and cover" drills for nuclear bomb attacks started in schools. And yet they chose to have 4 kids, and none of us has mild cognitive impairment or Alzheimer's at ages 66-70, or heart disease or any cancer more serious than skin cancer from our Scots/English skin. My three adult children, all in their 30's, are doing just fine with ApoE 3/4 in challenging careers and my two grandchildren (who may have inherited a 4) also are great examples of why people have kids.

Here's what my parents' generation (and maybe your grandparents) didn't have that my generation (I'm 67) has learned as adults and your generation grew up knowing: Awareness and tools to prevent, diagnose early, treat and in many cases reverse diabetes, high blood pressure and cardio-vascular disease, sleep apnea, smoking-related disease, air and water pollution, and sedentary lifestyle-related illness. Many also didn't have opportunities for continued education and challenging, fulfilling occupations.

I know that my own children have lived far healthier lives than I did in my first 30 years (think bologna and Velveeta cheese sandwiches as a staple in the 1950's) so their risks and yours should prove to be far lower than mine--and at 67 with a healthy brain, I think I have a good likelihood of turning 80 with that same healthy brain!

The fact that there is no history of AD in your family suggests that you also inherited strong protective factors--which is why scientists are now studying "resistance" to neuropathology (i.e. never having it occur) and "resilience" (having amyloid plaques or tau tangles without showing corresponding cognitive impairment) using stem cells drawn from healthy ApoE 4/4s in their 70's and 80's. I got to meet one of these scientists last year. He's in his early 40's and got into the field because 3 grandparents died with dementia. He now uses machine learning to test 1000's of substances against stem cells of healthy and unhealthy brains, and expects that within 10 years we will have a range of interventions (lifestyle, gene therapy, preventative medications, etc.) based on highly personalized risk assessments. So if someone with 3 grandparents with dementia is hopeful, I think you can be also!!

I would strongly encourage you to avoid suspect sources of information on your own risk--lots of those use articles written 20+ years ago based on small samples of people who showed up at Alzheimer's clinics. Here's a quote from a 2017 meta-analysis of four large population-based cohorts on the statistical (not personalized) risk of someone MY AGE (60-75) to have a diagnosis of either Mild Cognitive Impairment or Alzheimer's by the age of 85:
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.

APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

If you want to read some great strategies endorsed by a healthy, smart, active, world-traveling doctor who is in her late 50's and has ApoE 4/4, browse our Primer.

And to find out how to quote people so they see your response, how to search, how to find unread posts and how to "subscribe" to posts to get updates on a topic or thread, check out "How-To" Get the most out of the ApoE4.info website
.

Hugs from a genetic 4/4 "mom" who wants you to life life large!
4/4 and still an optimist!

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Re: New 4/4 here - no family history

Postby Orangecrush » Mon Jul 08, 2019 9:43 am

I think you're still pretty young to say you have no family history of AD. Your parents are probably in their what, 50's or 60's? What about your grandparents, are they still alive? If so, have they reached their mid to late 80's? Or, if they died already, did they live at least til their late 80's? Because only then can you really say you have no family history of AD. People can carry the apoe4 gene and just die sooner of something else, before they show symptoms of the disease.

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Re: New 4/4 here - no family history

Postby SamNZ » Mon Jul 08, 2019 6:10 pm

Hi allisong,
How wonderful that you show such a level of kindness to care about this topic, and how you are aware that you may have an overuse of the "self regulation" character strength. As mentioned above, you are genetically more likely to get AD than an E3/3 or E2/2 but it is lifestyle choices that switch on those genes!!! Your OCD tendancies could be a great help to you in starting to implement the lifestyle changes required to give you the best chance to delay the onset of the disease, but for all your present and future families sakes - maybe implement them one at a time. With your anxiety, if it doesn't horrify you too much, maybe looking into stress management first would be a good place to start, some mindfulness and meditation (love the headspace, calm, meditation studio apps and Stress Less, Accomplish more is a great book to explain the difference and benefits). If that does not work, look through the primer and just pick one to start on. Hope this helps, good luck with making your big life decisions. SamNZ
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Re: New 4/4 here - no family history

Postby mike » Tue Jul 09, 2019 1:02 pm

allisong wrote:Hello all! I'm Allie, 30 years old, married 8 months and hoping to start a family soon. This information has thrown me for a loop and made me question if it is responsible for me to have biological children knowing that I'd pass on at least one copy.
Allie, you can only pass on one copy. If your husband is 3/3 then your children will all be 3/4. 3/4's with proper lifestyle should most likely be fine. Proper diet with no added sugar/fructose and exercise and enough sleep.
Sonoma Mike
4/4


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