New (double E4) and research question about family history

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Saskia
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Re: New (double E4) and research question about family history

Postby Saskia » Tue Oct 08, 2019 2:51 am

mike wrote: how about added sugars and high fructose corn syrup? While I believe low carb is important, I think sugar and fructose will turn out to be the worse problem.


Agree on sugar being far more important than other carbs especially if you don't have confirmed insulin resistance.

Until his early 40s my dad was a patissier specializing in chocolate breads, sugar roses and marzipan figurines :lol: after which he switched to being a chef in a care home. He has always loved and eaten sweet foods, including at breakfast but he simply doesn't eat much overall. He barely has any fat on his body. It's not a decision... just a habit. My mother however is an alcoholic (drinks up to two bottles of wine a day in bad times and because of this she is also less slim than she used to be) so she's ruining every chance she has - but so far at 73 even she has zero cognitive decline. My dad has no education. My mother does, and keeps her brain active when sober (which would be funny if it weren't sad ;) )

I'm awaiting my parents' APOE data (they agreed to test) and assume they're both heterozygous or we would almost need to have AD in the family. I will update within a couple of weeks when I have the results.

Maybe it's luck, maybe it's the life-long lean bodies and exercise, maybe it's some compensating genetic factor... quite possibly a combination.
45 years old, E4/E4 and strangely no AD in (large) family. Mother (73 yo) E4/E4, father (87 yo) E4/E3, both symptom free. Recently started 16h fasts, taking resveratrol/B12/curcumin/krill oil/folic acid. Working on minimizing sugar & refined carbs

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Re: New (double E4) and research question about family history

Postby lindaelane » Wed Oct 09, 2019 11:50 am

Hello! I looked at (but did not read all of) the study you linked. Very interesting! The otherwise excellent table did not differentiate for two copies or one copy of ApoE4. Here is the thing....you have two copies of ApoE4 because one came from Mom and one from Dad. Both of them, in the most likely scenario, had one copy and so much decreased chances. I think you should continue to follow protocols to prevent Alzheimer's (such as Dr. Bredesen's) with determination, particularly due to your increased risk with two copies. Perhaps, in the text I did not completely go through, it discussed those with two copies of ApoE4 and how their numbers differed from those with one copy. That would be very important. It may or may not give much of an indication of your likelihood of reduced risk based on no family history despite two copies of ApoE4 compared with someone of the same genotype who has family history. Wishing you the best!

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Saskia
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Re: New (double E4) and research question about family history

Postby Saskia » Tue Oct 15, 2019 5:54 am

Thank you Linda! I now have my dad's results, unfortunately through MyHeritage's new format which cannot be uploaded to Promethease, but from the description they gave in the health reports it looks like he has one E4 only. Good for him! Still awaiting my mother's results but expecting the same. Indeed, I'm sticking to the bits of Bredesen I've already adopted (16h fast, low carb, certain supplements) and will slowly add to it as my new habits become second nature. I've used an intranasal steroid since age 14 or 16 and it turns out this reaches the brain more easily than oral steroids so I may have unknowingly prevented inflammation through my prescription allergy nose sprays.
45 years old, E4/E4 and strangely no AD in (large) family. Mother (73 yo) E4/E4, father (87 yo) E4/E3, both symptom free. Recently started 16h fasts, taking resveratrol/B12/curcumin/krill oil/folic acid. Working on minimizing sugar & refined carbs

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Re: New (double E4) and research question about family history

Postby Saskia » Thu Oct 17, 2019 11:07 pm

Wow... have my mother’s results too. She’s 73 and has E4/E4. My dad 87 and E4/E3. Given that my mum drinks way too much I am almost surprised that she’s symptom free. It feels like she’s a ticking time bomb. Or she has other protective factors.
I’ll need to break the news to her (she asked me to manage the accounts).
45 years old, E4/E4 and strangely no AD in (large) family. Mother (73 yo) E4/E4, father (87 yo) E4/E3, both symptom free. Recently started 16h fasts, taking resveratrol/B12/curcumin/krill oil/folic acid. Working on minimizing sugar & refined carbs

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Re: New (double E4) and research question about family history

Postby NF52 » Fri Oct 18, 2019 6:12 pm

Saskia wrote:Wow... have my mother’s results too. She’s 73 and has E4/E4. My dad 87 and E4/E3. Given that my mum drinks way too much I am almost surprised that she’s symptom free. It feels like she’s a ticking time bomb. Or she has other protective factors.
I’ll need to break the news to her (she asked me to manage the accounts).
Hi Saskia,

As someone who is 67 years old, and like your mother also has ApoE 4/4, and has not always had the healthiest diet (I rarely drink, but made up for that with chocolate and stress-eating :roll: ), I'd gently advise thinking about how you "break the news" to her. I know that when I found out my results at the age of 62, and the first thing I saw was that the average age of diagnosis was 68, I felt like the earth had opened up. My husband wasn't worried at all, (and can say "I told you so" now that I'm within 6 months of turning 68) but I could not stop thinking about what my mother and all her sisters experienced in their 80's happening to me 20 years earlier. I have several friends who have lived far healthier and more active lives who have had the same reaction, although it gets better with time and support. We regularly have new users who reports that they can't stop crying, or feel doomed, etc.

Your love as a daughter shines through; I send you and your mom both warm hugs.

So I would suggest that you consider putting yourself in your mom's place, and think of what her questions and reactions might be. Genetic counselors in clinical trials for people with ApoE 4/4 first give people lots of of accurate information: that ApoE 4/4 does not mean someone will get Alzheimer's; that the risk may be about 30-55% for someone ages 60-75 to get either a diagnosis of mild cognitive impairment (MCI) or dementia by the age of 85, so that about 45-70% of people in their 80's and older can have ApoE 4/4 with normal cognition.

I strongly recommend looking at our section on Thinking About Testing and even asking your mother some of the questions. Would she want to know if she had an increased risk of breast cancer in the next 10-15 years? How about a risk of heart disease? How about a risk of Alzheimer's? Would she like to know what doctors recommend to reduce her risk of those and other diseases? She may say "Yes" to the last question only, and then you can help her consider a discussion on what she'd like to work on. (Health coaches can assist in that process of what is sometimes called "motivational interviewing".)
4/4 and still an optimist!

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Re: New (double E4) and research question about family history

Postby Saskia » Fri Oct 18, 2019 11:54 pm

NF52 wrote:So I would suggest that you consider putting yourself in your mom's place, and think of what her questions and reactions might be.
(...)
I strongly recommend looking at our section on Thinking About Testing and even asking your mother some of the questions.


Thank you so much for your thoughtful reply NF52, you raise many very valid points. I think the bits of advice from your message I quoted above are crucial for anyone who has access to results before the affected person does. I'll spend time reading and thinking about this before I talk to my mum.

As for your own story, I may be naive but you're still young and with the efforts you're making now to prevent cognitive decline and the ongoing clinical research throwing some useful data at us every now and then - plus the fact that indeed there is no guarantee that we will get AD even without these efforts very much justifies your signature!
45 years old, E4/E4 and strangely no AD in (large) family. Mother (73 yo) E4/E4, father (87 yo) E4/E3, both symptom free. Recently started 16h fasts, taking resveratrol/B12/curcumin/krill oil/folic acid. Working on minimizing sugar & refined carbs


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