hello and some questions :)

[Julie G]

You are very kind, Pal. I never took that comment as a criticism- just trying to understand the code FWIW, my diet is probably more Mediterranean than Paleo, but who cares- it's very easy to get lost in labeling and semantics. You are so right that we are all searching for the same thing. Unfortunately "evidence" for our population is mixed

God bless you for combing the fat threads. They were a labor of love & absolutely incomplete. Please feel free to add; something I hope to get back to...

[Stavia]

I wasnt actually specifically thinking paleo when I was talking about agendas, I was thinking of those who start off biased and then cherry pick studies to confirm their bias. There are unfortunately numerous authors who I feel take advantage of gullible or desperate people to sell their book or their agenda, and disseminate information or misinformation specifically selected to support their hypothesis. I have no intention of specifically identifying any of these. Sorry if my mark caused consternation. Not my intention.
If there is evidence re paleo and apoe4 progressing or not progressing to LOAD, I'll be very happy to look at it. I just dont think lipid profile is a good enough surrogate outcome to be personally convinced.

I was thinking about surrogate markers today. For instance LDL is a surrogate marker. This should not be only about treating the numbers. Our real endpoint is progression to LOAD. We should be careful not think that The lipid profile is the only variable to target. All AD is likely to be multifactorial, probably apoe4 as well. I am hoping that if I can identify as many protective factors as possible and target them all, I can delay the onset some decades by which time we will know more. For instance in no particular order I am doing the following (which is actually very similar to injury recovery protocol) - good sleep, high level cognitive activity, learning to play the piano, learning a foreign language that has a different alphabet, keeping engaged with family and friends, no alcohol, keeping a healthy bmi, keeping my mood positive (with mindfullness) and excercise. And mediterranean diet for the meantime.

I believe its imperative to stay unbiased until all the evidence is critically appraised and I am delighted to have found a community that is open minded about possible solutions for us.

[RBK]

Stavia,

Welcome! Sorry to hear how you found out, but very happy to have you here. I've been here several months now and can vouch for the group's open-minded approach and respectful debates of various issues. We really do care about each individual's outcome here. Very knowledgeable group, so as Susan suggested, do throw your questions out in the various threads. You will get wonderful responses that will lead you in the direction of researching items for yourself. The group happily shares a HUGE collective knowledge base.

Traveling for meetings and must run. Again, welcome!

[Gilgamesh]

Stavia- Welcome! (And welcome to pal, if I forgot to welcome pal!)

Back from conference; will try to catch up in the next couple days.

Just wanted to note smth: There might be people with (somewhat) predetermined agendas here but my experience is that most of them (us) are open to "redetermination" of the predetermined agendas. But we all risk becoming irrationally attached to our protocols because so much is riding on the protocol's success or failure....

I think the thing that most makes this group have a sort of collective open-mindedness is, curiously, quite simple: there is an extraordinary level of kindness and emotional support. It makes it easier not to dig one's heels in. That might sound goofy, but there are many studies ("small group sociology") that have explored this. (And collective kindness is tightly, though not perfectly, correlated with presence of many women, esp. non-first-borns, and/or, to a lesser extent, non-first-born men.)

GB

[Julie G]

Stavia, my friend, sorry your intro & welcome has turned into a philosophical discussion about bias This certainly isn't our typical way to welcome new members, but a great (and necessary!) discussion nonetheless.

I wasn't actually specifically thinking paleo when I was talking about agendas, I was thinking of those who start off biased and then cherry pick studies to confirm their bias

While I wholeheartedly agree with your concept in principal, keep in mind everyone here is human, and comes to the table with their own set of biases resulting from personal experience. We are ALL fighting for our very lives and the evidence about prevention for ApoE4 is contradictory and emerging- hence the creation of this site.

There are unfortunately numerous authors who I feel take advantage of gullible or desperate people to sell their book or their agenda, and disseminate information or misinformation specifically selected to support their hypothesis.

While I understand the well-meaning intention that you're conveying, many of those authors are also eminent physicians who have dedicated their careers to preventing Alzheimer's. Shall we disqualify the ideas of Drs. Neal Barnard, Larry McCleary, Rudy Tanzi, Deepak Chopra, David Perlmutter, Gary Small, Mary Newport, Daniel Amen, etc. simply because they've written books? Keep in mind, that the varying advice from even this short list of doctors is wildly contradictory.

Speaking of the ApoE4 community, as a whole, we tend to be intelligent, well-read, and motivated to find evidence-based prevention concepts. I wouldn't consider the folks here, who take the time to stay abreast of the latest research as it becomes available, gullible. I totally realize you (hopefully) weren't referring to us specifically.

I hope all here feel welcome to support or critique ANY and ALL concepts. That is why we created this site. We ask that you do so respectfully (without name-calling) and with specificity. Please critique specific concepts, rather than attack individuals. In the past, we have had members critique books, for instance, that they had never read. Or, write book reviews based on other book reviews, etc. I've devised an intellectual exercise for myself, where (off-site) I work to defend positions I do not support, to more fully understand them. I can't begin to do that without immersing myself in the reasoning/original evidence behind the philosophy. Until we can account for the successes from the contradictory perspectives; we have learned nothing.

I have come to love this group, for many reasons. The wide variety of perspectives that we bring and represent, IMO makes us stronger. I, personally, have garnered an incredible amount of support and knowledge from the members here for which I am very grateful.

I was thinking about surrogate markers today. For instance LDL is a surrogate marker. This should not be only about treating the numbers. Our real endpoint is progression to LOAD.

Amen, my friend. We have learned overly focusing on one bio-marker can lead to the detriment of others. Check out this thread about AD bio-markers to monitor: viewtopic.php?f=4&t=281

Please know that NONE of this is a criticism directed at you in any way, Stavia; but rather an opportunity for an important group-wide discussion. Forgive me for using your intro as my platform. We are delighted to have you among us & hope to learn much from and with you.

G, Lovely comment. I had no idea you were a fellow Adlerian. All of my comments should come with a warning label identifying myself as a second born female who was forced to assume the role of first born (it was abdicated) with a homozygous MAO-A defect, sometimes referred to as the warrior gene

[Stavia]

what an interesting discussion! I'm delighted to be a reason for a deep discussion. It's really good to question one's philosophical framework before even beginning the huge task of assessing and discussing the evidence, I hadn't considered this yet and doh! obviously it's critical. Thank you for starting the discussion! I would not have questioned my starting point without this. Being trained in evidence based medicine I thought I had no bias but obviously I must have - my life is at stake here - and we all bring our life's experience and fears with us. Julie, you are a very clever second born warrior (I have the worrier variant and am third born). I love it that you play devils advocate.

I have been looking through the old threads (sigh - I think it'll take me at last a month to get my head around it all, my first task is fully understanding the biochemistry of APOe4) and am struck by how knowlegable and smart everyone here is. I was actually thinking of some of my patients over the years when I said gullible, I have seen some very sad situations of desperate ill people paying heaps for essentially snake oil or fake electrical/magnetic machines. I know this begs the question of perhaps its their choice, makes them feel better etc, but I feel the seller of such remedies is often unethical. There is probably a whole spectrum of motivation and ethics between those peddlers and respected scientists who truly believe they are doing the best. How to work out where the grey becomes white enough to be valid? Thats what I am here for - to find a community who can try to help me decide which ones of a myriad of often contradictory interventions to choose.

Gilgamesh, thank you for your kind words. I can see that here is a good community - and we know that one of the protections against AD is engagement socially....I love it that everyone here has a common experience. I hope to get to know everyone better.

RKB, I am so pleased to have found such a wealth of knowledge. Thank you!

[Julie G]

Stavia, REALLY- you've got the MAO-A defect too??? Quite a few here as well; although as G points out- statistically not that unusual. Still, fabulous to have another ApoE warrior among us

You're beyond gracious to hear my underlying message (really directed to the group as a whole) when I'm sure I'm certainly a huge offender myself Being human means we all have bias based upon our life experiences. For most E4 strategies, there is an opposing strategy- all nicely supported by research...making a very difficult position even more difficult

I LOVE your focus on evidence. We are blessed to have you help us sort things out.

[Kitsy]

Hello Stavia,
I am sorry to hear that you are going through this ordeal as well. I am glad you found this forum as it helps to share support and ideas. I went through the stain quandary at first but after looking through many research articles concluded the evidence points int the direction of statins helping even for 4/4's like us. I too lean toward evidence based findings but it takes a lot of time and intestinal fortitude to comb through it all. I have a Ph.D. But no background in this genetic arena. I have learned more than I care to but every piece of the puzzle has the potential to help. It can be confusing because one day you read one thing the next another. I respect that everyone has their own beliefs about what they should or should not take or do. For me, I have so far been following the advice of daily exercise, calorie restriction (have lost fifteen pounds since last November), try to eat as close to Mediterranean diet as I can, take a low dose statin, krill oil, magnesium, coq10 and try to keep my stress down. I do take coconut oil capsules although I have heard various conflicting reports as to their value. The coconut oil seems to help with the belly fat which is significantly reduced now. As I have said in the past, I feel optimistic that something will be found soon to help us all. I have not yet seen a neurologist, I am afraid to have any information on my insurance and don't feel ready to take it on emotionally. Any information you can share from your neurologist will be appreciated by all. Hang in there and add a dose of humor. It seems to help too!
Kitsy

[Stavia]

Thank you Kitsy for your kind words.

I was lucky that my neurologist agreed not to write anything down and we just talked. As far as my insurance is concerned it was for my migraines. I understand your desire for privacy and it being so raw. I'm still on a bit of a roller coaster. But hiding it from everyone except this forum. As far as a couple of family and friends know, I'm fine. But obviously I'm not. I'm gutted.

I'm trying classic Mediterranean diet for now. It's actually very delicious and I'm feeling satiated even though I've slashed my calories. My husband is delighted in all the varied delicious meals!

I'm also finding it hard going looking through all the evidence. I guess its good cognitive excercise! I know exactly what you mean by learning more than one cares to. Sigh.

To balance the terrible stress I've started mindfulness meditation. It's been really useful.