How strictly do you adhere to a prevention lifestyle?

[Nancy]

I think it's great that you're making these wise changes and thinking deeply about the situation. You'll do very well by following the protocol at such a young age. I'm 50 years old. I found out about my status about 2 years ago, a bit less. I began the protocol and stuck to it well. I felt much better and got into the best shape of my life. I fell off the wagon a bit in the past 5 months due to finding out I had a brain tumor. I had a craniotomy 4 months ago. The 2 cm tumor was thankfully benign. But the surgery was major. It was in my left frobtal lobe. So I've only been sticking to the protocol about 60%. The stress of everything and then the healing process, in addition to the demands of motherhood, family, etc, all made it too hard for me to competely stick to the protocol. It's hard with lots of demands, little support, and concentration/thinking difficulties. But I'm determined to get back to maybe 80-90% . I have a hard time not cheating sometimes. I do want to live a little.

[Nancy]

Btw, since most of us are concerned about brain health, I thought I'd mention that ionizing radiation has been found to be a cause of meningioma brain tumors (the type I had). You get ionizing radiation to your brain through multiple xrays (like too many dental xrays) and ct scans. If you want to have your brain scanned, I'd recommend an MRI with and without contrast instead of a ct scan. Also, brush and floss your teeth often and swish with your bottled water often to avoid dental problems, excessive xrays.

[circular]

McGido, so sorry about your recent loss of your father, while I’m also glad he’s not suffering now.

I find your transition to be a very compelling story about what we can accomplish when we aren’t afraid to go deep inside. Don’t worry if sometimes you need to step back if it’s feeling too overwhelming. I know many of us do from time to time, and this forum can gently draw you back like a magnet when the time is right.

[Jan]

... (like too many dental xrays) and ct scans. If you want to have your brain scanned, I'd recommend an MRI with and without contrast instead of a ct scan. Also, brush and floss your teeth often and swish with your bottled water often to avoid dental problems, excessive xrays.

Nancy ... you are extraordinarily kind. All of your posts reflect it, but adding this exhortation, to help others, when you yourself are still recovering from a major event --- has to give you beaucoup points on the cosmic scale. We're lucky to have you on the forum.

[Anna]

I love this question as well as reading all of the answers! My short answer: This is a work in progress!

My current diet is pretty decent, but I started heading this direction well before learning my 4/4 status (Dec 2016). I have no forbidden foods except wheat (which I stopped tolerating several years ago). I buy mostly organics (maybe 80%). I eat a lot of vegetables, but there is still room for improvement; avocados are a staple. I usually limit fruit to 1 serving (occasionally 2) per day. I rarely drink juice but do have white wine (maybe 1 to 2 small glasses a week, sometimes none). I do eat grains, legumes, and potatoes, but try to not go too crazy on starches and high-lectin foods. I recently cut back on saturated animal fat as well as coconut oil -- still undecided about how much is OK. I am somewhat generous with olive oil. I eat a lot of nuts and seeds -- probably too many! My weakness is dairy. I heard a Gundry talk in which he said he can usually tell which patients carry ApoE4 based on how much cheese they report consuming; hmm, that explains a lot. If I'm going to have dessert, it's usually a square of dark chocolate, ice cream, hot chocolate or sometimes oatmeal with maple syrup. I still put a little sugar in my coffee or honey in my tea. I rely mostly on poultry (usually organic), salmon, small quantities of red meat (grass-fed if hamburger), and pastured eggs for protein. I have increased fermented foods because I believe gut health is a crucial component of AD prevention. My meal plans are extremely uninspired and limited, and my family complains! I hate to cook, but I also don't like people cooking for me. If I travel, dine out, am a dinner guest, have guests, or am just too tired to get it right, I relax my standards.

As for other prevention strategies . . . I sought out a functional medicine doctor -- lots of tests, supplements, and hormone tweaking. I completely stopped taking anticholinergic medications, like antihistamines. I tried the mild ketosis thing -- promptly got sick (including reactivated EBV ), so ketones are on hold. Not sure if that's why I got so sick; maybe that combined with stress and insufficient sleep. The planets need to be aligned for me to sleep well -- need to work on that. Exercise -- need to do better at that too, once I get past my EBV setback. Lately, I've been adding in detox strategies -- infrared sauna, Epsom salt baths, dry brushing; if nothing else, these things are relaxing and help me sleep. I'm also making it a point to be less driven, which has been oddly easy (probably in part because my perspective has changed, but also because I'm just too tired!).

[seaweed]

I'm 38, ApoE 4/4 and have also been wondering how much is necessary for prevention vs. reversal. I know when it comes to attempting to reverse decline, Dr. Bredesen said at his book signing last week that patients who go off of ReCODE for 10-14 days start to have decline, and will begin from a lower baseline upon reimplementation. He didn't mention guidelines for prevention, though.

For me, I think it comes down to the fact that I'm not the type of person who can indulge in moderation or have "cheat days" and then easily get back on the horse. Gretchen Rubin, an author who studies habits, has labeled this the issue of abstainers and moderators. Moderators tend to do better when they avoid absolutes and strict rules. (It sounds like dingter would definitely be a moderator based on his/her earlier post). Abstainers have an easier time giving something up altogether.

So, knowing that I'm an "abstainer," I plan on being as strict as possible. I do plan on lightening up on the dietary restrictions when I'm on vacation or out of the country, though. For some reason, the signal/trigger of returning home allows me to get back on the horse more easily than trying to come out of a cheat day.

[Nancy]

Seaweed, that's great that you know yourself. Knowing what works best for us really helps. Starting early like you are will be very beneficial, too.

[TheBrain]

McGido, I’m so sorry for your loss of your dad. Losing a parent can be a transformative experience. It sounds like it has been for you, especially given the cause of his death and your own 4/4 status.

This is a great discussion. I must be an “abstainer” (thanks, seaweed, for that information). However, I have many food sensitivities, so if I cheat and consume any of them, there are consequences, and they aren’t worth it. In my youth, I was a binge drinker. Over time, I’ve consumed less and less alcohol because it doesn’t agree with me. I can’t even drink wine now. But a shot of vodka with water, squeezed lemon, and stevia once or twice a month is okay for me. One thing I indulge in about twice a week is weed. It’s my antidepressant.

That said, I am obsessed with my health, and the only time I feel joy is when I’m high. Per Searcher’s suggestion, I need to engage in more activities I enjoy. However, I struggle with enjoying my life when I don’t feel good, which is just about every day. I want to write, but the daily mental fatigue I experience can be very limiting in that regard. I’m hoping that after I get past mold illness (Chronic Inflammatory Response Syndrome), my life will open up. I’ve read that after people with mold illness and many food sensitivities get better, they can often safely reintroduce foods they have been sensitive to. Maybe then I’ll have to fend off cheating. I welcome the challenge.

[Jlhughette]

I have been strict and compliant for 6 months, and then something happens and I find it really difficult, and return to worse foods and habits. I struggle and struggle, then get back on with no trouble or effort for another 6 months. The longest for me so far has been a year, without that dreaded return to not being in control. I think once neurological pathways are laid down, it is almost irrestible not to return to. I feel like I have been like this my whole life! The fear of having AD doesn’t help. The stress of caring for family members with AD seems to trigger an empathy response. Like I AM them, with the same feelings and thoughts. It’s horrible. My whole family has always been able to see multiple points of view, therefore “open minded”. But it is exhausting! Brilliant and accomplished when young, then turn 75, or 85, and AD appears. In my sister’s case, 50!!! That’s why I love this forum so much, and refer to it daily. But I’m now in one of those periods where it is more of a struggle to stay on the program, which I am doing for prevention. No sugar, no grain, no starchy veg, ketosis, lots of olive oil, MCT oil for a year, then somehow slip back to something else. Sugar and bread. Ugh.... and symptoms of not feeling very well immediately appear. Hoping jumping back on and feeling great again will do the trick! Fear doesn’t seem to help. Nor anger. Nor understanding, nor embarrassment. Anyone else been here? I at least take notes and it does seem like the times I am not 100 percent on the program are of shorter and shorter duration. And at my base I crave and love the healthy lifestyle. And I have fewer horrible symptoms. Like chronic runny nose, which I used to have when I wasn’t strictly clean eating. But there really isn’t much of an upside, other than using myself as a guinea pig. When I seee my parents, who lived on organic food and were health nuts until in their 70s, when they decided to eat convenience food instead, and then got cognitive decline, one with AD, I feel angry and helpless! I was not able to convince them to go back to organic and healthy eating, and exhausted myself trying. Now I do not try, as my mother is in late stage AD and my father has arterial memory loss. They are 87 and 91. I think seeing them change like that is still a shock and has something to do with my apparent ambivalence. But I am not ambivalent, instead feel betrayed somehow, angry even and defeated. I know I have chosen a path where complexity and no simple answers are part of the solution, and part of the problem. Not looking for sympathy, but anyone else have similar issues?

[Searcher]

TheBrain,

It's quite ok to not feel good. That's part of being human. Feelings come and go like the weather.

You write here already, despite the constraints, and very lucidly. That's a reason for celebration. You're doing what matters to you. That's the route to a deeper satisfaction than passing emotions can provide. Keep going. I'm sure people facing challenges of their own draw inspiration from you.