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cognitive disconnect - do you "feel" you are reducing risk?

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Fiver
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cognitive disconnect - do you "feel" you are reducing risk?

Postby Fiver » Fri Apr 12, 2019 10:11 am

Here's an odd question.

Like many here I have several family members who have or had dementia - grandfather, grandmother, aunt, and, currently, my mom - and I have the genes to prove it. And like so many of us I too dove into the research literature and downloaded everything I could from the experts. I've come to a strange place where I am convinced by what seems to be good data that there are modifiable risk factors, e.g. lifestyle interventions that help to delay or prevent AD to some degree. So I've adopted many of the lifestyle changes, especially those that are bound to improve my overall health. But, and I know this is an odd disconnect, I've also developed this gut feeling that it just won't help me much personally. Oh, I don' t mean to be a pessimist. I just don't feel it at a gut level. I don't see myself in the datasets about populations in Finland or Japan. Maybe because I have a lot of risk factors to offset. Maybe because there's no way to monitor the current or future status, until there are outward symptoms.

Maybe it's just me. Anyone else come to this odd place in our journey? and solve it?

Thanks everyone. This has been bugging me for a while.
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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby mike » Fri Apr 12, 2019 3:54 pm

Fiver wrote:Here's an odd question.
Maybe it's just me. Anyone else come to this odd place in our journey? and solve it?
Thanks everyone. This has been bugging me for a while.

Fiver, I'm planning to get a vMRI soon. Seems like that is the best evidence about whether you have neurons dying and are losing brain volume. Supposed to start decades before cognitive issues arise. I'm hoping at age 59, mine is still good, but regardless it should serve as a reference point going forward. If I can keep my neurons from dying, then I figure I can avoid Alzhiemer's... I would rather not wait to get/not get cognitive issues before I know whether or not what I'm doing is working.
Sonoma Mike
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Julie G
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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby Julie G » Fri Apr 12, 2019 5:00 pm

Maybe because there's no way to monitor the current or future status, until there are outward symptoms.

Hi Fiver! Maybe I'm being Pollyannish, but I don't believe this is true. For instance, once we launch our biomarker study, I think we're going to have an unprecedented opportunity to look at how the strategies were employing are affecting us at a metabolic and hopefully proteomic level. By checking those markers quarterly, we'll have the opportunity to run N=1s within each quarter. As an example, you could do one quarter with a statin and one quarter without. I have good reason (given my previous symptoms) to feel doomed, but I'm actually very optimistic for those of us at high risk. I can tangibly feel the effects when I do things right and when I do things wrong. I look forward to backing this up with data. I've had the pleasure of getting to meet you. You're smart, young, fit, and practicing precision epigenetics. I feel really hopeful for you.

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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby TheresaB » Fri Apr 12, 2019 8:02 pm

Fiver wrote: I've come to a strange place where I am convinced by what seems to be good data that there are modifiable risk factors, e.g. lifestyle interventions that help to delay or prevent AD to some degree. So I've adopted many of the lifestyle changes, especially those that are bound to improve my overall health. But, and I know this is an odd disconnect, I've also developed this gut feeling that it just won't help me much personally.


We can’t help what we feel. What you feel is very real, I’m not diminishing it whatsoever. I wish you didn’t feel that way, but if I tell you “don’t think like that” will it do any good?

I will say that after food, our emotions and thought patterns are our primary epigenetic modifiers. So while you may be employing all the right lifestyle strategies, if you think, “this is doing no good” you might be right! Dr Candace Pert, a molecular biologist and author of Molecules of Emotion discovered that certain proteins and immune system cytokines facilitate and integrate communication between the brain and body. In other words our bodies reflect our thoughts.

In a TED talk, How to Make Stress Your Friend health psychologist Kelly McGonigal said, “People who experienced a lot of stress but did not view stress as harmful were no more likely to die. In fact, they had the lowest risk of dying of anyone in the study, including people who had relatively little stress.” In other words how stress was viewed by the individual was more important than the actual stress.

So I recommend work at changing your thoughts patterns and emotions. How? I’m not sure how best to advise you, I think you might know the best direction. But I'm glad you've had the courage to acknowledge this and hope that it gives you the strength to meet it head on.

The title to your thread asked, ” do you "feel" you are reducing risk?” My answer is YES!

My family history consists mostly of cancer, cardiovascular concerns, or issues likely related to MTHFR gene mutation, all probably before Alzheimer's had a chance to develop. Yet I am a 4/4 with negative family health history and I don’t feel doomed at all! It’s because every day I work at controlling inflammation, insulin, sleep, stress, etc. I don’t just feel what I’m doing is healthier, I’ve witnessed positive trends in objective, measurable biomarkers, and that reinforces my feelings of optimism. Sure, I can look back at a lifestyle that use to hold negative health habits, but that's in my past, no longer applicable. Not every one of my biomarkers is perfect currently, but I keep working. I continually endeavor to understand general health concerns and my genetics, such understanding bolsters my resolve to stick with it.

I acknowledge no one, including myself, is “bulletproof” and there may be health strategies where we’re misguided because research hasn’t uncovered certain critical concerns yet, but knowing I’m doing something that’s probably the 80% solution gives me hope.

Maybe I’m a fool for feeling so positive, but that’s okay, I’ve been called much worse in my life.
-Theresa
ApoE 4/4

Fiver
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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby Fiver » Sat Apr 13, 2019 6:38 am

Thanks Mike. You're right vMRIs are a possibility. I was impressed by the ease and low cost of my recent heart calcium scan, and the good feeling of being able to track that over time.

Hi Julie. Thanks. I'm going to read up on the bio-marker study. That sounds like it could help move research forward, be a useful tool, and give some peace of mind.

Thanks Teresa. I try to be aware of the negatives of stress and benefits of a positive mindset. I agree, they are powerful.

It is an odd thing, to be convinced that there are things that can lower risk and to actually do some of them, but not feel the progress. The "feeling" part is probably just seeing AD in family members with whom I share a lot of traits. Sometimes it's like a mirror.

Thanks for the comments!
Concerned, but hopeful. Introverted, but will talk about science.

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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby Indywoman » Sun Apr 14, 2019 8:09 am

This is an interesting question, and I probably have a rather unusual answer. When I found out my 4/4 status, I retired a year early from a stressful job, and I changed as many factors as I could with the absolutely invaluable help from this site and all the wonderful members who added insight, information and comfort on any given day of a 'check in'. But like you Fiver, I still felt I would get AD. Dash Genomics seemed to confirm that, with my genetic profile showing that only one person in a hundred had greater odds than me of getting the disease. Deep down, I knew why I was pessimistic and it was primarily because I had no control over what happened to me IF I were to be diagnosed.

Once I pinpointed my panic and despair, I researched my options. To cut to the chase, I have a membership in Lifecircle/Eternal Spirit in Switzerland with Dignitas as a backup. Joining a place that will compassionately help me die if I get AD, unlike any place in the U.S., including those with laws allowing medically assisted dying, and doing the hard part of telling my family, has given me the most liberating peace of mind. I am now so much happier, and much more positive about all the lifestyle and risk factors that I actively work on each day. I no longer feel trapped or imprisoned by my status. It is having a plan in place that has invigorated me, allowing the freedom to work on modifying my risk now. I feel hopeful with less stress.
4/4. Do something today that your future self will thank you for.

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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby NF52 » Sun Apr 14, 2019 9:49 am

Fiver wrote:Here's an odd question...
Maybe it's just me. Anyone else come to this odd place in our journey? and solve it?
Thanks everyone. This has been bugging me for a while.
Indywoman wrote: I am now so much happier, and much more positive about all the lifestyle and risk factors that I actively work on each day. I no longer feel trapped or imprisoned by my status. It is having a plan in place that has invigorated me, allowing the freedom to work on modifying my risk now. I feel hopeful with less stress.

Hi Fiver,
Not an odd question at all. I think it's an existential question. Most people who have not been diagnosed with a current life-threatening condition don't have to grapple with immediate consideration of what the last years of their lives might look like. Very few have to figure out how to react to a diagnosis of a serious risk, but not a personalized certainty, of a future change to our core identity. Add to that our personal experiences of seeing this disease or some variation of it in numerous family members and I think this "odd place" is the "home neighborhood" on any given day for many of us.

For myself, I have become more comfortable with changing the terms of the question. The risk is always going to be a meta-analysis answer. The personal question is how to construct a vision of our future self that we can accept even as we strive to drive down our risk. When I found out my 4/4 status, I was almost 62 and told my husband that the average age of AD diagnosis was 68, and believed that might be my fate. At 67, with the ability to do just fine on biannual cognitive testing, I no longer believe that "risk" applies to me. Nor does my dad's fate of cardiac arrest at age 67. In fact, I no longer believe that the most "prevalent" age of diagnosis on recent articles of 74 applies to me either, since I have no signs of micro-bleeds, changes in MRI, white-matter disease or incipienct signs of MCI which I would expect 5-7 years before a diagnosis.

So my personal risk assessment is still about a 60% chance by age 80+. But I also have a familial chance of colorectal cancer by that age, and as a "DES-daughter" an increased chance of breast cancer by that age. By the age of 80, I will have outlived many people not fortunate to have had the life I have had. If I am diagnosed in 10 years or more, I will not be traveling to Switzerland like Indywoman. I do respect her own vision for her future self (and would go with her for a vacation and sneak across the Austrian border to see my ancestor's home village). Upon a diagnosis, I hope that I could mourn what I might still lose, but feel deeply that I had lived a purpose-filled life and, even with a receding memory of that life, could still be a person who loves and is loved.
4/4 and still an optimist!

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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby DebbieG » Sun Apr 14, 2019 10:33 am

Fiver wrote:Here's an odd question.

Like many here I have several family members who have or had dementia - grandfather, grandmother, aunt, and, currently, my mom - and I have the genes to prove it. And like so many of us I too dove into the research literature and downloaded everything I could from the experts. I've come to a strange place where I am convinced by what seems to be good data that there are modifiable risk factors, e.g. lifestyle interventions that help to delay or prevent AD to some degree. So I've adopted many of the lifestyle changes, especially those that are bound to improve my overall health. But, and I know this is an odd disconnect, I've also developed this gut feeling that it just won't help me much personally. Oh, I don' t mean to be a pessimist. I just don't feel it at a gut level. I don't see myself in the datasets about populations in Finland or Japan. Maybe because I have a lot of risk factors to offset. Maybe because there's no way to monitor the current or future status, until there are outward symptoms.

Maybe it's just me. Anyone else come to this odd place in our journey? and solve it?

Thanks everyone. This has been bugging me for a while.


Hi Fiver,

My mom (age 84) and I are both 3/4s. I'm 64 and a couple years ago I started having trouble placing a name with a face, for example, I would meet someone in the hall at work and not be able to pull up their name to greet them. Around the same time, my parents faced a MCI diagnosis for Mom. They started implementing the Bredesen protocol and I did the same (but with far fewer test results to guide me). Mom is pretty much maintaining and maybe has had a few improvements but she's not making the progress they expected.

My memory is definitely better although I do sometimes have a hard time recalling things like names of books or authors I read in the past. I'm continuing to learn more, with this site being an excellent resource. I feel that if I can keep up with my supplements and nutrient-dense diet, optimized sleep, add more exercise, etc, I will be OK. My worry is the expense: when I'm older and retired will I be able to afford the foods and supplements i need?

Debbie

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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby Anna » Sun Apr 14, 2019 10:10 pm

I think it's a good question. The short answer . . . I absolutely feel that I am reducing my risk. Long answer . . . I am painfully aware that I have many risk factors: ApoE 4/4, other AD genetics, family history, homozygous MTHFR 1298c, homozygous H63D (absorb iron a bit too readily), and current health challenges (autoimmune, EBV, heavy metals).

Fiver wrote:Anyone else come to this odd place in our journey? and solve it?
I come to this odd place periodically in this journey, and my attitude depends very much on how things are going in my life; it's much easier to feel optimistic and empowered when other things in my life are going well. Finding myself at this "odd place" is not something I expect to solve for good. I just think it's part of the journey -- maybe even a necessary part, for without fear, there would not be motivation to work so hard on prevention. That said, something that helps me is to simply remind myself of all the things I have going for me: good lipid profile, labs that show no signs of insulin resistance, and a genuine interest in "biohacking" my brain and overall health. It's easy to focus on our risks and forget to tally our strengths.
~Anna
4/4 but so much more

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Re: cognitive disconnect - do you "feel" you are reducing risk?

Postby PSu82537%a6r_dnz » Mon Apr 15, 2019 1:10 am

Fiver wrote:Here's an odd question.
..….
I've adopted many of the lifestyle changes, especially those that are bound to improve my overall health. But, and I know this is an odd disconnect, I've also developed this gut feeling that it just won't help me much personally.
……
Maybe it's just me. Anyone else come to this odd place in our journey? and solve it?

Thanks everyone. This has been bugging me for a while.



Hello Fiver,


This is a good question, and it sort of echoes something brought up in a local meetup I just finished attending. One of our members said something to the effect that none of this is guaranteed, and what if I put in a lot of effort with these lifestyle changes and I go ahead and get Alzheimers anyway? My response was that all of these lifestyle changes are very positive and worthwhile in their own right, whether or not they reduce risk in any proveable way. Because of family history I have always assumed I would get Alzheimers someday, unless something else killed me first, it just seemed inevitable. Getting the 23 and Me report that confirmed my E4 positive status did not just confirm that for me, it also motivated me to begin the lifestyle changes in the attempt to "reduce the risk" or "delay the inevitable." I don't really know if I "feel" like my risk is reduced, but what I do know is that I just enjoy life more now, on a day-to-day basis, because of those lifestyle changes, and I needed the impact of the E4 report to motivate those changes. Whether I get Alzheimers later, or sooner, or not at all, I am very glad I was able to make these changes. I am glad I became aware of the Bredesen book, and through it, this website. At this point I have only implemented maybe three or four of the changes, and I plan to implement more as time goes by. I guess I will never be sure I have reduced risk, it subjectively seems likely, but there is really no way to prove it. It is kind of cool to imagine a magic calendar that tells me, "today is the day I would have gotten Alzheimers if I had not gotten onto the protocol" but because I did get onto the protocol, my Alzheimers commencement date is delayed five years, or ten years, or cancelled. While that is a fun fantasy, the real reward for me is just a better quality of life as I wait to see what comes next.


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