Feel like my time is running out

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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William
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Feel like my time is running out

Post by William »

Hi all. I've lurked here over the years but have never been active. I may have made an introductory post once years ago but, ironically, have forgotten.

I'm about to turn 40 in three weeks. I've known for years that I'm an ApoE 4/4 with an origin story that I know is incredibly common: I bought 23andMe tests for myself and someone else as a gift, got the 4/4 result and went down a rabbit hole figuring out what that even meant. It lines up in the sense that Alzheimer's is common on my Mom's side of the family. My great-grandmother and grandmother both had it, and while my ApoE 3/4 mother currently still has her marbles at the age of 68, I always worry about her.

I researched Alzheimer's and ApoE4 a fair bit when I found out (This site was a great resource and I thank you so much for that) and I became so overwhelmed with it all that I decided "Hey, I'm in my mid-30s, there's some distance here. I'm going to try to relax and put this out of my mind" and I largely did that. But now as I'm about to turn 40, all that distance feels gone. I know that probably sounds ridiculous to people reading this who are decades older than me, but knowing that Alzheimer's often starts developing long before it presents, and knowing I'm reaching the age where for all I know it's already started, terrifies me. I think about plaques starting to accumulate, I think about damage in my brain and decreased volume just slowly accumulating over time, and the idea of it starting now. I saw the study this year that pointed out 88 percent of the ApoE4 subjects involved had dementia, and by age 55 95 percent of ApoE 4/4s had biological markers of the disease, and while I know that study might not tell the whole story, and while markers of disease does not necessarily mean you have symptoms of dementia, it still frightens me.

Ever since I found out I was ApoE 4/4, I've been hypersensitive to changes in my mind. Is my memory getting worse? More brain fog? It feels that way. Is it all in my mind? Natural aging? Something more? I don't know. I am a person who really likes the comfort of certainty, so this whole situation is my nightmare. Not knowing if I'll get this and if so, not knowing when.

I feel hopeless. I've done a fair bit of research. I've read much of Dale Bredesen's End of Alzheimer's book that some recommend here. There is certainly a lot of smart sounding and encouraging advice there, but it also adds up to a ton of tests that I and many others simply can't afford or convince our doctors to order (I tried when I had a family doctor and they rejected the idea, and in the years since my doctor has left and as I live in a city with a serious shortage of physicians accepting patients, have not been able to even find any new doctor, let alone one open to this). Likewise, the diet changes and supplements: some I can implement, but for me and a lot of others, it is simply not affordable or feasible. I totally understand the merits of Dr.Bredesen's approach of trying to attack this from dozens of angles at once, to patch all these different holes in the walls to protect ourselves, but the sheer amount of requirements is overwhelming, and the fact that I can't come close to adopting them all is depressing.

I look at the coming medicine and even that doesn't seem uplifting. The recently approved drugs offer a marginal and debatable slowing of the disease, nothing more, and as an ApoE 4/4, my increased chances of severe side effects seem almost disqualifying. I know ALZ-801 has had somewhat promising results, but even that is based on a small sample and seems to be presented in a way designed to, understandably, paint their results in the best light. And the idea of that being tested as a preventative measure will take years, and who knows it'll bear fruit. Just more time ticking off the clock.

As I stand here about to turn 40, I am going to try things. Since discovering I was ApoE 4/4, I have lost weight and improved my diet, but I'm still overweight and my diet could still be better. I will address both of those things. I could do with more exercise. I'll address that as well. I'll try to add supplements where I can. I'm not going to ignore this anymore, even if that would bring me comfort. I don't think I could if I wanted to. Whenever I think about my future, there's always a ceiling now. When I think of myself in mid-50s and 60s, which doesn't seem very far away now, I know I can't assume my mind, my self, will still be there. It colors everything I think about and plan for when it comes to the future. I don't ever imagine myself as in my 70s or 80s. I don't see it likely when I look at my family history and my genetics and my inability to be as vigilant as so many of you are in preventative measures. I value my mind above everything. I've always been somewhat intelligent, I've always lived in my head. I've worked as a paid writer. If you could've picked a single potential health problem to terrify me, this would be the one. Losing the ability to talk, hear, walk, even see, all seem more manageable than this.

Sorry to be a bummer. I've just tried to be honest with my emotions at a time when I'm pretty low. I want to thank you all again for all the work you've done. You probably don't realize how many people are like me, not posting but reading all your words, learning from you, cheering on your victories. You affect more people than you know. Sometimes I'm grateful I know I'm ApoE 4/4, that maybe I can try to work harder to stave off Alzheimer's. But other times, for the amount of stress, grief and fear it's brought me, I wish I never knew my reality.
Plumster
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Re: Feel like my time is running out

Post by Plumster »

Taking care of your health through nutrition, exercise, sleep, and socializing are the top preventative factors. I am glad that you will find ways to prioritize them moving forward. The more you exercise, the healthier you'll want to eat. It's a beneficial cycle. I wish you good luck!
e3/4 MTHFR C677T/A1298C COMT V158M++ COMT H62H++ MTRR A66G ++ HLA DR
JD2020
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Re: Feel like my time is running out

Post by JD2020 »

William wrote: Wed Jul 17, 2024 1:57 pm I became so overwhelmed with it all that I decided "Hey, I'm in my mid-30s, there's some distance here. I'm going to try to relax and put this out of my mind" and I largely did that. But now as I'm about to turn 40, all that distance feels gone.

I've read much of Dale Bredesen's End of Alzheimer's book that some recommend here. There is certainly a lot of smart sounding and encouraging advice there, but it also adds up to a ton of tests that I and many others simply can't afford or convince our doctors to order (I tried when I had a family doctor and they rejected the idea, and in the years since my doctor has left and as I live in a city with a serious shortage of physicians accepting patients, have not been able to even find any new doctor, let alone one open to this). Likewise, the diet changes and supplements: some I can implement, but for me and a lot of others, it is simply not affordable or feasible.

I don't ever imagine myself as in my 70s or 80s. I don't see it likely when I look at my family history and my genetics and my inability to be as vigilant as so many of you are in preventative measures.
William, hang in there. First of all, at 40, there is still a good deal of distance. A lot is going to change in the next years, you will see. Implement what you can. You have time to take small steps.

I also found the whole program absolutely overwhelming, and I am posting that so that you will know that you are not alone in what you feel. Implement what you can. As for cost, at 40, I would not have been able to afford this, period end of story. No, your regular doc can't help you with this. They don't get enough money from the insurance companies for the appointments to be able to do what they would need to do. Many probably haven't ever seen some of the tests that we take to identify our vulnerabilities. The doctors who do this don't take insurance. My first appointment with my ReCode doc was over 2 hours long....insurance does not pay for that! When you can afford it, get with an integrative doc who can help you identify where to focus your efforts. (blood sugar, inflammation, toxins, etc) Until then, focus on what you can address on your own.

Finally, it is ok to imagine yourself vibrant at 70 and 80. To circle back, a lot is going to change in the next years.
HelenOwens
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Re: Feel like my time is running out

Post by HelenOwens »

William wrote: Wed Jul 17, 2024 1:57 pm Hi all. I've lurked here over the years but have never been active. I may have made an introductory post once years ago but, ironically, have forgotten.

I'm about to turn 40 in three weeks. I've known for years that I'm an ApoE 4/4 with an origin story that I know is incredibly common: I bought 23andMe tests for myself and someone else as a gift, got the 4/4 result and went down a rabbit hole figuring out what that even meant. It lines up in the sense that Alzheimer's is common on my Mom's side of the family. My great-grandmother and grandmother both had it, and while my ApoE 3/4 mother currently still has her marbles at the age of 68, I always worry about her.

I researched Alzheimer's and ApoE4 a fair bit when I found out (This site was a great resource and I thank you so much for that) and I became so overwhelmed with it all that I decided "Hey, I'm in my mid-30s, there's some distance here. I'm going to try to relax and put this out of my mind" and I largely did that. But now as I'm about to turn 40, all that distance feels gone. I know that probably sounds ridiculous to people reading this who are decades older than me, but knowing that Alzheimer's often starts developing long before it presents, and knowing I'm reaching the age where for all I know it's already started, terrifies me. I think about plaques starting to accumulate, I think about damage in my brain and decreased volume just slowly accumulating over time, and the idea of it starting now. I saw the study this year that pointed out 88 percent of the ApoE4 subjects involved had dementia, and by age 55 95 percent of ApoE 4/4s had biological markers of the disease, and while I know that study might not tell the whole story, and while markers of disease does not necessarily mean you have symptoms of dementia, it still frightens me.

Ever since I found out I was ApoE 4/4, I've been hypersensitive to changes in my mind. Is my memory getting worse? More brain fog? It feels that way. Is it all in my mind? Natural aging? Something more? I don't know. I am a person who really likes the comfort of certainty, so this whole situation is my nightmare. Not knowing if I'll get this and if so, not knowing when.

I feel hopeless. I've done a fair bit of research. I've read much of Dale Bredesen's End of Alzheimer's book that some recommend here. There is certainly a lot of smart sounding and encouraging advice there, but it also adds up to a ton of tests that I and many others simply can't afford or convince our doctors to order (I tried when I had a family doctor and they rejected the idea, and in the years since my doctor has left and as I live in a city with a serious shortage of physicians accepting patients, have not been able to even find any new doctor, let alone one open to this). Likewise, the diet changes and supplements: some I can implement, but for me and a lot of others, it is simply not affordable or feasible. I totally understand the merits of Dr.Bredesen's approach of trying to attack this from dozens of angles at once, to patch all these different holes in the walls to protect ourselves, but the sheer amount of requirements is overwhelming, and the fact that I can't come close to adopting them all is depressing.

I look at the coming medicine and even that doesn't seem uplifting. The recently approved drugs offer a marginal and debatable slowing of the disease, nothing more, and as an ApoE 4/4, my increased chances of severe side effects seem almost disqualifying. I know ALZ-801 has had somewhat promising results, but even that is based on a small sample and seems to be presented in a way designed to, understandably, paint their results in the best light. And the idea of that being tested as a preventative measure will take years, and who knows it'll bear fruit. Just more time ticking off the clock.

As I stand here about to turn 40, I am going to try things. Since discovering I was ApoE 4/4, I have lost weight and improved my diet, but I'm still overweight and my diet could still be better. I will address both of those things. I could do with more exercise. I'll address that as well. I'll try to add supplements where I can. I'm not going to ignore this anymore, even if that would bring me comfort. I don't think I could if I wanted to. Whenever I think about my future, there's always a ceiling now. When I think of myself in mid-50s and 60s, which doesn't seem very far away now, I know I can't assume my mind, my self, will still be there. It colors everything I think about and plan for when it comes to the future. I don't ever imagine myself as in my 70s or 80s. I don't see it likely when I look at my family history and my genetics and my inability to be as vigilant as so many of you are in preventative measures. I value my mind above everything. I've always been somewhat intelligent, I've always lived in my head. I've worked as a paid writer. If you could've picked a single potential health problem to terrify me, this would be the one. Losing the ability to talk, hear, walk, even see, all seem more manageable than this.

Sorry to be a bummer. I've just tried to be honest with my emotions at a time when I'm pretty low. I want to thank you all again for all the work you've done. You probably don't realize how many people are like me, not posting but reading all your words, learning from you, cheering on your victories. You affect more people than you know. Sometimes I'm grateful I know I'm ApoE 4/4, that maybe I can try to work harder to stave off Alzheimer's. But other times, for the amount of stress, grief and fear it's brought me, I wish I never knew my reality.
Hello William,

Thank you for introducing yourself and sharing your story. As a Support Team Intern, I'd like to welcome you here. I’m glad that you discovered this forum years ago and have found it useful to “lurk” and explore at your own pace to process the information. Yes, it is overwhelming…scary…and everything in between. You are not alone in this. While it sounds like you are doubting the likelihood of evading a future with Alzheimer’s due to your genetics and questioning your ability "to be as vigilant," keep in mind that, A) Genetics is not your destiny, and B) Learning your ApoE status has already prompted you to take action before the age of 40: to educate yourself, to begin the process of making lifestyle changes, and to seek a supportive community who “gets it”. With that said, there is HOPE.

Hope, for continued research and medical advancements over the years ahead, though I understand that you are not feeling encouraged by what you have looked at thus far. Articles like the one released this year that created quite a stir also generated a lot of discussion and awareness - perhaps the positive impact of increased awareness is a call for more research and more resources.

And, hope, that the lifestyle changes that you continue to make will influence the course of your cognitive health. There are many individuals and inspirational stories here. We all learn from them and sometimes need to hear/read to re-ignite hope and motivation that the changes we make do make a difference.

It is understandable that you can’t or don’t allow yourself to envision yourself in your 70s and 80’s. But what if you DID imagine yourself in your 70s and 80s – living your best life, in good physical and cognitive health? What does that vision look like? What does that feel like? Your mind is what you value most – it sounds like preserving that is of utmost importance to you and worth striving for. You may find that taking small, achievable steps in preventative measures will lead to you to discovering that you ARE able to be just as vigilant as you see in others.

So much of the prevention and mitigation strategies revolve around lifestyle factors within your control. It is a lot though, and can be overwhelming. If I may make a suggestion, start with what is most achievable for you. Then, take the next step. And then, the next...Because “big journeys begin with small steps.”

You may have already read through the Primer - but it is a great place to start, as it is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

As far as finding support in a local doctor who is ApoE-aware, that can be challenging depending on where you are. Here is a link that may help you locate an ApoE-aware Healthcare Practitioner that you may find logistically feasible.

I’d also like to provide you with some helpful tips to navigate the site including the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

Wiki Main Page contains lots of useful information and links to articles for a deeper dive into specific topics.

If you are interested in learning more about other members check out Our Stories.

Thank you for your raw honesty. This is a difficult journey but it’s one you don’t have to navigate on your own. Please don’t hesitate to reach out for support and ask questions.

Warmly,
Helen
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Re: Feel like my time is running out

Post by lana_banana »

William wrote: Wed Jul 17, 2024 1:57 pm Hi all. I've lurked here over the years but have never been active. I may have made an introductory post once years ago but, ironically, have forgotten.

I'm about to turn 40 in three weeks. I've known for years that I'm an ApoE 4/4 with an origin story that I know is incredibly common: I bought 23andMe tests for myself and someone else as a gift, got the 4/4 result and went down a rabbit hole figuring out what that even meant. It lines up in the sense that Alzheimer's is common on my Mom's side of the family. My great-grandmother and grandmother both had it, and while my ApoE 3/4 mother currently still has her marbles at the age of 68, I always worry about her.

I researched Alzheimer's and ApoE4 a fair bit when I found out (This site was a great resource and I thank you so much for that) and I became so overwhelmed with it all that I decided "Hey, I'm in my mid-30s, there's some distance here. I'm going to try to relax and put this out of my mind" and I largely did that. But now as I'm about to turn 40, all that distance feels gone. I know that probably sounds ridiculous to people reading this who are decades older than me, but knowing that Alzheimer's often starts developing long before it presents, and knowing I'm reaching the age where for all I know it's already started, terrifies me. I think about plaques starting to accumulate, I think about damage in my brain and decreased volume just slowly accumulating over time, and the idea of it starting now. I saw the study this year that pointed out 88 percent of the ApoE4 subjects involved had dementia, and by age 55 95 percent of ApoE 4/4s had biological markers of the disease, and while I know that study might not tell the whole story, and while markers of disease does not necessarily mean you have symptoms of dementia, it still frightens me.

Ever since I found out I was ApoE 4/4, I've been hypersensitive to changes in my mind. Is my memory getting worse? More brain fog? It feels that way. Is it all in my mind? Natural aging? Something more? I don't know. I am a person who really likes the comfort of certainty, so this whole situation is my nightmare. Not knowing if I'll get this and if so, not knowing when.

I feel hopeless. I've done a fair bit of research. I've read much of Dale Bredesen's End of Alzheimer's book that some recommend here. There is certainly a lot of smart sounding and encouraging advice there, but it also adds up to a ton of tests that I and many others simply can't afford or convince our doctors to order (I tried when I had a family doctor and they rejected the idea, and in the years since my doctor has left and as I live in a city with a serious shortage of physicians accepting patients, have not been able to even find any new doctor, let alone one open to this). Likewise, the diet changes and supplements: some I can implement, but for me and a lot of others, it is simply not affordable or feasible. I totally understand the merits of Dr.Bredesen's approach of trying to attack this from dozens of angles at once, to patch all these different holes in the walls to protect ourselves, but the sheer amount of requirements is overwhelming, and the fact that I can't come close to adopting them all is depressing.

I look at the coming medicine and even that doesn't seem uplifting. The recently approved drugs offer a marginal and debatable slowing of the disease, nothing more, and as an ApoE 4/4, my increased chances of severe side effects seem almost disqualifying. I know ALZ-801 has had somewhat promising results, but even that is based on a small sample and seems to be presented in a way designed to, understandably, paint their results in the best light. And the idea of that being tested as a preventative measure will take years, and who knows it'll bear fruit. Just more time ticking off the clock.

As I stand here about to turn 40, I am going to try things. Since discovering I was ApoE 4/4, I have lost weight and improved my diet, but I'm still overweight and my diet could still be better. I will address both of those things. I could do with more exercise. I'll address that as well. I'll try to add supplements where I can. I'm not going to ignore this anymore, even if that would bring me comfort. I don't think I could if I wanted to. Whenever I think about my future, there's always a ceiling now. When I think of myself in mid-50s and 60s, which doesn't seem very far away now, I know I can't assume my mind, my self, will still be there. It colors everything I think about and plan for when it comes to the future. I don't ever imagine myself as in my 70s or 80s. I don't see it likely when I look at my family history and my genetics and my inability to be as vigilant as so many of you are in preventative measures. I value my mind above everything. I've always been somewhat intelligent, I've always lived in my head. I've worked as a paid writer. If you could've picked a single potential health problem to terrify me, this would be the one. Losing the ability to talk, hear, walk, even see, all seem more manageable than this.

Sorry to be a bummer. I've just tried to be honest with my emotions at a time when I'm pretty low. I want to thank you all again for all the work you've done. You probably don't realize how many people are like me, not posting but reading all your words, learning from you, cheering on your victories. You affect more people than you know. Sometimes I'm grateful I know I'm ApoE 4/4, that maybe I can try to work harder to stave off Alzheimer's. But other times, for the amount of stress, grief and fear it's brought me, I wish I never knew my reality.
Welcome, William! Thank you for sharing your feelings so honestly. The uncertainty about your own future and concern for an aging parent that you're describing is something many of us have experienced intimately. I can't pretend that I have perfect answers about how to manage those emotions, but a couple of hopeful things struck me while reading your post.

First, you mention that you've worked a writer. I think you might get some solace in reading about The Nun Study (link: https://en.wikipedia.org/wiki/Nun_Study), if you haven't already. This is very interesting long-running observational research which found that high idea density showcased through one's writing during youth is protective against developing Alzheimer's symptoms as one ages, even in people whose brains show evidence of Alzheimer's pathology. As someone who values his intelligence and made a career out of the written word, I have no doubt that you have this on your side. And that goes to a larger point: little things we do in our lives - with no overt intention of staving off dementia, even! - can have an immense positive impact.

Second, you're ahead of the game! Remember, Dr. Bredesen recommends a "cognoscopy" at the age of 45. The fact that you know your 4/4 status and have made positive changes before you've even turned 40 gives you lots of time to work out a protocol that supports your own health and well-being. None of us is perfect, and we're all running N=1 studies with our own strengths and weaknesses.

Best of luck - I'm rooting for you!
William
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Re: Feel like my time is running out

Post by William »

JD2020 wrote: Wed Jul 17, 2024 5:14 pm
William wrote: Wed Jul 17, 2024 1:57 pm I became so overwhelmed with it all that I decided "Hey, I'm in my mid-30s, there's some distance here. I'm going to try to relax and put this out of my mind" and I largely did that. But now as I'm about to turn 40, all that distance feels gone.

I've read much of Dale Bredesen's End of Alzheimer's book that some recommend here. There is certainly a lot of smart sounding and encouraging advice there, but it also adds up to a ton of tests that I and many others simply can't afford or convince our doctors to order (I tried when I had a family doctor and they rejected the idea, and in the years since my doctor has left and as I live in a city with a serious shortage of physicians accepting patients, have not been able to even find any new doctor, let alone one open to this). Likewise, the diet changes and supplements: some I can implement, but for me and a lot of others, it is simply not affordable or feasible.

I don't ever imagine myself as in my 70s or 80s. I don't see it likely when I look at my family history and my genetics and my inability to be as vigilant as so many of you are in preventative measures.
William, hang in there. First of all, at 40, there is still a good deal of distance. A lot is going to change in the next years, you will see. Implement what you can. You have time to take small steps.

I also found the whole program absolutely overwhelming, and I am posting that so that you will know that you are not alone in what you feel. Implement what you can. As for cost, at 40, I would not have been able to afford this, period end of story. No, your regular doc can't help you with this. They don't get enough money from the insurance companies for the appointments to be able to do what they would need to do. Many probably haven't ever seen some of the tests that we take to identify our vulnerabilities. The doctors who do this don't take insurance. My first appointment with my ReCode doc was over 2 hours long....insurance does not pay for that! When you can afford it, get with an integrative doc who can help you identify where to focus your efforts. (blood sugar, inflammation, toxins, etc) Until then, focus on what you can address on your own.

Finally, it is ok to imagine yourself vibrant at 70 and 80. To circle back, a lot is going to change in the next years.
Thanks. Yeah, the doctor thing is tough. I think a lot of doctors are so deluged with work and know the labs are as well that the idea of preventative medicine that involves taking blood tests and tracking markers seems crazy to them. My last doctor, I asked for a blood workup with a lot of the things suggested to be tracked by Bredesen and my doc looked at me as I read some of them like I just asked him to count every hair on my head, haha. Just immediate no's to things that weren't basic common tests like cholesterol, blood cell counts, etc.

I think the thing that concerns me about things changing through the years with medicine is drug development/clearance takes a long time and so I don't see too many promising things in development at this point, and so even if something were to spring up, as we get older, the chances of it being available in time to help us gets lower. I'd be more optimistic if I was 20 rather than 40. Even something that seems to show some possible potential like ALZ-801, looking at the drug's website, just getting through testing for its use as a preventative measure will take maybe half a decade.

Plumster, thanks for wishing me luck and all the same to you!

Helen, thanks for all the links and taking the time out of your days to work the board like this. That's a real kindness.

lana_banana, I just read the Nun Study you linked and it's definitely interesting. It touches on things I've heard before about people with higher intelligence fairing better, even if their brains present signs of the disease. Sometimes if you start with more brain power/intelligence, you can take a hit. I know in sports where athletes are at risk of taking head trauma, they often will want to take a baseline test of their intelligence/reaction times so they have something to compare their scores after a concussion to: If you are just a very naturally intelligent person with great reflexes and awareness, brain trauma might just knock you down from great to good, and without knowing you started at great, people might not know you have a problem to begin with.
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Re: Feel like my time is running out

Post by TCHC »

William wrote: Wed Jul 17, 2024 1:57 pm Hi all. I've lurked here over the years but have never been active. I may have made an introductory post once years ago but, ironically, have forgotten.

I'm about to turn 40 in three weeks. I've known for years that I'm an ApoE 4/4 with an origin story that I know is incredibly common: I bought 23andMe tests for myself and someone else as a gift, got the 4/4 result and went down a rabbit hole figuring out what that even meant. It lines up in the sense that Alzheimer's is common on my Mom's side of the family. My great-grandmother and grandmother both had it, and while my ApoE 3/4 mother currently still has her marbles at the age of 68, I always worry about her.

I researched Alzheimer's and ApoE4 a fair bit when I found out (This site was a great resource and I thank you so much for that) and I became so overwhelmed with it all that I decided "Hey, I'm in my mid-30s, there's some distance here. I'm going to try to relax and put this out of my mind" and I largely did that. But now as I'm about to turn 40, all that distance feels gone. I know that probably sounds ridiculous to people reading this who are decades older than me, but knowing that Alzheimer's often starts developing long before it presents, and knowing I'm reaching the age where for all I know it's already started, terrifies me. I think about plaques starting to accumulate, I think about damage in my brain and decreased volume just slowly accumulating over time, and the idea of it starting now. I saw the study this year that pointed out 88 percent of the ApoE4 subjects involved had dementia, and by age 55 95 percent of ApoE 4/4s had biological markers of the disease, and while I know that study might not tell the whole story, and while markers of disease does not necessarily mean you have symptoms of dementia, it still frightens me.

Ever since I found out I was ApoE 4/4, I've been hypersensitive to changes in my mind. Is my memory getting worse? More brain fog? It feels that way. Is it all in my mind? Natural aging? Something more? I don't know. I am a person who really likes the comfort of certainty, so this whole situation is my nightmare. Not knowing if I'll get this and if so, not knowing when.

I feel hopeless. I've done a fair bit of research. I've read much of Dale Bredesen's End of Alzheimer's book that some recommend here. There is certainly a lot of smart sounding and encouraging advice there, but it also adds up to a ton of tests that I and many others simply can't afford or convince our doctors to order (I tried when I had a family doctor and they rejected the idea, and in the years since my doctor has left and as I live in a city with a serious shortage of physicians accepting patients, have not been able to even find any new doctor, let alone one open to this). Likewise, the diet changes and supplements: some I can implement, but for me and a lot of others, it is simply not affordable or feasible. I totally understand the merits of Dr.Bredesen's approach of trying to attack this from dozens of angles at once, to patch all these different holes in the walls to protect ourselves, but the sheer amount of requirements is overwhelming, and the fact that I can't come close to adopting them all is depressing.

I look at the coming medicine and even that doesn't seem uplifting. The recently approved drugs offer a marginal and debatable slowing of the disease, nothing more, and as an ApoE 4/4, my increased chances of severe side effects seem almost disqualifying. I know ALZ-801 has had somewhat promising results, but even that is based on a small sample and seems to be presented in a way designed to, understandably, paint their results in the best light. And the idea of that being tested as a preventative measure will take years, and who knows it'll bear fruit. Just more time ticking off the clock.

As I stand here about to turn 40, I am going to try things. Since discovering I was ApoE 4/4, I have lost weight and improved my diet, but I'm still overweight and my diet could still be better. I will address both of those things. I could do with more exercise. I'll address that as well. I'll try to add supplements where I can. I'm not going to ignore this anymore, even if that would bring me comfort. I don't think I could if I wanted to. Whenever I think about my future, there's always a ceiling now. When I think of myself in mid-50s and 60s, which doesn't seem very far away now, I know I can't assume my mind, my self, will still be there. It colors everything I think about and plan for when it comes to the future. I don't ever imagine myself as in my 70s or 80s. I don't see it likely when I look at my family history and my genetics and my inability to be as vigilant as so many of you are in preventative measures. I value my mind above everything. I've always been somewhat intelligent, I've always lived in my head. I've worked as a paid writer. If you could've picked a single potential health problem to terrify me, this would be the one. Losing the ability to talk, hear, walk, even see, all seem more manageable than this.

Sorry to be a bummer. I've just tried to be honest with my emotions at a time when I'm pretty low. I want to thank you all again for all the work you've done. You probably don't realize how many people are like me, not posting but reading all your words, learning from you, cheering on your victories. You affect more people than you know. Sometimes I'm grateful I know I'm ApoE 4/4, that maybe I can try to work harder to stave off Alzheimer's. But other times, for the amount of stress, grief and fear it's brought me, I wish I never knew my reality.
Hi William

Please don't despair. Take one tiny step at a time within your budget and then when you can afford more, you'll already be in a better position health wise.

If you can't afford the Re:CODE tests, try to get a doctor (I see you're even struggling with that) and see what kind of general overhaul type testing they will do for you and work on the results using natural approaches - there are plenty of people on here with the experience to advise. If you can afford Dr. Mark Hyman's Function testing at about $500, monthly plan available, that would be a start. https://www.functionhealth.com. If I lived in the US, I'd have had that already!

If you can't afford organic food, try to find a farmer's market if there are any near you.

If you can't afford a gym membership and saunas, walking is free, find some fun things to do that you'd enjoy.

If you can't afford expensive low toxin cleaning products, I personally do what I can with scalding hot water and a high quality microfibre cloth

If you can't afford organic personal care products or to cook from scratch, get the free YUKA app, test all your current packaged foods and personal care products and take its recommendations for any better products - there are lots out there that don't have to cost the earth.

And do it all just 1 tiny step at a time, so you can build up without it seeming too overwhelming.

I wish you all the very best of luck with it. And I'm sure we'd all love to hear how you're getting on from time to time.

Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
mike
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Re: Feel like my time is running out

Post by mike »

William wrote: Wed Jul 17, 2024 1:57 pm I look at the coming medicine and even that doesn't seem uplifting. The recently approved drugs offer a marginal and debatable slowing of the disease, nothing more, and as an ApoE 4/4, my increased chances of severe side effects seem almost disqualifying. I know ALZ-801 has had somewhat promising results, but even that is based on a small sample and seems to be presented in a way designed to, understandably, paint their results in the best light. And the idea of that being tested as a preventative measure will take years, and who knows it'll bear fruit. Just more time ticking off the clock.
William, welcome from another 4/4. Yes, 4/4s tend to be more likely to get AD, but you are wrong about the medicines soon to be available; ALZ-801 works to remove AB plaque, which is exactly what us 4's are unable to do well. It could be that they actually come up with a magic pill for 4s. But most folks who get AD are not 4/4s. The rest of AD is not genetic but rather life style issues. Your task is to protect your Blood Brain Barrier. Exercise is critical. Even a little helps. Up it a bit at a time. 4s are better able to utilize ketones in the brain for fuel than 3s. Thus the keto diet. You don't need to eliminate fruits and vegies, but you do want to lower carbs and raise fat intake. Eat blue berries rather than bananas and oranges. Eat only above ground vegies - no potatoes. This is a marathon. Do what you can do.
Sonoma Mike
4/4
laurie
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Re: Feel like my time is running out

Post by laurie »

William wrote: Wed Jul 17, 2024 1:57 pm
I feel hopeless.
Hi William, I can understand why you feel this way. My heart goes out to you.

It is stories like yours that motivates me to continue to share the evidenced based information I have learned about Alzheimer's and APOE 4. Alzheimer's can be prevented ! How can I confidently say that, let me explain ? My mother in law had late onset Alzheimer's and 12 years ago when my husband (Dennis N Crouse) learned there was no treatment being a scientist he started reading the research. What he learned shocked him but also brought him hope. Most importantly he was able to help his mother. She lived until the age of 97 and was not in endstage Alzheimer's when she died. She was APOE 3/4.

In case you haven't seen my posts in this forum here is more information.

My husband and I have a website, blogs on blogger, you tube channels and we have a presence on facebook. You need to know the cause of a disease before you can prevent or treat the disease. Aluminum which is a neurotoxin is the major cause of Alzheimer's and drinking silica rich mineral water (Fiji, Volvic or Acilis and more) removes the aluminum from the body including the brain. My husband has written 4 evidence based books and most of the information from the books are available on the internet. You can start by identifying sources of aluminum you are being exposed to and eliminate them. I will post a link. This week I will be uploading a video on APOE 4 to my you tube channel. Let me know if you have any questions. I am optimistic this information will bring your 'hope meter' up.

Our website: https://prevent-alzheimers-autism-stroke.com/

Link to my you tube channel sources of aluminum https://www.youtube.com/watch?v=rA0Ttn9_Scg&t=6s

sources of aluminum a list https://prevent-alzheimers-autism-strok ... -aluminum/

Laurie
Apoe 3/4

"True prevention is only possible by first discovering the cause of a disease such as Alzheimer's."
Dennis N Crouse
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