Anxiety

[NikiB]

I came to grips with my 4/4 gene makeup and sort of placed it on the back burner and forgot about it. I came across something recently that said the risk of earlier onset is higher and that we have an up to 90% risk of developing AD. My youngest children are 4 and 6 (I’m 47) and I’m beside myself with grief and worry over losing my mind. Can someone talk me dow?? I feel like AD is inevitable and that my children are going to lose me sooner rather than later. I am 5’5”, 120 lbs, work out regularly, meditate and try and get 8 hours of sleep but I’m in fight/flight/freeze 80% of the time because I also have chronic anxiety. I’m a mental health therapist and have done tons of my own work. Please help/


Sent from my iPhone using Tapatalk

[floramaria]

I came to grips with my 4/4 gene makeup and sort of placed it on the back burner and forgot about it. I came across something recently that said the risk of earlier onset is higher and that we have an up to 90% risk of developing AD. My youngest children are 4 and 6 (I’m 47) and I’m beside myself with grief and worry over losing my mind. Can someone talk me dow?? I feel like AD is inevitable and that my children are going to lose me sooner rather than later. I am 5’5”, 120 lbs, work out regularly, meditate and try and get 8 hours of sleep but I’m in fight/flight/freeze 80% of the time because I also have chronic anxiety. I’m a mental health therapist and have done tons of my own work. Please help/

Dear NikiB, my heart goes out to you for the grief and worry you are experiencing. You certainly came across a bleak version of what the future holds for ApoE4 carriers. In this community which you have joined, there is strong, evidence-based belief that genes are not destiny. AD is NOT inevitable. Far from it! We have many ApoE4/4 members who are still doing great in their 60’s,70’s, and 80’s. While you can’t change your genetics, there are many modifiable lifestyle factors that you have complete control over. From what you have written, you are already on the right path, with your workouts meditation and good sleep. You might start by checking out the Primer which will help you to prioritize more steps you can take now to reduce the risks associated with the ApoE4 allele.
It is a comprehensive guide written by a physician member and is full of helpful information.
You could also check out The End Of Alzheimer’s by Dr Dale Bredesen. Many of us here are following his protocol or an adapted version of it.
Meanwhile, I send you a hug across the miles!

[NF52]

I came to grips with my 4/4 gene makeup and sort of placed it on the back burner and forgot about it. I came across something recently that said the risk of earlier onset is higher and that we have an up to 90% risk of developing AD. My youngest children are 4 and 6 (I’m 47) and I’m beside myself with grief and worry over losing my mind. Can someone talk me dow?? I feel like AD is inevitable and that my children are going to lose me sooner rather than later. I am 5’5”, 120 lbs, work out regularly, meditate and try and get 8 hours of sleep but I’m in fight/flight/freeze 80% of the time because I also have chronic anxiety. I’m a mental health therapist and have done tons of my own work. Please help/

Welcome back, NikiB!

I'm so glad you came back to the forum! You are a valued member of our community--and as someone who welcomed you back in January 2019, I feel like I am at least a distant genetic ApoE 4/4 relative (Scots/English/GermanAustrian heritage covers a lot of European ancestors!)

First, let me assure you that your concerns are heard, and your feelings validated. It can be very difficult to feel that you are dealing with grief and worry over something that most people don't even know about, much less worry about at your age. In fact, only about 2% of people world-wide have ApoE 4/4--and I include myself among that number.

The good news is that more and more people have found out their ApoE 4/4 status and enrolled in studies following people in their 60's, 70's and even 80's. These recent studies, and sophisticated epidemiological analyses of population groups followed for decades, shows that the 90% risk you saw is just not accurate. Feel free to post the source if you have it; I'd be curious to see who is using that. My experience is it's often someone with a product to sell who is using scare tactics.

I get to work with researchers both as a volunteer participant in the Alzheimer's Clinical Trial Consortium Participant Advisory Board and a Consumer Reviewer on the Peer-Reviewed Alzheimer's Research Panel--both of which are exciting ways to realize how far our understanding has come in just a few years. Alzheimer's is now understood as a heterogeneous disease--meaning there are lots of upstream events that have to come together to lead to Mild Cognitive Impairment and later Alzheimer's disease. When someone tells you that their grandmother and great-grandmother died of Alzheimer's in their late 80's or 90's, for example, it almost certainly was either vascular dementia, caused in part by high blood pressure or heart disease, or mixed dementia of both vascular and Alzheimer's type.

Similarly, very few people in their 50's are diagnosed with Alzheimer's dementia, and most have one or more of rare mutations other than ApoE 4 and a strong family history of "young-onset" AD or had heavy exposure to one or more toxins. I know of someone who spent decades in toxic factories as part of his job who was diagnosed in his early 50's, but is doing well in a clinical trial of aducanumab. As the daughter of a wonderful father who died of cardiac arrest at age 67 with poorly understood diabetes and heart disease and at least one copy of ApOE 4, I and my three siblings have all lived past that age with no diabetes or heart disease (and with a coronary calcium "heart age" of 39 two years ago for me). At your age I was also anxious and far from the ideal weight and exercise and meditation habits you have--so it's not like I planned out my life perfectly for someone with ApoE 4/4 !

I will be 69 in a few months. In September 2019 I passed an array of daily living skill questionnaires, memory, verbal and visual-perceptual tests as part of the Generation clinical trial that enrolled literally thousands of cognitively healthy people with ApoE 4/4 ages 60-75. I know of at least a dozen other women and men with ApoE 4/4 ages 60-79, including a sitting judge who is fluent in three languages, a law school professor and editor of a recent textbook, a recently retired national Advanced Placement rater, a state-appointed ombudsman for assisted living centers and a former chief financial officer for a multi-national company who now serves at the treasure of a regional non-profit in a major city. Several organize activities to entertain active grandchildren weekly, compete in bridge tournaments, meet with church groups, political leaders and voters to support causes important to them and to advocate for Alzheimer's research.

So here's some important and current information:

ApoE4/4 is a risk for late-onset, sporadic Alzheimer's disease as well as vascular dementia and heart disease--that's risk, not dominant gene. It is far from inevitable. Here's the peer-reviewed 2017 results of an in-depth meta-analysis of three large population-based groups and one multi-clinic group: APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

The Generation Study elected to disclose the following “lifetime” [to age 85] risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). for APOE-e4/e4 homozygotes, the adjusted relative risk for [mild cognitive impairment]/dementia... of about 3-fold compared to the general population would make sense.

A risk of mild cognitive impairment by the age of 85 of 30-55% means that you have a 45-70% chance of being just fine if nothing further were discovered in the next 40 years!

You WILL be around to see those children become adults !! Ask anyone if they had Pandemic face mask on their 2020 shopping list, and you'll see how bad we are at predicting the future. But we also over-estimate the risk of bad things happening to us personally. You can take the word of lots of Alzheimer's researchers that between the kind of prevention efforts you have made, and your high education level (cognitive reserve in spades!) you should be confident that you have many years to enjoy your career and your family.

[NikiB]

I came to grips with my 4/4 gene makeup and sort of placed it on the back burner and forgot about it. I came across something recently that said the risk of earlier onset is higher and that we have an up to 90% risk of developing AD. My youngest children are 4 and 6 (I’m 47) and I’m beside myself with grief and worry over losing my mind. Can someone talk me dow?? I feel like AD is inevitable and that my children are going to lose me sooner rather than later. I am 5’5”, 120 lbs, work out regularly, meditate and try and get 8 hours of sleep but I’m in fight/flight/freeze 80% of the time because I also have chronic anxiety. I’m a mental health therapist and have done tons of my own work. Please help/

Welcome back, NikiB!

I'm so glad you came back to the forum! You are a valued member of our community--and as someone who welcomed you back in January 2019, I feel like I am at least a distant genetic ApoE 4/4 relative (Scots/English/GermanAustrian heritage covers a lot of European ancestors!)

First, let me assure you that your concerns are heard, and your feelings validated. It can be very difficult to feel that you are dealing with grief and worry over something that most people don't even know about, much less worry about at your age. In fact, only about 2% of people world-wide have ApoE 4/4--and I include myself among that number.

The good news is that more and more people have found out their ApoE 4/4 status and enrolled in studies following people in their 60's, 70's and even 80's. These recent studies, and sophisticated epidemiological analyses of population groups followed for decades, shows that the 90% risk you saw is just not accurate. Feel free to post the source if you have it; I'd be curious to see who is using that. My experience is it's often someone with a product to sell who is using scare tactics.

I get to work with researchers both as a volunteer participant in the Alzheimer's Clinical Trial Consortium Participant Advisory Board and a Consumer Reviewer on the Peer-Reviewed Alzheimer's Research Panel--both of which are exciting ways to realize how far our understanding has come in just a few years. Alzheimer's is now understood as a heterogeneous disease--meaning there are lots of upstream events that have to come together to lead to Mild Cognitive Impairment and later Alzheimer's disease. When someone tells you that their grandmother and great-grandmother died of Alzheimer's in their late 80's or 90's, for example, it almost certainly was either vascular dementia, caused in part by high blood pressure or heart disease, or mixed dementia of both vascular and Alzheimer's type.

Similarly, very few people in their 50's are diagnosed with Alzheimer's dementia, and most have one or more of rare mutations other than ApoE 4 and a strong family history of "young-onset" AD or had heavy exposure to one or more toxins. I know of someone who spent decades in toxic factories as part of his job who was diagnosed in his early 50's, but is doing well in a clinical trial of aducanumab. As the daughter of a wonderful father who died of cardiac arrest at age 67 with poorly understood diabetes and heart disease and at least one copy of ApOE 4, I and my three siblings have all lived past that age with no diabetes or heart disease (and with a coronary calcium "heart age" of 39 two years ago for me). At your age I was also anxious and far from the ideal weight and exercise and meditation habits you have--so it's not like I planned out my life perfectly for someone with ApoE 4/4 !

I will be 69 in a few months. In September 2019 I passed an array of daily living skill questionnaires, memory, verbal and visual-perceptual tests as part of the Generation clinical trial that enrolled literally thousands of cognitively healthy people with ApoE 4/4 ages 60-75. I know of at least a dozen other women and men with ApoE 4/4 ages 60-79, including a sitting judge who is fluent in three languages, a law school professor and editor of a recent textbook, a recently retired national Advanced Placement rater, a state-appointed ombudsman for assisted living centers and a former chief financial officer for a multi-national company who now serves at the treasure of a regional non-profit in a major city. Several organize activities to entertain active grandchildren weekly, compete in bridge tournaments, meet with church groups, political leaders and voters to support causes important to them and to advocate for Alzheimer's research.

So here's some important and current information:

ApoE4/4 is a risk for late-onset, sporadic Alzheimer's disease as well as vascular dementia and heart disease--that's risk, not dominant gene. It is far from inevitable. Here's the peer-reviewed 2017 results of an in-depth meta-analysis of three large population-based groups and one multi-clinic group: APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

The Generation Study elected to disclose the following “lifetime” [to age 85] risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). for APOE-e4/e4 homozygotes, the adjusted relative risk for [mild cognitive impairment]/dementia... of about 3-fold compared to the general population would make sense.

A risk of mild cognitive impairment by the age of 85 of 30-55% means that you have a 45-70% chance of being just fine if nothing further were discovered in the next 40 years!

You WILL be around to see those children become adults !! Ask anyone if they had Pandemic face mask on their 2020 shopping list, and you'll see how bad we are at predicting the future. But we also over-estimate the risk of bad things happening to us personally. You can take the word of lots of Alzheimer's researchers that between the kind of prevention efforts you have made, and your high education level (cognitive reserve in spades!) you should be confident that you have many years to enjoy your career and your family.

I could just cry tears of joy. Thank you, thank you, from the bottom of my heart.


Sent from my iPhone using Tapatalk

[NikiB]

I came to grips with my 4/4 gene makeup and sort of placed it on the back burner and forgot about it. I came across something recently that said the risk of earlier onset is higher and that we have an up to 90% risk of developing AD. My youngest children are 4 and 6 (I’m 47) and I’m beside myself with grief and worry over losing my mind. Can someone talk me dow?? I feel like AD is inevitable and that my children are going to lose me sooner rather than later. I am 5’5”, 120 lbs, work out regularly, meditate and try and get 8 hours of sleep but I’m in fight/flight/freeze 80% of the time because I also have chronic anxiety. I’m a mental health therapist and have done tons of my own work. Please help/

Dear NikiB, my heart goes out to you for the grief and worry you are experiencing. You certainly came across a bleak version of what the future holds for ApoE4 carriers. In this community which you have joined, there is strong, evidence-based belief that genes are not destiny. AD is NOT inevitable. Far from it! We have many ApoE4/4 members who are still doing great in their 60’s,70’s, and 80’s. While you can’t change your genetics, there are many modifiable lifestyle factors that you have complete control over. From what you have written, you are already on the right path, with your workouts meditation and good sleep. You might start by checking out the Primer which will help you to prioritize more steps you can take now to reduce the risks associated with the ApoE4 allele.
It is a comprehensive guide written by a physician member and is full of helpful information.
You could also check out The End Of Alzheimer’s by Dr Dale Bredesen. Many of us here are following his protocol or an adapted version of it.
Meanwhile, I send you a hug across the miles!

Thank you so much. You made my day. Bless you.


Sent from my iPhone using Tapatalk