Introducing myself

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Post Reply
User avatar
gena
Contributor
Contributor
Posts: 15
Joined: Sun Dec 25, 2022 7:18 pm

Introducing myself

Post by gena »

Hi, I’m new to knowing my apoE 3/4 status and what that means and also new to this incredible site. My 81 year old mother was formally diagnosed with Alzheimer’s and vascular dementia in December which brought me here. When she was first diagnosed with dementia five years ago, the neurologist said she had alcohol-induced dementia, so this new, more specific diagnosis was a change. Two weeks ago we received her apoE 3/3 results, and a week later mine revealed I’m a 3/4, which was actually a surprise as there is no one I’m aware of who has or had it in my family other than my mother. My 87 year old father does not have AD, though I obviously inherited my 4 from him. Neither of his parents lived past 70 and had no AD signs, so though heart disease was on his side, I never thought about AD. I am now taking a crash course on what I can do to take control and learning every day.
Thank you to each and every person who has posted book recommendations, research studies, personal stories, and labwork details and explanations over the past decade. There is so much here, and I am making my way through it and taking action. I just turned 60, and while I wish I realized my genetic risk years ago, I’m glad to know now so I can make changes where necessary.
Gena 3/4
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Introducing myself

Post by NF52 »

gena wrote: Fri Jan 20, 2023 6:24 pm Hi, I’m new to knowing my apoE 3/4 status and what that means and also new to this incredible site. My 81 year old mother was formally diagnosed with Alzheimer’s and vascular dementia in December which brought me here. When she was first diagnosed with dementia five years ago, the neurologist said she had alcohol-induced dementia, so this new, more specific diagnosis was a change. Two weeks ago we received her apoE 3/3 results, and a week later mine revealed I’m a 3/4, which was actually a surprise as there is no one I’m aware of who has or had it in my family other than my mother. My 87 year old father does not have AD, though I obviously inherited my 4 from him. Neither of his parents lived past 70 and had no AD signs, so though heart disease was on his side, I never thought about AD. I am now taking a crash course on what I can do to take control and learning every day.
Thank you to each and every person who has posted book recommendations, research studies, personal stories, and labwork details and explanations over the past decade. There is so much here, and I am making my way through it and taking action. I just turned 60, and while I wish I realized my genetic risk years ago, I’m glad to know now so I can make changes where necessary.
Hi gena,

I'm so glad you found and joined this community! You've been dealing with lots of new information that may change how you view your mother's personal and medical history and how you view your own future. Please give yourself permission to ride a rollercoaster of emotions for a while. Some of us have days when we wish we had never learned this and then feel that we are ready to completely revamp our lives. Most of us end up somewhere in between those two feelings and make decisions that are right for us.

And learning this at age 60 has some real advantages! You bring all the experience and wisdom of your life so far to dealing with this latest challenge and have the benefit of time to apply what you decide will work for you. You and I have a lot in common: I discovered my ApoE 4/4 status when I was 61 and like you, my mother had Alzheimer's and vascular dementia, probably due uncontrolled high blood pressure and heart disease. You and I only have 50% of our mother's genes (I definitely didn't inherit her musical ability) and we've lived very different lives than they did.

It's wonderful sign that your 87 year old dad is doing fine; since people who make it past 80 with ApoE 4 appear to have no increased risk over those without it. A very large analysis of four population cohorts followed for many years was done for a clinical trial of healthy people with ApoE 4. They found in 2017 that people with ApoE 3/4 who live to 85 have only a 20-25% chance of a diagnosis of either mild cognitive impairment (MCI) or Alzheimer's.
[We] elected to disclose the following “lifetime” risks of MCI or dementia...: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/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).
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

Since that risk was for people closer to my age of 70 than your age, and since it includes people who have a range of other health factors, you can plan to be someone who enjoys their 85th birthday and then makes plans for the 90th.
You may have found lots of our resources already, but here's some guides if you need them.

The Primer is written by Stavia, a practicing M.D. with ApoE4/4. It's a great place to see some strategies that you can consider--and she also recommends not trying to re-tool your entire life at once!

The How-To Guide shows how to quote members (use the " icon in the upper right of any post) so they get an email notification of your post. It also shows how to use the Search function for topics. You can search any topic by using the box under your username in the upper right hand corner of every page.

Here's a link from our Wiki on Research, with a 2018 article on strategies for AD prevention in ApoE 4 carriers from Dr. Richard Isaacson, the Director of the Alzheimer's Prevention Program at Cornell Weill Medical Center in NYC: Clinical Application of APOE in Alzheimer’s Prevention: A Precision Medicine Approach Here's his top recommendation from the article:
Physical activity: A systematic review of 16 prospective studies concluded that physical activity decreased the risk of developing AD by 45%. Aerobic activity was associated with greater cognitive performance for ε4 carriers compared to non-carriers.
We hope you enjoy browsing and jump into any conversation at any time. Feel free to post new topics with questions that come up, if a Search doesn't help.

Warmly,

Nancy
4/4 and still an optimist!
User avatar
gena
Contributor
Contributor
Posts: 15
Joined: Sun Dec 25, 2022 7:18 pm

Re: Introducing myself

Post by gena »

NF52 wrote: Sat Jan 21, 2023 4:20 pm
gena wrote: Fri Jan 20, 2023 6:24 pm Hi, I’m new to knowing my apoE 3/4 status and what that means and also new to this incredible site. My 81 year old mother was formally diagnosed with Alzheimer’s and vascular dementia in December which brought me here. When she was first diagnosed with dementia five years ago, the neurologist said she had alcohol-induced dementia, so this new, more specific diagnosis was a change. Two weeks ago we received her apoE 3/3 results, and a week later mine revealed I’m a 3/4, which was actually a surprise as there is no one I’m aware of who has or had it in my family other than my mother. My 87 year old father does not have AD, though I obviously inherited my 4 from him. Neither of his parents lived past 70 and had no AD signs, so though heart disease was on his side, I never thought about AD. I am now taking a crash course on what I can do to take control and learning every day.
Thank you to each and every person who has posted book recommendations, research studies, personal stories, and labwork details and explanations over the past decade. There is so much here, and I am making my way through it and taking action. I just turned 60, and while I wish I realized my genetic risk years ago, I’m glad to know now so I can make changes where necessary.
Hi gena,

I'm so glad you found and joined this community! You've been dealing with lots of new information that may change how you view your mother's personal and medical history and how you view your own future. Please give yourself permission to ride a rollercoaster of emotions for a while. Some of us have days when we wish we had never learned this and then feel that we are ready to completely revamp our lives. Most of us end up somewhere in between those two feelings and make decisions that are right for us.

And learning this at age 60 has some real advantages! You bring all the experience and wisdom of your life so far to dealing with this latest challenge and have the benefit of time to apply what you decide will work for you. You and I have a lot in common: I discovered my ApoE 4/4 status when I was 61 and like you, my mother had Alzheimer's and vascular dementia, probably due uncontrolled high blood pressure and heart disease. You and I only have 50% of our mother's genes (I definitely didn't inherit her musical ability) and we've lived very different lives than they did.

It's wonderful sign that your 87 year old dad is doing fine; since people who make it past 80 with ApoE 4 appear to have no increased risk over those without it. A very large analysis of four population cohorts followed for many years was done for a clinical trial of healthy people with ApoE 4. They found in 2017 that people with ApoE 3/4 who live to 85 have only a 20-25% chance of a diagnosis of either mild cognitive impairment (MCI) or Alzheimer's.
[We] elected to disclose the following “lifetime” risks of MCI or dementia...: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/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).
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

Since that risk was for people closer to my age of 70 than your age, and since it includes people who have a range of other health factors, you can plan to be someone who enjoys their 85th birthday and then makes plans for the 90th.
You may have found lots of our resources already, but here's some guides if you need them.

The Primer is written by Stavia, a practicing M.D. with ApoE4/4. It's a great place to see some strategies that you can consider--and she also recommends not trying to re-tool your entire life at once!

The How-To Guide shows how to quote members (use the " icon in the upper right of any post) so they get an email notification of your post. It also shows how to use the Search function for topics. You can search any topic by using the box under your username in the upper right hand corner of every page.

Here's a link from our Wiki on Research, with a 2018 article on strategies for AD prevention in ApoE 4 carriers from Dr. Richard Isaacson, the Director of the Alzheimer's Prevention Program at Cornell Weill Medical Center in NYC: Clinical Application of APOE in Alzheimer’s Prevention: A Precision Medicine Approach Here's his top recommendation from the article:
Physical activity: A systematic review of 16 prospective studies concluded that physical activity decreased the risk of developing AD by 45%. Aerobic activity was associated with greater cognitive performance for ε4 carriers compared to non-carriers.
We hope you enjoy browsing and jump into any conversation at any time. Feel free to post new topics with questions that come up, if a Search doesn't help.

Warmly,

Nancy
Nancy-Thank you so much for the warm welcome and the information! We do have a lot in common. You're also right about us living very different lives than our mothers. Very true.
I appreciate the reminder about the importance of daily physical activity and the encouraging statistics about making it to 80 and 85 without AD. I have so many research studies' statistics and other stats running around in my head, I forget some of the key takeaways that I need to remember. As for cardio-- time for myself with daily walks is one of my top goals. The statistics about its importance are encouraging and very motivating. I love walking, but making the time and sticking with my routine is a weak spot and one I'm working on.
Thanks again,
Gena
Gena 3/4
Post Reply