Welcome!!!

A primer for newbies and old pros alike.
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TheresaB
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Re: Welcome!!!

Post by TheresaB »

Rreyn1 wrote: Wed May 10, 2023 10:29 am I have not done genetic testing but am considering it. ...What are the ramifications of this knowledge...
Welcome to our community. For me, knowledge was life-changing for the positive because research is learning more and more every day and rather than being a "sitting duck" I feel I have some control over my health. But knowledge of APOE status is different in others.

We happen to have a write up that you should probably visit. Thinking About Testing?

I hope you make the decision that is right for you. Best to you.
-Theresa
ApoE 4/4
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NataliaReyn
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Re: Welcome!!!

Post by NataliaReyn »

Rreyn1 wrote: Wed May 10, 2023 10:29 am Hello. I am new here and have a question. I am not sure how to ask it or if there are things I should have been able to find here and somehow missed. I have not done genetic testing but am considering it. My mother (who I care for) has Alzheimer’s as did her brother and her mother. I am beginning to work toward the Bredesen protocol as I feel this might be my only hope. What are the ramifications of this knowledge other than it letting me be more committed to pro-activity? Do you know if you are required to divulge the info to insurance companies or any other unforeseen drawbacks to having this knowledge? Thank you in advance for any help you can give.
Welcome to our forums, Rreyn1!

Thank you so much for being here and sharing your story with us!
Since you are new here, I would love to share a few tools/resources to make your experience more enjoyable.
The Primer 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.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching.

If you are interested in learning more about other members check out Our Stories.
Two more tips to improve your experience here:
  • If you want to Search for posts on a specific topic, you can use the text box labeled "Search" right under your user name and enter those specific terms.
  • To be sure a forum member is notified of your post, just click use the large quotation mark icon in the upper right corner of they post.
To answer your question about testing, there is a very helpful page on our site Thinking About Testing? that you may find very informative and it may help you make a decision, including insurance concerns. I am sure that on our forums here you will find members who have been in similar situations.

Also, so sorry to hear about your mom going through this, but it's so good that she has you taking care of her. Having said that, being a caregiver is a stressful job, so hopefully you are taking care of yourself and have support. It is great that you are working on prevention and applying the Bredesen protocol. I know there are lots of pieces to that protocol and it can get overwhelming but even just taking small steps daily can add up in the end. This community is always here for you as well if you have any more questions.

Again, thank you for connecting with us here on the site and please do not hesitate to reach out.

Warmly,

Natalia
Functional Medicine Certified Health Coach
Bredesen Protocol Health Coach
Johnmark
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Re: Welcome!!!

Post by Johnmark »

I appreciate this website. My wife has the "double" Apoe4 and has a multi-generation history of Alzheimer's. She has been dealing with it personally since 2016. We have recently added the ReCode protocol and appreciate learning the tricks of the trade...
JennyR
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Re: Welcome!!!

Post by JennyR »

Johnmark wrote: Mon Dec 11, 2023 10:44 am I appreciate this website. My wife has the "double" Apoe4 and has a multi-generation history of Alzheimer's. She has been dealing with it personally since 2016. We have recently added the ReCode protocol and appreciate learning the tricks of the trade...
Hi Johnmark and welcome! I'm so glad you found the Forum and hope you know that we appreciate you being here and sharing a bit of your own story (and that of your wife). It sounds like you all have been through a lot--it takes courage to keep researching and learning new "tricks of the trade". As you've likely gathered, there is a great deal of info on the site. Much has been shared above but I will highlight a few pages as you're beginning to explore:
- The How-to-Guide includes practical navigation and formatting tips.
- Here is a link with tips for more advanced searching of the site. This may be helpful as you delve into ReCode as there are many hits on the topic!

It sounds like you are a thoughtful and supportive caregiver which must give your wife so much strength. I hope you are able to take care of yourself some, too, in the midst of all the caregiving! Please reach out here with any specific questions--you are not alone!

With love, in health,
Jenny
Functional Medicine Certified Health Coach (FMCHC)
National Board Certified Health and Wellness Coach (NBC-HWC)
MBA
ThomasB
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Re: Welcome!!!

Post by ThomasB »

Hello. I am in my 20s but learnt I am a 4/3 carrier a few years ago. I've been lurking in this forum for a while but decided to make an account after today's news.

I am less worried about my own health, as I am confident dementia will be less of a worry in 40 years (though I am still taking healthy steps!) than that of my parents. Obviously being 4/3 opens the possibility that one of my parents is 4/4.

My maternal grandmother had vascular dementia and it was quite traumatic for me, as did her mother. My paternal grandmother had AD although this was only diagnosed when she was very poorly (I think aged mid 80s). My paternal-paternal grandmother also had it. That's as far as I know.

I have quite bad health anxiety for which I am recieving CBT, but I also have a sort of proxy health anxiety. So whenever my mum (late 60s) forgets something my brain goes full DEFCON-1. I hope to learn positive steps from this forum.
JulieMorris
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Re: Welcome!!!

Post by JulieMorris »

ThomasB wrote: Tue May 07, 2024 11:01 am Hello. I am in my 20s but learnt I am a 4/3 carrier a few years ago. I've been lurking in this forum for a while but decided to make an account after today's news.

I am less worried about my own health, as I am confident dementia will be less of a worry in 40 years (though I am still taking healthy steps!) than that of my parents. Obviously being 4/3 opens the possibility that one of my parents is 4/4.

My maternal grandmother had vascular dementia and it was quite traumatic for me, as did her mother. My paternal grandmother had AD although this was only diagnosed when she was very poorly (I think aged mid 80s). My paternal-paternal grandmother also had it. That's as far as I know.

I have quite bad health anxiety for which I am recieving CBT, but I also have a sort of proxy health anxiety. So whenever my mum (late 60s) forgets something my brain goes full DEFCON-1. I hope to learn positive steps from this forum.
Hi ThomasB
Hello! I'm a support team intern, and I'd like to welcome you to this site! You have found a very supportive community here. Although we certainly don't mind those who read in the background, thanks for using your bravery to jump out into the open and introduce yourself. We are thrilled you have decided to post here! Thank you for your honesty and vulnerability in sharing part of your story with us.

My mother has mild cognitive impairment, so I can relate to the panic you may feel when your mother forgets something. With much education and prodding, I was eventually able to get her to a well-informed ReCODE provider, and I'm happy to report that she's doing much better after changing her diet, moving more, and challenging her brain.

There is a lot of great information on this site, so it would be a good idea to first take a look at our Primer. It is an incredible resource of information about the biochemistry of ApoE4. It also offers researched-based prevention strategies and was written by a practicing M.D. with ApoE4. Do not become overwhelmed with all the information. Sometimes it is best to slowly read through it, decide which section resonates with you, and focus on that area first. This might be useful in trying to decide which healthy changes to focus on for yourself, or, if she's willing, your mother.

The How-To Guide will help you learn how to navigate this site. It includes topics such as navigating the forum, private messaging, and searching.

You can find other members' experiences in Our Stories. Sometimes reading the stories of others helps us realize that we are not alone.

I'm so glad you have joined us on this site. Again, thanks so much for posting today. Please feel free to reach out anytime with questions or if you just need support. You are not alone. We are here for you.

Take care,
Julie
PhD in Speech-Language Pathology
Functional Medicine Certified Health Coach
Interested in all things brain-related
JulieMorris
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Joined: Fri Jan 12, 2024 10:47 am
Location: Oklahoma
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Re: Welcome!!!

Post by JulieMorris »

ThomasB wrote: Tue May 07, 2024 11:01 am Hello. I am in my 20s but learnt I am a 4/3 carrier a few years ago. I've been lurking in this forum for a while but decided to make an account after today's news.

I am less worried about my own health, as I am confident dementia will be less of a worry in 40 years (though I am still taking healthy steps!) than that of my parents. Obviously being 4/3 opens the possibility that one of my parents is 4/4.

My maternal grandmother had vascular dementia and it was quite traumatic for me, as did her mother. My paternal grandmother had AD although this was only diagnosed when she was very poorly (I think aged mid 80s). My paternal-paternal grandmother also had it. That's as far as I know.

I have quite bad health anxiety for which I am recieving CBT, but I also have a sort of proxy health anxiety. So whenever my mum (late 60s) forgets something my brain goes full DEFCON-1. I hope to learn positive steps from this forum.
Hello again, ThomasB -
I just wanted to add that it's far more likely that one of your parents has ApoE 3/3, which is carried by almost 75% of people with European ancestry, and the other has ApOE 3/4, which is almost 25%, than that one of them has ApoE 4/4 (which only 2% of the people have). This is true especially on your father's side, where he had a grandmother in her 80's who was diagnosed, so it's just as likely that she had some vascular issues (late-stage Alzheimer's) that people with ApoE 3/3 can also have or possibly some other issues that can cause dementia. Also, strokes were very common and often ignored in that generation and diabetes was rarely identified or treated.

You might also want to take a look at the discussion here, particularly Nancy's post:
Nancy

Let us know if you have questions,
Julie
PhD in Speech-Language Pathology
Functional Medicine Certified Health Coach
Interested in all things brain-related
tinepola
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Re: Welcome!!!

Post by tinepola »

Hello everyone,
I am new here, and very glad to have discovered this, since I am quite alone in this APOE4 quest. I am a 48 year old woman from Europe, and was diagnosed last year with APOE4/E4. I have a PhD in Biology and am currently supervising 11 PhD students and several MSc students, and coordinating two major project in Africa. I always had a sharp memory and fast mind, so I was thriving in my job. However, I am experiencing cognitive decline since a couple of years, forgetting stuff, problems finding the right words, difficulty to focus and concentrate (I feel 100% ADHD while I could focus so good previously), to speak fluently (especially in other languages), and this is really bothering me in my professional life, but also at home, since they need to repeat things to me and think I am simply not interested in what they say. But I am also in my perimenopause. I do not have the typical hot flushes, but am sleeping very badly, being warm and cold and warm again. Have strong headaches and estrogen going from 500 to 100 and back. I tried Zoely to keep this in check, but that made me very depressed and I gained 5kg so I stopped after 5 months. But I always have been an awful sleeper (cannot switch my mind off), and have been on sleeping medication for a few years after my divorce (and now try yoga nidra with a CBD+melatonine supplement). I also had 3 major surgeries for endometriosis, and battled with CMV and Epstein Barr (at some point they diagnosed me with ME, but luckily I could get better thanks to diet, supplements and exercise) and some tropical disease I contracted when doing fieldwork in Africa. And I had COVID twice and am now in my third episode. So my viral load is quite high unfortunately. And finally, I also had a lot of dental issues and gum infections, which I know is not good. Apart from that, there is Alzheimer in my family on both sides, and we could finally convince my mother to do a Montreal test soon (I had 24/30). I try to keep calm and focus on other things, but I can become very worried from time to time. My mind was/is my life, my profession. I am eating very healthy with lots of veggies, fibres, fermented food, etc, but I still have high LDL, triglycerides (like my mom). I started going to the fitness since january this year, and I have always been cycling and walking quite a lot, and yoga (nidra). But I don't know what I can do more. I started listening to podcasts, reading scientific papers, take some extra supplements that are advised, but it is so hard to know what is the right thing to do since everyone is different. Since I have endometriosis I can not simply do hormone replacement therapy, and it is so hard to find good doctors that have a holistic view. So I feel quite lonely with this, because my partner does not want to talk about this, he had his share with personal loss recently, and people around me do not even know what APOE4 is all about... So any advice or names of good doctors in Europe is welcome.
Lyre Taylor
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Posts: 55
Joined: Sat Jan 20, 2024 6:57 pm
Location: GEORGIA

Re: Welcome!!!

Post by Lyre Taylor »

tinepola wrote: Fri Jul 05, 2024 5:18 am Hello everyone,
I am new here, and very glad to have discovered this, since I am quite alone in this APOE4 quest. I am a 48 year old woman from Europe, and was diagnosed last year with APOE4/E4. I have a PhD in Biology and am currently supervising 11 PhD students and several MSc students, and coordinating two major project in Africa. I always had a sharp memory and fast mind, so I was thriving in my job. However, I am experiencing cognitive decline since a couple of years, forgetting stuff, problems finding the right words, difficulty to focus and concentrate (I feel 100% ADHD while I could focus so good previously), to speak fluently (especially in other languages), and this is really bothering me in my professional life, but also at home, since they need to repeat things to me and think I am simply not interested in what they say. But I am also in my perimenopause. I do not have the typical hot flushes, but am sleeping very badly, being warm and cold and warm again. Have strong headaches and estrogen going from 500 to 100 and back. I tried Zoely to keep this in check, but that made me very depressed and I gained 5kg so I stopped after 5 months. But I always have been an awful sleeper (cannot switch my mind off), and have been on sleeping medication for a few years after my divorce (and now try yoga nidra with a CBD+melatonine supplement). I also had 3 major surgeries for endometriosis, and battled with CMV and Epstein Barr (at some point they diagnosed me with ME, but luckily I could get better thanks to diet, supplements and exercise) and some tropical disease I contracted when doing fieldwork in Africa. And I had COVID twice and am now in my third episode. So my viral load is quite high unfortunately. And finally, I also had a lot of dental issues and gum infections, which I know is not good. Apart from that, there is Alzheimer in my family on both sides, and we could finally convince my mother to do a Montreal test soon (I had 24/30). I try to keep calm and focus on other things, but I can become very worried from time to time. My mind was/is my life, my profession. I am eating very healthy with lots of veggies, fibres, fermented food, etc, but I still have high LDL, triglycerides (like my mom). I started going to the fitness since january this year, and I have always been cycling and walking quite a lot, and yoga (nidra). But I don't know what I can do more. I started listening to podcasts, reading scientific papers, take some extra supplements that are advised, but it is so hard to know what is the right thing to do since everyone is different. Since I have endometriosis I can not simply do hormone replacement therapy, and it is so hard to find good doctors that have a holistic view. So I feel quite lonely with this, because my partner does not want to talk about this, he had his share with personal loss recently, and people around me do not even know what APOE4 is all about... So any advice or names of good doctors in Europe is welcome.
Hello and Welcome!
First and foremost, I want to assure you that you’re not alone. You’ve found a supportive community here. On this forum, we strive to learn and grow together, leaning on each other for support. I’ve noticed that you’ve been through a lot, but it’s inspiring to see how you continually seek lifestyle modifications to improve your health challenges. Like you, we firmly believe in the power of epigenetics—our genes are not our destiny!

If you haven't already checked out apoe4.info, as a Support Team Intern I'm happy to share several tools & resources to help you get the most out of your experience here. The Primer 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.

Some helpful tips to navigate the site include 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 a wealth of information. There is so much here that will help you as you continue to learn about lifestyle changes that can reverse symptoms.

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

Again, I am so glad you joined our forum. Stay positive and curious. Please feel free to reach out anytime.

Warmly,
Lyre
tinepola
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Joined: Mon Jul 01, 2024 9:12 am

Re: Welcome!!!

Post by tinepola »

Dear Lynn,
many thanks for the warm welcome, this feels very good. I will take my time to go through the site and I am sure I will find very similar stories (and possibly solutions or suggestions).
Much appreciated,
Tine
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