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Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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WendyK
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New member

Post by WendyK »

Hi all - I am new here, an almost 59 year old female. I found out I have one copy of the APOE4 gene, as determined by 23 and Me, 9 or 10 years ago. Since then, my father died, not from dementia but he did have dementia (not sure if it was Alzheimer's, as he was never officially diagnosed). My 83 year old mother is now declining cognitively, but likewise has not been diagnosed with anything specific. But I can tell by her behavior that this isn't just "getting old." She has refused to see a neuropsychologist who would administer cognitive tests. So I don't know which parent carried the APOE4 gene. There is a considerable amount of heart disease on my father's side with early heart attacks. I was tested for Lp(a) and tested positive but the value is low. I had high cholesterol in my 20's and due to my family history, started on a statin when I was 30. My numbers are great, and I've had two calcium CT scans of my heart and both times got a zero score. Thanks, statins and early intervention with a heart healthy diet and steady exercise! I also recently had an elevated A1C and have brought that down by giving up sugar (I still eat fruit) and upping the exercise. So I think I'm doing all I can do in the lifestyle department. But I'm still not sure how people who aren't 4/4 are finding out what the other parent contributed in the APOE department. Couldn't find that on 23 and Me and maybe they didn't test for it. Any other advice would be greatly appreciated. Thanks to all for sharing their stories!
Lyre Taylor
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Re: New member

Post by Lyre Taylor »

WendyK wrote: Sat Jul 06, 2024 3:14 pm Hi all - I am new here, an almost 59 year old female. I found out I have one copy of the APOE4 gene, as determined by 23 and Me, 9 or 10 years ago. Since then, my father died, not from dementia but he did have dementia (not sure if it was Alzheimer's, as he was never officially diagnosed). My 83 year old mother is now declining cognitively, but likewise has not been diagnosed with anything specific. But I can tell by her behavior that this isn't just "getting old." She has refused to see a neuropsychologist who would administer cognitive tests. So I don't know which parent carried the APOE4 gene. There is a considerable amount of heart disease on my father's side with early heart attacks. I was tested for Lp(a) and tested positive but the value is low. I had high cholesterol in my 20's and due to my family history, started on a statin when I was 30. My numbers are great, and I've had two calcium CT scans of my heart and both times got a zero score. Thanks, statins and early intervention with a heart healthy diet and steady exercise! I also recently had an elevated A1C and have brought that down by giving up sugar (I still eat fruit) and upping the exercise. So I think I'm doing all I can do in the lifestyle department. But I'm still not sure how people who aren't 4/4 are finding out what the other parent contributed in the APOE department. Couldn't find that on 23 and Me and maybe they didn't test for it. Any other advice would be greatly appreciated. Thanks to all for sharing their stories!
Hello and welcome!
I’m glad you’ve found our site. I’m truly sorry for the loss of your dad; losing a parent is incredibly difficult. I can imagine that watching your mom’s cognitive decline is equally challenging. I commend you for taking charge of your own health challenges and making adjustments to your lifestyle and diet. You have found a supportive community here with like-minded members. Together, we’re all striving to learn how best to prevent Alzheimer’s disease.

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.

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
NF52
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Re: New member

Post by NF52 »

WendyK wrote: Sat Jul 06, 2024 3:14 pm Hi all - I am new here, an almost 59 year old female. I found out I have one copy of the APOE4 gene, as determined by 23 and Me, 9 or 10 years ago.....
But I'm still not sure how people who aren't 4/4 are finding out what the other parent contributed in the APOE department. Couldn't find that on 23 and Me and maybe they didn't test for it. Any other advice would be greatly appreciated. Thanks to all for sharing their stories!
Hi Wendy,

I found out my Apoe 4/4 status from 23&me about 10 years ago also. Since you're asking what the other parent gave you that wasn't ApoE4, here's my suggestions:
  • Enter each of these two recommended SNPs: rs429358 and rs7412 on the browse raw data page and write down the results, for example (C/C), or (C/T), or (T/T).
Use this chart from https://www.snpedia.com/index.php/APOE and match what you found for each SNP. Someone with ApoE 3/4 will usually have (C/C) under rs429358 and (C;C). If you're not sure, you can just post what your results were for the SNPs.

It helps to remember that even if you are ApoE 3/4, it's possible that each of your parents was also ApoE 3/4, and you happened to get an ApoE 3 from one and an ApoE 4 from the other. Your mother is only showing signs at age 83 which means she has a very resilient brain and heart, since she's also outlived many of her contemporaries. Many people in their 80's with signs of cognitive change are fairly stable and live with them with support, eventually dying from other causes. She may strongly value NOT being tested for the gene or for her cognition--which can be stressful even for those of us without cognitive impairment, and can cause tears and sadness in those who are experiencing issues.

You have the gifts of both knowledge and time on your side. Enjoy them both!

Nancy (age 72 and doing well with ApoE 4/4)
4/4 and still an optimist!
WendyK
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Re: New member

Post by WendyK »

Thank you, Nancy, for taking to time to share that! Both my parents started to show signs around age 80, though it's hard to know if they started sooner because both are (were) good at hiding the decline! But point taken about my mother not wanting to attach a name to what she's experiencing. She chalks it up to "This happens when you get old." I think the tough part is knowing that with both parents having dementia and having a gene means I stand a decent chance of ending up that way, too, and seeing it -- and all that goes with it -- in someone else just makes it less abstract -- I know how the story will go. But I have taken better care of myself than both parents, and hopefully that helps.
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floramaria
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Re: New member

Post by floramaria »

WendyK wrote: Sat Jul 06, 2024 3:14 pm My numbers are great, and I've had two calcium CT scans of my heart and both times got a zero score. Thanks, statins and early intervention with a heart healthy diet and steady exercise! I also recently had an elevated A1C and have brought that down by giving up sugar (I still eat fruit) and upping the exercise. So I think I'm doing all I can do in the lifestyle department. But I'm still not sure how people who aren't 4/4 are finding out what the other parent contributed in the APOE department. Couldn't find that on 23 and Me and maybe they didn't test for it. Any other advice would be greatly appreciated. Thanks to all for sharing their stories!
Congratulations on all of the positive steps you have taken for your health, with a healthy diet and increased exercise. It is great that you’ve been able to bring down your A1c and that you have zero score on your calcium CT scan!

Here’s some “other advice”:
~Be sure you are optimizing your sleep.
~Do everything you can to avoid exposure to toxins. I mention this because it is easy to overlook the risks toxins pose. For me, though I led a generally healthy lifestyle, this was one of my mistakes. As an artist, I was cavalier about my exposure to heavy metal based pigments. The result was that I had high levels of both lead and cadmium. Through extensive detoxification, I was able to remove the toxic metals, but looking back, avoiding the exposure would have been the easier path.

Because of your genetics, you see yourself as having a decent chance of ending up with cognitive issues like those you see in your parents. Consider this, though~
You’ve already said that you have a healthier lifestyle than either of your parents. So you also have a decent chance of not ending up with cognitive decline. We are seeing more and more evidence of the power of lifestyle to offset genetic risk.
Best wishes to you!
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
Dany_ele
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Re: New member

Post by Dany_ele »

WendyK wrote: Sat Jul 06, 2024 3:14 pm Hi all - I am new here, an almost 59 year old female. I found out I have one copy of the APOE4 gene, as determined by 23 and Me, 9 or 10 years ago. Since then, my father died, not from dementia but he did have dementia (not sure if it was Alzheimer's, as he was never officially diagnosed). My 83 year old mother is now declining cognitively, but likewise has not been diagnosed with anything specific. But I can tell by her behavior that this isn't just "getting old." She has refused to see a neuropsychologist who would administer cognitive tests. So I don't know which parent carried the APOE4 gene. There is a considerable amount of heart disease on my father's side with early heart attacks. I was tested for Lp(a) and tested positive but the value is low. I had high cholesterol in my 20's and due to my family history, started on a statin when I was 30. My numbers are great, and I've had two calcium CT scans of my heart and both times got a zero score. Thanks, statins and early intervention with a heart healthy diet and steady exercise! I also recently had an elevated A1C and have brought that down by giving up sugar (I still eat fruit) and upping the exercise. So I think I'm doing all I can do in the lifestyle department. But I'm still not sure how people who aren't 4/4 are finding out what the other parent contributed in the APOE department. Couldn't find that on 23 and Me and maybe they didn't test for it. Any other advice would be greatly appreciated. Thanks to all for sharing their stories!
Hey WendyK, welcome to the community! I'm so impressed by how proactive you've been with your health, especially given your family history. It's amazing that you've been able to bring down your A1C levels just by cutting out sugar and upping your exercise game!

I'm curious, have you considered talking to a genetic counselor to help figure out which parent passed on the APOE4 gene? I'm not sure if 23andMe tests for that specifically, but it might be worth exploring.
WendyK
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Re: New member

Post by WendyK »

I haven't considered genetic counseling. I found out by accident about my single variant of APOE4 -- I wasn't seeking that information on 23 and Me and didn't even know it existed (this is 9 or so years ago). I've heard that they now give you a warning (before you read this, know that it's sensitive information, etc....). When I found out, they didn't have that. I'm not sure if it's really helpful to know more. As you mentioned, I take pretty good care of myself and know that there are some things out of my control. I've always assumed it was my father since there is one other person on his side that had Alzheimer's, and many had heart disease and died young. Is genetic counseling something you've done?
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