New member deciding whether to test

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
jt2005
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New member deciding whether to test

Post by jt2005 »

Hello,

I'm a 45 yo female, married with a teen daughter. My parents recently did the 23andMe tests and my mom tested e4/e4. This was not that surprising as she started having memory issues beginning around age 58 and was finally was diagnosed with AD via MRI 3 years ago at age 69 - don't know why it took so long. She is now 72 and not sure what stage she's in but she's starting to forget who people are, including my dad, her caretaker, albeit temporarily at this point. She's really started to go downhill just in the past year. I thought because she started showing signs in her late 50s that she possibly had early-onset AD but my dad says no, that she would have progressed much more quickly if that was the case. Do early-onset AD patients also have the APOE gene or is it different?

My father was negative for all APOE variants. I am trying to decide whether to get tested. Genetically speaking, if my mom is an e4/e4, does that mean I will have at least 1 copy of the gene? And since she's an e4/e4, is it true that both her parents had at least 1 copy of e4? They both died of strokes, my grandmother at age 47 and my grandfather at age 78 - and neither of them never showed any symptoms of cognitive decline to my knowledge.

I am predisposed to moderate and sometimes severe anxiety so I'm worried about the downward spiral of finding out if have 1 or 2 copies of e4. On the flip side, if I didn't have it, it would be an immense relief. I've always taken more after my dad but I don't know if this increases my chances of not having e4.

My other worry about getting the test done is it possibly being used against me in the future when trying to obtain long-term care insurance, something my parents obtained before my mom's diagnosis.

Sorry for all the questions. I am a big researcher, which I'm sure does not help my anxiety! Any advice is welcome. Thank you!

JT
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Julie G
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Re: New member deciding whether to test

Post by Julie G »

Do early-onset AD patients also have the APOE gene or is it different?
Genetic early onset Alzheimer’s is a completely different gene. That said, ApoE4 carriers, especially homozygotes can develop symptoms earlier.
My father was negative for all APOE variants.
Impossible. Everyone has two copies, one from each parent: E2, E3, or E4. If he did 23andMe and was negative for E4, then he’s most likely a 3/3 or (very unlikely) he could be a 2/3 or 2/2.
I am predisposed to moderate and sometimes severe anxiety so I'm worried about the downward spiral of finding out if have 1 or 2 copies of e4. On the flip side, if I didn't have it, it would be an immense relief. I've always taken more after my dad but I don't know if this increases my chances of not having e4.
JT, you don’t need to have this test done. Based upon your parent’s results, you can easily estimate your results. Carriage of a single copy of E4 only puts you at mildly increased risk of Alzheimer’s. You’re young and beautifully poised to employ the lifestyle strategies we recommend to further minimize your chances.
My other worry about getting the test done is it possibly being used against me in the future when trying to obtain long-term care insurance, something my parents obtained before my mom's diagnosis.
That's a valid concern that we cover here. Only if you ask your doctor to run the test or share results with him/ her, could this affect your ability to purchase both long term care or life insurance.
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Re: New member deciding whether to test

Post by JudyH »

You will have one e4, if your dad is a e3/e3 and your mom an e4/e4 than you are an e3/e4. You get one from your dad and one from your mom and your mom only had a e4 to give you. And yes, your grandparents each had to have at least one e4. Your mom got one e4 from her dad and one from her mom.

Welcome to the club. Keep reading and learning and take baby steps to improving your health and minimizing your risk. Like you I am an e3/e4 and got the e4 from my mother. Your risk is significantly less than your mother's since you only carry one e4. Please try to let that comfort you and not create stress as you research, study and learn.
e3/e4
No family history of AD, they drop dead of heart attacks in their early 40's!
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floramaria
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Re: New member deciding whether to test

Post by floramaria »

jt2005 wrote: I am predisposed to moderate and sometimes severe anxiety so I'm worried about the downward spiral of finding out if have 1 or 2 copies of e4. JT
Welcome to the community, JT!

I am sorry to hear about your mother's decline. My own mother developed Alzheimer's too, and I understand the grief that can accompany that. Many of us here have either lost someone we love to Alheimer's and/or are currently caring for a loved one with AD.

You are not alone in your anxiety either. For many, finding out they carry a copy of the ApoE4 gene is a shock and very upsetting . A lot respond with by going into a downward spiral, but usually only for awhile. It does get better.

The good news, to counter the anxiety produced by learning one is a carrier of the Apoe4 allele, is that popular understanding and fear of ApoE4 and Alzheimer's Disease has really not kept up with the scientific studies. The idea that ApoE4 determines that a person will develop Alzheimer's has been undermined by what has been learned about the tremendous impact of lifestyle and other interventions. Reducing toxicity and optimizing biomarkers for factors supporting brain health can move the needle away from disease and towards longterm health.
A good starting point and guide to understanding the ApoE4 allele and how to lessen associated risk is the Primer. Written by a member who is also a physician, it provides a comprehensive and easy to understand overview, and also prioritizes the steps a person can take to reduce risk.

You can do a tremendous amount to reduce the risk that the genetic component will be expressed as disease. One resource that discusses this is The End of Alzheimer's by Dr Dale Bredesen. if you haven't read that, you may find it to be helpful in reducing anxiety. We have a WiKi entry about his work: Wiki-Bredsen

Also , as JulieG pointed out, at age 45 steps you take now can really benefit you longterm. You have time to take it slow, learn, and make changes gradually. If you are interested in learning more about a specific topic, there is a Search function you can access with the magnifying glass to the left of your user name. This how-to guide in the WiKi
is a user-friendly resource for how to quote people so they see your replies, how to search topics, how to subscribe to forums you are interested in, and how to send Private Messages.

Please let us know if you have questions. We are all here to share our experiences and important information and also to support one another. Again, a very warm welcome to you!
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IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
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jt2005
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Re: New member deciding whether to test

Post by jt2005 »

Julie G wrote:
Do early-onset AD patients also have the APOE gene or is it different?
Genetic early onset Alzheimer’s is a completely different gene. That said, ApoE4 carriers, especially homozygotes can develop symptoms earlier.
My father was negative for all APOE variants.
Impossible. Everyone has two copies, one from each parent: E2, E3, or E4. If he did 23andMe and was negative for E4, then he’s most likely a 3/3 or (very unlikely) he could be a 2/3 or 2/2.
I am predisposed to moderate and sometimes severe anxiety so I'm worried about the downward spiral of finding out if have 1 or 2 copies of e4. On the flip side, if I didn't have it, it would be an immense relief. I've always taken more after my dad but I don't know if this increases my chances of not having e4.
JT, you don’t need to have this test done. Based upon your parent’s results, you can easily estimate your results. Carriage of a single copy of E4 only puts you at mildly increased risk of Alzheimer’s. You’re young and beautifully poised to employ the lifestyle strategies we recommend to further minimize your chances.
My other worry about getting the test done is it possibly being used against me in the future when trying to obtain long-term care insurance, something my parents obtained before my mom's diagnosis.
That's a valid concern that we cover here. Only if you ask your doctor to run the test or share results with him/ her, could this affect your ability to purchase both long term care or life insurance.
Thank you so much for your reply and answers to my questions - so very helpful.

And thank you for the clarification on the APOE gene. I read the 23andMe test results wrong. I thought it tested for all variants but my dad's test simply said he did not have the E4 variant. They do not appear to test for the other variants.

Thank you again for your very helpful reply! :)
jt2005
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Re: New member deciding whether to test

Post by jt2005 »

JudyH wrote:You will have one e4, if your dad is a e3/e3 and your mom an e4/e4 than you are an e3/e4. You get one from your dad and one from your mom and your mom only had a e4 to give you. And yes, your grandparents each had to have at least one e4. Your mom got one e4 from her dad and one from her mom.

Welcome to the club. Keep reading and learning and take baby steps to improving your health and minimizing your risk. Like you I am an e3/e4 and got the e4 from my mother. Your risk is significantly less than your mother's since you only carry one e4. Please try to let that comfort you and not create stress as you research, study and learn.
Thank you! You made me feel so much better and yes, I will keep up with the studies (my dad is an over researcher like me so he sends me links to new studies daily!) and continue to improve my lifestyle and overall health! :)
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Re: New member deciding whether to test

Post by jt2005 »

floramaria wrote:
jt2005 wrote: I am predisposed to moderate and sometimes severe anxiety so I'm worried about the downward spiral of finding out if have 1 or 2 copies of e4. JT
Welcome to the community, JT!

I am sorry to hear about your mother's decline. My own mother developed Alzheimer's too, and I understand the grief that can accompany that. Many of us here have either lost someone we love to Alheimer's and/or are currently caring for a loved one with AD.

You are not alone in your anxiety either. For many, finding out they carry a copy of the ApoE4 gene is a shock and very upsetting . A lot respond with by going into a downward spiral, but usually only for awhile. It does get better.

The good news, to counter the anxiety produced by learning one is a carrier of the Apoe4 allele, is that popular understanding and fear of ApoE4 and Alzheimer's Disease has really not kept up with the scientific studies. The idea that ApoE4 determines that a person will develop Alzheimer's has been undermined by what has been learned about the tremendous impact of lifestyle and other interventions. Reducing toxicity and optimizing biomarkers for factors supporting brain health can move the needle away from disease and towards longterm health.
A good starting point and guide to understanding the ApoE4 allele and how to lessen associated risk is the Primer. Written by a member who is also a physician, it provides a comprehensive and easy to understand overview, and also prioritizes the steps a person can take to reduce risk.

You can do a tremendous amount to reduce the risk that the genetic component will be expressed as disease. One resource that discusses this is The End of Alzheimer's by Dr Dale Bredesen. if you haven't read that, you may find it to be helpful in reducing anxiety. We have a WiKi entry about his work: Wiki-Bredsen

Also , as JulieG pointed out, at age 45 steps you take now can really benefit you longterm. You have time to take it slow, learn, and make changes gradually. If you are interested in learning more about a specific topic, there is a Search function you can access with the magnifying glass to the left of your user name. This how-to guide in the WiKi
is a user-friendly resource for how to quote people so they see your replies, how to search topics, how to subscribe to forums you are interested in, and how to send Private Messages.

Please let us know if you have questions. We are all here to share our experiences and important information and also to support one another. Again, a very warm welcome to you!
Thank you so much for your super informative reply. It made me feel so much better and I will read up on the link you gave me and very much appreciate the time you took to reply. Many thanks! :)
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Re: New member deciding whether to test

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I just wanted to say what a wonderful community this is - such a warm welcome! I can't tell you how comforting each of your replies was. I'm already such an anxious person and when I read my mom's results, I was just *spinning* most of yesterday, researching, diving into my darkest nightmare, filled with dread to the point I told my husband that if I start going downhill, I'm just gonna jump off a cliff. I know, I went to the darkest place first!

My dad has been trying to comfort me as well by pointing out some things about my mom that he thinks may have been contributing factors to her AD along with her genetics: she's never been overweight but has never exercised regularly, has very high cholesterol, specifically high triglycerides (she LOVES sugar but my dad did finally make her cut it out) and also never had much mental stimulation. She never wanted a job/career (that's not a slam - she was a wonderful mom and homemaker - she just didn't have a lot of outside interaction with the world), has never been someone who is particularly curious about the world and unfortunately in her 50s and beyond, didn't have much of a social life.

I have high overall cholesterol but high HDL/good and low triglycerides but do need to work on getting my LDL/bad down a bit (it's borderline high). I gave up sugar, dairy and gluten a couple years ago (I do "cheat" sometimes), I've exercised fairly regularly all my life (maybe because unlike my mom I have struggled with my weight!) and am a very curious person who needs a lot of mental stimulation. So I'm hoping those factors and the continued striving for a healthier lifestyle will keep me from this awful disease. Slowly watching my mom fade away and watching my dad struggle taking care of her is the most heartbreaking thing. They are very much like the couple from The Notebook - a movie I can no longer watch. :cry:

Thank you again for listening, answering and giving me so much comfort. I cried tears of relief after reading your posts - you don't know how much it meant! :)
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floramaria
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Re: New member deciding whether to test

Post by floramaria »

jt2005 wrote:I just wanted to say what a wonderful community this is - such a warm welcome! I can't tell you how comforting each of your replies was. I'm already such an anxious person and when I read my mom's results, I was just *spinning* most of yesterday, researching, diving into my darkest nightmare, filled with dread to the point I told my husband that if I start going downhill, I'm just gonna jump off a cliff. I know, I went to the darkest place first!

My dad has been trying to comfort me as well by pointing out some things about my mom that he thinks may have been contributing factors to her AD along with her genetics: she's never been overweight but has never exercised regularly, has very high cholesterol, specifically high triglycerides (she LOVES sugar but my dad did finally make her cut it out) and also never had much mental stimulation. She never wanted a job/career (that's not a slam - she was a wonderful mom and homemaker - she just didn't have a lot of outside interaction with the world), has never been someone who is particularly curious about the world and unfortunately in her 50s and beyond, didn't have much of a social life.

I have high overall cholesterol but high HDL/good and low triglycerides but do need to work on getting my LDL/bad down a bit (it's borderline high). I gave up sugar, dairy and gluten a couple years ago (I do "cheat" sometimes), I've exercised fairly regularly all my life (maybe because unlike my mom I have struggled with my weight!) and am a very curious person who needs a lot of mental stimulation. So I'm hoping those factors and the continued striving for a healthier lifestyle will keep me from this awful disease. Slowly watching my mom fade away and watching my dad struggle taking care of her is the most heartbreaking thing. They are very much like the couple from The Notebook - a movie I can no longer watch. :cry:

Thank you again for listening, answering and giving me so much comfort. I cried tears of relief after reading your posts - you don't know how much it meant! :)
Hi jt2005,

Thank you for your replies to all of our posts. It is wonderful to hear from you that the posts brought you comfort. You are absolutely right about this being a wonderful community. We are happy that you have joined us!

There is a wealth of information and support that you can both draw upon and add to. We are all learning from each other’s experience. One of the things that I find comforting myself is that this is a very positive and optimistic community overall, and this positive approach is well-founded and nourished by strong objective information. There is so much that we can do to shift the odds in our favor. And you are already off to a great start with your dietary changes, regular exercise throughout your life, low triglycerides and mental stimulation. These are all important factors.

It is heartbreaking to watch your mom fade away, and to see your dad struggle, as I well know. And at the same time, you can probably find times of deep connection with your mom during this time. Some of the interactions I with my mother when her AD was far advanced were really wonderful, deep communication, even after words were no longer the tool they had been. I cherish those memories and how much we were able to just be with each other in a different way than we’d been before. All of the love was still there, and sometimes even more centrally present than we’d let it be before.

As your dad has wisely pointed out, the way you are living already is different from your mom’s life and factors that could have contributed to her AD. Changes you may make to tweak things even more towards longterm cognitive health (as well as longterm overall health) put you in a much better position to remain healthy on every level than your mom was. The resources and the depth and breadth of knowledge available to you and to me and to all of us living now are things that your mom and my mom didn’t have access to. We can use this information to guide ourselves towards changes that our mothers never knew might be beneficial to them. We are fortunate, indeed, jt2005.
My heartfelt best wishes to you,
Floramaria
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
jt2005
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Re: New member deciding whether to test

Post by jt2005 »

floramaria wrote:
Hi jt2005,

Thank you for your replies to all of our posts. It is wonderful to hear from you that the posts brought you comfort. You are absolutely right about this being a wonderful community. We are happy that you have joined us!

There is a wealth of information and support that you can both draw upon and add to. We are all learning from each other’s experience. One of the things that I find comforting myself is that this is a very positive and optimistic community overall, and this positive approach is well-founded and nourished by strong objective information. There is so much that we can do to shift the odds in our favor. And you are already off to a great start with your dietary changes, regular exercise throughout your life, low triglycerides and mental stimulation. These are all important factors.

It is heartbreaking to watch your mom fade away, and to see your dad struggle, as I well know. And at the same time, you can probably find times of deep connection with your mom during this time. Some of the interactions I with my mother when her AD was far advanced were really wonderful, deep communication, even after words were no longer the tool they had been. I cherish those memories and how much we were able to just be with each other in a different way than we’d been before. All of the love was still there, and sometimes even more centrally present than we’d let it be before.

As your dad has wisely pointed out, the way you are living already is different from your mom’s life and factors that could have contributed to her AD. Changes you may make to tweak things even more towards longterm cognitive health (as well as longterm overall health) put you in a much better position to remain healthy on every level than your mom was. The resources and the depth and breadth of knowledge available to you and to me and to all of us living now are things that your mom and my mom didn’t have access to. We can use this information to guide ourselves towards changes that our mothers never knew might be beneficial to them. We are fortunate, indeed, jt2005.
My heartfelt best wishes to you,
Floramaria
Thank you Floramaria!

How wonderful you were able to find deep connection with your mother. I struggle with this as my parents live 8 hours away and I only see them 3-4 times a year. They travel to see us as my dad likes to get out of the house but traveling makes my mother worse so she's usually quite confused while she's here - and the few times we've gone to see them, this also creates confusion for her - any break in routine does. This latest visit at Easter, she knew who I was but didn't know how we were related - she asked me if we went to college together. And certain times during the visit, she either didn't recognize my dad at all and was scared of him or thought he was her grandfather. So she was probably imagining she was my age and my dad looked way too old to be her husband!

I've pulled back on calling her (before she got worse, we used to talk once a week, sometimes for hours) because when I do, it's such a struggle to carry on a conversation. I feel I will regret calling her less but it puts stress on both of us when I do call. My dad is usually in the background and puts the phone on speaker to help with conversation but he absolutely loathes talking on the phone so this doesn't help. Sometimes she seems happy to hear from me and other times just simple conversation seems to stress her out so we only talk for a couple minutes and I feel worse for having called because I've agitated her. My best friend told me to find the path of least regret with my mom and I'm still struggling to find out what that is for me. I know I need to let go of the old relationship we had and try to forge a new one. I'm sure many of you have struggled with this.

Thank you again for your thoughful reply,
JT
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