Joining the club nobody wants to belong to!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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shug
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Joining the club nobody wants to belong to!

Post by shug »

Hi all, just wanted to introduce myself. I have already been helped a lot from your forum and appreciate all the information.

About 10 or 15 years ago my siblings and I purchased 23andme for my parents as christmas presents, just for fun. We did open up their alzheimer's and breast cancer info and were sorry to see Dad carried one copy of APO e4 but we didn't give it much thought. I don't remember my mother having any markers for alzheimer's that showed up. My Dad is now 84 with some cognitive impairment which I assume is probably alzheimers. He's still functional aside from getting lost so he stopped driving. Mom seems cognitively the same as always and they both still living at home together without assistance.

A couple of months ago I joined 23andme and I breezed past all the "I have read this and consent" stuff, thinking I already knew there was a 50/50 chance I would carry one APO e4 from Dad. So I open it and I have TWO copies of this APO e4 gene. Whaaat? I went back and looked at Mom's file and discovered she also carries one copy. Somehow I misremembered that!

So I've known for about 6 weeks now. I have read Dr. Bredesen's book and read through a lot of your threads here. I've been listening to Alzheimer's podcasts. I've ordered MCT oil, B12, and a bunch of other stuff I can't even remember. I'm trying to do intermittent fasting and cleaning up my diet. I've looked into some clinical trials: the Lexeo people are supposed to call me this week and I have also heard back from the Donanemab group as I live close to Eli Lilly. I am not sure whether I would proceed with either if I am invited but am looking into them.

Thank you for having this forum available to us. Wish I didn't have to join your group but it's nice to not be alone!
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RAJ64
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Re: Joining the club nobody wants to belong to!

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shug wrote: Mon Apr 04, 2022 6:40 pm Hi all, just wanted to introduce myself. I have already been helped a lot from your forum and appreciate all the information.

About 10 or 15 years ago my siblings and I purchased 23andme for my parents as christmas presents, just for fun. We did open up their alzheimer's and breast cancer info and were sorry to see Dad carried one copy of APO e4 but we didn't give it much thought. I don't remember my mother having any markers for alzheimer's that showed up. My Dad is now 84 with some cognitive impairment which I assume is probably alzheimers. He's still functional aside from getting lost so he stopped driving. Mom seems cognitively the same as always and they both still living at home together without assistance.

A couple of months ago I joined 23andme and I breezed past all the "I have read this and consent" stuff, thinking I already knew there was a 50/50 chance I would carry one APO e4 from Dad. So I open it and I have TWO copies of this APO e4 gene. Whaaat? I went back and looked at Mom's file and discovered she also carries one copy. Somehow I misremembered that!

So I've known for about 6 weeks now. I have read Dr. Bredesen's book and read through a lot of your threads here. I've been listening to Alzheimer's podcasts. I've ordered MCT oil, B12, and a bunch of other stuff I can't even remember. I'm trying to do intermittent fasting and cleaning up my diet. I've looked into some clinical trials: the Lexeo people are supposed to call me this week and I have also heard back from the Donanemab group as I live close to Eli Lilly. I am not sure whether I would proceed with either if I am invited but am looking into them.

Thank you for having this forum available to us. Wish I didn't have to join your group but it's nice to not be alone!
Hello shug, welcome to the ApoE4.info site!

Thank you for posting your experience with 23&me and how it has affected you and your family. You have discovered some surprising information, but I would say you have dealt with the news rather productively over the past 6 weeks. I am glad to hear your parents are living independently. :)

Which book by Dr. Bredesen have you read? I am currently reading his collaborative book The End of Alzheimer’s Program (c 2020), which is full of practical advice on implementing different aspects of the program. How do you feel about the changes you have made so far?

My mother (and her mother) had dementia which began in their 60s. My mom passed away in 2017 at age 77. The last 4 1/2 years she was in a long term care setting and didn’t know her family. Your parents are doing so well in comparison! I am very thankful my father is still living independently at age 84. He and my mom moved close by so I could support their goal of aging in place. I am thankful his end of life trajectory will not be like Mom’s. I have chosen not to test for my ApoE4 status, but given the family history, I am serious about living my life in the best way possible to avoid Alzheimer’s disease and related dementia. ;)

This community is very supportive and encouraging. It IS nice not to be alone and we are so glad you are here!

Warmly,
Rachel
RAJ64, BSN, RN
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With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt
shug
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Re: Joining the club nobody wants to belong to!

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Thank you, Rachel.
The book I read was The End of Alzheimer's but thank you for the info about the new "Program" book - I just ordered it from amazon!

I am feeling really good with my diet changes. I have actually lost 8 lbs -It's amazing how much easier willpower comes when life (or brain) may depend on it! I have zero acid reflux now so might try weaning down off omeprazole. I am trying to get my siblings on board; we are all borderline diabetic too.

My siblings have decided not to get the test.... and I probably wouldn't have either had I known there was a chance I carried two copies of APOe4.

I spoke with Cornell today about the Lexeo gene therapy trial but I don't qualify for that (yet). They said they could tell just from my conversation that I likely would not qualify as having mild cognitive impairment, which is required for inclusion in the current phase 1. I am still hopeful that they will have good results and may open up for more 4/4's who are not symptomatic in a later phase of the trial.
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RAJ64
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Re: Joining the club nobody wants to belong to!

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shug wrote: Tue Apr 05, 2022 5:47 pm Thank you, Rachel.
The book I read was The End of Alzheimer's but thank you for the info about the new "Program" book - I just ordered it from amazon!

I am feeling really good with my diet changes. I have actually lost 8 lbs -It's amazing how much easier willpower comes when life (or brain) may depend on it! I have zero acid reflux now so might try weaning down off omeprazole. I am trying to get my siblings on board; we are all borderline diabetic too.

My siblings have decided not to get the test.... and I probably wouldn't have either had I known there was a chance I carried two copies of APOe4.

I spoke with Cornell today about the Lexeo gene therapy trial but I don't qualify for that (yet). They said they could tell just from my conversation that I likely would not qualify as having mild cognitive impairment, which is required for inclusion in the current phase 1. I am still hopeful that they will have good results and may open up for more 4/4's who are not symptomatic in a later phase of the trial.
Hi Shug,

I have Bredesen’s first book, too. Please come back and share your thoughts about the Program book when you have a chance. I am enjoying how the book is organized and the clear bullet lists of action steps at the end of each chapter. It is written in a very readable style which encourages me that, yes, I can do this!

I totally feel where you are coming from with embracing added willpower based on what could happen if I don’t choose healthier habits. A bonus is that by choosing a healthier way of living, we actually do have quite a bit of control over genetic expression - it’s so encouraging that genes are not our destiny as once was thought! Lifestyle habits can actually turn on and off our genes. This phenomenon is known as epigenetics and provides hope for those with family history of dementia and/or ApoE4 genes. :D

You have done a great job with your lifestyle changes. I am so impressed with your perseverance. Losing 8 pounds and having zero reflux are superb outcomes in only 6 weeks. Your successes my well motivate your siblings.

On the bright side, I can say I am glad to hear you don’t qualify for the Cornell study at this point. That also is good news because you likely are doing well cognitively at this point. You have a lot of positive things in your favor. If you have time and wish to share, let us know what you are learning so we can learn with you. :)

Warmly,
Rachel
RAJ64, BSN, RN
Functional Medicine Certified Health Coach
With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt
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Re: Joining the club nobody wants to belong to!

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shug wrote: Tue Apr 05, 2022 5:47 pm My siblings have decided not to get the test.... and I probably wouldn't have either had I known there was a chance I carried two copies of APOe4.
Welcome Shug! It is exactly when you have two ApoE4s that you especially need to know as soon as possible, so you have a chance to do something about it. There is evidence that there is neuron loss decades prior to symptoms. There are many ways to lose neurons - not enough fuel (glucose and/or ketones), leaky Blood Brain Barrier (BBB), toxins, etc. As a 4/4 you use ketones better than most, and glucose less well than most. Take advantage of that by keeping your ketones up and carbs down. Take care of your BBB by treating virus/bacteria and especially through moderate exercise. Keep you blood sugars as constant as you can - if they fluctuate highly, then the BBB will choose to blunt the highs by reducing the concentration of glucose receptors This means that during lows there is not enough glucose getting into the brain. This goes on long enough and neurons die. You can make up for some of that with ketones.
Sonoma Mike
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shug
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Re: Joining the club nobody wants to belong to!

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Thank you both for the warm welcome and advice! I just received my Bredesen "Program" book from Amazon and can't wait to dig in! I will try to check back in after the weekend when I've had time to read. I plan to take notes while reading this book... I wish I had taken notes for the first one. There is just so much information; hard to keep it all straight. This gives me a chance to go back over things and maybe there is some newer info I haven't seen yet.

Has anyone had issues with discussing APOe4 status with their doctors due to concern about having that info in your medical record? I have some worry that I may not be able to get long term care insurance if my doctor writes that into the record. Although I would like to talk to her about it also....
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RAJ64
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Re: Joining the club nobody wants to belong to!

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shug wrote: Thu Apr 07, 2022 4:44 pm Has anyone had issues with discussing APOe4 status with their doctors due to concern about having that info in your medical record? I have some worry that I may not be able to get long term care insurance if my doctor writes that into the record. Although I would like to talk to her about it also....
NF52
Enjoy your book, shug! Taking notes is a good idea. :D

I quoted NF52 to ask her opinion about your question of including or excluding APOE4 status in medical records. It does seem from what I’ve read that it can be used to deny coverage in some instances. Maybe you can discuss with your doctor off record and request it not be recorded? I’d like to think we own our medical records and could exert this level of control over them, but perhaps it depends on the provider. It’s a good question and one that probably has different answers for different scenarios.

I wanted to let you know if you would like to search archived posts, you can type in terms you want to investigate into the search tool at the top right of the page. There is a magnifying glass icon to signify it’s a search engine. Past conversations will appear if they contain your term(s). Feel free to start up a conversation on a post that’s older. It’s good to revisit topics from time to time. ;)

Warmly,
Rachel
RAJ64, BSN, RN
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With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt
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Re: Joining the club nobody wants to belong to!

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shug wrote: Thu Apr 07, 2022 4:44 pm
Has anyone had issues with discussing APOe4 status with their doctors due to concern about having that info in your medical record? I have some worry that I may not be able to get long term care insurance if my doctor writes that into the record. Although I would like to talk to her about it also....
Hi shug, I noticed you had not gotten an answer to your question. Here is relevant information from our Thinking About Testing? page
You can ask a physician to run the APOE genotyping test. You can learn more about it here. Many cardiologists routinely run this test since APOE-ε4 also predisposes carriers to cardiovascular disease. The Pros: If your physician orders the test, often insurance will pay for it. You will receive the information directly from your physician who will be able to address your concerns. If your physician is knowledgeable about APOE-ε4, s/he may be able to guide you through prevention strategies. The Cons: Unfortunately, the majority of physicians are not informed about this gene. Be aware that there are many, often contradictory approaches to preventing the diseases associated with APOE. Also, once the results of a test are entered into your medical record, it may impact your ability to get life insurance or long-term care insurance. The Genetic Information Nondiscrimination Act (GINA) currently protects US residents from losing healthcare because of genetic information. Be aware of the laws and practices in your country before asking your physician to
(I added the bold to the most pertinent sentence of the quote.)
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shug
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Re: Joining the club nobody wants to belong to!

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Thank you, Floramaria. I suspected that was the case; going to hold off on talking with my doctor for now and just do my best following Bredesen diet and exercise recommendations.

I’m about halfway through his “program” book. I’m taking notes this time and feel like it’s a good review of the “End of Alzheimer’s “ book which I read fast but not as closely.

I have an appointment next week at Eli Lilly for a blood test for tau to see if I qualify for the Donanemab study. Hoping I don’t qualify I guess!
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