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

Post by Stitch »

Hi!

I am (66F) APOE 4/4. I have known this for a while but while I was still working it was too much to process without losing my stuff.

So, since I retired, I did the stages of grief over the past year, and finally decided to see if there is any hope.

Background: My dad died at 84 of pneumonia 2ndary to Alzheimers; my mom had only mild memory issues when she died of CVD at 88. Both of my sisters developed AD cognitive dysfunction at ages 65 and 79.

I am on the autism spectrum and suspect that everybody on Dad's side of the family was also. All of my kids/grandkids are on the spectrum from level 1-3. I also have ADD.

So far I have only SCI, as I recognize I used to be brighter, quicker, and able to leap small buildings in two bounds. Mostly short-term memory and word-finding issues, as I have always had some degree of face blindness due to ASD.

I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.

I am currently reading the End of Alzheimers and starting into RECODE with GI restriction (will be heading for keto when I figure out how that works 2 hours from the closest Walmart) and 14:3 fasting.

I was lucky to be accepted for a medical trial that provides significant testing - not sure yet about the treatment phase, as it is based on the amyloid hypothesis alone. This is a 5 hour drive from my house, but the fact that I don't have clear cut symptoms means that getting testing through my insurance will be problematic at best.

Does anybody else here live in an extremely remote area or medical desert? I'd love to compare notes on coping with same.

Whew this is really long. Sorry. Been kinda bottled up for a bit now.
Last edited by Stitch on Fri May 10, 2024 6:58 pm, edited 1 time in total.
Lyre Taylor
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Re: New member

Post by Lyre Taylor »

Stitch wrote: Fri May 10, 2024 1:44 pm Hi!

I am (66F) APOE 4. I have known this for a while but while I was still working it was too much to process without losing my stuff.

So, since I retired, I did the stages of grief over the past year, and finally decided to see if there is any hope.

Background: My dad died at 84 of pneumonia 2ndary to Alzheimers; my mom had only mild memory issues when she died of CVD at 88. Both of my sisters developed AD cognitive dysfunction at ages 65 and 79.

I am on the autism spectrum and suspect that everybody on Dad's side of the family was also. All of my kids/grandkids are on the spectrum from level 1-3. I also have ADD.

So far I have only SCI, as I recognize I used to be brighter, quicker, and able to leap small buildings in two bounds. Mostly short-term memory and word-finding issues, as I have always had some degree of face blindness due to ASD.

I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.

I am currently reading the End of Alzheimers and starting into RECODE with GI restriction (will be heading for keto when I figure out how that works 2 hours from the closest Walmart) and 14:3 fasting.

I was lucky to be accepted for a medical trial that provides significant testing - not sure yet about the treatment phase, as it is based on the amyloid hypothesis alone. This is a 5 hour drive from my house, but the fact that I don't have clear cut symptoms means that getting testing through my insurance will be problematic at best.

Does anybody else here live in an extremely remote area or medical desert? I'd love to compare notes on coping with same.

Whew this is really long. Sorry. Been kinda bottled up for a bit now.
Hello Stitch,
As a support team intern, I want to welcome you to this site. I understand how scary this news was for you to process especially with so many family members who have struggled with cognitive dysfunction. Let me assure you that you are not alone. You have found a supportive community here. Apoe4/4 a new genetic variant is a link where other people have discussed your question. You may want to browse this article.

I would love 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. We believe very strongly that your genes are not your destiny. There are so many lifestyle changes that can be made to support and improve brain health.

Warmly,
Lyre
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Stitch
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Re: New member

Post by Stitch »

Lyre Taylor wrote: Fri May 10, 2024 3:45 pm
Stitch wrote: Fri May 10, 2024 1:44 pm Hi!

I am (66F) APOE 4. I have known this for a while but while I was still working it was too much to process without losing my stuff.

So, since I retired, I did the stages of grief over the past year, and finally decided to see if there is any hope.

Background: My dad died at 84 of pneumonia 2ndary to Alzheimers; my mom had only mild memory issues when she died of CVD at 88. Both of my sisters developed AD cognitive dysfunction at ages 65 and 79.

I am on the autism spectrum and suspect that everybody on Dad's side of the family was also. All of my kids/grandkids are on the spectrum from level 1-3. I also have ADD.

So far I have only SCI, as I recognize I used to be brighter, quicker, and able to leap small buildings in two bounds. Mostly short-term memory and word-finding issues, as I have always had some degree of face blindness due to ASD.

I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.

I am currently reading the End of Alzheimers and starting into RECODE with GI restriction (will be heading for keto when I figure out how that works 2 hours from the closest Walmart) and 14:3 fasting.

I was lucky to be accepted for a medical trial that provides significant testing - not sure yet about the treatment phase, as it is based on the amyloid hypothesis alone. This is a 5 hour drive from my house, but the fact that I don't have clear cut symptoms means that getting testing through my insurance will be problematic at best.

Does anybody else here live in an extremely remote area or medical desert? I'd love to compare notes on coping with same.

Whew this is really long. Sorry. Been kinda bottled up for a bit now.
Hello Stitch,
As a support team intern, I want to welcome you to this site. I understand how scary this news was for you to process especially with so many family members who have struggled with cognitive dysfunction. Let me assure you that you are not alone. You have found a supportive community here. Apoe4/4 a new genetic variant is a link where other people have discussed your question. You may want to browse this article.

I would love 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. We believe very strongly that your genes are not your destiny. There are so many lifestyle changes that can be made to support and improve brain health.

Warmly,
Lyre
Thanks Lyre. It's a relief to know that others are also fighting!
mike
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Re: New member

Post by mike »

Stitch wrote: Fri May 10, 2024 1:44 pm I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.
What new research!? This is old news. Very positive trials going on.
Sonoma Mike
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lb8855
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Re: New member

Post by lb8855 »

mike wrote: Fri May 17, 2024 9:03 am
Stitch wrote: Fri May 10, 2024 1:44 pm I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.
What new research!? This is old news. Very positive trials going on.
A recent study by Biomedical Research Institute Sant Pau (https://www.nature.com/articles/s41591-024-02931-w) indicates that APOE4 homozygotes represent a genetic form of AD rather than just risk factor... Hopefully this finding will stimulate researchers passion to develop drug for APOE4 carriers. I personnaly thinkg Gene editing would be a good modality to cure the disease but we need to wait for 10+ yrs because currently they are all at very early stage.

Biao (APOE4/4 Allele carrier and investor from healthcare VC)
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Re: New member

Post by TCHC »

Stitch wrote: Fri May 10, 2024 1:44 pm Hi!

I am (66F) APOE 4/4. I have known this for a while but while I was still working it was too much to process without losing my stuff.

So, since I retired, I did the stages of grief over the past year, and finally decided to see if there is any hope.

Background: My dad died at 84 of pneumonia 2ndary to Alzheimers; my mom had only mild memory issues when she died of CVD at 88. Both of my sisters developed AD cognitive dysfunction at ages 65 and 79.

I am on the autism spectrum and suspect that everybody on Dad's side of the family was also. All of my kids/grandkids are on the spectrum from level 1-3. I also have ADD.

So far I have only SCI, as I recognize I used to be brighter, quicker, and able to leap small buildings in two bounds. Mostly short-term memory and word-finding issues, as I have always had some degree of face blindness due to ASD.

I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.

I am currently reading the End of Alzheimers and starting into RECODE with GI restriction (will be heading for keto when I figure out how that works 2 hours from the closest Walmart) and 14:3 fasting.

I was lucky to be accepted for a medical trial that provides significant testing - not sure yet about the treatment phase, as it is based on the amyloid hypothesis alone. This is a 5 hour drive from my house, but the fact that I don't have clear cut symptoms means that getting testing through my insurance will be problematic at best.

Does anybody else here live in an extremely remote area or medical desert? I'd love to compare notes on coping with same.

Whew this is really long. Sorry. Been kinda bottled up for a bit now.
Hi Stitch
I've seen lots of posts in the various groups about this new Spanish research. I've just looked at some of the information from the report and it seems that they're saying 4/4s had amyloid plaques.
I've seen other reports that people with and without Alzheimer’s symptoms can have amyloid plaques.
And I watched something only this week quoting a report from the UK Biobank, saying that amyloid plaques with no inflammation = fine, amyloid plaques + inflammation, not so good.
I hope some of the 4/4s in this group, who are doing just fine, will pile in and tell their stories, to give you some comfort.
I see that the Interns already commented showing where on this site to look for info on what to do, just take it one small step at a time, so it doesn't get overwhelming, and before you know it, you'll be looking back and realising how far you've come, how much you've changed and how much you've improved your overall health, never mind your brain health!
Let us know how you get on, and keep asking questions of this group, it's a great resource!
Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
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Re: New member

Post by JulieMorris »

lb8855 wrote: Mon May 20, 2024 1:32 am
mike wrote: Fri May 17, 2024 9:03 am
Stitch wrote: Fri May 10, 2024 1:44 pm I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.
What new research!? This is old news. Very positive trials going on.
A recent study by Biomedical Research Institute Sant Pau (https://www.nature.com/articles/s41591-024-02931-w) indicates that APOE4 homozygotes represent a genetic form of AD rather than just risk factor... Hopefully this finding will stimulate researchers passion to develop drug for APOE4 carriers. I personnaly thinkg Gene editing would be a good modality to cure the disease but we need to wait for 10+ yrs because currently they are all at very early stage.

Biao (APOE4/4 Allele carrier and investor from healthcare VC)
Hi lb8855 -
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.

Thanks for sharing the Nature article! I can see that you have a love of learning and like to stay well-informed. Related to that, you might be interested in this topic: "ApoE4/4 a new genetic variant of Alzheimer's" and the discussion around it. You can find it here:
new genetic variant

Since this is your first post, you might be interested in reading through our Primer. It is an incredible resource of information about the biochemistry of ApoE4. It 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.

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. It's wonderful to have more people sharing the latest research and participating in healthy discussions regarding eradicating Alzheimer's. Please feel free to reach out anytime with questions or if you just need support. You are not alone. We are here for you.
PhD in Speech-Language Pathology
Functional Medicine Certified Health Coach
Interested in all things brain-related
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Stitch
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Re: New member

Post by Stitch »

lb8855 wrote: Mon May 20, 2024 1:32 am
mike wrote: Fri May 17, 2024 9:03 am
Stitch wrote: Fri May 10, 2024 1:44 pm I'm pretty disturbed by the new research that says for homozygous APOE4, it's not a matter of if but when.
What new research!? This is old news. Very positive trials going on.
A recent study by Biomedical Research Institute Sant Pau (https://www.nature.com/articles/s41591-024-02931-w) indicates that APOE4 homozygotes represent a genetic form of AD rather than just risk factor... Hopefully this finding will stimulate researchers passion to develop drug for APOE4 carriers. I personnaly thinkg Gene editing would be a good modality to cure the disease but we need to wait for 10+ yrs because currently they are all at very early stage.

Biao (APOE4/4 Allele carrier and investor from healthcare VC)
Thank you lb8855 for your positive input! It's been 25 years since I was a regular on online bulletin board style forums, and I was hoping positivity has won out over the dark side! Your post gives me hope.
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