Introduction, that is all.

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
dee
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Introduction, that is all.

Postby dee » Fri Oct 15, 2021 1:31 pm

Hi. I'm Dee. I'm not use to using forums like this, so I hope you will all bear with me while I learn how to use it. I have not yet been tested for the APOE-4 gene, but seeing that there is a link between it and severe Covid has convinced me I should. Alzheimer's runs in my family. It would actually be harder to find people who didn't develop it (on my mother's side) than people who did. My mother died from it in 2017; she was tested for the gene as part of her diagnosis and came up positive. Her sister died from the disease a year before her. Her third sister is in a drug trial for the disease currently, so whatever testing was done on her indicated that she should be part of the study. That's all three siblings. Their mother and grandmother also had it. Their mother developed it early, at 60, following a bad fall that caused a severe brain injury.

I say "died from" because the underlying illnesses that killed my mother and aunt were not diagnosed since AD was far enough along that the testing for them could have killed them.

I turned 60 this year. I've gone back and forth on testing for a long time, but I am sure now that it's the right thing to do. I am absolutely terrified, but I already living with the assumption that AD is coming for me. I might as well be sure. It should catapult me into doing the work that might stave off the disease long enough for a good therapy or maybe even a cure to be developed. You know, that whole exercise/diet thing.

Anyway. Sad to be here. But glad that there's a soft place to land as we move along on this journey. It's very, very scary.

NF52
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Re: Introduction, that is all.

Postby NF52 » Sat Oct 16, 2021 10:14 am

dee wrote:Hi. I'm Dee. I'm not use to using forums like this, so I hope you will all bear with me while I learn how to use it. I have not yet been tested for the APOE-4 gene, but seeing that there is a link between it and severe Covid has convinced me I should. Alzheimer's runs in my family. It would actually be harder to find people who didn't develop it (on my mother's side) than people who did...

I turned 60 this year. I've gone back and forth on testing for a long time, but I am sure now that it's the right thing to do. I am absolutely terrified, but I already living with the assumption that AD is coming for me. I might as well be sure. It should catapult me into doing the work that might stave off the disease long enough for a good therapy or maybe even a cure to be developed. You know, that whole exercise/diet thing.

Anyway. Sad to be here. But glad that there's a soft place to land as we move along on this journey. It's very, very scary.
Welcome and a warm hug, Dee, from someone who could be your genetic cousin, at age 69 with ApoE 4/4. (Given how many kids my maternal great-grandparents and grandparents had, that's not a big stretch!) Like you, " it would actually be harder to find people who didn't develop it (on my mother's side) than people who did."

But their lives were in far different times, influenced by multiple factors that are now more under our control. That includes the devastating brain injury your grandmother had at age 60, which likely a cascade of secondary effects completely unrelated to any ApoE4 gene.

It sounds like your mom was tested and found to have at least one copy of ApoE 4. ApoE4 isn't a dominant variant of the ApoE gene, unlike some genes for Early Onset Alzheimer's Disease (EOAD) in families with multiple generations of AD in the 30's to 50's. Instead, ApOE4 increases the risk because of how it ramps up or down other genes. But it's only one factor and researchers know an incredible amount more about it than they did even a decade ago.

Your mom and her siblings, like my mom and her 4 older sisters who developed AD, may have had cardiac disease and/or high blood pressure that went undiagnosed or was not aggressively treated. Heart disease is a risk with ApoE 4, but we have lots of evidence that lifestyle and medical management can let people live with it for years. My grandmother died of a stroke at age 45--none of her dozens of descendants has had a stroke!

Your mom's generations also may have grown up with more polluted air, water and food. Pesticides like DDT were endemic back then. She probably wasn't able to have the early life education you had, or the occupational challenge you've had--both of which contribute greatly to "cognitive reserve". Dr. Reisa Sperling, co-director of the Alzheimer's Clinical Trial Consortium, said in a talk last year that people with elevated levels of amyloid beta are not certain to develop Alzheimer's for not-yet-understood reasons. But she speculated: "Some of them just have so damn much cognitive reserve." I like to think that you and I and my friends with ApoE 4/4 who are in their 60's and doing just fine will prove there are many of us with "so damn much cognitive reserve."

Here's some advice about testing: You can do it and get an answer, or choose not to do it and simply act on what you know is a familial risk. I've taken the first course; my older sister who is healthy, active and has a great mind, has chosen the second. As she put it, "I know I'd just go down endless rabbit holes. I do better to chart my own course without knowing exactly what my genes say."

There are clinical trials seeking people with one or to copies of ApoE4, or with evidence of amyloid beta on a PET scan (which can happen 15 years or more before a diagnosis of even mild cognitive impairment. Some of those trials require that you be told of your ApoE status (because they include only ApoE4 carriers), others allow you to not learn of your status but tell you of your amyloid status (again because of inclusion criteria). But unless you're interested in joining a trial, you can spend some more time browsing and ask yourself if you have support from family, friends (or your friends here) to get you past any possible results.

As for me, I found out by accident after taking 23& me, just before my 62nd birthday. Seven years later I can say I am healthier (although "that whole diet/exercise thing" has never been my favorite thing!} , enjoy having been in a clinical trial, talking with others, reading this forum, spending time with 2 wonderful grandchildren and my husband and happy, healthy adult kids and traveling (again!) It hasn't been without dark moments, but I am at peace with knowing that I can steer my own ship, but I can't pick the harbor where I eventually land. The journey is a fascinating one all the same!

Reach out to us at any time--and never worry about how long your post is--it will always be shorter than my longest post!
4/4 and still an optimist!

dee
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Re: Introduction, that is all.

Postby dee » Wed Nov 03, 2021 9:37 am

Thank you for the advice and the empathy, NF52. I found out last night that I am 3/4. I will probably cry a lot this week. I am so freaking scared.

I'm trying to process. My mother and her sister (the one who died from the disease) both fought the good fight before it came. For my mother it was mostly diet. She also tried estrogen therapy, too, back in the day when we thought that would help. My aunt was the exercise queen. She was still going to kick boxing 3 times a week in the first facility she was in.

So. I guess I will do both of those things too (diet, not estrogen), and instead of thinking "it didn't work" try to focus on, "maybe it worked and held the disease off until their 70s". My mother was a big drinker too, and that seems like a bad thing for people with the apoe-4 allele. So after I bury myself in a bottle for a week, I guess I will cut alcohol out except for a glass of wine or two on holidays. And maybe see if I can get into a drug trial.

Damn, this is hard. The worst is what I know it will do to my kids and husband. The best I can for them, I guess, is give them a fight. Plan for the worst, but fight for the best.

I am so glad I found this site.

mike
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Re: Introduction, that is all.

Postby mike » Mon Nov 15, 2021 9:52 am

dee wrote:Thank you for the advice and the empathy, NF52. I found out last night that I am 3/4. I will probably cry a lot this week. I am so freaking scared.


Dee, being a 3/4 increases your risk somewhat for getting AD, but it is not a death sentence. There are many things to increase your odds of living a healthy cognitively intact life. Exercise and low carb are key. Avoid all added sugars. Fructose is also not your friend - stay away from juices and most fruits except for berries in small quantities. Only consume vegies grown above ground. This site is a great place to start learning. And take it slow - this is a marathon, not a sprint.
Sonoma Mike
4/4

NF52
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Re: Introduction, that is all.

Postby NF52 » Wed Nov 24, 2021 6:29 am

dee wrote:Thank you for the advice and the empathy, NF52. I found out last night that I am 3/4. I will probably cry a lot this week. I am so freaking scared.

I'm trying to process. My mother and her sister (the one who died from the disease) both fought the good fight before it came. For my mother it was mostly diet. She also tried estrogen therapy, too, back in the day when we thought that would help. My aunt was the exercise queen. She was still going to kick boxing 3 times a week in the first facility she was in.

So. I guess I will do both of those things too (diet, not estrogen), and instead of thinking "it didn't work" try to focus on, "maybe it worked and held the disease off until their 70s". My mother was a big drinker too, and that seems like a bad thing for people with the apoe-4 allele. So after I bury myself in a bottle for a week, I guess I will cut alcohol out except for a glass of wine or two on holidays. And maybe see if I can get into a drug trial.

Damn, this is hard. The worst is what I know it will do to my kids and husband. The best I can for them, I guess, is give them a fight. Plan for the worst, but fight for the best.

I am so glad I found this site.
Hi again dee,

Your reply and thanks moved me--and also caught me in the midst of a slew of granddogs, grandkids, a 6 hour drive through heavy traffic, minor surgery for my husband, an unexpected work project--which kept me from replying and reminded me of Winston Churchill's quote: "When you're going through hell, keep going." Sometimes we just have to ride the rapids for a while until we get to calmer waters. I hope you gave yourself permission to have that good cry and feel ready for Thanksgiving as a day that brings people, places and things close to your heart.

Your mother's history of drinking may have been a big factor in her diagnosis, although it was only recently been recognized as important for those with ApoE4. A glass or two of wine on the holidays is deserved--and I know some people who would say that modest amounts may not be a problem for those with only one copy of ApoE4. And your grandmother's history of a severe head injury and resulting cognitive change is why the Dept. of Defense is spending tens of millions each year to prevent and treat brain injuries--even in those without Apoe4.

Here's a very hopeful statistic, from a 2017 meta-analysis of 3 large population-based studies and one memory center-based study in the US and Netherlands. They were asking the question "What is a person's lifetime risk to age 85 of a diagnosis of either Mild Cognitive Impairment (MCI) or Alzheimer's or another dementia ? Here's a quote from the 2017 article:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4.. and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2).
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

You can see that people with no copies of ApoE 4 can still develop AD. Statistically you have a 75-80% chance of NOT having the same diagnosis as your mother--and that's not figuring in advances in lifestyle prevention and treatment.

You're at the perfect age to explore either AD observational studies or clinical trials dee, and since you're interested, here's a place to start: ApoE ε4 Alzheimer's Research: What's New and How YOU Can Accelerate Research from our Wiki. You'll find a whole section of options for finding trials under the heading Opportunities to Participate in Patient Registries and Observation Studies from 18-80+. It also has some videos from people who have volunteered for trials and a useful intro from the NIH Learn About Clinical Studies.

As someone who has been in both online and in-person studies, it's been a great learning experience and a chance to make a down payment on a better future for my kids and grandkids!
4/4 and still an optimist!


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