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!