dlerner wrote:My husband and I just got our 23 and me results. His dad had alzheimer's so we were concerned. Surprised to find out I have one APOE 4 variant and he has none. Not what we expected or I was ready for. I'm very proactive and have been reading alot which is how I found this site. Just introducing myself. I'm 57 weigh 118 and am in really excellent shape and exercise all the time and eat well.
Would be interested in clinical trials. Have read about ones that try giving A2 to people who have A4. Anyone know anything about this? Any thoughts or advice appreciated. Just starting to get my head around this. Only found out a few hours ago.
Welcome dlerner!
You have received wonderful support and advice already, proving once again what a great community this is! So I will add just a few tips and also address your question on clinical trials.
First, the fact that your found this forum only a few hours after you got your 23& me results suggests to me that you are proactive, with a resilient and positive mindset and ready to be the captain of your own voyage. If you haven't found a reference to "cognitive reserve and resilience" you will soon: along with prioritizing sleep, managing stress (give yourself permission to not work on that for a few weeks!) and exercise, using your cognitive skills seems to add years of brain health.
Like you, my husband is ApoE 3/3 and yet his mother had what was probably a mixed dementia (vascular and Alzheimers) in her mid-80's, and died at just about the same age as my mother, who was at least ApoE 3/4. Advanced old age is itself a risk for dementia, so in this case "what's good for the gander is good for the goose!" At your current age and weight and health, you have banked lots of brain health during crucial years!
As for the clinical trials, I believe NYU has a very small "proof of concept" trial to see if people with diagnosed Alzheimer's disease (AD) show a slower progression of symptoms when injected with a harmless virus that carries ApoE 2 to their brain. I assume this is being tried with people with AD because the safety and efficacy (benefit) are unproven, and this would be equivalent to a trying a new cancer drug on someone with metastatic cancer who has gone through other treatment options.
However, there are clinical registries seeking to enroll people who may want to participate in observational studies (not taking a specific drug or treatment), online studies and prevention studies.
Here's some links you may want to reference:
Together We Make the Difference! Participate in Alzheimer's and Related Dementias Clinical Research is from the National Institute on Aging (a division of the National Institute of Health
Learn About Clinical Studies is a helpful NIH website, with a tab for searching (try Advanced Search to find studies near you, or of certain types.)
GeneMatch is sponsored by the Banner Alzheimer's Institute and sends a cheek swab for DNA testing, then notifies you of studies for which you may be eligible.
For tips on how to quote users so they are notified of your reply, how to "search" and "subscribe' to topics, and how to check unread posts, see the
"How-To" Get the most out of the ApoE4.info website
And on the topic of telling your adult children, here's a forum thread with lots of views:
Tell my children or not?
Please keep posting; we love to meet new friends. Hugs from a healthy and happy 66 year old with ApoE 4/4!