I am so happy you posted this question - it is quite timely for me. I have not formally introduced myself on the welcome page yet (I will do that soon), but here is my clinical status: I am 50 years young, 3/4 with MTHFR (C677T C;T and A1298C A;C) gene variations (among others) with reactivated EBV and high levels of lead toxicity. I have dealt with severe, chronic insomnia for several years - so much so that I was forced to leave my 25+ year corporate career in 2017.
I just recently told my husband some general info - but to be blunt, he does NOT understand the gravity of this situation. Since I've been dealing with significant issues (lack of energy, fatigue, brain fog, etc.) for quite some time now, he's convinced that I'm just depressed and need to exercise and get out more - and I thought so too, until recently. He's never been a caregiver/nurturer, so I've learned to look elsewhere for this type of support (or a shoulder to cry on). My parents are deceased and every one of my 4 (older) siblings have multiple health issues. . . I won't go into detail here, but it's pretty obvious that many of them will test positive even though no one in my family has been diagnosed with AD (technically, including me). I am close to one of my sisters, but she's dealing with health issues of her own and I am fearful what this news will do to her.
I am currently in the process of seeking out a neuro/psychologist/psychiatrist - trying to find one that is up on the latest advancements, which is not easy to do. I did reach out to MPI Cognition (Bredesen) and waiting to hear back from them. If anyone is in the Northeast Region (US), I'd be interested in any recommendations you may have!
Considering my situation (homebound most days), I am also concerned about becoming isolated - I know the importance of maintaining an active social life. We do entertain - probably more than average, but there are definitely times that it takes all my energy to do so. I had close "friends" at work (we all worked remotely), but since I left, we haven't kept in touch. My two "best" girlfriends live far away so it's not often that I spend time with them, and I'm sad to report that we don't talk as often as I would hope to. Much of this is because I haven't been in a good place for a long time and feel like I am just complaining every time we do talk - they are probably tired of hearing it. I do think that if I disclosed this information, they'd both be on the first plane/train here! There are others in our church community I can probably reach out to, but I'm not ready to do that yet.
So as of right now, I don't have anyone to talk with about this. . . I am very grateful to have this forum.
In regards to privacy/protection, I recently searched this and there is a law in place (US): http://ginahelp.org/
And here's an article on the "loopholes": https://www.theatlantic.com/health/arch ... na/519216/
I haven't dug deep into this, so I'd love to hear from anyone who has.
Thanks for listening! ")