Hi Trisha, Thank you for responding. Your situation sounds so much like ours. I'm sorry you are feeling as I do, the disappearing thing. It's hard. I'm fortunate in that we have four daughters who are loving and supportive. And two baby grandsons and a granddaughter on the way. In so many ways life is good, but then there's always the elephant in the room. I'm terribly envious of my sisters and friends who don't have our problems, and very sad that I don't have that kind of independence. Although I'm probably missing a window right now when we likely could do some modest traveling. My husband is certainly game to do this! I guess I'm just fearful of something new happening when we are someplace other than home. I'm definitely letting fear win out here. ...You and others have mentioned how helpful Mayo Clinic has been. Do you know if they do telehealth? I don't believe there's a Mayo Clinic near me. Best of luck to you and thank you again, Jean

I was a bit familiar with it when other people in family were dealing with it; but there is a whole different life when living with it. I have read many books on brain issues and one of my favs was "Vanishing", a very personal one. You using the word "disappearing" is part of it. Some days are good and then i relax and the "crazy" day comes along is a bit of a surprise. My term "crazy" not mean, it is like sometimes when i had "crazy" days with kids. I think i am okay but stomach goes nuts and i end up feeling like crying, when he takes nap i do too.
You are not disappearing but have become a caretaker by love and yes, angry, sad, but think of all the years before and find things to laugh about. And i do keep a journal and pray, pray, pray.