For a lot of us, it is about choosing our quality of life. This is what makes it so terrifying for me as a mother. Right now I'm doing the best I can by Greta. My husband and I are constantly discussing, asking questions and seeking out more options. We are open to hearing suggestions and have been blessed by trying different things for Greta. My greatest fear, as an ADEM parent, is that I will have chosen wrong for her. Guided her wrong in the process. It's a heavy responsibility I take very seriously.
For those who are older and able to decide for themselves what kind of treatment they want and what kind of quality of life they are looking for, I'm sure you go through the same things, listening, observing, asking questions and being willing to try other options. In the end, no one knows your body like you do. In this case, no one knows your husband better than he does himself. Not even the doctors. He's got to choose for himself how to deal with this and it's probably no easier for him than any others. It is a bit of a mystery disease and if it's impact were predictable and consistent across the board for its victims, we'd probably have better answers - but we all know that ADEM has such a wide range of ways it impacts each patient due to so many variables and factors. We all have to do the best we can. Hang in there.
I know about the misery of medicine head personally. I've seen Greta's inability to cope emotionally at times and since her neuro hasn't seen fit to go the route of meds yet and we keep trying other things that help her, we believe that meds aren't the best route for a vivacious 11 year old girl. But that's not the right choice for others. It all hits us differently. Hang in there.
sweetie pie said:
Wow. This has been the most helpful discussion I have seen so far. My husband does not have the emotional ups and downs that you are all describing , but his neurologist put him on Zoloft right from the start. He just gets so fatigued really easily, and he feels like he has medicine head all the time. It is a struggle to focus. Part of me has just thought that he can't get past what has happened and that he needs to work past it. I get frustrated because he always seems to ask me what I was doing or where I went when I told him specifically before I did it. Now I am seeing that you all seem to have the same issues. We did try tapering him off the Zoloft recently, hoping it would make him less fuzzy headed, but about 4 days after getting to the point where he could stop it completely he broke down and started sobbing from the frustration of it all. He went back on the Zoloft next day. We have been trying the high fat/no gluten/no carbs and sugar(not easy there) eating discipline and I believe it has helped some. We are reading the book "Grain Brain". Some of it may make sense to some of you. Thank you all for being so open in this discussion, it makes me feel like I can be better understanding now.