Hello to Lisa, And please do try and we all are continuing to do to find a neurologist with some experience treating ADEM.
We are still struggling to have answers and my love is 66 years old. My newest concern with him is the forgetfulness. But then again it could be his age. He did have some tangles in his brain along with the lesions in the past so it concerns me that he might be showing some signs of something more. I found the bag of trash in the bedroom when he thought he had taken it out the other day. Along with some everyday things like repeating the same questions repeatedly, then almost walking out of the store with the groceries in his hand without paying. When I guided him to the check out and told him we have to pay first, let's go to #4 checkout, he replied what is number 4? He tries to play things off as, Oh I just forgot I thought I had already done this or that.
I have some experience with demensia because my mother suffered for years with it until it became advanced. So this does concern me. He said he is really struggling with having the ambition to do anything. He said he has to force himself to do every day activities. He used to play online poker for hours, now he doesn't even do that. The fatigue is a major thing right now also, he doesn't stay up and about for more than 4 or 5 hours and he is back sleeping. We are carrying on though and not giving up on finding that one right doctor that might give us some answers. We have daughters getting married, grandchildren, and holidays, so we try to think positive. Each day it seems is something new. We thank the Lord that he does not have the severe issues our dear friend Belinda's husband is experiencing. My heart goes out to all of you. And Hoping everyone has a successful day in whatever way it may be. It has been a blessing to have you all here to talk, listen, and LEARN from....Lots of Good Thoughts on this Wednesday!