I was in a chat last night that was only with people who are caregivers for people with FTD. It was an interesting time, to say the least, and I came away from it realizing that most of us struggle to find any medical help that includes a clear understanding of what we are encountering on a daily basis. I applaud your search for a brilliant neurologist. I have not met such a one yet. We are fortunate that my husband's primary care doctor seems to have a full understanding as does my primary care doctor. The neurologists basically told us, after the diagnosis (another story by itself) that there is nothing further they can do to help us. They meant in terms of a cure or facilitating a regression or even a stalemate. There are, of course, many recommendations for exercise, organization, socialization, etc. My husband is not interested in any of those things. He is not mad about it either, thank goodness. I find the AFTD website to have much information, resources, etc.
My husband sleeps about 17 hours a day and is also at a plateau right now. I agree with sallysue when she says acceptance is the key.
God bless you in your search and please stay close to us.

Thank you so much. It's so good to communicate with others rowing the same boat. Will let you and everyone know when I locate a Neuro specialist who can relate to this "new normal" world we are living in.