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    • CommentAuthorCarolVT
    • CommentTimeNov 10th 2014
     
    In my continuing search for information, I found this site: ftdsupportforum.com It is not limited to spouses, and so serves a slightly different function. The membership is worldwide. It has a message board similar to here, with the sharing of questions and symptoms and support. I'm finding it helpful. My DH doesn't think he has any problem except aging (74) and he declines to be evaluated, so I'm trying to work this out on my own. It is very helpful when postings sound like what has and is happening to us. For example: talking over tv programs and movies - happens all the time here, but I didn't connect it to brain disease. being highly critical - has been going on for long time, but probably related.
    • CommentAuthorCharlotte
    • CommentTimeNov 10th 2014
     
    https://www.facebook.com/groups/52543721114/

    that is a facebook group - The Association for Frontotemperal degeneration

    You can probably find support and information there too
  1.  
    CarolVT, I was doing the same thing that you were doing - searched for information - when I found this site about 6 years ago. I had no idea what was going on with my DH (dear husband). At the time, he was in his early to mid 50s.

    The stark difference that I have found between AZ and FTD, in the early stages, is that with FTD, the individual has not lost much of their short-term memory. This is why doctors can't figure out what is going on. MY DH's doctor also refers to FTD as Pick's. Do a search on this term for some more information. The thing that I find the most upsetting is their lack of "being nice." They don't have any idea that they are so mean sometimes. Also, their personality changes so much. They don't consider our feelings. If they get hurt, the whole world caves in; if we get hurt, they don't even notice or act like they don't care. FTD effects the "executive functions," which causes them to not remember how to do usual things, not be able to remember steps to a project, interrupt because they have to say what is on their mind or they won't remember, make very poor decisions (or questioning my good decisions) to the point that there is always some issue going on. Or getting really angry for, what seems to me, no reason at all.

    This is a good site. go back and read everything that you can. It helps a lot to know that you arn't alone.

    Mary!!
    • CommentAuthorCarolVT
    • CommentTimeNov 11th 2014
     
    Mary, I agree. When I first found this site, I read all of Joan's blogs, and so much of it was familiar, and it was such a relief. The stress and change in the marriage relationship was so hard at first, so this site for spouses helped a lot and gave me the courage to do what has to be done. I lurked for a while before registering a few months ago. Alzheimers never seemed to fit because his memory didn't seem that bad. I dismissed FTD at first because it usually shows up younger than my DH. He doesn't fit that in some ways, but it is the closest I've come so far. DH has become the kind of self-centered you describe. I couldn't live with him if I didn't believe it to be disease. A few years ago, I decided, given my lack of appreciation of the situation at the time, that I was not going to make it easy for him; if he wanted out, he was going to have to leave me. I was not going to be driven out. Things are so much better between us now that I have some shred of understanding. He would never have left me. He can't bear to part with old socks.
    Charlotte, I have the AFTD bookmarked also. It is another good site. Thank you.