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@pearlandpeacock

@macbeth What you describe sounds like my husband. I also think he's had it for 6 or 7 years though formally diagnosed only three years ago. It was slow at first but the past couple of months it seems more rapid. I do want him on another drug, the experimental one. It is scary for me and I guess for him, though he is in denial. He can't fill in a form, he puts the info in the wrong blank, etc. And he asks to go home when we are at home. I am his sole caregiver. He likes to go for drives. Once he drove me around, now the role is reversed. I try to go out everyday. I like to shop, so that's mostly what we do and he follows me around and I talk to (or at) him but he never really listens. But then he never did!

The other day while shopping he got disoriented and wanted to take the bus home alone, he asked and was provided directions by a stranger who probably didn't detect any problem. (I was observing from afar.) I had to convince him to stay with me as we were way out in the suburbs.

I am grateful that I was offered in home relief for 20 hours a month!

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Replies to "@macbeth What you describe sounds like my husband. I also think he's had it for 6..."

@pearlandpeacock
I would be very interested in a little more information on the experimental drug you have mentioned. The name of the drug would be sufficient, so I could look it up and ask the doctor about it.

I have never been told what stage my husband is in, at any point. All our doctors seem to do is ask me, every six months, or yearly, at his exams, what any health concerns may be, or, in the case of his neurologist, whether there are any changes.

Since my husband is still pretty "with it" much or most of the time, and still finds his condition depressing and frustrating, adult daycare would not work for him, either. I would like to find some sort of companion care.

If you get a chance, could you post the name of that drug?

Macbeth

I think it is AZT-100, his doctor approved him for the program, she said he's still youngish and has no other health issues. However, she indicated there is more than one possible drug and they will tailor it to him. So we are waiting for a call from the clinic to find out. I will let you know.

@pearlandpeacock

Thank you. I am very interested in hearing how it works out.

Macbeth