Sister with Lewy Body Disease
My name is Gwen.
My sister was diagnosed with "possible" LBD in 2005.
That was quickly changed to manic depressive with phycosis then
changed back again in 2008 to LBD.
I won't take up a lot of space, I just want to say that the forum has helped a great deal in exposing this dreadful disease. The one thing I
definitely agree on is that most physicians are not aware of how to treat it.
While treating her for MD w/phycosis, she was prescirbed a great deal of drugs ,only to find out none worked for her. She was taken off of most of them after she was diagnosed with LBD(this occured while hospitalized; after a really scary episode)
now she is on the following drugs...
(I hope I am spelling them correctly)
She is on one other, I can't think of the name at the moment.
I am not my sisters primary caregiver, but very much involved in her care.
My sister is now experiencing the following
cries constantly(starts in the evening)
she talks to someone she only sees
she eats really fast, moves her plate aroud because she says that someone is eating out of her plate
thinking ability is not good
she grinds her teeth
she gets aggressive with her daughter at times.
The only thing that her physician does is remove, add, increase, decrease her medicines when she sees him, he only wants to see her every three months.
My questions are for him on our next visit is
1) The drugs above, are some of them serving the same purpose?
2) shouldn't he see her more often?
3) are there test that should be ran on her quite often to keep an eye on
all of the drugs shes taking?
4) Why haven't we seen a big improvement in her symtoms?(diagnosed for sure in June, 2008 for LBD)
5) could most of these drugs be causing her symptoms?
My question for the forum is...will we be asking the right type of questions?
My sister ask us everyday why we cannot help her, my heart goes out....