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Caregivers: Dementia | Last Active: Jul 17 1:53pm | Replies (16)
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Hello lena0825. My husband had Lewy Body Dementia and took Nuplazid for 3 yrs. He stopped because it wasn't really helping that much and the expense was so great. We were fortunate to have a grant from the Pan Foundation to cover the cost that MC did not cover. Otherwise we could not have afforded it. If you go to panfoundation.org website, they will ask questions about disease but it depends on whether or not $$'s are available. It is easy to apply and a phone # with people who are very helpful. Good luck. Maybe it will work for your LO. Ruth Ann
Replies to "Hello lena0825. My husband had Lewy Body Dementia and took Nuplazid for 3 yrs. He stopped..."
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Ruth Ann,
Thanks for your reply. Yes ,the cost is great. We just started with Nuplazid - about 3 weeks ago. He doesn't see any difference, but I see some improvement in his engagement in conversation & less frequent / intense REM Sleep Disorder. But his delusions / hallucinations are still there. He's now hearing voices in the house as well. We're going to give it a try until his next neurologist appointment in August. We'll be enrolling with HeatlhWell.org for a grant. That's where Acadia, the manufacturer first sent us. But they said there were others as well as help from Acadia itself. Given our income, I'll be very surprised if we get any funding. I find the cost highway robbery. I don't see why my LO can't increase his quetiapine (Seroquel) as he's only taking 25mg or another atypical antipsychotic. He's a bit dizzy as well, but he was dizzy most of last summer due to heat & sunshine. But then again, he insists on dressing in jeans & a sweatshirt / long sleeved warm shirt - he's always cold. I think he's overdressing. Plus it's nearly impossible to get him to drink enough water to stay hydrated. Again, thanks, your reply was helpful. Pauline (Lena)