My 73 year old Father has been diagnosed with this horrible disease. His paranoia has become worse. Everyone is following him, they are all drug addicts,the neighbors have a machine they are using that makes high pitched sounds and banging. The sounds he is hearing aggitates him and raises his blood pressure up.The list goes on and on.The Doctor is one of those following him also,so now he no longer want's to see the neouroligist. He even thinks people have his house wired.
My question is what is a medicine that has been used that works ?
Some Parkinson meds make some symptoms worse for some people with LBD. Some dementia meds make some mobility problems (Parkinsonisms) worse for some people with LBD. But taking Parkinson's meds does not cause LBD. Deposits of alpha-synuclein protein in the brain (named after the researcher who first discovered the deposits in brains of Parkinson's patients) are responsible for both Parkinson's and Lewy Body Dementia symptoms. I'm not trying to be overly picky, but I don't want someone with Parkinson's Disease to think they shouldn't try medicines because they might cause dementia. No, but if the dementia is already there some symptoms can become worse, in which case reducing the medicine dose is one option. I've known caregivers who have had to decide which symptoms were worse and balance the treatments accordingly.
Fortunately for most of the 9.5 years my husband had LBD we didn't have to make those tough choices and drugs for both the Parkinson symptoms and the dementia seemed to be effective without interfering with each other.
As you say, Mimara, each case is different. Treatments are often more effective for this type of dementia than for some others (no cure though) that it is worthwhile seeking a doctor who is very experienced in this particular disease.
She was having hallucinations and delusions on a daily basis. It got to the point I couldn't go into her room because she was convinced I was trying to kill her. That's when we had to put her in the observation unit in the hospital for 3 days. Finding a psychologist who took the time to listen to me and listen to my concerns and research is what made the biggest difference for us.
I started noticing she would lock her fingers pointing towards the TV, she would tell us the FBI was communicating with her through her oxygen tube, she "saw" neighbors across the street looking through the windows (they weren't), she "heard" people in the basement and told me constantly she heard music and people having a party downstairs (we don't have a basement or a downstairs). She also believed I would stand at the end of her bed and pull constantly on her oxygen hose.
I took her to a mental health expert (psychologist specializing in dementia) and she came to the same conclusion. We took her off the Buspirone and put her on Seroquel. I saw a change literally in 48 hours! She has been on that med for almost 8 months now and I would call it a lifesaver at this point. I have only been slapped once or twice, and she has what we call "mini meltdowns" rarely now, and usually while she's getting ready for bed. Her "tantrums" used to last up to 6 hours and now they tend to max at 15 minutes. Our house is now filled more with laughter than screaming and cursing! :)
My opinion: Do your research. If one med doesn't seem to be working, consider trying a different one. I learned that people with Lewy's tend to be highly sensitive to certain anti-psychotic meds and they can actually make their condition worse rather than calming them. That's what happened with my Grandma.
You are their biggest advocate! I had to make doctors listen to me when they didn't want to. But I can be pretty pushy sometimes ;)
Also, at night, she takes Melatonin along with her other meds. And, since she's been on the Seroquel she usually will sleep through the night, where before, she was waking up, sometimes, up to 6 times a night!