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jeannegibbs Posted April 2016

Very good research news for Parkinson's and possibly LBD.

This article explains progress being made on a drug to treat psychosis in Parkinson's:

alzforum/news/research-news/pimavanserin-nears-approval-treat-psychosis-parkinsons

[The url is an org type so I think it is allowed, but if it is removed and you are interested, search for the drug's name, pimavanserin.]

This would be the first drug specifically approved for treating psychosis in a neurological condition.

I remember one (of many) conversations I had with Coy's insurance company, explaining that yes, I knew the drug was being used off-label, but that there were NO drugs tested and approved for use with his disease! The drug improved his quality of life. Until better alternatives are developed, please approve this one!!.

So finally having a drug to address behaviors like delusions that works specifically for PD, and doesn't carry the risk level of current drugs is miraculous. (Since PD and LBD both involve the presence of similar bodies of protein in the brain, there is already speculation and hope that the new drug will prove useful there, too.)

If you watched the recent NOVA episode regarding drug research for dementia, you will appreciate how far along the process this drug is. It is not on the market yet, but it is very hopeful news.

cwillie Apr 2016
I don't know the exact med given, only that he died suddenly. Half the family blamed the others for tricking him into the hospital, refusing to see the need. It was seen as better for the family to let sleeping dogs lie.

jeannegibbs Apr 2016
Was your relative given Haldol, cwillie? That is well-known to be contraindicated for people with Lewy Bodies in their brains! Well known by anyone who bothers to look it up, but MANY medical personnel have no clue about LBD. I hope that Robin William's well-publicized case helped break through that ignorance barrier.

Anyway, yes it will be terrific to have some alternative drugs for persons with neurological conditions.

I understand this drug is up for FDA approval in May 2016! Keep your fingers crossed!

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cwillie Apr 2016
JG, I first heard of LBD when an extended family member was finally diagnosed years ago... his problems seemed to baffle his doctors and his behavioural issues were attributed to his problem drinking, or maybe a stroke, or maybe PD. Shortly after his diagnosis he became violently deluded that his wife was unfaithful, family tricked him into going to hospital and he was admitted. It was recommended that he needed medication since he was understandably upset and was violent to staff. He actually got to see a geriatric psychiatrist who admitted the meds were contraindicated for LBD... it didn't end well. Hopefully with an approved med the same thing shouldn't have to happen to another uneducated family.

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