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My husband (30 years with PD, he is 65 yrs old ) has the same kinds of hallucinations/delusions. He is always reaching out to touch something but misses it or it disappears. He sits on the floor all the time not sure why. He traces the pattern in the carpet for hours some times. This happens often. He is on Nuplazid for hallucinations/delusions. Some of this has been lessened with drug but certainly not all. Lately he has started to say things that are very inappropriate, swearing, swatting at people, accusatory etc. This disease is so difficult. understatement. Nuplazid nearly 2000.00 per month for 2 pills a day. Medicare has paid for part but it remains very expensive for us to pay. Truly ridiculous > On Apr 22, 2018, at 4:47 PM, Kathleen Cochran <[log in to unmask]> wrote: > > Hi ray and all, I have the same hallucinations others talk about, plus one > nobody's mentioned (I think): tactile delusions, in which, say, tile > grouting morphs into wavy strings I “feel” when I reach out to "touch" > them. That lasts a nanosecond and then the illusion's gone. It’s only > Happened a few Times. > > I did a little reading up on Tasigna. They appear to be going ahead at > Georgetown. The study is fully Enrolled. I Imagine there are lots of Issues > to be worked out. First things first. > > Kathleen > > On 19 April 2018 at 23:02, Rayilyn Brown <[log in to unmask] <mailto:[log in to unmask]>> wrote: > >> Hi Trauti, >> >> I guess I have a negative feeling re all these PD meds. I've taken Rytary >> and Rimantadine for over a year now without trouble but no real help >> either. Wonder how the Tasigna trials are going. The powers that be >> have a big nerve preventing its approval for PD when so many approved PD >> meds have such dreadful side effects. Amantadine helped for about a >> month before all hell broke lose. I'm betting on the Rytary rather than PD >> progression because these are such powerful drugs. >> >> I not only hate getting worse but I can't fight so much anymore. >> >> -----Original Message----- From: Trauti Boyd >> Sent: Wednesday, April 18, 2018 4:12 AM >> To: [log in to unmask] >> Subject: Re: Nuplazid >> >> hi, ray! i'm not sure if amantedine is responsible for nic's >> hallucinations or a progression of pd. my husband is getting them more >> and more these days and the only pd medicine he takes are 2 rytary >> 61/245 per day. naturally, i have no way of knowing if the >> levodopa/carbidopa might be the cause of this. >> >> and yes - it's a hateful disease with no improvements in sight! :( >> >> >> On 4/18/2018 12:26 AM, Rayilyn Brown wrote: >> > how I hate this disease! do you get ANY good from these meds? >>> >>> -----Original Message----- From: Nic Marais >>> Sent: Monday, April 16, 2018 4:21 PM >>> To: [log in to unmask] >>> Subject: Re: Nuplazid >>> >>> Ray >>> >>> Any spot on the wall grows legs and start moving... :-) >>> >>> Visual hals are worse when I take my glasses off. >>> >>> I think what causes the hals is the brain trying to make sense out of the >>> noise (Of running bathwater, flushing toilet, unfocused spots, dark room >>> with lots of shadows). Somehow Amantedine triggers this reaction. >>> >>> Something completely different; >>> >>> When I sit or stand in one position, I progressesively lean over to the >>> left. It's very suttle and drives my wife bonckers. Reading a book, I >>> catch >>> myself hanging on the table with my left hand, my head at an angle of >>> about 45 degrees to the book. The other night I actually fell out of the >>> chair... I suspect it is my lefthand back muscles. My left is more shaky >>> than my right. >>> >>> Regards >>> >>> Nic >>> >>> On Sat, Apr 14, 2018, 08:00 Rayilyn Brown <[log in to unmask]> wrote: >>> >>> Nic >>>> >>>> Now I know what those conversations I hear in living room are. And I'm >>>> getting hard of hearing. >>>> >>>> After a month Amantadine really did I number on me, not so nice. Besides >>>> animals, monsters and dead people a thin saran-like substance was all >>>> over >>>> everything! my neuro said this substance was the most common Amantadine >>>> hallucination. and it helped me but I had to quit it, couldn't stand the >>>> hals. Have taken Rimantadine for over a year and except for one day when >>>> I >>>> thought I was seeing s mall black insects ive ben OK except it doesn't >>>> help >>>> much. nothing does >>>> >>>> -----Original Message----- >>>> From: Nic Marais >>>> Sent: Tuesday, April 10, 2018 5:20 PM >>>> To: [log in to unmask] >>>> Subject: Re: Nuplazid >>>> >>>> I guess I have to get used to all the animals and people in the house. >>>> They >>>> hide behind the bedroom curtains occasionally slipping a hand out and >>>> wave at me. >>>> >>>> They also sit on my bed and turn into big rats running on my bed cover. >>>> This is only the visual hals. The sound ones are the most difficult to >>>> judge if it's reality or a hal... I don't mind the music when I flush the >>>> toilet or run the bathWater. It's rather pleasant ;-) It's the whispers >>>> and >>>> conversations and loud bangs that is very disturbing at times' >>>> >>>> Anybody like to share their hals on the list? Should be interesting ;-) >>>> >>>> Nic 66/24 >>>> >>>> >>>> On Apr 10, 2018 8:08 AM, "Rayilyn Brown" <[log in to unmask]> wrote: >>>> >>>> yes, I saw this too >>>> >>>> >>>> -----Original Message---yo li-- >>> >>> >>>> From: Maryse Schild >>>> Sent: Monday, April 09, 2018 10:35 AM >>>> To: [log in to unmask] <mailto:[log in to unmask]> >>>> Subject: Nuplazid >>>> >>>> beware: >>>> >>>> >>>> >>>> https://edition.cnn.com/2018/04/09/health/parkinsons-drug-nuplazid-invs/index.html <https://edition.cnn.com/2018/04/09/health/parkinsons-drug-nuplazid-invs/index.html> >>>> >>>> maryse >>>> >>>> ---------------------------------------------------------------------- >>>> To sign-off Parkinsn send a message to: mailto: >>>> [log in to unmask] <mailto:[log in to unmask]> >>>> In the body of the message put: signoff parkinsn >>>> >>>> ---------------------------------------------------------------------- >>>> To sign-off Parkinsn send a message to: mailto: >>>> [log in to unmask] >>>> In the body of the message put: signoff parkinsn >>>> >>>> ---------------------------------------------------------------------- >>>> To sign-off Parkinsn send a message to: mailto: >>>> [log in to unmask] >>>> In the body of the message put: signoff parkinsn >>>> >>>> ---------------------------------------------------------------------- >>>> To sign-off Parkinsn send a message to: mailto: >>>> [log in to unmask] >>>> In the body of the message put: signoff parkinsn >>>> >>>> >>> ---------------------------------------------------------------------- >>> To sign-off Parkinsn send a message to: mailto: >>> [log in to unmask] >>> In the body of the message put: signoff parkinsn >>> ---------------------------------------------------------------------- >>> To sign-off Parkinsn send a message to: mailto: >>> [log in to unmask] >>> In the body of the message put: signoff parkinsn >>> >>> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: mailto: >> [log in to unmask] >> In the body of the message put: signoff parkinsn >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: mailto: >> [log in to unmask] >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn