As a doctor and a person with Parkinson's disease, I believe that many people with Parkinson's disease will do best if they take medicines and exercise and try to live life to the fullest. I think that approach has contributed to enabling me to still be active 15 years after diagnosis of Parkinson's disease, and I have read a number of posts from other people at this site who have similar experiences. It seems that we might be re-writing the books about what is supposed to happen to people with this disease. Best wishes to all of you.
David

Glad to have you visit and I hope that you will stay. We can use the expertice. We have several chemists, a microbiologist, a nurse or two, but no MDs that I know of. We did once have a certain actor I am told, but he is away raising money for the effort.

We have individually survived anywhere from a year to twenty years "before the mast" and a fair number have slipped beneath the wakes. But we struggle on in search of the Grail. We might even find it eventually.

Hello,

This is the first time I have ever posted anything. Not even sure I am doing it right. My wife of 52 years was diagnosed with Parkinson's Disease about 5 years ago. She was started on Sinemet right from the start and it seems to mask or eliminate most symtoms. However, for some time now, she has experience hallucinations. Her doctor put her on Azilect and it seemed to make matters worse. At one point she barricaded herself in the bathroom in an effort to get away from the 'people' she sees. We stopped that medication immediately. Has anyone had any experience with hallucintions ?

i've had a few very vivid dreams, no hallucinations. i'm and only sinemet last 5 years.
i suggest you start a new thread on your problem to get the max. response and include more detail - whether doctor is a GP or neuro, wife's age, other health conditions/meds, sinemet formulation/doseage and where you live in case anyone wants to recommend a doctor for a 2nd opinion.

may arise as a result of drug interactions, and/or concurrent damage or alteration of other brain structures, that may be unique to ones particular manifestation of PD symptoms.
Drug interaction hallucinations usually occur in PWP who take several classes of medication. A notorious one are opioid pain relief medication, but the halliucinations seem to be limited in their severity, to such things as "waking dreams". Coupled with high dopa dosing, one is asking for trouble.
Anti depressants can often be totally contraindicated, as the Serotonin transporter is another source of problematical and more profound hallucinations. Parietal lobe changes can also be a source of hallucinations. And hallucinations aren't limited to seeing people that aren't here. There are auditory ( and other sensual) hallucinations that can run from hearing a constant indecipherable noise, to full blown voices. This is a more serious situation because it has been postulated that around 30 percent of PWP, may end up with a dementia syndrome that makesPD all that much more troublesome to deal with. So try dumping medication that is not necessary, or can be replaced. Dopamine agonists are known to directly cause hallucinations , as is sinemet itself . Hope this says something. Cs

Welcome David.... We need doctors that actually understand PD and the only way to understand it is to have it...there is no way to explain what happens in our bodies to an "outsider" (how can a person be in a wheelchair one minute and dancing the next...it really doesn't make much sense), but that is common. Thanks for joining the team on neurotalk.

Mister C asked about hallucinations in people with Parkinson's disease. By the rules of this website, I can't respond directly to the post by Mister C because I have not yet written enough posts.

I know several people with Parkinson's disease who have experienced visual hallucinations. This was quite difficult for them and their families. I do not know much about this topic.

Hallucinations seem to occur less often when people sleep regularly. Perhaps your wife might have fewer hallucinations if she exercised enough every day so she would be tired enough that she would sleep better at night.

I hope your doctors can help your wife decrease the hallucinations.

David

Below is an abstract of a medical article that I thought was outstanding

Fenelon, G., F. Mahieux, et al. (2000). "Hallucinations in Parkinson's disease: prevalence, phenomenology and risk factors." Brain : a journal of neurology 123 ( Pt 4): 733-745.
Hallucinations, mainly of a visual nature, are considered to affect about one-quarter of patients with Parkinson's disease. They are commonly viewed as a side-effect of antiparkinsonian treatment, but other factors may be involved. The aim of this study was to determine the phenomenology, prevalence and risk factors of hallucinations in Parkinson's disease. Two-hundred and sixteen consecutive patients fulfilling clinical criteria for Parkinson's disease were studied. Demographic and clinical variables were recorded, including motor and cognitive status, depressive symptoms and sleep-wake disturbances. Patients with and without hallucinations were compared using non-parametric tests, and logistic regression was applied to significant data. Hallucinations had been present during the previous 3 months in 39.8% of the patients, and fell into three categories: minor forms, consisting of a sensation of a presence (person), a sideways passage (commonly of an animal) or illusions were present in 25.5% of the patients (an isolated occurrence in 14.3%), formed visual hallucinations were present in 22.2% (isolated in 9.3%) and auditory hallucinations were present in 9.7% (isolated in 2.3%). Patients with minor hallucinations had a higher depression score than non-hallucinators but did not differ in other respects. Logistic regression analysis identified three factors independently predictive of formed visual hallucinations: severe cognitive disorders, daytime somnolence and a long duration of Parkinson's disease. These findings indicate that, when minor hallucinations are included, the total prevalence is much higher than previously reported. A simple side-effect of dopaminergic treatment is not sufficient to explain the occurrence of all visual hallucinations. The main risk factor in treated patients is cognitive impairment, although sleep-wake cycle disturbances, and possibly other factors related to the duration of the disease, act as cofactors.

The full article is available free on line but the rules of this website don't allow me to post the link yet.

Hello David

we don't have any rules about anyone not being able to reply to an existing thread

However, you had posted this on our CFF forum which is mainly for website/technical etc questions, so I have moved it here for you as it seems this is where you were trying to reply?