Parkinson's hallucinations

My OH has PD. There have been occasions (in his case during the night) when things are a bit strange in that direction. I do think you handled it perfectly, especially in not taking it personally and being as objective and calm as you could.

PD is a b****r of a disease and there are so many effects of the disease itself and of the treatments that most people have no idea at all about. They just think it makes you shake a bit, but in fact the list of problems in so many body systems appears endless from where I am sitting.

Go on to the Parkinsons UK website - there is so much information there and also a helpline which I have found unfailingly helpful. It is also likely that your sister has a Parkinsons nurse - you can talk to him/her in confidence - I have done this before. You can find the name on the website of the health authority (now called a clinical commissioning group!) for your sister's area. It would not be disloyal to do this - it would enable you to help her better.

She is lucky to have such a caring sister.

My Mum suffered from Parkinsons and I didn't know about the hallucinaations., She used to imagine some weird things but often they were caused by urinary infections to which she was prone. I wish I had known about the effect of the medication, I might have been more patient . Dad just used to say "Yes dear" and go back to his paper.

Many Parkinson's suffered have hallucinating but they tend to be different from hallucinations suffered by people with mental health issues. Parkinson's hallucinations are visual only. They are not auditory or any of te other senses usually.
Talk to your sisters GP Madrigal, or to the Parkinson's specialist nurse who will know more than the GP, about what has happened as its not a typical reaction and not one I am aware of. It was always part of training as one way of being aware of the difference between MH and Parkinson's.

Your approach was very much the right one but its worth checking the events out.

Thank you, such useful advice. My sister has never mentioned having a Parkinson's nurse but I'll investigate.

There is a disease that is related to Parkinsons that is called Lewy Body Disease. The symptoms are very similar, but hallucinations are much more frequent and pronounced and sadly it does progress to frank dementia. My mother had this. She was initially diagnosed with PD, but it gradually became clear what the real nature of the problem was. I do not say this to worry you - iit is best to be clear about what the situation is. Knowledge is power and all that. My poor mum kept seeing babies on the sofa and was always worried that we might sit on them! Her hallucinations were never frightening ones and she did not seem the least disturbed by them.

The Parkinsons UK website will help you with this as well.

My OH has lots of help - speech, nutrition, physio - as well as his drug regime (which is very complicated as he has a heart problem as well). The Parkinsons nurse can keep tabs on symptoms as they develop and ensure that the proper treatment starts.

Another thing to think about is this hot weather - if your sister is at all dehydrated this will have an impact on the drugs and their concentration and effects.

My OH is on several drugs and the consultant needs to be kept up to speed on any problems so that interactions can be considered. Everyone responds differently.

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My late OH had PD. We struggled with his meds which themselves caused a whole raft of problems, and I was often tempted to bin the lot. There was little evidence that they were helping him in any way.
He became insane by the end. His life was a misery. He believed that I and others were trying to kill him ... that there was a machine in the corner of the room that would chop him up, that the carers were Russian spies ... etc. And he would say inappropriate sexual things to people.
Many attempts were made to help him with this and all failed. It is a miserable disease.
Our PD nurse was very good and responsive and his drugs were altered a lot ... the team need feedback so they can get her on the right treatment.

Thread from 2013.

Thanks for spotting that.

I don't think the fact that it is an old thread matters, PD sufferers are still having hallucinations. My DH has just got much worse and I was glad to see this thread to find out how others managed the situation. We have an appointment with a consultant next week and hopefully they will review the medication and offer some advice. I am at the point where I dare not leave him, there have been falls this week and other things which I haven't had to tackle before so I'm pinning a lot of hope on this appointment.

LuckyGirl
A lot of us cried for you at that awful time. 😥

rubysong

I don't think the fact that it is an old thread matters, PD sufferers are still having hallucinations. My DH has just got much worse and I was glad to see this thread to find out how others managed the situation. We have an appointment with a consultant next week and hopefully they will review the medication and offer some advice. I am at the point where I dare not leave him, there have been falls this week and other things which I haven't had to tackle before so I'm pinning a lot of hope on this appointment.

My dad also had many hallucinations with Parkinsons. In fact, towards the end he was rarely with us. He once turned to my mother and asked her if he had to go to school the next day. I'm not convinced the drugs did anything at all for him, apart from the fact that the wrong ones were often prescribed. There was a battle between the Parkinsons consultant and his doctor at one point about what drugs he could be prescribed as the doctor disagreed with the consultant.

I've heard of this .
It's a side effect of L - dopa the standard drug used to treat Parkinsons disease .
Can her dosage be reduced ?
Can her sons make an appointment with her GP to discuss it ?

One of the people I used to visit in hospital had Parkinson's and hallucinated. He was well aware of this and talked about the hallucinations although he was an onlooker rather than a sufferer from them. For example he said how nice it was when his late wife appeared. Also he described how a large plant was growing up the wall behind me and flowering. All pleasant enough but scary hallucinations must be awful for people.

petra

LuckyGirl
A lot of us cried for you at that awful time. 😥

Thank you for this. It was good to have the support of gransnetters throughout that dreadful time.

rubysong

I don't think the fact that it is an old thread matters, PD sufferers are still having hallucinations. My DH has just got much worse and I was glad to see this thread to find out how others managed the situation. We have an appointment with a consultant next week and hopefully they will review the medication and offer some advice. I am at the point where I dare not leave him, there have been falls this week and other things which I haven't had to tackle before so I'm pinning a lot of hope on this appointment.

I am sorry you are going through this. I do know how very difficult. I found with my OH that the meds were a mixed blessing and the side effects extremely troublesome. It is so hard to get it right. If he is falling this needs particular attention as a fracture and hospitalisation can cause a serious decline, as happened with my OH.
I hope that there is a thorough review of his meds and that this will be helpful. I send fellow feeling and a handhold.

You handled it very well. Staying calm, reassuring her, and not arguing about the memory is usually the best approach.

Hallucinations can happen with some Parkinson’s medications, so it’s good that you suggested she speak with her doctor about it.

Try not to take it personally, it’s often the medication or condition, not how she truly feels. 💛