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Parkinson's hallucinations

(6 Posts)
Madrigal Fri 19-Jul-13 12:40:31

My sister has Parkinson's and I know that the drugs she is taking cause her to hallucinate from time to time, but when I spoke to her earlier today she accused me of screaming horrible things about her sons to her while we we on holiday about a month ago.

I realise this was probably caused by the impact the drugs have on her but it was very upsetting. It's the first time this has happened to me and I'm at a loss to know how to deal with it.

What I did was to quietly remind her that I loved her and her sons and that it would be very out of character for me to behave like that. he acknowledged that but still felt she was recalling something that had actually happened. After we'd chatted about other things she became calmer and I suggested she have a word with her consultant about the particular drug that seems to cause these hallucinations to see if there is an alternative. This is distressing to her as well as me, and it's heartbreaking to know that she's having these thoughts.

Does anyone have any experience of this that I could learn from?

Mishap Fri 19-Jul-13 12:54:02

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.

gracesmum Fri 19-Jul-13 13:07:43

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 blush. Dad just used to say "Yes dear" and go back to his paper. sad

Brendawymms Fri 19-Jul-13 20:02:14

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.

Madrigal Fri 19-Jul-13 21:41:17

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

Mishap Fri 19-Jul-13 21:52:47

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.