Hi All, my mother suffers with Parkinson’s disease and has recently started hallucinating, the Dr thinks it may be caused by Ropinirole. Any comments welcomed. Thanks.
The Doctor needs to get your Mother off these tablets and on to something more suitable. Contact the Neurologist or their Secretary to give you a new prescription for your Mother. Do you have a Parkinsons Nurse you can speak to ? If so talk to them as well about the problem, they can offer advice and give you help in getting the right medication for your Mother. I took a drug which gave me hallucinations and made me say things that weren’t true, it was horrible for my wife as she bore most of the brunt of it all.
Les
Thank you for the reply. The specialist has reduced her dose of Ropinirole but she’s much the same, it’s like getting blood out of a stone just for her to see them.
Hi @VelvetBiddy,
I noticed that you’ve spoken to your mum’s doctor as well as her Parkinson’s specialist. However, if you’d like more support on this, please feel free to give our helpline a call so they can arrange for a Parkinson’s nurse to advise you on your mum’s condition.
Many thanks,
Reah
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Thank you Reah, but the PNS is currently on the sick.
Hi @VelvetBiddy
My Mum is in exactly the same position as your mum. The Parkinson specialist reduced her Ropinirole but the only effect that had was to reduce her mobility and the hallucinations increased. They are now putting her on medication to help reduce the hallucinations and it is also used for people with alzheimers (Rivastigimine). This drug has a list of side effects as long as your arm so we’re not keen for her to be taking it but she is willing to give it a go. It is a little alarming to watch my Mum change before my eyes especially as she is convinced that the hallucinations are true. My parents’ house is gradually filling up with other people that she can see. I’m working on the attitude, who am I to tell her they are not there. There is no point in challenging her about them. I hope I am doing the right thing. The problem I have is that I can’t get to see my parents because of Covid so can only help with the aid of social media calls. Unfortunately, that then means my Mum is convinced I am in the house visiting and this is making things even harder for my Dad.
Hi @Suebedoo, 
Welcome to the Parkinson’s UK forum.
I’m truly sorry to hear that your mum has been going through this, I’m sure this must be really distressing for not only her, but for you and your family. As you’ve seen hallucinations as a side effect to Parkinson’s related medication is quite a common theme on the forum so you are not alone. We have a lot of helpful information on the Parkinson’s UK website which you can find here: https://www.parkinsons.org.uk/information-and-support/hallucinations-and-delusions-side-effect
We are also aware that there has been increased reporting of hallucinations and distressing hallucinations in people with Parkinson’s during the current pandemic due to lock down restrictions. We have spoke to various neuropsychologists and they have advised the following for both carers and for people with Parkinson’s:
Person with Parkinson’s
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Normalise experience (hallucinations are common in PD) recognize that hallucinations do not mean “I am going crazy.” and can be handled quite well.
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Check time of onset of symptoms (consider pushing meds forward/back a little) or scheduling activities
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Stimulating activities can help distract someone away from their hallucination.
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Encourage good sleep habits
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Consider their environment - ensure adequate lighting to decrease misinterpretations of shadows and removal/covering of objects from which hallucinations may emerge.
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Healthy lifestyle – e.g. exercise, regular eating
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Do not react to these visions or sounds—dismiss them (if insight preserved)
Carers
- It is important not to argue with the person experiencing the hallucination, e.g. denying what they are seeing as real. It is advised to acknowledge and distract rather than engage/join in.
- Consider a pre-agreed ‘code’ to reorientation in the case of carer misidentification e.g. a specific ring, necklace etc…
For more information and support, please contact our confidential helpline on 0808 600 0303 or email us at [email protected].
Best wishes,
Reah
Forum Community Manager