Managing hallucinations: Jon's story

I was diagnosed with Parkinson’s just under 19 years ago, in my late 30s. I’d had handwriting problems and a tremor, but this was put down to just getting older. Eventually, I was referred to a consultant and diagnosed with Parkinson’s. 

Overall, my Parkinson’s has progressed fairly steadily, with some ups and downs. I work full time and help take care of my Mum, so I definitely keep busy. 

Hallucinations 

Last year, my Parkinson’s nurse had made some changes to my medication to try and control my symptoms better. That was December and, over the Christmas period, I started seeing writing where there wasn’t any, for example, on the carpet. 

A few times, I felt someone getting into bed behind me. At the time, I thought this might be a vivid dream. 

Visual migraines 

Confirmation that I was having hallucinations came during an online work meeting. I was trying to concentrate, but my eyes were getting tired and my vision was struggling. It was like having a “visual migraine”. 

This time, I was aware I could hear voices. They seemed to be coming from the plumbing, in the style of an old radio show. There was music and singing too. I couldn’t make out the words, but at one point it sounded like “Piece of the Action” by Sweet, which was confusing as it’s certainly not a favourite song! This time, I knew I couldn’t be dreaming. 

The hallucinations concerned me as I had no control over them. Things went quiet for a few months, as I waited to see my consultant. For me, tiredness seemed to be an important trigger for hallucinations. I made sure to rest for a couple of weeks in early January and, after that, didn’t have any hallucinations for a while.

Later, looking outside, I saw ghostly figures approaching the house. I also spotted 2 seagulls in my cat’s basket. Both proceeded to fly out through a closed window. By bedtime, I was creating creatures out of thin air and one of my jackets had sprouted a head. None of them could speak to me though.

I knew throughout that none of it was real. That was reassuring. I kept watching my cat to see if he reacted to what I was seeing, but he didn’t seem to see anything unusual.

Staying connected

I thought about how I could use technology to make things easier while living on my own. 

I set up a Facebook group of friends, colleagues and relatives. They were all people I could trust and would be able to pick up if I was acting unusual. I set the group up initially to make communication easier with people from different parts of my life. 

But I quickly realised that the group could provide a support network, not only to me directly. They could also support each other to help me, for example, by checking in with the group if someone thought something was wrong. 

I gave them information about hallucinations from Parkinson’s UK, so they could learn more about my symptoms. 

You’ve got to have people that you trust, so you can be honest with them. You do sometimes have to cover some quite personal subjects. This can be embarrassing, but people are often very open and sensitive. Avoid making assumptions about other people’s willingness to help. Just ask them. 

Keeping an open outlook 

This is key, especially if you live alone. I go into the office a few times a week, and I enjoy taking part in open-mic nights.

Don’t forget that there are lots of people who don’t have Parkinson’s, but who are managing another long-term health condition. So people can often empathise, even if they don’t have experience of Parkinson’s.

Find out more

Although hallucinations can be upsetting or frightening, they won’t affect everyone with Parkinson’s.

Read our information about hallucinations, or call our helpline on 0808 800 0303.