Some Parkinson's medication can cause side effects known as impulsive and compulsive behaviours. These can include gambling, hypersexuality and shopping. Most people don't experience these side effects, but they can have a big impact on people's lives when they do. Here, we share 3 people's different stories and explain how to get help if you are living with these behaviours.
My crafting obsession: Caz's story
"It took over my life," explains Caz. "Whether it was a dress I was making or a painting I was doing, I'd be up all night working on it. My husband Steve would wake up at 3am and say 'come on, come to bed – you must be tired'. But I couldn't stop. When it was at its worst, I was up for 3 days solid with no sleep."
Caz Ibberson was diagnosed with Parkinson's aged 46, after 4 years of uncertainty about her symptoms. She explains that it was a type of drug called ropinirole that was the cause of her obsessive behaviour. "The 4 years before my diagnosis were difficult. I slowly developed a range of symptoms – from a constant, unexplained feeling of motion sickness, to confusion, bladder problems, a loss of smell and a tremor. Eventually, it was a group of student doctors who pinpointed it was Parkinson's, and a consultant prescribed me ropinirole on the same day. It was such a relief, not only to have a diagnosis and to know what was wrong, but to also be given treatment that I was told would make me feel better."
Caz explains that the medication changed her life dramatically at first. "I had more energy and my symptoms really improved. I'd been so self-conscious going out, being stared at all the time. I finally felt like I could live my life again."
Caz decided that she wanted to give something back to Parkinson's UK, who she explained had given her a lot of support during the diagnosis period.
"My main hobby was making crafts, so I decided I would make purses and sell them to raise some funds for the charity," Caz explains. "I started making other things – bags, hats, jewellery. I calculated the costs so I could invest in more materials to make more things, and in turn make more profit. I got such a buzz from it and it really gave me a sense of purpose."
I was becoming happier each day, and with that I started buying more and more things.
Over a 2-year period, Caz's medication was gradually upped each time she saw a consultant, until eventually she was on 14mg of ropinirole. "I think the meds make you feel like you’re on a bit of a high,” she says. "I was becoming happier each day, and with that I started buying more and more things. I've always been a bit of a charity shop fan, and I'd started buying lots of clothes. I'd lost 4 stone so none of my old clothes fitted. I would buy a dress, then go back and buy another the day after. I was also buying an excessive amount of fabric to make things with and was staying up all night just to finish the dozens of craft projects I'd started."
Caz describes how by this point she'd started lying to her husband about her spending. "One day he asked me about some money and I said I'd spent it on a bill, when I'd actually spent it on more crafts and clothes. I was starting to spend £40, £70 a week, on all sorts of things – silly things I didn't need – which of course started to add up. I thought, ‘what am I doing to this man who cares for me so much?'"
Not only had Caz's hobby turned into an obsession, but she’d started smoking again after 13 years of quitting. Caz eventually broke down, describing the moment she burst into tears when her husband came home. "I was in the loft hiding fabrics and I just couldn’t handle it anymore. I knew there was something wrong with me and that my behaviour wasn’t normal," she adds.
Her husband Steve phoned her Parkinson's nurse who visited the next morning. Almost immediately she explained that it was a side effect of the medication that was causing the problems and recommended that she change her medication. "On the day I was diagnosed the consultant had briefly mentioned side effects. But when you’re being told you have Parkinson’s you don’t really think too much about things like that as you’re trying to take everything else in."
Caz is keen to spread the word about her experience and feels strongly that people should be informed about side effects. She adds: "I think there’s a taboo around talking about these types of problems. I know people who won't tell their friends or family about it, nevermind a consultant, who is essentially a stranger. So I feel there are a lot more people than we actually know about who are living with this.
"People can feel ashamed. This is why I speak openly about it – I want to break that taboo. People shouldn't feel bad when it’s not their fault."
And how is Caz doing now? "Things have improved since. I take a lot of other Parkinson’s drugs to keep my symptoms at bay, and of course those come with other side effects. And some people point out that I still do crafts. But it's different, because I now know the difference between an obsession and a hobby."
My husband's spending problem: Margaret's story
My husband Trevor was a chemical engineer and worked in the oil and gas industry for over 40 years. Trevor loved his family and was a hands-on dad to our 4 children, coaching the boys at rugby and always cheering his daughter on at netball and hockey.
In 2009 he was diagnosed with Parkinson’s. He decided to see a consultant privately and was put on ropinirole. We were advised that it might make him gamble but as he'd never really gambled before we were sceptical. Also, the consultant said it shouldn't affect Trevor, so we took his word for it.
Trevor was made redundant not long after and wanted to invest his redundancy money. He found a site on the internet and invested £20,000. I wasn’t aware of this at the time. He then changed his mind but was told that if he wanted his money back he had to pay £3,000.
I don’t know how many times he sent money before I became aware of it – at one point he sent £6,000 in one week. It was always to somewhere in the Philippines. We brought it up with him as a family but he didn't take any notice and became childlike when it was raised.
I forced him to close his account, leaving mine and a joint account open. I looked after his salary and would leave enough money in the joint account for shopping, petrol etc.
Not long after I found out he had cashed in an ISA of £25,000 and taken out another credit card and spent £16,000 on that. He couldn’t see that he had done anything wrong.
We took him to see a doctor and they changed his medication to sinamet, and monitored him. We sorted things out and carried on, and he retired from his new job, and was due to receive an £8,000 lump sum. When I asked when we were getting it, he replied he had sent it to the people in the Philippines. I was completely devastated.
There was no reasoning with him and I felt completely powerless. Even after this he would still beg me with tears in his eyes for money to send them. He sent them around £100,000 altogether. We tried to get the police involved but because it was always cash there was nothing much they could do.
Tragically, in summer 2014, Trevor died in an accident. Ironically, he had taken out accidental life insurance. If he had not kept up this policy, I might have had to sell the house. This proved to me that it was the medication and not Trevor that caused this dreadful situation.
My gambling addiction: Ricky's story
In 2012 I started taking pramipexole for my Parkinson's. Around the same time I developed a gambling addiction. Before starting the treatment I would gamble very occasionally, maybe just the odd lottery ticket or a bet on the horses. But soon after I began gambling on fruit machines, and over three months I lost thousands of pounds.
We spoke to professionals about my problem, and we realised it was because of the side effects of my medication I was behaving this way.
It was an intense addiction and I was very secretive about it. I couldn’t live like that anymore and I couldn’t cover it up – not only did I owe a lot of money to people, but I had lost friends because of it. After some time my wife realised something was up and she spoke to my boss. Together they really helped me to turn my life around. We spoke to professionals about my problem, and we realised it was because of the side effects of my medication I was behaving this way.
I was lucky that my wife was so supportive and stood by me. I now have a positive outlook on life and I’m very appreciative of my family and the people around me. I’m Vice Chairman of the Hull Parkinson’s UK group, and it’s been great to surround myself with others in the same situation. Realising I'm not alone has changed my view on everything.
What should I do if I'm experiencing impulsive and compulsive behaviour, or I think someone else is?
Research shows that a type of Parkinson's drug known as 'dopamine agonists' are most likely to cause impulsive and compulsive behaviours. These include ropinirole, pramipexole, rotigotine and bromocriptine.
However, most people take Parkinson's medication without experiencing these side effects so it should not put you off taking your medication to control your symptoms. The important thing is to make sure you get help as soon as possible if there are any issues, before things get out of hand.
- Your specialist can make changes to your medication regime or adjust the doses that you take. This is the most effective way of managing impulsive and compulsive behaviours. This might involve reducing the dose or changing a dopamine agonist prescription to levodopa, or another type of medication.
- Often people who experience impulsive and compulsive behaviour may not realise they have a problem. So if you’re a carer or a family member and have noticed these problems, try to speak to a healthcare professional with an understanding of these side effects, like a Parkinson’s nurse, as soon as possible.
- People have told us that practical measures can be useful, such as asking a trusted family member to keep your credit cards safe, setting up internet blocks on gambling or explicit websites and having voluntary 'bans' from bookmakers.
- You should also talk to your specialist or Parkinson’s nurse about having a general mental health assessment. This is because certain problems, such as depression, may increase the development of impulsive and compulsive behaviour. Treating mental health problems may help to control the behaviour.
Don't stop taking or change your Parkinson's medication without the advice of your specialist or Parkinson's nurse. Any changes have to be made slowly and gradually, and should always be carried out and reviewed by a specialist, because of the risk of withdrawal symptoms.
Read more about managing impulsive and compulsive behaviour