Impulsive and compulsive behaviour - Caz's story

Some Parkinson's medication can cause side effects known as impulsive and compulsive behaviours. Here we meet Caz, who shares how an obsession with crafts affected her. 

"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. At its worst, I was up for 3 days solid with no sleep."

Caz was diagnosed with Parkinson's aged 46, after experiencing symptons for 4 years. She explains: "The 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. 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."

Giving back

Caz says 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 had given her a lot of support during the diagnosis period.

"My main hobby was making crafts, so I thought I would make purses and sell them to raise some funds for the charity," Caz says. "Then 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.

Life-changing medication

Over a 2-year period, Caz's medication was gradually upped each time she saw a consultant. 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 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 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 Steve about her spending. "One day he asked me about some money. 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 a week, then £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 Steve, 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 Steve 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."

Asking for help

Steve phoned Caz's Parkinson's nurse who visited the next morning. Almost immediately Caz's nurse explained that her behaviour was a side effect of the ropinirole medication she was taking. 

"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."

Her nurse changed her meds and things began to improve. "I take a lot of other Parkinson’s drugs to keep my symptoms at bay," says Caz. "Of course those come with other side effects. 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."

Sharing her experiences

Caz is keen to spread the word about her experience and feels strongly that people should be informed about side effects. 

"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."

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. 

Most people take Parkinson's medication without experiencing these side effects, so it shouldn't 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 your loved one's specialist or 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.