I became hooked on buying charity shop clothes – then left my husband for a man I’d just met… all because of my Parkinson’s drug

Jason Lane clearly remembers the turning point that saved his marriage. It was late on a Sunday afternoon when he received a worrying text from his wife, Kirstie, who has Parkinson’s disease.

She had been living apart from Jason and their two children for months, having moved out to be with another man.

‘I can’t carry on with this anymore, it would be better if you lived your life without me,’ she wrote. ‘Tell the kids I love them but I’m not going to be here anymore’.

Heart pounding, Jason raced to Kirstie’s flat and managed to break in just in time to help his estranged wife, who had attempted suicide. ‘It was at that point her neurology team decided she was too difficult to manage and referred her to St George’s Hospital in London,’ says Jason.

‘It was there that we first met a new consultant who took one look at the Parkinson’s medication Kirstie was on — a skin patch that delivered 16mg of rotigotine into her system — and she was very concerned that Kirstie had been put on such a high dose.’

Scare: Kirstie and Jason are determined to tell their story as a warning to others

It was a lightbulb moment for the couple. Because in the 18 months she had been on this dose, Kirstie’s behaviour and personality had changed dramatically.

She’d become hooked on spending money in charity shops, returning home on a daily basis with ‘bags of tat’ she’d never wear or use. She would wake up in the early hours of the morning and decide to do ‘stupid things’, such as start painting a room on the spur of the moment.

She would regularly fly into uncontrollable rages — at one point holding a knife to Jason. And then she became fixated with a man she had briefly met on a weekend break, and within weeks, had abandoned her family to be with him.

‘I feel so guilty for what I did,’ says Kirstie. ‘What’s worse is that I know people will still look at me now and think I was being selfish. But it’s well known that these drugs can cause compulsive behaviour side-effects. Yet we weren’t warned about it at the time. I put my family through hell.’

Their extraordinary story features on the Movers and Shakers podcast, a series about life with Parkinson’s, which, in the latest episode, focuses on the embarrassing side of the disease.

Today, the couple, who live in Ashford, Middlesex, say that despite their harrowing experience, their relationship is stronger than ever.

Jason, 45, a senior manager in the NHS, and Kirstie, 41 a vascular nurse specialist, met on an internet chat room in 2003 and within two months were in love and living together. Daughter Kasie, now 18, followed two years later; and the couple married in 2006. In 2009, after a traumatic labour, son Samual, 14, arrived.

Kirstie had had a slight limp since her 20s and often tripped — ‘but after Samual’s birth, my limping was much worse and my handwriting was barely legible’.

Doctors had previously put her limp down to an old ankle injury, and even suggested it was ‘all in my mind’. Kirstie’s younger brother Shaun had been diagnosed with Parkinson’s at the age of 21 — ‘and because my brother had been diagnosed so young the doctors thought I might be making it up’, says Kirstie.

‘I saw a neurologist in summer 2010 and after tests was told I did have Parkinson’s after all. It was a relief. Jason and I had been worried it could be something like multiple sclerosis or Huntington’s, so out of the three, Parkinson’s felt like something we could cope with, though I was still very young, at 27, to be diagnosed.’

Parkinson’s disease, which affects around 150,000 people in the UK, is caused by the loss of dopamine in the brain — ‘we all lose it as we age, but for reasons that are not clear, people who develop Parkinson’s tend to lose it quicker,’ explains Ray Chaudhuri, a professor of neurology/movement disorders at King’s College Hospital in London, and a world authority on the disease. 

‘It’s one of the most important brain chemicals we have and it is critical for movement — everything from swinging your arms when you’re walking to blinking and face expressions — as well as non-movement, such as sense of smell, pain and anxiety.’

Kirstie was put on a low dose of rasagiline — a drug that slows down the breakdown of dopamine — which controlled her symptoms for the next five years. But in her mid-30s, they returned, worse than before and she was offered a patch containing rotigotine, which mimics the effects of dopamine.

‘Rotigotine patches can be useful,’ says Professor Chaudhuri.

‘You can’t put dopamine directly into the brain so oral drugs work by going through the blood and stomach barriers. A skin patch bypasses the stomach, but it’s an inexact science and the amounts can become erratic and in some patients — around 9 per cent on the patch — it can produce unprovoked reactions such as behavioural issues,’ he explains.

‘Dopamine is linked to a cocaine derivative and activates the reward centres of the brain and thus can produce reward-seeking addictive behaviours. Research in Germany recently showed that some patients on these drugs are binge eating in the middle of the night, particularly chocolate because it contains dopamine.’ 

Over the following years, as the dose of the drug was increased to control her worsening symptoms, Kirstie’s behaviour became unrecognisable.

‘It was like I was on a high all the time, my head was like a washing machine, my whole body felt like a merry-go-round and I could never sit down,’ says Kirstie.

‘I became obsessed with things, like buying stuff in charity shops. I’d come home with weird things I’d never wear or the exact same pair of shoes I already owned. I’d get up in the early hours to clean or clear out cupboards.’

She adds: ‘Jason and I were arguing so much. I remember once flying into a rage and I have no idea what started it, but recall holding a knife in my hand with Jason in front of me. Thank goodness I didn’t do anything stupid.

‘I don’t remember much about any of this now but it must have been terrifying for him. And the children had no idea what was happening to their mum.’

At the time Kirstie didn’t realise her behaviour was out of character. And while Jason was understandably confused, more was to come. In 2017 Kirstie went away for a weekend with friends: when she came home, she told Jason she had met someone else.

‘I can’t believe I did this to Jason but because we’ve always been open with each other — I told him I couldn’t stop thinking about this other man,’ says Kirstie.

‘I was infatuated, so I told Jason I was going to live with him. He was a property developer who was also married and had several flats in the area so I moved into one of those. It must have been hell for Jason and the children.’

Jason nods. ‘I did everything I could to make her see sense, even inviting this man into our home to try to sort it all out — but she was so fixated on him that I realised I was never going to get through.

‘It never occurred to me at the time that it might be the drugs causing this’, he says.

Over the past decade or so, neurologists have become more aware of this bizarre side-effect, known as impulse-control disorder. ‘It spans several behavioural issues such as hypersexuality, compulsive gambling and shopping as well as compulsive eating,’ explains Professor Chaudhuri.

‘It’s specifically associated with any dopamine-replacement therapy and all drugs for Parkinson’s carry that risk. We are now very aware of it and patients are monitored closely. It’s often younger patients who are susceptible. The use of these drugs is actually reducing globally because of these behavioural issues.’

After Kirstie’s suicide attempt in November 2018 she returned to the family home and her consultant gradually reduced her rotigotine dose, from 16mg to the 2mg she’s on now. ‘Once my medication was reduced I began to feel more like the old me,’ she says.

‘But I was mortified by what I’d done to my family. I am very lucky that Jason has been so patient and we are so much stronger as a couple now. But I’d never wish it on my worst enemy.’

Yet their story is not unique — the couple run a Parkinson’s support group, Spelthorne Parkies, with weekly events and a yearly retreat. ‘We’ve met other couples who are going through the same thing, but often they don’t have the same, honest relationship we have so they can’t tell their other halves that they’re infatuated with another person,’ says Kirstie.

‘I’m convinced this side-effect will have broken up marriages. But it’s something no one mentions. Jason and I want to talk about this openly to help others. Because it nearly destroyed us as well.’


Doctor TikTok – Experts assess viral health trends

This week: A digital detox for mental health

What social media says: Ironic it may seem, but #digitaldetox had almost 90 million views at last count. A digital detox — i.e. going offline without screens or the internet — is touted as beneficial for mental health.

The expert’s verdict: ‘Excessive screen time and social media usage have been linked to depression, anxiety and feelings of loneliness,’ says psychotherapist Kamalyn Kaur. ‘Disconnecting from this can provide a much needed reprieve.’

Georgina Sturmer, a counsellor accredited by the British Association for Counselling and Psychotherapy, adds: ‘Deep down most of us know whether our screen use is encroaching on everyday life. But if we need a more concrete measure, we can use trackers or apps to see how much screen time we are using.

‘We can also test ourselves. Consider leaving the house without your device, or turning it off for a while. Notice what happens when you consider this: maybe you’re full of excuses; or you notice a rising level of anxiety about being disconnected. This is a sign that it’s a problem.’

If you want to engage in a digital detox, whether it’s for an hour, a day, or a weekend, preparation is key, says Georgina Sturmer. ‘Think about what you need to do or organise in order to step away from your devices. Maybe you’ll need a notepad, pocket A-Z map or a landline.’

Read more at DailyMail.co.uk