Jason Lane clearly remembers the turning point that saved his marriage. It was late on a Sunday afternoon when he received a disturbing text message from his wife Kirstie, who has Parkinson’s disease.
She had been living apart from Jason and their two children for months, after moving out to live with another man.
“I can’t continue with this anymore, it would be better if you lived your life without me,” she wrote. “Tell the kids I love them, but I won’t be here anymore.”
With his heart pounding, Jason ran to Kirstie’s flat and managed to break in just in time to help his estranged wife, who had attempted suicide. “It was at this point that her neurology team decided she was too difficult to treat and referred her to St George’s Hospital in London,” says Jason.
‘It was there that we first met a new consultant who took a look at the Parkinson’s medication Kirstie was taking – a skin patch that delivered 16mg of rotigotine into her system – and she was very concerned that Kirstie was on such a high dose got. .’
Horror: Kirstie and Jason are determined to tell their story as a warning to others
It was a light bulb moment for the couple. Because Kirstie’s behavior and personality had changed dramatically in the 18 months she had been on this dose.
She had become addicted to spending money in charity shops and returned home every day with ‘pockets full of tat’ that she would never wear or use. She woke up early in the morning and decided to do “stupid things” like paint a room on a whim.
She would regularly fly into uncontrollable rage – at one point holding a knife to Jason. And then she became fixated on a man she met briefly on a weekend getaway, and within weeks she 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 selfish. But it is well known that these medications can cause side effects of compulsive behavior. Yet we were not warned about it at the time. I put my family through hell.’
Their special story is featured on the Movers and Shakers podcast, a series about life with Parkinson’s, in which the latest episode focuses on the embarrassing side of the disease.
Today the couple, who live in Ashford, Middlesex, say that despite their harrowing experiences, their relationship is stronger than ever.
Jason, 45, a senior manager in the NHS, and Kirstie, 41, a vascular nurse, met in an internet chatroom 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 birth, 14-year-old son Samual arrived.
Kirstie had had a slight limp and often stumbled since she was 20 – ‘but after Samuel was born my limp was much worse and my handwriting was barely legible’.
Doctors had previously put her limp down to an old ankle injury, even suggesting it was “just in my mind.” Kirstie’s younger brother Shaun was diagnosed with Parkinson’s at the age of 21 – “and because my brother was diagnosed so young, the doctors thought I might be making it up,” says Kirstie.
‘In the summer of 2010 I visited a neurologist and after examination I was told that I did have Parkinson’s. It was a relief. Jason and I were concerned that it could be something like multiple sclerosis or Huntington’s disease, so out of the three, Parkinson’s felt like something we could deal with, even though I was still very young, at 27, to to be diagnosed.’
Parkinson’s disease, which affects around 150,000 people in Britain, is caused by the loss of dopamine in the brain – ‘we all lose it as we get older, but for unknown reasons people who develop Parkinson’s disease tend to lose it faster. explains Ray Chaudhuri, 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’s critical for movement – everything from waving your arms while walking to blinking and facial expressions – but also for non-movement things like sense of smell, pain and anxiety. .’
Kirstie was given a low dose of rasagiline – a drug that slows the breakdown of dopamine – which kept her symptoms under control 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 helpful,’ says Professor Chaudhuri.
‘You can’t deliver dopamine directly to the brain, so oral medications work by crossing the blood and stomach barrier. A skin patch bypasses the stomach, but it is an inexact science and the amounts can become erratic and in some patients (about 9 percent of the patch) it can cause unprovoked reactions such as behavioral problems,” he explains.
‘Dopamine is linked to a cocaine derivative and activates the reward centers of the brain and can thus cause addictive reward-seeking behaviour. Research in Germany recently showed that some patients taking these drugs binge eat in the middle of the night, especially chocolate because it contains dopamine.’
Over the next few years, as the dose of the drug was increased to control her worsening symptoms, Kirstie’s behavior became unrecognizable.
‘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 things from thrift stores. I came home with weird things I would never wear or the exact same pair of shoes I already had. I would get up in the early hours to clean out or clear out cupboards.”
She adds, “Jason and I argued so much. I remember one time I flew into a rage and I have no idea what started it, but I remember holding a knife in my hand with Jason in front of me. Thank God I didn’t do anything stupid.
‘I don’t remember much about it now, but it must have been terrifying for him. And the children had no idea what was happening to their mother.”
At the time, Kirstie did not realize that her behavior was out of character. And while Jason was understandably confused, there was more to come. In 2017, Kirstie went away for a weekend with friends: when she got 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 in love, so I told Jason I was going to live with him. He was a property developer, was also married and had several flats in the area, so I moved into one of them. It must have been hell for Jason and the kids.”
Jason nods. ‘I did everything I could to make her see sense, even inviting this man over to our house to try to fix everything – but she was so fixated on him that I realized I was never going to get through it.
“It never occurred to me at the time that the drugs could be causing this,” he says.
Over the past decade, neurologists have become more aware of this bizarre side effect known as impulse control disorder. “It includes several behavioral problems, such as hypersexuality, compulsive gambling and shopping, as well as compulsive eating,” explains Professor Chaudhuri.
‘It is specifically associated with any dopamine replacement therapy and all medications for Parkinson’s disease carry that risk. We are now very aware of it and patients are closely monitored. It is often younger patients who are susceptible to this. The use of these medications is declining worldwide precisely because of these behavioral problems.’
After Kirstie’s suicide attempt in November 2018, she returned to the family home and her consultant gradually reduced her dose of rotigotine, from 16 mg to the 2 mg she now takes. “Once I came off my medication, I started to feel more like my old self,” she says.
‘But I was shocked by what I had done to my family. I feel very lucky that Jason has been so patient and that we are so much stronger now as a couple. But I would 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 an annual retreat. ‘We’ve met other couples who are going through the same thing, but often they don’t have the same, honest relationship as us, so they can’t tell their other halves that they’re in love with someone else,’ says Kirstie.
‘I am convinced that this side effect will have destroyed marriages. But it’s something no one mentions. Jason and I want to talk about this openly to help others. Because it almost destroyed us too.”
Doctor TikTok – Experts review viral health trends
This week: A digital detox for mental health
What social media says: Ironic it may seem, but #digitaldetox was viewed nearly 90 million times at last count. A digital detox – that is, going offline without screens or the internet – is touted as beneficial for mental health.
The expert’s opinion: “Excessive screen time and social media use have been linked to depression, anxiety and feelings of loneliness,” says psychotherapist Kamalyn Kaur. “Disconnecting this could provide a much-needed reprieve.”
Georgina Sturmer, a counselor accredited by the British Association for Counseling and Psychotherapy, added: ‘Deep down, most of us know if our screen use is intruding on everyday life. But if we need a more concrete measure, we can use trackers or apps to see how much screen time we use.
‘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: you may be full of excuses; or you notice an increasing level of fear of losing connection. This is a sign that it is a problem.’
If you want to partake 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 organize to distance yourself from your devices. Maybe you need a notepad, a pocket map of AZ, or a landline.”