Jason Lane clearly remembers the turning point that saved his marriage. It was a Sunday afternoon when he received a worrying text message from his wife Kirstie, who suffers from Parkinson’s disease.
She had been living apart from Jason and her two children for months, as she had moved on to be with another man.
“I can’t go on with this anymore, it would be better if you lived your life without me,” he wrote. ‘Tell the children that I love them but I’m not going to be here anymore.’
With his heart racing, Jason ran to Kirstie’s apartment and managed to get inside just in time to help his ex-wife, who had attempted suicide. “It was at this point that her neurology team decided it was too difficult to treat and referred her to St George’s Hospital, 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 16 mg of rotigotine into her system) and was very concerned that Kirstie had administered such a high dose. .’
Fright: Kirstie and Jason are determined to tell their story as a warning to others.
It was a moment of light for the couple. Because in the 18 months that she had been taking this dose, Kirstie’s behavior and personality had changed dramatically.
She had become addicted to spending money in charity shops and returned home daily with “tattoo bags” she would never use or use. She would wake up early in the morning and decide to do “stupid things,” like suddenly start painting a room.
He regularly had uncontrollable rages and, at one point, pulled a knife on Jason. And then she became obsessed with a man she had met briefly over a weekend and, within weeks, she had abandoned her family to be with him.
“I feel very guilty about what I did,” Kirstie says. ‘The worst thing is that I know people will still look at me and think I was being selfish. But it is well known that these medications can cause compulsive behavior side effects. However, we were not warned about this at the time. I put my family through hell.
Her extraordinary story is featured on the Movers and Shakers podcast, a series about life with Parkinson’s that, in the latest episode, focuses on the shameful 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 NHS manager, and Kirstie, 41, a vascular specialist nurse, met in an internet chat room in 2003 and within two months they were in love and living together. Her daughter Kasie, now 18, followed two years later; and the couple married in 2006. In 2009, after a traumatic birth, their 14-year-old son Samual arrived.
Kirstie had had a slight limp since she was 20 and stumbled frequently, “but after Samual was born, my limp got much worse and my handwriting was barely legible.”
Doctors had previously attributed his limp to an old ankle injury, and even suggested that “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 maybe I was making it up,” Kirstie says.
‘I visited a neurologist in the summer of 2010 and after tests I was told that I had Parkinson’s after all. It was a relief. Jason and I were worried that it might be something like multiple sclerosis or Huntington’s disease, so of the three, Parkinson’s seemed like something we could handle, even though I was still too young, 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 unclear, people who develop Parkinson’s tend to to lose it faster.” ‘ explains Ray Chaudhuri, professor of neurology/movement disorders at King’s College Hospital in London and a world authority on this disease.
“It is one of the most important brain chemicals we have and is essential for movement, from moving your arms when walking to blinking and making facial expressions, as well as non-movement, such as the sense of smell, pain and anxiety . .’
Kirstie was given a low dose of rasagiline, a drug that slows the breakdown of dopamine, which controlled her symptoms for the next five years. But when she was around 30, she came back, worse than she was before, and was offered a patch containing rotigotine, which mimics the effects of dopamine.
“Rotigotine patches may be helpful,” says Professor Chaudhuri.
‘You can’t put dopamine directly into the brain, so oral medications work by crossing the blood and stomach barriers. A skin patch does not pass through the stomach, but it is an inexact science and the quantities can become erratic and in some patients (around 9 percent in the patch) it can produce unprovoked reactions, such as behavioral problems,’ he explains.
«Dopamine is linked to a derivative of cocaine and activates the reward centers of the brain and, therefore, can produce addictive behaviors in search of reward. Recent research in Germany showed that some patients taking these medications binge in the middle of the night, especially on chocolate, because it contains dopamine.’
Over the next few years, as the dose of medication was increased to control her worsening symptoms, Kirstie’s behavior became unrecognizable.
“It was like I was on 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,” Kirstie says.
‘I became obsessed with things, like buying things in charity shops. She would come home with strange things that she would never wear or the exact same pair of shoes that she already had. I got up early to clean or organize the closets.
He adds: “Jason and I were arguing a lot. I remember getting angry one time 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 didn’t realize 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 that she had met someone else.
“I can’t believe he 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,” Kirstie says.
“I was in love, so I told Jason I was going to live with him. He was a real estate developer who 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 children.
Jason nods. “I did everything I could to make her see reason, I even invited this man to our house to try to fix everything, but she was so obsessed with him that I realized she would never make it.
“It never occurred to me at the time that it could be the medications causing this,” he says.
Over the past decade, neurologists have become more aware of this strange side effect, known as impulse control disorder. “It covers 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 Parkinson’s medications carry that risk. We are now very aware of this and patients are closely monitored. It is often younger patients who are susceptible. In fact, the use of these drugs is decreasing globally due to these behavioral problems.”
After Kirstie’s suicide attempt in November 2018, she returned to the family home and her counselor gradually reduced her dose of rotigotine, from 16mg to the 2mg she takes now. “Once they reduced my medication, I started to feel more like myself,” she says.
‘But I was mortified by what he had done to my family. I’m very lucky that Jason was so patient and we are much stronger as a couple now. But he would never wish it on my worst enemy.
However, their story is not unique: the couple run a Parkinson’s disease support group, Spelthorne Parkies, with weekly events and an annual retreat. “We’ve met other couples who are going through the same thing, but they often don’t have the same honest relationship that we do, so they can’t tell their other halves that they’re in love with someone else,” Kirstie says. .
‘I am convinced that this side effect will have broken marriages. But it’s something that no one mentions. Jason and I want to talk openly about this to help others. Because it almost destroyed us too.
Doctor TikTok: Experts assess viral health trends
This week: a digital detox for mental health
What social networks say: It may seem ironic, but #digitaldetox had almost 90 million views at last count. A digital detox (i.e. unplugging without screens or the internet) is touted as beneficial for mental health.
The expert’s verdict: “Excessive screen time and social media use have been linked to depression, anxiety, and feelings of loneliness,” says psychotherapist Kamalyn Kaur. “Disconnecting from this can provide a much-needed respite.”
Georgina Sturmer, a counselor accredited by the British Association for Counseling and Psychotherapy, adds: ‘Deep down, most of us know if our screen use is invading our daily lives. But if we need a more concrete measure, we can use trackers or apps to see how much time we are spending in front of the screen.
‘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 are full of excuses; or you notice a growing level of anxiety about being disconnected. This is a sign that there is a problem.”
If you want to do a digital detox, whether for an hour, a day or a weekend, preparation is key, says Georgina Sturmer. ‘Think about what you need to do or organize to get away from your devices. Maybe you need a notebook, a pocket AZ map or a landline.’