Henri David, 75, has lived for 42 years with Parkinson’s disease. There is no known cure for the neurodegenerative illness which causes, among other symptoms, shaking, muscle rigidity and loss of balance, and can eventually lead to the development of a form of dementia. Over the years, David has tried out the whole range of dopaminergic drugs that are prescribed to Parkinson’s sufferers, to help alleviate his tremors and muscle stiffness. When his neurologist prescribed an increase in the amount of the drug he was taking, he began to dress as a woman.
Dopaminergic drugs are used to compensate for the loss of the neurons that produce the chemical messenger dopamine. A lack of dopamine causes irregular brain activity, and in turn leads to many of the debilitating symptoms of Parkinson’s disease. But all the drugs used to compensate for what would otherwise be a shortfall in dopamine can produce serious side effects.
In the case of David, his cross-dressing and associated behaviour lasted for a period of ten years, when he also embarked on costly, irrational spending. “At first, I only wore female underwear,” he said. “Then I told my wife that I was heading off to play cards and I’d drive hundreds of kilometres at night, wearing disguise. I took crazy pleasure in walking, dressed up as a woman, along motorway car parks, places of particular types of meetings.”
For Patrick (not his real name), the side effects of the drugs were of a gruesome nature and led to his imprisonment. An engineer now in in his fifties, Patrick became obsessed with maiming and killing cats, which he would go looking for, attracting them to his car with pet food. On one occasion, under the influence of a different dopaminergic drug, he killed a dog with a screwdriver.
Patrick became a cat killer after he was prescribed Requip, a brand name for the dopamine agonist ropinirole, which triggers dopamine receptors. Manufactured by British pharmaceutical giant GSK (formerly GlaxoSmithKline), Requip is prescribed to around 48,000 sufferers of Parkinson’s disease in France, where the numbers of those diagnosed with the disease is estimated by the health authorities to total 273,650 (data for 2022). Of that total (of which a small majority are men), close to around 250,000 people are prescribed with levodopa, one of the main drugs to treat the condition, which travels through a patient’s blood to the brain where it converts into dopamine. Levodopa is often prescribed alongside another dopaminergic drug.
Enlargement : Illustration 1
Sifrol is , like Requip, a dopamine agonist. It contains pramipexole and is taken by around 131,000 patients in France. The family of dopamine agonists include others that contain cabergoline, apomorphine, bromocriptine and piribedil.
“Almost all the patients with Parkinson’s disease receive a dopaminergic treatment, of which close to half in France involves the use of dopaminergic agonists, which are the most responsible for behavioural problems,” said Jean-Christophe Corvol, professor of neurology based at the Pitié-Salpêtrière hospital in Paris.
A study by Corvol and colleagues into “the longitudinal dose-effect relationship between dopamine replacement therapy and impulse control disorders in Parkinson disease”, published in 2018 in the review Neurology, involved 411 Parkinson’s patients undergoing treatment. They found that half of those who had no previous behavioural disorders developed such problems after five years of treatment with dopaminergic agonists.
In the case of Patrick, he too had no previous behavioural disorder, nor a criminal record, before he set off on a spree of maiming and killing cats. Patrick agreed to be interviewed by Mediapart on condition his real name is withheld, and said he was speaking out publicly for the first time “to help patients who don’t know the quagmire they can find themselves in with these treatments”.
It was in the latter part of the 2010s that his neurologist began increasing the amount of Requip in his prescriptions because of Patrick’s worsening symptoms. Patrick said the doctor, aware of the possible negative side effects, questioned him regularly about any eventual change in behaviour. But Patrick said nothing about the obsession he had developed to maim and kill cats, which he carried out over a 15-month period.
In most of the cruel nocturnal attacks, he would dislocate their shoulder blades and hipbones before driving away. “It was an uncontrollable impulse,” he recalled. “More than a priority, an aim. Once reached, it gave me relief.” When his neurologist doubled the original dose of Requip, the desire to hurt the animals became so strong he began carrying out the attacks during the day. That was when the owner of one of the pets he targeted noted his car’s number plate and alerted the police, who arrested him.
He confessed to the crimes, and his neurologist, learning of his arrest, immediately took him off the treatment, telling Patrick’s wife to get rid of any pills remaining in their home. A mandated psychologist called to examine Patrick in custody suspected a link between his crimes and his treatment for Parkinson’s disease, but despite his recommendation that the link should be investigated by a mandated neurologist, it never was.
In 2019, he was found guilty of cruelty to domestic animals – the public prosecutor listed 33 cases, although the exact number of cats he attacked is unclear. He paid damages of 60,000 euros to the pets’ owners and animal welfare associations, and after more cat owners subsequently registered as plaintiffs he was handed a one-year prison sentence – and after six weeks behind bars was allowed out on condition of wearing an electronic bracelet.
In 2021, his new lawyer took his case to appeal when the presiding magistrates accepted the evidence of neurological reports that Patrick had committed the crimes solely under the effect of the dopamine agonist. His conviction was immediately overturned.
But along the way, he was vilified on social media and received death threats to the point of being placed under police protection. Even after his criminal record was erased, and he moved home, he on several occasions lost new jobs he obtained when references to his past cruelty re-emerged.
As for Henri David, his treatment led to him selling his house and leaving his job, when his hyperactivity drove him into two costly projects for which he is now refunding creditors to the tune of 1,500 euros per month. In a scheme established by the Bank of France, he has already spent ten years making the payments, and will have to continue making them until 2030, when he will be 81.
It was in 2006 that he and his wife discovered what had driven his hare-brained projects, and she remains at his side after 53 years of marriage. He took legal action against his neurologist, arguing that the latter had not sufficiently warned him to the possible dangers of the dopaminergic drugs he had prescribed. In 2014, David won the case in court and was awarded close to 17,500 euros – a sum which was far from covering the massive amounts he had been spending over a period of 25 years.
The last two years that I was at his side I slept in an upright position, leaning back onto cushions so that I could react in a second.
According to France’s National Agency for the Safety of Medicines and Health Products, the ANSM, the country’s first case of behavioural disorder linked to a dopaminergic drug was recorded in 1986 in the French pharmacovigilance national database. But it was only in the 2000s that the undesirable effects of the medication became talked about. In 2009, the ANSM sent a note out to healthcare professionals alerting them to the side effect risks of levodopa and dopaminergic agonists, and underlined the necessity to inform both the patients and their close entourage of those risks.
Because the close entourage of those treated for Parkinson’s disease become collateral victims when the drugs suddenly prompt extreme behaviour. One of them is Nicole (not her real name), 63, who lives in the port city of Marseille, in southern France. In 2007, her husband, suffering from Parkinson’s, was put on a course of levodopa, like around 250,000 other people in France. “As of the day after taking the medicine, he who had become worn out, very tired, regained an incredible drive,” recounted Nicole. But that drive involved uncontrollable sexual urges. She said that for four years she suffered “rapes, because that’s what it’s called, even if it wasn’t talked about at the time – it was before #Metoo”. She said that when she spoke about the problem with her husband’s doctor, the latter replied that “marriage is for better or worse”.
Enlargement : Illustration 2
“The last two years that I was at his side I slept in an upright position, leaning back onto cushions so that I could react in a second. I used to get up at 4am for my work, so sometimes I would fall asleep after lunch. I’d wake up with my husband on top of me, dribbling and penetrating me.” The couple’s young daughter would witness her mother’s distress, and one day impressed upon her that her friends whose parents had divorced were not unhappy.
It was the trigger, said Nicole, for putting aside her guilt at the idea of leaving her husband. She moved abroad with her daughter and filed for divorce. Her husband died this year, leaving behind a mountain of debt, which her daughter, now adult, is trying to deal with on Nicole’s behalf.
“He blew money in an all-out manner,” said Nicole. “At one moment, his company had debts of 300,000 euros because he spent everything on 4x4 [vehicles] and poker. One morning we got up and he’d even sold family jewels in gold which had been offered to my daughter by her grandmothers. Fifteen years ago dopaminergic treatments were prescribed without any comment, without warning. With his medication, the patient doesn’t tremble anymore, but those next to him do.”
It was stronger than me. Like a little voice that told me to go to the casino. Moreover, I would meet other Parkinsonians there.
Women’s sexuality also can be affected by dopaminergic drugs, a fact that has been known to the medical profession for at least 20 years. Apomorphine, a dopamine agonist used to treat Parkinson's, was the object of a study published in May 2004 in the review Urology, which concluded that the molecule can have positive effects for women seeking to regain sexual desire.
Sandrine (not her real name) was diagnosed with Parkinson’s in 2018. When her neurologist increased her intake of Requip in 2022 to help with her advancing muscle stiffness, her libido bloomed. As a chemist’s assistant preparing medications in a pharmacy, she was used to reading the advisory notes. Beginning in the 2000s, the undesirable effects of dopaminergic drugs had been progressively more explicit in notices, but she did not immediately link that her suddenly increased sex drive with the increase in the doses of Requip she was taking. “I’ve been married for 30 years,” said, in her fifties. “I never desired sexual intercourse every day, and there I could think only of that. In the beginning, my husband was happy, then subsequently less keen.”
Following that, she said, “I began having urges for food, but I put that down to depression”. She would raid the fridge at night, putting on 15 kilos in weight within six months. During that same period, she also began betting on online casino websites in secret, spending 40,000 euros. She used up her savings and took out a loan. Sleeping about three hours a night, she was at her wit’s end and began having suicidal thought. “When I was driving, I wanted to speed into a tree,” she recalled. In March this year she told her neurologist everything, and she was taken off the treatment. The muscle stiffness and pain has returned since, but the urges have disappeared.
In the case of Marie-Laure Donati, 69, the debilitating effects of Parkinson’s are progressing. She lives close to the Mediterranean Sea in the Provence region of south-east France, and if she wants to continue with her simple pleasures of walking along the coast, and knitting, she has to have some control over her movements, and for the time being, only dopaminergic drugs can provide her with that.
She told Mediapart that for the ten years after she was diagnosed with Parkinson’s in 2006, those same drugs led her to spend around 1,000 euros every month on gambling. But before she began taking the dopamine agonist Sifrol (sold under the name Mirapex in the US), she had never gambled. Her nurse’s pension was significantly reduced by the betting, and despite her previous work as a nurse and the warnings from her neurologist about the side effects of the drug, she couldn’t prevent herself from the giving in to the urge. “It was stronger than me,” she recalled. “Like a little voice that told me to go to the casino. Moreover, I would meet other Parkinsonians there.”
Added to that is making compulsive purchases. “If I go alone to the shops, I come back with four pairs of shoes, the black ones, the green ones, the beige ones and the reds,” she explained. “For this season, I treated myself to seven swimming suits.” Donati used the present tense because even though her treatment is in the form of a skin patch which is supposed to limit the more extreme effects of the drugs, she is still subject to uncontrollable behaviour.
-------------------------
- The above article is based on two reports originally publish on Mediapart in French, and which can be found here and here.
English version by Graham Tearse