Ray still dreams of dancing. In his twenties he was a ballroom dancing champion. That’s how he met his wife, Rosa. They were paired up at the local dance hall as shy teenagers and learned all the moves together. It wasn’t long before their partnership became more than just a dancing one, and as their love bloomed they were thrilled to win local and then national competitions. Ray can still remember the feel of it – the gliding, twirling, lifting, twisting. He didn’t have to think about moving; his feet and legs just did it. The dance instructor called it ‘flow’. The competition judge also used that word when they won their biggest trophy, saying they were ‘a pair in perfect flow’.
That flow had long gone from Ray’s body, replaced with other f-words: freezing, festination, falls. He could think of one more f-word to describe his life, and frequently used it when trying to move. Just the short walk from his bed to the toilet was a struggle. ‘Fuck! Why won’t my bloody legs work?’ he’d cry out in frustration. Rosa would sigh, rush to his side, put her arm around him and ask if he felt like a cup of tea. He remembered when he’d first heard the neurologist say the words ‘Parkinson’s disease’ and how he hadn’t heard anything more after that. He remembered Rosa’s tears dripping off her chin, and that he’d held onto her hand a bit tighter than he usually did.
The idea of brain surgery scared him. ‘Deep brain stimulation’ sounded like something from a science fiction movie, but the thought of never feeling ‘flow’ again scared him more so he was willing to try it. The idea of someone snooping around deep within his brain was weird. But the motor symptoms of his Parkinson’s disease were severe, and he had not had much relief from the cocktail of medications he had tried, so his neurologist had told him it was worth a try. ‘Who knows,’ he asked himself, ‘maybe Rosa and I will actually get to dance together again?’
On the day of the treatment he kissed Rosa goodbye and told her he looked forward to dancing with her soon. She wiped a tear away as he shuffled through the automatic doors.
And dance he did. The treatment seemed miraculous. It was as though he had a new body. His shuffling gait – the much-feared festination – was replaced by smooth strides. He couldn’t stop smiling. He didn’t walk; he preferred to dance. Rosa indulged his constant grabbing of her waist and insistence on waltzing around with her. She was happy that he was happy.
But this miraculous treatment had a hidden side effect that they were both struggling with. Not only was Ray insisting that Rosa dance with him all the time, he was also insisting on sex. Multiple times a day. It was fun at first, but after a month Rosa started to get worried and wondered if it would ever settle down. She was exhausted. When she said no a few times in a row, she caught him in the garage masturbating over an old porn magazine. She suspected that if she didn’t oblige with sex, he might seek it elsewhere. She was right. When she saw a series of unusual transactions in their bank account, she became suspicious and rang the bank, then traced down the name on the bank statement to a local brothel. She stopped making him cups of tea after that.
One night she heard Ray come to bed and kept reading her book. He lay with his face down in his pillow, and she felt the bed wobble. ‘I’m so sorry,’ he said between sobs. ‘I can’t help it. There’s something wrong with me. We have to tell the doctor. I’m scared they won’t let me have the treatment anymore, but I can’t go on like this.’ She put her book down and nodded, and then buried her head in her own pillow to soak up her tears.
Hypersexuality is the most common of the impulse control disorders (ICDs) that can occur in Parkinson’s disease, either in response to dopamine medications or after deep brain stimulation treatment. It has been reported that around 3 per cent of people with Parkinson’s who are taking dopamine replacement therapy will experience hypersexuality at some point; it is more common in men, and in those taking higher doses of dopamine agonists – that is, drugs that mimic dopamine. Other common ICDs are pathological gambling and compulsive shopping; some studies report that up to 40 per cent of people with Parkinson’s disease are affected by ICDs of some kind.
The catch with deep brain stimulation as a treatment is that while it is highly effective at treating motor symptoms, and can also be prescribed to treat ICDs, in some cases it actually makes them worse – or triggers new ICDs. According to studies of this phenomenon, ICDs are more common in males who have a younger onset of Parkinson’s disease and have a previous psychiatric history or family history of addiction. Why some people with Parkinson’s develop new ICDs after surgery is not known, but all the ICDs are a result of tampering with the structures known to be part of the reward-processing system in the brain. In the case of hypersexuality, it is thought to reflect the direct stimulation of the structures within the sexual neural network.
Deep brain stimulation involves the insertion of electrodes within certain brain areas to produce electrical impulses. The electrodes are controlled by a device like a pacemaker that sits under the skin of the chest and is attached to the electrodes by a wire. Deep brain stimulation for Parkinson’s disease typically targets the subthalamic nucleus, which is part of the basal ganglia, a complex structure deep within the brain. The subthalamic nucleus forms part of the frontostriato-thalamic-cortical loops, which mediate motor, cognitive and emotional functions, so it is not surprising that stimulating it can result in behavioural changes. Deep brain stimulation can also cause increased sensitisation of the brain to dopamine therapy, which is usually still required after the stimulation, although typically at a lower dose than that needed pre-surgery.
It is often partners who report ICDs rather than the patients themselves; the impact of these behaviours can be highly distressing for family members. Managing ICDs in people with Parkinson’s disease is a juggling act. It involves weighing up the severity of their motor symptoms, how they respond to medications and the impact of the ICD on their lives. For those with Parkinson’s disease contemplating deep brain stimulation, the old phrase ‘knowledge is power’ is applicable. Being informed about the possibility of hypersexuality and other ICDs can reduce the shock if these side effects occur.
APART FROM SUCKING OUT AND STIMULATING BITS OF brain, neurosurgeons also need to put things into brains. One example is called a shunt, which is used to treat hydrocephalus – literally, water (hydro) on the brain (cephalus). Our brains are bathed in a liquid called cerebrospinal fluid; the brain stays moist thanks to a finely balanced system of production, absorption and flow of this fluid. Special chambers within our brains, the ventricles, are like pools. Typically the cerebrospinal fluid fills and flushes through these ventricles in a constant tide-like flow, but sometimes the flow is disrupted due to a blockage, resulting in hydrocephalus. The cerebrospinal fluid build-up can cause the ventricles to enlarge and put pressure on the brain, resulting in symptoms such as visual disturbance, walking difficulties and incontinence. Treatment may be required and involves a neurosurgeon inserting a small tube – a shunt – that helps re-establish the flow of cerebrospinal fluid.
A change in sex drive is not something you would expect as a result of having a shunt inserted by a neurosurgeon, but this is exactly what happened to two elderly gentlemen, Albert and Arnold. They were both in their seventies. Albert had never been married and it was noted that he had ‘courted very little’ and ‘never used coarse or suggestive language’. After he collapsed in the nursing home where he lived and was found to have hydrocephalus, he had a shunt inserted – and suddenly developed a sexual appetite. He approached and fondled female patients, crawled into their beds with sexual intent and used sexually explicit language. Albert had to be restrained continuously to prevent his constant sexual demands.
Arnold was married and, according to the case report, he and his wife had ‘weekly sexual relations’. He developed herpes encephalitis and after waking from a coma, he began making sexual comments to women in the hospital, fondled the nurses and masturbated in public. Given that we know herpes encephalitis affects the temporal lobes (see Chapter 1), it is likely that his initial manifestation of hypersexuality was due to temporal lobe damage. After treatment of the acute phase of his encephalitis he developed ventricular enlargement and needed a shunt to be inserted. Following this procedure, his sexual disinhibition was exacerbated; his wife said he was ‘disgusting’ and became ‘the man with a thousand hands’. He tried to fondle her every time she was within reach, demanded sex multiple times a day, and asked if she could have sex with other men while he watched, an interest he’d never expressed before in their decades of marriage. This excessive sexual interest had been present for two years at the time he was seen by the doctors who wrote up his case study. No doubt it was an exhausting time for his wife.
The common thing in both Alfred’s and Arnold’s cases was that the tip of their shunts ended up in the septum. This is a subcortical structure comprised of two parts: the septum pellucidum and septum verum. The septum pellucidum, a thin and almost transparent membrane that runs down the middle of the brain, is surrounded by a collection of nuclei (the septal nuclei), which are extensively connected with other parts of the sexual neural network, including the amygdala, hypothalamus and the ventral tegmental area (which, along with the substantia nigra, is an area of the brain that releases dopamine). Once again, we see that these brain structures are all part of a widespread interconnected network; a shunt tip disturbing the septal region or any other part of the sexual neural network could lead to unusual sexual side effects.
THIS WAS NOT THE FIRST TIME THAT TINKERING WITH the septal region had been found to result in sexual disturbances. Other observations had already proved that this brain region was part of the sexual neural network. In the 1950s and ’60s the controversial American psychiatrist RG Heath electrically and chemically stimulated different brain regions in 54 patients with various conditions, including schizophrenia and narcolepsy (a disorder characterised by excessive daytime sleepiness, sudden ‘sleep attacks’, and in some cases a loss of muscle control called cataplexy). All of Heath’s subjects showed what he called a ‘pleasurable response’, with varying degrees of sexual arousal, when their septal region was stimulated. Heath developed a self-stimulating device that was attached to intracranial electrodes – that is, electrodes that were placed within the brain, usually to find the origin of seizures in people with epilepsy. This enabled patients to press a button to self-stimulate parts of their own brains. When the electrodes were in the septal region, patients could give themselves an immediate orgasm. Not surprisingly, some patients pressed this button repeatedly, finding the instant pleasure impossible to resist.
The term ‘psychosurgery’ brings to mind tragic cases of frontal lobotomy, such as that portrayed in the Oscar-winning film One Flew Over the Cuckoo’s Nest (1975) and the 1962 novel it was based on. Jack Nicholson’s character, Randle Patrick ‘Mac’ McMurphy, has faked mental illness to be placed in a psychiatric hospital rather than jail, but ends up being forced to have a frontal lobotomy, or leucotomy, a procedure that severs the connections between the frontal lobes and the rest of the brain. The result is that McMurphy is distressingly reduced to a vegetative state, no longer the charismatic criminal who fearlessly stands up to authority.
In the early 1970s, Heath used his program of septal stimulation in a bizarre and shocking way: in an attempt to ‘initiate heterosexual arousal and behaviour in a homosexual male’. This mirrored the disturbing psychosurgical techniques used in Germany to ‘treat’ homosexual men in the 1960s and ’70s. Men who were considered to have ‘deviant’ sexual behaviours were subjected to a brain surgery technique called stereotaxic hypothalotomy, which involved the surgical destruction of a part of the hypothalamus called the ventromedial nucleus. The idea was based on earlier experimental animal research on cats whose amygdalae had been removed and had exhibited hypersexuality; removing their hypothalamus had been found to reverse the hypersexuality. The surgeons who conducted hypothalotomies on humans considered the hypothalamus to be the ‘sex behaviour centre’, and they reported that its destruction led to abolished or weakened sex drive.
The hypothalamus is a cone-shaped structure deep within the brain which is involved in the control of crucial body functions including the autonomic nervous system and endocrine functions (see Chapter 1). Most of the 70 or so men (and one woman, according to some reports) who had stereotaxic hypothalotomy surgery were homosexual and were in prison or another institution. Some had engaged in paedophilic behaviour; others had not. In the 1960s and ‘70s, homosexuality was still widely considered to be something that needed ‘treatment’. It was even listed as a disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the psychiatry bible first published in 1952, until 1973, and remarkably wasn’t removed from the World Health Organization’s International Classification of Diseases (ICD) until the tenth version published in 1992. It is clear that homosexuality was considered ‘abnormal’ by the surgeons who performed hypothalotomies.
This ‘sexual psychosurgery’ was highly controversial. A guest editorial in the journal Archives of Sexual Behavior in 1979 argued that the surgery’s theoretical basis was highly questionable as it demonstrated an ‘inadmissible transference of animal-experimental findings to human beings’, and ignored psychological and sociological knowledge about human sexual behaviour. The scientific standard of the reports about the surgery were heavily criticised. The post-operative examinations done by the surgeons themselves appeared ‘unsystematic, coincidental and random’. Reports on the outcomes of hypothalotomy were scant and biased in that they only addressed positive outcomes and mixed quantitative changes in sex drive with qualitative changes in sexual orientation. There is no information about the types or extent of psychological changes. However, the unwanted or negative effects of the surgery, rarely mentioned, included a total loss of sex drive, dizzy spells, ravenous hunger, weight gain and increased verbal aggression. One case refers to a person’s loss of ability to remember dreams. Numerous ethical concerns were raised. While the surgeons claimed that their patients were suffering and were operated on ‘at their own initiative’, the authors of the journal editorial, Inge Rieber and Volkmar Sigusch, maintained that the patients could not voluntarily decide on the surgery, as most were prisoners sentenced to punishment and they ‘hoped that, through the surgery, they could gain their freedom’. Rieber and Sigusch argued that ‘this kind of surgery under these conditions is virtually an act of coercion’, and released a public statement calling for it to be ceased immediately. Public outcry eventually led to the end of this type of psychosurgery.
The German patients who were given hypothalotomies 50 years ago are the only people known to have undergone neurosurgery for the sole reason of specifically targeting their sexual behaviour. Thankfully, in many countries, the destructive notion of homosexuality as a ‘disease’ requiring ‘treatment’ has been abandoned, but it is frightening that homosexuality remains illegal in around 70 countries, and even more horrifying that it is punishable by death in at least ten countries. The mistaken and deeply damaging belief that homosexuality is something that needs to be ‘cured’ still exists, and can be seen in the various types of ‘conversion therapy’ that are practised all around the world. These alarming therapies range from ‘spiritual’ interventions to physical measures such as electric shock therapy.
Shock therapy to intervene in sexual orientation has been portrayed in Masters of Sex, the TV series based on the work of researchers William Masters and Virginia Johnson in the 1950s and ‘60s (see Chapter 5), and there are reports of people still being subjected to this today. The film Boy Erased (2018), based on a memoir by Garrard Conley, recounts Conley’s traumatic experience of attending a gay conversion therapy program. Conversion therapies have been banned in many countries but remain a disturbingly widespread practice, and one that has led many to suicide. They have been labelled ‘torture’ by the United Nations, and there are calls for such programs to be outlawed worldwide. Let’s hope the future is more promising than that portrayed in the TV series The Handmaid’s Tale, in which a lesbian character is charged with ‘gender treachery’ and sentenced to ‘redemption’. She watches her lover being hanged and suffers the ‘punishment’ of genital mutilation.
FOR PEOPLE WITH NEUROLOGICAL CONDITIONS SUCH as Parkinson’s disease, like Ray, or temporal lobe epilepsy like Sharon and Peter (see Chapter 3), neurosurgery may be the final attempt to remove or control symptoms of their brain disorder. For others like Albert and Arnold, with a life-threatening condition such as hydrocephalus, neurosurgery is required for their survival. Dramatic sexual side effects like those I’ve described are usually rare and unexpected. Whether they are considered unwanted or desirable effects will no doubt depend on the nature of the sexual change and, if the person has a partner, how the partner feels about the change. Brain surgery is a life-changing experience for the person undergoing it, but it also impacts their partners too.
When one person in a couple is about to undergo brain surgery, sex is probably not high on that couple’s list of priorities. After the initial recovery phase, though, they might wonder when it’s safe to ‘get back in the sack’. This question was posed in a recent letter to the journal Neurosurgery by two UK-based specialists. The authors stated that although many neurosurgical patients are ‘young, fit, and lead active sexual lifestyles’, there is a lack of evidence that addresses the issue of when or if sex is safe after neurosurgery. They refer to the ‘problem of pressures’, particularly the rise in intracranial pressure – or pressure inside the skull, due to increase in volume of brain tissue, cerebrospinal fluid or blood – that occurs during sex and orgasm. Higher intracranial pressure reduces cerebral perfusion, or oxygen supply to the brain, which increases the risk of stroke or seizure in a post-operative brain that is sensitive to oxygen levels. Yet there can also be pain-relief benefits from the endorphin response triggered by orgasm. The authors concluded that neurosurgical teams need to be prepared to discuss sex with their patients ‘without any stigma attached’, that a patient’s fear of sex after neurosurgery should not be dismissed, and that patients should be encouraged to resume their sex lives ‘when the patient is up to it, with [a] common sense approach’.
The cases I’ve described demonstrate how neurosurgical stimulation of certain parts of the sexual neural network can alter our most intimate sexual thoughts and behaviours. But can it work in reverse? Can sex alter our brains? Yes, it can – and in very dramatic ways. The next chapter will explain.