IN OCTOBER 2018 I found myself in St Vincent’s Private Hospital. Located in Darlinghurst in inner-city Sydney, it was undergoing renovations and the grinding of jackhammers and loud banging punctuated my stay. Nevertheless, it was a fascinating fortnight: I shared my ward with some extraordinary roommates, including two former professors, a former wharfie and militant unionist, and an Italian orchardist, potato and rice farmer. Such fellow patients made for a stimulating stay, as did my ‘day pass’ allowing me out for lunch (and even a glass of wine) at a nearby café run by two charming Italian boys whose menu was based on their Nonna’s old-time recipes.
This is the story of how I came to be there. It’s an account of nine years of chronic, excruciating pain – especially in my legs while sleeping; of not having a good night’s sleep for six years, waking in pain every hour. It’s also the story of eight doctors: of misdiagnoses, misleading and partial diagnoses. It’s the story of twelve drugs, multiple MRIs, CT scans and X-rays, two physiotherapists, three chiropractors and a shiatsu masseur.
It’s the story of trying to comprehend what was happening to me. I was an investigative reporter at the ABC for many years, following the trail of Nazi war criminals and exposing the immorality of Australian governments that betrayed East Timor and stole its oil. But an investigation of myself was even more challenging. I followed clues that evaded even skilled doctors and that confronted and unnerved me as the story came together.
THIS STORY STARTED in a small way in late 2010. Initially, it was a feeling of discomfort in my left leg, waking me from my usual deep sleep. Discomfort rapidly evolved into intense pain. Earlier that year I’d had a spinal scan that revealed mild degeneration, perhaps explaining persistent lower back pain. As the leg pain increased, I undertook physiotherapy and chiropractic treatments, also commencing an exercise regime, bushwalking and yoga.
I consulted a well-regarded rheumatologist who diagnosed a muscular-skeletal problem. One comment, observing that there was ‘a very slight subjective change in sensation over the lateral left leg between the knee and the ankle’, subsequently assumed significance. The rheumatologist prescribed several ineffective drugs – amitriptyline, Lyrica and Pristiq – that are used as antidepressants. None reduced the excruciating pain that spread from my lower to upper left leg, from my lower to mid-back and into my right leg. Then came numbness in my feet, akin to pins and needles, evolving into intense discomfort.
MRIs, CT scans and X-rays revealed that my spine and hips were well preserved for my age. But the pain increased. From late 2012 until late 2018, I didn’t have a good night’s sleep. Pain and sleeplessness left me debilitated and constantly exhausted. I took up golf again, hoping it would alleviate my condition. In my youth I was a fairly good player, but recommencing after twenty years was challenging. Eventually I found some of my old rhythm, hitting the ball straight. One day I started pulling it to the left and was unable to rectify this.
IN 2015 I wondered if my brain would explain my condition: I noticed symptoms of what I thought could be Parkinson’s disease, including shaking in my left forearm and right hand, especially when performing everyday activities such as sipping a cup of tea. Could this potentially put my brain at the centre of my pain? It was a daunting prospect.
I consulted a neurologist at St Vincent’s who didn’t diagnose Parkinson’s. However, he observed ‘some impassivity of facial expression’, which technically is called ‘hypomimia’. This involves a reduction, even absence, of facial expressiveness. He also observed ‘a positive glabellar tap’. Located between the eyebrows, when the glabellar is tapped repeatedly, normal eyes blink for a few taps, but if blinking persists it’s abnormal. Most Parkinson’s sufferers experience both symptoms.
He recommended ceasing Lyrica as it didn’t sound, he told me, as if I was suffering from ‘neuropathic pain’. I was reassured by his conclusion that my pain wasn’t connected to my brain, but I still had no diagnosis.
THE NEXT TWO years were spent with a physio, two chiros and a shiatsu masseur with no improvement. In late 2017 my GP observed that my hypomimia had worsened. I’d also become unbalanced, particularly on my left side. Where I’d previously walked easily on rugged bush tracks, up and down steep inclines, I suddenly feared falling.
Another rheumatologist undertook to diagnose my pain. His clinical tests confirmed the previous finding of a ‘reduced sensation’ in my lower limbs. He ordered comprehensive blood tests, including for syphilis; nerve-conduction studies (testing nerve responses by electrical impulses); and an EMG to assess the nerves that control muscles. He was stumped when everything proved to be normal. He prescribed a steroid (prednisolone), which also failed.
He referred me to another neurologist who noted several Parkinson’s-like symptoms, including being ‘struck by the hypomimia’; an odd ‘Parkinsonian’ gait; reduced arm swing; and a diminution of my ability to tap my hands and feet, especially on the left side. He concluded that my pain was unrelated to a neurological condition but put me on a trial of levodopa. In the mid-1970s I’d read Oliver Sacks’s gripping book Awakenings (Duckworth & Co., 1973) recounting his experiments using levodopa to stimulate consciousness in people who’d fallen into a trance-like state during the 1920s encephalitis epidemic.
This prescription unnerved me as I was aware that it was the frontline drug for treating Parkinson’s. On my follow-up visit, however, the neurologist directed I cease levodopa, concluding that it had no appreciable impact and that I’d be ‘best served by a pain clinic’. I was at another dead end.
I discussed my despair with John Raftos, a school friend and emergency specialist at St Vincent’s. He was optimistic: there must be a diagnosis and management regime for my pain, and suggested I consult Ray Garrick, whom he regarded as one of the cleverest doctors he’d known professionally. A neurologist at St Vincent’s Clinic, Ray also treats neuropathic pain. Serendipitously, they met shortly after and John made a personal request for Ray to see ‘an old friend who had a difficult neurological problem’, explaining that there was a concern I might have Parkinson’s that could account for my pain.
IN MID-2018 I attended the funeral of my ABC colleague and brilliant investigative reporter Liz Jackson, who’d developed a debilitating form of Parkinson’s, fuelling my fears about my own condition. Liz’s funeral coincided with meeting Ray Garrick. A tall, erect man with greying hair, old-fashioned manners and an obvious warmth towards his patients, Ray proved to be a fascinating mix of wisdom and wicked wit, accompanied by exceptional communication skills.
When we first met I didn’t comprehend what lay behind Ray’s humour: he was carefully watching my facial expressions during his perceptive, erudite and often hilarious commentary, testing my ability to engage with him face-to-face to assess my hypomimia. He told me he used humour ‘to judge what stage of neurological disorder’ I had and to help me understand his diagnosis.
Ray gently led me to his diagnosis: an extrapyramidal brain dysfunction, which accounted for my long nights of pain and sleeplessness. My puzzlement at what ‘extrapyramidal’ meant turned to fear as I performed the lay diagnosis using ‘Doctor Google’. But soon I had a professional explanation.
RAY GARRICK WASN'T alone in communicating with me clearly. Stephanie Barnes, a young woman with a formidable intellect, was Ray’s protégé and at that time his registrar. Her enthusiasm for neurology was infectious. ‘The brain is incredible,’ she declared. ‘There’s nothing else like it. But we understand so little of what the brain can actually do, both about how it works when it’s working properly and how it works when it’s going wrong.’
She conducted a thorough examination, directing me to tap my feet and flex my fingers as rapidly as possible. She used a cold instrument to test the sensations of my lower legs and arms and observed my gait. The most interesting test required me to tap my index and middle fingers alternately and as rapidly as possible on the back of my opposite hand. It was difficult using my right hand but impossible on the left, indicating imbalance between my left and right sides and making sense of that leftwards trajectory of my golf shots.
Stephanie was comprehensively testing my nervous system, checking how the nerves that control my eyes, face, head, arms and legs were working or not working. Specifically, she was examining certain parts of the brain that, she told me, are ‘particularly important for co-ordination, which would indicate problems with the co-ordination system of your brain’. By running a cold instrument up my legs and arms, Stephanie explained, she was ‘checking the nerves that control your feelings – touch, temperature, pain, sensations that get carried by different paths through the spinal cord to the brain. By testing them individually we can tell which nerves in particular – and which parts of the brain and spinal cord – aren’t working properly.’
Stephanie and Ray concluded that my extrapyramidal dysfunction had been caused by a small stroke in my thalamus. I was flummoxed: I’d never had symptoms of a stroke and a recent MRI of my brain had revealed nothing. Stephanie wasn’t surprised: her explanation involved the time lag between my stroke (preceding the pain’s onset in 2010) and the MRI (in 2018).
AS STEPHANIE EXPLAINED, the brain is the apex of the ‘pyramid’ of the nervous system. Extrapyramidal dysfunction involves significant problems affecting the circuits of the basal ganglia that normally produce smooth, co-ordinated and controlled movements. A collection of neurons located deep within the cerebral hemispheres of the brain, the basal ganglia work through the primary motor cortex to control individual movements. Stephanie described their function as feeding ‘information in and out of those motor areas to allow movements to be smoothly co-ordinated’. The basal ganglia are ‘important in making sure your movements are coming out in exactly the right order and that your body is able to learn how to do those same movements over and over again’. Extrapyramidal disorders include Parkinson’s and Parkinsonism (conditions with Parkinson’s-like symptoms) among various others.
The thalamus is also central to my disorder. Located just above the brain stem between the cerebral cortex and the mid-brain, with major nerve connections to both, Stephanie described it as ‘one of the main superhighways of the brain’, passing information in and out, feeding feelings from the body through the thalamus up to the brain, where they’re interpreted. Numerous cases had already established that ‘a stroke in the thalamus causes thalamic pain syndrome’, Stephanie reported, ‘which is a type of centrally mediated pain originating in the brain, affecting various parts of the body’.
Extrapyramidal dysfunction, however, isn’t a straightforward diagnosis. Symptoms include stiffness in the arms or legs, slow movements, tremors in the hands or elsewhere. ‘That’s something you might associate with Parkinson’s disease, which is the classical type of extrapyramidal disorder,’ Stephanie recounted. ‘But there are many other types with slightly different features. Some we see more frequently and have a better understanding of, others occur more rarely, and we understand them less.’ I was starting to make sense of what extrapyramidal dysfunction involved, both generally and for me specifically. It wasn’t an appealing diagnosis.
MY EXTRAPYRAMIDAL DYSFUNCTION affects me in various ways. I’ve virtually lost dexterity in my left hand, making it difficult to perform ordinary tasks such as opening and closing screw-on lids, doing up buttons, tying my shoelaces and eating: for example, consuming salad now requires a spoon as I can’t hold a fork properly. Furthermore, it’s increasingly difficult to stand from sitting and kneeling positions and my imbalance creates the very real possibility of falling while performing functions usually co-ordinated by the brain, including walking and standing.
I’ve had several serious backwards falls, one from a ladder and another on a Melbourne tram, collapsing over a schoolgirl and another passenger, badly hitting my head on the tram wall. Luckily, they assisted me to get up from my undignified position.
My brain disorder also affected me intellectually and emotionally. All my life I’ve been engaged in politics and ideas: as a student of history and literature; a broadcaster and investigative reporter; an author of books that explore historical controversies; and a long-form essayist. But as my neurological disorder advanced during the past decade, I became disconnected from this world as my mind fogged and my acuity suffered. Subjects that I’d been well informed about – including politics and history – gradually eluded me, as did words that I could previously retrieve effortlessly. These ongoing afflictions also had emotional effects, challenging the very basis of my identity. They also affected my home life. My wife – Robyn Ravlich – patiently endured my night-time restlessness in bed and my grumpiness during the day caused by tiredness. I’ve struggled with such issues and strived to remain as close to my old self as possible – not always successfully.
But as Ray stressed to me, learning to live with neurological pain depends at least in part upon accepting one’s disorder and remaining positive. ‘Knowing what’s a good result is a lot of what we do,’ he explained. ‘A good result might be that you’re no worse, but patients can also turn it around and say, “I’m no better.” A lot of communication is about reconciling patient expectations with doctor expectations.’
Ray quickly perceived the centrality of intellectual pursuits to my life and tailored his approach accordingly. ‘There were a couple of things that we had to sort out,’ he observed. ‘One was that you had a stroke-type history with an extrapyramidal process following that. Another strand was your chronic discomfort. What can we do? We can’t turn back the clock and make you pre-stroke. We can’t make you young again. Hopefully we can improve your motor function, up to a point. My main requirement was to keep you active, using your brain both intellectually and motor-wise.’
In light of their diagnosis Ray and Stephanie plotted a drug regimen. They re-prescribed levodopa for my Parkinson’s-like symptoms, which, as a result, stabilised somewhat. They then focused on managing my pain. The science of neuropathic pain medications isn’t precise. Ray and Stephanie experimented with a new series of drugs: gabapentin, baclofen and Cymbalta. Ray emphasised that studies had indicated these medications have positive effects in treating neuropathic pain. ‘But every prescription is an experiment,’ he cautioned. ‘Take these medications and see how you go.’ I didn’t go.
The final medication they prescribed was lamotrigine, a drug commonly used to treat epilepsy and bipolar disorders that is also effective for neuropathic pain. But it also proved unhelpful. I deteriorated further, developing a more intense grogginess, almost as if I’d become spatially disconnected from reality while my pain grew more excruciating.
At this point, Stephanie declared they’d reached the end of the drugs in their armoury. Over the previous decade I’d taken one new drug for each year. Given that the lamotrigine proved ineffective, Stephanie explained that the final option was a ketamine and lignocaine infusion.
Ketamine was originally utilised as a field anaesthetic for US troops during the Vietnam War, and has since become a popular recreational drug. It’s also effective in the treatment of chronic neuropathic pain. Lignocaine is a local anaesthetic that reduces neuropathic pain for many patients when used in conjunction with ketamine. Over time, Stephanie explained, ‘pain itself can evolve and the brain’s thermostat gets reset at a very high level. We use the infusion to reset it to a more normal level, so the pain remains under better control.’
And so I accepted my ‘incarceration’ in St Vincent’s.
NO ONE LIKES being in hospital, especially for prolonged periods. I arrived in trepidation, fearful of what I was about to face over the next fortnight. But the infusion was a fascinating – if painful – experience. Given that it was administered subcutaneously, the nurses inserted a needle into my stomach when I was admitted. This was attached to a machine pumping the drugs into the underlying fatty tissue via a long tube, pooling at the injection site before being slowly absorbed. The apparatus was carried in a cloth bag slung over the shoulder and I was warned to be vigilant outside the hospital, as drug addicts had been known to attack patients and steal the medication.
I reacted badly to the injections. Wherever they were inserted the site turned an angry red, swelling into hard, painful masses. Instead of remaining in one place for the usual two days, my injection site had to be changed every twelve hours. Soon my tummy resembled a well-used pin cushion.
The infusion commenced at 0.5 millilitres per hour, eventually rising to 1.9 before I was weaned off. I immediately understood why ketamine is popular with recreational drug users. I hadn’t felt like this since the 1970s when I’d smoked pot. Most importantly, my pain was immediately reduced and, as the dose ramped up, it faded significantly. While this was promising, the ultimate test came when I left hospital.
My first night’s sleep at home was the best I’d experienced in years, but then my night-time pain again became excruciating. After a few weeks, however, it receded. The infusion had worked, together with significant increases of the dose of lamotrigine to 400 milligrams a day. As Stephanie concluded, ‘The ketamine infusion may have set the scene for the lamotrigine to be effective.’
I wondered if medicinal cannabis might be a helpful addition. I knew it had been effective in reducing pain, especially for patients suffering terminal cancer. Ray referred me to a palliative care specialist. Prompted by the worldwide epidemic of opioids, Richard Chye commenced prescribing the newly licensed drug in 2017.
A gentle, engaging doctor, Richard, like Ray, connects on a personal level with his patients, treating them as people, not objects of medical scrutiny. His father died of kidney cancer in his early forties when Richard was in his final year of medicine. He observed his father’s acute pain, but ‘the doctors only focused on the cancer patient and didn’t look at him as a person’. Richard was determined to treat his patients holistically. ‘I want to treat the whole person, so I have to get it right as cancer patients only have one chance to die comfortably.’
He ‘didn’t have any experience’ when he commenced prescribing medicinal cannabis. He characterised it ‘as a drug of last resort’. In my case, ‘You’ve tried many other medications and they’ve not worked and if that’s the case then medicinal cannabis is an appropriate drug.’ But, he emphasised, ‘The evidence for medicinal cannabis is sadly lacking. I don’t know how you’ll respond to it because there’s nothing I can base my assessment on. We need to do a lot of research because we don’t understand how it works.’
It’s expensive. Richard prescribed a Canadian product costing $300 a bottle, which, on a two-millilitre daily dose, lasts for many weeks. It isn’t on the Pharmaceutical Benefits Scheme, which determines which drugs are subsidised by the federal government. ‘For governments to subsidise a drug it has to have evidence that it makes a difference to patients. And if a drug works, does it benefit the health system as a whole? It’s not about whether it helps you, but does it make the health system more efficient?’
I don’t begrudge the cost of medicinal cannabis or the government’s caution in subsidising it. Richard became convinced that it helped relieve my pain. ‘When you first came to see me in February 2019 you scored your pain at ten out of ten,’ he said, ‘but when I saw you in late September you scored it at six out of ten. To me that shows that something has made a difference.’
Pain is a very subjective experience, so it’s hard to assess the effectiveness of medicinal cannabis. But it’s greatly improved my sleep. The main cause of my waking every hour was pain. Since commencing medicinal cannabis I’ve often slept for four hours straight – sometimes more – and when pain wakes me the cannabis often helps me to get back to sleep. Richard said that it’s a common side effect of medicinal cannabis. ‘I see a lot of improvement for sleep in lots of patients.’
SO, WHAT’S MY long-term prognosis? I’ll experience pain until I die, sometimes severely, sometimes not so bad. In the first half of 2019 it improved considerably. My left leg was practically pain free and the numbness in my left foot almost completely disappeared; my right leg improved significantly, although it was still painful during the night. In the second half of 2019, however, the pain progressively worsened as the effects of the ketamine infusion wore off. At first it wasn’t as bad as before the infusion, but it wasn’t as good as shortly after it. By the last quarter of 2019 it became almost as painful as prior to the infusion, but not nightly as previously was the case. This was a considerable improvement, but it remained bothersome. At the end of 2019 I informed Richard that my pain level had increased from six out of ten to eight.
The neurological specialists who have treated me – Ray and Stephanie – have emphasised that my type of neuropathic pain cannot be cured, only managed, and the attitude of the patient is crucial in terms of achieving the best possible outcome. As well as the right combination of drugs, Stephanie stressed the importance of ‘psychological, emotional and social factors’: supportive family and friends, having activities to act as distractions, maintaining good physical fitness, eating well. ‘The most important part is remembering that this is a holistic approach and it’s a process that never ends,’ she said. ‘It’s something that will continue, but that doesn’t mean that you can’t get to a point where you can get on with life.’
I said that I was optimistic and determined to enjoy every day as much as possible: life is too short to waste on negative energy. Stephanie replied: ‘That’s one of the strongest points you have in your arsenal. We can only offer so much and your approach is critical in terms of being able to live with the pain.’
My journey to this revelation has zigzagged over the past decade. A neurological dysfunction isn’t something I welcomed, but it’s a relief to finally have a diagnosis. It’s been a fascinating journey into my brain and, as I’ve improved physically, many intellectual and emotional characteristics previously central to my existence have also returned somewhat.
It’s certain that I’ll be taking neuropathic pain medication and probably medicinal cannabis for the rest of my life. In October 2019, however, Ray declared that I was no worse than when he’d first seen me eighteen months earlier and, in some respects, I’d improved. Ray’s diagnosis is professional and objective while my experience is subjective. Ray’s earlier comment concerning the need to reconcile his expectations with mine rings in my ears. It’s one thing to accept his diagnosis that my condition is stable, but another to reconcile myself to permanent pain. In early 2020 another ketamine infusion became necessary and I found myself in hospital again. Despite my reluctance to spend another spell in hospital, infusions will probably be a regular feature of my life. It’s a small price to pay if it makes life manageable for long periods.
In this tricky area of medical science, my disorder is about more than pain. While Ray, Stephanie and Richard have balanced their expectations with mine, reconciling me to living with, and managing, neuropathic pain, other aspects of my condition are more difficult to accept. My worsening balance, for example, affects many aspects of my daily life: getting up stairs is a major problem as I’m constantly fearful of falling backwards, and my propensity to stagger when walking sometimes makes me appear to be drunk. And despite my improved sleep, my everyday experience of tiredness continues with micro-sleeps through the day. Dealing with these aspects of my life is actually harder to accept than pain. But as my brain function degenerates – as it inevitably will – they, too, will permanently require management for the rest of my days.