Just One More Question Read online

  Niall Tubridy

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  JUST ONE MORE QUESTION

  Stories from a Life in Neurology

  CONTENTS

  1. Early Lessons

  2. Amnesia by the Seaside

  3. The Stud

  4. Santa Visits Barons Court

  5. First Impressions

  6. The Big Picture

  7. Locating the Damage

  8. Sliding Doors

  9. All in the Mind?

  10. Signing Up for Medicine at Seventeen

  11. The Many Faces of Multiple Sclerosis

  12. Living with a Label

  13. A Pain in the Head

  14. Coppers on a Wednesday Night

  15. Like Father, Like Son

  16. Heal Thyself

  17. The Choker

  18. Kevin and Aristotle

  19. The Aftermath

  20. More than Just a Hiccup

  21. Burnout

  22. Off-Balance

  23. A Hidden Side of Cancer

  24. Anthony’s Story

  25. A Day in the Life

  26. Passing the Baton

  27. The Price of Saying ‘Yes’ to the Dress

  28. Dr Google

  29. Himself

  30. A Shaking Palsy

  31. Tales of the Unexpected

  32. Doctoring in the Twenty-first Century

  33. ‘Am I Losing It?’

  34. ‘Where Do All the Old People Go?’

  Conclusion

  Acknowledgements

  About the Author

  Niall Tubridy was awarded his medical degree from the Royal College of Surgeons in Ireland in 1991. He went on to work in hospitals in Dublin, London, Paris and Melbourne. Since 2004, he has been a consultant neurologist at St Vincent’s University Hospital, Dublin. He is also a professor of clinical medicine at University College Dublin.

  To

  The Wednesday Barrel Club

  When you’re reading this account of my life in neurology, you should be aware that while everything told here is true, the raw material has been reconfigured. My experiences of dealings with patients and colleagues have been broken down and reconstructed. Cases are merged, so many of those outlined are composites of different stories, and I have been careful to either omit or change identifying details about patients. If you have been a patient of mine and think you recognize yourself, it is not possible that you could be the patient described in the pages that follow; please be assured that any similarity is coincidental.

  ‘The chief function of the body is to carry the brain around.’

  Thomas A. Edison

  1

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  EARLY LESSONS

  You never forget the first time you tell someone their life is going to change for ever. I was twenty-eight and my patient was just three years younger. While out jogging Jenny had lost the power in her left leg and had gone to see her GP. He sent her to Casualty locally and they sent her immediately to the neurology department at the large London hospital where I was then training. My boss, the consultant neurologist, had been called away, so I had to see her on my own. A nurse helped her into the examining room. By now both of her legs were so weak that even with support she walked very unsteadily.

  I was as nervous as Jenny was fearful. I took her medical history and she mentioned that an uncle had multiple sclerosis. This was a red flag because given her symptoms and profile – young, white and female – MS was a very strong possibility. She casually mentioned that she had experienced an episode, a few years before, of blurred vision for a few weeks but had ignored it at the time. I did some routine neurological tests. She had very brisk knee reflexes – a bad sign. When I stroked the soles of her feet her big toes sprang upwards – also a bad sign. In adults the big toe should bend downwards when the sole of the foot is stroked but when the nervous system is damaged it returns to its ‘baby state’ and goes up instead. So when Jenny’s big toes jumped upwards I knew that she had suffered serious nerve damage.

  A few weeks later, I had the results of her MRI scan and her brain showed all the markers we expect to see in someone with MS. Though I was confirming to Jenny what we had both strongly suspected, this was still a shattering moment.

  ‘My uncle has been in a wheelchair for as long as I can remember,’ she said when I told her. She began to cry.

  I said that not all people with MS become wheelchair-dependent. She asked if I could guarantee that she would not and I had to say no.

  This was in pre-Google days so patients’ knowledge about neurological conditions tended to be anecdotal. That meant, inevitably, that high-visibility worst cases were the ones people knew about. Jenny, naturally, thought of her uncle. She was unaware of all of those with MS who got on with quite normal lives and were not debilitated. It wasn’t for Jenny to know that she had a good chance of a better life than her uncle and, hopeful as I was, I couldn’t make any promises. All I could hope to do was help her understand her condition, explain the, at that stage rather limited, treatment options available and encourage her as much as possible.

  I took a particular interest in Jenny’s situation because it was a personal milestone for me – doctors are morbidly excited by their first major diagnosis, and I was no different. Grim though it sounds, young medics’ passion for their discipline is what drives their initial efforts to help their patients. Like all jobs, you’re pleased to be putting your hard years of study into practice in the real world. You want to tell your friends about your big diagnosis and track the impact of your attempts to help people. Now I felt like a neurologist.

  It had taken me a few years to figure out what kind of doctor I wanted to be. Dissecting a brain in the anatomy lab was, well, gruesome. So I knew that surgery was not for me pretty much straight away. I liked cardiology as well, and I was also giving some thought to being a geriatrician. Then in fourth year we were assigned to the hospital wards. This was daunting. Like generations of students before and since, we wandered forlornly around the wards trying to keep out of everyone’s way. During ward rounds we would hang around in the background while the real doctors spoke to and examined patients. We loved those teachers who gave us the time to explain things, and those who were the most demanding would always turn out to be the most enthusiastic, and certainly the ones we remembered.

  One of my earliest rotations was with the neurology team. Leading the team were two well-known consultants. They seemed to stand head and shoulders above the other physicians – at least in my young eyes. Their clinical acumen was terrific and, with an almost insouciant arrogance, they would appear to take only a few minutes to diagnose a patient. They could always make a complicated diagnosis look easy. There was a significant amount of ego involved, for sure, but underneath the bravado there was great clarity in what they were doing and how they went about it.

  So I loved neurology from the start. I loved the logical nature of the history taking and examination. I was amazed by the finely tuned way that neurologists listened to every cadence of a patient’s voice; how they watched, all but forensically, every flicker of movement. They were like expert electricians who could find the precise area where the wiring or the bulbs were faulty. And I loved the discussions they would have about unusual cases and how they would argue over one clinical sign after another. Watching from the back of the group of nurses and junior doctors was exhilarating.

  Beyond that, I was humbled to learn so much from the patients who were frequently getting a life-changing diagnosis – how they responded emotionally to what life had thrown at them, and how their loved ones watched on in their moments of agony and ecstasy. I thought that nothing could top looking after people whose brains were sick. I saw it as a wonderful
way to get to know patients as individuals at what I felt was a deeper level.

  Given the appeal of neurology at an existential level, it’s curious that I never had any interest in taking up my father’s speciality, psychiatry, even though it is undeniable that the two subjects are linked (and now more than ever). I guess I wanted to plough my own furrow. I argued sometimes with my dad about how little, apparently, psychiatrists could do for their patients. Yet that was, and is, a criticism habitually levelled at neurologists.

  In those days, and perhaps even still, neurology was seen as a somewhat odd choice. Neurologists have long been considered the intellectual end of medicine – dickie-bow-wearing nerds who seek the esoteric in the simple – but just because you study the brain does not mean you are ‘brainy’. I think the reputation of neurologists stems from our student days. With so few drug therapies available when I was training in the early 1990s, it seemed it was all about making a diagnosis and not being able to do very much to actually help people. No wonder it attracted so few of my friends who, understandably, saw this as the point of becoming a doctor.

  Jenny was admitted to the hospital so we could assess the best treatment options for her and I would call in to see her twice a day. Along with the tears there was laughter too – there’s often laughter in the hospital, and it helps to sustain both doctor and patient through the darker moments of treatment.

  Jenny did not appear to have many visitors, which was strange for a young woman from a big family. I asked her about this and she went quiet. She was embarrassed, she told me. She had asked her family not to visit, and told them that the hospital was prohibiting visitors in the first week of her illness. She didn’t want them to see her as she was; she knew that they’d look at her and think straight away of the uncle whose life had been changed by the same condition.

  Eventually, she told me tearfully that she was getting married in six months’ time. ‘That’s great news,’ I said. ‘Congratulations!’ But it was obvious to us both that her life had changed irrevocably.

  I offered to tell her fiancé when he came up to visit. I could see her panic rising as her face flushed with anger. She practically shouted at me, ‘Don’t you dare!’

  ‘But you have to tell him!’ I blurted out in surprise. ‘You can’t marry someone without telling them the truth?’

  How naïve I was.

  ‘He’ll never marry me if he thinks I could end up in a wheelchair! Would you marry someone in this position?’

  Nearly twenty-five years later I can still see her tear-flecked face and the fury in her eyes. I was young, but not that young. I was in a relationship myself and immediately wondered how I would feel if my girlfriend hid something like that from me. I was almost as furious as Jenny at the thought. This was deceit of the cruellest kind, I felt at the time. But I was young and healthy; here was this young woman at the edge, with the prospect of a lifetime of disability ahead of her, and just to top it off, this heartless doctor was going to reveal her secret to her fiancé. No wonder she was raging, not just with me, but with the world.

  I duly promised not to say anything, but I walked away seething. I am still not entirely clear what I was angry at. The lie, or a shaken trust in relationships? How would I actually feel if this were my bride-to-be? And then, how would I feel if it were me unable to move my legs, having just been told I had MS? What would I do?

  ‘Love is not love which alters when it alteration finds,’ quoted the senior nurse when I stormed into the office, mouthing off about Jenny’s imminent betrayal.

  I was taken aback by her response. She had been a neurology nurse for more years than I had been alive, and had seen the full gamut of emotions that comes with the speciality. She was calm and reassuring with even the most hysterical patient or relative (or junior doctor), and I had a lot to learn from her.

  ‘It is not your job as a doctor to judge people. Whatever the rights or wrongs of her decision, they are her rights and wrongs to make, and not ours.’

  ‘But is it not unfair of her not to tell her fiancé? Is it not my responsibility to explain it to him too?’

  ‘It may seem unfair, but that’s nothing to do with us,’ she said firmly.

  She was dead right, of course: it is not a doctor’s responsibility – nor is it even permissible – to share a patient’s medical information with anyone else without their say-so. At times this causes consternation, for example when a concerned parent or a spouse calls to discuss things without the patient’s knowledge, but it is one of the golden rules of medicine that protects the privacy and confidentiality of the doctor–patient relationship.

  It was an early lesson: I had to learn to detach myself from the patient’s life and emotional involvement in their care if I was ever going to be able to handle my job of making them better and supporting them in the longer term – which was plenty to be getting on with. I didn’t want to become cold and uncaring, but there was a line I would have to learn to tread in the years to come. Most of the time, I would hope to get the balance right, and would just go on to the next problem. But when the sleepless nights start racking up as you ruminate in the small hours about what might become of a patient and their future you realize that you are in danger of crossing the line again.

  When I did the ward round with the consultant the next day, I could barely hold Jenny’s gaze. I asked the consultant what he thought about her attitude.

  ‘Don’t be ridiculous,’ he said. ‘That’s none of our business, and the sooner you realize that, the better.’ Then he softened and said that he had ‘been there and done that’ as a younger doctor, and had come to understand that this was not the right approach to thinking about the patients.

  It took a few weeks for me to understand Jenny’s decision not to tell her fiancé. I met the young man only once and said hello, but he never asked me any questions and generously thanked me for helping to make Jenny better. They did get married later that year and I met them in the outpatient clinic a year after that. She was doing well, and had suffered no further attacks of MS. I moved away from the hospital, as is the way with the wandering young doctors, and never found out what the future held for this young couple, or whether her MS had ever returned. I am forever grateful for what they taught me and, as a result, how I taught the lesson to generations of young doctors since. It is extraordinary how influential a single patient can be without their ever realizing it. Likewise that wise and patient nurse – I still cherish the moment that we sat down together for a cup of coffee so she could talk some sense into me.

  2

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  AMNESIA BY THE SEASIDE

  ‘I had breakfast, drove to Dun Laoghaire and went for a walk. I remember nothing of the next six hours.’

  ‘Every time I have an orgasm my head explodes.’

  ‘Last night I saw Santa Claus. He was in a helicopter over my head in the bedroom.’

  When I heard stories like these I knew why I would love being a neurologist. To meet people who had just gone from the land of the neurologically well to the neurologically unwell is an endless source of fascination. Ordinary people living their ordinary lives like you and I are suddenly faced with the fragility of their own minds.

  I regularly hear the younger doctors make their first diagnosis of an unusual neurological syndrome and, while I love their excitement – and recall my own when at their stage – I have to remind them and myself that rare things are just that: rare. It is unfortunately the way of the world in medicine that what is rare is interesting and nowhere does this apply more than in neurology.

  Nathan was a Canadian chef, living in Dublin with his wife of twenty-five years, Janet. They had been settled in Ireland for many years and ran a small restaurant together. It was a good life and he had few cares in the world. He was a creature of habit. His daily routine was to have breakfast with Janet, then a quick shower before setting off for a walk. He would drive to the car park at St Michael’s Hospital in Dun Laoghaire, leave the car there and
walk the mile or so to the East Pier of Dun Laoghaire Harbour and then walk the pier. On his daily constitutional Nathan liked to reflect on the events of the previous day and plan the menus for the evening ahead.

  On this cold February morning, Nathan followed his usual routine and nothing seemed amiss until he got home.

  ‘What time is it?’ he asked Janet.

  ‘Oh, about half past ten,’ she replied.

  After a minute, he asked again. ‘What time is it?’

  ‘It’s about half ten,’ she replied again, assuming he had not heard her the first time.

  ‘But what time is it now?’

  Janet turned to face him, exasperated, as he sat at their kitchen table staring into space. Here was yet another moment in their long marriage when he was not listening.

  ‘Are you getting deafer or just ignoring me?’ she asked.

  She looked closely at his expressionless face for a moment until he spoke.

  ‘What time is it?’

  There was no inflection in the question.

  ‘What time is it?’ he said again.

  ‘What is wrong with you?’ She had been amused and then irritated, thinking that he might be making fun of her. Now she was growing wary.

  ‘What time is it?’

  She changed tack, as he seemed to be both speaking and looking into the distance.

  ‘Okay, enough now’, she said, raising her voice. ‘We have things to do before the restaurant opens.’

  ‘But what time is it?’ he said, as if she was not even in the same room. Janet tried to remain calm as she sat down beside him and held his hand.

  ‘Nath, are you okay?’

  A dropped beat, a blink of an eye. ‘What time is it?’