Children of the night

It’s a little after four in the morning and already I know that further attempts at sleeping will be futile. It doesn’t matter when I go to bed I’m always woken at four. And it’s always by the milkman on his rounds.

I have two points to make here. Firstly, why does it have to be at four in the morning? What’s wrong with say six? And secondly, what kind of milkman delivers dairy goods in a Subaru? I was accustomed to the gentle whining of the milk float’s electric motor punctuated by the clinking gamelan of empties. Soothing almost. Which is more than can be said for the supercharged snarl of the Subaru making its rounds. They may not even have been in my street, so loud is the sound.

But, milk float or rally car, the effect is the same. I’m awake and, if not exactly alert, at least teetering on the side of wakefulness over somnolence. This, as any parkie will tell you, is bonus time – those nameless hours that span the time until the rest of the world stirs. In the kind of perverted logic that sacrifices sleep on the altar of stupidity, we arise like a legion of zombies from our beds, switch on the computer and watch YouTube or drift through the chat rooms until the grey light of day. We know we shouldn’t but still we do. We are children of the night.

As dawn breaks, we sip espresso, breathing cold swirls of condensation, triaging our email – delete, answer or ignore. The usual misspelt ‘personal’ invitations to launder untraceable Angolan dollars, life changing secrets of the stock market, never-to-be-missed offers on plastic surgery (two nips and a tuck) for one all-inclusive price. The usual stuff. All deleted unopened.

Then there are the more marginal but invariably unsolicited invitations to upgrade my satellite subscription. For additional £5 a month I can have a further 10 shopping channels, endless reruns of half baked sitcoms that should have long since been put out of their misery, and ‘gems’ from the Ready Steady Cook archive. It could be worse – those unfortunate enough to answer within a week receive an additional secret gift which, too late, turns out to be an endlessly repeated treasury of Graham Norton celebrity interviews. Sometimes, if in the mood for sport, I will call the 24-hour freephone number where, I’m assured, “operators are waiting to take your call” to ‘discuss’ their offer. Mostly I don’t. Note to self: cancel the cable subscription. Then there is the weekly invitation from Who’s Who to be part of their next edition. All for a temptingly modest sum upfront and an annual subscription to cover the costs of the “lavishly bound” leather covered volume. I think not. Does anybody fall for this nonsense?

Nestling amongst this quasi-criminal, vainglorious twaddle are prescription transcripts, reminders of elapsed
computer-generated hospital appointment advisories and magazines profiling the condition. Worthy but interesting. Usually they are enough to induce the kind of sleep I have otherwise struggled to attain. Perhaps I should stop trying to sleep in a bed and simply sit at my desk once I have put my pyjamas on. Whatever works.

I have taken to siestas recently, bowing to the need for sleep over the need for coffee. Well, I call it a siesta but it’s not a formal siesta as such. More a sort of crash landing on the bed in an undignified heap. A sort of belly flop. Sometimes not even entirely on the bed. A kind of disaster siesta.

I’ve been thinking a lot about sleep recently, since reading Matthew Walker’s book which, in an inadvertent tribute to the author, I find particularly somnolent. Don’t get me wrong, it’s an excellent book, full of science and practical advice. But there is a certain irony to a book entitled “Why we sleep” when its primary readership is those who don’t.

Over the many years of my insomnia, I have learnt depressingly little about its nature and how to combat it. You tell people you have insomnia and their responses usually one of “then go to bed earlier”, “yes I get that” or “you should take something for that”

Really? Do you think so?

I have tried every sleeping tablet you could imagine (and many you probably couldn’t). I have tried herbal recipes from across-the-board, infusions of improbable garden herbs, tinctures of this, tizanes of that. I have listened to the mating calls of humpback whales, chirping crickets in tropical rainforests and babbling spring brooks. Whilst considerably more soothing than listening to the foxes wailing outside, I cannot vouch for their efficacy. In fact I worry more about the people who recommended these therapies. Just how did they discover that humpback whales humping (or any whale for that matter) might send you to sleep? Has this been subjected to proper scientific scrutiny? I’d be surprised. And what kind of person conducts those experiments anyway? I think I’d rather not know.

Talking of conducting experiments, I’m testing a device at the moment. Two speakers and a central programme tablet which emits some kind of slow pulses intended to mimic or induce normal sleep patterns. No results yet – hold your horses. I’m trying to evaluate it as scientifically as possible. Sleep is notoriously vulnerable to placebo effects.

The device in question comes with a swathe of positive testimonials from those who have tried it and been satisfied. There’s not a lot of data on precisely what they consider to be success. More sleep? Better sleep?Plus the thing carries an eye watering pricetag. If you bought “his” and “hers”, you would not have much change from a grand. Justified I’m sure if it works, less so if not.

So I’m looking at time to onset of sleep, duration of sleep, number of times woken and quality of sleep whilst, at the same time, factoring in as many confounding variables as I can think of – things like temperature, food intake and timing, lighting, ambient sound, drug regime and so on. Essentially I am trying, like all good scientists, to turn subjectivity into objectivity.

Watch this space.

Writers and writing

I am uncomfortable with badges in general. Butcher, baker, candlestick maker (incidentally who does that these days?). Tinker, tailor, soldier, sailor, rich man, poor man and so forth. Badges pigeonhole people. They are diminishing not encompassing. Badges belittle. So I am uncomfortable with their overusage. In any case, few of the above descriptors apply in 21st-century parlance. Everyone is either a media consultant, a lifestyle guru, communications analyst, or website designer. Even the dustmen are now tarmacadam surface cleansing technicians, whatever the hell that means.

Not surprising then that such descriptors unsettle me. More to the point I am specifically uncomfortable with badging myself. For much of my life it has been easy, sequentially climbing each rung on the academic ladder: student, doctoral student, postdoc, lecturer, senior lecturer and reader. I never made it quite to professor before my academic career ended, a fact that still rankles some two decades later.

In terms of broad subject arena, I used to describe myself as a neuroscientist and, whilst I led a neuroscientific research lab, it seemed reasonable. But those days ended nearly 2 decades ago and any current claim to that noble epithet is, at best tenuous. If you don’t conduct research, it’s hard to call yourself a neuroscientist. With the onset of retirement, my grip on any neuroscience title hangs by a thread.

Friends – well, the kinder ones – tell me ‘neuroscientist’ is still appropriate, reflecting perhaps the primacy of past achievements over current standing. That makes me feel a little better even if I’m not sure I buy it myself. But if I’m not a neuroscientist, then what am I?

It feels a little awkward to call myself a writer. I have friends who are genuinely writers, their work published, acknowledged and recognised as such. I don’t mean blogs and bloggers although (seeing that I am digging myself into a hole) some of those can also legitimately be considered the work of ‘writers’. Many however are not, being little more than vehicles for political rants, social commentary, hobbies and interests. Nothing wrong with that. Everyone needs an outlet and, if a blog provides such a mouthpiece, so be it. It works for me, a convenient space to contain and constrain my ramblings and meanderings. I’m happy to hold my hand up as a blogger. But a blogger is not necessarily a writer.

I certainly don’t consider myself to be a writer or any suchlike. Writers are people like Hemingway, Kerouac, Twain, Austen, Joyce, Elliot, Dickens and Kipling. Those are writers. And there is a world of difference between what they did and what I do. But, in the sense that I am paid (sometimes) for what I put on paper, I suppose I am a writer of sorts. And you can see why I’m uncomfortable with the title. It doesn’t sit well.

For me, writing is a noble profession and writers estimable practitioners of the same, their work unconstrained, free-flowing and imaginative. Others might define it differently as little more than a process by which facts are conveyed. For me, that’s not writing. Technical writing is a grim bastardisation of the profession. I know. I’ve been there. In one of the darker corners of my curriculum vitae are the several years I spent fruitlessly trying to get back into academia. Nobody, as I know now but didn’t then, wanted ex-academic fortysomethings. But the kids still needed feeding so I reinvented myself, dividing my time as a psychology lecturer with the Open University and as a medical writer. The former briefly pandered to my lingering academic pretensions while the latter paid the bills. I wasn’t proud.

Let me put in a disclaimer here. I have a good many friends in that industry that I admire and appreciate. Lifers. And maybe for them this was the chosen path. But not for me. I resented writing other people’s research. It felt wrong. Still does to be honest. It didn’t feel like writing. One day I will shine the torch more deeply into those dark recesses. But not today.

It brings me to my final point about writing. Writing is not the squawking of a caged bird. Writing must be free. Writing is soaring the thermals at sunset, catching insects on the wing. That’s writing. And that’s the work of writers. And I know one thing for sure. I’m not there yet.

The diva, the boffin and me.

As time passes, my memory fades on some of the peripheral details. It was sometime in the early 1980s at the Wigmore Hall in London where I was waiting for a concert.

I glanced down at my watch. 7:10 and a steady drizzle was encouraging the concertgoers to file in. The concert in question was sold out many weeks in advance, long before I was aware of it. But fortune smiled on me that day and a friend ducked out, generously passing on his ticket to me via a fellow student. I was still waiting for Aidan, uncharacteristically late for a mathematician who prided himself on precision. When he finally appeared, joyfully waving the tickets at me in a manner that precluded any serious admonishment, I was greatly relieved. Not least because, standing in the rain, I needed to be greatly relieved.

You will perhaps forgive me for dabbling in hyperbole but, in classical music terms, these were the hottest tickets in town. A rare recital of the Wesendonk Lieder [1] by the great Wagnerian soprano Gwyneth Jones – Bayreuth’s celebrated Brunnhilde for much of the 1970s [2] and early 1980s. One of my absolute musical heroes.

After a brief exchange of tickets, money and banter about keeping a lady waiting, we headed for our seats. Or would have done had a taxi not drawn up immediately behind us. A lady’s voice from within the cab called “excuse me, young men…” in a tone that made bystanders look as much at us as the source of the voice. “Yes, you two” she said “you look strong”. Aiden and I exchanged looks of bewildered amusement.

Anyone who knows me at all knows that my physique is not that of an Adonis. I have a barrel where others have a sixpack. And matchsticks for arms. My PE teacher at school once asked me if I would ever consider bodybuilding. I told him body building was unlikely as I would, almost certainly, not get planning permission. In short, I don’t get called strong very often. Or at all. Ever.

Still, the tone of her voice made it clear that we were to assist in such manner as she needed. After a brief ‘discussion’ with the cabdriver over the fare (the cabbie capitulated quickly), she turned her attention to us, the strong men, and outlined our role. Once she had extracted her husband’s wheelchair from the taxi, we were to extract him from said vehicle, make him comfortable in the chair and wheel him to the awaiting disabled seat at the front of the auditorium, brushing aside anyone in our way. Aiden pushed while I cleared a path with more ‘excuse me’s than a tea dance at the Ritz.

“Do introduce yourself dear” she said to her husband. He tried – it was clearly a big effort – and, in stroke-scrambled speech managed to say “I’m Peter M*****”. I didn’t catch his surname, so slurred was his diction. Eventually we made it to the front, the journey interrupted by several “Hello Peter, hello Jean”. Just as we turned to find our own seats Jean said “We are having a little supper with Gwyneth afterwards. Would you gentlemen care to join us for a drink?”

The concert itself was magnificent. Gwyneth Jones had, at that time, a glorious honeyed soprano voice, Effortlessly ranging from the delicate intimacy of lieder to the soaring peaks of the Wagnerian canon. A voice capable of whispering the words of a song as though in your ear or taking on the massive wall of sound that is a Wagnerian orchestra in full charge. A voice of subtlety, emphasis, tenderness and beauty, all capable of being delivered at heroic volume. But of course she was Welsh and all Welsh can sing!

But who was Peter? He looked faintly famous and certainly the greetings from other members of the audience seemed to support that but I couldn’t quite place him. Then I remembered I had seen his picture whilst at school which was doubly confusing. Why would he be featured there? Was he a writer? An artist perhaps? Or a scientist? As the music played, I ran through the mental desk file of famous people who went alphabetically to my school [3] until I reached M and one Peter Medawar. Indeed the science block was named after him. And of course his portrait hung there.

It suddenly dawned on me that I was in the presence of one of the most celebrated biologists of his generation. And this generation included people like JZ Young, JBS Haldane and JD Bernal. Sir Peter, for it was he, had won pretty much every prize in biology there was. Indeed it went further – there are even prizes in biology named after him. In 1960 he was awarded the Nobel prize for his work on tissue grafting, research which provided the groundwork for modern organ transplantation. In short, a genius.

His achievements were breathtaking, his life strewn with academic and civil awards and titles. Indeed he would have been president of the Royal Society had not a stroke rendered that impossible. Medawar was also a prolific writer on science and the philosophy of science. One of my most treasured possessions is a first edition of his book “Advice to a Young Scientist”, still essential reading for anyone starting out on a PhD.

That much was well-known. Less well-known was his passion for cricket, philosophy and opera – especially Wagnerian opera. He was a polymath in every sense. My favourite kind of person.

I still treasure that remarkable chance encounter some 40 years ago, often playing over the details in my mind. After all, it’s not every day you find yourself invited to take a glass of fizz with the greatest Wagnerian soprano of her time and a Nobel Laureate.

[1] I can’t be absolutely certain it was the Wesendonk Lieder. It could just possibly have been Richard Strauss’s Vier Letzte Lieder (Four Last Songs). But they are both magnificent song cycles for a soprano.

[2] Gwyneth Jones sang her first Wagner role at Bayreuth in 1966 and her last in 1982. She was Brunnhilde from 1975 to 1980 and starred in the infamous centenary production under the direction of Pierre Boulez and Patrice Chereau.

[3] I went to Marlborough and, like Medawar, didn’t much enjoy it. Nonetheless it has, in its time, had a few famous pupils – Sir Francis Chichester, Siegfried Sassoon, Capt Mark Phillips, Kate Middleton, John Betjeman, William Morris, Anthony Blunt, James Runcie, Chris de Burgh, Jack Whitehall and John Zachary Young to name a few. I must’ve been quite a letdown.

DBS Diary 04: Dr Stamford and Mr Hyde

When you stop to think about it, it’s hardly surprising that DBS is associated with some degree of behavioural change in those given the procedure. In part that’s the reason to do DBS – to change things.

That’s perhaps a little glib. When you “change things” in the brain you alter the activity of at least one neuronal pathway and, because such pathways are close proximity to others, most likely more than one. Depending on the placement of the electrodes one may get more or less stimulation of our desired pathway relative to the unwanted stimulation effects. Think of it like darts. If you aim for the treble 20 with your three darts you may get lucky (or be incredibly good at darts) and score 180 (60+60+60). If your aim is off by a couple of centimetres vertically, you may well score only 60 (20+20+20). A few centimetres horizontally and your score could be as low as 3 (1+1+1). And yes, we’re being ultra pedantic, you could miss the board altogether and score 0+0+0. But in that case you should probably just give up darts (or, by analogy, neurosurgery).

The point is that there is a ‘sweet spot’ within the subthalamic nucleus where one gets most benefit at the least cost. That seems to be in the superior lateral parts of the nucleus.

So in other words, perfectly placed electrodes can be thought of as a 180 score. But most of the time, and bearing in mind that this is the brain not a dartboard, the scores are lower. And that’s not placing any burden of responsibility upon the neurosurgeons; that’s just down to variability in our patient brains. None of us (well, few of us) have supermodel brains, perfect in every curve and tuck. No, most of us have rather frumpy brains, sometimes asymmetric but often – especially by the time we are considering DBS – misshapen or battered in some way or other. So, even if your neurosurgeon is the best darts player in the world, he will struggle with your tatty old darts board.

Okay, and I realise I’m testing your patience with a further analogy, but think of the subthalamic nucleus once more as a busy railway station. Lines (neuronal pathways) pass through the station. Some terminate, others carry on. Some stop briefly, others pass through without stopping. Think of DBS as the equivalent of a transient signal malfunction. Traffic through the station is disrupted for some lines more than for others. Some are even reversed. No, I know this doesn’t fit with the darts analogy. Forget the darts. We are on trains now.

So where do the railway lines go to and come from? As you can imagine, there are many. The subthalamic nucleus is Clapham Junction. Neurones come in from the cerebral cortex, and parts of the thalamus. Trains, sorry neurones, leave for the substantia nigra.and beyond. It has reciprocal connections with the internal and external globus pallidus and the pedunculopontine nucleus.

The point I’m (rather laboriously) making is that we cannot affect individual lines – yet. Whatever stimulation parameters we choose, it will always affect adjacent brain nuclei to some extent.

What does that mean?

In simple terms it can mean changes in behaviour, affect, emotion and action. Mostly trivial and perhaps even unnoticeable but occasionally more extreme. in some cases, changes of personality have been noted. Again mostly minor modifications but occasionally more profound changes.

If I’m honest, this worries me a little. I like to think, and perhaps I’m flattering myself, that I am a reasonably nice human being. I try to be friendly, to do the right thing and so on. I’m no saint but I hope there aren’t too many people out there I’ve offended or upset (unless intentionally obviously). I’m reasonably comfortable in my skin. I don’t want to find my personality changed out of all proportion. I don’t want to be apathetic, depressed, anxious or disinhibited.

Of course there is no way of knowing whether any of this will happen. It may be plain sailing. I may emerge psychologically indistinguishable from my pre-DBS form. That would be wonderful and, in many respects, is the most likely outcome. I’m probably fretting over nothing. But lurking at the back of my mind is the concern that inside my Dr Jekyll, there is Mr Hyde, just waiting for those electrodes to release him.

Greta and Gaia

For a long time, perhaps too long, we have regarded the earth, literally and figuratively, as a mother, a benign provider, supportive of our endeavours and blind to our faults. It has suited us to do so. We have treated natural resources as though they were infinite and our use of them justifiable. Our thinking has been limited to a timescale of years rather than decades, centuries and millenia. And we have been negligent of our impact on the planet’s resources, turning a blind eye to the earth’s fragile biosphere. Throughout we have assessed the extent of our damage through rose tinted spectacles, been selective with the evidence, dismissive even when uncomfortable. We have all allowed this to happen either by commission or omission.

Sure we have been vocal about the urgent need for change, with our fingers crossed behind our backs, endorsing toothless policies couched in empty language. We have made schoolkids into celebrities, patted them patronisingly on their backs whilst doing nothing. Taking a selfie of yourself with Greta Thunberg is not a commitment to meaningful action. But then it’s easier to applaud than it is to act.

How will we answer for ourselves in front of our children? How will we explain our wholly inadequate custody of the earth? How will we justify the systematic abuse of their planet on our watch? Can we really look our children in the eyes and tell them that we thought it was for the best?

We have changed the map of the world forever. All that Amazonian deforestation, who raised a hand? Islands the size of Spain made entirely of plastic. Who complained until our holiday beach snaps were littered with milk cartons, plastic toys and kinder eggs? And who, in the face of volatile petrol prices, was prepared to concede that our love affair with the internal combustion engine was an abusive relationship?

Before you bridle at my preaching, let me stand up and say Mea Culpa. I never made the connection between South American logging and climate change. I never worried about plastic mountains and valleys. I drove big gas guzzling sedans where I could have chosen differently. I admit it.

But that’s not enough. I do not absolve myself with the panacea of ignorance. The truth is, when we turn the spotlight upon ourselves, that we did make the connection between losing forests and gaining carbon dioxide. We did know that plastic would be in our environment forever. We did know that big thirsty engines polluted more. You see what I mean – we are even kind to ourselves when we know we are wrong.

I am 63. To quote Roy’s final speech in Blade Runner, I have seen things you people wouldn’t believe. I have lived through what you might consider to be the golden age of consumerism, an age of plenty. LPs and CDs reproducing music with infinite fidelity. Television and radio reaching all parts of the globe. Computers shrinking from the size of houses to the palm of your hand. The Internet and the democratisation of information. Hyperrealistic videogames. Virtual reality for those who can’t cope with real reality. I watched a man walk this on the moon. Supersonic airliners briefly shrinking the world. Cruise ships the size of cities wandering from sunspot to sunspot.

And now, in 2021, we find ourselves like acquaintances at the end of restaurant meal, our gaze downward to avoid eye contact, wondering who will pay. For pay we must. Because it’s time to realise the uncomfortable truth – that this was not our planet to abuse. We have ruined it for our children. How are we going to explain that? I didn’t know? I didn’t think it was important? I didn’t realise it was happening?

I don’t think it matters. That may seem a ridiculous position in the light of everything mentioned above so let me explain. I don’t think it matters because I feel we may already be beyond the tipping point. We have been consistently told that we have a decade to mend our ways or face catastrophic change. I don’t think that’s the case. I believe we have already done so much damage to the planet’s biosphere that we cannot reverse it. There is no consistent agreed and enforced global climate policy. Nor will there ever be one. Every climate accord has opponents. Trump (and I really hoped I would never have to write his name again) sacrificed the planet on an altar of consumerism. He had the opportunity and could just, only just, have made a difference. He chose not to, presumably secure in the knowledge that his kids would pick up the check.

Greta expressed it better than anybody when she said that our house is on fire, lending a sense of immediacy and urgency to our actions. Sadly, she, like Trump, seems no longer relevant. The prickle of conscience in 2019 was swept away in the viral terror of 2020. Greta’s message is as clear as ever. But nobody is listening. We have become obsessed with our own homes, our micro environment, that the world and its issues seem more remote.

In the 1970s, to initially only polite interest, James Lovelock began to expound his theory of Gaia. Named after the Greek goddess and conceptual embodiment of the earth, the Gaia hypothesis postulated that the entire planet’s biosphere was essentially a large symbiotic organism of infinite complexity, capable of autoregulating its own environment. In essence it responds to challenges to its own existence with appropriate correctional strategies. If a species brings value to the Gaia biosphere, conditions will provide succour. If on the other hand a species threatens the integrity of the whole, Gaia responds accordingly.

And how might Gaia respond to a species that has created all this damage? A virus perhaps that might endanger human life? Maybe coronavirus was merely Gaia’s warning. An indication of what mother Earth is capable of. Maybe explosive global warming will be her definitive response to man’s intervention. The notion of Gaia has no place, or at least no special place, for humanity. We are merely one of a great, but rapidly dwindling, number of species. It cannot have escaped Gaia’s notice that we are, in planetary terms, a bit of a problem. Maybe she’s decided to act.

Everywhere in the world, weather seems more extreme. The benign bountiful earth of Constable replaced by the violent elemental malevolence of Turner. The forests burn, the seas boil, the icecaps melt. This is not the future, this is now.

Gaia has had enough.

DBS Diary 03: Drug-crazed double glazing salesman

DBS Diary 03: more questions than answers. Fundamentally I had made my decision upon leaving the hospital after the meeting. I would go ahead with DBS. There really isn’t much else in the way of choice. Yes it could all go horribly wrong but the likelihood of that is very low. Yes it could abolish my tremor and help make me less stiff and more mobile. The likelihood of that, by comparison, is very high. And so on. In simple terms I’m balancing the high likelihood of major physiological improvement against the low probability that I could have a stroke or die on the operating table. It’s a numbers game, nothing more more nor less, with a very wide range of potential outcomes, mostly good. I don’t plan to dwell on the extremely bad outcome scenarios mainly because I have little to say of them. And in the case of the worst possible outcome, obviously I will have nothing to say. But I will be in the hands of men and women who do this every day. I am as comfortable with my decisions as I hope they are with their incisions.

Of course I should have done this first but, over the course of the last seven days, I have been speaking to many of those who have had DBS previously and their stories are illuminating. Not universal certainly, but personal and therefore all the more valid. Some have been reticent, others vocal and in the vast majority of cases, their information has been helpful in making my decision (neglecting for one moment that I had already made the decision). I tried as much as possible to get a random sample of the experience of DBS. I didn’t simply pick the zealots or doomsayers. In the end I think I got a good range of opinion from DAJ, DS, CHH, BC, BL, DP, VA, RB, BS, HK and BT. Among others. Apart from one or two who had a handful of what might best be described as cold feet or post-operative misgivings, the response was universally positive.

To be honest, I was a little sceptical initially. It felt as though they were all reading from the same script, all coerced into speaking the same lines. And were these people I did not know that view might have persisted. But these are all friends, fellow Samurai on the same path of enlightenment. Their views left me wondering what might have happened if I had summoned up the same courage say five years ago.

It’s academic of course. Five years ago I was at a different point on my Parkinson’s trajectory, a more positive point with sunlit scenery. Five years later, there are clouds in the sky and the feeling of rain on the horizon. So it’s impossible to compare directly. Five years ago I did not feel I needed DBS. I felt the drugs could manage the condition. Five years on, I don’t feel the drugs are doing the job. So it’s time for DBS.

When I say time, I do mean actual chronological time. DBS works best in patients who get a good response from the drugs. It is less successful later in the treatment sequence. Put simply, if the drugs aren’t working, don’t expect as much from DBS either. Five years ago I wasn’t ready for DBS. Now I am at that point of acceptance. The irony is that, had I been ready to accept it five years ago, I would have had a better response in all probability. Catch-22.

But what determines readiness? I’m ready, or at least I believe I’m ready now. And I base that on a number of factors. Parkinson’s is a neurodegenerative disease. In other words I’m getting worse. Today was not as good a day as yesterday. Tomorrow will not be as good as today. And so on. Neurodegeneration focuses the mind somewhat. Rather like those people come to the door offering double glazing at a spectacular discount but only if you sign up on the spot. That’s neurodegeneration. So, in a manner of speaking, my brain is coercing me into reluctant surgery. But surely, it’s still the same ‘me’ making the decision whether it be today or five years ago. Well, actually no. It isn’t. Because today me is taking rather more in the way of mind altering drugs (prescription I mean) than five years ago. So now my decision is being forced by a drug crazed double glazing salesman of a brain. Not surprisingly, my mind is bullied into submission. I choose the DBS. What else can I do?

Who are you?

I often wonder what kind of person reads my blog. I can make guesses but generally I’m in the dark. I don’t keep metrics on my website, I don’t know how many people like, dislike, subscribe, click or whatever. I have no notion of what smileys they would use in their response or anything like that. There is no convenient little form on the website that people may complete out in order to ask me questions. My address is on the website and, with a little hunting, can be found. I don’t list the email address in the actual form it would be used – this is in an effort to minimise the number of robotic comments that would otherwise drown the website in a tsunami of spam, a deluge of defamation or an avalanche of antipathy. But if you want to send me a message, and please do, you can find the email address under the “Me” tab on the menu bar.

Why do people visit my website (if indeed they do)? Although some people may read posts and disagree profoundly, I guess that this is a minority. Very few of us will buy a newspaper with opinions diametrically opposed to our own. We might do it every once in a while to get something approaching balance on reporting but it’s unlikely that we will persist with this self-flagellation. On the whole, people buy newspapers that agree with their outlook on life. I think blogs are much the same. People do not generally continue to read a blog if its views are consistently different from one’s own. I certainly wouldn’t. Life is too short.

So this leads me to the obvious conclusion – that your public preferences, interests and private predilections are similar to mine. Perhaps not similar overall but close enough, some of the time, to find it worth returning. I only mention this because I would like to know something of your preferences. On the whole, you and I must have something in common or else you would not have read this piece or the many others on the website.

Eventually I begin to form a picture of you as you probably do of me. I think you probably have a dry sense of humour and a sceptical view of novelty. I guess you enjoy good food and can tell your foie gras from your liver and bacon. I’m suggesting you prefer French reds to Californian whites, British bitter to continental lager, Jags to Beemers. I think you would rather have a small dinner party than a huge disco, stimulating conversation to deafening shouts, malt whisky to Bailey’s, a weapons-grade espresso to a bland Americano. Perhaps you even like Wagner, although I struggle to believe that there is many more than one person out there who does, other than myself.

I would like to believe that you enjoy my writing, not just my opinions. I like word games, alliteration and hyperbole. Sometimes I choose words with studious care, like an engagement ring. At other times I grab a handful and throw them, Jackson Pollock style, onto the page. I like to keep dying words alive – like outwith, so rarely heard south of Kelso. I like making words sing and dance or stand, like a guard of honour, in unflexing line. Do you feel the same?

Maybe I’m wrong. Maybe you are nothing like me. Perhaps you prefer skeleton dry clarity to the well fleshed verbiage of circumlocution? Maybe you merely tolerate these lexicological longueurs in the vain hope that I will eventually get to the point.

Maybe you know me. Maybe you don’t. Maybe you have a picture of me in your mind, quill in hand, writing, after midnight, by flickering candlelight. Or perhaps you see me dictating into my computer in the bright morning sunshine, sips of coffee bringing words to mind, blinking in the light.

When you write a blog, or anything really, you invite opinion, agreement, disagreement, anger, laughter and a whole bundle of other stuff. On the rare occasions that I do receive direct feedback, it is usually pertinent, well-written and unambiguous. Mostly it is to agree, in general, with something I’ve written but to question detail. Sometimes it is to argue a counter position, forcibly and directly. Most people don’t write to me if their experience is neutral.

At the end of the day I can only guess why you read my blog. What do you get from it? Will you return? Did you return even? I would love to know your thoughts.

Terunofuji, yokozuna!

I’ll let you into a secret – I have been a follower, a fan even, of sumo for more than two decades. I even have my own black silk mawashi, the loincloth in which they wrestle, a gift from a sympathetic friend. Yes I appreciate the image of me in a mawashi is not for the faint-hearted and I apologise for that.

There is, of course, no sport quite like sumo and to the non-Japanese probably none more bewildering – two fat blokes trying to push each other over, yes? For the vast majority of casual observers these notions represent the limit of their understanding. Images of inflatable costumes at comedy events. The target of contemptuous laughter rather than reflection on a serious and treasured national sport with roots in Shinto and rituals over a thousand years old. Yet to disparage sumo is to deny oneself deep insight into the Japanese lifestyle and psyche. For sumo, with its infinite emphasis on belief, symbolism, ritual and meaning holds up a mirror to Japanese society.

Professional sumo in Japan is organised into six divisions but only the top two – juryo and makunouchi – need concern us. Juryo is like a giant railway station for wrestlers (rikishi) either slipping down the rankings towards retirement or stopping briefly on their road to the top. Everyone is going somewhere – acclamation or oblivion. The top division, makunouchi, consists of 36 wrestlers subdivided into a further five categories – you still paying attention? In ascending order these are maegashira, komosubi, sekiwake and ozeki.

But that’s only four categories I hear you say. Good, you have been paying attention. And yes, there is one further category, the very apex of sumo society – the grand champion or yokozuna. I’ll come to that.

In Japan, that most hierarchical of societies, the banzuke or table of rankings is everything. A measure of one’s worth against one’s fellow wrestler. Yokozunas, East and West, stand at the top of this ranking. Below them, their position determined by their performances on the dohyo, are the remaining wrestlers. The mere champions or ozeki can lose up to a third of their bouts without questions being asked. One of the privileges of achievement. There is a certain degree of fluidity in the ranks up to and including ozeki. It’s a bit like snakes and ladders. Throughout the lower ranks, a winning record or kache koshi (8-7 or better) takes the wrestler up the ranking ladder while a losing record or make koshi has him sliding down that snake. Ozeki are given a little more breathing space. A losing record in the tournament makes the offending champion kadoban (at risk of demotion). An ozeki needs to have a losing record in two successive basho to forego the rank.

Seated high above the everyday comings and goings of the banzuke, yet central to them, the yokozunas are under close scrutiny at all times. You might presume that, if an ozeki gets two shots at retaining their rank, a yokozuna might get three. Yes? Alas no. For a yokozuna there is no such leniency. A yokozuna simply cannot lose. Nor can the be demoted. The only out for yokozunas is retirement, sometimes after not-too-subtle prompting by the Sumo Association. A yokozuna who loses more than two bouts of the fifteen that compose a tournament or basho will often diplomatically acquire an injury mid-basho that necessitates his withdrawal from the tournament. Those that eschew withdrawal and fight on risk resignation. And heaven help the yokozuna who ends a tournament make koshi. It has only happened twice to my knowledge in over a thousand years. Despite these strictures, yokozuna remains the highest aspiration of any sumo wrestler, the definition of their careers.

In many ways, yokozuna is more than a mere ranking on the banzuke. Yokozunas stand apart from the rest of the classification. While the others are wrestlers representing their own stables or beya, yokozunas are essentially gods or kings with a spiritual commitment to the sport itself over their individual beya. Promotion to yokozuna is based not just on performance in the ring, or dohyo (which nonetheless needs to be exemplary), but on their dignity of character and embracing of their position in Japanese culture. Upon promotion, many new yokozunas often spend time at one of Japan’s many Shinto shrines to get them into the right frame of mind to assume the duties of a god. That’s why Japanese wrestlers have a head start. So few yokozunas are foreign but I’ll come to that later. Fewer than one in thousand wrestlers will make it to yokozuna.

Until Wednesday there had only been 72 yokozunas in the history of sumo, more than a millennium long. On Wednesday, the 73rd, Terunofuji, a Mongolian rikishi was chosen. Making a brief appearance for the media, Terunofuji thanked the authorities for their endorsement of him and promised to uphold the historic values of the yokozuna.

Terunofuji’s promotion marks the final step in what has been an unprecedented climb from the depths of the banzuke. But in reality his promotion masks flaws and inconsistencies in the appointment of yokozunas. Many overseas wrestlers feel they have to exceed higher qualifications than their Japanese equivalents in order to be found in possession of hinkaku, that elusive combination of power, skill and dignity upon which putative yokozunas are assessed. Often overseas wrestlers are found wanting in one or more of these nebulous criteria and fail to make yokozuna. Nowhere are the criteria written down. Typically at least two tournament victories without a lapse in performance in between are needed for consideration as yokozuna. Occasionally, for a Japanese wrestler such as Futahagaro, at a time when there were no other yokozunas, the bar was set as low as two runner-up tournaments. He never won a single basho as yokozuna. Or at all. Scalded this by the fallout from the premature promotions of Futahaguro, Onokuni and others, the board has tended to be reticent in its more recent dealings. Terunofuji was given the target of three successive tournament wins or equivalent, a breathtakingly tough and exacting requirement. Nevertheless he won in March and May. On Sunday he finished second only to Hakuho, fulfilling the criteria set out. And on Wednesday he became the 73rd yokozuna. Here’s how.

Banzai!

DBS Diary 02: Rolling the dice

Yesterday was the big day. Well, technically, one of a number of big days. But, in this case, the day upon which all other days rest. The day I met the hospital’s multidisciplinary DBS team and they had a chance to meet me. Four of them, two of us (my younger daughter came to assist) and a nominal three quarters of an hour to answer some pretty big questions. Put like that it begins to look like speed dating. Except for the fact that several of them wanted to stick electrodes in my brain. Not there and then you understand but at some point.

I was expecting a sales pitch in essence. I was expecting to be bowled over by hyperbole and misplaced enthusiasm. I could not have been more wrong. We talked about realistic expectations, about side-effects, about benefits and so on. And all in the most sober down-to-earth manner. They did not try to “sell” me on the idea of DBS. Throughout the consultation they emphasised that it was my decision and mine alone whether to go ahead but that, in their view, I met the criteria for DBS. The ball was in my court.

But the thing that impressed me most was their willingness to bandy numbers with me. Now, as you know, I am a grizzled old neuroscientist, strong on statistics, light on fluffy feelings. Like so many scientists, I am unmoved by “very rare” or “relatively common” or “in a proportion of cases”. One man’s “very rare” is another man’s “not at all” or “rare but not unknown”. It reminds you the old Woody Allen joke about the man and his wife separately seeing their shrink and answering the question “how often do you have sex?” with “hardly at all – maybe three times a week” and “constantly – maybe three times a week”. Well it made me laugh. But my point is that descriptors provide nuance but not detail.

Start using numbers and it’s a different matter. The moment you start saying “one in 30”, “62%” and “11/19”, you have my undivided attention. I understand numbers. Numbers are the language of science. My PhD supervisor and good friend Zyg had a very simple maxim – “if you can’t describe it in numbers, it’s not science”. Although I might quibble over the minor details, it nonetheless carries weight as a general rule. And so it was yesterday. They spoke to me in numbers, instantly setting me at ease.

In the end, DBS surgery inevitably presents risks. They explained them to me in numbers – my likelihood of dying, of being seriously damaged, of minor complications, and all the perioperative niggles. And they gave me the numbers for improvements in tremor, movement, stiffness and so on. And they told me all the things that DBS would not help such as balance, even gait to some extent. Each number was presented neutrally, with no change in expression to indicate personal views although, in fairness, the facemasks probably eliminated all nuances of expression anyway. Itwas all a case of deciding where the risk-benefit fulcrum lay and totting up the numbers.

My daughter and I were a good double-team. I would pitch in with the question, then she. We alternated, each presenting a different facet of our collective anxieties. And one by one they answered each to our satisfaction.

Perhaps the most personally satisfying moment occurred when I expressed my reservations about the likelihood of achieving the kind of results found in younger PD patients since I’m 63. The surgeon, with a smile I could see behind his mask, said it’s not a case of chronological but functional age and he had seen my MRI scans and was satisfied that this was a good brain without evidence of atrophy. In essence the cranial cavity was filled with brain rather than cerebrospinal fluid. Good to know. And fingers crossed of course.

All other things being equal, they felt I was a good candidate and were happy to operate with one proviso which I’ll cover in the next blog. The whole tenor of the discussion was positive and engaging. Once I had DBS done, I was part of their family forever. It was more than just a surgeon/neurologist speaking to a patient. They would look after me. It was warming.

Their final words to us, as we left, were that we did not have to make a decision on the spot. We should take some time, reflect upon it and then let them know the answer.

My daughter and I headed to a nearby coffee house to regroup and discuss what we had heard. Nothing is of course without risk. Would I considered this procedure 10 years ago? Obviously not. And I know for a fact that I didn’t even entertain the idea, so determined was I to fight the illness in my own way. But time brings a degree of maturity and understanding. We throw away the foolish fancies of youth and make sober judgements where once we would have dismissed with flippancy. But back then I needed DBS like a hole in the head (I’m sorry, I couldn’t stop myself).

Now I recognise it for what it is. Part of the modern armoury in the treatment of PD. Who knows, it may one day be a condition remedied entirely by surgery. Wouldn’t that be funny. True the procedure is mediaeval, barbaric even. Liked trephining, practised in Paleolithic times. Maybe they had DBS 3000 years before Christ. (No, don’t rush to Wikipedia). It’s not a serious suggestion.

Even for somebody who revels in numbers, it is quite sobering to apply them to one’s own predicament, to reduce one’s own future to a series of calculated risks and gambles. Rather like Douglas Adams’s computer in The Hitchhiker’s Guide to the Galaxy, my future could be described by a relatively simple quadratic equation. The probability of this, the likelihood that, the risk of the other. All reducible to numbers. Yes, things could go horribly wrong. I might even die. It is technically possible but extremely unlikely. Much more likely is that it would go well and I would achieve at least some meaningful benefit for the next several years. It comes down to a balance of probabilities, nothing more nor less.

I caught the train home with the surgical team’s words echoing in my ears. It was my decision and my decision alone. “Take your time”. I didn’t need to.

It’s time to roll the dice.

DBS Diary 01: How I reached this point

DBS Diary 03: The hard yards

DBS Diary 01: How I reached this point…

Okay, let’s start at the beginning. I have young onset Parkinson’s disease and was diagnosed with same 15 years ago, in late 2006. My symptoms, viewed with the benefit of hindsight, probably started a while earlier and rumbled along unnoticed for a couple of years.

Parkinson’s is notoriously unpredictable with some patients progressing very rapidly, others more slowly. On the whole I have not done too badly (touch wood). My neurologist is generally happy with me. My progression has been relatively slow compared with others I know who have deteriorated much more rapidly.

The drugs have helped, no doubt about that. But there comes a point when, almost unnoticed, they cease to have quite the same effect. It becomes difficult to obtain therapeutic benefit without almost equally disabling side-effects. Indeed some people with Parkinson’s find the dyskinesias worse than the tremor. And as one progresses with the condition, it becomes difficult to achieve a reduction in stiffness and tremor without experiencing dyskinesias. It’s a high price to pay and, eventually one begins to focus on alternatives.

I’ve been fortunate – I have been taking levodopa (the principal culprit when it comes to dyskinesias) for nearly 10 years now and have mostly been free of dyskinesias. This is relatively unusual. Most people experience the onset of dyskinesias after only five years of levodopa, give or take a little bit. Nonetheless, and despite the relative absence of dyskinesias, I do find that the medicines are less effective. Each tablet provides a little less benefit and does not seem to last as long. In essence, the drug wears off too quickly. This part at least is typical.

Recognising this watershed in my management of the condition, I have begun to look at alternative or adjunctive treatments. Many who experience such wearing off episodes resort to apomorphine to fill in the gap so to speak until the next dose of levodopa. This is unattractive to me for a number of reasons. Apomorphine is generally administered via a syringe into the belly fat. Don’t get me wrong, I have plenty of belly fat into which to inject. My principal objection, leaving aside my dislike of needles generally, is the practical difficulty of making such an injection while experiencing involuntary movements. And yes, there are other solutions to that such as pumps. But these are cumbersome and, to my way of thinking, equally unattractive. In any case, let’s not forget that apomorphine was initially used and marketed as an emetic agent at a time when drug overdoses were common. And I’m not sure I consider that to be the ideal pharmacological pedigree for use in a condition like Parkinson’s.

There are course other drugs available which can be added to one’s smorgasbord of medication specifically to reduce dyskinesias. And for the most part they’re reasonably effective. But I can’t get away from the feeling that the general concept of adding one drug to treat the side-effects of another is somehow conceptually flawed. Okay it works but where will it end? If drug A causes side effects and drug B reduces the side-effects of drug A, how long before we need drug C to treat the side-effects of drug B? On the whole it seems to me a better strategy to try and keep the total drug payload to a minimum.

Until a decade or so ago these were more or less the entirety of your options. More drugs. More frequent drugs. Additional drugs. Higher doses of drugs. Not a desperately attractive proposition. But fortunately not the only avenue of treatment.

Over the last 10 to 20 years, as the circuitry of the basal ganglia has been more thoroughly elucidated, the focus has shifted away from the pharmacopoeia to the operating theatre. Neurosurgery is becoming (or has become, depending on your perspective) a viable alternative to the usual pharmacological rampage.

Deep Brain Stimulation, or DBS as it is more commonly written has moved from experimental technique via niche treatment to its current status as part of the treatment armametarium in Parkinson’s.

Fundamentally the procedure is simple. Electrodes are inserted into specific areas of the brain, fixed in place and connected via wires to a stimulator/battery pack implanted at the shoulder. A remote-controlled device allows one to program the stimulator and an induction collar charges the battery pack once a week.

Although at first sight rather complex and intimidating, the circuitry of the basal ganglia is now well-established. I’ll go into the wiring of the basal ganglia later in another post but rest assured that the various relay stations and points of intervention are well known. Two electrode implantation sites have proven popular – the internal globus pallidus and the subthalamic nucleus. There is not much to pick between the two implantation sites – both achieve similar effects on tremor, bradykinesia and rigidity after 12 months. STN stimulations appear better after six months. But overall there is little difference and presumably choice of location reflects no more than the preference of individual neurosurgeons.

But what does DBS do? In simple terms it replaces the levodopa or a proportion of it. And less levodopa means less dyskinesias and other side-effects. In essence, it turns back the clock. Many who have had DBS talk about going back five years in terms of symptomatology. Personally I’m a little wary of using those kinds of descriptors. DBS is still only symptomatic treatment. It does not slow or delay the process of neurodegeneration. It merely masks the underlying pathology. You are still losing brain cells at the same rate with or without DBS. But at least the journey should be more pleasant for longer.

Around 18 months ago, I had a good discussion with my neurologist and asked to be considered for DBS. Needless to say, volunteering is the easy bit. Not everybody is suitable for DBS and, like the labours of Hercules, there are many tests to pass. Okay I don’t have to clean the Augean stables or capture Cerberus but, in their own way, the pre-DBS trials are just as challenging. These involve a pretty detailed assessment of motor function All the usual stuff – finger to finger taps, touching one’s nose, repetitive stamping and clenching fists. Basically the behavioural repertoire of the average young toddler. Then there is an assessment of language and psychometric tests (is this a smiling or a frowning face?) Before the dreaded L-dopa challenge. For some reason this makes me think of the ice bucket challenge so popular a couple of years ago. But it’s nothing of the sort. In essence is a series of simple motor tests but with one uniquely horrible twist – the tests have to be completed without medication. Gruesome. Then you get your levodopa and, three-quarter of an hour later, you repeat the tests.

If all goes well and you pass with flying colours, you move onto the next stage – meeting the neurosurgical team. This includes neurosurgeons, neurologists, Parkinson’s nurses and so on. A multidisciplinary team designed to check you over once again and make a final go/no-go decision.

That should have been around August 2020 but, as you’ll recall, we had the tiny little matter of a global viral pandemic to occupy our minds and empty our operating theatres. My own choice of hospital ceased nearly all nonemergency neurosurgery for more than a year as, like many other hospitals, they struggled to maintain any kind of functionality.

So I’ve had a lot of time to think about this and whether it’s right for me. Certainly my symptoms would seem to justify DBS and the surgery is relatively routine. Bad or disastrous outcomes are relatively infrequent and, when all comorbidities are taken into account, the procedure is straightforward. But, balanced against that, it is still a throw of the dice, a leap into the unknown. I reassure myself with the thought that many have gone ahead of me and, on the whole, had good outcomes. Needless to say, being of an anxious mien, I still fret over possibilities.

I just hope that, having steeled myself to have DBS, the surgical team agrees with me on suitability. That meeting is next week. I’ll be in touch again. Bye for now. Let me know your thoughts.

DBS Diary 02: Rolling the dice.