Author: JSadmin

I have long maintained that rats are the thinking man’s pet. Intelligent, capable, social, expedient and adaptable. In essence all the very best of humankind’s strengths, put together in a few hundred grams of fur and a tail. To be truthful, I think the tail puts a lot of people off. Amazing really that such a small feature should put off so many potential owners. For some reason we adore squirrels (essentially a rat with a bushy tail) but are not attracted to rats, their bald cousins.

Yet we live side-by-side, cheek by jowl with rats. It’s said that in urban contexts, we are never more than 5 m from a rat. That’s nonsense – it’s nearer 2 m. Rats live on what we discard. If we want to contain their populations we should be more efficient and throw away less. But that’s not really the point I want to make. Stick with me.

For several years I taught biological psychology with the Open University (OU). Incidentally for those of you who do not know of the OU, let me briefly sing its praises. Modular courses based around self tuition with a handful of face-to-face tutorials. The students are typically middle-aged, often unfulfilled housewives thwarted by feckless children and couch potato husbands. Having also previously taught in medical school where our next generation of doctors are truculent 18-year-olds, oozing privilege and entitlement but lacking interest or understanding, the contrast could not be more illuminating. Unlike the arrogant new generation of future doctors, barely shaving. (no, hanging a stethoscope ever so casually over your shoulders does not make you a doctor). Fulfilling their parents’ social aspirations with barely disguised disinterest they are a travesty of learning. The OU students are hungry for knowledge, hanging on every word a tutor speaks. Absorbing, admiring, appealing. The acme of what learning should be. There is simply no better group of people to teach than those who have been deprived of learning. I loved my time teaching oU students.

Okay, back to the rats. One of the ideas I tried, in order to teach my OU students was the notion of how behaviour manifested itself in animals and how we could learn from this. I had a simple routine – I would ask students who had a pet. Most did. Going round the class I would try to establish who had the most interesting pets for instance. Monitor lizards, bejewelled tree frogs and chameleons obviously trumped cats and dogs and mice. Typically, I chose one student and had them come up to the front and face the others. I stood by the blackboard with chalk. I gave them a minute to describe their pet. As they began to talk, I wrote keywords on the blackboard, in particular those that described behaviour or personality.

We, as a class, would then discuss how these might be assessed. For instance, Cuthbert the chameleon might be “quite nervous” according to his owner. How would we measure that? What would tell us if Cuthbert was more or less nervous after a given treatment for instance. How would we tell?

The students thoroughly engaged with this idea and were soon thinking up complex and elaborate ways of finding out whether Roland the rat, Gordon the guinea pig or Cuthbert the chameleon was anxious.

But why would we want to know if Gordon was anxious? Well without going into the whole pro/anti-animal experiment trope, this is the basis of how we learn about drug side-effects for instance. Or, if you are interested in anxiolytic drugs, this might be used to find which new molecules might be effective.

It’s still a roundabout way of finding out about drugs. If rats or guinea pigs could only talk, we would save ourselves a whole load of trouble. We would love to hear what the rats thought. All that information at our fingertips. Imagine that!

And here is where I get to the point. Imagine the rats and guinea pigs could speak and that humans, specifically clinical trial designers, were more or less wilfully ignoring what they were saying. Ridiculous. Obviously. Yet exactly this situation occurs in so many of our clinical trials. The guinea pigs (the patients) are speaking loud and clear yet so often without any indication of being heard. We are desperate to know what the rats might tell us yet completely oblivious to the very real information being offered by the patients.

It’s hard to believe, more than 20 years into our third millennium, that clinical trials devoid of patient input in terms of design, thinking, logistics or outcomes still exist. A trial designed in the absence of patient input is almost doomed to failure. And so it should be. It is the sound of one hand clapping.

Lucien Engelen of Radboud University, some time ago, initiated the scheme whereby a positive “Patients Involved” seal of approval could be applied to conferences. Why not trials too? Studies that involve patients in very real and practical non-tokenistic ways. I say it’s time to take the next step. It’s time to name and shame those trials that do not.

Because the rats can talk after all and it’s time we listened to them.

Everybody has, at some time, a fantasy car. I don’t care if you are an ultra environmentally conscious, muesli eating, zero carbon footprint person today. At some point in your life you were a little boy who dreamt of owning a classic car. For most it would be a high performance sports or racing car, something from the Porsche, Ferrari, Lotus, Lamborghini or Aston Martin catalogues perhaps. And yes, I do dreamt of such vehicles. As a little boy, it was as much about the sound and smell of these cars as their actual performance. Although inevitably I can remember the details of any car throughout the 1960s and recite, like a rosary, the key points: 422 big block, bored out to 436, KG5 ram supercharger, five-speed Hackett gearbox delivering 392 bhp on the road. Crabbe JT 74 shocks, Delta B28 wishbone with SideArm KL4 springs, 18 inch Zep 68 steel braced low-profile radials and a Hurst “big boy” manifold extender.

Actually, I made all of that up. I have no idea whether these things even exist but, if they didn’t, something else that was similar sounding did. Don’t forget, these were the days before Pokémon cards and so on. In my day it was cigarette cards which meant forcing one’s parents into smoking near lethal numbers of cigarettes in order to finish one’s collections with that 1949 Lamborghini. Or whatever.

I was different from most boys. And before your mind heads off tangentially, that’s not what I mean. What I do mean is that whereas Jack Colley, Rob Smiley and Kit Mollison exchanged details of high-end Ferraris, Aston Martin and Porsches, their chatter left me cold and peripheral. For me, cars were not about pace so much as grace. My godfather, a rural GP from generations of “old” money, drove a 1938 Rolls-Royce Silver Wraith. At weekends he would take us children around the Oxfordshire lanes in the back, along with Susie, a gigantic wolfhound. He would slide the glass courtesy screen up and smoke his pipe while he drove us around. A wonderful man, of astonishing largesse. He was, to a 10 year old boy, everything a godfather should be, discreetly handing me fivers and tenners, while holding up a conspiratorial hushing don’t-let-on-to-your-father finger to his mouth. This was in the late 60s when a fiver was an unimaginably large sum of money. Especially for a 10-year-old. Regular beatings by the bully boys in the playground swiftly taught me that the details of such received patrimony should not be disclosed especially in front of the Martin twins, brutal thugs in the Crabbe and Goyle mould, always happy to divest you of your lunch money.

So I saw cars differently. For me, the smell of oil and brake fluid was infinitely less appealing than the scent of lavender leather polish and the beeswax rubbed in to those acres of maple and burr walnut that comprised the trim of the Roller. Even at 64, I still delude myself into thinking that one day I will own, perhaps not a Rolls-Royce but a large limousine. A car that spans postcodes, a car that harks of pre-climate aware motoring. So here’s a bit of fun – if you have read this far, tell me what car you think I would most enjoy and perhaps what car you think I should drive.

During my long relationship with Parkinson’s, that malevolent little toad of a syndrome, I have had many conversations with many people coming at the condition from very different angles.

Last night, around 2:30 I found myself wide awake and unable to sleep. The great thing about the PD community as a whole is that somebody somewhere is always awake and often happy to talk.

Last night was no different. I looked down the list of Messenger contacts, noting those with their green dot visible and thus at least alive and potentially available. After a few cautious pre-flight checks (it’s always worth checking their time zone before pressing the call button. When Randy Schekman was told he had won the 2013 Nobel Prize for medicine, the call from Stockholm, made at 10 AM local time in Sweden, was received by Prof Schekman in a state of sartorial disarray. It was 5 AM in New York.

I don’t think I shall ever properly forget the sight of Prof Schekman, wild-eyed, and discombobulated in his Y fronts and string vest. I think it’s fair to say that some images should never be shared. Captain Underpants he may be but the display of his various underclothing elements (of which there were few) to the wider academic and patient communities cannot have been a positive incentivisation of youngsters towards science.

Anyway, enough said. My chosen interlocutor last night was Wayne Gilbert, English professor, poet, and gentleman. Despite our similarities in thinking on so many issues, we had rarely previously talked and certainly not one-to-one, mano a mano so to speak. There is a particular joy when talking to a man of similar age, complementary experience and outlook. We both adore the English language and its almost infinite capacity for nuance and subtlety. The pressing twilight of our years also bathes our thinking – we talk in realities and possibilities, not fantasies and hyperbole.

I’m not going to expand our thoughts here until we have crystallised them a little more clearly into their final form or at least a step further in the progression. We are oiling arthritic cogwheels first.

It’s time to tackle some taboos. Not in a brush-it-under-the-carpet route to invisibility but in an adult (i.e. grown-up) way of avoiding knee-jerk thinking. Anyway I hope I’ve whetted your appetite. We will be back with some ideas in due course.

We also both agreed that we detested metaphors such as ‘wars’ (yes I know I come close) and ‘journeys’ for the individual and collective Parkinson’s syndrome. Let’s find better.

Two hours of chat – lots of new and useful ideas.

Not bad for two old farts!

Some books mark you. Such a book is Cider with Rosie by Laurie Lee, a paean to the Gloucestershire countryside around Slad. It is a book of almost undefinable beauty, a countryman’s book. You can smell the heat of summer, heady with blossoms and hormones. The end, if you will, of an age of innocence. Of different times and places. That painful, industrial even, transition into post-World War II Britain.

For myself, living mostly in the cradle of Harold Wilson’s of British industry, its white heat fuelled by coal, the black gold of Yorkshire, the West Country of Somerset, Wiltshire and Gloucestershire was full of magic. I, like my sister, was sent to boarding school at 13 in the earnest belief that it would turn us into gentleman and lady respectively. It taught neither the necessary skills. To this day I forget to hold doors open for ladies, to doff my hat in their presence, and so on. I was, by their standards something of a disappointment.

But growing up in the West Country taught me to distinguish the seasons, to mark their passing, their transition in buds, leaves, and the opening of flowers. It taught me their scents, nights hot with hibiscus and night scented stock. To this day, some perfumes transport me backward to those days, late summer evenings, the rusty gate squeaks of crickets in the fields.

I met my girl in the long hot summer of ’74 and I see her still, silhouetted against the sunset, beckoning me to her with curling finger. She was called – well, you didn’t really think I would give away her name did you. For me, she was Rosie Burdock, the eponymous beauty of Lee’s book, whose cider-hot kisses beneath the hay wain lyrically defined his book.

Savernake Forest, in June 1974. Lying on trampled bracken, light filtered through beech leaves, rustling in the wind. Her raven hair, hazel eyes and pale freckles, bows, buttons and fancy complicated clips and zips. As clear today as they were some nearly 50 years ago. Our lips, tingling with cider, close enough to kiss or to withdraw. Pupils dilated, black pools of lust. Time stood still.

We carved our initials inside a heart in the bark of a large beech with my penknife and held hands, swaying with the cider.

When I finished reading Laurie Lee’s book, I was inexplicably saddened. So many books give so much yet, in a way, this book took from us. It described a passage into adulthood, a path through the hedgerows and bracken. But it also closed that door behind us. Innocence lost can never be recovered.

Rosie married, but not me. Still lives in Gloucestershire I believe. We exchange Christmas cards. You can still see those initials carved in the tree in Savernake Forest. If you know where to look.

What is sport? What is the purpose of sport?

If you search for a simple definition of sport online, you will find something like this as the internet’s consensus thinking: “an activity involving physical exertion and skill in which an individual or team competes against another for entertainment.”

The Oxford definition is slightly but subtly different: “an activity involving physical exertion and skill especially (particularly in modern use) one regulated by set rules or customs in which an individual or team competes against another or others”.

The Cambridge English dictionary defines sport as: “a game, competition or activity leading physical effort and skill that is played or done according to rules for enjoyment”.

Finally Merriam-Webster offers this: “physical activity (as running or an athletic game) engaged in for pleasure or exercise”

Four definitions broadly similar with some subtle differences.

Physical exertion, effort or activity is mentioned by all four definitions and whereas my personal involvement in sport rarely extends beyond it being an activity. At no point could anybody accuse me of exertion. But physicality in some form is part of sport.

Skill is explicitly mentioned by three of four. For the general Oxbridge scholar and also the wider grubby Internet, skill is part of the definition of sport.

Thankfully Merriam-Webster comes to my rescue and allows me to still offer the illusion that I am or have been participating in sport on those long Saturday afternoons of summers past. Mind you, my children viewed it differently.

Eldest child: “where you going dad?
Myself: “Saturday afternoon, sport!”
Eldest child: “oh, okay. I thought you were just going to play cricket.”
Younger daughter: (barely able to make conversation due to laughter): “good one dad!”

Well even that makes no matter Merriam-Webster allows me to engage in sport for pleasure even at the expense of ridicule by my children. Interestingly the idea of pleasure or enjoyment is only mentioned by two of the definitions. In each case presumably, but not explicitly, for the person engaged in the sport. Only one definition mentions entertainment, thereby touching on how one might define entertainment. For instance, one of those interminable Boycott innings, hour upon hour of grim self-denial, whilst indubitably a source of pleasure to Sir Geoff, failed to press the same buttons for the spectators.

But at least there were spectators. Let me just briefly take a wander down memory lane to those halcyon days in the Bells Yew Green 4th XI. Even in our heyday we rarely attracted significant numbers of spectators. A typical Saturday afternoon might maybe six or seven masochists. Usually two would be the parents of our latest fast bowling adolescent debutant. Sometimes not even his parents were that interested. Of the remaining five, one would be roped in to score, another might bring out these check that the tea was indeed arriving before our innings came to an end. Two were handing out pictures of Benny the fox terrier who had absconded a week earlier. The last spectator having realised that he was watching the wrong team, quickly departed.

Returning to our definitions, especially the bit about physical activity, it begins to look bleak for say darts, snooker, chess even. Whilst these pastimes are or can be competitive, I think one would struggle to suggest that the five pace walk to the oche constituted exertion. The same applies to the occasional shift from one buttock to the other, barely enough to raise the heart rate in a game of chess.

Okay, this is all a bit of a roundabout way of getting to the point of what I want to say. I have been watching the Ashes. From behind the sofa obviously, such is the inequality of ability between the two sides. And at the risk of being simply an armchair spectator and pontificating accordingly, I can’t help but feel that the England team is going to be royally stuffed. This pains me, not through any misplaced cricket-as-a-proxy-for-war jingoistic nonsense but simply because it devalues the game. Nobody enjoys watching a whitewash (well, apart from Australians obviously). The 2005 Ashes was the greatest series ever played because it was competitive to the very end. It was fabulously entertaining. It introduced a whole generation of new youngsters to cricket. And that wasn’t simply in England but also in Australia (although they probably needed less introducing to the game than the average English child brought up in schools which have no playing fields or facilities and where cricket is seen as an old man’s pastime. Well, by my kids anyway.

Don’t get me wrong. I don’t think it falls to the Australians to field weaker sides and thereby make more of a game of it all. I think we need somehow to put together a better team. No don’t ask me how – I really am not the person to be putting forward ideas there.

But just a final point. Saturday afternoon cricket at my level (a roundabout amoeba, slightly above bacterium) is a genial, and enjoyable experience. Yes of course you will always get the occasional hothead fast bowler who takes pleasure in maiming the kids in our team. But, these prats aside, it’s a wonderful afternoon. I have hardly ever heard sledging of opponents (maybe we just couldn’t cut come up with any that were funny). But I do wish it did not feature in the international game. I have always felt that sledging is mistakenly seen as an aggressive act, one of hostility. I see it differently. I see sledging by bowlers as being an expression of frustration. It is in essence a way of the bowler saying “I’m not good enough to get you out without trying to distract you.”

https://youtu.be/dB09d4ntKSk

Do we really want to play cricket like this? Do we want to watch cricket like this? Steve Waugh used to talk about mental disintegration. His cynical on field enquiries about the health and well-being of Graham Thorpe’s wife and children at the demise of his marriage was repulsive by any standard. To my mind, that is cheating just as much as taking bottle caps to the ball. Still can’t work out why David Warner is still a test cricketer. Same goes for Stephen Smith. They’ve let themselves down. And what really irks me is that if they had been punished appropriately in my view (life ban) they would have deprived me of seeing two fabulous batsmen and their careers. Instead we still have this ridiculous brushing under the carpet, this reluctance to tackle it head-on. And understand this. Australian cricketers are by no means the only offenders. I seem to remember from the dark recesses of time other countries players in similar situations. And I include England. Let’s be clear that.

Cricket is a glorious, fabulous throwback to another time. I wish we produced a better team. I wished we gave the Australians a more competitive series. And, let’s not forget that the definition of sport involves entertainment. It’s a game -remember?

I would like to say that I played rugby at school. Technically speaking I did in the sense that, during games, we sometimes as a class played rugby and it was not unknown for me to be on the same pitch. And there all similarity ends. When positions were being decided I invariably volunteered to play wing. Not because I was especially fast or particularly elusive but simply in order to avoid any likelihood of having to handle the ball.

Most play developed in this fashion. After what seemed like minutes of Neanderthal grunt, the ball would unexpectedly emerge at the back of the scrum. Assuming the number eight failed to gather it cleanly, he would typically be engulfed by the opponents. More stalemate – rucks, mauls and God knows what else. Sometimes the opponents got the ball. On rare occasions the scrum-half managed to retrieve it and, faced with the opposition pack approaching at speed, he would hurl it in the general direction of the fly half. At that point either the flyhalf caught the ball and it would be declared a forward (and therefore illegal) pass or, infinitely more likely, he would drop it. More mauling mayhem and the crumpled body of the flyhalf would be revealed, entombed in mud.

Basically, the chances of the ball being handled cleanly, passed accurately and conveyed in a fluid manner as far as the wing were essentially one divided by Avogadro’s number. In other words, zero. Most games went by without incident (and by incident I mean any contact with the ball at all). Sometimes entire terms.

But very very occasionally, about as frequently as solar eclipses, the ball would make its way to me if, for instance I had been foolish enough to follow play by jogging along the touchline.

Desperate situations call for desperate responses. Finding myself in such an invidious position, I had a simple solution. Take once sharp step to the right and hoof the ball in the general direction of the posts. Oh, and simultaneously fall over.

The use of the boot had two facets deserving commendation. Firstly, if the ball landed anywhere upfield at all I looked like a tactical genius, a rugby visionary if you will. Secondly, it enabled you to land a misplaced boot directly into the testicles of the opposing flankers. “Sorry. Accident.” one might shout over the screaming vomiting figure on the ground struggling to breathe.

If you are lucky, you would be sent off, and therefore able to drain all hot water having a shower.

Some 30 years after I had last played rugby, my son found himself on the rugby field at his school (Judd). Many of the young lads there had already played rugby at their prep schools. But my son had gone to… a state school. His exercise exploits had been largely kickabout football in the playground rather than rugby football played on the acresof lush green sward afforded them by the private school system.

“Any advice, dad?” He asked me on the day of his first rugby game. I had much advice but little time. Complexities of the game, nuances of play could wait for another day. Keep it simple I thought.

“Yes” I said. “Stay clear of anybody with a number below 8”.

Okay listen up as they say in America. It’s time for a few home truths about Covid, vaccination, boosters and so on. If you are one of the majority of people who has been fully vaccinated against Covid and who have had or are intending to have the booster, you need read no further. The chances are high that you will be okay when omicron sweeps through Britain in the middle of January. You may get some illness, you may even be fairly unwell but the chances are high that you will live to tell the tale.

Omicron, from what we know at present, is much more infectious even than the Delta version, currently Top of the Pops in the UK (but not for long). Recent calculations from the London School Of Hygiene and Tropical Medicine suggests a strong infection wave in about three weeks time. Omicron will become the new chart topper.

But it’s less dangerous I hear you say. Well yes, on the face of it that seems to be true and herein lies the heart of the problem. Although, in the less vulnerable age groups it appears to be less lethal, that doesn’t seem to be the case in old or more vulnerable groups. The little blighter seems to be just about as bad.

So what can we do?. Well it’s boring but our main weapons against omicron are scrupulous hygiene and facemasks. Incidentally you are better off getting the N95 type facemask which not only protects others from you but also protects you from others. You will notice that this is the type mostly worn by health service workers.

Facemasks aside, the principal weapon is of course vaccination which is effective in the vast majority of cases. How do we know this? Simple. Look at the hospital wards. And look around you. Around you, most people are vaccinated. In the hospital wards, on respirators, most people are not vaccinated.

So you get it, right? You understand that vaccination will save your life. Good.

Sadly, there are some people who still believe that mass vaccination, in some way, is to be avoided. They believe that they have an unalienable right to refuse vaccination. The reasons are many. There are some who don’t like the government’s and believe vaccination to be an instrument of their subjugation. Well I’m not too crazy about the present administration either but I am at least able to put my reservations to one side in favour of the greater good. Others object on the grounds that vaccination infringes their civil liberties or human rights or whatever. Well, so does death. When it comes to infringing your human rights, death has got this one nailed.

Then, and I can’t really believe that I’m wasting words answering this, there are some who believe the vaccine is full of tiny robots which will turn you into a zombie or something worse – Conservative cabinet minister perhaps? If you believe this, you really need to step back from those science fiction comics.

So let’s look at the consequences of refusing to be vaccinated. First of all, how about you? Refusing to be vaccinated or, worse still, being too dense even to book an appointment, makes you far more likely to be hospitalised if you catch omicron. And let’s not forget it’s doing its very best to catch you.

Maybe you have a fear of needles? Not a great fan of sharp jabs myself. But nor am I a fan of respirator tubes being thrust down my throat in a desperate attempt to save my life. So if you’re afraid of a little prick what does that make you?

Refusing to have the vaccine just simply makes you stupid.

And if that was all it was, you shrug your shoulders. But the real problem is not for you but others. As a general rule, viruses cannot exist in vaccinated people. However if there are sufficient unvaccinated people, this provides a reservoir of infection which can spread the virus effectively. So, by refusing to be vaccinated you are not only risking your own life, you are risking that of others, particularly the elderly and vulnerable. Because of your actions, other people may die. I can’t spell it out any clearer than that. As I said, refusing to have the vaccine makes you stupid. It also makes you selfish. Your actions harm other people. Think of that nurse who manages to save your life before becoming infected by you, passing it on to her mum and dad.

So not only are you stupid, you are also selfish. If you are vaccinated, you are part of the solution. If you are not, you are part of the problem.

Much of the talk among the scientific and medical communities centres on expectation management in DBS. What does that mean? I think it means more than anything keeping one’s feet on the ground. It’s very easy to believe when you listen to others who have had DBS that this is a cure. It isn’t and let’s be quite clear on that point. DBS will ameliorate some mainly motor symptoms to a degree that depends on where you are within that window.

Window? Yes, window. DBS is not universally helpful. If you are at too early stage in your Parkinson’s, you may not experience real benefit. If your symptoms are largely minor, you may not derive full value from DBS. Conversely, if your symptoms are well advanced and severe, again there may be too little functionality remaining to be improved by DBS. You need to be somewhere in that window – not too soon, not too late, not too trivial, not too severe. It takes the skill of a talented neurologist to assess your position within this window of opportunity. Some are not even offered DBS and leave the physician’s office fed up. Others are sometimes offered DBS unexpectedly, flapping about like fresh halibut over a choice they had not previously considered.

My initial assessment for DBS took place some while back and I was pleased to be found suitable. Then somebody sneezed in eastern China and the world changed. I’m treading carefully here. Some 150,000 people in this country lost their lives so I am a little wary of complaining here, against that backdrop. But the long and the short of it all is that by the time my number came up, more than a year had been lost to Old Father Time and I was beginning to see that window closing.

This is a bit of a roundabout way of saying that my expectations of the procedure were relatively low. I did not expect to be cured or to experience anything like a cure. Younger friends of mine who had taken the electric journey had spoken of liberation from the daily tyranny of drugs. All very exciting.

But I’m a man in my seventh decade and have learnt that life can be a bit of a disappointment at times. So my expectations were perhaps modest, in many ways mitigating loss rather than emphasising gain. When asked explicitly what my expectations were I must have left the surgeon wondering why I was bothering. I wanted to have less tremor, and a bit more sleep. But top of my wish list was to not lose my voice or slur it to the point of unintelligibility. I rely on voice recognition software to communicate with the world. I hardly ever type anything these days. And reading my handwriting is a challenge of Herculean magnitude. So if the computer cannot understand me I am in a little bit of a pickle. Because I still think I have lots to say. Many of you, particularly my children, may see it differently.

I had the operation a little over three weeks ago. So by now brain swelling will have diminished and the electrodes should be in their allotted locations stimulating away happily. In other words, any effects I see now should be representative of the general pattern. I should add at this point that we are using stimulations that amount to less than 20% of the total deliverable current.

So first things first. Does the computer still understand me? The answer is a strong affirmative and one which has largely caught me by surprise. Since coming out of hospital my speech has been clear and unambiguous. Not only that but the volume has been higher. Friends briefed to expect a slurred stumbling Jon have largely found the opposite. Most have commented favourably on the clarity of my speech compared with the mumbling that passed for speech in my pre-DBS days. Loud and clear is now the order of the day! Victory for the electricity.

What else? Sleep – I have now been home from the hospital for 16 days, sufficient duration to begin to draw some conclusions about the effect of DBS on sleep. This too has surprised me. As those who have read this column over the last few years are aware, I sleep very poorly, scraping together fragments of sleep where I can. Not now. I’m reluctant rather to talk about it for fear of jinxing its salutary effects. But nonetheless I seem to be sleeping at least an hour a night longer than I have previously. Even when broken I find it easy to go back to sleep. For insomniacs like myself this is uncharted water. And I love it. Two out of two for those happy little electrons.

Tremor? I’m saving the best till last. Picture the scene – I covered it in my first ever book about living with PD (“Slice of Life”) – . Grated Parmesan. Give me 30 seconds and I can turn a plate of spaghetti into a winter nativity scene. A bowl of soup becomes The Poseidon Adventure. And so on. Holding a teacup has the floor awash with Darjeeling within a second or two.

Not any more. My hands are rocksteady. I would probably even pass a lie detector test this. They move when I command them but not otherwise. And this means more than simply targeting an espresso to one’s mouth instead of face. I know tremor will one day return at some point long in the future I hope but for the moment I’m happy to wish it bon voyage. This newfound stability has of course robbed me of one of my little party tricks but this is a small price to pay.

Teacups are just part of it. If my hands are steady, I can read a book. And if I can read a book, I can read articles, commentaries, even my own books (and I’m ashamed to say that I do sometimes do exactly that). It has been more than five years since I was last able to hold reading matter steady enough that I could make sense of it. That’s a long time. I have so much catching up to do.

It’s not just reading. One of my passions is photography. For many years I have taken blurred, distorted images, like ghosts in the mist. Even compromising with laughable film speeds, clumsy camera grips, releases and tripods, the results have been pitiful. But not any more. My new steady hands are probably, and here’s the funny bit, better than they were before I was diagnosed. Of course, now that I can take crystal-clear, razor-sharp photographs I’m beginning to miss the misty ghosts. And there’s no excuse now. People used to make allowances for my rubbish photographs. Now there is no hiding. The whole world will know that I am crap at photography.

If we are talking still about expectation management, how can I fail to be happy. I said, going in, that these were what I hoped for. And I feel that the Christmas fairy has granted all three of my Christmas wishes.

Okay, this is out of sequence but I thought I would tell you roughly what I remember of the surgery for DBS. I don’t know whether you will find this reassuring or unsettling so I will throw in the usual scattering of caveats – if you don’t want to know the score look away now.

We are four in the ward. Adjacent to me is Mark, who has Multiple Sclerosis incidentally but, more specifically, has had a brain tumour removed. A gentle mild man with kindness and generosity of spirit where you might have expected him to rail against the injustice of life. A model patient. Not surprisingly the physiotherapists love him. Whatever they ask of him, he does. Determined to make progress and almost infinitely courageous. I salute him. Diagonally opposite me is Terry. An engineer by training, he has had DBS surgery exactly a week before me. I watch him closely for signs of improvement – a bit like skipping ahead in a novel. Lastly there is Joshua, a Nigerian with a tendency to grumpiness. When I discover that he has a spinal tumour which gives him almost constant pain, I try to be a little more accommodating. It turns out that he is also a painter (artist not decorator) and has painted some very stylish African scenes. Nor is he the only artist amongst us. Terry is a wood turner and makes beautiful bowls from maple, pear, ash. I make a mental note to speak to him in more detail. [I have since purchased a rather beautiful 18″ bowl in maple].

Surgery day begins at midnight when they withdraw all fluids. Not a major hardship except for the fact that hospital wards are, in my experience, rather overheated so your lips tend to dry out I am told. Speaking as someone whose skincare regime is, to say the least, cursory, I am unaccustomed to applying lip balms and so on.

I sleep poorly anyway and obviously the anxiety of impending surgery contributes to that. I finally fall asleep around four only to be woken by one of the nurses trying unsuccessfully to insert me into a pair of flight stockings. At some 84 kg (me not her), this is never going to happen. She summons Kingsley, a strong Kenyan this who completes the task with a flourish. I head to the shower to complete my ablutions, consisting of Hibiscrub top to bottom. Literally.

I can see the tagline – “Hibiscrub, because I’m worth it”.

A little after 8 o’clock the porter arrives to take me down for my operation. He chats briefly with the ward staff, even going so far as explaining the minutiae of my upcoming procedure. He seems very knowledgeable about modern neurosurgical practice. It finally dawns on me that he is not a porter but, in fact, the professor of neurosurgery. “Yes” says one of his registrars “he likes to pretend”.

In a strange sort of way it is reassuring. We chat at ease for several minutes. It turns out that he trained with Prof Peter Richardson who had the office four doors along from me when I worked in the anaesthetics department at “the London”. Small world. For those who would like to meet him, this is my neurosurgeon, doing a TED talk.

https://youtu.be/qqH2a3BcAFI

For those of you unfamiliar with a neurosurgical operating theatre (and I hope that’s most of you), the first thing that impresses you is the sheer number of people. About as many as would crew a Flying Fortress. It’s all bustle. I seem to remember around ten people busying themselves with pre-flight checks so to speak.

Brief introductions – I will never remember their names – and smiles. “I will just get into my pyjamas and we’ll get going” says Prof Z. Funny, I use theatre scrubs as pyjamas at home too.

It is one of the most dislocating aspects of general anaesthesia that one has no sense of the passage of time. I remember the anaesthetist implanting an arterial line because “Parkinson’s patients have autonomic instability and notoriously variable blood pressure”. My next recollection is of a nurse gently whispering sweet nothings to me in recovery. I reach up to my head and feel hair rather than stitches. Obviously they have shelved the procedure because of some as yet undisclosed problem. They have not even shaved me.

The nurse tells me sharply to leave the staples alone. I am confused. No time has passed yet the clock in theatre shows 4 PM. I have lost some eight hours along the way.

A porter takes me back to the ward. Evidently Prof Z has come through his career crisis and decided he prefers to be a neurosurgeon after all.

I remember making some feeble efforts to telephone the family but cannot even remember how to unlock the phone, so groggy am I. I probably make no sense at all… Don’t say it!

Just then the dinner trolley arrives. I struggle to remember what I have requested. Not that it would have mattered. Hospitals are not known for their catering and one beige slurry is much the same as any other. Many believe that hospital catering is there to discourage long-term bed occupancy. And in that role, it performs admirably.

By Friday I am much improved. As are my other fellow inmates. Sorry, patients. In one fell swoop, they are all discharged leaving me alone over the weekend.

This turns out to be one of the stranger experiences – a little like being in a holiday camp out of season. My table is piled high with newspapers and magazines. The Observer, the Guardian, the daily Mirror, and others. More reading than I can possibly need. Their choice of reading matter seems pointed. Time Out (particularly ironic since I cannot spend any time out, National Geographic Traveler (as if they hadn’t made their point already) and finally Countryside magazine (all of which is beginning to look deliberate).

Queen Square is deserted at the weekend. The usual bustle of taxis and ambulances is quiet. Like a ghost town. Obviously I failed to notice the zombie apocalypse.

By Monday I have negotiated my parole (sorry I mean discharge) and I am released into the tender mercies of Joe, the taxi driver to take me home. A man of few words but a penchant for speed and evidently in the process of making what appears to be an attempt on the world land speed record for a Mondeo. And to think that I was afraid of the surgery!

Around this time next week, if all goes well, I will have two electrodes implanted deep within my brain, positioned stereotactically into the subthalamic nucleus. One on each side. I’ve outlined other possibilities in previous blogs but now is the time to put those transient fears and largely unfounded misgivings to one side. Now is the time to focus on success, to clear my head of negatives. Like Owen Farrell lining up a penalty, his eyes burning with intensity as the visualises the path of the ball over the bar. It is my time to be a Zen master, to blot out all unwanted thoughts and to channel my energies into visualising that success.

So with that in mind, this will be the last blog before surgery next week. The last staging post before those broad sunlit uplands I’ve been promised. So let me.a few ‘i’s and cross a few ‘t’s.

My letters are written. And placed where they will be found if needed. And that in itself has been cathartic, a chance to put on paper my feelings and beliefs in my own words rather than in the clichés where sentiment normally skulks.

I’ve been asked many questions over the last few weeks. Some trivial, housekeeping almost, others almost philosophical. Let me answer some.

Am I afraid? That’s an easy question to answer but not one that can be nuanced easily. Yes I have some fear. I worked for many years in the anaesthetics department of one of the London hospitals so I know well enough how badly things can go when circumstances turn against you. But I also know that we do not celebrate the routine. The vast majority of successful procedures make no headlines. And the vast majority of procedures are successful. So am I afraid? I will probably have butterflies but I hope that’s as far as it goes.

Am I prepared? There are two ways of answering this. In the simple, pragmatic assessment – have I packed my toothbrush, razor et cetera – the answer is no. I’m still thinking of things each day that I might want and need in hospital. In the normal run of things one could ask friends and relatives to bring anything I’d forgotten. But in these current coronavirus times, visitors are forbidden. In any case my surgery is not taking place in my hometown. So visitors would be few anyway.

Am I mentally prepared then? I’ve had a lot of time to think about the future and what to expect. I’ve addressed all the possibilities, all the potential outcomes and consequences. Yes, I believe I am mentally prepared for the post DBS period. I don’t kid myself for one second that it will be plain sailing. I have seen enough of the inside of hospitals over the last several years to know that you are not left alone for very long. There are always assessments to be made, measurements to take, questions to answer. An endless parade of nurses, surgeons, anaesthetists, neurologists, phlebotomists, physiotherapists, psychologists, psychiatrists and who knows what else crowds around you. And medical students as well. and let’s not forget Gladys, who brings you that first cup of tea in the morning.

Why did I choose DBS? I don’t know that I really did choose it as such. In a way it chose me. I’ve had the condition 15 years and, for the most part the drugs been effective. As each year has passed, the doses have been increased, that mental accelerator pedal pressed a little bit harder, the brain running a little faster. You cannot achieve benefit without significant side-effects – you freeze, glued to the spot, when you want to move. And you thrash, arms windmill-flailing, when you need to be still. Eventually you reach that terrible point where you cannot walk without gyrating, grimacing and groaning. And by then you know it – you’ve run out of road. So you don’t really choose DBS. Eventually it’s your only real option.

Yes there are other experimental treatments. Let us not forget that DBS itself was considered experimental until as little as a decade ago. And to reiterate my oft repeated mantra “there has never been a better time to have Parkinson’s”. Treatments now are better than they were five years ago. In five years from now they will be better still. Neuronal growth factors, injected directly into the brain, although short on proof, have strong supporters and may yet, in one form another, prove successful. Neuroprotective agents may buy more time, delaying the point where you realise you’re out of road. Surgery by ultrasound or by gamma knife may replace the good old-fashioned scalpel and saw. This could even be the last generation of conventional DBS, with electrodes connected to wires and thence to batteries. In the future there may be other ways of tickling neurones. But for now, this is the best we have. So I’ll take that.

Am I excited? Yes, in a way I am. And I’m aware that the feeling is probably inappropriate. I want the operation to be over with. Somehow I see that as the endpoint whereas it is of course the beginning not the end. The end perhaps in as much as a goodbye to my previous shaking, stumbling self. But really the beginning of what I hope will be a better life.

Funnily enough I have been thinking a lot recently about Apollo 8, the first mission to go round the moon and return safely to earth. The mission control team had done all the calculations. They knew that the capsule would successfully enter lunar orbit and that it would re-emerge from the far side. Still, there was 30 minutes in which there was no communication from the spaceship and no way of knowing if it had been successful. A period of anxiety perhaps until Apollo 8 emerged from the far side to a mission control, shrieking and shouting with joy.

Just the same here. Wish me luck and I’ll see you on the other side.