Jon Stamford

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.

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!

I had a phone call yesterday afternoon. The usual thing – number withheld. Not normally the kind of phone call I would answer. Mostly nuisance calls, people trying to sell me insurance, invitations to timeshare evenings, free valuations of property and the usual get rich quick schemes. Experience has taught me not to answer these calls. The vast majority leave no message.

But for some reason I can’t put a finger on, I decided to answer this one. A soft-spoken Welsh voice asked for me by name, explained who he was in a manner credible to me and asked a couple of legitimate security questions.

He explained that they had received my letter of a few weeks ago outlining my concerns over their decision-making process, acknowledged the validity of my arguments and had chosen to reverse their original decision. A couple of letters would follow within a few days to confirm what he had said by phone. I thanked him politely and he reciprocated, thanking me for my understanding.

Who was it? The DVLA.

And the decision? To rescind their original revocation of my driving licence and to reinstate the aforementioned.

I have always felt that there is virtue in civility when writing letters of complaint. When the DVLA had originally revoked my driving licence I chose, rather than write a long tirade of angry impotent bluster, to present my arguments politely but firmly, inviting them to think again, to reflect upon what I felt was too hasty a decision.
In essence I asked them, in the general tenor if not explicitly the same language of Oliver Cromwell:-

“I beseech you, in the bowels of Christ, think it possible you may be mistaken”.

I didn’t actually use Cromwell’s words but the sentiment was there.

And as I said, he thanked me for my understanding. “Most people just rant and rage at us” he said.

“I can imagine” I said.

Manners … Maketh … Man.

For months now we’ve been told that 19 August will be “Freedom Day”, the symbolic lifting of most if not all pandemic-induced restrictions. Indeed, so imprinted on the national psyche has this date become that its preeminence overcomes all reason. We will apparently reopen for business/leisure irrespective of any countermandering considerations. Apparently so strong is the government’s faith in vaccination that its collective myopia towards the more stark statistics holds sway.

Apparently the UK is now a safe place to visit and live. You need have no fear of coronavirus infection here. This is the message coming loud and clear from the Prime Minister and his apparatchiks. The link between infection and hospitalisation is broken. All is well.

If you’ll forgive me a brief profanity, that is – to use the correct scientific term – utter bollocks. The notion that one is protected completely, sealed into our own immunological bubble, by two jabs of a vaccine is a palpable nonsense. Let me give you an example – a good friend of mine held a dinner party outdoors three weeks ago for six people. All were double jabbed. All six caught Covid at that dinner party. At least one was hospitalised. So if you believe that two jabs is the route to immortality, think again.

Throughout the last several months of lockdown, the government has subtly shifted from its initial position that science was the sole determinant when lifting restrictions to its current cavalier approach in which good news trumps good science. So determined is Johnson to be able to put on his happy face that all reason has been scattered to the four winds.

Let’s examine some stark statistics. During the second wave of infection in the UK, cases peaked at around 75,000 per day. Current rate of infection is around 25,000 cases per day. If it follows the previous wave (and there is a evidence to support the view that it will be faster, being the Delta variant, then we will hit 75,000 cases a day around early September. And there is reasonable evidence that it will exceed 75,000 cases a day by significant margin shortly thereafter.

Now I’m just a jaded old scientist – I’ve seen it all before – but the disconnect between political pragmatism and pandemic proportions has never been more striking than at present. All the science tells us not to lift the lockdown. But the need for good news apparently trumps all reason.

But perhaps the most remarkable sight of all was the presence of Chris Whitty and Sir Patrick Vallance apparently toeing the political line. Shame on you, gentlemen. We were relying on you to drive a juggernaut of logic through the vanities of government policy. Sadly, you seem to put your duty to public health in the wrong hands.

So where do we stand? About 15 months ago I remember hearing Boris Johnson thinking aloud and, briefly flirting with the idea of a “take the hit” strategy. In essence herd immunity. It’s hard to believe that more than a year later he is in essence asking the same question again.

The idea of such a strategy being adopted in the presence of this new hyper- infective variant gives me chills. Yesterday there were 400 hospitalisations for Covid. If the government’s own projection is accurate, the health service will be swamped within a month. And probably worse than during the second wave. That’s the reality.

“Dictated by data not dates” said Boris. Yeah, whatever happened to that idea?

Since 15 February 1998, the skyline approaching Gateshead has been dominated by a gigantic semi-abstract sculpture, 20 m tall and 54 m wide, overlooking the A1 as you approach from the south. Like the Colossus of Rhodes, standing over the road. You can’t miss it.

I have always been impressed by The Angel of the North. It seems to me to be the kind of civic artistic/engineering project that rarely finds funding. We are, at civic level, a rather peevish nation disinclined to pump money into large public gestures. The French think nothing of placing glass pyramids outside the Louvre. The Germans are happy to see the Reichstag wrapped in fabric. But in Britain? Surely not. So it took some fairly visionary thinking (in UK terms anyway) to see this project through to completion. There were objections all the way with arguments ranging from the ideological – it looks like a Nazi sculpture to some – to woollier counters that it would cause car crashes on the A1 or even, most risible of all, interfere with TV reception. Even its creator, Antony Gormley, was disparaging, at one point dismissing it as “motorway art”. I’m surprised it hasn’t been called to account for the coronavirus outbreak.

Objections have largely faded away since the plans became architecture. What looks deceptively simple on paper, banal even, is lent an undoubted presence by its sheer scale. What seems enormous from the road is positively gigantic when approached on foot, its presence and dominance unquestionable. This is no “blight on the landscape”, no “carbuncle on the face of the earth”. This is a masterpiece, plain and simple.

But what does the Angel say? I have seen countless pictures of the Angel of the North, driven past it by car and train but, only last week, did I approach the statue on foot. And to do so is to be drawn in to another layer in the onion of its meaning.

I know what you’re thinking. “Jon’s lost it”.

I don’t think so, well not over this at least. Ask yourself this question – what is this statue saying? Personally I think the posture of the statue is ambiguous and deliberately so. It’s gesture, arms/wings outstretched can be interpreted many ways. Are the arms and wings a single structure – in other words does it have a pair of wing arms or are they separate, arms tightly by the sides, wings outstretched. Arms, even vestigial arms, held firmly to attention suggest a subservient response to authority. The wings then might be seen as in conflict, spread in silent opposition to that same authority.

Does the statue stand in defiance of the perfidious South? Are the outstretched arms blocking access to the North to the southerners? Do they speak loudly and say “you shall not pass” in recognition of centuries of economic exploitation by Westminster?

Are the outstretched wings a display, like those of tropical birds, a gesture of potential, inviting interest as potential suitor? An invitation rather than a repudiation?

Are the wings meant to symbolise some union between earth and sky? Gormley talks of connections with the ground and the mines in the region, perhaps alluding to the transmogrification of coal into air by burning.

Who knows? And ultimately, who cares?

For many locals, it still known as the Gateshead flasher.

First introduced by McVitie and Price in 1927, the Jaffa cake is nominally 54 mm in diameter and consists of a layer of sponge, then orange jelly, topped with plain chocolate. A beautiful marriage of three components into the very apotheosis of snack confectionery.

I don’t plan to become embroiled in the ‘is-it-a-biscuit-or-a-cake’ debate so let’s put that one to bed immediately. It’s simple really. Ask yourself this question: what happens to a biscuit when left out for a few days? Now what happens to a cake under the same unfortunate circumstances? And the final part of this baking invigilation – what happens to the Jaffa cake?

If you have answered those questions honestly you are led to a single inescapable conclusion. Biscuits become soggy, cakes dry out. And what does the Jaffa cake do? That’s right, it dries out. It is therefore a cake not a biscuit. Point proven. We’ll hear no more.

In any case there is a clue in the name.

And as if that wasn’t enough, the Jaffa cake is legally a cake not a biscuit. In 1991 a VAT tribunal ruled that it was a cake, vindicating McVities’s submission. Lest you think this to be frivolous legislation, be aware that biscuits and cakes are taxed differently in the UK. It was a matter of some financial import that the Jaffa cake be assigned correctly and could finally come out of the closet as a cake after years of living a lie.

Experts were called and duly gave evidence. McVities submitted that the product’s texture was that of a cake. The Crown countered that the Jaffa cake was the size of a biscuit and therefore conceptually one. McVities drew attention to the name of the product. Unbowed, the Crown contended that Jaffa cakes were typically sold alongside biscuits not among the cakes. McVities fought back, arguing that the product’s major constituent was sponge not biscuit. The Crown responded that they were eaten with fingers like a biscuit. A long and bloody legal tussle, taking the machinations of a fine legal mind in Mr Donald Potter QC to finally adjudicate in favour of McVities and their cake case and make his ruling accordingly.

The biscuit movement was trounced, sent packing to lick their wounds. Don’t get me wrong – biscuits are part of the cultural heritage of the UK. Who would wish to be without such delights as the jammy dodger, the chocolate hobnob, the ginger nut, even – dare I say it – the mighty custard cream. Fine products all, proud flagbearers of the biscuit tradition. One might even, to placate our colonial cousins, grudgingly concede a place to the Oreo cookie in the biscuit pantheon. All of which cookie controversy, bakery ballyhoo and general stuff and nonsense is irrelevant here. Because the Jaffa cake is a cake.

And a prize-winning cake at that. In 2012 the Jaffa cake was top of the pile, winner of that most coveted of crowns the “bestselling cake or biscuit in the UK”. As a long-term advocate of the little orangey blighters, it was like watching your own child’s graduation and acknowledging, with expanding midriff, one’s own role in that retail triumph.

The nation loves Jaffa cakes. In fact the scale of manufacture is breathtaking. A production line 1.6 km in length (that’s a mile to us old traditionalists) winds its way through a factory covering an acre round-the-clock to satisfy the country’s sweet tooth.

For such a magnificent exemplar of the baker’s art, it is astonishing that McVities never registered “Jaffa cakes” as a trademark. Leaving aside what must have been a serious financial miscalculation, one cannot ignore the extent to which cheaper supermarket imitations have besmirched this noble brand. Waitrose Jaffa cakes are one thing but can you imagine the Jaffa cake in the hands of Aldi? It’s like passing the port to the right at a regimental dinner. You just don’t do it.

I am ambivalent about Jaffa cake variants. On the one hand I’m a traditionalist but at the same time I like to reward endeavour. We should probably gloss over whether something flavoured with a fruit other than orange can truly bring honour to a product with the word Jaffa in its name. Nonetheless, the above nominal infelicities notwithstanding, McVities make limited editions from time to time with pineapple, lemon and lime, strawberry and blackcurrant flavours. I have seen generic Jaffa cakes with raspberry filling and even black cherry versions finished with white chocolate. This year McVities have even released passionfruit Jaffa cakes! The company seems determined to span the globe of flavours. Let’s hope they stop short of durian.

But of course it all bears witness to the enduring love affair between the British public and this ‘grand dame’ of teatime. To paraphrase Harold Macmillan, we’ve never had it so good. We live in a Jaffa cake golden age.

I often think of Parkinson’s as a sequence of reluctant landmarks. The day we are diagnosed and the anger, denial, grief and depression that followed. The day we start taking medication, as we accept that we cannot fight the illness alone. The day we start levodopa and take its first steps on that path to dyskinesias. The day we give up full-time employment, that most symbolic act of emasculation. The day we submit to deep brain stimulation, as we run out of viable options. The day we are registered disabled, tacitly badged as worthless, the burden never expected. The day when we are taken into care, shown to our seat in God’s waiting room. And finally the day when there are no more days.

We are taken away from ourselves by degrees, some barely noticed, others cataclysmic. And of course each of us has our own personal landmarks, each in its own way an erosion of our capabilities, a narrowing of our horizons. Each landmark gnaws at our identity, our perception of self-worth.

For me, independence is vital. I resent every encroachment upon that independence. My driving licence is up for renewal in July and, as usual, the DVLA sent me the forms to fill out. Keen to ensure that this should be no break in continuity, I quickly completed the questions and sent the forms back to Swansea. Yesterday I woke to the sound of letters falling on the doormat. There it was, my letter from the DVLA. It’s normally takes months. I was very impressed. Good I thought, one less thing to worry about. I read the rest of my mail first and finally opened the envelope with that last sip of espresso.

“Dear Dr Stamford” it began “important: you must not drive”. I put the letter down, then picked it up and read through the beginning once more.

The rest of the letter provided some details but, like that moment of diagnosis, I took little in. All that mattered was contained in the first sentence. Not that my licence would not be renewed from July. That would have been tough enough. But no, it was instantly invalidated. No period of grace. No chance to get used to the idea. No final ride. My last drive in the car I bought last October was not to be some proudly symbolic bucket list thrash around the Nurburgring. My last motoring experience amounted to little more than the previous day’s nipping out to the farm shop to buy a pint of semiskimmed. A motoring whimper.

It wasn’t how I wanted it to be. I knew that day would dawn sometime and every year that passed the day drew closer. But like a cricketer who knows when to retire, I had hoped that I would know when the moment came and I would be able to take that decision myself. Not this way stealing that tiny dignity from me. And in that moment when I read the letter’s opening sentence, my motoring life flashed before me. All the cars I had ever owned. My first car, a tomato red Fiesta, the white Golf, the blue Golf, the red Sapphire, the brown Mini, the silver Puma, the gunmetal Galaxy and of course, the Jags, how could I forget the Jags. A silver blue S-type followed by an XJ6 in the same colour. Then another Golf, a B-Max briefly and then another deep blue Puma.

There are of course worse things than losing your driving licence. People go through worse. I will adapt as everybody does. Friends have been quick to offer lifts and to suggest the merits of bus passes, taxis, ubers and so on. And I shall get round to that. I shall get up again, dust down my gloves and swing punches again. It’s not as though it’s the end of the road.

Every year we acknowledge World Parkinson’s Day/Week/Month in our own way. I deliberately eschew the words ‘celebrate’ or ‘commemorate’. Once more we draw attention to this irksome illness for the general public’s edification. We do our five-minute slots on radio and television, have our letters printed in the newspapers, run stalls at county fairs and so on. Each year we group together publicly, rattle tins and, all too transiently, prick the collective conscience, like some half-hearted freakshow. We hear the same well-meaning but flabby questions, give the same trite replies.

We remind the public that the problem hasn’t gone away. We haven’t gone away – well, actually many of us have done exactly that, our powers diminishing to that vanishing point of inaudibility. And this year of course we have had coronavirus to further entertain us as it scythes its way through the care homes.

Each year, we spend billions on research and care, we welcome thousands more to our reluctant community, attend support groups where we eat a ton of digestive biscuits, washed down with gallons of tea. We dust down our placards with the same old slogans, the same overused platitudes while we hope for some serendipitous discovery to deliver us from Parkinson’s. We proudly parade this year’s new initiative from the big charities, the latest ‘great white hope’ that will transform lives blighted by this illness. Each year we swear blood brotherhood/sisterhood, vow to stay in touch and talk about each year as the most inspirational yet. Come May, we’re out of steam and gladly put the placards away for another year.

Well it’s not good enough. I am fast coming up to 15 years with this condition and frankly I’ve had a bellyful. A bellyful of these symptoms, certainly. But a bellyful also of hollow promises, of being mollified and patronised. I’m tired of self congratulatory tokenism towards patients by people who should know better. I’m tired of ‘new initiatives’, bored with focus groups, working parties and roundtables. I want action. I want accountable action. I’m tired of research studies that merely confirm what is already known. Consolidating rather than progressing. Stale smoky inertia rather than the bracing lungfuls of momentum we were promised.

I want more. Much more than this. I don’t want to be rolled out for the benefit of the lay public, like some performing seal. I don’t want you to give me your annual radio sympathy slot for half an hour. You’re probably as bored as I am. I am tired of spin that makes a ‘breakthrough’ of every trivial finding. I’m tired of hype masquerading as hope. Do I sound cynical? Well, I’m tired of cynicism too.

Every time April comes round it seems, more viciously than ever, to be Eliot’s ‘cruellest month’, an indictment of the current unhappy state of Parkinson’s rather than a ringing endorsement of success. There is a limit to the number of people we can tell that a cure is ‘just round the corner’. It isn’t and we should make preparations accordingly.

I want to see a World Parkinson’s day/week/month where we paint the picture as it is. A period of brutal honesty not disconnected delusion. A period where hope is real not hype in disguise. A period where we strip away our vanities, recognise our failings, and stand to give account before our peers. A period where we say, with head bowed, “I didn’t do enough. I didn’t make enough of a difference”.

Yes, I mean you. I mean him, her and them. And I mean me. Above all I mean me.

For goodness sake let us try to be honest with ourselves and each other. This is an incurable neurodegenerative disease with all that entails. The sooner we embrace that uncomfortable fact, honestly and with eyes open, the sooner we can begin to make genuine progress. This isn’t Lala land. This is real. There are no unicorns.

I’ve had a bit of time to think about this. I was diagnosed with Parkinson’s, the young onset variety, in late 2006. So I’m well into my 15th year of cogitation on the matter. And if you count my research career beforehand, messing about with dopamine in the basal ganglia, you can probably add another 23 years to that. Not full-time you understand. Nobody can think about any issue with that intensity. But always simmering away somewhere at the back of the stove. Of course, having the condition myself focuses the mind wonderfully. What was previously simmering, comes to the boil quickly. There is nothing like the symptoms of Parkinson’s to help drive a sense of urgency into one’s own personal agenda even if not to the same degree to a wider caucus. An academic interest in the subject – and I hope my scientific and clinical colleagues will forgive me – doesn’t quite generate the same sense of urgency. I know – I’ve been there.

Over those 37 years, I’ve listened to, interviewed, challenged, agreed and disagreed with some of the finest thinkers on the subject. And a few klutzes as well, obviously. Useful tip: if you are speaking to people with Parkinson’s about Parkinson’s you will always be asked for your thoughts on a cure. Better have your answers ready. People with Parkinson’s expect clear thinking.

I would like to be able to say that I will present you here with clear thinking. That would probably be disingenuous or at the very least overambitious. Greater minds than I have pondered this without reaching any persuasive conclusion.

It is important above all to not allow one’s thinking to be clouded by emotion. We all want a cure. Yes we do so let’s quickly brush aside any conspiracy theory nonsense about the pharmaceutical industry’s preference for long-term treatments rather than quickfire cures. Obviously pharma is not innately philanthropic but that does not render it complicit in some global conspiracy. Let’s put that aside immediately. If you are unable to do so, well I suggest you go back to playing with those unicorns.

From day one post diagnosis, the clock is running and each day, week, month and year we register some further erosion of our abilities. Each day puts distance between our old pre-diagnosis selves and our current manifestation. By the same token each day brings that dark dot on the horizon a little bit closer, makes the heart beat a little bit quicker and renders our perceived need for a cure that tiny bit more pressing.

You might think that would drive the research programme with more force and energy. Show the scientists our raw selves and perhaps they might themselves be imbued with our urgency? You might think. Many of the best scientists do cultivate relationships with patients explicitly to understand the driving forces for people with Parkinson’s. In many respects they gain hugely from those patients in the same way that the patients feel empowered. But don’t expect the scientists to walk in the patients’ shoes. And nor should they.

The best scientists will have a deeper awareness, a more visceral grasp of the condition but always ultimately be one step removed from the full Parkinson’s experience (unless of course they contract Parkinson’s themselves – oops). We, as patients, can take them just so far along the road but no further.

And that’s the way it should be in my view. Scientists do not, in the final analysis, share our gnawing fears. And nor should they. They make decisions and interpretations in the light of cold hard numbers and statistics. Their decisions are certainly informed by their contact with patients but remain or should remain emotionally neutral. The best science is not driven by panic.

That’s a long way of saying that patient input is vital but should not cloud scientific judgement. No amount of desperation changes hard facts.

I wonder how many of us were told on diagnosis that old favourite “there will be a cure in 10 years”. The kind of glib blanket reassurance that so discredits the medical profession. The substitution of measured reason by tired platitude. Ultimately this does little but breed resentment as the 10 year mark approaches, placing a further barrier between patient and physician. To raise false hopes is every bit as damaging as crushing overoptimistic expectations. Neither help.

So what is the path to a cure? Is there one? Are we still fumbling our way through the undergrowth hoping to pick up the path? These things typically only become apparent with hindsight. We only understand the link or otherwise in 20:20 hindsight. Decisions and choices which at the time seemed capricious are rationalised as logical steps along that particular path. What was a wild stab in the dark is reconceptualised as the product of linear thought.

On the whole, science isn’t like that. But it’s difficult to budget for serendipity. Science is always willing prey to serendipity. As it should be.

What patients want to hear of course is that there is, in the pipeline, some drug or treatment that will permanently remove their symptoms. A simple definition of cure. Do I believe in such a simple definition? No, I don’t think I do. If we regard three steps as being the sequence of events towards a cure – slow, stop and reverse the pathology – we currently stand at the “slow” stage. There are reasonably plentiful indications that we can make a difference at this stage. Stopping the progression of Parkinson’s is an amplification of that. Reversal however involves a whole different sway of biochemical processes. It is not simply a reversal of neurodegeneration. It will require rebuilding the neuronal architecture as much as patching up faulty biochemistry. The paths of degeneration and regeneration are not mirror images. Regeneration will be a much tougher nut to crack.

The overwhelming problem with Parkinson’s, and a thorn in the side of every research endeavour, is the extent to which the pathology has progressed before it translates into symptomatology. We lose more than 80% of our dopaminergic neurones before we even show the slightest finger tremble. By any reckoning this is stacking the odds against us. If neurodegeneration is holding all the aces, how can we intervene and successfully expect to be able to reverse that damage?

The answer lies in biomarkers in general and early presymptomatic markers of Parkinson’s in particular. We need to know who is going to develop Parkinson’s before they do so. This is the incentive to develop drugs that will slow progress or even stop it. Let’s focus our efforts on finding those predictive markers and mass screening. I think there is every reason to hope that we can, if we catch it early enough, prevent it developing into full-blown Parkinson’s.

In other words, I think the elimination of Parkinson’s is going to come less from treatment of those already afflicted than the prevention of its occurrence. In the same way that we have eliminated conditions like smallpox not by the development of novel therapeutics but by its prevention. We will beat Parkinson’s by its prevention. Screening with reliable biomarkers, alongside the development of drugs to slow or stop progression will, over the course of a generation, eliminate Parkinson’s.

So where does this leave those already afflicted? Well certainly it’s not the solution that might be wanted but it’s fair to say that development of neuroprotective agents will benefit those already diagnosed as well as those who will be. We know so much more now about the pathway to neurodegeneration that “slow” and “stop” are parts of the usable vocabulary of Parkinson’s, not science fiction. Much has been spoken of the so-called oncoming Parkinson’s pandemic. Indubitably that will provide an impetus for research into prevention.

What of my own Parkinson’s? After all I’ve had its more than 10 years. Do I expect a cure? Truthfully, I do not expect to see a cure for myself in the course of my lifetime. Does that make me downhearted or resigned? No, it doesn’t. Because I know that the same impetus to develop neuroprotective agents in combination with a greater understanding of the presymptomatic biomarkers will benefit my generation as well. I may not live to see a cure but I will live to see benefit (touch wood). And I will know that, in whatever tiny little way, I played my part. That keeps me going.

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