Living with mediocrity 1.

I have to be honest and say that my life has not turned out quite the way I intended. Not that I necessarily intended anything in particular. I went to a school where we the pupils were given the wherewithal to succeed in life. That was all very well for the majority of pupils who had at least some kind of inkling of their futures. Nobody left school at 16. A-levels were the norm – the only question remains what one was to do with those A-levels. In many ways it mapped out neatly to three distinct career paths. The academically gifted (and no, that wasn’t me) went to Oxford or Cambridge. The second tier went to ‘other universities’, a blanket term for the remaining seats of higher education. And the final third went to Sandhurst to be trained as officers.

I’m oversimplifying of course. But to some extent the A-level years were designed to help focus one’s aspirations into one or other channel of learning. A careers master was also available to help that focusing. But bearing in mind that the careers master’s knowledge of potential careers was limited to ‘careers master’, a position he had taken up shortly after the First World War and held ever since, this was not the key to a cornucopia of possible careers. An hour in the company of the careers master dampened any enthusiasm one might have possessed. If one was mediocre, and I was mediocre with a capital M, one had the overwhelming sense of horizons shortening and opportunities diminishing. In the same way that the September 1907 entry had their opportunities cut down, quite literally, on the Somme in 1916, so did the class of 1976 find the careers master waiting for them, like the German machine guns.

My problem lay in my overwhelming ordinariness. Yes, I obtained 10 O-levels but none reflected stellar grades (except astronomy, where I achieved an A). My A-level grades were even less distinguished, amounting to little better than scrapes.

Needless to say the universities were not crying out for applicants of abject mediocrity. Par entry criteria for medical school (the only career I had even the vaguest interest in) were three As at A-level and similarly excellent O-levels. One was also expected to show evidence of extracurricular excellence. – Scrum-half for England, building bridges in remote African village communities, missionary work in Papua New Guinea. That sort of thing. Growing up in Doncaster offered little opportunity, not that I would have shown any interest anyway.

My father’s plan for me, was medicine. As it had been for him. But whereas my father was a towering intellect, training at Cambridge before going on to the Middlesex Hospital, and thence to general practice in Yorkshire, a path only punctuated by a brief period of national service in the Navy. My father was a tough act to follow this. Inevitably, rather than following my father into general practice, I found myself, come September, scraping around through UCCA clearing for some kind of degree course. Still vaguely entertaining the notion of medicine, despite all evidence to the contrary, I was offered a place to read pharmacology. When I asked my father about the course he gently pointed out that it was ‘a rather academic subject’, the inference being that I would struggle with the rigours of the course.

The first two years of the course looked like vindicating my father’s evaluation. Like most students I converted my student grant into snakebite rather than textbooks. But the third year was my lightbulb moment. Nowadays much more emphasis is placed on continuous assessment or at the very least less weight on a hellish trio of papers in June. But way back then this was not the case. My course was one in which everything rode on three written papers on successive days and one oral examination.

My particular forte was exam technique. And before you question me, there is such a thing and I was very good at it. While the other students on the course attempted to show a wide breadth of learning, I did the exact opposite, concentrating on model answers to a handful of questions. It was a gamble certainly but a calculated one.

When the results were posted, I phoned my parents, unsure of their likely reaction. This was back in the days before mobile phones. The School of pharmacy had eighty graduates that day and only one phone box. It took a while to reach the front of the queue, time enough to work out what I was to say.

My mother answered the phone, with a trembling voice.

“Hello” she said. I told her my grade.

“I will pass you over to your father” she said. There was a brief muffled conversation at the far end. Then my father answered, quoting a sketch by Bob Newhart about merchandising the Wright Brothers. This has always been a family tradition, defusing situations by laughter.

“Kittyhawk, the other day. How did it go?”

I told him my grade.

When you know somebody very well you can see their face when they speak. The influence of a smile or frown can be informative. He was struggling for words, or another Newhart quote. I don’t remember the exact words he used.

But I could tell he was smiling.

Parky Blinders

Over the years that I have been going to my regular eye test, little has changed. My left eye has been consistently more fuzzy than my right and both have gradually lost a little acuity but nothing more. Instead of the optician physically holding lens A or lens B in front of my eye after asking me to close the other, the principles are the same. This basic examination is now padded out with a variety of additional tests that you may have at your discretion. Puffs of air so gentle as to feel like the touch of a lover. Candid photographs of my retina complete the illusion. I can even have a 3D image of my retina for a mere £28 plus VAT. But what would you do with a 3D retina? Use it as a paperweight? Or as a lure to confuse fish? As Christmas tree decorations perhaps?

I can’t tell you because, being a tight Yorkshireman I decided to forego this particular wallet disembowelling. I shall never know what compelling uses were available.

As I leave the testing room I am guided subliminally through The Hall of Designer Frames while the optometrist prepares my printout prescription. It’s a bit like trying to catch a flight at Gatwick where, however pressed for time I am, I still find myself unable to escape the endless chicane of duty-free whisky, Cologne and Toblerone.

Back to the eye examination. The optician begins the examination by asking, in a rather to light manner, whether reading is important to me. I’m instantly alert wondering whether this polite enquiry is the harbinger of an optical apocalypse. Or just small talk. But it does at least guarantee him my full attention to this new direction of enquiry.

Eventually, after a gentle prod or two, the optician emerges with the prescription and the ever helpful, perhaps that should read overhelpful, sales assistants put a brave face on their inability to equip me with frames by Gucci, Lacoste, Givenchy or any other of the many giants of the optical sciences. Twenty years or so growing up in Doncaster has equipped me with all the skills I will ever need to dispatch overzealous sales peeps.

But this year is different. I have been aware for a while that my eyesight has deteriorated beyond what is typical of my age. No gentle slippage of focusing points, no mere inability to read the bottom line of letters on the charts. No, something is up. I notice quickly that the optician takes longer with each lens change, repeating anything marginal. This is new. At the end, he asks me to remain seated. He looks momentarily uneasy before slowly and clearly explaining what he has observed and deduced therefrom and what it means to me.

He then goes into the “well I have some good news and some less good” spiel. I invited him to start with the less good. Apparently I have cataracts and not just in one eye. Whereas a gentle, almost veiled clouding of the left eye had been the previous test result, the right eye is now much the more concerning.

So extensive is the cloudiness of both sides that, he is pleased to tell me, they are above the critical level for treatment. It is hard to believe that that can is considered good news. I am to be referred to an ophthalmic surgeon for treatment.

We discuss various options and causes of why it has progressed so quickly and where it is going. It could be down to the Parkinson’s in part, he says.

A sort of Parky Blinders I suggest. He doesn’t get the joke.

Listening to the past

I have come to realise with the increasing age that genealogy is the province of the old. The young are too busy leaving their own lives to bother with those lives of others already completed. This is both as it should be but also as it is most frustrating. Trawling through ancient documents in the middle of the night, one feels almost a sense of proximity, of urgency, in their transcription.

My own children have been moderately uninterested in the process of finding of such genealogical study. Hang on, let’s be honest and replace “moderately uninterested” with “could not care less” that great aunt Desdemona was the first woman to breed a champion whippet in autumn 1823, or that 11 generations of Butterwick were agricultural labourers and married girls in the same village in the same parish church, going on to produce children, in turn baptised and married in the same church before death and burial in the same churchyard. The cyclic nature of life and the scope of its ambition mirrored in the parish ledgers. Most never ventured beyond the parish limits, finding all they needed therein. The next village was, without a hint of irony, “foreign”, its inhabitants “foreigners”.

Actually, just writing this makes them seem even less interesting than they doubtless really were. Lives were smaller then, both in duration and expectation. To seek to expand one’s horizons, perhaps by attending a different church – perhaps even a Catholic church (God help us) was seen as “putting on airs and graces.” This was Yorkshire after all, a county innately suspicious of such popery, with its stained glass windows and fancy incense choking the air with undue piety through its smells and bells. Pax vobiscum, Dennis.

Nor was the Methodist Church, with its sparse Wesleyan meeting rooms seen as equivalent, washed with its pale white light, free of distractions. Being able to recite long tracts of the Gospels did not impress God they felt. Modesty in all facets of life was the hallmark of Yorkshire worship, ingrained from the earliest of ages. You only have to watch Yorkshire batsmen in action to be transported to another age of grim self-denial, embodied in that bastion of Yorkshire cricket Sir Geoff Boycott, the knighthood coming in 2019 although Yorkshire folk had knighted him a handful of decades at least earlier.

Back to the genealogy. Despite my attempts to interest my children in the past, specifically their past, their disinterest continues to disappoint. I am worried that my several years of scholarship in this undertaking will be summarily consigned to the dustbin of history within a few weeks of my ultimate demise. Not for them, the details of deaths on the Somme and Passchendaele. Nor do they care about our phrenologist who appointed himself as”professor”. Or even our possible link to the Royal family of the Austro-Hungarian Empire.

In fairness, I was much the same at their age. I was well into my mid 40s before I succumbed to the spell of genealogy. I met countless aged relatives each Christmas who, when fortified by glasses of Advocaat (them not me), would expand on their knowledge of ancestors, especially the black sheep of the family. Invariably a degree of embroidering accompanied such pallid reminiscences, adding colour sometimes at the expense of accuracy.

My biggest regret was my failure to ask difficult questions of my parents. My mother alluded to liaisons dangereux with Eastern European nobility in her grandparents’ generation. And then there was, of course, Professor Mills who despite his professorial status – questionable at best, operated from a tiny windswept stall on the south pier in Blackpool, offering to read the bumps on clients’ heads while selling herbal and back pills, guaranteed to relieve all manner of ailments, or persuading the punters to attend his public lectures or even enrol in his teaching courses on mind and memory function.

And that is the enduring fascination with genealogy. Basic BMD (births, marriages and deaths) provides the starting point, the skeleton one fleshes out with further detail, sitting the certain from the less credible sources. Certificates are soon swamped by family testimonies, court reports, newspaper articles, military histories, medals and so on. Quiet, unassuming Uncle Obadiah turns out to be a train builder, even helping to construct the Flying Scotsman locomotive. That sort of thing, revealed on discovery of his diary. Okay, he didn’t work on the Apollo program but his locomotives travelled further total miles than any NASA rocket, and generally without exploding.

English English or American English

Nowhere has the death of the English language been more clearly illustrated than in the rise of ‘corporate’ English. You know what I mean – that needless use of ten words where one will do to suggest a greater linguistic reach than is otherwise apparent. But before I chew on this matter more, let me get all my ducks in a row, make sure we are on the same page and that we have enough wriggle room to reach conclusions and the win-win we so anxiously anticipate.

I’ll begin the blamestorming immediately. It’s America’s fault. Specifically I blame their every corporate boardroom of each multinational conglomerate where the English language is spoken (or mangled, misappropriated, disembowelled or abused).

English, and let’s not forget that it is still, however tenuously, called English and not American, is the language of Shakespeare and Dickens and, despite this weighty pedigree, is a language in evolution. All languages are. If they don’t evolve, they are lost to the pages of history. For example, how many can read, truly read, the language of Chaucer?

Take Welsh for instance. As a child on holiday in Wales I was openly amazed at this language which had clearly not evolved but remained rigid and inflexible, preserved more as a museum item perhaps and less as a living language. In tiny corner shops, ancient wrinkled crones, wrapped in warm scarves, spouted what seemed like gibberish, occasionally interspersed with English words such as ‘teenager’ or ‘lemon barley water’ and ‘refrigerator’, evidently words which had too little sway in common parlance to necessitate a specific Welsh counterpart. One can imagine some kind of Eisteddfod delegated to the preservation of ”microwave’, ‘diet plan’ and ‘garden centre’.

Even Germany recognises the need for linguistic evolution. In the First World War, faced with tanks for the first time ever, Germany struggled to find a word to describe them, plumping eventually for ‘Schutzengrabenvernichtungs- automobil’. By the time they had alerted other troops to the presence of tanks on the battlefield “Finden sie mir bitte schnell eine schutzengraben-vernichtungsautomobil”, (get me a tank quick) the war was over, frittered away in those extra letters and syllables. Twenty years later they had the much more catchy ‘Panzer’ and, for a while at least, things went much better for them.

Corporate bullshit, or bovine scatology, as General Norman Schwarzkopf famously dismissed the Iraqi propaganda machine, is everywhere. Many years ago I worked in a medical writing agency where we were expected to churn out this kind of drivel for clients impervious to proper English, too desensitised by corporate claptrap, to recognise a well turned phrase if it hit them between the eyes. A colleague, who I shall call Jim Jones, and I from the opposite side of the office would play bullshit bingo with unsuspecting clients. In case you are unfamiliar with the rules, they are few and simple. Players (the participants in a particularly tiresome teleconference) generate their own list of bullshit terms and wait until the clients use them. This continues until somebody declares bingo. Listen out while a reticent client asks to “circle back” on the proposition while they “get all the ducks in a row” then asks to “table this” so that they can get enough “boots on the ground” to pick off the “low hanging fruit”. Obviously it’s important not to “reinvent the wheel” whilst throwing the idea “up in the air to see what sticks”. Jim had an exquisitely sensitive ear for this kind of boardroom nonsense and generally won the contests. It all came to an abrupt halt after one particularly comical session when Jim, as usual, celebrated his victory by screeching “Bingo”. Jim learnt a valuable lesson that day: Always check whether your microphone is live. The explanation that followed from the client services representative was worthy of Blackadder at his most evasive.

Once I found my own grasp of the English language being polluted by these ridiculous linguistic distortions, I had to leave. Even without a new job in the offing, it was hard to stomach. I’ve never deluded myself that I am a significant writer but I simply couldn’t keep a straight face when asked to churn out more of the same.

As I said earlier, I hold most Americans responsible for the development of obfuscating terminology and its adoption by boardrooms around the world. Sorry chaps but color is not how you spell colour. And the opposite of day is night not nite. There is also no American equivalent of fortnight as I discovered once when trying to book a hotel stay for fourteen nights. Sentences end with a full stop not a period. British chips are American fries while British crisps are American chips. “Let’s get a handle on this” by an American means broadly “let’s try and understand this”.

Even in extremis our American cousins still find time for linguistic mangling. “Let’s catch him” a British policeman might say. His American equivalent might invite his team to “endeavour to apprehend this individual”. These terms even extend to our last cherished moments. No longer do doctors talk plainly of ‘death’ but wrap this in absurdities such as a ‘negative patient care outcome’. Well yes, patient care outcomes don’t come more negative than death. A kind of lose-lose scenario?

We don’t want to reinvent the wheel so let’s put a pin in it before we throw it up to see what sticks. While we work hard and play hard, let’s table this until we get boots on the ground. We can always circle back to get our ducks in a row or synergise before we hop on a call.

Water, water everywhere nor any drop safe to drink*

*Apologies to Samuel Taylor Coleridge

It is rare enough for Tunbridge Wells to appear in anybody’s newsfeed. Beyond the usual “Disgusted of Tunbridge Wells”, it is, in most people’s books little more than a minor tourist town between London and the cost. Although I believe (before my time really) that there was a poll tax riot in TW. Obviously not a riot in the sense of Toxteth but, in our dainty terms, a riot nonetheless. Several teacups were knocked over along The Pantiles and a couple of pensioners jostled outside the library although apologies were immediately forthcoming. A wing mirror was cracked on a car although the owner later suggested that it was already weakened.

Of course I can verify none of this. I came to Tunbridge Wells a decade or so later, before these events and mischief making acquired the status of legend. Honestly, my alibi is watertight.

On the subject of water (did you see what I did there?) Tunbridge Wells has been much in the news over the last two weeks. And I don’t mean a byline in The Courier or Sevenoaks Chronicle. No I mean national newspapers and broadcasters. We even got on television before the latest acts of lunacy from the White House resumed its stranglehold on the airwaves.

All of this is my way of saying that the water crisis in Tunbridge Wells has not been resolved. National newspapers and media outlets may be taking no interest now but the problem that caused their interest in the first place has not gone away. Okay we have water coming out of our taps at more or less full-strength. But we are still being urged, nay instructed, to boil all such water before ingesting it. This is at the very least an inconvenience.

In fairness, being apparently on the water authority’s “A List” as a result of the Parkinson’s, I don’t even have to fetch and carry. SE Water delivers it to me. I only have to leave the house for an instant and another twelve bottles appear on the doorstep. I finally drew that to a halt but not before a total of 84 bottles – that’s 168 litres – have been delivered. Far from being simply drought relief in a manner of speaking, this now poses a significant drowning hazard. The bath is full of bottles. There are bottles everywhere. And, in fairness to SE Water, if it were not for this allowance, life really would be challenging.

For the moment, the flyer from the government making clear that tap water must be boiled remains in force. But as of today (Friday) there is no indication of when the ban will be lifted. Not a squeak from SE Water or Westminster. Even the scientific explanations of prior and current events have rather dried up. A pity because, any absence of credible information provides fertile ground for conspiracy theories. Moreover, the chief executive of SE Water remains in post without a whiff of a resignation in the offing. And it’s not as though SE Water has an unblemished record of performance. It has previous. Continuing to reiterate the “just-boil-the-tap-water-and-it’s-fine” mantra while the chief executive hangs on by his fingernails doesn’t fool anyone. After all, they said the same after Camelford.

Water crisis -enough already

For around 9000 homes in my town, Tunbridge Wells, the last three days have been accented by a mains water supply failure. I won’t bore you with the details, only to say that, in the continuing imbalance between consumer expectations and shareholder dividends, there is only ever one winner. I’ll give you a clue – it’s not the ones searching for standpipes in the street or having to visit the local sports centre to pick up their allocation of water (around six bottles per capita). At peak demand (around Sunday lunchtime), a stationary queue of traffic extended most of the way out of Tunbridge Wells, beyond the sports centre, most of the way to Tonbridge, along St John’s Road. For those of you who do not know the locale, you will just have to take my word for it. It’s a traffic jam of biblical magnitude. The local MP has already called for the head of South Eastern Water, on a silver salver. Okay I made up the last bit – he may keep his head and – but will presumably lose his job.

You might imagine that this this supply pico-problem would be particularly trying for those of compromised mobility such as we Parkies – my nearest ‘bottled water station’ is a mile away on foot. In other words out of the walking range of many disabled.

Although there appears to be a general absence of any serious contingency plan for such an aqueous interruption, I can’t fault them here. I was aware on Saturday morning that something was amiss when I opened my front door to be greeted by 12 litres of mineral water. Various peeps have offered to help carrying the bottles in. Three hours later, another six have arrived unannounced. And then a further six around late afternoon.

The following morning, I open the front door to another 12, a virtual tsunami
of bottled water. Although still in my pyjamas, I scan the horizon for people hiding behind trees or dustbins clutching bottles and waiting to pounce with more water. They are stealthy, waiting till I leave the house, however briefly, to bring yet more.

And the water comes from Devon, Brecon, Lichfield and Cumbria, affording me the luxury of a blind tasting. The ‘blind tasting’, that bedrock of the wine industry reveals next to nothing about these waters. My palate is unable to tell between Devon and Cumbria, between Brecon and Lichfield. Or any with any other.

One of the bottles is simply labelled “Courtesy Water”, as though such a title is meaningful. This particular water, despite claiming it is fit for all domestic purposes still requires boiling before use to make up infant feeds. It is also the only water that offers no detailed mineral analysis. The others are positively effusive, openly flaunting their respective sodium, potassium, and calcium. One is even so confident as to list its ingredients – water apparently. And a Best Before Date. There’s confidence.

By the end of the second day of deprivation, the mains water is conspicuous by its absence and further bottles arrive in the time it takes me, or would normally take me, to shower. The bottled water suppliers are gaining in confidence, describing their water as “wildly refreshing”. Another is brought to us from “a Small Cottage in the Beautiful Brecon Beacons National Park”. It even has a Facebook page.

Meanwhile South-Eastern water is beginning to run out of apologies, having run out of water a some four days earlier. But I know they are “very sorry” (Sunday morning), “working round-the-clock” (same evening), “slowly sending water to the drinking water storage tank” (Monday morning) and “water is gradually returning” (yesterday afternoon). By 9 PM yesterday evening they were “making good progress and seeing supplies gradually return”. By this morning (Tuesday) they were “continuing to make progress” without detailing how. By 2 PM, we were informed that the bottled water stations would remain open until 10 PM although we had been told they would be unnecessary from Sunday. The latest bulletin explains that they are still very sorry and reassures us that they “understand how incredibly tough this is for the community”. You don’t say.

I am keeping my head down. For me this is not so much a problem of water absence as the deluge of bottled water. At least that seems to have at least peaked. There is water in every cupboard and crevice. Far from being short of water I am practically awash with bottled water. I have at least stopped the fly tipping of water on my doorstep. In terms of their response, I cannot fault them.

Mindful of The Wedding Feast at Cana, I’m thinking I might offer a reversed version – people could bring wine to me and I could give them water in return. But please, no more bottled water – enough already!

“This is Parkinson’s” – Ten years on

In 2014 an exhibition of 16 photographs changed the way we think about Parkinson’s disease overnight and introduced Young Onset Parkinson’s Disease (YOPD) as a separate subset of Parkinson’s. Being diagnosed with Parkinson’s at age 70 is completely different from a diagnosis at 40. Some may have as many as 50 years with the condition. Many are setting out on an uncharted journey. We do not know the truly long-term effects of many of the treatments.

The photographs that form the exhibition were taken by Anders Leines, a photographer journalist for Norwegian television. These were not faint ghostly withdrawn figures. These were lions looking straight at the camera and defying the illness to do its worst. There is no fear in these eyes, only determination.

The exhibition was called “Dett Eer Parkinson” and was launched in Oslo in 2014 The global launch, this time in English (This Is Parkinson’s) took place at the 2016 World Parkinson Congress in Portland, Oregon and attracted huge interest. These snapshots of young patients captured the public imagination with their courage and determination.

Returning to these patients 10 years later is even more revealing. Their stories still speak of courage in adversity, each finding unique solutions to commonplace problems. Above all these are stories of bravery. Read them here and share. Be inspired!

Trump, WPC and me

I find myself on the horns of a dilemma. I know that whatever action I choose will upset or disappoint some. That is unavoidable. Let me give you some context.

I have been diagnosed with Parkinson’s for more than 19 years now and have, for much of that period, been an active advocate for patient power if you will, endorsing many actions and initiatives.

Chief amongst these is the World Parkinson’s Congress (WPC), a triennial International conference interfacing clinicians, researchers and active patient advocates. There is in my view no better forum for learning (on all sides) than at this conference. Where else might clinicians have access to a thousand patients? Or patients find the opportunity to quiz the greatest minds in Parkinson’s? The answer is nowhere. WPC actively facilitates this interaction in a way that no other conference can manage. I have been to every single WPC meeting from Glasgow onwards. I have watched it grow in size and scope over the years. I was honoured to be one of the first group of WPC ambassadors.

Initiated by Stanley Fahn and now under the executive stewardship of Eli Pollard, the meeting has gone from strength to strength. I have consistently supported the meeting as presenter, advocate, blogger and so on. Under normal circumstances my attendance would be a given.

But these are not normal circumstances. Science, medicine and healthcare in the US are under attack in ways hard to imagine for a civilised nation. Under the cloak of presidential autocracy, president Donald Trump has unveiled policies calculated to diminish the standing of his political opponents. Journalists are threatened with dismissal or their voices silenced. Foreign students, legitimately present in the US, are having their rights removed. Some are even deported. Prestigious universities are under attack. Gradually – at a speed almost unnoticed – liberty is being eroded. This is not the politics for which the US has been justly praised – the compromise politics of yore. This is the revenge politics of a dictator, gradually eliminating his opponents and announcing their disposal at carefully managed rallies.

Okay, it’s red baseball caps this time instead of armbands. But the parallels are there. And sneering at the discomfort of his opponents is Donald Trump. It is not a figment of my imagination. America is sleepwalking.

Some years ago, at the inauguration of the first Trump administration, I vowed to a very good friend of mine that, such was my revulsion of Trump’s racist policies then, I would never visit the US whilst Donald Trump was president. I would not support his administration, tacitly or overtly, My friend has since passed away but that does not absolve me from my promise. Despite the personal cost, I intend to keep that promise and will therefore not be attending the WPC in Phoenix next year. Some things are bigger even than conferences. I would not feel comfortable attending this conference knowing that Trump’s anti-American policies would prevent others, from other countries, attending. This is not the great country I used to visit and take pleasure in doing so.

I want to be able to attend the conference again. I will be missing old friends that through the ravages of the illness may not make the next one. I may not myself. But I cannot square it with my conscience.

What will my tiny protest achieve? Probably nothing. But promises are promises. And whether President Trump would understand that or not, they are meant to be kept.

Writing about Parkinson’s

This presents a bit of a dilemma. On the one hand I want the largest possible number of people to buy the book. On the other hand, unlike my previous books which have only partly discussed Parkinson’s, this book is pretty much the whole schmeer. Okay it still suffers/benefits from my usual predilection for rambling on but in this case these tendencies are reined in by my co-author Jodie Forbes.

Let me give you a bit of background. Those of you who know me well are aware of my compulsion to write, ostensibly about Parkinson’s disease but often spreading to wider subjects. I had this idea for a long time – a book about Parkinson’s with a difference. Well, several differences actually.

Firstly, it would be written by patients for patients. Secondly it would be in the nature of a discussion between two patients with an extensive knowledge of the condition and its many faces. Thirdly it would be a realistic appraisal of the condition and its effects. Fourthly it would cover some of the areas that the neurologists are unable to cover sometimes merely by virtue of the constraints of the modern health service. Fifthly, the leitmotif of the book is honesty. The tone is positive realism. We don’t make ridiculous claims, we don’t sell snake oil and we don’t sugar coat it. Parkinson’s is ugly. But if you know that, you’re in a much better position to deal with it.

Jodie and I opened a bottle of Tokaji, switch on the recorders and talked. This is the result. As a matter of principle we allowed ourselves only minimal editing – to correct inaccuracies, improve English (spoken English does not always accurately translate into written English) and very occasionally to make ourselves sound more intelligent! Other than that, what you read is what we said and what we meant. Be warned!

This is not a book of the “I beat my Parkinson’s by green tea, purgatives and running backwards”. If it’s not evidenced-based, we don’t even give it space. As I said we are not selling snake oil here. We don’t go for conspiracy theories – pharmaceutical companies make drugs. We do not take the view that they have no interest in a cure. Quite the reverse in fact. The company that finds a cure does not cut off its own cash stream. Rather it wins the biggest prize of all. That’s my way of looking at it.

The book was released at the beginning of August 2025 and can be bought via Amazon. Search for AN ABC OF PD or by author. If you like it, post a review. If you don’t, still review it. It all helps.

Reviews so far have been very positive (5s across the board but we would love to have yours.

Sledging and sendoffs

The Lord’s test match between England and India finished around 5 PM yesterday (14/7/25) when Mohammed Siraj played on to a ball from Bashir. It was the tiniest of taps, kiss almost, and a damp squib to end what had been an astonishing test match. While commentators waxed lyrical about how this test had been one of the most exciting ever and a magnificent validation of the longer form of cricket.

I’ve never needed any persuading. Five-day test match cricket is, to my mind, the ultimate expression of the game, indeed for me at least the only true path. Even at my school, we were encouraged to respect the longest form of the game, with all its subtleties and nuances. The summer season invariably ended with a match against Rugby played at Lord’s over two long days. In schoolboy terms this was a proper test match. And the school was not without some degree of cricketing success – the college produced a dozen or so county level players, Christopher Martin-Jenkins perhaps the most immediately recognisable name. Several went on to play for England, with one – AG Steel – an England captain, playing in the first ever test match in 1880.

I wonder what these boys would make of all the shenanigans at Lord’s in this test. It’s all very well saying that, in the heat of battle, passions run high and the occasional unguarded remark might slip out. That doesn’t wash. The behaviour of the players in this most recent encounter has, in my view, crossed a line. To regard a tirade of profanities delivered directly at batsmen by bowlers and fielders (it’s usually that way round) as acceptable even in the cauldron of emotions sets a dangerous precedent.

I abhor sledging in any form. In its own way it is an admission of defeat. A bowler who sledges a batsmen is, in essence, admitting that he cannot dislodge the batsman by skill alone. In this most recent test match, behaviour has reached a new low. Siraj, rightly fined and punished for his behaviour earlier is merely symptomatic – there were plenty of others who transgressed in equally or worse manners. Carse grappling with an Indian batsman overstepped in many ways.

On some occasions, the misbehaviour threatened to boil over into actual fisticuffs. Again, it is unpardonable. What game to the players think they are playing? Football? How long before we have individual players nose to nose with the umpires contesting their judgement. And the umpires in this test hardly distinguished themselves with a number of incorrect decisions, sometimes reversed by VAR. On occasion they simply stood like rabbits in the headlights uncertain of what was taking place and how to deal with it.

Many are looking forward to Old Trafford, relishing the opportunity to resume hostilities between the two sides. Others, myself included, fear for the future of a game which tolerates this kind of behaviour. Rugby for instance is adjudicated with absolute authority by the referees. Referees are addressed as Sir when they are addressed at all. Players are not invited to offer opinions on a passage of play or to direct comments to a wider audience. Swearing is proscribed. Punishment is instant and severe.

Compare this to football. Players standing and shrieking in the face of a referee whose analysis of the game differed from their own is the modern norm. Players may surround and jostle the referee. It happens.

I fear we will look back on this test in years to come as a pivotal point. We stand at a crossroads. By all means, celebrate a marvellous test match from a purely cricketing stance. But let’s not delude ourselves that this outweighs any misbehaviour. It doesn’t. Cricket remains a family game, perhaps even more so nowadays. So let’s have an end to this misbehaviour. Giving a departing batsmen a ‘sendoff’ is wholly unnecessary. Nothing is more eloquent than silence.