Author: JSadmin

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.

Joining the Parkinson’s club

Every person with Parkinson’s can remember, often in exquisite detail, the moment when they were diagnosed and, in essence, joined the club. I’m tempted to capitalise “the club”, so pivotal will its impact become in subsequent years. For me, 11 December 2006 was the date in question and, rather appropriately I thought, 11 AM. Like an armistice in a way only this amounted to the beginning rather than the end of hostilities

My diagnosis appointment was perfunctory but decisive, leaving no wriggle room. As time passes the detail fades a little. But it comprised all the usual stuff – walking up and down, finger tap and so on. It didn’t take long. The neurologist in question, a German trainee from Düsseldorf, handed me two or three leaflets detailing the condition and invited me to return six months later. In the meantime, I was referred to Kings College Hospital for further investigation and potential recruitment into clinical trials.

I don’t recall being particularly shocked by the diagnosis or the means of its conveyance to me. I have been a scientist all my life and appreciate clarity of thought rather than medical platitudes. “Give it to me straight, doc” has been my motto for as long as I can remember. And I think that’s the point. It worked for me but I suspect this approach suits rather few.

At the time I was diagnosed, there was and still is a degree of controversy about the means in which people are inducted into The Club. There are, broadly speaking, two schools of thought here: on the one hand there is the gentle, soft-spoken and encouraging “we will help you all along the way” approach. On the other hand there is the, short sharp shock “get it over quickly” means of addressing the diagnosis.

There is of course a conundrum here. Parkinson’s is a long term neurodegenerative condition for which there is no cure at present. That’s the bad news and, grim though it is, it needs to be imparted to the patient. But it is also survivable, and can even be a source of inspiration, helping to refocus, in a positive way, the individuals life.

This duality has been a particular problem in terms of raising awareness. Paint a picture of unrelenting misery and the money positively gushes in. It’s a terrible condition and research is needed. Conversely, too fluffy an image, all smiles and laughter, pulls the rug from under the fundraisers’ feet. If the condition is that much fun we should all join. The truth is that it is both and also neither. Not surprisingly, few are able to walk this tightrope with conviction.

The diagnostic meeting is critical. At the end of the day, certain pieces of information need to be conveyed to patients at that first diagnosis meeting. Yet at the same time it’s important to acknowledge that once the P word is uttered, patients become immediately deaf to any further information. Most patients would be unable to tell you their birthday.

Given all the time in the world, one might wait until the P word has been absorbed before trying to pass over more information. But that situation doesn’t apply. In 15 minutes one must go from assessment, through diagnosis and onto treatment options. That’s a lot of big stuff to get across. And some things simply can’t wait six months until the next appointment. By that time, they will have Googled everything about Parkinson’s both good and bad. Books with titles like “I cured my Parkinson’s by colonic irrigation” encourage them (wrongly) to be feisty and challenging.

This is the point where I’m out of ideas. I can recognise the difficulties but I have no more to offer in terms of solutions. One thing we do know is that patients who are either given or acquire a positive outlook at diagnosis fare better than those who see it (wrongly) as a death sentence.. I’m pleased to see that, since my diagnosis, getting on for two decades ago, practice has changed. Increasingly diagnosis is made by neurologists rather than dilettante GPs, unused to imparting such a nuanced diagnosis as Parkinson’s. With Parkinson’s predicted to reach pandemic proportions over the next quarter-century, how we encourage positivity will have a huge bearing on outcomes for patients. We may not recognise it as such yet but we are part of a huge experiment that may even have bearings beyond Parkinson’s.

Melatonin mayhem

I get the weirdest dreams with melatonin. Let me give you an example:
I am a spectator at the Kokugikan stadium in Tokyo. The last bout of the day in which yokozuna Hakuho faces yokozuna Terunofuji. An explosive bout and one in which Hakuho prevails. He punches the air in victory (something yokozuna never do) and I decide to head for the exit to beat the rush of people leaving. I know a shortcut. Trotting along one of the aerial walkways in the stadium (there are none in reality) I meet Hakuho, armed with a revolver. He fires a shot and I feel it hit my shoulder (I think that corresponded with my pain as I fell out of bed.).

Suddenly we are in dense green forest in Greenland, walking along a long straight path from glade to glade with an unidentified girlfriend. We say little or nothing. The light is a beautiful dappled green , bright among the tall pines. Our breath and footsteps are the only sounds. As we walk, it starts to snow and by the time we emerge from the forest, the snow is more than a metre deep. Progress is slow but somehow we know that we have to reach this tiny chapel in the middle of a frozen lake.

As we reach the church, the girlfriend says “open the communion wine and choose a gun. They will be after us”. Suddenly there is now a third person with us. Unshaven, he speaks only in grunts. While I rummage around for glasses in the sacristy, he drinks from the bottle. Claret not Burgundy I note. There is a smell of incense in the air. We know “they” will be here by nightfall.

We wait and eventually, emerging from the fog are soldiers, perhaps a hundred, skeletal figures in bearskins tramping and stumbling through the snow. They open fire in a hail of bullets and as I am hit, I wake up. I am on the floor, wrapped in my bedclothes. It takes me a minute or so to work out where I am. I can’t find my wallet. Or the girlfriend.

Global economic Armageddon?

Tariffs, tariffs and more tariffs. There’s something about this whole tariffs farrago that is either ludicrously complex or exquisitely simple and I can’t quite decide which. But there are many players in this sequence. Let’s pick a single example of a country that makes cars and sells them to the US – we’ll call it LITTLELAND – that exports £100 million of cars to the US in the form of this 10,000 cars manufactured by CHEAPOCAR at £10,000 each. It costs CHEAPOCAR £8000 to manufacture each car. So the initial profit to CHEAPOCAR is £2000 per car (which incidentally will be taxed by the government of LITTLELAND) as it leaves the factories to the export company EXP2US. As the cars enter the USA, EXP2US is used to paying small import duties (let’s say 2%) to the US government. This makes each car imported into the US cost the dealers (SCREW-U) £10,200. SCREW-U will then sell the cars on at, let’s say a markup of £4800 making each car available to the customers at £15,000 apiece. SCREW-U makes £4800 profit per car.

Then let’s imagine a US president – we will call him FLORIDA ORANGE – who decides on a whim to increase the import tariff from 2% to 20%. This takes the price to the dealers from £10,200 to £12,000. Each car imported will now generate £2000 rather than £200 for the US revenue. SCREW-U now have cars costing them £12,000 each instead of £10,200 each. They now make £3000 less profit per car (a decrease of 37.5%)

Let’s summarise:
LITTLELAND – country of manufacturing cars
CHEAPOCAR – makes cars and exports some to the US
EXP2US – transports cars to the US and arranges import
SCREW-U – car dealer

These are the principal areas in which companies might have financial interests. Now I know it can’t be this simple because otherwise it would not have completely baffled the economists as to the rationale for these tariffs. But President FLORIDA ORANGE, clearly believes that he knows better than these proven field-if tested economists and that he can apply business rules to countries. I understand, and please correct me if I’m wrong, that FLORIDA ORANGE has a number of bankruptcies to his name so perhaps we should take his ‘famed dealmaking’ with a pinch of salt.

So who is going to pay for this nonsense? FLORIDA ORANGE clearly believes that it should be LITTLELAND which will have to pay £2000 per car to the US Treasury either directly or through CHEAPOCAR. Others may see it differently. But as long as the money is paid it matters little whether it comes from CHEAPOCAR directly, watching its profits from the individual cars evaporate or the same for LITTLELAND’s government. As for EXP2US, there is little incentive for them. Any money they might make will be eaten this up by the raised tariffs. The only obvious area of slack in the system lies with SCREW-YU, which will either have to take less money per car or pass the buck directly to the customer, presumably with some absurd justification. In the end it comes down to a very simple equation. Either Americans pay more for imported cars, or they don’t. If they don’t, then CHEAPOCAR suffers, making fewer cars.

Will somebody help me out here – because to me, this looks like global economic Armageddon. Please tell me I’m wrong. And why.

The foothills of dementia

Over the course of my life to this point I have been one of those people who happily talks to himself. Sometimes it’s just the odd word, other times entire sentences, paragraphs or scenarios. At school, in one of those boarding schools of random brutal discipline, I talked to myself and was roundly and openly vilified for the practice. “Stamford” I heard a prefect bellow across New Court “why are you talking to yourself? Are you going mad?” It reminds me, some 50 years later of that famous drill instructor in Full Metal Jacket.
I often talk to myself and find it no cause for concern. If it is an indicator that I’m becoming insane, it’s taking its time about it. I am no more mad than I have ever been for the last 50 years. Now when people ask me why I talk to myself I say “it’s the only way that I can be sure to enjoy intelligent conversation.”

However, brushing aside such jocularity for a moment, let me introduce a slightly darker dimension to such conversations. I mean of course The Big H. Hallucinations. From the marginal to the major, these are all a part of “The Parkinson’s Experience” as the great Phineas T Barnum might have styled matters. Partly the underlying pathology of Parkinson’s itself and partly the superimposition thereupon of complex psychotropic drugs, hallucinations represents that ragged edge between normality and delirium.

For me, hallucinations have been a predictable if, for the beginning at least, neutral companion, neither reassuring nor Intimidating. The usual stuff – crawling insects typically around the periphery of vision, disappearing upon any visual saccade.

Small animals too are not uncommon subjects of hallucinations, sometimes no more than a sense of presence rather than explicit visual sighting. What kind of animals? Mice, shrews and voles mainly. Certainly nothing much bigger. No need to worry about rats the size of cats.

As the condition progresses, the hallucinations becomes more complex and concrete. Visual persistence changes as well as does their perception as real, competing with real real, if you get my drift. Only last week, I was chased around the kitchen table by a guinea pig the size of a cougar. Fortunately, being of a reasonably widely read disposition, I realised instantly that this was not a guinea pig but a capybara. Of course that’s only part of the answer. I still haven’t established why a capybara was in my kitchen. This is where REM sleep kicks in, making the unbelievable believable. Once you have established that the house guinea pig is now the house capybara, anything is possible.

A good friend of mine was particularly troubled by hallucinations – not by the hallucinations themselves (for in truth he had none at that stage) but the idea of them, the notion that these alternative realities might one day show up to play games with his cognition.

Over the years, not surprisingly, the frequency, intensity, and credibility of my hallucinations has extended substantially. The flies and cockroaches are largely unseen, kept at bay by the mice, all the way up to the capybara. An entire food chain in action.

But the animal components of the hallucinatory landscape are infinitely less disquieting than the participation of human hallucinations. For a couple of years now I have been woken in the middle of the night by my children wanting to talk over matters of some urgency. Not in and of itself disturbing except for the fact that my children are all grown up now and dotted round the country. Dotted around other countries even.

How do these figures occur? As ghostly, pale ectoplasmic wraiths, translucent embodiments? No, they appear exactly as they would were they actually present. And do these figures fade away as I turn my gaze to them? No, again they are very real. I have become so accustomed to their presence that the only way I can distinguish them from their genuine embodiments is by trying to shake their hands. My hands pass through theirs.

I can hear you, dear reader, composing the question to me – if my hallucinations are this real, and I safe to drive? Will I find myself swerving into the path of oncoming vehicles or mowing down entire classes of schoolchildren? The answer is of course no, I can’t make those guarantees. And that is why I surrendered my driving licence last year. The toughest decision I have yet to face in the context of Parkinson’s, but a necessary one.

Am I becoming demented? Are these hallucinations the first foothills of dementia’s mighty peak? I don’t know. I have had Parkinson’s for some 18 years. Maybe I have held the line, like Stonewall Jackson’s Virginia infantry in the face of impossible odds. Maybe it can be successfully treated? I don’t have those answers to hand but I do know, if nothing else, it is time to ask the questions.

How was it for you?

You cannot open any webpage without becoming swiftly embroiled in a barrage of questions, increasingly probing and personal. I’m all for privacy and protection of my data but I can’t help feeling that by ticking these boxes I am neither contributing to my privacy nor maintaining it.

Go onto YouTube for instance. Five years ago this was easy and the limit of the interaction was to click the box. This brought up the video one had chosen, be that Japanese Taiko drummers, Christopher Hitchens spewing bile or The Great British Bake Off back catalogue. Or it might be Gavin and Stacey, Britain’s Got Talent (which on the whole, it often didn’t) or cheesemaking in Tasmania. That sort of thing. You click on the video, it starts, it finishes. End of relationship. That was fine. I liked that. YouTube was full of little nuggets. There were even Wagner operas there if you looked for them. YouTube was like the best attic you have ever visited, full of Edwardian candelabras, raffia baskets, wooden automata and Thunderbird models.

Try the same manoeuvre now and see what you get. Two minutes of videos advertising holidays in far-off destinations, served salmon pink cocktails on the beach at sunset by glamorous bronzed nymphs in bikinis. Or you can be told that the latest device for trimming nostril hair is “sweeping the nation” or perhaps “taking the world by storm”. Evidently these nonsenses work to the same script. One presumably generated by AI. And let’s face it, not the best advertisement for AI. In any case, unless you are very lucky in life, bronzed nymphs and cocktails are a world away from the windblown beach at Skegness in February, breakers lashing the rocks and sending more sanding into already gritty eyes.

You came to watch a short video on housing – remember? Well no, but by now you have completely forgotten what it is you sought in the first place. Oh yes, I remember – retirement homes in Sussex. The website itself is uninformative. They will be happy to furnish me with information but only if you I sell out an online form with my name in full, my preferred form of address (I rather like “your Imperial Majesty” but it doesn’t fit into the box), my email address, telephone number and availability over the next week for a sales representative to call me. This gets my hackles up immediately. I know a hard sell when I see one. And in general hard selling is reserved for those paragons of the property market, the timeshare. I click the box, against my better judgement and immediately another appears, telling me that I have failed to fill out several other previously unnoticed boxes such as the names of my children, criminal records, my bank account and so on.

After an eternity of filling out what seem to me to be utterly irrelevant answers to their questions I lose interest. If the retirement homes were that good value, the vendors would make that clear rather than rely on their persuasive powers on a phone call. Those of you who know me well would not put money on the sales rep in a mano-a-mano. I eat cold callers for breakfast. All of this shenanigans is sufficient to persuade me that I’m not interested in their retirement homes. I hit the back button, with the intention of clearing previous entries into the form, only to discover that this is somehow locked into the system. Whether or not I wish to buy their property, they still have my data. And as if that isn’t insulting enough, a pop-up appears from nowhere asking me to grade my experience. I’ll get to that in a minute. What was intended to be a few seconds skimming through possible retirement homes has turned into an odyssey of lost data. Fill out the form or not fill out the form? I am caught between Scylla and Charybdis.

Oh yes, that assessment form. We cannot interact with anything these days without being invited, cajoled or blackmailed into assessing them in some way. Was your experience (A) ordinary, (B) fabulous or (C) amongst the most sublime experiences of my life? This kind of assessments are clearly not written by scientists. There is little space for anything except fulsome praise. And even if your experience was pretty negative clicking the “bad” box embroils you in a further cascade of misery – why was it bad? What could be done to make it better? Sisyphus knew all about this.

YouTube then and now. And don’t get me started on cookies. In five years YouTube has changed from being information delivered in a sprint. Nowadays it’s Iike wading through treacle. Get rid of it. All of it.

Okay, you can leave the bronzed nymphs behind. Everything else can go.

New year in Vienna

It has been my habit, and the habits of my parents before me, to mark the beginning of the New Year by watching the broadcast from Vienna of the New Year concert, with a glass of champagne in hand. The programme, based around the waltzes, polkas and gallops of Johann Strauss and his family, never fails to throw up a few novelties and surprises. In recent years (the last couple of decades) it has featured dancers from the Viennese ballet, performing in one of the many gilded palaces in Vienna, providing a stunning visual counterpoint to the musicianship on the stage.

The conductor this year, and it changes every year, is maestro Ricardo Muti. I haven’t seen him in concert for some while and he appears to have not slept in the intervening decades, with bags under the eyes the size of steamer trunks. Yet he remains a suave presence in front of the orchestra punctuating the music with the occasional gesture or baton flick. Every conductor finds their own way of communicating that intangible essence at the heart of every piece. Strauss came from the most absurdly musical family. We forget, in the light of his hundreds of waltzes, polkas and so on, that his father, brothers and even mother wrote music and, gradually over the years their music has been accorded equal status with that of young Johann.

The end of the concert is always the same. The last two pieces, invariably unlisted in the programme, are The Blue Danube and the Radetzky March by junior and senior Johann Strauss respectively. There is always a little bit of teasing here as well, with the conductor playing only the first bar of the Blue Danube, to the traditional audience applause before turning to the audience and assuring them that he and the orchestra wish them a happy New Year. The waltz, played then without further interruption is then followed by the Radetzky March to close out the show. The march, in celebration of the Habsburg Field Marshal Johann Josef Wenzel Anton Franz Karl, Graf Radetzky von Radetz, is as brief as the general’s career was long. The conductor turns from the orchestra to the audience and encourages their clapping along with the music. Nothing more you understand – none of the absurd audience contributions that mark, or should that be mar, the last night of the Proms in the UK. This is Austria, perhaps the most straitlaced and stiff collared of all nations.

The orchestra remains overwhelmingly male (perhaps 90%) and Austrian although it makes great play upon its international nature. It’s 2025 and high time this changed. Every once in awhile I briefly entertain the idea of applying for tickets. But being allocated tickets alone occurs approximately as often as total solar eclipses. In any case this is an idle exercise – without selling a kidney or two (perhaps throw in some liver) they are out of the range of mere mortals such as myself.

Oh well…Until 2026, Ein glückliches neues Jahr to you and yours.

Eighteen years of PD

Everybody with Parkinson’s remembers the anniversary of the diagnosis or ‘parkiversary’. I am no different except that I have had more than a few. I was diagnosed with Parkinson’s on 11 December at Pembury Hospital at Tunbridge Wells. In itself the diagnosis was unremarkable, being delivered in a brisk no-nonsense kind of way by a female German neurologist on secondment from Hamburg I believe.

“You have Parkinson’s disease, Mr Stamford” she said, instantly reducing my wife to tears. “Dr Stamford” I said “that’s Dr Stamford”. She looked bewildered for a moment before countering with “but you are not a medical doctor”. “No” I said “I am a neuroscientist” before giving her a brief summary of my prior research career. My wife, quietly sobbing into a handkerchief in the corner, brought this sparring to an abrupt halt. “But you started it” she said as we walked back to the car. “No I didn’t” I offered in a feeble attempt at humour “she invaded Poland”. My wife’s raised eyebrow indicated that the conversation was over. We briefly compared notes before setting off back to work.

All this was the work of a single lunchtime, exactly 18 years ago today. The neurologist, Dr Panzer*, did not invite questions. I just simply became a number, a new manila folder to be filled with shaky spirals, samples of handwriting, and all the usual scans. For that lunchtime, the folder had my name, address and GP. Dr Panzer referred me for an MRI scan and the pages began to fill up further folders (and this is a real folder, not a computer icon).

Before levodopa, life expectancy was poor. Six years from diagnosis to death. And if we are honest, six rather shitty years at that. To reach 18 years of Parkinson’s is, though I say so myself, something of an achievement, albeit a largely passive one, achieved through some 60,000 tablets, potions, salves, balms, and implanted electrodes to stimulate deep brain structures. Oh and exercise of course.

Eighteen years. If it was a lodger, and I sometimes think it is, albeit a largely unwelcome one, the notion of it occupying the spare bedroom in perpetuity would be decidedly unappealing. Even if it was one of one’s own children, 18 will usually be the point where it would be packed off to university with student loan and armfuls of books.

Okay Parkinson’s, it’s time to go. That’s you to go, not me. They have even demolished my local hospital and built a new one in the time you have been occupying my brain, bouncing around in my basal ganglia, lolling on the loungers of my limbic system. 18 years is too long to occupy anyone’s brain. You have wasted enough of my life. I would like to say it’s been lovely but it hasn’t. Take a hint. You are the worst kind of houseguest. If I could kick you out and change the lock, I would do so.

*You didn’t really think that was the neurologist’s full name?