The floating hotel

This is probably going to sound terribly snobbish but I want to talk (or substitute “rant” if that fits better with your take on things) about cruise ships and liners.

Many use the terms “liner” and “cruise ship” interchangeably but there is, in fact, a world of difference. Sad to say, the liners largely belong to history. Magnificent ships that they were, they were principally conceived to transport people across the great seaways, their raison d’être being created back when air transport across the Atlantic was still a little haphazard and, to some degree, a good opportunity to put your affairs in order.

Airliners of that post-war ilk were prone to the vagaries of the weather in the north Atlantic. Even the title – airliner – suggested an entirely erroneous kinship with the true liners. While the airliners lurched, creaked and yawed their way from cloud to cloud, they might be serving dinner at the Captain’s table twenty thousand feet below. No trays on laps, like TV dinners, with the true liners making their way majestically across from Southampton to New York. If you travelled first class, dinner jackets and ballgowns all the way, you felt like royalty. Indeed many travelling first class were actual royalty.

Of course travelling by liner was preposterously expensive. But then, airliners were also costly, seeking to make a virtue out of necessity, emphasising in their promotional material the value of shaving four days off the crossing (much as Concord, in its own day briefly offered the international traveller). Transport cost more in real terms then than now.
The reliability of long range jets polarised travellers into one of two groups – those for whom the destination was the key and those others for whom destinations were immaterial. The first group was well served by the Boeing 707 and its progeny, while the latter group and its less sophisticated needs spelt the gradual demise of the great transatlantic liners.

Even the names – Queen Elizabeth, Normandie, Titanic, Canberra, Olympic, Oriana – spoke of pride in their construction, hinting at aquatic nobility. While Cunard and the White Star Line largely dominated the transatlantic market sector, another market existed between Europe and the Far East, under the aegis of the Pacific and Orient Steam Navigation Company (P&O to you and I). Nevertheless, the ethos was the same – to get you from A to B, in style rather than at speed.

And of course the ships got bigger. The Olympic, built by Harland and Wolff of Belfast in 1910, for the White Star line, weighed 46,440 tons and carried 1447 passengers. Half a century later, at the very zenith of the industry, Cunard’s Queen Elizabeth II, built on the Clyde and launched in 1967,, tipped the scales at 70,327 tons and carried 1877 passengers. But by the late 60s, the transatlantic liner industry was going nowhere. Doubly ironic then that this decline should be paralleled by a huge expansion of the cruise lines – ships that more or less literally went nowhere or, at least, nowhere that mattered.

It’s no use lamenting the passing of the great transatlantic liners. Difficult though I find it, these new ships, floating hotels in reality, are a huge success. After all, why carry a thousand passengers for five days, when you can carry five times as many for twice as long. On mathematics alone it’s a no-brainer. To me these floating hotels (for that’s what they are) are a blot on the seaways. Gone are the beautiful sleek curves of the QE2, replaced by the vertical sides of a tower block, some 20 levels high.

Take the latest floating hotel, Wonder of the Seas, operated by Royal Caribbean line upon completion in 2022. Sister ship of Allure, Symphony, Harmony and Oasis (all of The Seas), this behemoth weighs in at 236,857 tons, and carries marginally under 7000 passengers. Oasis? Seriously? Do the operators know what an oasis is? Or should that be holidaymakers because the word passengers suggests destination and of course there is none.

But if ‘going nowhere’ is your thing, if 14 days of still blue ocean and white beach floats your boat, then listen to this. Wonder of the Seas, soon to be replaced by an even bigger ship, boasts (and that is very definitely the word) four swimming pools a basketball court, children’s waterpark, out door aquatic theatre, a children’s playground, a surf simulator, a 10 storey zip line and two rock climbing walls. Along with the usual themed restaurants, cinemas, and theatres. It doesn’t say so but I imagine there is a golf course in some form. A putting green at least. And bars – did I mention bars? Themed after popular television series perhaps? Casinos? There is even a ‘Central Park’ with more than 10,000 plants. Presumably there you can recreate an authentic New York style mugging experience at knifepoint?

And then there is all the ruckus over these giant ships making their way down the grand Canal in Venice, leaving a trail of ecological destruction behind and dwarfing from the 20th storey structures meant to be seen from the ground. These Tyrannosauri of the oceans somehow manage to skip over the Venice of Canaletto, Bellini or Titian. No wonder the locals are so embittered.

Joking aside, you do have to ask yourself the obvious question – is this what people want? And the answer to that is very much so. I may be the last man sat at the Captain’s polished mahogany table in my dinner jacket, sipping a Negroni, while the captain regales us with genial anecdotes from a lifetime at sea. Fast forward 50 years – I am sat in what appears to be a burger restaurant, tucking in to my McAwful or whatever it is. I am dripping with chlorinated water all over the bright orange plastic chairs and table with designs of cartoon fish. Nobody cares. The ship’s crew love it. Nearly all from the hotel and catering industries rather than maritime types, they can hose down the area at the end of the day. Waiters and housekeepers are fine until you run into difficulties. Since the ship’s crew speaks as many languages as the tower of Babel, let’s hope the lifeboat drill doesn’t prove necessary.

To me, this kind of populist holiday making and alcohol-fuelled bonhomie is a Dantean vision of Hell, no more no less. But numbers talk. The aged liners are now largely rusting hulks or long since scrapped. Ecological timebombs also, riddled with blue asbestos over their corroding skeletons. These new ships are mostly full of hedonistic ‘fun’ seekers. It’s all too much – I shall have an attack of the vapours…

I have been thinking about the next ship in the line. ‘Sick of the Seas’anyone?

Hungry Heart

With artists who have recorded many singles or albums, I often like to think of say a dozen of their songs that, if I was ever asked, would happily form a ‘best of’compilation album. Many artists would fit that category, perhaps none more so than Bruce Springsteen, the legendary ‘Boss’ of rock, ever since Jon Landau proclaimed him ‘the future of rock ‘n’ roll’ in 1974.

Rock ‘n’ roll is about relevance. It’s about recognising characteristics in your audience and playing appropriate music. But it goes beyond there. That will grant you success perhaps but it makes no promises about longevity. This year’ bright tie-dye T-shirt is soon enough faded and torn,, wiping down garden furniture on the patio.

Songs about Emmy Lou’s bronze skin in the sunset, fumblings in the back seat of a ’63 Chevy’s give way to families, employment and unemployment. Then the internal diatribes about enlistment and foreign wars, unemployment and disillusionment. Laments about friends lost literally or metaphorically in the jungles of Southeast Asia. And before you know it, the city skyline and bustling noise has given way to tumbleweed, dust storms and crystal meth. A life outside the American dream.

Somehow Bruce manages , nearly 5 decades after Landau’s review, to still be relevant. After all who else could start a song with the words “you do the drying, I’ll do the dishes”and get away with it? In anybody else’s hands it would be trite. In Bruce’s hands it becomes a sorry vignette of a failing marriage and the desperate need to believe that all is well. Bruce lays bare the American dream. There is no deerhunter Thanksgiving dinner. Bruce consistently eschews the fairytale endings, leaving the gritty perseverance of the working man.

It’s hard to see how this man with personal wealth of some $650 million can, in any way, be relevant to a steelworker in New Jersey or a border drug runner in New Mexico, or any one of the disenfranchised to whom his songs have spoken. And yet it is. And he speaks in a way that makes every song seem to have been written specially for each listener. There is perhaps nobody who could not find his own song among the many.

Bruce found the pulse some 40 years ago, stripping away many of the more complex instrumentations of the first three albums in favour of the leaner and darker psychosocial simplicities from Darkness on the Edge of Town onward. And he got it right.

Bruce’s longevity is somewhere beyond astonishing. Not only does he appeal strongly to my generation (sixty somethings) but also my children, who grew up to the sound of Bruce on the car stereo on the way to school. When a new generation finds continued relevance and meaning in his songs, you know that he has hit the mother lode.

Here are my favourite songs – my compilation album if you will. I’m sure you have others.

Tenth Avenue Freeze Out, Philadelphia, Living Proof, Ties That Bind, Downbound Train, Born In The USA, Adam Raised A Cain, Promised Land, Independence Day, Brothers Under The Bridge, Nebraska, The River.

What then must we do?

Last week I attended the world Parkinson’s Congress (WPC) in Barcelona. These meetings in general inspire me but this one particularly so. In the past my response has typically been to increase my output in my regular job. That applied when I had a job. But for the last few years I have been functionally and spiritually perhaps in retirement. This particular WPC meeting has lit a fire. But how should I respond to this fire? What is an appropriate means? As was adequately discussed at the recent WPC, there are many different ways of helping and many of those would be considered to be advocacy in one form or another.

I have been an advocate in one form or another for much of the last decade and perhaps a little beyond. I was one of the cofounders of the late PARKINSON’S MOVEMENT, this organisation representative of its time but now largely part of the fossil record, swept away by PD Avengers. I jointly founded a group entitled PARKINSON’S INSIDE OUT, a think tank of specialists all of whom had Parkinson’s. A good, if short lived idea. I made a series of videos with Eros Bresolin, PARKINSON’S MOVEMENT WEBINARS or pod casts before such terms were bandied about. I made another darker set of videos entitled THE DARK SIDE OF PARKINSON’S, with prize-winning cinematographer Anders Leines, addressing some of the more taboo subjects within Parkinson’s. Well received critically but still awaiting funding to produce a second series. And I’ve recorded or been recorded a number of Interviews on matters parkinsonian. I have published a half-dozen or so papers on patient -related research in addition to my papers and reviews in my former life in the laboratory. And I have written, for many years now, a blog, at least in part relating parkinsonian matters. These, in turn, have formed the backbone of the book series entitled SLICE OF LIFE.

Okay, I haven’t found a cure for Parkinson’s yet and, no longer working in the laboratory context, am unlikely to. But I have been a member of several patient advisory panels on new therapeutics, and so on. I also review papers as well for various journals and I’m on the editorial board for a couple of them. So I’ve not been idle! I can do stuff. I’m still, in part at least a scientist
This reads a bit like my curriculum vitae or résumé. I suppose in a manner of speaking it is. Because I’m presenting myself here to you and I want you to help me to help you. Does that make sense?
I want to help, I really do. And I’m emerging from a comfortable retirement to throw myself again into advocacy in some form.
But what form? I don’t know yet but it seems to me that it must be somewhere where I can make a difference. Somewhere that plays to my strengths. Although I can rattle a tin as well as the best of them, I don’t think this is my best use. Okay, what is?

Let’s be honest – you saw this coming, right? My reflexes are a little slow these days and I will doubtless have some ring rust to clear before I’m able to be helpful. So let’s step forward. I would like to ask you to tell me where you think I can best help. For instance there are some examples:

1) write a major book on Parkinson’s, for a patient audience or wider. You tell me.
2) audiovisual aids on Parkinson’s?
3) a major motion picture? Featuring Mel Gibson as me.
4) a newspaper column detailing the day-to-day vicissitudes of Parkinson’s
5) making a nuisance of myself in a laboratory again
6) helping people without experience to write high quality grant applications.

These are just a few ideas of the top of my head. I’d be perfectly happy if you weren’t interested in any of these but have other plans that I could help you execute. To return to what I said above briefly, whatever I do has to be impactful and effective or I might just as well go back to watching afternoon television. So think of it as a mercy mission, saving me from endless reruns of Supermarket Sweep.

So please email me with your ideas to re-purpose me! The email address below should be obvious but I have quoted it in this form simply to avoid being auto-spammed by Filipino brides, llama sanctuaries and dodgy stem cell vendors.

j underscore a underscore stamford at yahoo dot co dot u k. If you read it aloud it makes sense

“What then must we do?” Asked Tolstoy in his book of the same name.

You tell me.

Advocacy and caring

Who is an advocate? Is it the middle-aged man, at the height of his professional career, on the stage talking in stark, certain terms of Parkinson’s and all its ramifications? Is it the older woman, standing outside the railway station shivering in the rain, while rattling her collection tin for her daughter? Is it the initially reluctant teenager, going door-to-door with literature and collection tins, trying to square his own actions with his conscience pricked by his shaky granny?

Are these advocates? Do they tick the boxes? Do they increase awareness? Do they support research? Do they help relieve the burden of people with Parkinson’s and their carers? Let me ask you again – who is an advocate? In their own small way each is an advocate. But also none. Because until you understand Parkinson’s, you will always be a surrogate. As a good, now sadly more distant, friend of mine once said “if you haven’t got it, you don’t get it”.

Do I sound ungrateful? Yes, I suspect I do. The man on the stage, the shivering rainsoaked woman and the teenager in his hoodie are all vital cogs in the machinery. Raise money for research because without it, there will be none. No research means no treatment or cure. It means that we will have to explain to our children why people still suffer from a condition we have known for more than 200 years. We will have to say that we did not do enough. And we did not do enough because we did not care enough.

And why did we not care enough? Because, when you bring Parkinson’s home and personalise it, it’s unappealing. It’s granny, fixed expression on her face, dribbling her soup down her smock hearing nothing and contributing as much. Why? Because nobody thought to check the batteries in her hearing aid. It’s the smelly old man in the corner of the nursing home playing solitaire with his pack of cards and quietly sobbing. His daughter no longer visits, declining to change his pads and robbing him of those last shreds of dignity.

Advocacy is easy. And we, the delegates at the 6th World Parkinson’s Congress are a world removed from these dark spaces. While we drink sangria over tapas, renew old friendships and listen to the latest thinking, it’s easy to believe that Parkinson’s is a pussycat and not the ravening beast clawing at our very being. Yes, Parkinson’s is congresses, science and learning. These are still essentials. But let us not forget those other darker realities. Because these are as much a truth as any other.

Spare a thought, amid the hubbub, for those who are not with us in Barcelona. Let’s make a point of remembering why we are here in that great Catalan capital. We are here for one reason only – to alleviate suffering and hasten an end to this pestilence. Remember granny, talk to Granddad, help all.

Leave the conference brimming full of ideas. Ideas that will help expedite the end of Parkinson’s. Think of all those things that could reduce suffering and improve quality of life. Because the reality for many is a quality of life so blighted as to be barely a life at all. And do it with the others firmly in mind.

Never let it again be said that we did not care enough. Never.

Words of a WPC veteran

I have attended all except the first WPC meeting in Washington. I went to Glasgow in 2010, Montréal in 2013, Portland in 2016 and Kyoto in 2019. And, barring the unforeseen, I shall be in Barcelona in a month’s time. Each meeting has provided me with new information (both as a scientist and as a person with Parkinson’s). Each has stimulated new trains of thought, new ideas, new projects and passions. In some way or other, each has been enriching for me.

But this year more than any other, as I have felt the weight of old father time on my shoulders, I feel I have an obligation to try and pass on what I’ve learnt as a patient over the years.

WPC is overwhelming. If this is your first such conference attended, it is easy to be thunderstruck by the sheer scale and breadth of science on offer, the number of different approaches to self-management, and the friends you will make along the way. I met people in Glasgow 13 years ago that I value among my closest friends to this day. It is no exaggeration to say that I am still here because of their friendship and support. And I hope, in some small way, I have helped them. So how do you get the most out of your time at WPC? You can’t do, see or hear everything (more’s the pity). You have to be selective to get the best out of the meeting. And believe me you want to get the best! So here are some thoughts in no particular order.

1) DO YOUR HOMEWORK! You will get much more out of the meeting if you put an element of planning in place beforehand. Work out when you will arrive and leave and how the programme maps to those timings. The problem with parallel sessions is that you often want to be in two places at the same time. You have to prioritise and the first day of the conference is not the time to do it. Work out as much as possible the key sessions that you really want to attend. Don’t be distracted. Mark up your program.

2) TAKE NOTES. I have often relied on my memory but, over the years, it has become apparent that this is unreliable. Besides, by the end of the conference, there will be so many ideas swirling around in your head that you will not remember who said what when and why. Even if you just jot down the name of speakers and the odd line about what they said, it will make all the difference in the weeks that follow.

3) GO BEYOND YOUR COMFORT ZONE. Sometimes it makes sense not to attend the obvious sessions with familiar titles. Challenge yourself some of the time to learn about areas that are new to you. Not all the time, obviously. But try to factor in some time for the unfamiliar.

4) ASK QUESTIONS. It can be daunting to put your hand up to ask a question. But don’t be put off. This is exactly the kind of conference where you can ask questions without fear. Speak up and be heard! But don’t personalise. This is not a forum for addressing your own treatment. Keep the questions general.

5) QUEUE FOR COFFEE. You will be surprised how much people talk in the coffee queue! The science and the ideas do not stop when the applause dies away! Always keep your ears open.

6) LAY OFF THE SANGRIA! Don’t forget, jetlag and alcohol are a poor combination. Try and hold back during the opening reception! You’ll thank me later!

7) COME AND TALK TO ME. One of the very best parts of these conferences, for me, has been making new friends, hearing what makes them tick and exchanging views.

8) ENJOY YOURSELF. If you do nothing else, this will justify your attendance and fuel your attendance at future WPC meetings. Go for it.

The message and the messenger

I recently watched a wonderful film called “Don’t Look Up” starring Jennifer Lawrence and Leonardo DiCaprio. I’m not giving away too much of the plot when I say that the central theme is the discovery by two astronomers (Lawrence and DiCaprio) of a giant comet on a collision course with Earth and the struggles of the above two to have the issue taken seriously by US government and media. I didn’t know whether to laugh or cry. The portrayal of the US president by Meryl Streep is helplessly funny.

It got me thinking about the many ways in which journalism conspires against science. And I think this is a unique position. It’s not that the science is intrinsically complex (although it often is) per se, it’s more that this is not seen to be personally relevant. After all, how many of us really understand say derivatives and suchlike in the stock market yet we happily hand over our money for investment in these arenas. At worst, this is the equivalent of making someone who can spell hepatosplenomegaly head of NASA. They may have won the spelling bee, but understand nothing of the science.

It is too easy to confuse the message with its messenger. In a cloud of social media interactions, we are more interested in “likes” and comments than core substance. What does a “like” actually mean? So many may well click the like button on this piece without actually liking it at all. It is really a gesture of acknowledgement, nothing more. Why bother? If I don’t provoke an opinion or evoke a reaction, I’m wasting my time.

Some years ago the Royal Society operated a scheme of media fellowships and I very nearly applied for one but it coincided with a particularly productive period of research in my laboratory. I thought it was better to push the science further rather than learn how to communicate it to people who don’t have a background in science. But there was also a fundamental difference in ethos. The media fellowships were intended to train scientists in how to communicate their science rather than the other way round. The idea was that scientists would work in newsrooms and learn how to communicate the science against competing news stories and time deadlines.

Essentially this was one way traffic. Although placing scientists in newsrooms had value, there was no apparent interest in say putting journalists into laboratories. It was always a case that we, the scientists, had to play in the journalists’ backyard not the other way round. I would have loved entertaining a journalist in my lab and getting them to understand what motivates scientists, what their drives and urges are, and why it is so important. To me that seems an opportunity lost.

There is a danger in dumbing down science. In the end, readers and viewers have the headline but not the column inches that support it. A good friend of mine is one of the best people I know for generating headlines and taglines. Call me a snob if you will but I feel that’s something of a wasted intellect. A brilliant pun does not make somebody read an article. And if it does it is in some way an indictment of journalism over science.

Science isn’t always simple. Often it isn’t. Often complex concepts cannot be condensed to the time period of the average crap.

Take my field – neuroscience in general and Parkinson’s in particular. At one level, Parkinson’s is due to a loss of dopamine in the brain. Simple. Let’s dig a little deeper – it’s one particular part of the brain, the basal ganglia, which receives nerve input from the substantia nigra. Did you see what I did there? Already we have talked of regional differences and we have introduced two new terms. Less simple. What causes these cells – we call them neurons – to die? If we are going to talk about causes and prevention, we need to say something about this. It’s about here that we come up against the point where knowledge and hypothesis collide. We know a little bit about how they die but less about why. This is the point at which the media loses interest. There is no simple way of giving appropriate weight to this lack of certainty. Media stories require a beginning, middle and end. Science is open-ended. One answer generates two questions. The media does not work like that.

This trivialisation and misinterpretation leads to all sorts of nonsense. I’m tired of the current conspiracy theory – that pharmaceutical companies do not want a cure for Parkinson’s. The reasoning behind this is that, by doing so, they would eliminate their own source of income. This is paranoia. I don’t believe for one second that drug companies are philanthropic but I do believe that, if they are engaged in Parkinson’s at all, they are looking avidly to be the first company that finds a cure.

This brings me full circle. If people entertain this sort of nonsense, it is due to the failings of people like myself as scientists (and I just about still qualify) to communicate our message in a sea of sometimes ill informed but persuasively written journalism. Therein lies the dilemma. Dumbing down of science is a slippery slope. Eventually you reach the point where the science or the story has to take priority. I’m not sure I would make the same choice as a newsroom editor.

The Armada comes to Southend?

A good friend of mine, that I shall not embarrass by using his name, said to me recently that he admired my get-up-and-go. If I made up my mind to do something, I would not prevaricate. Once decided, off I went. I make a decision and then act upon it. No further discussion.

Let me give you an example. An item on the BBC website last week talked about a Spanish galleon visiting our shores. Last week it was moored in Weymouth but, more usefully, it was due to arrive in Southend at midday on Wednesday and moor at the end of Southend Pier.

Not the kind of thing you come across every day, I thought. Besides, hadn’t we sunk the last bunch of galleons to come our way? Francis Drake? Playing bowls? Fire ships et cetera. It all comes flooding back.

Well, this is of course a replica galleon, not the real thing. None of those left. Nonetheless, worthy perhaps of a little excursion with the camera.
Geographically it looks simple. Thirty five miles as the crow flies. Easy peasy.

The thing is that the crow doesn’t fly from Tonbridge to Southend. The crow’s hypothetical 35 miles transmogrifies into 56 miles by road and sill more by rail. Big deal I hear you say. And for any other motorist, the 56 miles present no obstacle. But for old parky boy here it might just as well be 500 miles. My motoring these days is confined, by mutual consent with my children, to little more than trips to the supermarket or to the local pub for a glass of alcohol free stout (and yes such a thing does exist). You have to know your limitations and these are mine.

But a few weeks ago I was issued with my disabled persons railcard, providing a 33% reduction in rail fares. So I decide to let the train take the strain. No crows, no cars. Onto Trainline to calculate the various permutations of the journey available to me. 09:44 Tonbridge to London Bridge, due to arrive at 10:19. A quick overland schlep to Fenchurch Street in order to catch the 11:12 to Southend Central due to arrive at said destination at 11:58. Simples.

For a normal able-bodied person with a car, the itinerary goes something like this:

11:00 a.m. Get in car and drive to destination.
12.00 p.m. Get out of car at destination.

For myself a person with Parkinson’s it’s more like this:

6:11 AM all Start to draw up list of required items (medications, sunglasses, hat, disabled Railcard, blue badge, walking stick, tens pads, camera, phone and three speed orbital sander. Yes, you’re right about the orbital sander – just checking to see who is still awake.
6:55 AM Pack said items (minus the orbital sander) into appropriate bag.
7:05 AM Go through selection of bags to determine which is most appropriate. Finally pack the items into the bag again.
7:33 AM Go through possible weather scenarios in order to travel with due deference to the weather but not obsessive.
7:38 AM Take 30 minutes to redefine obsessive and weather. Repack bag once more.
8:08 AM Leave house.
8:11 AM Return to house and check all doors are locked.
8:13 AM Leave house.
8:20 AM Reassess weather and decide Arctic grey Russian hat is surplus to requirement. Return to house to adjust packing.
8:23 AM Leave house.
8:37 AM Arrive at Tonbridge car park.
8:38 AM Take 11 circuits of car park to decide upon the best disabled parking spot. Switch off engine.
8:43 AM Switch on engine after seeing a car vacate a better spot.
8:49 AM Pursue said car to exit then take said space. Switch off engine.
8:58 AM Stand behind painfully slow woman to buy a ticket. Woman is from Latvia, has two children and a husband in the Russian army. She does not understand the ticket machine and is trying to scan her passport. The queue is getting longer. Rail employees explain that she does not need her passport. This takes a while. None speak Russian. Trains come and go including mine.
9:11 AM Mood of the queue is turning ugly. Nobody able to help (unless tut-tutting counts). Decide to pay on train.
9:17 AM Take the next train. Conductor cheerfully informs passengers there is no working toilet on the train. Not good news.
9:58 AM Jump off the train at London Bridge with the kind of speed associated with Olympic sprinters on way to toilet.
10:01 AM Snatch victory from the jaws of defeat so to speak. That was a close one.
10:11 AM Set off to Fenchurch Street on foot.
10:22 AM Lurching walk persuades me taxi is the better deal.
10:26 AM Flag down taxi.
10:27 AM Swiftly realise taxi driver is unrehabilitated West Ham supporter.
10:28 AM Forced to listen to entire lifetime’s worth of racist drivel.
10:41 AM Decide not to tip him.
10:42 AM 30 minutes to spare before connecting train. Time to compare the culinary options for lunch. M & S for a sandwich of crayfish tails, a side salad and a pomegranate spritzer. Or Burger King’s “Meat Is Murder” slab of dead things in a bun.
10:51 AM Decide to slaughter crayfish instead. Not sure why things that live in water have a lower moral price. Not sure I would agree if I was a crayfish.
11:01 AM Train is announced. Platform three.
11:12 AM On time departure.
11:58 AM Arrive in Southend punctually after around 20 stops. Mostly modern boxy dwellings. Lots of BMWs with tinted windows. High preponderance generally of drug dealers it seems. Essex. Not a fan.
12:05 PM Walk down to Southend Pier. Masts visible in the distance. Decide to use the little railway. Decidedly rickety. Like me. The souvenir shop sells postcards showing occasions when it appears the railway collapsed into the sea. Not reassuring.

A word about Southend Pier. Apparently, and entirely unbeknown to me, Southend boasts the longest pleasure pier in the world at the length of 1.34 miles (over 7000 feet) and more than 2 km. By any standards, a large narrow projection out into the estuary although wide enough to have its own railway along its length. In the words of one time resident, the poet laureate John Betjeman “the pier is Southend. Southend is the pier”.

The length of the pier is largely determined by the geography. Southend mud flats extend so far beyond the coast that high tide is as little as 18 feet, making navigation closer to the shore impossible for keeled boats and yachts. The pier was first opened in 1889 and the railway a year later. Used as housing for prisoners of war during World War I, and by the Royal Navy in the Second World War, the pier has experienced several fires.

12:15 PM Join the queue waiting to be allowed to board the galleon at 2 PM.
12:35 PM Much queue jumping by people who don’t speak English. Apparently Spanish do not queue.
13:05 p.m. Take out my camera only to realise I have left the SD card behind. Young mother asks me not to swear in front of her child. I apologise and explain. Another takes my email address and offers to take pictures on her camera for me. Sue from Shoeburyness. Touched by her kindness but not optimistic I will see the photos.
13:30 PM Interviewed by local news station for their evening bulletin. “Is this my first time aboard a Spanish galleon?” Er…yes.
14:05 PM Nominal opening time of 2 PM comes and goes.
14:25 PM Gate finally opens and we are ushered/bundled aboard.
14:55 PM Shown off ship. Buy sticks of Southend Rock and head back to shore on rickety railway. Can’t remember when I last had candy floss. Must be decades. Decide against the “Kiss me quick” baseball cap. If
15Which:15 PM Same goes for the pirate hat.
15:22 PM Train back to Fenchurch Street.
16:11 PM Taxi to London Bridge (Millwall supporter this time, just as politically incorrect). He doesn’t get a tip either aIffter listening to the sewage which passes for informed comment in his book.
16:32 PM Train to Tonbridge. Uneventful.
17:29 PM Home.
17:54 PM Phone pings. Message from Sue. Photos of galleon attached. What a sweet lady.

Jon’s Joyriders

As some of you know I used to be a keen if less than gifted cricketer playing nightwatchman in my village’s 4th XI. At no point in my painfully drawnout cricketing ‘career’, if it can be called such, did I set the scoreboard alight with my strokeplay. I played each ball on merit – sadly my version of merit rather than that of the delivery. My forward defensive was indistinguishable from say a hook in the general direction of square leg.

In 2012 I retired from cricket. Then again in 2013, 2014, 2015, 2016, 2017, 2018, 2019, 2020 and 2021. And all points in between. I made more comebacks, if they amount to that, than a person who has made a very large number of comebacks. Each one was largely unnoticed. Even by myself.

My most recent retirement, on medical grounds was clearest. Having had electrodes implanted deep into my brain (yes, really – they don’t call it deep brain stimulation for nothing) and a battery pack in my chest, I was advised by my neurologist that playing cricket was tantamount to suicide. I thought he was commenting on my batting but he actually meant what he said. A direct hit by a cricket ball on my battery pack – and with my limited ability to read the delivery leaving the bowler’s hand, that’s a very real possibility – might rupture the cell and fill my chest with lithium. Not good. “And if that doesn’t kill you, I will” he said. “You are not to play cricket”.

“So, reading between the lines” I said, “you don’t think I should play cricket?” Even so, I don’t think he should have called security to have me removed from the building. I can take a hint.

So last season, following retirement number 10, I set out to find new ways of enjoying cricket from the sidelines, occasionally venturing onto the playing surface to bring out gloves or squash during the drinks interval, sometimes even discreetly helping myself to a slice of unsupervised fruitcake or a sandwich or two. Sometimes I took my camera to games and, occasionally got some good shots. My way of being involved as much as I could from the sidelines.

But this season I have discovered club fantasy cricket. Okay not the same as playing cricket but it does involve playing cricket. Specifically others playing cricket. Basically you enter a hypothetical team (derived from real players at the club itself) on a given budget. It’s all a bit IPL-ish. Each week points are awarded to the players on the basis of the runs they score, the wickets they take along with stumpings and catches. I shan’t name names but here are my 11 players.

TT – batsman. Started out as a spin bowler, much like his elder brother but has become a talented batsman.

AB – batsman. Son of one of the BYJ’s legends. Volatile and aggressive bat.

R LD – batsman principally. Fairly consistent scorer. Good anchor.

AW – batsman. Perhaps a gamble but could be a fair bet.

VP – all-rounder. Guaranteed to take wickets and guaranteed to score heavily and quickly. Probably in everybody’s fancy team.

JH – all-rounder and captain. Lovely batsman to watch, beautiful timing and can be relied upon to bowl some overs if needed. A wise head on relatively young shoulders. The obvious choice for captain.

MHC – wicket-keeper. Replacing previous keeper who has broken his toe. Loves his cricket. Good egg and team player.

GS – bowler. Club legend. Say no more.

DO – bowler. I would have put him in the all-rounder category to be honest. Always likely to get wickets when called upon.

CM – bowler. Can also bat a bit if needed. Elegant bowling action reminiscent of Jeff Thompson to me at least.

TM – bowler. Another one who can bat a bit. Probably the most complicated bowling action I’ve ever seen but seems to get wickets.

After one week, my team’s lies 12th out of 33 teams. And I have high hopes for the season. In the spirit of the IPL I have named my team “Jon’s Joyriders”.

No oil painting

A little over a year ago, I commissioned an artist friend of min (Cathy Barcham) to paint a portrait of me. I gave her a very specific brief. The painting was to be executed in oils and of good size (100 x 50 cm). I was less concerned with an exact likeness. We have been friends for nearly 20 years and I asked her to use that understanding in the painting itself. I wanted her to paint a picture of me as a friend, warts and all. I did not want a simply flattering portrait. I set no timeframe for the painting beyond my own impatience. The painter however knows me well enough to be able to resist enquiries of the “how’s it going?” variety.

Why would I choose to have my portrait painted? Many of you may feel this act to be little more than self aggrandising nonsense, the supreme conceit and a triumph of misdirected narcissism. If that’s your view, that’s fine. You may stop reading here and I will wish you a cheery goodbye.

I think they’ve gone now. So let me just dismiss those points above. The painting itself dismisses most of these points anyway. I have sufficient insight into my facial features to realise that I am not a George Clooney, a Paul Newman or Robert Redford. Girls may indeed swoon at the sight of my face but that’s usually for different reasons! At least when they comment that I am no oil painting, I can demonstrate that I am!

But in any case that misses the point. The reason for commissioning this painting was primarily because of the way in which one’s expression changes during the course of Parkinson’s. We are all familiar with those blank expressions and soulless eyes that are so characteristic of advanced Parkinson’s. My intention with this was to try and capture something of me before Parkinson’s robs me.

But there are photographs surely? Why a painting? Yes of course but they fail to capture the subtleties of facial expression, the transient micro-expressions that an artist sees that the camera doesn’t. Don’t misunderstand – I am a huge fan of photography and its power of expression but when it comes to portraits, the camera falters. It had to be a painting.

I know of no painter who could capture my inner soul better than Cathy. I did not want an airbrushed, beaming, Bourgeois picture of self-satisfaction. I wanted something that would peer into the dark as well as blank back in the light. I wanted something that hinted at the unknown. For that, there is no one better than Cathy. This is her domain, capturing in a single brushstroke all of the unseen. Of those consoling hugs, the shaking night terrors, of hopes and fears. It’s all there. And I see more, the more I look.
When it comes to Parkinson’s, I am fundamentally on borrowed time. Each day invites me to do something extraordinary, to find new ways to communicate.

Those of you who have read this far will realise the ultimate purpose of this painting. It’s not about me. It never has been.

This is for my children.

World Parkinson’s Day 2023

You would think by now that I had got used to it. You It comes around each year and I still find myself struggling to find exactly the right combination of words to express my feelings. I’m talking of course about World Parkinson’s Day when we parkies strut our stuff (if that’s the right word) for the nonparky population. Each time we try to offer a new angle on the condition, perhaps hint at new treatments that, in their own little way, may help to relieve the symptomatic burden of the condition or even point towards a slowing of progression. But how do we square the circle? How do we persuade the general public, unaware of the conditions many facets, to part with their hard earned money in order to increase or speed up research.
We paint a picture of the condition at its worst – quivering, frozen, half sentient ghosts, their minds lost to impenetrable memories. We paint a picture of blank stares, of barely recognisable expression, of hollowed out shells of people. God’s waiting room.

But there is another side to this coin. The newly diagnosed. People not yet experiencing the condition in all its pomp. People just starting that journey – a tiny tremor here, a little muscle cramp there. Slowing but not yet to stand still. We are so sensitive to those starting their journey that we are at pains to point to a gentler, softer version of that same condition where it is possible to live meaningful and happy lives after diagnosis. That Parkinson’s is a paper tiger. We can live with it for years and years, each subsequent year representing a minor detriment in functionality. A gradual decline into nothingness.

I was diagnosed with Parkinson’s in 2006. 17 years ago as near as makes no odds. I have learnt much over the years about this condition and its effects. Yes, in the majority of cases you can live with this illness. You can pick over the wreckage and construct meaningful lives amid the devastation. And yes, it is a life reduced, a life in abeyance to this neurological scourge.

Above all I have learnt that people with Parkinson’s clutch at straws. We deceive ourselves in order to live. We tell each other lies to get ourselves through the day. For many years I was a scientist and scientists thrive on truth, honesty and integrity. When I became a patient I found myself consciously putting the gods of truth and honesty to the back of my mind and telling people what they wanted to hear rather than what they needed. I lost sight of the horizon of truth amid the mire of falsehoods. I was complicit in this nonsense. I would tell the newly diagnosed that they would be just fine. I substituted hope where I should have spoken the truth.

But hope is surely our only positive I hear you say. Without hope we are lost. I would disagree. We are certainly a different place. Hope has two sides and you flip the coin accordingly. The other side of the coin is hype. The building of false hopes by vested interests. Miracle cures, stem cell parodies and so on. In my opinion I would rather have no hope have my inflated hopes dashed. Follow the science, keep a sense of perspective. Hope if you must. But don’t invest your hope. The stock market of hopes is a dangerous place.

You may take exception to my conclusion if you wish. But I believe firmly that a grasp of the science is important. Read, learn, distinguish between real science and pseudoscience. If it looks too good to be true it almost certainly is.

There will be a cure for Parkinson’s. Of that I am sure. But don’t ask me to put a five year timeframe on that. Only marketing executives and junior doctors too inexperienced to know better. You wouldn’t necessarily want these guys messing with your dopamine. Stick to the science because that’s where salvation will come from.