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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.

Dad’s back.

April is World Parkinson’s Month, in which we (people with Parkinson’s) try to raise awareness amongst the general population, the month in which we try to share our experiences to help you understand why we do what we do and why we are what we are.

Briefly, Parkinson’s is an incurable neurodegenerative illness affecting movement and a whole bundle of other physiology. That means it’s going to affect every part of body functioning, it’s going to get worse and there is nothing you can do to prevent that.

These facts are usually presented to patients along with their diagnosis. That’s a lot to take in, a lot to absorb in that brief consultation with your neurologist. It is commonly said that patients die with rather than of Parkinson’s. That’s not strictly true. Life expectancy is shorter with Parkinson’s, the extent to which it is shortened being determined by age of onset and symptom cluster. On the whole, you get about 16 years post diagnosis. And, without wishing to belabour the point, those 16 years will not probably be as much fun as they would otherwise have been.

That sounds, on the face of it, a grim proposition, with little in the way of prospects. That’s not entirely the case. Sure, it is degenerative and incurable. But it is possible nonetheless to slow the disease progression. Careful attention to diet, exercise and medication routine (yes, all the boring bits) can change the clinical picture substantially. Okay we can’t stop it in its tracks but we can slow down this symptomatic behemoth. Parkinson’s is all about time, about buying time. Buying time until a cure is found.

Around 18 months ago, my 16 years were up. I was, if you will, on borrowed time. We (that’s me, my neurologist, my Parkinson’s nurse and my family) had to make a decision. We could let nature take its course or force its hand. And after 16 years of Parkinson’s, you don’t have too many cards left to play.

My choices boiled down fundamentally to one – DBS. DBS stands for Deep Brain Stimulation and, when you know what it entails, you can see why it is always referred to by the acronym. In this procedure, thin wire electrodes are implanted deep below the surface of the brain (around about 2 inches) into, mostly, the subthalamic nucleus. Once in place, tiny pulses of electrical current reduce symptoms of Parkinson’s, some more than others.
Not a decision to take lightly. For many in the early stages of Parkinson’s, it is a bridge too far, a Rubicon most will not choose. After 16 years of symptoms, the situation is different. You can no longer hide. In my case, the choice was simple. I could either continue down the same largely certain path of neurodegeneration or I could take a stand. I could buy myself time.

DBS is not a cure. Let’s be clear on that. It buys you time, nothing more. Time to enjoy life, to help other people with Parkinson’s, to watch my children fulfil their potential, to become the people their best selves. All these things and more. Is it all a bed of roses? No. A small proportion of patients get no benefits from the procedure. Some (thankfully few) get worse. A tiny minority even pay for it with their lives, suffering a stroke as the electrodes penetrate deep into the brain. But for the large majority, it helps.

My surgery was conducted at the beginning of November 2021, at the height of the Covid pandemic. No visitors were allowed. There was no one to hold my hand, figuratively or otherwise.

My electrodes were switched on on 5 November, fireworks night in so many ways! The benefit was instant. Not huge but noticeable. My walking was better, my tremor largely absent and my balance reasonable. I took videos of myself walking up and down the ward and showed them to my children. My daughter burst into tears. “I can’t remember seeing you looking so well” she said, in one sentence justifying the entire procedure.

What more can I say? Dad’s back.

Those hidden charges

I bought some tickets for the cinema the other day. The bill was neatly itemised for me. The tickets themselves, at £22 each (I had upgraded from buying the standard seats to what they called premium) and, immediately below, in small script was a booking fee of £1 per ticket. So, since presumably the booking fee was unavoidable, I had in essence bought tickets at £23 each.

This kind of thing gets my goat. It was not clear upfront, unless embedded in the impenetrably small words, invisible on my laptop, that there would be a booking fee. It is not as though one can even decline to pay a booking fee. The tickets must be booked, therefore there is a booking fee. Presumably by the time you get to the screen allowing you to pay for the tickets, you are just so damn grateful that the thing hasn’t crashed before this point that you are happy to pay anything. But since booking the tickets as an integral part of, guess what, booking the tickets, why itemise it? This is an entirely specious charge. I want to buy tickets at £22. And I expect to pay £22. That sum is the agreed price not the start of a bidding war. If the tickets are really £23, tell me upfront. Don’t look to tack on a contribution to the staff Christmas party fund. Or whatever.

By the time we get to the next screen and its invitation to round that untidy £23 up to an elegant £25 by donating to their charity of choice, I am feeling decidedly uncharitable. Eventually, after many oaths, effing and blinding, I reach a point where I can tap in my credit card details and the tickets will be mine.

Well, not quite. The tickets are mine if I wish to receive them in electronic form on my notoriously unreliable iPhone. Should I, horror of horrors, want to receive a paper ticket, I will have to stump up the cost of printing and of course postage. In the light of previous exchanges, I am surprised not to be asked to cover insurance during the tickets’ mile and a half journey from cinema to my house.

Don’t get me wrong – I’m no cheapskate. I don’t calculate exactly but I do like some sort of idea at the back of my mind how much things will cost in advance. So this kind of thing just annoys me. It’s the same in restaurants. Most nowadays make the assumption that the service charge is includable in the reckoning. Yes, I know that the waiter is probably a destitute Romanian living out of bins and my service charge is his only source of income. But I’m afraid I’m old school. To my mind the service charge is voluntary, and reflecting exceptional attentiveness. Besides, I like to make a point of awarding it rather than having it assumed on my behalf. In restaurants with questionable policies on tips, particularly the allocation to individual waiters from a collective pool, it’s even more presumptive. I frequently like to make a quick calculation in my head and thrust a note or two into the hand of the waiter/waitress rather than surrender it to some common pool. Just me I guess.

The same goes for VAT. I love the way in which garages will quote the figure for a given piece of work without the VAT and then, almost as though it had slipped their mind, say something like “oh and there’s the VAT on top of that”. Gradually softening me up by degrees. “Oh and the fitting charge”. Seriously? A fitting charge? Isn’t that what the garage does?
Again, they have me over a barrel. Unless I want to be handed my car and the boot full of pieces of engine, I can do nothing. I have to pay. Usually goes something like this. “The turbomagneto valve electro hybrid thingamajig comes to £152.17p. With the VAT that’s £197.34p. Oh and there’s the fitting at £112.33p an hour, making a grand total of £4000 billion.” Or something like that. “Will that be cash or card?” Neither I think to myself.

When I owned Jaguars, they used to soften the blow by valeting the car for me. So when handed back after I paid the ransom (sorry, of course I mean bill) the car would be gleaming and beautiful even if their choice of air freshener made it smell like a New Orleans bordello.

All rant over now. It’s safe to come out.

Gary and The Beeb

To be truthful, the political views of football commentators leave me cold. In the same way, I imagine ex-neuroscientist’s opinions probably carry no more weight and yet this realisation does not stop me from commentating when I see fit.

Social media is now so widespread that anyone who is anybody and many who aren’t are happy to offer their opinions on matters why doesn’t their brief. In the same way that Richard Wagner, that most repulsive of anti-Semites, was able to produce music of incandescent beauty, the question becomes one of context.

Gary Lineker’s comments were not expressed as I understand it in the context of his day job as football presenter/commentator but in a series of tweets criticising the government’s approach to immigration in general and boat people in particular. Had he turned a conversation on Manchester United’s comically leaky defence last week from football to immigration, the case would have been simple. A clear breach of impartiality and the Beeb’s response would have been understandable. But by taking him to task over opinions expressed as a private individual is a different matter. Let’s not forget that anyone who reads his tweets has essentially ‘opted in’. If they don’t like what they read they can always unsubscribe. It’s that simple.

I do not get Gary’s tweets in my inbox because I have not subscribed. Nor do I subscribe to any anti-Semitic scribbles on Wagner. I simply listen to the music.

It’s essentially a question of demarcation. Is it possible to express an opinion as a private individual when you also hold a very public job? That is, in simple terms, the question asked. The BBC evidently feels that their contract with him, as a TV presenter, extends beyond that and encompasses his opinions expressed semi-publicly but outside the context of his day job.

I think this may ultimately set a dangerous precedent. Clamping down on Gary the football presenter, because of the opinions of Mr Lineker and his criticism of government policy, is dangerously stifling.

Let’s be clear here. The government’s proposed ways of dealing with the boat people and so on are, at the very least, insensitive and worse, bordering on overt cruelty I would think. To call them out for this seems reasonable. Remember here that Gary is not mobilising an army, calling for acts of terrorism or otherwise, preparing public rallies or otherwise inciting unrest. No, he sent a few tweets.

If we reach the point where we cannot criticise or offer an opinion, especially one counter to government policy, that would be a sad day for democracy.

The Drowned and the Saved

Last weekend was pretty intense, in some ways enriching and in other ways diminishing. Let me explain.

I grew up in a family where books were considered almost sacred objects, their acquisition a source of delight, their loss a bereavement. Both my parents came from what would then have been called working class families. Books were a luxury, with maximum value obtained by passing the books around the family. No sooner had one finished a book than it was passed on to the next child. Books were important. By sharing, everyone formed an opinion that they could then discuss. Books encouraged critical debate by the same means.

My father was probably the least broadly read, focusing his reading matter on the mainly factual, perhaps a hangover from his days at Cambridge as an undergraduate medical student where the fixation on fact over fiction remained the principal legacy of his alma mater. He was after all a medical student not a classicist. If you had to remember the cranial nerves via colourful mnemonics, it’s easy to imagine that there was no time or space left to fill with Aristotle, Socrates or Plato. I remember he once read Richard Gordon’s entire output in an afternoon. Having thus slaked his thirst for materia medica, he swiftly moved on to James Herriot, perhaps reasoning that veterinary medicine was at least still medicine, if he reasoned it out at all. Being a GP in Doncaster amounted to many largely thankless hours and my enduring memory, while I was of school age, was of a man, dog tired, asleep on the sofa. Not really of a reading man.

My mother on the other hand devoured books like a paperback piranha. Her tastes leaned towards the more romantic end of literature albeit with a fondness for books involving naval officers (my father was in the Navy when she had met him). She loved the Master and Commander series. Otherwise it was Maeve Binchy and suchlike.

Why is any of this relevant? Well, last weekend my three children were here. The plan was simple – to boldly go into those reaches of the attic where unwanted items lived, where aged footballs lay among the dust of decades. Many boxes were unopened having been transferred from our previous house to the present, around 30 years ago. The children’s battlecry, “If you haven’t opened the box in 30 years, it can go!”, although entirely understandable, needed a degree of tempering by myself. Mostly the contents of the boxes were uninteresting – odd bits of electronics, long dysfunctional hi-fi, and computers using operating systems no longer used. And of course the inevitable mixture of ‘artworks’ by the children. On the whole these works of art tended to be abstract rather than strictly representational. Impressionist so to speak.

We also discovered a great many books of every conceivable genre and detail. Pulp paperbacks sat cheek by jowl with the great works of English literature. Shakespeare? Obviously. But also others less obvious. “Cider with Rosie” by Laurie Lee, Salinger’s “The Catcher in the Rye” and Hemingway’s “a Farewell to Arms”. Great books by great authors, each in its own way a pinnacle of teenage angst, a battle of art and acne.

My eldest, taking me quietly aside, explained what was to happen. “Dad” she said “we have to get rid of these books”. While she sat me down to explain, my younger daughter was tiptoeing out of the building on armfuls of my prized books.

Suddenly, a delightful revisiting of our respective childhoods, uncovering buried treasure, had taken on the air of a Nazi book burning. I called a halt once I realised the indiscriminate nature of their process. Some supervision was absolutely essential once I realised the kids made no distinction between cheap insulation paperbacks and Hemingway first editions.

Books, even under the present Tory administration, a particularly Luddite regime, are not yet to be used as fuel. But gradually I began to realise that, if we were to fulfil our mission of clearing space in the attic, a great many books had to go. Like Oscar Schindler I could only save just so many. And for every one that was drowned, I tried to save one.

There is no foolproof way of applying any selection criteria. The human decision has to take priority. So with that in mind I pronounced yea or nay, like some Roman emperor, on the fates of several hundred books. My criteria were to the outside observer, capricious. I tried to retain walks that I thought I would possibly read (Brick Lane, Rites of Passage, The Bonfire of the Vanities) whilst being unable to throw away some tomes with, how shall I put it, sentimental associations. Retained under those criteria were the entire works of Isaac Bashevis Singer, aforementioned Hemingway and a first edition of The Spy Who Came in from the Cold.

I would like to say it was a job well done. But, in all honesty, I don’t know whether it was or not. A number of books made it out of the house without my explicit say-so. But I don’t really think of the books being lost. More a case of being adopted by new readers. My loss is Oxfam’s gain.

Blog and be damned!

Today’s blog is about, well, blogs. When I say blog, I am referring in this context at least to Parkinson’s related blogs. My own blog (www.jonstamford.com) could I suppose broadly be considered a Parkinson’s blog in the sense that its origins lie there even if it’s present format has somewhat drifted from its origins. But in the sense that it also distils my ethos about Parkinson’s, albeit infrequently, it should probably be considered within the broad envelope of this discussion.

I should also say that although I may refer to other bloggers and their approaches to blogging, I will not generally name names. This is not for any fear of lawyers (liticophobia?) but a desire not to needlessly hurt their feelings. Without also sinking into the mire of woke consciousness, be aware that I may also change their gender if I feel their identity is still too obvious.

I asked my eldest the other day about when I had started blogging. “Roundabout the late Cretaceous period” was her response. Evidently I am a true dinosaur. This will come as no surprise to anyone who knows me well. But after a little bit of verbal jousting, we agreed it was around about 2010. Having been diagnosed in 2006, I had some four years of experience to draw upon. And draw upon it I did, originally in a blog on the Wobbly Williams website, moving in the following year I think to my own free website and then later still on to a proper grown-up website where I could throw in all sorts of other dimensions – music, photography, video, blah blah blah.

Why did I start a blog? Well, it was largely the result of facing a very persuasive Bryn Williams, he being of a  wobbly nature (oh gosh I didn’t really disguise his identity did I?). Bryn is of course a lawyer and, by nature, extremely persuasive. After a brief session talking to him or, in actual fact, submitting to his hyperbole and flattery of my writing skills, I was persuaded that the world needed to hear from me. I don’t suppose for one second that it actually did but it was fun while it lasted. And Bryn has always been a beacon for many in the Parkinson world (am I returning the flattery here? It looks like it doesn’t it).

At first I simply wrote about my day-to-day experiences and how Parkinson’s had pulled the rug from under them. After a while I began to receive emails and letters even from people who generally said they enjoyed reading my thoughts and admired the positivity. I was seen in some ways as making light of the condition, and not submitting willingly to its many vicissitudes. And I think also because my background was science, specifically neuroscience and most specifically Parkinson’s, I was perhaps seen as a “go to” person if you wanted a bit of science scattered around your symptoms.

Even the most cursory examination of the blogosphere reveals the many different styles, objectives and execution. One, by a friend in Hungary let’s say, is irrepressibly optimistic, finding laughter and humour in the most insane moments. Another is a devout believer in the church of laughter, happy to cite scientific research that “proves” laughter, even the very physical act of laughing, is enough to alleviate dyskinesias. I can’t help feeling it’s not that simple. Rats don’t laugh much and they don’t get Parkinson’s. Hyenas might be a better model. Especially so for scientists with a death wish. My feeling is that hyenas would be Benny Hill fans rather than appreciating more Pythonesque humour. But laughter is just an exemplar. We all have something, some little trick of the light that benefits us and us alone. This of course is the “n of 1” trial approach. But that’s another subject for another day, beyond the scope of this blog.

Leaving aside the scientific tonality or otherwise of each blog, the principal differentiator is positivity or negativity. What is appropriate?

This is the elephant in the room and, in many ways, also the conundrum with which we wrestle daily. We need money for research into treatments for Parkinson’s. That’s obvious. It’s also obvious that we will raise much more money if we portray the condition at its most horrible, crippling and gruesome.

At the same time, we are keen, as a community, and especially for the management of newbies, to convey the message that you can live with this condition and live a fulfilling life. perhaps not your pre-diagnosis definition of “fulfilling” but nonetheless worthwhile. How do we protect them whilst flipping the coin over reveals a much uglier head. I’ve been blogging for a dozen years and still haven’t found the answer to that one. Answers on a postcard please.

I have a good friend in Andorra (could be, although the odds are against it) who is a Whack-a-Mole champion in his country. He is a strong advocate for single sport activity as a means of ensuring good long-term outcomes. Specifically Whack-a-Mole .

A couple of years back the inspirational Norwegian filmmaker Anders Leines and I made a short series of small videos about subjects we felt were difficult to tackle and poorly addressed by our physicians. Poorly explained by them and poorly understood by us. Essentially the direct result of embarrassment on both parties I suspect. We called this series The Dark Side of Parkinson’s. We opened up a message board. The messages we received were very largely positive towards the videos in the sense that we had apparently burst a dam, along the lines of “I’m not the only one then who suffers from this” and “now I feel I can discuss it with my doctor.”

We agonised over whether we should publish or withhold the videos. Would they do more harm than good? Were they balanced? In the end, we had to make a very stark choice. We chose to publish, with each video carrying a reference where further information could be sought.

The responses, as I said, were extremely positive about content. That’s not to say that support was universal. There were certainly some who felt we had done a disservice to the community. I don’t agree necessarily but I do certainly endorse their right to an opinion on the matter.

I probably take, especially these days, what I would consider to be a more realistic appraisal although I happily concede that my “realistic” may map very closely to someone else’s “pessimistic”. My own feeling is that it is easier to justify blind optimism than more downbeat tones. We don’t seem to have to justify happiness as much as despondency.

And there is of course also the issue of readability. From my own experience, although I vouch for the gritty realism of my own approach, I still find that persistently negative blogs do not, unless very well written (such as that by a fellow academic with connections to the low countries) hold my attention.

If I had to summarise, I have reservations about relentless positivity, like a rictus smile. It just doesn’t ring true and obviously even less so as time passes. It takes a very particular skillset to maintain such a façade. The most positive blogs are typically written by patients within the first few years of diagnosis, that phoney war where the drugs seem to work and we delude ourselves that we are somehow different and we can handle it.

Tosh.

The progression of Parkinson’s is hard to arrest and even harder to reverse. Painting rosy pictures of Parkinson’s patients playing racket sports and the like does not help. In fact I feel that setting impossible standards is counter-productive. It can induce a sense of failure. Very few Parkies can run marathons, swim triathlons and so on. Mostly we shuffle to the shops. It is difficult to achieve the right tone in such blogs. Achievement creates respect up to a point. Beyond that point it starts to reek of triumphalism, simultaneously crashing the spirit. For the most part I’m sure it’s unintentional and has been one or two heroes, making their handicaps a source of inspiration. But for others it’s the desperation such efforts can invoke that worries me.

Dismiss it if you will. I am no athlete and you could legitimately decry my observations as the ramblings of a sofa dweller. Perhaps you’re right and my more balanced appraisal (read pessimistic if you wish) is the one to avoid. Patients will work things out for themselves in the fullness of time. Some need more help than others. For some patients, a sharp dose of reality will derail the train. . But in the end the journey will always have rocky elements and it will be hard to hold the line if you don’t have the mental resources to do so. Listen to fellow patients, absorb their experience and prepare your own to help you best equip for the journey. Engage with your Parkinson’s because, as sure as night follows day, it is going to engage with you.

My own feeling, and perhaps it’s the scientist in me still, is that the greater breadth of information available to the patient facilitates more poised and reasoned decision making during the course of the illness. And yes, there will be a lot of that. Decisions, that is.

Start making them now.

Sex and food

Yes I thought that will get your attention.

I’ve come to realise that most wildlife photography is fundamentally about food and sex. No, I don’t mean breakfast in bed or offering the last of the After Eight to the wife before testing the bed springs to destruction. Wildlife photography calls for extraordinary patience and stoicism from its practitioners. Sometimes filming in hostile environments simply in order to make a particular point may be essential to illustrate a particular argument. Sometimes a given shot presents itself on a platter more or less. Sometimes in the case of wildlife literally so. But mostly

Every year, my elder daughter and I visit the Wildlife Photographer of the Year Exhibition at the Natural History Museum. It’s become a habit. The judges, some half-dozen photographers, biologists and researchers are, every year, tasked with sifting more than 30,000 photographs in 16 categories, everything from the sex life of Southern Right Whales (believe me, if you were a diver, you would not wish to be caught in the middle of that) to animals eating each other.

Whether we like it or not, many animals eat other animals, in many cases while still alive. The Yucatan rat snake devouring a bat (Fernando Constantino Martinez Belmar) is sufficient to put you off your lunch. Equally, the battle between the grizzly bears and sockeye salmon seems unequal with such vividly red fish (Adam Rice). Nature seems to have screwed up here. Obviously the magnificent crimson helps to attract a mate and comes in handy further up the stream. But it also makes you a very attractive seafood platter as far as the bears are concerned. Far be it from me to question the Almighty’s plans but I can’t help thinking that staying a murky sort of khaki colour whilst passing the bears and then changing into your cardinal costume would be a better gig. You obviously make a much less attractive suitor when missing a head for instance. But then I suppose we wouldn’t have bears since the salmon are their main diet.

Bears are naturally inquisitive, polar bears particularly so. Dmitri Koth’s image of a polar bear gazing out of a derelict building’s window with a sort of watching-the-world-though-by expression makes him look particularly cuddly and not in any respect the murderous apex predator he actually is. If you want cuddly, Douglas Kimesy’s lockdown adoption of the wombats fits the bill nicely.

All of animal life is there, from intimate little moments to big broad brush commentaries on deforestation or sweeping vistas of wildebeest on migration. If I’m honest, I am not crazy about bugs, even very colourful bugs. Same goes for the bizarre underwater spiders and jellyfish. Very pretty, lots of colours, really not my thing.

Some pictures made me angry. A Brydes whale being choked by discarded fishing net (Judith van der Griendt) or a spectacled bear puzzled at his diminished environment (Daniel Mideros) some were somehow redeeming. My personal favourite was of a 13 year old mountain gorilla,Ndakasi, dying peacefully of a virus in a park ranger’s arms.

Perhaps most remarkable are the photographs taken by children, some 10 years and younger. And often with spectacularly expensive kit. It probably says more about my innate cynicism that makes me question the authenticity of such pictures. Put another way, who set up the shot? Who pressed the shutter. Or perhaps it’s just jealousy of such talent. But I can’t help feeling that the parents of Amaya Shah (close-up picture of two male lions) were somewhat abrogating their responsibilities in allowing Amaya within only a few metres of the lions, however cuddly they appeared. Apex predators. My mother would shoo away small terriers in the street, let alone lions. And Jack Russells are not apex predators. Not by a long chalk.