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.

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.