Signing off

For the last seventeen years I have had Parkinson’s (PD). Yes, I know I probably had it before diagnosis. It’s not a competition. There are no yardsticks to compare each other’s suffering. Simple fact – some get it worse than others. I consider myself one of the luckier ones. But it has been one of the enduring agonies of this condition that I have watched friends fall by the wayside. The journey is littered with the lost, comrades in arms who drew a weaker hand than I. Few things are more heartbreaking than to see close friends tortured beyond repair, their voices fading into the long silence.

Some shade into darkness quicker than others. Some are tortured by the private agonies of dystonia, others dance to that ridiculous self-parody of walking that we call dyskinesia, forced to endure the cruel laughter and humiliation, ultimately too weary to explain to the disinterested. Even for those untouched by such vicissitudes, there are still further miseries in store.

Okay I have had some of these in moderation – by which I mean sufficient to recognise the symptoms but too little to gauge their current path or project a future trajectory. I fall into that category – I have the full range of symptoms, but expressed at a relatively low level such that, beyond a general low-level malaise, none of the symptoms of PD have taken top billing, nor even a starring role. Like I said, I feel lucky. I feel empathy, sympathy or whatever for those in the majority who suffer more than myself.

The last seventeen years of PD have yielded some eight books, loosely based around life with the condition, but often veering into less focused tracts on politics (sorry, I can’t apologise enough), music, philosophy and so on. Some of you bought my books and I thank you for that. Writing is, both at its best and worst, a lonely way to occupy yourself. Short of book signings, press releases, chat show interviews and so on it amounts to solitary aeons at the keyboard. Those sequinned soirees among the glitterati are the province of the JK Rowlings of this world, not hacks like myself. Anyone who was ever going to read my books has done so by now. They will also probably have noticed the same features of my writing, appearing like leitmotifs throughout. And there’s the rub. I have said everything I wanted to say, offered every crumb of advice I could conjure, and cracked every joke I know.

I could carry on, re-treading and re-purposing old ground for what may be a new audience. Not a bad way to spend my time. And, with a little effort, I could easily delude myself that this still represented a service to our PD community. Truth is it doesn’t.

For me, PD is a journey but not in the way you might think. It is no mere progression and intensification of symptoms, though those are a parallel path. No, the journey as such is the transformation of blind optimism into realism. The journey essentially of acceptance.

For many within the PD community, acceptance is a dirty word. I know plenty who might argue that acceptance amounts to an admission of defeat. I don’t see it that way. To my mind, acceptance is the realisation that I cannot change everything. Some things will be beyond my ability to alter, whether by healthy eating, medication, exercise and so on. Acceptance for me represents the acknowledgement that energy spent railing against the injustice of PD is not energy well spent. Fighting PD is sapping. In my book, acceptance is a redeployment of one’s resources where one can reasonably expect benefit. In the same way Russia burnt its cities ahead of the Wehrmacht’s approach, prepared to concede ground and better use the resources they had to preserve the country. So it is with PD. Don’t fight the battles you can’t win.

It has taken me some seventeen years to grasp this fundamental truth, to reach this personal nirvana. Acceptance is the path to survival not to defeat. I don’t want to ‘fight’, kicking and screaming against this unseen enemy. There are better ways of spending that energy.

I have written books, given lectures, been part of panels, workgroups and advisory boards. I’ve advocated till I’m blue in the face. I have been a neuroscientist, a researcher, writer and adviser. Sure, others have done more. But I have done all I can. And at the end of the day I’ve put in my shift. I’ve given all I had. And now I want to turn away from writing about PD. It’s time for younger men and women to spell out their agenda, to raise their banners and and to lead their armies.

This, such as it is, is my baton to pass on to you. Run. Run like the wind. There is a whole world out there. Life is the ultimate journey and we never pass the same way twice. Thank you for reading. My watch is ended.

Siegfried’s desk

It was a long tradition of my school, and probably elsewhere besides, to carve your initials into your desk. The especially brave would write their entire name. Obviously this is easier if you are James Bond rather than say Aristotle Fotheringay. Many of the desks were extremely old, with some of the set-up-and-beg examples dating from the turn-of-the-century. That’s the turn of the 18th into the 19th century. With comic good humour, these ancient specimens were largely bequeathed to New Block. Constructed of cast iron and British dark oak, they were the very model of Victorian inflexibility. Whereas modern desks amount to little more than a space to put your laptop, these Victorian behemoths, with grooved rest for quill and ink well, were designed to last as long as the Empire. And largely they did.

Many of the desks were so old that new inscriptions were made over existing handiwork. Some seemed to speak angrily, vicious carvings deep into the surface. Others barely ghosted the years at Marlborough, with timid diaphanous markings, delicate and effete scripture. When I was an inmate, sorry I mean pupil, there was a clear gender divide. I don’t recall Persephone or Camilla ever feeling the need to mark their presence. Nor can one imagine Kate Middleton, our future queen and Old Marlburienne, taking the compass point or dividers, the favoured means of inscription, to virgin oak. Inscribing ones desk was a male province alone. Some even dated their handiwork. Since the punishment for such inscriptions was often beating, this was ill considered.

Maybe it says something about our need to mark our passing. And many of those desks in New Block, inscribed by the future young officers of The Great War, were to be exactly that. Leaving school, 18 years old, freshfaced and innocent to Sandhurst and then on to the Somme, Passchendaele and Cambrai, as young lieutenants, to die a thousand different anonymous deaths on foreign soil in that most dehumanising conflict. Marlborough produced more than its fair share of war poets – Brooke and Sorley to name two – but none more famous and impactful than Siegfried Sassoon, author of, inter alia, Memoirs of an Infantry Officer.

Or perhaps I should say ‘infamous’. It was Sassoon’s published ‘A Soldier’s Declaration’ of August 1917 that raised a voice of protest against the continuation of the mechanised slaughter of Passchendaele and beyond. Leaked to the press and even read out in Parliament, it was enough to have Sassoon ‘sectioned’ in modern parlance and sent to Craiglochart War Hospital, a treatment centre for psychiatric and neuropsychiatric cases where he met fellow dissident Wilfred Owen.

But Sassoon, despite the heavy-handed approach of the British Army’s top brass, was taken seriously. He was no angry, inexperienced neophyte, no desk pilot shirking front line action, but the recipient, on 27th of July 1916, of the Military Cross and later even recommended for the Victoria Cross. A courageous and well respected officer.

For much of my third year at Marlborough, I sat, for Tuesday double Geography in NB2, at Sassoon’s former desk. Angry inch high letters, deep chiselled capitals, and his name in its entirety. No coy initials. No time wasted on needless truncations. SIEGFRIED SASSOON, bold as brass. But Sassoon, as was to become apparent soon enough in Flanders, was not the kind to hide.

At the time, it meant little to me – another former pupil at what was, for that year, my desk. The depth of Sassoon’s inscription making writing neatly in my exercise book over that bumpy rutted trench surface nigh on impossible.

Did I inscribe my initials? No. And therein lies the mark of the man. Sassoon – bold, courageous and outspoken. Stamford – timid, anxious and reticent.

CD or not CD…

I’ve discovered charity shops. Once dismissive thereof, my piteous pension propels me ever more inexorably to their doors. Last week alone I picked up a beautiful autumnal tweed jacket (bespoke no less), a snip at barely more than a tenner. I could probably have knocked them down a little but that seems to be missing the point of the charity shops.
But the real secret of charity shops is not the clothes available, but that quiet little corner where they keep the CDs for £1 each. This is the place to pick up those unwanted Christmas presents – less popular Beethoven symphonies, one-hit wonders with their “meditation” or “fantasia on a theme by another composer who couldn’t come up with a decent tune either”. Not to mention modern composers with titles like “obelisk 23” and “para-fern-aye lee-uh” by the Giorgio Malvolio string quintet on prepared instruments. No, those are not real pieces so don’t go googling them.

The way we listen to music has changed this over the last several decades. And I think that has everything to do with the medium. Radio, LP, CD or streaming. I was first properly aware of music in my mid to late teens, it was predominantly LPs that formed my main musical diet.. Eschewing the single as little more than a musical amuse bouche, we embraced the LP. And I think it was partly the ritualistic nature of playing LPs.

As university students, typically we would gather in somebody’s room to listen to the new Peter Gabriel, Tangerine Dream or King Crimson album. We made coffee and hastily took our seats, on the bed, chair but mostly floor. One of us would take out the disc from its sleeve and pass it, like a sommelier offering the cork of a wine bottle, to another. The LP would be briefly examined for scratches or imperfections or before being placed on the turntable. A gentle wipe with a velvet cloth was sufficient to clear the dust from the grooves, at which point the tonearm was gently lowered if not damped. Conversation stopped for 20 minutes, the only extramusical sounds being the slurping of coffee. We read the track listing, notes and information on the sleeve. That was always one of the great joys of LPs – the wealth of supplementary material, graphics and information generally. Gatefold sleeves were particularly wonderful. Brief discussion of side 1 before the procedure was repeated for the other side. More coffee, animated discussion, comparison and analysis. A new record was an event and enjoyed as such. We were serious students and talked of tracks not songs played by bands not groups. It was important to get the words right.

Music is of course, the food of love and lust. My girlfriend at the time was a fan of The Who, with posters of Pete Townshend playing at the Marquee in ’75 I think. I remember summer evenings (nominal revision sessions) watching the sunset over Solsbury Hill to the soundtrack of Discrete Music by Brian Eno. That I can remember it more than 40 years later is testament to the awesome power of music and one very sweet brunette (occasional redhead when she wanted to be). I still have the record.

As the years went by, we replaced our LPs with CDs, marvelling at the robustness and sound quality of the discs. One by one we replaced the old, now battered LPs with their CD equivalent. For brief moments we were transported back in time to those summer evenings. That is the power of music.

CDs are dying I’m told. People either stream or buy vinyl. What once was seen as the greatest asset of the CD – the music emerging from silence not the sound of snap crackle and pop – is not considered by some as a deficiency. If your music does not sound as if it was recorded in a Weetabix factory, you are somehow spiritually ersatz. You have no soul. The record shops sell LPs at eye watering prices to people with unkempt beards and comb over haircuts, hoping to once again recapture their youth through exorbitantly priced bootlegs of Bob Dylan at Glastonbury – or wherever.

Streaming, on the other hand is mainly the province of the young, faces red and purulent, cratered by acne, under virtual house arrest in their bedrooms, curtains drawn against the purifying power of sunlight. Even MP3 players are no longer the acme of the acne-riddled generation. Who would want any device however small and powerful (iPods hold about a squillion songs) when they need not. Even Apple finally gave up on the first series of iPod, for many years its techie flagship. But this is a generation that travels light, in musical terms at least. DJs aside (I wonder how many of the younger generation actually know what DJ stands for), the suitcases are empty of music. Just as well probably – they will need the space for skin lotions, potions, balms and salves to counter the pockmarked rampages with which they battle.

CDs on the other hand are terminally uncool I gather. Pulling out a CD from a purpose-built storage rack marks you out as the kind of person who can remember the Falklands. Not necessarily endorse, but certainly remember he says, quickly backtracking.

This is a straightforward four-way fight between LPs, CDs, radio and streaming. And the biggest fallacy lies in the notion that we (well, I) have anything to say in that process. Music always has been the province of the young. Whether we like it or not, music is marketed as a commodity, just like anything. And commodities dealers are young.

If however you are old, and I can’t escape the tale of the years, these are potentially bonanza years. The very same people who believe that CDs are dying, are emptying their racks of Mozart, Mahler, Mendelssohn and Messiaen. And as quickly as they are emptying their carrier bags at the counter of Oxfam, I am clearing those shelves.

The gaps in my music collection are being filled. In the last week I have bought Mozart’s Don Giovanni, Tchaikovsky’s Eugen Onegin, Villalobos complete piano concertos, Rachmaninov’s Vespers and a box set of Wagner preludes and overtures. For less than a tenner – that’s a tenner for all of them together. In my music collection, the CD is alive and kicking.

Long live the CD.

Second best

For more or less my whole life thus far I have wrestled with the notion of mediocrity. Now that would not have been quite so bad had it not been instilled in me from an early age that excellence was all that mattered. At my small local prep school, exams were a regular end-of-term ordeal. This wasn’t the kind of school which believed in competing against oneself or any such namby-pamby liberal nonsense. We competed against each other. Plain and simple. Our headmaster Hamilton H, reasoned that, in life itself, you competed against others not yourself. Life was a savage cockpit and you had better enter it prepared. Deeply unfashionable though these ideas became in the early 70s, he stuck to these principles resolutely.

We were examined in 10 subjects (English, maths, chemistry, biology, physics, Latin, French, geography, religious studies and history, as I recall) with scores of up to 100 in each subject, yielding an overall total out of 1000.

Looking back, this level of granularity beggars belief but, such as it was, it must also have been a colossal task for the teachers to produce such a penetrating yet different invigilation each term. In my class the spoils of victory, bragging rights or whatever were shared between three boys – Stephen H, Nigel A and myself. Other boys occasionally (and I mean occasionally) flickered into life on subjects close to their heart. I remember one boy whose father, unbeknownst to us worked in some kind of unspecified roving role for the foreign office in Africa. Predictably he excelled in geography. His classmates simply took this as an added step up in geography. None of us put two and two together to draw the obvious conclusion – that his dad was a spook. But, such rare anomalies aside, Stephen was by a clear margin the brightest, with a photographic memory to match. Nigel too was consistently knowledgeable across the board. And my flame had brief sputterings, enough to suggest strong potential. Almost invariably Stephen won the overall prize each year and it would be a battle for second between Nigel and myself. The gap between first and third could be as narrow as five marks (out of 1000!)

Each term, along with copies of my school report, I took home the exam results in a separate sealed envelope, to be handed directly to my father. He therefore knew the outcome before I did. Sometimes he would ask me to sit down with him, in silence, while he read the results before placing them back in the envelope, sometimes without comment. This of course, from my perspective, amounted to torture. But I think he was really doing little more than collect his thoughts for discussion at the dinner table. I mean, of course, nothing so grand as an actual dinner, merely the time point when my father finished the evening surgery and rejoined his family for food. If surgery dragged on late, buoyed by a procession of hypochondriacs, he would face the inevitable ‘burnt offering’, as he put it, with stoicism.

Nobody spoke until my father had pronounced on my exam results. Sometimes, and I came to realise that this had as much to do with the health status of his more cantankerous patients, he would be brief and usually encouraging. “Really coming along strongly in French” he would say. Or perhaps “maths is slipping back a bit don’t you think”. Never harsh and, if I’m honest, an accurate reflection of performance. Reading the above, It seems to me that I make my father out to be cold and detached. He was not. And his criticism of my performance in the exams was, accurate. He seemed to know those subjects in which I was treading water before I did. But of course, he was a man, who, when a boy, used to coming first.

At that time I was a keen supporter of the then mighty Leeds United. Although widely acknowledged to be the best team in the land at the time (around 1970 give or take a few), Leeds consistently finished second, somehow conjuring defeats from the jaws of victory. Famously knocked out of the FA cup in the 5th round by Colchester on 13th February 1971. Defeated by Sunderland and their goalkeeper’s heroics in the 1973 FA Cup final. That sort of thing. Actual titles were relatively few. Although doubtless unaware of my mirroring of Elland Road’s finest, it seemed to follow suit. Whilst Giles, Bremner and Hunter carried The Whites to the edge of the title, they seemed doomed always to be second best. And so it was for me. Term after term I improved, overtaking Nigel into consistent second place but somehow never scaling the heights of Stephen’s stellar performances. At the end of the year, prize-giving ended with Stephen weighed down by silverware. There were no trophies for second place. Nigel and I prayed there had been a counting error and that we would be declared victorious. I’m not sure really what life lessons we took from this – Stephen probably learnt that life was pretty cushy at the top. Nigel and I learned that there was no reward whatsoever for hard work if you didn’t translate that into being top of the form.

In the end, in the penultimate year before boarding school, I was awarded the English prize. The school, probably as bored as I with Stephen’s routine ‘Grand Slam’ of trophies, had somehow engineered the results in such a way that Stephen was not allowed to collect more than six cups, shields or plates, and therefore the runner-up, myself, was awarded the English prize for second place in that subject. Nigel picked up physics I think. Stephen was magnanimous nonetheless, accidentally dropping and denting one of the cups whilst offering me a congratulatory handshake. He hadn’t had to do that before and it is a measure of his social skills and upbringing that he did not need to be told how to be gracious.

I remember going home and drinking a small bitter shandy from the trophy at teatime (I was 10) along with a larger slice than usual of my aunt Kath’s legendary lemon meringue pie. Ah, the spoils of victory! At the end of the day, I went to sleep aglow with my ‘victory’.

Over the course of that summer, I learnt that Stephen’s dad had moved jobs, to somewhere in the Peak District. I never saw him again. His place was taken by another boy, a dentist’s son as I recall, bright and cheerful and with teeth to match. A keen sportsman as well. The school loved him. As did I, until the years exam results were published. There it was in black-and-white. Effortlessly, he had taken first place. And once more, after briefly remembering the shandy and lemon meringue pie, I was back in my rightful spot. Yes, you guessed it – second.

A year later I went on to boarding school and learnt a great deal more there. There I would have settled for second. But the boys who came to Marlborough were all firsts’ big fishes in their respective prep school crammers. Much lower than that and you didn’t get into the school. I learnt the most valuable lesson of all there – that mediocrity was a relative commodity. I was now mediocre. My dad, bless his soul, had simply been preparing me for the realisation of the greater truth. For every second place there was a first-place and a third-place. And if I didn’t find them, they would find me.

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.