The Ring

I have a friend who is about to embark on the journey of a lifetime, an epic I started back in 1974 and have yet to complete. It is a journey of many levels and depths. It is a journey of elements – earth, air, fire and water – brought into conflict with each other. It is a political journey, the clash of different ideologies. It is a journey on the edge between good and evil, morality and hedonism, truth and lies. It is a journey of philosophy, ideology and rhetoric, of Nietzsche and Schopenhauer. Above all this is a human journey, the maelstrom of love, hate, jealousy, betrayal, forgiveness and understanding. And this is a journey for our time, no less relevant today than at its world premiere in a sleepy Bavarian town 145 years ago. I’m talking, of course, about that enormous operatic tetralogy Richard Wagner’s Der Ring des Nibelungen.

I have done my best to prepare her, to point out the staging posts along the journey, the sights and sounds (above all, sounds) to be expected, the people she will meet along the way, who to trust and who to avoid. But in the end, nothing prepares you for the experience. And if you are lucky, the experience will be transformational.

You can enjoy The Ring at many levels and it doesn’t hurt to see it simply as one of the Norse sagas, the story of men and gods, of dragons, giants and dwarves. A Ring of drama, action, heroism and magic. There is plenty to entertain at this ‘entry’ level.

Or maybe, for you, The Ring is a huge sprawling transgenerational love story. And make no mistake, The Ring is a love story in physical, metaphysical and sentimental ways. The Ring is a story of unrequited love, of incest, rape, domination and passion – the currency of tabloids and Victorian prurience.

The Ring is a political drama, the clash of totalitarian, administrative, political and extremist, the balance of idealism and pragmatism, of alliances built and broken, of militias, trust misplaced or endorsed. The Ring is the reality of Bosnia, Kosovo, Sierra Leone, a contemporary work of unsettling relevance.

The Ring is a Greco-Roman drama, narrated by the orchestra as Greek ‘chorus’, pregnant with symbolism and meaning, letting us into tiny secrets and explanations.

The Ring is an existential drama, a perennial battle of greed and generosity, parable for our time. The drama of The Ring is the drama of humanity.

And The Ring is a sound world, full of leitmotifs, tiny fragments of music swollen into torrents of orchestral sound. It is a drama of long architectural acts, of tiny shimmering passages, of mood and moment, a tsunami of sound.

My friend stands on the banks of the Rhine, waiting as that E flat sounds on the horns in the dark depths of the river. The world’s beginning, if you will. 15 hours in time as we know it, generations in opera time before the strings take the listener to redemption through love. Fasten your seatbelt.

I am on the one hand jealous of someone who still has that journey about to unfold in front of them. On the other, I feel responsible, taking her to the place where our travels part. Sure I can share what I learnt on the journey. But in the end, The Ring is a solo journey, a journey into the soul.

What will a cure for Parkinson’s look like?

I’ve had a bit of time to think about this. I was diagnosed with Parkinson’s, the young onset variety, in late 2006. So I’m well into my 15th year of cogitation on the matter. And if you count my research career beforehand, messing about with dopamine in the basal ganglia, you can probably add another 23 years to that. Not full-time you understand. Nobody can think about any issue with that intensity. But always simmering away somewhere at the back of the stove. Of course, having the condition myself focuses the mind wonderfully. What was previously simmering, comes to the boil quickly. There is nothing like the symptoms of Parkinson’s to help drive a sense of urgency into one’s own personal agenda even if not to the same degree to a wider caucus. An academic interest in the subject – and I hope my scientific and clinical colleagues will forgive me – doesn’t quite generate the same sense of urgency. I know – I’ve been there.

Over those 37 years, I’ve listened to, interviewed, challenged, agreed and disagreed with some of the finest thinkers on the subject. And a few klutzes as well, obviously. Useful tip: if you are speaking to people with Parkinson’s about Parkinson’s you will always be asked for your thoughts on a cure. Better have your answers ready. People with Parkinson’s expect clear thinking.

I would like to be able to say that I will present you here with clear thinking. That would probably be disingenuous or at the very least overambitious. Greater minds than I have pondered this without reaching any persuasive conclusion.

It is important above all to not allow one’s thinking to be clouded by emotion. We all want a cure. Yes we do so let’s quickly brush aside any conspiracy theory nonsense about the pharmaceutical industry’s preference for long-term treatments rather than quickfire cures. Obviously pharma is not innately philanthropic but that does not render it complicit in some global conspiracy. Let’s put that aside immediately. If you are unable to do so, well I suggest you go back to playing with those unicorns.

From day one post diagnosis, the clock is running and each day, week, month and year we register some further erosion of our abilities. Each day puts distance between our old pre-diagnosis selves and our current manifestation. By the same token each day brings that dark dot on the horizon a little bit closer, makes the heart beat a little bit quicker and renders our perceived need for a cure that tiny bit more pressing.

You might think that would drive the research programme with more force and energy. Show the scientists our raw selves and perhaps they might themselves be imbued with our urgency? You might think. Many of the best scientists do cultivate relationships with patients explicitly to understand the driving forces for people with Parkinson’s. In many respects they gain hugely from those patients in the same way that the patients feel empowered. But don’t expect the scientists to walk in the patients’ shoes. And nor should they.

The best scientists will have a deeper awareness, a more visceral grasp of the condition but always ultimately be one step removed from the full Parkinson’s experience (unless of course they contract Parkinson’s themselves – oops). We, as patients, can take them just so far along the road but no further.

And that’s the way it should be in my view. Scientists do not, in the final analysis, share our gnawing fears. And nor should they. They make decisions and interpretations in the light of cold hard numbers and statistics. Their decisions are certainly informed by their contact with patients but remain or should remain emotionally neutral. The best science is not driven by panic.

That’s a long way of saying that patient input is vital but should not cloud scientific judgement. No amount of desperation changes hard facts.

I wonder how many of us were told on diagnosis that old favourite “there will be a cure in 10 years”. The kind of glib blanket reassurance that so discredits the medical profession. The substitution of measured reason by tired platitude. Ultimately this does little but breed resentment as the 10 year mark approaches, placing a further barrier between patient and physician. To raise false hopes is every bit as damaging as crushing overoptimistic expectations. Neither help.

So what is the path to a cure? Is there one? Are we still fumbling our way through the undergrowth hoping to pick up the path? These things typically only become apparent with hindsight. We only understand the link or otherwise in 20:20 hindsight. Decisions and choices which at the time seemed capricious are rationalised as logical steps along that particular path. What was a wild stab in the dark is reconceptualised as the product of linear thought.

On the whole, science isn’t like that. But it’s difficult to budget for serendipity. Science is always willing prey to serendipity. As it should be.

What patients want to hear of course is that there is, in the pipeline, some drug or treatment that will permanently remove their symptoms. A simple definition of cure. Do I believe in such a simple definition? No, I don’t think I do. If we regard three steps as being the sequence of events towards a cure – slow, stop and reverse the pathology – we currently stand at the “slow” stage. There are reasonably plentiful indications that we can make a difference at this stage. Stopping the progression of Parkinson’s is an amplification of that. Reversal however involves a whole different sway of biochemical processes. It is not simply a reversal of neurodegeneration. It will require rebuilding the neuronal architecture as much as patching up faulty biochemistry. The paths of degeneration and regeneration are not mirror images. Regeneration will be a much tougher nut to crack.

The overwhelming problem with Parkinson’s, and a thorn in the side of every research endeavour, is the extent to which the pathology has progressed before it translates into symptomatology. We lose more than 80% of our dopaminergic neurones before we even show the slightest finger tremble. By any reckoning this is stacking the odds against us. If neurodegeneration is holding all the aces, how can we intervene and successfully expect to be able to reverse that damage?

The answer lies in biomarkers in general and early presymptomatic markers of Parkinson’s in particular. We need to know who is going to develop Parkinson’s before they do so. This is the incentive to develop drugs that will slow progress or even stop it. Let’s focus our efforts on finding those predictive markers and mass screening. I think there is every reason to hope that we can, if we catch it early enough, prevent it developing into full-blown Parkinson’s.

In other words, I think the elimination of Parkinson’s is going to come less from treatment of those already afflicted than the prevention of its occurrence. In the same way that we have eliminated conditions like smallpox not by the development of novel therapeutics but by its prevention. We will beat Parkinson’s by its prevention. Screening with reliable biomarkers, alongside the development of drugs to slow or stop progression will, over the course of a generation, eliminate Parkinson’s.

So where does this leave those already afflicted? Well certainly it’s not the solution that might be wanted but it’s fair to say that development of neuroprotective agents will benefit those already diagnosed as well as those who will be. We know so much more now about the pathway to neurodegeneration that “slow” and “stop” are parts of the usable vocabulary of Parkinson’s, not science fiction. Much has been spoken of the so-called oncoming Parkinson’s pandemic. Indubitably that will provide an impetus for research into prevention.

What of my own Parkinson’s? After all I’ve had its more than 10 years. Do I expect a cure? Truthfully, I do not expect to see a cure for myself in the course of my lifetime. Does that make me downhearted or resigned? No, it doesn’t. Because I know that the same impetus to develop neuroprotective agents in combination with a greater understanding of the presymptomatic biomarkers will benefit my generation as well. I may not live to see a cure but I will live to see benefit (touch wood). And I will know that, in whatever tiny little way, I played my part. That keeps me going.

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Karfreitagszauber

People who know me well know that my fondness for Wagner is limitless. I have multiple recordings of each of the great Wagner operas and when you consider that each averages about 3 to4 hours in length and therefore 4 to 5 CDs each, this amounts to quite a considerable outlay. The other day I mentally totted up how much I have spent on Wagner – it’s four in the morning, what else is there to do – and let’s just say it would have funded a pretty decent family holiday in Australia or a modest sports car. Or famine relief in Africa. It would probably have gone a fair distance towards putting a man on Mars.

Put like that the expenditure seems extravagant. My father questioned whether I needed one recording of Der Ring des Nibelungen let alone a plurality. I remember as eyes rolling heavenward when I let slip that I had bought a second recording of the Ring (Karajan) in addition to my much worn copy of Solti’s landmark recording from the 1960s. Indeed many of my friends were askance even at that, costing as it did £50 give or take a shilling, back in 1971. And £50 was quite a lot of money then. To shell out that kind of moolah on music by Wagner was evidence of clear insanity. It put me in the same psychological bracket as Hitler. At least in my friends eyes.

But I should like to go on record as saying that, no matter how passionate I am about Wagner I have never felt the need to goose step into Poland or to annex the Sudetenland. Besides Hitler’s favourite Wagner opera was Rienzi so his judgement was flawed anyway. Rienzi I ask you. What a twat.

My father believed that Wagner was best in the parts where the people weren’t singing. In other words in the overtures, preludes and finales, those glorious bits where the orchestra blazes away, brass rasping, strings shimmering and woodwinds struggling to be heard. That was my father’s idea of Wagner – bleeding chunks excised from the mother work. And of course there is plenty of Wagner to fit that bill.

All my attempts to make Wagner accessible to him fell on stony ground. Goodall’s recording of the Ring, sung in English, was just the ticket, I thought, to immerse him in the drama. He listened conscientiously, gradually began to fidget and eventually asked me to turn it down which, as we all know, is the polite way of saying turn it off. “I don’t mind what language it’s sung in” he said “as long as it’s one I don’t understand”. Case closed.

Mercifully he went to his grave largely oblivious of the extent of my Wagner habit. I had long since stopped telling him each time I bought a new recording. Rolling eyes, and a look at benign indulgence gradually gave way to outright incomprehension. And at that stage I had only added Furtwangler’s live recording from La Scala in 1950. A stellar cast, unachievable today, led by Kirsten Flagstad trying to make themselves heard over the notoriously rude Italian audience. With the incessant coughing – it was obviously recorded during a tuberculosis epidemic – and I could begin to see my father’s point.

Gradually over time, and don’t forget I’ve been collecting Wagner for nearly 50 years, I have added Rings by Knappertsbusch, Goodall, Haitink, Barenboim, Bohm, Janowski, Kempe and heaven knows who else. A total of 26 different recordings, each on average 14 CDs. When I put it down on paper like that, I can’t quite believe it myself. Perhaps it’s time I turn up to a session at Wagnerholics Anonymous. “I’m Jon Stamford and I’m a Wagnerholic”. There, I did it. They say admitting the problem is the first step on the road to cure.

But I don’t want to be cured. And I certainly don’t expect to be. Especially today, Good Friday. With a significant part of its drama set on Good Friday, there is only one opera for today’s listening/viewing. Parsifal. Wagner’s final opera and one in which even hesitated to call it an opera it was a Buhnenweihfestspiel, or in plain English, “a festival play for the consecration of a stage”. Wagner was never good on plain English (or plain German for that matter). Three acts and a mere four hours in length one critic once described it as “the kind of music where you sit down in the opera house at 6 PM, listen to 4 hours of music, then look at your watch and see it’s only 6:15 PM”. But that’s just rude although I will concede that it is one of Wagner is more static operas. I prefer to think of it as majestic rather than bombastic, measured rather than dragging.

It took me a long time to come to Parsifal. I already had multiple recordings of many of the other Wagner operas and I knew, or at least I thought I knew, what to expect from Parsifal but somehow I put off buying a recording for ages. I think it was a tacit acceptance that, beyond Parsifal, there was nothing else. It was like the best novel imaginable. You don’t want to read that final chapter because then the stories in the past tense and there is nothing further to look forward to. Same with Parsifal. I don’t mean “nothing further to look forward to” in a morbid sense. Get a grip – at the end of the day it’s just music. But when I did finally steel myself to buying Solti’s sublime 1973 recording, I immediately realised that this was not the ending of the journey but the beginning of another.

So today I have a tough choice – 29 separate recordings of Parsifal and only 24 hours in the day. Which one gets the nod?