World Parkinson’s Day/Week/Month… Whatever.

Every year we acknowledge World Parkinson’s Day/Week/Month in our own way. I deliberately eschew the words ‘celebrate’ or ‘commemorate’. Once more we draw attention to this irksome illness for the general public’s edification. We do our five-minute slots on radio and television, have our letters printed in the newspapers, run stalls at county fairs and so on. Each year we group together publicly, rattle tins and, all too transiently, prick the collective conscience, like some half-hearted freakshow. We hear the same well-meaning but flabby questions, give the same trite replies.

We remind the public that the problem hasn’t gone away. We haven’t gone away – well, actually many of us have done exactly that, our powers diminishing to that vanishing point of inaudibility. And this year of course we have had coronavirus to further entertain us as it scythes its way through the care homes.

Each year, we spend billions on research and care, we welcome thousands more to our reluctant community, attend support groups where we eat a ton of digestive biscuits, washed down with gallons of tea. We dust down our placards with the same old slogans, the same overused platitudes while we hope for some serendipitous discovery to deliver us from Parkinson’s. We proudly parade this year’s new initiative from the big charities, the latest ‘great white hope’ that will transform lives blighted by this illness. Each year we swear blood brotherhood/sisterhood, vow to stay in touch and talk about each year as the most inspirational yet. Come May, we’re out of steam and gladly put the placards away for another year.

Well it’s not good enough. I am fast coming up to 15 years with this condition and frankly I’ve had a bellyful. A bellyful of these symptoms, certainly. But a bellyful also of hollow promises, of being mollified and patronised. I’m tired of self congratulatory tokenism towards patients by people who should know better. I’m tired of ‘new initiatives’, bored with focus groups, working parties and roundtables. I want action. I want accountable action. I’m tired of research studies that merely confirm what is already known. Consolidating rather than progressing. Stale smoky inertia rather than the bracing lungfuls of momentum we were promised.

I want more. Much more than this. I don’t want to be rolled out for the benefit of the lay public, like some performing seal. I don’t want you to give me your annual radio sympathy slot for half an hour. You’re probably as bored as I am. I am tired of spin that makes a ‘breakthrough’ of every trivial finding. I’m tired of hype masquerading as hope. Do I sound cynical? Well, I’m tired of cynicism too.

Every time April comes round it seems, more viciously than ever, to be Eliot’s ‘cruellest month’, an indictment of the current unhappy state of Parkinson’s rather than a ringing endorsement of success. There is a limit to the number of people we can tell that a cure is ‘just round the corner’. It isn’t and we should make preparations accordingly.

I want to see a World Parkinson’s day/week/month where we paint the picture as it is. A period of brutal honesty not disconnected delusion. A period where hope is real not hype in disguise. A period where we strip away our vanities, recognise our failings, and stand to give account before our peers. A period where we say, with head bowed, “I didn’t do enough. I didn’t make enough of a difference”.

Yes, I mean you. I mean him, her and them. And I mean me. Above all I mean me.

For goodness sake let us try to be honest with ourselves and each other. This is an incurable neurodegenerative disease with all that entails. The sooner we embrace that uncomfortable fact, honestly and with eyes open, the sooner we can begin to make genuine progress. This isn’t Lala land. This is real. There are no unicorns.

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.