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.

Blog and be damned!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

Start making them now.