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.

Sex and food

Yes I thought that will get your attention.

I’ve come to realise that most wildlife photography is fundamentally about food and sex. No, I don’t mean breakfast in bed or offering the last of the After Eight to the wife before testing the bed springs to destruction. Wildlife photography calls for extraordinary patience and stoicism from its practitioners. Sometimes filming in hostile environments simply in order to make a particular point may be essential to illustrate a particular argument. Sometimes a given shot presents itself on a platter more or less. Sometimes in the case of wildlife literally so. But mostly

Every year, my elder daughter and I visit the Wildlife Photographer of the Year Exhibition at the Natural History Museum. It’s become a habit. The judges, some half-dozen photographers, biologists and researchers are, every year, tasked with sifting more than 30,000 photographs in 16 categories, everything from the sex life of Southern Right Whales (believe me, if you were a diver, you would not wish to be caught in the middle of that) to animals eating each other.

Whether we like it or not, many animals eat other animals, in many cases while still alive. The Yucatan rat snake devouring a bat (Fernando Constantino Martinez Belmar) is sufficient to put you off your lunch. Equally, the battle between the grizzly bears and sockeye salmon seems unequal with such vividly red fish (Adam Rice). Nature seems to have screwed up here. Obviously the magnificent crimson helps to attract a mate and comes in handy further up the stream. But it also makes you a very attractive seafood platter as far as the bears are concerned. Far be it from me to question the Almighty’s plans but I can’t help thinking that staying a murky sort of khaki colour whilst passing the bears and then changing into your cardinal costume would be a better gig. You obviously make a much less attractive suitor when missing a head for instance. But then I suppose we wouldn’t have bears since the salmon are their main diet.

Bears are naturally inquisitive, polar bears particularly so. Dmitri Koth’s image of a polar bear gazing out of a derelict building’s window with a sort of watching-the-world-though-by expression makes him look particularly cuddly and not in any respect the murderous apex predator he actually is. If you want cuddly, Douglas Kimesy’s lockdown adoption of the wombats fits the bill nicely.

All of animal life is there, from intimate little moments to big broad brush commentaries on deforestation or sweeping vistas of wildebeest on migration. If I’m honest, I am not crazy about bugs, even very colourful bugs. Same goes for the bizarre underwater spiders and jellyfish. Very pretty, lots of colours, really not my thing.

Some pictures made me angry. A Brydes whale being choked by discarded fishing net (Judith van der Griendt) or a spectacled bear puzzled at his diminished environment (Daniel Mideros) some were somehow redeeming. My personal favourite was of a 13 year old mountain gorilla,Ndakasi, dying peacefully of a virus in a park ranger’s arms.

Perhaps most remarkable are the photographs taken by children, some 10 years and younger. And often with spectacularly expensive kit. It probably says more about my innate cynicism that makes me question the authenticity of such pictures. Put another way, who set up the shot? Who pressed the shutter. Or perhaps it’s just jealousy of such talent. But I can’t help feeling that the parents of Amaya Shah (close-up picture of two male lions) were somewhat abrogating their responsibilities in allowing Amaya within only a few metres of the lions, however cuddly they appeared. Apex predators. My mother would shoo away small terriers in the street, let alone lions. And Jack Russells are not apex predators. Not by a long chalk.

Living and loving

The end of one year and the start of another are usually all the stimulus I require to rattle off a motivational piece for the forthcoming year, summarising our hopes and fears and offering some kind of action plan for the New Year.

I might even share a few resolutions with you, idle baubles of self esteem. I could perhaps tell you that I plan to lose weight although, having heard this every single year for the last decade so, I imagine this has a pretty hollow ring. I adore my hobbies – glassmaking, photography, writing, genealogy and crafts generally – and like to find time for each. Alas this means spreading myself too thinly to achieve any kind of excellence in any. I am ultimately a jack of all trades and master of none. I make glass in bright colours, vivid and sometimes beautiful pieces, often kiln-formed or embellished. But nothing that this stands up against the work of my friends in that mighty class of 2003. Cathy, Ray and Lesley – these are the genuine article, the real McCoy. To have exhibited once with them was the highlight of my glass endeavours.

In many ways, photography has served as a substitute for glassmaking, becoming my preferred outlet for my fomenting creativity. I even had the hubris to publish a book of my favourite snaps, along with this descriptions and anecdotes that made it (erroneously, mind) seem like a top end gallery catalogue and not the overcoloured and gaudy offering it was. So yes, in answer to your unasked (and probably unthought) question, I can take decent photographs but there are many better.

I registered for two adult Ed courses this year. The first, on basic pottery techniques, was so dull and uninteresting I never returned after the first session. The class consisted of a mixture of bored housewives and strident tattooed harridans with “Fuck Off” T-shirts and battle fatigue camouflage trousers. It wasn’t for me.

The photography class was cancelled before I had the chance to walk out. A general lack of interest I gather.

Of course joining adult education courses is one route to finding that “soulmate”, marginally less cringingly awful than Internet dating – I’ve got to the stage where I can read the other party’s disappointment before even reaching that embarrassing peck on the cheek or firm handshake decision.

It turns out that the world is not populated with statuesque, raven haired beauties of sapiosexual disposition. And in such that are, they mainly seek those of equivalent intellect and not someone whose prize boast is the possession of his own teeth (mostly). I am obviously not over egging the pudding. On the single occasion this last year when, fuelled by a cocktail of Sinemet and strong Belgian lager, I actually asked a girl out – a beautiful Italian neurologist – such, her dismissal was so crushing, flagging up the admittedly unanswerable issue of my age (around double that of hers). My younger daughter even helped douse the flames of ardour by casually dismissing said lady as “way out of your league dad”.

We are born fools and die fools. It’s only that bit in the middle that separates us all. I think that’s probably why I write. When I write, I can create a world, or a person, more perfect. I often don’t. Even when holding the creative tiller, I find the path of self-destruction pulls me nearer. – plus ca change,,,

My vestigial cricket career is now at an end. Battery pack in chest and electrodes in brain put paid to that. Now I am a member of the Bayham and Lamberhurst Bowls club. I have the shirt, trousers and a set of woods. And a new bunch of friends, a genteel group who are as encouraging as one could hope to meet. Ron, Jo, Roy, Kevin, Ian and more Johns than you could shake a finger at. What draws me to bowls? I think it’s the pace of the game (that’s low not fast), the precision and the relative lack of crowd violence and hooliganism. You don’t get a lot of that at a bowls match

We are living in a couple world. We singletons are the object of derision and/or pity, neither very attractive. So yes, I shall continue to write, make glass, write songs, take photos and what have you. It fills the days. And, incredibly at age 65 I flatter myself that I still have something left in the tank, something still to give.

A month ago I had a bad car crash, wrote off the Jag and thankfully missed everybody else. Nobody was hurt. On the other hand, the destruction amounted to a topiary fence, lock-up garage, telegraph pole and police surveillance camera. The lady who helped extract me from the wreckage said “you have one hell of a guardian angel!” Even the police officer said I should be dead. I think it was an opinion not a preference he was expressing…

So, if you’ll forgive me, I don’t plan on tough challenging resolutions for the New Year. I shall keep them simple:

1) try to stay alive.
2) try to find a nice companion to share that time (and they don’t even have to be raven haired goddesses)
3) try not to kill other people.

I don’t think that’s setting the bar too high.

Okay that’s probably enough vague ramblings. Feel free to quote this drivel back to me next year when my primary achievement will doubtless be watching four hours of daytime television each day. Please God, no.