Month: April 2022

I’ve always been one of those nervy writers. As the saying goes “you’re only as good as your last piece (of writing)”. Something like that anyway. These kind of anxieties affect us all. Even the greats – Hemingway, Faulkner, Twain and that’s just the Americans. If your last piece happens to be “The Old Man and the Sea” you’re home and dry. Well when I say home and dry I suppose what I really mean is “soaked to the skin and reeking of decaying tuna fish. On the other hand I’m sure the Nobel prize for literature probably softened that minor personal inconvenience. I’d be happy to dig into the tuna mayo sarnies if I thought this act would be a surefire route to literature superstardom.

The basic truth however is that I am not wrestling with giants, not tangling with titans nor even scrapping with something beginning with S. I’ll get back to that. Or probably won’t. Who cares.

I like writing. So I, by inference, dislike those periods in which the words do not somehow percolate to the surface. And the better the piece, the longer the subsequent interval and the greater the likelihood of the resultant piece of writing being stymied by even so moderate a pause.

“I feel a bit like Rocky these days, climbing into the ring for one last hurrah. The tools, if I’m honest, are dwindling, any power of writing I possess gradually fading in intensity. I forget people’s names, I forget that I have forgotten people’s names even.

Let me give you an example. Being Saturday I went up to the cricket ground to watch a little sport and to catch up on my cricket friends and, once more, to subtly mingle my brief batting excursions with the more far-reaching batting travails of, well, pretty much anybody else. That’s the great thing about cricket and I’ll come back to it later – there are always stories.

I watched about half the match, mostly our team batting. Then, a brief coke in the pub and off to do my weekly shop. Then back to the pub around 7 to see how the other game (away) had gone. I asked one lad (we will call him T) how the other match had gone. He seemed bewildered. “I don’t know”. Then he alerted me that, not only was he not playing in the other game but that I had, but an hour or so earlier, witnessed his innings as opener. I think I made some attempt at humour along the lines of the November neurosurgery evidently had removed all but a thin veneer of grey matter and that the electrodes were failing in their duty.

To be honest it was embarrassing. For me and for T. And it’s happening more and more (the memory lapses that is, not the feeble cover-up jokes).

The column this month was meant to introduce what I am hoping will be a regular blog throughout the summer, detailing from the sidelines the exploits of our illustrious teams in their 75th anniversary season.

“What name will you use?” asked Jay. “My own” I said. “Why?” It took a moment or so to realise he was talking about the name for the column rather than the complex and needless pseudonym I might have been considering. Cyborgius Gruntfuttock perhaps. Or Yorick C. Manatee. A raised eyebrow from Jacob made it clear I had better stop.

After a few more brief excursions into combinations ofnames, it became apparent that he was talking about the name of the report.

I said to him, it needs to combine a notion of gossip and suchlike. I told him the name and such justification. I tried to explain to him – combination of cricket (actually catching a ball) and tittle tattle news.

“Yes dad, I get it”. Rolling exasperated eyes from Jacob.

“Caught at gully”. Did you see what I did there?

It’s that time of year once again when we, self christened Parkinson’s advocates, write a little something, toss off a bagatelle, to inspire and enthuse the readers. We pick our best brave face, drug ourselves up to the gunwales and pick up our banners and tins, ready to ‘raise awareness’. To this day I have not heard a convincing definition of what that is.

This year seems different. This year the world seems to have taken a darker turn. Fires burn in the Amazon, in the Rockies and in the Blue Mountains. Toxic smoke obscures the horizon. Polar bears swim desperately for land in the rising Arctic waters. From being a tender lover, gently lulling us to sleep in her arms, the weather is now angry, disdainful, tossing us like a wounded mouse between the cats paws. And everywhere there are evil people happy to exploit others, send overloaded boats across the channel in search of a new life in Britain only to drown within sight of land.

Elsewhere landscapes, sweeping vistas, or bucolic village scenes in the Ukraine are transformed into the charred backdrop of our nightmares. The acrid scent of burning human flesh among the unsanitary detritus of human misery. Ukrainian children needing chemotherapy that they will never receive in the hospital, now burnt to the ground, their deaths are certain as night follows day. What kind of person, what kind of bestiality allows these crimes to take place. Atrocity upon atrocity. Man debasing his own humanity.

On the radio, through the Internet, the television, jerky anxious pictures of annihilation. As though burnt into my retina,I can’t even close my eyes to make it go away. I wake in the night to the sound of screaming. My own screaming. Terrified and alone.

And against that how can I seriously be expected to talk about Parkinson’s?

Of course I can’t. And so I won’t.

My message to our great Parkinson’s family this year? Simple. Save all the money you would have given and give it to more worthy causes – and at the moment there are many. Give it for chemotherapy in displaced Ukrainian children. Give it to prevent Amazon deforestation. Adopt a polar bear. Anything. Anything worthy. Just do what you can to redress the balance. Apologise to Gaia. Pray to any gods you may have . But act. Above all act.

Oh for goodness sake. Start here first:

As a person w/Parkinson I’m probably expected to b grateful 4 all efforts 2 raise awareness. I’m not. IMO launching a new symbol seems like a desperate attempt 2 b seen as doing smtg useful instead of doing the work actually needed https://t.co/yxnZRzuytz

— Sara Riggare, PhD (@SaraRiggare) April 9, 2022

Branding the alien

I think they used to call it tagging – one graffiti artist (and I use artist in the loosest possible interpretation of the word) leaving his calling card anywhere and everywhere. I think it originated as a way of marking one gang’s turf from another. Simple symbols, colours and so on until the surface was covered with a cacophony of jostling colours. Another symbol to recognise, another gang to avoid.

So it is with the Parkinson’s community. From somewhere, we have another (yes, hard to believe I know) symbol, new colours to rally behind. This time it’s a orange lightning flash or something like it. It’s hard to imagine a less appropriate symbol especially at this time. Lightning flashes, to me and as many people as I have asked, suggest things like the SS lapel motifs. Throw in a skull or two and we might as well use the full totenkopf emblem.

Even taking out or brushing to one side the rather sinister imagery in terms of war (don’t forget the Russians the using something similar as well), the lightning flash is hardly an appropriate symbol for a condition of such slow pace. For a stroke, or similar catastrophic neurological event, it kind of makes sense. But for Parkinson’s? Really?

At a time when we as a community should be thinking about practicalities this kind of nonsense is just a distraction. I gather that people are invited to modify the logo to suit their own needs. You can be sure that I’m going to do exactly that.