Month: April 2023

No oil painting

A little over a year ago, I commissioned an artist friend of min (Cathy Barcham) to paint a portrait of me. I gave her a very specific brief. The painting was to be executed in oils and of good size (100 x 50 cm). I was less concerned with an exact likeness. We have been friends for nearly 20 years and I asked her to use that understanding in the painting itself. I wanted her to paint a picture of me as a friend, warts and all. I did not want a simply flattering portrait. I set no timeframe for the painting beyond my own impatience. The painter however knows me well enough to be able to resist enquiries of the “how’s it going?” variety.

Why would I choose to have my portrait painted? Many of you may feel this act to be little more than self aggrandising nonsense, the supreme conceit and a triumph of misdirected narcissism. If that’s your view, that’s fine. You may stop reading here and I will wish you a cheery goodbye.

I think they’ve gone now. So let me just dismiss those points above. The painting itself dismisses most of these points anyway. I have sufficient insight into my facial features to realise that I am not a George Clooney, a Paul Newman or Robert Redford. Girls may indeed swoon at the sight of my face but that’s usually for different reasons! At least when they comment that I am no oil painting, I can demonstrate that I am!

But in any case that misses the point. The reason for commissioning this painting was primarily because of the way in which one’s expression changes during the course of Parkinson’s. We are all familiar with those blank expressions and soulless eyes that are so characteristic of advanced Parkinson’s. My intention with this was to try and capture something of me before Parkinson’s robs me.

But there are photographs surely? Why a painting? Yes of course but they fail to capture the subtleties of facial expression, the transient micro-expressions that an artist sees that the camera doesn’t. Don’t misunderstand – I am a huge fan of photography and its power of expression but when it comes to portraits, the camera falters. It had to be a painting.

I know of no painter who could capture my inner soul better than Cathy. I did not want an airbrushed, beaming, Bourgeois picture of self-satisfaction. I wanted something that would peer into the dark as well as blank back in the light. I wanted something that hinted at the unknown. For that, there is no one better than Cathy. This is her domain, capturing in a single brushstroke all of the unseen. Of those consoling hugs, the shaking night terrors, of hopes and fears. It’s all there. And I see more, the more I look.
When it comes to Parkinson’s, I am fundamentally on borrowed time. Each day invites me to do something extraordinary, to find new ways to communicate.

Those of you who have read this far will realise the ultimate purpose of this painting. It’s not about me. It never has been.

This is for my children.

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.

Dad’s back.

April is World Parkinson’s Month, in which we (people with Parkinson’s) try to raise awareness amongst the general population, the month in which we try to share our experiences to help you understand why we do what we do and why we are what we are.

Briefly, Parkinson’s is an incurable neurodegenerative illness affecting movement and a whole bundle of other physiology. That means it’s going to affect every part of body functioning, it’s going to get worse and there is nothing you can do to prevent that.

These facts are usually presented to patients along with their diagnosis. That’s a lot to take in, a lot to absorb in that brief consultation with your neurologist. It is commonly said that patients die with rather than of Parkinson’s. That’s not strictly true. Life expectancy is shorter with Parkinson’s, the extent to which it is shortened being determined by age of onset and symptom cluster. On the whole, you get about 16 years post diagnosis. And, without wishing to belabour the point, those 16 years will not probably be as much fun as they would otherwise have been.

That sounds, on the face of it, a grim proposition, with little in the way of prospects. That’s not entirely the case. Sure, it is degenerative and incurable. But it is possible nonetheless to slow the disease progression. Careful attention to diet, exercise and medication routine (yes, all the boring bits) can change the clinical picture substantially. Okay we can’t stop it in its tracks but we can slow down this symptomatic behemoth. Parkinson’s is all about time, about buying time. Buying time until a cure is found.

Around 18 months ago, my 16 years were up. I was, if you will, on borrowed time. We (that’s me, my neurologist, my Parkinson’s nurse and my family) had to make a decision. We could let nature take its course or force its hand. And after 16 years of Parkinson’s, you don’t have too many cards left to play.

My choices boiled down fundamentally to one – DBS. DBS stands for Deep Brain Stimulation and, when you know what it entails, you can see why it is always referred to by the acronym. In this procedure, thin wire electrodes are implanted deep below the surface of the brain (around about 2 inches) into, mostly, the subthalamic nucleus. Once in place, tiny pulses of electrical current reduce symptoms of Parkinson’s, some more than others.
Not a decision to take lightly. For many in the early stages of Parkinson’s, it is a bridge too far, a Rubicon most will not choose. After 16 years of symptoms, the situation is different. You can no longer hide. In my case, the choice was simple. I could either continue down the same largely certain path of neurodegeneration or I could take a stand. I could buy myself time.

DBS is not a cure. Let’s be clear on that. It buys you time, nothing more. Time to enjoy life, to help other people with Parkinson’s, to watch my children fulfil their potential, to become the people their best selves. All these things and more. Is it all a bed of roses? No. A small proportion of patients get no benefits from the procedure. Some (thankfully few) get worse. A tiny minority even pay for it with their lives, suffering a stroke as the electrodes penetrate deep into the brain. But for the large majority, it helps.

My surgery was conducted at the beginning of November 2021, at the height of the Covid pandemic. No visitors were allowed. There was no one to hold my hand, figuratively or otherwise.

My electrodes were switched on on 5 November, fireworks night in so many ways! The benefit was instant. Not huge but noticeable. My walking was better, my tremor largely absent and my balance reasonable. I took videos of myself walking up and down the ward and showed them to my children. My daughter burst into tears. “I can’t remember seeing you looking so well” she said, in one sentence justifying the entire procedure.

What more can I say? Dad’s back.