Tag Archives: Parkinson’s Disease

Not so funny…

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I have this dream.

I am on an ugly, filthy, rusty ship with a vile crew of criminals and murderers. These aren’t comic-book or movie characters, these are the real deal. They bristle with aggression and violence and you know they would cut your throat as soon as look at you and feel no remorse.

There are no friends on this ship.

I am standing on deck looking back at the shore where I can just about make out my wife, with our two boys: standing together looking out towards the ship, and occasionally waving (although it is clear that while the ship may still be in view, no longer can they see me)

For my part, I am frantically waving, trying to get their attention. The story is that I’ve been press-ganged. Sitting innocently in a dockside bar I have been attacked and kidnapped, forced aboard this putrid vessel and put to work as a cabin-hand by day, chained to the deck rails by night. Forced against my will to work and fight as a member of this pirate crew.

But my family don’t know this. As far as they are aware, I have just taken myself off, possibly in search of some kind of adventure.  Never to return.  I will disappear. Missing – presumed dead.

As she and the boys begin to slip out of sight, I realise that for some strange reason, I can still clearly hear them, although when I try shouting out. It has no effect.

“Where’s Dad gone?” The Boys keep asking

“Why has he left us?”

“Is he coming back?

“Are we going to go too?”

She sighs “I don’t know, I don’t know … Come on … we had better get back …”

I shout and I shout “I love you, I’ll be back, don’t give up on me …”

But it’s of no use. They can’t hear me.

They become ever smaller dots on the shore until finally they disappear from sight and my ship of horrors slips into the inky blackness.

I am still waving and shouting.

Cry? No. If I started I’d never stop.

 © Andy Daly  2010

Dub-cutaneous injections: Aswad and the man who….

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I have spoken elsewhere about how I’m continually fascinated at how the brain reacts and adapts to the collection of miseries that is Parkinson’s.  Of particular interest and importance in my case is the role that Music plays in my daily life. Not as mere ‘background noise’ but as ‘brainfood.’

I believe that music, something  I consider (and I speak as a Visual Artist) the highest, purest artform engages in a subtle and sophisticated dynamic with the brain that we are often unaware of.

“We listen to music with our muscles” Nietzche. Sacks (2007) p. xi

 Indeed as I write this, I am coming out of an ‘off’ spell.* I am coaxing this return to a state of relative fluidity by swinging my good right leg in time with the off-beat accentuation of Reggae and Dub music. As it happens today, big favourites Aswad.

 Of course, you could say all that is happening here is that the drugs are finally kicking in, bringing an increased feeling of well-being,  CD happens to be playing and so I’m swinging along to it: End of story.

But how does that explain many occasions I have been able to fight away, or bring myself out of a particularly deep ‘off’ spell by listening and dancing to music.? (Okay, ‘dancing’ may be stretching it a bit … Let’s call it ‘moving’) when in theory I shouldn’t have been able to walk? No, something far more profound is happening here.  I have a confidence, a freedom and range of movement normally absent. Plus I am able to dance – sorry ‘move’ – for longer periods than my medication would normally allow.

I’m not the only one of course:

“Some of them could not initiate a single step, but could be drawn into dancing and could dance fluidly” Oliver Sacks in his book ‘Musicophelia’ (2007) on post-encephalitic/Parkinson’s patients encountered in 1960s.

And what about the task I am hopefully about to accomplish? Which is insert the needle of a Graseby Winged Infusion set into my leg. The needle, which is 2cm in length (doesn’t  sound much does it?) is attached by a short tube to a syringe, set in a battery-powered pump which I wear round my waist and gives me a constant, measured dose of the Dopamine Agonist drug, Apomorphine. The needle has to go up to the hilt into the sub-cutaneous (Fatty layer) beneath the skin at a 45 degree angle. It’s something I have to steel myself to do every morning, and is a task which is always accompanied by music: Music of power, dignity, self-belief: hence Aswad.

* ‘Off’ (or in our house ‘offline’) describes the periods (between 4  and 6 times a day, 30 minutes to 3 hours in duration when my anti-Parkinson’s drugs are not effective for whatever reason.

© Andy Daly  2010

Quotations from Sacks, O: ‘Musicophelia’ (Picador) 2007 by kind permission of the author.

Know it all

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Now if anybody tells you that these days, Parkinson’s is not so terrible and that it can be easily managed with drugs, you can say nothing, but just punch them as hard as you like on the ‘Philtrum’ (Its the vertical groove or ‘channel’ we all have which runs – literally in the cases of some people – from the nose to the top lip) There are lots of nerve endings here which make it extremely painful when bopped.

With any luck, fragments of bone will be shattered away and lodge themselves in the ‘Know-It-All’s brain too.

© Andy Daly  2010

Brain downs tools

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With Parkinson’s everything revolves around a few – well, more than a few actually – tablets. Every bloody thing you do, every bloody where you go: you’ve got to think 3 steps ahead and make sure every eventuality is planned for. When disaster strikes and say, you have a major ‘freeze’ it’s usually that something unexpected has got in the way of a dose, or has caused you to lose momentum.

However, sometimes the opposite can happen. Under the right circumstances, I can keep going, for a while. For instance,if I am deeply engrossed in something or if I am particularly happy or feel I am having success with something. As a result, doses may be late or (rarely, now) skipped altogether.

But you soon know about it. I described it to my consultant once as akin to the comic “moment of realisation” that they used to use to such great effect in animated cartoons. You know, Roadrunner, for example, where Wily E. Cayote runs off the edge of the canyon and keeps going as though the road is still firm beneath his feet….until he stops…and realises that there’s nothing whatsoever under him. Then he gives you ‘that look’ as he pauses momentarily before plummeting down to the canyon floor. Eventually, your brain does the same, realising it has been tricked, yells “Oi lads we’ve been had, that’s it! Down tools.

© Andy Daly  2010