As you may know, I try to avoid focusing on my Parkinson’s as a subject for posts, but this has been gnawing away for a little while, so here we go.
Know It All
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 (It is the vertical groove or ‘channel’ we all have which runs 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.
Joy of Movement
In order to experience the joy of movement every morning I enter into a kind of ‘Faustian’ deal. However in my case it is not out of choice, nor some idle desire for worldly pleasures, knowledge or power. Neither is it made with the Devil (although sometimes I do wonder.) No, my pact is with pharmaceuticals and my Mephistopheles, the drug companies, Merck and Boehringer Ingelheim. For the joy of movement I have to take regular doses of two drugs in particular: Levodopa which basically turns into Dopamine in the brain in an attempt to replace the missing ‘chemical messenger’ whose depletion is essentially the cause of my Parkinsonian symptoms. However, Dopamine is very quickly broken down by the body, so it requires plenty of help to ensure it reaches its target. (Think of ‘The Dambusters’ or the aerial bombing sequence at the end of ‘Star Wars’ that Lucas lifted from the same 1955 classic.) My Neurologist once said it was a bit like putting rocket fuel in a car. The second, Pramipexole, is a Dopamine Agonist, designed to stimulate receptor sites such that they make the most efficient use of the available Dopamine. Both are in my case, very effective when taken at the appropriate times, sometimes in conjunction with other drugs. They permit me a range of movement from one end of the scale: stumbling and creaking about, to the other equally debilitating hyper-active and dyskenetic (uncontrollable) movement and everything in between. These phases manifest themselves as I go through the day and the efficacy of the drugs is tempered by stress, tiredness, the ‘blocking’ action of proteins, the wearing ‘on’ or ‘off’ of doses, dose failure and so on)
And what is the price I have to pay? Well, well, this is where it gets interesting. As drugs of true dependence, over time your body requires more to do the same job; and of course Parkinson’s is degenerative as we know. So over even more time it means even, even more. Even more drugs which are known to cause secondary effects (did you know this?) such as hallucinations, paranoia, compulsive behaviour, psychosis and all sorts of other unpleasant things you really don’t want to know about. Out and about, people assume that you are drunk – or just a nutcase, and laugh at your increasingly eccentric behavioural mannerisms: which of course become worse once you realise you are being observed. Friends and family watch as your personality becomes hideously distorted and, just like drug addicts out on the street, you turn inwards and obsess about your next dose, and the next and eventually it starts to run your life. And the worst thing is you know it happening, but feel powerless to do anything about it.
And what of Love?
You love. You love as deeply as you ever did, perhaps even more so, but as deep as you feel it you also want hide it. You want to hide yourself away too. I guess it becomes part of your defence mechanism. You feel the need to protect those around you and immunise them to your suffering. You get so objective about it that you start to become hard-hearted. You can’t bear to think about it sometimes as you feel it reveals chinks in your armour which would very easily be exploited by the unprincipled, steely spectres that haunt you. You can’t bear to think about the enormity of what is happening. If you did, you reason, the tears would almost certainly fall. And if they started, they would never never stop. Ever. But you still feel the love, often expressed in the simplest of ways, as in the feats of endurance performed on my behalf by those nearest to me every day.
And what if?
And what if I just don’t take them? The drugs I mean. Well, within a matter of a few hours I am reduced to a kind of jelly, Unable to walk, talk clearly, chew, manipulate with my fingers or hands. I wouldn’t last long in the wild … or in the front room for that matter. But my cognition and awareness remain intact.
Nasty bastard isn’t it?
“Parkinson’s causes slowness of movement, tremor, rigidity and is commonly diagnosed in people over 60.” How many times have I read that and wondered as now, age 50 with 10 years of the ‘Shaking Palsy’ under my belt ‘Yes? and the rest?
However, there is a glimmer of hope. I have had preliminary tests at The National Hospital for Neurology and Neurosurgery here in London to assess my suitability for surgery. Specifically, Deep Brain Stimulation. I won’t go into detail, but if accepted it would mean an operation to implant electrodes deep into the brain, which would be set to send out electronic impulses stimulating various brain target areas. These in turn, are controlled by a unit (similar to a pacemaker) implanted into the top of the chest cavity. The results of this particular operation have for some time been the source for encouragement. It is not a cure. However patients for whom it has been a success have been able to substantially reduce the medication they take, while quality of movement, balance, gait and tremor among other things have improved. In some cases dramatically.
My mate Reg who has had it done says he feels like a ‘New Man’ and since the op he’s re-applied for and been granted his Driving Licence – A target for me if ever there was one.
The film? I haven’t seen it. Review? Oh dear. You mean you’ve sat through all of the above waiting for a review of the film? Oh well, never mind. At least you may have learned something.
Parkinson’s UK (Formerly The Parkinson’s Disease Society)
© Andy Daly 2011 (‘Know It All’ first published in Feb 22nd 2010)