When you are newly diagnosed with Parkinson's, you find yourself on an information rollercoaster. You are inundated with information, weighed down with websites, pummelled by pamphlets and awash with advice. Everyone seems determined to tell you what you should do, when you should do it and what will happen if you don't (or sometimes even if you do). We talk of Parkinson's as a journey and, just as we're slipping on our metaphorical trainers, people are hastening to tell us about the rigours of the journey and the toll it will take. Whether they believe themselves to be helpful or not, there seems to be a need among some of the gloomier 'old hands' to make you share their despondency, their apathy and loss of spirit.
For these people, all life was sucked out of their bodies by the diagnosis. They sit quietly in a corner of God's waiting room waiting for their appointment. These are people who never get beyond the 'why me' question, people whose sense of victimisation by the illness gnaws at their being. These are people for whom wallowing in self-pity is the norm,
Misery attracts misery. The glums are never happier than when sharing their wealth of experience with a Parkinson's rookie, watching cannibalistically as they draw the life force out of their victim. Some don't even realise they're doing it. Others take some perverted comfort in dragging people down rather than lifting them up.
Parkinson's is like that. As a good friend of mine explained, the same thing that makes us frail also gives us power. The value of that experience is incalculable. Our narrative of the illness can be used for good or bad. We can do irreparable harm or inestimable good. We can become dementors or beacons. And these are not predetermined paths, the unalterable expression of Parkinson's on the human psyche.
These are choices. We have the capacity, when faced with Parkinson's, to avert our gaze and cower, beaten, in a corner. It's the soft option, passive and victimised. Or we can stand tall, stare this intruder in the eye and decide to do our best. Not just for ourselves, but also for others.
Parkinson's gives us that power. And it does so in direct proportion to our experience. The longer we have had Parkinson's, the more valuable and credible is our experience of the condition and the more sought-after is our opinion. That is power. But with that power comes responsibility. We can wield that strength for good or bad.
I've been lucky. Although my early experience of Parkinson's, and people with Parkinson's, was dispiriting, it was not terminally disabling. Among the many dementors, somehow I found, or was attracted to, people whose indomitable spirit fought back against the condition -- people who, as the condition took more and more from them, seemed to find more to give. People who would not submit to the condition but resisted with fearless determination. People who come from all walks of life -- a teacher from Tennessee, a surveyor from Hertfordshire, a boxer from Norfolk, a nurse from New Zealand and more.
Parkinson's is tough, certainly. It is, as Michael J Fox once memorably said 'the gift that keeps on taking'. It will make demands on you as it progresses and how you face those demands will say much about you as a person. I have been fortunate to have met people who, in the words of Val Doonican (and I can't quite believe that I am quoting the prince of knitwear), " walk tall, walk straight and look the world right in the eye".