Thursday, 4 June 2015

DESPERATION OR INSPIRATION

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".

6 comments:

  1. The Michael J Fox organisation is investigating a link between P.D. and previous clinical depression after a study showed that about a third of depressed patients go on to develop Parkinson's, like the icing on a spectacularly crappy cake.
    Telling these people " they are wallowing in self pity" is about as useful as telling a heart attack victim to "shut up and stop being in pain".
    Just because you have a positive attitude does not give you the right to criticise those who do not. Indeed it is possibly dangerous.

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    1. Dear Malcolm, thank you for your clearly heartfelt comment. The link between depression and Parkinson's is probably less secure than the Fox investigation may lead you to believe. I think the general literature fixes on a figure of around about one in 10 or lower. But it is nonetheless being investigated as one possible pre-diagnostic marker for Parkinson's.

      I too had a significant period of depression approximately 2 years before I was diagnosed with Parkinson's so I do have some understanding of the extent to which that can affect morbidity in relation to other illnesses (in my former life, I headed a research lab looking at the neurochemistry of Parkinson's and depression so it is a subject close to my heart). Coming out of depression was a significant challenge but an important one.

      There is, as I'm sure you're aware, evidence that positive ideation, in particular self-determination, has positive influences on several healthcare outcome measures. In other words empowerment, either by having a positive attitude or even trying to learn a positive attitude is beneficial and results in improvements in self-assessed health measures and reductions in healthcare service utilisation. I think most people would consider that to be beneficial rather than dangerous.

      Best regards,

      Jon Stamford

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  2. There are people who are a little more fragile, and with due respect to your intellectual compartmentalisation of your own two years of depression, have suffered suicidal thoughts for a lifetime. Being told they are wallowing in self pity will only serve to increase their feelings of worthlessness, and at that point the danger arises. The general consensus in our PD group locally seems to agree with me. So far....
    Whilst I do appreciate what you are trying to say about positivity, and who can disagree that it is a tremendous asset, there are many, with or without PD, who need to be treated to much softer language.
    Thanks for the reply!

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    1. Dear Malcolm,

      Thank you for the follow-up. I think you raise important points and I would hate to think that my description of some in the Parkinson's community generalised to all who were unhappy. I do believe there are those among our community who thrive on spreading disaffected thoughts. I was describing a particular subgroup but I freely acknowledge, on rereading, that's my words could be taken as a more general criticism. If that's felt to be the case, I apologise without reservation. It was not my intention to stigmatise those who genuinely struggle. I thank you for drawing attention to this. Can we shake on it (if you pardon the pun)?

      Best regards,

      Jon

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  3. Fair comment. Someone has stuck up for you too! Doom and gloom exists when people lose the plot. This shouldn't however, be a reason to write people off.

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  4. My trolling career ends now!

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