Friday, 11 October 2013

Plain speaking

Montréal was a remarkable epiphany for many who attended. Particularly among the patients but also, if a little less obvious, among the researchers, there was a genuine sense of community, a perceptible family bond. There was the feeling that we were each looking out for each other. Many of us vowed as much. And although we arrived as separate groups, within three days we were one tribe. A feast of friends.
Parkinson's is a notoriously variable condition with some barely noting deterioration year on year while other less fortunate patients seem to be plummeting toward akinesia. And the speed of progression can vary even for any one individual. Whenever people with Parkinson's meet, they invariably ask two questions. First, "when were you diagnosed?" and, secondly, "what are you taking?". And these questions are loaded. They are to help you establish whether your interlocutor is doing better or worse than you. In other words to provide reassurance to the questioner. It doesn't always work. I lose track of the number of people who have had the condition a decade longer, yet appear ready to face an Olympic decathlon while I struggle with the 25 m waddle.
In Montréal it was both reassuring and alarming to see the extent to which some friends had changed. Or not. And I'm not talking solely about motor symptoms. Montréal had it all -- people who were unmedicated and others who were popping pills like going out of fashion. For every well-controlled, carefully managed Parky, there were at least as many who were either accidentally or deliberately making life needlessly difficult for themselves.
This brings me to my point. And if I can couch this in the form of a question, it is this: how long should one stand by and watch friends harm themselves either by refusing medication or overdosing? Should I stand by and let my friends destroy themselves or should I risk their friendship and intervene?
Maybe you take the view that it's their life and I have no right to impose my thoughts upon them. Perhaps you're right.
But perhaps also that's the coward's way out. A way of justifying your inaction. A way of making you comfortable with your refusal to grasp the nettle.
It's not a simple matter. Have you ever tried to make a delusional, obsessive, impulsive man realise that popping dopamine agonists like Smarties does not make him the life and soul of the party. It makes him a junkie. The last decade has shown us clearly the dark side of agonist abuse. And it can take you to some pretty dark places.
At the other end, what do you do with a friend whose stubborn refusal to take medication is quietly killing him. When I was diagnosed in 2006, the jury was still out on whether early medication had any advantage. That's changed. The old days of "wait-and-see" are gone. The scientific data now overwhelmingly shows that early medication improves quality of life and that if you delay, you will never catch up. By the time you decide to take medication, there will be no benefit left. The horse will have bolted.
I've been wrestling with this all night. Is it any of my business? Do I say nothing and watch this wilful self-destruction? Or do I of speak out, and lose their friendship? Do I value their friendship above their lives?
I'll let you know.


  1. This is incredibly astute. Sign me ... under medicated

  2. Well said Jon. In my opinion, you've encapsulated the essence of "How WPC can transform a patient into a partner with others on the same path."

  3. you were thinking lots Jon,I think a lot of us were not intentionally under medicated but had too much on our minds to remember when to take our meds on time., that was me

  4. This is an important discussion, and I would agree with your conclusions. I try to coach my fellow PWPs to medicate to get the maximum out of every day, because a good day today is worth more than the possibility of a bad day somewhere down the line.