I have had Parkinson’s now for 13 years, some better than others. I’ve had it long enough that… well, I’ve had it long enough, let’s just say.
But one of the blessings (or curses, depending on your demeanour) of reaching such an unenviable milestone is that I am often asked for advice about living with Parkinson’s. And I should say immediately that this has nothing to do with any great scholarship on my part. It’s more a reflection of the fact that I’m still here.
As you get further along in Parkinson’s, the numbers begin to dwindle. Five years into the mission everyone is imbued with enthusiasm and a “can do” mindset. You march along, at the head of a column so to speak, breathing in the fresh air and confident in your cause. Then after a decade, you look over your shoulder and there don’t seem to be as many. Another couple of years and there are fewer still. By the time you get to 20 years post diagnosis, you have reached godlike status.
Well I certainly haven’t reached the status of any deity, except perhaps the Buddha, and that merely an observation about my increasing belly. But I do get asked a lot for advice about this miserable condition. Nothing special there. We all get asked advice at some stage. The question is what do we do.
That may give you a couple of scenarios.
First example: Tristan, a friend I have known for many years calls me up and tells me that he is experiencing troublesome dyskinesias and what should he do about it. I have a think and then give him my advice.
Second example: Gunther, somebody I met once at a conference many years ago (couldn’t remember his surname) emails me and asks me for my advice on dealing with dystonia for instance. I am busy but manage to send him a couple of paragraphs of thoughts.
How do these two situations differ? In each case, a request for advice has been made and in each case advice has been given. But is the character of the advice the same? Does it have the same strength and importance?
The closer you inspect the two scenarios, the more pronounced are the differences. In the first case, Tristan was asking me for my advice as a friend. I gave my advice openly without thinking too deeply. It was a casual question and perhaps received a casual response. In the second situation, Gunther was at best an acquaintance. My response to him was understandably a little more circumspect and less direct.
So what, I hear you say. All advice is the same. It doesn’t matter who asks and who gives advice.
Actually it matters a lot. Let me explain.
The first scenario is easy. A friend asks for advice lightly and takeS it in the same vein. If my advice doesn’t help or, perish the thought, makes things worse, Tristan will tell me so and I will have another think.
But the second scenario is different not only in the way the advice is requested but also in the way it’s received. Perhaps Gunther has heard that I’m a neuroscientist and therefore anticipates my advice being more valid. There is thus a higher expectation of good advice and, in equal measure, a greater disappointment if my suggestions fail to bring relief.
Let’s go further.
Let’s imagine that things go really badly and Gunther finds himself in hospital after following my advice. He feels aggrieved that the advice of a neuroscientist should be so dangerous. He writes as much on one of the many Parkinson’s bulletin boards and chat rooms.
In his diatribe, he draws attention to the poverty of the advice given by myself, feeling that it falls short of that expected of a neurologist. It probably does and therein lies at least partly an explanation. A neurologist and a neuroscientist are not the same thing. I know that and so does every neurologist. But evidently Gunther did not. He took my advice to be that of a fully fledged neurologist rather than a semi retired neuroscientist.
Does it matter whether I am a neurologist or a neuroscientist?
Yes. It matters a great deal. Knowing that I am a humble jobbing neuroscientist, Gunther would perhaps hold on to my advice more lightly, viewing it against a backdrop of similar advice from others. However, labouring under the misapprehension that I’m a neurologist, his expectations are much higher and disappointment more profound.
However, even there, he has little source for complaint. He has received free advice. And, as we all know, things are worth what you pay for them. Had he paid for the consultation with a genuine hard-boiled neurologist and then found himself in hospital, his indignation would be justified.
The point I’m making is that the character, import and meaning of advice is contextual. It depends on who is asking and who is receiving information and the relationship between them.
Let’s go back to Gunther for a moment. Still in hospital, he is grumbling about the poor advice he has been given when, discreetly, the man in the next bed passes him his business card. “Mr S Beckmesser, Lawyer”.
I think we can all see where this is going.
I have deliberately painted an extreme situation. Or it might seem so. But the truth is that, in an increasingly litigious society, we may find ourselves facing litigation for poor advice, no matter how honestly and earnestly it is given.
The biggest danger as I see it lies in the forums and chat rooms where advice is liberally dispensed amongst total strangers. Somehow it is felt that the cloak of anonymity allows expression of ideas that may be dangerous. It is not even unknown for trolls to deliberately dispense dangerous advice.
There are a few things more calculated to unsettle the administrators of chat rooms than the perception that they may be held responsible for the consequences of any rogue postings or honest but dangerous advice. Not surprisingly, conditions, caveats and codicils abound.
It is increasingly difficult to know what is reasonable. On the one hand one does not wish entirely to suppress novelty, creativity and endeavour on the altar of litigation. On the other hand, perhaps there is a need for people to emphasise their credentials (or lack thereof) and context before giving advice.
Personally, I am more reticent about giving advice these days for some of the reasons outlined above. A pity really because, after 13 years, I have plenty of advice to give.