Every person with Parkinson’s can remember, often in exquisite detail, the moment when they were diagnosed and, in essence, joined the club. I’m tempted to capitalise “the club”, so pivotal will its impact become in subsequent years. For me, 11 December 2006 was the date in question and, rather appropriately I thought, 11 AM. Like an armistice in a way only this amounted to the beginning rather than the end of hostilities
My diagnosis appointment was perfunctory but decisive, leaving no wriggle room. As time passes the detail fades a little. But it comprised all the usual stuff – walking up and down, finger tap and so on. It didn’t take long. The neurologist in question, a German trainee from Düsseldorf, handed me two or three leaflets detailing the condition and invited me to return six months later. In the meantime, I was referred to Kings College Hospital for further investigation and potential recruitment into clinical trials.
I don’t recall being particularly shocked by the diagnosis or the means of its conveyance to me. I have been a scientist all my life and appreciate clarity of thought rather than medical platitudes. “Give it to me straight, doc” has been my motto for as long as I can remember. And I think that’s the point. It worked for me but I suspect this approach suits rather few.
At the time I was diagnosed, there was and still is a degree of controversy about the means in which people are inducted into The Club. There are, broadly speaking, two schools of thought here: on the one hand there is the gentle, soft-spoken and encouraging “we will help you all along the way” approach. On the other hand there is the, short sharp shock “get it over quickly” means of addressing the diagnosis.
There is of course a conundrum here. Parkinson’s is a long term neurodegenerative condition for which there is no cure at present. That’s the bad news and, grim though it is, it needs to be imparted to the patient. But it is also survivable, and can even be a source of inspiration, helping to refocus, in a positive way, the individuals life.
This duality has been a particular problem in terms of raising awareness. Paint a picture of unrelenting misery and the money positively gushes in. It’s a terrible condition and research is needed. Conversely, too fluffy an image, all smiles and laughter, pulls the rug from under the fundraisers’ feet. If the condition is that much fun we should all join. The truth is that it is both and also neither. Not surprisingly, few are able to walk this tightrope with conviction.
The diagnostic meeting is critical. At the end of the day, certain pieces of information need to be conveyed to patients at that first diagnosis meeting. Yet at the same time it’s important to acknowledge that once the P word is uttered, patients become immediately deaf to any further information. Most patients would be unable to tell you their birthday.
Given all the time in the world, one might wait until the P word has been absorbed before trying to pass over more information. But that situation doesn’t apply. In 15 minutes one must go from assessment, through diagnosis and onto treatment options. That’s a lot of big stuff to get across. And some things simply can’t wait six months until the next appointment. By that time, they will have Googled everything about Parkinson’s both good and bad. Books with titles like “I cured my Parkinson’s by colonic irrigation” encourage them (wrongly) to be feisty and challenging.
This is the point where I’m out of ideas. I can recognise the difficulties but I have no more to offer in terms of solutions. One thing we do know is that patients who are either given or acquire a positive outlook at diagnosis fare better than those who see it (wrongly) as a death sentence.. I’m pleased to see that, since my diagnosis, getting on for two decades ago, practice has changed. Increasingly diagnosis is made by neurologists rather than dilettante GPs, unused to imparting such a nuanced diagnosis as Parkinson’s. With Parkinson’s predicted to reach pandemic proportions over the next quarter-century, how we encourage positivity will have a huge bearing on outcomes for patients. We may not recognise it as such yet but we are part of a huge experiment that may even have bearings beyond Parkinson’s.