One of the first things we learn about Parkinson's disease, rightly or wrongly, is that it is incurable. Sometimes we learn that from our neurologist, sometimes from the Internet or other sources. But for all patients struggling to come to terms with the diagnosis, incurable is not a word we want to hear.
Keen to sugar an otherwise bitter pill, neurologists will often tell patients that Parkinson's is treatable. A range of treatments can keep the symptoms at bay for years.
So that's all right then.
Actually no. Current treatments will improve symptoms certainly. But they carry a price, for many a high price. Personality changes and a spectrum of nonmotor symptoms are the price we pay for keeping our bodies moving. And while the drugs keep us moving, we have time to reflect on that word incurable.
Why? Why is it incurable? Who says so?
So we do a little reading and, sooner or later, we wonder why Parkinson's should be different from any other condition. We can cure heart disease, some cancers and most infectious disease. So why not Parkinson's?
These are reasonable questions and before long we start to ask our neurologists the same questions: Doctor, why is there no cure for Parkinson's? And then our doctors talk to their colleagues and ask the same questions.
And little by little, the Parkinson's community begins to realise that there is nothing special about Parkinson's. It is a condition like any other. One by one the list of conditions that we can cure is lengthening. One by one, conditions are moved from the ‘treatable’ to the ‘curable’ column.
I've been working in the field of Parkinson's, as a researcher and latterly as a patient too, for more than 20 years and it is time that we acknowledge this seachange in thought. As a researcher, I expect to see a cure. As a patient, I demand it. We, the Parkinson's community, are no longer happy with ‘treatable’. We have had enough of ‘treatable’. We want ‘curable’.
And we want it now.