2010. For several months during 2010 I had a recurrent dream. Neither a frightening nor a reassuring reverie, it lasted only perhaps a few seconds. A darkened space with a gilded picture frame or mirror illuminated from above. In it the face of a bearded man in his early 60s perhaps, wearing a T-shirt. He was speaking and gesturing directly to me as if trying to draw my attention to something important. But although I could see him clearly, his voice was  inaudible.

At this point I woke up. Every time.

I had that dream the night immediately before the 2nd World Parkinson Congress, in Glasgow. By then it was such a regular occurrence that I largely ignored it. I dressed, shaved and breakfasted before nipping over to the conference centre – a giant brushed steel armadillo.

I had attended dozens of conferences during my academic career in neuroscience. This one, focused on Parkinson's specifically, was of particular interest. Some of the best scientists in the world were scheduled to talk and I was particularly keen to catch John Hardy's early morning plenary session on genetics and Parkinson's. In the afternoon, my interest lay in a symposium about the neuropathology of Parkinson's. Pretty intense science but then of course I was still a self-classified neuroscientist.

I had pretty much mapped out my planned itinerary over the course of the three days of the meeting. Solid wall-to-wall science I thought. Despite being diagnosed with Parkinson's four years earlier, I still saw myself in the neuroscientist category rather than as a patient. Somehow I was still clinging to my neuroscience past rather than my PWP future. I still wanted to hear about receptors, genetics, vesicle trafficking and nerve terminal architecture. I wasn't ready to trade these for dance and Parkinson's, advocacy and empowerment, family needs in early-onset Parkinson's. I wasn't ready to be a PWP. 

But that's the beauty of the WPC meetings – you start somewhere with fixed focus and you end up somewhere completely different with an open mind. And so it was for me. I had intended to fill the three days with lots of basic neuroscience in rooms full of neuroscientists. Elsewhere there were rooms full of neurologists discussing clinical findings and other spaces occupied by patients.

And if I found myself by chance in the wrong lecture theatre, the dress code was a giveaway. The neurologists were all suited and booted, the scientists in Marks & Spencer jumpers and the patients in T-shirts and jeans, tapping with poles or bouncing footballs. And in the corridors and refreshment rooms, where everyone mingled, was a huge collision of cultures. You might stand in the queue for coffee between a stiff suited clinician and a quivering figure in jeans with a Woodstock T-shirt. 

Gradually it dawned on me that this was the gist of WPC. It wasn't just created by clinicians for clinicians. Nor was it patients talking to patients or scientists speaking to their kin. It was all about the gaps between the groups. If the conference was a molecule, the atoms would be the different groups. But more importantly, and what makes atoms into molecules, are the bonds between the atoms. The real interest lay in the bonds, not the atoms. Put like that it made absolute sense. Well, I was still a scientist. The interface between the groups was where advances were to be made. 

And overhearing conversations in the corridors and around the posters, I began to realise that there was a whole world of Parkinson's about which I knew next to nothing. I could tell you all about dopamine autoreceptor down-regulation in the basal ganglia but, when it came to day-to-day hacks for patients, I was a blank page. My science didn't help there. I felt vulnerable.

But why did my science leave me so vulnerable? Why was its magic so weak? Like many scientists, I had worked away in my laboratory without ever seeing people with Parkinson's. The first PWP I 'met' was myself. How could I say that I was studying Parkinson's without having seen a single PWP? 

In a moment of chilling revelation, I realised that I was more than just receptors, enzymes, genes and transmitters located in remote parts of the brain with funny Latin names. I realised that my previous scientific reductionism was going to be of no help to me going forward. It was time to embrace my inner PWP. It was time to come out.

I threw away my planned conference itinerary. A conscious decision. Instead I decided ad hoc to go to whichever session had the best mix of participants. You can call it fate. You can call it whatever you want but the fact remains that I saw my future painted clearly for me. Like Saul on the road to Damascus or Martin Luther King in Memphis, I saw my future. It was time to say goodbye to dopamine. It was time to put on different clothes, to be a PWP.

I would like to say that in the last decade I have changed the world like Michael J Fox or Tom Isaacs but that would be untrue. People like that come along once in a generation. But I have done everything I can to empower patients, to increase their voice, to magnify their impact – to make sure they, or rather we, are heard as equal partners in any medical context for Parkinson's. The WPC 2010 helped me find my role.

Last month my recurring dream returned – the bearded older man, calling me to action. The dream was exactly the same as a decade ago. But this time I recognised the man calling me to action. He had aged somewhat in the intervening years but there he was, still no mistaking the obvious.

It was me.