In 1995 I was diagnosed with Parkinson’s at the age of 26. Three years later, I attended my first meeting for PwP. It was a big step for me. Until that time I had not even admitted to myself that I had Parkinson’s. I had decided that I couldn’t go on living in denial. I had to face my demons. I had to confront this condition now.

The meeting was in London and came with an agenda, which encompassed a range of topics with the principal focus on something called “Patient Engagement”. I felt attracted by this concept. The idea that someone with Parkinson’s could somehow contribute something constructive to improve the lives of others was appealing. I felt that by attending this event I would be embracing the thing that was throttling me and that it would pave the way to a new attitude; a new me – not so much despite Parkinson’s, but because of it.

To say I left that meeting in total shock and despair would be understating it.

It transpired that the meeting had been organised by a group of head-hunters – literally! Despite being quite sensitive in the manner in which we were asked, donating the contents of my cranium to the London Brain Bank was not my idea of “patient engagement.”

I went in search elsewhere in my quest to fill the intervening years before my head became detached from my body with something constructive. I found this in the U.S. A small group of active patients who called themselves the Pipeliners under the leadership of Perry Cohen and whose principal focus was to give a voice to people with Parkinson’s.

The Pipeliners aligned themselves closely with other patient organisations such as the Parkinson’s Disease Foundation (PDF) and the Michael J Fox Foundation providing them with a source of new intensity and focus.

It was the combined brainchild of Dr. Stanley Fahn and PDF’s Robin Elliott to hold a global conference for Parkinson’s. This was followed shortly afterwards by a stroke of genius: the appointment of Eli Pollard as the conference co-ordinator. Eli quickly gained the respect of scientists with her professionalism and always cheerful manner, but crucially, she also reached out to people living with the condition; to the Pipeliners and other similar groups – for the first time ignoring organisational and political boundaries that existed in the Parkinson’s sector. 

At a pivotal meeting held in Washington, leaders representing the scientific, clinical, allied health professional and patient fields convened to decide whether or not patients should be invited to attend the “World Conference”.  Initially, it looked as though the conference would be solely scientific in nature, but as the discussion continued more and more voices supported the idea of involving and inviting people living with the condition.  In the end, the combined influence of Fahn, Elliott and Pollard won the day and this was to serve as a turning point for the Parkinson’s community as a whole. 

The first World Parkinson Congress was opened by Michael J Fox, amongst others, in which he stated that he had found 95,000 references to Parkinson’s on PubMed, but “I am not tying my tie any faster.”

The first conference was in Washington, D.C. in 2006 and was a huge success. The seeds of a new culture of collaboration between those treating Parkinson’s and those being treated had been sewn. 

Eli hit the ground running for the second congress in Glasgow in 2010, which was opened by the champion of the local Parkinson’s scene, Bryn Williams (more commonly known as “Wobbly Williams”) who, at the opening ceremony, talked about “the fierce urgency of now”.  It was a compelling start to a meeting, which surpassed everyone’s expectations in terms of the calibre of the scientific content, the progress that had been made since Washington, and the sense of increasing partnership between patients and doctors. 

The closing event in Glasgow was a quiz on Parkinson’s run by The Cure Parkinson’s Trust and hosted by comedian and author, Tony Hawks.  I will never forget the moment when on revealing the answer to the question “when was Muhammad Ali diagnosed with Parkinson’s?,” Hawks was taken to task by an American man who said that he thought the answer was wrong.  Hawks proceeded to invite the man to sit with him at the front of the stage. They made a quite striking duo with Hawks at 6ft 3” (191cm) contrasting against the significantly more diminutive stature of the American. 

“And what makes you so authoritative about Muhammad Ali’s date of diagnosis?” chided Hawks, to which the response in a New York accent from a certain Dr. Stanley Fahn came,

“I diagnosed him!”

Montreal was the venue for the third congress and once again the opening ceremony was peppered with inspiring thoughts and quotes.  Most notable for me were the words of Canadian, Bob Kuhn who said that the difference between “illness” and “wellness” was that “illness” started with an “I” and “wellness” starts with a “we”. 

Montreal established the World Parkinson Congress as the most important event in the Parkinson’s calendar.  The Parkinson’s community was at last recognising the value that PwP could bring to better shape and guide progress with the unmet needs of those living with the condition. There was a new breed of advocate, some of whom were scientists themselves and could communicate at every level of Parkinson’s, such as: Dave Iverson, Jon Palfreman, Jon Stamford and Sara Riggare. 

With Eli Pollard still leading from the front, the supporting committees changed from the “old guard” to the new and more “can-do“ group who transformed the program to a more inclusive, team approach to the congress. 

By the time the fourth congress in Portland in 2016 came around, there was a frenzy of excitement amongst patients and scientists alike. The attendance figures increased by 50% and the number of people with Parkinson’s attending had increased threefold from the Glasgow event.  With the number of attendees now passing 4,500, there was a genuine sense that the Portland Congress really did represent the thoughts of the Parkinson’s community worldwide. 

This time it was basketball legend, Brian Grant who provided inspiration at the opening event, saying, “I fight knowing I can win. I don’t stand alone.”

In Portland, Eli Pollard and the World Parkinson Congress had done something no other organization had achieved: it brought together the entire Parkinson’s community under one roof to work together as a team to promote progress, excellence, empathy, innovation, cross-fertilization of ideas, improved communication, and a new culture and spirit of togetherness in the quest to find breakthrough treatments and ultimately a cure for Parkinson’s. 

As someone who has lived with this condition for 22 years, the change I have seen in the attitude of scientists and clinicians has transformed from paternalistic advice and generic treatment pathways in to precision medicine and shared decision-making.  Progress is now informed by expertise, but shaped by experience.  People with Parkinson’s are better informed and understand the importance of participation.  They are able to look beyond their own personal condition to the bigger picture and embrace the concept of advocacy and the fulfilment that it can provide. 

I believe much of this has been wrapped up in the WPC story.

Ultimately the World Parkinson Congress provides an environment where PwP enjoy a sense of enormous camaraderie, and also humility at the amount of work and number of people involved in the search for better treatments. Dr. Jon Stoessl, the WPC President-elect once said, “the World Parkinson Congress is somewhere where we can concentrate on what PwP can do rather than what they can’t.”

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Tom Isaacs has spoken at every WPC since inception. He received the WPC Award for Distinguished Contribution to the Parkinson’s Community at the WPC 2016. He is the Co-Founder and President of The Cure Parkinson’s Trust. 

Watch Tom receive the WPC Award at the WPC 2016 in September 2016.

Watch Tom’s talk on what stem cells mean to people with Parkinson’s.

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®.