Let’s talk about… going to conferences as a person with Parkinson’s

Colin’s experience of the World Parkinson’s Congress

What do the following cities have in common: Washington, Glasgow, Montreal, Portland and Kyoto? 

Answer: they have all hosted meetings of the World Parkinson Congress. The Congress meets every three years, attracting delegates from all over the world. It brings together the very best researchers, clinicians, healthcare professionals and therapists. However, it is not simply a conference for those with scientific or professional interest. It is equally focused on the involvement and engagement of people with Parkinson’s and their carers, plus the voluntary organisations that support people who are living with the condition on a daily basis.

I was diagnosed with Parkinson’s in 2001 at the age of 54 and within a year, I had taken early retirement. I knew that Parkinson’s was progressive and I had seen others with the condition go into a rapid decline. I therefore waited with some trepidation to see how it was going to affect me. Meanwhile, having no paid work to do, I began to get involved in Parkinson’s UK as a volunteer, at first in my local Branch and eventually as a Trustee. This is when I first came across the WPC.

When the second World Congress took place in Glasgow, Parkinson’s UK were involved as the main host organisation.  As a Trustee, therefore, I found myself in Glasgow as part of the Parkinson’s UK’s meet and greet team. I had been to many large conferences in my working life, but the WPC was a revelation. What made it unique was its accessibility to anyone with an interest in Parkinson’s. For example, a person with Parkinson’s could listen to an account of the latest developments in brain surgery in one lecture room, and then move to the room next door for a class teaching yoga for Parkinson’s.

The range of issues covered in the 5 days was mind boggling.  Everyone I spoke to at, or after, the conference felt that the quality of the engagement between the participants was really valuable, and really stimulating. I could understand why people were prepared to travel from every corner of the globe to be part of it, including my contacts from Parkinson’s New South Wales in Australia who I had met previously during a personal trip. But for the Congress, that link would have simply remained a pleasant memory, whereas it developed into a more enduring relationship.

What’s in it for me?

There are probably as many reasons for people to attend the Congress as there are delegates. Here are just some of the reasons that might be relevant in coming to a decision. Next year the location of Barcelona may put attendance more within reach for many whose home base is in Europe.

The researcher:

• Interaction with people with Parkinson’s, which sets a context for the researcher’s task and provides a link between the research challenge and its potential outputs.
• Cutting edge research – to update one’s knowledge of the latest developments from some of the world’s leading experts.
• Presenting results – an opportunity to raise the profile of completed research projects and their conclusions in a poster display hall visited by hundreds of delegates.
• Sharing thinking – learning about what other research teams are doing and how their projects may relate to yours.

The clinician and other health care professionals:

• Interaction with researchers and identifying priorities for research.
• Engagement with patients to explain and gain support for clinical trials.
• To learn about the latest medical, surgical and other treatment options.

The person with Parkinson’s:

• Knowledge and understanding to enable you to maximise the opportunities and resources available that can support you to live well independently. This knowledge and understanding can be acquired not only through engagement with the professionals but also from other people with Parkinson’s.
• Confidence is a critical attribute in managing the condition and making treatment choices. This can be enhanced through engagement with others. Patients should not feel they have to face Parkinson’s alone.  

Would I go again?

Like a shot! I enjoyed the Glasgow event so much that I made myself a promise to attend every subsequent Congress that I could. Since then my wife and I have managed to adjust our holiday schedule to take in the meetings in Montreal, Portland and Kyoto. And what’s not to like about Barcelona in June…?

Colin Cheesman

You can read more about WPC 2022 here, and register for the virtual congress (17-21 May 2021) here.