7th August 2023Blog
Our Head of Patient Voice, Matt Eagles, attended this year’s World Parkinson’s Congress in Barcelona. In this article, Matt talks about his experience and his key takeaways from the event.
I have just returned from the 6th World Parkinson’s Congress in Barcelona, and I feel emotionally and physically drained, but with a huge smile on my face, as if I have just consumed the largest, most exotic feast I could ever imagine. I feel replete and need to rest.
It was an experience like no other, full of joy and hope. Where people from across the globe arrived not only by planes, trains, and automobiles, but remarkably by bicycle from the UK and Valencia! Even more remarkable, Neil Russell, a 65-year-old guy with Parkinson’s, ran from the UK to Barcelona (over 970 miles!) in just over five weeks in time for the start of the conference, raising thousands of pounds for Cure Parkinson’s in the process!
The Congress had a real eclectic mix of delegates from medical experts, global MedTech companies and scientists, to charities, wellness groups, and a huge number of Parky peeps and their Parky Assistants (PA’s). The sense of togetherness was palpable. Everyone had their own story to share and the audiences were keen to listen to what they had to say. It wasn’t just a case of passive listening either. Parkinson’s is aided by movement and there were numerous opportunities to take an active role in table tennis sessions, dance classes, Parkinson’s Disease (PD) warrior fitness classes, boxing, singing, and more!
We were asked to display the fabulous Parkylife campaign at this year’s congress venue, The Barcelona Convention Centre. We didn’t want to use easels to display the images like we had done at our displays in London and Manchester, we really wanted to make the delegates stop and look down at the installation – almost in a Parkinsonian way. For us Parkys, it’s what many of us do without thinking so it was well within our comfort zone. The images for the floor vinyl’s were carefully handpicked by me for maximum impact with our audience – Parky Hacks, Parky Tips, Parky Stories, and Parky Peeps. Huge kudos to Nicola Fletcher who designed the installation which included four huge teaser vinyl’s on the outside of the conference centre to give a hint of what delegates could experience inside the venue, something which has never been done before at this congress!
The interaction was tremendous! The delegates loved the artwork, particularly those who had submitted their hacks, tips, and stories, or who knew them personally. Notably, Paul Mayhew-Archer, Robin Buttery, and Sharon Kirscher. We received three offers from around the globe to translate the cards into Spanish, Turkish, and German!
Tuesday was a busy day. We were invited by Boston Scientific to an off-campus reception at the very swanky business and retreat venue, Arcimboldi, in the centre of Barcelona. Created by Anna Truyol, its raison d’etre is to humanise business meetings and provide a safe space so you can be yourself – it certainly did just that! The title of the symposium was ‘The Future of You’. The first speaker of the afternoon was Finn Janning, a Danish philosopher and mindfulness coach based in Barcelona. His method of delivery was mesmeric, and the audience hung on his every word as he extolled the virtues of mindfulness as a way of being and the future of mental health.
“Act and live in such a way that you will repeat your actions in life.” Finn Janning.
Then came Raquel Mascaraque, who has been studying the future of influencing and social media on brain function for the last 7 years.
“What we feel online is as real as what we feel offline.” Raquel Mascaraque.
Raquel spoke about how we are programmed and directed to interact with social media in certain ways, responses triggered by key words and then guided by algorithms. This ultimately has the potential to alter our personality, sociality, and ultimately our mental wellbeing. We fear rejection and crave acceptance, however a balance is required. Facebook has been going for 18 years and Instagram 12 years. We don’t know the long-term consequences particularly on the younger generations as the pre-frontal cortex takes between 22-25 years to mature. It’s a scary scenario.
We had to cut the symposium short as we needed to travel back to the congress for my first presentation on Living Well with Young Onset PD. I presented with my new friend Sree Sripathy and the session was moderated by the amazing Aussie birdman Geoff Constable, whose loud Hawaiian shirts and even louder blue hair kept the audience mesmerised.
The session was profound with plenty of takeaways for the audience.
1. Stay positive! There will be bumps in the road but staying positive and accepting what is going on will certainly help.
2. Apathy and depression are common in people with Parkinson’s (PWP) so try to do things that make you feel happy, challenge yourself, and don’t spend time dwelling on what might happen in the future.
3. Go out and meet people, people love to help so if appropriate for you, let them.
4. Embrace your creative side. Be it affirmations to help you cope when things get tough, taking photographs, painting, singing or dancing.
5. Never ever be ashamed by how you think others see you. The more people who witness our everyday struggles, the more people will empathise with our situation and the more comfortable we will feel about ourselves. It’s about educating the general public.
At the end of the session the incurable optimist Paul Mayhew-Archer stood up and thanked us all for a wonderful presentation and much to my surprise named me personally as his source of inspiration. He also invited me to take part in a podcast with him the following day as part of a Movers & Shakers Barcelona Special which you can listen to on Spotify or Apple podcast.