How it all started
I was diagnosed with Parkinson’s in 2009 and I did not know much about the illness then. Several years later not much had changed, when I got the opportunity to participate in the 2013 WPC (World Parkinson Congress) in Montreal.
The sheer size of the event with 3500 participants, many of them PwP at all states of the illness was impressive, but what struck me even more was the spirit of optimism – no sitting and waiting but come on, take on the fight!
Attending this event became my life changer. It took only these four days in Canada to show me every facet of Parkinson’s: its cruel consequences but surprisingly also many positive aspects and above all, the great community of people all seemingly dedicated to join me on my own journey with Parkinson’s. And I met most remarkable people on the way of whom I briefly mention two PwP: There is Ray whose PDwatch4U, a solution to optimise medication was presented at our January event and John, who created an amazing set of apps called parkinsonsmeasurements.org.
From now on my journey was directed towards the goal to contribute to the fight against the illness.
Reflection – the events
My personal background in computer science and maths influenced the topics I chose: I am very much interested in technology itself and its possibilities to support living with Parkinson‘s.
With continuously increasing ‚intelligence‘ of devices, a wide field of possibilities for novel use cases opened up: it was now no longer just about tools to make life easier, but also to control the disease and, beyond that, to create the best environment to treat the disease. And that’s how we organised the three events: ISs are enablers for managing the illness, the daily life and providing data for a personal, optimal treatment.
We are still a tiny group but pursue high aims: We want to become a knowledge and information hub between Parkinson’s patients and R&D. With the organisation of the three events we reached one milestone, but only the first, very basic one. We need to
- Watch the market to find interesting solutions
- Build a knowledge base for Devices, apps, gadgets and sensors that are used in Intelligent Solutions
- Find people with appropriate knowledge and enthusiasm to join or support us
- Inform the PD community through events, publications and our website and
- Stimulate development of IS
This sounds very ambitious, but bringing together the patients, who are the prime experts of the needs – or in technical terms you may say the ‚requirements’ – and the knowledge about possibilities, we should be in an excellent position to accomplish that.
Connection to WPC – Closing the Circle
I did not have everything in my mind after the 2013 WPC, but I certainly focussed from being ‘patiently waiting’ to becoming ‘impatiently active’, now driven by a goal. And I wanted to experience this ‚we can do it’ feeling of the 2013 WPC again. Unfortunately I was not able to participate in the WPCs in Portland (2016) or Kyoto (2019), but was determined to participate in the 2022 WPC in Barcelona, when – even better – I was offered to become an ambassador for the congress.
This development was a boost, as I am now able to use resources I would not be able to address otherwise. It also stretched the reach of our ideas by being active contributors to the congress. We are determined to give technology the place it deserves, find people to submit papers and have our own booth at the congress.
Of course, there is much to be done to make all this happen, but we‘re not frightened to do so.
On the way there is the WPC Virtual Congress from May 17 to May 21. It is a great opportunity to experience advancing science, care and living with Parkinson‘s. A year before the ‚real‘ WPC this may be seen as a mini version, but, in fact, it is a full blown congress – don’t miss out on it!
Last but not least we invite you to participate in a project of a completely different kind: We will create a piece of art that will be unveiled and subsequently sold in an auction at the Barcelona event. Why do I mention this here? YOU can and should participate. It will be easy: it just requires taking a picture and – optional – writing a statement or a short story. And the best: the money will be donated to a research project in the field of intelligent solutions. All necessary information will soon be published on our website. We keep you informed.
What’s left to do
We are going to ask you about your experience with this series of events; a survey will be sent out to you shortly. It would be much appreciated, if you could fill it in. It also ensures that you will be informed on any of our future activities.
Being a tiny group of people with big plans we can use any help we can get: even if you will just occasionally inform us about interesting news – just let us know.
… and finally
At the end of the series of events I want to thank everyone having contributed over the past months:
- The team that planned and organised the events – Brendan, Jo, John, Liz and Marc, to name the ones who took on the biggest workload
- The eleven outstanding speakers
- Rory and Paul for their personal contributions
- DRIG and Parkinson‘s UK for support and Communication Infrastructure
- And last but not least you, the participants, for your interest.
Good bye, and all the best, from all of us.