Biking to Barcelona
....and collecting Parkinson’s data along the way
Next week I shall be attending my first World Parkinson’s Congress in Barcelona and I’m really looking forward to hearing about the latest research and hooking up with a global community of Parkies. But I’m beginning to feel a bit embarrassed about the fact that I shall be arriving on an Easyjet flight - which seems a bit of a cop out compared with the ways some other attendees are getting to Barcelona,
People like Neil Russell, who has been running from London to Barcelona, effectively doing a marathon a day, raising money for Cure Parkinson’s and Parkinson’s UK. Neil and I are quite similar - roughly the same age, he diagnosed five years ago, me four - but there’s one big difference. While he seems to be running constantly - John’o’Groats to Land’s End was a previous outing - I am incapable of anything much more than a brisk stroll.
As for the 50 or so people - more than half living with Parkinson’s - who have joined the Bike to Barcelona, I am in awe of their stamina, as someone who needed a lie down after a four mile round trip on my bike last Sunday. Teams departed from various locations across Europe, with a healthy UK contingent leaving from Brighton.
Among them was Parkinson’s UK chairman Gary Shaughnessy, an.inspirational fundraiser who has raised more than £500,000 since he was diagnosed with the condition in 2015.
The team have been training for the past year and lead organiser, Alison Anderson, says the aim is to promote a message about the importance of exercise in managing Parkinson’s. “As someone who lives with Parkinson’s, exercise is so important to my wellbeing and engaging with the Parkinson’s community inspires and motivates me to keep exercising.”
The riders are also taking part in an exercise which is seeing data collected about their symptoms along the way. They are wearing the Apple Watch and using an app called PD Strive created by Californian firm Rune Labs which I wrote about last year.
The company wiIl be analysing the data to see what it says about the impact of exercise on the riders’ Parkinson’s symptoms. In effect, the riders are also road testing the StrivePD app and how effective it is in delivering useful data both to physicians and to people with Parkinson’s.
While I am not engaging in anything like as strenuous an exercise regime as the bike to Barcelona team, I am trying out the StrivePD app too. But I’m also experimenting with a far more complex rival system, PD Monitor, which involves wearing five sensors, one on each limb and one on a belt around my waist.
Next week in Barcelona, I will try to assess what each system shows about my Parkinson’s symptoms, and how they respond to my medication, diet and exercise. Finding a better way to assess people with Parkinson’s remotely is now a competitive field and at World Parkinson’s Congress I will be on the lookout for stories about which technologies are winning in this and other fields.
Rory, my friend Gillian Sharpe is cycling to Barcelona, raising money for Parkinson’s Research and volunteering at the conference. Her journey started from Stirling 🏴. If you come across her at the conference say hello 👋 and well done on her huge effort. 🚴🏻
On Friday 30th June at 8pm in the UK Alison Anderson from Cure Parkinson’s & Gary Shaughessey from Parkinson’s UK will speak to the Mayor of Medway via zoom. The Mayor of Medway will be at a pre World Parkinson’s Congress event in Rochester with WPC attendees and others, including Professor David Wilkinson from the NEW Parkinson’s Centre for Integrated Therapy, Jon Stamford a long-standing supporter of Cure Parkinson’s and members of the Parkinson’s UK: Medway Working Age Group.