A Love (of Cycling) Story
‘Bike to Barcelona’ in 2023, was an initiative that saw teams of people living with Parkinson’s, cycle from the UK, Spain and Italy, arriving in Barcelona together to attend the World Parkinson Congress (WPC) being held there. The initiative was such a success, that a committee has been formed to develop the ‘Pedal to Phoenix’ concept for 2026 when the next World Parkinson Congress will be held there.
The organizing committee for Pedal to Phoenix 2026 includes Alison Anderson (UK), Rune Vethe (Norway), Geoff Constable (Australia), and Steve Iseman (Canada). Alison reflects here on the story so far…….
Providing the opportunity to meet other people living with Parkinson’s from all around the world is a unique experience that attending a World Parkinson Congress provides. It is this element of the congress that has had the most profound effect on me.
The 5th World Parkinson Congress in Kyoto, Japan in 2019, sparked something rather special in my Parkinson’s journey. I met so many wonderful people, many of whom, I now consider to be friends. It was in Kyoto that I met Rune for the first time. We chatted and I learned that he was ambassador for the Congress. We discovered we shared a diagnosis of Parkinson’s, a love of cycling and boxing. It was at the WPC in Kyoto that I also met Geoff. We enjoyed a brief conversation where we discovered a shared love of cycling and a shared sense of adventure.
I enjoyed the WPC in Kyoto enormously, educationally and socially it ticked a lot of boxes for me, and knew I wanted to be involved in the next one. I was thrilled to be appointed as an Ambassador for the 6th World Parkinson Congress which was to be held in Barcelona in 2023 and delighted to learn that Geoff was also appointed as an ambassador for this Congress.
Having undertaken and thoroughly enjoyed a number of long distance cycle challenges since my diagnosis in 2015, I had a slightly crazy notion that I might cycle to Barcelona to attend the World Parkinson Congress in 2023. I began to explore the idea. I recalled my conversations with Rune and with Geoff and so messaged Geoff at his home in Melbourne, Australia and Rune in Norway. Neither suggested I was crazy and without hesitation they agreed to take part.
I mentioned this slightly crazy idea at a WPC Ambassador meeting. All of a sudden, the idea that had sounded crazy a short while ago, now seemed like it might just be possible and ‘Bike to Barcelona’ became the focus of much of our time for the following twelve months. During this time Steve contacted me from Canada and he too committed to joining us to cycle 1,600km from Brighton to Barcelona without having ever met any of us previously but having completed an impressive 8,000km Cross- Canada cycle the previous year.
We could have found many reasons not to pursue our ‘Bike to Barcelona’ idea.
We did not allow our geographical distances (UK, Norway, Australia and Canada), nor the fact that we had only met once, stop us from planning to cycle together.
Barcelona. We were not deterred by the fact that Rune, Geoff or I had never cycled 1,600km before, or that we needed to train hard over many months to get fit enough to take part in this kind of challenge. This was not going to be easy. Nothing about what we were planning was easy but but we weren’t looking for easy and we found it invigorating, exciting and fun.
We were each excited by the possibility, inspired by each other and wanted to do something to that would keep us motivated to exercise regularly. We also wanted to demonstrate that exercise could be fun and to inspire others to enjoy the benefits that exercise brings for people with Parkinson’s.
The geographical and time differences between us meant that there was no easy way to train together. The snow that accompanies the Norwegian and Canadian climates in winter meant that outdoor cycling wasn’t an option for many months at a time. Getting on my bike and experiencing the great outdoors is one of life’s great pleasures. Put me on an indoor bike trainer and cycling becomes a chore. That was until I was introduced to Zwift, an App that promises to ‘make indoor cycling fun’ by providing the platform from which people living anywhere in the world can train together from the comfort of their own homes.
Using Zwift as their online platform Rune and a fellow cyclist (also called Rune), set up ZWAP (Zwifters Against Parkinson’s), an online cycling club for people with Parkinson’s. ZWAP promotes cycling within the Parkinson’s community and has to date attracted nearly 80 cyclists with Parkinson’s from around the world to join and to train together. Regular exercise has huge benefits for people living with Parkinson’s. ZWAP members have cycled hundreds of thousands of kilometres together. As friendships developed and Strava statistics improved, indoor training has indeed become fun.
Many of the Bike to Barcelona team ‘met’ each other via ZWAP during many hours of indoor Zwift training before meeting for the first timeline person in June 2023 when our group of 19 people, nine of whom live with Parkinson’s set off from Brighton on the South Coast of England and cycled 1,600km, arriving in Barcelona to attend the 6th WPC.
It was an incredible experience and an incredible achievement. It was life affirming, fun, exhausting and exhilarating at the same time. We met the Italian and Spanish teams who had also cycled to Barcelona and celebrated our achievements together at a lively welcome party hosted by the Catalan Parkinson’s Association.
Following the World Parkinson Congress, we each returned to our respective homes and families but it wasn’t long before we each started to miss having a goal to encourage us to keep exercising. We missed the preparation, the planning, the fun and the excitement that is part of being involved in such an adventure and it wasn’t long before our next adventure was being planned.
Via the ZWAP group in Norway, the two Rune’s soon set about organizing a cycle challenge for 2024. Without hesitation most of us signed up again. This time we were a group of twenty, thirteen of whom are living with Parkinson’s. We trained for months,
indoors via the ZWAP group and outdoor where possible. We have recently completed a 635km cycle through Norway. Again, it was an incredible experience. Norway is a beautiful country, full of beautiful people. Since our return from Norway, we have continued to exercise together, to enjoy the benefits that this brings for our minds, bodies and souls and perhaps it is not a surprise to hear that we already have plans in place for next year’s cycling adventure.
We are planning now for cycling together to Phoenix in the ‘Pedal to Phoenix’ program for the 7th World Parkinson Congress in 2026 and will post more details in due course.
Alison Anderson (UK) is a WPC Parkinson Alumni Ambassador. Alison spent more than 30 years working in the nursing and healthcare management space. It was after being diagnosed with Young Onset Parkinson’s in 2015 she took up cycling for pleasure, adventure, and to stay socially connected to others, which helps her overall well-being. Alison was a leader for the Bike to Barcelona team from the UK, and she was a moderator at the World Parkinson Congress in Barcelona. You can learn more about the Bike to Barcelona experience by clicking any of these links: Ambassador Video, The Norwegian Perspective (Video), or reading the WPC Blog about their journey to Barcelona.
Follow Alison’s blog at: Ramblings of a Cyclopath and catch her on 𝕏: @alisoncyclopath.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®