My name is Keith Wilson and I was diagnosed with Parkinson's in 2019 receiving confirmation from the DaTSCAN one week before the first Covid lockdown.
Parkinson's is the fastest growing neurological condition in the UK and currently affects over 150,000 people. It is a progressive disease for which there is no cure. The cells in the brain that control movement are slowly eroded by invading enzymes, leading to tremors and up to 39 other symptoms.
During the first lockdown I resigned myself to a sedentary life without adventure and set out to discover as much as I could about the condition.
At the first easing of lockdown I discovered the power of adrenaline to replace the dopamine I was losing, at least on a temporary basis through rock climbing and fast downhill cycling. Post Covid, my consultant confirmed that adrenaline was chemically very similar to dopamine and said that roller coaster rides would be good to try.
A holiday in Florida with 14 year old twin godsons proved this to be correct and my wife commented that some of the rides were virtual and that it might be worth trying to replicate the experience with VR headsets.
This was a revelation to me and I still find it difficult to understand why no-one had pointed out this to me at diagnosis. At the time an internet search showed that there were research articles on VR and dementia and strokes but nothing on VR and Parkinson's. By this time my battle with Parkinson's was attracting some attention and I began to give talks on the value of exercise, singing and VR in combating the effects of the disease.
When Parkinson's UK launched their activity grants scheme I applied for a grant to use VR for exercise classes. This was initially turned down. By then, however, I had become convinced that others could be helped and crowdfunded the purchase of ten headsets. At this point I applied again for funding and Parkinson's UK agreed to fund two 8 week cohorts of free classes.
The trial was very successful with participants saying that they felt energised, more confident, more mobile, dexterous and balanced and had discovered a new interest to compensate for some of what had previously been lost. Activities such as Zumba, boxing, Tai Chi, ice climbing and world travel can all be undertaken in the virtual world.
The project is now into its second academic year of provision and larger scale research is currently being published which endorses our findings (eg a report from Spain which states that Parkinson's patients trying to exercise on static cycles can maintain concentration for longer and have increased benefits when using VR headsets, giving a statistical confirmation of our 'anecdotal' findings.) A start up company is also now pioneering the use of augmented reality (AR) headsets and are engaged with Parkinson's UK and Robert Gordon university in a study with 60 participants.
We have much in common with this company, including a belief that AR or VR may be a better long-term strategy than drug therapy. I currently take just one tablet which acts as an enzyme blocker and a dopamine receptor enhancer for daytime use.
Our VR classes are run at Vixi Wellbeing support under the guidance of Victoria McFaull who has considerable experience of working with different long-term medical conditions. While Parkinson's remains our main focus we have also seen interest and commitment from MS, dementia and MND clients.
From January 2025 we will also be able to offer a loan out of headsets with tutorial support thanks to further support from Parkinson’s UK. I currently try to combine the VR world with real challenges, This year I have completed the Thames footpath, the Cotswold Way and the Grand Union Canal in the virtual world and a cycle around the Zuiderzee, the Alpine Haute Route and Scotland's West Highland Way in the real world. Parkinson's Europe included me in their list of '12 people going the extra mile for Parkinson's (3 from the UK).
Recently I have been to the summit of Everest, climbed the Dolomites and been to the summit of the Matterhorn to see how it compared with my real life experience of 35 years ago.
We recently demonstrated our VR systems at Middlesbrough Town Hall as part of the International Older Persons day activities and followed up with a full day demonstrating at the Parkinson's UK National Conference and AGM.
My aim is simply to try to spread the word about the potential benefits of using VR to those with neurological conditions, especially Parkinson's. I work as an unpaid Parkinson's UK volunteer and post most of our updates on the Darlington Parkinson's Support Group Facebook page in my role as chair of the group and Facebook administrator. I would be very happy to talk to organised groups throughout our region.
