“When I was diagnosed with Parkinson’s, my first thought was whether I’d ever play football again.”
Joe Gregory is from a footballing dynasty. Both his father and brother, Jack and John Gregory, played professionally, with John playing for England in the 1980s.
Joe himself has always loved the beautiful game; playing regularly until he was in his forties and life got busy but always planning to take it up as a hobby again.
However, in September 2018, Joe noticed that his left leg was dragging behind his right while out on a run. He chalked this up to an injury and took a few days off from his exercise regime.
“Resting didn’t seem to help, and I couldn’t think of how I might have injured it” Joe remembers, “I started to try to figure out what was wrong by searching on Google but it was difficult to explain the symptoms. I ended up typing things like ‘my body won’t work properly’ which brought up all sorts of scary possible results.”
Eventually, when things weren’t improving, Joe knew he had to visit the GP and wondered whether he was going to need a hip replacement. Instead, the GP referred him on to a neurologist.
“The referral to the neurologist came through very quickly and so that was alarming as usually you have to wait,” Joe says, “The neurologist performed an examination and then asked me to close my eyes and touch my nose with my index finger. I wasn’t able to do it.
“She told me I had Parkinson’s there and then. I thought it would take much longer to find out. I asked my partner to come and pick me up and shed a few tears in the parking lot while I waited. I remember what hit me the most was thinking… But I would say I mostly took the news well; I was just relieved to have a diagnosis.”
According to the charity Parkinson’s UK, around 166,000 people live with Parkinson’s in the UK. It is a progressive neurological condition, and symptoms start to appear when the brain can’t make enough dopamine to control movement properly. At the moment, there is no cure for Parkinson’s but there are some treatments available to help relieve the symptoms.
As the world shut down during the 2020 Covid-19 pandemic, Joe, who had now been diagnosed with Parkinson’s for a year, decided to challenge himself to see what his body was still capable of by performing trick shots in his back garden.
“I live alone so there was no one to stop me messing about,” Joe recalls, “Filming the videos made me realise that I could still do so much and so when lock down lifted, I decided to find out if there were any Parkinson’s football teams near me.”
Joe found the Fighting Fit Football club, a team of people living with Parkinson’s who meet at Watford FC’s training dome every week.
Here, he found friends and a passion that has helped hundreds of people across England.
“Walking football levels the playing field so that people with neurological conditions can still play against those without them,” Joe explains, “As the name suggests, players must walk, not run and they cannot header the ball or use clip shots – shots that lift the ball off the ground – which is a shame for me as someone that likes trick shots!”
Joe became passionately involved in the sport and has helped to set up walking football clubs across England.
“I always make sure that wherever a club is being set up there is a café on the grounds or nearby so that people can socialise afterwards. You can see the way it benefits people; bringing them joy and building confidence. One of our players is in his 80s and most us thought we wouldn’t be playing football at this age, yet here we are, even with a neurological condition.”
Since 2021, Joe has played walking football for England and has been able to travel across the world for competitions.
“Playing for England at the Ray Kennedy Cup has taken me to Nigeria, Norway, Singapore, USA and Malta. I never thought I would travel so much in my life; my Parkinson’s diagnosis was the turning point for me. I stopped saying no to things and just did it.”
Joe applies the same attitude to his involvement in research.
“Walking football has been great for my mental wellbeing and fitness but getting involved in research gives me another purpose.
Joe decided to put himself forward for research projects at UCL and other organisations and has now taken part in 12 different studies. These range from medical trials to advisory panels and from genetic studies to treatment research.
One trial he has been involved in is The Edmond J Safra Accelerating Clinical Trials in Parkinson’s Disease (EJS ACT-PD) initiative which was set-up to improve how Parkinson’s research is delivered. Over 90 experts, including people affected by Parkinson’s, have come together to design a new trial that is smarter, faster, and built with participants in mind.
Research Project Manager Georgia Mills (Department of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology) explains: “The EJS ACT-PD trial is the first in Parkinson’s to use a ‘multi-arm, multi-stage’ (MAMS) design to speed-up how we get answers. This means it can test multiple treatments at the same time, remove those that don’t work, and add promising new treatments within the same trial structure. The trial aims to find a treatment that can slow or stop Parkinson’s progression. People affected by Parkinson’s and diverse members of the public have played a key role in making the trial accessible and meaningful. Participants will be able to take part from home if they choose and the trial assessments were selected to reflect the symptoms that matter most to the Parkinson’s community. By working together in this way, the trial aims to offer a positive experience for everyone involved.”
Dr Jennifer Foley, Consultant Clinical Neuropsychologist & Honorary Lecturer (UCL Queen Square Institute of Neurology) has also worked with Joe on a steering group for a Parkinson’s UK funded project entitled ‘Matching mental health support to the needs of people affected by Parkinson’s: patient and cost benefits’. The project aims to develop an effective programme of evidence-based psychological interventions for mental health issues in Parkinson’s that can be easily delivered by non-experts.
Dr Foley says: “It is essential that people with Parkinson’s and their family members or unpaid carers are involved in research to ensure their voices are heard, and the interventions developed meet their needs.
“Ultimately, the success of our research depends upon the kindness and goodwill of our participants. To date, we have recruited nearly 100 participants with Parkinson’s to trial our new group-based specialist psychological interventions. They have given up their time to travel to Queen Square in London to attend the group sessions and to meet with the researchers to give feedback on the interventions. This has been critical in helping us understand the clinical- and cost-effectiveness of the interventions, which is a crucial first step to improving the availability of these interventions to all people affected by Parkinson’s, and improving mental health support, across the UK.”
Just as football showed Joe what he was still capable of and fostered a sense of community, engaging in research has allowed him to gain deeper insight into himself and his Parkinson’s diagnosis.
“Researchers are passionate about what they do and are receptive to answering any questions you have about the trial and your condition,” he says, “It’s an opportunity to learn so much about your body and what’s going on and to be positively monitored.”
For anyone who is inspired by Joe’s story and wants to get involved with research, Georgia says: “There are lots of ways that people with Parkinson’s can be involved in research, from taking part in a clinical trial, to helping design one. Every person that contributes makes a huge difference to helping us find the answers that matter to the Parkinson’s community.
"If you are interested in finding research opportunities, you can sign up to the Join Parkinson’s Research registry. A secure, online platform which aims to connect people with Parkinson’s to research that matters to them. You can easily register your interest online.”
Joe adds: “There’s no cure for Parkinson’s at the moment but the way we can fight it is through research. Researchers can’t find better treatments without us; we need to get there together. Taking part is something you can do to show that you have faith that one day a cure will be found; and what an amazing thing that is to be hopeful about.”