John has lived with Parkinson’s for 11 years, and along the way has faced challenges in public that highlight why it is so important to raise awareness of the condition. Here he shares his experiences and how, in spite of them, he can still the lighter side of life.
When John first began experiencing a stiffness in his left arm, his GP diagnosed a trapped nerve. But 6 months later, the stiffness had got worse rather than better and he was referred to a specialist. “Within a couple of minutes of meeting him, he told me I had Parkinson’s," John says. "I was completely shocked. I thought it was an old person’s disease that you died from. I was only 46 at the time.”
After a period of coming to terms with the diagnosis, John joined his Parkinson’s UK local group. He then threw himself into establishing a younger person’s group in his area with other working age people with Parkinson’s and began fundraising so the group were able to subsidise activity holidays for people with the condition.
I’m very lucky though. I have a very close family unit...some very good friends...and a fantastic Parkinson's UK local group. They are my support network.
Living with Parkinson’s though, has of course been challenging. Like many people with the condition, John can recall several incidents with the public that have been very difficult. An experience on a train was particularly distressing as John explains. “A guard asked to see my ticket and I told him it was going to take some time for me to get my ticket out. He replied, ‘More like you’ve had one too many.'” This was just a few weeks after a different guard on the same train had told John to hurry up and get a move on as he was trying to board. “The interaction with the guard was soul destroying, and when I got home I burst into tears.”
“It’s bad enough having Parkinson’s and all the symptoms that go with it like anxiety, depression, and being unable to do simple everyday tasks such as dressing and eating, but having your confidence knocked by people accusing you of being drunk is awful.”
“I’m very lucky though," John admits. "I have a very close family unit with my wife, 3 adult children and my 1-year old grandson - not forgetting my border terrier, Millie! My sister and her family live just down the road. I have some very good friends and am very blessed to have such a fantastic Parkinson’s UK local group. They are my support network.”
Getting out and about
3 years ago, John gave up his driving licence. “My absolute passion is the arts. I live in a village outside of Hull and in 2017, Hull was the UK City of Culture. I had the most brilliant year as a volunteer, but I over did it and was completely exhausted by the end of it. As part of my role, I was doing a lot of night time driving. After a couple of incidents though, I realised my driving was becoming dangerous. I talked things through with my wife, and we agreed I should send my licence back to the DVLA.”
“Last summer I began struggling to walk, but I still wanted to get out, to see friends or go for a pint in the pub, so I bought a mobility scooter.” As a visible sign of his condition, John admits that at times it has had its downsides. “Sometimes I am capable of walking, so I can be embarrassed to drive into a shop for example, then park up and walk around. I’ve also had a group of people shouting at me when I’ve been out and about on it before.”
On a personal level though, the scooter has been really positive as it has allowed John to stay connected with friends and his community and his sense of humour has helped combat people’s reactions, as he explains: “You do notice people staring. I can see the lighter side of life though, so if I do see someone looking, I just wonder if I should offer them a lift!”
There is hope and over time I’ve realised that with the right support network around you, you can live a good life.
Having lived with Parkinson’s now for 11 years, John is reflective of what the condition has taught him. “Parkinson’s puts life in perspective," he says. "When I was told I had Parkinson’s, I thought, ‘That’s it, I’m going to die,’ but that is obviously not the case. There is hope and over time I’ve realised that with the right support network around you, you can live a good life.”
Understandably though, John is a huge advocate for raising the profile of the condition, “People need to be more aware and less ignorant of conditions like Parkinson’s. By raising awareness it will hopefully stop people with Parkinson’s experiencing similar situations to those I’ve been in.”
- John is just one of over 75 people living with Parkinson's who have shared their stories on an online UK map for World Parkinson's Day. Read them here and get to know Parkinson's better.