John Roche, 60, has told of the shock at the diagnosis of the incurable condition, which he and doctors initially had down as a “pinched” nerve. His pain got worse over three years and a neurologist eventually spotted the condition when John lost control of his facial muscles.
Speaking today to Liverpool Echo, the father of two said: “It was a shock obviously because I’d gone with a problem that I thought was a minor surgery.
“At that time, I didn’t even know Parkinson’s was an incurable neurological condition.”
Around 145,000 people in the UK live with Parkinson’s, a condition in which parts of the brain become progressively damaged over many years.
John, from Lydiate, Merseyside, occasionally struggles with tremors, slow movements and inflexible muscles.
He said: “When you’re on, you can function reasonably normally. When you’re off, in my case, I freeze to the ground, I can’t move. If that happens to me in the middle of the road, which it has, I need people to understand I’m not drunk, which is something people often say.
“Like most impairments, we need to be more aware of it and understand people’s needs, because we’re no longer the old man tremoring in the corner. No, we’re living our lives, we’re in society, but at the click of a finger, your condition’s described as either on or off.”
World Parkinson’s Day, which was on Monday, encourage people to show more awareness, understanding and patience to people with the condition.
John, a quantity surveyor with a mathematics background, takes 14 pills a day to manage his symptoms but these signs vary over time.
Although John’s losing the ability to understand the meaning of numbers he writes down, other activities come just as easy as ever, including skiing, which he thought he’d never do again.
In December 2019, John co-founded Northern Lights, a football team for people with Parkinson’s. He said “it’s unbelievable to see people shuffle out onto the football pitch” to play a game, but it’s so much more than a sports club.
Speaking of the first times he saw his teammates on the pitch, he said: “Nobody was talking about football, they were talking about Parkinson’s.
“It was a self-help group that brought people out of their shell to talk about their own condition. One guy has had Parkinson’s for 15 years and we were the first people he had spoken to.”
Dr Beckie Port, head of research communications at the Parkinson’s UK charity, said: “Parkinson’s is complex. There are over 40 symptoms which vary from freezing and rigidity to anxiety and sleeping problems.
“It affects everyone differently and no two people present with the same symptoms. Many people tell us, they experience symptoms related to their Parkinson’s for a number of years before a formal diagnosis, but the dots were never connected.
“To date there is no definitive test for Parkinson’s, which is highly problematic, nor a cure or treatment to stop Parkinson’s progressing. But the earlier people are diagnosed in their Parkinson’s journey, the sooner they can receive help to manage their condition. Parkinson’s is the fastest growing neurological condition in the world so we urgently need to fund more research, to better our understanding of the causes, signs and treatments of this degenerative condition affecting 145,000 people in the UK.”
