A dad of two was diagnosed with an incurable condition after feeling a "horrible aching sensation" in his left shoulder blade for three years.
Doctors initially thought John Roche's shoulder pain was due to a 'pinched' nerve, but a neurologist diagnosed it as Parkinson's when he was 50 years old. John 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."
What he hadn't noticed was the 'Parkinson's mask' he unwittingly wore as he lost control of his facial muscles. The man, from Lydiate, said: "The natural thing is to think that I'm upset about something or I'm angry, because I'm quite a light hearted person, but when you're on my side of the face, you think you're smiling and people generally don't tell you until eventually, those close to you will say, 'Is everything okay? You haven't smiled for a week'."
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Like many people with Parkinson's, John's first symptoms appeared long before the condition was on his radar. One of the very first signs - loss or reduction of smell, which affects 95% of people with Parkinson's - sometimes appears years before the famous telltale signs like trembling hands and slow movement.
People with the condition can experience any combination of more than 40 symptoms, and John takes 14 pills a day to manage them. The speed and order in which people's conditions deteriorate varies from person to person. Parkinson's is very much an on-off condition whose symptoms come and go, changing over time.
John, now 60, said: "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.
"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."
Parts of Parkinson's surprise John, a quantity surveyor with a mathematics background. Although he'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.
This is because exercise and mental stimulation open new neural pathways that help keep the brain strong and active. 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 previously told the ECHO: "Nobody was talking about football, they were talking about Parkinson's," he said. "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."
John shared his story ahead of World Parkinson's Day on Monday, April 11 to encourage people to show more awareness, understanding and patience to people with the condition as it can take them more time and effort to do things like make it to the toilet and back during a theatre interval.
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."
For World Parkinson's Day 2022, the charity Parkinson's UK is supporting two activities, chosen and led by a group of dedicated and passionate volunteers: Poems for Parkinson's and Light Up Blue for Parkinson's. You can find out how to get involved here.
