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Wednesday, 29 July 2015

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John Kane: ‘When I was finally diagnosed with Parkinson’s it was actually a relief’

‘WHEN I was finally diagnosed with Parkinson’s disease, it actually came as a relief to me.”

John Kane’s diagnosis seven years ago, at only 51, brought to an end years of scans, tests, and referrals; and years of feeling “not quite right” – but not being able to put his finger on it.

“Symptoms I’d felt for years but didn’t understand all became clear,” said John.

“I knew there was something wrong and needed to know what.

“Then I could decide what to do, how to treat it, and how to get on with the rest of my life.”

Whitehaven man John – a process worker at Sellafield at the time – felt what he now recognises were the first signs of Parkinson’s in Blackpool in 2004.

A talented darts player with the ability to have turned professional, he was representing Whitehaven’s Wellington pub in the finals of a national fours competition.

“All of a sudden, I became inconsistent which had never happened to me before. Completely out of the blue, the dart was not going where I wanted it to go; there was something wrong with my hand/eye coordination.

“We won, but my team carried me. I said to teammate Alan ‘Scanner’ Bone as we came off that I wasn’t right. Twelve months later, I couldn’t throw a dart.”

John’s symptoms continued: tiredness, restlessness, loss of strength – all without explanation.

“On my 50th birthday I ran two marathons back-to-back on a running machine to raise £4,500 for the air ambulance.

“My wife, Dot, thought I had over-trained, because I started suffering real problems with my strength and coordination.”

Following a long period of inconclusive tests, finally, with the help of Sellafield’s “fantastic” doctor Graham Atkins, John was referred to Newcastle’s Royal Victoria Infirmary where, within minutes, he was diagnosed with Parkinson’s disease in 2008.

Caused by a deficiency in dopamine – the chemical that controls everything about the body’s movement – Parkinson’s can affect how a person moves, laughs, smiles, cries, talks.

“The symptoms are so different in everyone. Most associate Parkinson’s with having the shakes, but only around 70 per cent have this tremor.

“In others, their body locks and they freeze on the spot; others have problems with expression and their face appears emotionless.

“There are around 20 side-effects and people usually get around 10. Many are painful and each fluctuates on a minute-by-minute basis. That’s what makes it so difficult to manage; you never know how you will feel.”

When John was diagnosed, he and wife Dot decided to bring forward his retirement plans.

“I left work about 12 months after I was diagnosed. I didn’t want to deteriorate in front of people who I worked with.

“Dot and I decided to do all the things we’d planned for retirement while I was able to: travelling the world, going to concerts, spending time with family. I knew I wasn’t going to get better, but I could manage my life and think positively.”

There is no cure for Parkinson’s, and the treatment is a delicate balancing act; the side-affects are often worse than the condition itself, says John.

“Compulsive behaviour is closely associated with the medication; whether it be out-of-control spending, gambling, even sex, often alongside feelings of depression.

“I have struggled with gambling – at one point I was betting money just to lose, then hit rock bottom when I did. Getting the right medication balance is absolutely crucial.”

As well as the physical symptoms, the social side of living with Parkinson’s can be difficult to manage. “Some people lock themselves away and I fully understand why. They feel discriminated against and want to hide away. Awareness is improving, but needs to be better.

“On one occasion, I was putting petrol in my daughter’s car and, because I can drag my foot when I walk, I was stopped by a police officer on the forecourt who suspected me of being drunk.

“There was a high-profile story too during the Olympics, when a man with Parkinson’s was unable to express the emotion on his face when everyone else in the audience was cheering. He was arrested on suspicion of being a terrorist.”

Despite his struggles on a daily basis, John treats his condition with humour – and inspirational pro-activity.

A union leader in his time at Sellafield and a current Copeland borough councillor, John has spent his life helping others – and has dedicated his recent years to helping those with Parkinson’s.

As West Cumbria branch chair of Parkinson’s UK, his goal is to reach as many people with the condition as possible.

“We have around 300 members, but I know there are many we haven’t yet reached.

“One in 500 people get Parkinson’s – and this number will rise as we get better with diagnosis.

“This week is Parkinson’s Awareness Week and we want to raise awareness of the help that is available, and be on hand to offer whatever support a person needs; whether that be pointing them in the right direction medically, or including them socially on the events that we put on.”

John has attended two World Congresses on Parkinson’s and delivers awareness talks in care homes and to women’s institutes and clubs locally.

“People with Parkinson’s are the best resource we have. If people can talk about it – which can be hard as it’s such an emotional subject – then the awareness will spread, and so eventually, will the understanding, and ultimately the finances to invest in research.

“I don’t think we’ll see a cure in my lifetime.

“While they don’t know what causes it, it’s very difficult to find a cure. I think there are a multitude of causes, and will need a multitude of cures.

“But as important as looking for a cure for Parkinson’s is, so too is caring as well as we can for those of us who have it.”

For more information on the West Cumbria branch of Parkinson’s UK, call John Kane on 01946 599135 or 07867 983989. Alternatively, for help and support visit www.parkinsons.org.uk, or www.nhs.uk/Conditions/Parkinsons-disease

Have your say

Remember playing against you in the 80s and I always wanted to be as good as you. Sad to hear of this but typically you are trying to do some good for others from it. Respect

Posted by Craig on 23 April 2015 at 07:34

John you are a 'Champiom' in every sense of the word. You are a tireless worker for all who suffer from this dreadful illness of Parkinsons Disease and an inspiration to all of your fellow sufferers.

Posted by Eddie Troher on 8 March 2015 at 09:43

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