'My battle with Parkinson's and living life to the fullest'

Gainford’s Neil Russell has lived with Parkinson’s disease for the best part of a decade. He spoke to reporter Alex Metcalfe about his experiences as he raises money for research into the condition on the eve of his 70th birthday

NEIL Russell is less steady on his feet nowadays but no less jaded. The 69-year-old retired clergyman was diagnosed with Parkinson’s disease in 2009.

He struggles to type now, needs a stick to get about and the illness has robbed him of his clear diction.

However, the key to living with Parkinson’s disease is adaptation and the Gainford grandfather-of-five is tackling it the way he knows best.

He says: “People disagree but I think in order to cope with something you need to understand it properly and that’s the case with Parkinson’s.

“I feel I need to know as much about it as I possibly can to live as full a life as possible.

“It’s very easy with progressive diseases to have a setback and think I cannot do this anymore.

“You have to find a way of living with it and develop activities and ways of living with what you are capable of doing.”

Mr Russell moved to Teesdale from Lincolnshire, where he was a priest in Stamford.

He continued to play an active role in the church in Teesdale and jumped into village life with both feet by joining the parish council in the years following his diagnosis.

It wasn’t long after the turn of the century when Mr Russell and his wife Kathy began to notice changes in his general health.

“I can probably go back five years before that diagnosis and recognise symptoms,” says Mr Russell.

“I was getting tired, losing my speech and had an expressionless face.

“It was a relief when we came back that we knew these symptoms had a common focus which was Parkinson’s.”

The disease affects about one in 500 people and is caused by a loss of nerve cells in the brain leading to tremor, slow movement and stiff inflexible muscles.

A trigger for the disease remains unknown but treatment is available.

Mr Russell adds: “Sometimes you end up with symptoms like stiffness and you end up too stiff to talk – that’s been a major problem for the last 30 years as I have relied on my voice for public speaking.

“I have to work hard on that to keep it going – it is, perhaps, the most frustrating part for me.”

Tackling Mr Russell’s illness began in earnest post-diagnosis with a wide range of specialists and healthcare staff called in to help him.

Charity Parkinson’s UK were also quickly in contact to offer guidance and support.

Mr Russell adds: “The help I’ve received from the NHS has been absolutely wonderful. From the surgery in the village who are very approachable to the consultants at Darlington hospital.

“I have consultations with two Parkinson’s specialists, an occupational therapist, a physiologist, a speech and language therapist and a dietician.”

Everyday life with Parkinson’s requires careful monitoring and a sizeable dose of daily medication.

Diet is important as swallowing can become difficult and learning to cope with deteriorating mobility requires a pragmatic approach. Mr Russell says: “I overbalance and fall regularly but I do not flail about. I gently flop down – you can cause less damage to yourself that way.

“One of the main difficulties is it’s not consistent – one day I can sail through another day I need help doing various things.”

Technology has helped Mr Russell negate some of those mobility difficulties with dictation on his mobile phone replacing typing emails.

Mrs Russell praised Gainford’s villagers for helping her husband when he’s struggled without being overbearing and patronising.

Medication has helped Mr Russell remain active.

In 2013, the couple took the opportunity to take a cruise around the world with Mr Russell acting as volunteer chaplain for the crew and passengers. It was there they found a dozen people who were either living with or caring for someone with Parkinson’s and shared their experiences. With his 70th birthday fast approaching, Mr Russell is aiming to raise £2,000 to support the work of Parkinson’s UK and help others who may have the disease.

“The sooner you can reach a diagnosis and start medication, the better,” he adds. “If you put it off you might be really depriving yourself of the help that is available. The idea of fundraising is for education of what Parkinson’s is, to provide support for patients and for important research.”

To donate, go to: https://goo.gl/LXYnpu