A disease, not a death sentence (From The Northern Echo)

A disease, not a death sentence

11:14am Friday 12th February 2010 in

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Barry Nelson investigates a condition that blights the lives of thousands.

JUST five years ago, Alistair Campbell (not the one you think) ran The Great North Run to raise funds for the Parkinson’s Disease Society. Now he struggles to walk from A to B and needs crutches to help him on his way.

But the 66-year-old founder of the Darlington branch of the society is still doing his utmost to help others diagnosed with this much-feared, and widely misunderstood, disease.

Sitting down, you wouldn’t know that he has Parkinson’s, as there are no obvious signs – until he tries to get up and walk across the room. Difficulty in walking is one of the most common symptoms of a condition which affects thousands of people in the UK.

What really gets his goat is when people mistake his unsteadiness on his feet and his difficulty in walking for the signs of an alcohol problem.

“There have been times when I have heard people behind me saying, ‘look at him, he must be drunk’,” says Alistair, of Darlington, who was a passionate runner before his illness gradually brought the shutters down on his chosen sport.

But he says no two sufferers have the same symptoms. He was 45 when the first problems started, but it can affect people in their 20s.

“Early on, I started to trip up quiite a lot and found myself taking very short stops, with my arms down by my side,” recalls Alistair, who was running a vehicle hire company in Darlington at the time. “I sometimes freeze up and find it very hard to start moving again. I can still talk, but I simply can’t move for quite a while.”

In common with other people who have to live with the unpredictable symptoms, Alistair relies on medication to keep his condition under a reasonable degree of control. “I have to take four tablets every four hours and without that medication I would be a wreck,” he says.

Thankfully, there are many effective drugs, with more coming on to the market every year.

The level of support from the NHS varies from place to place, but Alistair and his fellow committee members are united in praising local services.

“The staff at the movement disorder clinic at Darlington Memorial Hospital are excellent. We all get tremendous support from them,”

says Alistair.

But the doctors and nurses can only do so much. And one of the main reasons Alistair founded the society’s branch in Darlington – after a meeting at the Memorial Hospital in 2004 – was to provide practical support to local sufferers. Since then, he has seen membership climb to 120, with the group offering everything from emotional support and advice to some much-needed company.

It also subsidises regular physiotherapy sessions for members, organises social and business meetings, raises funds and tries to increase public awareness of the disease.

“It is not just the sufferer who needs help,” says Alistair. The carer has got to be helped as well. Carers are in a difficult position because they may be in good health, but their daily routine is controlled by their partners. The main aim is to be here for people. Give them support in any way we can, particularly if they have just been diagnosed.”

SHEILA WILKINSON, 68, of Barnard Castle, whose husband, David, is branch chairman, went to her doctor ten years ago after feeling unwell for years, and was deeply shocked to be told she had Parkinson’s. “He just came out with it. It was very difficult to come to terms with what he was telling me.”

As a keen walker used to covering ten miles a day, she soon found herself unable to manage more than two miles. “It is just frustrating that you can no longer do what you used to do,” says Sheila, who takes about 20 pills a day to control her symptoms.

Her husband says her condition means that mornings have been cancelled.

“Unfortunately, it takes until 11.30am before she can face the world these days,” says David.

Alistair is keen to scotch one popular misconception. “A lot of people think Parkinson’s disease is a death warrant and it is simply not true.

“The best thing we can hope for is to achieve greater recognition for Parkinson’s disease and greater tolerance on the part of the general public.”

■ For more information, call the Parkinson’s Disease Society helpline on 0808-800-0303 or visit parkinsons.org.uk

Chemical that is the missing link

THERE are probably at least 500 Parkinson’s sufferers in the Darlington area alone and thousands across the North-East and North Yorkshire.

Nationally, the Parkinson’s Disease Society estimates that there are 120,000 people with this progressive neurological condition.

Named after Dr James Parkinson (1755-1824), who was first to identify the disease as a specific condition, it is caused by the loss of nerve cells in the part of the brain that produces a chemical called dopamine. Dopamine allows messages to be sent to the parts of the brain which co-ordinate movement.

The main symptoms include a tremor, slowness of movement and stiffness or rigidity of muscles. It can also affect movements such as talking and writing.