'Not knowing what's around the corner'

Charles Sammut wakes up at 5 a.m. every day, rain or shine, to take a 50-minute walk. If the retired education officer leaves it any longer, the effects of Parkinson's Disease start setting in and his body stiffens up.

"I try to make the most of the time of day when I feel at my best," he told The Sunday Times.

Mr Sammut, 60, is one of around 1,000 Maltese believed to suffer from Parkinson's Disease, a progressive neurological condition affecting movement.

Although the illness is very much associated with the shakes experienced by Pope John Paul II in his final years, it does not affect everyone the same way.

The disease can manifest itself in balance problems or stiffness, which is what Mr Sammut experiences, making everyday chores - like buttoning his shirt, tying his shoelaces and knotting his tie - increasingly difficult.

Mr Sammut was diagnosed with Parkinson's just over seven years ago, when he was admitted to hospital with a heart problem. "I couldn't eat for around three days with the worry.

I started imagining what would happen to me.

There is no cure and you can never tell what's around the corner," he said.

The effects of the disease were very subtle in the first five years, but Mr Sammut started to degenerate two years ago. "Even getting out of bed is becoming harder," he said.

Although there is no cure for Parkinson's, medicines have been found to counter the effects. In sufferers, the production of dopamine, which coordinates the brain with the body's movements, goes down drastically, and medicines try to replace this important substance.

However, the medicines can have undesirable side effects, including sudden sleepiness, which means he cannot drive a car unaccompanied.

His wife admits that although their lives have not changed drastically since his diagnosis, she has to help him.

But Mrs Sammut, who still works as a teacher, said her husband is very active, and tries to do as much work as possible around the house, often preparing dinner for her when she gets home.

"Unless I push myself, I will end up in a wheelchair," he said, adding that his next project was to paint his home in Rabat.

The two are members of the Malta Parkinson's Disease Association, and Mr Sammut said it helped him tremendously to speak to other patients and share experiences.

"I felt very unlucky to have been diagnosed with Parkinson's at 52, but then I met people who were much younger," he said.

Association president Anne Downing pointed out that life for both patients and carers changes with Parkinson's. "There are challenges and heartache," said Ms Downing, who set up the local association two years ago.

Although many people believe Parkinson's is a disease associated with old age, an 11-year-old was recently diagnosed in Ireland, and Ms Downing said the youngest patient she had met in Malta was in his early 20s.

She said problems arose when the family's main breadwinner was afflicted by the disease.

Her involvement in Parkinson's associations in the UK started in 1979 when her mother was diagnosed with the condition.

"It did not occur to me not to continue when my mother died," she said.

When she moved to Malta six years ago, she was asked to help two patients, and started the work to form the association, which was set up two years ago. This year the association is planning to translate a 103-page informative book on Parkinson's into Maltese.

The association is organising an 800-metre walk in aid of Parkinson's in Sliema this morning, starting at 10 a.m. from Sliema Ferries, to raise funds for its projects.

More information can be found on http://maltaparkinsons.com .