Parkinson's disease 'like a thief in the night'

When Londoner Gary's grandchildren show him their latest book or picture, his lack of expression baffles them.

"They cannot see that I am smiling inside," he said.

Like an estimated 6.3 million people worldwide, including some 800 in Malta, Gary suffers from Parkinson's disease, a progressive neurological disorder caused by the destruction of nerve cells in the brain which can cause tremors, stiffness of muscles and slowness of movement.

"I do not smile very easily. My face is stiff and without expression," he admitted in a publication of the European Parkinson's Disease Association.

For Agnes, a 76-year-old from Hungary, fatigue is the worst symptom. "When it hits me, I have to lie down. I can only compare it to the exhaustion one gets after having a baby. During these times my brain doesn't work. Simple things, such as lifting the phone and making a call, become arduous."

Some patients hoped the disease would go away, others hid and refused to meet anyone, Anne Downing, president of Malta Parkinson's Disease Association, said.

"Parkinson's creeps up over a period of time, stealthily like a thief in the middle of the night. It does not go away, but stays, making increasing demands over time," she said. The daughter of a Parkinson's sufferer, Ms Downing said knowing that the condition could not be cured was devastating to sufferers of any age.

"People with Parkinson's often feel shut up, lonely and misunderstood," she said, adding that patient's mental capabilities did not change because of the disease.

"They are not stupid or drunk," she added.

But for many sufferers, everyday tasks become an almost-impossible chore. Some freeze when they are in the middle of crossing the road, others are unable to go shopping on their own.

"To wear a badge that says 'I am not drunk, I have Parkinson's' would be a good idea," said Hanne, a sufferer from Denmark, in the European association's publication.

Speaking at a conference to kick off Parkinson's Awareness Week last week, Ms Downing stressed the importance of having at least one nurse specialised in Parkinson's in Malta, as well as the availability of items which could make sufferer's lives easier, like equipment to help them button up their clothes.

Moreover, she later said, some medication that could be very beneficial for patients was still unavailable in Malta, something she described as "a disastrous problem".

European Parkinson's Disease Association president Stephen Pickard said access to medication remained a problem, especially in small countries where it may not be as profitable for pharmaceutical companies to make their products available.

Moreover, a good number of patients were being duped by cheaper drugs sold over the internet. He said a recent survey showed a staggering 62 per cent of these drugs were fake.

Although medication could pose a financial burden on societies, the loss of productivity amounted to almost half the cost of brain diseases, Mr Pickard said.

Mr Pickard, whose father was diagnosed with the disease at 58, said the first symptom of Parkinson's was normally shuffling of the feet, uneven swinging of the arms and shaking, although it was hard to generalise.

Catherine Gonzi, the Prime Minister's wife, was introduced as the patron of the local association, which was set up last year and is expected to request to join the European association in a few months' time.

Mrs Gonzi said that, for Parkinson's sufferers, talking to someone who understood their problems could be a lifeline.

As part of the awareness week, the local association set up information stands in hospitals to raise awareness and educate the public on the condition.

The activities will close with a fund-raising concert today at St Andrew's Scots Church in Valletta.

Factbox

The patient

Anne*, a 56-year-old from Madliena, was diagnosed with Parkinson's two years ago: "I regularly feel tired and if I have a busy week, the next week I have to rest".

She also suffers from aching limbs, where her muscles seize up and the right side of her body is weaker. It was a pain in her right hand, initially mistaken for arthritis, which led to her diagnosis.

Anne considers herself lucky. Medication has helped reduce her symptoms and even increased her artistic streak, pushing her to start creating jewellery: "Good comes out of these things as well".

The carer

For nine years, Ruth*, from Balzan, had been taking care of her husband, now wheelchair-bound.

"He started getting very weak and pale, with heavy legs. After six months he was diagnosed with Parkinson's," she said.

For the couple, this was a shock. They did not know anything about the condition, or the symptoms. Ruth, now 63, had to learn to drive, something she had never dreamt of beforehand, and the couple had to move to a ground-floor house.

"I don't know what lies ahead but I ask him to trust me because for as long as I have my health and can look after him, I will. He is not going to a home," she said.

* Names have been changed to protect the persons' identity.