‘When the doctor told me it was like time stood still’
Claudia Calleja takes a glimpse into what it’s like to live with Parkinson’s disease.
Paul Wallace was sitting at his computer when the curser started repeatedly blinking on the screen and, when he looked at the mouse, he saw his thumb move uncontrollably.
He did not think much of it and when his shoulder started aching he thought it was a trapped nerve.
Later that year, 2008, he was sipping coffee when his right hand started shaking. He decided to have it checked and his doctor referred him to a neurologist.
“He told me I had the initial stages of Parkinson’s disease. It was a shock. It was like time stood still. I left, sat in my car in the car park and said: ‘My God’,” Mr Wallace recounted.
He then went to a friend’s house and broke down.
A part of him was relieved he could now explain the depression he had fallen into some time earlier.
After his diagnosis, he tried to lead as normal a life as possible with the help of medication, going to work and exercising to keep fit and active. But, as time passed, his condition got worse.
His walking became tired and heavy. “Everything is a struggle. You slow down, lose your self confidence. You use twice as much energy as an able-bodied person. If I pick up a mug, it’s twice as heavy. A day feels like two days,” the 62-year-old said.
“I’m on 37 tablets a day at the moment, including morphine… But you have to keep doing things and can’t just sit and worry,” he said.
Mr Wallace, a former English lecturer, retired three years ago and moved to Malta in January 2011. He had been here several times before because his mother was Maltese and he has family on the island.
Living in Malta made him realise that people here seem to be “afraid of the stigma attached to non-perfection”.
“There aren’t many other people with crutches… I worry that they’re hidden away somewhere. I think they’re ashamed that they’re not perfect,” he said.
Mr Wallace tries to make sure he does not cut himself off and goes out on “good days”.
“Getting ready in the morning takes two hours. I have to take a tablet before I get out of bed. Then I take a load of drugs, brush my teeth and shave while sitting down. I have a shower, sit down, get dressed and, very often, after I come in here (the living room) after two and a half hours of doing this mundane every day thing, I fall asleep.
“You’re in a lot of pain most of the time because of the rigidity in the joints. It’s like wearing what the knights wore in the 14th century. It feels like everything is heavy.”
He has had to adjust his life by using strategies. He keeps a chair just behind the front door because he knows he will be exhausted on returning home.
Parkinson’s disease is a progressive neurological condition that occurs when a large percentage of the substance called dopamine, contained in cells in the part of the brain, is lost. This chemical is responsible to control movements and, therefore, a reduction of this chemical will cause problems in movement, the president of the Malta Parkinson’s Disease Association, Veronica Clark, said.
The main symptoms of Parkinson’s are rigidity, slowness of movement and tremor. As well as affecting movement, people with Parkinson’s can find that other issues, such as tiredness, pain and depression, can have an impact on their day-to-day lives. Many of the symptoms can be controlled over the years by using a combination of drugs, therapies and, occasionally, surgery.