'Jacob helps me stand up to disease'

Most fathers feel a slight trepidation as they initially pick up their first-born, as if they might break them by some clumsy slip of the hand.

But Joel had more reason than most to feel a little nervous.

Just months earlier, in the same week he discovered he was going to be a dad, doctors delivered a sledgehammer blow by telling him he had Parkinson's disease.

Over the previous two years, the 45-year-old actor, director and choreographer had been plagued by fears that he was losing his co-ordination in his right hand and leg. For someone used to having complete control over his body, it was more than a nagging concern.

His doctor agreed something was not right and sent him for hospital tests. Then, just days after his wife Miriam told him she was pregnant, he kept an appointment with a neurologist where he was given the crushing diagnosis.

Joel's mind had been a blur. He knew little about the disease, which, like many, he had thought only affected older people. His mind was suddenly filled with questions – would he still be able to work, and would he be capable of caring for his baby?

"My first concern was for my family. I was worried about my wife and how she would take it. We'd only just found out we were pregnant," he recalls.

"For the first few months I think I was in denial. My main priority was trying to keep Miriam occupied and keep her mind off it."

Surprisingly, the birth of Jacob helped them both come to terms with the disease. At first Joel had worried he would not be able to cope with the demands of a baby. Trying to change a nappy and hold a wriggling baby seemed impossible. But he found caring for him forced him to be more patient, and to live in the present.

Three-and-a-half years on, father and son love playing together – and they work as an extraordinary team, the one helping the other with things they cannot easily do.

Jacob has now learned to dress himself, and likes to help his father zip up his jacket and thread his belt through its loops. Then he enjoys riding on his shoulders to play group.

Joel, who is now 49, says: "I still carry him in my arms, and when I'm holding him, I'm a lot more cautious. It's interesting that I walk a lot straighter when he's on my shoulders.

"I do think about Parkinson's every day, but playing with my son helps me forget. It's a degenerative disease, but I'm glad I was more agile when he needed me to be."

Of course, the disease has affected Joel's work. He describes it as "creeping up on you", and gradually taking away some of the movement he took for granted. He can no longer write with his right hand, and walks with a slight limp. Other symptoms include a loss of strength and muscle co-ordination, and a difficulty in forming facial expressions.

As a dancer, he found the lack of control difficult to accept at first. But he has now thrown himself into writing and directing.

This month sees the Scottish premiere of his production East of the Sun, West of the Moon at the Roxy Art House. It combines actors with puppets to create a retelling of a traditional Norwegian folk tale. Told with humour and insight, it is a compelling coming-of-age story to appeal to both children and adults.

He says: "I still want the same things from a show as I have always wanted. It's harder for me to get up and demonstrate so I rely on better communication but as a director I'm pretty much the same as I ever was.

"Maybe I'm more compassionate towards my characters than before – Parkinson's has a way of making you more compassionate.

"The cast has been very supportive. One interesting thing is that it makes a lot of facial expressions difficult and I look more serious than I am. I have to keep telling them I'm enjoying it!"

Born in South Carolina, Joel joined the US Navy before training as an actor and dancer. His interest in fencing developed into choreographing fight scenes for the stage.

His work with theatre companies soon won him critical acclaim, and gave him the chance to travel around the world. He met Miriam, a secretary and accomplished tango dancer, while performing at the Edinburgh Fringe seven years ago. The couple fell in love, and a year later, he moved to the Capital to be with her. They now live in Dalgety Bay, in Fife.

He says his varied career means he has few regrets. Curiously enough, he still enjoys tango dancing, saying the emphasis on tempo and posture helps his condition.

"I've had a 20-year career and I've done everything I've wanted to do. There's a saying that it's better to live a year as a lion, than a thousand years as a lamb. I feel I've lived 20 years as a lion!

"My wife has been very supportive. And my family are very stoic, and they are good at dealing with problems!"

He admits he was reluctant to join any support group at first, and only went along to an event about Parkinson's disease because he wanted to visit Dundee. But he found himself going to lectures, and discovered that it was a relief to hear other people's stories.

He has now helped set up a group in Edinburgh for younger sufferers of the disease. This now includes around 26 people, aged between 48 and 65. As well as sharing experiences, they also enjoy a range of social activities.

He says: "I was very nervous about telling people at first, but I wish I hadn't been. There needs to be more awareness, and it's far more difficult for young people.

"There are a lot of misconceptions about Parkinson's. People think everyone with the disease shakes, but not everyone has a tremor. It affects everyone differently.

"One of my biggest concerns is people who think I've been drinking. I'd hate to think people were thinking: 'Look at that drunken man with his son'. If I could teach people anything, it would be teach them not to make assumptions. It's been an adjustment to make myself not care about them."

He says staying active and sociable helps, as does absorbing himself in his family and work. Looking after his son has taught him to stop worrying about small frustrations, and live one day at a time.

He says: "One of the most important natural medical treatments is to be happy, as it releases adrenaline and serotonin. I think my default position is to be very positive, and I don't worry too much about the future."

East of the Sun, West of the Moon is at the Roxy Art House, Roxburgh Place, on Friday 19 and Saturday 20 March.

THE FACTS

PARKINSON'S disease is a neurological condition that exists when the brain does not produce enough of a chemical called dopamine. Well-known sufferers include Margo MacDonald MSP, below left, Michael J Fox, and Muhammad Ali.

It affects people differently, but symptoms include fatigue, loss of strength, loss of co-ordination, slow movements, stiff joints and tremors. Some people also have difficulty with speech.

The risk of developing Parkinson's increases with age, and symptoms often appear after the age of 50. But one in 20 people diagnosed is under the age of 40. Symptoms develop gradually, and it can be months or years before they become obvious enough for a person to consult a doctor.

At present there is no cure, but there a number of medications available to treat it. Many people also find physiotherapy, a healthy lifestyle and relaxation can help. The disease is not fatal.