When IS the right time to tell your children you have a life-changing disease? Sarah has Parkinson’s, which causes terrible tremors and intense fatigue, but she keeps a smile on her face for her two boys

The morning rush to get the children ready for school can be stressful for any parent.

But for Sarah Webb, 46, from Kingston upon Thames, South-West London, it’s fastening buttons for her sons Jasper, nine, and Connor, seven, that’s a worry — it’s not just fiddly, but also often impossible.

Though she tries hard to keep a smile on her face for her boys, this daily struggle is a painful reminder of the relentless march of the progressive illness Sarah lives with.

It’s six years since a neurologist broke the news to Sarah and her husband Tim, 49, a banker, that she had Parkinson’s disease.

She was just 40, and her youngest son was a few months old.

‘I was plunged into utter shock. I couldn’t believe it was happening to me,’ she says.

The former sports PR joined the 127,000 people in Britain with the neurological condition that can leave those affected struggling to walk, talk, sleep and do everyday activities.

‘Though the majority of people are diagnosed after the age of 65, it is not exclusively an older person’s condition,’ says Professor David Burn, an honorary consultant neurologist at the Newcastle upon Tyne Hospitals Trust and clinical director at the charity Parkinson’s UK.

In fact, it is estimated that more than 17,000 people with Parkinson’s are aged between 20 and 64.

One in seven people is diagnosed before the age of 50 and one in 20 before 40.

Parkinson’s is caused by a loss of nerve cells in a part of the brain called the substantia nigra.

These nerve cells produce the chemical dopamine, which helps control movement.

The disease may progress more slowly in younger patients, says Professor Burn.

However, getting a diagnosis can be a problem as GPs are less likely to suspect they have Parkinson’s.

It is a difficult condition to identify — specialists usually piece together a diagnosis largely based on patients’ symptoms, a process that can take years. Key symptoms include tremor, rigidity and slow movements.

In Sarah’s case, she visited her GP when Connor was five months old because of extreme tiredness and an uncontrollable tremor in her left arm.

‘I couldn’t feed him without my arm trembling. And at night it got even worse.’

She was referred to a neurologist for tests and brain scans. When she went back for the results three months later, she thought he’d say she was just exhausted from looking after a newborn and a toddler.

‘Instead, the neurologist turned to me and said: ‘You’re tired because you have dopamine missing in your brain.’

That didn’t mean anything to me. And then he said: ‘You’ve got Parkinson’s.’

‘I broke down and Tim and I spent the next few hours in a side room comforting each other.’

Twenty years before her diagnosis, Sarah had taken up a tennis scholarship at a university in Georgia in the U.S., and hoped to play sport all her life.

Facing a future where she’d struggle to lift a racquet, she says it took two years to come to terms with the diagnosis and get her head around the implications for her family.

For younger patients — often with young children, busy careers and surrounded by healthy peers — a Parkinson’s diagnosis comes with its own particular set of issues.

‘Younger people’s concerns tend to be more about work, finance and managing family life,’ says Barbara Williams, a director of support and local groups at Parkinson’s UK.

‘They often feel that Parkinson’s takes away control.’

Many fear they will be shunned or pitied — indeed, research shows four in ten patients have hidden their symptoms or lied about having the illness, not wanting to be treated differently.

Sarah understands this all too well. For two years she revealed her diagnosis only to close family and friends.

‘I wanted to be able to live as Sarah without Parkinson’s for as long as I could.’

On the school run, she’d conceal her trembling hand in her pocket or behind her back, and she cut herself off from people who might ask well-meaning questions.

‘I was embarrassed and self-conscious, and didn’t want to burst into tears, which I was always close to.’

But as the condition progressed, hiding it became more stressful than having the illness.

Two years after diagnosis, she was persuaded to make a video for Parkinson’s UK YouTube channel about living with the illness.

Though she has come to terms with the bombshell, her young sons still don’t know.

‘I was doing some drawing with my son and he mirrored my tremor. I asked him what he was doing and he replied: ‘Drawing like you, Mummy.’

‘It was hard to know what to say to that. It’s not that I’m hiding it from them — I can’t hide the symptoms any more and I take my medication in front of them — but I want them to be old enough to understand. … read more here