Parkinson's disease does not mean no life or no hope

Published on Monday 30 June 2008 20:46

Being diagnosed at the age of 36 with a disease that usually affects older people was a devastating blow, Bryn Williams tells Claire Smith

IT WAS in November 2006 that Bryn Williams, a patents attorney from Glasgow went to his doctor complaining of a tremor in his right hand. Williams was in his mid-30s and fit and healthy. Eventually, after seeing a series of doctors Williams was given a diagnosis – he was among the minority of Parkinson's sufferers to be diagnosed before the age of 40.

"I absolutely flipped," recalls Williams, who is now 37 and has been living with the disease for almost a year.

With a demanding job and a young family Williams was terrified of what the future might hold. "I lost it completely," he admits.

The attorney began to look up everything he could find about Parkinson's on the internet. To begin with, this made matters worse.

According to the Parkinson's Disease Society there are about 120,000 people living with the disease in the UK. Most are elderly, but around one in 20 develop Parkinson's before the age of 40.

The disease, first identified by 18th century London doctor James Parkinson, is caused by a loss of the cells in the brain that produce dopamine.

The symptoms of Parkinson's only become evident when 80 per cent of the dopamine in the brain has been lost. Once the disease has developed it progresses gradually and can lead to tremors, slowness of movement and stiffness.

The disease is not fatal – but there is no known cure, and treatments are imperfect. The drug Levodopa, which mimics the action of dopamine, can be effective at first but becomes less so over time. Another treatment – dopamine agonists – can be effective but has been linked to compulsive behaviour such as gambling addiction.

"Three weeks after the diagnosis I was at my worst. I seriously thought I was going to be in a wheelchair at Christmas," he says.

Like many who are facing a serious illness in what should be the prime of their lives Williams wanted to do something about it.

"I started trawling the internet to find out everything I could about the disease and I found out there was a lot of good news about Parkinson's out there."

Ten days after his diagnosis Williams began writing a blog. His website – www.wobblywilliams.com – includes his online diary and links to resources about Parkinson's under the Mister Men character Mr Jelly, an image he was given special permission to use.

"I chose the Mr Jelly logo because it is easier to laugh about it than to sit in a corner curling up and feeling miserable. And I don't want people to approach the website with trepidation. I want it to be a source of optimism. The front page is full of good new stories about Parkinson's and the latest research. I write a blog and update the contributions from the fundraising campaign" he explains.

One of the most promising areas of research concerns the use of stem cells – which have the potential to help regrow damaged dopamine-producing cells in the brain.

In the US, Back to the Future actor Michael J Fox has been a major force in increasing awareness of the disease and campaigning for new research.

Fox was diagnosed with early onset Parkinson's in 1990, but it was not until 1998 that he decided to go public, and to set up the Michael J Fox Foundation.

The former actor has become a major campaigner in the US for increased funding for stem cell research. He has supported politicians who support this branch of research, allowing himself to be filmed when his physical and verbal tremors are at their worst. Williams says Fox has been hugely important in raising awareness of Parkinson's – particularly in younger people.

"His impact has been tremendous. I was in America recently and I saw advertisements everywhere saying: 'Run a Marathon for Team Fox'."

You can sense Williams' frustration that there is not a similarly high-profile campaign for Parkinson's in the UK. But in his own way he is trying to raise the disease's profile and to help sufferers find information that can help them.

Williams has also found that exercise has helped him cope with his own diagnosis. "I have never been an exerciser but now I do Pilates, running and I go to the gym. It makes a big difference – it helps me feel positive and I'm much more flexible than I was before."

Williams has just completed a ten kilometre run and plans to take part in the Great Scottish Run later this year.

After telling his friends and colleagues about his diagnosis he was inundated with offers of support and now has 100 people signed up to walk the West Highland Way in September for the first Wobbly Williams Walk to raise money for the Parkinson's Disease Society.

Almost a year after his diagnosis Williams is in a much better place.

"Before I was diagnosed I had lots of small worries. I worried about career, money, children, things like that. Now they are replaced by one big worry – but as a person I'm happier. I'm much less stressed."

He has been relieved to discover that his employers will support him to work as long as possible.

"The company has been great and as long as I can still read or dictate they will find a way for me to work," he says.

Next year, Williams plans to take his fundraising efforts to a new level and start talking to corporate bodies about how they can help.

"The best way to make life easier for somebody with Parkinson's disease would be to find a cure," he states.

In the meantime, Williams hopes his activities will help raise awareness. And he hopes he can show by example that for a younger person diagnosed with Parkinson's there is still life and there is still hope.

"If the doctor had told me a year after my diagnosis I would be running in the Great Scottish Run it would have made me a much happier and a more relaxed man."

&#149 www.wobblywilliams.com