'I don't want to be hidden away'

By Jane Elliott Health reporter, BBC News

And, although the majority of people with the progressive neurological condition are 60 and over, young people can and do get it.

Jacqueline Narnor was just 36 when she was diagnosed nine years ago, and doctors suspect that she could have had Parkinson's Disease since she was 18.

Like a number of fellow young-onset patients, Jacqueline, a quilter from Newbury, Berkshire, feels few understand what she is going through.

Vital support

She is stared at when she goes out on her mobility scooter, people avoid looking her in the face when talking to her and seem embarrassed by her condition.

Jacqueline tries to treat it all with humour and is determined to be as in the public eye as possible - to get the dilemma of young-onset Parkinson's patients noticed and talked about.

Because of our age we don't want to be hidden away from the world Jacqueline Narnor

"I thought Parkinson's was something that came with old age," said Jacqueline.

"There are more younger people getting diagnosed and all over the country there are starting to be support groups for us.

"Myself and a friend have started a support group in west Berkshire. We are trying to be more visible. Because of our age we don't want to be hidden away from the world."

Jacqueline said it was a while before doctors diagnosed her.

Parkinson's Disease facts 10,000 people are diagnosed with Parkinson's in the UK every year One in 20 is under the age of 40

"I kept going to the doctor saying I had this wrong and that wrong and kept being sent back home.

"I think they just thought I was a hypochondriac, but I had real tiredness, low energy levels.

"I never even noticed my tremor, but a few years later I could hardly walk so my doctor sent me to a neurologist and they diagnosed me with young-onset Parkinson's," she said.

"I live with my condition 24/7, it is always on my mind. It took me about two years to get over the shock of the diagnosis."

Eye contact

After years of walking with a stick Jacqueline has just started to use a mobility scooter and says she is just getting used to that.

"Generally when you go out on your mobility scooter people look at you and they avoid your face."

Her way of coping is to engage people in conversation, telling them it is a 'recycled Ferrari' and putting people at their ease.

"With Parkinson's you get very bland facial expressions, but I make sure I smile all the time and that makes a big difference."

The yellow area shows part of the brain involved in Parkinson's disease

But she said some friends are too debilitated by their condition to consider going out and this is why support groups - particularly on the web - are such vital tools.

"The thing that saddens me about young-onset is that there are so many people who do not go outside the door because they are embarrassed," she said.

"We are trying to get through to them by setting up an internet chat room so that they have someone to talk to."

Dr Paul Worth, consultant neurologist at Norfolk and Norwich University Hospital, said that the young-onset patients did face different challenges and that the effects of a diagnosis at a young age is different from those in the elderly patient.

"These young people will likely have to live with the condition longer," he said.

"But, although it has long been held that Parkinson's does not decrease life expectancy significantly, the figures are of course based on the majority of patients who are in their 60s.

"In fact recent evidence suggests that life expectancy is significantly decreased in patients aged under 50 at onset. Also, patients who are diagnosed at a young age are more likely to get complications from the treatments than their elderly counterparts.

"When they start on treatment most patients with Parkinson's respond well, but within a few years of treatment many patients develop complications of drug treatment.

"These include the tendency of the effect of the drug to wear off before the next dose, and the development of involuntary movements.

"These complications probably occur sooner in young-onset Parkinson's patients, possibly as a result of the more rapid loss of the patients own brain cells."

Steve Ford, chief executive of the Parkinson's Disease Society, said the younger patient needed often needed specially-tailored help.

"When younger people are told they have a progressive and currently incurable condition they will inevitably face different challenges to older people, including worries about supporting a family, continuing to work and maintaining an active lifestyle."

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