Page last updated at 11:34 GMT, Friday, 2 October 2009 12:34 UK

'They accused me of being drunk'

By Jane Elliott
Health reporter


James Downie: "People think I am drunk, not disable."

A stranger put her hands on James Downie's car and begged him not to drive.

She wrongly thought his slurred speech and unsteady gait were the result of excess alcohol.

"She said 'you can't drive in that condition'," said James.

"I showed her my disabled badge and said 'what? My disabled condition?' and she felt very bad about it."

James, 29, has a progressive neurological condition called ataxia.

Seeming drunk

Ataxia - which means 'lack of order' - can affect walking, speech, and co-ordination.

Many wrongly think that the person with the condition is simply drunk.

In terms of stopping the progression there is nothing
Dr Julie Greenfield

"I also had an argument with an airport guy who would not let me board a plane because he thought I was drunk," said James, who says he is annoyed and distressed by the wrong assumptions.

"He said 'you have been drinking haven't you!' I was in my wheelchair, but he wouldn't listen. Thankfully a colleague of his dealt with me.

"A lot of bars won't let me in either because they think I am drunk."

Ignored symptoms

James, from Surrey, first started noticing problems at the age of 15 when he started becoming more clumsy and found sport increasingly difficult.

He knew he had a problem, but ignored it until his symptoms progressed.

At the age of 21 James was diagnosed with Freidreich's ataxia - the most common of the ataxias (there are thought to be dozens).

"I locked myself away when I was first diagnosed," he said.

"I tried to ignore it and pretend it wasn't going to get any worse.

"If I did anything wrong I would go mad - if I dropped a plate I would punch the wall."

There is currently no cure for the condition, which affects over 10,000 people in the UK.

Dr Julie Greenfield
Dr Greenfield is working to try to find a cure

But despite the prevalence a recent study by the charity Ataxia UK showed that just 7% of the public know what it is.

The charity is attempting to raise the profile of the condition.

Consultant neurologist Dr Paola Giunti is a world authority on ataxias and established the first ataxia centre in the UK, based at University College London.

She said they are working to alleviate symptoms and find a cure.

"Currently there is no treatment for ataxias, and only a few clinicians have expertise in dealing with them," she said.

"Treatment is directed at helping patients cope with their symptoms and improving the quality of their lives.

"We are also very active in research. We have been recently identified a gene which is responsible for one type of ataxia called spinocerebellar ataxia 11.

"We are also involved in a European trial for a drug for the most common genetic ataxia, Friedreich's Ataxia."

No cure

Dr Julie Greenfield, from Ataxia UK, said it was important not to underestimate how a severe case of ataxia could affect the person with it.

A recent study of 215 people with ataxia by Ataxia UK found that just under half (46%) of those questioned they felt isolated by the disease.

More than one in three (34%) was currently living in a home that is no-longer suitable for them.

The research also found that over three in five (65%) people with the condition were concerned about the future and one in five (19%) were facing financial difficulties because of their condition.

The first symptoms are usually clumsiness and unsteady gait. This can progress to an inability to walk
Ataxia can also affect vision, hearing and speech
The condition can be mild or severe

Dr Greenfield said the unpredictability of the condition is particularly distressing.

"Some cases are really severe and some aren't," she said.

"Because these conditions are progressive you know you are getting worse over time - and it is something you have no control over.

"There is quite a lot going on, but at the moment people will have physio and medication for the symptoms such as tremor and muscle spasm.

"In terms of stopping the progression there is nothing."

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