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Edinburgh Live
Edinburgh Live
National
Ella Pickover & Sian Traynor

Scottish wife realised husband had Parkinson's disease after his 'smell changed'

A Scottish woman has shared how she was able to tell something was wrong with her husband after his 'scent changed.'

Joy Milne, 72, has now worked with scientists after being dubbed as the 'woman who can smell Parkinson's' after she managed to detect something was different with her husband, Les.

Diagnosed with a rare condition that enables a heightened sense of smell, Joy has now used her skills to work with researchers on a test for the disease.

READ MORE - Terminal Edinburgh mum facing painful cancer death plans to end life in Australia

Explaining her discovery, Joy shared that she knew something wasn't right with Les when he was just 33 years-old, after his normal scent became "musky."

Twelve years later, Les was diagnosed with the disease, which leads to parts of the brain become progressively damaged over many years.

Joy, from Perth, said that she can sometimes smell people who have Parkinson’s while in the supermarket or walking down the street - but has been told by medical ethicists that she cannot tell them.

Her impressive observations have now seen her working with scientists around the world to see if she can smell other diseases like cancer and tuberculosis (TB).

Mrs Milne said: “Which GP would accept a man or a woman walking in saying ‘the woman who smells Parkinson’s has told me I have it’? Maybe in the future but not now.

Les has now passed away (PA Media)

“I have to go shopping very early or very late because of people’s perfumes and I can’t go into the chemical aisle in the supermarket.

“So yes, the condition is a curse sometimes but I have also been out to Tanzania and have done research on TB and research on cancer in the US – just preliminary work. So it is a curse and a benefit.”

Joy said her husband, a former doctor, was “determined” to find the right researcher to examine the link between odour and Parkinson’s so in 2012, they sought out Dr Tilo Kunath at the University of Edinburgh who paired up with Professor Perdita Barran to examine her skill.

The scientists believed that the scent may be caused by a chemical change in skin oil, known as sebum, that is triggered by the disease. In their preliminary work, they asked Joy to smell t-shirts worn by people who have Parkinson’s and those who did not.

The pensioner correctly identified the t-shirts worn by Parkinson’s patients but also said that one from the group of people without Parkinson’s smelled like the disease.

Eight months later, the individual who wore the t-shirt was diagnosed with Parkinson’s.

In 2019, after hoping that the finding could lead to a test being developed to detect Parkinson's, researchers at the University of Manchester, led by Prof Barran, announced that they had identified molecules linked to the disease found in skin swabs.

Using this information, scientists have now developed a test, which have already been successfully conducted in research labs and scientists are now assessing whether it can be used in hospital settings.

If successful, the test could potentially be used in the NHS so GPs can refer patients for Parkinson’s tests.

Prof Barran said: “At the moment, there are no cures for Parkinson’s, but a confirmatory diagnostic would allow them to get the right treatment and get the drugs that will help to alleviate their symptoms.

“There would also be non-pharmaceutical interventions, including movement and also nutritional classes, which can really help.

"And I think most critically, it will allow them to have a confirmed diagnosis to actually know what’s wrong with them.”

Joy added: "I think it [Parkinson's] has to be detected far earlier – the same as cancer and diabetes. Earlier diagnosis means far more efficient treatment and a better lifestyle for people.

“It has been found that exercise and change of diet can make a phenomenal difference.”

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