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Woman who smelled her husband’s Parkinson’s helps scientists come up with diagnostic test

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A woman who noticed her husband smelled different, before he was diagnosed with Parkinson’s, has helped scientists develop a test that spots the disease.

Joy Milne, 72, said her late husband, Les, “developed the smell when he was just coming up for 32”.

She told Sky News: “I kept saying to him, you’re not showering properly. And he became quite angry about it at first.”

Mrs Milne said the odour would come and go, and decided they would have to live with it.

But the musky aroma became “stronger and various other things happened”, she explained.

“He was a bit more tired, grumpy, and I thought he had a brain tumour.”

Eventually, when he was 44, Mr Milne was diagnosed with Parkinson’s.

Mrs Milne said she already knew – prior to detecting her husband’s disease – that she was able to smell things that other people could not.

“My grandmother had it,” she said. “It’s hereditary. My two sisters have it as well.”

After working as a nurse, with “pewter mugs” and “metal bedpans that we had to wash”, Mrs Milne said she developed an “olfactory library”.

Undated handout photo of Joy Milne, Scientists have harnessed the power of her hyper-sensitive sense of smell to develop a test to determine whether people have Parkinson’s disease. Issue date: Wednesday September 7, 2022.
Image:
Joy and Les Milne

Test uses cotton bud

Once her husband’s diagnosis was confirmed, Mrs Milne mentioned the change in smell to Dr Tilo Kunath from Edinburgh University.

That started a process which has now resulted in a swab test developed by academics at the University of Manchester.

People with Parkinson’s are identified using a simple cotton bud run along the back of the neck.

Mrs Milne hopes the disease will now be identified sooner. At present, it is “diagnosed with over 50% of neuronal damage”, she explained.

“I am very much hoping that an early diagnosis can prevent it getting to the neuronal damage. It will be diagnosed when the constipation and loss of smell (and so on) are there and prevent the disease progressing any further.”

Speaking earlier, Mrs Milne said it was “not acceptable” that people with Parkinson’s had such high degrees of neurological damage at the time of diagnosis.

“I think it has to be detected far earlier – the same as cancer and diabetes,” she said. “Earlier diagnosis means far more efficient treatment and a better lifestyle for people.”

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

Sniffing T-shirts

Mrs Milne said her husband, a former doctor, was “determined” to find the right researcher to examine the link between odour and Parkinson’s, and they sought out Dr Kunath, who paired up with Professor Perdita Barran to examine Mrs Milne’s sense of smell.

The scientists believed the ‘scent of Parkinson’s’ may have been caused by a chemical change in skin oil, known as sebum, that is triggered by the disease.

In their preliminary work, they asked Mrs Milne to smell t-shirts worn by people who had Parkinson’s and those who did not.

Mrs Milne correctly identified the T-shirts worn by Parkinson’s patients, but she also said one from the group of people without Parkinson’s smelled like the disease.

Eight months later, the individual who wore that T-shirt was diagnosed with it.

Researchers can examine the test sample to identify molecules linked to the disease.

Sir Billy Connolly pictured in 2019
Image:
Sir Billy Connolly lives with Parkinson’s disease

Possible NHS rollout

While still in the early phases of research, scientists are excited about the prospect of the NHS being able to deploy the simple measure.

The tests have been successfully conducted in research labs, and assessments are being made as to whether they can be used in hospital settings.

If successful, the test could potentially be used in the NHS, enabling GPs to refer patients for further tests.

The findings, which have been published in the Journal of the American Chemical Society, detail how sebum can be analysed with mass spectrometry – a method which weighs molecules.

Researchers compared swabs from 79 people with Parkinson’s with a heathy control group of 71 people.

The degenerative disease is the fastest growing neurological condition in the world. It has a variety of symptoms including tremors – particularly in the hands – gait and balance problems, slowness and extreme stiffness in the arms and legs.

Read more:
Frequent nightmares could be an early warning sign of Parkinson’s disease
Scientists take ‘vital step’ towards finding a cure for Parkinson’s

Prof Barran, from Manchester University, said there was currently no cure for it, but a confirmatory diagnostic would allow patients to get the right treatment and drugs more quickly.

She said exercise and nutritional changes would also be advised, but “most critically, it will allow them to have a confirmed diagnosis to actually know what’s wrong with them”.

She added: “At the moment in Greater Manchester there are about 18,000 people waiting for a neurological consult and just to clear that list, without any new people joining it, will take up to two years.

“Of those, 10-15% are suspect Parkinson’s. Our test would be able to tell them whether they did or whether they didn’t (have Parkinson’s) and allow them to be referred to the right specialist.

“So, at the moment, we’re talking about being able to refer people in a timely manner to the right specialism, and that will be transformative.”

More than 10 million people worldwide live with Parkinson’s disease, including musician Ozzy Osbourne, comedian Sir Billy Connolly and actor Michael J. Fox, who was diagnosed aged 29.

Diagnosis is generally based on a patient’s symptoms and medical history.

Can she smell other diseases?

Mrs Milne is now working with scientists around the world to see if she can smell other diseases like cancer and tuberculosis (TB).

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

She said 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 she cannot tell them.

“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.”

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