When Les Milne was diagnosed with Parkinson’s disease aged just 45, his wife Joy was, understandably, devastated. But her sadness wasn’t just down to the fact her husband was in the grip of such a terrible illness but that, when she’d noticed a change in his smell 12 years earlier, she hadn’t realised the two things might be connected.
Upon first noticing a “sort of woody, musky odour” Joy “started suggesting tactfully to him that he wasn’t showering enough or cleaning his teeth,” she recalls. “He clearly didn’t smell it and was quite adamant that he was washing properly.”
Joy, a former nurse, let the issue lie, occupied with the far more pressing issue of her husband’s rapidly changing character. “He wasn’t the man I’d known since I was 16. About eight years before he was diagnosed he started suffering from mood swings, with bursts of anger which left me dreading what might come next.”
When Les was eventually referred for a brain scan, he was told that his symptoms indicated a diagnosis of either a brain tumour or Parkinson’s, which affects one in 500 people in the UK. As medical professionals – Les worked as an anaesthetist – both knew just how serious the diagnosis was, though Joy admits that it was a relief to have one at all.
Forced to retire five years later, the pair moved back to Perth from Cheshire, with his growing inability to sleep and diminishing motor skills seeing Les, a former water polo player for Scotland, give up the swimming he loved to do every day. “He was just a completely different person. It was devastating to watch” Joy, now 67, says.
It wasn’t until Joy attended a Parkinson’s UK awareness lecture in 2012, 17 years after her husband’s diagnosis, that the notion of the disease having a particular scent cropped back up. During the session by Dr Tilo Kunath, the charity’s Senior Research Fellow, Joy asked why people with Parkinson’s smell different. “Parkinson’s sufferers often lose their sense of smell so I thought that’s what she was referencing initially,” he remembers. “She clarified that she was asking about a unique body odour, which took me by complete surprise.”
It was only months later when Dr Kunath mentioned Joy’s observation to a colleague that he realised a question so specific may belie a unique gift. “I tracked her down and we did a test where she smelled 12 T-shirts – six having been worn by Parkinson’s sufferers and six without,” he explains. “She identified seven of the T-shirts as being from Parkinson’s sufferers and we thought ‘11 right out of 12 – not bad.’”
Eight months later the seventh person, who had been a ‘healthy’ control subject at the time, came to Dr Kunath’s team saying they had been diagnosed with the condition.
Though Joy doesn’t claim to be able to smell Parkinson’s with total accuracy, news that she had done so on the clinical test proved the extent of her skill, which she first noticed around the age of 21. “I remember when I was a student nurse, I mentioned to a ward sister about the smell of illness, referring to liver cancer” she says. “She was clearly completely baffled.”
Scientists now believe that changes in the skin of people with Parkinson’s produces a particular odour linked to the condition, long before developing the usual symptoms such as tremors and changes in speech. They hope to find the molecular signature responsible for the odour and then develop a simple test such as wiping a person’s forehead with a swab, research which Prof Perdita Barran is leading at Manchester University.
“Parkinson’s exacts a huge societal cost as well as being devastating to the patient and their family,” she says – the NHS spend on in-patient admission for the disease has been estimated at £194m per annum, though this does not account for the costs of medication, carers or treatment in care homes.
“As yet there is no cure for Parkinson’s, though preventative medicines are currently being developed. The earlier Parkinson’s is diagnosed the more we can do, as typically too many neurons in the brain are lost – irretrievably – by the time of diagnosis. If we can determine what it is Joy is smelling then we could find a completely different way of treating the disease and change a currently devastating prognosis.”
Les passed away in 2015 after a 20 year battle with the disease. The rest of Joy’s friends and family – they had three sons, now all in their 30s – have been less than forthcoming in asking her to give them the smell test. “No-one asks me – they go the opposite way and say don’t sniff me!”
Though Joy wishes she would have known the real reason why Les’s smell changed far earlier than his diagnosis, she is hopeful that working alongside medical professionals will yield important results. A few people with highly specialised senses of smell have been identified in the United States, though none with Joy’s ability to smell multiple conditions, so she could hold the key to a major breakthrough.
Since news of her skill was picked up by the media two years ago, Dr Kunath has been contacted by 12 people he believes may be able to detect Parkinson’s by its odour, though “this is all from correspondence, not from direct testing.”
Just before Les died he realised he had not, as a doctor, given a full account of what this disease had done to him and others. With Joy’s help he started to write a diary of what had actually happened to them, desperate to tell people of the devastating effects this disease has and the importance of early diagnosis.
Both Dr Kunath and Joy are determined to change this suffering for others. “Early detection will be vitally important in the near future,” he explains. “There are massive global efforts on-going to identify therapies to stop the progression of Parkinson’s, but their real impact will be experienced when they are given to people in the earliest stages of the condition before they are diagnosed. They could prevent the classic early motor symptoms from manifesting so the person never becomes a ‘Parkinson’s Disease’ patient”. Now, with Joy’s skills at hand, there is hope.