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Meet the woman who can smell Parkinson's
Sunday March 05, 2017
Joy Milne’s ability to pick up the scent of illness early could lead to a breakthrough in disease testing, finds Joan McFadden.
When Les Milne was diagnosed with Parkinson’s disease age only 45, his wife, Joy, was devastated. But her sadness wasn’t just down to the fact her husband was in the grip of such a terrible illness — it was also because she’d registered a change in his smell 12 years earlier, but hadn’t realised it was linked to the disease.
Upon first noticing a “sort of woody, musky odour,” Joy “started suggesting tactfully to him he wasn’t showering enough or cleaning his teeth,” she recalls. “He clearly couldn’t smell it and was 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 that left me dreading what might come next.”
When Les was eventually referred for a brain scan, he was told his symptoms indicated a diagnosis of either a brain tumour or Parkinson’s, which affects one in 500 people in Britain. As medical professionals — Les worked as an anaesthetist — both knew how serious the diagnosis was, though Joy admits it was a relief to have one at all.
It wasn’t until she 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 up again. During a session chaired by Dr. Tilo Kunath, the charity’s senior research fellow, Joy asked why people with Parkinson’s smelled different.
“Parkinson’s sufferers often lose their sense of smell, so I thought that’s what she was referring to, 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 realized a question so specific might indicate a unique gift. “I tracked her down and we did a test where she smelled 12 T-shirts — six worn by people with Parkinson’s and six without,” he explains. “She identified seven T-shirts as being from Parkinson’s sufferers and we thought: ‘Eleven 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 he had been diagnosed with the condition.
Though Joy doesn’t claim to be able to smell Parkinson’s with total accuracy, news she had done so on the clinical test proved the extent of her skill, which she first noticed at 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.”
Her colleague’s reaction was such she didn’t mention the notion again until she started going to a Parkinson’s support group with Les, where she realized the other sufferers had the same musky odour as him.
The smell of Parkinson’s sufferers is always the same, Joy explains, but to different degrees depending on factors such as how long they’ve had the condition and whether their medication is effective. It may sound like a curse, but she doesn’t find herself plagued by potentially life-threatening scents while walking down the street — the perfect conditions for her to recognize an affliction are to smell a garment that has been worn for 24 hours without deodorant or perfume; ideally a white item, as “colours have scents.”
Many medical practitioners are aware of a particular odour associated with some cancers and conditions such as diabetes, which can make the sufferer’s breath smell like nail varnish remover, but it is usually anecdotal, rather than driving medical research.
Scientists now believe changes in the skin of people with Parkinson’s produces an 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 and then develop a simple test, such as wiping a person’s forehead with a swab — research Professor 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 inpatient admission for the disease has been estimated at pounds 194 million a year, 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 that 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 had known the real reason why Les’s smell changed far earlier than his diagnosis, she is hopeful working alongside medical professionals will yield important results. A few people with highly specialized 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 realized 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 ongoing 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.
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