A woman who can smell Parkinson’s disease has described the moment she realised her husband had it.
Joy Milne told Sky’s The UK Tonight With Sarah-Jane Mee about how her rare condition of hyperosmia, an incredibly sensitive sense of smell, helped her sniff out the disease in her late husband, Les.
She said: “Well, when you know, you’re saying to your husband ‘well you’re smelling, you’re not having enough showers and you’re not brushing your teeth enough’ and various other things, it doesn’t go down well to start off with does it?”
“We continued like that for a while, and then I thought I’ve got to stop this, he’s not terribly pleased, I’ll just have to keep quiet.”
Joy and Les Milne
But when Mr Milne was around 29 years old “there was a definite change, a very distinct change,” she said.
And by the time he was 31 “his smell had completely changed” and other things had “begun to happen”, leading her to think “maybe he had a brain tumour”.
A neurologist eventually diagnosed Mr Milne with Parkinson’s.
Joy and Les Milne
Ms Milne said she later went to a Parkinson’s meeting in Perth, Scotland, and noticed “by the time I left, I could tell you who had Parkinson’s, who did and who didn’t”.
“Now, there were over 30 people there. And, you know, I was quite able to do that.”
She described her ability to Dr Tilo Kunath from Edinburgh University, who worked with Perdita Barran, professor of mass spectrometry at the University of Manchester, to devise an experiment to test Ms Milne’s ability.
Joy Milne
Professor Barran told Sky News: “We had to do an experiment to separate the obvious movement symptoms of people with Parkinson’s disease from the smell.”
They had people wear T-shirts and then put the T-shirts in bags, which were given to Joy, who “was 100% correct in smelling the T-shirts and diagnosing from a T-shirt whether someone had Parkinson’s or not”.
Professor Barran said: “So that was the first incredible step change, because it actually meant we could diagnose someone from the material that they were wearing, from clothes.”
They now use gauze or Q-tips to collect samples and analyse them using a method called mass spectrometry, which “weighs molecules and helps us to find out what they are”.
Joy Milne at the mass spectrometer
The method allows Ms Milne to smell molecules while they are identified by the machine.
Professor Barran explained: “So we split them. Some go to be weighed and some go to Joy’s nose. And that allows us to code to find out which of the very complicated mixture of molecules we have on our skin from skin swabs, are to do with the disease, are the ones that smell of it.”
Asked how it feels to walk past someone who might smell like they’re carrying the condition and whether it’s difficult to carry on walking by, Ms Milne said: “It is very difficult, but I have signed a non-disclosure because it is unethical. It is and I can’t do anything about that.”
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Pressed on whether she finds it a blessing or extremely difficult, she said: “I think, because it’s a genetic thing in the female side of the family, my grandmother did warn me when she trained me, she did warn me not to use [it].
“She said I would find it very difficult unless I made the decision that I would go ahead and do it. And I have made that choice. I was a nurse, a carer for my mother-in-law and my husband with Parkinson’s and really it was the right choice. I think it was the right choice.”
