The wife who diagnosed her husband’s Parkinson’s by smell is using her gift to help doctors find a cure
Joy detected the disease in her husband about 20 years before he was diagnosed with the disease medically
Les and Joy Milne have had an enviable life from the start. They are childhood sweethearts who got married and they've also had very successful careers individually. He is a doctor and she is a senior nurse and lecturer and both of them together have three children.
Their beautiful detached home sits in the countryside of Cheshire. They have travelled extensively and had an affinity for playing squash. Being invited to the elite parties in town was also something that happened frequently to the popular couple.
Things changed when they were in their mid-30s. Joy began to notice a weird smell that her husband was giving off. He was completely fine personality-wise but the smell bothered her immensely.
"He began to smell unpleasant to me and, although we always were, and continued to be, a loving couple, I was always aware of it," Joy told the Daily Mail.
"It was a musky, greasy sort of odour and I would tell him he needed to shower and brush his teeth. He’d insist he was doing both of those things and I could tell that my complaining upset him, so eventually I stopped mentioning it."
Turns out, 67-year-old Joy was able to detect early onset of Parkinson's Deisease in Les, it had emerged. Parkinson's is a progressive disorder of the nervous system that affects movement, mood and energy.
Joy belongs to an elite group of people in the world who can detect diseases just by smell. This isn't something she knew of at that time but is glad to have.
Les started going through all the symptoms associated with Parkinson's like tremors, fatigue, impotence, hearing difficulties and eyesight issues. By the time he got the condition medically diagnosed, he was already 54.
"We had both concluded that the symptoms indicated a brain tumour," recalls Joy. "So, when the consultant said he believed it was Parkinson’s we were surprised, though of course neither condition boded well."
There is no real test for the disease and doctors tend to base their diagnosis on the symptoms that they see. By the time this is done for some sufferers, there is irreversible damage to their brains and bodies.
The Milnes' three sons grew up and never thought even for a moment that the perfect lives they were leading would come crashing down around them because of this disease.
Les was always a gentleman but it was around this time that he started lashing out at his wife. In fact, he lashed out at her on two different occasions and one of them left her with a bruised face.
Joy recalled: "The first time it happened, when we were at home, I was completely taken aback. The second time, about three weeks later, he went to lash out, I caught his arm and he backed off. As it was happening, his eyes looked blank, like he had no idea what he was doing."
"Afterwards he was utterly horrified by his actions and thankfully it never happened again. It made me sad, rather than angry, that the man I loved had done something so out of character."
Twenty years after the diagnosis, Joy watched her husband go from a clever and athletic husband to a mere shell of his former self.
When he was 50 years old, he had no other choice but to retire as a consultant anaesthetist because his hand tremors and poor concentration made it impossible to work.
From then on, Les became very dependent on the walking frame and traveling was a nightmare. The Milnes slowly started getting isolated from social circles because Les just wasn't able to handle it.
They moved back to Perth, Scotland in 2005. This is where they had first started dating when they were 16. It was here, when Joy was taking her husband to a support group for people with Parkinson's, that Joy noticed the connection between the disease and the body odour.
"After we left I said to Les: 'The people with Parkinson’s in that room smelt the same as you,'" she recalls. "As medical people we knew that this was significant."
"Les said: 'We have to go to the next meeting and test this again'. Sure enough, there were all different degrees of the odour, but I could detect it in every one of the Parkinson’s patients."
In 2010, Joy was listening to a talk by Parkinson's and stem cell researcher at Edinburgh, Tilo Kunath, that she decided to go public with her findings.
"Why are we not using the smell of Parkinson’s to diagnose it earlier?" she asked the Kunath.
Parkinson's wasn't the first disease that she could smell. When she was a student nurse, Joy was able to tell which patients had gallstones before the diagnosis was even made.
"They would have raised bilirubin, the stuff that causes jaundiced skin, and I could smell it on their breath," she says. "One time, before routine scanning, my ward sister’s aunt was in for exploratory surgery, because they thought she had cancer."
"I told my boss not to worry, that it was just gallstones. She was furious with me and said, 'Don’t go around saying things like that — you don’t know!' When it turned out to be gallstones she apologised and asked how I knew. I said I could smell it and she looked at me as if I was crazy."
"I was only 19 and quite upset, so I told my grandma who said: 'You mustn’t tell people you can do that'. It made me wonder if she had the same ability."
After she trained to be a midwife, Joy could tell by smelling a woman's placenta whether she smoked or even had diabetes. This gift is also a curse in a way because it means her olfactory senses are hightened. Joy has to wear a scarf around her nose when she goes out.
"I was ill in my 30s and diagnosed with multiple chemical allergies," she says. "It took five months to figure out what I needed to exclude from my diet and it turned out to be any food or wine containing sulphites, used as a preservative, plus tap water because of the chemicals in it."
"These things cause my body to swell, give me mouth ulcers and my stomach burns, as if I’ve drunk acid."
"I think there’s a link between this and my sense of smell being so pronounced. I can’t tolerate anything containing perfumes and only mineral-based make-up, otherwise my eyes swell and the skin peels off my lips."
"I’ve been called the “whiffy woman” and people will say to me: “Ooh, don’t sniff me, if I’ve got Parkinson’s I’m not sure I want to know”. I have detected the odour on strangers — one time on a fellow shopper in Tesco who was complaining to a friend about feeling unwell, but, until there’s a test or a cure, it’s not my place to tell them."
"Once there is, however, there will be huge advantages to finding out early, before too much damage has been done to the brain to be reversed using stem cells."
"I wish that had been true for Les so we could have enjoyed our middle age and retirement together. Sadly, it wasn’t, so now, like he asked, I’ll do whatever I’m able to help future sufferers."
There's only one thing that Joy can be certain of and that's the fact that her husband would be mighty proud of her.
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