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Picture this: A package with a T-shirt shows up on your doorstep — but it’s not from your latest online shopping spree. Instead, it’s from a stranger hoping to find out if they have Parkinson’s disease.
That’s an everyday reality for Joy Milne, a Scottish woman who claims she can sniff out the condition’s telltale scent long before the symptoms appear.
The 75-year-old former nurse told The Telegraph that she no longer opens the packages herself, but for over a decade, she has been using her remarkable nose to assist scientists. Now, they are on the brink of a medical breakthrough that could make early Parkinson’s diagnosis a reality.
An estimated 1 million Americans are living with Parkinson’s disease, and nearly 90,000 new cases are diagnosed every year — making it the second most common neurodegenerative disorder after Alzheimer’s, according to the Parkinson’s Foundation.
The debilitating condition slowly ravages the brain, often damaging nerve cells for years, or even decades, before symptoms surface. As it progresses, patients encounter a range of challenges, from uncontrollable shaking and muscle stiffness to slow, labored movements and difficulty with balance.
While there’s no cure for Parkinson’s, experts stress that early diagnosis is key. Timely intervention with medications and lifestyle changes can help manage symptoms and, in some cases, slow the progression of the disease.
What does Parkinson’s smell like?
Milne first noticed her unusual talent when her late husband, Les, began emitting a peculiar musky odor. Initially, she brushed it off, thinking it was simply sweat or bad breath. But nearly a decade later, Les was diagnosed with Parkinson’s disease.
At first, Milne didn’t think much of her heightened sense of smell, which stems from an inherited condition known as hyperosmia. However, during a support group for Parkinson’s patients years later, she noticed that the same strange scent was present in others.
“By the time I left, I could tell you who had Parkinson’s, who did and who didn’t,” Milne told Sky News.
This sparked a lightbulb moment for Milne, who had a medical background and immediately recognized the significance of her discovery. She reached out to Tilo Kunath, a Parkinson’s researcher at the University of Edinburgh, offering her extraordinary nose to assist in the early detection of Parkinson’s.
To test her claim, researchers presented Milne with a collection of T-shirts that had been worn overnight — some by Parkinson’s patients, others by healthy individuals — and asked her to sort them into two piles.
“She was incredibly accurate,” Tilo told NPR.
Milne correctly identified every shirt, with one exception — she mistakenly placed a control shirt in the Parkinson’s group. But nine months later, the wearer of that shirt was diagnosed with Parkinson’s disease.
“Our early results suggested that there may be a distinctive scent that is unique to people with Parkinson’s,” Tilo said in a press release from the University of Edinburgh. “If we could identify the molecules responsible for this, it could help us develop ways of detecting and monitoring the condition.”
In the years since, Milne has been collaborating with researchers, including Perdita Barran at the University of Manchester, to develop a tool for the early detection of Parkinson’s.
Scientists believe that the scent Milne can detect may be linked to a chemical change in skin oil, known as sebum, which is triggered by the disease.
Thanks to Milne’s remarkable nose, Barran told The Telegraph that she is now “very close” to creating a non-invasive skin-swab test that could help diagnose Parkinson’s years before symptoms appear, as well as monitor its progression.
“Not only is the test quick, simple and painless but it should also be extremely cost-effective because it uses existing technology that is already widely available,” Barran said.
She expects the test to undergo early clinical trials at Manchester’s Wythenshawe Hospital later this year.
