“We were very, very much in love,” Joy Milne says about her husband, Les Milne, in an extraordinary profile in The New York Times. She and Les were young then, and so happy, raising their children, throwing parties, living in an old farmhouse.
That was before Joy noticed an unusual odor coming from her husband one evening.
Forty-two years have passed since Joy first picked up that smell on Les – the smell of Parkinson’s disease. In the Times essay published in June, Scott Sayare, a writer in New York, explores and details the journey Joy has been on. It’s a journey that involves not only the deterioration of the man she loved and the care she gave him, but also the pursuit to better understand Parkinson’s. And better detect it.
Across the decades, Joy, “a supersmeller,” has teamed up with prominent scientists and researchers. From their workings and studies, they’ve found that people with Parkinson’s have higher concentrations of three chemicals in their sebum, a substance secreted by the skin. Joy is “a rare commodity,” the Nobel laureate Randy Schekman tells Sayare, not only because she can detect those chemicals, but also because she can detect them on a person years before they are diagnosed.
Unfortunately, “sebum is among the least studied biological substances,” Sayare points out in his profile. He also lays out the reality of “the smell taboo,” or the scientific (and societal) unwillingness to acknowledge and investigate odor. “That Parkinson’s has a distinctive odor and chemical signature has now been thoroughly demonstrated,” Sayare writes, “but on its own this concept is not much more than a curiosity.”
That hasn’t stopped some of the scientists Joy has worked with from imagining a sebum test that could easily screen for Parkinson’s, and screen for it on a massive scale. A single cotton swab, mailed out, that could lead to a diagnosis. Of course, Sayare notes, other researchers are less certain of this possibility – it could be one of a number of tests yet to be developed that would work in tandem to detect the disease.
But the fact of a Parkinson’s scent is out there now. And so too is Joy.
