Her Nose Knows PD
Image courtesy Joy Milne
Joy Milne can smell Parkinson’s. She was a caregiver to her late husband, Les, when she first described the scent to a group of surprised scientists, patients and PD advocates as a musky odor on people’s skin.
Edinburgh University researchers have since tested her ability and found it valid. Patient-advocacy group Parkinson’s UK has started funding research at the University of Manchester to identify chemicals on the skin’s surface (possibly changes in the sebum) that might cause the smell in people with PD. The group’s website even credits Milne, “the ‘super-smeller’ from Scotland,” who could identify people with Parkinson's by the scent of their T-shirts.
Despite his worsening symptoms, Milne’s husband was always her biggest supporter. “Les wrote down what was happening to him,” she says. “When his writing became bad, I helped him.” A retired doctor, he also helped direct her to the place where sharing her ability could do the most good. “We had a long talk about it one night. He told me ‘You have to talk about this.’ A year later, we got an invitation to a research event from Parkinson’s UK, and Les said, ‘That’s where you need to say it.’”
Les became too ill to attend, but the power of their daily talks carried her through. Now, because she was heard, Milne hopes that others will feel they can speak up. “People are doubtful,” she says. “I put myself out there.” It’s a good thing that she did. You never know how advocacy might pay off.
Originally printed in More Than Motion, Fall 2016.