Parkinson’s is a terrible disease, affecting the lives of about 10 million people around the world and one million in the United States alone. A cure has long eluded medical professionals. But that might all be about to change because of the curious ability of one woman.
Joy Milne was a nurse in Perth, Scotland.
One day in the early 1980s, she noticed a bizarre musty odor coming off her husband, Les. It bothered her so much that she pestered him to change his hygiene routine. But in spite of everything he did — increasing showers, changing soaps, and more — nothing seemed to shake the smell.
Eventually, Milne stopped mentioning it because she didn’t want to hurt his feelings.
But the smell persisted, and eventually — 12 years later — her husband was diagnosed with Parkinson’s.
For many years, Milne assumed the odor was something associated uniquely with her husband. She never dreamed it was related to his diagnosis. That’s why she was shocked, at a Parkinson’s support group in 2012, to pick up on the unique scent once again.
She started doing some research and eventually contacted Dr. Tilo Kunath, a neurobiologist at the Centre for Regenerative Medicine at the University of Edinburgh.
When Milne attended one of his talks, she raised her hand and asked him if Parkinson’s had a specific smell. He wasn’t aware of one, but her question stayed on his mind. So, the two got back in contact and set out to investigate this unique scent.
They started by supplying Milne with T-shirt samples, some from Parkinson’s patients, others from people who had no diagnosis. She was able to correctly diagnose them with 100 percent accuracy.
“One surprising thing we learned from that experiment was that the odor was always located in the back of the shirt – never in the armpit, where we expected the smell to be,” Kunath said.
It’s not inconceivable that diseases could have a smell.
Melanoma and Type II diabetes have been noted to have an odor. Since diseases change the skin microbiome, they produce metabolites. This is what Milne could smell. It stood to reason these metabolites would indicate the presence of Parkinson’s years or even decades before patients were diagnosed.
“At the moment, a clinical diagnosis is based on the patient’s physical symptoms,” said Dr. Perdita Barran, one of the doctors involved in the research.
“Doctors might say that a group of symptoms looks like Parkinson’s, but there are other reasons people might have those symptoms, and it might take another year before they’re certain. Some of those symptoms are just signs of aging, and other symptoms like tremor, are present in recovering alcoholics or people with other kinds of dementia.”
Based on these findings, researchers were able to create a test that isolated these metabolites and diagnosed developing Parkinson’s in as little as two minutes.
“Early diagnosis is good if it means there’s a chance of early intervention,” said Barran. “It stops the process of dopamine loss, which means that motor symptoms potentially will not happen, or the onset of symptoms will be substantially delayed.”
Milne lost her husband to complications of Parkinson’s in 2015. But it was his diagnosis and her extraordinary ability that have potentially changed the outcome of the same disease for millions of people to come.
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