I saw a pretty outlandish medical story on tiktok recently that strained credulity. A quick fact check revealed it to be mostly accurate with perhaps a bit of dramatic license. But truly, ‘woman literally goddamn sniffs out Parkinson’s disease’ was dramatic enough.
Today’s Moment of Science… Joy Milne’s Diagnostic Sniffer.
Hyperosmia, ranked right below hindsight as the lamest superpower in the Marvel Universe, is the technical term for having an oddly strong sense of smell. Though it’s typically genetic, there are anecdotes of it being drug induced by methotrexate or amphetamines. Some people with hyperosmia are sensitive to one type of odor. Others find a range of odorants in the normal background stench to be overpowering and unpleasant.
So, Joy Milne had a problem.
Well, she had hyperosmia which she’d been able to deal with just fine, thank you very much. She met her husband Les when they were teenagers. A match made in olfactory heaven, she’d found a teenage boy who didn’t smell like cum and gym socks. The two had a lovely life in Scotland. He became a doctor, and Milne went on to become a nurse, which feels a bit like setting hyperosmia to hard mode. She experienced years of medical malodors in technicolor.
One day, she thought her husband’s previously enjoyable musk suddenly, inexplicably, goddamn stank. Like one of those early pandemic sourdoughs long forgotten, she described it as a nasty, yeasty, musty smell. She thought there was perhaps a hygiene issue and nagged him to bathe more thoroughly when he got home from work because this smell couldn’t simply generate itself out of nowhere, right?
At first Les bathed more thoroughly as requested, but it didn’t help. He couldn’t smell it, and nobody else seemed to detect a whiff either. He grew frustrated with her demands to suds off every last skin cell he’d grown since birth and eventually pushed back, stomping off when she brought it up.
For Joy, the odor continued growing stronger. But after a while, that wasn’t her biggest concern with her husband. Over the next decade, he wasn’t merely grumpy about this odor thing. His personality shifted, becoming impatient and moody. She awoke to him screaming and shaking her one night, “oblivious” to what he was doing. Though that incident could have been a nightmare, Joy thought it was time for him to see a doctor.
Les was diagnosed with Parkinson’s disease at the age of 45 in the mid-1990s. At a support group meeting in 2012, upon entering a room full of people with her husband’s diagnosis, Joy was confronted with a wave of that same musty, yeasty odor.
It smelled like a motherfucking medical epiphany.
How difficult is it to go from “I’m pretty sure I can smell Parkinson’s disease” to a legitimately proven scientific breakthrough? The hardest step might be piquing the curiosity of the right scientist. At first when they contacted Tilo Kunath, a Parkinson’s researcher at the University of Edinburgh, he was like “really?” Then he read research on how dogs could sniff out cancer and figured, eh, what the hell?
Kunath devised a little test. He had six patients with Parkinson’s and six control patients wear t-shirts to get them nice and odor’ed up. When Milne was asked to identify which shirts were from the patients with Parkinson’s, she got all six. She also identified one from the control group as having the neurodegenerative disorder.
The patient in the control group whose shirt Milne identified as positive? Well, eight months later, they were diagnosed with Parkinson’s. Her sniffer was a better early detection system than anything science had to offer.
They started working out what was happening. Various chemical biomarkers are released in the sebum of people with Parkinson’s that aren’t found in control patients. From over 4,000 compounds that were tested, 500 or so measurably vary between the two groups. Reportedly, some of the compounds are only found in the sebum of patients with Parkinson’s.
At this point, a test using a skin swab is in development. Published in September of 2022 in the Journal of the American Chemical Society, Joy Milne was one of the authors. It’s unclear how far the test is from being used in labs around the world, but the results are an impressive leap from “my husband stinks.”
It’s important to note that there’s no one test to diagnose someone with Parkinson’s; clinical evaluation, medical history, and idk like four other things are considered. But if there existed early testing, one day there might be a shot at beating back this devil before it takes what can’t be reclaimed.
Joy is in her early 70s now. From her efforts to test and identify the smell behind Parkinson’s, she’s been named an honorary lecturer at the University of Manchester.
Les passed away in 2015 at the age of 65 from Parkinson’s disease.
This has been your Moment of Science, curious if anyone else smells that?
Join the discussion!