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A decade before he was diagnosed by doctors, Joy Milne detected that something about her husband had changed. Now, scientists have been working alongside her to determine just how far her unique ability can take them...
Unfamiliar Scent
In the beginning, Joy Milne, a now-retired nurse from Scotland, noticed a strange odor coming from her husband. The year was 1982, and Joy convinced herself that her husband simply needed to take longer showers—but that was far from the case.
Persistent Odor
Joy badgered Les to keep up with his personal hygiene. After all, what else could it be? Despite his efforts, the smell lingered, and Joy learned to deal with her husband's unpleasant scent avoid hurting his feelings. A decade after Joy first detected the "woodsy" smell, Les began exhibiting symptoms...
Concerning Symptoms
Les began to experience tremors in his hands and feet, muscle rigidity, bradykinsesia, and stooped posture. It pained Joy to watch her husband growing sicker by the day. To their dismay were inconclusive. Finally, a neurologist diagnosed Les with an incurable condition...
Parkinson's Disease
Twelve years after Joy got her first whiff of the seemingly permanent musk on her husband, he was diagnosed with Parkinson's disease—a neurodegenerative condition affects over 10 million people worldwide. Les was only 44 years old. Fortunately, they story didn't end there.
Strange Coincidence
Several years went by; Joy and Les did their best to manage his deteriorating condition. In 2012 couple decided to attend a local support group meeting. When Joy and her husband arrived, she was immediately struck by a familiar scent...
What Was It?
Joy had lived alone with her husband's peculiar scent for the better part of four decades. When she walked into the meeting, she was bombarded by the same smell, more powerful than ever. It loomed over the group like a cloud...
Could It Be True?
Joy was stunned and confused. It was the first time she had encountered the scent in public. She began to wonder—was she capable of smelling the specific scent of those who suffered from Parkinson's disease?
Noticing the Link
Joy realized the smell and the disease had to be linked, but she didn't understand why or how. The 68-year-old nurse sought out the help of a neurobiologist at the University of Edinburgh to help her discover what was so special about her sense of smell...
Odd Question
Joy attended a lecture at the university by Dr. Tilo Kunath, whose work had to do with Parkinson's and stem cell biology. "During the patient engagement portion of the talk, she asked me if Parkinson's had a smell to it," Kunath said. He didn't know how to answer her, having never considered it before—but he couldn't seem to get the idea out of his head.
Recognizing the Connection
Kunath's previous research had shown him that different disease processes cause the skin's microbiome to change, releasing metabolites that may give off a certain odor. No scent had ever been associate with Parkinson's before, but medical journals cited that diseases like melanoma and Type 2 diabetes carried specific scents. Had Joy discovered a way to definitively diagnose Parkinson's?
Reaching Out
Kunath and his colleagues got in touch with Joy in an effort to test her sense of smell. They designed an unusual method for her to identify the scent of Parkinson's without her being around patients. In his free time, Kunath began to collect t-shirt samples...
Shocking Results
Kunath gathered articles of clothing from both people diagnosed with Parkinson's and those who had not received a diagnosis. In 100% of the samples, Joy was able to tell who had Parkinson's based on the shirts alone. She even detected the scent on the shirt of someone in the control group who went on to be diagnosed with Parkinson's nine months later.
Not What They Expected
The initial study revealed that Parkinson's did, in fact, have a smell. This scent could be accurately detected only by Joy Milne, oftentimes long before an actual diagnosis, as evidenced by her husband. However, the experiment introduced other surprising results...
Revolutionizing Developments
Kunath's team noted that Joy only detected the scent from the back of the shirt—never the armpit, from where they had expected the odor to originate. Kunath met with a dermatologist to uncover why this seemingly minor detail was of critical importance to the study...
Sebum Only
The dermatologist explained that the scent had to be coming froom the patients' sebum rather than their sweat glands. Sebum is not produced by the armpit, but it is heavily secreted by the upper back. Patients diagnosed with Parkinson's tend to exhibit increased sebum production. Now, having identified the source, the researchers could tackle the next issue...
New Knowledge
With the knowledge that sebum rather than sweat was the source of the "Parkinson's scent," the team was able to determine the composition of the sebum. Kunath and his associate, Dr. Perdita Barran, analyzed 64 samples to create a diagnostic test for identifying Parkinson's. Joy's unusual talents helped lead Barran's team to develop a system that now allows them to accurately identify and diagnose 9 out of 10 Parkinson's patients.
Early Diagnosis Matters
Before Joy, a clinical diagnosis could only be based on the patient's physical symptoms—an arduous and exhausting process of elimination. Some symptoms may look like Parkinson's, but it takes a year to really be sure. In other instances, symptoms are simply signs of aging or another disorder.
Delaying the Onset of Parkinson's
Early diagnosis may mean early intervention, which can stop dopamine loss and either eliminate or substantially delay the onset of motor symptoms. Sadly, despite Joy's contributions to Parkinson's research, she experienced a tragic loss only a few years after learning of her gift...
Losing Her Husband
Unfortunately, Joy's husband succumbed to complications of the disease in 2015—but his wife's dedication to science may help to prolong or improve the lives of others suffering from this devastating illness. Joy still couldn't understand why she was the only person capable of assigning scents to different diseases...
Synesthesia
Joy learned that part of the reason why she was able to describe the scent of Parkinson's was due to synesthesia, a neurological disorder in which types of sensory information are registered incorrectly. This allows her to visualize smells and even experience them as sensations...
Super Smeller
"Some smells make my back go cold," Joy said, explaining how she had to avoid certain aisles in the supermarkets because soap and makeup carried overpowering scents. Joy also belongs to a small group of "super smellers" who are capable of detecting extremely subtle smells and discerning differences between them. Joy's abilities were not overlooked by other industries outside of the medical field...
Promising Nose
Joy's sense of smell was so rare that perfumers, vintners, fragrance manufacturers, and food conglomerates sought out her incredible talents. A major perfumer in France even had Joy complete a series of rigorous tests that are used to distinguish super smellers from the rest...
Dog or Human?
The perfumer established that Joy's nose "scored off the charts," pinning her acute sense of smell "between that of a dog and a human." Joy was then studied by a sensory neurologist, who wondered why Joy was the first "super smeller" to detect Parkinson's over the years. Hadn't others noticed a distinct odor associated with the disease?
Visual Experiences
Joy was a nurse with decades of experience under her belt; she knew how to observe the physical symptoms as well as the olfactory ones. When asked whether she experienced visual accompaniments when smelling the Parkinson's scent, she exhibited a visceral reaction.
Translating the Sensation Into Images
Joy described what she pictured when exposed to the scent: "It's like a cream-colored ooze," she said. "And brown, there is brown." Eventually, Joy was asked to depict her perceptions. She drew exactly what she saw...
The Parkinson's Smell
Joy drew what she saw when she got a whiff of the particular scent of a Parkinson's patient. The images showed up in her mind voluntarily. The "0" drawing represents a healthy person—these people are "fully brown" in color. As the disease progresses, the shape changes...
Seeing the Stages
As the illness progressed, Joy drew the brown part depleting. By stage 5, "all of the person [was] gone." As she drew the images, Joy was asked if she smelled anything. She confirmed that she "got a whiff" of Parkinson's disease. The sensory neurologist expressed that Joy may have excelled at detecting Parkinson's because she engaged more visual neurons than others when smelling odors.
Detecting Other Diseases
Joy claims that she can smell both Alzheimer's and cancer, too. Apparently, cancer has an earthy scent, while Alzheimer's smells like vanilla. She also intends to work with the same team on a diagnostic test for finding tuberculosis as early as possible.
Early Detection Could Have Helped
Les' battle with Parkinson's disease was the impetus for the study that forever altered the landscape of Parkinson's diagnoses. Joy told BBC News that if the technology she had helped to pioneer had been around ten years earlier, "It would have changed things dramatically."
Dealing With the Disease
"He became withdrawn, reserved, he had bouts of depression and mood swings," Joy said. "If I had understood what was happening it would have changed our total outlook on life." Hopefully, her impact on the study will help others who may be in a similar position.