For much of her life, Joy Milne (who lives in Perth, Scotland) possessed a superpower that she was completely unaware of.
At 65 years old, Milne has long been able to detect many odors that others cannot perceive. However, it was only recently that she connected the dots between a smell “like musk” and Parkinson’s disease.
The first time Milne noticed this was when she began to detect a distinct odor emanating from her husband, Les, a busy doctor. Initially, she thought it was just the smell of sweat. But six years later, Les was diagnosed with Parkinson’s disease. “His smell changed and it was hard to describe. It wasn’t sudden, just a faint hint of musk.”
Mrs. Joy Milne.
It was not until Milne attended a meeting of Parkinson’s UK charity that she realized all Parkinson’s patients shared a similar musky smell, which led her to make a connection. Milne shared her experiences with several scientists, and they decided to investigate further…
An experiment conducted by the University of Edinburgh involved giving T-shirts to six Parkinson’s patients to wear for a day, after which the shirts were sent to Milne. She was tasked with smelling the shirts and identifying which ones belonged to Parkinson’s patients. Her diagnoses were chillingly accurate – she identified 11 out of 12 shirts correctly.
For the one shirt that Milne “misdiagnosed” – worn by a healthy person – she insisted that there was a “warning” in the smell. And she was right; this individual was diagnosed with Parkinson’s eight months after the study.
Mrs. Joy Milne and her husband.
Tilo Kunath, a researcher at the University of Edinburgh, stated, “This is truly impressive. We need to study this phenomenon further.”
Researchers believe the odor that Milne identified could lead to groundbreaking discoveries in dealing with Parkinson’s disease, a condition that is extremely difficult to diagnose.
Kunath and his colleagues published their research in ACS Central Science in March 2019, naming Joy as a co-author. Their study identified specific compounds that may contribute to the odor Joy detected in her husband and other Parkinson’s patients.
At that time, Kunath remarked that Joy’s extraordinary olfactory ability opened up a completely new area of research. Researchers, including Perdita Barran at the University of Manchester, led a subsequent larger study and found 10 compounds associated with Parkinson’s disease using mass spectrometry measurements and other techniques to analyze samples from 274 individuals. According to Barran, they hope to develop a way to diagnose Parkinson’s based on biological traces on the skin.
Kunath emphasized that the ultimate goal is to develop a new tool for the early detection of Parkinson’s disease. He stated, “We really want to know what lies behind this and what the molecules are. And then whether these molecules could be used as some form of diagnostic test?“
Mrs. Joy has flown to Tanzania twice to see if she can smell tuberculosis
According to Kunath, Parkinson’s disease develops gradually, taking years or even decades before symptoms like tremors appear. He added, “Imagine a society where you could detect such a devastating disease before it causes problems and then prevent those problems from occurring.” Coupled with potential therapies to prevent or alleviate Parkinson’s, molecular tests identifying the disease would be a powerful tool.
Richard Doty, director of the Smell and Taste Center at the Perelman School of Medicine at the University of Pennsylvania, noted that there is some evidence suggesting that smell can indicate the presence of certain diseases. He said, “In the past, doctors used breath odors and other smells to identify certain disorders. But currently, that is not really applied because we have many better ways to diagnose everything.” He also stated that smell is an imperfect biological marker as confounding factors can influence human odor, such as diet and age.
Dr. Thomas Hummel from the Smell & Taste Clinic at the Technical University of Dresden said, “The idea of olfactory biological markers is very appealing. However, many questions remain unanswered.”
However, Joy’s extraordinary superpower has led researchers worldwide to begin collaborating with her, discovering that she can identify various diseases such as tuberculosis, Alzheimer’s, cancer, and diabetes.
She has been appointed to the clinical science subcommittee of the World Parkinson Congress. She has given interviews and been listened to by some of the world’s most reputable scientists. Randy Schekman, a Nobel laureate and scientific director of the Parkinson’s disease research initiative called ASAP, stated, “We need to trace the origins of the disease from what she has discovered to see what caused it. She is a rare asset.”
Mrs. Joy has flown to Tanzania twice to see if she can smell tuberculosis. In East Africa, the nonprofit organization Apopo uses giant African pouched rats to diagnose diseases, but Mrs. Joy has proven to have a better sense of smell than these rats. Amazon has contacted her co-authors about potentially integrating olfactory functions into its Alexa devices.
Reflecting on her life with her husband, Joy mentioned that when it became clear she could hold a tool that could advance research on Parkinson’s disease, her husband had a breakthrough moment. They had more knowledge to contribute to science. Mrs. Joy detected her husband’s Parkinson’s disease over a decade before he was diagnosed. Mr. Les told his wife that if they carefully considered their shared life before the official diagnosis, they would be able to accurately identify the initial symptoms that had not yet been recognized by science.
Mrs. Joy detected her husband’s Parkinson’s disease over a decade before he was diagnosed.
Mrs. Joy stated, “We have to write down everything that happened so that medicine can understand what is happening to people with Parkinson’s disease.”
Thus, in the last six weeks of Mr. Les’s life, he and his wife sat down to write every day. She recalled, “Usually, we would write for just 35 to 40 minutes each time, but those six weeks were entirely different. We spent time every day discussing what had happened to us over the past 20 years.”
Mrs. Joy noted that her husband always avoided discussing his Parkinson’s disease. It seemed the illness threatened his very existence, leading him to dismiss it and unable to acknowledge it. But he was liberated through their discussions.
In fact, Mrs. Joy said the research she conducted with her nose was the last thing they talked about. He said to her, “I’m not going to let this pass. You will do this, won’t you? You promise?”
Just hours later, he passed away. But Mrs. Joy was right. She said, “I did it. I kept my promise. So this will make a huge difference.”
