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The Woman Who Can Smell Parkinson’s
Parkinson’s disease is one of the world’s most crippling illnesses. It can leave you not only shaking uncontrollably, but it can affect how you sleep, walk, eat, and overall function. It has impacted millions of people’s lives, including those of Muhammad Ali, Michael J. Fox, Ozzy Osbourne, and Neil Diamond. The worst part about is there’s no cure.
No one truly knows when one becomes inflicted with such a horrible disease. But Joy Milne had a unique power in that she could sense when someone had it–with her nose.
In 1995, Joy’s husband became inflicted with Parkinson’s Disease. Milne knew immediately something was wrong because she noticed a distinct change in his smell. After he was diagnosed with this and they attended a Parkinson’s support group, she noticed a similar smell in other patients with the disease.
The strange part was nobody else had this unusual and mysterious sense–only Joy. She participated in a study that only verified that what she smelled was accurate.
The ability to catch signs of the disease at the early stages is a huge breakthrough for Parkinson’s victims. But does having this specific smell mean you have Parkinson’s disease or is it still all up in the air?
Joy Milne. Photo by Chris Watt
Milne’s Powerful Scent
For the longest time, Joy Milne had a power that she didn’t even know about. It came to the forefront in the most unfortunate of ways. Milne noticed one day that her husband, Les, had an altered scent.
“He always had a lovely male musk smell,” Joy said. “Then all of a sudden, one day, his lovely male musk smell had got this overpowering sort of nasty yeast smell.”
Joy thought it was something from her husband’s hospital where he worked. She got on him to shower, but even when he did, the smell wasn’t changing.
“I kept saying to him, ‘Look, you know, you’re not washing enough,’” Joy said.
Weeks, months, and even years went by and Les continued to have this different smell. Joy constantly nagged at her husband to the point where he was getting upset about her getting on him about his odor. Joy also noticed a change in how he acted, citing more concerns.
“It was his personality, his character. He began to change. He was more moody. He wasn’t as tolerant,” Joy said.
The marriage deteriorated as Les acted completely abnormal. One night, he woke up in the middle of the night and began shaking Joy and attacking her. While he didn’t realize he was doing it, Joy told him he needed some sort of attention and begged him to get checked out, thinking he may have a brain tumor.
Les agreed and he was evaluated. When the doctor came back with the test results, he gave him the grave news: he had Parkinson’s disease.
Both Joy and her husband went to a Parkinson’s support group some time later where other Parkinson’s patients were. It was there that Joy noticed a similar smell in all of the other individuals who had the disease, a musty and greasy odor.
“I realized for some people it smelled stronger and for other people, it didn’t smell so strong,” Joy said.
The Study
Joy realized there may be something to the smell, and if proven successful, it could be a significant breakthrough in the disease. If Parkinson’s is caught early enough, while it can’t be cured, it is more treatable and less severe for much of one’s life.
After sharing her findings with the Charity Parkinson’s UK medical team, Edinburgh University called her to assess her unique skill and to see if there was something to this power. As a way to test her, the control team at Edinburgh brought out 12 patients, six of whom had Parkinson’s disease and six who did not.
“We had them wear a t-shirt for a day then retrieved the t-shirts, bagged them, and coded them,” Dr. Tilo Kunath said. “Her job was to tell us who had Parkinson’s and who didn’t.”
When the test was done, Joy shared her findings and got all but one person correct. The results were quite impressive in that she successfully determined 11 of the 12 people. However, Joy was adamant that one of the participants, a control room member, had Parkinson’s even though he was one of the members in the study who was listed as not having it.
Eight months later, the control room man who was not listed as one of the “yes’s” came forth and said he had tested positive for Parkinson’s disease. Joy, therefore, actually got 12 out of 12 correct.
Parkinson’s Breakthrough or Coincidence?
According to scientists, a change in skin condition for people with early signs of Parkinson’s leads to an altered scent. It’s not something that the normal human can detect; in fact, it takes a special someone who can sense it, that person being Joy.
After the small study, a larger one was done with more than 250 people to try and find early components of Parkinson’s. Joy took part in it and was able to help scientists in many different areas.
“We really want to know what is behind this and what are the molecules. And then can the molecules be used as some sort of diagnostic test?” Dr. Kunath said. “Imagine a society where you could detect such a devastating condition before it’s causing problems and then prevent the problems from even occurring.”
Scientists, though, are adamant that a change in smell isn’t an automatic indication one has Parkinson’s. Someone’s change in diet, job, or age can also lead to odor changes, not necessarily a sign they have the disease. Thus, while being able to have the power to smell a potential disease is a huge breakthrough, it doesn’t automatically mean one is ill.
Still, researchers worldwide have reached out to Joy and asked her to help them with their own studies and research, convinced that this superpower is a game-changer for Parkinson’s. With her help, it can impact millions of people’s lives and make it easier to treat the disease before it becomes more serious.The post The Woman Who Can Smell Parkinson’s first appeared on History Defined.
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