Long before Joy Milne’s husband, Les, died in June from Parkinson’s disease, she noticed something had changed with her husband long before he was diagnosed. Six years before being diagnosed, in fact.
“His smell changed and it seemed difficult to describe. It wasn’t all of a sudden. It was very subtle – a musky smell,” she said.
“I got an occasional smell.”
Joy only linked this odour to Parkinson’s after joining the charity Parkinson’s UK and meeting people with the same distinct odour. She mentioned the phenomena to scientists in a casual conversation, but they were intrigued.
So Edinburgh University decided to test her – and turns out, she was very accurate.
Dr. Tilo Kunath, a Parkinson’s UK member at the school of biological sciences at Edinburgh University, was one of the first scientists Joy spoke to.
“The first time we tested Joy we recruited six people with Parkinson’s and six without. We had them wear a t-shirt for a day then retrieved the t-shirts, bagged them and coded them,” Kunath explained.
“Her job was to tell us who had Parkinson’s and who didn’t. Her accuracy was 11 out of 12. We were quite impressed.”
She was bang-on on six of the patients with Parkinson’s, and was adamant another, a control test subject at the time, also had the disease. According to Kunath, and the test subject, he didn’t have Parkinson’s; eight months later, he was diagnosed with the disease.
“So Joy wasn’t correct for 11 out of 12, she was actually 12 out of 12 correct at that time. That really impressed us and we had to dig further into this phenomenon.”
And that’s what they’re doing, as UK scientists hope to find the molecular signature responsible for the odour and then develop a simple test such as wiping a person’s forehead with a swab.
A simple test for Parkinson’s could be life-changing, according to Katherine Crawford, the Scotland director of Parkinson’s UK.
“This study is potentially transformational for the lives of people living with Parkinson’s,” she says.
“Parkinson’s is an incredibly difficult disease to diagnose. It would be absolutely incredible and life-changing for [patients] immediately.”