The Woman Who Smelled Parkinson’s Before It Was Diagnosed 

Most people rely on symptoms they can see or feel shaking hands, slowed movement, memory lapses to know something’s wrong. But what if the earliest sign of illness wasn’t visible at all? What if it was something your body whispered through your skin, something only the most sensitive nose could detect?

That’s exactly what happened to Joy Milne, a retired nurse from Scotland. Years before her husband was diagnosed with Parkinson’s disease, she noticed a shift not in his behavior or his balance, but in his scent. A musky, unfamiliar odor clung to him, long before any doctor suspected anything was wrong. What she sensed intuitively would later spark one of the most promising advances in early detection for a disease that currently has no definitive diagnostic test.

When a Wife’s Nose Noticed What Medicine Couldn’t

Joy Milne was used to knowing her husband Les inside and out. They had been together since their teenage years, long before either of them became healthcare professionals. So when Joy noticed a change in the way Les smelled, she didn’t ignore it. The scent was no longer the familiar musk she associated with him. It had turned musty almost like yeast or grease. Unpleasant, but hard to describe. And crucially, it was persistent.

This was 1982. Les was 31 and otherwise healthy. Joy initially chalked it up to the operating theaters where he worked. She asked him to shower more, suspecting it was something environmental. The suggestion led to tension between them. Les couldn’t smell anything unusual and no one else could either.

But the smell didn’t go away. Over the years, Joy began noticing other shifts. Les’s personality had started to change. He became more irritable, more distant, less tolerant. These were not the man she’d known. Then came the night he physically lashed out in his sleep unaware of what he was doing. It was the breaking point that led them to seek neurological evaluation. Les was diagnosed with Parkinson’s disease at age 45, more than a decade after Joy first noticed that unfamiliar scent.

The diagnosis explained everything in hindsight. But for Joy, it also raised a question: had her nose sensed something before any symptoms showed? That idea stayed with her until a support group meeting years later confirmed it wasn’t just her imagination. She recognized the same smell on others in the room, all of whom had Parkinson’s.

Her experience wasn’t just personal; it suggested a physiological change in people with Parkinson’s that standard medical tools weren’t picking up. It would take time and collaboration with researchers, but Joy’s nose had done something modern diagnostics still can’t do: detect Parkinson’s disease more than a decade before any test could confirm it.

A Scientific Turning Point: From Anecdote to Evidence

Joy Milne’s story might have remained a strange personal memory—one of those “only in hindsight” moments if not for what she did next. After her husband’s diagnosis and that unmistakable experience at the support group, she and Les began reaching out to researchers. Their pitch was unconventional: Joy believed she could smell Parkinson’s disease.

At first, scientists weren’t convinced. One of the first researchers she contacted, Dr. Tilo Kunath at the University of Edinburgh, admits he was skeptical. Neurodegenerative diseases aren’t typically associated with odor. But curiosity got the better of him when he heard about studies showing dogs could detect certain cancers through smell. That gave him a reason to reconsider Joy’s claim.

Kunath devised a simple test. He collected T-shirts worn overnight by people with and without Parkinson’s, labeled and randomized them, and asked Joy to smell each one. She correctly identified every shirt worn by someone with Parkinson’s and flagged one from the control group that supposedly belonged to a healthy individual. Months later, that person was diagnosed with the disease.

This wasn’t a parlor trick. It was a measurable, reproducible result that suggested a biological signature tied to the condition. Joy’s sense of smell wasn’t just unusually strong—it was biologically attuned to something changing at the molecular level.

What Joy has is called hereditary hyperosmia, a rare condition that heightens the sense of smell far beyond the average range. But it wasn’t just her biology that mattered, it was her persistence. She partnered with research teams, volunteered in clinical studies, and sniffed everything from worn clothes to skin swabs. Over time, her observations helped shape one of the most promising diagnostic pathways for a disease that still lacks a definitive early test.

The Chemistry of Disease: Why Parkinson’s Has a Smell

What Joy Milne smelled on her husband wasn’t psychological or imagined it was chemical. Her nose was detecting changes in compounds released by his skin, long before the disease had a name. The key to understanding this lies in a substance called sebum, an oily secretion produced by the skin that’s rich in biochemical data.

Researchers at the University of Manchester, led by Professor Perdita Barran, focused their attention on this layer of skin oil. Using a technique called mass spectrometry, they analyzed sebum samples from people with and without Parkinson’s disease. The results were remarkable: of nearly 4,000 chemical compounds identified in the samples, about 500 were consistently different in those with Parkinson’s.

Many of these compounds are part of a group known as volatile organic compounds (VOCs) , small molecules that evaporate easily and contribute to the way things smell. In people with Parkinson’s, the disease appears to alter the production or breakdown of these VOCs, resulting in a distinct and detectable odor.

This altered scent doesn’t just appear after motor symptoms begin. It may show up years, even decades earlier. That’s what makes this discovery so important. If these chemical markers can be reliably identified and measured, they could form the basis of an early diagnostic tool, a way to catch Parkinson’s before irreversible brain damage occurs.

This line of research has led to the development of a simple skin swab test, which involves collecting sebum from the upper back or neck and analyzing it for Parkinson’s-associated VOCs. In lab conditions, the test has shown up to 95% accuracy. That’s not just promising it’s potentially game-changing in a field where diagnosis still depends largely on observable symptoms.

A Diagnostic Breakthrough in Progress

The science behind Joy Milne’s sense of smell didn’t just stop at discovery; it’s now on track to reshape clinical practice. Building on the sebum analysis, researchers at the University of Manchester developed a skin swab test that can detect chemical changes linked to Parkinson’s disease. Unlike imaging or neurological exams, this method is non-invasive, quick, and inexpensive: a cotton swab to the back of the neck, followed by laboratory analysis.

Under research conditions, the test has demonstrated 95% accuracy in distinguishing individuals with Parkinson’s from those without. This is a significant leap in a field where diagnosis has long been subjective and often delayed. But the goal isn’t just precision in a lab. It’s about bringing this tool to clinics and primary care settings, places where Parkinson’s often goes unrecognized until the disease is well underway.

Efforts are now underway to validate the test across broader populations and refine the method so it fits into real-world healthcare systems, including the NHS. If successful, doctors could someday screen for Parkinson’s as part of routine visits, long before tremors, rigidity, or cognitive decline emerge.

Beyond Parkinson’s, the success of this work is also inspiring broader exploration into other diseases that may produce unique VOC profiles. Early studies are already looking at scent-based markers for conditions like tuberculosis, Alzheimer’s, and certain cancers. Even electronic “noses” machines designed to mimic human olfaction are being trained to identify disease-specific chemical signatures.

None of this would have happened without one woman paying attention to something the rest of the world couldn’t smell.

What We Lose With Late Diagnosis and Why Early Detection Matters

For Joy Milne, science was always personal. By the time her husband Les received his Parkinson’s diagnosis, many of the subtler signs personality shifts, mood swings, even sleep disturbances had already reshaped their lives. The smell Joy had detected was there long before tremors or stiffness set in. But without a test to back her instincts, years passed without clarity.

That time mattered. Les missed out on opportunities to spend time with family, travel, and shared milestones—that could have been preserved with earlier support and intervention. Like many families navigating neurodegenerative diseases, they spent years trying to make sense of unexplained changes, often second-guessing themselves or feeling helpless.

Parkinson’s doesn’t arrive all at once. It creeps in through the background mild forgetfulness, subtle changes in gait, unexplained fatigue. By the time it’s diagnosed, significant neurological damage has often already occurred. And while current treatments can ease symptoms, they cannot reverse that damage. Early detection isn’t just about a name, it’s about giving people the power to act while they still can.

Joy and Les understood that better than anyone. In the final weeks of his life, they revisited everything—early signs, unexplained symptoms, missed connections documenting it all in the hope that others wouldn’t have to go through the same uncertainty. Their daily conversations became a gift to medical research and a tribute to the years Parkinson’s stole.

This is why diagnostic innovation matters. It’s not just about science, it’s about preserving quality of life, reducing emotional strain, and creating a path for earlier, more compassionate care. For Joy, every step forward in testing is a promise kept to the man whose scent first revealed the story no one else could see.

My Personal RX on Supporting Early Health Detection: Tips and Supplements for Long-Term Wellness

As a physician, I can tell you that early detection is one of the most empowering strategies for lifelong health. Most chronic diseases whether it’s cancer, heart disease, or metabolic dysfunction start quietly and gradually. But when we tune into subtle symptoms, support foundational systems like the gut and immune function, and get proactive with screenings and lifestyle habits, we give ourselves the best chance at catching issues early and even preventing them altogether. Prevention isn’t just about avoiding illness; it’s about building awareness, resilience, and vibrant health for the long haul.

1. Strengthen the Gut to Spot and Stop Early Imbalances: MindBiotic supports the gut-brain-immune axis with probiotics, prebiotics, and Ashwagandha—helping reduce inflammation, balance stress responses, and improve internal communication between key body systems. This foundation is crucial for catching and correcting imbalances before they progress.
   
2. Use Food as Your First Screening Tool: The Mindful Meals cookbook offers 100+ recipes designed to stabilize energy, support digestion, and reduce inflammation—so you can more clearly recognize when something’s off in your body.
   
3. Track What Feels “Normal” for You: Regularly check in on your energy, digestion, mood, skin, and sleep. Knowing your baseline makes it easier to spot early warning signs when something changes.
   
4. Get Routine Screenings—Even When You Feel Fine: From blood work and skin checks to blood pressure and hormone levels, annual screenings can catch small issues before they become major health challenges.
   
5. Pay Attention to Subtle Symptoms: Frequent headaches, unexplained fatigue, or irregular bowel habits may be early signs of a deeper imbalance. Don’t ignore the little things.
   
6. Support Detox and Elimination Daily: Proper digestion and hydration help your body clear waste and toxins efficiently. This reduces burden on your liver and immune system—key players in early defense.
   
7. Move Daily to Improve Internal Awareness: Exercise boosts circulation, mental clarity, and body awareness—making it easier to notice changes and maintain long-term vitality.
   
8. Keep Stress in Check: Chronic stress can mask symptoms or make them worse. Incorporate daily practices like breathwork, nature walks, or journaling to support both physical and emotional clarity.
   
9. Build a Collaborative Health Team: Don’t wait until something feels wrong to talk to a professional. Work with integrative providers who can help monitor your health trends and guide personalized prevention.
   
10. Make Wellness a Daily Practice, Not a Reaction: Prevention is a long game. When you fuel your body with real food, support your microbiome, and stay curious about your health, you empower yourself with tools for a longer, healthier life.