If you could have any superpower...
What would you choose?
Joy’s superhuman sense of smell could unlock life-changing new Parkinson’s treatments.

A polar bear can follow the scent of its mate from 100 miles away.

An elephant can sniff out water from a 12-mile distance.

But Joy, a 68-year-old retired nurse from Scotland, has an even more impressive sense of smell. 

She can smell Parkinson’s before it’s diagnosed.

It started when Joy noticed a change in her husband Les' scent. She described it as “musky, thick and heavy”. 

10 years later, Les was diagnosed with Parkinson’s.

After Les’ diagnosis, Joy joined Parkinson’s UK. When she visited a local Parkinson's UK support group, she started meeting more people with the same distinct odour as her husband. Every one of them had Parkinson’s. She says:

My nose just thought 'wow'.

Later, at a Parkinson’s UK research event, Joy spoke to one of the top scientists at Edinburgh University. 

She told him she thought she could smell Parkinson’s...

The scientist was very surprised and intrigued. So much so, that they decided to put me to the test!

— Joy

The Edinburgh team recruited six people with Parkinson’s and six without to test Joy’s newly discovered superpower. 

Each person taking part in the experiment was asked to wear a T-shirt for a day. Joy then had the not-so glamorous job of working out who had Parkinson’s from smelling their shirts. 

The results were astounding….

  • Joy identified each of the six people who said they had Parkinson’s correctly – purely through her sense of smell
  • But the six people who said they didn’t have Parkinson’s? Joy was adamant that one man in the group actually did have the condition
  • Unbelievably, eight months later, the same man was diagnosed with Parkinson’s
  • So Joy’s nose had managed to diagnose Parkinson’s before anyone else knew he had it – before any of the usual symptoms of the condition appeared
Amazing? Yes. But for Parkinson’s UK, Joy’s superpower wasn’t just a fun fact.

We’re chasing breakthroughs, sometimes in the most unlikely places. We knew Joy’s unique ability could potentially be life-changing. 

So we funded research, led by the University of Manchester, to identify chemicals on the skin that could be causing the smell.

Why? Because Joy’s discovery could be the key to diagnosing Parkinson’s earlier than had ever been thought possible.

Why is early diagnosis so crucial for people with Parkinson's?

Parkinson's is what happens when brain cells that produce dopamine start to die. It gets worse over time, and there’s no cure. Yet. 

By the average time someone is diagnosed, around 50% of their dopamine-producing cells have already died.

This is why early diagnosis can be so life-changing. The earlier we can diagnose Parkinson’s, the better chance we have to stop it progressing.

What did the research find?

The research revealed that a number of chemical compounds were more present on the skin of people with Parkinson's.

These compounds could act as “biomarkers” – tiny changes in the body that can be measured to diagnose or monitor the condition.

This revelation could lead to a remarkably simple early detection test for Parkinson’s – such as wiping a person's neck with a swab and testing for the signature molecules.

Professor Perdita Barran, who led the investigation, says:

 

If we can diagnose people earlier, before the motor symptoms come in, it could lead to treatments that can prevent the condition progressing. That's really the ultimate ambition.

— Professor Perdita Barran

No one does research quite like Parkinson’s UK. We know that pioneering research means embracing the strange and unexpected. It means being bold when others are thinking “that’s crazy”. Joy’s nose set in motion an epic sequence of events – and the results could be huge for the 145,000 people living with Parkinson's in the UK. 

Joy’s husband Les sadly died aged 65, but their discovery could change lives for generations. Joy’s superhuman nose has opened new doors in research and could lead to incredible new treatments. One thing’s for certain: not all heroes wear capes.

Be part of the breakthroughs

Impatience is a virtue. Let’s get to the next breakthrough, faster.
What is it like to live with Parkinson's every moment, of every day?

When I think that I have about 50 years to go and every day is already a struggle, it’s scary. You start thinking you don’t want this life anymore. That’s a mental battle I have to face.

— Drew

Video

Slice title
Meet Drew

Slice text

He’s 36, married with two young kids, and loves playing guitar. But Parkinson’s is putting everything he loves at risk. 

Want to know more about Parkinson's?

1. The number of people diagnosed with Parkinson's in the UK is about 145,000. That's around 1 adult in every 350.

2
people every hour are diagnosed with Parkinson's
 
 
 
 
 
 

3. Parkinson's has over 40 symptoms, from tremor and pain to depression and anxiety.

4. Some symptoms are treatable, but the drugs can have serious side effects.

5. There is no cure. Yet. That's why we need you. Together, we'll find a cure. 

Be part of the breakthroughs

We need you on our team. Help power the next breakthrough.  By giving us your email address, you are agreeing that we will contact you regarding our monthly newsletter. At Parkinson's UK we want to be very clear about how we use, store and protect your personal data, which you can read about at parkinsons.org.uk/privacy

Chip in and help chase down a cure

Your donation could kickstart the next discovery. Donate today.