Scent Of Muskthe Woman Who Can Smell Parkinson’s
Joy Milne and her valuable nose
On St. Andrews beach on Scotland’s east coast, you might run across a solitary woman on occasion, walking close to the water where the sand is wet and firm. The North Sea wind blows her gray hair over her ears as the woman closes her eyes and holds her nose into the wind. Her nose quivers and lifts, as though she’s about to sneeze.
The woman’s name is Joy Milne. She spent 26 years working as a nurse, raised three sons and cared for her ailing husband. Now, she is widowed. She spends her time traveling and enjoys taking long walks. She is 69 years old.
Her nose is a bit crooked perhaps, neither particularly big nor particularly small, and when she takes her glasses off, which she does to look out at the sea, you can see two dimples where they usually rest. But Milne’s nose is special: She has a much better sense of smell than most people.
She can smell coffee even before she opens the door of a café and registers the scent of her grandchildren before she wraps them up in a hug. But she can also smell things during the day that she doesn’t necessarily want to smell.
Exhaust fumes, butcher shops, perfume stores, the air in airplane cabins: Joy Milne’s nose runs and bleeds when the world around her stinks. Not only that, but unpleasant odors make her cold. Her escape is the North Sea.
Something Monumental
Enemy in the Brain
A sebum swab from the Manchester Institute of Biotechnology.
‘A Strong, Masculine, Musky Smell’
Deep Purple
Progress Towards A Skin Swab Test
These early findings were exciting and encouraging. The scientists knew that if they were able to identify a unique chemical signature in the skin linked to Parkinsons, they may eventually be able to diagnose the condition from simple skin swabs.
There is currently no definitive test for Parkinsons disease, with diagnosis based on a patients symptoms and medical history, a process that can take several years. The development of a test like this would therefore be a game-changer for the Parkinsons community.
With Joys help, the research team, now led by Perdita at the University of Manchester, continued to make progress. In 2019, they announced a major breakthrough the discovery of chemicals enriched in skin swabs from people with Parkinsons.
This key discovery led to further research to profile the complex chemical signature in sebum of people with Parkinsons. Through this work, scientists found subtle but fundamental changes as the condition progressed.
This meant that a skin swab could potentially not only be used to diagnose Parkinsons, but could also be used to monitor the development of the condition.
Professor Perdita Barran said: We believe that our results are an extremely encouraging step towards tests that could be used to help diagnose and monitor Parkinsons. Not only is the test quick, simple and painless but it should also be extremely cost-effective because it uses existing technology that is already widely available.
What The Research Team Are Doing
The team aim to recruit up to 200 people with and without Parkinson’s to have a skin swab taken and fill in a brief questionnaire.
The samples will be analysed by Perdita and her team to look for differences in the amount and type of chemicals present.
The samples, which will be anonymised, will also be assessed by the original ‘supersmeller’ who was the inspiration for the project, as well as a team of other smell experts from the food and drink industry.
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How Were Her Olfactory Abilities Tested
Scientists already know that Parkinsons disease can cause excessive production of sebum, a natural waxy, lipid-based bio fluid that moisturises and protects the skin but makes sufferers more likely to develop the skin complaint seborrheic dermatitis.
Sebum samples were taken from the upper backs of 64 volunteers, some with Parkinsons and some without, and given to Milne for analysis. In order to identify exactly which biomarkers were giving off the scent she was picking up, researchers at the Manchester Institute of Biotechnology used mass spectrometry to identify the molecular compounds that give the condition its unique odour.
Analysis of the sample data revealed the presence of hippuric acid, eicosane and octadecanal which indicates the altered levels of neurotransmitters found in Parkinsons patients along with several other biomarkers in the sebum of those people with the condition.
What Do The Results Mean
The take-home message here is that “sniff tests” may be able to predict a person’s risk of developing Parkinson’s disease. That said, there are a few caveats to keep in mind.
One is that a loss of smell can be due to other health problems besides Parkinson’s. Other neurological diseases like Alzheimer’s can cause smell disturbances, as can non-neurological conditions like chronic rhinosinusitis. This is why devising a smell test that is specific for PD is important, and researchers have not yet sorted this all out.
Secondly, “smell tests” must test for the correct smell disturbance. Simply saying a person has a loss of smell is rather vague. Perhaps one person has a hard time discriminating between odors while another cannot identify odors. Or a person may have a higher threshold for detecting odors.
With that, research suggests that in Parkinson’s, there is a favorable decline in odor identification, rather than odor detection, meaning they can “smell it,” but not say what it is.
Lastly, it’s critical to remember that a link or association is simply a connection or a finding based on statisticsit’s not 100 percent predictive of any one individual. In other words, a person could lose their sense of smell and never develop Parkinson’s disease. Likewise, there are people with Parkinson’s disease who retain their sense of smell.
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Passing The Smell Test
The T-shirt test was intriguing, but we have to take it with a scientific grain of salt. After all, there are lots of reasons people might share an odor.
In one notorious dead end, researchers were convinced there was a smell linked to schizophrenia, and a particular compound called TMHAsaid to smell like a goatwas identified and described in the prestigious journal Science. There was hope this chemical might even be the cause of schizophrenia, which would open up new avenues for treatment.
But in years of follow-up testing, the results couldnt be repeated. The TMHA schizotoxin went the way of tabletop nuclear fusion.
Barran is now at the Manchester Institute of Biotechnology, where shes applying the painstaking methods of chemistry to determine whether the Parkinsons smell is the real deal. She and her colleagues hope to develop a smell test for Parkinsons, one more rigorous and more practical than having Mrs. Milne smell all our T-shirts.
First, the team is working to chemically identify the molecules involved, which is harder than it looks on CSI. Of the thousands of known volatile compounds, many are not well characterized or data on them exists only within the fragrance industry.
Barran says shes up for the challengeeven though her own sense of smell was damaged in an accident and she cant smell the Parkinsons odor herself.
Smell Of Parkinsons Finally Identified Early Detection Test On The Way
In the early 1980s, nurse Joy Milne began to notice a distinct musky odor on her husband. A few years later her husband was diagnosed with Parkinson’s disease, but Milne didn’t connect the two disparate events until she later joined a Parkinson’s charity and started meeting other sufferers. It was here she began to notice every person with Parkinson’s disease could be identified by this same unusual and distinct odor.
In 2012, Milne approached a neuroscientist giving a talk on Parkinson’s and claimed to be able to smell the disease. The scientist decided to test her claim. Six Parkinson’s patients, and six healthy subjects wore clean t-shirts for a single day, and the 12 t-shirts were then individually bagged and presented to Milne. After extensive sniff testing, Milne ultimately guessed 11 out of 12 correctly, only misidentifying one t-shirt as being worn by a Parkinson’s patient, when in fact it was a healthy subject.
Since then, a team of scientists has been working to isolate and identify the compounds Milne associated with Parkinson’s. Now, after several years of work, the researchers claim they’ve been successful and suggest the discovery could lead to an early detection test for the devastating disease.
The new research was published in the journal ACS Central Science.
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What To Expect From Diagnosis
Theres no single test for Parkinsons, so it can take some time to reach the diagnosis.
Your doctor will likely refer you to a neurologist, who will review your symptoms and perform a physical examination. Tell your doctor about all the medications you take. Some of these symptoms could be side effects of those drugs.
Your doctor will also want to check for other conditions that cause similar symptoms.
Diagnostic testing will be based on your symptoms and neurologic workup and may include:
- blood tests
Maple Syrup Urine Disease
Imagine having a bathroom filled with the sweet smell of maple syrup every time you use the toilet. Well, people with the disorder known as maple syrup urine disease experience just that. This disease is an autosomal recessive metabolic disorder that affects the way that patients can break down certain amino acids. Patients with this disease are not able to correctly break down amino acids with branches including valine, leucine, and isoleucine. This means that these amino acids must exit the body through the urine, causing a distinct odor.
While MSUD may sound extremely pleasant, it is actually anything but. Infants who are affected with the disease seem healthy at birth but rapidly deteriorate, eventually suffering from brain damage and death if their condition is left untreated. Later onset can lead to a continuum of symptoms ranging from weight loss and diarrhea to uninhibited behavior and hallucinations. The sweet-smelling urine can actually warn of an attack of these symptoms.
It is extremely important for patients to control their intake of branched amino acids, as they are found in many, many foods. There is currently no cure for the disease, but steps can be taken to control the severity of symptoms.
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Scientists From Manchester University Are Working On A World
arkinsons is a progressive neurological condition that develops when nerve cells in the brain that produce the chemical dopamine stop working properly and then die. Symptoms including tremors, slowness of movement and rigidity start to appear when the brain cant make enough dopamine to control movement properly.
The causes of Parkinsons are unknown, but researchers believe a combination of environmental and genetic factors cause the dopamine-producing nerve cells to die. The number of people diagnosed in the UK is approximately 145,000, or one in 500, and that figure rises to about one in 100 among the over-60s.
At present, there is no cure and no definitive test for the condition, with clinicians diagnosing patients by observing symptoms.
What Does Disease Smell Like
Joy Milne is a super-smeller. These people have a superior sense of smell and are sometimes sought after by perfume or wine manufacturers.
For Joy, however, her sensitive nose meant that she detected an unusual odour on her husband, Les. Initially she thought that perhaps he wasnt showering enough, but 12 years later he was diagnosed with Parkinsons disease. She only made the connection between the condition and the aroma after noticing the same smell on people at a Parkinsons disease support group.
Read more about smelling disease:
She has since worked with scientists at the University of Manchester to identify the chemicals underlying what she says is the characteristic smell of the condition, which could help lead to earlier diagnosis. Joy is now the linchpin for ongoing smell research. This is what she says about some common diseases:
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Smell Loss As A Potential Diagnostic Tool
While there is no treatment for smell loss, this symptom is valuable in research toward earlier diagnosis and therapeutic intervention.
Early detection is a crucial step to understanding the causes of and developing better treatments for Parkinson’s disease . Even before the typical tremor and slowness of movement occur, it may be possible to detect early changes in the brain and symptoms that are associated with PD.
The Michael J. Fox Foundation’s landmark study, the Parkinson’s Progression Markers Initiative , is studying people with smell loss. Some people who enrolled in PPMI with only smell loss have since developed Parkinson’s disease. By looking back at the brain scans and blood tests those volunteers contributed before their Parkinson’s diagnosis, scientists can understand what is happening in the earliest stages of the disease. That information could lead to early diagnostic tests and treatments to slow or stop Parkinson’s progression, perhaps before tremor or slowness begin.
The medical information contained in this article is for general information purposes only. The Michael J. Fox Foundation for Parkinson’s Research has a policy of refraining from advocating, endorsing or promoting any drug therapy, course of treatment, or specific company or institution. It is crucial that care and treatment decisions related to Parkinson’s disease and any other medical condition be made in consultation with a physician or other qualified medical professional.
The Scent Of Parkinsons Disease
Most of us have told someone, You smell sick. Infection and metabolic diseases are often associated with a pronounced change in how a person smells. Researchers are now discovering that many disease states alter metabolism, either overall or of specific tissues. These metabolic changes lead to changes in volatile molecules, which are gaseous compounds that can be either smelled or detected with special laboratory equipment or even dogs .
Figure 1. Training dogs to detect cancer by smell. Read more
The set of volatile organic compounds that are associated with an organism is called the volatilome. Changes in the volatilome can affect the odors associated with various parts of a persons body. We can smell changes that affect a persons breath, sweat, urine, or feces. Some dogs can sniff out cancer, likely by detecting the changes in metabolism of the cancer cells that cause changes in molecules that the dogs can smell. Some dogs can detect when a person is about to have a seizure. Could this also relate to changes in brain metabolism that lead to a detectable change in how the person smells?
Figure 2. The approach for detecting the molecules responsible for the unique smell of Parkinsons disease patients. Read more
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When To See Your Doctor
Its easy to assume these problems have other causes, and they often do. But any of these non-motor symptoms can have a big impact on your overall quality of life.
Having one or more doesnt necessarily mean you have Parkinsons disease or that youll eventually develop it. But its worth consulting with your doctor.
Tell your doctor if youre concerned about having Parkinsons disease. Although theres no cure, there are medications to help control symptoms.
Dr Clara O’brien Consultant Neuropsychologist Explains How Loss Of Smell Can Affect People With Parkinsons
Loss or reduction of smell is common in Parkinsons, with up to 95% of people experiencing it to some degree. It can be one of the earliest symptoms, and people often report experiencing loss of smell before they even have any difficulties with movement.
There is debate about why people with Parkinsons experience it, but recent research has found that the part of the brain that processes smell the olfactory bulb was smaller in a group of people with Parkinsons.
Loss of smell can affect people in different ways. We rely on our sense of smell to taste food, so reduced smell can lead to weight loss or weight gain.
It can also affect your mood, relationships and overall quality of life. In addition, loss of smell can affect your safety for example, being unable to smell food burning. It does not respond to Parkinsons medication, so is unlikely to get better even with this treatment.
Loss of smell is something of a hidden symptom, so talking to others and making them aware can help them to understand how you are affected. If your mood is affected, do talk to your GP about accessing treatment for this.
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What It Feels Like To Have Parkinsons Disease
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In 1985, science journalist Jon Palfreman investigated a group of drug addicts who were struck with Parkinsons-like symptoms after taking tainted heroin.
Thirty years later, Palfreman was diagnosed with Parkinsons disease himself. His book, “Brain Storms,” describes his journey with the disease and new treatments for patients.
Initially I denied and sought second opinions. I got pretty angry. I tried to keep it secret for a while, just like Michael J. Fox did, Palfreman says, It took me, Id say, about a year before I really processed it properly and then I realized that I had a destiny to use my training as a science journalist and my insights as a patient to explore this malady, which was now going to be part of my life.
About 60,000 people each year in the US alone are diagnosed with Parkinson’s disease. Palfreman says the malady means many things that he used to do automatically, now come with much more difficulty.
It is very much like getting on a plane and going to London and renting a car. You can drive on the left-hand side of the road, but you have to use your conscious brain to pay attention. Everything’s a bit harder. When I walk, I have to sort of consciously move my arms back and forth. Whereas, when a healthy person does it, it’s automatic. And so a lot of things that you got for free you have to work at, Palfreman says.
Palfreman says there are other things people with Parkinsons can do to control the disease.