Parkinson’s Sufferer Describes Her Life With The Disease
Not only did she identify the six worn by the Parkinsons sufferers, but she also pointed out someone from the control group with the smell who was later diagnosed after the study.
Dr Tilo Kunath, from Edinburgh University, said: “She was telling us that this individual had Parkinson’s before he knew, before anybody knew.
“So then I really started to believe her, that she could really detect Parkinson’s simply by odour that was transferred on to a shirt that the person with Parkinson’s was wearing.”
Joy promised her husband before his death that she would investigate her unusual ability.
Woman Who Can Smell Parkinsons Disease In Patients Even Before Symptoms Appear May Help Researchers Develop New Clinical Laboratory Test
She worked with researchers at the University of Manchester in England to identify volatile biomarkers for Parkinsons disease that may lead to first noninvasive screening
Clinical pathologists and medical laboratories are used to working with certain biological indicators that drive diagnostics and clinical laboratory testing. Mostly, those biomarkers are contained within various liquid samples, such as blood and urine. But what if a persons odor could accurately predict risk for certain diseases as well?
Far-fetched? Thats what Parkinsons researcher Tilo Kunath, PhD, first thought when he was contacted by a woman who claimed she could smell Parkinsons disease coming from her husband. Kunath is Group Leader, Reader in Regenerative Neurobiology, at the Center for Regenerative Medicine at the University of Edinburgh, and head of the Tilo Kunath Research Group, which focuses on how the protein, alpha-synuclein, causes degeneration of neurons in Parkinsons patients, as well as on producing a cell-based therapy for Parkinsons disease.
Joy Milne, a retired nurse from Perth, Scotland, is the women whose heightened sense of smell enabled her to detect her husbands Parkinsons a decade before he was diagnosed with the disease.
Dogs Can Do It, Why Not Humans?
Andrea Downing Peck
How A Smell Test May Predict Parkinson’s Disease
Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology.
When people think of Parkinson’s disease, the first symptoms that usually come to mind are motor symptoms like a resting tremor, rigidity, or a slowness of movement.
But nonmotor symptoms, like mood disorders and sleeping problems, are also common in Parkinson’s. One nonmotor symptom that experts are particularly focusing on is a loss of smell, which occurs in approximately 90 percent of people with early-stage Parkinson’s disease.
This loss of smell not only impairs a person’s quality of life, but it’s one of the earliest symptoms of Parkinson’s.
So taking this idea a step farther, experts believe that if a person’s smell disturbance is detected early, it could provide a clue to their underlying neurological diseaseand there is now research that has turned this idea into reality.
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Losing My Sense Of Smell To Parkinson’s
Barrie talks about how losing his sense of smell was one of the first Parkinsons symptoms he experienced. We also meet Dr Clara O’Brien who talks about managing this symptom.
I was around 30 when I first went to the GP. I remember smelling something awful, like electrical burning an ionised, smouldering aroma.
It had happened a couple of times, until one day I lost my sense of smell completely.
My GP put it down to scuba diving when I was younger, and how the pressure may have damaged something. He said there was little they could do, and Id just have to get used to it.
Almost 20 years later, after developing a tremor in my finger, I was given a diagnosis of Parkinsons. It was only then that I found out the two were linked.
Your sense of smell affects your sense of taste, so I cant really taste things either. Ive mostly gotten used to it, but I have had to adapt the way I do things.
In the kitchen, Im a very heavy seasoner. You really need to love garlic and spice if you want to try my cooking. I live with my wife and grown-up daughter. My wife usually taste-tests things and deems if theyre passable for other people.
We have lots of carbon monoxide detectors in the house. It’s a worry, but you have to just deal with it.
Not having a sense of smell does have its advantages. Our dog creates some very bad odours, none of which I have to worry about. I also went to Glastonbury, and not being able to smell the toilets is nothing short of a super power.
A Rapid Diagnostic For Parkinsons
To take the smell test, the capsules are crushed between the fingers and the tape strip is peeled. This releases an aroma, and researchers can then score a persons ability to recognise the smell.
In a study, published in the Journal of the Royal Society Interface, a small group of eight people with Parkinsons disease took the capsule smell test, as well as a scratch and sniff smell test. In both tests, they were asked to identify six different scents: coconut, menthol, cherry, orange, clove and onion. In each round, patients were asked to share what they smelled.
The results showed that odours were easier to identify in the capsule smell test. The participants also highlighted the ease of crushing capsules compared to the scratching method, particularly for those with tremors. Although smell tests for diagnosis already exist, they are expensive and not widely available.
Dr Ahmed Ismail, lead researcher of the study, said: Our capsule-based smell test can assist in the rapid diagnostic of various diseases linked to the loss of smell.
Dr Ahmed Ismail, lead researcher of the study.
He continued: Most of the smell tests on the market depend on using paperboard items treated with a fragrant coating called scratch and sniff, in which you need to scratch a card to release the odour. The problem with this approach is that the amount of odour released depends on the extent to which the individual scratches, something that might affect the outcome of the test.
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Trouble Moving Or Walking
Do you feel stiff in your body, arms or legs? Have others noticed that your arms dont swing like they used to when you walk? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinson’s disease. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem stuck to the floor.
What is normal?If you have injured your arm or shoulder, you may not be able to use it as well until it is healed, or another illness like arthritis might cause the same symptom.
Looking At Brain Structures
The area of the brain that controls our sense of smell is referred as the olfactory bulb, which receives the signals sent from olfactory sensory neurons whenever the noses sense a smell.
These neurons are responsible for allowing us to use our sense of smell to detect the world around us. Having a good sense of smell not only allows us to enjoy our food but can also help us avoid danger, such as during a gas leak.
Researchers found that the functional units of the olfactory bulb, known as its glomeruli, were reduced by more than half in Parkinsons patients when compared to those without the disease. Normally, the glomeruli component of the olfactory bulb should be about 70 percent of the structure, however, in Parkinson patients, it was found to only encompass 44 percent of it.
This discovery provides additional evidence that Parkinsons disease may initially begin with bacteria, viruses, or environmental toxins entering the brain, possibly entering through the nose. Once the olfactory bulb has been infected, it would then trigger a gradual spread throughout the brain.
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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.
Why Loss Of Sense Of Smell Occurs
96% of newly diagnosed people with Parkinsons will have lost some ability to smell. Little is confirmed about what causes hyposmia, the loss of smell. One popular theory in Parkinsons research has to do with the protein ‘alpha-synuclein’, which is found in clumps in all people with Parkinsons in the part of the brain affected by Parkinsons. This region of the brain is also very close to the Olfactory Bulb, which is responsible for our sense of smell.
A New Way To Detect Parkinsonsby Smell
Discovery of odorous markers for neurodegenerative disease
Scent has been used as a diagnostic tool by physicians for thousands of years. But smell tests are not common in modern medicinewhens the last time you were smelled by your doctor or received a batch of smell results back from the lab? Now, new research suggests that odors can be used to screen for Parkinsons disease, which currently is without a definitive diagnostic.
In the animal kingdom, scents emitted from a body often signal information about an individuals mental or physical state. For example, stressed rodents have been shown to excrete distinctive odors. Human body odors also have this function, emitting a wide array of odor and non-odor related chemicals called volatile organic compounds. These compounds are emitted from different areas of the human body and vary with age, diet, sex and possibly genetic background. Moreover, disease processes can influence our daily odor by changing these compounds.
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Parkinson’s Patients Often Experience Reduced Sensitivity To Smell
Losing one’s sense of smell can be an alarming symptom, and can have several explanations ranging from COVID to a cold. But experts say that few people realize that reduced sensitivity or loss of smell is also associated with Parkinson’s, which is more typically recognized for its motor symptoms.
“A reduced sensitivity to odors or a loss of smell is often an early symptom of Parkinson’s,” explains the American Parkinson Disease Association . “In fact, hyposmia and anosmia may be experienced months or even years before the traditional motor symptoms of Parkinson’s disease emerge,” their experts add.
Parkinson’s Smell Test Explained By Science
A Scottish woman who astonished doctors with her ability to detect Parkinson’s disease through smell has helped scientists find what causes the odour.
Researchers in Manchester said they had identified the molecules on the skin linked to the smell and hope it could lead to early detection.
The study was inspired by Joy Milne, a 68-year-old retired nurse from Perth.
She first noticed the “musky” smell on her husband Les, who was years later diagnosed with Parkinson’s disease.
Joy, who has worked with the University of Manchester on the research for three years, has been named in a paper being published in the journal ACS Central Science.
She has also been made an honorary lecturer at the university because of her efforts to help identify the telltale smell.
The research revealed that a number of compounds, particularly hippuric acid, eicosane, and octadecanal, were found in higher than usual concentrations on the skin of Parkinson’s patients.
They are contained in sebum – the oily secretion that coats everybody’s skin, but which is often produced in greater quantity by people with Parkinson’s, making them more likely to develop a skin complaint called seborrheic dermatitis.
“She could smell people who’ve got Parkinson’s disease.
“So we designed some experiments to mimic what Joy does, to use a mass spectrometer to do what Joy can do when she smells these things on people with Parkinson’s.”
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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.
Stooping Or Hunching Over
Are you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease .
What is normal?If you have pain from an injury or if you are sick, it might cause you to stand crookedly. Also, a problem with your bones can make you hunch over.
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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
An Ongoing Pursuit Looking For A Cause
Much of these conclusions were achieved by collecting the olfactory bulbs post-mortem, cutting thousands of ten-micrometer thin sections and staining them with fluorescently labeled antibodies.
The research has required painstaking attention to detail and collaboration on an international scale. The drive within our international team has been significant to see that this work was done to a high standard and that we used the generously gifted human brain tissue to gain the best results possible,said Associate Professor Curtis.
This research marks an advancement in the world of Parkinsons research, as much of the disease is still unknown. Learning how the body is affected can help researchers retrace itself to possibly find an origin of development, which could lead to a cure.
Devon Andre has been involved in the health and dietary supplement industry for a number of years. Devon has written extensively for Bel Marra Health. He has a Bachelor of Forensic Science from the University of Windsor, and went on to complete a Juris Doctor from the University of Pittsburgh. Devon is keenly aware of trends and new developments in the area of health and wellness. He embraces an active lifestyle combining diet, exercise and healthy choices. By working to inform readers of the options available to them, he hopes to improve their health and quality of life.
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Loss Of Smell Sense And Parkinson’s
Most people with Parkinsons have some loss of their sense of smell1. Although Parkinsons is generally thought of as a movement disorder, a number of non-motor features including loss of the sense of smell, constipation, depression and sleep disorders are frequently missed when doctors diagnose the condition. The loss of sense of taste is less frequent but it is also an underappreciated non-motor feature of Parkinsons disease.
Motor symptoms appear only when 50-60% of the dopamine-producing cells are lost in the substantia nigra area of the brain. Studies have shown that the pre-motor phase lasts around five years or more and it has been estimated that in some cases smell loss may occur up to 10 years before Parkinsons is diagnosed. It is during this pre-motor phase that early changes in the brain could potentially be detected if very early symptoms such as loss of the sense of smell were identified. It is therefore thought that screening, using reliable smell tests before typical motor symptoms are obvious, could help with the early detection of Parkinsons or identifying those at higher risk of developing the condition.