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The Sunday Read: ‘The Woman Who Could Smell Parkinson’s’

By The New York Times

Joy Milne, a woman with an extraordinary sense of smell, discovered she could detect a distinct odor from her husband years before his Parkinson's diagnosis. This led researchers to validate her ability and identify molecular changes in skin secretions as potential early biomarkers for Parkinson's disease, even before motor symptoms appear.

In this episode of The Daily, the unique story behind Joy Milne's discovery is explored, along with the scientific efforts to develop a simple, non-invasive test that could enable earlier interventions for Parkinson's. While promising, experts grapple with the ethical implications of disclosing one's risk for a neurodegenerative condition before symptoms arise.

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The Sunday Read: ‘The Woman Who Could Smell Parkinson’s’

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The Sunday Read: ‘The Woman Who Could Smell Parkinson’s’

1-Page Summary

Joy Milne's Extraordinary Olfactory Abilities and Parkinson's Disease

Joy Milne was born with an incredibly acute sense of smell that enabled her to detect an unusual musky odor on her husband, Les, years before he was diagnosed with Parkinson's disease. According to Joy, this scent signified a fundamental shift in his identity. Her ability to identify Parkinson's in others by its distinct odor alone has profound implications for early diagnosis and understanding the condition.

Joy's Advocacy and Personal Experience

Joy felt that the medical community often dismissed or misunderstood the psychological and behavioral symptoms of Parkinson's. Her advocacy stemmed from the challenges of caring for Les, who faced misdiagnoses and lack of awareness about the disease's full spectrum of symptoms beyond movement issues. Joy believes an earlier diagnosis could have mitigated much of the pain they endured and suggests her late mother-in-law's psychiatric issues were likely undiagnosed Parkinson's manifestations.

Scientific Discovery of Parkinson's Molecular Signatures

Initially met with skepticism, Joy's claims about detecting Parkinson's through smell led researchers at the University of Edinburgh to validate her abilities. Further studies revealed that the distinctive odor seemed to originate from changes in sebum, a lipid-rich skin secretion. Chemical analysis identified higher concentrations of icosane, octadecanol, and hypuric acid in Parkinson's patients' sebum, indicating disruptions in cellular pathways. These compounds were also found in individuals with pre-manifest Parkinson's, suggesting their potential as early biomarkers.

Developing an Early Diagnostic Test

Inspired by Joy Milne's discovery, researchers envision a simple, non-invasive swab test to detect these molecular signatures, enabling earlier interventions to prevent or delay Parkinson's progression before motor symptoms appear. However, Petkoff notes the ethical dilemma of informing asymptomatic individuals that they may develop a devastating neurodegenerative disease. Experts grapple with balancing the benefits of early detection against the psychological burden and social implications, emphasizing the need for longitudinal studies and informed consent.

1-Page Summary

Additional Materials

Counterarguments

  • The reliability of an individual's olfactory abilities for medical diagnosis is not yet a standardized or widely accepted method.
  • The psychological impact of knowing one has a biomarker for a disease without a cure could be detrimental to some individuals' mental health.
  • Ethical considerations must be addressed regarding how early diagnosis might affect insurance, employment, and social stigma for those identified as at risk for Parkinson's.
  • The specificity and sensitivity of the proposed swab test need to be rigorously validated in large-scale studies to ensure it does not produce a significant number of false positives or negatives.
  • There may be other conditions or factors that can cause similar changes in sebum composition, which could complicate the use of these biomarkers for Parkinson's disease specifically.
  • The cost-effectiveness and accessibility of developing and implementing such a diagnostic test on a wide scale have not been fully explored.
  • The potential psychological and behavioral symptoms of Parkinson's that Joy advocates for may have multifactorial causes and might not be directly attributable to Parkinson's in all cases.
  • The assumption that early detection would necessarily lead to better outcomes for Parkinson's patients is optimistic and needs to be substantiated with evidence from long-term outcomes studies.
  • The idea of a fundamental shift in identity due to a disease may be challenged by those who advocate for a view of identity that encompasses the ability to adapt and change in the face of illness.

Actionables

  • You can raise awareness about the non-motor symptoms of Parkinson's by sharing information on social media. Create posts that highlight the psychological and behavioral aspects of the disease, which are often overshadowed by the physical symptoms. Use hashtags like #BeyondTheTremor to engage a broader audience and provide resources for further reading.
  • Start a conversation with your family about the importance of early detection for conditions like Parkinson's. Use family gatherings as an opportunity to discuss the potential benefits of being informed about one's health risks, and encourage open dialogue about the ethical considerations of knowing one's predisposition to certain diseases.
  • Encourage friends and family to participate in scent detection games to increase olfactory awareness. Organize fun activities where participants try to identify different scents blindfolded, which can lead to discussions about the role of smell in health and how changes in one's sense of smell could be indicative of underlying health issues.

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The Sunday Read: ‘The Woman Who Could Smell Parkinson’s’

Joy Milne's extraordinary sense of smell and her personal experience with Parkinson's disease

Joy Milne's unique olfactory abilities, deeply shaped by her family history and personal experiences, hold the key to her profound connection with Parkinson's disease—a condition she detected in her husband years before formal diagnosis.

Joy Milne's unique olfactory abilities were deeply shaped by her family history and relationship

Joy Milne possesses an acute sense of smell, which has necessitated significant adjustments in her life to avoid overpowering scents. She inherited this heightened sense of smell from her maternal lineage, particularly her grandmother, a fellow hyperosmic. As a child, her grandmother encouraged her to hone her olfactory abilities, setting the stage for a gift that would later emerge as instrumental in identifying her husband's serious health condition.

Joy adored her husband Les's natural smell, which was a comforting mix of salt, musk, and leather from the soap he used. But one evening, Joy detected a new and persistent musty scent on Les, which signaled a fundamental shift in his identity for her. This unsettling change was a point of alienation, marking the beginning of what would later be understood as a connection to Parkinson's disease.

Joy's heightened sense of smell became an integral part of her identity and relationship with her husband Les, who she could detect had Parkinson's disease years before his formal diagnosis

Joy's extraordinary sense of smell became inseparable from her relationship with Les, and ultimately her life's journey with Parkinson's disease. She noticed that everyone she met with Parkinson's had the same peculiar, musty odor that she had detected on her husband years before he was diagnosed. Her ability to identify Parkinson's by scent alone has tremendous implications for early diagnosis and understanding of the disease.

Joy's personal experience with her husband's battle with Parkinson's disease deeply influenced her perspective on the medical community's approach to the condition

Joy Milne lives alone after Les's death in 2015 from Parkinson's. Her spice collection, representative of her love for intense scents, perhaps offers some solace. However, her experiences have left her with a heavy heart, especially toward the medical community's response to Parkinson's disease.

Joy felt the psychological and behavioral symptoms of Parkinson's were often dismissed or misunderstood by the medical establishment

She experienced frustration in communicating with medical professionals who often dismissed the psychological symptoms associated with Parkinson's, symptoms she found more challenging to manage than the physical ones. Les's own struggle with dementia and sexual compulsion highlighted the complexity of the disease that extended far beyond movement issues—an understanding that Joy felt was lacking among medical practitioners.

Joy's advocacy for greater awareness and understanding of the full spectrum of Parkinson's symptoms was driven by the challenges she faced caring for her husband

Her insistence on recognizing th ...

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Joy Milne's extraordinary sense of smell and her personal experience with Parkinson's disease

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Actionables

  • You can enhance your observational skills by keeping a scent diary to become more attuned to subtle changes in your environment and the people around you. Start by noting down distinct smells you encounter daily and any changes you observe in the scent of your surroundings or loved ones. This practice can sharpen your senses and may help you notice unusual changes that could be indicative of health issues.
  • Encourage open conversations with family and friends about the full range of health symptoms they experience. Create a safe space where they can share symptoms that are often overlooked, like subtle behavioral changes or sensory shifts. This can foster a more inclusive approach to health and well-being within your personal circle and potentially aid in the early detection of conditions like Parkinson's.
  • Volunteer for research studies or initiatives that aim to improve d ...

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The Sunday Read: ‘The Woman Who Could Smell Parkinson’s’

The scientific discovery and research into the chemical signatures of Parkinson's disease in sebum

The unique ability of Joy Milne to smell Parkinson's disease has led to remarkable scientific studies that could revolutionize early diagnosis.

Initial skepticism towards Joy's claims about being able to smell Parkinson's disease eventually gave way to scientific investigation and validation

Joy Milne's realization that Parkinson's disease might have a detectable odor came when she attended a meeting of local Parkinson's patients and noticed they all shared a distinct smell, similar to the one her husband had had for years. Despite initial skepticism, her claims led to scientific investigation.

Researchers at the University of Edinburgh conducted a small pilot study that confirmed Joy's ability to accurately identify Parkinson's patients by smell

Researchers conducted tests with Joy that showed she could unequivocally distinguish Parkinson's patients from those without the disease based on smell alone. Joy participated in a small pilot study in Edinburgh, where she successfully identified Parkinson's patients by their scent, which led to further funding for a full study on Joy's olfactory ability and the chemical components of Parkinson's.

The researchers determined that the distinctive Parkinson's odor was likely originating from changes in the patients' sebum, a lipid-rich skin secretion

After media attention, more people came forward reporting they too could smell Parkinson's. The odor, described as musty, oily, or like sour milk, had been noticed by individuals before a formal medical diagnosis. Nurses at NHS clinics in England and Scotland collected sebum samples from Parkinson's patients and sent them to the researchers for Joy to smell and chemical analysis. The odor that Joy detected concentrated at the neckline; researchers speculated that it came from sebum, a substance not previously considered for disease detection.

Deeper chemical analysis of Parkinson's sebum revealed specific molecular signatures associated with the disease

Further research included participants who wore t-shirts for scent collection. Joy could accurately identify Parkinson's patients and their sample counterparts. There was one mislabeled control t-shirt that later turned out to belong to a person who was diagnosed with Parkin ...

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The scientific discovery and research into the chemical signatures of Parkinson's disease in sebum

Additional Materials

Clarifications

  • Sebum is an oily, waxy substance produced by the skin's sebaceous glands. In the context of disease detection, changes in the composition of sebum can potentially produce distinct odors that may be associated with certain medical conditions. In the case of Parkinson's disease, researchers found that specific chemical compounds in sebum were present in higher concentrations in patients, suggesting a potential link between these compounds and the disease. Joy Milne's ability to detect these unique odors in Parkinson's patients' sebum played a crucial role in identifying potential molecular signatures for early disease detection.
  • Gas Chromatography-Mass Spectrometry (GC-MS) is a powerful analytical technique used to identify and quantify compounds in a sample. It separates complex mixtures into individual components for analysis. An olfactory port is a device that allows a human assessor, like Joy Milne in this case, to directly smell the compounds eluting from the GC-MS system. This direct olfactory assessment can help correlate specific smells with particular compounds, aiding in the identification of chemical signatures associated with Parkinson's diseas ...

Counterarguments

  • The sample size in the initial studies may have been too small to conclusively validate Joy Milne's ability, and larger, more diverse cohorts are needed for robust scientific confirmation.
  • The identification of specific compounds may not be unique to Parkinson's disease and could be present in other conditions, potentially leading to false positives.
  • The reliance on an individual's olfactory ability is not a standardized diagnostic tool and may not be replicable across different populations or examiners.
  • The chemical analysis of sebum for diagnostic purposes is still in its infancy, and more research is needed to understand the specificity and sensitivity of these biomarkers.
  • The findings from the research based on Joy Milne's ability may not translate into a widely applicable diagnostic test due to individual variations in olfactory perception.
  • The presence of the identified compounds in IRBD sebum suggests a potential for early detection, but it is not yet clear how early these indicators can be detected before clinical symptoms manifest.
  • The link between the identified compounds and the disrupted cellular pathways ...

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The Sunday Read: ‘The Woman Who Could Smell Parkinson’s’

The potential development of an early diagnostic test for Parkinson's and the associated ethical considerations

Researchers are currently developing an early diagnostic test for Parkinson's disease through the understanding of molecular signatures in sebum. This non-invasive test could screen for the disease before motor symptoms appear, presenting a "holy grail" for Parkinson's research.

The discovery of the Parkinson's-associated chemical signature in sebum has spurred efforts to develop a novel, non-invasive early diagnostic test

Inspired by reports, including Joy Milne's ability to smell Parkinson's, researchers are considering the use of sebum tests for early detection of Parkinson's disease. A simple swab test could enable earlier interventions that might prevent or delay the disease's progression. The company Seebomics is looking to commercialize a sebum-based test, and such early-stage identification methods could help prevent or delay classical symptoms of Parkinson's since the disease is typically diagnosed based on its characteristic motor symptoms after significant neuron damage has occurred.

Researchers envision a simple swab test that could screen for early signs of Parkinson's even before the emergence of motor symptoms

Robert Petkoff discusses the future potential of a sebum swab suggesting Parkinson's in a patient with no outward signs. Early treatment with neuroprotective drugs following more invasive testing could result from it. This novel diagnostic approach would be key to making significant strides in addressing the disease.

Such a test could enable earlier interventions and potentially prevent or delay the progression of the disease

The Michael J. Fox Foundation for Parkinson's Research has invested significantly in the search for such a biomarker. Unfortunately, one potential test, involving a spinal tap, has limited utility due to its invasive nature. Sebum analysis could, alternatively, be part of a suite of tests to create a risk profile for Parkinson's.

However, the development of such a predictive test raises complex ethical questions

The excitement for a potential diagnostic test is tempered by the ethical considerations it raises.

There are concerns about informing asymptomatic individuals that they are likely to develop a devastating neurodegenerative disease in the ...

Here’s what you’ll find in our full summary

Registered users get access to the Full Podcast Summary and Additional Materials. It’s easy and free!
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The potential development of an early diagnostic test for Parkinson's and the associated ethical considerations

Additional Materials

Counterarguments

  • The reliability of sebum analysis for Parkinson's diagnosis is not yet proven; false positives or negatives could lead to unnecessary anxiety or a false sense of security.
  • Commercialization of the test by Seebomics may lead to conflicts of interest, potentially influencing the research outcomes or accessibility of the test.
  • Early interventions based on a sebum test are speculative; there is no guarantee that current neuroprotective drugs can prevent or delay Parkinson's progression.
  • The psychological impact of early diagnosis on individuals and their families may outweigh the potential benefits, especially if there are no effective treatments available.
  • The investment by the Michael J. Fox Foundation, while significant, does not guarantee the discovery of a viable biomarker or the effectiveness of such a test.
  • Ethical considerations around informing asymptomatic individuals of their risk may not be fully addressable by current informed consent protocols, which could lead to ethical dilemmas in practice.
  • The predictive power of early diagnostic tests may be overe ...

Actionables

  • You can start a personal health journal to track any changes in your well-being that might be early indicators of conditions like Parkinson's. Document daily observations about your physical state, mood, and any unusual symptoms, even if they seem minor. This habit can help you become more attuned to your body and potentially spot early signs of health issues that could benefit from early intervention.
  • Engage in regular discussions with family members about your family's medical history, including any neurological conditions like Parkinson's. This knowledge can inform your decisions about when to seek medical advice or screening tests, as some conditions have genetic components that may increase your risk.
  • Consider participating in research studies or clinical trial ...

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