Parkinson’s takes an immeasurable toll on the quality of life of people living with the condition, their families, and their caregivers. It affects sufferers in a multitude of ways – from debilitating motor symptoms to mental deterioration to a general loss of independence over time. Simply put, it makes it difficult for people living with Parkinson’s to enjoy life.
Yet to me and my colleagues’ surprise, as we saw people living with Parkinson’s in our clinical work as neurologists, we began noticing that some people were telling a different – perhaps unexpected – story. Little by little, we discovered that some people – granted, not all – had found a new meaning in their Parkinson’s journey.
One person with Parkinson’s would tell us that they had become more spiritual since their diagnosis. Another, that they had found a new sense of purpose as they had become involved in a Parkinson’s-related community or organization. Patients spoke of a newly found focus in life, realizing what truly mattered to them, such as their work, their hobbies, or their relationships with family and friends. Yet another group of people living with Parkinson’s enjoyed greater creativity.
These isolated incidents led us to ask ourselves: could we have been missing an important aspect of people’s well-being? Can there be a silver lining to Parkinson’s? And can we as doctors and health care professionals to help people living with Parkinson’s adopts this positive outlook?
We set out to discover people’s views on how Parkinson’s might have in some way improved their lives. Through a structured online survey, we obtained feedback primarily from 123 people living with Parkinson’s, as well as from 9 neurologists and 8 spouses of relatives of people living with Parkinson’s. Of all respondents, 18% did not see any positive experiences related to Parkinson’s; I should caution that because of the way this survey was structured and deployed, this number may be higher, as those with only negative experiences may not have responded to the survey to begin with.
Yet 82% of respondents did see a silver lining. For instance, 65% of respondents spoke of an improved focus in life and of increased awareness; 41% had engaged in new activities or developed new interests and relationships; 35% mentioned improved relationships with family and friends, while a similar proportion of respondents described having developed better coping skills in the face of a neurodegenerative condition. Other positive aspects of Parkinson’s raised by survey-takers included increased creativity and artistic skills, devoting less time to work, maintaining a healthier lifestyle, and engaging with the Parkinson’s community.
We automatically expect people with a severe, debilitating condition such as Parkinson’s to be less able to find a silver lining in their condition, making these results seem counterintuitive. Yet research shows that the opposite may be true. Among other things, a concept known as the “disability paradox” suggests that people may perceive a sense of well-being and life satisfaction even in the face of health adversity. In other orders, we might say that a person’s quality of life is more than the sum of their physical abilities or disabilities – it relies also on their social, psychological, and spiritual well-being. Another possible explanation lies in the brain’s ability to change (also known as plasticity), enhancing certain functions to compensate for lost ones. This is seen, for example, in brain injury victims.
While these promising initial findings merit additional research, I propose that the whole Parkinson’s community – people living with Parkinson’s, families, and clinicians – should consider the following takeaways as they go through their own personal journeys:
- Acceptance is key. How well a person accepts their condition and their willingness to face the realities of living with Parkinson’s plays an important role in their ability to find a silver lining. Studies show that accepting a chronic illness is associated with reduced negative emotions, better physical and social functioning, and even adherence to treatment.
- Resilience is not the absence of adversity – it is the ability to cope with adversity. People living with Parkinson’s will be faced with ever-changing challenges as their condition progresses. We should focus on developing healthy mental coping strategies to prepare for what’s to come.
- How we define health matters. One definition of Positive Health, a term coined and developed in research, proposes to think of health as “the ability to adapt and to self-manage, in the face of social, physical and emotional challenges”. This lets us think even of a person living with Parkinson’s as someone who may enjoy Positive Health, all while living with a neurodegenerative disease.
- The disease does not define the person. A group of Parkinson’s people living with Parkinson’s are not “Parkinsonians” – they are people living with Parkinson’s. Each person may develop, or seek to develop, their own strategies and skills for coping with their condition. Doctors and other health care professionals who wish to implement a patient-centric approach should investigate these silver linings together with their patients as they work together not only to manage symptoms, but also to improve their quality of life in a holistic way and according to their individual wishes and priorities.
- Medication plays a role in revealing silver linings. Some medications for Parkinson’s may result in greater motivation, focus, or creativity.
As research continues to explore new ways to delay or even stop the progression of Parkinson’s Disease, the concept of silver linings in Parkinson’s may help people living with Parkinson’s, their families, and their health care providers to improve not only their symptoms, but also their quality of life as a whole. Patients and doctors should collaborate closely with mental health professionals and patients’ broader support network to ensure that “silver linings” play a central role in promoting people’s well-being and satisfaction with life, even when that means living acceptingly with Parkinson’s.
THIS ARTICLE DOES NOT PROVIDE MEDICAL ADVICE and is not a substitute for professional medical advice, diagnosis or treatment. If you or any other person has a medical concern, you should consult with your health care provider or seek other professional medical treatment immediately. Never disregard professional medical advice or delay in seeking it because of something that you have read on this website or in any linked article, blog or other materials.