“Is there a silver lining to having Parkinson’s disease?” A researcher in the Netherlands uncovers a surprising answer.
When a patient asked neurologist Bastiaan Bloem if there was an upside to Parkinson’s disease, his snap response was “No.” But then, he took a moment to reflect. He realized that his patients, the people living with Parkinson’s disease, were the only ones capable of answering that question.
Bloem is the director of the Center of Expertise for Parkinson and Movement Disorders at Radboud University in the Netherlands. He and his team took to their social media channels with an open-ended question: “Is there a silver lining to having Parkinson’s disease?”
Bloem knew that his question would raise emotionally complex responses. His team was open to a negative outcome of the exploratory survey. In the video Bloem posted, he acknowledged: “We all wish the disease was gone.” But knowing a cure does not yet exist, have patients found a silver lining?
The team collected responses for fifteen days, and in the end, 82 percent of responses reported something that surprised him: that they had indeed found a silver lining while living with Parkinson’s.
Many respondents to the survey reported improved professional lives; in that they
“spent less time devoted to work and instead began to dedicate more time to meaningful activities outside of the professional world.” This reflects a sea change in the professional sphere writ large: between the great resignation, a renewed enthusiasm for unionizing, and even Beyonce’s song “Break My Soul,” people seem to be fighting against the idea that work defines them.
Other patients found a renewed intimacy with family or a fascinating creative drive. One eloquently noted, “I have learned the real value of life in all its beauty and complexity. … I have learned patience and how to accept the loss of the illusion that I can control all situations. But the most important lesson I have learned is the grace of gratitude for life itself and all I have been given.”
“We only tend to look at what people can no longer do,” Bloem told Being Patient in an interview. “That’s the change in healthcare that we need to embrace: Look at what people can do instead of what they cannot do, and silver linings is definitely part of that approach. It gives them action points, instead of [them] passively waiting for what happens next. They can pick this up and take charge and take control again.”
Some of the respondents to the survey were “outright upset” after being faced with the question of a possible silver lining of Parkinson’s disease. This is understandable, Bleom said: it is a challenging and incurable condition with no known cure.
“These negative answers are in many ways understandable,” he said. “These people indicated that they had never asked for Parkinson’s disease [PD], that the negative influence of this disease could be felt every day of their lives, and that all they wished for was a cure.” The plethora of reactions that the study-givers received is reflective of how every person’s experience with PD is unique.
Health was defined by the World Health Organization in 1948 as “a state of complete physical, mental, and social wellbeing.” Bloem and his team counter that this is outdated, unrealistic, and doesn’t adapt to the ways bodies change over time.
Machteld Huber of the Stichting Institute for Positive Health proposes a new definition of health: “the ability to adapt and to self-manage, in the face of social, physical and emotional challenges.”
Someone with Parkinson’s would no doubt be considered ‘sick’ by the WHO definition, but considering Huber’s new definition and the integration of silver linings, that person can attain health by their own standards.
Bloem indicates that he is beginning to write papers with patients instead of for patients. Involving the patient in researching and studying their diagnoses is empowering and an act of care.
Together, these approaches paint a portrait of a new direction for medicine: an integrative approach to long-term care that puts the patient first and takes an individualized focus. After all, his team understands that care for long-term conditions does not respond to a one-size-fits-all approach.
In the paper, Bloem cites the Japanese art of Kintsugi; wherein a broken object is repaired with an enhancement like gold leaf. He relates this art to the role acceptance has in integrating a diagnosis: “the degree of acceptance of the disease may be a key component of the ability to perceive a silver lining.”
This is only the beginning of research on the silver linings of long-term conditions and new definitions of health. In Parkinson’s and beyond, ideas like these can help expand our definition of what it means to be healthy.