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The Evolution of a Labor of Love
Three years ago a labor of love began. I was approached by the Michael J. Fox Foundation to collaborate on a series of communication guides for Parkinson’s patients and their caregivers.
Much had been written about managing symptoms. Yet, because of the complexities around confronting, breaking down, and offering guidance around these difficult conversations, few resources existed for discussing Parkinson’s in the workplace or within families.
How We Thought About
Communicating New Information
First, we decided on a “guide” format, as it offers the clearest way to communicate information. Revealing emotionally charged information is hard, so the guides would be designed to offer clear actions and planning tools in an easy-to-digest format.
Then we examined the information gaps. We found little guidance for 1) disclosing a Parkinson’s diagnosis in the workplace, and no practical advice for 2) managing workplace relationships after a diagnosis. These became the topics for the first two Guides.
We agreed on the Guide’s primary goal: to the degree possible, take away or minimize the uncertainty and stress around communicating a diagnosis and managing relationships after a disclosure.
The reaction was, and continues to be, very positive. We heard from many patients and caregivers and began to receive suggestions for other topics, opening up possibilities for resource guides beyond workplace topics. This led us to consider new paths and a third Guide.
Of the many suggestions we debated, the idea that rose to the top was communicating with children and teens. Helping a child process what they are seeing and experiencing when a family member has received a diagnosis is beyond my area of professional expertise. We quickly enlisted the help of four highly trained psychologists and therapists. Their contributions to Guide 3, below, were invaluable.
Some unexpected things began happening after the first guide was published.
We discovered that the information and advice we presented is universal to anyone who has received a diagnosis or is caring for someone with an illness or disability. We began receiving requests from people outside the Parkinson’s community. Corporations, affinity groups, and nonprofits working with populations/caregivers who have a disability or chronic illness have used the guides to support their members.
Though always challenging and humbling, learning about the issues faced by those affected by Parkinson’s and other diagnoses has also been an inspiring experience. It continues to be an honor to collaborate with extraordinary patients and caregivers who freely offer their stories and experiences. And, I cannot say enough about the clinicians and the remarkable staff at MJFF. These are people whose decades of professional expertise is matched only by their compassion.
If you know anyone who has recently received or is managing a diagnosis, living or caring for someone with a disability, and you believe that the information in any of the guides can help, please share freely.
There will be a 4th Guide published in 2019. Planning begins in October. We’d love to hear your suggestions for topics.