The dark side of parkinson's - a necessary change of perspective

A Google search for "Parkinson's", "symptoms", "video" and "advice" turns up almost 4 million examples. The overwhelming majority of these come from practicing physicians and/or the pharmaceutical industry.

Many of them are entrepreneurial in nature and often express views influenced by commercial interests. Essentially, these are films made by doctors for other doctors. Often the production value is relatively small, and many are little more than a man in a lab coat talking to his slides.

In many cases, patients are involved to some degree, particularly in answering questions or otherwise as largely passive participants.

The dark side of Parkinson's disease is different.

The dark side of Parkinson's was created by three people with Parkinson's who wanted to do something different.

Jon Stamford and Anders Leines met in 2010 while filming a webinar and series of interviews with the world's leading scientists. Jon Stamford is a retired neuroscientist and Anders Leines is an award-winning television filmmaker.

The idea for “The Dark Side of Parkinson's” came to John and Anders while attending a concert by the Manchester jazz band Go Go Penguin. A strange start perhaps, but the start of a fruitful discussion on how to present issues. Both felt Parkinson's is best taught through personal experience rather than dry, detached reading. Both felt there was room for very personal introductions to some of the more uncomfortable aspects of Parkinson's disease.

They also felt that the films should be visually very impressive. They didn't want to use slides or men in lab coats. They felt this was a barrier for patients and wanted a more confidential, intimate and understanding way of presenting.

"Once we started talking about the 'dark' side of Parkinson's, the presentation format became obvious." The films had to be dark in the truest sense of the word and almost oppressive in a way. They had to be different enough that they would make people want to know more about them. The visual presence of the films is as striking as the content.

As for the content, the idea was to present information in the form of personal experiences, anecdotes from our own experiences and those of friends. The films do not teach the viewer. Rather, they are stylistically like conversations. The factual content is there, but presented in a way that the viewer can revisit later.

Jürgen Zender, publisher of the Parkinson Journal, then joined in 2019, just as he was diagnosed with Parkinson's and was scouring the internet for help. He quickly made the acquaintance of Anders M. Leines and translated his experiences with Parkinson's into German (https://youtu.be/NL45Mz4KkpU) At the same time, the foundation stone was laid for today's Parkinson's Journal, which, with its thousands of readers, has become the ultimate online information medium about Parkinson's.
Jon and Anders entrusted him with the translation into German, whereby not only the dubbing voice of Jürgen Zender, but also the new sound and music mix of the series in German gives it its very own character.

These films are, as Jon, Anders and Jürgen hope, the first attempts in this direction. It is to be hoped that more films will emerge from these beginnings. Welcome to the dark side.

Jon Stamford, Anders Leines and Jurgen Zender, June 2023