About the NeuroWriters

In 2008 a group of online writers on Psych Centrals Neurotalk Parkinson's Disease board decided to take their advocacy further and extend the collective knowledge of people living with Parkinson Disease to a wider audience. This was in part inspired by a desire to move the shared experience, and expertise in their condition, to a place where this knowledge could be brought to t people whose lives are touched by PD and looking for andswers to their questions, and in part a response to knowing that there is a lack of awareness, even among people who are engaged in medicine, research, fundraising, care industries, and elsewhere, about Parkinson disease.

After some discussion on Neurotalk board it became clear that a book in a way already existed, within the posts of forum participants, and what was needed was to extract the essence of the information that people with Parkinson's have been sharing for many years. As the forum originated with the earlier Braintalk Communities, and even further back in time, it was decided to include the history of online PD advocacy, and to tell the story of how it moved from online support in the early days of the internet, to the many and very widespread patient groups that exist internationally, in the virtual world and as very real advocacy groups, and individual activists.

This process of advocacy is still developing, and the patient understanding of the condition is still growing and influencing the way that PD is seen.

in truth patients are pursuing a better understanding of Parkinson's, in the hope of an eventual solution for all people with Parkinson's, whoever, and wherever they are.

NeuroWriters was formed, incorporated as Parkinsons Creative Collective, and have been working together since mid 2009 to bring The Peripatetic Pursuit of Parkinson's Disease to everyone who needs to know more about the condition.

 

bookcover

This book is about the Alice in Wonderland experience of discovering what it means to have Parkinson's, how patients came together to find out more about their condition, and the things they discovered on that journey.

It tells how they became activists, and developed their advocacy not just to patients but to health professionals and research bodies. They insist that this journey it not over yet, that patients deserve a place at the table when decision are made on their behalf.

An early preview version of the book was available for attendees of the World Parkinson Congress in September 2010 in Glasgow, Scotland, and at PAN events in 2011. The positive response we got at these and other events made it possible to bring the book to a wider audience.

 

pages from book

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