When one of the foremost online communities for neurological and brain conditions went offline without notice back in 2006, we stepped up to the plate and created NeuroTalk, now the premier support community online for these kinds of conditions.
One of the conditions we cover at NeuroTalk is Parkinson’s disease. After talking in the Parkinson’s support group for a few years, a group of patients with Parkinson’s decided that their stories weren’t being told very well by books available at the time. And that there really wasn’t a comprehensive guidebook for patients with Parkinson’s, their families, and their loved ones.
So this group of e-patients decided to create their own. The amazing result is called The Peripatetic Pursuit of Parkinson Disease and it is now available.
Don’t let the odd title fool you because, frankly, I’ve never seen a more amazing disease-specific book in my life. And while I’m a little biased (given that the group found one another on one of our communities; and I wrote the forward for it), I think if you pick up a copy — whether online or at your local library — you’ll agree.
The group of patients who coordinated, designed, wrote and edited the book is called the Parkinson’s Creative Collective. They are a non-profit and describe Parkinson’s this way:
Parkinson’s Disease (PD) is a progressive degenerative neurological disorder for which there is currently no cure.
Widely seen as a disease of old age, it can and does affect people of all ages. It is estimated that there are approximately 4,000,000 sufferers of Parkinson’s Disease worldwide, with estimates that this will rise to around 6,000,000 by 2030.
It is treated with dopamine replacement therapy, which initially can be very successful, but which over time may become as difficult to live with as the disease.
Here’s how they describe their journey:
In 2008 a group of online writers on Psych Central’s 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 people whose lives are touched by PD and looking for answers 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.
When I got my copy of the book, I was blown away by its comprehensive nature, its clear information, moving stories and international flavor from people with the actual disease. For a book about a terrible disease, it’s colorful, illustrated and easy to digest.
The chapters include: Parkinson basics and beyond; PD is more than a movement disorder; helping ourselves; quality of life; the difficult bits; PD activism; advocacy in action; going international; and where we are now. It includes a helpful glossary of all the technical and medical jargon thrown around with this disease.
If you or a loved one is suffering from Parkinson’s, I believe there is no better book to consider than The Peripatetic Pursuit of Parkinson Disease.