Why would eleven people who reside in nine different US states and one in the UK spend the last four years working on a book about the disease they all have?
Simply, to help everyone learn what it's like to live, every day, with PD and to challenge the stereotypical images of PD -- all from the patients' perspective.
They created The Peripatetic Pursuit of Parkinson Disease -- an anthology of experiences where you meet more than 100 people from around the world who are passionate about living, as well as they realistically can, with PD. A few examples:
These people and many more share their lives to help you really understand PD.
The Peripatetic Pursuit of Parkinson Disease is:
A recently diagnosed woman described the book as her shield, enabling her to envision life beyond those fateful words: "You have Parkinson's." (By the way, her neurologist gave her the book!)
Reviewers describe the book:
"I've never seen a more amazing disease-specific book in my life." Dr. John Grohol
"...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...
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 Parkinsons, I believe there is no better book to consider than The Peripatetic Pursuit of Parkinson Disease."
Dr. John Grohol, founder & CEO of Psych Central, author, researcher and expert in mental health online. He sits on the editorial board of the journal Cyberpsychology, Behavior and Social Networking and is a founding board member and treasurer of the Society for Participatory Medicine.
"This is a masterpiece, pure and simple.
This is a book that will change your perspective on PD forever. " Jon Stamford, PhD
"This is a book which prompts original thought, challenges existing dogma, provokes responses, and empowers the reader. It is further even than that -- it's an aerobic workout for the brain!
The book is also accessible. Individual sections are short and punchy. Personal testimonies abound, providing intimacy and a human scale to the neurobiology. Everything is here -- from reactions to diagnosis through to the ethics of sham surgery in clinical trials. And all points in between.
You may not know it yet but this book is what you have been waiting for!"
Jon Stamford, PhD, PwP, co- founder of Parkinson's Movement, UK Autumn 2013 edition of "On the Move," Parkinson's Movement's newsletter