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The Peripatetic Pursuit of Parkinson Disease Paperback – October 9, 2013

4.8 out of 5 stars 42 customer reviews

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Editorial Reviews

Review

This is a masterpiece, pure and simple. This is a book that will change your perspective on PD forever. Jon Stamford, PhD
...Although there is much crossover, the book is divided into eight chapters Parkinson Basics and Beyond, Parkinson Is More Than a Movement Disorder, Helping Ourselves, Quality of Life, The Difficult Bits, PD Activism, Advocacy in Action and Going International .

If you're looking for a simple didactic, here's what you should do approach to Parkinson, then you should go elsewhere. If you want to be spoon fed, like a child, this book is not the answer. This is not a book for mental couch potatoes. This is a book for active enquiring minds who just happen to have PD.

So if you are a thinker and like your brain cells regularly tickled, this book is for you. If you want answers, they are here. But more importantly, so are questions and ideas. And if you want to really understand your PD, what it means to you as a person and to those around you, you are already knocking on the door.

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, co- founder of Parkinson s Movement,UK

--Review: On the Move, Newsletter, UK, Autumn 2013.

About the Author

The Parkinsons Creative Collective (PCC), the editor and publisher of this book, is a not-for-profit corporation. PCC's editors are all unpaid volunteers who live in nine U.S. states and one, the graphic designer, in the United Kingdom. Given the geographical distances, they worked and produced the book in frequent online sessions. Combined, they have over 190 years of experience with PD, including participating in many clinical trials, leading PD advocacy campaigns and working with support groups and others to improve living with the chronic disease known as PD.
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Product Details

  • Paperback: 320 pages
  • Publisher: The Parkinsons Creative Collective, Inc.; first edition (October 9, 2013)
  • Language: English
  • ISBN-10: 0989326608
  • ISBN-13: 978-0989326605
  • Product Dimensions: 8.5 x 8.4 x 0.8 inches
  • Shipping Weight: 2.2 pounds (View shipping rates and policies)
  • Average Customer Review: 4.8 out of 5 stars  See all reviews (42 customer reviews)
  • Amazon Best Sellers Rank: #551,841 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

Format: Paperback Verified Purchase
This book is published by a not-for-profit group of people with Parkinson’s called the Parkinsons Creative Collective and features stories from over 100 contributors all with PD, along with articles written by caregivers, family members, neurologists and MDs. Here’s two reasons why I really like this book:

1. Like many people, when I was first diagnosed with Parkinson’s it was totally unexpected. I knew no one who had Parkinson’s disease and I knew very little about it. I thought I’d had either a small stroke or some issues with my muscle movement. But the neurologist told me he was 110% certain I had Parkinson’s disease! After I heard him say that my mind went blank and he continued to tell me how he’d write a prescription for some drugs and to come back and see him in six months. Oh and by the way he thought there were some support groups in the local area that I could probably find out about. It took me about a year of doing Internet research and talking to other people to finally get a handle on what Parkinson’s disease was all about. How I wish I’d had this book 3 years ago. It does a great job of answering many of the questions I had immediately after my diagnosis and provides great insightful comments from many of the contributors who have experienced the same issues that I have. Many of the stories in this book are very personal and there are also a number of good articles written by MDs, neurologists and scientists. In other words there’s something for everyone.

2. The second reason I like this book is that it is a great resource for family members and caregivers and gives them a valuable insight into what it’s like to experience PD.
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Format: Paperback
The Peripatetic Pursuit of Parkinson Disease Is the Premier Primer Providing Parkinsonians a Positive Perspective and Promotion for Progressing from Passive Patients to Partners in Participatory medicine; that is, if you can get past the alliterative title. As Katherine Huseman, one of more than 100 contributing writers, reminds us, “laughter...feels great.” (p97.) Indeed, and a glance through the 319 color-filled pages reveals that a multitude of her cowriters agree. I didn’t count the number of countries represented but it’s clear that the book was truly an international effort. In addition to the perspective, subtle humor, colorful package and international flavor, another unusual and welcome quality of the book is that the writers are, overwhelmingly, people with Parkinson’s. Since the book is an anthology of short writings –some a paragraph or two, few longer than a couple of pages- you could treat it as a coffee table book. Open it to any page and start reading. No matter if you are a Parkinsonian, a Care-Partner, a relative, friend, or loved one; just an interested party; or a medical professional; you will probably gain new knowledge and understanding about PD , and you will likely find something here to make you laugh, smile, or cry. Probably, all of the above.
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I am a recently diagnosed PWP (person with Parkinson's). This is a great book as everything in it is written by people with Parkinson's. Even the medical info is written by doctors with Parkinson's.

It is NOT a quick reference guide with easy to find facts. It is the compilation of the stories of many people with Parkinson's that represent the wide variety of way that Parkinson's presents and how it impacts lives.
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Format: Paperback
Whether you are a newly diagnosed person with Parkinson's (PwP), a long-time-diagnosed trooper, a caregiver, family member, friend, researcher or just someone who wants to understand the inner workings of an often misunderstood disease, this book is for you! Packed with the personal, but topic-oriented stories of over 150 PwP's, it includes understandable articles which outline the basics of our latest information on the many symptoms of Parkinson's disease (PD). It covers diagnosis, symptoms, treatment issues, deep brain stimulation, medication's pluses and minuses, tips for dealing with all facits of PD and about everything experienced from both the PwP's perspective and those who love and care for them. By far, the most successful, and more importantly useful informational publications I have read on PD.
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I bought this book immediately. As a young onset Parkinson's patient, (and newlywed), I'm far from willing to give up my active lifestyle.

I found this book so helpful, so encouraging. It's the first positive book I've read since my diagnosis.

In fact, when I showed it my Neurologist, a Parkinson's specialist, she thought it was so inviting when I brought it in at an appointment, she asked if she could have it!!

Thrilled my physician was so interested, I immediately ordered another one.

I genuinely think this is a book worth giving to ALL OUR COLLECTIVE NEUROLOGISTS!

If they're not receptive, I would suggest finding a new PD Specialist.

Any neurologist unwilling to learn something new and encouraging is NOT for you.

Unless you're ready to give up.....an unacceptable choice.

I highly suggest everyone buy 2, one for yourself and one for doctor.
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