The Peripatetic Pursuit of Parkinson Disease

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. The other week my brother came to visit for a few days and while he knows I have PD and we’ve openly talked about it I try not to bore him each time he visits with the same old details of how tedious it is for me to put on clothes or get up out of a chair or type on a computer keyboard. So I had this book out on a coffee table and I notice him reading a few pages here and there. The next day he tells me he’s ordered a copy of the book and when I asked him why he says it’s the first book he’s read that was written by people who had a direct experience of Parkinson’s and told a very compelling story of frustration, hope and future possibilities. This is why I think the book is also very useful for family members, caregivers and people in the medical profession.Oh,and by the way this book is frequently bought with a box of tissues! Some of the stories are deeply personal and very emotional and sadly several of the contributors are no longer with us. Finally the book is beautifully produced with over 320 pages in full color and of the many books I have purchased about Parkinson’s disease this is by far the best one yet!

This is a portable support group. My husband has had PD for 5-6 years (that we know of) and I've learned a lot in just the first 50 pages of this book. So if you or yours have PD, buy this book. It will do more than any neurologist can to answer a ton of questions or to raise questions you've never thought about. In fact, at his last appointment I brought up something that I had read in the book, namely a question about the source of his tremors. Is it all Parkinson's or does sinemet contribute? Apparently, from an article in the book I gather this is not a settled matter. The neuro looked at the ceiling to keep from blowing up and finally hollered "It's Parkinson's!!!!" ("Dummy" was the implied rest of the sentence.) I wasn't impressed, intimidated or dissuaded: I told my husband to get a different neurologist.

I was advised that this was the best book on Parkinsons by the person who runs our Parkinsons exercise and support groups. Having read three books on Parkinsons now... I have to agree with her. Written as a collaborative effort by people who are dealing as PwP's it had enormous credibility for me and lifted my out of my ignorance and serious depression. The one thing that I have found most supportive over the few months since I was diagnosed is not the "encouraging words" and sympathy and love I have received from friends and family.... it is association (face to face with others who have Parkinsons) and reading about people dealing effectively and courageously with Parkinsons. This book really does this. Simply put, everyone who has Parkinsons... or who is in a supporting role... should read this. Yes, some of it is painful, some of it connects you to all sorts of ideas and resources to tap.. but you come away changed (and strengthened).

This is the best collection of Parkinson's Disease information that I have read. It describes the disease in ways that no other publicaion has done. And it is full of good information for caretakers of PD atients and for PD patients. I highly reccommend this book for anyone who has a person in their life who has Parkinson's disease and I highly reccommend this bok fo anyone who is diagnosed with Paarkison's disease and anyone who hs to be the caretaker.

Best book on Parkinsons I've read. As a person with Parkinsons, I can relate to the stories and worries and advice given here. It is a little dense reading -- there's a lot here to absorb so don't try to gulp it all down at once. Sip it slowly and thoughtfully.

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.

There's a lot of valuable information in this book, but due to the small print and busyness, a little difficult to read. It's a good source for people who are suffering from Parkinson's and their caregivers.

This book has to be taken in small doses if you are a PwP. Parts of it really hit me in a very personal way -- nothing "academic" when it is telling my story!