The Peripatetic Pursuit of Parkinson Disease
 

Pegleg and others have been working on a book for several years. Last night I saw a copy right off the press. I cried with gratitude for the work and quality, passion and love that went into making this book: The Peripatetic Pursuit of Parkinson Disease, an illustrated anthology of experiences.

"For those with PD, it's a support group between two covers; and for everyone else, it's a window into the world of living with PD."

Order at: www.parkinsonscreativecollective.org

When I wrote the above post, I had not had a chance to read any of the book (except for the page that talks about climbing Kilimanjaro). Today I spent an hour starting from the front, reading every single word. The stories, the information, insight, the design and execution, are all as perfect as I could imagine. They are certainly as perfect as any book I've ever seen. If there was a five-star book on Parkinson's before this was printed, it is now a four-star book because this one is tops! Tonight I will spend another hour and then another and another until the book is finished. Then I will probably start over again. It is a must read for every PwP, every neurologist, every movement disorder specialist, everyone who cares.

While at the PDF meeting I suggested that a great project for PDF would be to write a book that summarized the Parkinson's experience in a way that PWP's and others who are interested would readily understand. That was before I saw the new book. The project is done.

thsnks
 

Hi Nan,
Thank you so much for your kind words and support. It was wonderful to see how well our book was received by the attendees of WPC. All I can say is that I am fortunate to be part of this wonderful group of people of PCC. It was Paula who initiated this project and brought us all together. I wish she was there with us in Montreal to see the book in its final form.
I am writing this from Montreal airport after chating with a fellow PwP who knew Paula. I miss her and wanted to share my feelings with you all.

Girija

Would also like to reiterate that the book project was very much shaped by Paula, who worked on it almost till the last, with great enthusiasm and insight, along with Bob (Bandido) of this forum, they were both a huge part of the project.

E-patient Dave of participatory medicine and TED talk fame brought Paula right into the centre of the congress when he showed a page she wrote, with her photo and her tagline, "Time is not Neutral for us......" highlighting the urgency for better treatments and a cure. It was a very moving moment.

I know many of you will have conversed here with Paula, she was a great connector of people, and I often see her posts when others look for information in our archives.

It was a great privilege to meet at last some of the people who are actually in the book and who are members of this forum.

Thank you,Nan
 

As I read your review of our book, chills covered me. You cannot believe how " magical"it has been in the creation of this book. And yet, there is so ,much more needing to follow. Everyone posting in this forum could write a book about their experiences with Parkinson's.

There was so much information just from these forums that we had no choice but to gather, collect, and creatively publish it. You would not be
Ie e how much did not get put into the book by shear need to cut it back.

You may recalLl Bandido, who posted here. He. Was a leader in us getting together. Bandido, Bob Cummings, passed away in a VA nursing home before we could finish, but he was instrumental in our receipt of our first grant. And then there was Paula. She is responsible for me joining the group, and she led the way as we blazed this trail. Paula, too, passed away fro, esophageal cancer just prior to the completion of the book.

This book is so much more than words or text, neatly filed under corresponding titles. It is a creation of art, love and a fabulous educational resource. We are awaiting final printing and requirements in our fulfillment contract. I feel so blessed to have been a part of this journey.
Peggy

The book is exceptional and I recommend everyone obtain a copy. So great to meet Lindy/ Girija/ Nan /Perry/ Tom and so many others that worked on this wonderful book. God bless you all....hope we shall meet again someday!

Now that the book is available, both through the Parkinson's Creative Collective website http://www.parkinsonscreativecollective.org and Amazon, we need help spreading the word. Would those of you savvy in the ways of marketing please help with suggestions or actions?

It's definitely under the tree for my loved ones.

JUST started reading it and all i can say is .... WOW!
 

WOW!
this is a massive book, over 2lbs?
please tell me there isn't a quiz after i finish reading it? :)
everyone with pd will find something in this book that will more than justify buying it. kudos to the authors and editors, it's beautifully illustrated, very easy to read, lots of interesting stories and biographies, an incredible amount of work must have gone into this book by people with pd.
it's "everything you wanted to know about pd but were afraid to ask" TIMES 10.
armed with this book you can better deal with healthcare providers, family members, coworkers, and have a better quality of life. and the best resource i've seen if you need the motivation to get involved in the "cause", an incredible amount of info on pd groups, individuals and examples on how to get involved which is more important than ever imho.

My comments from the other thread on this book
 

I know I'm repeating myself from the other thread, but for this book its worth it.

Wow, what a great way to spend a snowy weekend. Fireplace going, relaxing in my favorite chair, and reading a wonderful book written and edited by some incredibly talented PwP. Thank you so much for writing what will eventually become the "bible" for every newly diagnosed PD patient. The individual stories that go along with each detailed PD topic bring a prespective to this disease that probably has never been previously accomplished with any illness. Originally, I thought this was going to be a book written by PwP for PwP. However, after finishing it, I realized this book should be mandatory reading for every person associated with Parkinson's; patients, caregivers, family, doctors, therapists, etc.

Congratulations!! I'm honored to have a little bit of contact on this forum with some of the people involved in this fantastic accomplishment!

Gary

Great looking book! To spread the word I would suggest some social plug-ins on the book's web site to get the word out in the land of Face Book and Twitter. Example: The FB Like button is the quickest way for people to share content with their friends.

A single click on the Like button will 'like' pieces of content on the web and share them on Facebook. You can also display a Share button next to the Like button to let people add a personal message and customize who they share with.

Just Google Social Plugins and you'll see there are quite a few of them.
Your web site creator I'd say could make this happen.

So I just ordered the book from your website. I spent 30+ years in sales/marketing for a major computer company so would be happy to help market the book!

I did see it on Amazon for $27 with free (prime) shipping - a good deal. We should encourage people to write an Amazon review (you don't have to have bought the book from them) - so far there's only one review from "Dr. T"

promotion
 

https://www.michaeljfox.org/foundati...es-pd-resource

MJFF did a blog piece to promote the book it last month. I will look into mentioning it on our facebook page.

Debi

Happy New Year!

Just ordered my book!

Newbie doc/PwP
 

I'm a newbie to this forum. I saw the book at a workshop two days ago and just ordered it.

I have had PD for nearly 3 years and take no medication. Most of my symptoms disappeared after I started an intense program of running, weight lifting and yoga. I have created a website about "Sweating Out Parkinson's Disease. I intend to record podcasts on a regular basis. I hope my work will complement what I see here.

I am a retired physician, board certified in Psychiatry by the American Board of Psychiatry and Neurology. I'm happy to be here and hope to make a positive contribution.

Chris, welcome to NeuroTalk. I think you might be interested in the stories on the thread about Pedaling for Parkinson's. I had a similar experience to yours when I started high cadence cycling in 2009. Although I did not stop taking medicine, I was able to reduce my dosage by half and get rid of Azilect as well. Although I have recently had to increase my medication a little bit, I am still well below expectations for my age and duration of the disease. By the way, neat webpage. Did you make it yourself?

Welcome Chris!

I just received my book a few days ago. You will not be disappointed, it is an amazing collection of PD information.


Jill

I ordered my book last night. :-)
I read the preview on the website and thought it was amazing! Can't wait
to receive the book! Thank you in advance for all of the hard work that
went into this book!!!

If you have read a copy of this book, would you please take a few minutes and go to the Amazon website to write a review. It doesn't need to be long, just heartfelt. Thanks ever so much.

Please!
 

Ditto to what Nan said. Nan and I can't write a review since we are either on the board of directors or wrote some of the book. So we would appreciate your help.

:grouphug:

Peripatetic Pursuit of PD
 

I'm almost finished reading it. It led me to this website. It's really hard to read - very sad, but also empowering. I've summarized some parts and shared it with our North County Parkinsons support groups, especially the parts about gentle exercises. We're still struggling with the new life of living with PD disabilities. This book helps a lot, keeping things in perspective. There is a real world outside of the doctor's office, and we're trying to include as much as is reasonably comfortable in our lives. When I'm done reading the book, I will try to write about some of the many things I'm learning about how to maximize your lifestyle while your body says, "No."