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10-03-2013, 06:58 AM | #1 | ||
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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 |
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"Thanks for this!" says: | anagirl (10-03-2013), Aunt Bean (10-06-2013), Bogusia (10-04-2013), chrishageseth (01-09-2014), Drevy (10-03-2013), lab rat (10-08-2013), Lemonlime (01-09-2014), reverett123 (10-03-2013), ScottSuff (12-23-2013), shcg (10-04-2013), soccertese (10-03-2013), Stand Tall (10-03-2013), toyL (10-07-2013), Tupelo3 (10-05-2013) |
10-05-2013, 06:29 PM | #2 | ||
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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. |
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"Thanks for this!" says: | Bogusia (10-06-2013), chrishageseth (01-09-2014), girija (10-06-2013), Lemonlime (01-09-2014), soccertese (10-05-2013), Stand Tall (10-06-2013), Tupelo3 (10-05-2013) |
10-06-2013, 11:39 AM | #3 | ||
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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 Quote:
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"Thanks for this!" says: | Aunt Bean (10-06-2013), dilmar (10-06-2013), johnt (10-06-2013), Lemonlime (01-09-2014), Nan Cyclist (10-06-2013), soccertese (10-06-2013), Stand Tall (10-06-2013), Thelma (10-07-2013) |
10-07-2013, 12:23 PM | #4 | ||
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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. |
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10-10-2013, 10:35 AM | #5 | |||
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Senior Member
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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 |
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"Thanks for this!" says: | lab rat (10-11-2013), Lemonlime (01-09-2014), Nan Cyclist (10-10-2013), RLSmi (10-11-2013), Stand Tall (10-10-2013), Tupelo3 (10-10-2013) |
10-15-2013, 03:13 PM | #6 | |||
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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!
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"Thanks for this!" says: | Lemonlime (01-09-2014), Stand Tall (10-15-2013) |
01-09-2014, 02:28 PM | #7 | |||
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New Member
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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. |
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"Thanks for this!" says: | Aunt Bean (02-19-2014), crimsoncrew (01-14-2014), Lemonlime (01-09-2014), lurkingforacure (01-10-2014), MeAndPD (01-09-2014), pegleg (01-10-2014), shcg (01-10-2014), Stand Tall (01-10-2014) |
01-09-2014, 09:57 PM | #8 | ||
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Member
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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?
Last edited by Nan Cyclist; 01-09-2014 at 09:58 PM. Reason: typos |
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01-10-2014, 08:02 AM | #9 | ||
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Member
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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 |
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01-11-2014, 01:43 PM | #10 | ||
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Junior Member
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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!!! |
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