Parkinson's Disease Tulip


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Old 12-02-2013, 10:25 AM #1
Stand Tall Stand Tall is offline
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Default The Peripatetic Pursuit of Parkinson's Disease on MJFox Blog

https://www.michaeljfox.org/foundati...es-pd-resource
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lindylanka (12-03-2013), pegleg (12-02-2013), soccertese (12-02-2013), Tupelo3 (12-02-2013)

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Old 12-02-2013, 01:53 PM #2
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Default You found us!

Thank you, Stand Tall, for acknowledging our book mentioned in the Michael J. Fox Foundation blog.

Nan the cyclist also mentioned our book sometime back. I will search for her post later.

And at the World Parkinson Congress in Montreal in October of this year, I was taken aback to be sitting in the morning plenary session when epatient Dave was giving his presentation, and this slide came up:

http://epatientdave.com/2013/10/04/r...sons-congress/

I cried tears - real tears - when epatient Dave showed a page from our book with our friend, Paula Wittekind looking at her wrist watch. The heading was her infamous saying, "Time is not neutral for those who have Parkinson's." How true coming from one who didn't live to see our book in final print due to esophGeal cancer, and having battled Parkinson's for 25 years!

We hope that the word gets around this way, then we won't sound so narcissistic (I have never liked that word).

But more is coming, we just had a delay of 3 years, instead of the one year we thought it would take to write this book.

But wait until you see it! Lindey and many of you along with several more authors who post here, took your writings and turned this book into a work of art. As well as an invaluable resource.

Probably our most glowing review came from the Parkinson's Movement newsletter, "On the Move." Co-editor Jon Stamford, neurological researcher and himself a person with Parkinson's. Read it here:

http://www.cureparkinsons.org.uk/Sit...of-on-the-move

Oh, and did I tell you that Doc John (Grohol) wrote the forward?

More coming on this for certain!

After all, it's YOUR book.
Peggy
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Old 12-02-2013, 06:09 PM #3
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Wonderful Peggy! I gave the book out to every person who came to the YMCA training, trainers, trainees, and people with Parkinson's who gave testimonials as to the benefits of Pedaling for Parkinson's. It is just such a wonderful wonderful book! I still stand in astonishment that you could all do it and actually got it done. The director of the Northwest Parkinson's foundation came by my house especially to pick up two copies for their library. I was so pleased to see it on the MJFF website.
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Old 12-02-2013, 08:21 PM #4
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Default Thank YOU!

Nan
I really appreciate the way you used the book as a resource for those who know and teach the benefits of exercise.

I believe the book addresses about everything - except Obamacare! Lol
Peg
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Old 12-03-2013, 07:37 AM #5
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Thank you Peggy and everyone else who contributed to this wonderful book!
Jill
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Old 12-07-2013, 03:00 PM #6
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This book is a masterpiece; a huge accomplishment; unprecedented in publishing; it sets an entirely new standard for “medical self-help” books.

Thirteen editors and 130 authors, almost all with Parkinson Disease, working with minimal resources; have produced an encyclopedia of facts and a song-book of humanity. By a creative collective with only one thing in common – their lives have all been invaded by an enemy they cannot see.

Who, now, has the resources to get this book into every library, every medical school, and on the desk of every neuro, family doctor, nurse, care-giver… and to every patient at diagnosis; …a hundred thousand readers would mean 100,000 people fluent in the Parkinson language…

Who can do that? Get it out there. Do not let this be another lost opportunity. This book, by the patients, could be a game changer.
And Lord knows, this game needs some changes.

Read again “the fierce urgency of NOW” by Martin Luther King.
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Old 12-08-2013, 11:53 AM #7
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Default Goodness!

Wow, Bob. I sense that you are impressed. Lol

But you are correct about missing a once-in-your-life opportunity .

This book is set up so that no matter where you open the book, there's a lesson, a fact, a story, or an idea or challenge for the reader. There is no storyline ( that's for the next book), and every entry is written by an expert - whether it be Dr. Abe Lieberman director of the Muhammad Ali PD Center in Phoenix, AZ to a young onset PWP looking for how to deal with unemployment or raising kids.
We need help getting it out there, also. It would surprise you what we have been up against in getting mailing lists, or names.

Thank you for your endorsement. I'm sure it will eventually come, but there have not been any negative responses. Thanks, again for your words of encouragement
Peggy
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Old 12-08-2013, 02:49 PM #8
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Default The Book

How can I get a copy?
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Old 12-08-2013, 04:47 PM #9
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Quote:
Originally Posted by bluedahlia View Post
How can I get a copy?
Check out our website http://www.parkinsonscreativecollective.org/book.html

You can order from there

Girija
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Old 12-08-2013, 08:50 PM #10
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reading steves book, i am excited and proud of you guys. it is an awesome book with everything needed to be stated in it. i remember when we first talked about it, and POOF here it is! what a hard and commendable job. it is thee owners manual to pd. kudos!

ps... wheres my copy? lol
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