This blog was created and designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel mineral metabolic disorder. I have two variants of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetworkinc.com .
Tuesday, February 28, 2017
Wednesday, February 8, 2017
Best Way to Share Awareness of Periodic Paralysis With Others
Hello All,
Yesterday was Periodic Paralysis World Awareness Day. One of the best ways we can make people and doctors aware of the various forms of Periodic Paralysis is to share our latest book with them. I wrote it for this very reason. The first two books were written to help you understand PP and manage your symptoms...to "be the best you can be" and to be able to get a diagnosis. The 'Bill of Rights' book is to help to empower you as you deal with the medical professionals in your life...to know your rights as they try to take them away from you or intimidate you. The fourth and final book "What Is Periodic Paralysis?: A Book Like No Other" was written to share with all of those people in your life who need to know about and understand PP and how it affects you. It was designed to be personalized by you...there are places for you to fill in your own information if you want to share it...how it affects you personally (This is also the way the Workbook was designed).
"What Is Periodic Paralysis?: A Book Like No Other" can be purchased at CreateSpace:
https://www.createspace.com/5809100
or
Amazon.com:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1
Proceeds from the book...a few dollars each...goes back into our organization....to help run our organization and to purchase books for those who cannot afford them or passing them along to doctors, etc...for awareness and education.
Until Later....
Yesterday was Periodic Paralysis World Awareness Day. One of the best ways we can make people and doctors aware of the various forms of Periodic Paralysis is to share our latest book with them. I wrote it for this very reason. The first two books were written to help you understand PP and manage your symptoms...to "be the best you can be" and to be able to get a diagnosis. The 'Bill of Rights' book is to help to empower you as you deal with the medical professionals in your life...to know your rights as they try to take them away from you or intimidate you. The fourth and final book "What Is Periodic Paralysis?: A Book Like No Other" was written to share with all of those people in your life who need to know about and understand PP and how it affects you. It was designed to be personalized by you...there are places for you to fill in your own information if you want to share it...how it affects you personally (This is also the way the Workbook was designed).
"What Is Periodic Paralysis?: A Book Like No Other" can be purchased at CreateSpace:
https://www.createspace.com/5809100
or
Amazon.com:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1
Proceeds from the book...a few dollars each...goes back into our organization....to help run our organization and to purchase books for those who cannot afford them or passing them along to doctors, etc...for awareness and education.
Until Later....
Tuesday, February 7, 2017
PPN Sixth Anniversary of Providing HOPE!!!!
Today is the Sixth Anniversary of providing HOPE to those with Periodic Paralysis through our Periodic Paralysis Network. It is also 'Periodic Paralysis World Awareness Day'... Six years ago today I (Susan Q. Knittle-Hunter, PPN Managing Director) got my Andersen-Tawil Diagnosis after nearly being killed by my doctors. It took me over 50 years...so a day of celebration!!!!
The following is a list of our services and features which have been developed for providing HOPE through AWARENESS, SUPPORT, EDUCATION and ADVOCACY, using all natural methods:
The following is a list of our services and features which have been developed for providing HOPE through AWARENESS, SUPPORT, EDUCATION and ADVOCACY, using all natural methods:
PPN Website: www.periodicparalysisnetwork.com
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
https://www.createspace.com/4111713
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
https://www.createspace.com/4326356
Video about this Guide and Workbook: https://www.facebook.com/sqkhunter/videos/10153659957417014/
"A Bill Of Rights For Periodic Paralysis Patients"
https://www.createspace.com/5705192
"What Is Periodic Paralysis?: A Disease Like No Other"
https://www.createspace.com/5809100
Our books are also found on
Amazon.com:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1
and
our PPN website:
http://www.periodicparalysisnetwork.com/books.htm
PPN Blog: http://livingwithperiodicparalysis.blogspot.com/
PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/
PPN Genealogy Discussion Group:
https://www.facebook.com/groups/580168915344191/
PPNI Genetics Discussion and Research Group:
https://www.facebook.com/groups/1574048096186578/
The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/
Periodic Paralysis Caregivers:
https://www.facebook.com/groups/366386850151623/
PP and Co-existing Conditions:
https://www.facebook.com/groups/145866829183840/
PP Buddies (Support when in an emergency)
https://www.facebook.com/groups/173361553092830/
PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork
PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor
Email: periodicparalysisnetwork@gmail.com
GoFundMe: http://www.gofundme.com/ftnr50
Bravelets: https://www.bravelets.com/bravepage/alone-in-the-dark-periodic-paralysis
Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc
Twitter: https://twitter.com/NetPeriodic
Periodic Paralysis World Awareness Day Page:
https://www.facebook.com/PPAwarenessDay/
Please check out our PPN Members World Map:
http://www.multiplottr.com/?map_id=55083
Thank you all for your support
Calvin Hunter and Susan Q. Knittle-Hunter
Co-Founders, Co-Creators, Co-Managers
Periodic Paralysis Network, Inc.
Sequim, Washington U.S.A.
All rights reserved. copyright © 2017 Periodic Paralysis Network
Monday, January 16, 2017
Providing HOPE to over 625 Members Now!!!
Congratulations to us at the Periodic Paralysis Network Support, Education and Advocacy Group...We are now providing HOPE to over 625 members all over the world!!
Our Website, other discussion groups/boards, books and activities available through PPN:
The following are the services and features of our PPN forum:
PPN Website: www.periodicparalysisnetwork.com
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
https://www.createspace.com/4111713
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
https://www.createspace.com/4326356
Video about this Guide and Workbook: https://www.facebook.com/sqkhunter/videos/10153659957417014/
"A Bill Of Rights For Periodic Paralysis Patients"
https://www.createspace.com/5705192
"What Is Periodic Paralysis?: A Disease Like No Other"
https://www.createspace.com/5809100
Our books are also found on
Amazon.com:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1
and
our PPN website:
http://www.periodicparalysisnetwork.com/books.htm
PPN Blog: http://livingwithperiodicparalysis.blogspot.com/
PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/
PPN Genealogy Discussion Group:
https://www.facebook.com/groups/580168915344191/
PPNI Genetics Discussion and Research Group:
https://www.facebook.com/groups/1574048096186578/
The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/
Periodic Paralysis Caregivers:
https://www.facebook.com/groups/366386850151623/
PP and Co-existing Conditions:
https://www.facebook.com/groups/145866829183840/
PP Buddies (Support when in an emergency)
https://www.facebook.com/groups/173361553092830/
PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork
PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor
Email: periodicparalysisnetwork@gmail.com
GoFundMe: http://www.gofundme.com/ftnr50
Bravelets: https://www.bravelets.com/bravepage/alone-in-the-dark-periodic-paralysis
Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc
Twitter: https://twitter.com/NetPeriodic
Periodic Paralysis World Awareness Day Page:
https://www.facebook.com/PPAwarenessDay/
Please check out our PPN Members World Map:
http://www.multiplottr.com/?map_id=55083
Thank you all for your support
Calvin Hunter and Susan Q. Knittle-Hunter
Co-Founders, Co-Creators, Co-Managers
Periodic Paralysis Network, Inc.
Sequim, Washington U.S.A.
All rights reserved. copyright © 2013 Periodic Paralysis Network
Wednesday, November 2, 2016
Bringing Hope To Over 600 Members Now!!
We at the Periodic Paralysis Network are now providing HOPE for over 600 members in all natural ways....
Thank you all for your support...
The following are the services and features of our PPN forum:
PPN Website: www.periodicparalysisnetwork.com
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
CreateSpace: https://www.createspace.com/4111713
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
CreateSpace: https://www.createspace.com/5809100
Video about this Guide and Workbook: https://www.facebook.com/sqkhunter/videos/10153659957417014/
"A Bill Of Rights For Periodic Paralysis Patients"
CreateSpace: https://www.createspace.com/5705192
"What Is Periodic Paralysis?: A Disease Like No Other"
CreateSpace: https://www.createspace.com/5809100
Our books are also found on
Amazon.com:
and
our PPN website:
PPN Book Discussion Group:
PPN Genealogy Discussion Group:
PPNI Genetics Discussion and Research Group:
The PPN Learning Center and Workshop:
Periodic Paralysis Caregivers:
PP and Co-existing Conditions:
PP Buddies (Support when in an emergency)
PPN Website Facebook Page:
PPN Author's Page:
GoFundMe: http://www.gofundme.com/ftnr50
Bravelets: https://www.bravelets.com/bravepage/alone-in-the-dark-periodic-paralysis
Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc
Twitter: https://twitter.com/NetPeriodic
Periodic Paralysis World Awareness Day Page:
Please check out our PPN Members World Map:
Thank you all for your support
Calvin Hunter and Susan Q. Knittle-Hunter
Co-Founders, Co-Creators, Co-Managers
Periodic Paralysis Network, Inc.
Sequim, Washington U.S.A.
All rights reserved. copyright © 2013 Periodic Paralysis Network
Wednesday, September 21, 2016
Over 575 Members!!
We at the Periodic Paralysis Network are proud to announce that we are now providing HOPE through Support, Education and Advocacy to over 575 members!!
The following are the services and features of Periodic Paralysis Network:
PPN Website: www.periodicparalysisnetwork.com
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
CreateSpace https://www.createspace.com/4111713
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
CreateSpace https://www.createspace.com/4326356
Video about this Guide and Workbook: https://www.facebook.com/sqkhunter/videos/10153659957417014/
"A Bill Of Rights For Periodic Paralysis Patients"
CreateSpace https://www.createspace.com/5705192
"What Is Periodic Paralysis?: A Disease Like No Other"
CreateSpace https://www.createspace.com/5809100
(Also found on Amazon.com and our website http://www.periodicparalysisnetwork.com/books.htm)
PPN Blog: http://livingwithperiodicparalysis.blogspot.com/
PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/
PPN Genealogy Discussion Group:
https://www.facebook.com/groups/580168915344191/
PPNI Genetics Discussion and Research Group:
https://www.facebook.com/groups/1574048096186578/
The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/
Periodic Paralysis Caregivers:
https://www.facebook.com/groups/366386850151623/
PP and Co-existing Conditions:
https://www.facebook.com/groups/145866829183840/
PP Buddies (Support when in an emergency)
https://www.facebook.com/groups/173361553092830/
PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork
PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor
Email: periodicparalysisnetwork@gmail.com
GoFundMe: http://www.gofundme.com/ftnr50
Bravelets: https://www.bravelets.com/…/alone-in-the-dark-periodic-para…
Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc
Twitter: https://twitter.com/NetPeriodic
Periodic Paralysis World Awareness Day Page:
https://www.facebook.com/PPAwarenessDay/
Please check out our PPN Members World Map:
http://www.multiplottr.com/?map_id=55083
Thank you all for your support...
Calvin Hunter and Susan Q. Knittle-Hunter
Co-Founders, Co-Creators, Co-Managers
Periodic Paralysis Network, Inc.
Sequim, Washington U.S.A.
All rights reserved. copyright © 2013 Periodic Paralysis Network
Friday, September 2, 2016
Our Newest Book: "What Is Periodic Paralysis?: A Disease Like No Other"
We at the Periodic Paralysis Network are proud and excited to announce that our newest book about Periodic Paralysis, "What Is Periodic Paralysis?: A Disease like No Other" is now ready to purchase!!! This is our first book written for those who do not have Periodic Paralysis.
"This book has been designed and written to share with family members, friends, teachers, coworkers, neighbors, doctors and others who should know about and may want to know, the truth about this cruel disease. This fourth book, just as the other three, was written because there is a need to educate others and bring awareness of Periodic Paralysis to the world. There was and is a great need for a book that can explain the important aspects of Periodic Paralysis in simple terms and how they relate personally to and for each individual with this disabling condition. Some of the issues that are covered include but are not limited to, what Periodic Paralysis is and what it is not, how it is diagnosed, how it is treated, what the symptoms are, what causes the symptoms, what does an episode of paralysis look like, what is the prognosis and what kind of complications can occur."
Susan Q. Knittle-Hunter
What Is Periodic Paralysis?
A Disease Like No Other
From
The
Periodic Paralysis Network A.S.E.A. Series
Awareness
~ Support ~ Education ~ Advocacy
Volume Two
Volume Two
Susan Q. Knittle-Hunter
Table of Contents
About A.S.E.A.
|
vi
|
|
Preface
|
viii
|
|
Acknowledgements
|
ix
|
|
Introduction
|
13
|
|
What Is Periodic Paralysis?
|
17
|
|
What Are The Symptoms Of Periodic Paralysis?
|
29
|
|
What Are The Triggers Of Periodic Paralysis?
|
43
|
|
Relieving The Symptoms Of Periodic Paralysis
|
53
|
|
Handling The Episodes Of Periodic Paralysis
|
65
|
|
Diagnosing Periodic Paralysis
|
77
|
|
Complications Of Periodic Paralysis
|
91
|
|
Prognosis For Periodic Paralysis
|
121
|
|
Conclusion
|
129
|
|
Resources
|
140
|
|
About the Authors
|
141
|
Preface
The Preface of a book gives the reader information
about how the book came to be, where the idea originated. In the case of this
booklet, my own family and the members of the ‘Periodic Paralysis
Network Support, Education and Advocacy Group’ inspired, What Is
Periodic Paralysis? A Disease Like No Other.
The members, now over 550 worldwide, share daily
their heart-breaking and frustrating experiences. They relate frightening
symptoms, years of painful and costly testing, a lack of being believed and
abuse by doctors, denial of diagnoses and denial of proper treatment. These
courageous and very ill people are under recognized; under diagnosed,
misdiagnosed, misunderstood and mistreated by the medical professionals with
whom they must deal and depend upon for their care. But to add insult to injury,
this same treatment is also received from family members and friends who also
tend to disbelieve the existence of the rare medical condition, Periodic
Paralysis.
For these reasons this booklet answering the
question: “What is Periodic Paralysis?” has been created and written, by the
PPN. The information used to describe and explain this disorder is referenced
and can be found at the Periodic Paralysis Network, Inc. Website, Blog
Articles, Discussion Groups and Books, to include: Living With Periodic
Paralysis: The Mystery Unraveled, The
Periodic Paralysis Guide And Workbook: Be All You Can Be Naturally and A Bill Of Rights For Periodic Paralysis Patients.
It can be purchased on CreateSpace and Amazon:
"What Is Periodic Paralysis?: A Disease Like No Other"
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