Serene Forest

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 Books:

"Living With Periodic Paralysis: The Mystery Unraveled"

"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"


"A Bill Of Rights For Periodic Paralysis Patients"

"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


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"




Hello All,
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."
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





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 thePeriodic 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"





Wednesday, July 13, 2016

550 Members!!!

We know have over 550 Members in our Periodic Paralysis Network Support Group!!!! We are providing HOPE through SUPPORT, EDUCATION and ADVOCACY!!!!

The following are the services and features of our PPN forum:
https://www.createspace.com/4111713 )
PPN Website: www.periodicparalysisnetwork.com

PPN Books:

"Living With Periodic Paralysis: The Mystery Unraveled"
CreateSpae https://www.createspace.com/4111713

"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
https://www.createspace.com/4326356

"A Bill Of Rights For Periodic Paralysis Patients"
https://www.createspace.com/5705192

(Also found on our website http://www.periodicparalysisnetwork.com/books.htm and on Amazon)

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/

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.

Wednesday, May 25, 2016

Over 525 Members!!



This is good news and bad news!!! We now have over 525 members!! The bad news is that so many people are suffering from this cruel disease. The good news is that we are able to help and provide HOPE by sharing support, education and advocacy.
Thank you all for your support!!!
The following are the services and features of our PPN Forum:
PPN Website: www.periodicparalysisnetwork.com
PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
(All found on Amazon and on 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/
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........

Wednesday, April 20, 2016



This is good news and bad news!!! We now have over 500 members!! The bad news is that so many people are suffering from this cruel disease. The good news is that we are able to help and provide HOPE by sharing support, education and advocacy.
Thank you all for your support!!!
The following are the services and features of our PPN Forum:
PPN Website: www.periodicparalysisnetwork.com
PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
(All found on Amazon and on 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/
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........

Tuesday, March 1, 2016

Rare Disease Day Photo

We wanted to share our observation of Rare Disease Day by sharing a picture of us with our new Periodic Paralysis Awareness T-shirts!!
Thank you all for your support!!!
Calvin and Susan Hunter Co-Founders, Co-Creators and C-Managers of Periodic Paralysis Network.

Monday, February 29, 2016

What is Periodic Paralysis?? For "Rare Disease Day"



What is Periodic Paralysis?


Periodic Paralysis is a little known, misunderstood, under recognized and difficult to diagnose mineral metabolic disorder, also known as an ion channelopathy.

Do you have any of the following symptoms or a combination of them?

  • Episodes of muscle weakness or paralysis in an arm or leg or the entire body?
  • Wake up and cannot move?
  • Racing or erratic heart beat?
  • Fluctuating blood pressure?
  • Difficulty breathing at times?
  • Potassium levels too low or too high?
  • Strange or opposite side effects from medications?
  • Medications make your symptoms worse?
  • Difficulty with anesthesia?
  • Medical testing always negative?
  • Doctors cannot figure out what is wrong?

You may have Periodic Paralysis!

On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IV’s and much more, potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to avoid the episodes. Gradual, progressive, muscular weakness can also affect the individual with this condition.

There are several forms of Periodic Paralysis:

Hypokalemic Periodic Paralysis

Paralysis results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium in the blood (hypokalemia) during paralytic episodes.

Hyperkalemic Periodic Paralysis

Paralysis results from problems with the way the body controls sodium and potassium levels in cells. It is associated with high levels of potassium in the blood (hyperkalemia) during paralytic episodes.

Andersen-Tawil Syndrome (ATS)

Paralysis results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle. During paralytic episodes, ATS can be associated with low potassium, high potassium or shifts within the normal (normokalemia) ranges of potassium. An arrhythmia, long Qt interval heartbeat, is associated with ATS as well as certain characteristics, such as webbed or partially webbed toes, crooked little fingers and dental anomalies.

Normokalemic Periodic Paralysis (NormoPP)

Paralysis results when potassium shifts within in normal ranges. This can happen in any form of Periodic Paralysis. The paralysis may result from the shifting itself, rather than low or high potassium or it may occur due to the shifting of the potassium, which can happen very quickly and is undetectable in lab testing.

Paramyotonia Congenita (PMC)

The skeletal muscles can become stiff, tight, tense or contracted and weak due when the sodium channels close much too slowly and the sodium, potassium, chloride and water continue to flow into the muscles. It is actually considered to be a form of Hyperkalemic Periodic Paralysis, however, the symptoms can appear from shifting of potassium into low or high ranges or even if potassium shifts within normal levels.

Thyrotoxic Periodic Paralysis (TPP)

Intermittent paralysis results from low potassium due to an overactive thyroid or hyperthyroidism. It can occur spontaneously or can result from a genetic mutation. Unlike the other forms of Periodic Paralysis, TPP can be treated and cured by removing or treating the thyroid.

Diagnosing:

Diagnosing for Periodic Paralysis takes an average of 20 years! This is due to the fact that all other conditions must be ruled out. Some of the known types of Periodic Paralysis have identified genetic markers. This means they can be diagnosed by DNA testing. But, many mutations have not been found yet so individuals with Periodic Paralysis need to be diagnosed based on the symptoms and characteristics.

Treatment:

There are no known cures, but the symptoms can be managed for most individuals using natural methods including diet changes and eliminating the triggers.

Please join us or contact us at the Periodic Paralysis Network
for more information.

We provide HOPE to individuals with Periodic Paralysis through:

*Awareness
*Support…
*Education
*Advocacy

For more information please contact us at:


PPNI Blog:

PPNI Books:

PPNI Support Group: