PERIODIC PARALYSIS NETWORK, INC.
Hope - Support - Education - Advocacy
Home About Us Contact Publications Support Education Advocacy

Education


The Periodic Paralysis Network, Inc. provides hope to individuals with all forms of Periodic Paralysis (PP) through support, education and advocacy. Education is a very large part of the Network and one of the most important aspects of what we provide to individuals with all forms of Periodic Paralysis, their families, caregivers and the medical professionals who interact with them. We are retired educators; both former Special Education Teachers and enjoy the opportunity of continuing to "teach" everyday in many new and unique ways.

Our largest 'classroom' is the 'Periodic Paralysis Network Support, Education and Advocacy Group.' ( https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/ ). We have over 300 members and gain more each week from all over the world. Visit our PPN Members World Map at: http://www.multiplottr.com/?map_id=55083. Besides receiving support and advocacy members also gain information and knowledge about all aspects of Periodic Paralysis. We provide a hands-on approach to understanding the condition and ideas on how to find doctors, find a diagnosis, receive the proper help in the ER, how to discover triggers and much more. Members on this board are encouraged to engage in an open discussion of any topic of interest or concern pertaining to various aspects of Periodic Paralysis. They may dialogue by asking questions, commenting on others posts and sharing ideas. We are usually on in real time, researching and answering questions and providing referenced answers, data and information. This group is closed to public view due to the nature of the subject and by request of the members.

Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate and safe medical diagnoses and treatment. We continue to do research and provide the latest information to our members.

Another of our popular features, offering education and information through the PPNI, is our 'Living With Periodic Paralysis: The Blog.' (http://livingwithperiodicparalysis.blogspot.com/ ). It is an open site and was designed to teach the world about Periodic Paralysis. Over 80 separate articles have been compiled and written, to date, covering original subjects from "Avoiding the Pitfalls of the Emergency Room" to "Conversion Disorder vs Periodic Paralysis." Each is extensively researched and referenced. Anyone may visit and learn more about the many and multifaceted aspects of Periodic Paralysis. It is interactive and has a translator.

Our book, living with Periodic Paralysis: The Mystery Unraveled: is our most extensive and all-inclusive educational tool for individuals with all forms of PP. It is a comprehensive look at Periodic Paralysis. It contains 444 indexed pages with over 250 references. We share Susan's story of near death due to misdiagnoses and improper treatment of this mysterious disease and hope through natural management techniques. We bring awareness of PP to others who may have it and to doctors for more timely recognition, diagnosing and correct treatment. Our book highlights problems within the medical system today and shares insight into the social and psychological aspects of living with a rare, chronic and progressive disease. This information provides the necessary tools to improve lives, validate them and bring awareness of this condition to others for them. (At this time we are close to completing and publishing our latest book; a guide and workbook. It is designed to accompany it or it may stand-alone. It contains all of the tools necessary to complete the goals and objectives of the various plans outlined in the book.)

We offer more education with two other discussion groups. We have a discussion group for our book. We encourage those who have read the book to join in dialogue about it. We also have a discussion group with a focus on genealogy research. We believe that many of us may link genealogically and genetically. The information we are gathering may aid in diagnosis in the future.

We have two Facebook Pages, attempting to bring awareness to others about Periodic Paralysis and by doing so educating them also.

Individuals are encouraged to share their stories in "Our Stories: You are Not Alone," yet another way to educate others about living with and the struggles of Periodic Paralysis.

This Website is another good source of information and education about Periodic Paralysis. We have the series of early PPNI articles written as well as great information provided about medical equipment, metabolic acidosis, pH balanced diet and more listed in the links below. The links to the Blog, Discussion Groups, Books, Facebook Pages and more are found throughout this Website.

The articles listed below contain information designed to help you better understand and manage Periodic Paralysis.


How Do I Manage Periodic Paralysis? WALKING A TIGHTROPE
Periodic Paralysis and Oxygen ; I CAN'T BREATHE
What is Periodic Paralysis? PERIODIC PARALYSIS IS NOT YOUR FRIEND
What is Andersen-Tawil? MORE THAN 100 OF US
What are the Periodic Paralysis Triggers? AVOID AT ALL COST
How Do I Discover My Triggers? IF YOU DID NOT WRITE IT DOWN, IT DID NOT HAPPEN
Describe - Diagnose - Manage Periodic Paralysis
How Do I Get a Diagnosis; HIT THEM BETWEEN THE EYES WITH THE FACTS!
How Bad Will I Get? I DO WHAT I CAN, WHEN I CAN, IF I CAN
Periodic Paralysis and Your Doctors; THE LOOK AND THE SHRUG
Periodic Paralysis and the EMT'S; NO IV OR TOURNEQUET PLEASE
Periodic Paralysis and the ER; BE AFRAID, BE VERY AFRAID
Periodic Paralysis and the Family; IT'S JUST THAT SIMPLE
Periodic Paralysis and Your Friends; WHAT FRIENDS?
Period Paralysis and Caregivers; GIVE ME A BREAK
Periodic Paralysis and Your Community; EDUCATE, EDUCATE, EDUCATE
Periodic Paralysis and Genetics “THE RED BADGE OF COURAGE”
Periodic Paralysis and Traveling; A PLEASANT SURPRISE
Finding a Doctor Who Cares; NOT AN EASY TASK BUT POSSIBLE

Medical Toolkit; MEDICAL SUPPLIES

Diet and Nutrition: Management of Periodic Paralysis

'Acid-base pHysiology' ACID BASE PHYSIOLOGY

Clinical Review; METABOLIC ACIDOSIS

Press Releases; NEWS ARTICLES



Periodic Paralysis Network, Inc. (PPNI).
Copyright © 2014 All rights reserved.

All materials posted here are subject to copyrights owned by the Periodic Paralysis Network, Inc. (PPNI). Any reproduction, retransmissions, or republication of all or part of any document found on this site is expressly prohibited, unless PPNI has explicitly granted its prior written consent to so reproduce, retransmit, or republish the material. The names, trademarks, service marks and logos of PPNI appearing here may not be used in any advertising or publicity, or otherwise to indicate PPNI's sponsorship or affiliation with any product or service, without PPNI's prior express written permission. The inclusion of "links" here provide convenient direct access to other Internet sites but PPNI does not endorse, approve, certify or make warranties or representations as to the accuracy of the information on other sites. PPNI will make reasonable efforts to include accurate and up-to-date information but PPNI makes no warranties or representations as to its accuracy. PPNI, nor any party involved in creating, producing or delivering information and material here shall be liable for any direct, incidental, consequential, indirect, or punitive damages arising out of access to, use of or inability to use, or any errors or omissions in the content thereof.

All other rights reserved.