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' (Facebook Support Group). We have nearly 1,000 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 drug-free and all 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.' It is an open site and was designed to teach the world about Periodic Paralysis. Over 150 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 books are our most extensive and all-inclusive educational tools for individuals with all forms of PP. Our first book, ‘Living With Periodic Paralysis: The Mystery Unraveled’ is another means of support 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 supports all individuals with PP by providing the necessary tools to improve their lives, validate them and bring awareness of this condition to others for them. Our second book, ‘The Periodic Paralysis Guide And Workbook: Be The Best You Can Be’ 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. Our third book, ‘A Bill Of Rights For Periodic Paralysis Patients’ is outlined in seven sections, covering general rights, diagnosis, treatment in labs, treatment by doctors and treatment in the emergency room and the areas of research, awareness and insurance. In those, each concept is described and explained based on the true and actual history, experiences and needs of individuals with Periodic Paralysis. Hopefully, this information will bring about awareness of these issues and educate everyone who has the occasion to read this booklet as well as the medical professionals with whom individuals with Periodic Paralysis must depend upon for correct and proper care. Our fourth book ‘What Is Periodic Paralysis?; A Disease Like No Other’ was written because there is a need to educate others and bring awareness of Periodic Paralysis to the world. This book explains 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. For each of these issues there is space for personal information to be included and written in as needed to further explain how the disease affects each individual before the book is passed to a family member, neighbor, doctor or teacher. Each concept is described and explained based on the true and actual history, experiences and needs of individuals with Periodic Paralysis. These books are available on Amazon.
PERIODIC PARALYSIS NETWORK
Hope - Support - Education - Advocacy
We offer more education with several other discussion groups. We have a discussion group for our books. We encourage those who have read the books to join in dialogue about them. 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 groups for caregivers, for those with co-existing conditions and for dealing with the genetics of Periodic Paralysis. We have a Facebook Page, attempting to bring awareness to others about Periodic Paralysis and by doing so educating them also.
This Website is another good source of information and education about Periodic Paralysis. We have a series of our early PPNI articles, 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.
How 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 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
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
The Books: “Living with Periodic Paralysis: The Mystery Unraveled,” "The Periodic Paralysis Network Workbook And Guide,” “A Bill Of Rights For Periodic Paralysis Patients” and “What Is Periodic Paralysis: A Disease Like No Other"
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