Providing Hope Through

Awareness – Support – Education – Advocacy

(ASEA)

Awareness

Awareness is a sense of understanding, knowing, recognition or mindfulness of something. At this time, among most people in the world, doctors, medical professionals and government entities, the term Periodic Paralysis has no meaning. It is not recognized, known about or understood by those in authority who should be aware of it. Very few people on earth have heard of it or know about it. When someone suffering the effects of the cruel condition of Periodic Paralysis mentions the term ‘Periodic Paralysis’ blank stares and lack of understanding are the norm, especially from medical professionals. This needs to be changed worldwide and here at the Periodic Paralysis Network, Inc, we are attempting to do this each and every day.

Too many individuals are suffering needlessly and even dying due to under-recognition, under-diagnosis and misdiagnosis. This has to stop. Those who know about and understand the condition must bring about awareness of it to people in all over the world, to medical professionals who should be able to recognize, diagnose and treat it and to governments for research.

More education and training is needed for students in medical school and for all other medical professionals including nurses, EMTs, paramedics, social workers, teachers, lab technicians and more. Periodic Paralysis needs to be as commonly understood as other medical conditions such as multiple sclerosis, muscular dystrophy, fibromyalgia, heart disease, diabetes, and Lou Gehrig’s disease.

For those with Periodic Paralysis, health is compromised, many are in pain, wheelchairs may be needed and living a normal life unaided is impossible. The future for these individuals is uncertain. Doctors need to understand this and family, friends, churches, neighborhoods and communities need to readily offer help, understanding and support.

We created the Periodic Paralysis Network hoping to provide the correct and vital information for people with PP, their family members and caregivers and all medical professionals. We hope as well to bring awareness to everyone in the world. We are doing this through our A.S.E.A Program. We are creating Awareness through Support, Education and Advocacy.

 Our features and services providing Awareness of Periodic Paralysis include:

Our Periodic Paralysis Network Inc Website: 

Our Periodic Paralysis Network Inc Books

  • Living With Periodic Paralysis: The Mystery Unraveled
  • The Periodic Paralysis Guide And Workbook: Be All You Can Be Naturally
  • A Bill Of Rights For Periodic Paralysis Patients
  • What is Periodic Paralysis?: A Disease Like No Other

Our Periodic Paralysis Network Inc Blog

Our Periodic Paralysis Network Inc Facebook Page

Our Periodic Paralysis Awareness Day Page

For more information about creating Awareness for Periodic Paralysis and the links to the above features, please read our Blog Article below:

Providing Awareness of Periodic Paralysis through A.S.E.A.
https://livingwithperiodicparalysis.blogspot.com/2020/07/providing-awareness-of-periodic.html

Support

The Periodic Paralysis Network, Inc. provides hope to individuals with all forms of Periodic Paralysis (PP) through ‘support,’ education and advocacy. We provide support to those who are diagnosed or attempting to get a diagnosis and to family members and caregivers. We do this in many ways, but our ‘Periodic Paralysis Network Support, Education and Advocacy Group’ is our most popular resource. We have nearly 1,000 members and gain more each week from all over the world, including Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Belgium, Canada, Finland, Australia, Mexico, Argentina, Ireland, Scotland, Bangladesh, Pakistan, Philippines just to name a few.

Our members receive support, advocacy, encouragement, understanding, empathy, validation and more. Members also gain information and knowledge about all aspects of Periodic Paralysis. We provide 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 pertaining to various aspects of Periodic Paralysis. They may dialogue by asking questions, commenting on others posts and sharing ideas. This group is closed to public view due to the nature of the subject and by request of the members. We are usually on in real time, researching and answering questions and providing support as needed for our 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 ALL NATURAL and DRUG-FREE 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 support through the PPNI, is our Blog. We offer support for individuals, their family members, caregivers and medical professionals by offering an open site for anyone to visit and learn more about the many and multifaceted aspects of Periodic Paralysis. It is interactive and has a translator.

We have written four books. 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.

We offer more support 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.

Go To Facebook Periodic Paralysis Network, Inc. Support Group

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’ (Facebook Support Group). We have nearly 1,000 members and gain more each week from all over the world. 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.

Advocacy

The Periodic Paralysis Network, Inc. is unique compared to the other Periodic Paralysis organizations. We provide hope to individuals with all forms of Periodic Paralysis (PP) through support, education and ‘advocacy.’ We work toward the improvement of quality and safety in healthcare for them. We are concerned with and advocate for their safety and proper medical and personal treatment by medical professionals. Some may wonder why this is a concern and why we feel it is necessary to advocate for the health and safety for people with Periodic Paralysis? We believe it is essential due to the serious nature and potentially life-threatening symptoms and side effects of this condition if it is not treated correctly. Periodic Paralysis is a mineral metabolic disorder and must be treated as such. We feel it is our duty to keep individuals safe and to give them the information and tools necessary to do that.

As advocates we also pass along the information about the drugs, which are typically prescribed for every form of Periodic Paralysis. Some do well on them, but many more have serious side effects. We provide the facts to those who are considering using them to be aware of the side effects and possible problems from them. We also caution everyone who has Periodic Paralysis to be very careful of taking any drugs or medications, anesthetics for surgery and IVs because they can be harmful and cause serious side effects, even death.

We are also concerned with the archaic and potentially life-threatening practice by uninformed doctors of provoking an individual’s symptoms and paralysis in order to diagnose a patient. Many individuals with Periodic Paralysis have been harmed or died during such a procedure.

Unless there are medical professionals with up-to-date information and an unbiased understanding of Periodic Paralysis in an emergency; an ambulance, an emergency room and hospital are extremely unsafe locations for most people with this condition. Many individuals while seeking a diagnosis see specialists and medical professionals who do not recognize the condition and may prescribe inappropriate and unnecessary medication, which may be harmful or deadly.

For all of the above reasons, we are concerned with and advocate for the safety and proper medical and personal treatment by medical professionals and we find it necessary to work toward the improvement of quality and safety in healthcare for all people with Periodic Paralysis. It is our goal to help each individual to be the best he or she can be, safely.

Blogs Written About The Effects of Drugs/Medications/Pharmaceuticals/Anesthesia in PP
By Susan Q Knittle Hunter

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