The Periodic Paralysis Network

Hello All,

Since we have so many new members I wanted to review with everyone about what the Periodic Paralysis Network is all about. We have a forum with several different options for information and support. We have several discussion groups (support, genealogy/genetic, book discussion, medical professional and more), which are all private for obvious reasons. We have two pages, mostly for just reaching others who need to find our help and education. We have our original website with a great deal of information. And we have this blog, which is open, in order to reach everyone around the world (with a translator), including medical professionals. We also have written four books, "Living With Periodic Paralysis: The Mystery Unraveled." It has 444 pages of information, is fully indexed and we used over 250 references. It took us three years to write. Our second book is "The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally." Third we wrote about our medical rights in "A Bill Of Rights For Periodic Paralysis Patients." Our last book is "What Is Periodic Paralysis?: A Disease Like No Other." It is a book that can be shared with others about Periodic Paralysis.

The group, with the most members and used 24 hours seven days a week, including holidays, is our support, education and advocacy group.
 

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/
 

We welcome everyone and anyone who has any form of Periodic Paralysis or who suspects they have it (also family members). We provide support to those who are diagnosed or attempting to get a diagnosis.

We are an educational group because we provide information based on research. We attempt to answer any and all questions with information we find/found through research. Many of the answers are also in our book and on our website and our blog. Some things are also found in the "Files" section of this page.

We are an advocacy group. We work toward the improvement of quality and safety in healthcare for everyone with Periodic Paralysis. We are a member of the Patient Advocate Directory!!! They are a worldwide network of individuals and independent organizations working toward the improvement of quality and safety in healthcare.

We are here to help you "be the best you can be, naturally" and to keep you safe. Many of us cannot tolerate the pharmaceuticals/drugs/medications, which are typically prescribed and through research and experimentation, we have found natural ways to manage and ease the symptoms of Periodic Paralysis. We share them with you.

As advocates for you, we also pass along the information about the pharmaceuticals/ drugs/medications, which are typically prescribed for every form of Periodic Paralysis. We caution anyone on them or who is 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 if you are taking any pharmaceuticals/drugs/medications, anesthetics for surgery and IVs.These are all serious triggers.

The symptoms of Periodic Paralysis, brought on by many triggers can be and are life threatening. Many people with this condition have died from its affects. These can include, but are not limited to breathing, oxygen, choking, heart, and blood pressure issues. One of our main goals is to make everyone aware of these serious issues in order to keep everyone safe. Those of us with PP must take these things seriously. It is essential to avoid going into paralytic episodes. 

Periodic Paralysis is a mineral metabolic disorder and must be treated as such.

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 medical diagnosis and treatment. We continue to do research and provide the latest information to our members.

Until later…

Updated 8/23/2019