'What Is Periodic Paralysis? A Disease Like No Other' ~ Fourth Anniversary!

 Hello All,

This week we celebrate the fourth anniversary of publishing our fourth book, "What Is Periodic Paralysis?: A Disease Like No Other."

I am including some information about it; the Table of Contents and the Preface.

Table of Contents

About A.S.E.A. vi

Preface viii

Acknowledgments 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 book, my own family and the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ inspired, What Is Periodic Paralysis? A Disease Like No Other.

The members, now over 900 (update) 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.

This booklet has been designed and written to share with family members, friends, teachers, coworkers and others who should know about and may want to know, the truth about this cruel disease.

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 from our PPNI Website Bookstore:

https://periodicparalysisnetwork.com/bookstore/

Or at Amazon:

https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

Those of us with Periodic Paralysis are each totally individual and unique!!

Those of us with Periodic Paralysis are each totally individual and unique!!

No two of us are exactly alike. We each experience our PP differently. Our episodes and symptoms are individual and unique to each of us.

Our episodes are based on three things: the form or forms of PP we have, the trigger or triggers causing them and any other co-existing conditions we may have.

So our episodes will happen as often as we introduce our triggers to ourselves.

They will last as long as that trigger somehow determines (some triggers may cause short episodes, some longer) and be as severe as that trigger determines, for instance, they may be as simple as a twitch of the eyelid for a few hours, a numbness or tingling of an arm or a full, total-body (from head (including the inability to see) to toes), extreme episode with heart, blood pressure, breathing and choking lasting many hours. (I have had these lasting 7 hours...most were about 4 hours several times a day.)

If we have coexisting conditions symptoms and episodes can be more severe, depending on how the trigger also affects the other condition and how the coexisting condition affects the PP.

It is usually quite easy to detect the triggers/causes. If you keep a journal or keep track by writing down everything you do, eat, drink and more, and then keep track of when your symptoms occur and what they are, you will see a pattern emerge and be able to figure it out. You can eliminate or modify the triggers to eliminate the episode/symptoms.

I went from 4 or 5 severe episodes a day to 1 or 2 a year, much less severe and lasting a much shorter time (except for at night) by charting everything, eliminating the trigger/s, changing my diet and by staying in total balance.

None of us will have the same triggers, the same types of episodes, the same number of episodes and the same length and degree of episodes. Each of us is very unique...this even applies to those in the same family. My family members with PP are totally different in how our episodes present themselves and our triggers are not the same. We each have different coexisting conditions as well.

The following Blog Article has a group of articles and links to help each person understand how to create their own Individual Management Plan (IMP).

https://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html

Until later...

Our New and Updated Periodic Paralysis Network Inc Website

 

We are previewing our new and updated Periodic Paralysis Network Inc Website today!! Please go in and have a look. We are now offering our books in Ebook format in our new book store, as requested. Our Google Blogger can now be accessed through the website as well. We have a new Announcement Page to keep everyone updated. More new features are in the planning stage. Check out the Menu Bar for information about the PPNI Company and Website.

www.periodicparalysisnetwork.com

Providing HOPE to over 1,050 members!!!

 

Periodic Paralysis Network Support Group

IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis

For all of the parents who are sending their children with PP back to school, this may be helpful. It is written for those in the USA and to help to outline and write either an IEP (Individual Education Plan) or a 504 Plan (both legal and binding documents in the USA). I am a retired Special Education Teacher. 

(This may or may not be applicable at this time in dealing with Covid-19.)

I wrote this for a parent awhile back...I have meant to post it as a Blog Article, but have never quite finished it before...I hope this can be helpful.

 

IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis at School

 

Each plan is individualized to your child's needs, accommodations and restrictions. The biggest difference in them is how it is funded and who will be in charge of the plan.

The best place to start is to have a copy of the information about your child’s form of Periodic Paralysis and how it affects him or her. No one will know what it is or be able to understand it without some background information.

Next, you will need to come up with a list of the needs, accommodations and restrictions, etc that are necessary for your child. You can do this with your doctor or come up with them and then ask the doctor to put them on his/her letterhead for you. The school will have a better time believing and following through this way. This should include the issues related to his heart, breathing, blood pressure, cognitive issues, muscle weakness, and/or paralysis as the potassium shifts.

How to recognize an episode? What to do in an emergency? Teachers and nurses should be trained to recognize signs of an episode and know what to do.

Triggers and how/what to avoid? If any type of exercise causes an episode, then he or she should not have PE, or can he do some simple things like walking, but not running or swimming?

Food restrictions, or does he or she need to eat and or drink something every few hours?

Does he or she need more time to get from class to class? Does he or she need help to get from class to class? Should he or she have a friend with him at all times in case he or she goes into an episode? Elevator rather than walking up and down stairs? Can he or she walk from class to class but not out to the football field?

Due to the time length of episodes or abortive attacks, does he or she require more time to complete assignments? Or does he or she need homeschooling/instruction from time to time? Do the district days of absences allowed need to be changed? Are days added for him?

Does he or she need adaptations such as using a computer rather than writing with a pencil or pen or doing his or her work orally or verbally?

Can he or she carry his or her books from class to class? Too many books at a time? Can he visit his or her locker more often or leave books and supplies in the classroom with the teacher?

Does he or she need a special chair or wheelchair at times in which he or she can recline due to weak trunk muscles?

Does speech/talking in the classroom need to be limited to short periods of time due to weak mouth and throat muscles?

Eyes/eyelids may become too weak to read, etc. Can lectures be recorded or can a friend share notes?

Another critical issue to consider is whether the child's symptoms may require him or her to remain at home permanently using homeschooling, attending school remotely or possibly a combination of the two.

 

**Purchasing a copy of our book, What is Periodic Paralysis? A Disease Like No Other and completing your child’s individual, important information related to Periodic Paralysis at the end of each chapter is an excellent way to share the data and instruction for the teachers, nurses and administrators. This is why this book was created, for sharing and teaching others about Periodic Paralysis.

The following are example pages from the book:

What is Periodic Paralysis? May be purchased at Amazon:
https://www.amazon.com/gp/product/1536851736/ref=dbs_a_def_rwt_hsch_vapi_tpbk_p1_i1