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Wednesday, November 20, 2013

The How and Why of our Book?? 'Living With Periodic Paralysis: The Mystery Unraveled'

Hello All,

They say, “Invention is born out of necessity”. Our book, living with Periodic Paralysis: The Mystery Unraveled was “invented” or written out of necessity and urgent need. The fact is when we began writing there were no other books written about Periodic Paralysis (PP) and information on the web was scattered and sketchy at best or too difficult to understand for the average person. There was then and is now an urgent need to educate
those with the different forms of Periodic Paralysis and their family members on all aspects of the disease including how to manage and alleviate their symptoms. There was and is also an urgent need to educate the medical professionals dealing with those individuals, and their families, to learn to recognize, diagnose and properly treat their patients in a timely manner.

After a lifetime of illness, misdiagnoses and mistreatment (some of which caused irreparable damage), three years ago at the age of 62, I finally discovered the name of the progressive disease that left me totally and permanently disabled with weak muscles throughout my body, intermittent periods of total paralysis, along with heart problems, breathing problems, blood pressure problems and exercise intolerance. Years of testing had ruled out all of the commonly known neuromuscular diseases. I had to look for something outside of the norm or for the "zebra", as one of the over 30 doctors I had seen over the past 6 years had called it and I had to do it myself.

One day as I searched the Internet, I came across a disease called Periodic Paralysis. The symptoms were exactly what I had been dealing with. I was shocked and the more I read, the more I knew Periodic Paralysis was the disease that was affecting me. I wanted to know more about it. I wanted to know so many things. I wanted to know the what, when, where, how and why of it. What type of disease is Periodic Paralysis? When was it discovered? Where can I find more information? Why did I get it? How can I get diagnosed? Is there medication or treatments that can help ease the symptoms? What type of doctor should I see? What is the cause? Is it a hereditary disease? Is it acquired? Where can I find a doctor who can treat my symptoms? What type of doctor do I need? Is it a hereditary disease? Is it acquired? How did I get it? Is it reversible? Are there different types of PP? What can I expect for my future? Am I dying? Are there others like me? Where could I find them?

I had great difficulty finding the answers to these questions. I found bits and pieces scattered throughout the Internet, enough, however, to be able to understand some basics about Periodic Paralysis, but it became painfully aware that there was very little information and very little help to be found for people in my situation, that is, having definite symptoms of the disease but no diagnosis. My husband Calvin and I began to research Periodic Paralysis and began to pull together every bit of information we could find to answer my many questions and to get a diagnosis. We hoped that a diagnosis would bring the opportunity for proper medication and treatment.

Based on the information we were able to find, Calvin put together a kit of medical equipment needed to monitor my symptoms. He also created a form to track the data as he painstakingly recorded it before, during and after my episodes. Over a two-year period, we experimented with various forms and amounts of potassium. We experimented with some medications. We experimented with diets. We experimented with oxygen therapy. We experimented with physical therapy and my tolerance for exercise. Calvin literally saved my life without the aid of any medical professionals. Armed with our documented results, my medical records and with the cooperation of a few open-minded doctors, I eventually received a diagnosis. 

Using the above information and the skills we learned as special education teachers, we created a website and discussion board for others who have symptoms of PP and cannot get help anywhere else. The Periodic Paralysis Network (PPN) was created to provide a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. We discuss issues relating to Periodic Paralysis in practical language. This book is an extension and culmination of our website. It is our intention to help others using our discoveries through this book.

Some of what I wrote was formulated and created in my mind during the periods of time I was partially or totally paralyzed. After regaining muscle strength, I would type my recollections and ideas. I recalled a lifetime of illness and gradual disability,  loss of a teaching career, mistreatment by medical professionals, disregard by family members, and a loss of friendships.  During the writing of this book, I researched, read and studied everything I could find about every aspect of the different forms of Periodic Paralysis. Due to Calvin’s research and his ability to save my life, together, we created the plan for naturally managing and treating many of the symptoms  of  Periodic Paralysis. This included reducing the number and severity of the paralytic episodes. It also included a pH balance diet, discovering triggers, finding amenable doctors.  The periods of paralysis were also times I could recall the psychological, emotional and social aspects of the cruel disease. I believe these to be very important issues of which no one has written and they needed to be included in this book.

So, after living with Periodic Paralysis for my entire life and after more than 3 years of research, reading, studying, referencing, experimenting, personal experience and hours and hours of typing, retyping, and editing, living with Periodic Paralysis answers all of the questions of the what, when, where, how and why of Periodic Paralysis and unravels all of the mysteries of this rare condition. Part One contains an account of my medical issues from birth until the present, in hopes of creating a scenario for which doctors and patients alike may be able to recognize the disease in its early stages. Part Two of the book covers every aspect of Periodic Paralysis. It is written in an easy to understand format. Each chapter is written with brutal honesty, and contains what the other books, discussion boards or medical sites about Periodic Paralysis on the Internet will not tell you. It is based on my experiences and what we learned through them. Part Three discusses the natural methods and technical information used to manage the symptoms based on years of research and experimentation. Part Four deals with the brutally honest emotional, psychological and social aspects related to living with Periodic Paralysis for the patient, caregiver and family.

All that we have written is as factual as possible. We make no apologies for our honest evaluation and interpretation of what we have experienced. We make no apologies for telling the truth. We have not hidden the reality of this cruel disease nor sugar-coated it in any way. It is with honesty, candor and with urgency that we present the facts that follow to the reader.

It is our hope that the medical professionals dealing with individuals with Periodic Paralysis may come to our site or read our book and learn more about how to recognize, diagnose and properly treat their patients in a timely manner.

living with Periodic Paralysis: The Mystery Unraveled is available in paperback, Kindle and eBook formats on and through our website,  

living with Periodic Paralysis


 Susan Quentine Knittle-Hunter

B. S.  Special Education

B. S.  Psychology


Calvin Hunter

 M.S. Information Technology
M. Ed. Special Education
B.S. Psychology
B.S. Behavioral Science

First Edition
Periodic Paralysis Network, Inc.

                             Table of Contents

Foreword One by Rose M. Watne MSW, LCSW
Foreword Two by Laurel Keith, Phlebotomist
Author’s Preface by Calvin Hunter
Acknowledgements by Susan Q. Knittle-Hunter
Acknowledgements by Calvin Hunter
Introduction by Susan Q. Knittle-Hunter

Part One: My life with Periodic Paralysis

Chapter 1:
Alone in the Dark
Chapter 2:
My Childhood and Teen Years
Chapter 3:
Babies and Young Adulthood
Chapter 4: 
Physical Problems Begin
Chapter 5:
College and Building a Cabin
Chapter 6:
Chapter 7:
Giving Up Teaching & Becoming  Disabled

Chapter 8:
Moving, More Diagnoses and Doctors
Chapter 9:
The Big “Seizure”
Chapter 10:
Periods of Paralysis and a Diagnosis
Chapter 11:
Reality and Hope

Part Two: Understanding  Periodic Paralysis

Chapter 12:
What is Periodic Paralysis?
Chapter 13:
Andersen-Tawil Syndrome
Chapter 14:
What is an Ion Channelopathy?
Chapter 15:
Description of  Paralytic Attacks
Chapter 16:
Chapter 17:
Chapter 18:
Chapter 19:

Part Three: Managing Periodic Paralysis

Chapter 20:
Treating and Managing Periodic Paralysis

Chapter 21:
Educating Yourself
Chapter 22:
Discovering Your Triggers
Chapter 23:
Relieving Your Symptoms
Chapter 24:
Monitor Your Vitals
Chapter 25:
Finding a Doctor Who Cares
Chapter 26:
Getting a Clinical Diagnosis
Chapter 27:
Assembling and Directing the Team
Chapter 28:
Directing the Paramedics
Chapter 29:
Directing the Emergency Room Staff

Part Four: Psychological and Social  Expectations

Chapter 30:
Seeking a Genetic Diagnosis
Chapter 31:
Emergency Room
Chapter 32:
Chapter 33:
Chapter 34:
Chapter 35:
Chapter 36:


About the Authors


Works Cited





So now you know the how and why of our book living with Periodic Paralysis: The Mystery Unraveled.

Until Later...

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