Hope For Individuals With Periodic Paralysis

Hello All,

I am struggling today, especially with my breathing and speech. Early last evening I went into a full body paralytic episode. It lasted for a few hours, and I was thankful that I was able to fall asleep for part of it. As usual, I could not open my eyes or speak. After I slipped into it, my head fell forward and thankfully Calvin noticed right away because it was getting painful. He reclined my chair back and fixed my head. He put a blanket around it so it could not fall to either side and become painful. Then I fell asleep. After I woke up, it was quite a while before I was able to open my eyes. I could finally see the TV and Christmas tree lights again. It was a little while longer before I could move my fingers. I was surprised at the time; much later than I thought. Calvin helped me to the bathroom...always the most embarrassing for me and then to bed. Thank you Calvin. I love you too.

Hope For Individuals With Periodic Paralysis

What is hope? According to Longman Dictionary of Contemporary English ¹ hope is “a feeling of wanting something to happen or be true and believing that it is possible or likely.” Another dictionary states hope is a "feel[ing] that something desired may happen". Hope is a sense or desire that things will turn out for the best. The word hope may be used as a noun or a verb. ²

In terms of my life with Periodic Paralysis, which is a very rare, debilitating, metabolic disorder, many doctors, including the specialists, have told me that there is nothing they can do for me. I can take no medications, have no surgeries and I am in a gradually declining physical state. I would be dead now if it were not for my husband, Calvin’s research and fight for the things that now keep me alive and are giving me a better quality of life. He found that preparing and feeding me a pH balanced diet with needed supplements, providing me with oxygen therapy, helping me to discover and avoid my triggers, sheltering me from stress, keeping me hydrated, monitoring my vitals and remaining optimistic brought me back from the brink of death and reduced my paralytic episodes from 4 or 5 full body attacks a day lasting several hours at a time to 1 or 2 less severe episodes a month!

He had hope. He had a desire that things would turn out for the best. He was correct in what he did and how he did it and was optimistic that I would get better. He maintained hope that I would improve in all ways and the truth is that I did. Since that time, because of his hope and optimism, we wrote and published, six months ago, the first book about Periodic Paralysis. It is about how he maintained hope and brought me back from near death, to being able to write a book about it.

Not long after Living With Periodic Paralysis: The Mystery Unraveled was published, someone from another PP organization dared to write me and tell me that my book did not provide “hope” for people with Periodic Paralysis. This person obviously did not read all 430 pages; in fact they probably did not read even the front matter of the book or the Table of Contents.

The word “HOPE” first appears on page iv in the Table of Contents where Chapter Eleven, “Reality and HOPE” is listed. It then appears on pages xi, xii, and xiii.  On page xii I write to my brothers: “I hope the things in this book will help you to find a better quality of life.”  Calvin uses the word “HOPE” on page xiii, in the first sentence of his Acknowledgements.

In my Introduction, on pages 4 and 5 I use the word “HOPE” six times in the last paragraph:

”We hope everyone reading this book will have a better understanding of Periodic Paralysis. If you have a form of Periodic Paralysis, we hope you can improve the quality of your life by following our natural and common sense plans and advice. If you do not have a diagnosis we hope our ideas will be instrumental in helping you to get a diagnosis. If you are a doctor or health care provider, we hope you will be able to recognize, diagnose and treat individuals with Periodic Paralysis correctly, in a timely manner. If you are a social worker, therapist, caregiver, family member or friend, we hope you will be able to offer the understanding and support needed to your patient, family member, or friend who has this condition with your newly gained information. We especially hope you will know that you are not alone.”

The final page in which “HOPE” appears is 384, in my Conclusion. I wrote: “Today was a ’“Precious Stone Day.’ I was able to write this and share it with you. I hope that after reading this book you will begin to have more  ‘Precious Stone Days’ and even some ‘Diamond Days.’”

The following are the pages in which the word, “HOPE” appears:

 
hope, xi, xii, xiii, 3, 5, 54, 69, 75, 93, 174, 177, 189,  224, 226, 258, 299, 300, 304, 312, 325, 330, 336, 338, 339, 343, 358, 360, 365, 375, 379, 380, 384

My book, Living With Periodic Paralysis: The Mystery Unraveled was written in four distinct sections. The following is how the sections are described:

”After a lifetime of experience and taking over two and one half years of experimentation, detailed research and tremendous study to write, 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 the hope 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 again brutally honest emotional, psychological and social aspects related to living with Periodic Paralysis for the patient, caregiver and family not found anywhere else.”

Over 200 pages, the entire second and third parts or sections of this book, are entirely devoted to understanding Periodic Paralysis and offer an entire plan to improving ones life by using natural and common sense methods and ways to avoid developing complications.

Part Two: Understanding  Periodic Paralysis

 

Chapter   12:	What is Periodic Paralysis?	73
Chapter 13:	Andersen-Tawil Syndrome	81
Chapter 14:	What is an Ion Channelopathy?	95
Chapter 15:	Description of Paralytic Attacks	103
Chapter 16:	Potassium	115
Chapter 17:	Triggers	121
Chapter 18:	Prognosis	127
Chapter 19:	Complications	135

Part Three: Managing Periodic Paralysis

Chapter 20:	Treating and Managing Periodic Paralysis	181
Chapter 21:	Educating Yourself	187
Chapter 22:	Discovering Your Triggers	193
Chapter 23:	Relieving Your Symptoms	205
Chapter 24:	Monitor Your Vitals	223
Chapter 25:	Finding a Doctor Who Cares	235
Chapter 26:	Getting a Clinical Diagnosis	245
Chapter 27:	Assembling and Directing the Team	261
Chapter 28:	Directing the Paramedics	267
Chapter 29:	Directing the Emergency Room Staff	277

Although I remain in a continual gradual decline, due to several wrong diagnoses, improper treatments and wrong medications over 62 years, which all caused permanent damage, I know that most everyone else with Periodic Paralysis will not end up like me. I have hope and am optimistic that most individuals can tolerate the medications available and maintain a fairly normal and productive life. I remain hopeful that those with forms of Periodic Paralysis, which do not respond to the medications or are made worse by them, can follow the plan laid out in our book, improve their conditions and live a much more normal and productive life. I remain hopeful and optimistic because I see it happening everyday to the people in our PPN Support and Education Group and to those who are reading our book. We share our knowledge and experience and everyday we see and hear about the lives being changed for those who are willing to make the lifestyle changes. It is not an easy path for us. We must walk a constant tightrope, but we do not give up hope.

                      

Living With Periodic Paralysis: The Mystery Unraveled, offers HOPE to everyone with Periodic Paralysis.

1. p://www.ldoceonline.com/dictionary/hope_2
2. "Hope | Define Hope at Dictionary.com". Dictionary.reference.com. 1992-11-27. Retrieved 2012-10-02.
   
   
   Until later…