Serene Forest

Sunday, November 11, 2018

Happy Fifth Anniversary to Our PPN Blog!!

Happy Fifth Anniversary to Our PPN Blog!!

            It has been five years since I created and wrote my first article in our Periodic Paralysis Network (PPN) Blog, Living With Periodic Paralysis: The Blog. I decided because our PPN Support Group was open to only those who have PP and their family members, that we needed another format for sharing information about Periodic Paralysis (PP) and for bringing more awareness to this rare, little understood, disabling and cruel medical condition, which is a mineral metabolic disorder.

Since that day, over 150 articles have been written and shared about every aspect of Periodic Paralysis from what it is, to how to manage the symptoms and how to get a diagnosis.

The following was our first Blog article:

Hello All,

Welcome to our new blog!!!! It is our desire to share with the world everything and anything we can about Periodic Paralysis with the hope of educating and supporting others with the condition and educating others who do not have it but would like to know about it, including doctors and medical professionals. I began a blog several years ago and wrote daily for over a year, but it was a closed blog, as is our support group, so only our members could read what I wrote. We have been looking for a way to be able to reach more people with our important information, so decided it was time to create a new blog and open it up to the world!!!! Please feel free to ask questions and share your experiences with us.

We would like to introduce ourselves:

I am Susan Q. Knittle-Hunter and my husband Calvin Hunter. We are passionate about helping others with Periodic Paralysis and sharing information about it. Periodic Paralysis is very rare, hereditary, debilitating, difficult to diagnose, mineral metabolic disorder, also known as an ion channelopathy. I have a form of it and was 62 years old when I was finally diagnosed, 3 (now 8) years ago, after suffering the effects of it nearly my entire life and nearly dying from the wrong diagnoses and incorrect treatments I received.

Calvin Hunter and I are the founders and creators of an on-line independent organization, the Periodic Paralysis Network, a private educational, support and advocacy organization, which is patient-safety-related due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not treated correctly.  We have a website with a forum containing 3 distinct discussion groups and we have written and published two books, the only two (now 4) books written about Periodic Paralysis...Living With Periodic Paralysis: The Mystery Unraveled, which is an extension of our website and a workbook...The Periodic Paralysis Guide and Workbook: Be The Best You Can Be Naturally. We work towards the improvement of the quality and safety of patients from all over the world with the various forms of Periodic Paralysis. Our focus is on educational resources to build self-reliance and self-empowerment and to prevent possible harm from improper treatment. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods. We also offer strategies to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. We have members from all over the world, (Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Canada, Finland, Australia, and more) who are seeking help for themselves, their children and entire families and are unable to find it anywhere. We provide ideas on how to find doctors, get a diagnosis, get the proper help in the ER, how to discover their triggers and much more.

Periodic Paralysis is often misdiagnosed and mistreated, thus causing more damage or possible death to the person with it. There are several types: Hypokalemic Periodic Paralysis (low potassium), Hyperkalemic Periodic Paralysis (high potassium) and the type I have, a variant of Andersen-Tawil Syndrome (ATS), is the most rare and the most serious type. Long QT interval heartbeats can accompany the episodes. On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, etc., potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Permanent muscle weakness may occur over time. If it affects the breathing muscles it can become terminal. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to avoid the episodes. There are no known cures, but there are treatments/drugs for some forms, which can be and are successful for some individuals (but the side effects over time can be and are harmful).

The type I have, Andersen-Tawil Syndrome (ATS), however, has no traditional medications, which can alleviate the symptoms, but by avoiding the triggers and by using some natural methods, the number of paralytic episodes can be reduced and the severity of the episodes can be lessened. Due to many wrong diagnoses and improper medications, I am severely disabled in a power wheelchair and on oxygen therapy 24/7. I was having episodes 4 to 5 times a day but now, with the natural methods have been able to reduce the number to about 1 or 2 a month (Now once or twice a year) during my waking hours (sleep is my biggest trigger so I continue to have them every night as I sleep) with less severity and for shorter periods of time. Calvin's tireless research discovered these methods and saved my life.

I earned B.S. degrees in Psychology and Special Education at the University of Utah and spent many years as a teacher and case manager working with children and adults with disabilities. Calvin earned B.S. degrees in Behavioral Science and Psychology at Westminster College and the University of Utah. He also holds a M.Ed. degree in Special Education and M.S. degree in Information Technology from the University of Utah and Capella University. Calvin worked in a variety of fields including teaching, corrections and case management.

We are now retired and enjoy the peace and beauty of the forest in our new home on the Olympic Peninsula in Washington. We live with two spoiled cats and plenty of wildlife. We are presently writing our next books and continue to work daily to help others with PP. In his spare time, Calvin enjoys working with wood and tends our organic garden while I enjoy genealogy research and reading historical romance novels. We have three children and five grandchildren.

Please join us often for a new lesson or story related to Periodic Paralysis. Please feel free to ask questions and share your experiences with us.

If you have Periodic Paralysis or suspect you have it and would like to join us on our education and support group, please use the following link:

For more information please visit our:

Until later....

            Over the past five years we feel that we have been successful in our endeavors to educate the world about Periodic Paralysis.  On the day we posted our first article five years ago, we had less than 150 members. Today we have over 800 members from all over the world! Some of them joined us after finding our Blog.

The following are the titles of our most popular articles followed by the number of views:

Why We Should NOT TAKE DRUGS: Idiosyncratic and Paradoxical Reactions To Drugs


Periodic Paralysis and Metabolic Acidosis

2, 986


What is Andersen-Tawil Syndrome?

2, 449


Periodic Paralysis and Anesthesia



Conversion Disorder vs Periodic Paralysis



Paramyotonia Congenita: Another Form Of Periodic Paralysis



What is Hypokalemic Periodic Paralysis?



Permanent Muscle Weakness in Periodic Paralysis



Exercise Intolerance



What is Periodic Paralysis?



The Connection Between Mitochondria and Autoimmune Disease in Periodic Paralysis



Why People With Some Forms of Periodic Paralysis Should Not Use Intravenous Therapy (IVs)



The following is the List and Links of the PPN Blog Articles

(This begins with the most recent articles and scrolls down to older articles)

How Many People Really Have Andersen-Tawil Syndrome?? More than 100!!


How To Manage Our Periodic Paralysis Symptoms Naturally: Total Balance And Proper Diet


Periodic Paralysis: Secondary Causes???


Balance and Periodic Paralysis


Warning About Free Genetic Testing For Periodic Paralysis


Hope And Living With Periodic Paralysis, A Chronic Illness


Now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 700 members worldwide!!!


RARE Champion of Hope Award


Providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 650 members!!


Rare Disease Day February 28, 2017


Best Way to Share Awareness of Periodic Paralysis With Others


Periodic Paralysis World Awareness Day 2017


PPN Sixth Anniversary of Providing HOPE!!!!


Providing HOPE to over 625 Members Now!!!


Bringing Hope To Over 600 Members Now!!


Over 575 Members!! Our


Newest Book: "What Is Periodic Paralysis?: A Disease Like No Other"


Congratulations Periodic Paralysis Network!!! Over 50,000 views!!!!!


550 Members!!!


Over 525 Members!!


This is good news and bad news!!! We now have over 500 members!!


Rare Disease Day Photo


What is Periodic Paralysis?? For "Rare Disease Day"


Happy 5th Anniversary PPN and Periodic Paralysis Awareness Day!!


Periodic Paralysis Awareness Campaign!!

475 Members!!!


Average Number of Paralytic Attacks Per Year?


Normokalemic Periodic Paralysis Update


Periodic Paralysis World Awareness Day February 7, 2016


Periodic Paralysis And Co-existing Medical Conditions


450 Members!!!!


Happy Second Anniversary For Our PPN Blog!!


Permanent Muscle Weakness (Revised)


Invisible Illness Week!! Periodic Paralysis Awareness!!


Our Latest Book: "A Bill Of Rights For Periodic Paralysis Patients" the first in our A.S.E.A.Series


"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!! (Revision)


Over 425 Members Now!!!


The Truth About The New Drug For Periodic Paralysis: It Is Not New


A New Drug For Periodic Paralysis? Helpful Or More Of The Same?


Bill of Rights for Periodic Paralysis Patients


Scandinavian Periodic Paralysis Support Group


Identify And Eliminate The Triggers Of Periodic Paralysis: Part Two


Identify And Eliminate The Triggers Of Periodic Paralysis: Part One


Trying To Balance My Life-Periodic Paralysis! Guest Blog Article from Julie Nielsen Cabitto


Periodic Paralysis and Depression


Over 400 Members!!!!!


Doctors Not Being Held Accountable: The Periodic Paralysis Diagnosis By Guest Blogger Maureen McCutcheon


375 Members!!!


A Poor 'Product' That is Being Called 'Medical Care': By Maureen McCutcheon

How To Get A Periodic Paralysis Diagnosis: “Hit Them Between The Eyes With The Facts”


Periodic Paralysis and "Post Traumatic Medical Stress Disorder" (PTMSD)


Phishing Scam Using Our Book...Please Beware.....


Periodic Paralysis and the EMG (CMAP)


350 Members!!


Happy Periodic Paralysis Awareness Day and Happy Fourth Anniversary for PPNI!!!!


Compilation of Articles Written About Drugs and Periodic Paralysis


325 Members!!


The Survey Results: Part One


The Connection Between Mitochondria and Autoimmune Disease in Periodic Paralysis


Genetic Mutation Overview


Our New Book!!! The Periodic Paralysis Guide And Workbook


"Living with Periodic Paralysis: The Blog" Happy First Anniversary!!




Bravelets Cause!!


300 Members!!!


Periodic Paralysis Awareness GoFundMe


"This is Not an Acceptable Way to Make a Diagnosis" Guest Blogger


Conversion Disorder Again?? Really??


Why haven't they done genetic testing?


The Incorporation of Periodic Paralysis Network, Inc (PPNI)


GeneticTesting Should Be For Any Mutation Close To The Relevant Gene


"Why Do You Need A Diagnosis?"


Someone who understands (Guest Writer Maureen)


Pain and Periodic Paralysis


275 Members!!


Our Members Around the World!!


All patients should be treated with dignity! Guest Blogger: Maria Pinzon


250 Members!!!!


Exercise Intolerance


Types of Potassium


Open Letter To Doctors by Guest Writer, Carolanne


Beware Of "Off-Label" Drugs


"This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II": Book Review by Guest Blogger Tammy


Changing Lives Naturally


Paramyotonia Congenita: Another Form Of Periodic Paralysis


New Discoveries


200 Members!!


A Reply to a Conversion Disorder Diagnosis by Guest Blogger Maureen


The Challenges of Periodic Paralysis by Guest Writer




Periodic Paralysis vs Cancer


Standard Healthy Eating Is Not Best For Individuals With PP


The Periodic Paralysis Network


Periodic Paralysis Network Diagnosis Project Part Two


Periodic Paralysis Network Diagnosis Project


Our Diagnostic Rights


The Five Stages of Loss in Chronic Illness


Clinical Diagnosis vs Genetic Diagnosis


Rare Disease Day!!!




Over 150 Members Now!!!


Metabolic Acidosis and pH Balance


Periodic Paralysis and Anesthesia


Some Forms of Periodic Paralysis are Worsened by Diamox


No Tourniquet Please!!!


Happy Anniversary to US!!!


The Truth About Diagnosing and Treating Periodic Paralysis


What is Normokalemic Periodic Paralysis?


My Story: How I Got My Diagnosis Of Periodic Paralysis


What is Periodic Paralysis?


A Message To Our Non-English Speaking Members


Dysautonomia and Periodic Paralysis


Isolated Diastolic Hypotension and High Pulse Pressure


What is an Ion Channelopathy?


Permanent Muscle Weakness in Periodic Paralysis...Continued


Permanent Muscle Weakness in Periodic Paralysis


What is Hypokalemic Periodic Paralysis?


The Effects Of Periodic Paralysis Cannot Be Minimized For Most Of Us


Periodic Paralysis and New Years Resolutions January 1, 2014


Happy New Year!!!! December 31, 2013


Monitoring Vital Signs For Individuals With Periodic Paralysis


Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).


Why We Should NOT TAKE DRUGS: Idiosyncratic and Paradoxical Reactions To Drugs


Finding a Doctor Who Cares


Periodic Paralysis and Metabolic Acidosis


What is Hyperkalemic Periodic Paralysis?


Hope For Individuals With Periodic Paralysis


Conversion Disorder vs Periodic Paralysis


What is Andersen-Tawil Syndrome?


What is Sotos Syndrome?


How Many People in the World Have Periodic Paralysis?


Avoiding the Pitfalls of the Emergency Room


Periodic Paralysis and the ERThe Narrative


When to Call For an Ambulance




Pharmaceuticals Are Not the Answer For Some Rare Diseases


Periodic Paralysis and Balance


Periodic Paralysis Diet


Periodic Paralysis and Iatrogenic Illness?


Walking the Tightrope Using The Plan


My Power Wheelchair


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


Emergency Instruction Chart


Episodes of Paralysis Continued


Episodes of Paralysis


Diagnosis Continued


The Diagnosis


Potassium and Potassium Meters


What is Periodic Paralysis??


Welcome to the world of Periodic Paralysis!

Our message has not changed in the past five years. We still hope to bring awareness and understanding of Periodic Paralysis to the world.  We will continue to add new articles as the need arises or as new information becomes available.

Until later...