This blog is designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel metabolic disorder. I have a variant of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetwork.com .
Tuesday, November 12, 2013
Welcome to the world of Periodic Paralysis!
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.
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 years ago, after suffering the effects of it nearly my
entire life and nearly dying from the wrong diagnoses and incorrect treatments
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 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 heart beats 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.
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
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.
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: