Serene Forest

Saturday, September 16, 2017

Hope And Living With Periodic Paralysis, A Chronic Illness

Hope And Living With Periodic Paralysis, A Chronic Illness

When asked the question, “What is something that encourages you to keep fighting, despite having, a chronic illness that left you hopeless?” I was eager to answer by telling my story.

In terms of my life with Andersen-Tawil Syndrome a form of Periodic Paralysis (PP), which is a very rare, debilitating metabolic chronic illness, 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 lost all hope 7 years ago. 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 every few months!

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 now have written four books and have created a forum to bring hope to others with Periodic Paralysis. We have a Support, Education and Advocacy Group, and several discussion groups. We have a blog with over 140 articles related to PP, a Facebook Page, and over 150 files filled with information to help others to manage their symptoms and improve the quality of their lives.

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 am encouraged and keep fighting for the members of our forum all around the world and those who will become our members in the future to provide them hope for a better quality of life through managing their symptoms with all natural methods. I remain hopeful that those with all forms of Periodic Paralysis can follow the all natural plan laid out in our books, 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 Group and to those who are reading our books. 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 and remain totally balanced, but we do not give up hope. For these reasons, I create posters with the word “hope” and share them daily on our PPN Support Group and our PPN Facebook Page.

Until later...

Tuesday, September 12, 2017

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

We at the Periodic Paralysis Network are now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 700 members worldwide!!!
The following are the services and features of our PPN forum:
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
Video about this Guide and Workbook:
"A Bill Of Rights For Periodic Paralysis Patients"
"What Is Periodic Paralysis?: A Disease Like No Other"
Our books are found on

PPN Blog:
We have over 140 blog articles written about all aspects of Periodic Paralysis.The Blog was created to provide information to all of our members, as well as, family members, friends and medical professionals who want to know more about Periodic Paralysis.
PPN Book Discussion Group:
We have a discussion board to discuss specifically the issues and aspects of Periodic Paralysis found in our books.
PPN Genealogy Discussion Group:
This group was designed for discussion and research into the genealogy of those families with Periodic Paralysis in the hopes of finding links and perhaps a new way to get a diagnosis.
PPNI Genetics Discussion and Research Group:
The Periodic Paralysis Network Inc. (PPNI) Genetics Discussion and Research Group is designed for discussion and research into the genetics of the many forms of Periodic Paralysis.
The PPN Learning Center and Workshop:
We have web cam or live video group sessions periodically for education, support and discussion. Please watch for announcements and invitations to RSVP.
Periodic Paralysis Caregivers:
The Periodic Paralysis Caregiver Group is designed to assist the caregivers of those individuals with Periodic Paralysis. This could include parents, children, siblings, friends, grandparents or anyone else who is responsible to care for anyone who has any form of Periodic Paralysis. This group is an extension of the Periodic Paralysis Support Group.
PP and Co-existing Conditions:
This group is designed for those who have Periodic Paralysis and other co-existing conditions. The PPN Support, Education and Advocacy Group is geared for discussions about Periodic Paralysis only.
PP Buddies (Support when in an emergency)
This 'PP Buddies Group' is designed for members of the PPN Support, Education and Advocacy Group. Anyone can join who may need help or assistance in the ER or in an emergency and anyone who would like to 'buddy with' or help them at those times. We do not want to see anyone who is frightened or new to PP, have to go through these experiences alone. Using IM, Chat, Skype or exchanging phone numbers ahead of time may be helpful.
PPN Website Facebook Page:
Our PPN Facebook Page is designed to share more general information and articles related to Periodic Paralysis, Chronic Illness and Invisible Illness. It is also designed to share with family members and friends to provide them with a better understanding about PP, chronic and invisible illness.
PPN Author's Page:
Fun posts shared relating to writing and reading books.
Video about Periodic Paralysis:
(I am not good at Twitter..let me know if you would like to help with this.)
Periodic Paralysis World Awareness Day Page:
This page was created to bring awareness to the world about Periodic Paralysis. We have declared and observe 'Periodic Paralysis World Awareness Day' February 7th each year!
Please check out our PPN Members World Map:
Let us know if you want to be added to our map!
Thank you all for your support
Calvin Hunter and Susan Q. Knittle-Hunter
Co-Founders, Co-Creators, Co-Managers
Periodic Paralysis Network, Inc.
Sequim, Washington U.S.A.
All rights reserved. copyright © 2013 Periodic Paralysis Network

Wednesday, September 6, 2017

RARE Champion of Hope Award

Hello All,
Yesterday I received a surprise in the mail. I received a letter and small gift from Global Genes, a leading global rare disease advocacy organization. I had been nominated for being deserving of recognition of extraordinary efforts in rare disease (Periodic Paralysis)!! I did not win the RARE Champion of Hope award but I was recognized with a token (a book mark) as a 2017 nominee.
I want to thank whoever it was that nominated me. Thank you so much. I was very surprised and humbled by this.
It was great to have AWARENESS brought to Periodic Paralysis!!!