Hello All,
Today
I wanted to share our big news and give a little bit of background information
into our organization, which is now formally a corporation. I would like to
share our story.
After
a lifetime of illness, misdiagnoses and medical mistreatment (some of which
caused irreparable damage), three and one-half years ago at the age of sixty
two, 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 conditions and diseases. I had to look
for the “zebra”, as one of the over thirty doctors I had seen over the prior
six years had called it and I had to do
it myself.
Once I realized that I had a form of Periodic Paralysis, I researched everything I could find about it and set out to get a diagnosis. The little information I found on-line was scattered and difficult to understand. I joined the few support groups and listservs available at the time but found them lacking in any kind of real support, information and absolutely no advocacy. In fact I was met with resistance. When I finally got diagnosed with Andersen-Tawil Syndrome, I was actually scoffed at because my diagnosis was not genetic.
The story of my diagnosis is long and involved, but Calvin, my husband, and I did manage to secure a diagnosis after unbelievable resistance and much work on our part.
During
that time, I continued to decline as I had more and more severe total paralytic
episodes. I had tachycardia and palpitations of my heart and I was having
difficulty breathing. Sometimes my breathing would actually stop for a few
seconds at a time. It felt like an elephant sitting on my chest. It was very
frightening. Soon the difficulty of taking breaths in and out began to happen
when I was not in paralysis. I found it more and more difficult to breathe.
Every time I stood up, ate a meal or exerted myself in anyway, the breathing
got worse and my heart would speed up even while I was eating.
After
my diagnosis in 2011, many doctors, including the specialists, told me that
there was nothing they could do for me. I could take no medications nor could I
have any type of surgery. I was dying from the lifelong effects of the
condition and the wrong treatment and drugs I had been given over the years.
After hearing this, the only thing Calvin had, nearly four years
ago was hope and determination and a will to find a way to save my life.
I would be dead now if it were not for his persistent 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 four or five full body attacks a day lasting
several hours at a time, to one every two or three months!
After
being ignored by the on-line doctors and being treated in such a despicable and
unconscionable manner by members of the listserv and other support groups, I
vowed to create my own website to help others with all forms of Periodic
Paralysis and to treat the individuals in a manner that I wish I had been treated
and to share what we had learned and most of all to give them hope. Calvin and
I created, founded and managed the Periodic Paralysis Network. We started as a
simple website with a simple discussion group and have grown into a corporation
with an online community of nearly 300 individuals who are affected by Periodic
Paralysis from all over the world. We were finally able to incorporate and are
now the Periodic Paralysis Network, Inc. (PPNI)
The focus of our corporation 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 are a patient-safety-related organization and advocate for our members all over the world. We provide hope through education of all issues related to Periodic Paralysis, open and free discussion of thoughts and ideas, encouragement, support, sympathy, empathy, validation and advocacy. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members ask questions and share ideas and support. We are usually on in real time, answering questions and providing support as needed for our members.
We provide hope to individuals with various forms of Periodic Paralysis through support, education and advocacy. We have a website, a blog and a forum with three distinct discussion groups, and a book, “living with Periodic Paralysis” and other educational activities.
1.
Please visit our “Periodic Paralysis Network, Inc Website” at:
2.
Please visit our "Living With Periodic Paralysis Blog." Information
is shared in articles about all aspects of Periodic Paralysis. It has a
translator so those from all over the world may read and understand each
article.
3.
We have a support group the "Periodic Paralysis Network Support, Education
and Advocacy Group" at:
Our
focus is on educational resources and self-reliance. Our approach to treatment
focuses on the self-monitoring of vitals and the management of symptoms through
natural methods such as the elimination of triggers and awareness of proper
nutrition and supplementation. This approach evolved from the inability of the
medical community to provide appropriate and safe medical diagnosis and
treatment. We continue to do research and provide the latest information to our
members.
Members
on this board can engage in an open discussion of any topic of interest
pertaining to various aspects of Periodic Paralysis. This group is closed to
public view for privacy sake. We hope you will participate in the discussions
and like us, continue to grow from the experience.
4.
We have a discussion group called "Periodic Paralysis Network Genealogy
Discussion Group" at:
It was designed for discussion and research into the
genealogy of those families with Periodic Paralysis. It is my belief that
through this research many of us with an as yet unnamed genetic mutation may be
able to find a connection, which may lead us to the ancestor and family line
from which the Periodic Paralysis originates. By doing so, we will be able to
find and help others who may also carry the mutation and we can learn more
about it and how it is passed. With this information, we can create another way
to diagnose this condition in certain families.
5.
We have written a book called "living with Periodic Paralysis: The Mystery
Unraveled". In it, we share my story of near death due to misdiagnoses and
improper treatment of this mysterious disease and hope through natural
management techniques. We bring awareness of Periodic Paralysis to others who
may have it and to doctors for more timely recognition, diagnosing and correct
treatment. Our book highlights problems within the medical system today and
shares insight into the social and psychological aspects of living with a rare,
chronic and progressive disease. It is available to purchase on our website at:
6.
We have a discussion group the "Periodic Paralysis Network" to
discuss specifically the issues and aspects of Periodic Paralysis from the book
at:
7.
We have web cam group sessions periodically for support, education, advocacy
and discussion.
8. We have the “Periodic Paralysis Network, Inc
Facebook Page”:
9.
We also have the Periodic Paralysis Network, Inc
Author's Facebook Page:
10.
Please visit our Periodic Paralysis Network Members World Map:
Our
Mission Statement:
The Periodic Paralysis Network exists to assist individuals who have Periodic Paralysis with support, education and advocacy and by providing them with a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting their caregivers and family members.
In the next few months you may notice some changes in design on our website, blog, and groups. Calvin is creating a new logo. Our second book, a user-friendly workbook, is nearly finished and we hope to publish it before the end of the year. We are also working on some fund-raiser ideas. We hope to raise money to cover the costs of putting our books in the hands of doctors, ER’s, EMT's, nurses, libraries, medical schools, nursing schools and more.
Thank you all for your support!!
Until later...
Great news! Congratulations Susan and Calvin. You are periodic paralysis heroes.
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