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...

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