Periodic Paralysis Introduction

>>continued from<<< Home Page

I have had episodes of partial and total paralysis for many years. During the episodes, my potassium shifts are low (hypokalemia), high (hyperkalemia) and within the normal ranges (normokalemia). Due to several misdiagnoses and a lack of proper diagnosis and treatment for over 50 years, I have become totally and permanently disabled with weak muscles throughout my body including those involved with my breathing and my heart. I must be on oxygen constantly and cannot exert myself in any way. I have had a heart loop monitor inserted in my chest to monitor the tachycardia and arrythmias which include long QT interval beats.

I've heard it referenced by some people with the disease, that Periodic Paralysis is our “friend”. I must disagree with this ideation. Periodic Paralysis is not our “friend”. After all, a friend does not leave you totally paralyzed. A friend does not leave you unable to walk. A friend does not leave you unable to talk. A friend does not leave you in fear. A friend does not take away your quality of life. We cannot treat it as our friend. We must treat Periodic Paralysis as an enemy that we must battle daily, minute by minute; second by second. By doing so, it is possible to keep our “foe” regulated in order to decrease the number and severity of paralytic episodes and the amount of possible permanent damage. We must walk a constant “tightrope” of sorts.

Although, I have become totally disabled, most people with the condition will not. With an early diagnosis and proper medical treatment, Periodic Paralysis can be managed and controlled fairly well. By educating ourselves and with much trial and error, my husband, Calvin and I have discovered and compiled a set of activities/tasks/steps which have helped me to finally control the episodes of paralysis. The components of the tasks are addressed below and will be expanded upon on this website and in the book I am writing.

Discover your triggers
Avoid your triggers
Monitor your vitals
(obtain medical equipment)
Gather together a team of medical specialists
(for diagnosis)
(for treatment)
(for follow-up)
Educate yourself
Join a Periodic Paralysis Community

There are many triggers that set the partial and total paralysis into motion. Once you discover these triggers, avoiding them will lessen the amount and severity of attacks. Triggers can include carbohydrates, meat, protein, salt, sugar, caffeine, medications, exercise, rest after exercise, sleep, stress (good or bad), dehydration and anything else you may discover if you keep a journal.

Avoid your triggers by following a proper ph balanced diet, to include no caffeine, salt, sugar or simple carbohydrates; eating from the farm; not the factory, a lack of medications (excluding the ones prescribed for the periodic paralysis); including over-the-counter medications, low stress, low exercise, plenty of rest, and staying well hydrated.

Diligently monitoring your vitals may assist you in keeping PP in check. Several pieces of medical equipment can be very handy for measuring your vitals. These include: a cardy meter, a finger pulse oximeter, blood sugar monitor, stethoscope, wrist blood pressure monitor, a thermometer and a digital ph balance reader. These items are necessary for caregivers to monitor you while in paralysis or for you to know which direction your potassium shifts for proper treatment.

A team of medical specialists is essential for diagnosing, treating and managing the symptoms. You are the team leader. Other team members include, but are not limited to, a neurologist to rule out anything neurological, a renal specialist for monitoring the kidneys and electrolytes, a cardiologist to oversee the heart issues and a primary care physician to coordinate the team. More specialists may include, endocrinologists, orthopedists, geneticists and internists. Other team members to consider are; physical therapists, occupational therapist, counselors, social workers, home health care, nurses and dieticians.

It is also necessary that you educate yourself, your family and your friends about every aspect of your condition. Knowing and understanding the syndrome will ease your fears and the fears of those around you and assist you with proper management and treatment. Knowing others will be able to aid you during paralysis episodes is essential.
Being part of a Periodic Paralysis community is vital. You will know you are not alone. You will receive encouragement, support, sympathy and empathy. You will gain information and knowledge from others who live with the same enemy daily. You will be able to ask questions and share ideas.

The information included in this Web site is intended for informational purposes only. We welcome everyone to share in the open and free exchange of knowledge and ideas without pre-conditions. All of the information and ideas originally produced by Periodic Paralysis Network and Rogue River Productions is protected under US.Copyright Laws.(2011)