Living with Periodic Paralysis: The Blog

This blog was created and designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel mineral metabolic disorder. I have two variants 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.periodicparalysisnetworkinc.com .

Sunday, December 29, 2013

Monitoring Vital Signs For Individuals With Periodic Paralysis

Monitoring Vital Signs For Individuals With Periodic Paralysis

This morning, one of our Support Group members told us that she has ordered a potassium reader as a Christmas present to herself. She is assembling an “emergency kit.” Having several medical devices gathered for use during paralytic episodes is an important issue for individuals with Periodic Paralysis, their family members and/or caregivers. It is essential to have everything ready when needed. Taking the "guessing" or the "unknown" out of the equation makes a very big difference for everyone concerned.

As I discussed in some of my previous blogs, Periodic Paralysis (PP) is a very rare mineral metabolic disorder. Individuals with various forms of PP suffer the effects of partial or full body muscle weakness or paralysis, which may be accompanied by very serious symptoms. 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. 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 monitor the vitals of the individual during an episode.

Monitoring the vital signs diligently is the most important way to manage the serious complications. Most people in full body paralysis are unable to describe how they are feeling or what is happening to them, so there is only one way for sure to know how the body is functioning; using medical devices to measure things such as oxygen level, body temperature, blood pressure, heart and breathing rates, potassium levels, pH levels and blood sugar levels. If someone can describe how they are feeling, it is still impossible to know what is going on inside the body on a cellular level. It can be unsafe to make decisions about interventions without the correct information. Guessing about the intervention could trigger serious and/or life-threatening conditions. Avoiding calling for an ambulance every time a paralytic episode occurs, is another benefit to being prepared with a collection of medical devices for measuring vital signs. Going to the hospital is stressful, expensive and unnecessary in most cases, as well as possibly life-threatening if the medical professionals are not familiar with Periodic Paralysis.

Several pieces of medical equipment can be very handy for measuring your vitals. These include: a potassium meter, a finger pulse oximeter, blood sugar monitor, stethoscope or EMAY handheld heart monitor, wrist blood pressure monitor, a thermometer and pH test paper strips. These items are necessary for caregivers to monitor vitals primarily because the person in paralysis is unable to communicate. The vitals serve as the communication tool. Keeping written records is very important especially when making connections between individual events.

The same holds true for the measurement and recording of other vitals such as blood pressure, temperature, blood sugar levels, oxygen levels, respiration, heart rate and the input and output of fluids.

Potassium Meter

There are two types of potassium meters, however, one has been discontinued. Neither one is a medical device. This means medical insurance will not pay for them and they are very expensive. The newest one is easier to use but costs about $350.00. It measures the potassium level in either the blood or the saliva. Using one of these little devices will give one a baseline for their normal levels and for when their potassium is high or low. We now know that most of us who have various forms of Periodic Paralysis have our own level of normal and our own unique level of what is high or low for us as an individual. Keeping record of our findings is very important. Although not recognized by many doctors, some are willing to recognize their worth and rely on the findings. During an episode, one’s potassium levels can be checked as often as possible or needed. Caregivers can decide how to proceed if the levels are too high or too low.

Digital Oximeter

The digital oximeter is a small and inexpensive device, which is placed on the tip of a finger. It reads the oxygen level in our blood. This is important, because when in paralysis, our oxygen levels may drop. If oxygen levels dip too low and oxygen is not handy, it can indicate that an ambulance may need to be called. The device also displays the heart rate. The caregivers will know if the patient is in tachycardia (fast) or bradycardia (slow) heart rate. The intensity of the heartbeat is also displayed and can indicate arrhythmia (irregular heart beat).

pH test paper strips

Because Periodic Paralysis is a mineral metabolic disorder, individuals with PP are prone to developing metabolic acidosis (too much acidity) or metabolic alkalosis (too much alkalinity) in their blood. These are serious conditions and can be life threatening. These paper strips easily and quickly measure for pH imbalance.

Blood Sugar/Glucose Meter

These devices are readily available. Though used normally for individuals with diabetes or hypoglycemia, the meters are important devices for those with PP. Having high sugar levels may trigger an episode. When the body stresses during an episode, sugar levels may rise. If the sugar moves with the potassium, it may cause pain. The stick for pricking the finger may also be used with the potassium reader.

Wrist Blood Pressure Cuff

Knowing the patients blood pressure is extremely important. The levels may get dangerously low or high and indicate the need for an ambulance. These devices also display the heart rate and arrhythmia. Having it on the wrist is so much easier than trying to use the older methods and tools for measuring blood pressure.

Digital Thermometer

The digital thermometer, which can be used in the ear, is a good choice. It is easy and quick to use. If someone with PP has an infection in his or her body, this can trigger an episode. This information may be useful to the caregiver.

Stethoscope or EMAY Heart Monitor

Due to the serious nature of irregular heartbeats, a stethoscope can be an important tool to have handy. If the wrist blood pressure cuff or the digital oximeter indicates irregular heartbeats, the caregiver can then listen to try to detect them and decide how serious they may be. without experience in recognizing arrhythmia, a new handheld heart monitor made by EMAY is a nice option with quick and easy results instantly. They are quite reasonable in cost at under $100.00.

With all of the tools in place and diligently recording the results, there is no more guessing. The caregivers are informed and can easily relax knowing precisely what is happening. As they take the measurements and record the results, they can tell the patient exactly what is happening. The patient can then relax, knowing they are out of danger. If, on the other hand, the results indicate an emergency situation, an ambulance can be called or the caregiver will know what to do and the patient will know that help is on the way. In conclusion, taking the "guessing" or the "unknown" out of the equation makes a very big difference for everyone concerned.

Video: http://www.youtube.com/watch?v=zqbcovGVHKw (Older video)