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The Battle Against Periodic Paralysis by Kelli Bosarge .pdf



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The Battle Against Periodic Paralysis
Spotlight on a Rare and Complex Disease
By Kelli Bosarge
Imagine yourself hanging out with friends, shopping at the local mall. All of a sudden, for no reason that you are aware of, your legs
become so heavy that you can no longer pick them up to take another step. Your friends think you are joking, but you're not.
Or perhaps, picture yourself at a birthday pool party. Surrounded by family excitement, the summer sun, and plenty of junk food, you
begin to experience severe dizziness accompanied by debilitating weakness in your entire body. Your family is baffled by your
sudden impairment and have no idea why you're being so dramatic or what to do to help.
Last but not least, let's say you are in a well air-conditioned home, washing dishes at the kitchen sink. Within five minutes, your
limbs begin to cramp and go numb. You stop what you're doing and barely make it to your bedroom before collapsing into bed. After
a power nap spawned by pure exhaustion, you wake up and cannot move your body at all. With no other choice, you lay there until
you are able to get up...however long that may be.
These scenarios sound like a fictional medical drama, but they are all too real to someone with the systemic disease Familial
Periodic Paralysis. A rare genetic condition, Periodic Paralysis is a complex and widely misunderstood beast. The only way for
someone who does not have Periodic Paralysis to grasp the concept is to explain to them the process, symptoms, triggers,
treatment, and solutions for care and quality of life.
The Gale Encyclopedia of Neurological Disorders describes the Periodic Paralyses as "several rare, inherited muscle disorders
marked by temporary weakness" (656). According to Periodic Paralysis International, these episodes can last anywhere from a few
minutes to many days, and repeated periods of weakness can eventually result in loss of overall muscle strength (hkpp.org). It is an
autosomal dominant ion channelopathy, which means the condition passes down from parent to child in most cases, however some
patients' family history is undetermined (hkpp.org).
There are four primary types of Periodic Paralysis, all with various symptoms, triggers, and treatments. The most common form is
Hypokalemic Periodic Paralysis (hkpp.org). Hypokalemic Periodic Paralysis results from an inconsistent shift in potassium from your
bloodstream into your muscle cells (hkpp.org). This causes serum potassium levels to drop, and incorrect polarization occurs inside
the muscle membrane (hkpp.org). This bizarre imbalance "paralyzes" the affected muscles, which of course prevents you from using
them (hkpp.org).
In Hyperkalemic Periodic Paralysis, there is an upward shift of potassium in your bloodstream caused by potassium improperly
finding its way out of your muscle cells (hkpp.org). This also creates an imbalanced ratio and results in periods of weakness that are
accompanied by prolonged muscle contractions (hkpp.org).
A related form of Periodic Paralysis, Paramyotonia Congenita, is often considered a branch of Hyperkalemic Periodic Paralysis, as it
is also defined by sustained muscle tensing, called myotonia, that prevents your muscles from relaxing normally (nih.gov).
These three conditions are very uncommon; however, one form of Periodic Paralysis is so rare, it is nearly unheard of. If you have
Andersen-Tawil Syndrome, you are one in a million. Or one in quite a few million, to be more accurate, as "only a few hundred
families in the world" have reported the condition (hkpp.org). If you are one of the chosen few with Andersen-Tawil Syndrome, you
experience acute attacks of weakness, paralysis, and dangerous heart arrhythmia when potassium levels shift (hkpp.org). It is also
likely that you are shorter than average, and were born with unusual skeletal features of the ears, eyes, teeth, spine, fingers, and
toes as well (hkpp.org).
What is life like with Periodic Paralysis? What are the most prominent symptoms of this rare disorder? Jon Udall of Birmingham, U.K.
was diagnosed with Paramyotonia Congenita after experiencing episodes of muscle weakness and stiffness. Concerning the
myotonia, Jon explains "The muscles take longer to de-contract" (Udall). The same is the case if you have Hyperkalemic Periodic
Paralysis. If your potassium level rises, even so slightly that it is barely noticeable, you may become stiff, weak, or temporarily
paralyzed, according to Genetics Home Reference on the National Institute of Health website (nih.gov). These episodes may
involve the entire body or only one part, and usually last no longer than a couple of hours (hkpp.org).
For Susan Knittle-Hunter of Oregon, who suffers from Andersen-Tawil Syndrome, the symptoms are extreme and include heart
arrhythmia, Long QT Interval heartbeats, abnormal T waves, Angina and fluctuating heart rates (Knittle-Hunter). Knittle-Hunter also
deals with frequent episodes in which she is paralyzed "head to toe" (Knittle-Hunter). This leaves her unable to move, speak,
breathe properly, or open her eyes (Knittle-Hunter). She makes it clear, however, that she can still hear and she remains conscious
throughout the ordeal (Knittle-Hunter).

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Life is no less difficult if you have Hypokalemic Periodic Paralysis, as muscle weakness and paralytic episodes leave you
unexpectedly helpless. Genetics Home Reference on the National Institute of Health website states "Attacks cause severe
weakness or paralysis that usually lasts from hours to days. Some people may have episodes almost every day, while others
experience them weekly, monthly, or only rarely" (ghr.nlm.nih.gov). Limbs are most often the weakest, but your entire body can be
affected (hkpp.org). While not common, there is a chance that you will have trouble breathing and swallowing, which is potentially
life-threatening (hkpp.org). You may or may not experience pain during and/or after the onset of an episode, but as per Periodic
Paralysis International, you may find yourself in what is called an abortive attack (hkpp.org). This is a period of prolonged weakness
that you might consider more debilitating than temporary acute paralysis, since abortive attacks last for weeks or even months at a
time (hkpp.org).
As if these frightening symptoms aren't enough to deal with, you are also at risk of becoming weaker as the years go by, and it is
quite possible that you will face permanent disability, especially if attacks are strong and frequent (nih.gov). But for some patients,
Periodic Paralysis is just that - periodic - and your body may recover between attacks (hkpp.org). This highly unpredictable chaos is
undoubtedly a frustrating and exhausting situation for you, and a very confusing one for those around you.
There are quite a few factors to consider concerning the onset of episodic weakness and paralysis. It is clear that potassium is the
focus of your condition and that it boils down to it moving into the wrong place at the wrong time, but what triggers these horrendous
events? One of the most common causes of a paralytic attack is physical activity (hkpp.org). Due to depolarization caused by
incorrect balance of potassium in the muscle membrane, your muscles do not respond properly (hkpp.org). In fact, the more
movement that you attempt at times, the less they work (hkpp.org). As one patient describes in her journal, "It's like trying to force
two of the same magnets together...they don't come together, they rebel" (gulf-coast-girl.blogspot.com). So if you were to go for a
jog, the repetitive muscle movement would possibly result in an episode of weakness, most likely upon halting the movement. This
trigger is most often referred to as "rest after exercise" (nih.gov).
Jogging is only one of countless examples, unfortunately, and the exercise doesn't necessarily have to be strenuous to cause a
problem. In Muscular Dystrophy Association's Quest Magazine, one patient shares that using a potato peeler causes her hand to
paralyze, while another laments that he loses strength when trying to play his guitar (quest.mda.org). It is safe to say, then, that any
repetitive muscle activity can be a culprit.
Besides movement, there are many other triggers of Periodic Paralysis, depending on which type you have. In Brain, a journal of
Neurology published by Oxford Journals, episodes in those with Andersen-Tawil or Hypokalemic Periodic Paralysis can be brought
on by any kind of stress, viruses, the menstrual cycle, sleeplessness, and foods that are high in carbohydrates and sodium
(brain.oxfordjournals.org). Certain drugs, such as steroids, insulin, adrenaline, and beta blockers can also produce a Hypokalemic
attack (brain.oxfordjournals.org). If you're a Hyperkalemic patient, potassium is the enemy, as is stress, cold, and fatigue
(brain.oxfordjournals.org). Jon Udall states that you may experience attacks of Paramyotonia Congenita if your muscles are too cold,
or upon "repeated actions such as clenching a fist over and over again or blinking quickly for a while" (Udall). Potassium-rich foods
are also a problem for those with Paramyotonia Congenita (hkpp.org).
Such a difficult condition can no doubt make you feel helpless, but there are some treatments and suggestions out there to help you
manage your symptoms. Udall has found that wearing warm clothing and exercising carefully but frequently has helped him maintain
control of Paramyotonia Congenita (Udall). He suggests not overdoing it and avoiding repetitive movements, but making some form
of muscle activity a regular part of your lifestyle due to the fact that symptoms seem to be more severe after prolonged breaks
between activity (Udall).
Susan Knittle-Hunter, on the other hand, must handle Andersen-Tawil Syndrome by not exercising, as well as avoiding stress as
much as possible, following a proper diet of fresh, unprocessed foods, staying hydrated, getting enough sleep, and keeping a close
eye on vital signs and potassium levels (Knittle-Hunter).
Say hello to sweet and salty foods if you are Hyperkalemic, because they are the most efficient way to prevent and recover from
attacks according to Periodic Paralysis International (hkpp.org).
If you have Hypokalemic attacks, however, no french fries for you, as you want to avoid salt and heavy carbohydrates like the
plague (hkpp.org). It is also wise to limit activity, avoid stress, and keep your muscles at a comfortable temperature (hkpp.org). You
will most likely be prescribed high doses of potassium, and your physician may consider diuretics (especially potassium-sparing
ones) to help rid the body of excess sodium in an attempt to allow the potassium to better do its job (hkpp.org). Finally, it is worth
noting that despite the popular idea that bananas are a cure-all for potassium deficiencies, they are not recommended to patients
with Hypokalemic Periodic Paralysis due to their heavy carbohydrate load, and have been reported by some to do more harm than
good (fightinghkpp.blogspot.com).
The prognosis of Periodic Paralysis varies tremendously. Paramyotonia Congenita is usually diagnosed early in life, and does not
get worse over time (hkpp.org). Andersen-Tawil, Hypokalemic, and Hyperkalemic Periodic Paralysis are a much different story. You
may be one of the lucky ones and manage well with few symptoms, or your condition may progress over time until you are
completely disabled and in need of day-to-day assistance (hkpp.org). Based on the accounts of members of the Periodic Paralysis
Association email support group, many appear to be somewhere in between (periodicparalysis.org). In the most severe cases,
serious episodes result in fatality due to respiratory or cardiac arrest (hkpp.org).

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Living with an incurable and unpredictable disease such as Periodic Paralysis not only puts your physical well-being in dire straits, it
may also weigh heavy on your heart. That is why it is important to reach out to others for support. Physicians at the Periodic
Paralysis Association and Periodic Paralysis International have joined forces to bring education and understanding to the public
world-wide (periodicparalysis.org). The Muscular Dystrophy Association is also on board, conducting research and offering support
to patients through their clinics in various parts of North America (MDA.org).
Unfortunately, the condition is still terribly misunderstood among the medical community, and patients such as Susan Knittle-Hunter
are too often not treated properly due to the error of medical personnel. Knittle-Hunter recalls being wronged by doctors many times
due to their lack of knowledge about her condition (Knittle-Hunter). She longs for the day when the word is out far and wide, "I would
love to see medical professionals be more trained and educated about the Periodic Paralysis diseases. No one should have to have
been treated as poorly as I have been and have to have become so disabled due to the misdiagnoses and mistreatment with the
wrong medications as I have been" (Knittle-Hunter). Knittle-Hunter's story is not uncommon among those who suffer from Periodic
Paralysis. Concerning an emergency room visit involving a debilitating episode, another patient writes in her blog, "I was jabbed
repeatedly in the chest, screamed at, mocked, called a fake, accused of drug seeking...I have yet to get over it"
(fightinghkpp.blogspot.com).
What can you do when face-to-face with people who fail to understand what is happening? Periodic Paralysis International suggests
their printer-friendly articles, research, and treatment information, which should be respected by everyone, including medical care
facilities (hkpp.org). It is also vital that family and friends, especially caregivers, are educated to fully understand what is happening
to you and what can be done, together, to cope with all circumstances (hkpp.org). Support groups, counseling, and working
collectively on striving for quality of life may help both you and your loved ones (hkpp.org).
If you suffer from one of the Familial Periodic Paralyses, you may at times feel painfully alone, but you're not. Understanding how
this complex disease works and what can be done to control and cope with it is the key to wellness. By educating yourself and those
around you, implementing medical advice to the best of your ability, and seeking support and quality of life with an open mind, the
battle against Periodic Paralysis can be a challenging, yet hopeful one.
References:
"Periodic Paralysis" The Gale Encyclopedia of Neurological Disorders. 2nd vol. Michigan: Thomson Gale, 2005. 656. Print.
Venance, S.L. "The primary periodic paralyses: diagnosis, pathogenesis and treatment." Brain. Jan 2006. 129. 8-17. Web. 21 Apr
2012.
Wahl, Margaret. "Periodic Paralysis Brings Frustration, Misunderstanding, But Can Be Managed." Quest. Muscular Dystrophy
Association. June 1998. Web. 21 Apr 2012
Wahl, Margaret. "PP: It's All In The Muscles, Not The Head." Quest. Muscular Dystrophy Association. July 2009. Web. 21 Apr 2012
"Hypokalemic Periodic Paralysis" Genetics Home Reference. National Institute of Health. Apr. 2007. Web. 22 Apr. 2012
"Hyperkalemic Periodic Paralysis" Genetics Home Reference. National Institute of Health. Apr. 2007. Web. 22 Apr. 2012
"Paramyotonia Congenita" Genetics Home Reference. National Institute of Health. Apr. 2007. Web. 22 Apr. 2012
"What Is Periodic Paralysis?" Periodic Paralysis International. Periodic Paralysis International. 21 June 2011. Web. 22 Apr. 2012
"Andersen-Tawil Syndrome FAQ." Periodic Paralysis International. Periodic Paralysis International. 25 June 2011. Web. 22 Apr. 2012
"Hyperkalemic Periodic Paralysis FAQ." Periodic Paralysis International. Periodic Paralysis International. 25 June 2011. Web. 22
Apr. 2012
"Hypokalemic Periodic Paralysis FAQ." Periodic Paralysis International. Periodic Paralysis International. 21 June 2011. Web. 22 Apr.
2012
"Paramyotonia Congenita FAQ." Periodic Paralysis International. Periodic Paralysis International. 25 June 2011. Web. 22 Apr. 2012
"The Abortive Attack - Weakness Between Attacks." Periodic Paralysis International. Periodic Paralysis International. 27 June 2011.
Web. 22 Apr. 2012
"Some Words For The Family." Periodic Paralysis International. Periodic Paralysis International. 6 July 2011. Web. 22 Apr. 2012
Periodic Paralysis Association. Periodic Paralysis Association. 26 Feb. 2010. Web. 22 Apr. 2012

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"Life With Periodic Paralysis." My Roller Coaster Life. n.p. 20 Nov. 2009. Web. 22 Apr. 2012
"One Year Ago." The Fight Against Hypokalemic Periodic Paralysis. n.p. 10 Apr. 2012 Web. 22 Apr. 2012
"No, Dear, I Will Not Eat More Bananas." The Fight Against Hypokalemic Periodic Paralysis. n.p. 10 Apr. 2012 Web. 22 Apr. 2012
Udall, Jon. Personal Interview. 14 Apr 2012
Knittle-Hunter, Susan Q. Personal Interview. 16 Apr 2012

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