Emergency Instruction Chart

Hello All,

 

The fog and shades of gray lingered through the day yesterday, as well as breathing issues, fatigue and weakness. I did, however, manage to write another blog; translate some conversations in Russian and Spanish; congratulate someone on their genetic diagnosis; work on our survey; pass along information for caregivers; support someone who cannot get a diagnosis; encourage someone, and his caregiver, who is struggling physically while attempting to taper off of harmful medications wrongly prescribed, as he is attempting to get a diagnosis; setting up some technical things for the blog; research more ways to spread the word about Periodic Paralysis; help Calvin make a pot of vegetable soup, from my recliner; researched pure supplements for myself to deal with my exercise intolerance and finally sent a message to Barrack Obama, the President of the US, during a live phone chat session about the Affordable Care Act, seeking help for those of us with Periodic Paralysis. Wow! It is time for me to take a break. Maybe I will begin to feel better if I rest a little more.

The subject for today’s blog is a continuation of the past two days, understanding “episodes”. For those who go into full-body paralysis and are unable to speak, you may find yourself alone when an attack ensues. It is wise to have information, which can be easily seen for your caregivers or first responders. One of our members, who lives alone, shared a list of instructions she has posted on her bedroom door. I used her idea to create one for myself and my particular needs.

 

Although, Calvin is usually with me, the day may come when he may not be able to be with me or he may be unable to speak or just in case he needs reminding during the stress of an emergency situation. The following is my “Emergency Instruction Chart”:

My name is Susan. I am 72 years old and I have a very rare disease called Period Paralysis. The type I have is Andersen-Tawil Syndrome (ATS).

Potassium shifts in my body if I am hypokalemic, hyperkalemic or normokalemic. I become totally paralyzed when the potassium shifts from my organs and goes into my muscles. I am unable to move in any way and am not able to speak or open my eyes. I look like I am asleep, BUT, I can hear everything going on around me. I can hear everything being said.

I may be able to move my index finger on my right hand. If you ask “yes” or “no” questions, I may be able to answer. Up and down is “yes” and sideways is “no”.

My husband, Calvin, knows exactly what to do for me, so listen carefully to what he says and follow his directions. If he is not with me or is unable to speak or help me please follow the outline below:

If I must go to a hospital take me to Valley Medical Center. My doctors are:

1. Dr          PCP                            541-
2. Dr.         Neurologist                 541-
3. Dr.         Cardiologist                541-
4. Dr.         Renal Specialist         541-
   

• Please talk to me and tell me what you are doing to me and for me.
• Please make sure I am comfortable.
• Please make sure I am reclining but not lying flat.
• Please be sure my oxygen is on and working.
• Please cover me with a light sheet or blanket because I get cold.
• Please make sure my head and neck are supported. My head will fall to the side and can hurt a great deal.
• Please do not try to move me when I am paralyzed. Damage can occur to my muscles and joints.
• Please do not put me on an IV. I cannot have saline or glucose…if one must be used, very diluted mannitol may be okay.
• Please do not give me any medications of any kind to include antibiotics.
• Please do not give me any type of anesthesia, to include lidocaine.
• Please do not use a tourniquet if blood is to be taken to check my potassium levels.
• Please do not put any food or liquid in my mouth, I will choke because I cannot swallow.
• Please watch my breathing it may stop or be very shallow.
• Please watch my swallowing. I may choke.
• Please monitor my heart. I have a heart loop monitor in my chest. I have long QT interval beats, arrhythmia, tachycardia, bradycardia and my heart may stop beating. I may go into cardiac arrest.
• Please do not be alarmed if I have myoclonic jerks or fasciculations. It may mean that I am hyperkalemic, and is not a seizure.
• Please have patience. I will come out of it eventually. It may last 15 minutes to several hours or I may go in and out of it.
• Please be ready with a bedpan or be ready to help me to the bathroom. I will have to urinate urgently after I come out of it, but will still be too weak to walk by myself to the bathroom.
  
  Thank you!

 Other conditions: Type 2 Diabetes; Fibromyalgia; severe osteoporosis (bone crush of spine); Heart Arrhhythmias: PVC’s, PAC’s PJC’s, Errants, ST Segment Abnormalities, Long QT interval, Non-conducted PAC’s, Abnormal T waves and Angina; Small Vessel Ischemia of the brain; Degenerative Disk Disease; Diverticulitis; Arthritis of the spine; Acid Reflux; Hiatal Hernia; High Cholesterol/Triglycerides; Restless Leg Syndrome; Muscle Myopathy, Exercise Intolerance, TIA.

  

I have a Medtronic Reveal XT Heart Loop Monitor implanted in my chest…do not give me an MRI

My Medications: Potassium Bicarbonate as needed, Oxygen Therapy 2liters 24/7

       

Address

Phone number

DOB

Emergency Contact 
You can use this as an outline for your specific needs.

 I have this posted on our refrigerator, one in our car visor clearly labeled with “First Responders,” one in my purse, a few copies in the medical file we take with us wherever we go and one made to wear around my neck as necessary. I fold the paper and place it in a plastic name tag holder on a chain or other type of necklace.

 

I hope this has been helpful.

Until later…

Episodes of Paralysis Continued

Hello All,

Yesterday, I came out of my "abortive" attack and actually had a few hours of feeling well; “my” well; clear headed, everything had color again, ability to move more than my fingers, ability to speak without getting out of breath, less fatigue, looking forward to and discussing the future. It does not happen very often, anymore, but when it does I enjoy every second of it. Usually, I will over do and push myself to “catch up” on things long neglected, but I did not do that yesterday. However, just before going to bed, it hit me again. They fog and shades of gray returned. Most of the night I was in paralysis and having problems breathing. I am still having problems taking in deep breaths as I am typing.

The blog I wrote yesterday was about episodes of paralysis and today I wanted to add more information about what happens during an episode depending on the cause and potassium levels.

To review, yesterday, I explained that not everyone with Periodic Paralysis will experience full-body paralysis. In fact most episodes are bouts of muscle weakness. Many things, including some food, exercise, some medications and even sleep, trigger the attacks. During an episode serious arrhythmia or breathing problems may ensue. Death may actually occur from respiratory or cardiac arrest, so it is best to avoid having an attack by avoiding triggers. I added a narrative I wrote several years ago, describing such an event before I really knew what was happening.

In previous posts I described the known forms of Periodic Paralysis (PP). They are Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis, Normokalemic Periodic Paralysis, and Andersen-Tawil Syndrome. (Thyrotoxic Periodic Paralysis is not included because it is a condition which develops suddenly related to a problem with the thyroid and can be treated and possibly cured with surgery).

Below is the description of each type with the Periodic Paralysis and symptoms, which can occur depending on the level of potassium. It must be noted here that each person’s level of “normal” potassium among individual’s with PP may vary from person to person. So these symptoms may develop at a different range of numbers depending on an individual basis.

Hypokalemic Periodic Paralysis (Hypo PP): Paralysis results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium (hypokalemia) during paralytic episodes.

The symptoms typical of low potassium:

If an individual has Hypokalemic Periodic Paralysis and potassium shifts into lower ranges, he or she can and will experience a combination of the same myriad of symptoms as well as paralysis and it can be equally as dangerous and deadly.

When potassium levels are low which is usually between 2.5 to 3.5 mEq/L, the following symptoms can occur: tiredness, pain in the muscles, cramping, upset stomach, constipation, lightheadedness, depression, mood swings.

Potassium levels below 2.5 mEq/L affect many functions of the body including the muscles, digestion, kidneys, electrolyte balance, the liver and the heart.

(The highs and lows of potassium may be different for each individual)

Muscles: fatigue, pain in the joints, muscle weakness, muscle weakness after exercise, muscle stiffness, muscle aches, muscle cramps, muscle contractions, muscle spasms, muscle tenderness, pins and needles sensation, eyelid myotonia (cannot open eyelid after opening and then closing them).

 Digestion: Upset stomach, loss of appetite, vomiting, constipation, diarrhea, bloating of the stomach and full feeling in the stomach, blockage in the intestines called paralytic ileus.

 Heart: Anxiousness, irregular and rapid heartbeat, angina, prominent U waves, inverted or flattened T waves, ST depression, elongated PR interval.

Kidneys: Severe thirst, increased urination, difficulty breathing, too slow or shallow breathing, lack of oxygen in the blood, sweating, increased blood pressure, metabolic acidosis.

 Liver: The brain function becomes affected: Irritability, decrease in concentration, lack of clear thinking, confusion, slurring of speech, seizures.

Paralysis: Episodic muscle weakness, episodic partial paralysis, episodic total paralysis episodic flaccid paralysis (limp muscles, without tone).

 Laboratory blood changes: Increased number of neutrophils in blood, increased number of white blood cells in the blood, reduced number of eosinophils in blood, increased number of lymphocytes in blood, low blood sodium, low blood potassium, elevated Serum CPK (creatine).

Hyperkalemic Periodic Paralysis (Hyper PP): Paralysis results from problems with the way the body controls sodium and potassium levels in cells. It is associated with high levels of potassium (hyperkalemia) during paralytic episodes.

 
The symptoms typical of high potassium:

When potassium levels are at a slightly elevated level there may be no symptoms. At a moderately higher level, which is usually between 5.5 and 6.5 mEq/L, there may be some symptoms involving muscles, digestion, kidneys, electrolyte balance, the liver and the heart.

Potassium levels above 6.5 mEq/L are very serious and usually require medical attention.

(The highs and lows of potassium may be different for each individual)

Muscles: Fatigue, weakness, pins and needles, tingling or numbness in the extremities, muscle contraction, muscle rigidity, muscle cramps, muscles stiffness, muscle twitching, muscle cramping, reduced reflexes, muscle contraction involving tongue, tightness in legs, strange feeling in legs.

Digestion: Discomfort, nausea, vomiting, stomach cramps, diarrhea, vomiting.

Heart: Palpitations, chest pain, irregular heartbeat, slow heartbeat, weak pulse, absent pulse, heart stoppage, small P waves, tall T waves, QRS abnormality, P wave abnormality, QT lengthening, fast heartbeat.

Kidneys: Breathing problems, wheezing, shortness of breath, fast breathing, feeling hot, low blood pressure.

Liver: The brain function becomes affected: Irritability, sleepiness, confusion, seizures, loss of consciousness.

Paralysis: Episodic muscle weakness, episodic partial paralysis, episodic total paralysis.

Laboratory blood changes: Elevated blood potassium, serum sodium level elevated, Serum CPK (creatine).

Laboratory urine changes: Elevated urine pH level. 6, 23, 39, 41, 45

Normokalemic Periodic Paralysis (Normo PP): Paralysis results from shifting of Potassium within normal ranges. (This can occur very quickly and is impossible to detect. About 50% of paralytic episodes are the result of this type of potassium shifting.)

Andersen-Tawil Syndrome (ATS): Paralysis results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle. During paralytic episodes, ATS can be associated with low potassium, high potassium or shifts in the normal (normokalemia) ranges of potassium.

One who suffers with Andersen-Tawil Syndrome may experience a variety of symptoms in relationship to their ATS paralytic episodes including but not limited to any of the symptoms from above depending on whether the attack is hypokalemic, hyperkalemic or normokalemic. They also have long QT interval heartbeats, a life threatening arrhythmia, which is a marker for ATS. Ventricular arrhythmia is common as is fainting.

It is clear to understand from the information above that an “episode”, “event” or “attack” of Periodic Paralysis, may be as simple as an eyelid twitching or as complex as full-body paralysis, may have muscle weakness or just pins and needles, may include pain or numbness, may affect the heart or digestive system or include all of them and more. An event may look different each time for an individual, depending on the triggers and which levels of potassium he or she may be experiencing or how quickly the potassium shifted in normal ranges. Attacks may differ among individuals in the same family for the reasons above.  

The symptoms of an episode may aid in knowing whether an attack is from high or low potassium, when one does not have a potassium reader to measure potassium levels.

If you are a family member, friend, co-worker, care-giver, doctor, nurse, EMT, first responder, teacher, paramedic, social worker, therapist, researcher, or psychologist, it is my desire that you can understand what it is like to have a form of Periodic Paralysis and what one suffers from the effects of potassium shifting atypically. It can be very unpredictable in how and when it manifests and can be frightening, painful (some doctors still disagree and refuse to diagnose if pain is involved, but look at the evidence), and life-threatening. While someone is in full-body paralysis, seemingly looking asleep or unconscious, they hear everything going on around them and may be experiencing all of the above without being able to tell you. There can be much frustration, fear, panic and stress. Please talk to them and let them know what is happening as you are monitoring vitals. That can help the person to relax, which may help to end the episode sooner rather than later, because the effect of stress is a trigger.

(Documentation found in our book: "Living With Periodic Paralysis: The Mystery Unraveled")

Until later...

 

Episodes of Paralysis

Hello All,

I had another very rough day yesterday and I seem to have settled into an “abortive attack”. So, as I contemplate my choice of topics to write about today, I have decided to write about what we call “episodes” or “attacks” of paralysis

It is a misconception that everyone with any form of Periodic Paralysis becomes totally paralyzed periodically. The truth is, some individuals with Periodic Paralysis have never actually had an episode of paralysis. They may, however, over time, develop permanent muscle weakness and need a wheelchair or scooter.  For most individuals, the episodes or attacks, are periods of time with muscle weakness or partial paralysis, rather than full-body paralysis. Over time, these may progress to full-body paralysis. Some individuals may have full-body episodes from the very beginning.

An individual may be only partially paralyzed. Only his or her legs may be paralyzed or they may only be weak. Episodes may occur as sudden falls or dropping to the floor. Feet or legs or arms may go numb and tingly. Muscles in the calves may become very tight and painful. An episode may include overall weakness with arrhythmia and fluctuating blood pressure. Walking may suddenly become difficult due to a weak foot.

Each of these attacks or episodes usually has a distinct beginning and end. Each episode is intermittent. They come and go. Most people will be normal between them or their muscle strength will improve between them. Many develop permanent muscle weakness over time.

That being said, the causes of these episodes and the reasons to avoid them are important to note here. On a cellular level, episodes are triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, and much more. Potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes may last hours or days. For some, 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 avoid the episodes.

After years of episodes of intermittent muscle weakness, and the development of permanent muscle weakness including my breathing muscles, I developed frightening full-body episodes of paralysis.

The following is my description of what it I experience in an episode. It was written in 2010 for my doctor to help him understand:

”Usually, I wake up in the morning and I am paralyzed. I find I can’t move. I can’t open my eyes. My mouth is open. I can’t breathe through my nose. I have urges to swallow but can’t so there is a choking sound in my throat every few minutes. Sometimes my heart will race or beat irregularly, though usually, there is no problem with my heart. My mouth is very dry. I cannot speak

As I begin to come out of it, my mouth will start to get saliva, my eyes will open but I can only see what is in front of me, since I can’t move my head. Sometimes my eyes will jerk around when I first open them, usually jerking up. My body will sometimes jerk a little. Sometimes there is a big breath my body will take.

Sometimes, I will go back into it. My eyes close, I feel very hot and all the symptoms return. Sometimes there will be a few jerks as I go back into it.

During all of this I am awake and am aware of everything going on around me. Sometimes I begin to cry, due to the frustration, and fear. I can feel the tears running down my cheeks.

If I have these at times other than upon waking, the symptoms are the same.  I get a strange sensation of heat body wide, usually beginning in my back. My eyes will close and then my body goes limp. I may have a few jerks as I am going limp. My mouth will open and I am in it…unable to move, speak or open my eyes.

Sometimes, I don’t go too deep. It is all the same but I am able to open my eyes and can speak a little with a tight tongue and tight lips. My mouth is still open, however. I can’t move my body.

Once one of these begins, it may last from several hours or can be as short as about 10 minutes, if it is a second or third one in a row.

It takes about 15 to 30 minutes to many hours to come out of it enough to move a little and attempt speech, though usually several days to fully recover. I am always left with lingering weakness for many hours that can linger into days. Speaking is difficult. Walking is difficult. My arms and hands come back sooner than my legs. I begin to get feeling back in my body. I can move my lips. I begin to breath thru my nose again. It is difficult to speak or move but it gradually comes back. Speech is very difficult; my lips don’t want to move. My tongue is difficult to move. I will suddenly have an urgency to urinate. If, at this point, I get help to the bathroom, I am like a rag doll, especially my legs. My arms flail, like a child just learning to stand and walk; balancing herself. 

For many hours, I remain too weak to do much of anything but sit up in bed or sit in a recliner. I must use my walker or a wheelchair.

I do not know what brings on or triggers these attacks/episodes (we know now). I know that sleep has something to do with some of them, but not all of them. I know that sometimes, when I wake up during the night with an urgency to urinate, I am coming out of one, because I have all of the symptoms previously discussed. My arms and hands and legs are numb and feeling is just coming back. My mouth is tight and dry. Walking is difficult.” (May 28, 2010)

After that time, my episodes got increasingly worse and have lasted up to 7 hours. I have severe issues with blood pressure fluctuation, heart rate fluctuation, arrhythmia, including long QT interval heartbeats, choking, and breathing difficulties. I must do everything I can to avoid them and now I do have some relief from these major attacks.

 
We have discovered ways to reduce the number and severity of the episodes. We share this with our members and it is included in our books. The following is a quick overview and will be discussed in depth on another day:

We do this by a recommendation of evaluating our medications (most make it worse and create horrible life-threatening complications and even death), knowing if we have high or low potassium issues, monitoring our vitals, eating a diet based on our type of PP, discovering our triggers, getting enough rest, learning to relax, ensuring proper hydration, maintaining a moderate environment, learning our exercise limitations, using possible supplements, obtaining friend and family support, and seeking our own mental well being based on education and understanding of the condition and how it affects us.

Despite doing all of this, we still find ourselves in abortive attacks for periods of time. Abortive attacks are periods of extended time anywhere from hours, days, weeks or months in which some individuals are totally debilitated by extreme muscle weakness without going into full paralysis. The previously described common symptoms may begin but the full attack or total paralysis may not occur. The person is left with severe weakness and other symptoms such as extreme fatigue.  It is difficult to do anything physically and it also can affect cognition abilities, such as memory, thought processing and speech and some become very fragile emotionally. The individual may want to sleep and may have no appetite.
 
In my own case the abortive attacks are totally debilitating and actually worse than the episodes of paralysis. When I am in them, I wish I could slip into paralysis and get it “over with”. I have experienced no worse feelings of weakness and helplessness in my life other than being in a full body state of paralysis.

I have included a slide show of an episode I experienced a few years ago. I also have videos of a few and will share if someone is interested in seeing a full-body episode of Periodic Paralysis.

Until later…

Diagnosis Continued November 16, 2013

Hello All,

I woke up with the intention of writing about "episodes of paralysis" this morning, but changed my mind after I received a comment on what I wrote yesterday about diagnosing. I actually spent a few hours yesterday writing more about it and then decided to delete most of it and left some sketchy information, not wanting to "rock the boat". This morning, however, I am going to "rock the boat".....
Here is the comment by a very good friend and very active member of our network. I am sure she will not mind me re-posting this:

"Hi Susan, as a member of your network and another individual with unusual symptoms.. (I become weak while well within normal limits on my serum potassium) It was through luck that I was able to get my diagnosis.. I do however believe it is a much larger portion than 40 percent that have as of yet unknown mutations. Thank you for starting your blog Susan to put a more visible face of Periodic Paralysis and Andersen Tawil Syndrome on line.. and hopefully others will free to comment and share or find their way to private conversations about these disorders... "

My reply (wish I could stand on a soapbox):

Hello, Thanks for bringing that up. I agree with you. The number, of people with unknown mutations is much higher than 40% according to our own statistics. However, the medical journal articles have the number at 40%. In the past three years I can count on one hand the number of individuals in our membership who have received an actual genetic diagnosis based on genetic testing done in another country. The number of individuals who have joined us while waiting for the results of testing, or sent in their blood after joining us and have received letters stating that they have "no known mutation" is too many to count. The researchers need to update their journal articles.

As any of our members know, I do not support the push to send our blood to Europe for DNA testing. I believe we need to first obtain a clinical diagnosis (based on symptoms and characteristics, after all else has been ruled out). We need to begin proper and well-rounded treatment as soon as possible. I believe that the expectation of finding a mutation makes doctors reluctant to diagnose clinically, sets everyone’s treatment back and sets everyone up for a huge fall after waiting for a year or more (one family waited for 4 years) for a diagnosis and treatment, when they finally get the news that the majority of us get...."no KNOWN mutation". At that point the support stops from some other groups. We were actually told that they “….do not know how to help nor do they want to and that we “muddy the water for the researchers”. (Not my words). There is no more help and they are left to fend for themselves, even though they are sicker than the people they do offer to support.

These individuals begin to doubt themselves, family doubts them, doctors diagnose them with mental disorders and they begin to look for the "specialists" who are basically non-existent or no help at all if and when they do see them. These individuals grow sicker by the day and become hopeless, depressed and beaten down. How do I know??? I lived through it myself and have members join everyday who have lived it or are now living it. I actually have members from all over the world begging me for help. They tell me that they attempt to contact the larger groups, but after sending in their blood or after receiving their letters, they receive no more correspondence no matter how many times they try, everything becomes quiet. They ask me to write, hoping I may have some influence...in fact I do not. It is at that point that I begin to try to find proper help for them and offer them our support.

It is why we created the Periodic Paralysis Network and wrote our book and why we created our blog. We believe in these people. We know they have some form of Periodic Paralysis. We know they are very ill and suffer greatly, not just from their symptoms, but from the people in their lives who don't get it, including their doctors.  We offer support, friendship, education, validation, advocacy, empowerment, and much more but most important we offer them HOPE. The hope that they will get better using natural methods to control some of their symptoms, the hope that they can find a doctor who will work with them using our methods, the hope that we can direct them in ways to get a clinical diagnosis and the hope that people in their lives will learn about and understand this cruel condition by way of our awareness campaign through our book, website, forums and blog.

We need for medical professionals to learn the real facts about Periodic Paralysis and how to diagnosis it clinically (based on symptoms and characteristics, once all else is ruled out). Withholding a diagnosis, misdiagnosing it and mis-treating it with improper medications is what is know as creating illness, more damage or death due to iatrogenesis or iatrogenic effect (preventable harm resulting from medical treatment or advice to patients).

"In the United States an estimated 225,000 deaths per year have iatrogenic causes, with only heart disease and cancer causing more deaths." http://en.wikipedia.org/wiki/Iatrogenesis
Our organization, is now considered a patient advocacy group, because we do everything we can to prevent iatrogenesis of people with Periodic Paralysis by educating our members and hopefully their doctors. We are proud to have been accepted as a member of the Advocate Directory, a group of organizations around the world devoted to safety, quality and support in healthcare. http://www.advocatedirectory.org/component/content/article/27-oregon/1048-periodic-paralysis-network

So, to sum up, yes, I believe there are more than 40% of people with forms of Periodic Paralysis which have an unknown or yet to be discovered genetic mutation. These individuals are usually sicker than many others with PP because they fail get clinically diagnosed and fail to get proper treatment, in fact many are misdiagnosed and mis-treated with improper medications and more ill due to the iatrogenic effect. They suffer needlessly from the rejection of other PP groups, family members, friends, co-workers, and doctors. They can enter a state of learned helplessness, which in turn makes them more ill because stress is one of our largest triggers. This has to stop!! Doctors need to diagnose people with Periodic Paralysis clinically, because well more than 40% of us, the majority of us, have unknown mutations.

The Diagnosis November 15, 2013

Hello All,

I had a very busy and successful day yesterday completing this blog site, and working on other issues and improvements related to the Periodic Paralysis Network. I do all of my work from my recliner in a reclining position and am hooked up to oxygen, because any kind of exertion, including sitting up straight in a chair or talking on the telephone for more than a few minutes, causes me to have symptoms related to exercise intolerance and the possibility of full-body paralysis. So when I talk about being busy, I mean typing (writing 2 new books); researching; answering questions; helping members as needed; reading; phone calling; analyzing survey data; translating; making sure all websites, pages, groups, boards, pinterest, our survey etc, are all up and running appropriately; seeking fundraising, marketing and awareness methods, and more. Though I am supposed to avoid stress and exertion because of the possibility of triggering an episode of paralysis and because I had a TIA about 2 months ago, my self-imposed daily schedule gives me both...without being aware of it. So last evening, I went into a partial paralytic episode. I suddenly could not speak and was very weak. My blood pressure, which is normally 90/60 was at 131/60 and then a few minutes later was 88/48. My symptoms indicated a fluctuation of potassium between high and low potassium or an issue with my heart and I was unable to drink or swallow anyway, so I did not use my potassium reader nor did I take any potassium. With ATS, I can swing both ways...so taking potassium for me can actually make me worse. I went to bed and was in and out of paralysis through the night as always. I am now up and ready to begin anew, but will try to rest a little more today.

Yesterday and this morning there was discussion in our support group and one of our pages about getting a diagnosis. One group member was eager to share her newly acquired genetic diagnosis with us. It was a very long time coming as she is a mother with several children and has suffered the effects of PP for many years now. Another discussion was from a different point of view. A woman who has suffered many long years and has been unable to work for quite awhile, wrote about the horrible treatment she endured in the hospital a few weeks ago due to uninformed doctors. They labeled her with a mental disorder and she was sent home with no diagnosis or proper treatment. The difference you ask????? One had a genetic test, which showed a mutation for a form of Hypokalemic Periodic Paralysis and the other person's test came back negative for any of the KNOWN genetic mutations.

What does this all mean and why is it a huge problem in the world of Periodic Paralysis???

There are two methods used for diagnosis of the various types of Periodic Paralysis; one is through a genetic test, which studies one's DNA. If a mutation is found the person receives a "genetic" diagnosis. If a person is diagnosed based on their symptoms, once all else has been ruled out, it is called a "clinical" diagnosis. Too many doctors will not give a clinical diagnosis once everything else has been ruled out and are eager to diagnose a person, especially women, with a mental disorder such as "conversion disorder" and then prescribe a psychotropic medication which makes the symptoms worse or can actually kill someone with certain forms of PP.

The truth about the genetic mutations for Periodic Paralysis and Andersen-Tawil Syndrome:

About 40% of all individuals with Periodic Paralysis have a form, which has not yet been discovered and must therefore, be diagnosed clinically, based on symptoms and characteristics.

The other issue is that up to 50% of those with PP have potassium shifting in normal ranges, rather than low or high, which causes their symptoms. Without a test proving low or high potassium, some uniformed doctors refuse to diagnose although everything else is ruled out and there are clearly periods of muscle weakness and/or paralysis.

http://brain.oxfordjournals.org/content/129/1/8.full.pdf

http://www.ncbi.nlm.nih.gov/books/NBK1264/

http://en.wikipedia.org/wiki/Andersen-Tawil_syndrome#Type_1_and_type_2


It is my belief that too much emphasis is placed upon the genetic testing, because only about one half us will have a genetic mutation if we are tested genetically. Diagnosis needs to be based on symptoms and characteristic once all else is ruled out.

The members of our support group are mixed. Many do not have a diagnosis yet and are seeking one. Some, have a clinical diagnosis and some have a genetic diagnosis. We all have mixed feelings for ourselves, and others with a diagnosis: one of relief that we finally have it but one of sadness that we truly are diagnosed. We are supportive of each other, regardless. We share ideas of how to get a diagnosis and how to treat our symptoms naturally for those who cannot  get the proper medications due to a lack of a diagnosis or  those who cannot take medications

At this time we are working on creating criteria for better clinical diagnosing.

Potassium and Potassium Meters November 14, 2013

Hello All,

I made it through another day!! Although I was able to get everything completed and added to the new blog, I ended up having a difficult afternoon. I suddenly had chest pains and overall weakness. I first took my blood pressure and found it was suddenly high even though I was sitting in my recliner and had been for over an hour. My heart rate was up. I checked my blood sugar level and found it was high. These were all signs that my potassium levels were low, so I checked my potassium level with my potassium meter and found I was indeed low. I took some potassium bicarbonate, and within thirty minutes, I began to feel a little better and never went into an episode of paralysis.

However, I never did regain my strength and did not feel strong enough to get up for dinner so Calvin brought it to me. I was thankful it was mostly soft food because I did not have the strength to chew much and because earlier in the day, as I was eating breakfast, my jaw bones near my temples began to have severe pain as I chewed and I was unable to complete my meal. I had soft food for lunch also. I will have to eat soft food again today....

Yesterday, in our educational support group, there was quite a discussion about the purchase of potassium meters and a newer device for measuring our potassium levels in our saliva or blood. They work much like a glucose meter, which measures the level of sugar in our blood. However, the two biggest differences are; the meters are not medical devices and are very expensive. The original device, which is no longer being manufactured, was $250.00 and the new potassium meter is $350.00. Because they are not medical devices, insurance will not pay for them. This is a large issue for those of us with Periodic Paralysis, because potassium shifting is the bottom line of our condition. When it shifts, we become either weak or paralyzed. We need to know if our potassium level is high, low or in normal levels, so we can know how to treat our symptoms.

I wrote the following to the company to explain why and how we need and use potassium meters and why the price needs to be lowered and why it would be a good thing to have it declared a medical device:

"Dear Sirs:

I have a very rare hereditary disease called Periodic Paralysis (PP). The type I have, a variant of Andersen-Tawil Syndrome (ATS) Type 2,  is the most rare type of this condition. It is an ion channelopathy. It affects the body on the cellular level.

Those that have this condition have a problem with potassium entering the muscle cells in error. When this happens the muscles weaken or become paralyzed and it can last from a few minutes to several hours to days at a time. As the muscles are paralyzed, it effects the heart causing life-threatening arrhythmia (including Long QT interval heartbeat), tachycardia or bradycardia, fluctuating blood pressure, low oxygen levels, choking and the possibility cessation of breathing,  cardiac arrest and /or respiratory arrest.

Individuals with PP have a myriad of triggers which can set this into motion: certain foods, stress, exercise, medications, sleep, salt, sugar, wheat, gluten, heat, cold, IVs, anesthesia and more. When we eat or experience a trigger, it causes the potassium in our body to either increase or decrease or just shift in normal ranges. When either of these happen,  the weakness or paralysis and serious symptoms begin. So, we must discover and know what the triggers are in order to avoid them. Sometimes we can do everything right and we can still have episodes of paralysis.

When we begin to feel symptoms, we can use a potassium meter device that can let us know if our potassium is high, low or normal and this allows us to know how to treat it or a caregiver to know how to treat us or whether they need to call for an ambulance. Unfortunately, this device is not a medical device and as long as this device is not a medical device, insurance companies will not pay for it. You now have a new device which is apparently easier to use but costs $350.00. Most families cannot afford this.

If made into a medical device, your sales would increase because they would be paid for by medical insurance and every family with an individual with Periodic Paralysis that needs one could get it. As well, every paramedic, ER, hospital, doctor's office and school nurse could then have one, paid for by the company they work for, and be trained on how to use them so they can know instantly what is happening with the person's potassium levels for quick treatment. Individuals may die while they wait for traditional blood tests to come back from the lab with the results.

I have a website and discussion and support groups to help others with this disease. We have members from all over the world and most of them cannot afford  this device and suffer daily in paralysis and the other life threatening symptoms I discussed. Many of them have low to no quality of life. This device would help by knowing sooner whether they need to take potassium or avoid it or for their caregivers to know if they need to go to the hospital, etc.The quality of life could improve for many individuals with Periodic Paralysis. Sales would increase because there is a world-wide need.

Please visit my website to learn more:    www.periodicparalysisnetwork.com

Thank you"

I am now in contact with employees from this company. They have been very helpful and we are in discussion over these issues. We remain hopeful that changes can be made making this device more affordable and accessible.

Have a good day!

Until later...

What is Periodic Paralysis??

Hello All,

"Periodic Paralysis is a disease unlike any other. It is in a category all its own and needs to be treated in non-conventional ways." (Quote from one of the doctors who diagnosed me.)

As I have been busy building this blog, I have been trying to decide the best way to describe just what Periodic Paralysis is to our audience. Rather than re-inventing the wheel, I decided to post an article I wrote about it on PublishUs. It is a good overview of my story and Periodic Paralysis. Then I hope to break down the components and write about a different aspect of it each day. Please feel free to ask questions and that may help to guide me to a topic for research and for a future post.

What is Periodic Paralysis?

I am 69 years old and was diagnosed with an extremely rare, hereditary, debilitating, genetic disorder called Periodic Paralysis on February 7, 2011 at the age of 62. The form I have is a variant of Andersen-Tawil Syndrome (ATS). I was misdiagnosed for over 50 years. How could such a thing happen in today’s world with all of the modern medicine and technology? The following is my story, information about this cruel disease and how and why I control the symptoms.

I have had episodes of partial and total full-body paralysis for much of my life. Due to a series of misdiagnoses and mistreatment with improper medications, I have become totally and permanently disabled with weak muscles throughout my body including those involved with my vision, digestion, 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 arrhythmia, which include life-threatening long QT interval heartbeats. I sit in a recliner for most of my day and can walk (with a walker) only from one room to another or stay on my feet only short periods of time to do simple tasks like brushing my teeth. I must use a motorized wheelchair if I leave home or need to go any distance. If I did not have the help of my husband, I would have to live in an assisted living program.

Through the past years of my physical decline, I have had to give up my career as a special education teacher, my hobbies to include hiking, walking, swimming, exercising, fishing, camping, traveling, shopping, cooking and baking. I had to sell, and move away from, a beautiful home in the mountains of Utah.  I can no longer drive. I have lost many friends, because I could not keep up with them or entertain any longer. I have lost contact with family members who did not understand or did not want to watch my decline or who thought I was a hypochondriac. I have lost the connection I once had with my grandchildren because I can no longer keep up with them or continue a meaningful relationship with them. The relationship with my husband has changed from husband and wife to caregiver and patient. Most of the over 30 doctors I had seen in the 6 years before my diagnosis treated me poorly and as if I were mentally ill.

 I have spent the past several years working diligently to get a diagnosis and treatment for the ailment that cruelly stole the quality of my life. The most difficult part of this, for me, is knowing that I may not have became this seriously ill if just one of the over 30 doctors I have seen in the last 6 years in Oregon and the many years before, would have taken me seriously.

 One Sunday morning after recovering from yet another full body paralytic episode, I searched once again on my computer for “periods of paralysis”. I was shocked and dismayed to read about a disease, which actually had all of the components many of my family members and I had been experiencing for so many years. Once I realized what I actually had, the struggle became even more difficult trying to convince my doctors. By this point, everything else had been ruled out, but no one wanted to diagnose me. I heard I was “too old” to have it. I was ignored. I was dismissed and told to go have a “good time” as long as I was in Portland, after driving 250 miles for the results of a muscle biopsy (The test did show myopathy (muscle disease), change in shape and size of muscle fiber but I was told it was normal). I was given lidocaine after telling my primary care physician (PCP) I could not have it during a mole biopsy. It caused an episode of paralysis but I was treated as if I were a naughty child behaving badly. I was left alone in the room in paralysis. I was in metabolic acidosis, twice in front of my PCP and sent home rather than to the hospital. My heart was in tachycardia and I could not breathe. After discovering that I was having long QT interval heartbeats on a Holter monitor (a marker for ATS), this was dismissed by my PCP, even after being told it meant I could go into cardiac arrest at any given moment. After two months, I had to request a referral to an electrocardiologist. The referral took two more weeks to get from my PCP and the insurance company.

During this 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 until it was beating 130 to 140 beats per minute, even while I was eating.

My husband became so concerned with the lack of caring being displayed by my PCP and our insurance company, that he walked into a medical supply company and told them what was happening and asked if they could help me to get oxygen because I could not breath. After speaking with him for a few minutes, the manager told my husband that she would give all of the information he had carried in with him, to one of the technicians and that they would see what they could do for us. She told my husband that they find it is best to get all the information together and then, “Hit them (doctors) between the eyes with the facts”.

They hooked me up with a recording oximeter. It was discovered that my oxygen saturation levels were dropping dangerously low during my episodes of paralysis and it was apparent that they were low every time I exerted myself in any way. The technician took the information to my PCP and she had no choice but to sign a referral for me to get oxygen. At that point, we began to look for another PCP and decided to change insurance companies to avoid the need for referrals.

 A month or two before this point, I was in despair over trying to find a doctor who knew about Periodic Paralysis. Then on the evening news, I saw their weekly feature of offering direct calls to doctors with any medical question. I quickly picked up the phone. After a wait of only a few minutes, I was speaking with one of the physicians. I asked her if she had heard of PP or knew of any doctors who might know about it. As luck would have it, she herself had a patient with it. She gave me the name of the neurologist the patient sees.

I went to my PCP with this information and talked her into giving me yet another referral. The neurologist eventually diagnosed me with “probable” Periodic Paralysis. He wrote a letter telling my PCP that I needed to see an electrocardiologist right away. It was several months before I got the referral. He described my heart condition, by that point as serious with no treatment, but insisted I needed to have a heart monitor implanted. He also set up a renal specialist to help diagnose what he believed was Andersen-Tawil Syndrome based on all the information being presented to him by my PCP, the neurologist and me. I did get the diagnosis while in the hospital for the implant after going into paralysis and being observed by the doctors. The paralytic episode was caused by a mistake. They gave me a saline drip and lidocaine during the procedure. My diagnosis was actually based on an accident.

What is Periodic Paralysis?

 One of the neurologists who diagnosed me recently said, “Periodic Paralysis is a disease unlike any other. It is not a neuromuscular, mitochondrial or autoimmune disease nor is it a muscle myopathy. It is in a category all its own and needs to be treated in non-conventional ways.” He further stated, “Doctors need to keep an open mind and think ‘outside of the box’ when it comes to diagnosing and treating Periodic Paralysis.”

The following is an overview of the condition gleaned from years of research and my own experience.

Periodic Paralysis (PP) is an extremely rare, hereditary disease characterized by episodes of muscular weakness or paralysis, a total lack of muscle tone without the loss of sensation while remaining consciousness. It is passed from either the mother or the father to any of the children, male or female. It is a mineral metabolic disorder, also known as an ion channelopathy, a disease involving dysfunction of an ion channel for potassium, sodium, chloride or calcium. Ion channels regulate ions as they flow in and out of the cells.

 

The Most Common Forms

Hypokalemic Periodic Paralysis (HypoPP)

Paralysis results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium in the blood (hypokalemia) during paralytic episodes.

Hyperkalemic Periodic Paralysis (HyperPP)

Paralysis results from problems with the way the body controls sodium and potassium levels in cells. It is associated with high levels of potassium in the blood (hyperkalemia) during paralytic episodes.

Andersen-Tawil Syndrome (ATS)

Paralysis results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle. During paralytic episodes, ATS can be associated with low potassium, high potassium or shifts within the normal (normokalemia) ranges of potassium. An arrhythmia, long Qt interval heartbeat, is associated with ATS as well as certain characteristics, such as webbed or partially webbed toes, crooked little fingers and dental anomalies. 

Normokalemic Periodic Paralysis (NormoPP)

Paralysis results when potassium shifts within in normal ranges. This can happen in any form of Periodic Paralysis; Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis, Normokalemic Periodic Paralysis and Andersen-Tawil Syndrome.The paralysis may result from the shifting itself, rather than low or high potassium or it may occur due to the shifting of the potassium, which can happen very quickly and is undetectable in lab testing.

Paramyotonia Congenita (PMC)

The skeletal muscles can become stiff, tight, tense or contracted and weak due when the sodium channels close much too slowly and the sodium, potassium, chloride and water continue to flow into the muscles. It is actually considered to be a form of Hyperkalemic Periodic Paralysis, however, the symptoms can appear from shifting of potassium into low or high ranges or even if potassium shifts within normal levels.

Thyrotoxic Periodic Paralysis (TPP)

Intermittent paralysis results from low potassium due to an overactive thyroid or hyperthyroidism.  It can occur spontaneously or can result from a genetic mutation. Unlike the other forms of Periodic Paralysis, TPP can be treated and cured by removing or treating the thyroid.

Only about 50% of the above known types of Periodic Paralysis have identified genetic markers. This means they can be diagnosed by DNA testing. The remainders of the cases are diagnosed by the symptoms and characteristics of the patient. This is called being diagnosed clinically. Those who are diagnosed clinically have symptoms and characteristics identical to others who have known genetic codes. One who is diagnosed with ATS clinically is said to have ATS Type 2 to differentiate.

Although Hypo PP, Hyper PP and ATS are forms of periodic paralysis the mechanism, which creates the muscle weakness and paralysis, is different as described above and the symptoms before and accompanying the paralysis vary. Symptoms can range from simple weakness to total body paralysis with life-threatening heart arrhythmia and tachycardia, breathing problems and choking. Death can occur in some rare cases. The episodes may last from a few minutes to several hours or many days. The speed with which the potassium shifts may cause symptoms to occur suddenly and without warning or there may be a gradual progression into the weakness or paralysis.

Abortive attacks may also affect some individuals. Occasionally, the common symptoms may begin but the full attack or paralysis may not occur. The person is left with extreme weakness and other symptoms such as extreme fatigue. This may last for hours, days or weeks.

The following symptoms may accompany the paralytic attacks. Most are based on my own experiences and the experiences of others I have talked with. Some may cross over.

One who suffers with Hypokalemic Periodic Paralysis may experience a variety of symptoms in relationship to their hypokalemic paralytic attacks including but not limited to the following:

 

Paralysis, partial

Paralysis, total

Muscle weakness

Muscle stiffness

Muscle aches

Muscle cramps

Pins and needles sensation

Pulse issues-fast heart beat
High blood pressure

Breathing problems-barely breathing

Hypoventilation

Irritability

Severe thirst

Nausea

Vomiting

Constipation

Excessive urination

Irregular heartbeat

Sweating

Tiredness

One who suffers with Hyperkalemic Periodic Paralysis may experience a variety of symptoms in relationship to their hyperkalemic paralytic attacks including but not limited to the following:

 

Paralysis, partial

Paralysis, total

Muscle weakness

Muscle cramps

Fasciculation

Tightness in legs

Strange feeling in legs

Tingling sensations

Pulse issues - absent, slow, or weak
Low blood pressure

Heart palpitations

Irregular heartbeat

Breathing problems-fast breathing

Mild hyperventilation

Nausea

Feeling hot

Slurring words

Sleepiness

One who suffers with Andersen-Tawil Syndrome may experience a variety of symptoms in relationship to their ATS paralytic episodes including but not limited to any of the symptoms from above depending on whether the attack is hypokalemic, hyperkalemic or normokalemic. They also have long QT interval heartbeats, a life threatening arrhythmia, which is a marker for ATS. Ventricular arrhythmia is common as is fainting.

The periodic muscle weakness or paralysis is triggered by a wide variety of activities such as exercise or sleep; foods such as carbohydrates or meat; conditions such as heat or cold; medications such as antibiotics or muscle relaxers; compounds such as caffeine or salt or simply resting after exercise. Many of the triggers are the same for most people but some of the triggers can be unique to each person or the type of Periodic Paralysis.

It is important to discover one’s triggers because of the need to stop the episodes, if possible, in order to regain some quality of my live and to prevent further damage to the organs as the potassium shifts and depletes in my body. This damage can lead to permanent weakness and disability as well as tachycardia and serious arrhythmia, including long QT intervals, which can lead to cardiac arrest. Avoiding paralysis is absolutely necessary for me, due to these life-threatening conditions.

Every moment of my present life I must control my symptoms. The following plan was created after trial and error in my own quest for treatment and management. I had no doctor assisting me and gleaned as much as possible on the Internet and in discussion with other people who live with Periodic Paralysis and Andersen-Tawil Syndrome. Anyone with Periodic Paralysis may follow this plan to see promising results.

Discover triggers:

Simple carbohydrates,

Complex carbohydrates,

Most meat,

Wheat,

Gluten,

Salt,

Sugar,

Caffeine,

Medications including over-the-counter medications,

Exercise,

Exertion,

Rest after exercise,

Sleep, all aspects: falling asleep, during sleep, waking up and napping.

Stress (good or bad),

Dehydration

Msg

Food in general

Large meals

Fatigue

Fasting

And ?  I still have not discovered all of my triggers. No matter how careful I am, I can still go into paralysis without knowing why.

Control symptoms:

Avoid triggers

Following a proper ph balanced diet, eating from the farm; not the factory

Take no medications including over-the-counter medications

Avoid stress

No exercise

No exertion

Get plenty of rest

Stay well hydrated

Constantly monitor vitals

Take potassium when needed (if low potassium) (If under 3.0 go the the hospital)

Take sugar or glucose tablets as needed (if high potassium) (If over 6.5 go to hospital)

24/7 oxygen

Monitor vitals:

I use several pieces of medical equipment for measuring my vitals. These items are necessary for my caregiver to monitor me while in paralysis or for me to know which direction my potassium shifts for proper treatment.

Cardy meter (potassium reader),

Finger pulse oximeter,

Blood sugar monitor,

Stethoscope,

Wrist blood pressure monitor,

Thermometer and a digital

pH balance reader

Litmus paper

Gather a team of medical professionals:

I have an MD as my primary care provider and a cardiologist. I no longer have a renal specialist or neurologist.

Continue to gather information: I must educate myself, my family, my friends, my neighbors, my community, my doctors, my hospitals, my dentist, my optometrist and my local first responders about every aspect of my condition. Knowing and understanding this disease and syndrome eases my fears and the fears of those around me and assists me with proper management and treatment. Knowing others will be able to aid me during paralysis episodes is essential.

Join Periodic Paralysis social groups: Being part of a Periodic Paralysis community is vital. I have discovered I am not alone. I receive encouragement, support, sympathy and empathy. I gain information and knowledge from others who live with the same enemy daily. I ask questions and share ideas.

The above plan is followed constantly and diligently.  It is a constant “tightrope” I must balance, day-by-day, minute-by-minute; second-by-second. I cannot let up for even a minute or I can go into paralysis and the cycle begins anew.

Prognosis: Most individuals with Hypokalemic Periodic Paralysis are able to control the symptoms and paralytic attacks with one or two forms of potassium and avoiding the things that trigger them. Individuals with Hyperkalemic Periodic Paralysis symptoms and paralytic attacks can control their symptoms and paralytic attacks with a diet high in carbohydrates and sugar and by avoiding the triggers.

Controlling the symptoms and paralytic attacks in people with Andersen-Tawil Syndrome is much more difficult. This is due to the fact that these individuals suffer from paralysis due to potassium levels that can be low, high or in normal ranges. Taking potassium may make the symptoms worse. Also individuals with ATS are usually unable to take any forms of medication. Managing the heart issues by surgery is also a problem because anesthesia can trigger paralysis and deadly arrhythmia. For these individuals, natural methods are the best way to manage the symptoms.

For most people with Periodic Paralysis the weakness and paralysis are intermittent. There is a beginning and end and between the episodes the individual is normal. Some individuals, however, may experience only gradual muscle weakness. Others experience periods of paralysis and gradual, progressive, chronic weakness. For some individuals the weakness can linger or become permanent. Some people will become disabled and require the use of a power wheelchair. Some individuals may become terminal if the disease weakens the breathing muscles.

The Periodic Paralysis Network:

My husband, Calvin, and I have created and now manage the Periodic Paralysis Network. We are an organization with an online community of people who are affected by Periodic Paralysis. The Periodic Paralysis Network provides a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. 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. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will receive encouragement, support, sympathy, empathy and validation. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members   ask questions and share ideas. We are usually on in real time, answering questions and providing support as needed for our members.

We have also written and published the following books,
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
"What Is Periodic Paralysis?: A Disease Like No Other"

They can be purchased at:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

If you wish to know more about Periodic Paralysis, you may visit the Periodic Paralysis Network.

Until Later...