The Truth About Diagnosing and Treating Periodic Paralysis

Hello All,

This morning one of our new members expressed, sadness and frustration over the fact, that after searching for a diagnosis and proper treatment for her obvious Periodic Paralysis (PP) symptoms, she has lost all confidence in doctors. I responded with what felt like I was writing a, “Yes, Virginia, there is a Santa Claus” letter. In this case it was “Yes, Virginia, there are very few doctors who know about Periodic Paralysis.” The following is what I wrote:

Dear Virginia,

 
Most of us who have Periodic Paralysis do not have confidence in doctors or medical professionals anymore. Periodic Paralysis is a mineral metabolic disorder, but neurologists who typically diagnose and treat it, see it as a neurological disorder and try to treat it as such or due to lack of education about it or misinformation about it, they do not recognize it so fail to diagnose it. The misdiagnosis or lack of diagnosis leads to mistreatment with wrong medications or no treatment. Either way, the individual with PP, becomes worse. This is called iatrogenisis, which is harm that is preventable from medical treatment or a lack of treatment. 

Periodic Paralysis should be able to be treated by an endocrinologist, because they are familiar with the thyrotoxic form of PP, but those who will or know about PP are difficult to find. The so-called "specialists" are involved in the research end of it but unless you are genetically diagnosed or absolutely a "perfect fit" for their studies you are not diagnosed or your diagnosis may taken away. This happened to one of our members. She was later found to have the genetic mutation!!!!! I have seen 5 specialists and discussed my case with 3 others. What I am saying is true. None of them could/would help me.

My own research and experiences have led me to know the best way to find a doctor to diagnose and treat your symptoms. We created our website, our support group, our blog and wrote our books to share these ideas with others.

We find it best to locate a good MD, usually an internist is best, who is willing to work WITH you and learn WITH you. You do this by calling the different doctors in your area; a clinic is the best, and talk to the office managers. Tell them your story. Ask them to talk to the doctors in their office or clinic about it and one will surely step forward who wants to work with you. They will call you back with the name of a willing doctor. You, then, need to take the lead with the information and with your treatment. 

 The first place to start is your diet, strictly organic and as pH balanced as possible. Then discover all of your triggers and avoid them. Gather as many home medical instruments as you can to monitor and track your vitals, at the very least a wrist blood pressure cuff, finger oximeter, and potassium reader if possible. 

Gather your own team of specialists as needed through and with the help of your MD or internist. They will know or can find physicians who will work with them and you.

IF YOU FEEL YOU MUST (not my advice), experiment with the medications and different types of potassium available, but be extremely careful as most have severe side effects and can make you worse. Do not take them just because everyone else does and the doctors say to do it, especially if your symptoms are made worse by the drugs, and if you do not have a genetic mutation found yet. Some forms shift both high and low potassium and some shift within normal potassium ranges so taking potassium may make it worse.

Each one of us is a little different, even in the same family, and we must find what works for us as an individual.

It is hard work to totally manage and direct your own care, but it seems to be the only way to do it for most of us. Accepting that fact is also difficult. I was dying until my husband and I took charge of my care. I went from four or five severe, full-body paralytic episodes a day lasting for several hours each to one or two attacks a month with much less severity, except for the episodes I have at night in my sleep. It is still a game of experimenting at times and trying new things. We are always trying to balance while “walking the tightrope.”

I wish I could tell everyone there is a "quick fix," "magical cures," "healing medications," and "perfect treatments," but I am sorry to say I cannot.  The plan we have written about seems to work the best.

Description and explanation of all of the above information can be found in articles on our website and on our blog, in discussion on our support group, as well as in our 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" and "What Is Periodic Paralysis?: A Disease Like No Other."

www.periodicparalysisnetwork.com

http://livingwithperiodicparalysis.blogspot.com/

DISCLAIMER: There are some very good doctors out there who are willing to help. But when someone has been through the wringer, it is best to try a new approach. Over 30 doctors in 6 years and about 6 more since then, gave us a good and real look at what most of us are going through. For those individuals, this may be an approach that will help them and give them some hope.....

Until later...

My Story: How I Got My Diagnosis Of Periodic Paralysis

Hello All,

      

 How I Got My Diagnosis Of Periodic Paralysis

I am 74 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 those 6 years have treated me poorly and as if I were mentally ill.

I have spent 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 breathe. 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.

Since my diagnosis eleven years ago, my husband and I have created and now manage the Periodic Paralysis Network. We are an organization with an online community of over 1,300 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 all-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 books, Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide and Workbook: Be All You Can Be Naturally, A Bill Of Rights For Periodic Paralysis Patients and What Is Periodic Paralysis?: A Disease Like No Other. If you wish to know more about Periodic Paralysis, you may visit the Periodic Paralysis  Network.

 

Until Later...

***** I have now been diagnosed genetically with Andersen-Tawil Syndrome (ATS) KCNJ5 and Hyperkalemic Periodic Paralysis (HyperKPP)/Paramyotonia Congenita (PMC) SCN4A

What is Periodic Paralysis?

Hello All,

I am re-posting this article in two parts. It was not actually posted on my blog but I have a link to it in another site. There may be issues with the link so I decided to post it again. This article contains the facts about Periodic Paralysis and the other article, "My Story" is the personal narrative of how I got diagnosed.
                                             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.

There are several known types:

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.

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.

 

Normokalemic Periodic Paralysis (Normo PP): Paralysis results from the movement or shifting of potassium within ranges, which are normal (normokalemia).

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. Andersen-Tawil Syndrome is discussed in more detail later in this section.

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, Normo 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, total
Muscle weakness
Muscle stiffness
Muscle aches
Muscle cramps
Pins and needles sensation
Pulse issues-fast heart beat
Breathing problems-barely breathing
Hypoventilation
Irritability
Severe thirst
Nausea
Vomiting
Constipation
Excessive urination
Irregular heartbeat
Sweating
Tiredness
Paralysis, partial

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, total
Paralysis, partial
Muscle weakness
Muscle cramps
Tightness in legs
Strange feeling in legs
Tingling sensations
Pulse issues - absent, slow, or weak
Heart palpitations
Irregular heartbeat
Breathing problems-fast breathing
Mild hyperventilation
Nausea
Feeling hot
Slurring words
Sleepiness
Muscle twitching

One who suffers with Normokalemic Periodic Paralysis may experience a variety of symptoms including those seen in both the hypokalemic and hyperkalemic paralytic attacks as listed above.

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 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" and "What Is Periodic Paralysis?: A Disease Like No Other."  If you wish to know more about Periodic Paralysis, you may visit the  
Periodic ParalysisNetwork.





Until later...

Dysautonomia and Periodic Paralysis

Hello All,

I posted on our PPN Support Group a few days ago about experiencing symptoms of severe weakness with pressure on my head, slight headache, dizziness, brain fog, unable to speak at times and heart arrhythmia. This was accompanied by an odd blood pressure reading of both high and low blood pressure at the same time. I usually have very low blood pressure when sitting and then very high when I am standing, moving around or exerting myself in any way.

One of our members suggested that I might have some kind of dysautonomia or orthostatic intolerance. This is seen when blood pressure drops or heart rate spikes from being up right. It is a dysfunction of the autonomic nervous system.

Though not diagnosed with dysautonomia, I assume I have some form. For several years I have been unable to sit up straight for any length of time. I must be in a recliner and my power wheelchair is designed with a reclining seat for that very reason. I must have it partially reclining when in it, otherwise my blood pressure goes up and oxygen goes down and arrhythmia begins. I can only be on my feet or do anything to exert myself for a short while because of this. I am on oxygen 24/7.

Due to the form of PP I have, I can take no medications because most cause my blood pressure to drop. With fluctuating blood pressure and heart rate and long QT heart arrhythmia, medication is not an option. Getting a definite diagnosis would not help me in any way, just confirm what I already suspect.

I am in this condition because I did not know what I had for 62 years and was misdiagnosed and mistreated and given medications I did not need which obviously caused great damage, unfortunately.

It is our HOPE at The Periodic Paralysis Network, that much of this can be avoided for most of you!

Calvin and I created our website, this Support and Educational Group and wrote our book to share with everyone how to avoid becoming as bad as me.

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 such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members.

Due to our work, we have been recognized as a patient advocate organization. We are here to advocate for your rights and medical safety as well as providing the information needed to treat your symptoms.

We are now a member of AdvocateDirectory.org

"This list of links and websites is presented solely as a resource for patient advocates and other individuals who seek information on patient safety and quality."

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

http://www.advocatedirectory.org/advocate-directory

We are here to help you be the best you can be!!!!!!!

More information about Dysautonomia:

http://www.dysautonomiainternational.org/

http://en.wikipedia.org/wiki/Dysautonomia
 


Until later...

Hope For Individuals With Periodic Paralysis

Hello All,

I am struggling today, especially with my breathing and speech. Early last evening I went into a full body paralytic episode. It lasted for a few hours, and I was thankful that I was able to fall asleep for part of it. As usual, I could not open my eyes or speak. After I slipped into it, my head fell forward and thankfully Calvin noticed right away because it was getting painful. He reclined my chair back and fixed my head. He put a blanket around it so it could not fall to either side and become painful. Then I fell asleep. After I woke up, it was quite a while before I was able to open my eyes. I could finally see the TV and Christmas tree lights again. It was a little while longer before I could move my fingers. I was surprised at the time; much later than I thought. Calvin helped me to the bathroom...always the most embarrassing for me and then to bed. Thank you Calvin. I love you too.

Hope For Individuals With Periodic Paralysis

What is hope? According to Longman Dictionary of Contemporary English ¹ hope is “a feeling of wanting something to happen or be true and believing that it is possible or likely.” Another dictionary states hope is a "feel[ing] that something desired may happen". Hope is a sense or desire that things will turn out for the best. The word hope may be used as a noun or a verb. ²

In terms of my life with Periodic Paralysis, which is a very rare, debilitating, metabolic disorder, many doctors, including the specialists, have told me that there is nothing they can do for me. I can take no medications, have no surgeries and I am in a gradually declining physical state. I would be dead now if it were not for my husband, Calvin’s research and fight for the things that now keep me alive and are giving me a better quality of life. He found that preparing and feeding me a pH balanced diet with needed supplements, providing me with oxygen therapy, helping me to discover and avoid my triggers, sheltering me from stress, keeping me hydrated, monitoring my vitals and remaining optimistic brought me back from the brink of death and reduced my paralytic episodes from 4 or 5 full body attacks a day lasting several hours at a time to 1 or 2 less severe episodes a month!

He had hope. He had a desire that things would turn out for the best. He was correct in what he did and how he did it and was optimistic that I would get better. He maintained hope that I would improve in all ways and the truth is that I did. Since that time, because of his hope and optimism, we wrote and published, six months ago, the first book about Periodic Paralysis. It is about how he maintained hope and brought me back from near death, to being able to write a book about it.

Not long after Living With Periodic Paralysis: The Mystery Unraveled was published, someone from another PP organization dared to write me and tell me that my book did not provide “hope” for people with Periodic Paralysis. This person obviously did not read all 430 pages; in fact they probably did not read even the front matter of the book or the Table of Contents.

The word “HOPE” first appears on page iv in the Table of Contents where Chapter Eleven, “Reality and HOPE” is listed. It then appears on pages xi, xii, and xiii.  On page xii I write to my brothers: “I hope the things in this book will help you to find a better quality of life.”  Calvin uses the word “HOPE” on page xiii, in the first sentence of his Acknowledgements.

In my Introduction, on pages 4 and 5 I use the word “HOPE” six times in the last paragraph:

”We hope everyone reading this book will have a better understanding of Periodic Paralysis. If you have a form of Periodic Paralysis, we hope you can improve the quality of your life by following our natural and common sense plans and advice. If you do not have a diagnosis we hope our ideas will be instrumental in helping you to get a diagnosis. If you are a doctor or health care provider, we hope you will be able to recognize, diagnose and treat individuals with Periodic Paralysis correctly, in a timely manner. If you are a social worker, therapist, caregiver, family member or friend, we hope you will be able to offer the understanding and support needed to your patient, family member, or friend who has this condition with your newly gained information. We especially hope you will know that you are not alone.”

The final page in which “HOPE” appears is 384, in my Conclusion. I wrote: “Today was a ’“Precious Stone Day.’ I was able to write this and share it with you. I hope that after reading this book you will begin to have more  ‘Precious Stone Days’ and even some ‘Diamond Days.’”

The following are the pages in which the word, “HOPE” appears:

 
hope, xi, xii, xiii, 3, 5, 54, 69, 75, 93, 174, 177, 189,  224, 226, 258, 299, 300, 304, 312, 325, 330, 336, 338, 339, 343, 358, 360, 365, 375, 379, 380, 384

My book, Living With Periodic Paralysis: The Mystery Unraveled was written in four distinct sections. The following is how the sections are described:

”After a lifetime of experience and taking over two and one half years of experimentation, detailed research and tremendous study to write, living with Periodic Paralysis answers all of the questions of the what, when, where, how and why of Periodic Paralysis and unravels all of the mysteries of this rare condition. Part One contains an account of my medical issues from birth until the present, in the hope of creating a scenario for which doctors and patients alike may be able to recognize the disease in its early stages. Part Two of the book covers every aspect of Periodic Paralysis. It is written in an easy to understand format. Each chapter is written with brutal honesty, and contains what the other books, discussion boards or medical sites about Periodic Paralysis on the Internet will not tell you. It is based on my experiences and what we learned through them. Part Three discusses the natural methods and technical information used to manage the symptoms based on years of research and experimentation. Part Four deals with the again brutally honest emotional, psychological and social aspects related to living with Periodic Paralysis for the patient, caregiver and family not found anywhere else.”

Over 200 pages, the entire second and third parts or sections of this book, are entirely devoted to understanding Periodic Paralysis and offer an entire plan to improving ones life by using natural and common sense methods and ways to avoid developing complications.

Part Two: Understanding  Periodic Paralysis

 

Chapter   12:	What is Periodic Paralysis?	73
Chapter 13:	Andersen-Tawil Syndrome	81
Chapter 14:	What is an Ion Channelopathy?	95
Chapter 15:	Description of Paralytic Attacks	103
Chapter 16:	Potassium	115
Chapter 17:	Triggers	121
Chapter 18:	Prognosis	127
Chapter 19:	Complications	135

Part Three: Managing Periodic Paralysis

Chapter 20:	Treating and Managing Periodic Paralysis	181
Chapter 21:	Educating Yourself	187
Chapter 22:	Discovering Your Triggers	193
Chapter 23:	Relieving Your Symptoms	205
Chapter 24:	Monitor Your Vitals	223
Chapter 25:	Finding a Doctor Who Cares	235
Chapter 26:	Getting a Clinical Diagnosis	245
Chapter 27:	Assembling and Directing the Team	261
Chapter 28:	Directing the Paramedics	267
Chapter 29:	Directing the Emergency Room Staff	277

Although I remain in a continual gradual decline, due to several wrong diagnoses, improper treatments and wrong medications over 62 years, which all caused permanent damage, I know that most everyone else with Periodic Paralysis will not end up like me. I have hope and am optimistic that most individuals can tolerate the medications available and maintain a fairly normal and productive life. I remain hopeful that those with forms of Periodic Paralysis, which do not respond to the medications or are made worse by them, can follow the plan laid out in our book, improve their conditions and live a much more normal and productive life. I remain hopeful and optimistic because I see it happening everyday to the people in our PPN Support and Education Group and to those who are reading our book. We share our knowledge and experience and everyday we see and hear about the lives being changed for those who are willing to make the lifestyle changes. It is not an easy path for us. We must walk a constant tightrope, but we do not give up hope.

                      

Living With Periodic Paralysis: The Mystery Unraveled, offers HOPE to everyone with Periodic Paralysis.

1. p://www.ldoceonline.com/dictionary/hope_2
2. "Hope | Define Hope at Dictionary.com". Dictionary.reference.com. 1992-11-27. Retrieved 2012-10-02.
   
   
   Until later…

The How and Why of our Book?? 'Living With Periodic Paralysis: The Mystery Unraveled'

Hello All,

They say, “Invention is born out of necessity”. Our book, living with Periodic Paralysis: The Mystery Unraveled was “invented” or written out of necessity and urgent need. The fact is when we began writing there were no other books written about Periodic Paralysis (PP) and information on the web was scattered and sketchy at best or too difficult to understand for the average person. There was then and is now an urgent need to educate those with the different forms of Periodic Paralysis and their family members on all aspects of the disease including how to manage and alleviate their symptoms. There was and is also an urgent need to educate the medical professionals dealing with those individuals, and their families, to learn to recognize, diagnose and properly treat their patients in a timely manner.

After a lifetime of illness, misdiagnoses and mistreatment (some of which caused irreparable damage), three years ago at the age of 62, I finally discovered the name of the progressive disease that left me totally and permanently disabled with weak muscles throughout my body, intermittent periods of total paralysis, along with heart problems, breathing problems, blood pressure problems and exercise intolerance. Years of testing had ruled out all of the commonly known neuromuscular diseases. I had to look for something outside of the norm or for the "zebra", as one of the over 30 doctors I had seen over the past 6 years had called it and I had to do it myself.

One day as I searched the Internet, I came across a disease called Periodic Paralysis. The symptoms were exactly what I had been dealing with. I was shocked and the more I read, the more I knew Periodic Paralysis was the disease that was affecting me. I wanted to know more about it. I wanted to know so many things. I wanted to know the what, when, where, how and why of it. What type of disease is Periodic Paralysis? When was it discovered? Where can I find more information? Why did I get it? How can I get diagnosed? Is there medication or treatments that can help ease the symptoms? What type of doctor should I see? What is the cause? Is it a hereditary disease? Is it acquired? Where can I find a doctor who can treat my symptoms? What type of doctor do I need? Is it a hereditary disease? Is it acquired? How did I get it? Is it reversible? Are there different types of PP? What can I expect for my future? Am I dying? Are there others like me? Where could I find them?

I had great difficulty finding the answers to these questions. I found bits and pieces scattered throughout the Internet, enough, however, to be able to understand some basics about Periodic Paralysis, but it became painfully aware that there was very little information and very little help to be found for people in my situation, that is, having definite symptoms of the disease but no diagnosis. My husband Calvin and I began to research Periodic Paralysis and began to pull together every bit of information we could find to answer my many questions and to get a diagnosis. We hoped that a diagnosis would bring the opportunity for proper medication and treatment.

Based on the information we were able to find, Calvin put together a kit of medical equipment needed to monitor my symptoms. He also created a form to track the data as he painstakingly recorded it before, during and after my episodes. Over a two-year period, we experimented with various forms and amounts of potassium. We experimented with some medications. We experimented with diets. We experimented with oxygen therapy. We experimented with physical therapy and my tolerance for exercise. Calvin literally saved my life without the aid of any medical professionals. Armed with our documented results, my medical records and with the cooperation of a few open-minded doctors, I eventually received a diagnosis. 

Using the above information and the skills we learned as special education teachers, we created a website and discussion board for others who have symptoms of PP and cannot get help anywhere else. The Periodic Paralysis Network (PPN) was created to provide a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. We discuss issues relating to Periodic Paralysis in practical language. This book is an extension and culmination of our website. It is our intention to help others using our discoveries through this book.

Some of what I wrote was formulated and created in my mind during the periods of time I was partially or totally paralyzed. After regaining muscle strength, I would type my recollections and ideas. I recalled a lifetime of illness and gradual disability,  loss of a teaching career, mistreatment by medical professionals, disregard by family members, and a loss of friendships.  During the writing of this book, I researched, read and studied everything I could find about every aspect of the different forms of Periodic Paralysis. Due to Calvin’s research and his ability to save my life, together, we created the plan for naturally managing and treating many of the symptoms  of  Periodic Paralysis. This included reducing the number and severity of the paralytic episodes. It also included a pH balance diet, discovering triggers, finding amenable doctors.  The periods of paralysis were also times I could recall the psychological, emotional and social aspects of the cruel disease. I believe these to be very important issues of which no one has written and they needed to be included in this book.

So, after living with Periodic Paralysis for my entire life and after more than 3 years of research, reading, studying, referencing, experimenting, personal experience and hours and hours of typing, retyping, and editing, living with Periodic Paralysis answers all of the questions of the what, when, where, how and why of Periodic Paralysis and unravels all of the mysteries of this rare condition. Part One contains an account of my medical issues from birth until the present, in hopes of creating a scenario for which doctors and patients alike may be able to recognize the disease in its early stages. Part Two of the book covers every aspect of Periodic Paralysis. It is written in an easy to understand format. Each chapter is written with brutal honesty, and contains what the other books, discussion boards or medical sites about Periodic Paralysis on the Internet will not tell you. It is based on my experiences and what we learned through them. Part Three discusses the natural methods and technical information used to manage the symptoms based on years of research and experimentation. Part Four deals with the brutally honest emotional, psychological and social aspects related to living with Periodic Paralysis for the patient, caregiver and family.

All that we have written is as factual as possible. We make no apologies for our honest evaluation and interpretation of what we have experienced. We make no apologies for telling the truth. We have not hidden the reality of this cruel disease nor sugar-coated it in any way. It is with honesty, candor and with urgency that we present the facts that follow to the reader.

It is our hope that the medical professionals dealing with individuals with Periodic Paralysis may come to our site or read our book and learn more about how to recognize, diagnose and properly treat their patients in a timely manner.

living with Periodic Paralysis: The Mystery Unraveled is available in paperback, Kindle and eBook formats on Amazon.com and through our website, http://www.periodicparalysisnetwork.com/index.htm  

living with Periodic Paralysis

by

 Susan Quentine Knittle-Hunter

B. S.  Special Education

B. S.  Psychology

&

Calvin Hunter

 M.S. Information Technology

M. Ed. Special Education

B.S. Psychology

B.S. Behavioral Science

First Edition

Periodic Paralysis Network, Inc.

2013

                             Table of Contents

Foreword One by Rose M. Watne MSW, LCSW	vii
Foreword Two by Laurel Keith, Phlebotomist	ix
Author’s Preface by Calvin Hunter	x
Acknowledgements by Susan Q. Knittle-Hunter	xii
Acknowledgements by Calvin Hunter	xiii
Introduction by Susan Q. Knittle-Hunter	1

Part One: My life with Periodic Paralysis

Chapter 1:	Alone in the Dark	9
Chapter 2:	My Childhood and Teen Years	15
Chapter 3:	Babies and Young Adulthood	19
Chapter 4:	Physical Problems Begin	25
Chapter 5:	College and Building a Cabin	29
Chapter 6:	Teaching	33
Chapter 7:	Giving Up Teaching & Becoming  Disabled	37
Chapter 8:	Moving, More Diagnoses and Doctors	41
Chapter 9:	The Big “Seizure”	49
Chapter 10:	Periods of Paralysis and a Diagnosis	53
Chapter 11:	Reality and Hope	63

Part Two: Understanding  Periodic Paralysis

Chapter 12:	What is Periodic Paralysis?	73
Chapter 13:	Andersen-Tawil Syndrome	81
Chapter 14:	What is an Ion Channelopathy?	95
Chapter 15:	Description of  Paralytic Attacks	103
Chapter 16:	Potassium	115
Chapter 17:	Triggers	121
Chapter 18:	Prognosis	127
Chapter 19:	Complications	135

 

Part Three: Managing Periodic Paralysis

Chapter 20:	Treating and Managing Periodic Paralysis	181
Chapter 21:	Educating Yourself	187
Chapter 22:	Discovering Your Triggers	193
Chapter 23:	Relieving Your Symptoms	205
Chapter 24:	Monitor Your Vitals	223
Chapter 25:	Finding a Doctor Who Cares	235
Chapter 26:	Getting a Clinical Diagnosis	245
Chapter 27:	Assembling and Directing the Team	261
Chapter 28:	Directing the Paramedics	267
Chapter 29:	Directing the Emergency Room Staff	277

Part Four: Psychological and Social  Expectations

Chapter 30:	Seeking a Genetic Diagnosis	285
Chapter 31:	Emergency Room	303
Chapter 32:	Doctors	313
Chapter 33:	Caregivers	327
Chapter 34:	Friends	347
Chapter 35:	Family	353
Chapter 36:	Conclusion	373
	Afterword	383
	About the Authors	385
	Appendix	387
	Works Cited	397
	Bibliography	405
	Index	419

CreateSpace:https://www.createspace.com/4111713
 
Amazon:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

So now you know the how and why of our book living with Periodic Paralysis: The Mystery Unraveled.

Until Later...