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Showing posts with label living with Periodic Paralysis: The Mystery Unraveled. Show all posts
Showing posts with label living with Periodic Paralysis: The Mystery Unraveled. Show all posts

Thursday, July 17, 2014

Exercise Intolerance




Hello All,

Many of the members of our PPN Support, Education and Advocacy Group write about and ask questions about puzzling and debilitating symptoms everyday. Most of these symptoms are actually related to exercise intolerance. I have decided today to share a passage from our book, living with Periodic Paralysis: The Mystery Unraveled about exercise intolerance. I hope it will answer some of those questions.


(The photo I did not share from the visit to the lake last week)



 Exercise Intolerance


“We know that there are two types of involvement of muscles in individuals with Periodic Paralysis. There are attacks of paralysis of the muscles, which are intermittent, and there is a myopathy or a progressive, permanent muscle weakness, which can occur. Some individuals experience one or the other and some experience both conditions, though it is less common to have both, and it is very rare to have only the progressive, permanent muscle weakness. If an individual develops the progressive, permanent form of periodic paralysis, it begins as exercise intolerance, usually in the legs and feet, which progressively spreads to the rest of the muscles in the body.  

In exercise intolerance the individual is not able to do physical exercise or exertion that would be expected from someone of his or her age and overall health level nor for the amount of time expected. He or she lacks stamina. The individual may also experience extreme pain and fatigue after exercising or exertion and other symptoms such as a feeling of heaviness in the muscle groups. Exercise intolerance is a symptom rather than a condition or disease. It is a common symptom found in several diseases including metabolic disorders. Periodic Paralysis is a mineral metabolic disorder.

Food and oxygen are normally converted into energy and delivered to the muscles but this cycle is disrupted in individuals with exercise intolerance. The muscles are unable to use the nutrients and oxygen and therefore, enough energy may not be generated to the muscles and he or she is left with little or no energy. The degrees of low energy can be mild or extreme and the symptoms may occur during exercise or exertion or they can occur later, even the next day.

Symptoms

Symptoms of exercise intolerance include: fatigue, muscle cramps, insufficient heart rate, depression, changes in blood pressure and cyanosis. Fatigue may show within minutes of beginning to exercise with shortness of breath or dizziness. This is a sign that sufficient oxygen is not being processed. For individuals with severe exercise intolerance this can happen after doing simple tasks such as eating, sitting up in a chair or writing.  Muscle cramping and stiffness also will appear within a few minutes of beginning to exercise. This can linger for days after the exercising. There may also be a delayed reaction of hours and the pain may begin while one is sleeping causing one to awaken.  The heart rate does not increase enough to meet the needs of the muscles during the activity. Depression is often seen in individuals with exercise intolerance. Not being able to do the things a person wants to do or should be able to do can create anxiety, irritability, bewilderment and hopelessness leading to depression. Standing up or walking across a room may be all that is necessary for an individual’s blood pressure to rise significantly. Cyanosis is a serious condition that indicates there is not enough oxygen in the blood. The individual may appear to look blue in the face and hands and needs immediate medical attention.

Exercise intolerance can be seen in the small muscle groups as well as the large muscle groups. Writing or other fine motor skills can be affected causing cramping, fatigue and spasms. Tachycardia (fast heart beats) can occur from increased breathing rate this during exercise or exertion and rapid breathing increases from fatigue of the diaphragm and chest wall. Vision may become blurry due to fatigue of the eye muscles. The oral muscles, those involving the mouth, may be affected making speech difficult and making chewing of harder or tougher foods a problem. 27, 28, 30, 31, 32

Diagnosing

Diagnosis would be based on the symptoms above and the diagnosis of the root cause, which in this case is Periodic Paralysis.

Treatment

For most individuals with Periodic Paralysis who have exercise intolerance, it is best to avoid physical activity and exertion because it can lead to muscle cell damage (muscle wasting), exhaustion and a condition called lactic acidosis, a form of metabolic acidosis (also discussed in this book). It also can be a trigger for attacks of paralysis. 35, 36

My Experience with Exercise Intolerance

My own symptoms of exercise intolerance began as having a problem keeping up with others in exercise classes, walking up inclines and stairs and later during and after physical therapy. I would get fatigued, out of breath and dizzy after only a few short minutes. I would develop terrible pain in my legs during the exercising or activity and would have to stop. The pain and fatigue would be worse the following day. This continued to gradually worsen until now it takes less and less activity to create the symptoms.

Now, I cannot walk more than a few steps at a time. I cannot sit up straight in a chair for very long to do a puzzle, sew or talk with friends.  I can no longer wheel myself in a wheelchair. I cannot talk on the phone for very long. Fine motor skills, like writing or sewing by hand, cause my hands and fingers to cramp. Any exertion or exercise causes my blood pressure to rise; I get short of breath, fatigued and will later go into an attack of paralysis.

A muscle biopsy revealed signs of muscle cell change or damage and replacement with fat or lipids. I have been diagnosed with metabolic acidosis and lactic acidosis, all related to the exercise intolerance from the progressive and permanent muscle weakness I experience due to the continued and unchecked (over the years before my diagnosis) shifting of potassium from Periodic Paralysis, which is a mineral metabolic disorder. “


Until later…

Tuesday, June 17, 2014

"This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II": Book Review by Guest Blogger Tammy


Hello All,

Calvin and I wrote and published the book living with Periodic Paralysis: The Mystery Unraveled, last year. I have written much about, but recently a member of our Periodic Paralysis Network Support, Education and Advocacy Group, Tammy Collins-Levi, wrote a wonderful review on Amazon.com after purchasing it and reading it. She discussed how it changed her life. We have decided, with her permission, to share it with you today.

Thank you so much Tammy for writing this and allowing us to share it with everyone!!



This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II

If you or someone you love is fighting the uphill battle of getting a diagnosis, this book is for you. I had been sick for years. I became seriously ill 4 years ago. So many opinions with out any educated knowledge followed. I cannot begin to tell how much was lost during the past years of having a rare illness. But Susan speaks my story perfectly. I had already been to Orlando to meet with many others that suffer from Periodic Paralysis and had my genetic DNA sent to Germany. It seemed like all the doctors kept putting me off with waiting on my results from Germany. As some of you might know this can take years and with my heart problems it could of cost me my life. I am 38, happily married, and a mom of four. This rare condition almost took my life many times. I was left drained and with brain fog that was hard to see through. I was searching for answers and others who had been told this is not real!

I bought Susan and Calvin’s book and was shocked that other people have suffered so badly. I was overjoyed to find someone that had taken time to tell the story with hopes of helping others heal! I realized it was time I pull it together and go through my records. I pulled all the facts. That is what matters to any other doctor and makes them stop in their tracks. I pulled all the labs, test, EKGs, EMGs, and left the doctors opinions in the dust where they belong!! “Hit them with the facts” Susan you hit that one right on the head. I had heard this from others, but with no true advice about how to do this. You guys walked me through it step by step. The organized thought process to getting through all the red tape and nailing down what is being missed is the best I have come across. And I am a fighter for what was lost. I have done countless hours of research and spent a ton of money traveling around the country to figure out what stole my health. This book is the best I have found to address it all.

I meet with my geneticist on June 15th and she took all my organized medical facts and gave me a 100% clinical diagnosis of ATS. She informed me my labs showed electrical heart dysfunction and I am scheduled to have a pacemaker and defibrillator in a few weeks. If I had given up she said I would of probably passed from sudden arrhythmic death syndrome. How sad that would of been for my big family that has fought right beside me to find answers.

To sum it up this book helped organize my foggy mind, lifted my spirits, and give me the drive to fight like Susan did to get a real diagnosis before it was too late. This book saved my life and opened up new doors to my future. My life is different, but at least I know what I am fighting now. That was a priceless gift that this book gave my family and I.

Read this book and follow the advice offered and it will lead you in the right direction. Because you have all been on a never ending roller coaster ride and it is time to get off. It is time to walk up to your fears and say it’s time to get this right this time. No more games. Your life is important! Remember it is your body that is failing and only you know how that feels. Don’t settle for a diagnosis that doesn’t fit or make sense.


Thanks Again Susan for standing up for us all!!!!!




Until later...

Saturday, February 8, 2014

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...

Tuesday, February 4, 2014

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


Saturday, December 14, 2013

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…

Wednesday, November 20, 2013

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...