Serene Forest

Saturday, November 30, 2013

Pharmaceuticals Are Not the Answer For Some Rare Diseases

Hello All,

I had another great day!!!! I was able for the first time in three years to have Calvin drop me off somewhere and be able to drive away. He drove me to the cottage on the beach where my daughter and son-in-law were staying, visited for a while and then drove to town to run some errands. I had my portable oxygen, which lasts for about 4 hours. The cottage had a huge bay window looking out into the Straight of Juan de Fuca. We sat in front of a roaring fireplace and visited as we saw Victoria, Canada across the bay and watched the ships as they passed.

I realized, however, that although I did not have that horrible fog I had been experiencing any longer, I still have issues with exercise intolerance. Just talking for a while and then having a snack proved to be too much, I went into arrhythmia and become weak, but I avoided paralysis. I had to be very careful after that, however.

Calvin told me later, that other than leaving me in the hospital a few times, it was the first time in three years he felt he could leave me like that. He said he felt sad driving away, but he knew I was in good hands and it was good for him and him to do that.

My visitors must leave today, I will miss them very much, but I will get back to my "work" of teaching the world about Periodic Paralysis.
Today, I want to share an article I wrote a few months ago. 
Pharmaceuticals Are Not the Answer For Some Rare Diseases

Some rare diseases cannot use pharmaceuticals for treatment. There are other options, but there is no help to obtain them.

I have a disease called Periodic Paralysis. It is a very rare, debilitating, hereditary and difficult to diagnose disease. I was 62 when I was finally diagnosed, 6 years ago. It is a mineral metabolic disorder called an ion channelopathy. It is often misdiagnosed and mistreated, thus causing more damage or possible death to the person with it. There are several forms of it and the type I have is the most rare and the most serious type.

 On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, etc., potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full-body lasting hours or days during which severe life-threatening symptoms may occur. Due to these complications, it is extremely important to avoid the episodes. Permanent muscle weakness may occur over time. If it affects the breathing muscles it can become terminal.

There are no known cures, but there are treatments and drugs for some forms, which can be and are successful for some individuals.

My husband and I are the co-creators and managers of an independent organization, the Periodic Paralysis Network (PPN), which is patient-safety-related due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not treated correctly. We have a website, a discussion board and support group on Facebook to help others with support and the natural methods (pH balanced diet, supplements, oxygen) we have discovered.  We also provide methods and ideas on how to find doctors, get a diagnosis, get the proper help in the ER, how to discover their triggers, and much more.

Many patients have difficulty getting diagnosed and treatment in the US and the same problem exists around the world. We have people contact us nearly every day from all over the world, Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Canada, Finland, Australia, Mexico, to name a few, who are seeking help for themselves, their children and entire families and are unable to find it anywhere.

For some, medication can help but they cannot get medication. Some need a diagnosis but cannot find doctors who know enough to diagnose it. Many, many people are suffering with this disease and getting no help. The quality of their lives is being destroyed and some are even dying, needlessly.

 With this information in mind, a few months ago, in my position as manager of the PPN, I received an email from an organization, which is described as a driving force behind programs that provide services for patients with rare diseases. The email was seeking input about improving the methods and time frame for processing pharmaceuticals for treating rare diseases.

Though I am not a doctor, researcher or physicist and had some difficulty understanding some of what was written; I understood enough to form some comments and then added a few questions regarding these issues. I quickly wrote a response hoping for some information about the possibility of services for “patients” with Periodic Paralysis, a rare disease. I wrote the following letter.

”I understand that this process has been designed to expedite the discovery, research and use of new medications or pharmaceuticals in rare, very rare and extremely rare diseases. This is definitely something I can agree with. There is a need to expedite the process as many of us are dying. I happen to be one of those people due to a lack of treatment. I agree also with the key-considerations of the benefits and risks of a faster time frame because there must be safeguards in place.

That being said, the condition I have is an, as yet, undiscovered variant of Andersen-Tawil Syndrome (ATS), which is probably unique to my family and me. Our DNA is being studied at Baylor, therefore, it an extremely rare form of Periodic Paralysis, which is an inherited ion channelopathy. Part of the problem with expediting the making of medications to treat a condition, is that it is useless for me and others with ATS because most of the patients with ATS, are not able to take any medications or pharmaceuticals because they are actually triggers for our severe symptoms of paralytic episodes, which include partial to total body paralysis, difficulty breathing, low oxygen levels, heart arrhythmia including dangerous/sometimes fatal long QT interval heart beats and torsades de pointe, fluctuating heart rate, fluctuating blood pressure, cessation of breathing, choking, possible cardiac and/or respiratory arrest.

What we need is a way for timely and better diagnosing so treatment can begin early thus avoiding an outcome like mine; getting a diagnosis at the age of 62 for a disease I had my entire life. I was misdiagnosed over and over and treated with pharmaceuticals, which almost killed me and have left me totally disabled and terminal with no treatment as I progressively decline.

At this time, Periodic Paralysis is diagnosed by a process of elimination, which takes years, in my case a lifetime, and either clinically; based on symptoms and characteristics, which can be subtle or absent or genetically; genetic testing which can take years and is only done in a few places in the world. The problem with these options is, first, most doctors and even the specialists do not understand it well enough to diagnose clinically, and second, the genetic testing will only reveal about 50% to 60 % of the overall types of PP/ATS. The remaining 40% to 50% of forms are, as yet, unknown. An individual with an unknown variant has symptoms indistinguishable from those with the known mutations.

We need something better than this. Many people are dying from the improper medications due to misdiagnosis and by provoking their symptoms in an attempt to get a clinical diagnosis.

Genetic research has been in place for over 25 years. Blood samples from all over the world are studied and then in a year, 2 years, 4 years, or one family has been waiting 9 years, an individual will get his letter stating he has no known form of PP. This wrongly sets up the patients to believe that they do not have PP, though as stated above, 40 to 50 % of them have a variant, which has not yet been discovered. In the meantime there is no help and no treatment until or unless a mutation is discovered. To date I know of no known treatment from these studies and no faster or better method for diagnosis.

This has to stop!!! There must be a better way, a set of better guidelines, better education of medical professionals to be able to diagnose this cruel disease in a more timely manner, and perhaps rather than funding for the discovery of only 50% of genetic codes the money can better be used to research for proper diagnosis, treatment and management.

There are doctors who are associated with an organization specifically for researching and treating diseases affecting muscles. Although Periodic Paralysis is not a muscle disease but rather a 4th class mineral metabolic disorder, it is accepted as one of their diseases. These doctors are supposed to know about and treat PP. However, but most of them, (I have been to 4 of them), did not diagnose it in me and in fact set my diagnosing back years, thus contributing to my present condition, totally disabled and terminal. Again, I suggest if these specialists and this organization are receiving funds for diagnosing, treating and research of PP, then that money should be going elsewhere for those of us with PP or for proper education of those doctors to recognize PP/ATS based on present day criteria.

There are other types of PP in which some drugs are used with good results, for a few, but not without short term and serious long term side effects,  but for the more rare forms, we are out of luck.

My husband and I have written a book about Periodic Paralysis and discuss these issues in it. Living with Periodic Paralysis: The Mystery Unraveled was published last month. This was in part due to a program coordinator for the organization treating muscle diseases telling me that I need to teach their doctors about Periodic Paralysis! We also have a website, the Periodic Paralysis Network and forum for individuals who have PP and most of our members are unable to get a diagnosis, or treatment. They are living in limbo with no help from the medical field. We have created a plan that helps us naturally with diet, avoiding triggers and by monitoring our vitals, especially monitoring our potassium levels.

There is a device, a potassium reader, which we use to help us to know how to treat our symptoms based on the level of potassium in our blood. Unfortunately, this device costs $350.00 and is not a medical device so insurance will not pay for it. Most families do not have that kind of money, thus making monitoring of symptoms very difficult.

Rather than medications, we use those devices to help us relieve our symptoms and stay alive by avoiding paralytic episodes. We could use funding for those devices and working with the FDA and the company that makes the devices can help us to have them deemed as medical devices so insurance will pay for them.  We are not yet incorporated but hope to be soon, with funding from the sale of our book. We hope to be able to raise money to purchase potassium meters for those who need them.

Pharmaceuticals are not the answer for some rare diseases. The above issues are the type of help we need. Do any of our concerns or issues meet your requirements to receive assistance under your “commitment to fulfill unmet need for patients” with rare diseases? I would love to work with you if that is the case.”

I continue to wait for a reply, although today, I received another e-mail from them asking me to write a letter or call my representative in Congress in order to pressure them to pass the now completed Bill.

All the while I am hooked up to an oxygen tank, confined to my bed, recliner or power wheelchair, with my computer in my lap as I continue to work to improve the lives of individuals with all forms of Periodic Paralysis. I am creating a set of better guidelines for diagnosing PP, writing my next book for better education of individuals of with PP and medical professionals, attempting to raise awareness of PP in the world, marketing my book to raise money for potassium readers as I am in and out of paralysis and muscle weakness. You see; pharmaceuticals are not the answer for some rare diseases. Who will help us? Who will take my place when I am gone?

Until later...

Update 12/19/2016:
We now have written and published four books related to Periodic Paralysis.

Thursday, November 28, 2013

Periodic Paralysis and Balance November 28, 2013

Happy Thanksgiving to our readers in the USA!!!
About two weeks ago, physically, I could not even get out of my recliner and I was in a brain fog, and more. I felt miserable. I mentioned it in some of my previous blogs. I have had varying degrees of this for many, long months and it was getting worse.
I had to evaluate what the trigger was so I could stop it or avoid it. I just could not face one more day of feeling like I was dying. I studied my diet, which is organic and free of additives, pesticides and pH balanced. I monitored my vitals and my potassium and glucose levels, which were normal. I decided the only other thing out of the ordinary was my supplements. I had been taking them for nearly three years. They are pure and free of gluten, sugar, etc with no fillers. I decided to experiment, however, and stopped taking them.
Since that day...I have been able to get out of my recliner and the fog has lifted!!! My world has color again!! No more shades of gray!! I have more energy. Calvin has been shocked at the difference and continues to caution me to not do too much.

I have been able to prepare an entire Thanksgiving dinner!! Each day I made one thing and froze it or packaged it until today. I will be putting my own turkey in the oven in a little while! My daughter and son-in-law arrived last night and I was able to serve them gluten free and low sugar pumpkin pie that I made, as well as, to be able to visit with them without going into paralysis.
I believe that the problem was taking supplements that I did not need any longer. It was throwing my body out of balance. I may need them again in the future, but not now. As my symptoms wax and wane in the future, I will need to evaluate why, but I know now that I should not put anything in my body I do not need. Those of us with Periodic Paralysis must walk that fine line...We must “walk the tightrope”

Periodic Paralysis is an ion channelopathy. Ion channelopathies are mineral metabolic disorders. Periodic Paralysis is a 4th class mineral metabolic disorder. As such, it appears that anything may affect the balance…we must continually evaluate and re-evaluate each thing we are putting into out body.

Until later…

Monday, November 25, 2013

Periodic Paralysis Diet November 25, 2013

Hello All,

I was asked to describe the diet discussed in our book Living with Periodic Paralysis: The Mystery Unraveled, the pH balanced diet, also know as an alkaline diet.

I must first begin by explaining there are different diets for Hypokalemic Periodic Paralysis and Hyperkalemic Periodic Paralysis.

This is a link for a better diet for Hypokalemic Periodic Paralysis: basically low sodium and low carbohydrate diet:

This is a link for a better diet for Hyperkalemic Periodic Paralysis: basically low potassium and acid:

That being said, it is important to understand that Periodic Paralysis is a mineral metabolic disorder. Due to this our bodies can easily become out of balance. We can especially become acidic with the American diet, thus creating many of our symptoms and leaving us weak and possibly trigger our paralytic attacks.

We believe that "balance" is the key: 70/30 alkaline/acid, low salt, low sugar, low carb, no processed food what-so-ever (They are highly acidic), no gluten (if necessary, .one of my biggest triggers), low fat and as much organic as possible. You must reduce the acidic food or keep them reduced to 30 % or less of what you eat. One is permitted to eat anything, but less of the acidic foods and more of the alkalinic foods. As one of our members said, "not low carbs but controlled carbs."

Many of us with various forms of Periodic Paralysis cannot get medications and/or cannot take them. I was basically dying due to this fact. My husband and I researched and experimented and discovered the best way to reduce my periods of full body, total paralysis lasting hours at a time and occurring 4 to 5 times a day and all night, was with a pH balanced diet, also know as an alkaline diet. We added supplements and I avoided all of my triggers except sleep (have to sleep) and began to use oxygen for my exercise intolerance.

By the end of 6 months, my episodes were reduced to 1 or two a month and I had lost 25 pounds, my A1C levels were down to normal ranges and my cholesterol levels had been reduced significantly. I was able to function more normally and continue to be much better than when I started the diet three years ago.

Now that I have become balanced, I find I have needed to add a bit more salt, sugar, carbohydrates and fats and am able to cut back on the supplements. 
Lifestyle changes are difficult at first, but the results are well worth the effort. I have regained my life in most ways. The following are links to more information on the pH balanced diet.

We are “Changing our lives naturally”…

Until later…

Saturday, November 23, 2013

Periodic Paralysis and Iatrogenic Illness? November 23, 2013

Hello All,
The word “iatrogenic” refers to any type of inadvertent, adverse condition or illness, which is the result of a medical professional’s activity, therapy or manner. In my opinion this also refers to the inaction of a medical professional, which results in an adverse condition.
I am the co-founder and co-manager of an independent, advocate, health organization, the Periodic Paralysis Network. We work towards the improvement of the quality and safety of patients from all over the world with the various forms of Periodic Paralysis (PP) a very rare, inherited, disabling mineral metabolic disorder. Our focus is on educational resources to build self-reliance and self-empowerment and to prevent possible harm from improper treatment. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods. We also offer strategies to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. We are patient-safety-related due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not treated correctly.
The Periodic Paralysis Network has a forum containing three distinct discussion groups. I moderate these forums and in that capacity I am continually researching all of the aspects of the various forms of Periodic Paralysis. I attempt to locate the latest studies and any other information, which may help our members in dealing with their symptoms and understanding this condition.
This morning, as I was doing my normal research, I was introduced to the word “iatrogenic”.  A support and education organization exists for individuals who have been the victims of “iatrogenic” medical treatment resulting in adverse conditions or illnesses. They use this term in their title. I was researching groups for victims of malpractice, because many of our members, myself included, are survivors of malpractice and negligence at the hands of medical professionals due to the nature of our disease.
The following is in part, what I wrote to our members after my research:
“In my research today I learned a new word which can apply to those of us with PP in several ways:
iatrogenic /iat
·ro·gen·ic/ (i-ă´tro-jen´ik) resulting from the activity of physicians; said of any adverse condition in a patient resulting from treatment by a physician or surgeon.
i·at·ro·gen·ic (-tr-jnk)
Induced in a patient by a physician's activity, manner, or therapy.

After researching the word,
“iatrogenic”, I believe that most of those individuals with Periodic Paralysis have been on the receiving end of this, especially the wrong diagnoses we have received and the wrong administration of drugs for wrongly diagnosed conditions. Also, by the administration of certain drugs for our condition that are harming us by causing kidney stones and metabolic acidosis and even death in a few cases. This is usually inadvertent (not on purpose, of course, in most cases).

Here is a study for instance, that makes me wonder about my own situation. I definitely had symptoms and signs of PP since I was a young child. All of my life was a gradual, chronic progression towards being deemed disabled at 50. However, something happened afterward that suddenly thrust me to where I am today, totally disabled and unable to do much of anything without causing paralytic episodes and risking death each time due to the life-threatening arrhythmia which accompanies them.

Just before the "big seizure" I had 3 years ago, I was on 15 medications including an experimental drug for severe osteoporosis. I had to inject myself every night with a syringe filled with the drug into my thigh. I suddenly had a seizure-like, stroke-like event, which left me totally unable to care for myself. I had to be bathed, dressed, fed etc. I had to learn to walk again. I never recovered to the condition I was before the seizure, which was not good to begin with due to my wrongly diagnosed condition. Was one or all of these medications the cause for this event and permanent damage? There is no doubt that I am in my present physical condition due to “iatrogenic” treatment.
As I continued to research “iatrogenic”, I discovered an article/study, which discusses the iatrogenic effects of statins, the drugs used to reduce cholesterol. I personally, was put on every type there was over a period of several years. Each time it created a condition called rhabdomyolysis, serious painful muscle wasting. The pain was excruciating in my calves and now never goes away, a definite “iatrogenic” effect. Every time I went to my doctor and told him I had to stop the new one he gave me, he got angry and on one occasion he threw something across the room!! (Needless to say...I found a new doctor.)

The following is what this study indicates:

"…statins may also initiate immune-mediated forms of necrotizing and inflammatory myopathy and unmask or aggravate various metabolic myopathies and other neuromuscular disorders."

Periodic Paralysis is a mineral metabolic disorder affecting the muscles in our body. How many of you have been on statins or are now on statins?? How many of you have had your paralytic or weak muscle symptoms worsen since using the statin?? Could statins have been a trigger for some of us? Did the use of a statin result in “iatrogenic” illness.

Since so little is known about Periodic Paralysis, we need to be our own experts about our own bodies and our own disease!!!!! If you are on any medications, regardless of the fact they may be for your particular form of PP, please study it thoroughly. That includes the use of anesthesia. If you do not study it by really digging and searching for "RARE" side effects or go to a website where people are suing over the use of a drug to discover these things, they can be overlooked by the doctors or yourself.
I know of a few cases recently among members of our boards in which, certain anesthesia thought to be permissible for someone with ATS, a form of PP, turned out to possibly cause long QT heartbeats and other cardiac issues, muscle weakness and respiratory issues. One member was in the hospital for almost a month, after a procedure, due to those side effects and issues. This was a definite  “iatrogenic” result. After researching it as described above, I found the hidden information.
I believe that this new word, “iatrogenic”, also can apply to those individuals with Periodic Paralysis who become more ill due to the lack of a diagnosis. Many of our members have been waiting years for a diagnosis. (I was not diagnosed until the age of 62.) Most doctors are reluctant to diagnose the various forms of PP although everything else has been ruled out. They insist that a patient must have a genetic code found during DNA testing. The problem with this ideation is that nearly half of all individuals with PP have no known genetic code discovered yet and may never have in their lifetime. So it must be diagnosed based on symptoms and characteristics. This is called a clinical diagnosis, the manner in which most diseases are diagnosed.

So if doctors are withholding a diagnosis or failing to diagnose due to out of date information or a lack of proper understanding and knowledge of the disease and thus patients are not getting proper treatment, these individuals are becoming more ill and or dying due to "iatrogenic" medical treatment.

Our boards are here to help educate everyone on how to better understand Periodic Paralysis. We are searching everyday for better answers to our questions and our needs. We place the information we discover on the boards everyday. It is up to you how to use it. We must all make decisions about how to deal with our symptoms and conditions, but we must make "educated" decisions. It seems we cannot simply follow the lead of our doctors. In most cases we know more than they do about Periodic Paralysis and how it affects us. So those of us with PP must be our own best experts with our disease, because no one else is watching out for us.”
Until Later...

Friday, November 22, 2013

Walking the Tightrope Using The Plan November 22, 1013

Hello All,


Several members have been having suffering with ups and downs of their symptoms and also develop new symptoms without knowing what if triggering it. The following is what I wrote this morning.

”I am so sorry you are going through this. I have to admit that I too, have been on the same roller coaster for quite awhile, however, in the past few days I made some important discoveries for myself, and maybe for others. This is what I have discovered:

I posted the following yesterday in response to a question about potassium gluconate. It is so simple but had a profound effect on me:

Differences in the three main types of potassium:

Potassium citrate (and potassium bicarbonate) is alkaline, potassium gluconate is neutral PH, potassium chloride is acidic.

Periodic Paralysis is a metabolic disorder and we can have issues with being out of balance metabolically. We can become acidic or alkalinic. I know that I have issues with chronic metabolic acidosis and lactic acidosis. I have been diagnosed with both and keep track using a pH meter. So, if you tend to be acidic (metabolic acidosis or lactic acidosis) potassium citrate (and bicarbonate) might be best. If you tend to be alkalinic (metabolic alkalosis) potassium chloride might be best. If you do not have acidosis or alkalosis than gluconate may be best..."

If we do not maintain that balance we become unsteady on that tightrope we must walk! We have to maintain that is a constant battle!

So realizing I was out-of-balance, over a period of several weeks, I stopped taking my potassium bicarbonate (and before that I was taking potassium citrate). I was still having issues so a few days ago, I stopped taking my magnesium citrate and calcium citrate and pro-biotics and my V-8 juice in the morning.

For as many days, I have not had the issues I was over-all fogginess, depression, cranky, agitated, severe fatigue and muscle weakness and what I can only describe as a feeling of "uuuuuhhhhhhh"...what I have considered to be an "abortive attack".

My conclusion is this: In our book, Living With Periodic Paralysis:The Mystery Unraveled describe "walking the tightrope"...walking that fine line ...we must stay in perfect balance... and we do that by following the "Plan" or we have symptoms of all kinds depending on what is out of balance...So...I apparently, got into balance doing all I was doing, but by continuing things I no longer needed, I was making myself sick again with too much of I did not need to continue with potassium bicarbonate routinely because by doing so I was becoming hyperkalemic...if I took more potassium thinking I needed it based on my symptoms.,. I was making it worse. I was also probably making myself too alkaline. I stopped it weeks ago but after doing fine for a few days I went downhill again.

After stopping the magnesium citrate and calcium citrate both alkalinic, probiotics and V-8, I have not had any of the usual symptoms, except for the day I went shopping with Calvin. That evening, I had extreme muscle weakness and shakiness. BUT...I did not have the other symptoms mentioned above, I was clear-headed and even-tempered and no "uuuuhhhh" feeling. (Proof of my exercise intolerance or exertion as a trigger. But also proof that exercise and exertion did not necessarily cause my other symptoms.)

My conclusions: I may need potassium at any given time depending on my symptoms, but not necessarily routinely. I may have needed magnesium and calcium for a while, but taking it routinely, may be making me worse. The V8 juice is probably more sodium and potassium than I need right now or it may be just one of them causing the issue. I will test it by introducing just one of them back into my routine at a time, until I feel those symptoms again. Then I will know which was the trigger.

The key for me is moderation in all to maintain that balance. Low salt, not no salt, low sugar, not no sugar (use my glucose meter), potassium if the potassium reader indicates I am low, no potassium bicarbonate unless I am acidic, no potassium chloride unless I am alkalinic (use my pH meter) and of course follow the pH balanced diet.

Will I still have bad days? Yes. Will I have more good days? Yes. Will I have to work at it? Absolutely. Will it be easy? No. Will it be worth it? Yes.

Until later...

Thursday, November 21, 2013

My Power Wheelchair November 21, 2013

Hello All,

Someone asked me why I use a power wheelchair when I have the ability to walk? Why don’t I force myself to walk? Why have I given up?

The following was my answer:

"Please do not judge me until you live a day in my life and understand the disabling and cruel medical condition I endure daily.

I am able to walk a few steps with the assistance of a walker or cane, but due to a very rare, hereditary, debilitating metabolic disorder called Periodic Paralysis my skeletal muscles and breathing muscles are weak and progressively getting weaker, permanently. This causes me to be very fatigued, off-balance and at great risk for falling. When I walk more than a few steps, I get out of breath right away, my oxygen levels drop, my blood pressure rises, and my heart goes into tachycardia. If I fall, I risk breaking bones from my severe osteoporosis or risk other injuries for which there is no treatment for me because I cannot use, anesthesia, antibiotics or most medications.

If I use them, I risk heart arrhythmia and many may cause a life-threatening arrhythmia called long QT heartbeat, which can kill me. I also risk going into paralysis. For me, these paralytic episodes can be full body lasting hours or days and are accompanied by the same dangerous heart arrhythmia; I am unable to open my eyes, speak or move in any way; and I experience heart rate fluctuation; blood pressure fluctuation; choking; breathing difficulties. Cardiac arrest and/or respiratory arrest can also accompany the episodes.

So, do I have the ability to walk??? Yes, I have the ability to walk. Should I walk??? No!!! I should not walk farther than to the next room with assistance. I am saving my life by using my power wheelchair!!! I am avoiding possible injury, serious paralysis and possible death.

Using a power wheelchair is important in other ways. If I am weak and in and out of paralytic episodes and or in an abortive attack (extreme muscle weakness and fatigue) and if I am in my wheelchair, I have an easier time of getting around and my husband has an easier time of helping me and moving me from place to place. He can control the chair and does not have to lift me (he is also disabled). The chair has a recline option due to the fact that even sitting up straight proves to be too much exertion for me and causes the symptoms mentioned above. If I slip into paralysis, he uses it to recline me further, as needed. I have a headrest, which keeps my head and neck straight. When in paralysis, my neck muscles go totally flaccid and my head will fall to the side causing great pain.

I am in pain 24/7 and can take no pain medications. My power chair has specialized cushions that help relieve the pain. It is also equipped to recline to a flat lying position every few hours, for proper blood circulation, which my husband or I can control as needed. I must be on oxygen around the clock and I am able to attach my oxygen to my power wheelchair, which is necessary and convenient.

My chair also gives me independence. I have a regular wheelchair but I need someone to push me around in it because I do not have enough muscle strength in my arms to propel myself. With my power wheelchair, I have the ability to go out my back door independently and go for “walk” in my forest or my neighborhood and visit my neighbors. I can shop by myself as I recline in my chair. Scooters in markets and other places force one to sit up straight and exert more energy by keeping one’s arms extended on the controls, so they are problematic for me. My power wheelchair has a special hand control I am able to use with my arms resting.

Can I walk? Yes! Should I walk? No! Is a power wheelchair the best option for me? Yes. Why do I use a wheelchair when I have the ability to walk? Although I can walk, I do not because I have permanent muscle weakness in my skeletal muscles and breathing muscles and walking and breathing are difficult for me and because I am avoiding possible injury, serious paralysis and possible death.

Do I look normal? Yes! Am I normal? No. Do I wish I could walk like everyone else? Yes. Do I wish I did not have to use a wheelchair? Absolutely. Am I giving up? No. I am trying to stay alive!"

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 and through our website,  

living with Periodic Paralysis


 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.

                             Table of Contents

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

Part One: My life with Periodic Paralysis

Chapter 1:
Alone in the Dark
Chapter 2:
My Childhood and Teen Years
Chapter 3:
Babies and Young Adulthood
Chapter 4: 
Physical Problems Begin
Chapter 5:
College and Building a Cabin
Chapter 6:
Chapter 7:
Giving Up Teaching & Becoming  Disabled

Chapter 8:
Moving, More Diagnoses and Doctors
Chapter 9:
The Big “Seizure”
Chapter 10:
Periods of Paralysis and a Diagnosis
Chapter 11:
Reality and Hope

Part Two: Understanding  Periodic Paralysis

Chapter 12:
What is Periodic Paralysis?
Chapter 13:
Andersen-Tawil Syndrome
Chapter 14:
What is an Ion Channelopathy?
Chapter 15:
Description of  Paralytic Attacks
Chapter 16:
Chapter 17:
Chapter 18:
Chapter 19:

Part Three: Managing Periodic Paralysis

Chapter 20:
Treating and Managing Periodic Paralysis

Chapter 21:
Educating Yourself
Chapter 22:
Discovering Your Triggers
Chapter 23:
Relieving Your Symptoms
Chapter 24:
Monitor Your Vitals
Chapter 25:
Finding a Doctor Who Cares
Chapter 26:
Getting a Clinical Diagnosis
Chapter 27:
Assembling and Directing the Team
Chapter 28:
Directing the Paramedics
Chapter 29:
Directing the Emergency Room Staff

Part Four: Psychological and Social  Expectations

Chapter 30:
Seeking a Genetic Diagnosis
Chapter 31:
Emergency Room
Chapter 32:
Chapter 33:
Chapter 34:
Chapter 35:
Chapter 36:


About the Authors


Works Cited





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

Until Later...