Serene Forest

Monday, September 29, 2014

The Incorporation of Periodic Paralysis Network, Inc (PPNI)




Hello All,
Today I wanted to share our big news and give a little bit of background information into our organization, which is now formally a corporation. I would like to share our story.

After a lifetime of illness, misdiagnoses and medical mistreatment (some of which caused irreparable damage), three and one-half years ago at the age of sixty two, 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 conditions and diseases. I had to look for the “zebra”, as one of the over thirty doctors I had seen over the prior six years had called it and  I had to do it myself.

Once I realized that I had a form of Periodic Paralysis, I researched everything I could find about it and set out to get a diagnosis. The little information I found on-line was scattered and difficult to understand. I joined the few support groups and listservs available at the time but found them lacking in any kind of real support, information and absolutely no advocacy. In fact I was met with resistance. When I finally got diagnosed with Andersen-Tawil Syndrome, I was actually scoffed at because my diagnosis was not genetic.

The story of my diagnosis is long and involved, but Calvin, my husband, and I did manage to secure a diagnosis after unbelievable resistance and much work on our part.

During that 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 even while I was eating.

After my diagnosis in 2011, many doctors, including the specialists, told me that there was nothing they could do for me. I could take no medications nor could I have any type of surgery. I was dying from the lifelong effects of the condition and the wrong treatment and drugs I had been given over the years. After hearing this, the only thing Calvin had, nearly four years ago was hope and determination and a will to find a way to save my life. I would be dead now if it were not for his persistent 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 four or five full body attacks a day lasting several hours at a time, to one every two or three months!

After being ignored by the on-line doctors and being treated in such a despicable and unconscionable manner by members of the listserv and other support groups, I vowed to create my own website to help others with all forms of Periodic Paralysis and to treat the individuals in a manner that I wish I had been treated and to share what we had learned and most of all to give them hope. Calvin and I created, founded and managed the Periodic Paralysis Network. We started as a simple website with a simple discussion group and have grown into a corporation with an online community of nearly 300 individuals who are affected by Periodic Paralysis from all over the world. We were finally able to incorporate and are now the Periodic Paralysis Network, Inc. (PPNI)

The focus of our corporation 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 a patient-safety-related organization and advocate for our members all over the world. We provide hope through education of all issues related to Periodic Paralysis, open and free discussion of thoughts and ideas, encouragement, support, sympathy, empathy, validation and advocacy. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members ask questions and share ideas and support. We are usually on in real time, answering questions and providing support as needed for our members.
 
We provide hope to individuals with various forms of Periodic Paralysis through support, education and advocacy. We have a website, a blog and a forum with three distinct discussion groups, and a book, “living with Periodic Paralysis” and other educational activities.
           
1. Please visit our “Periodic Paralysis Network, Inc Website” at:

2. Please visit our "Living With Periodic Paralysis Blog." Information is shared in articles about all aspects of Periodic Paralysis. It has a translator so those from all over the world may read and understand each article.

3. We have a support group the "Periodic Paralysis Network Support, Education and Advocacy Group" at:

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 and safe medical diagnosis and treatment. We continue to do research and provide the latest information to our members.

Members on this board can engage in an open discussion of any topic of interest pertaining to various aspects of Periodic Paralysis. This group is closed to public view for privacy sake. We hope you will participate in the discussions and like us, continue to grow from the experience.

4. We have a discussion group called "Periodic Paralysis Network Genealogy Discussion Group" at:

It was designed for discussion and research into the genealogy of those families with Periodic Paralysis. It is my belief that through this research many of us with an as yet unnamed genetic mutation may be able to find a connection, which may lead us to the ancestor and family line from which the Periodic Paralysis originates. By doing so, we will be able to find and help others who may also carry the mutation and we can learn more about it and how it is passed. With this information, we can create another way to diagnose this condition in certain families.

5. We have written a book called "living with Periodic Paralysis: The Mystery Unraveled". In it, we share my story of near death due to misdiagnoses and improper treatment of this mysterious disease and hope through natural management techniques. We bring awareness of Periodic Paralysis to others who may have it and to doctors for more timely recognition, diagnosing and correct treatment. Our book highlights problems within the medical system today and shares insight into the social and psychological aspects of living with a rare, chronic and progressive disease. It is available to purchase on our website at:

6. We have a discussion group the "Periodic Paralysis Network" to discuss specifically the issues and aspects of Periodic Paralysis from the book at:

7. We have web cam group sessions periodically for support, education, advocacy and discussion.

8. We have the “Periodic Paralysis Network, Inc Facebook Page”:
9. We also have the Periodic Paralysis Network, Inc Author's Facebook Page:
10. Please visit our Periodic Paralysis Network Members World Map:

Our Mission Statement:

The Periodic Paralysis Network exists to assist individuals who have Periodic Paralysis with support, education and advocacy and by providing them with a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting their caregivers and family members.

In the next few months you may notice some changes in design on our website, blog, and groups. Calvin is creating a new logo. Our second book, a user-friendly workbook, is nearly finished and we hope to publish it before the end of the year. We are also working on some fund-raiser ideas. We hope to raise money to cover the costs of putting our books in the hands of doctors, ER’s, EMT's, nurses, libraries, medical schools, nursing schools and more.
  

Thank you all for your support!!


Until later...

Sunday, September 28, 2014

GeneticTesting Should Be For Any Mutation Close To The Relevant Gene


                                         http://all-free-download.com/free-vector/vector-clip-art/double_helix_clip_art_15999.html
Hello All,

Today one of our extremely conscientious members, who is always researching about all aspects of Periodic Paralysis and sharing the articles she finds with us, posted an article about DNA and genetic testing. The article, which was thirty-five pages long, was filled with a great deal of technical information. I know a lot great deal about DNA and genetic testing from my own study, but it is always very difficult for me to understand when I do read that kind of article. This article was one of those, but as I was reading along, something jumped off the page to me. The following is my response to the article:

Thank you for sharing this with us. As usual when I read about DNA genetic testing I get confused and lost.  Although I feel I understand quite a bit about it, the articles always seem to be difficult to understand. However, in this article, one thing popped out to me; the following statement:

"For the great majority of diseases there is extensive allelic heterogeneity, and genetic testing requires a search for any mutation anywhere within or near the relevant gene. The biggest current problem in laboratory genetic diagnosis is the lack of any quick, cheap and reliable method for doing this."

This is exactly what I have been trying to say for quite awhile about our testing for Periodic Paralysis....."GENETIC TESTING REQUIRES A SEARCH FOR ANY MUTATION ANYWHERE WITHIN OR NEAR THE RELEVANT GENE"!!!!!!!!!!

That is what has been missing for most of us whether our genetic testing was done in Germany, or from a doctor's orders somewhere else in the world. The testing was and is too narrow, specific and biased; only looking for specific alleles. The mutations “anywhere within or near the relevant gene” are either ignored or overlooked or not even looked for to begin with. That is why so many people got/get a letter saying they do not have a "known" genetic mutation for Periodic Paralysis. This is definite “bias” in the testing. One is left to believe there is no reason for their symptoms and to wonder about their own sanity. An individual’s doctors, not understanding the above information, believe that the person does not have Periodic Paralysis.

But in reality, I was lucky enough to have a chance to see all of my mutations. Some of my mutations were on different, but recognized exons known to cause PP but were not looked at in the German study. They were not even looked for and some were seen but because they were not the exact allele but right next to it, they were ignored and dismissed. No mention of them was included in the testing result letter. A better way to handle it would have been, first to look at ALL of the known mutations/alleles and then in the letter sent with the results, it should have been stated that similar to my sample letter:

"The results to your DNA testing for Periodic Paralysis are as follows. You have the symptoms of Hyperkalemic Periodic Paralysis. We searched for ALL of the KNOWN mutations for ALL forms of Periodic Paralysis. You do not have the exact and known mutations, but you do have mutations on Exon 7 near the ones that cause Hyperkalemic Periodic Paralysis. Therefore it is likely that you (and possibly your family) have a new or original or unique mutation for Hyperkalemic Periodic Paralysis. This will be documented for your family and for others that may have the same mutation. We need to notify your doctors so that you will be treated from this point on as probably having a form Hyperkalemic Periodic Paralysis. You also need to notify your family members and share this letter with them."

Because this has not happened and I do not expect it to see it happening anytime in the near future and because genetic testing is no longer being done in Germany, and all other testing besides whole genome testing is extremely narrow, diagnosing for Periodic Paralysis must be done by doctors based on the symptoms and characteristics of the individual. This should be done once testing for any other condition in which periods of paralysis or muscle weakness have been ruled out.

The article posted:
Until later…..

Wednesday, September 24, 2014

"Why Do You Need A Diagnosis?"


                                                PPN Publishing
Hello All,

After reading a post from one of the members of our PPN Support, Education and Advocacy  Group, I felt it was time to get back on my soapbox and do a little editorializing again. It seems that doctors in general have learned little about Periodic Paralysis and even less about how to deal with chronically ill patients. They lack what is called "a good bedside manner." I wanted to take some time to put a doctor in his place and perhaps teach him a thing or two also.

Because we are an advocacy group, as well as educational and supportive, I find I must advocate for our members safety, and well being. Therefore, I wrote the following:
                                       
                                           
                                                "Why Do You Need A Diagnosis?"

One of our members was at another frustrating appointment with a “specialist” attempting to get a diagnosis and proper treatment for her teenage daughter who has been suffering greatly during severe and painful episodes of paralysis several times a day and at night. The “specialist” in the process of being rude and arrogant, dared to ask the following question,  "Why do you need a diagnosis?” and then made the statement “There is no treatment," not really expecting an answer or reply.  Distressed and dismayed at yet another doctor’s demeaning, dismissive and egotistical attitude and no diagnosis for her ill and suffering daughter, our member related the story to us on our PPN Support and Education Group.

In answer to the doctor’s rhetorical question and ill-informed and unfortunate comment, Calvin responded with the following:
"Why do you need a diagnosis?" Answer...”To stop the insanity and abuse they create by mistreating the condition. This phrase should be included as one of the triggers we use to find another doctor.”

He is absolutely correct. The problem is individuals with Periodic Paralysis need a diagnosis. We need it for safety reasons in the doctors’ office, the dentist office, an ambulance ride, the ER, the hospital, for surgeries and in any emergency. Most of us cannot take any drugs or medications due to idiosyncratic, paradoxical and iatrogenic effects nor can we have IV’s because sodium and glucose can shift our potassium even lower and causes other life-threatening symptoms nor can we tolerate anesthesia due to possible malignant hyperthermia and/or more life-threatening arrhythmia, paralysis, possible cessation of breathing and death. We need a diagnosis so we can be safe and free from harm in any and all situations.

The medical professionals in our lives need to know that we have Periodic Paralysis and how to treat us or not treat us, as the case may be. They need to know that when we are in paralysis and struggling with arrhythmia, fluctuating blood pressure and heart rate, chocking, breathing issues and pain, that although we cannot open our eyes or speak, we can hear them. They need to know that we are not faking. We are not making it up. Why would we??? Does anyone really think we want to be totally helpless and struggling for our life????

We also need a diagnosis to stop the constant, expensive and insane cycle of testing and retesting for every condition under the sun for an average of twenty years out of our life. (Some of our members did not get a diagnosis until they were in their eighth decade. I myself was diagnosed at the age of 62.) Because genetic testing is costly, narrow, biased and can only diagnose about half of all patients, diagnosing must be done clinically, based on symptoms, once “everything else is ruled out.” REALLY?? How many medical conditions exist in which an individual intermittently has episodes of paralysis??

During the cycle of insanity for a diagnosis, drugs of every type are prescribed which are unnecessary and harmful causing more damage and possible death. New symptoms may develop and then more testing is done and new drugs prescribed. The insanity continues. Then comes the diagnosis of “conversion disorder” or “somatic symptoms”.  Psychotropic drugs are prescribed at this point. More damage is done and possible death may occur.

Without a diagnosis and proper treatment, the individual naturally becomes more ill because organs in the body are being damaged from the potassium shifting, exercise intolerance and gradual permanent muscle weakness sets in, heart problems get more severe, breathing muscles become affected, osteoporosis, kidney stones develop. Metabolic acidosis can kill us. Adaptive equipment like power wheelchairs and oxygen may be necessary. Without a diagnosis the patients will be unable to receive these much needed aides. Without a diagnosis, disability or social security is impossible to receive.

The child, teenager and young adult with Periodic Paralysis will need a diagnosis for appropriate treatment. He or she will need accommodations in school. Teachers and school nurses need to know how to deal with the symptoms and paralysis and understand what is happening and why. There may be a great deal of school missed. Sports and other activities need to be avoided. A special diet must be followed. Wheelchairs or other adaptive equipment may be needed. Without a diagnosis none of this will happen.

For the adult trying to support a family by holding down a job or a career and living with Periodic Paralysis without a diagnosis and proper treatment may lose their job. The years and years of medical testing, misdiagnosis, wrong medications, inappropriate treatment and more can result in financial ruin. This can lead to homes being lost, divorce may ensue, families will fall apart, friends back away, depression sets in and possible suicide may occur. A clear diagnosis and treatment may help others like employers, family members and friends to understand and be willing to help. Disability may be possible.

One of the most important results of a diagnosis for the individual with Periodic Paralysis and his or her family is validation. Validation that the illness does truly exist and that he or she is finally believed. They are vindicated. Vindicated of making it up, faking it or being a hypochondriac. They do not have “conversion disorder.” They have been telling the truth.

And so doctor, “Why do we need a diagnosis?” We need a diagnosis because we want a chance at the quality of life you are experiencing. We need a diagnosis because we want to be treated with dignity and respect. We need a diagnosis because we want to be free of or ease our paralysis, arrhythmia, heart issues, breathing issues and more with the possibility of proper treatment or medication. We need a diagnosis because we would like to use our family's hard earned money to take care of our needs rather than paying for unnecessary testing and harmful drugs. We need a diagnosis so we can obtain adaptive equipment to make our lives and that of or loved ones easier.  We need a diagnosis so we can be safe in emergency situations. We need a diagnosis because we want to live!!!

In conclusion, your rhetorical question and following comment indicate you lack any understanding of the ill patients who come to you for help. You obviously lack understanding, caring, compassion, empathy and sympathy. Your knowledge of Periodic Paralysis is obviously limited and based on archaic information because there is a great deal that can be done to treat our symptoms, once we have a diagnosis. You are obviously not living up to the Hippocratic Oath that I assume you pledged early in your career. You are not doing the job for which you we hired. And you sir are now fired!!!




Until later...

Tuesday, September 23, 2014

Someone who understands (Guest Writer Maureen)


Hello All,
                                                                                                (www.livelifehappy.com)

Many of our members are severely beaten down by the symptoms involved in Periodic Paralysis. The doctors do not understand nor do they seem to care, family members are not supportive and friends just do not get it. Many are depressed and find it difficult to cope with the daily things in their lives. Most people do not understand what we face on a daily basis, except those of us going through it. We have each other and we support each other. Due to this I post inspirational quotes everyday on our PPN Support and Education Group to show my support and how much I care and how thankful I am to have each them on my life. I post quotes about hope, caring, support, understanding and friendship.

Yesterday I posted, “Sometimes in life we just need someone who will be there for us. Someone who will listen. Someone who will understand us.” In response to this one of our members, Maureen, wrote the following:

I LOVE what this says and expresses about one of our fundamental needs. And it sure would be 'icing on the cake' 'dream wish' if a 'someone' would be physician who would say something like, "I don't know what's going on, but I'll be here for you..." (And then they describe what 'being there for you' means to them, so we'd know what they are thinking and what 'criteria' they have in mind and how we are to implement this with a gatekeeper/scheduler without trying to seem like a prima donna/drama queen), then go on to say, "...and hopefully with time we'll get closer to some answers to help manage and better yet, perhaps arrive at an accurate diagnosis. I realize that I can't know everything and it wouldn't be realistic for you to expect that, so if you won't be disappointed in me for not being able to give you an answer, I can tell you that I'll do my best to try to listen to your concerns because I WANT you to feel that you can be open with me. I want you to feel comfortable to tell me what you have to say and what you think and want me to consider because you will have the most at stake motivating you to look for answers that I can't be on top of since so much information multiplies and inundates physicians that it isn't possible to be on top of everything. I may not understand WHAT is going on, but I will do my best to BE understanding of what you are going through..."
 
Unrealistic desire, but that could go SO far

Thank you Maureen. We all wish we had a doctor who would treat us like that; a doctor who is honest and willing to help; a doctor who cares about us and is willing to learn about Periodic Paralysis; a doctor willing to admit he is fallible; a doctor who is willing to admit she is may not know everything; a doctor who understands how sick we are and what we have been through; a doctor who listens; a doctor who sees us a human being first and as a patient second; a doctor who lives by the Hippocratic oath he or she pledged; a doctor who gives us HOPE.

How wonderful that would be…



Until later…

Monday, September 22, 2014

Pain and Periodic Paralysis


Hello All,

I have not written any blogs in awhile because I have been devoting my time to writing our new book. Today I decided to write and add a blog about Pain. Hopefully it may be useful to some of you.


Unfortunately, many doctors have the misconception, based on outdated and archaic information and data, that pain is a not a symptom and does not exist in patients who have Periodic Paralysis. This is a serious issue because these doctors refuse to recognize Periodic Paralysis and refuse to diagnose individuals who desperately need to be diagnosed because they experience pain.

Last year we created and carried out a series of four surveys attempting to gather as much information as possible in order to create a set of criteria that doctors could use to aid in diagnosing patients. Ninety-five percent of the participants indicated that they experience pain regardless of their diagnoses; Andersen-Tawil Syndrome, Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis, Normokalemic Periodic Paralysis or Paramyotonia Congenita. It was the same whether they were diagnosed genetically, clinically or still seeking a diagnosis.

It was discovered that the pain can be experienced before, at the beginning, during or after episodes or it can be intermittent or chronic (all of the time). The pain was described in many ways such as achy, sharp, constant, tenderness, sudden, cramping, rigidity, contractions, tightening, stiffness, charley horses, growing pains or spasms. It was reported as only involving one limb or body part, partial body, the trunk, several body parts or the entire body.

The pain results from several natural ways depending on the type of Periodic Paralysis or genetic mutation. In some cases it is from the swelling of the muscles when they fill up with fluid as the potassium shifts. Some of the pain is from the rigidity and contracting of the muscles. A third cause can be the shifting of sugar with the potassium. A fourth cause may be from low magnesium. Cold can create rigidity and pain for some. Metabolic acidosis, which can often develop in Periodic Paralysis, causes pain in the bones and chest pain.

Other conditions or diseases can co-exist causing permanent or intermittent pain such as Ehler-Danlos Syndrome (EDS), arthritis or fibromyalgia. These may be aggravated when an individual with Periodic Paralysis is in an episode or paralysis. Intermittent paralytic episodes can damage organs in the body, including the muscles. For some individuals the pain becomes permanent and may be misdiagnosed as fibromyalgia, or other medical issues like rheumatoid arthritis. Pain may also be caused from other unnatural means. The off-label medications typically prescribed for Periodic Paralysis or other drugs such as statins may create pain.

The best method to avoid the pain during the episodes is to avoid the episodes by avoiding the triggers and maintaining a balance in diet, rest, hydration and other natural methods.

Some people with Periodic Paralysis may be able to take medications to ease the pain but many  people cannot handle medications. It is advised that the pain be treated with natural means such as eating certain foods, herbal teas, heating pads, warm baths, ice packs, relaxation techniques and massages.  Many more ideas can be found on the Internet.

http://emedicine.medscape.com/article/242975-clinical
http://beyondmeds.com/2012/10/03/natural-pain-relief/



Until later...

Friday, September 5, 2014

275 Members!!

Congratulations to us all at the PPN Support, Education and Advocacy Group!!! We now have over 275 members!!!!!!!! Thanks for your support.

Our PPN Network Forum!

Please check out our PPN Members World Map: http://www.multiplottr.com/?map_id=55083


PPN Website: www.periodicparalysisnetwork.com

PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

PPN Book: "Living With Periodic Paralysis: The Mystery Unraveled"
(Found on our website)
http://www.periodicparalysisnetwork.com/books.htm

PPN Blog: http://livingwithperiodicparalysis.blogspot.com/

PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/

PPN Genealogy-Genetic Discussion Group:
https://www.facebook.com/groups/580168915344191/

PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork

PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor

Email: sqknittle@gmail.com


Thank you all for your support........