Serene Forest

Thursday, December 10, 2020

The Digestive Tract and Periodic Paralysis

 



The Digestive Tract and Periodic Paralysis


We were asked in our Periodic Paralysis Network Support Group today if anyone with Periodic Paralysis (PP) has ongoing digestive problems. My answer is YES; I do have severe gastric/digestive issues, as do many of us in this group with Periodic Paralysis. It seems the PP can affect our digestive tract. We can have issues from acid reflux, constipation and gastritis to paralytic ileus* (malfunction of the muscles in the intestine) and the acidity issue can also be related to PP because we tend to have chronic metabolic acidosis of which acid reflux can be a symptom.

I have ended up in the ER/hospital twice in the past three years with digestive issues and am going through the cycle again right now. Over one year's time, my daughter was in the hospital 9 times with the longest stay 40 days and she lost 90 pounds during that year, dealing with paralytic ileus and Cyclic Vomiting Syndrome (CVS).

We control our acid reflux with a pH balanced diet which keeps our acidity levels in balance. Diet and managing our potassium/electrolyte levels is especially important for those with PP for many reasons, to include managing our digestive tract, from beginning to end.

*“Paralytic ileus is the occurrence of intestinal blockage in the absence of an actual physical obstruction. This type of blockage is caused by a malfunction in the nerves and muscles in the intestine that impairs digestive movement. Causes of paralytic ileus include electrolyte imbalances… "

https://www.healthgrades.com/right-care/digestive-health/paralytic-ileus#:~:text=Paralytic%20ileus%20is%20the%20occurrence,intestine%20that%20impairs%20digestive%20movement.

https://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html



Until later...

Thursday, November 12, 2020

Happy 7th Anniversary to Our Blog!!

 



Happy 7th Anniversary to Living With Periodic Paralysis: The Blog!!! 


It has been 7 years since we posted our first Blog Article!! Since that day we have had over 156,497 total page views!! We now have nearly 180 articles!!


Monday, August 31, 2020

'What Is Periodic Paralysis? A Disease Like No Other' ~ Fourth Anniversary!


 Hello All,

This week we celebrate the fourth anniversary of publishing our fourth book, "What Is Periodic Paralysis?: A Disease Like No Other."
I am including some information about it; the Table of Contents and the Preface.
Table of Contents
About A.S.E.A. vi
Preface viii
Acknowledgments ix
Introduction 13
What Is Periodic Paralysis? 17
What Are The Symptoms Of Periodic Paralysis? 29
What Are The Triggers Of Periodic Paralysis? 43
Relieving The Symptoms Of Periodic Paralysis 53
Handling The Episodes Of Periodic Paralysis 65
Diagnosing Periodic Paralysis 77
Complications Of Periodic Paralysis 91
Prognosis For Periodic Paralysis 121
Conclusion 129
Resources 140
About the Authors 141
Preface
The Preface of a book gives the reader information about how the book came to be, where the idea originated. In the case of this book, my own family and the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ inspired, What Is Periodic Paralysis? A Disease Like No Other.
The members, now over 900 (update) worldwide, share daily their heart-breaking and frustrating experiences. They relate frightening symptoms, years of painful and costly testing, a lack of being believed and abuse by doctors, denial of diagnoses and denial of proper treatment. These courageous and very ill people are under-recognized; under-diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom they must deal and depend upon for their care. But to add insult to injury, this same treatment is also received from family members and friends who also tend to disbelieve the existence of the rare medical condition, Periodic Paralysis.
This booklet has been designed and written to share with family members, friends, teachers, coworkers and others who should know about and may want to know, the truth about this cruel disease.
For these reasons this booklet answering the question: “What is Periodic Paralysis?” has been created and written, by the PPN. The information used to describe and explain this disorder is referenced and can be found at the Periodic Paralysis Network, Inc. Website, Blog Articles, Discussion Groups and Books, to include: Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide And Workbook: Be All You Can Be Naturally, and A Bill Of Rights For Periodic Paralysis Patients.
It can be purchased from our PPNI Website Bookstore:

Wednesday, August 19, 2020

Those of us with Periodic Paralysis are each totally individual and unique!!





Those of us with Periodic Paralysis are each totally individual and unique!!


No two of us is exactly alike. We each experience our PP differently. Our episodes and symptoms are individual and unique to each of us.

Our episodes are based on three things: the form or forms of PP we have, the trigger or triggers causing them and any other co-existing conditions we may have.

So our episodes will happen as often as we introduce our triggers to ourselves.

They will last as long as that trigger somehow determines (some triggers may cause short episodes, some longer) and be as severe as that trigger determines, for instance, they may be as simple as a twitch of the eyelid for a few hours, a numbness or tingling of an arm or a full, total-body (from head (including inability to see) to toes), extreme episode with heart, blood pressure, breathing and choking lasting many hours. (I have had these lasting 7 hours...most were about 4 hours several times a day.)

If we have coexisting conditions symptoms and episodes can be more severe, depending on how the trigger also affects the other condition and how the coexisting condition affects the PP.

It is usually quite easy to detect the triggers/causes. If you keep a journal or keep track by writing down everything you do, eat, drink and more, and then keep track of when your symptoms occur and what they are, you will see a pattern emerge and be able to figure it out. You can eliminate or modify the triggers to eliminate the episode/symptoms.

I went from 4 or 5 severe episodes a day to 1 or 2 a year, much less severe and lasting a much shorter time (except for at night) by charting everything, eliminating the trigger/s, changing my diet and by staying in total balance.

None of us will have the same triggers, the same types of episodes, the same number of episodes and the same length and degree of episodes. Each of us is very unique...this even applies to those in the same family. My family members with PP are totally different in how our episodes present themselves and our triggers are not the same. We each have different coexisting conditions as well.

The following Blog Article has a group of articles and links to help each person understand how to create their own Individual Management Plan (IMP).



Until later...

Monday, August 17, 2020

Our New and Updated Periodic Paralysis Network Inc Website

 

We are previewing our new and updated Periodic Paralysis Network Inc Website today!! Please go in and have a look. We are now offering our books in Ebook format in our new book store, as requested. Our Google Blogger can now be accessed through the website as well. We have a new Announcement Page to keep everyone updated. More new features are in the planning stage. Check out the Menu Bar for information about the PPNI Company and Website.

Wednesday, August 12, 2020

IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis



For all of the parents who are sending their children with PP back to school, this may be helpful. It is written for those in the USA and to help to outline and write either an IEP (Individual Education Plan) or a 504 Plan (both legal and binding documents in the USA). I am a retired Special Education Teacher. 

(This may or may not be applicable at this time in dealing with Covid-19.)

I wrote this for a parent awhile back...I have meant to post it as a Blog Article, but have never quite finished it before...I hope this can be helpful.

 

IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis at School

 

Each plan is individualized to your child's needs, accommodations and restrictions. The biggest difference in them is how it is funded and who will be in charge of the plan.

The best place to start is to have a copy of the information about your child’s form of Periodic Paralysis and how it affects him or her. No one will know what it is or be able to understand it without some background information.

Next, you will need to come up with a list of the needs, accommodations and restrictions, etc that are necessary for your child. You can do this with your doctor or come up with them and then ask the doctor to put them on his/her letterhead for you. The school will have a better time believing and following through this way. This should include the issues related to his heart, breathing, blood pressure, cognitive issues, muscle weakness, and/or paralysis as the potassium shifts.

How to recognize an episode? What to do in an emergency? Teachers and nurse should be trained to recognize signs of an episode and know what to do.

Triggers and how/what to avoid? If any type of exercise causes an episode, then he or she should not have PP, or can he do some simple things like walking, but no running or swimming?

Food restrictions, or does he or she need to eat and or drink something every few hours?

Does he or she need more time to get from class to class? Does he or she need help to get from class to class? Should he or she have a friend with him at all times in case he or she goes into an episode? Elevator rather than walking up and down stairs? Can walk from class to class but not out to the football field?

Due to the time length of episodes or abortive attacks, does he or she require more time to complete assignments? Or does he or she need home schooling/instruction from time to time? Do the district days of absences allowed need to be changed? Days added for him?

Does he or she need adaptations such as using a computer rather than writing with a pencil or pen or doing his or her work orally or verbally?

Can he or she carry his or her books from class to class? Too many books at a time? Can he visit his or her locker more often or leave books and supplies in classroom with the teacher?

Does he or she need a special chair or wheelchair at times in which he or she can recline due to weak trunk muscles?

Does speech/talking in the classroom need to be limited to short periods of time due to weak mouth and throat muscles?

Eyes/eyelids may become too weak to read, etc. Can lectures be recorded or can a friend share notes?

Another important issue to consider is whether the child's symptoms may require him or her to remain at home permanently using home schooling, or attending school remotely or possibly a combination of the two.

 

**Purchasing a copy of our book, What is Periodic Paralysis? A Disease Like No Other and completing your child’s individual, important information related to Periodic Paralysis at the end of each chapter is an excellent way to share the data and instruction for the teachers, nurses and administers. This is why this book was created, for sharing and teaching others about Periodic Paralysis.

The following are example pages from the book:


Friday, July 31, 2020

Providing Awareness of Periodic Paralysis through A.S.E.A.




Awareness is a sense of understanding, knowing, recognition or mindfulness of something. At this time, among most people in the world, doctors, medical professionals and government entities, the term Periodic Paralysis has no meaning. It is not recognized, known about or understood by those in authority who should be aware of it. This needs to be changed worldwide and we are here to do it.
Since realizing I had a form of Periodic Paralysis (PP), after over fifty years of searching for the cause of my unusual, debilitating and progressive symptoms, I knew there was very little information available about this rare medical condition. It was obvious that few doctors knew about or understood the condition either. Through my research, I discovered it takes nearly a decade of graduate school to become a doctor. During those years of training, unfortunately, Periodic Paralysis is mentioned in one or two paragraphs and in those paragraphs it is described as so rare that a doctor will never see a patient with it in his or her lifetime or years of practice. This is a serious disservice to those of us who have the condition.  As I researched and learned more, I also discovered most all of the information found on-line was old, out-dated, misleading or wrong. Sadly, this is the information being used by many doctors.
Too many individuals are suffering needlessly and even dying due to this misinformation, under-recognition, under-diagnoses and misdiagnoses. When someone suffering the effects of the cruel condition of Periodic Paralysis mentions the term ‘Periodic Paralysis’ blank stares, and lack of understanding are the norm, especially by medical professionals. Very few people on earth have heard of it or know about it. This has to be corrected.
Periodic Paralysis is a serious mineral metabolic disorder, which everyone should be aware of and understand. However, at this time, among most people in the world, doctors, medical professionals and government entities, the term Periodic Paralysis has no meaning. It is not recognized, known about or understood by those in authority who should be aware of it. Change is necessary worldwide.
When the terms multiple sclerosis, muscular dystrophy, ALS (Lou Gehrig’s disease), cancer or leukemia are heard someone automatically visualizes an individual whose health is compromised, probably in some pain, maybe in a wheelchair and unable to go about normal daily duties, unaided. The futures of these individuals are uncertain. Most people are moved to sadness and concern for those individuals. Family, friends, churches, and even entire neighborhoods and communities readily offer help and support. This, however, is not the case for people with the varying forms of PP, however, it should be.
It was our hope that someday when the words “Periodic Paralysis” are heard everyone would understand and instantly visualize the seriousness of this condition…an individual becomes severely weak from muscle weakness or tightness or are suddenly totally paralyzed, unable to walk or talk and in fear because his or her heart is racing and beating irregularly, blood pressure is dangerously high or low, breathing is difficult and may stop, oxygen may be very low, choking may occur, and he or she may die during the episode from a heart arrhythmia and/or respiratory or cardiac arrest. He or she may look asleep or unconscious, they can hear everything going on, but cannot say a word. The individual is vulnerable and at the mercy of others and ‘totally alone in the dark.’ Over time, gradual, permanent muscle weakness sets in and the person becomes disabled. The future of these individuals is as uncertain as in the other severe medical conditions.
As it turns out, after nearly a decade of providing, support, education and advocacy for people with all types of Periodic Paralysis around the world, we know that PP is not all that “rare,” but rather, as mentioned previously, it is under-recognized, under-diagnosed and misdiagnosed. It takes an average of twenty years for an individual to receive a diagnosis. (My own diagnosis took over 50 years!) Many die before they ever receive a diagnosis or even after due to inappropriate care. This is unconscionable and unnecessary. This would not be the case if all medical professionals understood Periodic Paralysis and knew how to recognize this condition.
More education and training is needed for students in medical school and for all other medical professionals including nurses, EMTs, paramedics, social workers, teachers, lab technicians and more. Periodic Paralysis needs to be as commonly understood as other medical conditions such as multiple sclerosis, muscular dystrophy, fibromyalgia, heart disease, diabetes, and Lou Gehrig’s disease.
We created the Periodic Paralysis Network hoping to provide the correct and vital information for people with PP, their family members and caregivers and all medical professionals. We hoped as well to bring awareness to everyone in the world. We are here and doing this through our A.S.E.A Program. We are bringing Awareness to everyone in the world through Support, Education and Advocacy. 

Our features and services providing Awareness of Periodic Paralysis include:


Our Periodic Paralysis Network Inc Website:

After receiving my diagnosis for Andersen-Tawil Syndrome on February 7, 2011, my therapist, Rosie, who was instrumental in helping me to get diagnosed and supported me through a few years of uncertainty, hospitalizations and hell, suggested that we write a book about Periodic Paralysis and all that we experienced before getting the diagnosis. She thought that the world should know about PP and what we went through; perhaps we could help others in the same situation. We decided after much discussion about our education, skills and teaching experience, to create the Periodic Paralysis Network first to do just that and then later set out to write our first book. We have now grown into a large forum with many features and services, each created as the need arose.

Our Periodic Paralysis Network Inc 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


What is Periodic Paralysis?: A Disease Like No Other


We created and published our books, taking years to research and write, with the hope that students in medical school, all medical professionals, including nurses, EMTs, paramedics, social workers, teachers, lab technicians, other PP organizations, and more would read the information to better understand, diagnose in a timely manner, and treat patients with all forms of Periodic Paralysis more appropriately and with compassion.
Of course the information in the books is mainly for anyone who has this condition to be able to fully understand everything about Periodic Paralysis from what it is, to how to get diagnosed, to how to manage the symptoms. Every issue related to Periodic Paralysis is covered in the books.
One of them, What Is Periodic Paralysis?: A Condition Like No Other, was written especially to bring awareness of the condition to others.  It was designed for those with Periodic Paralysis to be given to doctors, teachers, neighbors, babysitters, family members and more to inform them about the condition.
The sale of our books (and donations) is how we fund our organization. Every penny from the purchases goes right into PPNI to cover our fees, licenses and expenses.

Our Periodic Paralysis Network Inc Blog
https://livingwithperiodicparalysis.blogspot.com/

In the beginning the members asked that our Periodic Paralysis Network Support Group be private due to the medical nature of the issues that would be discussed. They also asked that no professionals of any type; doctors, nurses, social workers, etc be admitted to the group as observers. They desired the group to be a ‘safe’ place where they could discuss their feelings, thoughts, ideas and more without the judgment of professionals. Due to this, we wanted a place where Family members, friends, doctors, nurses, teachers, and more could go to learn more about Periodic Paralysis. We created the public ‘Living With Periodic Paralysis: The Blog’ in order to share our information and discoveries with everyone around the world. It has a translator so anyone can read the content and learn.

Our Periodic Paralysis Network Inc Facebook Page
The ‘Periodic Paralysis Network Inc Facebook Page’ was also designed to bring about more awareness of Periodic Paralysis. Anyone can join. Many articles and posts are shared about Periodic Paralysis as well as other issues related to it such as chronic illness, invisible diseases and co-existing conditions. Inspirational posts are included as well.

Our Periodic Paralysis Awareness Day Page
Periodic Awareness Day Feb 7
Several years ago, one of our members inquired about an Awareness Day for Periodic Paralysis. One did not exist, so we set out to create one. We decided to use the date of February 7, the day I finally received my diagnosis after over 50 years. We created the ‘Periodic Paralysis Awareness Day Page.’ Each year for a month before that date, we share posts designed to bring awareness of Period Paralysis on that page. Anyone can join it and the posts are meant for sharing by our members to bring awareness of it to their family and friends.