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 are 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 the 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).

https://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html

Until later...

Changing Lives Naturally

Hello All,

It has been awhile since I have posted a new blog. Actually, it is because I have been doing so well and have been able to do so much more than I have in several years, that I have been catching up on lost time doing things I never thought I would do again.

I had been on a medication (mirapex) which I thought I could never get off of. I tried many times and my symptoms got worse each time I tried over the years and I thought it was really helping my restless leg syndrome. For my 2014 New Year's resolution, I decided I really needed to try to get off of it again. I really needed to know if it was causing the symptoms that continued to keep me weak, etc and unable to function. I tapered off of it for months and just lived with the awful effects of withdrawal. Once I stopped it completely, I still had some issues, but over time and with working on my diet and other little changes, I was suddenly better and had no more restless leg also!! The fog lifted, I no longer had the awful weakness and I have had no paralysis for three months!!!

I am ready to get back to work with my writing, but I still need to take it easy because I continue have exercise intolerance, blood pressure issues and heart arrhythmia issues. After all, I still do have Periodic Paralysis, but it is definitely under better control, all by natural means.

Today's blog is something I wrote awhile back on our Periodic Paralysis Support, Education and Advocacy Group. It is time again to post it on our board and on our blog. We make no apologies for our philosophy, which has changed and saved many lives. It is posted on our logo: "Changing Lives naturally":

Hello All,

Since we have had so many new members join in the past few weeks, we wanted to post this information again. Our group is a little different and unique compared to the other groups. Not everyone is aware of this when they join. We are a support group and an educational group and also an "advocacy" group. We are concerned with your safety and how you are being treated, by the medical professionals in your life.

Please read the following.....for your information.

"Since we have so many new members I wanted to review with everyone about what the Periodic Paralysis Network is all about. We have a forum with several different options for information and support. We have four discussion groups (support, genealogy/genetic, book discussion and medical professional) which are all private for obvious reasons. We have two pages....mostly for just reaching others who need to find our help and education. We have our original website with a great deal of information. And we have a blog which is open in order to reach everyone around the world (has a translator), including medical professionals. We also have written a book, "Living With Periodic Paralysis: The Mystery Unraveled." It has 444 pages of information, is fully indexed and and we use over 250 references. It took us three years to write.

This group is our support, education and advocacy group. We welcome everyone and anyone who has any form of Periodic Paralysis or who suspects they have it (also family members). We provide support to those who are diagnosed or attempting to get a diagnosis.

We are an educational group because we provide information based on research. We attempt to answer any and all questions with information we find/found through research. Many of the answers are also in our book and on our website and our blog. Some things are also found in the "Files" section of this page.

We are an advocacy group. We work toward the improvement of quality and safety in healthcare for everyone with Periodic Paralysis. We are a member of the Patient Advocate Directory!!! They are a world-wide network of individuals and independent organizations working toward the improvement of quality and safety in healthcare.

We are here to help you "be the best you can be". Many of us cannot tolerate the pharmaceuticals/drugs/medications which are typically prescribed and through research and experimentation, we have found natural ways to manage and ease the symptoms of Periodic Paralysis. We share them with you.

As advocates for you, we also pass along the information about the pharmaceuticals/drugs/medications which are typically prescribed for every form of Periodic Paralysis. We caution anyone on them or who is considering using them to be aware of the side effects and possible problems from them. We also caution everyone who has Periodic Paralysis to be very careful if you are taking any pharmaceuticals/drugs/medications, anesthetics for surgery and IVs.

Periodic Paralysis is a mineral metabolic disorder and must be treated as such.

Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members."

Thanks,
Susan and Calvin

 Until later...

Standard Healthy Eating Is Not Best For Individuals With PP

Hello All,

Yesterday a new member of our PPN Support Group wanted to know if eating grapes could cause a paralytic attack. In answer to her question I posted a few articles about the sugar content in grapes and other fruit. After reading them she stated, “Standard healthy eating is not best for individuals with PP” and she is absolutely correct.

For us with Hypokalemic Periodic Paralysis or Andersen-Tawil Syndrome, the amount of sugar in fruit can cause our potassium to drop, so as good as fruit may be for most people, it is not necessarily good for us. The Hyperkalemic Periodic Paralysis diet is a little different, in that more sugars and carbohydrates are needed.

Standard healthy eating does not work for most of us. We need to evaluate and experiment and keep a journal. To make this easier, we have created a chart which can be copied on our website and in our book with instructions to discover your triggers, including food triggers.

 
Some of the biggest culprits are sugar, salt, gluten, wheat, caffeine, simple carbohydrates, red meats, alcohol and much more and simply eating too much at a time. Because most of us tend to be acidic, we need to follow a pH balanced diet (70/30). Foods should also be organic, not processed, that is free of additives, fillers, food colorings, artificial sweeteners, hormones and antibiotics. Most meat and dairy products have hormones and antibiotics in them and some meat can be infused with a great deal of salt. Fasting can cause symptoms also. So we need to look at five separate things as we prepare our food: the timing of our meals, the amount we eat at each meal, the foods which are our individual triggers, the acidity of our diet and whether is it organic and safe to eat.

Even our water can have hormones, antibiotics and other drugs in it. I drink only distilled water for this reason.

We have adopted several sayings related to how best to manage our diet in order to best control our symptoms. From the book:

“Eat to live rather than live to eat.”

”Eat 70 percent alkaline and thirty percent acidic.”

“Eat from the farm and not the factory.”

”If it's delivered through a window then it's not food.”

The 70/30 rule is the most important of the group. We have it posted on our refrigerator along with the acid and alkaline ratings of particular foods.

Our bodies need a certain amount of sugar, salt, protein, carbohydrates and more so we cannot eliminate these things but we must find the proper balance. “Balance” is the most important word in our plan. If just one thing is out of balance, it can mean the difference between life and death in some cases. Besides the 70/30 balances in our diet, the other elements in our body must be in balance also, especially the elements or minerals (sometimes called electrolytes). This is due to the fact that Periodic Paralysis is a mineral metabolic disorder and when the minerals are out of balance, paralysis will occur. Some of these elements are calcium, magnesium, sodium, potassium, chloride, and bicarbonate.

These may be needed and can be consumed as supplements. The supplements also need to be organic and free of additives, fillers, food colorings, artificial sweeteners and anything not natural.

Many of us with Periodic Paralysis cannot tolerate the medications normally prescribed to minimize the paralytic episodes or we cannot obtain the medications. We must use natural methods to control the symptoms.

The Diet:

http://www.rense.com/1.mpicons/acidalka.htm

Until later…