This blog is designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel metabolic disorder. I have a variant of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetwork.com .
Friday, October 13, 2017
How To Manage Our Periodic Paralysis Symptoms Naturally: Total Balance, Proper Diet and Avoiding Triggers
How To Manage Our Periodic Paralysis Symptoms Naturally:
Total Balance, Proper Diet and Avoiding Triggers
The following is the plan for best managing our symptoms and paralysis in all natural ways. This information comes from research and trial and error. I was not able to handle drugs of any kind and was dying. Calvin saved my life using these methods and ideas and reduced my episodes of severe, full-body paralysis from 4 or 5 a day to one or two every several months which are less severe and shorter in duration. This information and much more is in our books and other Blog Articles and in our Files. Different aspects of this are discussed daily in our support group. The first part of the article is how to stay balanced in all ways and the second part is about the dietary changes that will make a significant difference.
Balance and Periodic Paralysis
I constantly discuss staying ‘totally balanced’ in all ways in order to manage our symptoms…but what does that mean exactly?? The following is my explanation.
Periodic Paralysis is a Mineral Metabolic Disorder, which is also known as an ion channelopathy. This means that the levels of the minerals/electrolytes/ions in the blood can become abnormal or can fluctuate in error depending on several issues. There will be either not enough minerals in the blood or too many minerals in the blood. Many things we call ‘triggers’ can cause this for us including, but not limited to, drugs, IV’s anesthesia, some foods (junk food, processed foods-anything not natural), food fillers and dyes, exercise, exertion, temperature fluctuations, heat, cold, stress, sleep, sodium, sugar, carbohydrates.
For those of us with varying forms of Periodic Paralysis, when a trigger is introduced in our bodies, the minerals shift and it causes many symptoms, most notably, periods of paralysis. These can be either partial or full-body. Therefore it is important for us to stay balanced.
First, this means we must keep the electrolytes/minerals in balance. These include:
potassium (K+) Use potassium meter to monitor levels.
Second, other things that need to be well balanced:
Sugar/glucose: Use glucose meter (blood), follow a diabetic diet and eat smaller amounts more often to prevent sugar highs and lows.
pH/acid/alkaline: Use pH strips (urine and saliva), follow a pH or alkaline balanced diet.
Hydration/dehydration: Drink plenty of water, but not too much. Low or high levels of water/fluid affect mineral levels.
Salt/sodium: Salt can be a trigger, use low sodium foods with care, the salt in those foods is replaced with potassium for flavor so will increase potassium levels.
Body temperature: Use a thermometer. Fever can create symptoms. Heat and cold also causes symptoms.
Vitamins: Any vitamin imbalance can create symptoms.
Exercise/exertion: Too much exertion or exercise sets our symptoms into motion, it is important to know your own limits.
Blood pressure: Monitor with a blood pressure wrist cuff. Blood pressure needs to be kept at normal levels. This can be done with diet and staying balanced.
Oxygen levels: Monitor with finger pulse oximeters, below 95% the cells begin to be starved causing damage. If blood pressure is up or down, oxygen may be needed to avoid damage. Low oxygen levels prevent the cells from working properly and it affects the brain, heart and energy levels.
Heartbeat: Monitor with finger pulse oximeters and blood pressure wrist cuff. If heart rate is too slow the heart has to work harder and the brain and other organs are not getting the oxygen they need and if the heart is beating too fast the organs and other tissue is being deprived of oxygen.
Carbohydrates: Too many carbohydrates in a meal affect HypoKPP, but HyperKPP needs more carbohydrates in the diet.
Sleep: A lack of sleep causes chemical imbalances in the body and affects insulin levels, among other issues.
Stress (good or bad): This causes adrenaline to rise, which lowers potassium levels and also affects insulin levels.
Drugs/medications/over-the-counter: Avoid at all cost. These will cause serious imbalances in many different ways, depending on their composition and our form of Periodic Paralysis and co-existing conditions.
If we can keep our bodies in balance, we can minimize our symptoms and improve our quality of life. It is a constant battle and not easy but the results are well worth it. We equate it to constantly walking a tightrope.
This form helps to monitor the above issues in order to stay in balance.
Diet and Nutrition
Make Healthy Lifestyle Changes (From Workbook)
Lifestyle changes are difficult at first, but the results are well worth the effort. I have regained my life in most ways by avoiding the triggers of my paralytic episodes and by changing how and what I eat.
Many of us with various forms of Periodic Paralysis cannot get medications and/or cannot take them. A few years ago I was basically dying due to this fact. Calvin 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 four to five 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.
We have adopted several sayings when it comes to eating:
“Eat to live rather than live to eat.”
“Eat from the farm and not the factory.”
”Eat 70 percent alkaline and 30 percent acidic.”
The 70/30 eating 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.
Periodic Paralysis is not curable but we believe it is manageable, in part, by the things we consume and the things we avoid. Highly acidic chemicals and food can trigger potassium shifting. The relationship between potassium shifting and metabolic acidosis is quite real and should be taken very seriously in order to avoid life-threatening complications. The goal is consume much more alkaline and much less acid.
Eat a Proper pH Balanced Diet
“Eat to live rather than live to eat”
When Calvin discovered I had metabolic acidosis and was unable to take any medication, he began to search for ways to save my life. He had discovered that the pH balance in my body was unbalanced with too much acidity. He set out to increase the alkaline in my body. He found a website with a chart containing the pH balance of the most common foods. With the chart in hand, he hurried to the store and bought as many of the foods containing alkaline he could find, mostly vegetables. Then he found our juicer and made a vegetable and fruit drink for me every morning, he prepared fresh vegetables for my lunch and made a fresh salad for my dinner. He cut out almost all foods with acidity. It was difficult for me so he decided to eat the same diet with me. Soon I was doing better. I grew stronger, the attacks of paralysis decreased in number and severity and by the time six months had passed, we both lost twenty pounds and our cholesterol levels were decreased and sugar levels were down in the normal ranges.
While attending a visit with one of my diagnosing doctors, we told him about the diet and how it had helped me. He said that we were now, “Eating to live and no longer living to eat”. He was so right!
What we had discovered was the body has a natural pH balance. It is 70% alkaline and 30% acidic. Any deviation from this may cause an imbalance. Any imbalance in the body causes stress and may trigger symptoms or paralysis. If the body becomes too acidic, metabolic acidosis may occur. Too much alkaline in the body can also be a serious problem causing dehydration. With this in mind, each meal eaten should contain 70% alkaline food and 30% acidic food. There are several good websites on the Internet with charts listing foods high in acidity and high in alkaline. These sites also have instructions for how to follow the diet and recipes for preparing healthy dishes. Links to these sites can be found on our website Periodic Paralysis Network.
“Eat from the farm; not the factory”
The best way to follow a pH balanced diet is to remember to, “Eat from the farm; not from the factory”. This is because most junk food and processed foods are packed with substances, which are acidic or naturally more acidic. Meat is also a more acidic food. Another way to remember how to shop in order to keep the body pH balance is to stay out of the center isles in the grocery store. The good and healthy foods are always on the outer lanes of the store.
That being said, it is best to remember the word “balance”. It is easy to be afraid to eat too much alkaline and forget to eat the 30% acidity. With that in mind, and remembering an individual’s triggers, some food with acidity is permitted.
We suggest that when purchasing the food for the pH balanced diet it should be organically grown and processed as much as possible. There are several reasons. The most important is to avoid additives, hormones and pesticides, which can possibly be triggers. If not triggers, they may cause illness and indirectly be triggers for paralytic attacks.
Most cows and cattle (and other animals we eat) are given hormones and antibiotics, unless organically raised. The dairy products and meat from these animals will contain a certain amount of them. If antibiotics or hormones are triggers for an individual, he or she may not be aware that those will be found in the milk, cheese or meat they eat. Without realizing it they may be ingesting them, thus creating episodes of paralysis and not knowing why.
The same thing applies to our drinking water. The hormones, antibiotics and other medications passed from humans and animals into our water supply are remaining even
after the water is purified. Individuals with Periodic Paralysis may not realize they are actually ingesting these medications, hormones and antibiotics in drinking water. For this reason, we suggest using a distiller to process drinking water. It is the only way to have pure drinking water, unless the water is from a good well, which has been tested and found free of all contaminants.
Extracting nutrients from natural food sources is much more affordable and convenient today with the use of a nutrients extractor. NutriBullet is the kitchen tool we use to turn raw vegetables, fruits, nuts and seeds into liquid drinks that help optimize metabolism, overall health and pH balance on the alkaline side.
“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.
That being said, however, salt (sodium) may be a trigger for paralytic episodes for most individuals. Due to that fact many of us avoid it like the plague. If we do not eat any salt then our body will get out of balance and episodes of paralysis or other symptoms may develop. So we must carefully ingest some sodium for that balance.
This also includes natural sugar and some fats and oils. These are also needed in our body, but care must be given to how much we eat of them in our diet and which types. Natural sugars in fruits would be a better choice than white processed table sugar. Olive oil is a better choice than vegetable oil. Monounsaturated fats and polyunsaturated fats are a better choice than saturated fats.
I discovered these things the hard way. After many months of not eating salt, sugar, carbohydrates and fats and oils, and experiencing great improvement with almost no paralytic episodes, I suddenly got very ill and began to have more episodes of severe paralysis. I became extremely weak and overall quite ill. After researching it, I discovered I was probably suffering from too much alkalinity and an imbalance of electrolytes and my body needed some sugar and some fats. I decided that I needed to carefully re-introduce these things back into my diet, one at a time to monitor for problems. I began to feel better, the paralytic episodes decreased and I regained my strength. I am still very careful, but I now enjoy better balanced diet. “Balance” is the key!
The pH Balanced Diet
”Eat 70 percent alkaline and 30 percent acidic.”
We are often asked to describe the pH balanced diet discussed in our book living with Periodic Paralysis: The Mystery Unraveled, also known as the alkaline diet. Before discussing this diet we must first explain that there are different diets typically recommended for Hypokalemic Periodic Paralysis and Hyperkalemic Periodic Paralysis. The diet recommended for Hypokalemic Periodic Paralysis is basically a low sodium, low carbohydrate and high potassium diet. The recommended diet for Hyperkalemic Periodic Paralysis is basically a high carbohydrate, low potassium and low sodium diet. For all types of PP fasting should be avoided and care should be taken to avoid dips or increases in sugar levels. It is important to remember, however, that Periodic Paralysis is a mineral metabolic disorder and our bodies can easily become out of balance. So keeping the above diet guidelines in mind, we must also keep our pH levels in balance.
The most important thing to remember is the 70%-30% part of the diet. This means 70% alkaline and 30% acid. Then you must factor in the organic and natural issues. There are many websites that have charts, recipes and menus for the alkaline diet also known as the pH diet. The 70/30 is the balance between acidity and alkaline that our body must maintain to keep us alive and well. If we are too acidic or too alkaline we become ill as discussed earlier.
The foods with the most alkaline are fresh green vegetables, grasses, sprouts, peas, beans, lentils, spices, herbs and seasonings, and seeds and nuts (mainly almonds). Foods that are more acidic (eat sparingly) are meat, fish, poultry, dairy products, eggs, grains, and legumes.
Balance is the important word when it comes to putting a meal together and for snacking. We also need to remember the sugar, salt (sea) and oil/fat content of the foods we eat. Do not entirely eliminate them just use sparingly. Processed foods have these things and chemicals so eat as fresh and organic as possible.
I cannot eat gluten and try to use dairy products sparingly, so my diet is even more restricted. I eat a great deal of raw vegetables and salads.
A salad will contain greens, tomatoes, avocados (at each meal if possible) cucumbers, carrots, celery, sprouts, mushrooms, peppers, nuts (almonds), seeds (pumpkin and sunflower) all about 70% and then I add a few things like, a few bites of chicken or beef or pork, maybe some cheese, a few olives and olive oil and vinegar or lemon (30%).
I use a NutriBullet and add a mixture of 30/70 including nuts and seeds and coconut milk.
In my refrigerator I have a mixture of shredded fresh beets (purple and/or golden), carrots, turnips, rutabagas and parsnips. When I want a snack or even for breakfast, I put some in a bowl and add some oil and vinegar and eat it just like that or sometimes I add some nuts, raisins and dried coconut with some low fat sour cream (organic). I also put some on my salads.
I buy many vegetables and have them washed and cut and in containers ready to grab when I need or want a snack.
For my dinners, I usually eat a big salad, or a 70/30 meal. 70% vegetables (which can be cooked but best if raw due to becoming more acidic when cooked or processed) that can be a small salad, sometimes some sweet potato or regular potato (with butter; it is neutral pH) a few bites of meat/fish/poultry. I do occasionally make a casserole type meal keeping in mind the 70/30 rules. Stir-fry dishes are easy to make into a 70/30.
My biggest problem is trying to do breakfast at 70/30. Oatmeal or brown rice is not the best but I add nuts, seeds, coconut and dried fruit or fresh berries. A nice salad for breakfast is another option.
Occasionally I add some of my favorite acidic things in a (or to a) meal as part of the 30%. This way I do not feel deprived. I can eat some things I enjoy and I am not missing out on what everyone else or Calvin is eating.
I will use pasta (brown rice or corn or a mixture of both) to make spaghetti and then eat more of the sauce and vegetables or a salad. In that way I do not feel cheated or left out.
You can basically eat whatever you want that is not a trigger as long as you use the 70/30 rules. It is just incorporated into the 30% part of the meal.
Many wonderful and delicious recipes can be found on the Internet under “alkaline diet recipes” or “pH balance diet recipes.”
The following are links to articles related to diet and Periodic Paralysis:
The weekly diet chart should be an aide with meal planning. The alkaline diet takes some time for planning, purchasing and preparing the food. It is best to have it all done ahead of time and ready to easily grab as needed. Be sure to allow yourself enough time for these things in order to avoid or reduce stress.
Besides shopping in specialty stores and cooking from scratch, you may also decide use things like a sprouter for seeds and beans, or a food dehydrator. You can even choose to grow your own organic garden!
The third and final part of managing our symptoms and paralysis includes discovering our triggers or the causes of them and then simply avoiding them. The following links are articles about how to figure out those triggers or causes.
Identify And Eliminate The Triggers Of Periodic Paralysis: Part One