19 Diet is Huge

Food and nutrition play a crucial role in promoting good health and managing chronic diseases such as ALS. Food provides the raw material for building motor neurons and neural connections. The standard American diet is unhealthy and promotes disease; therefore, it is important to learn how to improve your diet.

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If you are in the advanced stages of ALS, then just getting enough calories into your body to maintain minimum weight and energy is a big challenge, and what you eat is secondary. This is especially the case if you have a problem swallowing or are on a feeding tube. Just getting through the day is enough of a challenge. However, if you are not dealing with advanced stages of ALS, diet is an important consideration.

 

Growing up, our family had nourishing meals, and I became interested in the vitamin supplements my parents took. Early on, I learned from my dentist that I could minimize dreaded cavity drilling if I stopped eating candy and minimized other sweets.

 

As an adult, I thought my diet was healthy because I avoided sweets and junk food and ate lots of fruits, vegetables, whole grains and healthy protein. During this time, I was also being treated by my allergist for food and airborne allergies that triggered migraine headaches and sinus infections. My symptoms improved, but we never  got to the underlying problems.

 

At the time, I was not fully aware of the importance of an organic, non-GMO and anti-inflammatory diet. I naively thought that the Department of Agriculture and Environmental Protection Agency were ensuring that our food choices were safe and reasonably nutritious. Sadly, I was wrong.

 

I also wasn’t aware that medical school students were still receiving very limited information on nutrition. Given the importance of nutrition, it is incredible that most medical students don’t have a class on nutrition. It’s no wonder that many medical doctors know so little about nutrition and supplementation, and in part why they over prescribe pharmaceuticals with serious side effects.

 

In conventional Western medical practice, you are ridiculed and marginalized when you emphasize diet and supplementation. Sometimes you are described as a quack. It is all about pharmaceuticals. It is all about diagnosing and treating diseases, rather than preventing them, to facilitate good health and wellness.

 

This in no way is to suggest that drugs will not have the central role in the treatment and eventual cure of ALS. Those of us living with ALS and the entire ALS community are anxiously awaiting these breakthroughs. Many of us participate in and closely follow promising drug clinical trials. I am only suggesting that nutrition, inflammation and neurotoxicity also play an important role in dealing with ALS.

 

It was not until a few years ago that I learned that my high-carbohydrate and low-fat diet was not as healthy as I thought. At the time, I was dealing with an intractable small intestine bacterial overgrowth (SIBO) infection, and my doctors were not able to give me much relief.

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Finally, I asked for the advice of Erica Elliott, MD, one of my medical doctors, who is board-certified in family practice and environmental medicine. She is remarkably knowledgeable and experienced in diet, nutrition and supplementation. Dr. Elliott first helped me eliminate my intractable intestinal infection with a very strict anti-inflammatory diet and then suggested that I add ketogenic diet components. A ketogenic diet is heavy in healthy fats, which are essential for optimum brain and nervous system function and therefore are important for those of us with ALS.

 

For years, unhealthy carbohydrates have dominated the food pyramid and most American diets. Healthy fats have been demonized and replaced by unhealthy low-fat products in most people’s diets. Medical doctors have gone along with this while often over-prescribing dangerous statins to lower cholesterol. Recently, scientific research has shown that inflammation is the real health problem, not cholesterol. In fact, an appropriate amount of cholesterol is critical for good health.

 

My current diet:**

• very heavy on vegetables (especially cruciferous and leafy green)

• heavy on healthy plant-based fats

• moderate on meat, poultry and fish

• very low on carbohydrates

• small amount of fresh fruit

• absolutely no refined sugar

• no dairy,

• no wheat.

 

** Each person should follow a diet designed for their specific nutritional needs.

 

In addition to having a healthy diet, supplementation is very important because the overuse of herbicides and other synthetic chemicals on agricultural soils has greatly reduced the nutritional value of our food. Dr. Elliott and Dr. Herscu, my naturopathic doctor, have provided me with a list of over 20 vitamins and other supplements that address my specific health needs. For example, they address my food allergies, autoimmune conditions and susceptibility to respiratory infections. When the COVID -19 pandemic began, additional supplements were added to strengthen my immune system. Some of these supplements are to support my brain and nervous system functions related to my ALS. I closely follow this supplement regimen.

 

You are probably wondering why so few people are eating an anti-inflammatory and ketogenic diet if they are so healthy for you. One reason is that few people have heard about this diet, and we live in a carb-addicted world.

 

If you are on a limited budget, you can learn which are the most important supplements and just take those. If you cannot afford organic food, minimizing junk food and eating more healthy vegetables will help. Eating habits are difficult to change, but if your desire to feel and function better is strong enough, you can make significant changes to your eating habits. Just do what you can and don’t get stressed out about what you are unable to do.

 

However, as long as we continue ingesting neurotoxins, merely adding good things relating to diet and supplements will have only a limited effect. Chronic inflammation is a major source of brain deterioration involved in neurological disorders. Pesticides contribute to inflammation and make it worse. Unfortunately, few people realize this.

 

This is why both Dr. Erica Elliott, MD, and Dr. Brant Cortright, PhD, urge anyone who will listen not to eat foods that include American wheat containing high concentrations of Glyphosate. Dr. Elliott’s medicine blog has two extensive articles on problems with wheat and problems with gluten and Glyphosate. Eating organic food can reduce your exposure about 75%. Dr. Cortright’s book Holistic Healing for Anxiety, Depression and Cognitive Decline describes the tremendous problems neurotoxins have on both our mental health and overall health. He offers specific strategies to address these problems.

 

For more information, neurologist David Perlmutter, MD, has written and spoken extensively about the devastating effects a diet high in sugar and carbohydrates has on your brain and body. See, for example, his widely read book titled Grain Brain.

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If you are struggling to swallow and are just trying to get enough calories to keep up your energy, you are not going to be concerned about whether your food is healthy. But if your ALS has not reached an advanced stage, diet is important.

 

Drinking adequate fluids is also important. After two difficult kidney stone surgeries, I drink 6- 8 glasses of filtered water with fresh lemon each day. My other drink is fresh organic ginger tea. I haven’t had a soft drink in many years, and since going on this diet, I skip caffeine and alcohol.

 

According to ALS News Today and Your ALS Guide, sufficient nutrition is a major concern for those of us living with ALS. Due to the disease process, we are especially at risk for malnutrition. We burn calories faster than normal because our diminishing muscles must work harder and harder to make up for our muscle loss.

 

Eating less due to fatigue and problems swallowing leads to weight loss and additional muscle wasting beyond the breakdown of muscles caused by the disease itself.

 

If swallowing safely becomes a problem, utilize safe swallowing practices such as chewing your food extra well and tucking your chin to your chest when swallowing. Eating soft foods are helpful, including the use of a blender.

 

If this is not sufficient, then consider having an abdominal feeding tube installed to help manage nutrition and fluid intake. You can still eat or drink with a feeding tube unless swallowing becomes an issue. If you choose a feeding tube, make sure it is installed before your pulmonary function becomes so low that this surgery can no longer be performed. This unfortunately happened to one of my ALS friends who waited too long.