In today’s article, I will share with you some email communications between myself and a female 13 year survivor of ALS, regarding my interest in the meanings and reasoning behind her choice to consume processed sugar as part of her daily diet even though she has such a serious health problem. After reading online about her choice to consume processed sugar, I invited her to enter into a private email discussion with me to explore some issues that I am researching regarding the experiences, beliefs and motivations of people with ALS about eating sugar.
The results of our conversations were so meaningful to me and I believed would benefit others, so I asked her if she would mind me publishing some of our email messages if I did not disclose her name. She consented. I have included two email messages from each of us, only correcting spelling and punctuation. Before sharing these communications, I will report a few facts about this person with ALS (PALS), who I will refer to as Mrs. A. She reported that, “My diet is high protein diet salmon, chicken, eggs, cream cheese and grape jelly, sweet potato, ginger ale, yoghurt ice-cream sandwiches, chocolate pudding and chocolate kisses.”
Mrs. A told me that she was not aware of evidence that sugar consumption could weaken immune system functioning, but was aware that people with ALS oftentimes die related to compromised immune system functioning associated with respiratory infections. She also reported that she was not aware that sugar may contribute to inflammation, but was aware that ALS researchers believe that inflammation contributes to some faster cell death in PALS and were concerned enough to research the effects of COX-2 inhibitors on inflammation in ALS.
In response to my question, “Do ALS patients take it to mean that the authorities believe that their case is hopeless and not worth the effort of healthful choices?” (when they tell PALS to feel free to consume sugary treats like chocolate syrup and foods that they had previously been told to avoid for health’s sake), Mrs. A answered, “Yes I was told eat high fat food. I thought wow I am being told to eat everything I was avoiding my whole adult life. I was told you will live longer if I kept my weight up.” In response to my question, “Do they (PALS) believe that they indulge more in foods that are not considered to be healthful, because of the many losses that they have experienced subsequent to ALS?”, she answered, “Yes.There is no cure or treatment for ALS. How many people continued to smoke when they have cancer?”
Now, here is an email communication from Mrs. A to myself:
“…I saw the video from November when you danced with your girlfriend. You have speech involvement as I do. Yours is somewhat worse. You show lifting 120 pounds. Yet you have no muscle and there is something assisting you. You have no increase in your weight compared to earlier photos. I just hope someone isn’t profiting on you. Eating the diet you’re on will definitely make you healthier, however it will not cure ALS. At this point I have no desire to slow it down. I don’t care about walking or dancing or lifting weights. I want speech and breathing improvement. None of that was convinced of in your tape.
“What we have is a variant of ALS. Since we have a slow progress and still have good health, has nothing to do with diet. I know vegans, vegetarian runners who were dead in six months to two years.
“If you told me Positivism was important to fight this dreadful disease, I would agree on that. The proof of that is when people get better after taking a placebo. The mind is powerful.
“I have been taken by chiropractors, nutritionist, Holistic medication, infectious disease doctors, and the result was in my bankbook only. I want to believe they really believed it was going to work and were not profiting on desperate people. I decided five years ago there is NO cure or TREATMENT for ALS.
“Here is some measures l have taken and there is a lot more:
detox my feet in water
Dr Craig follow up email communication to Mrs. A:
“Dear Mrs. A, My breathing has improved, and I have never said anything about a cure. I believe that you are mistaken and deceiving yourself to say I am doing as well as I am because I simply have a slower progression of ALS. You have a point about how on the one exercise machine it is hard to determine how much the person was assisting me, because I was requiring them to hold my elbows up. However, you might want to focus on the fact that I’m still weight lifting and people do not assist me on the other machines. Most importantly, my breathing is way better than it was three years ago. One year ago, I did over two hours of yoga in a room that was between 105 and 110 degrees. We have video and photos. Two years before that, I would feel like I was suffocating if the temperature in my home got to reach 76 degrees.
“From all of your answers to my questions and all of your comments, if you review them carefully and really think them through, you seem like you are willing to sacrifice your wellness and longevity because of your value of the comfort you feel from eating foods that have a negative impact on overall health. Just because somebody gets ALS, that doesn’t mean that somehow junk foods magically don’t have a negative impact on health. They have at least the same level of harm that they had before the individual began to experience symptoms of ALS. In fact, there is good reason to believe that eating those foods will have an even greater negative impact, given what is known about the role of sugar in inflammation and weakened immunity and the fact that the ALS organizations point out that inflammation and weakened immunity can shorten the lifespans of PALS.
“Yet, with a straight face tell PALS to eat as much sugar as they fancy and whatever else, because PALS who maintain their weight have greater longevity. It is true that research has demonstrated that people who maintain their weight have greater longevity, statistically speaking; nonetheless, based upon what I know about principles of health, it is ridiculous and destructive to in any way to recommend anything other than maintaining weight gain through choosing nutrient dense calories. I find it amazing that I am the first person I am aware of who has publically pointed out the destructiveness of their approach. They have not implemented my recommendation that if they keep recommending consuming sugar as one strategy for weight gain, that they educate PALS about what nutritional science understands about the negative health consequences of consuming sugar.
“I believe that one reason that they would not want to make such educational statements is that then they would be openly acknowledging that they have been advising PALS with vulnerable immune systems and a disease associated with inflammation to consume a diet that is not good for the immune system and inflammation. The conflict is there to see for everyone, yet it is like the emperor has no clothes and no one is talking about it. The metaphor doesn’t exactly fit, because in this case so many people seem to have the ability to really not see the contradictions.
“Will I succeed when I take this issue across the nation educating people? Or, will there have to be the results from my campaign future scientific research demonstrating that a nutrient dense high calorie diet creates greater wellness in PALS than a high sugar diet, even shortened longevity? How much of a difference in wellness or longevity will the study have to demonstrate to make a difference in PALS choosing to eat for optimal wellness? Does it have to be one year or greater for a person with ALS to decide it is worthwhile to give up a sugary and starchy diet?
“On rational grounds, a person with ALS could be said to be behaving in a suicidal fashion if they continue to consume a sugary diet after they have become acquainted with scientific research demonstrating that such a diet has been shown to be associated with a shorter lifespan in people with ALS. The writing is on the chalkboard, thanks to Dr. Craig. What will ALS organizations, and anyone else, who have advised PALS to consume sugar for years say about their behavior that has influenced PALS of the past to live shortened lives? I am here asking ALS organizations and the rest of the medical community that recommends eating a sugary diet to start speaking and behaving based on what is known by science.
“I value a life with the greatest awareness of my full powers for wellness, and an understanding of some depth regarding any aspects of my personality that would not be united to fully support my optimal wellness. Many people with ALS, I believe, have mixed feelings about living with the enormous losses that in many cases occur relentlessly, one after the other. When such conflicts exist not fully in awareness, an individual may happen to not behave in a way to obtain their optimal wellness and not be aware that there is a part of themselves that is not in alignment with them doing what it takes to have the greatest wellness possible for them. This emotional work takes great effort and persistence. I have worked with a psychoanalyst, who comes to my living quarters and takes Medicare, for over 13 years.
“I invite you to do some exploration related to the discussion that we have been having. Now, you have even greater information about how your level of sugar consumption could possibly compromise your wellness in serious ways. How many months of greater longevity and wellness would be required for you to give up the junk foods in your diet and substitute nutrient dense calories? If you would be willing to sacrifice one year of life for eating junk foods, don’t you believe that would be suicidal? I encourage everyone facing such a serious health challenge to honestly face their choices for greater wellness and any resistance to making such choices. I believe great numbers of people are dying sooner than they need to and are unaware of the fact that their own choices played a role in hurting themselves. Would you like to be able to look in the mirror on the day when you breathe your last breath and know that you loved yourself enough to have the greatest wellness possible? With your current diet, I am not sure that you will be able to have that experience. Blessings, Craig”
Mrs. A replied with the following:
“Hi Craig, please read the article below from the MDA.
I have gone to your sight and read the raw diet with an open mind.
My first problem.There isn’t enough calories to gain or maintain my weight. My second problem is inconvenience for my husband preparing for me shopping daily when he can’t cope with what’s on his plate. My third is cost of your regiment. My fourth is the quality of your life. Craig, I don’t think you are doing any better than I am with your diet. My fifth is I don’t want to prolong my life unless my speech and use of my arms are totally restored.
“You have not proved that to me and you have been on this for years. You are lifting weights which is contradictive. Fatigue is the worst thing for ALS. You are very underweight and I feel that should be addressed with whatever your diet provided for weight gain. Do you have a feeding tube? My skin hair and nails are incredible go on face book and see me. So why should I fix what works for me?
“I know you have passion about your beliefs. But I am not convinced.
Yes, I wound be happy to continue our emails. Mrs. A”
I will end this posting with my reply to Mrs. A’s message above:
“Hi Mrs. A, …I am so grateful for you and how this may open up important discussions in the ALS community. I have read the MDA article before. I believe that they are off base with suggesting a chocolate syrup recipe and not stressing the importance of choosing nutrient dense calories over calories that don’t benefit the health of the body. I have maintained the same weight for a long while on my raw foods diet. I have as much fat as feels comfortable on my body, and then some; in fact, because of the research on longevity and ALS, I eat to maintain a little Buddha belly. I have respect and appreciation for your willingness to openly explore these issues.
“I am not a certified dietary expert, yet I am not sure that you are making a correct assumption about my diet not having enough calories for you. I invite you to calculate how many calories that you are consuming each day, and I suspect that you would be able to find enough nutrient dense calories to provide you with the ability to maintain the weight you desire. I use avocado, an abundance of healthy oils and raw almonds as some of my nutrient dense strategies for maintaining weight. I am not meaning to imply that a 100% raw foods diet is the best choice for everyone’s optimal wellness, although I have read enough that has me believing that those who would like to achieve the optimal wellness possible for them to consume a high alkaline diet that is at least 60-80% raw. Ideally, blood work would be conducted under the supervision of an integrative medicine physician who is educated in the most advanced nutritional science, to make adjustments to diet when helpful.
“The fact that you may have heard of some raw foods athletes who have died within a few years of diagnosis does not, at least in my mind, make it reasonable to justify feeding our bodies with substances that are not supportive of minimizing inflammation, a strong immune system, healthy alkalinity, and optimization of mitochondria function. My THE HEALERS campaign advisory team is full of nationally and internationally recognized leaders who have helped great numbers of seriously ill people have significantly improved wellness with intensive nutrition like I am suggesting, in their medical clinics and healing institutes.
“Because from the beginning my approach to ALS was that I would eat, drink, think and pray in a way that would make me the strongest, holistically speaking, when I learn of anything that could strengthen my life force it becomes a part of my lifestyle. Such an approach is amazing; a life dedicated to holistic wellness, in which behavior is guided and directed based upon what is known about the effects of living in accordance with natural health principles. I strive for the greatest possible wellness and I see no good reason to allow myself to behave in any way that I understand could have me live with less than possible wellness or possibly lessen the length of the gift of this life with which I have been blessed.
“I feel some sadness about how many people with ALS do not take on holistic wellness as an intense commitment, to the extent that their means allow. If you really wanted to see if you felt healthier after two or three months on an intense sufficient calorie nutrient dense diet, I believe that you might be able to modify it and be able to afford it. We are not talking about supplements; instead, we are talking about intense nutrition. Regarding your concern of putting a burden on your husband with you adopting a nutrient dense diet, there are possible modifications that might make it not such a big deal. If you did it for two or three months and felt more life force, less fatigue, and your blood work was healthier, don’t you believe that you and your husband could find some way to make it work that would be good for everyone? You say that you do not want to prolong your life unless your speech and arms are totally restored. Doesn’t that almost seem like you are going on strike with life, like you’re saying either give me a cure or this and that improvement or I am not going to do what I know will be best for the wellness and longevity of life?
“You are not convinced that I am doing as well as I am to a significant extent because of my dietary choices. When I do conduct dietary research, how much of an increase of wellness, health and longevity will the results have to demonstrate in order to interest you in choosing a diet based on nutritious calories to maintain a weight? If a study was published tomorrow showing that PALS who follow a diet similar to mine have two years greater longevity, stronger immune system functioning and less hospital visits, would that be enough to motivate you to modify your diet? If not, would you be willing to take a pharmaceutical pill that was shown to produce the same results? (Note: I meant this as a hypothetical, because there is no such drug). I am grateful for your willingness to explore these issues with me. Sincerely,
If there is substantial interest expressed in hearing more of the evolving meaningful explorations between Mrs. A and myself, I will publish a follow up article in which you will, among other things, hear her refer to me as a fanatic and raise an analogy between myself and Jehovah Witness missionaries. I am happy to know Mrs. A.
Craig Oster, Ph.D.
I am interested in your dietary plan. I have been diagnosed with ALS only six weeks ago and would like to do what ever possible to aid my life. I have significant muscle weakness in my left lower leg and that is progressing to my right leg now. I would like to return to work in four weeks now that my diagnostic testing is complete. I hope to remain there as long as possible. Can you help me?
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I believe a vegan or vegetarian diet exacerbates symptoms of ALS. These diets skimp on fats, and do not contain the right kinds of fats. Saturated fat is good. All of the people I know following a vegan or vegetarian diet are in bad health and having inflammatory problems, like skin cancer and liver issues. I think ALS is another disease with its roots in inflammation.
I believe fats are important for ALS.