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Hi my boyfriend has been diagnosed with ALS. I am having difficulty finding a diet protocol for this disease. Does anyone have any ideas or pages they can direct me to to find out more please?
 
LOTS of calories. Your foremost aim is to ensure he does not lose weight. Weight loss definitely has a link with speed of progression.

A balanced, healthy diet is best, however calories are needed so pack extras in by creating sauces, gravies, making smoothies or whatever.

What you use will depend on dietary preferences or allergies. So you can use lots of butter and cream, or if non dairy you can use coconut oil, nuts etc

I'm very sorry for the diagnosis. How is his ability to swallow?
 
It depends on his ability to eat. So far, I've been able to eat fine and packed on lots of weight, all fat. I've gone back to eating healthy and plenty of fruit and veggies for antioxidants. It's easy to add calories the healthy way. You can add coconut oil and avocado to smoothies. Nut butters also add nutrients and are high in calories.

If his progression is slow, I would focus on eating for health and to maintain weight. Healthy food can taste great. Lately, I've given up ice cream in favor of Greek yogurt with organic cocoa and nuts. I sweeten it with stevia and it tastes great. That is my dessert.

I'm also in favor of whole, organic food blended for tube feedings or using a formula that is food based.

I make sure I eat plenty of good fat for my brain and plenty of good protein for my muscles. Organic, grass fed steak and eggs with avocados is a favorite. I also take many supplements, including medical weed every day.
 
Hi guys, many thanks for your replies. So you are not doing the deanna protocol or a ketogenic diet or stem cell therapy then? I wonder how people have reversed this condition. No he is able to eat he is in the early stages where he cannot really walk very far, muscle spasms, cramping he has not progressed yet to being in a wheelchair.
 
Hi there, so sorry to meet you here. I myself try to eat much the same as I did before onset, but there is nothing you can do as far as I know to reverse ALS. Dose he have a feeding tube? if not it sounds like he needs one. As far as muscle spasms and cramps his doctor can give him medication for that
Al
 
I created my own "protocol", if you will, for my dad. LOTS of fat and calories, small, regular feedings. Bulk up protein shakes with nut butters, coconut butter, mashed potatoes will milk, butter and gravy, etc. My dad couldn't eat dry foods like cereals or some meats. We were very successful at keeping his weight up over time.

We did not follow Deanna or any other diet plan other than high fat and calories.
 
heavenly I'm very sorry but people don't reverse ALS, particularly not by any of the things you mentioned. Truly we wouldn't be here, there would just be a detailed proclamation and instructions if there were some protocol that would reverse this disease.

Keeping calories up, preventing falls, and living every day to the fullest is what we highly recommend.
 
LOTS of calories. Your foremost aim is to ensure he does not lose weight. Weight loss definitely has a link with speed of progression.


Does anyone have a link to any research articles about weight and speed of progression? I certainly believe there is a link but am wondering if we have got it backwards when we imply that maintaining weight slows progression. I strongly suspect the link is the reverse and that weight loss is simply a reflection of the speed of progression. It reflects loss of muscle mass, increased effort in breathing which burns a lot of calories, and of course swallowing problems. I am wondering if there is any research indicating that maintaining weight is helpful rather than relective.
 
I believe the research was a correlation not causation. You are doubtless aware of the study that found a bmi closest to 31 ( which is definitely fluffy) correlated with longer survival. I think that is the study people refer to.

There is also this Alteration of nutritional status at diagnosis is a prognostic factor for survival of amyotrophic lateral sclerosis patients -- Marin et al. 82 (6): 628 -- Journal of Neurology, Neurosurgery & Psychiatry which looks at weight change as a prognostic factor but is certainly not answering the chicken or the egg question.

Losing weight through inadequate nutrition though will result in loss of muscle mass as every dieter is told so I would think weakness would progress from weight loss in addition to the processes of ALS
 
Good question Diane!

I'm not sure how much it matters about causality.

For instance - if a PALS is starting to lose weight and is progressing quickly, if they do not pack in a diet high in calories they will lose weight faster and progress even faster.

Hence, it would seem that it is accepted that a good approach from the very beginning with this disease is to eat enough calories to maintain body weight, or put on weight if already low.

We know fatigue is a big part of the disease, we know PALS burn lots of calories at a high rate just to perform basic functions like breathing and eating. So to me, chicken and egg aside (though it such an interesting topic for another time), eating a high calorie diet is what is recommended for PALS.

A high calorie diet I will just add is not guaranteed to give a PALS slow progression. It is likely to slow their progression however. Proving this has always been the biggest issue because every PALS progresses at their own individual rate and plateaus can happen. So how we 'prove' anything slowed down progression is terribly tricksy, and proving how much it slowed progression is even tricksier.
 
Hi guys, many thanks for your replies. So you are not doing the deanna protocol or a ketogenic diet or stem cell therapy then? I wonder how people have reversed this condition. No he is able to eat he is in the early stages where he cannot really walk very far, muscle spasms, cramping he has not progressed yet to being in a wheelchair.


Interesting you ask. My GP is a functional medicine doctor and treats a lot of MS patients. I saw her today and we talked about how uncomfortable putting on 30 pounds has made me. I have small bones and my frame had a hard time accommodating that weight. My BMI is now 24. However, my bones are very small and a BMI of 24 on me = fat. I want to preserve all the muscle I can. My doctor made three dietary recommendations. She based it on my relatively slow progression (especially before I fell) and my current eating habits. She suggested a short trial of a modified paleo diet. She suggested I up my good fat even more (omega 3s and coconut oil). She also suggested I get my sugar from fruit, not ice cream and other junk. She also told me to get in the pool as often as possible and, at least, 3 times a week. She did a more comprehensive heavy metal test and also tested my minerals.

I have a Vitamin protocol I developed for myself. I'm constantly refining it based on my blood work and other factors. I don't know if I'll feel better or worse on the modified Paleo. I eat very few grains so I won't miss that. I plan on keeping organic Greek Yogurt in my diet because I think it's good for digestion and is a good source of protein.

If you want to read some Vitamin protocols that people believe are helping slow progression, check out ALSTDI web site. Also Wikipedia just updated their page on commonly taken supplements for ALS and explained the reasoning behind those supplements. It's definitely interesting and possibly helpful.
 
Kim I hope you make a thread and keep us updated on how you go with this!
Definitely putting on 30 pounds is pretty huge, particularly for a small person and is quite different to preventing weight loss. We always advocate preventing weight loss rather than packing the kg on of course :)

My Chris really never carried body fat before ALS, and he lost 60 - 70 pounds which put him into the realm of looking like he was in a concentration camp, literally. This weight loss happened over less than 11 months.
 
I was told "think high" - high calories, high fat, high protein, high in vitamins. Honestly, around here we don't care if the calories part comes from malts or chips or whatever - all calories are good calories. My former vegetarian and organic only husband has gone no holds barred on food choices. However, in with the ice cream and meats we do make sure he gets plenty of vegetables, etc.

Our challenge is a bit more than some because my husband before ALS was 5.6, 125 pounds and NOT skin and bones. Very low body fat but most of his weight as muscle. Keeping weight on him is essential with NONE to spare, and thus far we have succeeded.

Small changes make a big difference, my husband did not suddenly become a glutton. Butter on the toast, 1.5 times his former servings of proteins, dessert most days, even just little ones. You can so easily add calories to a diet. We have also increased vegi servings.

It's a new thought pattern for a very disciplined eater but it really helped him to realize this was the NEW discipline.
 
Hey guys,
It's not true that it cannot be reversed - why are there so many people out there who have done this then? The problem is that they don't detail their diet or supplement protocols so the information is scattered around online or they yes I cured myself and nothing about how they did it.

Has anybody heard of KEFIR a highly potent drink with about 70 strains of bacteria you make yourself which if 80% of your immune system is in the gut makes sense to take this - I cured my extremely bad ibs completely with it. Also what about concentrated MARINE PHYTOPLANKTON which is 3,500 x stronger than vitamin c and a very recent study are finding amazing results for all diseases. I cured my kat of kidney failure, weight loss and bad health with it completely. It is a miracle thing and it's cheap 1 litre of the stuff costs about £20. You drink about 100ml of that a day and you will probably see changes in your physiology.

It seems to me if you get your amalgam filling removed which leach out metals which affect the sensitive nerve cells, then you eat clean organic food, clean high quality supplements, drink mineral water, pink salt, and a high fat low carb diet I bet it is going to have a very positive effect. I have ordered 2 books by people who have cured als just by diet and supplements so it has been reversed and I will post my findings back here when I have read them. I do not believe there is no cure it is just badly documented online and takes a combination of things to make things improve. What do you think? Maybe I am in denial.
 
Hi affected, you say there is no protocol or diet out there so noone has reversed it. From what I gather is people have reversed it and never documented online how they did it so there is very little info out there and it is very scattered around. There are 2 books which I've just ordered on 2 people who reversed it and how they did it.

Has anyone heard on here of KEFIR or MARINE PHYTOPLANKTON how powerful these 2 are? No because it is undocumented and only very recently a study has come out saying the mp is amazing for all disorders. I cured my kat's weight loss, kidney failure and bad health completely with it. Also Kefir I cured severe ibs where the doctors / specialists told me there was no cure - I was drinking a 1.5 litres of it everyday for 6 weeks before i was completely healed. If you do what michael says and you go to town on things get your amalgam fillings removed, eat super clean, drink mineral water, eat pink salt, eat pure honey and have no carbs as they cause inflammation irritation then I bet you will start to get better. Maybe i am in complete denial but my boyfriend has been livign on ready meals for years, has amalgams about 7 in his mouth big ones, and took statins for 6 weeks then he started getting muscle spasms. There is hope you just have to go to town on things and have faith healing as well and I bet you will see results. What do you think?
 
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