Nutrtion (Types of Food, Not Consistency) Question

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vishara

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Dec 20, 2014
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PALS
Diagnosis
04/2014
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US
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ST
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Hello all.

I am wondering about other PALS' experiences with different types of diet, and how it seems to affect their progression of ALS, possibly both short- and long- term.

I tend to pay a lot of attention to my body and how things affect me. What I've noticed so far is that too much wheat and dairy fat seem to make my fasiculations worse the next day. I've also been somewhat sensitive to these foods most of my life, so it may be a "things that aren't great for me make ALS worse" instead of "these are bad for ALS".

I'm especially wondering what people have experienced with long-term nutrition. From what I can tell, there is nothing definitive, so I'm curious to see what other people's experiences have been like.
 
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Fruit smoothie 350 cals 2x / day = 700 cals
chocolate milk/banana/2 tbls peanut butter 700 cals 2x /day = 1400
gazpacho 150 cals 2x /day = 300 cals plus the fiber to keep the plumbing going :)

total ~ 2,400 cals/day, have lost 4 lbs since not being able to eat Feb/2014
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Six Boost Plus a day for 2200 calories, and I've gained 12 pounds in six months, after losing 66 lb. All my numbers are normal at my last blood check.
 
In the 30 years since I was diagnosed with possible ALS, then probable ALS, and then ALS, I have never tried any diet, supplements, nor any of the fads of foods, herbs, vitamins, minerals, chemical concoctions, protocals, etc. I just continued my usual foods, some healthy, some junk. My weight fluctuated more as a result of breathing difficulty (down before BiPAP and up after. The same before and after the vent.) In all these years and all my associations with other ALS patients, I have never seen anyone benefit from any of this. These fads give some people the assurance that at least they are trying, but too many just waste money. A healthy diet will improve general health, but there has never been any evidence that it affects the progression of ALS. And neither has any of the other diet, supplement, etc.
 
I eat a regular diet, leaning towards the healthy. I do take tumeric for inflammation and milk thistle for my liver. I also take vitamin D, but I've been doing that long before diagnosis. I probably eat more protein than many people but that is because my husband does all the cooking and he has a protein-based organism. The other supplements that people are pushing I think can be dangerous. Nobody should forget that ALS does not exempt us from kidney failure, liver failure, blood clots, and appendicitis. It happens quickly it's not ALS.
 
Hollister, if you can still eat, cut up some cantaloupe, wrap it w/ bunderfleisch/ham/etc. and have a plateful for me! please report! :)
 
Switched from formula tube feeding to blending own food after a week of nightmare reactions to the formula. Doing lots better. All natural foods, no milk due to mucus.
 
Max, you got a deal. That is one of my favorite combinations and I do seem to have some prosciutto in the house. But I won't be to mean and post a picture.
 
>But I won't be to mean and post a picture.

:)

yum!
 
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