Glucose - wrong attitude/ignorance, or what?

jethro

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please, share your opinions:
first thing after i was diagnosed was going to buy energy drinks. at that time, i was strong, didnt see any benefit, i got 5 kilograms on and i quit. now, when i am weaker, i found this two years after i was diagnosed.
 
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Nikki J

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Well this was in fruit flies not people. However a bmi of 31 or so correlates with slower progression and a higher bmi was recently associated with lower rates of ALS.
 

jethro

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when i was diagnosed with als, i had 105 kg. my theory was that metabolism of carbohydrates was corupted. so i eat many carbs. actually, it is about proteinopathy related to misfolding tdp-43. mechanism is still unknown. i started to gain weight, but i declined slow. after i read some articals about carb's, i decided not to use anymore. now i have app 90kg, eat MCT mostly, no carbs at all, and i am deteriorating powered by g-force. it is incredible that accurate relation carbs-als is not investigated in details, but relatio ayahuasca-als is (not in details). flies? worms? zebra fishes? thats what they talk about on encals in GB, oxford in 2018. what to say that no philosophy was used in revealing autophag mechanism in 2016? ECS found in late 80ies... we are still on worms. at the time of lou gehrig, nobody talked about worms, so that is significant progress.
bmi? it is average... doesnt say is it body builder's bmi or some mcdonald's fan. smae bdi, but bodybuilder has mass in muscles, fan has a mass in front of him. muscle is a heavier than water, fat is lighter.
anyway... als is mostly treated in humans experienced in animal models first (i.e. induced als in mice - als is bunch of diseases, not one).
carbs bring obesity. if we use carbs, we have to burn them. problem is that pals are too weak to burn intake by work out, so they precipitate in a liver etc.
oh, almost forget: Glycolysis upregulation is neuroprotective as a compensatory mechanism in ALS
what do we have to lose? carbs, here i go again!
 
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sassy

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Not sure of the medical jargon but my husband has slow progression but a super fast metabolism...... he has to eat lots of carbs or he will lose weight daily. He used to eat super healthy but now we look for foods with the highest calories. Doctors always look puzzled when I say other than drop foot his first symptoms were loud stomach growls...... If anyone has any suggestions on healthy high caloric food- we would welcome any advice..... you can't eat 450 calorie donuts every day.......or twice a day..... oy....
 

KarenNWendyn

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If anyone has any suggestions on healthy high caloric food- we would welcome any advice...
Odwalla juice smoothies or Kate Farms meal replacement shakes as supplements to his regular diet. The Odwalla is in the supermarket. The Kate Farms you can buy on line. You can also take Carnation Instant Breakfast and add things to it like yogurt, eggs, coconut oil. A good blender is a valuable tool.
 

jethro

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Not sure of the medical jargon but my husband has slow progression but a super fast metabolism...... he has to eat lots of carbs or he will lose weight daily. He used to eat super healthy but now we look for foods with the highest calories. Doctors always look puzzled when I say other than drop foot his first symptoms were loud stomach growls...... If anyone has any suggestions on healthy high caloric food- we would welcome any advice..... you can't eat 450 calorie donuts every day.......or twice a day..... oy....
use enzymes too! especially proteinase and amylase. i suggest using "slow carbs" (palatinose) with low GI. sassy, does he work out? when he had onset?
 

KimT

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I had the exact opposite experience.

I always had a fast metabolism and struggled to stay above 105lbs. @ 3,000 calories a day. I was a heavy exerciser and in great shape so that was part of it. I also had a very high muscle to fat ratio (always under 20% body fat.)

After my diagnosis I kept exercising as best I could but gained a ton of weight because I started eating simple carbohydrates and Mayo scared me into gaining weight with junk food. Then my metabolism slowed and my TSH showed hypothyroidism. I corrected it with iodine but retained most of the weight.

In 2017 I decided to try a modified keto diet, keeping fresh organic fruit and sweet potatoes but eating lots of good fat and sufficient protein. I lost about 10 pounds but increased my muscle to fat ratio once again. Then I kept losing weight, and secondary to constipation developed an anal fissure. I went back to carbs, mostly complex and gained back the 10 pounds I lost. I feel sluggish now.

Everyone is different. I do know when I lost abdominal weight my breathing actually got better. Because I'm different I plan on not gaining anymore weight (today I was up to 144, the highest I've been since 2016 when I sprained my ankle.) I am also eating healthy food and eliminating junk food in favor of nutrient-dense shakes (every morning I have a shake with blueberries, banana, kale, almond, cacao, coconut, maca, and Greek yogurt.) If I start to lose too much weight I'll just add coconut oil and avocados to my shakes. I don't want to develop metabolic syndrome. I have very small bones and I believe I developed joint problems from gaining 30 pounds too quickly. Maybe not but the pain lessened when I lost 10 pounds in 2017. Perhaps it was just the junk adding to inflammation.

We all do our own research and have our own ideas. BMI is a very misleading number and I'm surprised it wasn't normalized for bone size. If my BMI were 31, I'd be morbidly obese since my ring finger is 4.5 and I have very small bones.

If I had dropped weight quickly, I'd probably be doing things differently but, for now, I'll continue to eat healthy and work on dealing with pain.

I've also noted that things can and do change with ALS so it's very hard to have a plan and think it will help throughout the course of the disease.
 

sassy

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Thank you for the suggestions.
 

sassy

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use enzymes too! especially proteinase and amylase. i suggest using "slow carbs" (palatinose) with low GI. sassy, does he work out? when he had onset?
He never worked out but was extremely active. In a typical workday he would have more than 20k steps and primarily had a desk job. I believe he has flail leg als so his disability remains in one leg at this time, although he has lost a lot of muscle mass in both legs. Without the AFO- he would fall multiple times a day. We are very thankful for his slow progression and enjoying every day....
 

lisa g

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My son-in-law had sent me that article this morning. I have always had fast metabolism with at times my thyroid numbers being out. Have not had to take any medication for it. My endocrinologist suggested taking in more carbs to slow it naturally. I have always had a good diet and had been a vegetarian. In 2018 I went vegan. I lost 13lbs that I couldn't afford to lose, I'm 4'11 and small boned.. I went down to 93lbs. I attributed it to new diet and dropping the dairy. My Pcp was more concerned. After my diagnosis I had trouble gaining weight so I increased my calorie intake from 1600 to 2,000-2,300 hundred daily. I have been able to put on 10 lbs and keep it on. I see my Pcp on Friday I'm sure he'll be happy.
 

sassy

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Lisa, that's great that you put on 10 lbs........
 

jethro

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since amyotrophic means "muscles have no nurishment", is it possible at all to gain - muscles? ok, maybe it sounds weird if related to als,
BUT
obviously disbalanced body's chemistry for some reasons just "ignore" proteins ( even non-esential proteins!), disabling getting muscle's mass, did anybody think about enzymes which initiate/support proteins and carbs breakdown? first, when i was diagnosed with als, i was walking very hardly. i thought i have to loose mass (fat), so it is easier to walk with 20 pounds less.
i've been told not to do that!
ok, i didnt loose my weight intentionally, but i am loosing mostly muscle mass on a daily basis! my hands are constantly warm and wet (sweat), foot are warm and swallen, and that seem to be kind of valve where my energy leaks.

i was very active (gym, weight lifting) and my intake was very high. that intake, same as burning taken calories, just stopped due to new job, young kids, business etc. my body which is used to high intake and burning for decades, suddenly coped with no intake and no burning.
then als came.
i started to work out every day (again), but my muscles vanish. not power. weird. even i take BCAA. obviously, BCAA are also ignored.
i decided to elevate proteins intake, slow carbs and must is MCT (immediatelly before work out) and enzymes (amylaze for carbs and proteinase, cause my body and metabolysm just ignore proteins i take).
so, we are on a body's route 66 again: gut-brain
my tremour is caused by lack of energy.
anybody chose that or similar way?
 
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affected

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I thought amyotrophic means atrophy of the muscles. Karen?
 

Nikki J

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Correct, Tillie
 

jethro

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fyi:
1.
The word amyotrophic, when broken down, means muscle nourishment-with "myo" meaning muscle and "trophic" meaning nourishment.
from What does the word amyotrophic mean? | Amyotrophic Lateral Sclerosis (ALS)
2. Amyotrophic is derived from the Greek word 'amyotrophia,' meaning lacking muscle nourishment and sustenance.
from ALS (Amyotrophic Lateral Sclerosis) - MyBioSource

no-means "a" (grece)
muscle-means μυς (mus)
feed-means τροφή (trofe)

atrophy is "non feeding", a-myo-trophi refers to non feeding muscles.
 
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