Result of important Phase 2 study

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Interesting, thanks summerguy!

I found this part of particular interest:
Patients given the high-carbohydrate/high-calorie diet also gained slightly more weight than the other groups (an average of 0·39kg [about 0·86lbs] gained per month, compared to an average gain of 0·11kg [0·24lbs] per month in the control group, and an average weight loss of 0·46kg [1·01lbs] in the high-fat high-calorie diet group).

Weight _gain_? alright!

Now, does anyone know what a "high-carbohydrate/high-calorie" diet is? Should I stock up on Snickers..?
 
All I heard was country fried anything!

Waffle House here I come! ;)
 
Pancakes & waffles with fried eggs, syrup and butter & lots of hot coffee! or-- maybe a high calorie formula if you use a PEG.
 
That is an excellent article, and I have been giving my husband a high carb/ calorie diet since he was diagnosed. He has gained back the 30 lbs. he initially lost, and another 20 pounds for good measure. Yes carbs can mean snickers, but I am trying to give him healthy carbs which mean whole grains (no instant porridge) fruits and vegetables. The least amount of processing the better, so I am trying to make my own soups and breads. OK, I will admit that I was not a domestic goddess by any stretch of the imagination. My house was always clean, but I did not enjoy cooking. Once when my sons spent the day at my sisters place, they came back and one asked excitedly "do you know where aunt Nickie gets her cookies from?" I guessed the local bakery, I got mine at Safeway. He said "no,,,,, she got them out of her oven!"

So I made cookies, because I felt like I had been neglecting them. I worked full time, and looked after the house, and a good chunk of the gardens, so my husband often cooked meals.

Well now that I am home full time, I figure that I will make this my job, and being the over achiever that I am, that means, baking bread and making homemade soups, and good unprocessed meals.
OK make that making multigrain bricks, and a huge mess when I make the soups. I swear that I have an electrical magnetic field in my body that kills yeast on contact. My mother and sisters look at me with such pity in their eyes at my lack of baking ability. But I will not give up! I actually managed a fairly decent multigrain bread that had sesame seed, sunflower seeds, whole rolled oats, and pumpkin seeds in it. It did raise above the pan 1 " and after you dipped it in the borscht that took me 3 ½ hours to make you could even chew it.
 
My answer to the high carbohydrate high calorie diet is ice cream, cheese, whole milk, whole-grain breads
And anything else I feel like eating. When I was diagnosed I was 183 pounds I am now over 200 and stable. But I'm a distal onset, Slow progression case. Still swallowing eating talking etc. just don't ask me to open a Ziploc bag
 
Both zoohouse and hjlindley mention weight gain. Is that muscle...? and I ask because I've dropped ~14 lbs in the last 6 months...
 
Greg, sadly no it's not muscle.

Your muscles will waste with ALS regardless of your diet. Instead they will waste in relation to how fast the nerve to that muscle is damaged.

Now, this is my understanding, not sure if it is completely accurate as I'm telling my own summary of the different things I've read, but if not someone better at explaining it will hopefully add.

As these muscles weaken it takes more and more energy to do the simplest of tasks. So a task such as walking from bedroom to kitchen used to use only a small amount of energy, as your legs weaken it takes more and more energy to make those wasting muscles obey your orders and hold your body up, until you can't even do it. Then just standing to transfer to a chair takes even more energy than it used to take to walk to the kitchen.

This means that as muscles are wasting, thereby reducing your body weight, on top of this you are burning more and more energy for every little task, even though you are doing less and less. So a good high carb/calorie diet allows your body to have lots and lots of fuel to burn for the 'simplest' of tasks.

If you don't do this, your body wastes faster as you have to burn something to get energy, you feel the fatigue more, and the theory is that you progress faster because you are really, literally, wearing yourself out.

This doesn't mean you won't progress, or you will get better eating this diet, but there is lots of evidence that you are likely to progress more slowly and have better energy for 'living' if you eat high carb/calorie, if you can put on weight and conserve your energy.

So PALS, please research this carefully and start immediately to get a great diet in place, even eating snickers whenever you need a lift, every bit is going to be needed.
 
>So PALS, please research this carefully and start immediately to get a great diet in place, even eating snickers whenever you need a lift, every bit is going to be needed.

Thanks, Tillie :) -- I have just [finally] gotten off of my pity pot after 5 weeks of not eating and started getting Sandy to liquidize protein, etc. and force it down. 440 cals in chocolate milk, 60 oz of veggie (mush) cut with V8, anything/everything.

I won't do a PEG, but won't starve yet either :).

Max
 
Other than my wish for pancakes, I usually eat brown rice, broccoli, sweet potatoes,cauliflower, pasta with olive oil, grain bread,apples, oranges, zucchini, chopped tomatoes,onions,Chinese (Napa) cabbage, dark chocolate and occasionally ice cream. Chicken,pork or beef& sometimes sausage with eggs. I have a good amount of energy, I feel pretty good considering, but I do conserve my energy.
 
Thank you, that's a clear explanation.
 
Max, this is also really important for your mental/emotional state of mind - it takes calories for your brain to function.

So if you PALS skimp on calories you feel more mentally/emotional fatigued and it becomes a bit of a cycle. The more you feel that fatigue the less you get enthused to get more calories in and round it goes.

Hopefully as you start to take in all these extra calories and vit/mins you will also find your self 'perking' up mentally and emotionally. Get a little enjoyment and 'life' out of life.
 
Hi, Tillie!

>Hopefully as you start to take in all these extra calories and vit/mins you will also find your self 'perking' up mentally and emotionally. Get a little enjoyment and 'life' out of life.

:) -- hope so. Got Sandy to put two tbls of Nutella and 2xtbls of peanut butter in this AM's smoothie -- should be over 600 cals!

I am going to double down this week in prep for the San Antonio show where I am going to shoot. I haven't done a shoot in months of my pity party. Probably have to use a wheelchair at the show, but who cares :).

I will post the shots on my Facebook, [email protected].

Thank you, again for the encouragement.

Max
 
we are getting a little off topic here but I have this view of 'fighting' ALS

My view is - understand the disease and 'go with it'. That isn't giving up. What I mean is exactly what you just said Max - you want to go to that shoot, wheelchair is needed and allows you to still do this safely and conserving energy. That, to me, is telling this disease that it just isn't ruining your whole life. Make sure you take extra calories that day - maybe have a pocketful of snickers?
 
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