ALS diet, nutrition, supplements

[2siblingsALS]

What have you been told to eat or take? I have heard of the Deana Protocal.
I had my first visit to the ALS Clinic at the University of South Florida last Friday. The dietitian didn't give me any information on what to eat or not eat, etc.

 

[Graybeard]

If you're losing weight, eat all you can. I live on six cans of Boost+ a day thru the peg tube.

 

[cheerleader]

As long as you are able to eat, load up on all the fatty foods you can (ice cream, butter, etcc.). The things you had to avoid in your "other life" are now the things that will help you.. Maintaining weight is the best thing you can do. (Of course, nutrition is important, too - but, this free pass on foods you might have avoided is one of the only perks a Als gives you!)

 

[gooseberry]

My husband says fruits and vegetables take a lot of energy to eat. He does occasionally but I give him fiber one cookies which he would rather eat. Soft, chewy and yummy. He has smoothies and basically anything he wants to eat. They didn't recommend anything for him either. Not much help. We have noticed that even though he was diagnosed with diabetes, type 2 4 years ago, since he has had als, his a1c has steadily dropped no matter what he eats. So, he gets anything he feels like eating.

 

[Nikki J]

Ditto keep your weight up. There is research that a high calorie highcarbohydrate diet improved survival. Small study at Mass General

 

[gooseberry]

When Steve got his peg tube , we were told if he was tired and didn't feel like eating, give a tube feed. If he only ate half a meal, give a tube feed. Basically he has to have 2500 cal a day to maintain weight even though he sleeps 12 hrs a day and sits on the couch mostly. His calories are supposed to be divided into 3 meals and 3 snacks. But, you have to be a little careful about timing of food because of the fat interacting with the riluzole.

 

[andycap]

I wish my husband would get a peg tube eating takes a lot of energy and he is constantly biting his tongue or his gums,so hard to watch.ALS social worker came out to the house Saturday and was telling him about it and saying he may very well choke to death
without it,he still says he dose not want anything to prolong this horrble desease and I get that but it dose not have to be this
hard.He is now speaking through a IPAD.This is so very sad and I know everyone on this forum is aware of how sad it is.
My heart goes out to all of you!


Andrea

 

[hjlindley]

I can still eat so calories .Are not a problem. If you want some objective information about the Deanna protocol check ALSUntangled.com - Home. It is run by Dr. Richard Bedlack my ALS neurologist at Duke.

 

[gooseberry]

my 12 year old son has had a lot to do with the choices my husband has made

 

[Graybeard]

The peg will allow him to decline without the choking, etc. I have no events like that. Half dose of Nuedexta has helped with aspirating.