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mayaB

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Friend was DX
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Montreal
Hello All,

My friend who has ALS is telling me that he is really tired of his liquid diet and basically starving..

ANY SUGGESTIONS, as I know nothing about all this it is hard for me to listen to him say these things.

Is the peg not a feeding tube and does it have to be liquid, I am told that Carbs are really good in this type of situation, is that true?
 
The PEG is a feeding tube. I have one and I use it about every day. I use Jevity, which is a liquid diet that has a lot of vitamins and minerals in it. They want me to get about 1700 calories each day, but I am not doing it yet. I am still losing weight. You have to MAKE yourself do it, at least I do. Right now, I can still eat a bit. But, I know I am going to have to go ALL OUT with the PEG pretty soon.

Encourage him to talk to his dietician and see what else he can do. It all has to be liquid. But all carbs is not good. He needs protein and minerals too.

that is my 2cents....
chefdeborah
 
Thank you?
I really appreciate that, he is at the point that he can not eat anymore, his peg is the only way.
 
If you want truly high power formula get some Nestle Resource 2.0, 480 calories and 20g of protein in an 8oz box. It makes it a lot easier to get the calories you need without the bulk of less concentrated formulas. Deborah, you can get 1920 calories with four boxes, I do 5 boxes a day and am holding my weight steady. Here are a couple of links, the first is for the Nestle products website and the second is for the Resource 2.0 page
Health Products - Nutritionally Complete Drink - Specialized Medical Nutrition
Resource 2.0 - High-Protein Balanced Drink - Nutritional Beverage - Calorically Dense, High Nitrogen, Complete Liquid Formula

It is not cheap stuff but it is good and they offer free shipping in the US.
 
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Barry, I get mine free, so far. Jevity is what I am on. If they can get the large bore bags right, I am on a roll. Except it give me a headache, I think. I looked online for the side effects and naturally, headache is not one of the side effects. Always me!

I wonder if I am developing diabetes. I am going to start checking my blood sugar several times a day. I am hypoglycemic and that is a precursor to diabetes. My father died with diabetes and my brother has it. They told me to keep a check on it. I will mention it at clinic on Thursday.

deborah
 
The PEG is a feeding tube. I have one and I use it about every day. I use Jevity, which is a liquid diet that has a lot of vitamins and minerals in it. They want me to get about 1700 calories each day, but I am not doing it yet. I am still losing weight. You have to MAKE yourself do it, at least I do. Right now, I can still eat a bit. But, I know I am going to have to go ALL OUT with the PEG pretty soon.

Encourage him to talk to his dietician and see what else he can do. It all has to be liquid. But all carbs is not good. He needs protein and minerals too.

that is my 2cents....
chefdeborah

Deb, If you are using the peg only for feeding, 1700 calories is not near enough. You need well over 2000 a day. I have been down that road. I lost 70 lbs, just didn't realize I needed so much of it.
 
Thank you all so much for your info. It's hard since he has pretty much given up on everything, I am trying to give him hope but not succeeding.. I know there is no miracle, but if I can help him in any way I would like to.

I want to see him in person but he still has not said yes yet. Since you are all in this and living it, what can I do to let him see me. I have a feeling that if I can see him face to face he may want to fight more and not give up just yet.
 
I agree with chefdeborah a dietician can do tests to find out the nutritional amounts needed for the individual we also have my wife on jevity as prescribed by the dietician and she has maintained weight since the initial peg placement which has been a year and half now. I believe that because the nutritional balance is so delicate with ALS patients it must be approached methodically and every individual is different, this being then reason to definatly consult with the pros.
Sincerely Paul And beth
 
if you have the veggi blender i believe you can also use real food ...right guys ?
 
If you use a Vita-Mix it will make any food liquid enough to put through a PEG.
 
thanks joel had wrong name
 
yeah i believe if you liquify food enough it doesnt matter what it is, it will go through a tube. But I also believe that every body metabolizes a little different we all have different kidneys livers intestines and different chemistries going on, and when it comes to ALS patients like my wife , i think being accurate in making sure she is getting the right balance in nutrition everyday has been instrumental in keeping her alive this long.
 
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