Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
PEG feedings and nutrition are the single most important things a PALS can do.
It is extremely important to keep your weight up so getting, and using, a PEG before you loose too much weight is critical. Once weight is lost it does not come back in the right places. I lost 40 pounds before getting my PEG and 40 more in the following year.
I attribute most of the weight loss to the fact my immune system was working overtime fighting ALS. Also, I was having to work very hard to breathe so I was expending more energy than I could take in. After getting my tracheostomy and ventilator the excessive expending of energy stopped and I started gaining weight. Unfortunately it was all around my waist and I look pregnant! LOL
It is very important to follow the advice of the Dietitian/Nutritionist at the ALS Clinic.
They always want you to use formula of some sort. There are quite a few different formulas you can try if you are having trouble adjusting to a specific brand. This is the way to go, especially in the United States, as it is provided at no charge. In Canada we have to pay for it ourselves.
I tried a few and could not get used to any of them, they upset my stomach and I always felt nauseous. After much thought we decided to try blending up my wife’s food as my system was used to her cooking. This was met with a lot of resistance but we did it anyway and my system was Thankful! If you do this then it is best to do your feedings with a syringe, not a feeding bag. The bags tube may be too small and there is the chance it may clog. Also, this would be almost guaranteed if you use any other blender than a Vita-Mix.
We purchased a Vita-Mix blender - it will liquefy anything. It will easily liquefy a steak in seconds! We also make smoothies, soup and ice cream in it. They are expensive but bullet proof and worth every penny!
We have done hamburgers with fries and all the trimmings. Steaks, Taco’s and everything in between.
Here is a website that has some recipes that are great. Use your imagination, you can’t hurt this blender.
