Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

Nutrition and ALS are inseparable terms.

 

If you loose too much weight there is almost no way to get it back. If you are able to start gaining, then it ends up where you don’t want it - around your middle!

 

This happened to me and now I look 7 months pregnant. LOL

 

I personally believe that proper nutrition and maintaining your weight are the single most important things you can do to slow the progress of this horrible disease.

 

It is all too easy to start losing weight with ALS. Our immune systems are working overtime and consume calories. Then our taste for food is compromised (at least mine was) and we don’t want to eat, then we start having trouble swallowing and can’t eat. All these factors contribute to weight loss.

 

I lost a total of 80 pounds in a little over 1.5 years. 40 pounds before getting my PEG and 40 pounds after. I then realized it was unhealthy to have this happen and tried to take steps to reverse the trend. I wasn’t successful until I got my trache and vent, that managed to correct this problem. But the weight only accumulated around my waist.

 

If you are loosing weight it is very important to stop that trend and increase your calorie intake. If you can’t eat enough to control the downhill slide then start drinking Ensure or Carnation Instant Breakfast or some similar product.

 

The Dietician at the ALS Centre is an invaluable resource for this and can recommend a product and guide you as you seek to maintain your weight.

 

If you are starting to choke on food and/or drink then please consider getting a PEG (feeding tube). Get it early before you lose too much valuable weight. Too many PALS have waited too long and then had to get one when they were in a weakened state and had problems. It is a simple thing when you are healthy and it takes immense stress off you and your caregiver. Life is easy again.

 

Remember, just because you have a PEG does not mean you have to use it, but it will be there for when you really need it.

 

 

 

 

PEG if necessary and get it early