My Dad

[Al]

Not all ALS patients have bulbar symptoms and the choking ,swallowing problems. Your father will probably get to the point where he can not swallow without choking and will lose weight because he is not getting enough to eat. The problem with waiting too long to get the tube is he may be weak from lack of nourishment as well as he may have breathing issues by then that make the operation more dangerous. Don't worry about the questions. Ask what you need to know. Use the search feature above as well. Type in the key words you are looking for. There are a lot of topics there.
AL.

 

[joelc]

A lot of good advice has already been given, but I just wanted to add my 2 cents worth.

I cannot encourage everyone enough to get a feeding tube long before it becomes a complete necessity. The earlier the better as it gives time to adjust to it, use it and get used to having it. It gives incredible "peace of mind" knowing you have it if you need to use it. The procedure to get it installed is not really a big deal at all if done early. I fought with myself about getting one but, with the encouragement of family, decided to do it early and am glad I did. It took a few weeks to heal so best to do it when you are stronger. It honestly was not a big deal.

Using it saves choking on food and risking aspiring some, which could lead to pnemonia which IS a big deal!

So, it vastly improves "quality of life" and DOES extend a persons lifespan. Don't be afraid to do it as it does make living a lot more comfortable.

God Bless

 

[quadbliss]

Hi Phil,

There is one thing I don't think has been mentioned yet about getting a PEG early. Due to the nature of ALS, if you begin to lose weight because of malnutrition, and you lose any muscle, you are not likely to regrow that muscle. It is gone forever.

Mike