I have been diagnosed with ALS for 2.5 years and I am 73 years old

[PetacALS]

I am scared as I know this is the last part of it. I currently am able to use my hands and arms for my wheel chair. I can eat ok (as i am getting feeding tube in next month or so just in case), and my speech has not been effected. However, I know I am at the point where my breathing is becoming an hassle. I use a bi-pap machine at night, it helps, a little. I am just scared. Maybe I have a year to go with the blessing of God, as I know with my age, I can decline quickly and in a hurry. I am just scared. Why does ALS have to be so bad?

 

[AfraidButNotAlone]

God Bless!

Stay strong

 

[johnskip]

Dont be scared Petac God is right there with you

 

[MaxEidswick]

>Dont be scared Petac God is right there with you

and so are we ... I think you sound great and there's nothing wrong with being scared -- or angry or bitter or ...

IIWII ("It Is What It Is!") ... and you will deal with it as it comes I am sure. fwiw, I have had a few of those days recently as I have battled pneumonia!

Kind regards,


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Max - Tuesday, August 26, 2014 10:30:28 AM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[Schmidhogan]

If you're two and a half years into it and still have the functioning that you do I predict you have at least that much time left. The tummy tube might help. I hope to get one soon. Alex

 

[ECpara]

Having that PEG tube put in now will surely help. It's so important to keep your weight up! And keep up the bi-pap! Both supposedly help slow progression. Lean on God, He is there through this never ending storm.

 

[frankb]

Welcome to the forum. You will find a wealth of knowledge here, just for asking. No question is to small and you will find forum members who are unbelievably helpful with their knowledge and their time. God bless you in this journey.

 

[Barbie]

Of course you are scared, but keep telling yourself that you don't really know how much time you have. sounds like you have good function, and your breathing must not be too bad or they would not be putting in the peg. doesn't sound like the end at all. But you are right--things can change in a hurry. shoot, you could have a heart attack before the ALS gets you! So try to focus on each day you do have and not on the end.

Welcome to the forum and you will get a lot of support here from other pals!