Ventilation "The Decision Making Process"

[@applejellypucci]

Even with a ventilator, complete muscular atrophy is inevitable with ALS if pneumonia doesn't kill you first. You can still choke on your own saliva which can be fatal. You can't scratch your nose if it itches, you can't be left alone, not even for a minute. There is such thing as outliving quality of life, even with the help of a breathing machine. That is a personal choice, and when the time comes no one should be lambasted for their decision to vent or not to vent.

[@atheistmommy3710]

that's what I firmly believe in, it's not only patients decision to go on ventilator, it also has to be family's decision. Because doctor puts you on ventilator, and then what? You on your own? No, family takes care of you at home. Unless you have enough money to hire somebody or go to nursing home.

[@4dchessplayer516]

It really depends on the progression of the disease, and with ALS the cure could be right around the next corner, so holding on to it is one of those things that one can hope for

[@kathleenwinser4033]

I would not use ventilation at all. I am sorry but no way. That would not be for me.

[@wjpeace]

Why would you state this? The point was life on vent can be rich and rewarding. I know many vent dependent quads who lead great lives.

[@kathleenwinser4033]

wj peace I watched my uncle die from this disease. There is no cure and even on the vent the disease progresses and you eventually become what they call boxed in and well that is just not for me. I have nothing against anyone else if they want to be on the vent. I just would not want to live like that.

[@wjpeace]

It is easy to say "I have nothing against anyone else if they want to be on a vent". But you are saying that in your estimation that sort of life has no value. We do not live or die in a social vacuum.

[@kathleenwinser4033]

wj peace no I did not say that. WJ I am going to die myself unfortunately. No I don't have ALS. I have serious heart problems and well it is what it is. Maybe for some they see a value in being on a vent. Do I not have the right to say that I personally do not desire to be on a vent? I am in no ways judging anyone. Please don't take it the wrong way.

[@wjpeace]

I disagree. As a man with a disability I am often told "I would rather be dead than disabled". It is hard not to take that personally. In the same way a person living with a vent can find your comment threatening and judgmental.Respectfully.