"Don't Say"

Don't say you are thinking of me, see me in the real.

Don't say you will help, then leave me helpless.

Dont say you care, then act careless.

Don't say you will be there, so I have to think "where are you"?

Don't say you understand, you just cannot.

Don't say  YOU WILL, when you won't.

Just "DO" even if I did not ask you.

ALS Vent Decisions 4 seasons in one day

Respiratory stabilization is the key to surviving longer with ALS and huge decisions have to be made about your respiratory status as time go's on, your decision to vent/trachea or not will change the path of your ALS, but it is a decision you will have to face eventually. One day you will suddenly be unable to breath well, I liken it to 4 seasons in one day, everything will happen all at once and then you will have to decide and there is NO GOING BACK once you are vented.

Before your breathing is an issue please discuss your wishes with the people you love and have your wishes known in your DPA (durable power of attorney), after all you are talking about your survival and ALS is an individual situation in each case, just as each person with ALS is an individual.

Don ( at this stage ) had decided not to vent, I say at this stage because he could always change his mind, Now that he is under "hospice care"if he decided to vent he would be classified as having an extended life and if vented he would no longer receive "hospice care"that for the moment is allotted to him, even though ALS is a terminal illness hospice does NOT support vented patient's so your support would be halved.

Having said this there are many reasons why an ALS patients make such serious decisions, a patient who vents may be young and hoping a cure is just around the corner, perhaps one wants to see their children graduate from high school or they want to fight the fight until they cannot fight any more, RESPECT ALS patients wishes at all times no matter what they decide, it is really a big deal because ALS takes so much from a person.

"Take these broken wings, learn to fly again" "learn to live so free".