Panic Attacks

Besides pulse/ox they should be checking CO2 levels. This requires a blood draw but it's vital information as carbon dioxide buildup is a serious issue for PALS. I know Joel has some good info on his website about that. We kept a small pulse/ox reader for Glen, but mostly to check his heart rate, as I'm lousy at checking a pulse. As he grew weaker, his heart rate increased.

As far as going with your PALS to doc appointments.. if relaying information is not something your PALS is good at you really need to step in and insist that the docs listen to you. Yes with three docs you'd hope they pick up on things but they are not with your PALS on a day to day basisand really aren't going to be able to tell as well as you can when something has changed or might need further intervention.

Thanks everyone.....I'm heading off to Joel's website.....sounds like there is a wealth of information there.....very much appreciated Joel!.......Laurie xo

My husband's oxygen level is around 89. There is a breathing test which is called - negative something. That one is around 20. He refuses to use both bipap or oxygen. He can breathe fine, he told the nurse.

One night he had a panic attack lasting 5 hours. I have never experienced it and thought he was dying. I called hospice. The nurse came that morning and hinted about how to calm down panic attack. The social worker taught us some methods also.

I learn a lot reading from here and would tell the nurse devices I read about here, one being suction machine. She is very helpful and gets us those she is able to.

I contacted Als support when he needs speech devise and it is not something hospice can provide us with. My husband has been brave about not being able to eat. Unable to talk is getting to him. He cries daily, feeling miserable.

The personnel from Als asked me if he knows what he has. I told her - he knows the name but not what it is and he does not want to know what it is. I explain it to him and use this site - so he would not feel he is alone in it. I asked him several times if he wants to read this forum. He does not. I am looking forward to her visit. She sounds so nice over the phone.