Breathing difficulty questions

My mom's breathing is the only thing that hasn't gone yet (save for some slight head/eye movement).

My question is -- when your PALS breathing started to be affected, was it gradual? Were they fine one day and having trouble the next? I know everyone is different, but I'm looking for people's experiences.

Mine was like everything else, crept up on me slowly. Found it harder and harder to breathe lying flat. On side worked until I got a Bipap.

AL.

Gradual, over a period of one year. FVC went down from 100 to 80, to 60 percent etc., about 5 percent per month. But no breathing difficulty as such until it got under 60 per cent. Dani

I noticed the breathing shallow but that became his "normal". Then one day he kinda sounded and felt phlemy - like a cold coming on except no one he came into contact with had been sick and he hadn't been anywhere except outside. Got "better", came back, really started cough assist more often, seemed to help, middle of the night cough assist and it helped. Wanted to go outside to catch breath and took more ativan. sounding very phlemy with little success using the cough assist, or nebulizer. I told the nurse it was "the next thing" but she thought is was possibly a cold. Doctor agreed with me. She gave me morphine to use if requested. Once he started morphine, it was 4 days. Total time was about 3 weeks (start to finish of stated breathing symptoms)- no bipap ever used, oxygen not tolerated.

My husband's FVC went down dramatically after the pulmonary embolism. His level was 80% in August and went to 38% by November. He now uses his bi-pap with humidifier at night now. He's felt better during the last two days that he's felt in months. BUT he was in the hospital for a total of 14 days during the fall.

It was gradual with us. Measuring not so frequent here but it showed itself by increased drowsiness and headaches as the co2 was building up. Used a bipap very successfully to blow off the co2 until a further stage of weakness occurred with the muscles unable to take in enough o2 even with bipap. It followed the same pattern we'd experienced with the other muscle areas -started with a little weakness and gradually grew until there was no function.

Is there something I can get to measure her breathing? Right now the hospice nurse says her lungs are clear, she won't use the cough assist or the bipap, but I'd like to know her FVC number....is there anything I can get that will do that?

Yes, spirometer. You can buy one online. We did. You can also access info how to convert numbers your get in readings to percantages.

Spirometer will work unless your mom is bulbar onset or has significant bulbar involvement in which case she probably won't be able to get enough lip seal to take an accurate measurement.