paCO2 vs ALS FRS scoring limitations

[JohnHMich]

We were at the ALS Clinic on Wednesday and they scored my PALS at 15 on ALS FRS scale. She still breathes off the vent all day and most of the night. Her paCO2 is still normal off the vent. We are trying to plan another trip, so it is nice to see that we don't need to worry about her breathing yet. I see now how limiting the ALS FRS score is in terms of predicting quality of life. My PALS still gets around pretty well in her chair, can have a meal at a restaurant (although her arm gets tired sometimes), enjoyed the trip to Europe. A year ago, I would have thought a 15 meant hospice discussions. It is a strange disease...

 

[affected]

live every moment for sure!

 

[JohnHMich]

A quick postscript on this. I finally got a look at the doctors notes and he had scored my wife as being unable to sleep in the orthopnea section. The reason my wife can't sleep is her feet get cold, the mattress is uncomfortable and the vent leaks when she lies on her side. Not because she can't breathe effectively while lying down. We have fixed two of these and are working on the leaky mask. At any rate, that explains the 4 point difference in my score vs the doc's.