- Joined
- Jul 25, 2015
- Messages
- 1,606
- Reason
- CALS
- Diagnosis
- 07/2015
- Country
- US
- State
- tx
- City
- Dallas
Steve has been having problems the past few days with his breathing. He says he feels like he cant catch his breath. He uses the Trilogy every night for at least 7- 8 hours. He does very little during the day and most of the day just heads straight for the couch. He only gets up for bathroom breaks.
He is still walking with a cane, talking and generally doing ok but he has trouble catching his breath. He says it feels like he can not breathe deep enough. Mind you he has not got a peg yet and basically he does not feel like its time.
If he is not bulbar onset I wonder why his breathing seems to be declining faster than his body is. I also know he really fears the loss of breathing and has stated that he knows his breathing will be the end of him. He is very pale but is not losing any weight right now. I am confused as what to think or do. I also believe that because he fears not being able to breathe...that its making him think its worse than it actually is.
He does not have clinic again until late October. Should I make an appointment with his doctor? How do we know if something is going on? I am scared that we are not doing what we should be and that he will not be able to get a peg because he has waited to long.
I know he does not want to go through the battle of trying to breathe and made it clear when diagnosed that he could not deal with not being able to breathe. I also know that he doesn't want to talk about any of this. How do I figure out what we should be doing and make him understand that he just wont stop breathing this quick? I hate that we are not better prepared or that we know when something is seriously wrong.
Does anyone have any suggestions?
He is still walking with a cane, talking and generally doing ok but he has trouble catching his breath. He says it feels like he can not breathe deep enough. Mind you he has not got a peg yet and basically he does not feel like its time.
If he is not bulbar onset I wonder why his breathing seems to be declining faster than his body is. I also know he really fears the loss of breathing and has stated that he knows his breathing will be the end of him. He is very pale but is not losing any weight right now. I am confused as what to think or do. I also believe that because he fears not being able to breathe...that its making him think its worse than it actually is.
He does not have clinic again until late October. Should I make an appointment with his doctor? How do we know if something is going on? I am scared that we are not doing what we should be and that he will not be able to get a peg because he has waited to long.
I know he does not want to go through the battle of trying to breathe and made it clear when diagnosed that he could not deal with not being able to breathe. I also know that he doesn't want to talk about any of this. How do I figure out what we should be doing and make him understand that he just wont stop breathing this quick? I hate that we are not better prepared or that we know when something is seriously wrong.
Does anyone have any suggestions?