Hello again,
I'm wondering how many have experienced this phenomenon of BiPap as life support in this disease? When my dad was diagnosed in 10/07 they had just begun using BiPap in the early stages of the disease...nightime use. The doctor said if it were a drug it would be considered a 'miracle drug' because of how it 'prolongs survival'. At the time I remember thinking (and I thought the same thing about the drugs that 'prolong survival') What's that survival like? What's being prolonged? Healthy full functioning or end stage suffering? Hope this makes sense.
Fast forward...my dad's disease progressed to where he can no longer walk and his breathing suffered to where he is 100% dependent on the BiPap...when it's off for a few seconds to change masks he's riddled with anxiety and yelling (his version) at my mom to hurry.
So essentially the BiPap is functioning as a vent without the invasiveness....The NP at the ALS clinic has told us that *eventually* the BiPap will be unable to help with his breathing 'problems'..that certain muscles will 'go' that will not be supported by the BiPap's method. He's been very dependent on this machine for maybe 8months? I don't know what his course would've been had we not been using it from the beginning or had we not used it at all.....
Is there anyone else experiencing this BiPap as 'life support' phenomenon? We have learned that even the BiPap companies are very unfamiliar with this...It took a very long time to figure out how to provide 'back up' energy to the machine should we have a power failure (the answer ended up being simple but no one really new the answer b/c no one had asked the question before!).
If your PALS is one with a true 'zest' to live each day to the fullest, and get the most out of each day left, I would say this BiPap *would* be a miracle. For my dad, however, I have to wonder......... He's basically been crippled by depression from diagnosis on....he barely has had a moment of enjoyment since, even when he was basically fully functional. (I so wish he had been misdiagnosed over and over until he was bedbound for this reason! strange, I know, but true.)
So I don't really know if I have a question but wondering about others' experiences or thoughts in this area?
Thank you for reading,
~Susan
I'm wondering how many have experienced this phenomenon of BiPap as life support in this disease? When my dad was diagnosed in 10/07 they had just begun using BiPap in the early stages of the disease...nightime use. The doctor said if it were a drug it would be considered a 'miracle drug' because of how it 'prolongs survival'. At the time I remember thinking (and I thought the same thing about the drugs that 'prolong survival') What's that survival like? What's being prolonged? Healthy full functioning or end stage suffering? Hope this makes sense.
Fast forward...my dad's disease progressed to where he can no longer walk and his breathing suffered to where he is 100% dependent on the BiPap...when it's off for a few seconds to change masks he's riddled with anxiety and yelling (his version) at my mom to hurry.
So essentially the BiPap is functioning as a vent without the invasiveness....The NP at the ALS clinic has told us that *eventually* the BiPap will be unable to help with his breathing 'problems'..that certain muscles will 'go' that will not be supported by the BiPap's method. He's been very dependent on this machine for maybe 8months? I don't know what his course would've been had we not been using it from the beginning or had we not used it at all.....
Is there anyone else experiencing this BiPap as 'life support' phenomenon? We have learned that even the BiPap companies are very unfamiliar with this...It took a very long time to figure out how to provide 'back up' energy to the machine should we have a power failure (the answer ended up being simple but no one really new the answer b/c no one had asked the question before!).
If your PALS is one with a true 'zest' to live each day to the fullest, and get the most out of each day left, I would say this BiPap *would* be a miracle. For my dad, however, I have to wonder......... He's basically been crippled by depression from diagnosis on....he barely has had a moment of enjoyment since, even when he was basically fully functional. (I so wish he had been misdiagnosed over and over until he was bedbound for this reason! strange, I know, but true.)
So I don't really know if I have a question but wondering about others' experiences or thoughts in this area?
Thank you for reading,
~Susan