tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
Two weeks ago I emailed and asked my ALS nurse to call me. When she did I told her that my headaches had returned and that doing even the smallest things left me out of breath and exhausted. I had been to the clinic two weeks prior to our phone call.
She recommended that we once again have my BiPap setting changed to try and help with the headaches and so we did - it has helped some. She also recommended that I set up and begin Hospice care.
As many of you may remember I do not take any medications and only use my BiPap at night. I do not use it during the day as I have been lead to believe it will extend my existence. I am fortunate in that my "version" of ALS was respiratory onset, so I still have use of my limbs and voice. My hope is that I pass before loosing these, though each day is making it look less likely as my hands and legs are rapidly failing.
None the less I was surprised to hear her suggest Hospice care at this point. Yes my FVC, MIP, MEP are all what they called critical, but I still get up and function each day. I make our meals, I work on remodeling our house, and try to plan vacations, etc...
I am wondering what Hospice can do for me? I will take morphine at the end but would not take it now as I want my head to be clear. So what can they do and should I take her advice?
She recommended that we once again have my BiPap setting changed to try and help with the headaches and so we did - it has helped some. She also recommended that I set up and begin Hospice care.
As many of you may remember I do not take any medications and only use my BiPap at night. I do not use it during the day as I have been lead to believe it will extend my existence. I am fortunate in that my "version" of ALS was respiratory onset, so I still have use of my limbs and voice. My hope is that I pass before loosing these, though each day is making it look less likely as my hands and legs are rapidly failing.
None the less I was surprised to hear her suggest Hospice care at this point. Yes my FVC, MIP, MEP are all what they called critical, but I still get up and function each day. I make our meals, I work on remodeling our house, and try to plan vacations, etc...
I am wondering what Hospice can do for me? I will take morphine at the end but would not take it now as I want my head to be clear. So what can they do and should I take her advice?