slicknscoot
Member
- Joined
- Sep 8, 2012
- Messages
- 10
- Reason
- CALS
- Diagnosis
- 09/2012
- Country
- US
- State
- Pa
- City
- Northumberland
My mother inlaw just received her Bipap and is refusing to get used to it. She keeps saying that it won't be long till she's going to pass on and feels that she doesn't want to use another equipment.
Her onset problem of drop foot began in May 2010. She was diagnosed Aug 2012. She is walking slowly with her walker. 9lbs of strength in her left hand and 24lbs in her right. Her lung capacity is currently at 42%. She is able to eat small things by mouth.. Toddler size meal but has to be really careful and it takes her about an hour to eat that. She is able to care for her self in means of personal hygiene, it just takes longer. She is almost slurring to the point where I can't understand her and I'm her 24 hr caretaker. She is getting a dynavox to help within the next week. She has a peg tube and states that she refuses to be put on a ventilator.
My question is this.... and I don't want to sound harsh but we are still new to this...
Does ALS leave you bed ridden before you die? Or do some people die before they are bedridden?
I used to think that she was in the end stages until I watched videos on youtube and think that she is in the early stages.
I keep telling her that her neabulizer, cough assist and suction machine and now her bipap is to make her more comfortable rather than to have her suffer through this ordeal.
Her onset problem of drop foot began in May 2010. She was diagnosed Aug 2012. She is walking slowly with her walker. 9lbs of strength in her left hand and 24lbs in her right. Her lung capacity is currently at 42%. She is able to eat small things by mouth.. Toddler size meal but has to be really careful and it takes her about an hour to eat that. She is able to care for her self in means of personal hygiene, it just takes longer. She is almost slurring to the point where I can't understand her and I'm her 24 hr caretaker. She is getting a dynavox to help within the next week. She has a peg tube and states that she refuses to be put on a ventilator.
My question is this.... and I don't want to sound harsh but we are still new to this...
Does ALS leave you bed ridden before you die? Or do some people die before they are bedridden?
I used to think that she was in the end stages until I watched videos on youtube and think that she is in the early stages.
I keep telling her that her neabulizer, cough assist and suction machine and now her bipap is to make her more comfortable rather than to have her suffer through this ordeal.