bluemeanies
New member
- Joined
- Jul 17, 2021
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 07/2021
- Country
- US
- State
- PA
- City
- Folsom
Hello my wife has just been diagnosed with ALS.
Her symptoms unknowingly ALS started about two years ago maybe 1.5 years
Problems with walking, balance issues, tingling in ear sand soon after breathing issues. She is 68 years of age. Her wishes after six weeks in hospital for a diagnosis and two weeks in a poor nursing home of which I just about lived there b/c of bad care were to go home and be comfortable for whatever time she had left.
Her muscles are very weak in the lower extremities and weak in the upper extremities with a diagnosis of a poorly working diaphragm. We were told that the diaphragm is working less than optimal..less than 50%!
She is on a self breathing ventilator which she is on about 15 hours a day..progressing from 3-4 hours per day.
With are of this we still were not given any kind of time frame . We know NO ONE can give us an exact time, day, or hour however what would be a conservative guess? We want to make plans for the inevitable and clean house so to speak.
Does anyone have a thought on this question?
I am suspecting from what I have read that my wife’s case is advanced…WE agree that her time is limited and my wife feels she will not be here for the holidays.
We just celebrated our 49th anniversary..
Very hard to get through is and watch a loved one suffer.
thanks to all for just listening..
All comments are welcome,
b
Her symptoms unknowingly ALS started about two years ago maybe 1.5 years
Problems with walking, balance issues, tingling in ear sand soon after breathing issues. She is 68 years of age. Her wishes after six weeks in hospital for a diagnosis and two weeks in a poor nursing home of which I just about lived there b/c of bad care were to go home and be comfortable for whatever time she had left.
Her muscles are very weak in the lower extremities and weak in the upper extremities with a diagnosis of a poorly working diaphragm. We were told that the diaphragm is working less than optimal..less than 50%!
She is on a self breathing ventilator which she is on about 15 hours a day..progressing from 3-4 hours per day.
With are of this we still were not given any kind of time frame . We know NO ONE can give us an exact time, day, or hour however what would be a conservative guess? We want to make plans for the inevitable and clean house so to speak.
Does anyone have a thought on this question?
I am suspecting from what I have read that my wife’s case is advanced…WE agree that her time is limited and my wife feels she will not be here for the holidays.
We just celebrated our 49th anniversary..
Very hard to get through is and watch a loved one suffer.
thanks to all for just listening..
All comments are welcome,
b