GraceD
New member
- Joined
- Jul 29, 2019
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 05/2017
- Country
- US
- State
- CT
- City
- Fairfield
Hi everyone!
I’m new here, and joined because I have some questions about my mom’s progression. I am a college student in the uk, and am only back in the us during breaks. My mom has progressed very rapidly while I was at school, and I am wondering how much time we realistically have left.
She can move her toes and her head a little, though is rapidly losing the ability to keep her head up. Sometimes she can move an arm or a leg an inch or two but it takes a lot of effort. She is on something similar to a cpap machine every night. Her oxygen levels are in the mid-eighties during the day, but lung assessments in her power chair say she is below half lung function. She recently started taking a calorie supplement through her feeding tube, eats very little, and chokes on most of her meals. I know she needs more professional care than she is currently receiving, but my father refuses to pay for it, so I fear she may be getting worse from lack of adequate help. My mom has been voicing her fear over leaving my sister and I alone with our abusive father much more frequently, which makes me think she too is concerned about her time left.
I am worried we are nearing the end, and was wondering if anyone with a similar progression (we are just over two years in) could offer advice. Thanks in advance!
I’m new here, and joined because I have some questions about my mom’s progression. I am a college student in the uk, and am only back in the us during breaks. My mom has progressed very rapidly while I was at school, and I am wondering how much time we realistically have left.
She can move her toes and her head a little, though is rapidly losing the ability to keep her head up. Sometimes she can move an arm or a leg an inch or two but it takes a lot of effort. She is on something similar to a cpap machine every night. Her oxygen levels are in the mid-eighties during the day, but lung assessments in her power chair say she is below half lung function. She recently started taking a calorie supplement through her feeding tube, eats very little, and chokes on most of her meals. I know she needs more professional care than she is currently receiving, but my father refuses to pay for it, so I fear she may be getting worse from lack of adequate help. My mom has been voicing her fear over leaving my sister and I alone with our abusive father much more frequently, which makes me think she too is concerned about her time left.
I am worried we are nearing the end, and was wondering if anyone with a similar progression (we are just over two years in) could offer advice. Thanks in advance!