Hreal85
Member
- Joined
- Jan 19, 2021
- Messages
- 10
- Reason
- CALS
- Diagnosis
- 01/2021
- Country
- US
- State
- MA
- City
- Weymouth
Hi
My dad just had his check in appointment with his neurologist today. His fatigue has been much worse over the last month and so has his appetite and he has lost weight. He has been complaining about feeling short of breath during the night but fine during the day. He was diagnosed this past January with MND only his right hand being effected but I’ve noticed him hunching his back more lately. His FVC was 82% in January but today was 50%. They are gonna start him on BiPap at night. And I’m hopeful that it will help with his fatigue and maybe even his appetite. I guess I’m surprised that he is already having breathing issues. I was hoping that the disease would progress in his limbs first (what a sad thing to hope for but this disease is horrible like that) before it effected his breathing. My dad has mentioned not wanting to be on a ventilator and I’m worried because now we are going on BiPap at night…how much longer until he has to do BiPap 24/7. He is still working full time, however the fatigue has made it difficult for him, he will tell you that he is thankful that he has a desk job and can sit down most of the day. I’m concerned he is pushing himself too much but at the same time he loves his job and I feel like if I tell him he should think about retiring and going on disability he will just eventually withdraw and become depressed.
I know it’s variable for each person but I guess what I’m looking is to see how long people who started on BiPap overnight maintained it for before they had to increase it to night and during the day?
My dad just had his check in appointment with his neurologist today. His fatigue has been much worse over the last month and so has his appetite and he has lost weight. He has been complaining about feeling short of breath during the night but fine during the day. He was diagnosed this past January with MND only his right hand being effected but I’ve noticed him hunching his back more lately. His FVC was 82% in January but today was 50%. They are gonna start him on BiPap at night. And I’m hopeful that it will help with his fatigue and maybe even his appetite. I guess I’m surprised that he is already having breathing issues. I was hoping that the disease would progress in his limbs first (what a sad thing to hope for but this disease is horrible like that) before it effected his breathing. My dad has mentioned not wanting to be on a ventilator and I’m worried because now we are going on BiPap at night…how much longer until he has to do BiPap 24/7. He is still working full time, however the fatigue has made it difficult for him, he will tell you that he is thankful that he has a desk job and can sit down most of the day. I’m concerned he is pushing himself too much but at the same time he loves his job and I feel like if I tell him he should think about retiring and going on disability he will just eventually withdraw and become depressed.
I know it’s variable for each person but I guess what I’m looking is to see how long people who started on BiPap overnight maintained it for before they had to increase it to night and during the day?