MVFinVA
Distinguished member
- Joined
- Sep 5, 2017
- Messages
- 116
- Reason
- Lost a loved one
- Diagnosis
- 05/2017
- Country
- US
- State
- VA
- City
- S
My PALS was diagnosed in May 2017. He has ALS/FTD, feeding tube placed in May with continuous feed, Bipap starting in May at night, is all upper body and can still walk but will assistance. When he received the bipap he immediately adapted to it and slept twelve hours the first night. In fact he fell asleep ten minutes after it was put on. He now asks for it during the day, usually the late afternoon. During the last month he has gotten VERY restless when he goes to bed at 10pm. He says he is tired, but he moves his legs around a lot, asks to get up to go to the bathroom at least once an hour and doesn't settle down into a real sleep until between 1 and 2 am. I take him to the bathroom at 7am, adjust his bed to an angle and hook him up to the feeding pump. He immediately falls into a deep sleep and sleeps until about 11:30-noon.. He may ask to go to the bathroom about 10am. It doesn't matter if I get him up earlier in the day. Saturday I got him up at 9am because our house was being re-roofed, noisy! He was still very restless that night.
I am wondering if the bipap settings need to be adjusted. He can't tell me how it feels to him because of the FTD. I have noticed that after a trip to the bathroom his breathing is very rapid when he is back on the bipap. We have a clinic visit in two weeks and they will test his breathing, but I was wondering if there is anything I should ask. We take the bipap to every appointment and they download the data and adjust the machine. So far his breathing was been the same since May and there have been no adjustments. They have been very happy with the data so far.
Or could there be something else causing the restlessness? Any advice would be appreciated.
Mary
I am wondering if the bipap settings need to be adjusted. He can't tell me how it feels to him because of the FTD. I have noticed that after a trip to the bathroom his breathing is very rapid when he is back on the bipap. We have a clinic visit in two weeks and they will test his breathing, but I was wondering if there is anything I should ask. We take the bipap to every appointment and they download the data and adjust the machine. So far his breathing was been the same since May and there have been no adjustments. They have been very happy with the data so far.
Or could there be something else causing the restlessness? Any advice would be appreciated.
Mary