lgg
Active member
- Joined
- Mar 19, 2020
- Messages
- 39
- Reason
- CALS
- Diagnosis
- 11/2017
- Country
- US
- State
- TX
- City
- San Antonio
My PALS was diagnosed in November 2017. Fortunately, it progressed slowly, allowing me to gradually increase my level of care as needed. Use of his arms and hands were the first to go. While his legs were strong, his balance was not good. In February he fell for the last time because he would no longer try to walk. Since then the progression has sped up and I find myself ill prepared. His lung capacity has gone to 30%. We just got a ventilator, which has been helpful, but I worry. When he uses it at night, I worry he’ll need me and I won’t hear him. Because he can’t move his arms, he is unable to remove the mask if something goes wrong. I’m in the process of hiring someone to come in three nights a week primarily so I can sleep. I’m exhausted. Any advise or ideas would be welcomed. Thanks for listening. I’m awfully glad you’re here. Leslie