Mydad
Member
- Joined
- Apr 12, 2017
- Messages
- 26
- Reason
- Loved one DX
- Diagnosis
- 03/2017
- Country
- us
- State
- TX
- City
- ooooooo
Hi everyone,
My dad went to his 6 MONTH ALS clinic follow up apt last week, and my mom and him were given horrible news. He was unable to even register on the breathing test so they weren't able to see what his FVC percentage was. He is unable to speak now only my mom can understand him, arms are almost gone and legs are getting weaker. The neurologist told them that he probably only has 3 months left to live and it was time for Hospice to come in. We are very grateful that the Hospice agency the ALS clinic uses will allow him to keep his BIPAP and PEG tube. We are completely devastated by this. My mom told me that they talked that night and said they were not going to live like he only had a few months left and that no one knows how long he has and he didn't feel like his time was coming. He isn't on his BIPAP 24hrs yet, so I don't understand why he made this prediction? The ALS CLINIC here is absolutely wonderful. They gave them a loaner eyegaze until his comes and are going to give him a wheelchair also. He was just fitted for his own, but they are stopping that process due to what the Neurologist said. Has anyone been given this type of prognosis and was it based on his breathing?
Thanks!
My dad went to his 6 MONTH ALS clinic follow up apt last week, and my mom and him were given horrible news. He was unable to even register on the breathing test so they weren't able to see what his FVC percentage was. He is unable to speak now only my mom can understand him, arms are almost gone and legs are getting weaker. The neurologist told them that he probably only has 3 months left to live and it was time for Hospice to come in. We are very grateful that the Hospice agency the ALS clinic uses will allow him to keep his BIPAP and PEG tube. We are completely devastated by this. My mom told me that they talked that night and said they were not going to live like he only had a few months left and that no one knows how long he has and he didn't feel like his time was coming. He isn't on his BIPAP 24hrs yet, so I don't understand why he made this prediction? The ALS CLINIC here is absolutely wonderful. They gave them a loaner eyegaze until his comes and are going to give him a wheelchair also. He was just fitted for his own, but they are stopping that process due to what the Neurologist said. Has anyone been given this type of prognosis and was it based on his breathing?
Thanks!