ALR269
New member
- Joined
- Dec 28, 2008
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- NY
- City
- Schenectady
Hi there, please forgive me for such a blunt question coming from someone who has just found this board, but it is the one troubling my family the most. My Mother In Law is 62 with advanced PBP. She has few symptoms of typical ALS progression. As of now she has a feeding tube, trach, and is currently in the hospital after several choking episodes (pre-trach). They recently released her from ICU and are hopefully getting ready to release her to home for hospice care.
The biggest question on everyone's minds in how much time she probably has left. We really aren't sure what comes next, and even the doctors won't (can't) give us any information. She is usually stable for a couple of weeks, and then has a big decline. Does anyone have any experience on what usually comes after this? Please don't worry about being truthful, even if it seems harsh. We just want to be prepared as possible and it's so hard to do that with this disease. Thanks in advance...
The biggest question on everyone's minds in how much time she probably has left. We really aren't sure what comes next, and even the doctors won't (can't) give us any information. She is usually stable for a couple of weeks, and then has a big decline. Does anyone have any experience on what usually comes after this? Please don't worry about being truthful, even if it seems harsh. We just want to be prepared as possible and it's so hard to do that with this disease. Thanks in advance...