grp_believes_in_God
Member
- Joined
- Mar 16, 2006
- Messages
- 24
I just wanted to get perspective from caregivers who have seen their patient suffering from ALS for very long time (several years). My dad is suffering for 2 years now and have been is close to total paralysis for last 6 months. Vent is only keeping his breathing going. I guess he has some control over his breathing muscles, because the vent is supposed to be in assist mode i.e. he "initiates" the breath. There is not much movement other then some head/neck movement and eye movement and facial muscles which he uses mostly to grimace (unfrtunately, there is little for him to smile). I see he has difficulty yawning, perhaps because the jaw muscles aren't what they used to be.
My question is, how much worse can it get ? Can eye movement / head movement cease ? Has anyone been in that situation who can share their experience ?
Thanks
grp
My question is, how much worse can it get ? Can eye movement / head movement cease ? Has anyone been in that situation who can share their experience ?
Thanks
grp