janicebuf
Active member
- Joined
- Jul 6, 2005
- Messages
- 36
- Reason
- Loved one DX
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- east amherst
Hi All! So, so glad that you are all here. I know I don't post alot but you have all been wonderful...Some may remember, my brother age 46 was diagnosed several months ago with Familial ALS. Long story very, very short (could be very, very, long), his weight dropped from 155 to 107lbs in 2 months and he literally almost starved to death. Anyway, after PEG tube, respitory distress from bolus feeding along with aspiration pnemonia, and finally a trach, he is on the road to recovery. He has the trach for suctioning as his breathing is ok. Anyone here have any vent or trach info they can pass on? Also, do any of you have an adjustable bed? I don't mean a hospital one but more of a craftmatic or something like that? We are looking for one for home and don't know which way to turn as this has all happened so quickly!
I just got back from Florida and when I visited him last night he was just laying there, I told him that he can't just stare at his monitors all day and got him up(with the help of nurses) and got him in a chair, etc...I think he doesn't know what to do with himself at this point. I told him that even though he can't get on his ice skates and coach his hockey team, he can still 'coach' from the sidelines, etc...I mean he won't even look at TV and I really think it's from not knowing what to do with himself. I made his wife bring up the bills and all of his mail and told her that no matter what he says, make him 'have a say' in the daily activities at home, this will give him a purpose...Any comments?
Thanks!
Janice
I just got back from Florida and when I visited him last night he was just laying there, I told him that he can't just stare at his monitors all day and got him up(with the help of nurses) and got him in a chair, etc...I think he doesn't know what to do with himself at this point. I told him that even though he can't get on his ice skates and coach his hockey team, he can still 'coach' from the sidelines, etc...I mean he won't even look at TV and I really think it's from not knowing what to do with himself. I made his wife bring up the bills and all of his mail and told her that no matter what he says, make him 'have a say' in the daily activities at home, this will give him a purpose...Any comments?
Thanks!
Janice