locked in

This is my first time posting. My Dad has ALS, he is on a ventilator, we have been home on hospice since September 2011. We used to have an ECU ( environmental control unit) for him that could control the tv, light, radio, bed and nurse call at the touch of a button. About two weeks ago, my dads...

Good Morning! I am just back from a visit with my PALS (my father-in-law). He is almost completely locked in now but his breathing has yet to be measureably impacted. I was talking with my mother-in-law and she said that he has had a couple of panic attacks where he believes that he cannot...

Sometimes new discoveries are not all that fun. My discovery yesterday was that I can no longer cut my own meat at a restraunt. Kinda a strange feeling to have to ask my hubby to cut my food because I have never had to before. But that fork kept flying and I litterally could not cut to the...

Hi, Haven't posted in awhile. Moved my brother to my state a few weeks ago. He was already diagonosed, and already in a wheelchair. He can only move his left hand a little (and uses the computer with it) and he can still speak and eat. He has been having increased trouble breathing in the...

Hi all. I don't post much, but I lurk and read quite a bit. Diagnosed in May 2007, my husband's condition has deteriorated to the point where "we" (aides during the day and me at night and on weekends) just could not manage it anymore. He has been "locked in" for 14 months, his breathing is...

I am fairly new to the forum being diagnosed 8/12/2010. I would love to hear some words of wisdom from those of you "ahead" of me on this ALS trip. What would you do different or perhaps keep the same after you were diagnosed (ex trips, conversations, purchases, etc). I am trying to maximize...

My PALS jaw often hurts when he is using the commode. The way we have him set up is he is in his sling, hooked up to his lift, and sitting up on the commode. He is locked in- all the way. So in order to hold his head up while he is sitting up, we have a strap that goes around the bottom of his...

I've posted a few times before and wanted to give u all an update on my mom. She has no movement at all anywhere and is reliant on a ventilator around the clock and a feeding tube through her nose (we had complications with the stomach one). She's been diagnosed since 1999 as her symptoms...

Hi everyone. Im new here, so I hope im posting in the right place. I am a caregiver. I wanted to go right to the source- you guys know whats what, so here it goes... First, i little backround My PALS was diagnosed 8 years ago. Ive been taking care of him for almost 3. He has no movement...

Hi all, My dad has ALS, and is in what I've just seen referred to as the "locked in" stage. He is coming to stay with my family for 8 days while his wife (full-time caregiver) heads out of town. I think he uses the C 5000 wheelchair (? I'm trying to remember the logo on the side) Anyway its...