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One year and three months from diagnosis... she died today. God I hate this effing disease!!!!!!!!!!

ALS Texas and ALS Association. The ALS Association link is especially good. As a caregiver struggling with burnout myself, I can relate: http://web.alsa.org/site/PageNavigator/Symptoms_of_Caregiver_Burnout.html

Could use some experience based guidance. My PALS, who is only 1 year & 2 months out from diagnosis, is beginning to have periods of difficult breathing which is making her a bit anxious. I'm wondering if it is time to call in hospice help or palliative care (?). She indicates that it is not...

Symptoms of caregiver burnout. There can also be associated compassion fatigue:

Ginger, what you may be experiencing is a caregiver in the throes of burnout.

Yes, she's got a good hospital bed but in order to keep from choking, she has to sleep sitting up (60 degrees from horizontal). Even with the bed like that, she can still on occasion become overwhelmed by saliva &/or mucus (but not near as much as laying horizontal). In her wheelchair though...

How many of you PALS sleep in your wheelchair? I ask this because it has become very difficult for my wife to sleep in bed because of saliva and mucus buildup causing serious breathing problems. She very seldom has a major problem while in the wheelchair though. Thinking if it gets too bad...

I've already screened this Medicare list for the ones in the Ft. Worth area and came up with nothing. Have yet to look at the Dallas places. I'd prefer Ft. Worth but may look into Dallas later.

Thanks Kim. Sounds like the culprit. My pals also complained about her right arm being painful and I had to place a small pillow beneath it.