Recent content by KarstBoy

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.

Doesn't help, already tried that. Right now she is pretty restricted as to position due to really bad problems with mucus buildup in her throat. She now sleeps with her upper body at a 60 degree angle to horizontal. This seems to cut down on the to need for throat suctioning in the middle of...

Does anyone on this board know of a specific care facility in the Ft. Worth/Dallas area that takes ALS patients? My PALS is wanting to check into a long term facility (6 mos or however long necessary). And before it is stated, yes I know that in general PALS won't get the same level of care...

Has anyone encountered bad leg pain while in bed? My PALS has been going through this. The pain seems to be increasing with time. When this all started, Tylenol would take care of it but it is practically useless now. I've also given her a muscle relaxer to no effect. NOTE: All limbs are either...

Never mind. Finally got it to reply & post.

Tillie, I tried to answer your conversation question and it would not let me reply. Here is the error message I got: Oops! We ran into some problems. Your content can not be submitted. This is likely because your content is spam-like or contains inappropriate elements. Please change your...