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My husband was not able to bounce back from the 2nd bout of pneumonia and he died peacefully at home the evening of 10-8-10. I was with him and his mother was also here. He had labored breathing and had been experiencing pain in neck, shoulders & chest. He was on an assortment of meds to help...

Last month my husband came down with pneumonia, and was so much better after just the 1st two days of antibiotics. He really bounced back afterwards and seemed better than he had in a couple of months. He aspirated again over the weekend and has pneumonia again. Started antibiotics Monday...

Dave is still not sleeping. He requires turning every 45 min or so. Between 10:30 pm and 7:30 am I am up at least 10 times during the night turning him to and fro. On his side, his shoulder gets sore (the muscles are totally atrophied in shoulders). On his back, saliva & mucus run down his...

Hi, We have an Atmos Air 9000 with Self Ajusting Technology bed on loan from ALS Association and I have no idea how it works. It has an electric pump that pumps it up, and it is supposed to be "self adjusting" but how the heck does it work? Do I need to keep the pump running? Or do I pump...

OK, we are to the point where frequent transfers to commode are just not possible, so hubby is trying condom catheter. I have some specific questions (stop reading now if you are offended by frank discussion of the subject.) Some of these questions might seem stupid, but I really don't know...

Hi All, It's been a long time since I have been on the forum. Where to start? I was laid off, then found an internal transfer at my company before my final day, so was NOT laid off. I started the new job the last monday in Oct. The job is not a great fit, they combined 2 people's jobs and gave...

Hi All, I know that the costs vary, depending on where you live, but can you please let me know: a) How much you pay per hour for in-home NON-nursing care? b) Where you are located? City, State or Country We need help and insurance pays nothing, so I am trying to get a handle on budget...

Oy, I don't even know where to start. My husband has bulbar onset ALS. He has a PEG Tube that he cannot manage on his own anymore due to hand and arm weakness. I dress and shower, him etc. He communicates via iPhone plus an application that he can operate with just his thumb (the iPhone app...

Hi All, Do any of you use a brace or similar to straighten curled fingers during the day? Dave has a brace for his wrist, but his fingers are crampy and curled and need to be straightned sometimes for relief. Any suggestions? Thanks! Lisa

Hi All, Dave had his PEG "installed" on Monday and he is doing great. Uses it for all his meals now. Anyway, he wants to go watch our 15 year old son play in his very first lacrosse match ever tomorrow (just a scrimmage...but still!) but the match is about 75 miles away. We will be away from...