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Our beloved Ms Pie who I know on many occasions has offered me much neede advice when my sister was on her journey with ALS, has gotten her wings and is now free from the beast. Our prayers go out to her family.

I'm so grateful for this forum so far. My mom was diagnosed 3 MONTHS ago and this disease is kicking her butt. Everything is happening so fast, my brother and I can hardly come up for air. She's barely walking, speaking, breathing (uses a bipap and cough assist) and then she couldn't swallow...

I was asked if I could post this link for another person. It is to a blog about Living Well With a Feeding Tube. If you are interested, the link for this person's blog is: Tube Chic | Living well with a feeding tube. Again, this is not my blog. I do not have a feeding tube, so I cannot...

I have to laugh at some of the mail that has been coming to the house for my sister who passed away in Dec. 2011. I opened one and it said that she had won some money and all she had to do was appear in person to receive it. I really had to restrain myself from sending a photo of her...

My sister is free from ALS now. She passed away today. Her suffering is over. Gonna be hard on my Dad, but I think he realizes through the grief that she is better off.

I have noticed now when I am feeding my sister that for some reason I noticed that she is jutting her lower jaw out. Have any caregivers run across this with their PALS? I was wondering if it may not be a way for her to compensate for breathing/swallowing. I keep asking her if she wants the...

What kind of changes do caregivers notice in nail beds to indicate breathing is compromised? Reason I ask is that when I ask sis if she is having problems breathing, she just tells me "sometimes".

This may be a stupid question, but need to ask. I am noticing a pattern with my sister. Her temperature has been steadily declining. Last week, it was 98.5 and it has been going lower each day. Her temp is now 97.1. Resp. is 20. Pulse rate in high 90's. BP: running 112/73 and sometimes as...

My sister was devastated when she talked to the hospice nurse about a feeding tube because she is having greater difficulty swallowing. Due to the fact that my sister is not able to tolerate being in a sitting position because it is too painful, the hospice nurse explained to her that because...

My 13 year old daughter went down to my sister's (who has ALS) to help me check on her and care for her. My sister tells me her leg hurt because it fell off. My 13 year old only heard that much up and got the "creepies" and was shivering going "ooh" because she thought my poor sister's leg...