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I am the only family that my Mom has in the state. My sister, who lives out of state, visits about once a month. However, my wife and I are the only "free" help available. Maybe we will start paying for care every 3rd day and then ease into it. Not to get political... but I am embarrassed...

I am praying that she passes before she runs out of money... not praying that she dies within the year. Also, my Mom has decided not to use a ventilator and has a DNR. When she becomes bed ridden... the only thing we won't withhold from her is her food. Going to a nursing home could be worse...

Before you read this... my intention was to get your opinion... however, by the end, it has really turned into me ranting about how horrible this disease is... so I understand if you don't read any further. I've posted on here a couple of times and the replies have really helped so I thought...

Does anyone's loved one exhibit a very high anxiety level when it comes to ALS? Obviously being diagnosed with ALS would cause anxiety... but I am talking about much more then that. My Mom has levels of anxiety that I have never witnessed before. She checks her mailbox 4-5 times a day, even...

My Mom still speaks... but barely. I have to really pay attention and listen closely to hear her. I don't think I would understand her over the telephone. I am going to monitor her decline closely this week to see if she continues to slide down or levels off. This disease is evil... no...

This past week, my Mom has started to become more tired. She has plateaued over the last 3-4 months and then just like a light switch... she has started to become more and more tired. An example: I usually go to her house at 9:30 a.m. for her first tube feeding. She is ALWAYS awake and in...

My Mom has ALS and has a feeding tube. She was hesitant at first, but soon grew tired of aspirating 100% of the time when she tried to eat. Her weight got down to 120 lbs. and since the feeding tube was installed... it has plateaued. One of our very first visits with her doctor after her...

I just watched the BB 1,000 demo on Youtube.... it looks great and I am going to look into it. Thank you!

My Mom's ALS has affected her upper body. So much, that she uses a peg tube and has pretty much lost use of both of her hands/arms. So when she has a bowel movement, I have to clean her. My question is this (and I will try and be as discreet as possible): Even when she has a very small bowel...

I think the one of the main signs of ALS is the tongue twitch test. Not sure what the medical term is called... but I remember the Dr.'s pricking my Mom's tongue and based on how it responds is a very good indicator that it is ALS. The diagnosis of ALS is really more of eliminating other...