Recent content by chriswhit44

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...

My Mom has Medicare and a secondary insurance as well. So far, between the two of them we haven't paid for anything. Maybe a co-pay here or there but the cost has been minimal. I know that is going to change when she needs more care... but so far we have been lucky. My wife and I are the...

Yes we go to the MDA clinic in OKC. This is where we got all of the respiratory equipment for my Mom. We really like Dr. Beson and are going back in September. I realize my Mom needs to wear the bipap at night when she is sleeping. However, she can not put on and take off the mask herself...

My Mom gets SS but not SS disability. She had to retire from teaching when she was diagnosed and when we crunched the numbers... regular SS plus her teacher's retirement was more then SS disability. We were told you can have one or the other... but you can't have both. Combined she make about...

My mom is alone at night... so far. My wife and I live in a 1,500 square foot house with a 1 year old baby, another one on the way and two dogs. We don't have the room for my Mom to move in. However, her house is only 3 blocks away so I am over there a lot. When it comes time for my Mom to...

We have been using the cough assist for about a week. We have it set at a pressure between 35-45 and we do 3 sets of 10 in the morning and then again in the evening. We were told that the reason why my Mom feels so tired is because she is not breathing normally. There is a build up of carbon...