Thank-you all - Amyotrophic Lateral Sclerosis (ALS) Message Board

ericaw · 07-15-2005, 11:49 PM

I have called the als people in our area and they are gonna provide alot of things for my patient.They have a loan program and it is very easy.I am still worried about what is to come, the person I talked to was very honest with me and suggest that everything we need we should get now.I am scared and don't wanna see her die,but this what is too comeand I want to be there for her and I said I would.Thank you all this board has been very helpful and anything else anyone can help with would be appreciated.I know she won't be able to communicate with me in the long run and she won't be able to breath one day on her own.But I have one question.When I know it is time for a feeding tube or a bpap.She is eating fine now and can do pretty well.One day will she choke on food and that is when or what???Please someone with experience please be honest and let me know what happens step by step.I am that kind of person,the truth always hurts but knowing is half the battle.thanks
"E"

tip2mol · 07-16-2005, 10:23 PM

Hi,

The progression for each person with ALS is different. As you know- the key word is : The disease is progressive. It does start in one area and then moves on to another part.
Yes- it is quite likely that the person that you are talking about will in the future start choking (this could be on just their own secretions in their mouth or on food (or both)). At the point that a person starts having any type of choking problem or has increased weight loss is the time that it is best to go ahead and get a PEG (feeding tube). It is very important that a person with ALS does not wait until the weight loss is significant or there is breathing difficulties (this makes this very simple procedure more complicated and increases the risk). A person with ALS should be followed by a pulmonologist. They will keep track of the patients pulmonary functions and will recommend at the point that they feel the patient needs to be on a BIPAP. This is not permanent ventilation- but does help with giving a little more time as it helps to keep the CO2 counts down. A person with ALS doesn't actually have trouble with getting in enough oxygen, but they can't breathe out the waste product of Carbon dioxide (CO2) and that is what causes the respiratory shut down.
You are doing the most important thing that you could possibly be doing. You are being proactive. You are learning what needs there will be before they actually occur. This helps more than you could imagine.

Please take care

ericaw · 07-20-2005, 12:26 AM

thank you for all the support.I am really scared of what's to come.I will be there for her untill the end.But it is so hard to deal with.She is mad and don't see the point in living if she is sick like this,I try to keep things upbeat and tell her it will be alright but I am lying to her and myself.I am just venting now and need to go to bed and stop stressing myself I do have my own family to think about but I am so wooried it keeps me up at night.The bpap the feeding tube all of it the dying.I don't want to talk about that to her.It might be for myself as well as for her sake.But I will try to rest and wait to see what tommrow brings.It is getting tougher by the day.but thanks to you for making me understand what is important.

BarbaraH · 07-30-2005, 11:46 AM

Erica,

Sadly, the end will come sooner or later as you know. The breathing and feeding assistance do prolong life to a degree at the cost of increased dependance. Some patients choose this and that's fine. Some patients choose to refuse these measures and that is fine for them. Some patients choose to refuse, then change their minds and request the assistance, and that's fine, too.

The difficuly for the people who love the patient is to allow the patient to choose and to go along with their choice. It is so very hard, but you need to understand her wishes while she can tell you. Give her permission to tell you what she chooses, even if you don't like it. It's okay to cry.

The ALS people will help.

Blessings - Barbara