What actuallly kills an ALS patient?

Not open for further replies.


Active member
Mar 11, 2006
I haven't wrote in a while but I have this question that keeps coming in my mind that I thought that someone may be able to give me some insight into.

Dad has been diagnosed with ALS now for 22 months. He is pretty much bedridden now and has "panic attacks" on a regular basis. He keeps saying that he doesn't know if he can hold on much longer. We have given him "permission" but it still seems as if he is afraid to 'let go'.

My question is..... how do this disease actually take you? Do you choke from the unability to breath? Do you fall asleep and not wake up? We are so scared that it will be a bad experience for him. I know that no one knows for sure but I was just thinking about what "could" happen!
Bless your heart, jaci, I know it's hard. I know your heart is breaking right now, and I wish I could be there with you, and be of (oh well, at least of a little help.) Your dad sounds like he is very tired, and he can't go on much longer, bless his heart. How old is your dad? My son passed at 36, 5 mos ago, after 15 mos of diagnosed. He was tired at the end. He was very, very tired. It is sooooo hard to warch your loved one go through something like this. HOW I HATE THAT DAMN DISEASE! My son was , I could say bedridden, because he could not even stand up anymore. He just did not have the strenth! He had lost so much weight, it was heartbreaking. At the end he went fast. His breathing became very labored. I had to call the paramedics twice. The second time O called 911, my son motioned to me, "no DNR! No DNR please!" He was ready to go. This was on a Friday and Sat., by Sunday evening at 5:50 pm he was gone. My baby went to heaven. The saddest day of my life. I felt my heart break in a trillion pieces. Cannot describe what happened right now, but will later, to you, I cannot see right now, my tears won't let me see, and I need to leave to go and pay bills. Will catch you later sweetie, and God bless you both. It is so hard to walk around with something like this in your mind. I do it all the time, I guess till I die. I am gone, babe! Bye!

Because the weakened respiratory and swallowing muscles make it difficult to cough and swallow food, the most likely cause of death is lung infection caused by the inhalation of food or saliva into the lungs, called aspiration.

Taken from: http://www.hmc.psu.edu/healthinfo/a/als.htm
Two weeks ago, at my mom's clinic visit, when he was telling her she needed to consider whether or not to get a trach as her FVC is around 24 now, he told her that the end of life for ALS patients (I guess at least in his experience) is that as their CO2 levels become so high, they have a harder and harder time waking up and eventually there will come a time when they just don't. He went on to tell her that there wouldn't be any panicking and gasping for a breath like being suffocated.

Of course, I'm sure others have had or known of other experiences, but this was something I wondered too and hearing that made me feel a little better about it. I am praying that when it is her time, that is exactly how it happens - very peacefully, in her sleep.

God bless,
My Heart Broke Readng Your Post I Havve Als. I Agree With Your Son.. Im Tired Too. Hugg Sweet Lady
Nikki, God bless you and your mom.

Hi, Maggie! Thank you so much for your kind post. It hurts so much when I post about my son. Here lately I have been crying a lot of tears. It's been 5 months, and I miss him so much. It seems like many, many years. I don't think I'll ever get over this. I know God had a plan for him. I am so out of words. This pain that I am experiencing, I have no words for it.
May God bless you folks!

Nice site, Al. I read the whole thing. Very helpful to a lot of these folks on this forum. You are a great friend! May God bless you! I actually cried after I read it. It took me back to June 3, 2007. I was seeing my baby as I was reading it. I managed to read it through tears. Once again, thank you!

Thanks everyone for your response and your kind words. I think my father has been through enough. I just don't want him to suffer anymore. When death do finally come, I hope it is a peaceful as it can be.
Hi, Jaci! You are so welcome dear. That is the reason why we are all here on this forum to be of some help and support towards each other. I honestly wish I could come up with some more answers, or helpful hints, but I am giving it my all, from what I learned and observed when my son was still around. When my son was diagnosed, I know nothing, nada, zilch about this monster disease! When I got on the internet after he was diagnosed it blew my mind. I felt everything spinning around me, when I walked or moved around I felt like a zombie that was not touching ground. My mind, thoughts, actions, just about everything it was not the same. It was so bad girl, that I could not sleep for a long time, and the few times that I got to doze off I would have some really bad dreams. I am talking about bad, distorted dreams. Do you think that my mind was playing tricks with me, or is this only natural. Jaci, here I am, my son has been gone about 5 months, and I am still posting about him. I really need to let him rest in peace, but my mind will not let me forget him. Is this normal? Pretty soon these members on this forum are going to kick me out because I am like a broken record, over and over! LOL! You have a blessed day, and stay by your sweet dad. That was so sweet of Al for sharing that Hospice deal about the dying. So helpful, very, very helpful I read the whole thing, and it was like watching myself in a movie, as to when my baby passed. The funny thing Jaci, is that I did a lot of the things that was said in that article. I guess it comes from you naturally, eh? Take care friend, and God bless!

passing from als

i have read all of these posts and believe me, i feel for each and every one of you. my husband can still barely walk to and from the bedroom and den to the bathroom, but it wears him out. he chose not to go to the als clinic 90 mi. away as they were not really treating him, just talking to him, and the trip wore him out. he has chosen to let his primary care dr., and pulmonary dr. 7 mi. from our home to treat him from now on.

he, too, is very very tired and on oxygen 24/7. he is using his bipap more often than usual now, and he is sleeping a little more now. both of his drs. have told me his death will come from pneumonia, due to inability to cough up stuff from his lungs. as of a dr's visit yesterday, his lungs are clear, and his breathing capacity is 57. i am hoping this means another few months, but i am like the others on here, it breaks my heart to see him soooooo tired. i know he is ready to go, and i don't think he will agree to a trach and vent if needed.

the stress on me is excrutiating sometimes and i know other caregivers feel the same way. God bless all of you.

jackiemax, all I can say is God bless you and your husband. May he have a peaceful departure, and you, may our Almighty Father embrace you, and console you. It is so hard to say Good bye, and it is so hard to watch them suffer. God bless!

cause of death

All I know is death can happen very fast and sometimes with little warning. My husband, LB, died three months ago. We spent the day before his death out riding around and did a little shopping. Just today, I got an email from one of our PALS for this site, Cherie.
She went by the name Florida Cherie, I believe. Anyway, she sent a nice email but mentioned she was feeling very weak and was going into Hospice next week. Three hours later I got a call from her husband saying she had past away. He said her breathing just became bad and she was gone in just a short time. Cherie lived about 10 miles from me so I traveled this journey with her. She was a very bright lady and I will miss her. Tonight, she and LB are walking those golden streets of Heaven.

terri, you are so right----death can occur without warning. My son was signed up for Hospice on June 2, 2007, and he passed on June 3, 2007 at 5:50 pm. I was so shocked.

Not open for further replies.