Experiences with Bulbar ALS w/No PEG

[Katie C]

Nighthawk.. you might want to do some more research. Most authorities say that death by starvation actually causes a state of euphoria, rather than pain. I'm also not sure about your figure of 90% on the board having PEG's. Honestly the reason googie is not getting the answers she wants is because we each give her a different answer. Glen didn't have a peg, but didn't starve to death, he died from aspiration pneumonia. This is not uncommon. Another person's PALS didn't have a peg, but sadly died from hitting his head during a fall. My mother was in a coma at the end of her fight with lung cancer... no feeding tube, nothing invasive, but she died peacefully. Nobody is trying to withhold information.. there are just as many answers as there are people on the forum!

 

[Nighthawk]

@Katie C,

The 90% of PALS on this forums getting the PEG-tube was a figure I came up with based on old threads I've been reading. Almost everyone I've contacted here belongs to the "get it sooner crowd", I can give you countless examples of reputable "old timers" forum members who have gone the PEG-tube route.

But, wait, the PEG-tube applies only to PALS with Bulbar onset involvement mainly (which also affects swallowing).
I know PALS with Limb onset who never develop Bulbar problems nor swallowing problems and thus, wouldn't qualify for a PEG-tube procedure so it wouldn't apply to them.

I know PALS die from different causes which range from falls to pneumonia, nobody is refuting that fact. But, what the OP (original poster) is asking about is related to experiences of PALS without a PEG-tube, what happens to them until the very end, I think that's what she wants to know.

About dying peacefully from starvation, how can the authorities say with a 100% confidence that the person dying from it is not suffering? Are they inside the body of that dying person to experience what that person is going through?
They are assuming that information but they would be making a bold statement affirming that person didn't suffer at all.
Furthermore, I didn't categorically affirm the person dying from starvation would be suffering, I'm assuming he/she would because it wouldn't happen overnight, it would happen after several days on that state. Right?

I've heard some say that dying process is actually like giving birth (labor pain), something similar in both events. To the ones standing right to someone's deathbed, the process may seem peaceful, but to the one going thought it all the way, it might seem different since he/she probably loses track of the time and the process itself might seem to be longer than it really is. So, no one knows for sure...do they?

But that is a profound discussion for other kind of thread.


NH

 

[googie.cat]

Katie, I'm in no way thinking that people are withholding information, nor am I somehow thinking I've gotten no responses. I was just wanting to hear as many experiences as people are willing to share, and I hope you don't begrudge my desire to just collate whatever information I receive and process it in my own way.