What I have learned, so far...

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I have written here about this before. My mother chose no tube my sister delayed until she was choking on every bit of food , every drop of liquid. It was torture to watch and exhausting to try to feed. I still have a kind of PTSD from it which is why I am answering here. It is a kindness to your family to get a tube so they don’t have to endure that. If you chose you can not use it, stop using it or have it removed but before you die from not eating / drinking unless you VSED there will be some miserable weeks, months for my mother it was years not just for you but for your family
 
Karen and Nikki,

Thanks so much for your excellent advice. I am seeing my respirologist next week. I will discuss with my wife and get something scheduled.
 
Please forgive my questions but, what I believe now is, I have been reacting out of fear and denial . I have chosen not to be an active participant in my disease What does FVC stand for? I am on a machine that inflates my lungs and then I exhale. I can't breathe at all on my own. It actually feels like my stomach is inflating rather than my lungs. And this factor has disqualified me for the clinical trials I've applied to.

I believe that you have the right and responsibility to make decisions for yourself. If you're making a decision about life and death, based on the assurance that you can't change your mind. That is an abdication of your choice for you. If you have to hedge a bet this, is not a bet you should be making.
 
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What does the acronym VSED stand for?
 
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Voluntarily Stop Eating and Drinking
 
Thanks Kim, I did not know what it meant either. Like Oregon, Canada has right to die legislation which is easy to qualify for if you play the ALS card. It seems unusually cruel to force someone to take matters into their own hands with VSED. I don't know how painful it would be but it sounds awful to me.
 
Thanks Kim, I did not know what it meant either. Like Oregon, Canada has right to die legislation which is easy to qualify for if you play the ALS card. It seems unusually cruel to force someone to take matters into their own hands with VSED. I don't know how painful it would be but it sounds awful to me.
I think it would be awful if your organs are still going strong. If your body is starting to shut down anyway, I think it would speed things along if combined with morphine and be reasonably comfortable.
 
Just a reminder to all, please do not quote others' text as many PALS have difficulty scrolling and reading. If you select the "Post reply" button at the bottom of the page, instead of "Reply" at the bottom of a post, no text will be quoted.

And to reinforce what Karen said, you don't need to take eating/drinking from 60 to 0 to have the end of life that you prefer, you don't need to be thirsty or hungry, nor have anyone new involved in a peaceful passage (gradually reduced caloric intake + morphine).
 
Ted, I just got around to reading this post. Thank you so much for sharing your feelings and experience. My PALS, who is a slow progressor, is still in denial despite needing bipap most of the time now. He often refuses to do things because he has to "wait until he gets better." It breaks my heart when I hear him tell visitors that he "just needs to get over this."

I too am concerned about timing on a feeding tube, especially in his current state of denial. My opinion as a CALS is the feeding tube will help as it can be used for hydration as well as delivering meds. I suspect we may have this discussion at our next clinic visit depending on his FVC. Eating is still one of his chief joys:).

I appreciate so much your candid post and your thoughts. I'm glad you are back posting on the forum. You were missed!

V
 
This was a contributing factor in my getting a trach. I am simply removing myself from life support. I have indicated to those around me that I am to be given an obscene amounts of morphine and once I have entered the appropriate state they can Disconnect the ventilator.
 
A great reality check thread. I suspect I may end up in the UMN-dominant camp but like to cling to PLS as long as they’ll let me. I would be more prepared for the possible future but it’s my husband that has a harder time with that.

Hang in there everyone. We can do it.
 
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