To PEG or not to PEG, that is the question:

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Lobster

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To PEG or not to PEG, that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous weight loss,
Or to take arms against a sea of saliva,
And by opposing end the choking?

I could go on, but instead I will simplify my query: Who here has decided to forgo the rubber hose through the stomach? I am leaning toward skipping it on my way to "The undiscovered country".
 

Ms. Pie

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I'm going to go the peg route. I'm quite small as it is and I'm too busy having a good time to die yet! :)
 

BeckyW

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I'm getting a peg on Wednesday. I can still eat but chocking on meds not fun. I found a liquid multivitamin called Reviva at Costco that is loaded with most most vitamins, antioxidants and fiber. It's tastes ok but I sure won't miss the taste at all, but maybe the chocolate that follows. :p
 

susanf

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I'm opting for the peg too. I decided to treat each condition as it arises. Plus I want to see my daughter grow up.
 

Beach Bum

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it was 68 years ago,and I rubbed my nose and felt around on my mothers breast and found her nipple and gently sucked life in.She held me and guided me for many years and I grew and had a blessed life.I have had all the chocking and swallow issues,I can not control anything in my mouth,have no lip seal at all,the days of the straw are all gone,brushing teeth is a problem.I had the PEG April 26th 2011 and it has saved my life,and made it so simple.I thank God for all of todays science and pray I will be alive and a cure will be found.--Hugs Ken
 

ccurths

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I agree with Ken!
 

Miss

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PEG, PEG, PEG. No question. The alternative is sheer hell.
 

joni51

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How are you Miss? Hugs to you sweet lady! I know it is tuff..
 

joni51

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Scared me there for a minute Ken, when I read the first line..lol
 

notgivnup

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If at all possible PEG...Life is worth livingas Ms Pie said!

Is it expensive to get a PEG? with only medicare? anyone know?
 

10steps

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My husband won't be doing PEG. He likes to eat and continues to do so. What he can eat as far as consistancy has changed, so no more steak and baked potatoes. It's meatloaf and mashed potatoes and gravy....on everything. Eggs and bacon for breakfast and icecream shakes made with boost.
He's thin but he was very active and in shape when this all started. He doesn't take many meds only 2 and one dissolves under the tongue anyway. It's a challenge to swalllow the other small pill so he takes it with ice cream.
He wants to live so he's not trying to hurry things along; he wants life to play out. He's considered advanced stages and looks like swallowing will be the last thing to go. He isn't unhappy with his choice.
 

michael0314

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I am in the minority here. I have chosen to go o natural. When and if I can no longer swallow I will no longer eat. I lay my life in gods hands. No one leaves this life before his or her time. I will say originally I left it open to change my mind but so far no change. I respect all of you who choose to fight. I don't fear the end as much as I do the process of....
 

brooksea

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I haven't commented on this, as I'm not a pALS. But, I hope those of you that choose NOT to have the PEG realize that you will also be denying yourself of hydration, not just sustenance in the form of food. Once you get to the point that you are having trouble with thin liquids, how will you live (OK, Thickit for just a while)? If your diaphragm muscles are still good, you could be around for a long time while torturing yourself.

The problem is, everything else in your body could be just about fine, except swallowing! My pALS would love the reverse of that! But it IS your choice. I respect it.
 

BarryG

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I think allot depends on your onset. As a bulbar onset I lived, worked and traveled for a year and a half because of my peg tube. And CJ is right it's more than food. There will come a time when you can't even swallow your own saliva let alone eggs and ice cream. I originally said no to the peg tube until I was starving and that was in the fall of 2008. I haven't eaten food by mouth since January of 2010.
 

michael0314

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I have written and erased 3 times. I am not saying this is right for anyone.... else. I am absolutely not trying to convince anyone this is the right choice, it is however my choice. I do realize I wont be able to swallow water as well as food. I understand it won't be a nice quick death. Is there such a thing? I totally respect those who choose to take medical measures. I only ask that my choices are respected too.
 
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