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lostin

Active member
Joined
Jun 21, 2011
Messages
63
Reason
PALS
Diagnosis
09/2010
Country
th
State
phuket
City
patong
My motor neuron disease [ALS] is marching on. ..i am almost paralysed. still have a bit of movement in my hands so can use an onscreen keyboard and can still turn my head a little but i have to wear a neck brace.

i actually start choking now before the food is even in my mouth and I'm even choking on jack Daniels and coke :-[

I'm dreading it.

my main carer jeab, me and my mother
100_1470-1.jpg
 
Hello Lostin! From what I understand it's best to get the peg before you need it so the sooner the better. The good news is that you can still have a Jack and Coke with a peg. ;)
 
Don't know if it's the right time for you to get a peg but I do know that liquids are often the first thing to go. If you feel the need then maybe that's a sign it's time. Remember you can still take what you like orally while using a peg. Great to see your photo.
 
Lostin,
Don't add any coke or anything else.LOL,I held off my Peg as long as I could and my advice is get it now.I cannot swallow now and the Peg makes everything so simple.Have had no problem losing weight and feel good.Good luck to you,like the photo!--------------Ken
 
Lostin,

I got my PEG two months ago and still don't need it, but I'm still happy I have it. You need to get it BEFORE you need it so it sounds like you should pull the trigger. If you start losing weight it is bad for your ALS progression.

If you are able, you can still eat and drink normally even when you have a PEG. That includes your Jack & Coke!

-Tom
 
What a beautiful picture of y'all! Thanks for sharing!

My husband did not need the PEG when he got it, over a year ago. He still manages to eat, but barely. He has lost weight because he is stubborn and wants everything by mouth. I have finally persuaded him that he must be tube fed the formula and then he can eat whatever he wants that can be pureed.

I would suggest you get it now, before it is too late. And then USE it if you have the slightest bit of trouble eating, whether it be chewing your food or swallowing. Then you can it what pleases you for taste, as long as it is manageable.

Good luck!
 
Get it as soon as possible. It makes a big difference in energy and just feeling good. I use mine for water and supplements when crunched for time.
 
Get it now and use it when you need it.
 
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