Eating/drinking.

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nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Starting last night, when I swallowed, I felt as if there was a lump in my throat. When I try to drink liquids, I burp and regurgitate much of the drink. I think my esophogus motility must be going down. Any suggestions. I've had hardly any food today.
 
We haven't been able to find an adequate peg formula yet although nutren 2.0 seems promising we are only up to 1.5 cans (750 cal) per day.
 
Have you tried thicker drinks like smoothies or foods like applesauce
 
And for the tube feedings have you tried the pump for slower feedings? That was the only way my sister could tolerate them. I hope you can swallow enough for a very long time of course
 
Neil, how crap.

I also wonder if thick but consistent foods or smoothies will help.

Lots of calories but nice and thick.

What about making it and pouring half down the peg instead of a formula and sipping half by mouth?

Have you joined the peg group on fb? Lots of info there as it's not an ALS site just people with pegs and they have so many tips and real food recipes.
 
>Starting last night, when I swallowed, I felt as if there was a lump in my throat. When I try to drink liquids, I burp and regurgitate much of the drink. I think my esophogus motility must be going down. Any suggestions. I've had hardly any food today.

been fightin' this for a couple of months now --- smaller amounts hourly. Sandy has to hold cup :-(
 
Go for the PEG, Max. It makes life easier...
 
My speech therapist suggested turning my head slightly left or right, with my chin slightly down. I had to experiment to find which worked best for me. Have you tried that?

And the same day (clinic ) strongly suggested that it's time for tube installation.

And yes, I've noticed the same lump-y feeling and have been swallowing a LOT of air.
 
Az, you are in my prayers as you decide what your next step is.
God bless, Janelle x
 
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My husband has great difficulty swallowing, especially solid foods of any kind. His barium swallow showed that foodstuff is collecting in a small pouch in his throat and he must swallow multiple times to try to clear this.

I started making smoothies for him consisting of whole milk, Boost Plus, Whey Protein Powder and ice. Sometimes I'll toss fresh fruit in there, too. He absolutely loves the shakes and the average calorie count per shake is 740 calories.

He also finds that if he sits leaning back a little, it's much easier for him to swallow. Hope this was helpful. Good luck!
 
Can't figure out if I can edit previous post to add something, so just adding a new post. LOL

I wanted to mention that he had been dropping weight very rapidly. He didn't want to eat because it was so laborious for him. With the shake supplements, I have brought him back up 11 pounds in the last 3-4 weeks.
 
It also helps if he draws his chin into his chest and then swallows.
Love Gem
 
>Go for the PEG, Max. It makes life easier...

jury's stiill out. we'll see
 
shakes are good, pureed food is good to still get all the flavor at half the work.
the feeding tube is a personal choice.
i got the tube a month ago, even though Im eating eating pureed food no problem.
what a weight has been lifted, even though Im just using tube to top up calories and hydration.
Im healthier, stronger and even gaining weight.
did i want it? no! did i need it right now? not really.
it was time for me to get it done.
am i happy i have a tube coming out of my beautiful body? ah, no!
am i happy my family won't have to worry about me being dehydrated or starved? absolutely!
personal choice, but it does affect more than the pals.
good luck to everyone :)
Casey
 
> am i happy i have a tube coming out of my beautiful body? ah, no!

True. But it isn't especially gross either. Just a silicone bumper with a tube. No biggie.

I did tell a coworker that it made me feel like I'd been assimilated by the Borg! 8^)
 
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