Tip on swallowing from my SLP

[KarenNWendyn]

The first swallow in particular seems harder than the rest for my pALS.

Exactly! Applesauce helps me get the first swallow started. To paraphrase Tillie, “do whatever works.”

 

[ReginaS]

I am glad it works Karen! And it really shows how similar and different ALS can be at the same time. My pALS is highly sensitive to the very smallest particles in food/liquid. Apple sauce did not work long before yoghurt stopped working for him. Right now it's ice chips and mostly clear juices w. a syringe. Very small quantities. He still likes coffee

 

[affected]

Coffee was the only drink that my Chris would use a thickener in. No cold drink and not tea (and pre-ALS he drank copious cups of tea). He would drink smoothies etc, but we didn't actually add thickener to them.

But yes, it's that first sip that is the real doozy!

 

[KarenNWendyn]

Hi everyone. I’m now the proud owner of a new G tube. It couldn’t have come soon enough. The problems initiating a swallow had gotten worse along with laryngospasm and food getting stuck on the way down. Even a piece of over ripe banana got stuck last week. Geeez. About the only thing I can eat anymore is blended and puréed foods.

The procedure was ok, but not exactly a day at the beach. Lots of pain. And my heart rate and blood pressure took a nose dive as I was on the table. But it responded to IV fluids.

So my advice to anyone with ALS who has any of the swallowing issues I mentioned— don’t wait. Get the tube.

 

[Nikki J]

I am glad you are through the procedure and hope you feel better soon. PALS often feel more pain and for longer than “ they” say you should but it does pass

I firmly believe that the first time the neuro says you should think about a tube a person should schedule it.

Take care

 

[KimT]

Karen,
Thank you for the update. I've been thinking about you all day and hoping the procedure went well.
Glad it's over and hope you recover quickly. Meanwhile, enjoy watching Stranger Things starting Thursday.

 

[affected]

So glad to hear from you and that all is done and dusted. So true - when you suspect it's time, or one of your health professional team say it's time, just do it.
Chris had a lot of pain for nearly a week, then it eased off abruptly.
It is really important to keep on top of the pain - otherwise to compensate you tend to breathe more shallowly, so don't do that!
I hope you find a surge in quality of life as you settle into how easily you can stay hydrated and fed!