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  1. M

    Help me I'm freaking out here.

    So sorry you had to go through this. Glad your husband can eat puréed food. Unfortunately this happens way too often. I have a Y port. Large and small opening. I was sent home with cone tip syring that didn’t stay in. Ended up taping for many months. Finally got GI doctor to find/give me syringe...
  2. M

    Anyone else diagnosed with Bulbar Onset ALS?

    Hello. I too am bulbar onset. 2020. Now nothing by mouth. I procrastinated and I got the peg tube right before voice and swallowing puréed soup became a real issue. I was steadily losing weight. I still had full use of my arms and legs in May of last year.Use of legs and limited use right...
  3. M

    Bulbar Onset - Jaw spasms/teeth clenching

    Bulbar onset 2020. Yes. I had problem before onset of excess saliva. Broke eye tooth cap. Now I clench when yawn or mouth opening exercises. I’m consciously aware and trying to control mouth closing as teeth still grind a bit. Also bite inside of jaw and inside lips get caught. Haven’t found...
  4. M

    Bolus feeding syringe and PEG connection issues.

    Hi@jimi Returned to GI doc who agreed that plastics not compatible. Gave me a 60cc screw in syringe which is working great. That’s not what I was sent home with PEG. All my formula came with out screw in as well. Soooo glad this works! Thanks much!
  5. M

    What has anyone found best for saliva?

    I started with scopolamine patch which didn’t help with the large amount of saliva I was producing Then I was given glycopyrrolate usp which I couldn’t tolerate. I am now taking atropine sulfate drops. It is an eye drop which I put under my tongue. It has helped tremendously. I also take...
  6. M

    Bolus feeding syringe and PEG connection issues.

    Hi @Jimi Thank you. Am looking into that as well. Keeps coming up in my search. I know there’s something out there that’ll work! Monarch103
  7. M

    Bolus feeding syringe and PEG connection issues.

    Hello 💛affected Thanks for the reply. Initially the Y port and 60ml syringe stayed. Then it started easing out during bolus feed. Tried new syringe that wouldn’t stay at all. It was like air was pushing it out. Doctor changed Y port and clip. Same issue. The tube plastic is soft. The syringe...
  8. M

    Bolus feeding syringe and PEG connection issues.

    Hello. I’m new to the forum. It’s nice to have a place where others can relate to your situation and give support. Diagnosed bulbar palsy April 2020. Retired in May 2021 because of inability to speak. Still mobile albeit slow go though with left hand and left frozen shoulder. Got a PEG tube...
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