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    • #15952
      Dagmar
      Keymaster

      According to an article in ALS News Today, “Around 85 percent of people with amyotrophic lateral sclerosis (ALS) — experience dysphagia, or difficulties in swallowing. These problems usually occur in the later stages of the disease… If swallowing becomes too difficult, tube feeding may be considered. Patients can still eat normally, but tube feeding offers an additional option.”

      If you, or your pALS has a feeding tube, what suggestions or tips can you pass along to those who are in the early adjustment stages? Has having a feeding tube been a good decision for you? What considerations do you suggest others should ponder before undergoing this procedure?

    • #15954
      Dagmar
      Keymaster

      Here is a video from our ALS patient columns writer, Kristen Neva: https://youtu.be/BHf0N0Bup1Q

    • #15978
      Beth Ferguson
      Participant

      I have bulbar onset ALS and my first symptom was dysphagia, followed by speech problems. I needed a PEG tube early in my course and now use it for all of my nutrition, eating and drinking minimal amounts.  Having the tube placed is done under anesthesia, but doesn’t involve any incisions. I wanted to swim during the summer and put off having the tube placed until my pool closed for the year. Once it has been in for a couple of months it can be changed to a Mic-Key tube and then swimming is allowed and it has a low profile which isn’t seen through your clothes.

      For me it has been a blessing since I was choking so often, I am sure I would have had pneumonia by now without it.

       

    • #15996
      Katherine Hooks
      Participant

      My breathing has gone down below 50 and the ALS Doctor wants my to get the PEG. I have a appointment with the Doctor to do the surgery next Friday. So if anyone have any tips on this feeding tube. Thanks to everyone

    • #16001
      Lois Anderson
      Participant

      My feeding tube was installed by a General surgeon 2 months ago after a failed attempt by interventional radiology due to my abdominal anatomy.  In the prep for the ÌR procedure they instructed to drink a bottle of contrast, which I couldn’t do because of my bulbar als. On the day of the procedure they pumped me full of contrast.  This lead to severe constipation.  In short, I wish I had gone directly to the surgeon.  Being 2 months out, all nutrition is via tube.  The only complications I have had is making sure I get enough calories and right now I am battling thrush in my mouth which I read is due to the lack of oral intake.  Best of luck in your decision making!! Lois

       

       

       

    • #16032
      Katherine Hooks
      Participant

      Well I had a meeting with a Doctor for the PEG. He gave 3 choices. One was a tube going down my nose. After that I couldn’t hear anything else. We left and I was crying. I told my husband that if they can’t just do the PEG then I am not getting anything. I want quality of life. Doctors just don’t understand what we have been through already.

    • #16051
      Lois Anderson
      Participant

      I understand the fear of a peg tube.  In my opinion, G-tube inserted into stomach is preferable and the doctor should have lead with that.  Second choice would be the J tube and lastly the nasal tube.  You can research the differences. Not easy choices.

    • #16058
      Mike Minardi
      Participant

      Get a peg sooner rather than later, even if you can still swallow. And as suggested above, after a couple of months get a mic-key. Our recommended supplement is Kate Farms Peptide 1.5. a non-soy-based supplement with excellent vitamins and minerals and each carton is 500 calories. And for hydration, my wife consumes a combination of gatorade and pomegranate juice. And all meds are mixed with water and given through the peg.

       

    • #16065
      GtrJim
      Participant

      My wife was diagnosed with ALS in 2017.  Early on, she lost her voice and the muscles surrounding her mouth, and she could not swallow, so we needed to go to a PEG feeding tube.  All her meds are crushed and we use a syringe into the feeding tube.  Her formula is IsoSource 1.5, (250 mL per carton) fed by gravity feed bags connecting to the feeding tube.  She has had to change her PEG feeding tubes twice due to issues with connecting to the gravity feed bags.  Unlike syringes, which go quickly in and out of the feeding tube, a slow drip from the gravity feed bag is required with her formula to prevent stomach issues and therefore a tight connection is necessary. So it took a while to find the right connection between her PEG feeding tube and the gravity feed bags.

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