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Thread: Eating Question

  1. #1
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    Eating Question

    At what point do you research or enquire into feeding tubes etc? (No need for this now but being vigilant)

    Do you wait until there's a choking incident to know that food isn't going down anymore or does this tend to be gradual? Would be great to hear from those who took the transition.

    Tess x

  2. #2
    Forum Member Ellie's Avatar
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    Never too early to research the issue Tess - put Feeding Tube into the search box and you'll find plenty of threads on it. Also here's the MNDA Info Leaflet on feeding tubes:

    https://www.mndassociation.org/app/u...be-feeding.pdf

    No, it's much better to have a tube before swallowing causes coughs and choking episodes. The swallow doesn't tend to disappear in a few days but often a few weeks can see quite a change, which is why it's good to research and know the very early signs, bearing in mind waiting times for the procedure.

    That said, if your BF has no issues atm, it probably isn't a cause for concern but you're right to think of it.

    The Neuro and/or SLT will keep an eye on him at his regular appointments too.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
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    Hello Tess, I was diagnosed with PBP in Jan 2018. At that time I could swallow without too much difficulty and my speech was still OK as long as I spoke slowly. I have now lost my speech but can still eat "normally" as long as everything is chopped small or minced though it takes me twice as long.
    I had advice from the Neurology Team about when to have a feeding tube fitted especially in the light of weight loss, as if too much is lost a tube cannot be fitted. I decided to have one and a RIG was fitted in August last year. I have not used it for feeding yet (It has to be flushed daily). It was replaced with a low-profile tube earlier this year, which is much more manageable than the RIG.
    My biggest disappointment with the tube is that I have suffered seepage around the tube so it has to be cleaned around daily and a gauze pad inserted around the tube.
    With that experience I wish I had delayed longer before the tube was fitted, but that is with hindsight. I have always been a sun worshipper and I am now concious that the sight of me sunbathing showing the tube can be upsetting for some people. But at 81 I am past worrying about it!

  4. #4
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    Thanks for your responses there. I'll definately have a wee read at some point soon- just to be in the know.

    Stonehengeman definately keep enjoying that sun, I'm sure you've seen plenty of sights sunbathing in your time so you're right in saying to be past caring.

    Tess x

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