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Thread: Pain/Agony

  1. #41
    Forum Member Terry's Avatar
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    Hi Christine,

    It doesn't take us long to forget how to use legs, because even after nine years I think that they move like a normal person's does, automatic reset.

    Can't see how feeding tubes increase the risk of any thing going into the lungs. Sometimes I don't clear the mouth completely before I put more food in and that causes problems. Getting tired when eating can also cause problems.

    You don't have to use a feeding tube all or any of the time. But handy for the occasions when you do.

    Love Terry

  2. #42
    Forum Member Broostine93's Avatar
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    Thanks, Lynne

    Terry- absolutely agree. It must feel so strange!

    The quote from one of the articles I read is below:

    "About a quarter of patients will have a complication, such as tube occlusion, wound infection, pain, aspiration pneumonitis, and peritonitis, after the PEG tube is placed.16 Aspiration occurs frequently after PEG tube placement and can occur in up to half of older patients with feeding tubes regardless of whether nasogastric or gastric tubes are used."

    Source: https://www.the-hospitalist.org/hosp...be-or-not-tube

    Might be useful for someone to read when trying to make their mind up as to whether to have the PEG or not.

    Personally, I like the idea of the PEG- I think it's brilliant for providing nutrition when one doesn't enjoy or want to eat food anymore and I think the idea of being able to administer medicine through it would be invaluable during the 'late stages'. I don't think Gran agrees (and, understandably doesn't want to think that far ahead to see the practical advantages of it). It's her choice and I can see where she's coming from with regard to 'not wanting to linger' as she puts it. I do very much worry about what's to come when food can no longer be swallowed, though.

  3. #43
    Forum Member MNDConnect's Avatar
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    Hi all

    Pain and whether it is a symptom of MND or not is something that gets discussed a lot both at the MND Association and in the wider world.

    The dying of the motor neurones themselves isn't painful. The effect that these dying motor neurones have on the body can be painful. So cramps, chest infection, immobility, etc can all be very painful. Pain is usually felt through the sensory nerves which are not believed to be affected by MND and so experts say that MND does not cause pain. The symptoms of MND do cause pain.

    I think it's as very fine line and it's something that is often discussed at the MND Association.

    Best Wishes

    Rachel
    MND Connect Adviser

  4. #44
    Forum Member MNDConnect's Avatar
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    Hi all....me again!

    Regarding PEGs, they can help to prevent aspiration as they enable people to receive nutrition without the danger of trying to swallow and so aspirate. Swallowing is a very complex process and with MND, some of the important steps can be ineffective and so food and drink travels to the lung and can cause a nasty infection or aspiration pneumonia.

    There is a risk of aspiration with a PEG tube which is one of the reasons why someone should never lay flat whilst the PEG is used.

    Best Wishes

    Rachel
    MND Connect Adviser

  5. #45
    Forum Member Lynne K's Avatar
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    Thanks Rachel from MNDA. Do all MND sufferers eventually benefit from a PEG and when's the best time to have it done? I'm not too bad swallowing. In the last 6 months a bit of difficulty half a dozen times, but nothing serious and no chest infections. Thanks. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #46
    Forum Member MNDConnect's Avatar
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    Hi Lynne

    Not everyone with MND has a PEG. Some people choose not to have one and for some people they don't experience any swallowing problems and so don't have one.

    People often have a PEG fitted quite early on or as soon as swallowing symptoms start to appear. Having the PEG doesn't mean that you have to use the PEG. You can have a PEG fitted and carry on eating and drinking. This means that the PEG is already in place if and when it is ever needed. People often first use the PEG for medications as it takes away the difficulty of struggling to swallow tablets.

    If you are having some swallowing difficulties then it's worth mentioning a PEG to your healthcare team. They could tell you more about the procedure so that, should you need one, you can make an informed decision about it.

    Best Wishes

    Rachel

  7. #47
    Forum Member Lynne K's Avatar
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    Thanks Rachel. I'll speak with my neurologist when I see her next month. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  8. #48
    Forum Member Ellie's Avatar
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    Hi Chrissie,

    So glad your Gran has recovered well and is back in the nursing home.

    Quote Originally Posted by Broostine93 View Post

    Ellie- I read up about feeding tubes and aspiration-related chest infections/pneumonia and it said that PEG doesn't decrease the risk- in fact, it increases it!
    In ALS/MND, a feeding tube is not associated with an increased risk of aspiration, but it does decreases the risk. As Rachel said, giving feed or liquids through a tube should NOT be done when the person is laying flat or almost flat.

    I saw the link in your post discussing feeding tubes and it's not really appropriate to compare PEG placement and use in a person with MND who cannot safely swallow, with people who are failing to thrive, have cancer or GI issues etc.

    But yes, as with all surgical procedures, from the removal of a toenail to cardiac surgery, an elderly person is more at risk of complications and that goes for a PEG procedure too.

    It is a complex decision for your Gran to make and I wish her well.

    Take care (hope your stress levels are somewhat reduced!)

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

  9. #49
    Forum Member Ellie's Avatar
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    Hi Lynne,

    Sorry for butting in !!

    Maybe ask your SLT for a videoflouroscopy swallowing assessment ?

    It's a live X-ray video of you eating, for example, barium infused yoghurt, crumby biscuit and drinking water and will pick up on any subtle difficulties on how you swallow different textures - it's also pretty cool to watch

    That way you can keep track of what's happening and give you an idea on whether or not you'd benefit from a feeding tube.

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

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