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Thread: bulber onset and peg

  1. #1
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    bulber onset and peg

    Hi all
    My friend has bulber onset and is finding it difficult to eat without choking episodes but is refusing to get a peg fitted. This might sound a silly question but how will they be able to get nutrition if they dont get a peg.

    Thanks
    Staney

  2. #2
    Forum Member Ellie's Avatar
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    Hi Staney,

    If your friend is refusing a PEG, are other means of feeding are also out? (eg naso-gastric tube which isn’t an invasive procedure)
    If your friend wants no artificial feeding, then a Dietitian can offer good advice on how to continue eating & drinking safely for as long as possible.

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

  3. #3
    Forum Member Terry's Avatar
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    Hi Staney;

    It can be very hard without a feeding tube but some people do manage. Ellie gives you some excellent advice, also their SALT can help with advice.

    I don't know what stage they are but a lot can be done by changing their eating habits. Both in what they eat and the way it's eaten. Certain consistences are much easier to eat and swallow. Eating with out distractions, keeping your chin down when swallowing does make things better. Eating small mouthfuls and make sure that you clear the mouth before you eat any more. The dietitian can prescribe thick drinks that provide all of your needs in about 6 number 200 ml bottles.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
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    Thanks for the advice Ellie and Terry.
    Much appreciated.

  5. #5
    Forum Member Terry's Avatar
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    If you want more help, just ask Staney;

    We do know a lot more just be more specific and work out when and maybe why things are happening. There doctor can prescribe the drinks and/or you can buy them.

    It is important to keep their weight up as much as possible.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #6
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    Thanks Terry

  7. #7
    Forum Member Bakerchick's Avatar
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    Hi Staney - I have a PEG and it has saved me from aspirating my food. BC

  8. #8
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    Thanks B C.
    I don't understand why he doesn"t want it done, but then I'm not the one with mnd. Will have a word when I see him and try to find out his reasons behind his decision.

  9. #9
    Forum Member Katrina36's Avatar
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    Hi Staney, sorry to hear about your friend. My dad had bulbar onset and originally he was dead set against having a peg, but once he started having more choking episodes and really started struggling he changed his mind and got one.
    Like Ellie says he could always have a ng (naso gastric) tube.

    Dad went through stuff like, mashed food with lots of sauces, then we blended all his favourite meals with plenty sauce into it, smoothies. There's a guy on here DVD he makes his friend who had bulbar onset smoothies also.

    It's about trying little bits to see what textures he can tolerate, of he can still drink, the dietician can arrange for him to have ensures that have all the calories and goodness in a 200ml bottle and they will decide by his weight how many he would need.

    Like others have said, keeping the chin pointed downwards to the chest helps for swallowing, small amounts in the mouth at a time. And quite importantly no talking when eating, as dad needed his full concentration on his swallow.

    Also try not to have too many textures on one plate. And a good tip I noticed with dad was, he could say eat something then have a drink then eat then have a drink as his swallow wasn't prepared for the speed of the fluid as he was used to the food, so I'd suggest waiting to drink until after he's eaten unless he needs it, just careful and take his time.

    It's a lot to take in, the dietician and speech and language will access his swallow to see what he can manage... Katrina x

  10. #10
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    Katrina

    Thanks for the advice, as you say a lot to take on board. I've been trying to get him to join the site for hints and tips but he's reluctant to do so at the moment, but I will keep trying.

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