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  • LesleyJ
    replied
    Thanks so much everyone, this forum is so supportive

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  • Sheila
    replied
    The same thing would happen to me with the throat muscles and cutting off the airway, it is very scary. It is surprising what flavours and textures sets it off. And the mucus builds up in my throat. Not nice.

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  • Hayls
    replied
    I started with Bulbar symptoms and was affecting my taste tolerances, to the point my throat muscles would spasm and either spray anyone or anything of what was in my mouth and or cut off my airway which is very distressing but I was lucky that I knew that I needed to calm down for the muscle to release to begin to breath again, it’s very scary and seeing my family faces when this happens I know caused them a huge amount of panic but luckily they, I’ve had to avoid a lot of flavours and textures to make it less of a risk but my emotional lability is still not controlled which affects my breathing substantially, my respiratory specialist says my respiratory system is unaffected by my MND but my emotions are affecting it, could this be affecting her? Defo avoid anything triggers and find an alternative, wish you lots of luck that you find what works

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  • Ellie
    replied
    Oh I know those Lesley - luckily I took them through my feeding tube

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  • LesleyJ
    replied
    Thanks everyone, I think we need to chat with dietician. The drinks she has are nutricia calogen extra shots strawberry and they are making her gag (they look lovely as well!)

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  • Terry
    replied
    Hi Lesley,

    I have fortisip chocolate 220 ml drinks, which are not as gloopy as the more consentrated smaller ones. Also very cold things can be easyer to drink.

    Certainly the fruit base ones would be different consistency

    So loads of things to ask her diatian about.

    Love Terry

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  • Ellie
    replied
    Lesley, or if you or your mum ask the Dietitian for a sample of Nutricia's Nutilus Fruit, Nutilus Complete Creme and Forticreme Complete, these are all pudding style, nutrionally complete desserts which she may like.

    And yes, the Dietitian can easily request or get samples

    Hopefully your mum can keep her weight up.

    Best wishes to you both.

    Love Ellie.

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  • Kayleigh
    replied
    Hello Lesley,

    I found those small bottled drinks tasted too unpleasant and the consistency was too thick for me to swallow comfortably and it made me cough. (However, some MND patients might find it easier to swallow drinks that are of a thicker consistency than water or milk).

    I find that Complan mixed with milk tastes very pleasant and is suitable for my needs. I bought a box of Complan to try but my GP now prescribes Complan sachets for me (and he very kindly asked what flavours I prefer, so he can put them on the prescription).

    Perhaps Complan would suit your mum better? If she likes the taste of Complan (or similar) but the consistency isn't thick enough then a thickener for drinks can be added.

    Love
    Kayleigh x
    Last edited by Kayleigh; 19 December 2019, 12:59.

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  • LesleyJ
    replied
    Thank you all so much for your responses.

    They are the little plastic strawberry drinks provided by the dietician. She absolutely hates them. I suggested that she might want to think about the Peg tube but it was a definite ‘no not yet ‘ from her, I explained that it could make things easier and you can still eat normally if you can.

    Onwards and upwards xx

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  • Sheila
    replied
    Thank you Deb and Dina, I am still getting use to the peg, it's only been two weeks, but I notice my chewing and swallowing have got worse. So I reckon just in the Nick of time. Now to try and put on some weight.
    I hope you all have a good Christmas.

    Love Sheila x

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  • Gillette
    replied
    Lesley, I’m sorry your mum is having panic attacks - they are horrid to suffer but also for loved ones to witness. You are doing a great job supporting your mum.

    Sheila’s post hits the spot. Well done, Sheila, and I’m pleased that you are finding the PEG so helpful.

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  • Deb
    replied
    That's another "like " from me for your post Sheila.

    You have inspired me to pluck up the courage to ask about a PEG at my clinic visit in the New Year. It hasn't been mentioned to me but I have been reading all the advice about getting one sooner rather than later.

    Thank you,
    Love Debbie x

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  • Sheila
    replied
    Hi Ellie,
    Thanks Ellie, you know I have learnt from the best.
    Hugs
    Sheila

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  • Ellie
    replied
    Hi Sheila,

    If there were a Like button on the Forum, I'd have Liked your post - lovely to read your advice.

    Love Ellie.

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  • Sheila
    replied
    Hi Lesley
    I suffer from panic attacks attacks As well. And they are scary. I do choke sometimes on different food and drink . People around your mum should remain calm, and help her to relax.
    I had a peg fitted 2 weeks ago, and definitely helps with feeding. Something to think about.
    Take care
    Sheila

    Leave a comment:

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