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Thread: Advice needed

  1. #11
    Forum Member JAY TEE's Avatar
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    rubray, the thick saliva is big problem. I have LSU sucker Lamdal Sucker Unit which I use before eating and before clean mouth before taking Carbocisteine and eye drops. I also have a Clearway unit blowing through mouth and nose. Also got Riluzole tablets and Lansoprazole tablet.
    I coming up six years since formally diagnosed with MND. Mine is all down left side luckily still use computer and drive my wheelchair and use sit stand hoist get me in out bed but cannot talk. Have had peg fitted but only use a bit as if food mashed up still manage to swallow
    Best wishes John

  2. #12
    Forum Member Terry's Avatar
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    Hi,

    I have been having trouble with thick stringy mucus in my throat for a while now and it is causing me to cough a lot. I am trying but normally failing to drink more, drink red grape juice and have cut most of dairy.

    I asked the doctor for some carbosistine, via wife and telephone.

    She said that was for the lungs and has prescribed some sort of patches.

    Love Terry

  3. #13
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    I have a small can of ginger ale with my tea which helps with this problem Terry. Janette x

  4. #14
    Forum Member Terry's Avatar
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    Hi Nettie,

    Never been keen on ginger ale but tastes changed.

    I might give it a go, my wife will drink it if I can't.

    Love Terry

  5. #15
    Forum Member Ellie's Avatar
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    Sorry you're having this problem, Terry.

    Quote Originally Posted by Terry View Post
    I asked the doctor for some carbosistine, ... She said that was for the lungs
    Carbocisteine is a mucolytic agent for the adjunctive therapy of respiratory tract disorders characterized by excessive, viscous mucus, including chronic obstructive airways disease and the respiratory tract includes the throat.

    It is the recommended medicine for managing such secretions in MND, as per the MNDA info sheets, so I don't know if you want to go back to the GP? The patches may be hyoscine, which dry up saliva.

    In the meantime, the enzymes found in pineapple and papaya juices, help break down protein in the mucus, thinning it.

    Can you get a nebuliser?

    Is your cough strong enough to cough up secretions if they are thinned?

    I won't bang on about making sure you get enough water into you!!!

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

  6. #16
    Forum Member Terry's Avatar
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    Thanks Chimp;

    I do cough up the thick stringy stuff.

    I do have a nebuliser, always recommend it but never think to use it.

    Will try a different juice, I did manage a ginger beer with my curry tonight but don't think it made any difference.

    Love Terry

  7. #17
    Forum Member Ellie's Avatar
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    Yes, the nebuliser doesn't work so well when it's in the cupboard

    Both pineapple and papaya juice cut through thick mucus.

    Hope you can thin it and get relief.

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

  8. #18
    Forum Member Terry's Avatar
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    Thanks for the sarcasm, Chimp,

    Are you saying that hyoscine patches will probably do more trouble than good?

    Love Terry

  9. #19
    Forum Member Ellie's Avatar
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    Yes, Hyoscine reduces saliva production so you won't swallow as muce saliva, meaning the sticky mucus could get thicker - you'd need to substantially increase your water intake.

    Of course the GP should prescribe you Carbocisteine in the first place Would you let MND Connect ring her??? I can attach the relevant info sheet for Healthcare Professionals if you like?

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

  10. #20
    Forum Member Terry's Avatar
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    Went to the hospice today and the nurse there said no way to patches.

    She has given me some pain killing patches to try so was reluctant to change two meds at same time.

    Nurse also thought that breathing exercises would help but I'm not so sure and that will be next Friday.

    I will see how weekend goes and see next week.

    Thanks Chimp, love Terry

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