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  1. #31
    Forum Member Terry's Avatar
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    I don't think that he will get it Coco;

    But it's well worth asking Mnda connect.

    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.

  2. #32
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    Hello
    We had Dad over for Christmas.
    Within 3 days he has found it nearly impossible to climb the stirs. Last week he was fine. Yesterday he was unable to come down the stirs, so he came down on his bottom ( which hurts him as he is only bones) he also started very loud gulping and aome trouble being unable to cough up stuff. He has not slept for 3 days due to weak cough during the night. This seems very quick deterioration and will be contacting his mnd nurse. Is this a typical deterioration, hes also very emotionl t times, he never used to be.
    Cheers for any reploes

  3. #33
    Forum Member nunhead_man's Avatar
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    Hi Coco

    So sorry to hear what you are going through.

    Everyone's MND is different - what seems quick to you will be slow for others - but sudden obvious changes can be very scary.

    Are the stairs at your (?) house different to the ones at his place or do you mean he could go up and down stairs at your place last week? Slight changes - e.g. stair width, bannister height can make all the difference.

    MND nurse ASAP if you can re the lack of sleep etc - that will not do anyone any good.

    Others who have progressed further than me will help re the physical stuff but facing your end in an MDN way is enough to make anyone emotional - scared, angry sad etc - the whole nine yards

    Love

    Andy

  4. #34
    Forum Member Ellie's Avatar
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    Hi Coco,

    I'm sorry that your dad has progressed in the last week, it must be hard on you all.

    If he isn't sleeping well, he just won't have the energy to push himself physically or emotionally. And, to compound things, because he has lost so much weight, he doesn't have fat reserves to draw on for a bit of oomph (energy) All of this makes daily tasks more difficult and speeds up progression.

    I don't know if a BiPAP machine, to help with his breathing, has been discussed with him? This may help with the gulping. Morphine (not the patches he was on before) relaxes breathing, making him more comfortable, but usually BiPAP use is the first port of call. A Cough Assist machine will help him to cough up secretions.

    His MND Nurse will be able to give tailored solutions for him, having assessed him face to face.

    All the best,
    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  5. #35
    Forum Member Terry's Avatar
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    Hi Coco;

    Not sleeping very well is probably the cause of his other problems.

    In some Mnd people there emotions get mixed up and they laugh when they should be sad and/or cry when they should be happy. Mixed with this is an inability to control and limit them. I have this but am not depressed.

    If Dad has the above problems then they can normally be controlled with an SSRI drug like citalopram, this is also another anti depressant drug so make sure his doctor is well aware.

    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. #36
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    Thank you all so much! The support you provide is amazing
    Thankyou

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