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  • DeeH
    replied
    Ellie

    Thanks for the reply, it does get interesting. He can still do the "your nuts" look and "how do you get there, from what I said"

    His twinkley eyes are still twinkley with humour, he just needs to be in his chair so I can see them.

    MMG



    The micro dot sounds good, he can't do the voice control any more. Plus with the head position (ie a bent 45 degree angle)

    Yes and No nodding is not as clear.

    We do get by. Hope his voice holds out. Yes He can still make sounds which is good, if he has kicked the foot buzzer out of reach.

    Cheers

    MND Posse

    You Folks Rock

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  • MMG
    replied
    We have got an alert button with a pager receiver which i carry around. However he now has trouble moving his feet and his hands don't work. We did try setting up to be used by his head, but had too many false alarms as he moves his head to operate his computer which he uses most of the day. He has an alarm on the computer, but not linked to the pager.

    I tend to only go upstairs or in the garden when the carers are here. And I rush in the loo...... or shower.


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  • Ellie
    replied
    Originally posted by MMG View Post
    Sometimes with great difficulty, he can make a noise to alert me, its a strange sound, but its the same noise whether it is something extremely urgent or something minor.
    Would a wireless doorbell be of any use to him/you? It's handy as the receiver can be heard around the house and the ringer is small and portable.

    I ring once for general assistance, any more than the one, people know to come *now*... I tap it with my head, could your husband move any part of his body to ring a bell? xx

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  • MMG
    replied
    Originally posted by DeeH View Post
    HI Everyone,

    How is everyone without a voice communicating, especially on the commode.

    Thomas' voice going very soft, my hearing is rubbish.

    We are getting frustrated, doing Charades

    Thanks

    Donna
    Sometimes with great difficulty, he can make a noise to alert me, its a strange sound, but its the same noise whether it is something extremely urgent or something minor. He relies heavily on his technology supplied by NHS with all sorts of magic on it, eg ability to control TV, operate fans (as he struggles to maintain temperature) access to Internet etc all controlled by a micro dot on his head) When not on his computer its difficult, guesses, yes no answers or an alphabet board.

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  • Ellie
    replied
    Originally posted by DeeH View Post
    Thomas is still trying to have long involved conversations. Like charades if I know the subject, I can guess.
    Now that's just asking for trouble 😏 😇 xx

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  • DeeH
    replied
    Ellie

    Thanks for your reply.

    We have a foot buzzer supplied by the environmental folk, Thomas just presses it and keeps his foot on it.

    I have the other buzzer in my pocket. Though I still tend to lurk in the kitchen (on the computer) just within hearing distance, if we are not in the same room.

    I know roughly what phrases are need in most situations.

    But Thomas is still trying to have long involved conversations. Like charades if I know the subject, I can guess.

    It's just on the commode when Thomas' head is down and I can't see his lips. He gets frustrated, when I say wait to you are in the chair.

    Obviously we need to sprinkle more patience.

    Thomas was a talker and the coming and going of his voice is frustrating to him.


    MND nurse coming today, have asked her about eye gaze before.


    Cheers

    Donna

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  • Ellie
    replied
    DeeH Assuming it’s not a full-blown conversation, you could have a sheet with various useful phrases on it, an alphabet sheet for when no phrases apply and a bell system if Thomas wants to call you in/get your attention.

    The bell could be a wireless doorbell which he could press with his foot or hand or any place he can move - I use my head - and you can get ones with a relatively large target area to press, rather than just a small button to press. A bicycle bell or horn works for some but the wireless doorbell can be heard throughout the house, so you don’t need to lurk nearby. xx

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  • DeeH
    replied
    HI Everyone,

    How is everyone without a voice communicating, especially on the commode.

    Thomas' voice going very soft, my hearing is rubbish.

    We are getting frustrated, doing Charades

    Thanks

    Donna

    Leave a comment:


  • MarsyasWeeps
    replied
    Well those replies would explain a few things about my "voice" needing to make the strangest sounds.

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  • MMG
    replied
    My husband makes a lot of moaning / groaning noises at times. Gets worse just after being put to bed but still awake. He has recently started yawning loudly too, even when not tired. His speech has recently gone.

    I agree entirely with Lynda about the dripping tap!!

    Leave a comment:


  • matthew55
    replied
    Can you not day feed? I'm thinking of trying my backpack.😁x

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  • Beemer
    replied
    I sleep in another room, as my wife likes to stretch out and traps my arm/shoulder and I cant move. She snores too.

    Leave a comment:


  • RenRieson
    replied
    My mum makes lots of noises and she gets really embarrassed when it happens in public.

    Leave a comment:


  • Lynda
    replied
    I feel relieved to hear that this is not uncommon. It doesn’t distress him and he has no control over it, but I do find it irritating! Its like a dripping tap that once you hear it, its difficult to ignore. He has no breathing problems at the moment. Thank you for putting my mind to rest. I feel an amazon delivery of ear plugs - between his noises and the whirring of the feeding pump - I’m not getting much sleep.
    Lynda x

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  • Ellie
    replied
    Hi Lynda,

    Is his breathing OK?

    It's very common to grunt and groan once the voice goes - doesn't matter if one was bulbar or spinal onset - but for it to be 24/7 and with almost every breath, is less so. I would mention it to his Doctor, to be on the safe side.

    Has he told you why he thinks it happens? Does it distress him?

    Take care.

    Love Ellie.

    Leave a comment:

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