Noises

[Lynda]

My husband is bulbar onset. No speech at all now but he is constantly making funny noises. Moaning and groaning almost with every breath, day and night! Is this common?

[matthew55]

Hello, I am mute because of Bulbar and I make all kinds of odd noises 😃x

[Lizzie]

Hi Lynda. I too have bulbar onset and wake myself up at night making weird noises ! It also happens when I bend over, clean my teeth, and sometimes when I exhale. It’s fascinating . In fact sometimes it takes me by surprise and I turn around thinking it’s my husband, but I can’t blame him, it’s definitely me😊 x

[Ellie]

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.

[Lynda]

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

[RenRieson]

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

[Beemer]

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

[matthew55]

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

[MMG]

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!!

[MarsyasWeeps]

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

[DeeH]

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

[Ellie]

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

[DeeH]

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

[Ellie]

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

[MMG]

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.