Build-UK Chat Forums

[Rachelg]

Hi All

Throughout Marks journey with MND so far his worst ever problem has been coughing, choking and stickiness, making his life miserable.

Just over a week ago Mark started coughing and couldn't stop - he was constantly exhausted and feeling dreadful so I spoke to Oxford MND centre about it and they asked us to go up.

This was the solution - use a cough assist machine three times a day and take 5ml of Codeine Linctus four times a day.

Apparently rarely in some bulbar cases the reflex trigger in the throat doesn't switch off like it should and therefore once coughing starts it won't stop. Codeine stops the cough and the cough assist machine forces a cough to bring up secretions.

The result is that Mark is no longer coughing, the choking feeling has gone and the stickiness has been reduced. He is not constantly suctioning either. He also loves the cough assist machine because it forces Mark to take a really deep breath. He says he realises now how long it has been since he was able to take such a deep breath and after a few goes on it Mark says he feels like hes been for a run.

It is truly amazing - such a simple medicine has made a massive difference to Marks life.

If anyone else is constantly battling like Mark was maybe Codeine is worth a try.

RACHEL

[melqart]

Hi Rachel

Can you tell me if it was hard to get a cough assist machine?

My mother often chokes and as you know it's a really scary experience for everyone. At one point we had to call the emergency doctor because she just doesn't have the breath to cough and we were close to panicking. On the phone they asked if we had a cough assist and that was the first we had heard of it. They also asked if we had a nebuliser which luckily we did from way back before she went on to oxygen and this did the trick, opening her airways enough to let her breathe. (Thank goodness the NHS ignored all our attempts to give it back )
Is a cough assist suitable for everyone and is it easy to use? The MND nurse is coming on Wednesday and I'd be grateful to have some info before I ask her about it.

Thanks

Jax

[Rachelg]

Hi Jax

First of all it seemed impossible to get a cough assist machine locally there just wern't any in Somerset, Marks Neuro matron had been trying for a while. As Marks Neurologist is in Oxford we go to them if we get no joy locally. They have them there infact they had 3 brand new boxed ones, one of which we took on with us. So I am guessing its down to area.

Mark did have a nebuliser a while ago but said it made him feel sick so we gave up on that.

As far as ease of use with the cough assist, it really is a piece of cake. You set it first to inhale and do three inhales then on the third one after inhale switch it to exhale which brings up the secretions. It really is that basic and training me and Mark on how to operate it took minutes. I am not sure about its suitability for everyone but can't think of a reason why it wouldn't be suitable. like I said Mark feels great after using it, like he has taken really good breaths.

I do hope you are able to at least get one to try. The cough assist along with the codeine has made a tremendous difference to the quality of Marks life.

Good luck
RACHEL

[Jemma]

Hi Rachel

That sounds exactly what my mum needs. She is extremley fed up with constant secretions that she just cant shift, they are organising a nebulizer for her but this sounds more like what she needs.
Is the cough assist machine easy to use?

Thanks

Jemma

[Rachelg]

Hi jemma

As I put in my post to Jax - it is the simplest thing in the world to use.

I was just talking to Mark about it and he is sure that he doesn't drool so much since he has been on the linctus/cough assist. He thinks that the codeine has dried him up a bit though it is not really for that use its literally just to stop the cough.

Mark in conjunction with the codeine and cough machine is taking Carbocisteine syrup - 20ml 4 x day, amitriptyline 15ml at night and has had botox but reckons the botox didn't work.

He used to have to sit with the suction machine next to him and constantly suction on and off all day. Well today so far Mark has only suctioned twice. The corners of his mouth are not so sore because the drooling seems to have slowed and yep no cough at all.

It may just be luck (and if it is please god let the luck continue) but finally after months and months of struggling with coughing, drooling and sticky glue at the back of his throat - its under control

For anyone who has suffered with the bulbar issues they will know how fantastic it is for Mark to have this under control. For now Mark for the first time in months feels his worst symptoms are under control. Blimey a few days ago we went shopping in Glasgow for about 6 hours. before the new meds and cough machine we were lucky if Mark could walk round town for 20 minutes without being exhausted from coughing.

Jemma, Mark did have a nebuliser but the saltiness of it made him feel very sick so just something to watch out for.

RACHEL

[Wayne]

Jax it's a postcode lottery situation regarding cough assist machines, Bluepete had to buy his own & was fortunate to have a local brewery give a large donation towards its purchase when he held fundraising events on premise he donated it to his local hospice when he no longer needed it, which he duly did.

Suitability is down to the individual peson & not fighting against its actions I believe.

Wayne.
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All of us could take a lesson from the weather.....It pays no attention to criticism.
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"Be yourself because everyone else is taken"

[simonc]

Hi Racheal

\we tried out a cough assist machine but due to Sue's cough being very weak she couldnt take a big enough breath even with the machine helping her to help her cough properly or good enough to move her secretions.

We are now trying beta blockers to help control the secretions only juststarted to will up date as to weather it helps or not.

As for availability Papworth had them to give out.

Simon

[melqart]

Thanks everyone. It might not be suitable as her cough is very weak but the MND nurse is coming this week so I can ask about it

Jax