Coughing - any ideas for managing?

[Helen T]

Hi, my dad was diagnosed last November and things are moving fairly quickly. We are adapting his house and managing most things ok, but finding the deterioration of his speech one of the most difficult things. He is still able to speak, albeit with a slur and slowly. But the most frustrating thing for him is a cough that just keeps coming and makes what is already a difficult task, even harder. It was one of the first symptoms we noticed last year - a persistent cough (only when he speaks). Does anyone have any ideas for remedies or techniques for managing or easing it at all? His consultant said she has seen it before but it’s not the most common, and she had no suggestions unfortunately.
If anyone has any experience or ideas, I would be so grateful to hear them. It’s just so hard to see him struggling to speak, and the cough just feels like such a kicker on top of everything else. Thank you

[Ellie]

Helen T A warm welcome to the forum Helen, sorry for your dad's diagnosis.

Has your dad's swallow been assessed recently? If not, that's a good place to start and see if his swallow might be the culprit and the Speech and Language Therapist can see if the cough is swallow related and perhaps saliva is the issue - does he drool?

If there is no apparent reason, a small dose of Oramorph can help suppress the cough - how is his breathing, has he had a recent respiratory assessment?

Is his doctor sure it's MND related?

Sorry for all the questions!

Love Ellie.

[Helen T]

Hi Ellie, thanks for replying - and I understand all the questions… seems to be a recurring theme with MND! No obvious answers do anything and so many questions at each turn. He’s had the cough for a year now, and I think they are pretty certain it’s related (nothing else so far that’s given any possible reason, and he had scans etc en route to diagnosis). He is due to have his breathing assessed again soon, and he has previously asked his speech therapist about it, but I don’t know how much of a fuss he made about it then - he’s a retired GP and is pretty stoic and puts up with a lot before asking for help! He’s learning though. No apparent drool, though I expect it is swallow related. For a while last year (before his voice started deteriorating) he found chewing chewing gum seemed to ease it a bit, but that doesn’t seem to be working now.
Oramorph - as in morphine? I guess he could ask about that.
Helen x

[Ellie]

Hmmm, a retired GP... what's that saying about doctors making the worst patients 😏😉

There is something called 'post nasal drip' which is an irritant to the throat, causing coughing, as can inadequately swallowing saliva, which is why it is best to try figure out if either of these is to blame - ideally a barium swallowing test would be done, but an SLT can also do a good physical assessment.

Oramorph - as in morphine? I guess he could ask about that.

Yes, as in a very small dose of liquid morphine, he may not be advanced enough for this but, if the cough is impacting on his quality of life, there might be a case to even try it.. There are also meds to reduce saliva production. xx

[Claireflo]

Hi Helen T sorry to hear about your Dad. Sounds like you've been busy getting things organised.
I can't offer any suggestions about the cough I'm afraid.
I'm supporting my Dad who has bulbar onset, about 18 months after his symptoms were first noticed (slurred speech) he lost his speech almost entirely. He was diagnosed too late for voice banking however he's been provided with a lightwriter by his speech therapist. This allows him to type what he wants to say and then it speaks it for him. There are also text to speech apps that he can use on his ipad/iPhone. Whilst it's a different way of communicating I still feel like I can chat with my Dad (although I wish I had a voice message or something as a reminder of his voice as I worry my memory of it will fade over time) and he still has a voice and a way of communicating with others (although I tend to do all phone calls for him).
Hopefully the speech therapist will go through the options with your dad to enable him to look at what may suit him depending on his circumstances and arm/hand function etc.
Hope you can make some progress with the cough and receive some reassurance about future communication options.
Take care
Claire

[Jackie R]

My husband has a similar cough, he had this before he was diagnosed. No one seems to know why.

[Helen T]

Ellie - thank you so much for your suggestions. He saw his GP this morning and has now been prescribed a very small dose of oramorph to try and suppress the cough. I am really hoping it helps - it’s so frustrating for him, that to get a bit of relief would be wonderful.

Jackie R perhaps worth asking about this for your husband.

Claireflo I’m sorry you’re in the same position supporting your dad. And that his voice has already gone. We did manage to bank his voice straight after diagnosis when it was still quite good, but it’s reassuring to hear that you still feel you have a means of communicating with your dad, even without speech.

take care x

[Helen T]

Jackie R just wondering if you’ve found anything that helps with your husband’s cough. My dad’s is terrible - so frustrating, and is affecting his quality of life (which is saying something considering he can barely walk!)