Is this normal?

[Bexxy]

Hi all

Every day for the past month my husband has had a period of struggling to breathe due to mucus. He can’t cough so it’s just a rasping choking as he tries to breathe in. Sometimes it’s most of the day. Sometimes he is fine all day apart from maybe half an hour. We never know what kind of day we are getting and it can come on very suddenly and go just as quickly. There seems to be no reason for it, sometimes after eating but sometimes when he has t eaten yet, such as today.

he will use the cough assist and nebuliser but nothing really seems to make any difference. He has been on carbocisteine since having a very bad period where he was like this most of every day for weeks in October.

I’m just perturbed as this doesn’t seem consistent with other people’s experience and I don’t know what it means. Does it mean his final days are approaching? It doesn’t sound like the end of life description on mnda info sheets. I also haven’t seen anyone else describing the same thing on the forum.

All that clears it is when he eventually brings up a lot of mucus but frequently he can clear mucus and still sound the same. I don’t know if this is normal with mnd and what to do about it.

thanks for your help.

[matthew55]

Well I struggle to breath when I cough after swallowing sometimes and I cannot swallow flem as my swallow is weak.
As for the end of life that could come any night. Concentrate on the good things and enjoy the time you have. Stay Strong Matthew x

[GaryM]

I often have a period like this most days. Not quite as severe as you're describing. I find it stops me breathing in, mid breath, like something has temporarily blocked my throat. A couple of seconds later I can breathe normally. Then a couple more seconds and it's blocked again. I can cough, but it doesn't feel like it moves anything. I think in my case it's just a small blob of mucus that is stuck somewhere in my throat. The whole episode lasts about ten minutes. I don't take any meds for saliva yet, just pineapple juice twice a day and lots of hot drinks.

[Ellie]

Rebecca, maybe he can do with more proactive use of the neb and cough assist, to keep on top of the secretions. I wonder if the settings on the cough assist are robust enough for him - no harm to check in with his physio/respiratory team.

And maybe increase his water intake, add in pineapple juice and ask his GP about increasing carbocisteine dose, if necessary, and it's a good idea if his chest could be listened to in case of underlying infection.

Love Ellie.

[AndyB]

I spend most of the day with a niggly cough. I don’t have a great deal of mucus just a small amount that I spend all day trying to clear.

In the morning I use the cough assist and a fostair inhaler to loosen things up. It takes an hour or two before my cough and runny nose settle down in the morning. I’ve been taking carbosisteine for the last two or three years.

After eating I often have a bout of coughing and when I go to bed I need an hour for my coughing to settle down before I have my niv put on.

I occasionally have spells of coughing where I really struggle.

Andy

[Ellie]

AndyB Good for you Andy, having the 'oomph' needed to use an inhaler - I can't even hold my breath 😏

Given that you mention you cough after eating, I'm going to suggest that you think about using that PEG of yours - not full-time, but just to take some pressure of your swallow and respiratory muscles. Well, you didn't think I'd read that and not say anything, did you 😂😂

Love Ellie.

[AndyB]

Hi Ellie, your input is always most welcome.

To be honest, I think it may be the glass of wine (or two 🤭) that triggers the coughing when eating. I don’t think the wine would taste the same through the peg. I’m very lucky in that my throat is so far unaffected, I can still talk and still swallow.

I am having a problem with my appetite though, food just doesn’t seem to taste the same and I have to force myself to eat. I have to reassure my wife that it’s not her cooking that has deteriorated, though maybe........

Do you know if MND affects the appetite?

Love Andy x

[Ellie]

Yep Andy, wine sure catches the breath, some citrus juices too.

The usual culprits for decreased apetite in MND are lethargy, side effects of meds, constipation, slowing gut motility and, along with altered tasted in a significant number of people, getting enough calories into us can sometimes feel as if we're turkeys being fattened for Christmas 😁 So, your wife is off the hook!

Altered taste is a known side-effect of Riluzole but, even without it, ALS itself can alter taste in some people.

What fun...

Love Ellie.

[AndyB]

Thanks Ellie,

Yes, the fun never stops with MND .

x

[Deb]

Hi Andy,

My appetite has definitely decreased too. Not sure if it's the MND or having no mobility because my swallow is OK. It's ironic because I used to eat really healthily and now I need the calories its sometimes a struggle. I find eating little and often helps as I don't want big meals. I also seem to have developed certain food intolerances which started at the same time as my symptoms. Apparently this is not typical of MND but I'm not convinced it's not related.

My tastes have changed.. I've totally gone off chocolate. Whats that all about ? I seem to want salty things like chips, crisps and bacon. I was vegetarian before !

I think I might check to see if wine is still OK.
Love Debbie x

[AndyB]

Hi Debbie

I’ve had no adverse reaction to drinking wine apart from my wife accusing me of drinking ‘her wine’ ! My dietitian told me it’s good for the calories.

I’ve never been a big eater and never feel particularly hungry especially with just sitting around all day.
I definitely didn’t eat enough yesterday so it’s fillet steak and chips tonight.

I’ve taken a liking to chocolate trifle (m&s or Tesco), full of the stuff I never used to eat. Have to get the calories in somehow. 😉

Love Andy x

[Ellie]

it’s fillet steak and chips tonight.

Oh, my hearts bleeds for you 😂😂

No doubt it'll be washed down with some nice 🍷🍷

Enjoy!

[AndyB]

Oh, my hearts bleeds for you 😂😂

No doubt it'll be washed down with some nice 🍷🍷

Enjoy!

Oh! Go on then, if you insist. 🍷😂

x

[Bexxy]

Just wanted to thank everyone for your responses. Sorry for being rubbish at replying but I appreciate the responses even if I still have no answers.

[matthew55]

Bexxy have you got a suction machine? I couldn't do without mine. After it sat in a cupboard for months. 😁x