Coughing, pALS with cold

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Cherise77

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Hi everyone,

I’m looking for some advice for my Dad. He’s had ALS for 5 years now but just recently been having trouble with coughing.

For a couple weeks now he’s been having coughing episodes in the middle of the night and in the last few days the episodes are happening through the day as well. His FVC is 50% so his coughs are weak and it takes him 30 minutes or more to cough up what is bothering him.

He went to his doctor today and he said it’s a virus and he should drink fluids and rest. This doctor is a GP and not a neurologist so I’m concerned that he’s giving him advice for an average patient and not an ALS patient.

My Mom tried the cough assist machine last night but said it made my Dad cough for 2 hours after and was a very unpleasant experience.

Has anyone had similar issues with coughing or have advice for when your pALS gets a cold?

Thank you very much for any guidance you can provide. We really appreciate this forum and read through the threads often for advice.
 

lgelb

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Hi Cherise, sorry to hear about your dad.

Does he really have a cold? Is his nose stuffy? Is it mucus he's coughing up? Does he use a BiPAP? At 50% FVC, he should have one, and the settings can usually be adjusted to reduce coughing. Let me know and I can help.

Does he have a suction machine?

Hydration, warm liquids, Alka Seltzer, cough syrup, papaya/pineapple juice, soda, avoiding dairy, kernels, grains, seeds, etc. may all help. Thinning the gunk makes it easier to cough up and more likely to not need to be coughed up, at the same time. I would check the furnace filters, consider a nasal steroid at night, and try to remove any possible allergens, including cleaning products, from the home.
 
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Cherise77

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Loved one DX
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Thank you very much for your quick response. Lots of great tips to try!

He does use a BiPap at night. I’ll ask my Mom to adjust the settings to reduce coughing.
His nose is not stuffy and really the only symptoms is coughing which does worry me that it might be the ALS progression and not a cold.
He does cough up mucus and until he can get the mucus up the coughing doesn’t stop.

He has a suction machine but we haven’t tried it yet only the cough assist.
 

lgelb

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Glad to hear he has BiPAP. I would also make sure his machine filters, hoses and mask are clean.

As far as settings, when he starts coughing, it's best to turn off the backup rate (which he probably doesn't need at all anyway) and switch from a target volume mode (turn AVAPS off if a Trilogy, lmk if he has a different machine) to fixed IPAP/EPAP, starting with IPAP of 10 and EPAP of 4 and adjusting IPAP from there.

The CoughAssist can do more harm than good for some. You can try reducing its settings as well, but if it doesn't work out, there are other options.
 
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