Larry has had an awful sounding cough almost all day for the past week. It is loud and sounds like a car engine trying to start but not able to, just turning over. It is a very scary sound and I would think it would hurt him although he says it doesn’t. His doctor says his lungs are clear. I know PSP brings swallowing issues. He does drink thickened liquids now. What is the next step? Will he cough like this for a long while? How will we know if he aspirates?
The Cough: Larry has had an awful sounding... - PSP Association
My husband Bob has a similar cough. We believe it is a build up saliva due to him not swelling as often now due to the PSP. We had a visit from the Speech and Language Therapist this week, who explained that we all make approx 2 pints of saliva a day, our swallowing mechanism enables us to cope with. PSP does not help move the saliva. It was suggested that drinking a little and often may help especially pineapple juice. Neurologist also mentioned pineapple as it breaks the saliva down. We are monitoring it as we are worried about aspirating. Bob has choked on saliva as well as food & drink. The sound of the cough is quite scary too. Bob also has thickeners in his drinks and eats softer and smaller food.
Hope this info helps sorry if you have heard it before.
Pineapple juice or dark grape juice can help. The suction machine was very good for my guy when he was producing lots of gluey saliva.
I don't think you'll know about aspiration unless it turns into pneumonia.
I agree that you will know when aspiration goes further than just choking. High temps etc will alert you.
Marie, does this coughing and choking go on for years? I hate to sound like I want a date but just don’t know what to expect. Weeks, months, years?
Gers coughing and choking was going on for years and getting worse. Did all the thickeners and pureed food but as time went on and gers mouth started to close and putting every different type of spoon and straw in became ever more difficult i enquired about a peg and after a meeting with a consultant and speech therapist in january he had one fitted by RIG insertion in february. That is externally inwards not via mouth because it was nearly closed by then. The best thing we did. It kept him healthy for 7 months until he got aspiration pneumonia.
Not sure if this is any good to you but as everyone is different it may help.
Atropine eye drops under the tongue worked perfectly for a year for drying excess saliva during the day.
I had not heard about the Atropine either. Thanks so much!
There are lots of posts about it in the archive. I learned about it here, so was able to talk to the doctors about it. This site has helped me so much!
The Atropine drops do work if you can get them prescribed. Our GP felt he could not take the risk of letting Terry have them as he did not have 'sufficient proof that they were safe to use in this context' and therefore we have to go back to the palliative care consultant who issues a hospital prescription each time we run out. All well and good but a hassle to get them filled as normal pharmacies will not do them. Saying that it has been worth it as the drops do reduce the excess saliva at the present time.
Same with us. GP reluctant, but after the palliative care doctor initially prescribed, the GP went along. I had to push the pharmacy to keep a supply, but they cooperated well in the end and once went to some lengths to get a bottle when we ran out and the nearest branches didn't have it. It was worth it. The glycopyrrolate was good when, after more than a year, the atropine ceased to work.
What does the pineapple or grape juice do?
Bobaroony says it helps to break down the saliva making it easier to swallow.
I am going to try the pineapple juice at Jim's noon meal today. It's like he looks at the glass of water and starts to choke. There's also a girgleing sound which I suppose is excess liquid. I've counted 7 swallows he takes to down a small teaspoon of pureed peaches. Looking forward to the PEG tube - his next option in living with this dreadful disease. Thanks for the tip.
Atropine definitely helped my mum with this problem
Having a PEG only helps with not choking n food, drink and meds not with swallowing saliva and phlegm so doesn't solve everything. I hadn't heard of the eye drops or pineapple juice either. Anything worth a try. My Mum has consistently refused a PEG and is now too weak to undergo the procedure so anything that may ease the build up of saliva , food etc is so helpful, Steph x
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