Any one having coughing difficulties? - PSP Association

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Any one having coughing difficulties?

showaddy profile image
20 Replies

Steve has lots of coughing episodes (not just when eating and drinking). There is white phlem and he takes ages getting it up. He has had this cough for the last 7 months and seems to be getting worse. he has had a chest x ray and this shows no problems and the community matron says as long as the phlem is white there is nothing to worry about - but I do!! Has anyone experienced anything like this? Any help and advice would be appreciated as its spoiling sleep as well as being very disruptive during the day and tiring him.

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showaddy
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20 Replies
abirke profile image
abirke

Does he have PSP? I can only suggest lots of water and minimize phlegm producing foods such as dairy especially before bed. You may take him to a respritory therapist who works with exact situation

Good Luck

AVB

showaddy profile image
showaddy in reply toabirke

Thank you for this - def worth a try. Steve is at least 4 years into PSP and I think he is in the advanced stage now.

Amilazy profile image
Amilazy

My wife, who has PSP, gets coughing episodes regularly combined with a lot of saliva. This can lead to chokes frightening but she seems be able to cope. Her swallow reflex went early this year and she was coughing a lot. The speech therapist got her a medication called Glycopyrronium bromide. It reduced the saliva and cough, over the last 6 months the medication has lost some of its effectiveness and so she is coughing more but not as much as earlier,yet. Like your community nurse said check the flem colour, but as long as the patient is mobile it seems as though aspiration is limited and as with a healthy person a cough actually clears the airway. The problem comes if the patient becomes more sedentary and a cough may not clear aspiration which can lead to lung infections, hence the flem colour check. Agree with AVB, reduce or cut out dairy drinks as these lead to thickened saliva that is difficult to swallow. good luck and best wishes Tim

showaddy profile image
showaddy in reply toAmilazy

Thank you so much for your advice. The medication even though it may only be short term sounds interesting and worth a try. Steve sits all day in his chair as unable to walk so he is very sedentary. No lung infections as yet but this wonderful site helps so much. First time I have asked a question and informative replies back. Wonderful

GillJan profile image
GillJan in reply toshowaddy

Yes thanks Tim, another note gone in the PSP info book I keep, you never know when other's earlier advice will have an impact on our situation.

cabbagecottage profile image
cabbagecottage

like everyone has said reduce fair food . Biscuits cake can cause cough . maybe you could thinking his drinks . thick and Easy !!

Even any gravies or milk on cereal etc.

john has had it really bad .xhest is cleat with x Ray . But I did worry . In his case he was awful at night , couldn't clear phlegm , it's the build up of saliva . I use to have to manually cleat it from his mouth for him .

since stopping the Neupro patch it is much better ..

ask your Doctor pleas don't stop any meds on what I say but I have reduced and stopped a few meds after agreeing with Consultant .

showaddy profile image
showaddy in reply tocabbagecottage

Thank you for your reply. He attends the hospice once a week and next week they will be trying thickener so will be interesting to see if this helps. I hate the cough at night most of all. Steve hasn't had any medication for PSP at all so all to try for. Thank you for your reply

cabbagecottage profile image
cabbagecottage in reply toshowaddy

Your more than welcome. It's not the meds then. Good luck Take care if they give u meds to dry the mouth up it did cause John to have hallucination s. BUt , he is very very sensitive to a lot of meds

NannaB profile image
NannaB

My husband takes the same medication as Tim's wife to help reduce saliva. He still has lots though. He has some days or nights when he coughs all the time and then a few days relatively quiet. He can't always cough up what needs to come up and makes a noise I liken to a rutting deer. Very loud and low. I told him I'm sure the deer from the local woods will return the call one day and pay him a visit. He coughs up very thick phlegm and I have to pull it out of his mouth ( Yuk!). There is a pump available and the Hospice have said they will investigate but I'm still waiting.

As others have said, cut down on milky drinks. Cranberry juice seems to help a bit but all my husbands drinks have to be thickened. He can't drink water.

He sleeps with his pillow raised and on his side with pillows behind him to stop him rolling on his back, although he does manage to still. His pillow is always soaked in the morning and the towel covering the pillow.

I've seen films of folk with cystic fibrosis having their backs patted to losen the phlegm. When Colin is having problems I pull him forward in his chair and with two hands, pat his back on both sides very quickly. After a few minutes, he has always managed to cough something up. I've never been told to do this and haven't mentioned it to professionals so it would probably be frowned upon but as long as it works and doesn't hurt him, I'll continue.

Colin has had a swallowing X-ray which showed that no food is getting into his lungs it is just natural secretions he is trying to get rid of.

It is horrible to see loved ones suffering like this but it is part of the condition and as long as the phlegm comes up and looks normal, as the community nurse said, try not to worry, not easy I know.

Nanna B

cabbagecottage profile image
cabbagecottage in reply toNannaB

That's right Nanna , I asked about having Physio to clear it but they refused it wouldn't work . Jihn can still eat some and I have found giving him a fish men's friend to suck helps the cough and clears it a little .

it was the worse thing for John you cannot go to sleep yourself u too this settles can you. I don't know really why John s suddenly improved except for the patch .stopping

showaddy profile image
showaddy

Thank you Nanna B, you have made me feel better. I also pat or rub his back which seems to help. I mention his cough a lot to medical people but no one says anything at all as to how to help. I have taken a lot from the replies and thank each and every one of you. Its nice to feel I am not alone. I will have more courage now to ask for advice if I have any other worries. I have read the questions and answers for the last 2 years and everyone speaks sense. I won't hesitate next time to ask

GillJan profile image
GillJan

Yes, this is something Malc has been suffering with more regularity. It is somewhat upsetting as he can go quite purple in the face. Malc found initially that if he sucked a menthol Tune lozenge it helped to calm the cough down. But any boiled sweet seems to do the same. Malc has come to realise that he gets a slight dryness and tickle sensation before the cough starts so, whilst it doesn't stop the cough, we have noted it is less severe and gives us both less worry - of course with PSP I presume there will come a point it won't work as well, or at all. All the best.

showaddy profile image
showaddy in reply toGillJan

Thank you so much for your reply - its appreciated. Steve tried throat and chest sweets and meltus but now both don't work unfortunately. The cough is getting really severe now but I think we may have to live with it. I am going to ask the doctor for the glycopyrronium bromide as I looked it up on line and there are no side effects so anything is worth trying (kindly recommended earlier). We cant lose much anyway. Tried chemist direct but its a prescription only medication. Thank you for your good wishes

Kelly55 profile image
Kelly55

My mum also tends to choke and cough seemingly on nothing. Sometimes it's her saliva gurgling and choking her and I always have lots of tissues nearby so she can wipe the thick phlegm out of her mouth. We also use atropine drops under the tongue to dry up excess saliva and hyoscine patches. But I'm concerned they may cause vivid bad dreams and the patches cause a rash. I also tap mums back to help shift anything g as she has had chest x rays and spirometry but nothing untoward. Plus her breathing can be very laboured. I also am a big fan of making ginger and lemon tea (ready made teabags) and adding lemon juice and honey, this seems to help as does pineapple or papaya juice. Mum has thickening powder in all her drinks already but the catarrh can also be an issue. We also have a saline nebuliser we got off the OT and physio. So those things may help. As well as elevated head at bedtime etc. hope some of this provides relief x

showaddy profile image
showaddy in reply toKelly55

Wow, such a lot of great advice, thank you. Steve has a community bed and does sleep with his head up and his feet up as well. He will be trying the thickener this week on his hospice visit so fingers crossed this may help as well. I am afraid all the thick phlegm makes me feel sick when I see it so goodness knows what it must feel like in his mouth. He has bad dreams and hallucinations sometimes so I don't think I will try the drops but thank you anyway. The tea sounds good as does the pineapple juice - he would like both of them I am sure. The OT seems to be the next point of call. Thank you for helping. x

Kelly55 profile image
Kelly55 in reply toshowaddy

No worries! We are all battling this together, and this forum is a god send. The ginger and lemon tea bags are easy to get and mum likes them. But I add extra lemon juice and honey to help with catarrh/secretions. I think it helps! You can also and brews/tinctures out of fresh ginger but tbh I never mastered that! And yes definitely speak to your OT about nebuliser as that helps break up any thickness in throat so it can be coughed out or swallowed. Hope these tips do help out! Take care x

showaddy profile image
showaddy in reply toKelly55

Just had a brew up with the ingredients suggested. Not sure if it will work but he deemed it delicious! So thank you as finding something to drink which is different from coffee is wonderful x

Hi showaddy, I agree with Tim. My mum had a constant cough, even when peg fed, due to the build up of saliva and being sedentary. Mum had scopoderm patches to dry up saliva, which did help but....the side effect of long term use was blisters where patches were put. We also had a suction machine to clear mum's mouth.

Thought are with you both, Christine x

showaddy profile image
showaddy in reply to

Thank you for your reply and best wishes. I am trying everything I can and appreciate all the replies. It feels nice to know I am not alone. Pauline x

arwenmark profile image
arwenmark

My husband was diagnosed with PD in Feb. 2012, he has had coughing and chest pain almost since that time, and it gets worse. They have checked out the usual reasons for cough and say they can't find a reason.

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