My husband coughed and coughed until he was red in the face this evening. He had just finished a cup of tea. Luckily my daughter arrived then as she was taking me home. She suggested it might be the milk in the tea as he manages water and juice most if the time. He went off tea for almost a month and I wonder if he was aware it was making him choke. Any ideas anyone?
We have asked that if he wants tea he has it without milk as my daughter is convinced it is causing phlem to build up. Goodness knows what would have happened if he had been alone this evening. Not sure he would have rung the bell.
Marie_14
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Marie_14
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My husband dose the same thing , it's the **** disease. When he start's to cough real bad Im pretty much yelling at him to breath through his nose so I know he has a open airway. It's tuff to watch. Hang in.
Thickeners do help but they don't eradicate the problem which is their inability, or strength, to clear their own phlegm. We're doing it all the time albeit unconsciously, so I'm not sure if any one food or drink is completely to blame. Not much help. Hang in there. Marie
My mum was coughing a lot as well on drinks so we started thickening all liquids. Thank God it has made as difference, we have had to increase the thickener as PSP progresses. The coughing episodes are horrible to watch. Like everything else about PSP it makes you feel so helpless. Go to your GP immediately, you should definitely see a difference.
Tried that until the choking started again. Then used a straw. SALT woman was not happy but it worked for quite a while. Now she is adamant he has to use the expensive cup. Had to buy two...one for cold drinks one for tea! Now that is causing problems. So will try black tea or soya milk or lactose free milk. Anything is better than watch him choke. Thanks for your suggestion. Anything that might work is worth a try?
If you are not already on their books, get an urgent referral to a Speech and Language therapist (SALT). They will be able to assess your husbands swallowing ability and make recommendations which will almost certainly involve thickening all liquids. They will also be able to teach some techniques for safer swallowing.
I. was coughing and choking frequently whenever I drank or ate,but thankfully it has really decreased in occurance, I almost always drink using a large bore straw (meant for milkshakes) and always sit upright when I eat or drink. I went to a speech therapist who evaluated how I swallowed. It is important to tuck your chin down whenever you are eating or drinking. When you hold your chin up you open your airway, leading to coughing episodes. This really helps. I love plain old milk and this doesn't even make me cough any more. Good luck. Love, Mary B
I am 70 yards old and was diagnosed 1 1|2 years ago.
Along with adding a thickener to thin liquids, my husband uses your techniques as well with success. Also, he says when he concentrates on swallowing, not taking too big an amount, he does not cough. Staying mindful, which is tough to do all the time. He does not yet experience any phlegm.
I agree that it is very important to stay mindful when you eat or drink. Just when I think I am doing well, my brain acts up! I frequently see a piece of lint or whatever on the floor and will try to pick it up.....which leads to me toppling over. I was staying at my sons house and he caught me as I was going over. He got plenty angry at me. He just can't understand why I feel the need to pick it up. My only answer is "my brain makes me do it." Oh, how I love PSP! Mary B
Nice to hear from you. Don't think I have before? You are a doing a great job by the sound like of things. Long may it continue.
My husband really switched off when he was told what it might be. You notice the might? Anyway I have had to read up what I can on PSP and everything else neurological. He is reluctant to make any decisions about anything.
He was like this when diagnosed with Leukaemia too. That is a rare one as well. He didn't want to know the prognosis. We actually didn't know for sure until he went for a second opinion and they took him off the chemo tablets and put him on something else. He reacted very well to them. Went back to first doctor who totally lost it with my husband and told him :"they" only last about 3 months with this and he should be dead by now! That happened last year. We have been through the mill as a few months later he had to see the Neurologist!
It feels like a nightmare all of this? My husband is 72. Leukaemia diagnosis when he was 69. He must have had both for ages I think.
Good luck to you and keep up the god work and stay in touch?
Nice to hear from you as it is indeed to hear from everyone on here. Have you posted before? You seem to be doing really well with the choking pretty much under control. Very well done!
My husband doesn't want to know anything about PSP. So I have had to read it all, and my kids are pretending he will get well again. So if I mention anything I am told by my daughter I am being negative. She who is going away tomorrow on holiday! Maybe she is right to forget us but so has everyone else.
Friends deserted us when he was told he had Leukaemia. Maybe they thought they could catch it. They know about the PSP but don't even ring me to see if we are alright. I feel really abandoned by everyone. I suppose when the chips are down we are all alone? I never believed that would happen though. Silly me?
God that sounds bitter and I am not a bitter person I promise. My husband is 72. He was diagnosed with a rare Leukaemia when he was 69. Only told the prognosis for that when he was 71. He didn't want to know it but after he had a second opinion the consultant lost it and told him the prognosis was bad and "they" usually only last 3 months and he should be dead by now. Guess he has had a laugh to think he now has PSP.
So we were coming to terms with all of that and now we are where we are. Not been a good few years so I am franticall trying to find out what we should,/not be doing. Some of it is going right over my head to be honest. I think I am losing the plot at times. So it's great to hear from someone who has improved their condition. Thank you for sharing that. It won't happen to my husband but I will try to improve his drinking. Maybe if I focus on one thing at a time I might make some progress?
We did used to find milk seemed to cause more phlegm and D had a dairy-free diet for quite a while. He had soya milk instead of cows milk. It seemed to help for a while. It really depends if the coughing is due to build up of phlegm or due to aspiration of the liquid. If it's the latter, thickener will help.
Our SALT was skeptical of the milk/phlegm link, but in any case milk wouldn't cause an immediate reaction, as you describe. Aspiration of liquid due to deteriorating swallow reflex affects almost everyone with psp. Getting a barium swallow study is key. It has helped us immensely. The exercises made my guy more mindful when he swallows, he said. He is more likely to choke when distracted, as with company, unfortunately. It upsets people to see it, but it passes. He raises his hands above his head when he can't breathe, and that helps. Good luck, ec
My guy has milk on cereal every morning. The atropine he takes has stopped the nighttime phlegm problem beautifully, and the suction machine is gathering dust!
Guess everyone is different Easterncedar? I mentioned the atropine to the doctor and he looked at me as though I were mad! How did you manage to persuade your doctor to prescribe it?
His GP was originally reluctant, said it was given to patients at end of life for drooling, BUT then the doctor in charge of his palliative care team through the VA said we should try it and he talked to the GP.
Important point: The atropine wasn't for the daily aspiration-type choking that you describe, it was for the nighttime production of really gooey, gluey, ropey phlegm that was suffocating him, and that we were suctioning out every few minutes for two hours after bed time.
For choking on food and liquid, the SALT barium study (he has had it three times) and exercises and mindfulness have been key to his comfort. He does not drink thickened liquids and eats a normal diet. In contrast, abirke's husband had a study that showed his swallow reflex was gone, and so he had a PEG fitted very early in the progression of his disease. No two people are affected the same way.
We don't have a palliative care team! In fact we don't have a team if any kind. We just have individuals who dip in and out of our lives! We don't see them for ages then they ring up want to see us so we sit and listen to them talk about something they have no idea about! Now with my husband in the Care Home I apparently don't exist anymore. I never hear a thing and most of them won't visit him because he is too far away!
At last they are beginning to recognise veterans here. However to the best of my knowledge they don't get priority care. I saw to the best of my knowledge because nobody tells you anything here. My husband was in the forces and saw active service but you wouldn't think so. Maybe I should ask the question? I think I know the answer before I ask however.
Yes we are. We have the NHS which was great but is facing brutal cuts and the same with social care which is provided by the council. They too are facing huge cuts to their budgets and have a big black hole to fill. The only way is to increase taxes but nobody wants that. Until they need the services which we all need eventually? Unless you happen to have lots of money that is.
Ain't that the way the world over. But there are millions worse off, and I'm pretty sure I didn't deserve the good fortune I had to be born where and who I am. --- argh--- More platitudes! Sorry. I am stuck in that, I guess. My coping mechanism.
My husband produces that too. After he had his choking and coughing episode he was producing phlem which was stringy and I got him to spit it into a tissue. He was struggling to do that but eventually got rid of it. I wonder is that why he ended up with pneumonia? Need to get a doctor who understands about the eye drops. Maybe I didn't explain it very well. He started to choke when drinking but I got him to slow down and then he was alright. Then a few minutes later he had this choking which was stringy phlem.Is it possible to have both at the same time?
Possible, yes. We have both. The neurologist wanted to do Botox in the salivary glands for the drooling, but when the appointments got confused I dropped it, and I'm glad.
Hey Marie, yes, I've been told that milk is not good for 'throaty conditions' and can give problems with coughing etc. Clear liquids are better. You can but try. Jingles243 x
My husband also chokes mainly when drinking water. Since I have been giving him milk instead, the choking has virtually gone. It seems very strange to choke on water but not food but presumably this is why thickeners are added to drinks to make the swollowing mechanism think it's working on food. It's difficult to watch someone choking on liquid as there doesn't seem much can be done to help them - or is there? Does anyone know? Hope everyone has a good day.
Milk due to the way its processed can make people cough my grand dad and aunt cannot have milk due to the hurendous Coughing. Try a milk substitute i.e soya or lacto free.
Thank you all for your comments. My husband was given thickener by the SALT woman but he can't use it in drinks. It makes him feel sick. I can see why too! Someone described it as looking like wallpaper paste and that is exactly right. Having a cup of tea with it is a nightmare. I have tried everything with it. Putting it in first/last etc. Makes no difference.
He had his swallow tested about 3 months ago and they were pleased apart from when he swallowed a drink. He was holding the first gulp in his mouth then taking another one! He can no longer do that as I bought an expensive beaker they advised. However now he is struggling with tea. It was my daughter who thought of the link with milk. We asked him if he would drink it black for now but no idea if he will although he said he would. He might have forgotten that by today.
So it looks like mixed opinions on the milk. Will maybe try black tea and see what happens if that doesn't work use soya or lactose free.
Thanks for your suggestions. Especially the chin one! He does hold his chin up rather than tucking it in. If there is nobody to help him he will maybe forget to do that? Can only try and see how it goes. I am wondering if a different thickener might help too. However as the NHS pay for the current one Thick and Easy can't see them paying for one which might cost more? So will have a look in town to see if I see a different one. Or better still online!
Some folks here swear by pineapple or concord grape juice as a help with the phlegm. We tried, maybe it helped, but not so dramatically that it was worth the effort of getting it down. Every patient responds so differently. I have rarely seen this more clearly illustrated as in the responses here. I can only wish you luck sorting through all this very well meant advice. Peace, ec
Have heard about pineapple but can't remember where! I don't think he would eat it. Not his favourite. If you had said fed him green grapes we would be OK! He has an obsession about them but they must be green! He had some red vwine when it was our Anniversary and I was amazed. No problems!
Marie_14, he probably needs a thickener for liquids. You can buy it in your local drug store. My hubby is on it and it helps a lot. Part of the progression of PSP.He also should be assessed by a speech therapist.
He can't drink anything with thickener in it. Have tried it. Unless I try a different one? His speech therapist tells him he has to drink out of the cup I had to buy from him. No advice apart from that. Spoke to a nurse today and she thinks he needs to see a dietician although he can eat alright. Have noticed he is starting to stuff food into his mouth though! Another problem I suppose?
My sister has started the uncontrollable coughing and choking. This has happened while eating and drinking and horrors, her own saliva. The last 2 times scared the absolute hell out of me and her. She seems to do ok with water and hot tea, one meant for sore throats with honey and by taking honey by spoon. Certain foods will set her off. Grapes, candy, other foods with chocolate are definite triggers. However, her shoveling food certainly doesn't help, no matter how hard I try to get her to stop, this blasted disease "makes" her do this. Damnedest thing I ever saw. We'll try the chin down approach and I'll go and buy some thickener today. Hopefully, this will help. She had 2 episodes yesterday and one happened while at the neurologost's office. He ordered a swallow test and brought up the dreaded PEG tube. I think it still might be early yet, before doing this. But, what do I know.
Thank you again, everybody, for all of your sharing of information.
Hi, we were told by a SALT nurse not to use straws as it throws the liquid to the back of throat too quickly. We were also told to get a mug with a controlled limiter of 5cc or10 cc at a time, which we brought, but expensive (£52) the UK Company that supplies is call Kapitex, item is made in China of course so someone making a profit at our expense. I have found that it is best not to talk to my wife when feeding her drinks or food and certainly I don't say anything funny as she concentrates on swallowing or else I am forced to share as it splutters over me!! Nurses are preparing us for a PEG which I presume must be coming.
Hi, I was told not to use straws. For S it's the best thing. He struggles to lift or hold onto a cup and forgets how to tip it properly. A straw takes that away, the ones with a one way valve in are the best, but normal ones work just as well. I think it's trial and error, what works for your loved one is the correct way, not necessarily what SALT say.
That is s the same cup my husband uses. I ended up buying two when I found he had nothing to drink one day! It was being washed so that meant he had no cup? He was really thirsty.
How do you find the cup? I am not sure it makes any difference to be honest.
My husband has stopped taking milk in his coffee. He still chokes. He won't let me thicken it as he does with his water which he used to not choke on when thickened.....
Sounds like it is time for a swallow study to see if the epiglottis is closing over the glottis to prevent foods and, for our PSPers, thin liquids from getting through the windpipe....
Milk is not really agreat thing to drink....but probably not primary cause ...check with your SALT team.
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CHC changes are coming... Keep calm and drink tea.
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