Help please! My poor Dad can't stop coughing.

[sarahchips]

Hi, My Dad was only diagnosed with PSP about 3 weeks ago but it is terribly aggressive and already he cannot weight bare, he can barely speak, is more or less incontinent and he is having problems eating. He is having a coughing bout at the moment and I just cant stop it. I have tried sitting him up, giving him water and now I've liquidised a pineapple with a few berries and am giving him that. Does anyone have any other suggestions as I am really worried and on top of that it will be another night that I don't get any sleep which wont be good for either of us. I know his chest is clear as I got the Dr to listen to it last Thursday so its this illness not a chest infection I feel like such a rookie....He only came for Christmas but he cant go home as he would never cope with this onslaught.

[Opope]

Sarahchips get your dad seen by a speech and language therapist (SALT) it sounds like your dad may be at the stage my mum is where swallowing becomes an issue which then causes coughing and choking and can/will lead to chest and lung infections. Does your GP understand PSP?

Our SALT team have been very good.

If you haven't already check the symptoms on this site or the NHS site.. You might also request a call on the PSP site for a specialist to call you to discuss your issues.

Good luck

Opope

[sarahchips in reply to Opope]

Thanks Opope. We have the S and L specialist coming on Thursday so we'll see what that yields. I have been in touch with the advisor at the PSP Ass and they have been super helpful. I will call them again today for more advise. With regards to the GP, I think he knows a bit but no-one knows that much it seems to me worker than the PSP Ass and the Hospice lady. So at last he's settled and I will grab a few hours sleep and then I'm supposed to try to go to work later on....not sure how that will pan out!

[nomansland]

OPOPE is right ,take a first step...it,s one of the hardest ,let us know ,it is not easy .,regards ,Rollie

[sarahchips in reply to nomansland]

Thanks Rollie, I'm on the case and its great to have other people to 'chat' to for support. Thanks so much.

[NannaB]

Hi Sarahchips. I'm sorry your dad has this awful condition. This may sound like an old wives tale, but when my husband gets the coughing fits for no apparent reason, I massage Vicks vapour rub into the soles of his feet. I saw it on Facebook a few months ago and it really does work for us.

[sarahchips in reply to NannaB]

We are on it and I'll report back. Thanks so much x

[cabbagecottage]

Is he on any medication . my husband has been on Sinemet and also th Neupro patch once we stopped using the patch the choke coughs stopped

[sarahchips]

He isn't on either of these things but on Modapor. Thank you for your help.

[formercarer]

We used Hyosine patches behind mums ear in order to reduce the amount of saliva she produced .You have to be careful because a super dry mouth isn't great either. Perhaps you should get some for your "middle of the night emergency tool kit."

We bought a special water hydrant which had a long tube and non return "bite valve" on. We would fill it with thickened water so that mum could take sips throughout the night. Thick and easy is a good product to make drinking easier and less likely to lead to choking. We got it free on prescription, but it can probably be bought from the chemist.

We also had a proper hospital bed, mum was much more comfortable sleeping propped up.

Best wishes to you both. x

[sarahchips in reply to formercarer]

Thanks Formercarer. I like the idea of the 'Middle of the night emergency tool kit'' and I have e mailed our assigned Hospice worker to get the Thick & Easy. We have the hospital bed and a hoist now, thank goodness because my back was breaking and the bed is great for Dad to sit up in as you say. I will look into the water hydrant if we use the Hyosine patches. We are hanging in there and have had a better night tonight Thanks x

[GillJan]

My husband has had the odd choking fit and I have found that if he takes very small amounts of food each time he is less likely to choke - he also seems to grumble when eating. On the odd occasion he chokes when drinking - he finds sucking a sweet (like our tune throat lozenges) - not sure if it is this that helps or the fact his is concentrating on something else that stops him choking

[sarahchips in reply to GillJan]

Thanks Gilljan, I'll try this as well. Much appreciated.

[Kelly55]

Hi Sarahchips, I'm inclined to agree with former carer. My mum has thick and easy powder added to all liquids until its a syrupy consistency, she cannot drink water so it's the worst thing to give her in a coughing fit as it slides down into her lungs and exacerbates it! Pineapple juice thickened is meant to help and I personally think ginger and lemon tea (thickened and added honey) helps with mucus build up. My mum also uses hyosine patches, they are for travel sickness but dry up the saliva. PSP sufferers do no particularly produce excess saliva but their reflex to swallow it has gone so it pools in the mouth then chokes them. You do have to balance out the patches though as a dry mouth is very irritating too. I leave a day in between patch changes. Also have saliva spray for during night. All on prescription for my mum as a pensioner. We also use atropine drops under the tongue, this is milder than the patch and better in earlier stages. They are tricky to get prescribed though as meant to be for eyes not tongue! We had to get neurologist prescription. It's horrible watching them choke and cough but you have ti just soothe and reassure as much as possible. Fresh air or a fan can help, as the cool air and calming effect help. Mum also has lorazepam tablets to be used when a really bad choking fit - it's a sedative/relaxant so muscles stop tensing in the throat and easier to breathe again. Does cause drowsiness though so I tend to use at night time more. Hope that helps!! It's a rather complex condition PSP and there are lots to think about !!!

[sarahchips]

What great info. Thank you very much. I have just sent an e mail to the Hospice worker assigned to us and asked her about all these medications you mention and for some Thick & Easy. This Forum id fabulous. Its so reassuring to know you are not alone, especially in the middle of the night! Thank you for your time once again.

[Kelly55 in reply to sarahchips]

You're welcome sarahchip! These forums are invaluable! Found out much more on here than more official websites as people on here are living with the condition daily and so truly understand. Hope your hospice worker is able to help with some of my suggestions. If there is anything else I can do or help with just let me know. Take care x

[Mconnie]

Some blood pressure medications have side effect of extreme coughing.