Excess saliva, swallowing issues, PEG

[Purrlie]

Hello everyone,

My husband was just diagnosed with PSP a few weeks ago, mostly because he suddenly developed swallowing difficulties. This has progressed very rapidly and since April 9th he has been unable to manage more than a few tablespoons of applesauce daily to take necessary prescription medication. 7 days ago he began subcutaneous fluids and now, after a silly delay at the gastroenterologist's office, compounded by Covid issues, we are waiting for him to be admitted to hospital ASAP so that a PEG can be implanted. This was recommended by the SLT, as it seems there are five or so elements of the swallow reflex that are not working.

He, like so many others I read about here, has excess saliva, very thick and it is so difficult for him to cough up and spit out. That seems to be the bigger issue when he trying to swallow the applesauce + pill. Crushing the pills and opening the capsules (only those approved by the pharmacist) to mix with the applesauce does not work for him as he can only take such small amounts that he really tastes the bitter meds and he feels the powdered bits coat his throat. Surprisingly, he has been able to manage the capsules and pills. We have found that if he rinses his mouth repeatedly with ice cold water and spits, he can start a trail of saliva and after a few minutes of constant rinsing and spitting, manages to get quite a bit out. He also rinses his mouth with pineapple juice--apparently it has an enzyme that breaks down the saliva so that it is less sticky and thick--and that also helps him spit out more. I suppose little amount seeps down his throat and that helps cut the thickness. Ginger tea and purple grape juice can have the same effect. For those who can still swallow fluids it may be worthwhile to test these out, even if they have to be thickened. We have also increased humidity (thank you for that tip, Luis) and that also seems helpful.

The most bizarre part of this is that it seems as if the swallowing issue occurs after PSP sufferers have lost a lot of mobility, or their balance etc., and yet my husband's walking, balance and even facial expressiveness improved a couple weeks before the swallowing shut down so radically. It may be because the Lithium he takes for another condition was reduced by half, but then again, as many have commented here, PSP is different and unpredictable in its progression for everyone.

I apologize for the long post, but I really hope the tips about the rinsing and juices and tea may help someone else.

As always, we welcome any advice and are grateful we found the PSP Association.

Purrlie

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[AliBee1]

Dear Purrlie. Thank you for sharing. We were advised to use Pineapple Juice as it is fairly acidic and can break up the saliva. Our doctor also prescribed most of my husband's meds in liquid form so it might be worth asking. Good luck to you both. AliBee x

[Purrlie in reply to AliBee1]

Many thanks, AliBee1. My husband was admitted to hospital this afternoon. Our pharmacist has written up a protocol for meds that can be administered through the PEG, so we are hoping that once the feeding tube is in place, we will not have to worry about him swallowing anything, just dealing with the excess saliva then. I have 5 cartons of pineapple juice in the fridge! All the best, Purrlie

[key4u]

There are patches, liquids and dispersibles it shouldn’t be necessary to crush tablets. We used Scopoderm patch to stop saliva. Neupro patch for PSP, before that we used dispersible Madopar. Dispersibles disolve in a spoon of water which we added to yoghurt. FYI dairy is slick and goes down easy.

[Purrlie in reply to key4u]

Hi key4u,Many thanks for the suggestions. I have taken note and will speak to our doctor.

Purrlie