Drooling

[45purple]

Hi Karol has had a dry mouth since having peg fitted and nil by mouth for fluids . However he has started drooling a lot this week and I wouldn’t say clenching his mouth but holding his mouth together so you just see his teeth. If I say to close his mouth he doesn’t or can’t . Is this just another stage of PSP / CBS? Thanks June 💜

[Zerachiel]

Hi

The clenched mouth is a symptom, botox injections to th jaw muscles can help. Also massage the the jaw muscles.

The drooling can be controlled using drugs and/or botox injections to the saliva glands. This needs to be done to stop him aspirating on the saliva, make sure you give good mouth care to keep the bacteria down in his mouth.

I know of three drugs for saliva control, Glycopyrronium which you can get in liquid form, Atropine drops which you place under the tongue and Hyoscine; there are two types of Hyoscine injections which are used in hospital and Hyoscine patches,

DO NOT allow the use of the patches as it crosses the blood brain barrier and can cause people with PSP to be impulsive and loose any regard for their safety, my wife would get up and fall over you would pick her up and she would do the same 2 minutes later which resulted in many injuries and hospital trips.

Have a word with the consultant about these.

[45purple in reply to Zerachiel]

Thank you for your advice Zerachiel. 💜

[Sun-flowerwearer]

Hi

Although we say everyone progresses differently I think the symptoms that arise along the way are really common. The drooling comes with the progression in challenges with swallowing and the muscles in the mouth, tongue, throat struggling to move. My husband has drooled excessively for two years. He doesn’t have a PEG but I’ve read often that secretions continue with a PEG. In my husbands case he also has jaw clenching and locked shut teeth which makes eating anything other than liquids very hard.

We tried atropine drops for a few months and pineapple juice and neither have made a difference. The GP also mentioned anything that dries up saliva may make his constipation worse. The neurologist mentioned Botox but we were never invited to the hospital for an appointment and a month after we saw the neuro he was hospitalised with sepsis and when he was discharged he’d lost his ability to move or walk or care for himself in any way so I have not pursued Botox. I’ve also read Botox stops being effective eventually anyway. It’s tough all round but it is related to PSp/CBD progression.

[DaddysPrincess]

Yes, it’s part of their disease. Dad also experienced it. We tried Atropine drops for his drooling as prescribed by his neurologist. It helped at first but only for few weeks then it didn’t. He kept on drooling for 2 years I guess. We always make sure we have extra napkins, paper towel, handkerchiefs, apron and hand towels to aid him and we bought sweaters that are kinda stain proof, if his saliva fell on the his clothes it’s not visible or obvious. He used to hold his mouth or handkerchief too since he’s aware he’s drooling.

And this year, drooling stopped and yet there are times he keeps on swallowing constantly (I guess those are the saliva). He’s palliative already and the muscles in his face are not cooperative anymore. His mouth is open all the time. He can't talk, cry, laugh, and smile as he wanted to. But tears can flow from his eyes, or when he’s happy we can see it in his eyes. Rarely he can smile. We can see his reactions through his eyes nowadays.

But he does not have a PEG.

[45purple]

Sorry your dad is going through this horrible disease . It’s just knowing what is PSA and what isn’t 💜💜