Hello all and Thankyou for all the wonderful posts full of advice for caring with adults with psp.
I would like your ideas on how to help my father in law who was diagnosed with psp about 3 years ago & is now struggling with excessive saliva & problems swallowing especially liquids. He had been on hyoscine patches since a stay in hospital in October which had reduced the saliva. However the local Parkinson's nurse advised my mother in law not to use them as nasty side effects. My father in law stopped 3 days ago & is now having severe problems swallowing any liquids & some foods. Has anyone found that the excessive saliva makes the brain not register liquids? Should he go back to the patches. Any advice on how to get liquid into him more easily.
Any advice greatly appreciated as we are desperate to keep him out of hospital as previously he was put on a drip which made him miserable. Many thanks.
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Yorksgirl
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Yorksgirl, Re: the excessive saliva. Sam had had excessive saliva & his neurologist suggested Botox treatments. He receives 2 shots in salivary glands every 3 months. He still drools a little but it has helped and the Botox took effect within a week. Asked your specialists about it. Good luck
P needed all his drinks to be thickened in his final 12 months or more. Your local SALT (speech and language therapist) will be able to help. If you haven`t already been referred to one, your GP, local nurse or Parkinsons nurse should have done so.
Swallowing issues are common with these diseases. It's probably time to start thickening his liquids, especially water since it's the thinnest. The excessive saliva isn't causing the brain not to register liquids but the fact the brain isn't controlling the swallowing mechanics properly thus allowing the saliva to pool in the mouth. Dad never had a big issue with drooling so I have no 1st hand info on meds for it.
Yorksgirl you have had some good advice regarding this and
thickener and botox.
My husband used the patches and I wasn't aware of any nasty side effects. Did the nurse say what these were likely to be? They eventually stopped working when he was dying but he was given injections of another drug. Are you in contact with the hospice? They are pretty good with suggestions of what should be done next.
Much better than the hospital! Some Parkinson's Nurses are good but some not great in my experience.
Hello, I just wanted to let you know that my husband has the same problems and our gp gave us Atropine eye drops, which amazingly 2 drops under the tongue stops the saliva for the whole day, choking is a major factor tor PSP and CBD diagnoses, there’s several thickeners around, available from speech and language therapists, we have resource thicken up, and is starch based, I also purée meals for my husband, and although a fiddle it’s nicer to the eye to do individual foods separate, I then make up batches and freeze them, I buy the foil takeaway cartons and label them and date, hope this helps in a small way
My hubby too has a lot of saliva production.he is currently on 20mg of Amitriptyline, which is crushed and put through his peg line as he has practically no swallow at all. It can cause drowsiness that’s why it’s given at night. Doesn’t really seem to do that to him though but it does help with the saliva.
Hi there, saliva is a big part of psp, my brother is in his 9 Year now, been threw that he has never been on any meds as there are a lot of side effects seems like everything he has had eventually subsides, of course every patient is different, swallowing is a big problem everything is cooked soft, crock pot is good to use then cut up very small with gravy mashed potatoes, mashed sweet potatoes he loves, as far as liquids got to the point he couldn’t drink coffee or water as he chocked, when he was in the hospital back in August they gave him Thickit water he is able to drink 3-4 glasses aday and does not choke on it at all. Hopefully this info will help, take care. Nettie
My husband also did the Botox, which helped. But he requested a suction device and that helped tremendously. It is like what the dentist uses to suction the saliva out of your mouth. This also meant my dear hubby did not have to get out of bed and go to the bathroom to spit. We got ours through the respirologist.
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By private mail I send you our particular experiences on PSP-RS that we hope you can find useful.
The information I send you by private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and my best technical criteria that I have been able to contribute, thinking above all in guiding caregivers who have to face this unknown disease practically alone, exception made of PSP chats.
All very useful & valuable information. My mother in law cares for her husband with psp alone. We live 3 hours away so often very difficult to know how things are but I will share all your pearls of wisdom.
He has requested to go back to non puréed foods as he enjoys his food & my mother in law felt it was something he could still enjoy in his ever diminishing world. Possibly his muscles are too weak & tired for the chewing & swallowing required.
We are now trying non puréed food at lunch when he is less tired & puréed/soft snack on the evening.
He has gone back to his patches to control the saliva. It is frustrating that there are so many medical visitors ( dr, district nurse, Parkinson's nurse, neurologist , S&L etc) who give such conflicting advice.
This forum will be a great support . We are all just trying to do the best we can for our loved ones.
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