COPING WITH EXCESS SALIVA (FATHER HAS PSP)

Hi, my father has PSP sadly and at times has excess saliva for which he is always worrying about and constantly wiping his mouth. I came across a company called Bibetta (www.bibetta.com) who specialise in adult 'bibs' or 'tabards' I thought I'd send off for the tabard as dad does tend to put too much in his mouth and is forever getting food/drink down himself... the tabard the company state is waterproof, lightweight and is virtually stainproof.... I have to say they really are telling the truth and has been a godsend! I've now invested in the neckerchiefs they do (they do them in different colours) and today my dad tried one for the first time and it is wonderful. It is soft and waterproof and feels luxurious and looks very smart. I thought I'd share this with you all as it has made my dad have a little of his dignity back bless him.

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  • Geoff has eye drops on his tongue for the excess saliva, they have really worked a treat and he doesn't slobber at all anymore!

    I think that they are atropine but am not sure but I do know your GP will know which are the right drops to use.

    Good luck

    Sandra

  • Hi Sandra, yes we are waiting for a prescription to go across to dad's GP for the drops, thanks for replying... this last week of him having the tabard and today the neckerchief has been wonderful as I've taken dad out a few times and having these stops him feeling embarrassed... PSP is such an awful disease. We have carers going into him 4 times a day... he's adamant he wants to stay in his own home which is a worry as he lives alone though I am nearby to oversee things with the carers and to visit and do the chores. So hard to see this disease slowly but oh so bloody surely take him over. It's affecting his sight, no two days are the same... speech isn't very good, his writing is barely readable, he falls easily, his legs are freezing up more lately..... all started around 7yrs ago when he went to kick a ball to my son and as he went to kick it he fell backwards, at the time we all found it funny but then he noticed that he felt a 'pulling' sensation into the road as he walked along the pavement, from there he started to complain that he's legs felt weak and began to have trouble getting up from the sofa. He was diagnosed as having Parkinsons Disease but when the medication wasn't working for him along with other symptoms I was noticing... ie. when he fell or stumbled it was always backwards or sidewards never forwards, he was putting too much food into his mouth... it was as if I was ticking all the boxes to PSP and when his Neurologist mentioned PSP shortly after me starting to question whether it was PSP it came as no surprise. It's hard overseeing everything and being there for my dad and coping with the fact he is so ill... just wish it was all a bad dream and will wake up from it and all will be well... but its not to be and the wheels of life keep you turning doesn't it? Can't be feeling sorry for myself when my poor dad is going through this terrible disease.

  • ...though I must add it's not all doom and gloom and we do have a sense of humour, well you have to laugh or you'd cry!

  • Hi Sandra, yes we are waiting for a prescription to go across to dad's GP for the drops, thanks for replying... this last week of him having the tabard and today the neckerchief has been wonderful as I've taken dad out a few times and having these stops him feeling embarrassed... PSP is such an awful disease. We have carers going into him 4 times a day... he's adamant he wants to stay in his own home which is a worry as he lives alone though I am nearby to oversee things with the carers and to visit and do the chores. So hard to see this disease slowly but oh so bloody surely take him over. It's affecting his sight, no two days are the same... speech isn't very good, his writing is barely readable, he falls easily, his legs are freezing up more lately..... all started around 7yrs ago when he went to kick a ball to my son and as he went to kick it he fell backwards, at the time we all found it funny but then he noticed that he felt a 'pulling' sensation into the road as he walked along the pavement, from there he started to complain that he's legs felt weak and began to have trouble getting up from the sofa. He was diagnosed as having Parkinsons Disease but when the medication wasn't working for him along with other symptoms I was noticing... ie. when he fell or stumbled it was always backwards or sidewards never forwards, he was putting too much food into his mouth... it was as if I was ticking all the boxes to PSP and when his Neurologist mentioned PSP shortly after me starting to question whether it was PSP it came as no surprise. It's hard overseeing everything and being there for my dad and coping with the fact he is so ill... just wish it was all a bad dream and will wake up from it and all will be well... but its not to be and the wheels of life keep you turning doesn't it? Can't be feeling sorry for myself when my poor dad is going through this terrible disease.

  • Mum has dry mouth and hard to swollow food. Does you dad have trouble swallowing food?

  • When my dad eats I have to remind him to slow down and not to put too much in his mouth and yes he does have trouble at times swallowing as the muscles are slowly getting weaker.. I have to remind him to put his chin on his chest as this does as someone else has said on here give them a stronger swallow.

    Mandy

  • Excess saliva is a part of PSP i have very thick saliva and I have cough which is very very loud. I have shown it to many doctors ,but no remedy. I f all backwards mostly and some times in front also .That is because my eyes closes all the time .I don't sleep .During day I never sleep and in the night I sleep 4to5 hrs , that do in short spells. am 72 and i have PSP

  • KPS are you taking medication that may be the reason you aren't sleeping at night? I find with my wife that fatique is a huge part of PSP so I'm wondering why you aren't sleeping much. Anyone else have problems sleeping?

    Jimbo

  • Yes, my mom had excess saiva too, from an early stage. We had bibs from the Betterware catalogue which came through our door, they were a godsend and 2 years after her passing, I'm still using them when I put my make up on I'm the mornings!! Some speech + language therapists can give you a suction machine like that which dental nurses use, and you can have training on it or the district nurse does it. That's for when it gets thicker, as the automatic swallow reflex forgets to kick in. Our sense of humour kept me sane and mom happy; she wanted to stay at home which was tough as she lived alone but with good carers, nurses, me going part-time and having a helpful social worker we managed it! Can recommend Home Instead Senior Care (branches all over UK) as they were great for care in the home and I managed eventually to get NHS Continuing Care to pay for them. Good luck, jane xx

  • Yes, I forgot to add that dad's muscles in his throat are getting weaker so swallowing is a big problem. All meals have to be supervised.

    *it worked for dad but we cut dad down with dairy products and I must admit it has stopped the saliva being thick... another culprit is chocolate we found with dad. (hope this helps you too)

  • Galagirl, I've also heard that dairy products are condusive to saliva bulid up. However, hadn't heard about chocolate and my wife LOVES chocolate.

    Jimbo

  • Hi Jimbo... I haven't heard about chocolate either but tried cutting dad down and found it has worked.. (by the way I have replied to your posts on here but not via the direct reply button, your comments have been a great help)

    Mandy

  • Thanks Mandy, I'm just trying like all of us to exist and deal with each PSP day as best I can. I'm sure there must be a special, very special, place in heaven for anyone who has had to deal with PSP (patient or caregiver). :)

    Jimbo

  • Jane, thankyou for posting about your mum and so sorry for you loss. Your post really did give me some comfort that being at home worked for your mum... we are in the process of trying to organise bringing dad's bed downstairs as the Drs are worried about him using the stairlift. (and will definitely look into the suction machine)

  • My husband was diagnosed 8 years ago and not a morning goes by when I wake hoping it is all just a bad nightmare and will go away but it is not. We take each day as it comes which sometimes is easier said than done. But we get by. With regard to excessive saliva we use Hyacine patches that go behind the ear. Each patch - the size of an old sixpence - lasts 72 hrs and they have done the trick. They also help my husband sleep better at night as he doesn't cough so much. If the coughing is excessive he also has cough mixture for chesty coughs and this makes a lot of difference. There have been other comments on the blog re thickening fluids, using milkshakes and sitting very upright when eating to stop coughing/choking and these also help. Unfortunately because Doctors don't really know much about PSP everything is trial and error. Take care and keep blogging! Kind regards Denmob.

  • denmob, Swallowing for PSP patients has to become a routine where we do it normally. Every swallow has to be thought about carefully like "ok, I'm going to swallow now". That prepares the swallowing muscles and brain to know that a swallow is coming. Lowering the chin toward the chest is another trick that makes a swallow easier. Because the lowered chin swallow requires more pressure the swallow often goes better. These are just things I've found that work.

    Jimbo

  • Thank you. Have made your suggestions to my husband. He hasn't tried the chin on chest but will do. Regards Denmob

  • Hi Galagirl, my mom also suffers with excess saliva, so much so that she would go through a box of tissues weekly. She goes to see her consultant, (the doctor who originally diagnosed PSP) every 6 months, and that is always her first complaint to him.

    Her last visit Jan 2013, he suggested to moms GP that he prescribes a 'patch' that goes just below her ear. It seems to be working, she is using a lot less tissues now, saving me a fortune :).

    Take care

    Tony

  • Hi galagirl

    My hubby's neurologist prescribed Amitriptyline 10mg, one tablet before bedtime (as they can make you sleepy) for excess dribbling. This works well.

    Take care, Maddy

  • Thankyou for all your comments, it really does make you feel you are not alone in all of this! I had heard about the patch but we decided against it as dad's skin is really sensitive. Would be great if the drops enable him to have a relatively good nights sleep as he said he's awake most of the night. I also forgot to add that dad has a Thickener called 'Thick & Easy' in all of his fluids which is prescribed by his GP.... the list is endless! At the moment it's dad's speech that has suddenly taken a turn for the worse, its barely audible and where he doesn't move his lips its so hard to understand him. I/the family constantly remind him to 'get angry Bill, use them stomach muscles' to remind him and to remind him to use his lips... at one point we were told that dad had the starting of dementia and he was determined to let me know he DID NOT have it... well lo and behold he was right! He had tests which lasted a couple of hours (memory etc tests) and he proved us all wrong... the spots on his brain that made the Drs decide it was dementia was in fact caused from his Diabetes (hardening of the arteries) ...though I was told that his erratic behaviour (sometimes you try and get him to understand something that would be for the best and he seems to not be able to grasp it) is all down to having PSP... I waffled on sorry about that but every time I've commented I suddenly remember something else!

    Mandy

  • Galagirl, I'm finding that dementia isn't the issue with my wife who has PSP. I have found that the brain is just WAY slower than a normal brain. The memory and thinking are there but just WAY slower. My opinion is that the dementia part of PSP symptoms is very over emphasized. What do others say? Is dementia a HUGE problem with your PSP loved one?

    Jimbo

  • Jimbo, Only today I had to tell an aquaintance that my husband does not have dementia or Altzheimers. She asked me how he was and then said her father has Altzheimers as well. She was surprised when I told her his memory is better than mine and still plays bridge. Like your wife, Jimbo, he needs time to process language so doesn't answer questions immediately but if you give him time he will. A while ago I asked him why he hadn't answered me when I asked him what he wanted for lunch; he said, "In my mind I did answer you, I thought I'd said it out loud". If the answer to a question is just yes or no, he now does thumbs up or down and he responds like this much quicker.

    Today he had his 2nd session at the hospice day club and recognised a volunteer who ran the local football club our son played for when he was 10-12 years old. Our son is now 38! My husband remembered his name.....I didn't.

    He said he likes going to the hospice although when I left him for the first time last week, I felt like I did when I left our sons at playgroup for the first time. He told me he had a back and foot massage today and went to sleep as it was so relaxing. When I went to collect him, I was told to bring my diary next week as I could also have a massage and aromatherapy and the hospice would provide someone to sit with my husband at home while I had it as they don't want me to use my free time on a Friday. Brilliant.

  • Yep, Sharyn, my PSP wife has a better memory that I do. Enjoy the massage, you deserve it. :)

    Jimbo

  • You have described my dad exactly... he says the exactly the same thing when I've said the same to him.. that in his mind he thought he had answered me...

  • Hi Jimbo, yes we have to remind dad to swallow and put his chin on his chest to give him a stronger swallow. I know they don't stage PSP but this had steadily got worse for him. It's so good to have this forum to hear how people who actually have PSP and are able to post on here to share how they cope... it give's me an idea what my dad is going through... he doesn't talk about his feelings and how it affects him.. he just says he feels so weak.

    Mandy

  • and yes Jimbo I agree totally with you on that their thinking is slow but with my dad with different things he was saying and doing it made sense at first that they diagnosed dementia but in other ways my dad is sharp as a button and can remind me of appointments etc and solve a puzzle on my ipad when I've asked him a question. The other behaviour I've been told is caused by the PSP affecting the brain ?? ...I so wish a cure would come to light.

  • My 81 year old mum has had PSP for 8 years. She is now bedridden, cannot speak, cannot swallow and had a PEG fitted last April. She suffers with dry eye for which I use hypromellose drops, and dry mouth for which I use mouth swabs, oral gel and artifical saliva spray. Just recently she has started getting excessive saliva in the back of her throat causing her to choke, gurgle and splutter as her swallow reflex is not strong enough to swallow it and her cough reflex is not strong enough to clear it. I'm going to have to ask about a suction machine. She has been assessed for NHS Continuing Healthcare four times but was not eligible as apparently she doesn't meet the criteria! Whe I first moved in with her in 2009 she appeared to be suffering with some form of dementia as she was asking about her parents and my dad who were deceased. She also spoke as if she was still living in the home she shared with her family in the late 1940's and 1950's. It was shocking and upsetting as I didn't know how to deal with it. While she was still able to talk, her memory was very good and she corrected me on a few things whilst talking about things that had happened in the past.

  • Hello Everyone ! This is my first time posting on here. My mother has PSP and has the same problem with excess saliva. Her nurse prescribed a hayacinth patch which works a treat. She was on a tablet to begin with but the specialist doc said the patch was better. They are small round patches that you place behind the ear and change every days.

    I hope this helps .

    Ros :)

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