204010

[204010]

Hi every one My husband who has PSP is making a lot of grunting noises & coughs so load it makes me jump. He is also obsessed with kitchen roll paper, moves it about in his hands, moves it from one place to another. Have to keep paper close as he dribbles a lot. Finding all these things very hard to cope with & find myself feeling angry & frustrated. Just feel sorry for my self at times & wanted to have a rant. Sorry. Love to every one out there dealing with this terrifying disease. Joy

[Millidog]

Hi there, I'm thinking of you and with you too with the frustration and anger...feeling so alone and what about me. its so hard. I think obsessive behaviour is a common symptom of PSP but can manifest in many different ways. My husband gets up and down and goes backwards and forwards with his walker unsteadily around house checking things, lights, moving things and more. I cant offer any suggestions but try and ignore the things that don't matter too much 🙂 easier said than done I know

[Stormtrooper4]

Hi Joy

My dad has CBD and he also tends to make these noises but they are more of a moaning and groaning and coughs all the time. In fact my mum had a terrible night with my dad last night. He started with the noises around 1am and continued to the morning meaning my mum had next to no sleep at all last night. Dad also makes these noises during the day and has known to go on all day with nothing settling him down.

My mum discussed this with my dad's specialist nurse and she said this is called Palilalia which is repetition of words or noises which happens where certain parts of the brain are effected.

x

[Flowersinyouhair]

I can’t offer any advice but just to say my mum does the same. The moaning noises seem to be worse when she is tired. My mum is also obsessed with tissues. Like your husband she dribbles a lot and her nose constantly runs but she goes through boxes of them just pulling tissues out constantly. Is there a way you can take an hour to yourself to have a break from it all? Take care xx

[Redjune1]

My husband is the same. I’ve noticed that for maybe a month now he has been grunting a lot but he doesn’t seem to know that he’s doing it. He’s also obsessed with kitchen paper and always has lots of it with him, stuffed down the side of his chair, in his pocket, anywhere, but still needs more. I haven’t got an answer though, just wanted to say I know what you mean.

[Manonfire]

Hi my husband is obsessive, mostly at night, his phone watch and ipad have to be in a certain position on the dressing table, drives me mad especially when I am tired and just want to get to bed, sometimes I think he’s got OCD as well. I have taken up a hobby (dressmaking) and to be honest it’s the only thing that is keeping me sane. I can go off in another room and loose myself in my hobby and at the same time keeping an eye on him. I have recently reached out to the PSP association and I have started going on their Zoom meetings. I have found that helpful listening to people going through the same thing. My husband also dribbles and has difficulty when he’s eating and can’t always get the food in his mouth, but it is all part of the disease and I know it is only going to get worse. I reached out to my doctor a few months ago because I was not coping, I have just finished two months counselling which has helped in such as reaching out to other organisations and not trying to do everything on my own. I have spent the last nine years saying ‘I’m fine’ to anyone who asked ‘are you ok’, when I should have been saying ‘no I am not fine I need help’. Try phoning your local council and asking for a Carer’s assessment. I am waiting for one, I should have asked for one years ago. I will let you know how it goes.

You take care and don’t lose hope…x

[daddyt in reply to Manonfire]

Good for you. There's no shame in asking for help.

Tim

[45purple]

Don’t feel guilty it’s a natural feeling. My husband makes noises to which I jump at. Hugs 💜

[AnneandChris]

Hello there

I can't comment on the groaning or noises as my husband didn't experience this. However there are things to help with the excessive dribbling.

There are Atropine eye drops which can be taken orally which help to dry up the secretions. Also Scolpadeine patches are often used and in the later stages Glycophrrolate is often prescriibed.

Please talk to your GP about this, I'm sure he will be able to help.

You're doing a tremendous job, feeling frustrated is natural so keep on keeping on.

Hugs

Anne

[Joluu]

Sorry I have no advice but i really do understand your frustration. Mum's toilet roll obsession is in its 8th year and still driving me to distraction as it's under the pillow in her bag up her sleeves all over the floor...... I'm so thankful that you raised the issue as I hadn't really realized it was a PSP thing until now ( how stupid am I)this is the place to learn the realities of PSP that the medics never tell you!Good luck x

[daddyt in reply to Joluu]

'Medics' don't know. Consider yourself the expert.

Tim

[messier]

Oh yes the tissue obsession! Isn’t it great when you realise that what you think is just your person is what everyone is dealing with! I find this Forum so reassuring for that. Mum can barely get a tissue to her mouth or nose now so there aren’t quite so many tissues stashed around her now. I’ve got a little air purifier machine in mum’s room that has a little pad that you can put Olbas oil on and that seems to have helped to reduce the alternating dribbling and blocked nose.

[Runner333]

Thank you for sharing the things that your loved one is obsessing about. My husband obsesses about time and the schedule for the day. I want to describe this to the doctor but I feel bad saying obsession or compulsive behavior in front of my husband. It sure does help me to deal with it when I know that I am not alone. I appreciate your advice.

[Red1990]

My mother makes a similar noise & cough in the evenings. Somehow, I have noticed that a spoonful of two of Gaviscon seems to calm it down. I suspect that she may be struggling a reflux issue.

[Red1990]

Also, looking up the term "achalasia" may provide some insight.

[Wybert]

Hello, I've just registered so thank you for sending in your post. My husband is obsessed with tissues and toilet paper. I've become an expert at unblocking a toilet. He can go through a box of 72 small tissues in an afternoon. At least having read your post and the replies I know it is a common symptom and I can understand how irritating it is to us carers. It is good to know I'm not alone.

[Troubleandstrife]

there’s not a single picture of my husband during his final year where he doesn’t have a hankie or kitchen roll (paper towel) in his hand. Thankfully I can smile about it now, but it was worrisome at the time.

[Kayelless]

My mom had a stroke several years ago and would obsessively pick something invisible off her clothes and l put in her pocket. It was related to something called clubbing, when the lower arm and hand curl into the chest. Whatever brain misfire caused the clubbing also caused the hands to do this strange invisible lint-picking. In the end she would carefully hand pieces to my dad who would pretend to put them in his pocket. One day he told her his pocket was full and she turned and started handing them to a nurse.

My OT told me it might happen to me too, with my PSP. It’s just a random nerve path getting mis-routed somewhere. I’m thinking your paper issues may be a similar crossed wire.

Kyle

[Old_Hall]

Hi Joy, I can completely understand your anger and frustration. I work from home full time and am my husbands carer. I jump out of my skin when he does a big breath in through his nose, it is so loud. Then we have the obsession of folding his handkerchiefs and the constant wriggling in his seat. All these little habits build up and I hate myself for losing my temper. We have to vent it someway so I find going into another room or outside to just let rip can help! I learned the hard way as I lost my temper so much one day he lashed out and hurt me. It was a real wake up call, it wasn't his fault and the guilt I felt was awful. I know it is extremely difficult, we all just want our loved ones back as we knew them. Every day is a challenge. We were with our PSP consultant yesterday and my husband looked so vulnerable when he was doing to physical tests with him. To be locked in this horrible decease must be dreadful but it is us looking in that carry all the pain and anger. Please for your own health and sanity, find a way to vent your anger away from your husband, I hope you have good support around you. I used to hate asking for help, now I find it easy and of course you have friends and support on this wonderful forum. We are all here to help each other. Take care xx

[DaffodilPrimerose in reply to Old_Hall]

Dear Old_Hall I understand and have lived every word you said.

This disease is cruel and takes the carer down as well.

It is very important that we discuss with medical teams events such as the lash out and what happened in the lead up, you are right it is not the patients fault but it is also something that you should feel no guilt over.

Medication to slow down the obsessive behaviour and to dull down the possibility of lashing out is very important. Safe spaces for caring are needed. When a carers energy reserve is being used dealing with the obsessive behaviours which causes impulsive behaviour which causes falls which causes stress for all, the energy left for the very basics of caring is reduced. If we are at this point, we have to recognise we are at a turning point of the disease. If the patient is to remain at home, we have to look at the go forward. Nobody wants their loved one slowed down, but for everyone's safety the conversation about new or increased behavioural medication needs to happen.

It is the cruel the disease, not us, not them no one's fault, just the hand we have been dealt.

Peace and blessings

[Old_Hall in reply to DaffodilPrimerose]

Thank you, you are absolutely right in what you say. I do find it has helped not to get angry or lose my temper in front of him now and hopefully this was a 'one off' but I know I have to be realistic and expect things to progress. David has been so much more relaxed since I have been staying calm in front of him and it has also helped me to deal with things differently. If, when it happens again, I will have the conversation with our consultant. I am so lucky to have close family and friends I can rely on and I get to have a life of my own, some people have no one so I am very blessed. Thank you.