Does anyone know why the PSP patients moan continuously?

[judy1962]

Dave moans all day and night, but he says "No" when I ask him if he is in pain. Is there anyway to help him with the moaning. I sing to him and ask him to sing with me and sometimes he stops when we sing church hymns.

[LesleyB]

Hi Suzy

My dad used to make moaning sounds and I used to ask him if he was in pain and he'd say no or shake his head. I'd ask why he was making a noise then and he didn't know. He was also doing things like scratching his clothes as though there was something on them or pulling up his trouser legs

When I got the PSP Personal Guide I read in section 11 under obsessive or repetative behaviour that occasionally the ability to switch off an action is affected so a repetative movement such as the scratching the clothes can be seen. Then I read that this change can sometimes affects the vocal chords and a continuous moaning sound may happen. It would appear this is an involuntary action for the person with PSP and doesn't indicate pain but as it says in the book it can be distressing for the carer.

When I read this in the book it made me feel better and although I still asked dad if he was Pain, I knew if he said No then he was ok.

I hope you don't mind me passing information from the PSP Book but it reassured me at the time and I hope it does the same for you. It sounds like you are helping to break the repetative action really well by asking him to sing,

Take care of yourself Suzy

Lesley

[peterjones in reply to LesleyB]

THANKS FOR THAT LESLEY I THOUGHT I WAS GOING A BIT DOOLALLY

I THINK ITS CALLED INVOULANTARY TALKING PETER JONES QUEENSLAND AUSTRALIA PSP PERSON AND BIT OF A MOANER

IN THE BEST POSSIBLE WAY TAKE CARE BEST WISHES TO YOUR DAD MATE

[LesleyB]

Sorry Judy

Just realised I have called you Suzy, Please accept my apologies I had just read Suzy's blog as well. Take care

Lesley

[kay1]

Judy, the distraction with the singing sounds a good way of dealing with the noises, he must enjoy the music and hearing you sing. We have not experienced that, but dreadful problems with pulling t the bed clothes, and then after a struggle and much agitation he would remove his PJ trousers and dislodge the catheter at the same time. I don't think i will ever know if the two actions are connected.

[Jan_K]

Hi Judy

My Mum does this all the time and doesn't know that she is doing it. It is really embarrasing I know. I remember when we used to take her out for meals but had to stop that because of the embarrasing looks. It still happens at hospital appointments, etc and I could scream when people look at us. They are the deepest sighs, moans you have ever heard and so distracting to us but she is not aware at all. Lesley is right I think with the change in the vocal cords as the muscles have all weakened, also perhaps because of excess salvia and catarrah I don't really know. Think it is just another PSP P (problem as I call all her extra symptoms) Hope you can learn to shut it out yours ears like I try to . xx

[Bogg in reply to Jan_K]

Did you ever find a cure for this I have the same thing people make fun of me please let me know if you found help

[riosenior]

At times my wife also moans or grunts repetitively , which can be very annoying and extremely frustrating.

It is obviously a function of PSP but nobody, including the nurse specialists can offer either a reason or a solution.

I personally believe, in my wife's case, that moaning/grunting/sighing etc occurs for two reasons.

The first is an attempt to communicate as she has lost her speech. I then ask her all sorts of questions to try and identify her need ie toilet, drink, something to eat etc. We have a touchscreen speech aid and a communication sheet that have helped.

The second is almost an involuntary action -- I tried all sorts of distractions etc ,without any particular success, before I eventually tried getting her to close her eyes, concentrate on something that she enjoys and to try to picture it in her mind, and breathe really slowly and deeply for 2 or 3 minutes. This has been the most successful and works probably 6 times out of 10.

If neither work I usually make an excuse for leaving the room for a while and pray she will stop before I get back!!!!

Good luck

Roger

[judy1962]

Dear Roger,

I had to laugh at your comment about leaving the room. I do the same thing. I have found that getting Dave to meditate and praying works for him recently. He can be carrying on with that awful moaning and I say Dave remember that prayer that you ask me to pray for you each day. Can you think of that in your mind and meditate on that and talk to God and he does and the moaningand stops. It is truly a great distraction and I think that is the key to getting them to stop. I have noticed that he can be moaning up a storm and then a ball game will come onto the tv and he stops instantaneously, so I believe that distraction is the key.

[maggieh]

Hi Everyone,

What I found helped with my husband's repetitive moaning, was to get him blow for about three seconds over and over and to imagine a cake with birthday candles on the top. I would say "Let's blow out the candles". I would usually blow slowly and gently into his face at first until he got the idea. The action of puckering his lips to blow stopped the moaning. He indicated to me with a thumbs up that, "Yes,it annoyed him too to keep moaning, but he couldn't stop it", not without help. Sometimes if the monaing started up again, I would go through the whole routine once more.

This moaning phase went on for about 12 months until I suddenly realised he had stopped doing it.

Hope this may help some of you.

Love

Maggie

[judy1962]

Love this idea and I will try it! Thank you.

[Cagsy]

My mum has CBD and cannot say no and yes anymore. She moans as soon as family member is in the room. I just think its her way of communicating and letting us know she is there. As I ask her is she in pain etc go through whole routine leg back arms etc.

[2twin4]

Hello, my husband is moaning from morning to night, he will stop a few minutes and then continues again..The neurologist has prescribed botox injections on the vocal cords. really hope this will work, its really unbearable the loud loud loud sound of the moaning.

[Hidden]

You may want to use the search area at the top of this page and type in "Moaning Revisited" that will lead you to a previous post (initiated by me) with lots of replies and experiences about "moaning and noises" in PSP

Cheers

T.

[KJN99]

When my husband was in the later stages of PSP he used to moan. I asked him why he was making this sound and he replied slowly but clearly "it's soothing".

[daffodil48]

Mine is in early stages yet but I have found him to be making moaning sounds when he feels he wants "maybe" to cough but decides not to??

[daffodil48]

oops i just replied to a 7 year old post but maybe it will be helpful to newer questions about this

[Maman1234]

What is psp stand for