Coping with Groaning.

[AmandaF]

My mother has just been diagnosed with PSP. She groans, usually when tired, with each exhalation or sometimes with each inhalation AND exhalation.

When she was in hospital, I was uncomfortable that it disturbed other patients. Now she is home, I suppose I am getting used to it but I would prefer that she stopped! However, I am certainly not willing to ask for drugs and in any case, if groaning brings her some comfort then I wouldn't want to take it away from her.

She is aware that she does it and can even do it more quietly, if asked, but I don't like to make her feel that she is a nuisance.

I have found that if she listens to the radio, the groaning sometimes subsides. She has a small, handheld portable radio and listens with earphones, so it doesn't create a noise for other people. Maybe she gets the same comfort from the incoming sound (voices, conversation, music), that she otherwise gets from vocalising? It's not a perfect solution, but it works sometimes.

Does anyone else have experience of groaning and how to cope?

[Kathy]

Hi Amamda,

Groaning is a new one on me!! Not really heard of that before.

I would just rule out that she's not in pain or struggling with her breathing. Is she able to talk at all?? If not maybe she's just trying to communicate with you.

It seems you have already found a solution of some sort but I'm afraid I don't have any other useful suggestions

Love to both of you

Kathy xxx

[CateT]

Hi Amanda,

My mother does this from time to time. We are so used to it now, but when she first started doing it, she did it much more often. She seemed unaware she was doing it though.

Now that she can no longer talk and has just about lost her voice, she does it far less often. Like a lot of problems with PSP, it is self limiting, unfortunately.

There is no easy answers. I can't really give any advice apart from it will pass. I still don't know what causes it, but just wanted to let you know that you are not alone with this and it is definitely part of the illness.

Cathy

[AmandaF in reply to CateT]

Hallo, Cathy,

Your email made me think differently about this. Actually, I am just so grateful she can still talk, the groaning really doesn't matter.

I am so sorry to hear that your mother can no longer speak. Am only just starting to understand the journey ahead of us. Your note made me realise that I have limited time left to talk to her, so I must make the most of it,

Send you my best wishes.

Thank you, Amanda.

[CateT]

Sorry, there ARE no easy answers or there is no easy ANSWER. (grammar!). Both actually. This should be the PSP mantra!

[Kathy in reply to CateT]

This little note made me chuckle!

Thanks Cathy, I needed that!!

Love Kathy xxx

[huthwaite]

Peter did not suffer from groaning but we found that a speaker under his pillow connected to the radio was a huge help. As he could not wear earphones, it meant that he could listen to whatever he wanted to without disturbing anyone else. I think they are called 'pillow talk' and we got them from our local electrical shop. Hope this helps?