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PSP Association
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Lack of Speech

I can relate to the problems you are having with your Mum and her inability to communicate her needs/pain. I have the same problem with my sister because she is in the advanced stages of this awful disease.

The way we do it is --- If you think she wants/or is trying to tell you something. Ask a question, for instance, "are you in pain" if you are squeeze my hand. I ask questions for the various scenarios drink, toilet, need to lay down etc. It is a process of elimination until you get to the right one but when someone is in this stage you have no other option. We have tried a sound board and flash cards but my sister has gone beyond being able to use them. There is no easier answer you have to find any way you can to at least retain some way of communicating . Like everything with PSP it is trial and error and thinking outside "the box".

Good Luck and keep trying.


4 Replies

Hi Maeve, my wife is slowly getting to the same stage, trial and error and try not to get frustrated. Because of the condition, I see in her eyes how annoyed she is. This site has been a great help to me knowing I am not alone with a sufferer of CBD. Got to keep positive and smile. My wife can still do that and it does help. Also, you find your real friends, we have.


Hi Maeve

just been reading your letter i have only recently found out about this organisation i am finding it very helpfull knowing that i am not alone My Husband was diagonised with cbd/psp about a year ago wi do not know what stage he is at he can not do anythinh for himself for some months now needs help with all aspets of daily living its not easy as he rarely talks but would do anything that i would ask him ie if i asked to shower him twice a day he would say yes i am afraid to leave him fo long incase he has a fall my whole life seems to revolved around him i have a famoly but they have their own children so i dont like asking for help i get very tired and dont have much energy i have yet to find my real friends



Hi there,

I am sorry to hear you are having this problem. Unfortunately it seems to be another step down the PSP road. My husband has not spoken for some time now and at the moment we communicate using thumbs up for yes and thumbs down for no. He gets very frustrated when he can't be understood and I tell everyone to ask direct questions instead of either/or kind of questions. It's working for us at the moment but as we all know things change all the time................

look after yourself too,



We have the same trouble, particularly when ,mum has an infection brewing- I am usually the only one who can understand her so she is naturally a little clingy when it is time for me to go but I do go in for several hours every day to check everything is ok and feed her dinner. I find mum's speech is worse when she is laying in bed (more so when she is poorly) as she has less strength in her facial muscles then and is not able to form the consonants so we only get the vowel sounds and slight movements of the lips. As I was born with severe hearing loss I am able to use my skills to work out what mum says even though these days I hear extremely well with my aids.So do try sitting them up if they are bed bound to see if it helps.

As you say yes and no questions are definitely easier for them and I have found one blink or 2 blinks is still very useful even when she is very ill and not able to move much at all.


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