Looking for ideas? Mum is really struggling with her speech and although I see her every day , I'm finding it really hard to understand what she is trying to say. Can anyone suggest anything to make it easier? I say to mum to say the main word in which, what she is trying to tell me but it's hard work for her. Anybody any ides?

Also recently mum has has to start wearing her dark glasses all the time as she says her eyes are sore. She doesn't blink at all now and dr has increased her eye drops but her eyes are really bloodshot.

I hate this cruel disease it's just not fair. I have never known such a more courageous woman as my mum, after all this horrible thing throws at her, she still smiles and laughs. I wish I had her courage ?

I'm so lucky she is cared for in an excellent place. I just wish I could take it all away. I just want my mum back

14 Replies

  • Hi Steph, I just logged on to post a similar question! My Dad's speech has gotten significantly worse over the past couple of months. It's frustrating for him as he can't get across what he is trying to say, and upsetting for us as we can't understand him. I arranged for a speech therapist to come and see him to see if there was anything that could be done.

    I just spoke to her after her assessment this morning, and she said that regular appointments may help teach the patient how to make the most of their speech but the main problem is that with an illness where cognitive processes and memory are affected, it probably won't be worth it as they struggle to retain the therapy from session to session. So not the news I was hoping for as Dad's memory has started to be affected as well as everything else (horrible, horrible illness!!!).

    On the other hand, she did recommend a 'communication chart' that makes it easier for the patient to point to letters, words or pictures. Unfortunately won't work for my Dad as his eyesight is so badly affected as well, but not sure if this would help your Mum?

    I'm so glad to hear that your Mum is so courageous and brave though - she sounds like an awesome lady. Hang in there, the frustration and upset for loved ones is just awful but this site has brought me so much comfort in feeling that we are not all on our own with this disease.

  • Steph

    I know exactly what you are going through. My mum is immobile apart from a little movement in her right hand. If she is asked a question she can still say yes or no (sometimes mixes them up though) we have decided to try flash cards, we will try words if she doesnt do well with them tgen we will try pictures (including those of our family) We also tried getting her to say the main word or trying to say 1 word at a time but mum got so agitated and so upset.

    I can't believe the specialists cant help us with this dilemma.

    My mother in the early stages hated the bright lights and wore sunglasses indoors, she still has problems now but they dont seem as bad or mum just doesnt complain. She also regularly suffers with bloodshot eyes and infections.

    They are so so courageous aren't they and its so hard imagining what it must be like for them and how frightening. Trapped inside a body that doesnt work but knowing what is going on.

    Be strong x

  • Hi Steph, keeping this brief as I'm a bit fragile today.

    My mum has the same problems - get her to do the hand signals, thumbs up and down. Get the SALT team on it. Get her a card system so she can point to a place on the card - for example my mum has a picture of a human body - point to where it hurts.... that kind of thing seems to help. Once you start thinking of what you'd normally expect her to say, I want coffee, I need the loo and so on, make those cards, laminate and tie together and you'll have a basis for normal everyday items.

    It's not ideal with the lack of eye sight, but if we put the chart directly in front of her she seems able to see it and respond. She does get very frustrated.

    Bl**dy horrid disease.

    Good luck. x

  • hi i cannot agree more I HAVe PSP and have an iipad for when my speech goes

    i do not know what else to suggest apart from flash cards et


    lol jill

    hugs and xx to you

  • have you ever asked you mum to sing. Something familiar one of the old songs .

    I do it with John all the time . it distracts their mind from stress the she might be able to find the words

    we have quite a variety of songs he goes through .

    anything is worth trying , start with BaaBaa Black sheep

  • Hi,

    We used a portable amplifier, which did work for a little while. We also got some word/ picture charts from the speech therapist so that mum could point to the picture that indicated her needs such as food, drink, toilet etc. Ultimately though, her needs had to be anticipated and her wishes made known through her raising her hand in response to direct questions. ( If you want ..... raise your hand now.) A speech therapist is useful in that they can prescribe thick & easy, and might even have access to other aids, but as far as therapy is concerned, it really wasn't useful for mum.

    I hope this helps.

  • I have an app called Speech Tool which tries to get the user to speak louder. Try it. Janet won't use it so no good for us! J's speech is quiet and unclear - and to make matters worse I'm deaf. Even with aids it's difficult to understand. For me it's one of the worst aspects of the disease, we can't really converse anymore. And in a car, well ......

  • Singing the words make them much easier to understand. For some reason.....I sing the words to my husband and use a tune that is familiar..and he doesn't like that I am singing but understands the words much much much better and answers. I used to work with autistic children without language but they could sing the words.

    Also most of the time I respond to the mixed up speech of my husband as if I understood what he was saying. I say "yes", "of course", "right", "I'll try" etc. and that works..or just say "not important" and kiss him.

    Don't focus on the words or trying to get it clearer that just makes them agitated and frustrated. Try to understand the non-verbal communication and show empathy by mirroring his emotion and facial expression.

    It is horrible to lose communication. But I have found that I must let it go and use other ways to communicate. It has gotten worse and worse until now when he does not understand most of the time and can't communicate verbally. I think it is important to let them know that you understand even if you don't. Usually I can tell what emotion he wants to communicate and we have long pseudo conversations. I think it is form not content. Being understood is important and can be communicated bodily even it the words are wrong.

    Also, don't get stuck in a confused language loop. Change the topic by distracting..."Let's get ice cream". Or "we'll talk about this after some coffee." Don't focus on the content...let it go.


    Costa Rica

  • Yr reply is good advice When my husband could speak very little I got a bigger teli for the bedroom where he was I put on shows / programs / hockey Stuff he enjoyed It put him to sleep ,,,,, but he never asked for it to be turned off

  • Very helpful to me, Jill. thanks. We are just getting beginning the frustration stage of communication, so your strategies seem worth keeping in mind as we go.

  • Hi Steph75

    My husband ,who has CBD ,struggles , often with word finding. It does wear me out at times.I have to say that I don't understand what he is saying after playing like a charades game for ages.....there are times that I actually get what he is saying and he is so am I is such a relief!

    The speech therapists came up with apps that I could down load onto the I Pad but they weren't things that Roy could use and quite frankly, useless.I have ,however,just found an app that may be useful one day. it was free although you can upgrade for £3.99 to a more up to date version......We haven't tried it yet and it wasn't an app that was suggested to us but we might have a go....Have a look. It is called Picture Board, it even has a voice that you can use.

    Hope this helps and good luck.

    D x

  • Hi with mum we have used so many things a blackboard and chalk a white board a Go talk , thumbs up or down . Now it's really a case of asking questions to which she can indicate a yes or no answer eg I will ask do u want a drink ? and she will move her leg a bit for a Yes and not move it for No all the very best Louise

  • This is my first time writing in. My wife was diagnosed with PSP three years go. I had a terrible time understanding her recently so I purchased a tablet which has a touch screen keyboard. If I dont understand a word, she types in on the keyboard. Hope this helps.P.S. we live in Canada.

  • Me. from Canada Toooo my husband just recently Passed away I'm from northern Ontario a dreadful disease Yuck No one should have to suffer like THIS. It does teach yu more patience than yu ever Thot yu had Good luck all !!!!!?????

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